Development of a health assessment instrument for people with intellectual disabilities: a Delphi study

Development of a health assessment instrument for people with intellectual disabilities: a Delphi... Abstract Background People with intellectual disabilities (IDs) experience health inequalities. Applying health assessments is one way of diminishing these inequalities. A health assessment instrument can support general practitioners (GPs) in providing better medical care to people with ID. Objectives The aim of this study was to determine which items should be part of a health assessment instrument for people with ID to be used in primary care. Methods This Delphi consensus study was conducted among 24 GP experts and 21 ID physicians. We performed three anonymous sequential online questionnaire rounds. We started with 82 ‘general’ items and 14 items concerning physical and additional examinations derived from the international literature and a focus group study among Dutch GPs. We definitely included items if more than 75% of the GP experts agreed on their inclusion. Results The participation rate in all rounds was above 88%. The expert groups proposed 10 new items. Consensus was reached on 64 ‘general’ items related to highly prevalent diseases, public health and health promotion. Consensus was also reached on 18 physical and additional examination items. Conclusions For the first time, experts in a Delphi study were able to arrive at a selection of items for a health assessment instrument for people with ID. The overall agreement among the GPs and ID physicians was good. Because the experts prefer that patients complete the health assessment questionnaire at home, questions that cover these items must be formulated clearly. Delphi technique, developmental disabilities, health assessment instrument, health promotion, intellectual disabilities, primary health care, public health Introduction People with intellectual disabilities (ID) are a vulnerable group of human beings. They often have low socioeconomic status, a fundamental determinant of health (1). ID are defined as a significant reduction in ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in reduced ability to cope independently, which, in turn, leads to impaired social functioning (2). People with ID frequently experience difficulties in expressing themselves (3). Difficulties in recognizing the signs of disease and expressing them can lead to delays on the part of both patients and doctors (4). The problems in accessing health care and receiving appropriate investigations, diagnoses and treatments cause premature deaths and increase morbidity (5,6). All of this results in experiences of health inequalities. Applying health assessments is one way of diminishing these health inequalities. Patients with ID can be identified through a ‘Read Code’ (as in Great Britain), entitlement to social welfare payment, or ICPC code P85.00, or ICD code F90-73, depending on the identification system used and appropriate in each country. Studies on primary care for adults with ID have shown that health assessments result in new disease detection, improved health promotion and increased participation in preventive activities (7–9). Felce et al. state that annual health checks are justifiable; these do not reduce the number of needs found (10). People with ID, their (professional) caregivers and health professionals acknowledge the value of health assessments (11–16). Studies have shown that health assessments are cost-effective (7,17). Health assessments for people with ID in primary care are not yet applied in the Netherlands. Medical care for people with ID in the Netherlands is provided by either general practitioners (GPs) or ID physicians. ID physicians are physicians who have undertaken 3 years of vocational training. They deliver medical care to people with ID living in residential care facilities. Nowadays, most residential care facilities have an outpatient clinic to which GPs can refer patients with ID. GPs deliver medical care to all patients with ID living in the community. A Dutch study showed that GPs experience difficulties in providing medical care to this vulnerable group of patients. GPs have a lack of knowledge about specific diseases in patients with ID (18). In a focus group study, GPs pointed out that they feel responsible for the medical care for people with ID. To deliver good care, GPs need tools, education and support (19). As a tool, health assessment instruments can support GPs in providing medical care to people with ID. There is, however, no such tool available in the Netherlands. Moreover, the health assessment instruments available present deficiencies in terms of their development, clinimetrics, content and effectiveness (20). Our purpose is to develop a health assessment instrument for people with ID based on valid scientific principles. As earlier research has pointed out that the content of existing health assessment instruments exhibits deficiencies, the aim of our study is to explore among GPs and ID physicians, which items should be part of a health assessment instrument for people with ID to be used in primary care. Methods Study design The Delphi technique is a widely used method for gathering data from expert respondents with the aim of achieving consensus on variables for the topic under investigation (21). In our Delphi study, we investigated consensus on items to be included in a primary care health assessment instrument for people with ID. We took into account the methodological criteria cited in the review by Diamond et al. (22). In accordance with these Delphi criteria, respondents anonymously took part in three sequential online questionnaire rounds. After each round, the respondents received feedback enabling them to reconsider their views based on the report of the overall results including the views of the other members of the group. The advantage of a structured Delphi method is that the opinion of the group cannot be dominated by the views of a few. Communication among experts is avoided. Another advantage of the Delphi method is that less of the experts’ time is wasted by travelling and engaging in long meetings. Participants We invited GPs interested in this field (GP experts) and ID physicians to participate. GPs are the professionals who have to carry out the health assessments; ID physicians are professionals with a higher level of education and expertise in the ID field. We aimed for 10–15 participants per group (22,23). The respondents who agreed to participate after this invitation (which implied informed consent) received the questionnaires by e-mail. At the end of the first questionnaire, they filled in some personal questions (e.g. years of experience as medical doctor, specialization, age, sex, the estimated number of people with ID in their practice). The participants were offered a 20 euro gift voucher in appreciation of their contribution. Approval of an ethics committee was not required according to Dutch legislation. Delphi process We developed the first set of items based on information extracted from the two most preferred health assessment instruments—the Stay Well and Healthy! Health Risk Appraisal (SWH-HRA) and the Comprehensive Health Assessment Programme (CHAP) —according to an earlier review study and from information from a focus group study with 23 GPs (8,19,20,24). As the total number of items exceeded the number that could be addressed in a reasonable time in the online survey, two researchers, PL (a GP) and EB (an ID physician), first independently reduced the set of items, discussed their findings and reached consensus. Next, this reduced set was discussed within the whole research group, who had access to the original information. This reduced set consisted of 82 ‘general’ items and 14 items on physical and additional examinations. At the start of the study, we decided to have a maximum of three online rounds. Two review studies on Delphi procedures indicated that this is a reasonable number of rounds (25,26). We pilot tested the three questionnaires to identify ambiguities and errors. Consensus definition We defined consensus as reached when more than 75% of the GP experts agreed (said ‘yes’) to the inclusion of an item as part of the health assessment instrument (25). This consensus on the part of GP experts was motivated by the fact that the primary care health assessment instrument would be used by GPs. The information and consensus provided by ID physicians were used as additional information for the GP experts as ID physicians are more experienced in medical care for people with ID. The online questionnaires were developed in LimeSurvey (version 1.92). As a formal measure of agreement between the rounds, we calculated the change in percentage agreement per item (25). For the quantitative data analysis, SPSS (version 22) was used. Procedure Figure 1 presents an overview of the procedure. In the first round, all the participants (GP experts and ID physicians) were asked to give their opinion (yes, no, no opinion) regarding the inclusion of items. All items were arranged thematically (e.g. gastroenterology; constipation, dysphagia). Each theme ended with an open field in which the participants could provide comments or suggestions for new items. The information received from the open fields was analysed qualitatively. In the second round, we represented the items that obtained 50–75% consensus, together with new items proposed in the first round. These new items could also be ‘old’ items from the first round presented in a different way based on the suggestions made in the first round. The participants were given information about the exact percentage of agreement in both expert groups, as well as additional information received from the open field comments. In the third and final round, the participants received feedback on the ‘near’ final list of items included. The new items proposed in the first round and obtained 50–75% consensus in the second round were represented for the last time. In addition, this round was used to pose 10 questions to obtain further information and opinions concerning the application and implementation of the primary care health assessment instrument. Figure 1. View largeDownload slide Flow chart of the item-consensus procedure (2016) for the development of a health assessment instrument for people with ID. Figure 1. View largeDownload slide Flow chart of the item-consensus procedure (2016) for the development of a health assessment instrument for people with ID. Results Participants Forty GP experts and 25 ID physicians received an invitation to take part in this study. Twenty-four GP experts and 21 ID physicians replied that they were willing to take part. After the first round, two participants (1 GP and 1 ID physician) resigned, one due to time constraints and the other due to feeling uncomfortable with being called an expert. In all the three rounds, 20 GPs and 18–20 ID physicians participated (Supplementary Figure S1). The participation rate in all rounds was above 88%. In both groups, the range in age (30–65 years) was well balanced. Overall, 70% of the participants were female (75% in the ID physician group and 60% in the GP group), which resembles the actual situation in the field. The participants had an average of 16 years of medical experience. Final item selection Overall, consensus was reached on 64 ‘general’ items to be included in the list (Table 1). The 14 items on physical and additional examinations were rearranged into new items using the information provided during the rounds. Consensus was reached on 18 items concerning physical and additional examinations (see H1, H2 and H3 in Table 1). The overall agreement among the GP experts and ID physicians was good. ID physicians provided more additional comments. Table 1. Final overview of health assessment items on which GPs reached consensus in the 2016 Delphi study A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) View Large Table 1. Final overview of health assessment items on which GPs reached consensus in the 2016 Delphi study A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) View Large Flow of inclusion of ‘general’ items Figure 2 shows the flow of inclusion of the ‘general’ items in all three rounds. Originally, 82 ‘general’ items were presented to the participants in the first round. The participants reached consensus (>75% agreement) on 44 ‘general’ items. An overview of these items can be found in the Supplementary material. Six items were rejected (<50% agreement) in this round (cryptorchidism, male genitals, urinary tract general information, posture, hobbies, reason for medication). Full agreement (100%) in both expert groups was reached during the first round on nine items: vision, hearing, gastro-oesophageal reflux disease (GERD), defecation (problems), behaviour (changes), smoking, alcohol and drug (use) and sports (activities). The GP experts fully agreed (100%) on dental care and weight loss/gain. Figure 2. View largeDownload slide Flow of inclusion of ‘general’ items throughout Delphi rounds one, two and three for the development of a health assessment instrument for people with ID (2016). *See Supplementary Table S1, **See Supplementary Table S2, ***See Table 2. Figure 2. View largeDownload slide Flow of inclusion of ‘general’ items throughout Delphi rounds one, two and three for the development of a health assessment instrument for people with ID (2016). *See Supplementary Table S1, **See Supplementary Table S2, ***See Table 2. In the second round, the remaining 32 ‘general’ items with agreement of 50–75% and 10 new ‘general’ items (Table 2) were (re)presented to both expert groups. Supplementary Table S2 shows the changes in agreement (%) between the first and second rounds. The items with an asterisk (*) were presented in the second round with additional information from the first round. Table 2. New health assessment items proposed by GPs and ID physicians in the Delphi study (2016) Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Light grey indicates 100% in one expert group. Middle grey indicates >75% GP expert group: inclusion. Dark grey indicates 100% in both expert groups. aNew items presented in round 2 for the first time. bNew items in 2nd represented in 3rd round with additional qualitative information. View Large Table 2. New health assessment items proposed by GPs and ID physicians in the Delphi study (2016) Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Light grey indicates 100% in one expert group. Middle grey indicates >75% GP expert group: inclusion. Dark grey indicates 100% in both expert groups. aNew items presented in round 2 for the first time. bNew items in 2nd represented in 3rd round with additional qualitative information. View Large Both expert groups reached full agreement (100%) on psychiatric problems. The items work (paid or unpaid) and day care were replaced by a new item, ‘meaningful daily activities’, on which agreement had been reached. Table 2 shows the new ‘general’ items proposed in the first round. All 10 new ‘general’ items were suggested by ID physicians. Of these, skin diseases and sexually transmitted diseases (STDs) were also mentioned by the GP experts. Both expert groups reached full agreement on STDs. The GP experts reached full agreement on the items ‘Do not resuscitate’ (DNR) and ‘Treatment limitations’. In total, for another 20 items (Table 2 and Supplementary Table S2), the agreement among the GPs was above 75%. Inclusion of items concerning physical and additional examinations Both expert groups agreed (95%) that physical and additional examinations should be part of the health assessment instrument. The information provided in the first round on the items concerning physical and additional examinations suggested a rearrangement of those items into new ones. These rearrangements were based on existing guidelines on physical examination in both fields (primary care and ID medicine). Some of the original first round items, i.e. specific blood tests (e.g. haemoglobin/mean corpuscular volume [Hb/MCV], glucose, thyroid-stimulating hormone [TSH] screening) and urine samples, were omitted. The experts agreed that blood and/or urine tests should only be undertaken when indicated by the results of the questionnaire. New items that came forward were general impression, consciousness, hearing (with the help of the whispered speech picture chart), dysmorphology, observation of communication and locomotion. Finally, more than 75% agreement was achieved on the following items: general impression, consciousness, length/weight/body mass index (BMI), blood pressure, pulse, auscultation of the heart, otoscopy, hearing (with the help of the whispered speech picture chart) (27), dysmorphology, observation of communication and locomotion. Other investigations/examinations (referrals to a clinical geneticist, referrals for vision or hearing tests) should only take place when indicated by the results of the questionnaire (see section H, Table 1). Opinions concerning the application and implementation of the primary care health assessment instrument In the third round, it became very clear that the experts (GPs and ID physicians) would like the patient and carer to complete the questionnaire (partly) at home. The experts also agreed on the fact that the outcome of the questionnaire should be easy to introduce in their electronic medical system. The GPs could use some support. The practice nurse was mentioned in this context, but not without training on the subject. Ninety-five per cent of the experts were in favour of a final action plan as a follow-up to the health assessment. Conclusions Summary In this study, we aimed to generate agreement concerning a list of items that should be part of a primary care health assessment instrument for people with ID. Our research group selected 82 ‘general’ items and 14 items on physical and additional examinations based on a review of the literature. The experts had the opportunity to propose new items and provide additional qualitative suggestions. They suggested 10 new items and proposed a rearrangement of the items on physical and additional examinations. After three rounds, agreement was reached on 64 ‘general’ items and on 18 items concerning physical and additional examinations. The overall agreement among the GP experts and ID physicians was good. Strengths and limitations We conducted this Delphi study according to the key methodological criteria proposed by Diamond et al.’s review (25). For example, before we started, we defined the criteria for agreement (>75%) on the uptake of an item, specified the planned number of rounds and established criteria for dropping items in each round. The participation rate was high, above 88%, in all three rounds (Fig. 2). All experts had experience of and an affinity with medical care for people with ID. This is both a strength and weakness of the study. This study represents the opinions of GP experts and ID physicians with experience in this field. GPs with less experience may not be convinced by these results. The Netherlands is the only country in the world with medical specialists in ID: ID physicians. Their participation reinforced the quality of the procedure of reaching consensus as they suggested all new items and provided more additional comments. For only five items (osteoporosis, involvement of medical specialists, skin problems, chest pain and arthralgia), we found remarkable differences among GP experts and ID physicians (Table 2, Supplementary Tables S1 and S2). These differences may reflect the different prevalence in primary care versus specialist care (28,29). The item set presented to the participants was selected by two researchers (a GP and an ID physician) and discussed by the whole research group. Although the participants were able to come forward with new items, it is possible that a different selection of the items originally presented would have resulted in a different final list. Comparison with existing literature In the scientific literature, the development of four other primary care health assessment instruments for people with ID has been described. Two of these (the ‘Preventive care checklist for adults with developmental disabilities’ and the ‘OK health check’) were developed through a (Delphi) consensus procedure (30,31). As in our study, the participants in those studies were experts on medical care for people with ID. Our experts agreed on the inclusion of falls and mobility. These two items are not included in the ‘Preventive care checklist for adults with developmental disabilities’ (31). In the latter, osteoporosis and thyroid diseases are included, whereas they were excluded from our final list, as well as from the ‘OK health check’. Items on sexual health, falls and GERD are not part of the ‘OK health check’ (30). Two other health assessment instruments (the ‘Health toolkit’ and ‘Let’s get healthy together’) were constructed through focus group discussions (32,33). The participants in the focus group discussions were people with ID and/or their caregivers. As expected, the set of medical items included (section A, Table 1) in our study is more detailed than the set that proposed in the focus group studies (20). In our study, the experts mentioned that they expected that practice nurses could give support. This is confirmed by a study that showed that health assessments for people with ID provided by practice nurses produced health care improvements and were more optimal than standard care, being both cheaper and more effective (7). The European assessment system called the EASY-Care standard is a comprehensive instrument that can be used in primary and community settings for the geriatric population (34). Although the domains found in our study, e.g. finances, differ with the EASY-Care, there are also similarities (seeing-hearing-communication, mobility, prevention, mental health and well-being). An eye-catching difference between the consensus items found in our study and ‘subjects/items’ questioned in the EASY-Care standard is the domain of high-prevalence diseases. GPs have reported a lack of knowledge about specific diseases in patients with ID (35). Implications for future research and practice Items that should be part of a health assessment instrument have been selected in this study. The results of this study imply the need for a newly developed health assessment instrument. This is the first step. The experts (GPs and ID physicians) prefer that patients and carers complete the health assessment questionnaire, at least in part, at home. It is not sufficient to simply pass on the items on which consensus was reached to the patient and carer and ask them to ‘Tell me more about…(vision, ..... constipation,etc.). The next step will be to formulate clearly formulated questions that encompass these items. This implies that each question should be understood in a consistent way and should provide unambiguous answers that inform the GP additionally regarding the specific item. Malpass et al. showed that lack of attention to this aspect leads to ambiguous questions and consequently to questionable validity (36). Another important step will be to further refine this health assessment instrument made after GPs have used the tool in daily practice. This will be the subject of further study. Supplementary material Supplementary material is available at Family Practice online. Declaration Funding: This study was funded by the consortium ‘Stronger on your own feet’, in which the Radboud University Medical Centre collaborates with the following care organizations for people with ID: Pluryn, Siza, Dichterbij, Oro, de Driestroom, ‘s Heeren Loo, Philadelphia, de Twentse zorg centra and Koraalgroep. The funders had no influence on the study design, data collection or writing of the manuscript. Ethical approval: According to Dutch legislation, approval from an ethics committee was not required. Conflict interest: The authors have no conflict of interest to declare. References 1. Emerson E , Hatton C , Robertson J , Baines S . Perceptions of neighbourhood quality, social and civic participation and the self rated health of British adults with intellectual disability: cross sectional study . BMC Public Health 2014 ; 14 : 1252 . Google Scholar CrossRef Search ADS PubMed 2. WHO . 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Development of a health assessment instrument for people with intellectual disabilities: a Delphi study

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Abstract

Abstract Background People with intellectual disabilities (IDs) experience health inequalities. Applying health assessments is one way of diminishing these inequalities. A health assessment instrument can support general practitioners (GPs) in providing better medical care to people with ID. Objectives The aim of this study was to determine which items should be part of a health assessment instrument for people with ID to be used in primary care. Methods This Delphi consensus study was conducted among 24 GP experts and 21 ID physicians. We performed three anonymous sequential online questionnaire rounds. We started with 82 ‘general’ items and 14 items concerning physical and additional examinations derived from the international literature and a focus group study among Dutch GPs. We definitely included items if more than 75% of the GP experts agreed on their inclusion. Results The participation rate in all rounds was above 88%. The expert groups proposed 10 new items. Consensus was reached on 64 ‘general’ items related to highly prevalent diseases, public health and health promotion. Consensus was also reached on 18 physical and additional examination items. Conclusions For the first time, experts in a Delphi study were able to arrive at a selection of items for a health assessment instrument for people with ID. The overall agreement among the GPs and ID physicians was good. Because the experts prefer that patients complete the health assessment questionnaire at home, questions that cover these items must be formulated clearly. Delphi technique, developmental disabilities, health assessment instrument, health promotion, intellectual disabilities, primary health care, public health Introduction People with intellectual disabilities (ID) are a vulnerable group of human beings. They often have low socioeconomic status, a fundamental determinant of health (1). ID are defined as a significant reduction in ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in reduced ability to cope independently, which, in turn, leads to impaired social functioning (2). People with ID frequently experience difficulties in expressing themselves (3). Difficulties in recognizing the signs of disease and expressing them can lead to delays on the part of both patients and doctors (4). The problems in accessing health care and receiving appropriate investigations, diagnoses and treatments cause premature deaths and increase morbidity (5,6). All of this results in experiences of health inequalities. Applying health assessments is one way of diminishing these health inequalities. Patients with ID can be identified through a ‘Read Code’ (as in Great Britain), entitlement to social welfare payment, or ICPC code P85.00, or ICD code F90-73, depending on the identification system used and appropriate in each country. Studies on primary care for adults with ID have shown that health assessments result in new disease detection, improved health promotion and increased participation in preventive activities (7–9). Felce et al. state that annual health checks are justifiable; these do not reduce the number of needs found (10). People with ID, their (professional) caregivers and health professionals acknowledge the value of health assessments (11–16). Studies have shown that health assessments are cost-effective (7,17). Health assessments for people with ID in primary care are not yet applied in the Netherlands. Medical care for people with ID in the Netherlands is provided by either general practitioners (GPs) or ID physicians. ID physicians are physicians who have undertaken 3 years of vocational training. They deliver medical care to people with ID living in residential care facilities. Nowadays, most residential care facilities have an outpatient clinic to which GPs can refer patients with ID. GPs deliver medical care to all patients with ID living in the community. A Dutch study showed that GPs experience difficulties in providing medical care to this vulnerable group of patients. GPs have a lack of knowledge about specific diseases in patients with ID (18). In a focus group study, GPs pointed out that they feel responsible for the medical care for people with ID. To deliver good care, GPs need tools, education and support (19). As a tool, health assessment instruments can support GPs in providing medical care to people with ID. There is, however, no such tool available in the Netherlands. Moreover, the health assessment instruments available present deficiencies in terms of their development, clinimetrics, content and effectiveness (20). Our purpose is to develop a health assessment instrument for people with ID based on valid scientific principles. As earlier research has pointed out that the content of existing health assessment instruments exhibits deficiencies, the aim of our study is to explore among GPs and ID physicians, which items should be part of a health assessment instrument for people with ID to be used in primary care. Methods Study design The Delphi technique is a widely used method for gathering data from expert respondents with the aim of achieving consensus on variables for the topic under investigation (21). In our Delphi study, we investigated consensus on items to be included in a primary care health assessment instrument for people with ID. We took into account the methodological criteria cited in the review by Diamond et al. (22). In accordance with these Delphi criteria, respondents anonymously took part in three sequential online questionnaire rounds. After each round, the respondents received feedback enabling them to reconsider their views based on the report of the overall results including the views of the other members of the group. The advantage of a structured Delphi method is that the opinion of the group cannot be dominated by the views of a few. Communication among experts is avoided. Another advantage of the Delphi method is that less of the experts’ time is wasted by travelling and engaging in long meetings. Participants We invited GPs interested in this field (GP experts) and ID physicians to participate. GPs are the professionals who have to carry out the health assessments; ID physicians are professionals with a higher level of education and expertise in the ID field. We aimed for 10–15 participants per group (22,23). The respondents who agreed to participate after this invitation (which implied informed consent) received the questionnaires by e-mail. At the end of the first questionnaire, they filled in some personal questions (e.g. years of experience as medical doctor, specialization, age, sex, the estimated number of people with ID in their practice). The participants were offered a 20 euro gift voucher in appreciation of their contribution. Approval of an ethics committee was not required according to Dutch legislation. Delphi process We developed the first set of items based on information extracted from the two most preferred health assessment instruments—the Stay Well and Healthy! Health Risk Appraisal (SWH-HRA) and the Comprehensive Health Assessment Programme (CHAP) —according to an earlier review study and from information from a focus group study with 23 GPs (8,19,20,24). As the total number of items exceeded the number that could be addressed in a reasonable time in the online survey, two researchers, PL (a GP) and EB (an ID physician), first independently reduced the set of items, discussed their findings and reached consensus. Next, this reduced set was discussed within the whole research group, who had access to the original information. This reduced set consisted of 82 ‘general’ items and 14 items on physical and additional examinations. At the start of the study, we decided to have a maximum of three online rounds. Two review studies on Delphi procedures indicated that this is a reasonable number of rounds (25,26). We pilot tested the three questionnaires to identify ambiguities and errors. Consensus definition We defined consensus as reached when more than 75% of the GP experts agreed (said ‘yes’) to the inclusion of an item as part of the health assessment instrument (25). This consensus on the part of GP experts was motivated by the fact that the primary care health assessment instrument would be used by GPs. The information and consensus provided by ID physicians were used as additional information for the GP experts as ID physicians are more experienced in medical care for people with ID. The online questionnaires were developed in LimeSurvey (version 1.92). As a formal measure of agreement between the rounds, we calculated the change in percentage agreement per item (25). For the quantitative data analysis, SPSS (version 22) was used. Procedure Figure 1 presents an overview of the procedure. In the first round, all the participants (GP experts and ID physicians) were asked to give their opinion (yes, no, no opinion) regarding the inclusion of items. All items were arranged thematically (e.g. gastroenterology; constipation, dysphagia). Each theme ended with an open field in which the participants could provide comments or suggestions for new items. The information received from the open fields was analysed qualitatively. In the second round, we represented the items that obtained 50–75% consensus, together with new items proposed in the first round. These new items could also be ‘old’ items from the first round presented in a different way based on the suggestions made in the first round. The participants were given information about the exact percentage of agreement in both expert groups, as well as additional information received from the open field comments. In the third and final round, the participants received feedback on the ‘near’ final list of items included. The new items proposed in the first round and obtained 50–75% consensus in the second round were represented for the last time. In addition, this round was used to pose 10 questions to obtain further information and opinions concerning the application and implementation of the primary care health assessment instrument. Figure 1. View largeDownload slide Flow chart of the item-consensus procedure (2016) for the development of a health assessment instrument for people with ID. Figure 1. View largeDownload slide Flow chart of the item-consensus procedure (2016) for the development of a health assessment instrument for people with ID. Results Participants Forty GP experts and 25 ID physicians received an invitation to take part in this study. Twenty-four GP experts and 21 ID physicians replied that they were willing to take part. After the first round, two participants (1 GP and 1 ID physician) resigned, one due to time constraints and the other due to feeling uncomfortable with being called an expert. In all the three rounds, 20 GPs and 18–20 ID physicians participated (Supplementary Figure S1). The participation rate in all rounds was above 88%. In both groups, the range in age (30–65 years) was well balanced. Overall, 70% of the participants were female (75% in the ID physician group and 60% in the GP group), which resembles the actual situation in the field. The participants had an average of 16 years of medical experience. Final item selection Overall, consensus was reached on 64 ‘general’ items to be included in the list (Table 1). The 14 items on physical and additional examinations were rearranged into new items using the information provided during the rounds. Consensus was reached on 18 items concerning physical and additional examinations (see H1, H2 and H3 in Table 1). The overall agreement among the GP experts and ID physicians was good. ID physicians provided more additional comments. Table 1. Final overview of health assessment items on which GPs reached consensus in the 2016 Delphi study A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) View Large Table 1. Final overview of health assessment items on which GPs reached consensus in the 2016 Delphi study A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) A Detection of highly prevalent diseases in the ID population A1 Sensory impairment Vision Hearing A2 Gastrointestinal tract GERD Swallowing problems/choking Defecation problems Constipation Weight gain/loss A3 Urogenital tract Difficulty urinating Urine incontinence STD (Rec.)urine tract infections Sexuality Menstrual problems Contraceptives A4 Locomotion system Moblity problems Falls Arthralgia A5 Cardiorespiratory tract Sleeping in upright position Respiratory tract problems long heart disease Chestpain Shortage of breath aspiration pneumonia Coronary problems Allergies A6 Neurology Sleep Memory problems Pain Epilepsy Functional decline A7 Additional Dental care B Detection of behavioural, psychological or psychiatric problems Behaviour Behavioural changes Psychiatric problems C Focus on public health Breast cancer screening Immunisations Colon cancer screening D Focus on health promotion D1 Substance use Smoking Alcohol consumption Drug use D2 Life style Sports Outside activities Healthy diet E Focus on daily living E1 Daily activities Meaningful daily activities E2 Social contacts Support network Relations E3 Additional Use of devices/aids ADL functioning Communication (problems) F Personal information F1 Care providers Involved health care professionals F2 Personal questions Living circumstances Legal guardian General concerns about health Legal status (according to Dutch law) F3 (Family) History Family history Level of ID Etiology of ID G Medication Actual medication use Medication review Attention for psychotropic medication Self-medication H Physical/additional examination H1 Physical examination General impression Consciousness Otoscopy Hearing (wispercard) Length/weight/BMI Pulse/bloodpressure Auscultation heart Locomotion observation Communication observation Dysmorfology H2 Blood and urine test Only on indication H3 Referrals Referral for vision test, hearing test, clinical genetisist (only on indication) I Additional DNR Treatment limitations Restraints (e.g. door locked) View Large Flow of inclusion of ‘general’ items Figure 2 shows the flow of inclusion of the ‘general’ items in all three rounds. Originally, 82 ‘general’ items were presented to the participants in the first round. The participants reached consensus (>75% agreement) on 44 ‘general’ items. An overview of these items can be found in the Supplementary material. Six items were rejected (<50% agreement) in this round (cryptorchidism, male genitals, urinary tract general information, posture, hobbies, reason for medication). Full agreement (100%) in both expert groups was reached during the first round on nine items: vision, hearing, gastro-oesophageal reflux disease (GERD), defecation (problems), behaviour (changes), smoking, alcohol and drug (use) and sports (activities). The GP experts fully agreed (100%) on dental care and weight loss/gain. Figure 2. View largeDownload slide Flow of inclusion of ‘general’ items throughout Delphi rounds one, two and three for the development of a health assessment instrument for people with ID (2016). *See Supplementary Table S1, **See Supplementary Table S2, ***See Table 2. Figure 2. View largeDownload slide Flow of inclusion of ‘general’ items throughout Delphi rounds one, two and three for the development of a health assessment instrument for people with ID (2016). *See Supplementary Table S1, **See Supplementary Table S2, ***See Table 2. In the second round, the remaining 32 ‘general’ items with agreement of 50–75% and 10 new ‘general’ items (Table 2) were (re)presented to both expert groups. Supplementary Table S2 shows the changes in agreement (%) between the first and second rounds. The items with an asterisk (*) were presented in the second round with additional information from the first round. Table 2. New health assessment items proposed by GPs and ID physicians in the Delphi study (2016) Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Light grey indicates 100% in one expert group. Middle grey indicates >75% GP expert group: inclusion. Dark grey indicates 100% in both expert groups. aNew items presented in round 2 for the first time. bNew items in 2nd represented in 3rd round with additional qualitative information. View Large Table 2. New health assessment items proposed by GPs and ID physicians in the Delphi study (2016) Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Subject GP 2nd round (%) GP 3rd round (%) ID physician2nd round (%) ID physician 3rd round (%) Decision Not to be reanimateda 100 – 89 – in Treatment limitationsa 100 – 78 – in Restraints (e.g. door locked)a 85 – 61 – in Meaningful daily activitiesa 80 – 89 – in Spasticitya 40 – 72 – out Skin diseases/problemsa 40 – 78 – out Legal statusa 90 – 78 – in STDsb 65 100 72 100 in Aspiration pneumoniasb 65 95 94 100 in Congenital heart diseaseb 50 75 61 90 in Light grey indicates 100% in one expert group. Middle grey indicates >75% GP expert group: inclusion. Dark grey indicates 100% in both expert groups. aNew items presented in round 2 for the first time. bNew items in 2nd represented in 3rd round with additional qualitative information. View Large Both expert groups reached full agreement (100%) on psychiatric problems. The items work (paid or unpaid) and day care were replaced by a new item, ‘meaningful daily activities’, on which agreement had been reached. Table 2 shows the new ‘general’ items proposed in the first round. All 10 new ‘general’ items were suggested by ID physicians. Of these, skin diseases and sexually transmitted diseases (STDs) were also mentioned by the GP experts. Both expert groups reached full agreement on STDs. The GP experts reached full agreement on the items ‘Do not resuscitate’ (DNR) and ‘Treatment limitations’. In total, for another 20 items (Table 2 and Supplementary Table S2), the agreement among the GPs was above 75%. Inclusion of items concerning physical and additional examinations Both expert groups agreed (95%) that physical and additional examinations should be part of the health assessment instrument. The information provided in the first round on the items concerning physical and additional examinations suggested a rearrangement of those items into new ones. These rearrangements were based on existing guidelines on physical examination in both fields (primary care and ID medicine). Some of the original first round items, i.e. specific blood tests (e.g. haemoglobin/mean corpuscular volume [Hb/MCV], glucose, thyroid-stimulating hormone [TSH] screening) and urine samples, were omitted. The experts agreed that blood and/or urine tests should only be undertaken when indicated by the results of the questionnaire. New items that came forward were general impression, consciousness, hearing (with the help of the whispered speech picture chart), dysmorphology, observation of communication and locomotion. Finally, more than 75% agreement was achieved on the following items: general impression, consciousness, length/weight/body mass index (BMI), blood pressure, pulse, auscultation of the heart, otoscopy, hearing (with the help of the whispered speech picture chart) (27), dysmorphology, observation of communication and locomotion. Other investigations/examinations (referrals to a clinical geneticist, referrals for vision or hearing tests) should only take place when indicated by the results of the questionnaire (see section H, Table 1). Opinions concerning the application and implementation of the primary care health assessment instrument In the third round, it became very clear that the experts (GPs and ID physicians) would like the patient and carer to complete the questionnaire (partly) at home. The experts also agreed on the fact that the outcome of the questionnaire should be easy to introduce in their electronic medical system. The GPs could use some support. The practice nurse was mentioned in this context, but not without training on the subject. Ninety-five per cent of the experts were in favour of a final action plan as a follow-up to the health assessment. Conclusions Summary In this study, we aimed to generate agreement concerning a list of items that should be part of a primary care health assessment instrument for people with ID. Our research group selected 82 ‘general’ items and 14 items on physical and additional examinations based on a review of the literature. The experts had the opportunity to propose new items and provide additional qualitative suggestions. They suggested 10 new items and proposed a rearrangement of the items on physical and additional examinations. After three rounds, agreement was reached on 64 ‘general’ items and on 18 items concerning physical and additional examinations. The overall agreement among the GP experts and ID physicians was good. Strengths and limitations We conducted this Delphi study according to the key methodological criteria proposed by Diamond et al.’s review (25). For example, before we started, we defined the criteria for agreement (>75%) on the uptake of an item, specified the planned number of rounds and established criteria for dropping items in each round. The participation rate was high, above 88%, in all three rounds (Fig. 2). All experts had experience of and an affinity with medical care for people with ID. This is both a strength and weakness of the study. This study represents the opinions of GP experts and ID physicians with experience in this field. GPs with less experience may not be convinced by these results. The Netherlands is the only country in the world with medical specialists in ID: ID physicians. Their participation reinforced the quality of the procedure of reaching consensus as they suggested all new items and provided more additional comments. For only five items (osteoporosis, involvement of medical specialists, skin problems, chest pain and arthralgia), we found remarkable differences among GP experts and ID physicians (Table 2, Supplementary Tables S1 and S2). These differences may reflect the different prevalence in primary care versus specialist care (28,29). The item set presented to the participants was selected by two researchers (a GP and an ID physician) and discussed by the whole research group. Although the participants were able to come forward with new items, it is possible that a different selection of the items originally presented would have resulted in a different final list. Comparison with existing literature In the scientific literature, the development of four other primary care health assessment instruments for people with ID has been described. Two of these (the ‘Preventive care checklist for adults with developmental disabilities’ and the ‘OK health check’) were developed through a (Delphi) consensus procedure (30,31). As in our study, the participants in those studies were experts on medical care for people with ID. Our experts agreed on the inclusion of falls and mobility. These two items are not included in the ‘Preventive care checklist for adults with developmental disabilities’ (31). In the latter, osteoporosis and thyroid diseases are included, whereas they were excluded from our final list, as well as from the ‘OK health check’. Items on sexual health, falls and GERD are not part of the ‘OK health check’ (30). Two other health assessment instruments (the ‘Health toolkit’ and ‘Let’s get healthy together’) were constructed through focus group discussions (32,33). The participants in the focus group discussions were people with ID and/or their caregivers. As expected, the set of medical items included (section A, Table 1) in our study is more detailed than the set that proposed in the focus group studies (20). In our study, the experts mentioned that they expected that practice nurses could give support. This is confirmed by a study that showed that health assessments for people with ID provided by practice nurses produced health care improvements and were more optimal than standard care, being both cheaper and more effective (7). The European assessment system called the EASY-Care standard is a comprehensive instrument that can be used in primary and community settings for the geriatric population (34). Although the domains found in our study, e.g. finances, differ with the EASY-Care, there are also similarities (seeing-hearing-communication, mobility, prevention, mental health and well-being). An eye-catching difference between the consensus items found in our study and ‘subjects/items’ questioned in the EASY-Care standard is the domain of high-prevalence diseases. GPs have reported a lack of knowledge about specific diseases in patients with ID (35). Implications for future research and practice Items that should be part of a health assessment instrument have been selected in this study. The results of this study imply the need for a newly developed health assessment instrument. This is the first step. The experts (GPs and ID physicians) prefer that patients and carers complete the health assessment questionnaire, at least in part, at home. It is not sufficient to simply pass on the items on which consensus was reached to the patient and carer and ask them to ‘Tell me more about…(vision, ..... constipation,etc.). The next step will be to formulate clearly formulated questions that encompass these items. This implies that each question should be understood in a consistent way and should provide unambiguous answers that inform the GP additionally regarding the specific item. Malpass et al. showed that lack of attention to this aspect leads to ambiguous questions and consequently to questionable validity (36). Another important step will be to further refine this health assessment instrument made after GPs have used the tool in daily practice. This will be the subject of further study. Supplementary material Supplementary material is available at Family Practice online. Declaration Funding: This study was funded by the consortium ‘Stronger on your own feet’, in which the Radboud University Medical Centre collaborates with the following care organizations for people with ID: Pluryn, Siza, Dichterbij, Oro, de Driestroom, ‘s Heeren Loo, Philadelphia, de Twentse zorg centra and Koraalgroep. The funders had no influence on the study design, data collection or writing of the manuscript. Ethical approval: According to Dutch legislation, approval from an ethics committee was not required. Conflict interest: The authors have no conflict of interest to declare. References 1. Emerson E , Hatton C , Robertson J , Baines S . Perceptions of neighbourhood quality, social and civic participation and the self rated health of British adults with intellectual disability: cross sectional study . BMC Public Health 2014 ; 14 : 1252 . Google Scholar CrossRef Search ADS PubMed 2. WHO . 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Family PracticeOxford University Press

Published: Feb 17, 2018

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