Search

The global COVID-19 pandemic has had a disproportionate effect on persons in long-term care (1), particularly persons with intellectual disabilities (2). Persons with intellectual disabilities experience many limitations in adaptive [...]

Background: Primary care providers require accurate evidence on chronic disease prevalence in people with intellectual disabilities in order to apply this information into practice. This study aimed to map the broadness of literature on chronic disease prevalence in people with and without intellectual disabilities, and to explore main characteristics of these studies. Method: A scoping review of peer-reviewed literature was conducted, covering 2000 to February 2020, including literature that discussed chronic disease prevalence in people with and without intellectual disabilities, with similar data collection method for both groups. Results: Nineteen studies were included. Chronic disease prevalence varied considerably between people with and without intellectual disabilities. Studies differed in their methodologies, country and age groups that were enrolled. Conclusions: Primary care providers should interpret results on disease prevalence among people with intellectual disabilities in light of the study characteristics. Researchers should always interpret prevalence rates in the context of methodology.

People with intellectual disabilities (ID) experience complex medical care needs and high levels of multimorbidity. In mainstream healthcare, these needs might remain undetected leading to unmanaged health problems and avoidable deaths. In the Netherlands, general practitioners (GPs) can refer to specialized ID physicians when ID‐specific expertise is required. Little is known about the characteristics of specialized medical care for people with ID. This study explores the characteristics of specialized medical care for people with ID, including the interplay between medical‐, psychological‐, and context‐related problems. A retrospective cohort study using medical records of patients with ID who had visited the outpatient ID practice in Nijmegen, the Netherlands. Medical records (n = 128) were analyzed using descriptive statistics, focusing on (1) reasons for initial consultation, (2) health‐related problems identified during initial consultation, and (3) disciplines involved following initial consultation. Analyses were performed separately for patients who were referred by a medical professional and patients who visited the practice for proactive health checks related to the etiological diagnosis. Patients often initially visit the outpatient ID practice for one type of complaint, most often psychological. Diverse, multiple, and interconnected problems were identified during specialized medical ID consultation. A range of specialist professionals (n = 25) were involved by the ID physician. The health‐related problems of people with ID seen at the outpatient ID practice are diverse and interconnected, and originate from an interplay between medical‐, psychological‐, and context‐related problems. This complexity is not mirrored in the reasons for referring to the outpatient ID practice. It is essential to go beyond medical views and assess health complaints in an integrated way, including the way ID can influence all levels (physical, mental, contextual) of the experienced health issue within the context of everyday life. [ABSTRACT FROM AUTHOR]

Background: Type 2 diabetes mellitus, cardiovascular disease and chronic obstructive pulmonary disease contribute significantly to societal and individual impact globally. High‐quality management of these long‐term health conditions is important to prevent deterioration of health, although potentially more complex for patients with intellectual disabilities in residential care. Disease management in this context particularly benefits from complete and accurate recording of disease management. Without complete records, long‐term health conditions are more difficult to track due to the level of uncertainty regarding which clinical examinations have and have not been performed. This study therefore aims to examine the recording routines of quality indicators for disease monitoring for chronically ill patients with intellectual disabilities in Dutch residential care. Methods: This retrospective study utilised medical record data from a large Dutch long‐term care provider. We assessed the occurrence of cardiovascular disease (ICPC‐2 codes K74, K75, K76, K89 and K90), type 2 diabetes mellitus (T90, T90.02) and/or COPD (R91, R95). For adults with intellectual disabilities and long‐term condition, we analysed data entries in an 18‐month period (between July 2020 and December 2021). Observed consultation rates were calculated and presented in median with interquartile range and contrasted against the baseline number of consultations in primary care. Information on recorded quality indicators was presented in frequencies and percentages. Findings: Of the three long‐term conditions investigated, the most common was type 2 diabetes mellitus (8.6%; n = 287), followed by cardiovascular disease (5.8%; n = 195) and COPD (3.0%; n = 101). Of those who received management for their long‐term condition from their contracted GP, patients with type 2 diabetes mellitus, cardiovascular disease, or COPD had fewer consultations in 2021 than the Dutch baseline. Discussion of lifestyle was often not recorded. Disease monitoring quality indicators were recorded more often but at a lower frequency than expected. Conclusions: Because of the infrequent recording of quality indicators, recording of management of long‐term conditions for patients with intellectual disabilities in long‐term care appears suboptimal. Although this may not directly harm individual patients, it may jeopardise the quality of management of long‐term conditions, as suboptimal recording limits opportunities for evaluation and improvement. Within a broader trend towards data‐driven work methods in healthcare, recording of quality indicators requires attention from practice, research and policy. We should watch over long‐term diseases to help people stay healthy. We run tests, like checking blood pressure. The results are written in their medical records. These tests are like quality checks.We wanted to see if and how these quality checks were used, mostly for people with a learning disability living in care homes who also have heart disease, diabetes, or lung problems.We looked at their medical papers to see if these checks were there. We also looked at how often they saw the doctor.We found that chronically ill people with a learning disability went to the doctor quite often. But not as often as we expected. Also, the checks were not always written down. The talks about their lifestyle with the doctors were not noted very often.This can impact how well doctors care for the health issues of people with learning disability. [ABSTRACT FROM AUTHOR]

Taking the dynamics of everyday life into account is important for health behavior change. Surveys were conducted to gain insight into available health promoting physical activity and nutrition initiatives in the everyday life of people with intellectual disability (ID). Researchers considered characteristics of the initiatives and the attention they give to resources and hindering factors of healthy living for people with ID. The 47 initiatives mostly focused on physical activity and consisted of regularly organized, stand-alone activities. Care professionals, rather than health professionals, were involved. Organizational resources and hindering factors received relatively little attention. Health promotion for people with ID could benefit from incorporating health behavior into routines of daily living, focusing more attention on organizational resources, and improving the collaboration between health professionals and care professionals.

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 out-of-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.

Background: Disease management programmes (DMPs) aim to deliver standardised, high- quality care to patients with chronic diseases. Although chronic diseases are common among people with intellectual disabilities (ID), this approach may be suboptimal for meeting their care needs. Aim: To examine differences between patients with and without ID who have a chronic illness in DMP enrolment and disease monitoring in Dutch general practice. Design and setting: Observational study utilising the Nivel Primary Care Database (2015–2018) comparing patients with ID and cardiovascular disease, diabetes mellitus, or chronic obstructive pulmonary disease (COPD) with matched (1:5) controls with these conditions but without ID. Method: Using conditional logistic regression, enrolment in DMP per chronic disease was examined and differences tested between groups in the frequencies of consultations, medication prescriptions, and routine examinations. Results: A total of 2653 patients with chronic illness with ID were matched with 13 265 controls without ID. Patients with both diabetes mellitus and ID were more likely than controls to be enrolled in DMP (odds ratio [OR] = 1.44, 95% confidence interval [CI] = 1.27 to 1.64). Independent of DMP enrolment, patients with chronic illness with ID were more likely than controls to have frequent consultations. Patients with both diabetes mellitus and ID and patients with both COPD and ID who were not enrolled in DMPs had more medication prescriptions than non-enrolled patients with diabetes or COPD but without ID (OR = 1.46, 95% CI = 1.10 to 1.95; OR = 1.28, 95% CI = 0.99 to 1.66, respectively). Most patients with ID and their controls enrolled in DMPs received routine examinations at similar frequencies. Conclusion: Although DMPs do not specifically address the needs of patients with both chronic illness and ID, these patients do not seem underserved in the management of chronic diseases in terms of consultation, medication, and tests. [ABSTRACT FROM AUTHOR]

Background: Concerns have been raised about access to cancer screening and the timely receipt of cancer care for people with an intellectual disability (ID). However, knowledge about cancer mortality as a potential consequence of these disparities is still limited. This study, therefore, compared cancer‐related mortality patterns between people with and without ID. Methods: A historical cohort study (2015‐2019) linked the Dutch adult population (approximately 12 million people with an ID prevalence of 1.45%) and mortality registries. Cancer‐related mortality was identified by the underlying cause of death (according to the chapter on neoplasms in the International Classification of Diseases, Tenth Revision). Observed mortality and calculated age‐ and sex‐standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were reported. Results: There were 11,102 deaths in the ID population (21.7% cancer‐related; n = 2408) and 730,405 deaths in the general population (31.2%; n = 228,120) available for analysis. Cancer was noted as the cause of death more often among people with ID in comparison with the general population (SMR, 1.48; 95% CI, 1.42‐1.54), particularly in the young age groups. High‐mortality cancers included cancers within the national screening program (SMRs, 1.43‐1.94), digestive cancers (SMRs, 1.24‐2.56), bladder cancer (SMR, 2.07; 95% CI, 1.61‐2.54), and cancers of unknown primary (SMR, 2.48; 95% CI, 2.06‐2.89). Conclusions: Cancer was reported as the cause of death approximately 1.5 times more often in people with ID compared with the general population. This mortality disparity may indicate adverse effects from inequalities in screening and cancer care experienced by people with ID. Lay Summary: People with an intellectual disability (ID) may find it challenging to participate in cancer screening or to receive timely cancer care.To understand potential consequences in terms of mortality, this study compared cancer‐related mortality between people with and without ID in the Netherlands.Cancer was reported as the cause of death approximately 1.5 times more often among people with ID than others.Because large differences were found that were related to screening cancers and cancers for which the primary tumor was unknown, this study's results raise concerns about equality in screening practices and cancer care for people with ID. Cancer is reported as the cause of death approximately 1.5 times more often in people with an intellectual disability compared with those without one. Differences are particularly noted for deaths related to cancers within the national screening program and cancers of unknown primary. [ABSTRACT FROM AUTHOR]

Background: Primary care providers require accurate evidence on chronic disease prevalence in people with intellectual disabilities in order to apply this information into practice. This study aimed to map the broadness of literature on chronic disease prevalence in people with and without intellectual disabilities, and to explore main characteristics of these studies. Method: A scoping review of peer‐reviewed literature was conducted, covering 2000 to February 2020, including literature that discussed chronic disease prevalence in people with and without intellectual disabilities, with similar data collection method for both groups. Results: Nineteen studies were included. Chronic disease prevalence varied considerably between people with and without intellectual disabilities. Studies differed in their methodologies, country and age groups that were enrolled. Conclusions: Primary care providers should interpret results on disease prevalence among people with intellectual disabilities in light of the study characteristics. Researchers should always interpret prevalence rates in the context of methodology. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 FROM AUTHOR]

Abstract Background Falls are one of the main causes of fractures in elderly people and after a recent fracture, the risk of another fall is increased, resulting in subsequent fracture. Therefore, risk factors for future falls should be determined. We prospectively investigated the relationship between depression and the incidence of falls in post-menopausal women after a low-energy fracture. Methods At baseline, 181 women aged 60 years and older who presented with a recent low-energy fracture were evaluated at the fracture and osteoporosis outpatient clinics of two hospitals. As well as clinical evaluation and bone mineral density tests, the presence of depression (measured using the Edinburgh Depression Scale, EDS, depression cut-off > 11) and risk factors for falling were assessed. During two years of follow-up, the incidence of falls was registered annually by means of detailed questionnaires and interviews. Results Seventy-nine (44%) of the women sustained at least one fall during follow-up. Of these, 28% (n = 22) suffered from depression at baseline compared to 10% (n = 10) of the 102 women who did not sustain a fall during follow-up (Χ2 = 8.76, df = 1, p = .003). Multiple logistic regression showed that the presence of depression and co-morbidity at baseline were independently related to falls (OR = 4.13, 95% CI = 1.58-10.80; OR = 2.25, 95% CI = 1.11-4.56, respectively) during follow-up. Conclusions The presence of depression in women aged 60 years and older with recent low-energy fractures is an important risk factor for future falls. We propose that clinicians treating patients with recent low-energy fractures should anticipate not only on skeletal-related risk factors for fractures, but also on fall-related risk factors including depression.

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. [ABSTRACT FROM AUTHOR]