Out-of-hours primary care for people with intellectual disabilities: interviews in general practice.

BACKGROUND: Out-of-hours primary care for people with intellectual disabilities (ID) involves different groups of health care professionals, who are often not familiar to one another nor to the specific health care needs of this vulnerable population. It is not known to what extend these specific health care needs or organizational factors influence the delivery of out-of-hours primary care for people with ID. OBJECTIVE: The objective of this study is to explore the experiences of health care professionals regarding the medical content and the organizational context of out-of-hours primary care for people with ID. METHODS: Semi-structured interviews were conducted with daily care professionals, triage nurses and general practitioners (GPs) involved in out-of-hours primary care for people with ID in the Netherlands. Interviews were thematically analysed for medical content and organizational context. RESULTS: The analysis resulted in four interconnected themes: (i) uncertainties in the triage assessment of ID patients; (ii) confusion about inter-professional responsibilities; (iii) impact on routines and workflow concerning ID patients and (iv) constraints in the decision-making process. All issues raised were related to the organizational context. CONCLUSIONS: Health care professionals involved in out-of-hours primary care for people with ID indicate that the quality of this care is more influenced by the organizational context than by the medical content. We recommend out-of-hours GP services and care provider services for people with ID to set standards for roles and responsibilities in order to facilitate health care professionals in delivering accessible and high-quality care to this vulnerable population.

"Constructing a health assessment questionnaire for people with intellectual disabilities: A cognitive interview study".

INTRODUCTION: Health assessment instruments can help to raise awareness among general practitioners of specific health problems in people with intellectual disabilities (PID). The present authors developed a health assessment questionnaire using the cognitive interview technique (CI) to improve the comprehensibility. The utility of this approach to questionnaire development involving PID is assessed. METHOD: A qualitative approach using the CI was employed. The study included PID and their caregivers. The present authors interviewed 14 participants in 5 subsequent rounds. After each round, the questionnaire was adjusted until saturation was reached. RESULTS: Three hundred and sixty three identified problems led to 316 changes to the questionnaire. Most problems (102) concerned the comprehension of the question, followed by problems in the "missing answer categories" and "inaccurate instruction" section. CONCLUSION: The comprehensible health assessment questionnaire can help PID to take an active role in communication with their GP. The use of CI helped to improve the questionnaire. CI is a usable and valuable procedure for PID.

The convergent validity of a Dutch Screening tool for Dysphagia (Signaleringslijst Verslikken) for people with severe or profound intellectual and multiple disabilities.

BACKGROUND: Dysphagia is potentially life-threatening and highly prevalent in people with severe/profound intellectual and multiple disabilities (SPIMD). The "Signaleringslijst Verslikken" (SV) is a frequently used Dutch screening tool to detect dysphagia. The aim was to examine the convergent validity of the SV for people with SPIMD. METHOD: Direct support staff completed the SV, with speech and language therapists scoring a validated tool, the Dysphagia Disorders Survey (DDS), for 41 persons with SPIMD, aged ≥50 years. The results were compared for agreement using the McNemar's Test. RESULTS: The proportion of agreement was 0.59 (95% CI 0.43-0.72). The SV did not detect dysphagia in 17 participants (44%) who were assessed as having dysphagia according to the DDS. The difference in proportion of detection of dysphagia between the two methods was significant (p < 0.0001). CONCLUSIONS: The results suggest that the convergent validity of the SV is insufficient: the SV is not sensitive for detecting dysphagia in people with SPIMD.

A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co-researchers with intellectual disabilities.

BACKGROUND: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. METHOD: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. RESULTS: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. CONCLUSIONS: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care.

BACKGROUND: Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population. METHOD: Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20-65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability. RESULTS: Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively). CONCLUSIONS: Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).

BACKGROUND: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. METHOD: We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. RESULTS: The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. CONCLUSIONS: PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.

An exploration of the participation of people with intellectual disabilities in research-a structured interview survey.

BACKGROUND: Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results. METHOD: Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results. RESULTS: Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information. CONCLUSIONS: Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as "empowerment," can be supported to facilitate their involvement in research.

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

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.

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study.

OBJECTIVE: Accurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice. METHODS: We conducted a two-round modified Delphi study with Dutch GPs (n=22), support workers (n=18) and ID physicians (n=20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility. RESULTS: Agreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands. CONCLUSION AND PRACTICE IMPLICATIONS: This study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group.

GPs' opinions of health assessment instruments for people with intellectual disabilities: a qualitative study.

BACKGROUND: GPs provide health care to people with intellectual disabilities (ID). People with ID find it difficult to express themselves concerning health-related matters. Applying health assessments is an effective method to reveal health needs, and can play a role in prevention and health promotion. AIM: The aim of this qualitative study was to explore GPs' considerations about applying a health assessment for people with ID. DESIGN AND SETTING: This focus group study was conducted among a selection of Dutch GPs. METHOD: An interview guide was developed. All discussions were audiorecorded and transcribed. Analysis was performed using the framework analysis approach. Two researchers independently applied open coding and identified a thematic framework. This framework and the summaries of views per theme were discussed in the research team. RESULTS: After four focus groups, with 23 GPs, saturation was reached. Three main themes evolved: health assessments in relation to GPs' responsibility; the usefulness and necessity of health assessments; and barriers to using health assessments on people with ID. A health assessment instrument for people with ID can help GPs to focus on certain issues that are not so common in the general population. GPs are motivated to use such a tool if it is scientifically tested, and results in significant health gains. However, GPs identify barriers at the level of GP, patient, and organisation. CONCLUSION: Most GPs in the focus groups consider providing medical care to people with ID their responsibility and indicate that a health assessment instrument could be a valuable tool. In order to deliver good care, they need education and support. Many barriers need to be overcome before a health assessment instrument can be implemented.

Health information exchange for patients with intellectual disabilities: a general practice perspective.

BACKGROUND: Inadequate health information exchange (HIE) between patients with intellectual disabilities (ID), their carers, and GPs may lead to ineffective treatment and poor treatment compliance. Factors influencing HIE are largely unexplored in previous research. AIM: To provide insight into the perceived HIE facilitators of GPs and general practice assistants, and the barriers in GP consultations for patients with ID. DESIGN AND SETTING: An interview-based study with GPs (n = 19) and general practice assistants (n = 11) in the Netherlands. METHOD: Semi-structured interviews were conducted on topics relating to stages during and around GP consultation. Transcripts were coded and analysed using framework analysis. RESULTS: The main themes were impaired medical history taking and clinical decision making, and fragile patient follow-up. Factors negatively influencing HIE related to patient communication skills and professional carers' actions in preparing the consultation and in collecting, recording, and sharing information. HIE barriers resulted in risk of delay in diagnosis and treatment, misdiagnosis, unnecessary tests, and ineffective treatment regimens. HIE facilitators were described in terms of GP adjustments in communication, planning of consultations, and efforts to compensate for fragile follow-up situations. CONCLUSION: Inadequate HIE should be seen as a chain of events leading to less effective consultations, substandard treatment, and insufficient patient follow-up. The results indicate a mismatch between GPs' expectations about professional carers' competencies, responsibilities, and roles in HIE and the setting in which professional carers operate. Further research should focus on how daily GP practice can be attuned to the practicalities of HIE with patients with ID and their professional carers.

After-hours primary care for people with intellectual disabilities in The Netherlands-Current arrangements and challenges.

BACKGROUND: Little is known about the organisation of after-hours primary care for people with intellectual disabilities (ID), and mainstream care is not self-evidently accessible or fit for this group. A first step towards improvement is a greater understanding of current after-hours primary ID care. AIMS: This study explores the organisation of and experiences with after-hours primary care provided for people with ID in The Netherlands. METHODS AND PROCEDURES: A telephone survey amongst 68 care provider services including questions on organisational characteristics, problem areas, facilitators, and inhibitors. OUTCOMES AND RESULTS: A multitude of different after-hours primary care arrangements were found. Primary care physicians (PCPs) were involved in almost all care provider services, often in alliance with PCP cooperatives. Specialised ID physicians had differing roles as gatekeeper, primary caregiver, or consultant. Most problems during the after-hours arose regarding daily care professionals' competences. Facilitators and inhibitors of after-hours primary care were themed around complexity of, and need for, specialised care, multidisciplinary team of professionals, communication and information, and prerequisites at organisational level. CONCLUSIONS AND IMPLICATIONS: Evidence on specific after-hours health needs of people with ID is needed to strengthen collaboration between specialist ID care services and mainstream healthcare services to adequately provide care.

Experiences of patients with intellectual disabilities and carers in GP health information exchanges: a qualitative study.

BACKGROUND: Accurate health information exchange (HIE) is pivotal for good quality of care. However, patients with intellectual disabilities (ID) face challenges in processing and exchanging health information around GP consultations. Knowledge of HIE barriers and facilitators, including the roles of carers, may help to improve GP care for people with ID. OBJECTIVE: To gain more insight into HIE barriers and facilitators for ID patients in GP care. METHODS: A qualitative study exploring GP consultation experiences of people with ID (n = 35), professional carers (n = 20) and relatives (n = 15). Transcripts from interviews and focus groups were analyzed using a framework analysis approach. RESULTS: Analyses resulted in four themes: (i) Recognizing patient health needs; (ii) Impaired doctor-patient communication; (iii) Carers' mediating roles during consultations; and (iv) Patients' autonomy and self-determination. Barriers related to communication skills, lack of time, continuity of carers and physicians, information alignment between relative or professional carer and the GP, and information transfer and recording within the patient network. Facilitating factors related mainly to carer interventions, personal connections with patients and GP communication with patients and carers outside the consultation. CONCLUSION: There is considerable HIE potential in patients themselves, as well as in their network, although many barriers have to be overcome to profit from this. GP practices are recommended to adjust consultations and communication practices and to facilitate deployment of the patient's network, while still considering patient autonomy.

Active involvement of people with intellectual disabilities in health research - A structured literature review.

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.

Training on intellectual disability in health sciences: the European perspective.

BACKGROUND: Intellectual disability (ID) has consequences at all stages of life, requires high service provision and leads to high health and societal costs. However, ID is largely disregarded as a health issue by national and international organisations, as are training in ID and in the health aspects of ID at every level of the education system. SPECIFIC AIM: This paper aims to (1) update the current information about availability of training and education in ID and related health issues in Europe with a particular focus in mental health; and (2) to identify opportunities arising from the initial process of educational harmonization in Europe to include ID contents in health sciences curricula and professional training. METHOD: We carried out a systematic search of scientific databases and websites, as well as policy and research reports from the European Commission, European Council and WHO. Furthermore, we contacted key international organisations related to health education and/or ID in Europe, as well as other regional institutions. RESULTS: ID modules and contents are minimal in the revised health sciences curricula and publications on ID training in Europe are equally scarce. European countries report few undergraduate and graduate training modules in ID, even in key specialties such as paediatrics. Within the health sector, ID programmes focus mainly on psychiatry and psychology. CONCLUSION: The poor availability of ID training in health sciences is a matter of concern. However, the current European policy on training provides an opportunity to promote ID in the curricula of programmes at all levels. This strategy should address all professionals working in ID and it should increase the focus on ID relative to other developmental disorders at all stages of life.

Health inequity in people with intellectual disabilities: from evidence to action applying an appreciative inquiry approach.

BACKGROUND: The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. MATERIALS AND METHODS: The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. RESULTS: A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how and visibility and a pervasive theme, that of person-centered support. CONCLUSION: Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required.

[Nothing about us without us: health care research with people with intellectual disabilities]. / Niet zonder ons: onderzoek mét mensen met verstandelijke beperkingen.

While the patients' perspective has been included in health care research, the participation of people with intellectual disabilities in research on their health has been limited, and considered to be difficult. However, they are vulnerable and experience more health problems than the general population. Legal issues regarding inclusion of people with intellectual disabilities are clarified in international and Dutch law, and should be respected. Aside from the legally responsible persons, various other stakeholders also play a role, which should be realized and considered when developing research plans. Inclusion of people with intellectual disabilities themselves in research, not only as subjects but also as advisors, researchers and decision-makers could make research more relevant and attractive for themselves, for health practice and for the research community.

Topics, methods and challenges in health promotion for people with intellectual disabilities: a structured review of literature.

People with intellectual disabilities (ID) experience substantial health inequities compared, with the general population. Many secondary conditions and lifestyle related health problems could be, prevented with adequate health promotion. The aim of this structured review is to provide insight into, the main characteristics of published health promotion intervention studies for people with ID and, in, doing so, to identify best practice and knowledge gaps. Relevant studies were identified through a, structured literature search of multiple electronic databases (PubMed, CINHAS, Scopus, PsychINFO), the search strategy covered health promotion and intellectual disabilities for available papers, published between February 2002 and 2012. In total, 25 studies were included and analyzed. Overall, studies were diverse and explored a variety of health issues. Papers included a variety of participants (in relation to level of disability) and intervention approaches. With regard to quality, many studies, failed to report how they recruited their participants, and there were substantial challenges identified, by authors in relation to recruitment, implementation of interventions, and the selection of outcome, measures used as well as the usability of measures themselves. Our findings suggest that this field, experiences methodological weaknesses and inconsistencies that make it difficult to compare and, contrast results. Theoretically driven studies that take into account the views and expectations of, participants themselves are needed, as is research that investigates the reliability and validity of, outcome measures for the ID population. Collaboration with mainstream health promotion research is, critical.

Prospective study on risk factors for falling in elderly persons with mild to moderate intellectual disabilities.

Elderly persons with intellectual disabilities (ID) are at increased risk for falls and fall-related injuries. Although there has been extensive research on risk factors for falling in the general elderly population, research on this topic in persons with ID is rather sparse. This is the first study to prospective investigate risk factors for falling among elderly persons with mild to moderate ID. Seventy-eight ambulatory persons with mild to moderate ID (mean age 62.8 ± 7.6 years; 44 (56%) men; 34 (44%) mild ID) participated in this study. This longitudinal cohort study involved extensive baseline assessments, followed by a one-year follow-up on fall incidents. Falls occurred in 46% of the participants and the fall rate was 1.00 falls per person per year. The most important risk factors for falling in elderly persons with mild to moderate ID were (mild) severity of ID, (high) physical activity, (good) visuo-motor capacity, (good) attentional focus and (high) hyperactivity-impulsiveness, which together explained 56% of the fall risk. This pattern of risk factors identified suggests a complex interplay of personal and environmental factors in the aetiology of falls in elderly persons with ID. We recommend further research on the development of multifactorial screening procedures and individually tailored interventions to prevent falling in persons with ID.