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Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and... Background: Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods: Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. Results: The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach’s alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. Conclusions: The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken. Keywords: Adolescents and young adults, cancer, unmet needs, measure development, psychometric evaluation, reliability, validity * Correspondence: [email protected] Health Behaviour Research Group (HBRG), Priority Research Centre for Health Behaviour (PRCHB), University of Newcastle and the Hunter Medical Research Institute (HMRI), Callaghan, New South Wales, Australia Full list of author information is available at the end of the article © 2012 Clinton-McHarg et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 2 of 11 http://www.hqlo.com/content/10/1/13 -Young People (CNQ-YP), a measure designed to cap- Background ture the perceived needs of AYA cancer patients and Cancer in adolescents and young adults (AYAs) com- survivors. Specifically, the aims were to: 1) establish face prises approximately 0.5-2% of all cancer diagnoses and content validity; and 2) perform exploratory factor [1-4]. While definitions of adolescence and young adult- analysis, assess internal consistency, and examine the hood vary, AYAs are commonly defined as those aged test-retest reliability, discriminative validity, responsive- 15 to 30 years [2,5,6]. Five year survival among AYAs ness and acceptability of the measure. varies depending on the type of cancer diagnosed, how- ever, overall survival rates range between 73% and 83% [1,4,7]. Treatments may be lengthy and have been asso- Methods Establish face and content validity ciated with both short-term side effects, including nau- A number of steps were undertaken to develop the mea- sea (more than 35%)[8] and fatigue (30-93%)[9], and sure upon which psychometric evaluation was con- long-term consequences, such as infertility, secondary ducted. These are described below: primary malignancies and cardiotoxicity [5]. Literature review to identify items, domains and response Adolescence and young adulthood is a critical phase scale of physical, emotional, cognitive and social development Medline, PsycINFO, Embase and CINAHL databases [10,11]. As such, a cancer diagnosis may have profound were searched to identify existing scales developed to effects on the lives of AYAs, interfering with the attain- assess the unmet needs of cancer patients or survivors ment of normal developmental milestones [11-13]. of any age. The following keyword combinations: [neo- Increased dependence on family members at a time plasm or cancer or oncol*] and [perceived need* or when AYAs would normally be developing their own unmet need*] and [questionnaire or survey or measure independence may lead to changes in parent-child or scale] were used in the database search. Publications dynamics and conflict within the family [11]. Interrup- reporting the development or psychometric properties tions to schooling may result in subsequent difficulties of unmet needs measures were retained, and measures with employment or educational achievements [5]. Body were examined to identify items and domains relevant image concerns, difficulty accessing sexual health knowl- to AYA cancer survivors. edge and obstacles to developing close interpersonal The literature review identified 108 items, organised relationships may also serve as barriers for developing into seven domains, which were conceptually relevant to sexual identity in this group [12]. AYAs experiences of cancer. Relevant items were modi- A first step in improving psychosocial outcomes for AYA cancer survivors is to accurately identify and prior- fied to reflect current life events among AYAs such as studying, early employment and supporting young itise their psychosocial needs [14,15]. A recent review of families. Item readability was adapted to reflect the multi-dimensional measures of psychosocial health for appropriate reading level of AYAs. An overall grade 6 AYA cancer survivors found two critical limitations. reading level (confirmed by the Flesch-Kincaid Grade First, although most studies examined face and con- Level in Microsoft Word) was chosen because young struct validity, few examined test-retest reliability or dis- people undergoing treatment for cancer may have criminative validity [16]. Second, there was an absence missed substantial proportions of their schooling of validated unmet needs assessments, with most avail- [11,19]. The response scale for the measure was adapted able measures focussing on quality of life [16]. Measures from the Cancer Needs Questionnaire (CNQ) and Sup- of unmet need are important as they provide direct portive Care Needs Survey (SCNS). This response for- information on consumer preferences that can be used mat has been rated as easy to follow and use by adult to develop optimally relevant and cost-effective services cancer populations [17,20,21]. [17]. Focus group with AYA cancer survivors Despite the lack of psychometrically rigorous unmet Adolescents and young adults with cancer were needs scales available for AYAs with cancer, recent stu- recruited through CanTeen Australia. CanTeen is the dies in the United States have indicated that the number peak support organisation in Australia for AYAs aged of unmet needs reported by this population group may 12-24 years affected by cancer. Six AYAs aged 14-19 be high [18]. As a consequence, there is a need to years participated in the focus group. Using the draft develop a scale to assess the unmet needs of AYAs questionnaire derived from the literature, participants which is relevant to both young people undergoing can- were askedto listissues or needswhich were most cer treatment, as well as to those in the post-treatment importantordifficultforthem andto provideother survivorship phase. The aim of this study was to establish the psycho- comments regarding item content, wording of questions metric properties of the Cancer Needs Questionnaire and ease of completion. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 3 of 11 http://www.hqlo.com/content/10/1/13 Feedback from health professionals’, researchers’ and the they found the response time-frame, “in the past general public month”, did not allow them to express all the concerns Health professionals from a regional hospital in New about unmet needs they had experienced throughout South Wales (NSW) Australia were nominated and their cancer journey, especially during treatment. There- invited by a paediatric oncologist to join a panel to fore, the time-frame of the response scale was modified review the draft needs instrument. Twelve health profes- to “any time since your cancer diagnosis” for five sionals participated in the panel which included one domains (Cancer Treatment Staff, Cancer Treatment paediatric oncologist, two paediatric haematologists, Centre, Education, Work and Information). For the three oncology nurses, one cancer care coordinator, one remaining three domains (Feelings, Relationships and social worker, one psychologist, one oncology pharma- Daily Life), the response time-frame remained “in the cist, one physiotherapist and one occupational therapist. last month”. All health professionals had experience working directly with AYA cancer populations. The panel were asked to Establish psychometric properties provide feedback on the content of the survey and sug- Description of the Cancer Needs Questionnaire - Young gest additional items. People (CNQ-YP) Eight researchers from Australia and Canada with Face and content validity was established using the pro- expertise in the development of unmet needs measures cedures above. The resulting measure had 139 items for cancer populations were asked to provide critical presented in eight domains: 1) Cancer Treatment Staff feedback on the domains, items and response scale of (36 items); 2) Cancer Treatment Centre (11 items); 3) the measure via email. A convenience sample of twelve Education (10 items); 4) Work (10 items); 5) Informa- individuals from the general population, who were tion (9 items); 6) Feelings (35 items); 7) Relationships known to the research team and were not from a medi- (18 items); and 8) Daily Life (10 items). Items were cal or research background, were also asked to provide ratedusing afive-pointresponsescalefrom “No Need” feedback on the questionnaire in terms of its language to “Very High Need”. and clarity. This sample included adult professionals, Items in the Education, Work and Relationships such as school teachers and engineers, as well as parents domain were only answered if they were relevant to the and AYAs who had not experienced cancer. AYA’s situation. Two screening questions determined Revision of measure whether the young person was currently studying, two Feedback and advice received from all participants led to screening questions determined whether the young per- a revised response scale and stem for the measure, and son was currently employed, and one screening question one extra domain (total of eight domains). The initial determined if the AYA had a “spouse/partner or boy- number of items was also modified. Four items were friend/girlfriend” or “sibling/s or step-brothers/sisters”. removed, and 31 items added taking the total number of Participants items from 108 to 139. Adolescents and young adults were eligible to partici- Pilot testing pate in the main trial if they: 1) had received treatment The measure was pilot tested with AYAs recruited from for cancer at one of seven identified treatment centres a population-based cancer registry in Australia. Adoles- in Australia; 2) had been diagnosed with an invasive cents and young adults who participated in the pilot cancer in the last five years (between 1 January 2004 were: 1) aged 14 to 19 years at diagnosis; and 2) had and 31 December 2009); 3) were aged 14 to 25 years been diagnosed with cancer in the last five years inclusive at the time of diagnosis (e.g. currently up to 30 (between January 1 2002 and December 31 2007). The years of age); and 4) had not participated in the pilot upper age limit of 19 years at diagnosis was selected, as study. Participants were also confirmed by their treating the World Health Organisation (WHO) defines adoles- clinician as: 5) having a lifeexpectancyofatleast 12 cents as being between 10-19 years of age [22]. The months; 6) being physically and mentally able to com- lower limit was chosen because, in Australia, AYAs aged plete a survey; and 7) being sufficiently literate in Eng- 14 years and older have the legal right to make their lish to complete the measure. own decisions about the type of health care they receive Procedure [23]. The eligibility criteria of 5 years since diagnosis Relevant institutional ethics approvals were obtained for ensuredthatthe sample comprisedofyoung people up the study. Recruitment commenced in August 2009 and to the age of 24 years. Details of the pilot study are pre- data collection was completed in May 2010. Adolescents sented elsewhere [24]. and young adults who met the eligibility criteria were Of the 32 AYAs who participated in the pilot test, identified from medical records at each treatment cen- 53% were female and 90% had completed treatment. A tre. The principal clinician at each treatment centre quarter of participants (25%, n = 8) commented that mailed a study information pack to eligible AYAs and Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 4 of 11 http://www.hqlo.com/content/10/1/13 sought permission to release their contact details to the Test-retest reliability research team. Those who agreed were mailed a survey AweightedCohen’s kappa coefficient (), was used to packet containing a reply paid envelope, a copy of the measure the level of agreement between responses at baseline (time 1) and retest (time 2). Items which had a CNQ-YP, and questions about demographic characteris- weighted kappa of > 0.60 were considered to have excel- tics including: marital status; language preferences; living lent test-retest reliability and were retained. To ensure arrangements; education; preferences regarding the sur- items related to high unmet needs were not dismissed, vey format and locations for survey completion; and items which did not obtain a weighted kappa of > 0.60 feedback of results to health professionals, treatment but for which > 20% of participants indicated having a centres, researchers and other organisations. Reminder letters were sent to non-responders at two weeks and a high or very high need, were also kept. reminder phone call was made at four weeks following Discriminative validity the initial mailout. In order to compare different groups of participants, Return of the completed measure was taken as a parti- factor scores were calculated by summing all raw scores cipant’s consent for their data to be included in the for items within the factor and dividing by the number study. In order to evaluate the test-retest reliability of of non-missing items. As all items in the measure were the measure, all participants who agreed to be contacted worded and scored in the same positive direction, no again were sent copies of the CNQ-YP one week follow- reversing of response scores for items was required. ing receipt of their initial survey and asked to complete Observations with missing values for > 50% of items the measure a second time. The one-week time-frame within a factor were excluded from the analysis. was chosen to minimise the chance that patients had Based on previous research [27-30], it was hypothe- substantial changes in their unmet needs or could recall sised that young people receiving treatment would have their previous responses [25]. a higher median factor score for all factors, compared Statistical analysis with young people who had finished treatment. A non- The demographic characteristics of AYAs were reported parametric Wilcoxon rank-sum test was computed to using descriptive statistics (frequencies, proportions, determine if any significant differences between the fac- tor scores of these two groups existed. means, medians and 95% confidence intervals). Differ- Responsiveness ences in the characteristics of consenters and non-con- Responsiveness was gauged using floor and ceiling senters were examined using the Chi-square statistic. effects. Factors where less than 5% of participants scored the lowest possible score or the highest possible score Psychometric evaluation were considered acceptable. Factor analysis Items which had greater than 90% of respondents indi- Acceptability cating the same level of need and items answered by ≤ Acceptability of the measure was assessed using the fol- 10% of respondents were excluded from the measure. lowing four questions: 1) “I found the instructions easy Observations with a missing value for any of the to follow"; 2) “I found the questions clear"; 3) “Ifound included items were excluded from the factor analysis the answer choices easy to understand"; and 4) “Ifound using list-wise deletion. Exploratory factor analysis using the questions distressing”. Items were scored on a five the principal components method (PCA) and Eigenvalue point Likert scale from “Strongly Disagree” to “Strongly > 1 rule was performed. Factors were orthogonally Agree”. The acceptability of the measure was reported rotated using the varimax procedure and factors which using frequencies, proportions, and 95% confidence accounted for greater than 5% of the variance were con- intervals. sidered important. Items which had a factor loading of > 0.40 on only one factor, or where > 20% of partici- Results pants indicated having a high or very high need for the Participants, response rates and consent bias item, were kept [26]. Spearman’s rank correlation coeffi- Five hundred and seventy-seven eligible AYAs were cient was then used to identify items which were highly identified by their clinicians’ at the treatment centres, correlated with each other (correlations > 0.90) and had and 280 of these (49%) consented to be contacted by the research team. Of the 280 young people contacted, < 20% of participants indicating a high or very high 139 (50%) returned a questionnaire. Of the 139 partici- need, which could be further excluded from the factors. pants who completed the measure at baseline (time 1), Internal consistency 101 (73%) consented to be contacted a second time and Items which had an item-total correlation with the total were sent a retest survey, with 34 (34%) completing the scale of < 0.20 were discarded from the measure. For measure at time 2. The time between being sent and each factor, a Cronbach’s coefficient alpha (a) value of > returning the retest measure ranged between 9 and 64 0.70 and < 0.95 was considered acceptable. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 5 of 11 http://www.hqlo.com/content/10/1/13 Table 1 Demographic characteristics of consenters and Work domains were independently added to the factor non-consenters for the baseline study analysis, two additional factors were identified and 10 Demographic Non- Consenters Test statistic items were removed, taking the total number of factors Characteristic consenters (n = 139) to five. Five additional items from the Relationships sub- (n = 438) domains (Partners and Siblings) had significant loadings n (%) n (%) c df p > 0.40 on a single factor and all were added to Factor 2. Female 188 (43) 89 (64) 18.8 1 < An item-item Spearman correlation matrix for each of 0.01 the five factors and 108 items revealed that two items Non-haematological 243 (56) 73 (53) 0.31 1 0.58 from Factor 2 had correlations > 0.90. However, these ≥ 2 years post-diagnosis 293 (68) 99 (71) 0.56 1 0.45 items appeared to capture different aspects of the Median Median z p patient/staff relationship; therefore, neither item was (Q1-Q3) (Q1-Q3) removed from the measure. Age at diagnosis 22 (19-24) 21 (18-23) 2.24 0.03 Internal consistency Item-total correlations for items within all five factors days, with a median of 24 days (Q1 = 16 days, Q3 = 30 were > 0.20 and ranged from 0.33 to 0.88. All factors days). had Cronbach’s alphas of > 0.70, indicating good inter- The demographic characteristics of AYAs who con- nal consistency. sented to participate in the baseline study, and those Test-retest reliability AYAs who did not consent, can be seen in Table 1. Although traditionally performed prior to factor analysis, Consenters were significantly younger than non-consen- test-retest reliability was performed after factor analysis ters, and females were over-represented in the consent- in the present study due to the small sample size (n = ing sample. There were no significant differences 34). This allowed the number of items included in the between the demographic characteristics of AYAs who test-retest analysis to be reduced, thereby limiting the completed both the baseline and retest surveys, com- likelihood of type 1 error. Weighted kappa values pared to AYAs who completed the baseline survey only. between responses at time 1 and time 2 ranged from 0.09 to 0.94. Twenty-four items had a weighted kappa of Psychometric evaluation < 0.60 and < 20% of participants indicating a high or Factor analysis very high need, and were therefore excluded from the No items had > 90% of participants reporting the same measure leaving 84 items. level of need, indicating reasonable variability of Revised factor analysis and internal consistency responses within items. Only two items in the measure Following test-retest reliability analysis, factor analysis had missing values greater than 10% (items 126 and 128 was repeated to confirm the factor structure of the mea- from the Relationships domain). These two items were sure. One hundred and sixteen observations had no removed from the measure, leaving 137 items prior to missing values for any items and were included in the conducting factor analysis. analysis. The number of important factors increased Of the 139 participants who completed the measure, from five to six. The four main factors explained 63% of 111 observations had no missing values for any items the variance. Fourteen items did not have unique factor and were included in the analysis. Due to the screening loadings > 0.40 and were removed from the measure, questions, only a subset of AYAs completed the leaving 70 items. All but six items loaded on the same domains related to Education and Work, meaning there factor as in the previous factor analysis, with five of were different numbers of observations relating to dif- these loading on the new factor. The items and factor ferent participants. Therefore, the initial factor analysis loadings corresponding to these six factors are presented was undertaken without these two domains. Following in Table 2. the initial factor analysis, the Work and Education Internal consistency of the measure was re-calculated domains were added to the analysis, one at a time. on the shortened measure. Item-total correlations of the Initial factor analysis of the six main domains (112 of 70 items for all six factors were still > 0.20 and ranged 137 items) revealed 18 factors with Eigenvalues > 1. from 0.32 to 0.90. All factors maintained alphas > 0.70 When the factors were orthogonally rotated, three fac- (Table 3). tors accounted for greater than 5% of the variance. A Discriminative validity three-factor forced analysis and rotation confirmed that Of the 139 AYAs who completed the measure, six parti- the three-factor structure was the simplest and clearest. cipants were unsure of their treatment status and were Ninety-five items fell into these three factors and excluded from the known-groups comparison. Partici- accounted for 58% of the total variance, 17 items were pants receiving treatment had higher median factor removed. When the 20 items from the Education and scores than those who had finished treatment for all Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 6 of 11 http://www.hqlo.com/content/10/1/13 Table 2 Factor structure of the CNQ-YP from the revised factor analysis Item number Description of item Factor loading Factor Factor Factor Factor Factor Factor 1 2 3 4 5 6 Factor 1 - Treatment Environment and Care (n = 116) Cancer treatment staff telling 1 about my diagnosis 0.76 me: 2 what might happen during treatment 0.77 4 whether I had the option to decline treatment 0.54 5 about the short-term side-effects of treatment 0.73 6 about the long-term side-effects of treatment 0.65 7 my chances of a full recovery 0.78 8 what would happen when treatment finished 0.71 9 whether I would be able to have children 0.60 12 whether my treatment was working 0.87 13 my test results as soon as possible 0.87 14 the way I felt was normal 0.80 15 how to manage my medication 0.82 16 what I could do to stay healthy 0.67 17 what to do if I noticed a particular side-effect 0.74 Having cancer treatment staff 20 listened to my concerns 0.89 who: 21 treated me as an individual 0.87 22 were respectful 0.93 23 were approachable 0.91 24 were friendly 0.91 25 could have a laugh with me 0.90 26 explained what they were doing 0.89 27 spoke to me in a way that I could understand 0.90 28 let me talk about my feelings 0.77 29 let me ask questions 0.90 30 let me make decisions about my treatment 0.74 31 talked to me in private, without my family 0.66 Being able to have: 39 time to myself 0.55 41 privacy 0.51 42 pleasant surroundings 0.52 43 good food 0.45 46 a choice of cancer specialists 0.64 47 the same cancer staff throughout treatment 0.63 48 a choice of times for appointments 0.64 Factor 2 - Daily Life (n = 116) Being able to: 110 make plans or think about the future 0.51 Coping with: 102 changes in my physical ability 0.68 103 changes in my appearance 0.69 107 not being able to do the same things as other people 0.75 my age 117 my parent/s being over-protective 0.49 Managing: 134 pain 0.65 135 medication 0.48 136 physical side-effects of treatment 0.76 137 feeling tired 0.72 138 loss of mobility 0.65 142 to take part in social activities 0.71 143 to travel to social events 0.67 Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 7 of 11 http://www.hqlo.com/content/10/1/13 Table 2 Factor structure of the CNQ-YP from the revised factor analysis (Continued) Factor 3 - Feelings and Relationships (n = 116) Feeling: 84 frustrated 0.56 86 anxious or nervous 0.73 Worrying about: 91 my cancer spreading 0.76 92 my cancer returning 0.66 93 whether my cancer treatment has worked 0.68 95 having cancer treatment 0.70 97 how my family is coping 0.68 Finding: 98 inner strength 0.66 Being able to: 112 accept my diagnosis 0.60 113 be independent 0.51 Coping with: 125 changes in my relationship with my partner 0.53* 131 changes in my relationships with my sibling/s 0.59* Knowing how to: 132 ask my sibling/s for support 0.51* 133 give support to my sibling/s 0.52* Factor 4 - Information and Activities (n = 116) Being able to: 37 spend time with people my own age 0.44 38 talk to people my age who had been through a similar 0.69 experience Being able to have: 44 leisure spaces and activities 0.45 Finding information that: 75 was specifically designed for me 0.61 81 described relaxation techniques 0.54 Factor 5 - Education (n = 65) Being able to: 56 attend classes 0.69 58 get extensions or special consideration 0.74 59 get guidance about study options or future career 0.56 paths Factor 6 - Work (n = 90) Knowing: 71 how much work I would miss 0.67 72 how to ask managers/co-workers for support 0.78 74 that managers/co-workers had support to help them 0.76 cope % of Total Variance 31% 13% 11% 8% n/a n/a *AYAs only completed these items if relevant to their situation. Item 125 was completed by n = 54 participants, Items 131, 132 and 133 were completed by n = 96 participants. These items do not form part of the total variance explained. factors except Factors 5 and 6 ("Education and Work”), CI 48-64%) agreed that the answer choices were easy to however these differences were not statistically signifi- understand. Seventy-eight percent (n = 108, CI 71-84%) cant (see Table 4). of AYAs disagreed that the questions were distressing. Potential responsiveness The proportion of participants who scored the mini- Discussion mum and maximum scores for each factor can be seen This research attempted to establish the face and con- in Table 5. The proportion of participants ranged from tent validity, factor structure, internal consistency, test- 0% to 5.1% for the maximum score to 8.3% to 43% for retest reliability, discriminative validity, potential respon- the minimum score, with large proportions of partici- siveness and acceptability of the CNQ-YP using rigorous pants having floor effects in the “Education” and psychometric criteria. Factor analysis and the assessment “Work” factors (42% and 43% respectively). of test-retest reliability resulted in a final measure with Acceptability six factors and 70 items (75 items including the five When asked about the acceptability of the measure, 80% screening items): 1) Treatment Environment and Care of participants agreed that the instructions were easy to (33 items); 2) Daily Life (12 items); 3) Feelings and Rela- follow (n = 111, CI 72-86%), 73% agreed that the ques- tionships (15 items including 1 screening item); 4) Infor- tions were clear (n = 102, CI 65-80%) and 56% (n = 78, mation and Activities (5 items); 5) Education (5 items Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 8 of 11 http://www.hqlo.com/content/10/1/13 Table 3 Cronbach’s alpha for each Factor of the CNQ-YP cancer survivors [34], indicating that participants in psy- chosocial cancer research may be self-selected and are Description of factor Number of Cronbach’s items alpha only representative of a sub-population of survivors who Factor 1 - Treatment Environment/ 33 0.98 wish to talk about their experiences. Care The small sample size has implications for the statisti- Factor 2 - Daily Life 12 0.94 cal analyses undertaken, particularly the exploratory fac- Factor 3 - Feelings/Relationships 14 0.92 tor analysis. When performing factor analysis it is Factor 4 - Information/Activities 5 0.83 recommended that the number of participants in the Factor 5 - Education 3 0.82 sample be at least five times the number of items in the Factor 6 - Work 3 0.89 measure [35]. As there were 139 items in the original Total Scale 70 0.98 measure, only a 1:1 item-to-participant ratio was actu- ally achieved. This may have meant that some important items reported as high or very high unmet needs by including 2 screening items); and 6) Work (5 items smaller sub-samples of participants did not achieve high including 2 screening items). correlations with other items or factors in the measure There are a number of limitations related to the study [36]. However, as the inclusion criteria allowed items sample and methodology which should be considered which had greater than 20% of participants reporting a when interpreting these results. high or very high level of need to be retained, it is unli- kely that items considered important by sub-samples of Limitations AYAs were excluded. The primary limitation of the research was the size of The sample for the test-retest analysis was also small the sample achieved. Only 139 AYAs recruited through and the median time to return the retest measure was the seven treatment centres completed and returned the greater than the recommended 2-14 days [37]. Conse- measure (an overall response rate of 50%). Other studies quently, responses to the retest measure may have describing the development of measures for AYA cancer reflected a change in participants’ needs [37]. Despite patients have reported response rates of around 90% the longer than recommended retest period, the major- [28,30,31]. However, the age range of these samples (8- ity of items had acceptable kappa values (> 0.60), and as 20 years) was lower than in the current study (16-30 the time-frame for the response scale was either “any years). One study describing the development of a mea- time since your cancer diagnosis” or “in the last month”, sure for a similar age group (16-28 years) only achieved it is unlikely that the longer period of retest would have a response rate of 53% [32]. Reasons for lower response greatly affected the overall responses obtained. The rates with older AYA samples, compared with younger inclusion criteria also allowed items which had a low samples, are speculative. AYAs in this age group are weighted kappa value but a large proportion of partici- highly mobile [7,33]. Therefore, it is possible that a large pants(>20%)reporting ahighorveryhighlevel of proportion of AYAs may not have received the ques- need to remain in the measure, further ensuring that tionnaire because of incorrect contact details. It is also important items were not excluded. possible that some young people were not interested in Although small, the overall sample included partici- participating in this type of research or perceived that pants from five states and both large- and small-volume the research was not relevant to their current circum- treatment centres for AYA cancer patients. Therefore, it stances. Low participation may be especially applicable is likely that a wide range of young people were to psychosocial research studies where personal issues involved. Those who consented to take part in the study such as feelings and emotions related to cancer are dis- were slightly younger and more likely to be female than cussed. Similar results have been found with adult breast Table 4 Comparison of factor scores between AYAs receiving treatment and AYAs finished treatment Factor Receiving Treatment Finished Treatment Wilcoxon rank sum n median Q1 Q3 n median Q1 Q3 zp 1 - Treatment Environment/Care 17 1.8 1.1 2.1 116 1.5 1.2 2.2 0.32 0.75 2 - Daily Life 17 2.3 1.1 3.2 115 1.4 1.0 2.2 1.46 0.14 3 - Feelings/Relationships 17 2.4 1.6 2.6 115 1.5 1.2 2.3 1.81 0.07 4 - Information/Activities 17 3.6 1.6 3.8 116 2.2 1.5 2.8 1.58 0.11 5 - Education 11 1.3 1.0 2.0 67 1.7 1.0 2.7 -0.92 0.36 6 - Work 13 1.3 1.0 3.0 94 1.3 1.0 2.0 0.53 0.60 Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 9 of 11 http://www.hqlo.com/content/10/1/13 Table 5 Floor and ceiling effects per factor Factor Lowest possible score Highest possible score n n (%) n (%) Factor 1 - Treatment Environment/Care 133 11 (8.3) 1 (0.8) Factor 2 - Daily Life 132 36 (27) 0 (0.0) Factor 3 - Feelings/Relationships 132 19 (14) 0 (0.0) Factor 4 - Information/Activities 133 16 (12) 6 (4.5) Factor 5 - Education 78 33 (42) 4 (5.1) Factor 6 - Work 107 46 (43) 4 (3.7) those who did not consent. However, participation by have at least some domains with alphas > 0.70, no scales AYAs with a range of cancer types, at different stages achieved alphas greater than 0.70 for all domains [16]. since their cancer diagnoses, increases the probability In the case of the Perceived Illness Experience Scale that the items identified as important in the measure (PIE), only two out of nine domains had alpha values > represent the views of the larger AYA cancer 0.70, showing variability in the internal consistency of population. these measures [16]. Finally it should be noted that, apart from infertility, A further strength of this study is that it assessed test- issues surrounding other aspects of sexual health and retest reliability, unlike many other studies reporting the development of measures for cancer patients and survi- intimacy were not raised in focus group discussions or vors [16,39]. All but four items in the measure had in the pilot study. Such items were therefore not incor- porated into the measure. The absence of these items weighted kappa values > 0.60, and these four items all may reflect the young age of participants in the pilot had weighted kappas > 0.49. In comparison, a recent study compared to participants in the main trial. It is review found that test-retest reliability was reported for recommended that issues surrounding sexual health are only one instrument measuring quality of life in AYA further investigated in future scale development. cancer survivors [16]. However, for this measure ICCs were only reported at the domain level rather than the Psychometric strengths of the CNQ-YP item level. This can be misleading as, although total Despite the difficulties with recruitment, the current agreement levels for the domain may be high, agreement study had a number of strengths related to the psycho- for individual items may vary [40]. metric development of the CNQ-YP and the measure compared favourably with recognised psychometric cri- Recommended improvements for the CNQ-YP teria. Reliability and validity of the CNQ-YP was exam- In the current study, the CNQ-YP was unable to distin- ined using appropriate psychometric methods. The final guish between AYAs currently receiving treatment and factor structure of the CNQ-YP showed that the four those who had completed treatment. For Factors 1, 4, 5 main factors accounted for 63% of the variance. This and 6 (Treatment Environment and Care, Information was considered acceptable, as the average variance and Activities, Education, and Work) this may have accounted for by exploratory factor analysis is around been because the response time-frame was “any time 60% [36]. This outcome also compares well with other since diagnosis”. Therefore, patients who had completed quality of life measures developed for AYA cancer survi- treatment may have been reflecting a need level they vors, such as the Adolescent Quality of Life Instrument had while receiving treatment. The small sample size in (AQoL) which reported having six factors representing the receiving treatment group (n = 17) may have also 67% of the variance [31], and the Quality of Life - Can- limited the power for hypothesis testing. There was a cer Survivors (QOL-CS) instrument which also has six non-significant trend toward AYAs receiving treatment factors accounting for 56% of the variance [32]. reporting higher needs related to Feelings and Relation- In addition, the CNQ-YP achieved high Cronbach’s ships. This could be further explored with a larger alphas, with all six factors reporting alphas greater than sample. 0.80.Itispossiblethatsomealpha valuesmayhave The CNQ-YP did not appear to have a ceiling effect been artificially high due to the large number of items (< 5.1% of participants scored the highest possible score in the factors [25,38]. However, no items had correla- in each domain). However, there was a large floor effect tions < 0.20, and alphas > 0.80 were also reached in Fac- for all domains. This may have implications for inter- tors 5and 6(WorkandEducation),bothofwhichhad vention studies where researchers wish to measure a only three items. Although most of the available quality reduction in needs, as a large proportion of participants of life measures developed for AYA cancer survivors (between 8.3% and 43%) are already scoring the Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 10 of 11 http://www.hqlo.com/content/10/1/13 Authors’ contributions minimum possible scores for each factor. However, fac- TCM, MC, RSF and AS were responsible for the initial study design. All tors with the largest floor effects (Education 42% and authors developed and refined the measure. TCM and MC coordinated Work 43%) were only completed by a sub-group of par- recruitment and data collection. TCM, MC and CD conducted psychometric analysis. All authors contributed to drafting, revising and approving the final ticipants. Therefore, a larger sample of AYAs may pro- manuscript. duce different results. These floor effects may also indicate that the majority of young people do not Competing interests The authors declare that they have no competing interests. experience high levels of need in these areas. However, the Education factor also had the highest ceiling effect Received: 31 August 2011 Accepted: 30 January 2012 (5.1%), suggesting that this is probably not the case. Published: 30 January 2012 Testing of convergent and divergent validity, respon- References siveness and predictive validity was beyond the scope of 1. Birch JM, Pang D, Alston RD, Rowan S, Geraci M, Moran A, Eden TOB: the present study. It is recommended that future psy- Survival from cancer in teenagers and young adults in England, 1979- chometric testing of the measure be undertaken to 2003. Br J Cancer 2008, 99(5):830-835. 2. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 explore these issues further. The small sample size Years of Age, Including SEER Incidence and Survival: 1975-2000. Edited means that the factor structure achieved in the current by: Bleyer A, O’Leary M, Barr R, Ries L. Bethesda, MD: National Cancer study may not be reproducible. Therefore, it is also Institute, NIH; 2006:. 3. Bleyer A: Young adult oncology: the patients and their survival recommended that confirmatory factor analysis with a challenges. CA Cancer J Clin 2007, 57(4):242-255. larger sample of AYA cancer survivors be conducted 4. Desandes E: Survival from adolescent cancer. Cancer Treat Rev 2007, prior to using the measure in clinical practice [36,41]. 33(7):609-615. 5. Soliman H, Agresta SV: Current issues in adolescent and young adult cancer survivorship. Cancer Control 2008, 15(1):55-62. Conclusions 6. Thomas DM, Seymour JF, O’Brien T, Sawyer SM, Ashley DM: Adolescent The CNQ-YP is the first multi-dimensional measure of and young adult cancer: a revolution in evolution? Intern Med J 2006, 36(5):302-307. unmet need which has been developed specifically for 7. Australian Institute of Health and Welfare: Young Australians: their health AYA cancer patients and survivors. The measure dis- and wellbeing 2007. Canberra: AIHW; 2007. plays a strong factor structure, and good internal consis- 8. Grunberg SM, Deuson RR, Mavros P, Geling O, Hansen M, Cruciani G, Daniele B, De Pouvourville G, Rubenstein EB, Daugaard G: Incidence of tency and test-retest reliability. Future studies with a chemotherapy-induced nausea and emesis after modern antiemetics. larger sample size are recommended to determine the Cancer 2004, 100(10):2261-2668. discriminate validity and floor and ceiling effects of the 9. Lawrence DP, Kupelnick B, Miller K, Devine D, Lau J: Evidence Report on the Occurrence, Assessment, and Treatment of Fatigue in Cancer measure. Longitudinal studies to establish responsive- Patients. JNCI Monographs 2004, 2004(32):40-50. ness and predictive validity should also be undertaken. 10. Piaget J: Intellectual evolution from adolescence to adulthood. Human Develop 1972, 15:1-12. 11. Abrams AN, Hazen EP, Penson RT: Psychosocial issues in adolescents with Acknowledgements cancer. Cancer Treat Rev 2007, 33(7):622-630. The authors gratefully acknowledge the assistance of: Prof Afaf Girgis; Dr 12. Evan EE, Kaufman M, Cook AB, Zeltzer LK: Sexual health and self-esteem Pandora Patterson and CanTeen Australia; Dr Frank Alvaro and members of in adolescents and young adults with cancer. Cancer 2006, 107(7 the Paediatric Oncology Unit at John Hunter Hospital; Dr Paul Jelfs and staff Suppl):1672-1679. at the New South Wales Central Cancer Registry; and Dr Andrew Wei, A/Prof 13. Whyte F, Smith L: A literature review of adolescence and cancer. Eur J Ian Kerridge, Dr Julian Cooney, Ms Kate Thompson, Dr Michael Osborn, A/ Cancer Care (Engl) 1997, 6(2):137-146. Prof Paula Marlton, Dr William Stevenson, Ms Angela Bayley, Mr Gavin Dyson, 14. McGoldrick D, Neal C, Whiteson M: Advocacy and adolescent/young adult Ms Gillian Myles, Ms Megan Margaria and Ms Molly Forbes who assisted cancer survivors. Pediatr Blood Cancer 2008, 50(5 Suppl):1109-1111. with treatment centre recruitment. The contribution of all AYAs who 15. Reaman GH, Haase GH: Quality of life research in childhood cancer: The participated in the study is also greatly appreciated. Funding for the study time is now. Cancer 1996, 78(6):1330-1332. was provided by the National Health and Medical Research Council of 16. Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K: Australia (NHMRC grant number 300749). Infrastructure support was Measuring the psychosocial health of adolescent and young adult (AYA) provided by the University of Newcastle and Hunter Medical Research cancer survivors: a critical review. Health Qual Life Outcomes 2010, 8(1):25. Institute (HMRI). Dr Tara Clinton-McHarg is supported by a Leukaemia 17. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A: Supportive Foundation Post-doctoral Research Fellowship and Dr Mariko Carey is Care Review Group: Evaluation of an instrument to assess the needs of supported by a Hunter Medical Research Institute Post-Doctoral Research patients with cancer. Cancer 2000, 88(1):217-225. Fellowship. 18. Zebrack B: Information and service needs for young adult cancer survivors. Support Care Cancer 2009, 17(4):349-357. Author details 19. Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, Health Behaviour Research Group (HBRG), Priority Research Centre for Tersak JM, Ness KK: Social outcomes in the Childhood Cancer Survivor Health Behaviour (PRCHB), University of Newcastle and the Hunter Medical Study cohort. J Clin Oncol 2009, 27(14):2390-2395. Research Institute (HMRI), Callaghan, New South Wales, Australia. Centre for 20. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P: The unmet Clinical Epidemiology and Biostatistics (CCEB), Priority Research Centre for supportive care needs of patients with cancer. Supportive Care Review Health Behaviour (PRCHB), University of Newcastle and the Hunter Medical Group. Cancer 2000, 88(1):225-236. Research Institute (HMRI), Callaghan, New South Wales, Australia. National 21. Foot G, Sanson-Fisher R: Measuring the unmet needs of people living Drug and Alcohol Research Centre (NDARC), University of New South Wales, with cancer. Cancer Forum 1995, 19(2):131-135. Sydney, New South Wales, Australia. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 11 of 11 http://www.hqlo.com/content/10/1/13 22. Boyle P, Levin B: World Cancer Report 2008. Lyon: International Agency for Research on Cancer; 2008. 23. Minors (Property and Contracts) Act 1970 - Section 49. . 24. Clinton-McHarg T, Carey M, Sanson-Fisher R, Tracey E: Recruitment of representative samples for low incidence cancer populations: do registries deliver? BMC Med Res Methodol 11(1):5. 25. Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J, Bouter LM, de Vet HCW: Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007, 60(1):34-42. 26. Hatcher L: A Step-by-step Approach to Using the SAS System for Factor Analysis and Structural Equation Modeling. Cary, NC: SAS Institute Inc; 27. Bhatia S, Jenney ME, Bogue MK, Rockwood TH, Feusner JH, Friedman DL, Robison LL, Kane RL: The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. J Clin Oncol 2002, 20(24):4692-4698. 28. Seid M, Varni JW, Rode CA, Katz ER: The Pediatric Cancer Quality of Life Inventory: a modular approach to measuring health-related quality of life in children with cancer. International Journal of Cancer - Supplement 1999, 12:71-76. 29. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002, 94(7):2090-2106. 30. Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM: The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med 1998, 21(2):179-204. 31. Ward-Smith P, Hamlin J, Bartholomew J, Stegenga K: Quality of life among adolescents with cancer. J Pediatr Oncol Nurs 2007, 24(3):166-171. 32. Zebrack BJ, Chesler MA: A psychometric analysis of the Quality of Life- Cancer Survivors (QOL-CS) in survivors of childhood cancer. Qual Life Res 2001, 10(4):319-329. 33. Australian Social Trends 2003. Canberra: Australian Bureau of Statistics; 34. Servaes P, Verhagen S, Bleijenberg G: Determinants of chronic fatigue in disease-free breast cancer patients: a cross-sectional study. Ann Oncol 2002, 13(4):589-598. 35. McDowell I: Measuring Health: A Guide to Rating Scales and Questionnaires. New York: Oxford University Press; 2006. 36. Costello A, Osborne J: Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Practical Assessment, Research & Evaluation 2005, 10(7):1-9. 37. Marx RG, Menezes A, Horovitz L, Jones EC, Warren RF: A comparison of two time intervals for test-retest reliability of health status instruments. J Clin Epidemiol 2003, 56(8):730-735. 38. Streiner D, Norman G: Health Measurement Scales: A Practical Guide to their Development and Use. New York: Oxford University Press;, Fourth 39. Pearce NJM, Sanson-Fisher R, Campbell HS: Measuring quality of life in cancer survivors: a methodological review of existing scales. Psychooncology 2008, 17(7):629-640. 40. Viswanathan M: Measurement Error and Research Design. CA: Sage Publications; 2005. 41. de Vet HCW, Adèr HJ, Terwee CB, Pouwer F: Are factor analytical techniques used appropriately in the validation of health status questionnaires? A systematic review on the quality of factor analysis of the SF-36. Qual Life Res 2005, 14(5):1203-1218. Submit your next manuscript to BioMed Central and take full advantage of: doi:10.1186/1477-7525-10-13 Cite this article as: Clinton-McHarg et al.: Preliminary development and • Convenient online submission psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young • Thorough peer review People (CNQ-YP). 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Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

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Springer Journals
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Copyright © 2012 by Clinton-McHarg et al; licensee BioMed Central Ltd.
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Medicine & Public Health; Quality of Life Research; Quality of Life Research
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Abstract

Background: Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods: Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. Results: The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach’s alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. Conclusions: The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken. Keywords: Adolescents and young adults, cancer, unmet needs, measure development, psychometric evaluation, reliability, validity * Correspondence: [email protected] Health Behaviour Research Group (HBRG), Priority Research Centre for Health Behaviour (PRCHB), University of Newcastle and the Hunter Medical Research Institute (HMRI), Callaghan, New South Wales, Australia Full list of author information is available at the end of the article © 2012 Clinton-McHarg et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 2 of 11 http://www.hqlo.com/content/10/1/13 -Young People (CNQ-YP), a measure designed to cap- Background ture the perceived needs of AYA cancer patients and Cancer in adolescents and young adults (AYAs) com- survivors. Specifically, the aims were to: 1) establish face prises approximately 0.5-2% of all cancer diagnoses and content validity; and 2) perform exploratory factor [1-4]. While definitions of adolescence and young adult- analysis, assess internal consistency, and examine the hood vary, AYAs are commonly defined as those aged test-retest reliability, discriminative validity, responsive- 15 to 30 years [2,5,6]. Five year survival among AYAs ness and acceptability of the measure. varies depending on the type of cancer diagnosed, how- ever, overall survival rates range between 73% and 83% [1,4,7]. Treatments may be lengthy and have been asso- Methods Establish face and content validity ciated with both short-term side effects, including nau- A number of steps were undertaken to develop the mea- sea (more than 35%)[8] and fatigue (30-93%)[9], and sure upon which psychometric evaluation was con- long-term consequences, such as infertility, secondary ducted. These are described below: primary malignancies and cardiotoxicity [5]. Literature review to identify items, domains and response Adolescence and young adulthood is a critical phase scale of physical, emotional, cognitive and social development Medline, PsycINFO, Embase and CINAHL databases [10,11]. As such, a cancer diagnosis may have profound were searched to identify existing scales developed to effects on the lives of AYAs, interfering with the attain- assess the unmet needs of cancer patients or survivors ment of normal developmental milestones [11-13]. of any age. The following keyword combinations: [neo- Increased dependence on family members at a time plasm or cancer or oncol*] and [perceived need* or when AYAs would normally be developing their own unmet need*] and [questionnaire or survey or measure independence may lead to changes in parent-child or scale] were used in the database search. Publications dynamics and conflict within the family [11]. Interrup- reporting the development or psychometric properties tions to schooling may result in subsequent difficulties of unmet needs measures were retained, and measures with employment or educational achievements [5]. Body were examined to identify items and domains relevant image concerns, difficulty accessing sexual health knowl- to AYA cancer survivors. edge and obstacles to developing close interpersonal The literature review identified 108 items, organised relationships may also serve as barriers for developing into seven domains, which were conceptually relevant to sexual identity in this group [12]. AYAs experiences of cancer. Relevant items were modi- A first step in improving psychosocial outcomes for AYA cancer survivors is to accurately identify and prior- fied to reflect current life events among AYAs such as studying, early employment and supporting young itise their psychosocial needs [14,15]. A recent review of families. Item readability was adapted to reflect the multi-dimensional measures of psychosocial health for appropriate reading level of AYAs. An overall grade 6 AYA cancer survivors found two critical limitations. reading level (confirmed by the Flesch-Kincaid Grade First, although most studies examined face and con- Level in Microsoft Word) was chosen because young struct validity, few examined test-retest reliability or dis- people undergoing treatment for cancer may have criminative validity [16]. Second, there was an absence missed substantial proportions of their schooling of validated unmet needs assessments, with most avail- [11,19]. The response scale for the measure was adapted able measures focussing on quality of life [16]. Measures from the Cancer Needs Questionnaire (CNQ) and Sup- of unmet need are important as they provide direct portive Care Needs Survey (SCNS). This response for- information on consumer preferences that can be used mat has been rated as easy to follow and use by adult to develop optimally relevant and cost-effective services cancer populations [17,20,21]. [17]. Focus group with AYA cancer survivors Despite the lack of psychometrically rigorous unmet Adolescents and young adults with cancer were needs scales available for AYAs with cancer, recent stu- recruited through CanTeen Australia. CanTeen is the dies in the United States have indicated that the number peak support organisation in Australia for AYAs aged of unmet needs reported by this population group may 12-24 years affected by cancer. Six AYAs aged 14-19 be high [18]. As a consequence, there is a need to years participated in the focus group. Using the draft develop a scale to assess the unmet needs of AYAs questionnaire derived from the literature, participants which is relevant to both young people undergoing can- were askedto listissues or needswhich were most cer treatment, as well as to those in the post-treatment importantordifficultforthem andto provideother survivorship phase. The aim of this study was to establish the psycho- comments regarding item content, wording of questions metric properties of the Cancer Needs Questionnaire and ease of completion. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 3 of 11 http://www.hqlo.com/content/10/1/13 Feedback from health professionals’, researchers’ and the they found the response time-frame, “in the past general public month”, did not allow them to express all the concerns Health professionals from a regional hospital in New about unmet needs they had experienced throughout South Wales (NSW) Australia were nominated and their cancer journey, especially during treatment. There- invited by a paediatric oncologist to join a panel to fore, the time-frame of the response scale was modified review the draft needs instrument. Twelve health profes- to “any time since your cancer diagnosis” for five sionals participated in the panel which included one domains (Cancer Treatment Staff, Cancer Treatment paediatric oncologist, two paediatric haematologists, Centre, Education, Work and Information). For the three oncology nurses, one cancer care coordinator, one remaining three domains (Feelings, Relationships and social worker, one psychologist, one oncology pharma- Daily Life), the response time-frame remained “in the cist, one physiotherapist and one occupational therapist. last month”. All health professionals had experience working directly with AYA cancer populations. The panel were asked to Establish psychometric properties provide feedback on the content of the survey and sug- Description of the Cancer Needs Questionnaire - Young gest additional items. People (CNQ-YP) Eight researchers from Australia and Canada with Face and content validity was established using the pro- expertise in the development of unmet needs measures cedures above. The resulting measure had 139 items for cancer populations were asked to provide critical presented in eight domains: 1) Cancer Treatment Staff feedback on the domains, items and response scale of (36 items); 2) Cancer Treatment Centre (11 items); 3) the measure via email. A convenience sample of twelve Education (10 items); 4) Work (10 items); 5) Informa- individuals from the general population, who were tion (9 items); 6) Feelings (35 items); 7) Relationships known to the research team and were not from a medi- (18 items); and 8) Daily Life (10 items). Items were cal or research background, were also asked to provide ratedusing afive-pointresponsescalefrom “No Need” feedback on the questionnaire in terms of its language to “Very High Need”. and clarity. This sample included adult professionals, Items in the Education, Work and Relationships such as school teachers and engineers, as well as parents domain were only answered if they were relevant to the and AYAs who had not experienced cancer. AYA’s situation. Two screening questions determined Revision of measure whether the young person was currently studying, two Feedback and advice received from all participants led to screening questions determined whether the young per- a revised response scale and stem for the measure, and son was currently employed, and one screening question one extra domain (total of eight domains). The initial determined if the AYA had a “spouse/partner or boy- number of items was also modified. Four items were friend/girlfriend” or “sibling/s or step-brothers/sisters”. removed, and 31 items added taking the total number of Participants items from 108 to 139. Adolescents and young adults were eligible to partici- Pilot testing pate in the main trial if they: 1) had received treatment The measure was pilot tested with AYAs recruited from for cancer at one of seven identified treatment centres a population-based cancer registry in Australia. Adoles- in Australia; 2) had been diagnosed with an invasive cents and young adults who participated in the pilot cancer in the last five years (between 1 January 2004 were: 1) aged 14 to 19 years at diagnosis; and 2) had and 31 December 2009); 3) were aged 14 to 25 years been diagnosed with cancer in the last five years inclusive at the time of diagnosis (e.g. currently up to 30 (between January 1 2002 and December 31 2007). The years of age); and 4) had not participated in the pilot upper age limit of 19 years at diagnosis was selected, as study. Participants were also confirmed by their treating the World Health Organisation (WHO) defines adoles- clinician as: 5) having a lifeexpectancyofatleast 12 cents as being between 10-19 years of age [22]. The months; 6) being physically and mentally able to com- lower limit was chosen because, in Australia, AYAs aged plete a survey; and 7) being sufficiently literate in Eng- 14 years and older have the legal right to make their lish to complete the measure. own decisions about the type of health care they receive Procedure [23]. The eligibility criteria of 5 years since diagnosis Relevant institutional ethics approvals were obtained for ensuredthatthe sample comprisedofyoung people up the study. Recruitment commenced in August 2009 and to the age of 24 years. Details of the pilot study are pre- data collection was completed in May 2010. Adolescents sented elsewhere [24]. and young adults who met the eligibility criteria were Of the 32 AYAs who participated in the pilot test, identified from medical records at each treatment cen- 53% were female and 90% had completed treatment. A tre. The principal clinician at each treatment centre quarter of participants (25%, n = 8) commented that mailed a study information pack to eligible AYAs and Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 4 of 11 http://www.hqlo.com/content/10/1/13 sought permission to release their contact details to the Test-retest reliability research team. Those who agreed were mailed a survey AweightedCohen’s kappa coefficient (), was used to packet containing a reply paid envelope, a copy of the measure the level of agreement between responses at baseline (time 1) and retest (time 2). Items which had a CNQ-YP, and questions about demographic characteris- weighted kappa of > 0.60 were considered to have excel- tics including: marital status; language preferences; living lent test-retest reliability and were retained. To ensure arrangements; education; preferences regarding the sur- items related to high unmet needs were not dismissed, vey format and locations for survey completion; and items which did not obtain a weighted kappa of > 0.60 feedback of results to health professionals, treatment but for which > 20% of participants indicated having a centres, researchers and other organisations. Reminder letters were sent to non-responders at two weeks and a high or very high need, were also kept. reminder phone call was made at four weeks following Discriminative validity the initial mailout. In order to compare different groups of participants, Return of the completed measure was taken as a parti- factor scores were calculated by summing all raw scores cipant’s consent for their data to be included in the for items within the factor and dividing by the number study. In order to evaluate the test-retest reliability of of non-missing items. As all items in the measure were the measure, all participants who agreed to be contacted worded and scored in the same positive direction, no again were sent copies of the CNQ-YP one week follow- reversing of response scores for items was required. ing receipt of their initial survey and asked to complete Observations with missing values for > 50% of items the measure a second time. The one-week time-frame within a factor were excluded from the analysis. was chosen to minimise the chance that patients had Based on previous research [27-30], it was hypothe- substantial changes in their unmet needs or could recall sised that young people receiving treatment would have their previous responses [25]. a higher median factor score for all factors, compared Statistical analysis with young people who had finished treatment. A non- The demographic characteristics of AYAs were reported parametric Wilcoxon rank-sum test was computed to using descriptive statistics (frequencies, proportions, determine if any significant differences between the fac- tor scores of these two groups existed. means, medians and 95% confidence intervals). Differ- Responsiveness ences in the characteristics of consenters and non-con- Responsiveness was gauged using floor and ceiling senters were examined using the Chi-square statistic. effects. Factors where less than 5% of participants scored the lowest possible score or the highest possible score Psychometric evaluation were considered acceptable. Factor analysis Items which had greater than 90% of respondents indi- Acceptability cating the same level of need and items answered by ≤ Acceptability of the measure was assessed using the fol- 10% of respondents were excluded from the measure. lowing four questions: 1) “I found the instructions easy Observations with a missing value for any of the to follow"; 2) “I found the questions clear"; 3) “Ifound included items were excluded from the factor analysis the answer choices easy to understand"; and 4) “Ifound using list-wise deletion. Exploratory factor analysis using the questions distressing”. Items were scored on a five the principal components method (PCA) and Eigenvalue point Likert scale from “Strongly Disagree” to “Strongly > 1 rule was performed. Factors were orthogonally Agree”. The acceptability of the measure was reported rotated using the varimax procedure and factors which using frequencies, proportions, and 95% confidence accounted for greater than 5% of the variance were con- intervals. sidered important. Items which had a factor loading of > 0.40 on only one factor, or where > 20% of partici- Results pants indicated having a high or very high need for the Participants, response rates and consent bias item, were kept [26]. Spearman’s rank correlation coeffi- Five hundred and seventy-seven eligible AYAs were cient was then used to identify items which were highly identified by their clinicians’ at the treatment centres, correlated with each other (correlations > 0.90) and had and 280 of these (49%) consented to be contacted by the research team. Of the 280 young people contacted, < 20% of participants indicating a high or very high 139 (50%) returned a questionnaire. Of the 139 partici- need, which could be further excluded from the factors. pants who completed the measure at baseline (time 1), Internal consistency 101 (73%) consented to be contacted a second time and Items which had an item-total correlation with the total were sent a retest survey, with 34 (34%) completing the scale of < 0.20 were discarded from the measure. For measure at time 2. The time between being sent and each factor, a Cronbach’s coefficient alpha (a) value of > returning the retest measure ranged between 9 and 64 0.70 and < 0.95 was considered acceptable. Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 5 of 11 http://www.hqlo.com/content/10/1/13 Table 1 Demographic characteristics of consenters and Work domains were independently added to the factor non-consenters for the baseline study analysis, two additional factors were identified and 10 Demographic Non- Consenters Test statistic items were removed, taking the total number of factors Characteristic consenters (n = 139) to five. Five additional items from the Relationships sub- (n = 438) domains (Partners and Siblings) had significant loadings n (%) n (%) c df p > 0.40 on a single factor and all were added to Factor 2. Female 188 (43) 89 (64) 18.8 1 < An item-item Spearman correlation matrix for each of 0.01 the five factors and 108 items revealed that two items Non-haematological 243 (56) 73 (53) 0.31 1 0.58 from Factor 2 had correlations > 0.90. However, these ≥ 2 years post-diagnosis 293 (68) 99 (71) 0.56 1 0.45 items appeared to capture different aspects of the Median Median z p patient/staff relationship; therefore, neither item was (Q1-Q3) (Q1-Q3) removed from the measure. Age at diagnosis 22 (19-24) 21 (18-23) 2.24 0.03 Internal consistency Item-total correlations for items within all five factors days, with a median of 24 days (Q1 = 16 days, Q3 = 30 were > 0.20 and ranged from 0.33 to 0.88. All factors days). had Cronbach’s alphas of > 0.70, indicating good inter- The demographic characteristics of AYAs who con- nal consistency. sented to participate in the baseline study, and those Test-retest reliability AYAs who did not consent, can be seen in Table 1. Although traditionally performed prior to factor analysis, Consenters were significantly younger than non-consen- test-retest reliability was performed after factor analysis ters, and females were over-represented in the consent- in the present study due to the small sample size (n = ing sample. There were no significant differences 34). This allowed the number of items included in the between the demographic characteristics of AYAs who test-retest analysis to be reduced, thereby limiting the completed both the baseline and retest surveys, com- likelihood of type 1 error. Weighted kappa values pared to AYAs who completed the baseline survey only. between responses at time 1 and time 2 ranged from 0.09 to 0.94. Twenty-four items had a weighted kappa of Psychometric evaluation < 0.60 and < 20% of participants indicating a high or Factor analysis very high need, and were therefore excluded from the No items had > 90% of participants reporting the same measure leaving 84 items. level of need, indicating reasonable variability of Revised factor analysis and internal consistency responses within items. Only two items in the measure Following test-retest reliability analysis, factor analysis had missing values greater than 10% (items 126 and 128 was repeated to confirm the factor structure of the mea- from the Relationships domain). These two items were sure. One hundred and sixteen observations had no removed from the measure, leaving 137 items prior to missing values for any items and were included in the conducting factor analysis. analysis. The number of important factors increased Of the 139 participants who completed the measure, from five to six. The four main factors explained 63% of 111 observations had no missing values for any items the variance. Fourteen items did not have unique factor and were included in the analysis. Due to the screening loadings > 0.40 and were removed from the measure, questions, only a subset of AYAs completed the leaving 70 items. All but six items loaded on the same domains related to Education and Work, meaning there factor as in the previous factor analysis, with five of were different numbers of observations relating to dif- these loading on the new factor. The items and factor ferent participants. Therefore, the initial factor analysis loadings corresponding to these six factors are presented was undertaken without these two domains. Following in Table 2. the initial factor analysis, the Work and Education Internal consistency of the measure was re-calculated domains were added to the analysis, one at a time. on the shortened measure. Item-total correlations of the Initial factor analysis of the six main domains (112 of 70 items for all six factors were still > 0.20 and ranged 137 items) revealed 18 factors with Eigenvalues > 1. from 0.32 to 0.90. All factors maintained alphas > 0.70 When the factors were orthogonally rotated, three fac- (Table 3). tors accounted for greater than 5% of the variance. A Discriminative validity three-factor forced analysis and rotation confirmed that Of the 139 AYAs who completed the measure, six parti- the three-factor structure was the simplest and clearest. cipants were unsure of their treatment status and were Ninety-five items fell into these three factors and excluded from the known-groups comparison. Partici- accounted for 58% of the total variance, 17 items were pants receiving treatment had higher median factor removed. When the 20 items from the Education and scores than those who had finished treatment for all Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 6 of 11 http://www.hqlo.com/content/10/1/13 Table 2 Factor structure of the CNQ-YP from the revised factor analysis Item number Description of item Factor loading Factor Factor Factor Factor Factor Factor 1 2 3 4 5 6 Factor 1 - Treatment Environment and Care (n = 116) Cancer treatment staff telling 1 about my diagnosis 0.76 me: 2 what might happen during treatment 0.77 4 whether I had the option to decline treatment 0.54 5 about the short-term side-effects of treatment 0.73 6 about the long-term side-effects of treatment 0.65 7 my chances of a full recovery 0.78 8 what would happen when treatment finished 0.71 9 whether I would be able to have children 0.60 12 whether my treatment was working 0.87 13 my test results as soon as possible 0.87 14 the way I felt was normal 0.80 15 how to manage my medication 0.82 16 what I could do to stay healthy 0.67 17 what to do if I noticed a particular side-effect 0.74 Having cancer treatment staff 20 listened to my concerns 0.89 who: 21 treated me as an individual 0.87 22 were respectful 0.93 23 were approachable 0.91 24 were friendly 0.91 25 could have a laugh with me 0.90 26 explained what they were doing 0.89 27 spoke to me in a way that I could understand 0.90 28 let me talk about my feelings 0.77 29 let me ask questions 0.90 30 let me make decisions about my treatment 0.74 31 talked to me in private, without my family 0.66 Being able to have: 39 time to myself 0.55 41 privacy 0.51 42 pleasant surroundings 0.52 43 good food 0.45 46 a choice of cancer specialists 0.64 47 the same cancer staff throughout treatment 0.63 48 a choice of times for appointments 0.64 Factor 2 - Daily Life (n = 116) Being able to: 110 make plans or think about the future 0.51 Coping with: 102 changes in my physical ability 0.68 103 changes in my appearance 0.69 107 not being able to do the same things as other people 0.75 my age 117 my parent/s being over-protective 0.49 Managing: 134 pain 0.65 135 medication 0.48 136 physical side-effects of treatment 0.76 137 feeling tired 0.72 138 loss of mobility 0.65 142 to take part in social activities 0.71 143 to travel to social events 0.67 Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 7 of 11 http://www.hqlo.com/content/10/1/13 Table 2 Factor structure of the CNQ-YP from the revised factor analysis (Continued) Factor 3 - Feelings and Relationships (n = 116) Feeling: 84 frustrated 0.56 86 anxious or nervous 0.73 Worrying about: 91 my cancer spreading 0.76 92 my cancer returning 0.66 93 whether my cancer treatment has worked 0.68 95 having cancer treatment 0.70 97 how my family is coping 0.68 Finding: 98 inner strength 0.66 Being able to: 112 accept my diagnosis 0.60 113 be independent 0.51 Coping with: 125 changes in my relationship with my partner 0.53* 131 changes in my relationships with my sibling/s 0.59* Knowing how to: 132 ask my sibling/s for support 0.51* 133 give support to my sibling/s 0.52* Factor 4 - Information and Activities (n = 116) Being able to: 37 spend time with people my own age 0.44 38 talk to people my age who had been through a similar 0.69 experience Being able to have: 44 leisure spaces and activities 0.45 Finding information that: 75 was specifically designed for me 0.61 81 described relaxation techniques 0.54 Factor 5 - Education (n = 65) Being able to: 56 attend classes 0.69 58 get extensions or special consideration 0.74 59 get guidance about study options or future career 0.56 paths Factor 6 - Work (n = 90) Knowing: 71 how much work I would miss 0.67 72 how to ask managers/co-workers for support 0.78 74 that managers/co-workers had support to help them 0.76 cope % of Total Variance 31% 13% 11% 8% n/a n/a *AYAs only completed these items if relevant to their situation. Item 125 was completed by n = 54 participants, Items 131, 132 and 133 were completed by n = 96 participants. These items do not form part of the total variance explained. factors except Factors 5 and 6 ("Education and Work”), CI 48-64%) agreed that the answer choices were easy to however these differences were not statistically signifi- understand. Seventy-eight percent (n = 108, CI 71-84%) cant (see Table 4). of AYAs disagreed that the questions were distressing. Potential responsiveness The proportion of participants who scored the mini- Discussion mum and maximum scores for each factor can be seen This research attempted to establish the face and con- in Table 5. The proportion of participants ranged from tent validity, factor structure, internal consistency, test- 0% to 5.1% for the maximum score to 8.3% to 43% for retest reliability, discriminative validity, potential respon- the minimum score, with large proportions of partici- siveness and acceptability of the CNQ-YP using rigorous pants having floor effects in the “Education” and psychometric criteria. Factor analysis and the assessment “Work” factors (42% and 43% respectively). of test-retest reliability resulted in a final measure with Acceptability six factors and 70 items (75 items including the five When asked about the acceptability of the measure, 80% screening items): 1) Treatment Environment and Care of participants agreed that the instructions were easy to (33 items); 2) Daily Life (12 items); 3) Feelings and Rela- follow (n = 111, CI 72-86%), 73% agreed that the ques- tionships (15 items including 1 screening item); 4) Infor- tions were clear (n = 102, CI 65-80%) and 56% (n = 78, mation and Activities (5 items); 5) Education (5 items Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 8 of 11 http://www.hqlo.com/content/10/1/13 Table 3 Cronbach’s alpha for each Factor of the CNQ-YP cancer survivors [34], indicating that participants in psy- chosocial cancer research may be self-selected and are Description of factor Number of Cronbach’s items alpha only representative of a sub-population of survivors who Factor 1 - Treatment Environment/ 33 0.98 wish to talk about their experiences. Care The small sample size has implications for the statisti- Factor 2 - Daily Life 12 0.94 cal analyses undertaken, particularly the exploratory fac- Factor 3 - Feelings/Relationships 14 0.92 tor analysis. When performing factor analysis it is Factor 4 - Information/Activities 5 0.83 recommended that the number of participants in the Factor 5 - Education 3 0.82 sample be at least five times the number of items in the Factor 6 - Work 3 0.89 measure [35]. As there were 139 items in the original Total Scale 70 0.98 measure, only a 1:1 item-to-participant ratio was actu- ally achieved. This may have meant that some important items reported as high or very high unmet needs by including 2 screening items); and 6) Work (5 items smaller sub-samples of participants did not achieve high including 2 screening items). correlations with other items or factors in the measure There are a number of limitations related to the study [36]. However, as the inclusion criteria allowed items sample and methodology which should be considered which had greater than 20% of participants reporting a when interpreting these results. high or very high level of need to be retained, it is unli- kely that items considered important by sub-samples of Limitations AYAs were excluded. The primary limitation of the research was the size of The sample for the test-retest analysis was also small the sample achieved. Only 139 AYAs recruited through and the median time to return the retest measure was the seven treatment centres completed and returned the greater than the recommended 2-14 days [37]. Conse- measure (an overall response rate of 50%). Other studies quently, responses to the retest measure may have describing the development of measures for AYA cancer reflected a change in participants’ needs [37]. Despite patients have reported response rates of around 90% the longer than recommended retest period, the major- [28,30,31]. However, the age range of these samples (8- ity of items had acceptable kappa values (> 0.60), and as 20 years) was lower than in the current study (16-30 the time-frame for the response scale was either “any years). One study describing the development of a mea- time since your cancer diagnosis” or “in the last month”, sure for a similar age group (16-28 years) only achieved it is unlikely that the longer period of retest would have a response rate of 53% [32]. Reasons for lower response greatly affected the overall responses obtained. The rates with older AYA samples, compared with younger inclusion criteria also allowed items which had a low samples, are speculative. AYAs in this age group are weighted kappa value but a large proportion of partici- highly mobile [7,33]. Therefore, it is possible that a large pants(>20%)reporting ahighorveryhighlevel of proportion of AYAs may not have received the ques- need to remain in the measure, further ensuring that tionnaire because of incorrect contact details. It is also important items were not excluded. possible that some young people were not interested in Although small, the overall sample included partici- participating in this type of research or perceived that pants from five states and both large- and small-volume the research was not relevant to their current circum- treatment centres for AYA cancer patients. Therefore, it stances. Low participation may be especially applicable is likely that a wide range of young people were to psychosocial research studies where personal issues involved. Those who consented to take part in the study such as feelings and emotions related to cancer are dis- were slightly younger and more likely to be female than cussed. Similar results have been found with adult breast Table 4 Comparison of factor scores between AYAs receiving treatment and AYAs finished treatment Factor Receiving Treatment Finished Treatment Wilcoxon rank sum n median Q1 Q3 n median Q1 Q3 zp 1 - Treatment Environment/Care 17 1.8 1.1 2.1 116 1.5 1.2 2.2 0.32 0.75 2 - Daily Life 17 2.3 1.1 3.2 115 1.4 1.0 2.2 1.46 0.14 3 - Feelings/Relationships 17 2.4 1.6 2.6 115 1.5 1.2 2.3 1.81 0.07 4 - Information/Activities 17 3.6 1.6 3.8 116 2.2 1.5 2.8 1.58 0.11 5 - Education 11 1.3 1.0 2.0 67 1.7 1.0 2.7 -0.92 0.36 6 - Work 13 1.3 1.0 3.0 94 1.3 1.0 2.0 0.53 0.60 Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 9 of 11 http://www.hqlo.com/content/10/1/13 Table 5 Floor and ceiling effects per factor Factor Lowest possible score Highest possible score n n (%) n (%) Factor 1 - Treatment Environment/Care 133 11 (8.3) 1 (0.8) Factor 2 - Daily Life 132 36 (27) 0 (0.0) Factor 3 - Feelings/Relationships 132 19 (14) 0 (0.0) Factor 4 - Information/Activities 133 16 (12) 6 (4.5) Factor 5 - Education 78 33 (42) 4 (5.1) Factor 6 - Work 107 46 (43) 4 (3.7) those who did not consent. However, participation by have at least some domains with alphas > 0.70, no scales AYAs with a range of cancer types, at different stages achieved alphas greater than 0.70 for all domains [16]. since their cancer diagnoses, increases the probability In the case of the Perceived Illness Experience Scale that the items identified as important in the measure (PIE), only two out of nine domains had alpha values > represent the views of the larger AYA cancer 0.70, showing variability in the internal consistency of population. these measures [16]. Finally it should be noted that, apart from infertility, A further strength of this study is that it assessed test- issues surrounding other aspects of sexual health and retest reliability, unlike many other studies reporting the development of measures for cancer patients and survi- intimacy were not raised in focus group discussions or vors [16,39]. All but four items in the measure had in the pilot study. Such items were therefore not incor- porated into the measure. The absence of these items weighted kappa values > 0.60, and these four items all may reflect the young age of participants in the pilot had weighted kappas > 0.49. In comparison, a recent study compared to participants in the main trial. It is review found that test-retest reliability was reported for recommended that issues surrounding sexual health are only one instrument measuring quality of life in AYA further investigated in future scale development. cancer survivors [16]. However, for this measure ICCs were only reported at the domain level rather than the Psychometric strengths of the CNQ-YP item level. This can be misleading as, although total Despite the difficulties with recruitment, the current agreement levels for the domain may be high, agreement study had a number of strengths related to the psycho- for individual items may vary [40]. metric development of the CNQ-YP and the measure compared favourably with recognised psychometric cri- Recommended improvements for the CNQ-YP teria. Reliability and validity of the CNQ-YP was exam- In the current study, the CNQ-YP was unable to distin- ined using appropriate psychometric methods. The final guish between AYAs currently receiving treatment and factor structure of the CNQ-YP showed that the four those who had completed treatment. For Factors 1, 4, 5 main factors accounted for 63% of the variance. This and 6 (Treatment Environment and Care, Information was considered acceptable, as the average variance and Activities, Education, and Work) this may have accounted for by exploratory factor analysis is around been because the response time-frame was “any time 60% [36]. This outcome also compares well with other since diagnosis”. Therefore, patients who had completed quality of life measures developed for AYA cancer survi- treatment may have been reflecting a need level they vors, such as the Adolescent Quality of Life Instrument had while receiving treatment. The small sample size in (AQoL) which reported having six factors representing the receiving treatment group (n = 17) may have also 67% of the variance [31], and the Quality of Life - Can- limited the power for hypothesis testing. There was a cer Survivors (QOL-CS) instrument which also has six non-significant trend toward AYAs receiving treatment factors accounting for 56% of the variance [32]. reporting higher needs related to Feelings and Relation- In addition, the CNQ-YP achieved high Cronbach’s ships. This could be further explored with a larger alphas, with all six factors reporting alphas greater than sample. 0.80.Itispossiblethatsomealpha valuesmayhave The CNQ-YP did not appear to have a ceiling effect been artificially high due to the large number of items (< 5.1% of participants scored the highest possible score in the factors [25,38]. However, no items had correla- in each domain). However, there was a large floor effect tions < 0.20, and alphas > 0.80 were also reached in Fac- for all domains. This may have implications for inter- tors 5and 6(WorkandEducation),bothofwhichhad vention studies where researchers wish to measure a only three items. Although most of the available quality reduction in needs, as a large proportion of participants of life measures developed for AYA cancer survivors (between 8.3% and 43%) are already scoring the Clinton-McHarg et al. Health and Quality of Life Outcomes 2012, 10:13 Page 10 of 11 http://www.hqlo.com/content/10/1/13 Authors’ contributions minimum possible scores for each factor. However, fac- TCM, MC, RSF and AS were responsible for the initial study design. All tors with the largest floor effects (Education 42% and authors developed and refined the measure. TCM and MC coordinated Work 43%) were only completed by a sub-group of par- recruitment and data collection. TCM, MC and CD conducted psychometric analysis. All authors contributed to drafting, revising and approving the final ticipants. Therefore, a larger sample of AYAs may pro- manuscript. duce different results. These floor effects may also indicate that the majority of young people do not Competing interests The authors declare that they have no competing interests. experience high levels of need in these areas. However, the Education factor also had the highest ceiling effect Received: 31 August 2011 Accepted: 30 January 2012 (5.1%), suggesting that this is probably not the case. Published: 30 January 2012 Testing of convergent and divergent validity, respon- References siveness and predictive validity was beyond the scope of 1. Birch JM, Pang D, Alston RD, Rowan S, Geraci M, Moran A, Eden TOB: the present study. It is recommended that future psy- Survival from cancer in teenagers and young adults in England, 1979- chometric testing of the measure be undertaken to 2003. Br J Cancer 2008, 99(5):830-835. 2. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 explore these issues further. The small sample size Years of Age, Including SEER Incidence and Survival: 1975-2000. 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