Background Viral respiratory infections are highly contagious and associated with an increased risk of serious adverse health outcomes in vulnerable populations, including people with intellectual disabilities. However, little is known about the overall disease burden of viral respiratory infections among people with intellectual disabilities. Aim This scoping review aims to provide an overview of the existing literature on the disease burden of viral respiratory infections among people with intellectual disabilities. Methods Studies published between 1999 and 10 July 2024, were identified through PubMed, MEDLINE, Embase and Web of Science, and included if focused on adults with intellectual disabilities, viral respiratory infections and relevant health outcomes such as infection rate, mortality, hospitalisation, functional impairments or quality of life. Results 58 articles were included, of which the majority focused on COVID-19 (42/58) or influenza (13/58). Studies varied in their methodology and outcome measures. Evidence on COVID-19 and influenza showed that people with intellectual disabilities experience a higher disease burden from these infections compared with the general population. Particularly disproportionate effects were evident among people with Down syndrome, who had higher mortality estimates and an increased burden of comorbidities associated with severe disease and death. Conclusion Although available evidence appeared limited and diverse, this scoping review shows a higher disease burden in people with intellectual disabilities, in particular for COVID-19 and influenza-type viruses, which can be indicative of the impact of other viral respiratory infections as well. This highlights the importance of measures to prevent and control the spread of respiratory pathogens among this group.

BACKGROUND:General practitioners (GPs) are increasingly confronted with people with both mild intellectual disability (MID) and mental health (MH) problems. Little is known about the type of MH problems for which people with MID visit their GP and the care provided. OBJECTIVES:To identify the type and prevalence of MH disorders and MH-related complaints in people with MID in primary care and care provided, compared to people without ID. METHODS:By linking the Netherlands Institute for Health Services Research's primary care databases, comprising electronic health records, with Statistic Netherlands' social services and chronic care databases, we identified 11,887 people with MID. In this four-year retrospective study, MH-related International Classification of Primary Care (ICPC) codes and care characteristics were compared between people with MID and without ID. RESULTS:Of the people with MID, 48.8% had MH problems recorded vs. 30.4% of the people without ID, with significant differences in substance abuse, suicide attempts, and psychosis. Of the MID group, 80.3% were not registered by their GP with the ICPC code mental retardation. GPs provided more care to people with MID and MH problems than people without ID but with MH-problems regarding consultations (median 6.4 vs. 4.0 per year) and variety of prescribed medications (median 2.7 vs. 2.0 per year). CONCLUSION:In primary care, the prevalence of MH problems and care provided is high in people with MID. To improve primary mental healthcare for this group, it is essential to increase GPs' awareness and knowledge on the combination of MID and MH.

People with intellectual disabilities experience overall poorer health and healthcare access than the general population. It is largely unknown how this applies to asthma and chronic obstructive pulmonary disease (COPD) management by general practitioners (GPs). In a 10-year retrospective matched cohort study, n = 34,429, we examined year prevalence of asthma and COPD in adult patients with and without intellectual disabilities and potential differences in the delivery of asthma and COPD disease management activities in Dutch general practices (2010–2019). We collected information on patient characteristics, comorbidity, consultation patterns, use and outcomes of asthma/COPD control questionnaires, spirometry measurement, pulmonology referrals, and prescribed medication. Asthma patients with intellectual disabilities suffered more frequently from obesity (53.2% vs. 39.5% without intellectual disabilities), and both asthma and COPD patients with intellectual disabilities were more frequently current smokers (45.2% vs. 22.1% without intellectual disabilities, and 76.6% vs. 51.4% without intellectual disabilities, respectively). Also, a statistically significant larger number of asthma patients with intellectual disabilities were prescribed antibiotics (69.9% vs. 54.5%). COPD patients with intellectual disabilities, compared with matched controls without intellectual disabilities, received significantly more often either no COPD-related practice consultation at all (respectively 20.8% vs. 8.5%, p = 0.004) or a large number of practice consultations (>31 consultations, respectively 16.7% vs. 5.3%, p = 0.004). For asthma, there was no statistical difference between patients with or without intellectual disabilities regarding the number and type of consultations. The asthma year point prevalence in patients with intellectual disabilities was, from 2014 onward, significantly higher, and in 2019 was 8.7% vs. 6.0% for people without intellectual disabilities. For COPD, it was comparable in both groups. Both asthma and COPD patients with intellectual disabilities appeared considerably younger in age than patients without intellectual disabilities. Our findings warrant further research into the causes of the differences found for asthma and COPD and whether they also infer differences in the quality or the effectiveness of GP disease management, especially for young adults with intellectual disabilities.

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.

Abstract People with mild ID suffer more mental health disorders (MHD) than people without ID. Practitioners working in mental health services (MHS) indicate limited knowledge and experience to provide the care needed. Besides diagnosing MHD, identification of the ID itself is a challenge and not all people with a ID are recorded in the MHS as such. These factors contribute to insufficient care and can result in chronic, more difficult to treat MHD. For this study, all adult users of Dutch MHS between 2015 and 2017 were enrolled in MHS databases of Statistics Netherlands. Presence of mild ID was established by linking MHS data with social services and chronic care databases. Characteristics of new cases of MHC were analyzed and compared between patients with and without mild ID. Linking databases identified 11,374 MHC patients with mild ID, and 525,162 patients without ID. A substantial proportion of patients with mild ID did not have this characteristic noted in their MHS records (60.6%). Preliminary results showed people with mild ID were younger, were more often man, had different diagnostic profiles, required more crisis interventions, and more psychiatric hospital admissions compared to people without ID. In addition, people with a mild ID and no ID record in MHS received less treatment compared to both people with mild ID and a ID record, and people with no ID. According to these findings, the prevalence of MHD and provided care between people with and without a mild ID, in MHS deviated. The Mild ID is potentially under recognized among MHS patients. The findings are a first step towards improving mental healthcare for patients with ID.

BACKGROUND:GPs are increasingly confronted with patients with both intellectual disabilities (ID) and mental health disorders (MHD). Currently, the care provided to these patients is found to be insufficient, putting them at risk of developing more severe MHD. Improving the quality of GP care will improve the whole of mental health care for this patient group. Therefore, an overview of the content and quality of care provided to them by the GP may be helpful. AIM:To provide an up-to-date literature overview of the care provided by GPs to patients with ID and MHD, identify knowledge gaps, and inform research, practice, and policy about opportunities to improve care. DESIGN AND SETTING:Scoping review. METHOD:PubMed, PsycINFO, EMBASE, and grey literature were searched for publications concerning primary care and patients with ID and MHD. Selected publications were analysed qualitatively. RESULTS:One hundred publications met the inclusion criteria. Five overarching themes were identified: GP roles, knowledge and experience, caregiver roles, collaboration, and a standardised approach. The results show GPs' vital, diverse, and demanding roles in caring for patients with both ID and MHD. GPs experience problems in fulfilling their roles, and gaps are identified regarding effective GP training programmes, applicable guidelines and tools, optimal collaborative mental health care, and corresponding payment models. CONCLUSION:The improvement required in the current quality of GP care to patients with ID and MHD can be achieved by bridging the identified gaps and initiating close collaborations between care professionals, policymakers, and organisational managers.

Aims: To conduct an epidemiological analysis of patterns observed in diabetes care provided to individuals with and without intellectual disabilities (ID) in primary care settings. Methods: An ID-cohort (N = 21,203) was compared with a control group of similar age and sex from the general Dutch population (N = 267,628). Distinctive data for diabetes (both type 1 and type 2) and related complications were retrieved from national databases. Results: The prevalence of diabetes was higher in people with ID than in the general population (9.9% versus 6.6%). Largest differences were seen in younger age groups. Women with ID had diabetes more often than men with ID. Complications were less common in people with ID than in the general population (IR 58.6 vs. 70.4). In particular, cardiological complications were noted less, while surgical interventions and hospitalization occurred more often. Conclusions: Although diabetes was 1.5 times more prevalent in people with ID than in other people, related complications were less common, followed different patterns and were more severe than in the general population. Future research is needed to understand of the underlying causal mechanisms and to lower the risk of severe diabetic complications among people with ID. ? 2020 The Author(s). Published by Elsevier Ltd on behalf of Primary Care Diabetes Europe. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

Ongeveer 1% van de Nederlanders heeft een verstandelijke beperking en vrijwel iedere huisarts ziet in de praktijk een aantal patiënten uit deze kwetsbare groep. De communicatie met deze patiënten moet worden aangepast aan het ontwikkelingsniveau, dat per patiënt kan verschillen. Ook kennis van het zorgnetwerk rondom de patiënt is van belang, zodat dit kan worden ingezet bij heteroanamnese en begeleiding. En bij de diagnostiek en behandeling helpt het op de hoogte te zijn van veelvoorkomende medische problematiek bij deze groep. Voor de bijkomende medische, psychische en sociale problemen die patiënten met een verstandelijke beperking vaak hebben, kan worden verwezen naar een arts voor verstandelijk gehandicapten (AVG).

BACKGROUND People with intellectual disabilities often have low health literacy as a result of their limited language comprehension. The aim of this study was to explore the difficulties Dutch people with intellectual disabilities experience during the process of considering and seeking medical help from their GP. The study was intended as input for an online intervention supporting health literacy. METHODS A qualitative study, in which 12 semi-structured interviews were conducted with people with mild intellectual disabilities and 4 with relatives of people with mild intellectual disabilities. The interviews were analysed following the principles of thematic analysis. RESULTS Difficulties were experienced in the following activities: assessing and proactively reacting to health complaints, processing health information, communicating with a GP and retaining information from the consultation. Support workers and relatives play an important role in all these activities. CONCLUSIONS To increase the capacity of people with intellectual disabilities to manage their health and seek care from their GP, it is important to support them in the activities they find difficult. Recommendations resulting from the study have been incorporated in an online intervention.

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.

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.To gain more insight into HIE barriers and facilitators for ID patients in GP care.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.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.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.

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.

Mensen met een verstandelijke beperking (VB) hebben vergeleken met de algemene populatie een slechtere gezondheid en meer communicatieproblemen met hulpverleners. De informatieverzameling en -overdracht bij deze patiëntengroep zijn voor huisartsen vaak lastig en vereisen goede samenwerking en afstemming met personen uit het steunnetwerk van de patiënt.