Care needs of chronically ill patients with intellectual disabilities in Dutch general practice: patients' and providers' perspectives.

BACKGROUND: To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease (COPD)), it is imperative that care is of high quality and suitable to patients' needs. Patients with intellectual disabilities (ID) differ from the average patient population in general practice because of their limitations in adaptive behaviour and intellectual functioning, and concomitant difficulties recognising and reacting to disease symptoms, proactively searching health information, and independently managing diseases effectively. Because of these differences, information on their care needs is essential for suitable chronic disease management (CDM). Inadequate recognition of the care needs of this vulnerable population may hamper the harmonisation of evidence-based and person-centred care, compounded by issues such as stigma, misconceptions, and diagnostic overshadowing. This study therefore aimed to explore the needs of patients with ID from perspectives of both patients and of healthcare providers (HCPs) in the context of CDM in general practice. METHODS: This qualitative study recruited patients with ID for face-to-face individual interviews and HCPs for focus groups. With the Chronic Care Model as the underlying framework, semi-structured interviews and focus-group guides were defined to explore patients' care needs and HCPs' perspectives. All interviews and focus groups were audio-recorded and transcribed verbatim. Using Atlas.ti software, data were analysed using reflexive thematic analysis. RESULTS: Between June and September 2022, 14 patients with ID and cardiovascular disease, diabetes mellitus type 2, and/or asthma/COPD were interviewed; and 32 general practitioners and practice nurses participated in seven focus groups. We identified six care needs underpinning suitable CDM: trusting relationship between patient and HCP; clear expectations about the CDM process; support in disease management; directive decision-making; support in healthy lifestyle; accessible medical information. CONCLUSIONS: This vulnerable patient population has complex care needs that must be acknowledged for suitable CDM. Although HCPs largely recognise these needs, organisational factors and lack of training or experience with patients with ID hamper HCPs' ability to fully adjust care provision to these needs. Access to, and knowledge of, easy-language information on chronic diseases and communication guidelines could aid HCPs to facilitate patients in managing their diseases more adequately.

Primary mental healthcare for adults with mild intellectual disabilities: care professionals' perspectives.

BACKGROUND: General practitioners (GPs) and mental health nurse practitioners (MHNPs) often feel ill equipped to provide mental health (MH) care to people with mild intellectual disabilities (MID). This is worrying, as insufficient primary MH care may lead to more severe or chronic problems. To improve primary MH care for this patient group, account must be taken of the experiences and needs of GPs and MHNPs providing the care. AIM: To explore GPs' and MHNPs' experiences, needs, and recommendations for improvement regarding primary MH care for adults with MID. DESIGN & SETTING: Focus group study among GPs and MHNPs. METHOD: Focus groups, guided by topics based on an interview study with adults with MID receiving primary MH care. Transcripts were analysed by thematic analysis. RESULTS: Four focus groups, with 19 GPs and 9 MHNPs, revealed four themes describing the needs and perceived complexity involved in providing MH care to patients with both MID and MH problems: 1] GPs' and MHNPs' struggles with adapting to challenging patient characteristics; 2] importance and difficulties of establishing a good doctor-patient relationship; 3] facilitating and hampering roles of the patient's network; 4] GPs' and MHNPs' challenges to provide care in the healthcare chain. CONCLUSION: GPs and MHNPs often experience providing care and support to this patient group as burdensome. It is important to consider the MID throughout the MH trajectory, to invest in a strong doctor-patient relationship, and to establish a stable, sustainable network and coordinated collaborative care around the patient.

Primary mental healthcare for adults with mild intellectual disabilities: Patients' perspectives.

BACKGROUND: People with mild intellectual disabilities (MID) experience more mental health (MH) problems than the general population but often do not receive appropriate primary MH care. Primary MH care is essential in integrative MH care and, therefore, demands high quality. To improve primary MH care for this patient group, account must be taken of the experiences of people with MID. So far, their perspectives have been largely absent from primary MH care research. OBJECTIVES: To explore patients' experiences, needs, and suggestions for improvement regarding primary MH care for people with MID. METHODS: Qualitative study among adults with MID who visited their GP with MH problems in the previous 12 months. Semi-structured interviews were conducted using a guide based on Person-Centred Primary Care Measures. Transcripts were analysed thematically. RESULTS: The 11 interviews that we conducted revealed four themes. The first theme, cumulative vulnerability, describes the vulnerability - instigated by the MID and reinforced by MH problems - experienced on a GP visit. The other themes (needs regarding the GP, needs regarding the network, self-determination) arise from this vulnerability. CONCLUSION: People with both MID and MH problems are extra vulnerable in primary care but desire self-determination regarding their MH care trajectory. This requires investment in a good GP-patient relationship and the organisation of additional support to meet these patients' needs, for which collaborative care with the patient, the patient's network, and other (care) professionals is of utmost importance.

People with mild intellectual disabilities (MID) feel more vulnerable visiting their GP with mental health (MH) problems than with somatic problemsPatients with MH problems report additional needs and expectations regarding their care and support networkGPs face challenges in coordinating care for patients with both MID and MH problems.

An Accessible Web-Based Survey to Monitor the Mental Health of People With Mild Intellectual Disability or Low Literacy Skills During the COVID-19 Pandemic: Comparative Data Analysis.

BACKGROUND: The COVID-19 pandemic and related control measures affected the mental health of all populations. Particular subgroups are underrepresented in mainstream surveys because they are hard to reach, and study measurements are not adapted to their skills. These subgroups include people with lower cognitive and literacy skills, such as people with mild intellectual disability (MID), who were considered vulnerable during the COVID-19 pandemic given their low socioeconomic status, small social networks, increased risks of health problems, and difficulties understanding health-related information. OBJECTIVE: This study examines the impact of the COVID-19 pandemic on mental health among people with MID or low literacy skills compared with those predominantly represented in national surveys. METHODS: A repeated cross-sectional study of people with MID or low literacy skills and a general population sample was conducted in the Netherlands. An easy-read web-based survey was co-designed with, and tested among, people with MID or low literacy skills and conducted in 3 rounds within 1 year of the COVID-19 pandemic (T1: November to December 2020, T2: March to April 2021, and T3: September to October 2021). The survey contained questions about demographics and 6 aspects of mental health: feeling happy, feeling energized, feeling stressed, worry, feeling lonely, and sleeping problems. RESULTS: Our adapted survey and recruitment procedure enabled 1059 persons with MID or low literacy skills to participate (T1: n=412, 38.9%; T2: n=351, 33.1%; and T3: n=296, 28%). They were significantly younger, had a lower level of education, and more often than not were born outside the Netherlands compared to the general population sample (P<.001). Approximately half of them (604/1059, 57.03%) received professional care. They displayed poorer mental health scores than the general population sample. The percentages of people with MID or low literacy skills who reported more negative feelings in T1 ranged from 20.6% (85/412) reporting feeling lonely often or almost always to 57.8% (238/412) reporting feeling happy almost never or sometimes. The general population sample's percentages were 5.4% (160/2930) and 32.2% (941/2918), respectively. Although scores improved over time in both populations, the disproportional effects remained. CONCLUSIONS: General COVID-19-related restrictions for the entire Dutch population affected people with MID or low literacy skills more negatively than the general population. Our study underscores the relevance of including these subpopulations in public health research because they are often overlooked in regular health data. An accessible web-based survey particularly targeted at this population enabled us to do so, and we reached a group of respondents significantly different from regular survey participants. This survey's results provided insights into the health of people with MID or low literacy skills and gained knowledge to be used by care organizations and policy makers to reduce health disparities during a pandemic and in general.

All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: a population-based cohort study.

BACKGROUND: Although high rates of COVID-19-related deaths have been reported for people with intellectual disabilities during the first 2 years of the pandemic, it is unknown to what extent the pandemic has impacted existing mortality disparities for people with intellectual disabilities. In this study, we linked a Dutch population-based cohort that contained information about intellectual disability statuses with the national mortality registry to analyse both cause-specific and all-cause mortality in people with and without intellectual disabilities, and to make comparisons with pre-pandemic mortality patterns. METHODS: This population-based cohort study used a pre-existing cohort that included the entire Dutch adult population (everyone aged ≥18 years) on Jan 1, 2015, and identified people with presumed intellectual disabilities through data linkage. For all individuals within the cohort who died up to and including Dec 31, 2021, mortality data were obtained from the Dutch mortality register. Therefore, for each individual in the cohort, information was available about demographics (sex and date of birth), indicators of intellectual disability, if any, based on chronic care and (social) services use, and in case of death, the date and underlying cause of death. We compared the first 2 years of the COVID-19 pandemic (2020 and 2021) with the pre-pandemic period (2015-19). The primary outcomes in this study were all-cause and cause-specific mortality. We calculated rates of death and generated hazard ratios (HRs) using Cox regression analysis. FINDINGS: At the start of follow-up in 2015, 187 149 Dutch adults with indicators of intellectual disability were enrolled and 12·6 million adults from the general population were included. Mortality from COVID-19 was significantly higher in the population with intellectual disabilities than in the general population (HR 4·92, 95% CI 4·58-5·29), with a particularly large disparity at younger ages that declined with increasing age. The overall mortality disparity during the COVID-19 pandemic (HR 3·38, 95% CI 3·29-3·47) was wider than before the pandemic (3·23, 3·17-3·29). For five disease groups (neoplasms; mental, behavioural, and nervous system; circulatory system; external causes; and other natural causes) higher mortality rates were observed in the population with intellectual disabilities during the pandemic than before the pandemic, and the pre-pandemic to during the pandemic difference in mortality rates was greater in the population with intellectual disabilities than in the general population, although relative mortality risks for most other causes remained within similar ranges compared with pre-pandemic years. INTERPRETATION: The impact of the COVID-19 pandemic on people with intellectual disabilities has been greater than reflected by COVID-19-related deaths alone. Not only was the mortality risk from COVID-19 higher in people with intellectual disabilities than in the general population, but overall mortality disparities were also further exacerbated during the first 2 years of the pandemic. For disability-inclusive future pandemic preparedness this excess mortality risk for people with intellectual disabilities should be addressed. FUNDING: Dutch Ministry of Health, Welfare, and Sport and Netherlands Organization for Health Research and Development.

Mental healthcare for adults with mild intellectual disabilities: population-based database study in Dutch mental health services.

BACKGROUND: Adults with mild intellectual disability (MID) experience more mental health disorders than the general population. However, mental healthcare may be insufficiently tailored to match their needs. Detailed information is lacking regarding care provided to people with MID in mental health services. AIMS: To compare mental health disorders and care provided to patients with and without MID in Dutch mental health services, including patients with missing MID status in the service files. METHOD: In this population-based database study, we used a Statistics Netherlands mental health service database, containing health insurance claims of patients who utilised advanced mental health services in 2015-2017. Patients with MID were identified by linking this database with Statistic Netherlands' social services and long-term care databases. RESULTS: We identified 7596 patients with MID, of whom 60.6% had no intellectual disability registration in the service files. Compared with patients without intellectual disability (n = 329 864), they had different profiles of mental health disorders. They received fewer diagnostic (odds ratio 0.71, 95% CI 0.67-0.75) and treatment activities (odds ratio 0.56, 95% CI 0.53-0.59), and required more interprofessional consultations outside of the service (odds ratio 2.06, 95% CI 1.97-2.16), crisis interventions (odds ratio 2.00, 95% CI 1.90-2.10) and mental health-related hospital admissions (odds ratio 1.72, 95% CI 1.63-1.82). CONCLUSIONS: Patients with MID in mental health services have different profiles of mental health disorders and care than patients without intellectual disability. In particular, fewer diagnostics and treatments are provided, especially in those with MID with no intellectual disability registration, putting patients with MID at risk of undertreatment and poorer mental health outcomes.

Risk for Severe COVID-19 Outcomes among Persons with Intellectual Disabilities, the Netherlands.

The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.

Primary mental healthcare for adults with mild intellectual disabilities: a Dutch database study.

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.

Adults with intellectual disabilities and mental health disorders in primary care: a scoping review.

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.

How can care settings for people with intellectual disabilities embed health promotion?

BACKGROUND: People with intellectual disabilities (ID) depend on their environment to live healthily. Asset-based health promotion enhances a settings' health-promoting capacity starting with identifying protective or promotive factors that sustain health. METHOD: This inclusive mixed-methods study used group sessions to generate and rank ideas on assets supporting healthy nutrition and physical activity in Dutch intellectual disability care settings. Participants included people with moderate intellectual disabilities and family and care professionals of people with severe/profound intellectual disabilities. RESULTS: Fifty-one participants identified 185 assets in group sessions. They include the following: (i) the social network and ways "people" can support, (ii) assets in/around "places," and person-environment fit, and (iii) "preconditions": health care, prevention, budget, and policy. CONCLUSION: This inclusive research provides a user perspective on assets in the living environment supporting healthy living. This gives insight in contextual factors needed for development and sustainable embedment of health promotion in the systems of intellectual disability support settings.