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Feasibility of the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) with a visual impairment: a pilot study

Feasibility of the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young... Background: Having a visual impairment affects quality of life, daily functioning and participation. To assess rehabilitation needs of visually impaired children and young adults, the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) were developed. The PAI-CY comprises four questionnaires for different age categories: 0–2 years, 3–6 years, 7–12 years and 13–17 years. This pilot study assesses the feasibility and acceptability of the PAI-CY and PAI-YA, and the relevance of the content of the questionnaires. Methods: In addition to the regular admission procedure, the PAI-CY and PAI-YA were completed by 30 participants (six per questionnaire). For the PAI-CY, parents completed the questionnaire online prior to admission. From age 7 years onwards, children completed the questionnaire face-to-face with a rehabilitation professional during the admission procedure. Young adults completed the PAI-YA online. Subsequently, participants and professionals administered an evaluation form. Results: Overall, 85% of the parents rated all aspects of the PAI-CY neutral to positive, whereas 100% of all children and young adults were neutral to positive on all aspects, except for the duration to complete. The main criticism of professionals was that they were unable to identify actual rehabilitation needs using the questionnaires. Minor adjustments were recommended for the content of questions. Conclusions: Parents, children and young adults were mostly satisfied with the questionnaires, however, professionals suggested some changes. The adaptations made should improve satisfaction with content, clarification of questions, and satisfaction with the questionnaires in compiling a rehabilitation plan. Although face and content validity has been optimized, a larger field study is taking place to further develop and evaluate the questionnaires. Keywords: Visual impairment, Children, Adolescents, Young adults, Pilot study, Participation and Activity Inventory (PAI) * Correspondence: [email protected] Department of Ophthalmology, VU University Medical Centre and the Amsterdam Public Health research institute, PO Box 70571007 MB Amsterdam, The Netherlands Full list of author information is available at the end of the article © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 2 of 12 Background and systematic way, the Participation and Activity Inven- Although no accurate prevalence data are available on tory (PAI) was developed and implemented in the visually impaired children aged 0–17 years and young Netherlands [13, 14]. The PAI is based on the Activity adults aged 18–25 years in the Netherlands, visual Inventory of Massof et al. [15] and the nine domains of impairments are estimated to affect 2600 children aged the Activity and Participation component of the Inter- 0–14 years [1]. In the Netherlands, most visual impair- national Classification of Functioning, Disability and ments in children and young adults are due to develop- Health (ICF) from the World Health Organization mental and (rare) genetic disorders, with the most (WHO) [16]. The domains of the PAI are similar to the common diagnoses being cerebral visual impairment, al- domains of the Activity and Participation chapter of the binism and nystagmus [2]. Visual impairments impact ICF, i.e. learning and applying knowledge; general tasks the participation of children and young adults [3–5] as and demands; communication; mobility; self-care; do- well as their daily functioning and quality of life [6, 7]; mestic life; interpersonal interactions and relationships; these impairments can also cause social isolation which major life areas; and community, social and civic life. (over time) can lead to lowered self-esteem and depres- The content of the PAI focuses on the needs of adults sion [8, 9]. Since there is no general consensus on the and is, therefore, not applicable to identify the needs of definition of participation in children and those with an children aged 0–17 years, since needs develop with in- impairment [10], patient record studies were conducted creasing age [4, 12]. Moreover, the life stage of young in order to evaluate the rehabilitation goals of children adults aged 18–25 years is characterized by the transi- and young adults with a visual impairment [11, 12]. tion of becoming an adult, with a growing need for inde- These studies found that challenges most frequently pendence and autonomy [17], making the extensive faced by children are related to learning and applying content of the PAI less applicable. Because multidiscip- knowledge, mobility, and major life areas (although goals linary rehabilitation centres currently lack an instru- related to other participation domains may be underrep- ment to identify the needs of children and young resented) [12]. Young adults most frequently face chal- adults, they are dependent on their own knowledge lenges related to mobility, domestic life, communication, and expertise when creating an inventory of needs. interpersonal interaction/relationships, general tasks/de- Relying solely on the personal expertise of low vision mands, major life areas and leisure activities [11]. professionals (e.g. social workers, occupational therapists, Furthermore, concept-mapping studies have been con- educational and developmental psychologists) carries a ducted with children, parents and professionals from risk of bias and an underrepresentation of needs [11, 18]. low vision rehabilitation centres to get more insight into Furthermore, incorrect identification of rehabilitation the impact of a visual impairment on activities and par- needs might influence referral to rehabilitation pro- ticipation [4, 5]. In children, it was found that low vision grammes and the quality of care provided [19]. affects sensorial development and physical, psycho- Therefore, we developed PAI questionnaires to assess logical, and social well-being. However, external factors the needs of visually impaired children and youth aged 0– such as educational type and parental influence either 17 years (PAI-CY), and young adults aged 18–25 years facilitate or hinder participation. Furthermore, because (PAI-YA). To aid interpretation of the PAI-CY, four differ- of the rapid development of children, each life stage has ent age categories were formed based on the WHO cri- different aspects which are most influenced by the visual teria: 0–2 years (infants and toddlers), 3–6years impairment. For example, the attachment process most (preschool children), 7–12 years (school-aged children), crucially influenced the first life years, whereas mobility and 13–17 years (adolescents). For each age category, a and general development were most important for pri- different PAI-CY was developed, which differs in the do- mary school-aged children [4]. Having a visual impair- mains covered and the number of items included. ment as a young adult affects various life-aspects related An important step in the ongoing development, to participation, including activities related to work, validation and implementation of the PAI-CY and study, social skills and relationships, activities of daily PAI-YA is to perform a pilot study [20]. The present living, leisure time and mobility. Especially activities re- pilot study is part of a larger validation study, and lated to study and work were considered important by aims to assess the feasibility and acceptability of the young adults [5]. These studies also contributed to oper- PAI-CY and PAI-YA in the regular admission pro- ationalizing the construct of participation for these pop- cedure: i.e. to evaluate whether use of the question- ulations further. naires in practice is workable and whether the Low vision rehabilitation centres can help visually im- questionnaires are acceptable to both clients and paired children and young adults to identify their needs professionals. Another aim is to determine whether and become more self-reliant by offering rehabilitation. relevant topics are included and whether all items To assess rehabilitation needs of adults in an objective and response categories are clear. For this purpose, Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 3 of 12 clients and rehabilitation professionals were asked for the study criteria above, participants had to have suffi- their perceptions and experiences after using the PAI-CY cient knowledge and understanding of the Dutch lan- and PAI-YA. guage and adequate cognitive abilities. The study protocol was approved by the Medical Eth- Methods ical Committee of the VU University Medical Centre, Development of the PAI-CY and PAI-YA Amsterdam. This study was performed in accordance The most important stakeholders were involved in the with the ethical standards as laid down in the Declar- development of the PAI-CY and the PAI-YA, thereby ation of Helsinki and its later amendments. Informed largely contributing to the content and face validity of consent was obtained from all participants, including the questionnaires. children aged 13 years and older and their parents. Fur- For the PAI-CY these were professionals of low vision thermore, informed consent was obtained from parents rehabilitation centres, and parents of children aged 0–17 of children below the age of 13 years. years and children aged 7–17 years. For the development of the PAI-YA, professionals of low vision rehabilitation centres and young adults aged 18–25 years were in- Data collection volved. The most suitable method for each stakeholder The PAI-CY was administered as part of the regular was chosen: parents received an online questionnaire, admission procedure of low vision rehabilitation cen- focus group discussions and semi-structured interviews tres. Parents with a child in one of the age categories were held with children aged 7–17 years, and concept- of the PAI-CY completed the corresponding que- mapping workshops were organised for professionals stionnaire online in advance of the admission proced- and young adults aged 18–25 years. All methods aimed ure by the rehabilitation service. Children aged 7–17 at generating statements regarding activities a child/young years completed the corresponding questionnaire adult with a visual impairment would like to participate face-to-face with a rehabilitation professional of a low in. For the PAI-CY, the results from questionnaires, focus vision rehabilitation centre during the admission pro- groups, interviews and concept-mapping were combined cedure. Immediately after assessing the PAI-CY, par- in a conceptual model, which contributed to the develop- ents and children were asked to fill in an evaluation ment of the PAI-CY questionnaires [4]. For the PAI-YA, form about the PAI-CY and its assessment, aimed at concept-maps of professionals and young adults, and the determining and improving acceptability and feasibil- combined concept-map, contributed to the development ity of the PAI-CY. The professional involved in the of the PAI-YA questionnaire [5]. admission procedure was also asked to complete an The PAI-CY and PAI-YA consist of activities divided evaluation form about the PAI-CY for the question- into different domains, e.g. play, self-reliance, mobility, naire filled in by parents, and, if applicable, about the communication, social relationships, day-care/school/ questionnaire filled in by children. Due to a longer study, leisure time and acceptance/self-consciousness than expected inclusion period, the first author also (see Table 2 for a complete overview of the domains per administered the PAI-CY to a small number of partici- questionnaire). Each item is scored on a 4-point scale pants; these participants were already enrolled in care with the response options: not difficult (0), slightly diffi- from low vision rehabilitation centres. Children were vis- cult (1), very difficult (2), impossible (3). The response ited at their home to administer the PAI-CY, whereas par- options ‘Not applicable’ and ‘I don’t know’ were treated ents completed the questionnaire online. as a missing value. The PAI-YA was also tested with young adults who were already enrolled in care from low vision rehabili- Participants tation centres; they also completed the PAI-YA and Participants with a visual impairment were recruited evaluation form online. Parents and young adults filled from two low vision rehabilitation centres in the in questions about demographic characteristics, such Netherlands, Royal Dutch Visio and Bartiméus. All par- as date of birth (of their child), sex (of their child), na- ticipants met the study criteria when they were aged be- tionality, and educational level. In addition, parents tween 0 and 25 years and fulfilled the criteria for visual were asked which parent administered the question- impairment according to the WHO [21]. Furthermore, naire e.g. mother, father or together, their marital participants were considered to meet the study criteria status and whether their child had siblings. Partici- when they were eligible for care in a low vision rehabili- pants’ clinical characteristics, such as visual acuity and tation centre according to Dutch rehabilitation referral diagnosis were retrieved from their medical file. All guidelines, i.e. when the visual impairment caused limi- questionnaires were entered in an internet-based tations in activities of daily living that could not be questionnaire programme where no missing values solved by regular healthcare services [22]. In addition to were allowed. Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 4 of 12 Statistical analysis Results Descriptive statistics were calculated for demographic Participant characteristics variables of participants, including age, gender, informa- A total of 30 respondents participated in this study. Each tion regarding eye condition and visual acuity, and PAI-CY was filled in by six parents of children with a which parent filled in the questionnaire on behalf of the visual impairment. Simultaneous measurements were parents. Responses to the PAI-CY and PAI-YA were ex- taken from 12 children in the age categories 7–12 years amined to indicate floor and ceiling effects. Floor and and 13–17 years. For the age categories 0–2 years, 3–6 ceiling effects were considered present when at least five years, 7–12 years and 13–17 years, five, six, four and out of six participants rated the lowest or highest score one parent (and child), respectively, completed the PAI- possible, respectively (i.e. ‘not difficult’ and ‘impossible’). CY as part of the regular admission procedure. All other Furthermore, mean difficulty scores were calculated per participants did not complete the PAI-CY as part of their domain and age category, using the mean domain diffi- regular admission, as they were already in care at low vi- culty for each respondent. The mean domain difficulty sion rehabilitation centres, and questionnaires were ad- for each respondent was calculated when at least 50% of ministered by the researcher instead. the items in that domain were scored. Data were ana- In total, 17 evaluation forms were available from profes- lysed using SPSS version 22.0. sionals, as four of them did not compete (both) evaluation Furthermore, satisfaction regarding the PAI-CY and forms. Subsequently, six young adults who were already PAI-YA was assessed using the evaluation forms of par- receiving care filled in the PAI-YA. Table 1 presents char- ents, children and professionals. If possible, qualitative acteristics of the participants. Ophthalmic diagnoses are data from the evaluation forms which were similar were classified according to eye structure affected by the disease combined. Based on the results of this study, each item because there was a large variation in ophthalmic diagno- of the PAI questionnaire was discussed and consensus ses. Examples of cerebral diagnoses are cerebral visual between the first and the second author was reached in impairment and cerebral palsy, whereas examples of ret- order to develop an improved version of the PAI-CY inal diagnoses are hyperopia, retinitis pigmentosa and and PAI-YA. Stargardt’s disease. Table 1 Characteristics of the participants by age group PAI-CY 0–2 PAI-CY 3–6 PAI-CY 7–12 PAI-CY 13–17 PAI-YA 18–25 Age in years Mean (range) 19.3 (8–30) 4.5 (3–6) 9.8 (8–12) 15 (13–17) 22 (18–26) Sex Male, N (%) 3 (50) 5 (83.3) 4 (66.7) 5 (83.3) 1 (16.7) Visual acuity Blind, N (%) 1 (17%) 1 (17%) 1 (17%) Low vision, N (%) 3 (50%) 3 (50%) 5 (83%) 5 (83%) 5 (83%) Unknown, N (%) 3 (50%) 3 (50%) Ophthalmic diagnosis Cerebral, N (%) 2 (33.3%) 2 (33.3%) 1 (16.7%) 1 (16.7%) 1 (16.7%) Retinal, N (%) 1 (16.7%) 5 (83.3%) 3 (50%) 4 (66.7%) Lens, N (%) 1 (16.7%) Optic, N (%) 1 (16.7%) 1 (16.7%) Unknown, N (%) 3 (50%) 3 (50%) 1 (16.7%) Proxy parents Mother, N (%) 2 (33.3%) 4 (66.7%) 6 (100%) 4 (66.7%) Father, N (%) 2 (33.3%) 1 (16.7%) 1 (16.7%) Together, N (%) 2 (33.3%) 1 (16.7%) 1 (16.7%) Duration in minutes Mean (range) 13.3 (5–25) 21.7 (15–45) 16.7 (5–25) 14.2 (10–20) 45.8 (30–90) Age in months instead of years Blind: visual acuity ≤ 0.05 and/or visual field ≤ 10° Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 5 of 12 Responses to the PAI-CY and PAI-YA PAI-CY (Table 4). Although over 80% of the profes- Response category frequencies were calculated for each sionals were neutral to positive regarding insight into questionnaire. Only floor effects were found and these possibilities and limitations of the client using the PAI- were present in all questionnaires. In the PAI-CY 0–2 CY, about 50% of the professionals were negative about year, floor effects were present in only one item (2%) re- the insight gained of rehabilitation needs and the identi- lated to raising the head. In the PAI-CY 3–6 years, floor fication of additional rehabilitation needs using the ques- effects were present in 25% of the items; these were re- tionnaires. Furthermore, almost 80% of the professionals lated to various domains and tasks, e.g. recognising fa- rated the questionnaires’ ability to clarify rehabilitation cial expressions, talking, recognising colours, and eating needs negatively (Table 4). independently. Floor effects were present in 12 and 16% Five parents missed some items in the questionnaires, of the items in the PAI-CY 7–12 years administered by e.g. regarding visual field functioning (0–2 years), energy parents and children, respectively. Floor effects of par- management (7–12 years), computer/IT and smartphone ents and children partly overlapped and were, for ex- use (7–12 years), functioning in extracurricular activities ample, found in participating in group activities, playing (7–12 years) and use of visual aids (13–17 years). Two imaginary games, telling your parents about activities, children indicated they missed items regarding swimming finding your way in school, going to the bathroom, and (7–12 and 13–17 years) and one child regarding self-care actively participating in a conversation. Floor effects (13–17 years). Three young adults indicated items that were found in 6 and 20% of the items in the PAI-CY were lacking, e.g. regarding coping with stairs and steps, 13–17 years administered by parents and children, re- travelling to unknown locations, and approaching some- spectively, which also partly overlapped. Floor effects one you like. Two professionals stated the PAI-CY 3–6 were found, for example, in using social media, search- years was more applicable for children aged 3 years than ing for information, doing the dishes, and asking ac- for children aged 6 years, and professionals lacked items quaintances for help. In the PAI-YA 18–25 years, floor regarding reading and writing, behaviour at school, orien- effects were found in 30% of the items, e.g. finding visual tation and mobility, and completing tasks in this question- aids, cooking, managing finances, taking medication, naire. Two professionals lacked information about the using the computer, inviting friends, dating, planning a course of pregnancy, childbirth and development in the daytrip, listening to music, and expressing feelings. first years of life. Further assessment of the mean difficulty (overall pos- Parents, young adults and professionals also gave sug- sible range: 0–3) showed that domains in the PAI-CY 0– gestions for the deletion or clarification of some items. 2 years ranged from 0.6 to 1.5 in difficulty, and domains Young adults mentioned that some items needed re- in the PAI-CY 3–6 years ranged from 0.1 to 1.5 in diffi- phrasing to make a distinction between activities per- culty. According to parents, domains in the PAI-CY 7– formed independently or with others. Furthermore, two 12 years ranged from 0.4 to 1.1 in difficulty while items (not standing out as different, and being aware of according to children difficulty ranged from 0.3 to 0.9. regulations regarding vehicle driving) were indicated as The mean difficulty of domains in the PAI-CY 13–17 unclear by young adults. One young adult indicated the years ranged from 0.6 to 1.1 according to parents and domain intimate/romantic relationships was not related 0.2–0.8 according to children. On average, children rated to having a visual impairment. Professionals mentioned the difficulty of all domains lower than their parents, ex- lack of information on the distance (e.g. looking at cept for the domains finances and leisure time by chil- something directly) in the PAI-CY 0–2 years and co- dren aged 7–12 years. Mean difficulty of domains in the nfusion about the interpretation regarding two items PAI-YA 18–25 years ranged from 0.1 to 0.8. Table 2 pre- (participating in birthday parties, and finding the way in sents the most important characteristics of the domains school) in the PAI-CY 3–6 years. in each questionnaire. Based on the comments and suggestions of partici- pants and professionals, adaptations were made to the Evaluation of the PAI-CY and the PAI-YA questionnaires with the aim to improve feasibility in The evaluation forms of parents indicated that over 85% practice and acceptability to clients and professionals. In of the parents rated all aspects of the PAI-CY neutral to all questionnaires, after each domain an item was added positive (Table 3). All children and young adults also to clarify the rehabilitation needs (Do you have any rated all aspects of the PAI-CY and PAI-YA neutral to questions for the rehabilitation centre regarding the positive, except for the duration to fill in the question- topic … or would you like to receive rehabilitation for naire. According to participants, the questionnaire was this?). Furthermore, in all questionnaires items were clear, easy to use, and helps to get a first impression be- added, and one and six items were removed in the PAI- fore talking to a professional about rehabilitation needs CY 3–6 years and the PAI-YA, respectively. Two do- (Table 3). Professionals were more critical regarding the mains (mobility, and reading and writing) were added in Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 6 of 12 the PAI-CY 3–6 years, and the order of the domains in perceived as most intrusive, and therefore placed at the the PAI-CY 13–17 years and the PAI-YA were slightly end of the questionnaire. In all questionnaires, some adapted based on the comments of participants. For the items were rephrased, or examples were added or ad- PAI-CY 13–17 years, adolescents did not like to start justed for clarification purposes. After all additions and with the mobility domain, because items in this domain deletions, the final PAI-CY 0–2 contains 44 items, the are generally perceived as most difficult. Therefore, it PAI-CY 3–6 years 62 items, the PAI-CY 7–12 years 55 was chosen to start with leisure time, which was per- items and the PAI-CY 13–17 tears 58 items, which are ceived as easier and more fun to start with. For the PAI- respectively 2, 11, 5 and 8 items more than the pilot ver- YA, the domain acceptance/self-consciousness was sions. The final version of the PAI-YA contains 141 Table 2 Domain characteristics for each PAI questionnaire Domain in PAI- PAI-CY 0–2 PAI-CY 3–6 PAI-CY 7–12 CY/PAI-YA No. of Domain Mean No. of Domain No. of Domain Mean No. of Domain No. of Domain Mean Mean items order difficulty items order items order difficulty items order items order difficulty difficulty pilot pilot PAI parent final final PAI pilot pilot PAI parent final final PAI pilot pilot PAI parent child (SD) PAI (SD) PAI PAI (SD) PAI PAI (SD) Bonding 6 1 0.8 (0.9) 6 1 5 1 0.3 (0.2) 5 1 Incentive 4 2 1.0 (0.9) 4 2 3 2 0.4 (0.3) 4 2 processing Visual attention 4 3 1.2 (1.1) 5 3 4 3 0.8 (0.4) 4 3 Sensorial 12 8 1.5 (0.8) 13 8 10 11 1.5 (0.8) 10 13 functioning Orientation 2 4 1.3 (1.3) 2 4 3 4 0.7 (0.5) 3 4 Motor 2 7 1.3 (0.6) 2 8 functioning Reading and 511 writing Play 5 5 1.1 (1.0) 5 5 3 5 0.7 (0.8) 3 6 3 1 0.6 (0.5) 0.6 (0.4) Self-reliance 4 10 0.8 (0.5) 4 12 5 7 0.6 (0.5) 0.3 (0.3) Finances 1 9 0.4 (0.5) 0.7 (0.8) Mobility 7 6 0.6 (0.9) 7 6 6 5 4 3 1.0 (0.4) 0.8 (0.7) Communication 2 7 0.8 (1.3) 2 7 5 8 0.1 (0.2) 4 9 12 5 0.7 (0.3) 0.6 (0.5) Social 6 6 1.1 (0.6) 6 7 6 2 0.5 (0.5) 0.3 (0.3) relationships Day-care/ 6 9 0.9 (0.4) 6 10 11 6 0.9 (0.4) 0.6 (0.6) school/study Leisure time 3 4 0.5 (0.4) 0.7 (0.9) Acceptance/ 5 8 1.1 (0.5) 0.9 (1.0) self- consciousness Reading and visual aids Household Living independent/ finances Self-care Computer skills Intimate/ romantic relationships Peer contact Holiday and going out Information/ regulations Applying Work Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 7 of 12 Table 2 Domain characteristics for each PAI questionnaire (Continued) Domain in PAI- PAI-CY 7–12 PAI-CY 13–17 PAI-YA 18–25 CY/PAI-YA No. of Domain No. of Domain Mean Mean No. of Domain No. of Domain Mean No. of Domain items order items order difficulty difficulty items order items order difficulty items order final PAI final PAI pilot PAI pilot PAI parent child (SD) final PAI final PAI pilot PAI pilot PAI young adult final PAI final PAI (SD) (SD) Bonding Incentive processing Visual attention Sensorial functioning Orientation Motor functioning Reading and writing Play 3 1 Self-reliance 5 7 7 6 0.6 (0.7) 0.2 (0.3) 10 6 Finances 1 9 1 8 0.7 (1.2) 0.3 (0.8) 1 8 Mobility 4 3 7 1 1.1 (1.2) 0.8 (0.8) 7 2 14 5 0.7 (0.4) 16 2 Communication 12 5 11 4 0.8 (0.8) 0.4 (0.4) 11 4 11 13 0.3 (0.2) 11 12 Social 6 2 7 3 0.9 (0.8) 0.5 (1.0) 7 3 11 7 0.5 (0.3) 11 9 relationships Day-care/school/ 11 6 9 5 0.8 (0.4) 0.5 (0.4) 9 5 8 15 0.7 (0.4) 8 14 study Leisure time 8 4 4 2 1.0 (1.0) 0.6 (0.5) 9 1 11 11 0.3 (0.1) 11 7 Acceptance/self- 5 8 4 7 0.9 (0.9) 0.5 (0.6) 4 7 8 12 0.6 (0.2) 7 17 consciousness Reading and 5 1 0.8 (0.4) 5 1 visual aids Household 7 2 0.3 (0.2) 7 5 Living 8 3 0.2 (0.2) 8 4 independent/ finances Self-care 8 4 0.3 (0.1) 7 6 Computer skills 9 6 0.2 (0.2) 8 3 Intimate/ 4 8 0.1 (0.1) 3 10 romantic relationships Peer contact 6 9 0.4 (0.6) 6 11 Holiday and 11 10 0.4 (0.5) 11 8 going out Information/ 12 14 0.6 (0.7) 12 13 regulations Applying 4 16 0.4 (0.3) 4 15 Work 6 17 0.5 (0.2) 6 16 items, which is 2 items less than its pilot version. Table 2 of responses, the results of the evaluation forms, and the provides a summary of the results and Table 5 presents comments and suggestions made by parents, children, the items that were added to or removed from the young adults and professionals. In general, most parents, questionnaires. children and young adults were satisfied with the con- tent of the PAI and the role the PAI could play in identi- Discussion fying the rehabilitation needs during or prior to an This pilot study can be considered an initial, critical step admission at a rehabilitation centre. Professionals were in the further development of the PAI-CY and PAI-YA. more critical, and stated that the PAI was not able to The questionnaires were modified based on the analysis identify rehabilitation needs, because it provides insight Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 8 of 12 Table 3 Evaluation of the PAI questionnaires by parents, children and young adults Item in evaluation questionnaire Rating Number of Number of Statements parents (%) children/young adults (%) Satisfaction with admission procedure + 16 (67%) 9 (75%) Questionnaire helps to get a first impression; everything was clear; ± 8 (33%) 3 (25%) clear questionnaire; easy to read - 0 (0%) 0 (0%) Insight in possibilities for rehabilitation + 11 (46%) 5 (83%) No further comments ± 12 (50%) 1 (17%) - 1 (4%) 0 (0%) Representativeness of problems in daily life + 7 (29%) 10 (56%) Nice that there is space for comments; everything was included; some items ± 14 (58%) 8 (44%) are very easy/for younger children - 3 (13%) 0 (0%) Difficulty to choose a response option + 18 (75%) 13 (72%) Need a response option between little difficult and very difficult; ± 4 (17% 5 (28%) don’t know some answers - 2 (8%) 0 (0%) Satisfaction with identification of rehabilitation + 14 (58%) 5 (83%) Makes you think about daily situation needs ± 10 (42%) 1 (17%) - 0 (0%) 0 (0%) Satisfaction with duration of completing forms + 19 (79%) 13 (72%) No further comments ± 5 (21%) 2 (11%) - 0 (0%) 3 (17%) Only children aged 7–17 years were asked Only young adults aged 18–25 years were asked Only children aged 13–17 years were asked only into the possibilities and limitations. Although this clarity of the items, and the addition/deletion of some approach is also used in the PAI for adults they are cur- items. Although professionals lacked information about rently working with [14], professionals apparently expe- the course of pregnancy, childbirth and development in rienced difficulty in: i) translating the information from the early years of life, questions about these topics were the questionnaires to the rehabilitation needs or goals, not added to the PAI-CY/PAI-YA because they do not and ii) selecting a corresponding rehabilitation interven- relate to activities and participation, but rather to health tion. Nevertheless, the question that was added to the conditions and/or personal factors which are often PAI regarding rehabilitation needs, should help profes- assessed at an earlier stage. sionals to better identify and translate the possibilities This study shows that the questionnaires also had im- and limitations revealed by the questionnaire into the in- portant positive qualities, which was confirmed by the dividual’s rehabilitation needs and goals. evaluation forms of the professionals. The availability of From the evaluation forms and the comments/sugges- questionnaires for both children and parents allows to tions made by parents, children, young adults and pro- compare their responses, a feature highly valued by pro- fessionals, the PAI-CY and PAI-YA were generally fessionals. However, due to the small sample size, it was considered to include the most relevant topics, and most not possible to compare agreement/concordance of chil- of the items were clear. The instructions for the ques- dren and parents; this will be assessed in future studies tionnaires were slightly adapted to clarify how the ques- with a larger sample size. Moreover, the questionnaire tionnaire should be administered, and also when the prevents important topics from being overlooked by the option ‘Not applicable’ should be selected. Furthermore, professional or client, as almost half of the professionals the language used in the questionnaires was modified to was able to identify additional rehabilitation needs when make it easier to understand by parents, children and using the PAI, which would (probably) not have been young adults (e.g. words such as rehabilitation needs/ identified when using an open interview. goals were replaced by words such as rehabilitation The more critical attitude of professionals towards the questions). Based on the suggestions of participants and PAI questionnaires was also reflected in the development professionals, minor changes were made to the content of the PAI for adults [14]. For successful implementation of the questionnaires, e.g. the order of the items, the of the PAI-CY and PAI-YA in the future, it is important Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 9 of 12 Table 4 Evaluation of the PAI questionnaires by professionals Item in evaluation questionnaire Rating Number of Statements professionals (%) Insight in rehabilitation needs client + 2 (12%) Gives insight in possibilities and limitations, but not in rehabilitation needs ± 7 (41%) - 8 (47%) Insight in possibilities and limitations client + 8 (47%) Nice questionnaire to go more into depth; responses to questionnaire give limited information; ± 6 (35%) good to have responses of parent and child - 3 (18%) Estimated perception of client regarding questionnaire + 12 (71%) Difficult to fill in for parents because of language use; some items are not applicable because of age; nice to ± 5 (29%) have comment boxes; unclear whether questionnaire should be filled in as using visual aids; response option - 0 (0%) don’t know is lacking Clarification of rehabilitation needs using questionnaire + 5 (29%) Unclear what rehabilitation wishes/needs are ± 0 (0%) - 12 (71%) Contribution in development rehabilitation plan + 0 (0%) No further comments ± 17 (100%) - 0 (0%) Satisfaction about duration + 14 (82%) No further comments ± 1 (6%) - 2 (12%) Correspondence available products to identified needs + 1 (6%) No further comments ± 12 (71%) - 4 (24%) Identification of additional rehabilitation needs + 6 (35%) Able to identify additional needs that would not have been identified using a semi-structured interview ± 2 (12%) - 9 (53%) that professionals are satisfied with the questionnaires. In- age category. Due to the lengthy inclusion period, the volvement of professionals at an early stage may provide first author administered the remainder of the question- better understanding of the relevance of implementation naires to children and young adults already receiving for themselves and their clients. Furthermore, early in- care from low vision rehabilitation centres and who were volvement of professionals in the implementation process participating in the larger validation study. Conse- might lead to identification of factors which can influence quently, only a limited number of evaluation forms were the future success of implementation [23, 24]. available from professionals, and only the feasibility of Although pilot studies are generally conducted using the PAI-CY for the age categories 0–12 years could be qualitative methods such as think-out-loud studies or confirmed with some conviction. Nevertheless, the pro- focus groups [20, 25], this pilot study also aimed to as- cedure for the PAI-CY 13–17 years is comparable to that sess the feasibility of the PAI-CY and PAI-YA within the of the PAI-CY 7–12 years, whereas the procedure of the regular admission procedure. Therefore, the PAI-CY was PAI-YA is comparable to that of the PAI-CY 0–6 years completed prior to (by parents) or during (by children) and the PAI for adults [14]. Thus, the results of this the admission procedure at a low vision rehabilitation study seem to support the feasibility of the PAI-CY and centre. Because most children are referred to a rehabili- PAI-YA within the regular admission procedure; how- tation centre and receive an admission at a lower age ever, this should be confirmed after the actual imple- (generally at 3–6 years), the inclusion of participants in mentation, which starts in 2017. the other age categories took longer than expected. For Conducting pilot studies and reporting the results is example, only one PAI-CY 13–17 years was adminis- important, as they are a crucial part of the study design tered during the regular admission, and only one evalu- and can provide valuable information for the larger field ation form from the professional was available for this study and for other researchers [26, 27]. However, due Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 10 of 12 Table 5 Items that were added to or removed from the contributes to the content and face validity of the ques- questionnaires (item – domain) tionnaires. Although a large number of floor effects was PAI-CY 0–2 years found in all our questionnaires, the deletion of items � Looking at something from a distance – Visual attention was done with utmost consideration and reluctance be- � Seeing objects in the visual field – Sensorial functioning cause of the small sample sizes. The identification of PAI-CY 3–6 years � Completing tasks – Incentive processing floor and ceiling effects requires replication in a larger � Being free in movement – Mobility sample. Our small sample size does not allow to thor- � Cycling – Mobility oughly evaluate the psychometric properties of the PAI- � Participating in traffic – Mobility � Participating in physical education – Mobility CY and PAI-YA. Because questionnaire development � Playing outdoors – Mobility often employs factor analysis to assess item structure � Participating in sports – Mobility and determine the quality of a questionnaire, we plan to � Talking – Communication � Recognizing pictures – Reading and writing replicate this protocol using factor analysis and item re- � Interest in characters – Reading and writing sponse theory in a larger study population. � Recognizing characters – Reading and writing In line with the admission procedure for adults, and as � Initial reading – Reading and writing � Initial writing – Reading and writing a clinical implication for this study, low vision rehabilita- PAI-CY 7–12 years tion centres in the Netherlands are planning to use the � Gaming – Leisure time PAI-CY and PAI-YA to make their admission procedures � Watching TV – Leisure time � Participating in sports clubs – Leisure time for children/young adults more structured and objective. � Making music – Leisure time With additional psychometric testing, the PAI-CY and � Performing hobbies – Leisure time PAI-YA have great potential for use in identifying re- PAI-CY 13–17 years � Gaming – Leisure time habilitation needs and contributing to the rehabilitation � Watching TV – Leisure time plan for children and young adults. Professionals can use � Participating in sports clubs – Leisure time the questionnaires to get an assessment of a client’s � Making music – Leisure time � Performing hobbies – Leisure time abilities, limitations, and needs and wishes related to � Brushing teeth – Self-reliance participation and activities. Based on this assessment, re- � Going to the bathroom – Self-reliance habilitation programmes can be discussed with the client � Showering/bathing – Self-reliance PAI-YA 18–25 years to ameliorate these limitations. The PAI-CY and PAI-YA � Driving a scooter – Mobility also have potential to evaluate the effectiveness of rehabili- � Driving a car – Mobility tation when administered pre and post-rehabilitation in- � Dealing with steps and stairs – Mobility � Being aware of regulations regarding driving – Mobility terventions; improved scores at the end of a rehabilitation � Following a concert or show in a theatre – Leisure time programme will be indicative of positive rehabilitation � Listening to music – Leisure time outcomes. Finally, the PAI-CY and PAI-YA could be useful � Brushing teeth – Self-care � Being informed about new developments – Computer skills as tools in participation research; e.g. they could be used � Knowing what to expect when having a relationship – Intimate/ as an outcome measure in an intervention to increase par- romantic relationships ticipation in visually impaired children or young adults. � Not standing out as different – Acceptance/self-consciousness Items indicated in bold/italic were removed; all other items were added Conclusions This pilot study is an initial, critical step in the valid- to the small sample size, the results of the present study ation of the PAI-CY and PAI-YA. Although parents, need to be interpreted with caution. Guidance on sample children and young adults were mostly satisfied with sizes for pilot studies is rather limited; general guidelines the questionnaires, professionals showed less satisfac- recommend to use about 10 participants [28] or 10% of tion. Nevertheless, the PAI-CY and PAI-YA were con- the final study size [29]. Increasing the sample size of sideredtoinclude themostrelevanttopics, andmostof the present pilot study would have extended the study the items and response categories were clear to the period, which already took longer than expected. Fur- users. Furthermore, the PAI-CY and PAI-YA seem to be thermore, it would make it even more difficult to find feasible for use in the regular admission procedure of sufficient participants for the field study; this is already Dutch rehabilitation centres. The adaptations made to challenging because of the (overall) small size of this the PAI-CY and PAI-YA after the pilot study are likely population. Moreover, conducting pilot studies with to improve satisfaction with the content, the clar- even a few participants can be very informative in terms ification of questions, and satisfaction with the ques- of assessing feasibility of the procedures, ensuring clarity tionnaires with regard to compiling a rehabilitation of the wording, and acceptability of the formats [30]. plan. Although face and content validity have been op- Clustering of items into domains based on previous timized, a larger field study is taking place to further studies [4, 5] was supported by the present study, which develop the PAI-CY and PAI-YA and assess their Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 11 of 12 properties as a quantitative instrument to reliably assess 4. Rainey L, Elsman EB, van Nispen RM, van Leeuwen LM, van Rens GH. Comprehending the impact of low vision on the lives of children and rehabilitation needs and monitor outcomes of children/ adolescents: a qualitative approach. Qual Life Res. 2016;25:2633–43. young adults with a visual impairment seeking rehabili- 5. Elsman EBM, Van Rens GHMB, Van Nispen RMA. Impact of visual impairment tation services. on the lives of young adults in the Netherlands: a concept-mapping approach. Disabil Rehabil. 2016. doi:10.1080/09638288.2016.1236408. Abbreviations 6. Langelaan M, de Boer MR, van Nispen RM, Wouters B, Moll AC, van Rens ICF: International Classification of Functioning, Disability and Health; GH. Impact of visual impairment on quality of life: a comparison with PAI: Participation and Activity Inventory; PAI-CY: Participation and Activity quality of life in the general population and with other chronic conditions. Inventory – Children and Youth; PAI-YA: Participation and Activity Inventory Ophthalmic Epidemiol. 2007;14:119–26. – Young Adults; WHO: World Health Organization 7. Seland JH, Vingerling JR, Augood CA, Bentham G, Chakravarthy U, deJong PT, Rahu M, Soubrane G, Tomazzoli L, Topouzis F, Fletcher AE. Visual Acknowledgements impairment and quality of life in the older European population, the We greatly thank all participating parents, children, adolescents, young adults EUREYE study. Acta Ophthalmol. 2011;89:608–13. and professionals for their contributions. We gratefully acknowledge Alwine 8. Chavda S, Hodge W, Si F, Diab K. Low-vision rehabilitation methods in van der West for her work on this pilot study during her scientific internship. children: a systematic review. Can J Ophthalmol. 2014;49:e71–3. 9. Cochrane G, Lamoureux E, Keeffe J. Defining the content for a new Funding quality of life questionnaire for students with low vision (the Impact A grant for this study was provided by Royal Dutch Visio. The sponsor had of Vision Impairment on Children: IVI_C). Ophthalmic Epidemiol. 2008; no role in 1) study design; 2) the collection, analysis, and interpretation of 15:114–20. data; 3) the writing of the report; and 4) the decision to submit the paper for 10. Rainey L, van Nispen R, van der Zee C, van Rens G. Measurement properties publication. of questionnaires assessing participation in children and adolescents with a disability: a systematic review. Qual Life Res. 2014;23:2793–808. Availability of data and materials 11. Van Leeuwen LM, Rainey L, Kef S, Van Rens GHMB, Van Nispen RMA. The datasets used and/or analysed during the current study are available Investigating rehabilitation needs of visually impaired young adults from the corresponding author on reasonable request. according to the International Classification of Functioning, Disability and Health. Acta Ophthalmol. 2015;93:642–50. Authors’ contributions 12. Rainey L, van Nispen R, van Rens G. Evaluating rehabilitation goals of EE carried out the data collection, analysed the data and drafted the visually impaired children in multidisciplinary care according to ICF-CY manuscript; RvN participated in the design of the study, carried out part of guidelines. Acta Ophthalmol. 2014;92:689–96. the data collection, and revised and approved the final draft of the 13. Bruijning J, van Nispen R, Verstraten P, van Rens G. A Dutch ICF Version of manuscript, and GvR participated in the design of the study, revised and the Activity Inventory: Results from Focus Groups with Visually Impaired approved the final manuscript. Persons and Experts. Ophthalmic Epidemiol. 2010;17:366–77. 14. Bruijning JE. Implementation and application of the D-AI, Development of Competing interests the Dutch ICF Activity Inventory: investigating and evaluating rehabilitation The authors declare that they have no competing interests. needs of visually impaired adults. 2013. 15. Massof RW, Ahmadian L, Grover LL, Deremeik JT, Goldstein JE, Rainey C, Consent for publication Epstein C, Barnett GD. The activity inventory: An adaptive visual function Not applicable. questionnaire. Optom Vis Sci. 2007;84:763–74. 16. WHO. International Classification of Functioning, Disability and Health. Ethics approval and consent to participate Geneva: World Health Organization; 2001. The study protocol was approved by the Medical Ethical Committee of the 17. Arnett JJ. Emerging adulthood: the winding road from the late teens VU University Medical Centre, Amsterdam. This study was performed in through the early twenties. Oxford: Oxford University Press; 2004. accordance with the ethical standards as laid down in the Declaration of 18. Bruijning J, van Nispen R, Knol D, van Rens G. Low Vision Helsinki and its later amendments. Informed consent was obtained from all Rehabilitation Plans Comparing Two Intake Methods. Optom Vis Sci. participants, including children aged 13 years and older and their parents. 2012;89:203–14. Furthermore, informed consent was obtained from parents of children 19. Buchbinder R, Batterham R, Elsworth G, Dionne CE, Irvin E, Osborne RH. A below the age of 13 years. validity-driven approach to the understanding of the personal and societal burden of low back pain: development of a conceptual and measurement model. Arthritis Res Ther. 2011;13:R152. Publisher’sNote 20. De Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in Medicine: a Springer Nature remains neutral with regard to jurisdictional claims in practical guide. New York: Cambridge University Press; 2011. published maps and institutional affiliations. 21. WHO. ICD-10: International statistical classification of diseases and related health problems, 10th revision. Geneva: World Health Organization; 1994. Author details 22. Van Rens GHMB, Vreeken HL, Van Nispen RMA. Guideline visual impairment, Department of Ophthalmology, VU University Medical Centre and the rehabilitation and referral [Richtlijn visusstoornissen, revalidatie en Amsterdam Public Health research institute, PO Box 70571007 MB verwijzing]. Nijmegen: Dutch Society of Ophthalmology [Nederlands Amsterdam, The Netherlands. Department of Ophthalmology, Elkerliek Oogheelkundig Gezelschap]; 2011. Hospital, Wesselmanlaan 25, 5707 HA Helmond, The Netherlands. 23. de Veer AJ, Fleuren MA, Bekkema N, Francke AL. Successful implementation of new technologies in nursing care: a questionnaire survey of nurse-users. Received: 16 November 2016 Accepted: 5 May 2017 BMC Med Inform Decis Mak. 2011;11:67. 24. Cresswell KM, Bates DW, Sheikh A. Ten key considerations for the successful implementation and adoption of large-scale health information technology. References J Am Med Inform Assoc. 2013;20:e9–e13. 1. Keunen JEE, Verezen CA, Imhof SM, Van Rens GHMB, Asselbergs MB, 25. Collins D. Pretesting survey instruments: an overview of cognitive methods. Limburg JJ. Toename in de vraag naar oogzorg in Nederland 2010–2020. Qual Life Res. 2003;12:229–38. Ned Tijdschr Geneeskd. 2011;155:A3461. 2. Boonstra N, Limburg H, Tijmes N, van Genderen M, Schuil J, van Nispen R. 26. Van Teijlingen ER, Rennie AM, Hundley V, Graham W. The importance of Changes in causes of low vision between 1988 and 2009 in a Dutch conducting and reporting pilot studies: the example of the Scottish Births population of children. Acta Ophthalmol. 2012;90:277–86. Survey. J Adv Nurs. 2001;34:289–95. 3. Salminen AL, Karhula ME. Young persons with visual impairment: 27. van Teijlingen E, Hundley V. The importance of pilot studies. Nurs Stand. Challenges of participation. Scand J Occup Ther. 2014;21:267–76. 2002;16:33–6. Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 12 of 12 28. Nieswiadomy RM. Foundations of nursing research. 4th ed. New Jersey: Pearson Education; 2002. 29. Lackey NR, Wingate AL. The pilot study: One key to research success. In: Brink PJ, Woods MJ, editors. Advances design in nursing research. 2nd ed. California: Sage; 1998. 30. Hertzog MA. Considerations in determining sample size for pilot studies. Res Nurs Health. 2008;31:180–91. 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Feasibility of the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) with a visual impairment: a pilot study

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Springer Journals
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Copyright © 2017 by The Author(s).
Subject
Medicine & Public Health; Quality of Life Research; Quality of Life Research
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1477-7525
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10.1186/s12955-017-0677-x
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28490332
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Abstract

Background: Having a visual impairment affects quality of life, daily functioning and participation. To assess rehabilitation needs of visually impaired children and young adults, the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) were developed. The PAI-CY comprises four questionnaires for different age categories: 0–2 years, 3–6 years, 7–12 years and 13–17 years. This pilot study assesses the feasibility and acceptability of the PAI-CY and PAI-YA, and the relevance of the content of the questionnaires. Methods: In addition to the regular admission procedure, the PAI-CY and PAI-YA were completed by 30 participants (six per questionnaire). For the PAI-CY, parents completed the questionnaire online prior to admission. From age 7 years onwards, children completed the questionnaire face-to-face with a rehabilitation professional during the admission procedure. Young adults completed the PAI-YA online. Subsequently, participants and professionals administered an evaluation form. Results: Overall, 85% of the parents rated all aspects of the PAI-CY neutral to positive, whereas 100% of all children and young adults were neutral to positive on all aspects, except for the duration to complete. The main criticism of professionals was that they were unable to identify actual rehabilitation needs using the questionnaires. Minor adjustments were recommended for the content of questions. Conclusions: Parents, children and young adults were mostly satisfied with the questionnaires, however, professionals suggested some changes. The adaptations made should improve satisfaction with content, clarification of questions, and satisfaction with the questionnaires in compiling a rehabilitation plan. Although face and content validity has been optimized, a larger field study is taking place to further develop and evaluate the questionnaires. Keywords: Visual impairment, Children, Adolescents, Young adults, Pilot study, Participation and Activity Inventory (PAI) * Correspondence: [email protected] Department of Ophthalmology, VU University Medical Centre and the Amsterdam Public Health research institute, PO Box 70571007 MB Amsterdam, The Netherlands Full list of author information is available at the end of the article © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 2 of 12 Background and systematic way, the Participation and Activity Inven- Although no accurate prevalence data are available on tory (PAI) was developed and implemented in the visually impaired children aged 0–17 years and young Netherlands [13, 14]. The PAI is based on the Activity adults aged 18–25 years in the Netherlands, visual Inventory of Massof et al. [15] and the nine domains of impairments are estimated to affect 2600 children aged the Activity and Participation component of the Inter- 0–14 years [1]. In the Netherlands, most visual impair- national Classification of Functioning, Disability and ments in children and young adults are due to develop- Health (ICF) from the World Health Organization mental and (rare) genetic disorders, with the most (WHO) [16]. The domains of the PAI are similar to the common diagnoses being cerebral visual impairment, al- domains of the Activity and Participation chapter of the binism and nystagmus [2]. Visual impairments impact ICF, i.e. learning and applying knowledge; general tasks the participation of children and young adults [3–5] as and demands; communication; mobility; self-care; do- well as their daily functioning and quality of life [6, 7]; mestic life; interpersonal interactions and relationships; these impairments can also cause social isolation which major life areas; and community, social and civic life. (over time) can lead to lowered self-esteem and depres- The content of the PAI focuses on the needs of adults sion [8, 9]. Since there is no general consensus on the and is, therefore, not applicable to identify the needs of definition of participation in children and those with an children aged 0–17 years, since needs develop with in- impairment [10], patient record studies were conducted creasing age [4, 12]. Moreover, the life stage of young in order to evaluate the rehabilitation goals of children adults aged 18–25 years is characterized by the transi- and young adults with a visual impairment [11, 12]. tion of becoming an adult, with a growing need for inde- These studies found that challenges most frequently pendence and autonomy [17], making the extensive faced by children are related to learning and applying content of the PAI less applicable. Because multidiscip- knowledge, mobility, and major life areas (although goals linary rehabilitation centres currently lack an instru- related to other participation domains may be underrep- ment to identify the needs of children and young resented) [12]. Young adults most frequently face chal- adults, they are dependent on their own knowledge lenges related to mobility, domestic life, communication, and expertise when creating an inventory of needs. interpersonal interaction/relationships, general tasks/de- Relying solely on the personal expertise of low vision mands, major life areas and leisure activities [11]. professionals (e.g. social workers, occupational therapists, Furthermore, concept-mapping studies have been con- educational and developmental psychologists) carries a ducted with children, parents and professionals from risk of bias and an underrepresentation of needs [11, 18]. low vision rehabilitation centres to get more insight into Furthermore, incorrect identification of rehabilitation the impact of a visual impairment on activities and par- needs might influence referral to rehabilitation pro- ticipation [4, 5]. In children, it was found that low vision grammes and the quality of care provided [19]. affects sensorial development and physical, psycho- Therefore, we developed PAI questionnaires to assess logical, and social well-being. However, external factors the needs of visually impaired children and youth aged 0– such as educational type and parental influence either 17 years (PAI-CY), and young adults aged 18–25 years facilitate or hinder participation. Furthermore, because (PAI-YA). To aid interpretation of the PAI-CY, four differ- of the rapid development of children, each life stage has ent age categories were formed based on the WHO cri- different aspects which are most influenced by the visual teria: 0–2 years (infants and toddlers), 3–6years impairment. For example, the attachment process most (preschool children), 7–12 years (school-aged children), crucially influenced the first life years, whereas mobility and 13–17 years (adolescents). For each age category, a and general development were most important for pri- different PAI-CY was developed, which differs in the do- mary school-aged children [4]. Having a visual impair- mains covered and the number of items included. ment as a young adult affects various life-aspects related An important step in the ongoing development, to participation, including activities related to work, validation and implementation of the PAI-CY and study, social skills and relationships, activities of daily PAI-YA is to perform a pilot study [20]. The present living, leisure time and mobility. Especially activities re- pilot study is part of a larger validation study, and lated to study and work were considered important by aims to assess the feasibility and acceptability of the young adults [5]. These studies also contributed to oper- PAI-CY and PAI-YA in the regular admission pro- ationalizing the construct of participation for these pop- cedure: i.e. to evaluate whether use of the question- ulations further. naires in practice is workable and whether the Low vision rehabilitation centres can help visually im- questionnaires are acceptable to both clients and paired children and young adults to identify their needs professionals. Another aim is to determine whether and become more self-reliant by offering rehabilitation. relevant topics are included and whether all items To assess rehabilitation needs of adults in an objective and response categories are clear. For this purpose, Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 3 of 12 clients and rehabilitation professionals were asked for the study criteria above, participants had to have suffi- their perceptions and experiences after using the PAI-CY cient knowledge and understanding of the Dutch lan- and PAI-YA. guage and adequate cognitive abilities. The study protocol was approved by the Medical Eth- Methods ical Committee of the VU University Medical Centre, Development of the PAI-CY and PAI-YA Amsterdam. This study was performed in accordance The most important stakeholders were involved in the with the ethical standards as laid down in the Declar- development of the PAI-CY and the PAI-YA, thereby ation of Helsinki and its later amendments. Informed largely contributing to the content and face validity of consent was obtained from all participants, including the questionnaires. children aged 13 years and older and their parents. Fur- For the PAI-CY these were professionals of low vision thermore, informed consent was obtained from parents rehabilitation centres, and parents of children aged 0–17 of children below the age of 13 years. years and children aged 7–17 years. For the development of the PAI-YA, professionals of low vision rehabilitation centres and young adults aged 18–25 years were in- Data collection volved. The most suitable method for each stakeholder The PAI-CY was administered as part of the regular was chosen: parents received an online questionnaire, admission procedure of low vision rehabilitation cen- focus group discussions and semi-structured interviews tres. Parents with a child in one of the age categories were held with children aged 7–17 years, and concept- of the PAI-CY completed the corresponding que- mapping workshops were organised for professionals stionnaire online in advance of the admission proced- and young adults aged 18–25 years. All methods aimed ure by the rehabilitation service. Children aged 7–17 at generating statements regarding activities a child/young years completed the corresponding questionnaire adult with a visual impairment would like to participate face-to-face with a rehabilitation professional of a low in. For the PAI-CY, the results from questionnaires, focus vision rehabilitation centre during the admission pro- groups, interviews and concept-mapping were combined cedure. Immediately after assessing the PAI-CY, par- in a conceptual model, which contributed to the develop- ents and children were asked to fill in an evaluation ment of the PAI-CY questionnaires [4]. For the PAI-YA, form about the PAI-CY and its assessment, aimed at concept-maps of professionals and young adults, and the determining and improving acceptability and feasibil- combined concept-map, contributed to the development ity of the PAI-CY. The professional involved in the of the PAI-YA questionnaire [5]. admission procedure was also asked to complete an The PAI-CY and PAI-YA consist of activities divided evaluation form about the PAI-CY for the question- into different domains, e.g. play, self-reliance, mobility, naire filled in by parents, and, if applicable, about the communication, social relationships, day-care/school/ questionnaire filled in by children. Due to a longer study, leisure time and acceptance/self-consciousness than expected inclusion period, the first author also (see Table 2 for a complete overview of the domains per administered the PAI-CY to a small number of partici- questionnaire). Each item is scored on a 4-point scale pants; these participants were already enrolled in care with the response options: not difficult (0), slightly diffi- from low vision rehabilitation centres. Children were vis- cult (1), very difficult (2), impossible (3). The response ited at their home to administer the PAI-CY, whereas par- options ‘Not applicable’ and ‘I don’t know’ were treated ents completed the questionnaire online. as a missing value. The PAI-YA was also tested with young adults who were already enrolled in care from low vision rehabili- Participants tation centres; they also completed the PAI-YA and Participants with a visual impairment were recruited evaluation form online. Parents and young adults filled from two low vision rehabilitation centres in the in questions about demographic characteristics, such Netherlands, Royal Dutch Visio and Bartiméus. All par- as date of birth (of their child), sex (of their child), na- ticipants met the study criteria when they were aged be- tionality, and educational level. In addition, parents tween 0 and 25 years and fulfilled the criteria for visual were asked which parent administered the question- impairment according to the WHO [21]. Furthermore, naire e.g. mother, father or together, their marital participants were considered to meet the study criteria status and whether their child had siblings. Partici- when they were eligible for care in a low vision rehabili- pants’ clinical characteristics, such as visual acuity and tation centre according to Dutch rehabilitation referral diagnosis were retrieved from their medical file. All guidelines, i.e. when the visual impairment caused limi- questionnaires were entered in an internet-based tations in activities of daily living that could not be questionnaire programme where no missing values solved by regular healthcare services [22]. In addition to were allowed. Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 4 of 12 Statistical analysis Results Descriptive statistics were calculated for demographic Participant characteristics variables of participants, including age, gender, informa- A total of 30 respondents participated in this study. Each tion regarding eye condition and visual acuity, and PAI-CY was filled in by six parents of children with a which parent filled in the questionnaire on behalf of the visual impairment. Simultaneous measurements were parents. Responses to the PAI-CY and PAI-YA were ex- taken from 12 children in the age categories 7–12 years amined to indicate floor and ceiling effects. Floor and and 13–17 years. For the age categories 0–2 years, 3–6 ceiling effects were considered present when at least five years, 7–12 years and 13–17 years, five, six, four and out of six participants rated the lowest or highest score one parent (and child), respectively, completed the PAI- possible, respectively (i.e. ‘not difficult’ and ‘impossible’). CY as part of the regular admission procedure. All other Furthermore, mean difficulty scores were calculated per participants did not complete the PAI-CY as part of their domain and age category, using the mean domain diffi- regular admission, as they were already in care at low vi- culty for each respondent. The mean domain difficulty sion rehabilitation centres, and questionnaires were ad- for each respondent was calculated when at least 50% of ministered by the researcher instead. the items in that domain were scored. Data were ana- In total, 17 evaluation forms were available from profes- lysed using SPSS version 22.0. sionals, as four of them did not compete (both) evaluation Furthermore, satisfaction regarding the PAI-CY and forms. Subsequently, six young adults who were already PAI-YA was assessed using the evaluation forms of par- receiving care filled in the PAI-YA. Table 1 presents char- ents, children and professionals. If possible, qualitative acteristics of the participants. Ophthalmic diagnoses are data from the evaluation forms which were similar were classified according to eye structure affected by the disease combined. Based on the results of this study, each item because there was a large variation in ophthalmic diagno- of the PAI questionnaire was discussed and consensus ses. Examples of cerebral diagnoses are cerebral visual between the first and the second author was reached in impairment and cerebral palsy, whereas examples of ret- order to develop an improved version of the PAI-CY inal diagnoses are hyperopia, retinitis pigmentosa and and PAI-YA. Stargardt’s disease. Table 1 Characteristics of the participants by age group PAI-CY 0–2 PAI-CY 3–6 PAI-CY 7–12 PAI-CY 13–17 PAI-YA 18–25 Age in years Mean (range) 19.3 (8–30) 4.5 (3–6) 9.8 (8–12) 15 (13–17) 22 (18–26) Sex Male, N (%) 3 (50) 5 (83.3) 4 (66.7) 5 (83.3) 1 (16.7) Visual acuity Blind, N (%) 1 (17%) 1 (17%) 1 (17%) Low vision, N (%) 3 (50%) 3 (50%) 5 (83%) 5 (83%) 5 (83%) Unknown, N (%) 3 (50%) 3 (50%) Ophthalmic diagnosis Cerebral, N (%) 2 (33.3%) 2 (33.3%) 1 (16.7%) 1 (16.7%) 1 (16.7%) Retinal, N (%) 1 (16.7%) 5 (83.3%) 3 (50%) 4 (66.7%) Lens, N (%) 1 (16.7%) Optic, N (%) 1 (16.7%) 1 (16.7%) Unknown, N (%) 3 (50%) 3 (50%) 1 (16.7%) Proxy parents Mother, N (%) 2 (33.3%) 4 (66.7%) 6 (100%) 4 (66.7%) Father, N (%) 2 (33.3%) 1 (16.7%) 1 (16.7%) Together, N (%) 2 (33.3%) 1 (16.7%) 1 (16.7%) Duration in minutes Mean (range) 13.3 (5–25) 21.7 (15–45) 16.7 (5–25) 14.2 (10–20) 45.8 (30–90) Age in months instead of years Blind: visual acuity ≤ 0.05 and/or visual field ≤ 10° Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 5 of 12 Responses to the PAI-CY and PAI-YA PAI-CY (Table 4). Although over 80% of the profes- Response category frequencies were calculated for each sionals were neutral to positive regarding insight into questionnaire. Only floor effects were found and these possibilities and limitations of the client using the PAI- were present in all questionnaires. In the PAI-CY 0–2 CY, about 50% of the professionals were negative about year, floor effects were present in only one item (2%) re- the insight gained of rehabilitation needs and the identi- lated to raising the head. In the PAI-CY 3–6 years, floor fication of additional rehabilitation needs using the ques- effects were present in 25% of the items; these were re- tionnaires. Furthermore, almost 80% of the professionals lated to various domains and tasks, e.g. recognising fa- rated the questionnaires’ ability to clarify rehabilitation cial expressions, talking, recognising colours, and eating needs negatively (Table 4). independently. Floor effects were present in 12 and 16% Five parents missed some items in the questionnaires, of the items in the PAI-CY 7–12 years administered by e.g. regarding visual field functioning (0–2 years), energy parents and children, respectively. Floor effects of par- management (7–12 years), computer/IT and smartphone ents and children partly overlapped and were, for ex- use (7–12 years), functioning in extracurricular activities ample, found in participating in group activities, playing (7–12 years) and use of visual aids (13–17 years). Two imaginary games, telling your parents about activities, children indicated they missed items regarding swimming finding your way in school, going to the bathroom, and (7–12 and 13–17 years) and one child regarding self-care actively participating in a conversation. Floor effects (13–17 years). Three young adults indicated items that were found in 6 and 20% of the items in the PAI-CY were lacking, e.g. regarding coping with stairs and steps, 13–17 years administered by parents and children, re- travelling to unknown locations, and approaching some- spectively, which also partly overlapped. Floor effects one you like. Two professionals stated the PAI-CY 3–6 were found, for example, in using social media, search- years was more applicable for children aged 3 years than ing for information, doing the dishes, and asking ac- for children aged 6 years, and professionals lacked items quaintances for help. In the PAI-YA 18–25 years, floor regarding reading and writing, behaviour at school, orien- effects were found in 30% of the items, e.g. finding visual tation and mobility, and completing tasks in this question- aids, cooking, managing finances, taking medication, naire. Two professionals lacked information about the using the computer, inviting friends, dating, planning a course of pregnancy, childbirth and development in the daytrip, listening to music, and expressing feelings. first years of life. Further assessment of the mean difficulty (overall pos- Parents, young adults and professionals also gave sug- sible range: 0–3) showed that domains in the PAI-CY 0– gestions for the deletion or clarification of some items. 2 years ranged from 0.6 to 1.5 in difficulty, and domains Young adults mentioned that some items needed re- in the PAI-CY 3–6 years ranged from 0.1 to 1.5 in diffi- phrasing to make a distinction between activities per- culty. According to parents, domains in the PAI-CY 7– formed independently or with others. Furthermore, two 12 years ranged from 0.4 to 1.1 in difficulty while items (not standing out as different, and being aware of according to children difficulty ranged from 0.3 to 0.9. regulations regarding vehicle driving) were indicated as The mean difficulty of domains in the PAI-CY 13–17 unclear by young adults. One young adult indicated the years ranged from 0.6 to 1.1 according to parents and domain intimate/romantic relationships was not related 0.2–0.8 according to children. On average, children rated to having a visual impairment. Professionals mentioned the difficulty of all domains lower than their parents, ex- lack of information on the distance (e.g. looking at cept for the domains finances and leisure time by chil- something directly) in the PAI-CY 0–2 years and co- dren aged 7–12 years. Mean difficulty of domains in the nfusion about the interpretation regarding two items PAI-YA 18–25 years ranged from 0.1 to 0.8. Table 2 pre- (participating in birthday parties, and finding the way in sents the most important characteristics of the domains school) in the PAI-CY 3–6 years. in each questionnaire. Based on the comments and suggestions of partici- pants and professionals, adaptations were made to the Evaluation of the PAI-CY and the PAI-YA questionnaires with the aim to improve feasibility in The evaluation forms of parents indicated that over 85% practice and acceptability to clients and professionals. In of the parents rated all aspects of the PAI-CY neutral to all questionnaires, after each domain an item was added positive (Table 3). All children and young adults also to clarify the rehabilitation needs (Do you have any rated all aspects of the PAI-CY and PAI-YA neutral to questions for the rehabilitation centre regarding the positive, except for the duration to fill in the question- topic … or would you like to receive rehabilitation for naire. According to participants, the questionnaire was this?). Furthermore, in all questionnaires items were clear, easy to use, and helps to get a first impression be- added, and one and six items were removed in the PAI- fore talking to a professional about rehabilitation needs CY 3–6 years and the PAI-YA, respectively. Two do- (Table 3). Professionals were more critical regarding the mains (mobility, and reading and writing) were added in Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 6 of 12 the PAI-CY 3–6 years, and the order of the domains in perceived as most intrusive, and therefore placed at the the PAI-CY 13–17 years and the PAI-YA were slightly end of the questionnaire. In all questionnaires, some adapted based on the comments of participants. For the items were rephrased, or examples were added or ad- PAI-CY 13–17 years, adolescents did not like to start justed for clarification purposes. After all additions and with the mobility domain, because items in this domain deletions, the final PAI-CY 0–2 contains 44 items, the are generally perceived as most difficult. Therefore, it PAI-CY 3–6 years 62 items, the PAI-CY 7–12 years 55 was chosen to start with leisure time, which was per- items and the PAI-CY 13–17 tears 58 items, which are ceived as easier and more fun to start with. For the PAI- respectively 2, 11, 5 and 8 items more than the pilot ver- YA, the domain acceptance/self-consciousness was sions. The final version of the PAI-YA contains 141 Table 2 Domain characteristics for each PAI questionnaire Domain in PAI- PAI-CY 0–2 PAI-CY 3–6 PAI-CY 7–12 CY/PAI-YA No. of Domain Mean No. of Domain No. of Domain Mean No. of Domain No. of Domain Mean Mean items order difficulty items order items order difficulty items order items order difficulty difficulty pilot pilot PAI parent final final PAI pilot pilot PAI parent final final PAI pilot pilot PAI parent child (SD) PAI (SD) PAI PAI (SD) PAI PAI (SD) Bonding 6 1 0.8 (0.9) 6 1 5 1 0.3 (0.2) 5 1 Incentive 4 2 1.0 (0.9) 4 2 3 2 0.4 (0.3) 4 2 processing Visual attention 4 3 1.2 (1.1) 5 3 4 3 0.8 (0.4) 4 3 Sensorial 12 8 1.5 (0.8) 13 8 10 11 1.5 (0.8) 10 13 functioning Orientation 2 4 1.3 (1.3) 2 4 3 4 0.7 (0.5) 3 4 Motor 2 7 1.3 (0.6) 2 8 functioning Reading and 511 writing Play 5 5 1.1 (1.0) 5 5 3 5 0.7 (0.8) 3 6 3 1 0.6 (0.5) 0.6 (0.4) Self-reliance 4 10 0.8 (0.5) 4 12 5 7 0.6 (0.5) 0.3 (0.3) Finances 1 9 0.4 (0.5) 0.7 (0.8) Mobility 7 6 0.6 (0.9) 7 6 6 5 4 3 1.0 (0.4) 0.8 (0.7) Communication 2 7 0.8 (1.3) 2 7 5 8 0.1 (0.2) 4 9 12 5 0.7 (0.3) 0.6 (0.5) Social 6 6 1.1 (0.6) 6 7 6 2 0.5 (0.5) 0.3 (0.3) relationships Day-care/ 6 9 0.9 (0.4) 6 10 11 6 0.9 (0.4) 0.6 (0.6) school/study Leisure time 3 4 0.5 (0.4) 0.7 (0.9) Acceptance/ 5 8 1.1 (0.5) 0.9 (1.0) self- consciousness Reading and visual aids Household Living independent/ finances Self-care Computer skills Intimate/ romantic relationships Peer contact Holiday and going out Information/ regulations Applying Work Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 7 of 12 Table 2 Domain characteristics for each PAI questionnaire (Continued) Domain in PAI- PAI-CY 7–12 PAI-CY 13–17 PAI-YA 18–25 CY/PAI-YA No. of Domain No. of Domain Mean Mean No. of Domain No. of Domain Mean No. of Domain items order items order difficulty difficulty items order items order difficulty items order final PAI final PAI pilot PAI pilot PAI parent child (SD) final PAI final PAI pilot PAI pilot PAI young adult final PAI final PAI (SD) (SD) Bonding Incentive processing Visual attention Sensorial functioning Orientation Motor functioning Reading and writing Play 3 1 Self-reliance 5 7 7 6 0.6 (0.7) 0.2 (0.3) 10 6 Finances 1 9 1 8 0.7 (1.2) 0.3 (0.8) 1 8 Mobility 4 3 7 1 1.1 (1.2) 0.8 (0.8) 7 2 14 5 0.7 (0.4) 16 2 Communication 12 5 11 4 0.8 (0.8) 0.4 (0.4) 11 4 11 13 0.3 (0.2) 11 12 Social 6 2 7 3 0.9 (0.8) 0.5 (1.0) 7 3 11 7 0.5 (0.3) 11 9 relationships Day-care/school/ 11 6 9 5 0.8 (0.4) 0.5 (0.4) 9 5 8 15 0.7 (0.4) 8 14 study Leisure time 8 4 4 2 1.0 (1.0) 0.6 (0.5) 9 1 11 11 0.3 (0.1) 11 7 Acceptance/self- 5 8 4 7 0.9 (0.9) 0.5 (0.6) 4 7 8 12 0.6 (0.2) 7 17 consciousness Reading and 5 1 0.8 (0.4) 5 1 visual aids Household 7 2 0.3 (0.2) 7 5 Living 8 3 0.2 (0.2) 8 4 independent/ finances Self-care 8 4 0.3 (0.1) 7 6 Computer skills 9 6 0.2 (0.2) 8 3 Intimate/ 4 8 0.1 (0.1) 3 10 romantic relationships Peer contact 6 9 0.4 (0.6) 6 11 Holiday and 11 10 0.4 (0.5) 11 8 going out Information/ 12 14 0.6 (0.7) 12 13 regulations Applying 4 16 0.4 (0.3) 4 15 Work 6 17 0.5 (0.2) 6 16 items, which is 2 items less than its pilot version. Table 2 of responses, the results of the evaluation forms, and the provides a summary of the results and Table 5 presents comments and suggestions made by parents, children, the items that were added to or removed from the young adults and professionals. In general, most parents, questionnaires. children and young adults were satisfied with the con- tent of the PAI and the role the PAI could play in identi- Discussion fying the rehabilitation needs during or prior to an This pilot study can be considered an initial, critical step admission at a rehabilitation centre. Professionals were in the further development of the PAI-CY and PAI-YA. more critical, and stated that the PAI was not able to The questionnaires were modified based on the analysis identify rehabilitation needs, because it provides insight Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 8 of 12 Table 3 Evaluation of the PAI questionnaires by parents, children and young adults Item in evaluation questionnaire Rating Number of Number of Statements parents (%) children/young adults (%) Satisfaction with admission procedure + 16 (67%) 9 (75%) Questionnaire helps to get a first impression; everything was clear; ± 8 (33%) 3 (25%) clear questionnaire; easy to read - 0 (0%) 0 (0%) Insight in possibilities for rehabilitation + 11 (46%) 5 (83%) No further comments ± 12 (50%) 1 (17%) - 1 (4%) 0 (0%) Representativeness of problems in daily life + 7 (29%) 10 (56%) Nice that there is space for comments; everything was included; some items ± 14 (58%) 8 (44%) are very easy/for younger children - 3 (13%) 0 (0%) Difficulty to choose a response option + 18 (75%) 13 (72%) Need a response option between little difficult and very difficult; ± 4 (17% 5 (28%) don’t know some answers - 2 (8%) 0 (0%) Satisfaction with identification of rehabilitation + 14 (58%) 5 (83%) Makes you think about daily situation needs ± 10 (42%) 1 (17%) - 0 (0%) 0 (0%) Satisfaction with duration of completing forms + 19 (79%) 13 (72%) No further comments ± 5 (21%) 2 (11%) - 0 (0%) 3 (17%) Only children aged 7–17 years were asked Only young adults aged 18–25 years were asked Only children aged 13–17 years were asked only into the possibilities and limitations. Although this clarity of the items, and the addition/deletion of some approach is also used in the PAI for adults they are cur- items. Although professionals lacked information about rently working with [14], professionals apparently expe- the course of pregnancy, childbirth and development in rienced difficulty in: i) translating the information from the early years of life, questions about these topics were the questionnaires to the rehabilitation needs or goals, not added to the PAI-CY/PAI-YA because they do not and ii) selecting a corresponding rehabilitation interven- relate to activities and participation, but rather to health tion. Nevertheless, the question that was added to the conditions and/or personal factors which are often PAI regarding rehabilitation needs, should help profes- assessed at an earlier stage. sionals to better identify and translate the possibilities This study shows that the questionnaires also had im- and limitations revealed by the questionnaire into the in- portant positive qualities, which was confirmed by the dividual’s rehabilitation needs and goals. evaluation forms of the professionals. The availability of From the evaluation forms and the comments/sugges- questionnaires for both children and parents allows to tions made by parents, children, young adults and pro- compare their responses, a feature highly valued by pro- fessionals, the PAI-CY and PAI-YA were generally fessionals. However, due to the small sample size, it was considered to include the most relevant topics, and most not possible to compare agreement/concordance of chil- of the items were clear. The instructions for the ques- dren and parents; this will be assessed in future studies tionnaires were slightly adapted to clarify how the ques- with a larger sample size. Moreover, the questionnaire tionnaire should be administered, and also when the prevents important topics from being overlooked by the option ‘Not applicable’ should be selected. Furthermore, professional or client, as almost half of the professionals the language used in the questionnaires was modified to was able to identify additional rehabilitation needs when make it easier to understand by parents, children and using the PAI, which would (probably) not have been young adults (e.g. words such as rehabilitation needs/ identified when using an open interview. goals were replaced by words such as rehabilitation The more critical attitude of professionals towards the questions). Based on the suggestions of participants and PAI questionnaires was also reflected in the development professionals, minor changes were made to the content of the PAI for adults [14]. For successful implementation of the questionnaires, e.g. the order of the items, the of the PAI-CY and PAI-YA in the future, it is important Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 9 of 12 Table 4 Evaluation of the PAI questionnaires by professionals Item in evaluation questionnaire Rating Number of Statements professionals (%) Insight in rehabilitation needs client + 2 (12%) Gives insight in possibilities and limitations, but not in rehabilitation needs ± 7 (41%) - 8 (47%) Insight in possibilities and limitations client + 8 (47%) Nice questionnaire to go more into depth; responses to questionnaire give limited information; ± 6 (35%) good to have responses of parent and child - 3 (18%) Estimated perception of client regarding questionnaire + 12 (71%) Difficult to fill in for parents because of language use; some items are not applicable because of age; nice to ± 5 (29%) have comment boxes; unclear whether questionnaire should be filled in as using visual aids; response option - 0 (0%) don’t know is lacking Clarification of rehabilitation needs using questionnaire + 5 (29%) Unclear what rehabilitation wishes/needs are ± 0 (0%) - 12 (71%) Contribution in development rehabilitation plan + 0 (0%) No further comments ± 17 (100%) - 0 (0%) Satisfaction about duration + 14 (82%) No further comments ± 1 (6%) - 2 (12%) Correspondence available products to identified needs + 1 (6%) No further comments ± 12 (71%) - 4 (24%) Identification of additional rehabilitation needs + 6 (35%) Able to identify additional needs that would not have been identified using a semi-structured interview ± 2 (12%) - 9 (53%) that professionals are satisfied with the questionnaires. In- age category. Due to the lengthy inclusion period, the volvement of professionals at an early stage may provide first author administered the remainder of the question- better understanding of the relevance of implementation naires to children and young adults already receiving for themselves and their clients. Furthermore, early in- care from low vision rehabilitation centres and who were volvement of professionals in the implementation process participating in the larger validation study. Conse- might lead to identification of factors which can influence quently, only a limited number of evaluation forms were the future success of implementation [23, 24]. available from professionals, and only the feasibility of Although pilot studies are generally conducted using the PAI-CY for the age categories 0–12 years could be qualitative methods such as think-out-loud studies or confirmed with some conviction. Nevertheless, the pro- focus groups [20, 25], this pilot study also aimed to as- cedure for the PAI-CY 13–17 years is comparable to that sess the feasibility of the PAI-CY and PAI-YA within the of the PAI-CY 7–12 years, whereas the procedure of the regular admission procedure. Therefore, the PAI-CY was PAI-YA is comparable to that of the PAI-CY 0–6 years completed prior to (by parents) or during (by children) and the PAI for adults [14]. Thus, the results of this the admission procedure at a low vision rehabilitation study seem to support the feasibility of the PAI-CY and centre. Because most children are referred to a rehabili- PAI-YA within the regular admission procedure; how- tation centre and receive an admission at a lower age ever, this should be confirmed after the actual imple- (generally at 3–6 years), the inclusion of participants in mentation, which starts in 2017. the other age categories took longer than expected. For Conducting pilot studies and reporting the results is example, only one PAI-CY 13–17 years was adminis- important, as they are a crucial part of the study design tered during the regular admission, and only one evalu- and can provide valuable information for the larger field ation form from the professional was available for this study and for other researchers [26, 27]. However, due Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 10 of 12 Table 5 Items that were added to or removed from the contributes to the content and face validity of the ques- questionnaires (item – domain) tionnaires. Although a large number of floor effects was PAI-CY 0–2 years found in all our questionnaires, the deletion of items � Looking at something from a distance – Visual attention was done with utmost consideration and reluctance be- � Seeing objects in the visual field – Sensorial functioning cause of the small sample sizes. The identification of PAI-CY 3–6 years � Completing tasks – Incentive processing floor and ceiling effects requires replication in a larger � Being free in movement – Mobility sample. Our small sample size does not allow to thor- � Cycling – Mobility oughly evaluate the psychometric properties of the PAI- � Participating in traffic – Mobility � Participating in physical education – Mobility CY and PAI-YA. Because questionnaire development � Playing outdoors – Mobility often employs factor analysis to assess item structure � Participating in sports – Mobility and determine the quality of a questionnaire, we plan to � Talking – Communication � Recognizing pictures – Reading and writing replicate this protocol using factor analysis and item re- � Interest in characters – Reading and writing sponse theory in a larger study population. � Recognizing characters – Reading and writing In line with the admission procedure for adults, and as � Initial reading – Reading and writing � Initial writing – Reading and writing a clinical implication for this study, low vision rehabilita- PAI-CY 7–12 years tion centres in the Netherlands are planning to use the � Gaming – Leisure time PAI-CY and PAI-YA to make their admission procedures � Watching TV – Leisure time � Participating in sports clubs – Leisure time for children/young adults more structured and objective. � Making music – Leisure time With additional psychometric testing, the PAI-CY and � Performing hobbies – Leisure time PAI-YA have great potential for use in identifying re- PAI-CY 13–17 years � Gaming – Leisure time habilitation needs and contributing to the rehabilitation � Watching TV – Leisure time plan for children and young adults. Professionals can use � Participating in sports clubs – Leisure time the questionnaires to get an assessment of a client’s � Making music – Leisure time � Performing hobbies – Leisure time abilities, limitations, and needs and wishes related to � Brushing teeth – Self-reliance participation and activities. Based on this assessment, re- � Going to the bathroom – Self-reliance habilitation programmes can be discussed with the client � Showering/bathing – Self-reliance PAI-YA 18–25 years to ameliorate these limitations. The PAI-CY and PAI-YA � Driving a scooter – Mobility also have potential to evaluate the effectiveness of rehabili- � Driving a car – Mobility tation when administered pre and post-rehabilitation in- � Dealing with steps and stairs – Mobility � Being aware of regulations regarding driving – Mobility terventions; improved scores at the end of a rehabilitation � Following a concert or show in a theatre – Leisure time programme will be indicative of positive rehabilitation � Listening to music – Leisure time outcomes. Finally, the PAI-CY and PAI-YA could be useful � Brushing teeth – Self-care � Being informed about new developments – Computer skills as tools in participation research; e.g. they could be used � Knowing what to expect when having a relationship – Intimate/ as an outcome measure in an intervention to increase par- romantic relationships ticipation in visually impaired children or young adults. � Not standing out as different – Acceptance/self-consciousness Items indicated in bold/italic were removed; all other items were added Conclusions This pilot study is an initial, critical step in the valid- to the small sample size, the results of the present study ation of the PAI-CY and PAI-YA. Although parents, need to be interpreted with caution. Guidance on sample children and young adults were mostly satisfied with sizes for pilot studies is rather limited; general guidelines the questionnaires, professionals showed less satisfac- recommend to use about 10 participants [28] or 10% of tion. Nevertheless, the PAI-CY and PAI-YA were con- the final study size [29]. Increasing the sample size of sideredtoinclude themostrelevanttopics, andmostof the present pilot study would have extended the study the items and response categories were clear to the period, which already took longer than expected. Fur- users. Furthermore, the PAI-CY and PAI-YA seem to be thermore, it would make it even more difficult to find feasible for use in the regular admission procedure of sufficient participants for the field study; this is already Dutch rehabilitation centres. The adaptations made to challenging because of the (overall) small size of this the PAI-CY and PAI-YA after the pilot study are likely population. Moreover, conducting pilot studies with to improve satisfaction with the content, the clar- even a few participants can be very informative in terms ification of questions, and satisfaction with the ques- of assessing feasibility of the procedures, ensuring clarity tionnaires with regard to compiling a rehabilitation of the wording, and acceptability of the formats [30]. plan. Although face and content validity have been op- Clustering of items into domains based on previous timized, a larger field study is taking place to further studies [4, 5] was supported by the present study, which develop the PAI-CY and PAI-YA and assess their Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 11 of 12 properties as a quantitative instrument to reliably assess 4. Rainey L, Elsman EB, van Nispen RM, van Leeuwen LM, van Rens GH. Comprehending the impact of low vision on the lives of children and rehabilitation needs and monitor outcomes of children/ adolescents: a qualitative approach. Qual Life Res. 2016;25:2633–43. young adults with a visual impairment seeking rehabili- 5. Elsman EBM, Van Rens GHMB, Van Nispen RMA. Impact of visual impairment tation services. on the lives of young adults in the Netherlands: a concept-mapping approach. Disabil Rehabil. 2016. doi:10.1080/09638288.2016.1236408. Abbreviations 6. Langelaan M, de Boer MR, van Nispen RM, Wouters B, Moll AC, van Rens ICF: International Classification of Functioning, Disability and Health; GH. Impact of visual impairment on quality of life: a comparison with PAI: Participation and Activity Inventory; PAI-CY: Participation and Activity quality of life in the general population and with other chronic conditions. Inventory – Children and Youth; PAI-YA: Participation and Activity Inventory Ophthalmic Epidemiol. 2007;14:119–26. – Young Adults; WHO: World Health Organization 7. Seland JH, Vingerling JR, Augood CA, Bentham G, Chakravarthy U, deJong PT, Rahu M, Soubrane G, Tomazzoli L, Topouzis F, Fletcher AE. Visual Acknowledgements impairment and quality of life in the older European population, the We greatly thank all participating parents, children, adolescents, young adults EUREYE study. Acta Ophthalmol. 2011;89:608–13. and professionals for their contributions. We gratefully acknowledge Alwine 8. Chavda S, Hodge W, Si F, Diab K. Low-vision rehabilitation methods in van der West for her work on this pilot study during her scientific internship. children: a systematic review. Can J Ophthalmol. 2014;49:e71–3. 9. Cochrane G, Lamoureux E, Keeffe J. Defining the content for a new Funding quality of life questionnaire for students with low vision (the Impact A grant for this study was provided by Royal Dutch Visio. The sponsor had of Vision Impairment on Children: IVI_C). Ophthalmic Epidemiol. 2008; no role in 1) study design; 2) the collection, analysis, and interpretation of 15:114–20. data; 3) the writing of the report; and 4) the decision to submit the paper for 10. Rainey L, van Nispen R, van der Zee C, van Rens G. Measurement properties publication. of questionnaires assessing participation in children and adolescents with a disability: a systematic review. Qual Life Res. 2014;23:2793–808. Availability of data and materials 11. Van Leeuwen LM, Rainey L, Kef S, Van Rens GHMB, Van Nispen RMA. The datasets used and/or analysed during the current study are available Investigating rehabilitation needs of visually impaired young adults from the corresponding author on reasonable request. according to the International Classification of Functioning, Disability and Health. Acta Ophthalmol. 2015;93:642–50. Authors’ contributions 12. Rainey L, van Nispen R, van Rens G. Evaluating rehabilitation goals of EE carried out the data collection, analysed the data and drafted the visually impaired children in multidisciplinary care according to ICF-CY manuscript; RvN participated in the design of the study, carried out part of guidelines. Acta Ophthalmol. 2014;92:689–96. the data collection, and revised and approved the final draft of the 13. Bruijning J, van Nispen R, Verstraten P, van Rens G. A Dutch ICF Version of manuscript, and GvR participated in the design of the study, revised and the Activity Inventory: Results from Focus Groups with Visually Impaired approved the final manuscript. Persons and Experts. Ophthalmic Epidemiol. 2010;17:366–77. 14. Bruijning JE. Implementation and application of the D-AI, Development of Competing interests the Dutch ICF Activity Inventory: investigating and evaluating rehabilitation The authors declare that they have no competing interests. needs of visually impaired adults. 2013. 15. Massof RW, Ahmadian L, Grover LL, Deremeik JT, Goldstein JE, Rainey C, Consent for publication Epstein C, Barnett GD. The activity inventory: An adaptive visual function Not applicable. questionnaire. Optom Vis Sci. 2007;84:763–74. 16. WHO. International Classification of Functioning, Disability and Health. Ethics approval and consent to participate Geneva: World Health Organization; 2001. 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Arthritis Res Ther. 2011;13:R152. Publisher’sNote 20. De Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in Medicine: a Springer Nature remains neutral with regard to jurisdictional claims in practical guide. New York: Cambridge University Press; 2011. published maps and institutional affiliations. 21. WHO. ICD-10: International statistical classification of diseases and related health problems, 10th revision. Geneva: World Health Organization; 1994. Author details 22. Van Rens GHMB, Vreeken HL, Van Nispen RMA. Guideline visual impairment, Department of Ophthalmology, VU University Medical Centre and the rehabilitation and referral [Richtlijn visusstoornissen, revalidatie en Amsterdam Public Health research institute, PO Box 70571007 MB verwijzing]. Nijmegen: Dutch Society of Ophthalmology [Nederlands Amsterdam, The Netherlands. Department of Ophthalmology, Elkerliek Oogheelkundig Gezelschap]; 2011. 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The importance of Changes in causes of low vision between 1988 and 2009 in a Dutch conducting and reporting pilot studies: the example of the Scottish Births population of children. Acta Ophthalmol. 2012;90:277–86. Survey. J Adv Nurs. 2001;34:289–95. 3. Salminen AL, Karhula ME. Young persons with visual impairment: 27. van Teijlingen E, Hundley V. The importance of pilot studies. Nurs Stand. Challenges of participation. Scand J Occup Ther. 2014;21:267–76. 2002;16:33–6. Elsman et al. Health and Quality of Life Outcomes (2017) 15:98 Page 12 of 12 28. Nieswiadomy RM. Foundations of nursing research. 4th ed. New Jersey: Pearson Education; 2002. 29. Lackey NR, Wingate AL. The pilot study: One key to research success. In: Brink PJ, Woods MJ, editors. Advances design in nursing research. 2nd ed. California: Sage; 1998. 30. Hertzog MA. Considerations in determining sample size for pilot studies. Res Nurs Health. 2008;31:180–91. 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