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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.

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 [...]

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: 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]

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: The organization of healthcare for people with intellectual and developmental disabilities (IDD) varies across countries. Each country has developed unique practices embedded in their historical and organizational context. Understanding and sharing these practices across borders facilitates mutual understanding about healthcare needs of people with IDD and facilitates the adoption of effective strategies in other countries. Aim: To provide a synthesis across the country‐specific papers in the JPPID special edition and thereby identify underlying trends, challenges, and best practices in healthcare for people with IDD. Methods: The papers in this special edition, which describe the organization of healthcare for people with IDD in 13 countries, were qualitatively analyzed using thematic content analysis, focusing on general characteristics, history, and context, organization of healthcare for people with IDD, challenges, and best practices. Results: Each paper described a specific national history of evolution of healthcare for people with IDD, but our analysis showed that countries face similar challenges in healthcare for people with IDD. These challenges cover (1) access to healthcare, (2) quality of healthcare, (3) implementation, and (4) visibility of people with IDD. Consequently, people with IDD continue to face significant health disparities. Several best practices have been developed, ranging from making mainstream healthcare more accessible and suitable to providing specialized services, and advocating and raising awareness. Conclusions: This synthesis is the first paper to include perspectives on healthcare for people with IDD across 13 countries. We identified that, despite differences in context, countries face similar challenges in improving healthcare for people with IDD. International collaboration and networking can provide essential tools in reducing health disparities that people with IDD face, starting with the challenges identified in this synthesis. This will require effort to especially include low‐ and middle‐income countries. [ABSTRACT FROM AUTHOR]

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: The use of eHealth is more challenging for people with intellectual disabilities (IDs) than for the general population because the technologies often do not fit the complex needs and living circumstances of people with IDs. A translational gap exists between the developed technology and users' needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation processes of the technology. The effectiveness and use of eHealth have received much scholarly attention, but little is known about user involvement approaches. Objective: In this scoping review, we aimed to identify the inclusive approaches currently used for the design, development, and implementation of eHealth for people with IDs. We reviewed how and in what phases people with IDs and other stakeholders were included in these processes. We used 9 domains identified from the Centre for eHealth Research and Disease management road map and the Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework to gain insight into these processes. Methods: We identified both scientific and gray literature through systematic searches in PubMed, Embase, PsycINFO, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (health care) organizations. We included studies published since 1995 that showed the design, development, or implementation processes of eHealth for people with IDs. Data were analyzed along 9 domains: participatory development, iterative process, value specification, value proposition, technological development and design, organization, external context, implementation, and evaluation. Results: The search strategy resulted in 10,639 studies, of which 17 (0.16%) met the inclusion criteria. Various approaches were used to guide user involvement (eg, human or user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described in less detail. The literature focused on the application of eHealth at an individual level and did not consider the organizational context. Inclusive approaches in the design and development phases were well described; however, the implementation phase remained underexposed. Conclusions: The participatory development, iterative process, and technological development and design domains showed inclusive approaches applied at the start of and during the development, whereas only a few approaches involved end users and iterative processes at the end of the process and during implementation. The literature focused primarily on the individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. More attention is needed for these underrepresented domains, and key stakeholders should be included further on in the process to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context. [ABSTRACT FROM AUTHOR]

Background: Chronic disease and comorbidity patterns in people with intellectual disabilities (ID) are more complex than in the general population. However, incomplete understanding of these differences limits care providers in addressing them.Objective: To compare chronic disease and comorbidity patterns in chronically ill patients with and without ID in Dutch general practice.Methods: In this population-based study, a multi-regional primary care database of 2018 was combined with national population data to improve identification of adults with ID. Prevalence was calculated using Poisson regression to estimate prevalence ratios and 95% confidence intervals for the highest-impact chronic diseases (ischemic heart disease (IHD), cerebrovascular disease (CVD), diabetes mellitus (DM), and chronic obstructive pulmonary disease (COPD)) and comorbidities.Results: Information from 18,114 people with ID and 1,093,995 people without ID was available. When considering age and sex, CVD (PR = 1.1), DM (PR = 1.6), and COPD (PR = 1.5) times more prevalent in people with than without ID. At younger age, people with ID more often had a chronic disease and multiple comorbidities. Males with ID most often had a chronic disease and multiple comorbidities. Comorbidities of circulatory nature were most common.Conclusions: This study identified a younger onset of chronic illness and a higher prevalence of multiple comorbidities among people with ID in general practice than those without ID. This underlines the complexity of people with ID and chronic diseases in general practice. As this study confirmed the earlier onset of chronic diseases and comorbidities, it is recommended to acknowledge these age differences when following chronic disease guidelines. [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: 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: Concerns have been raised about the accessibility and quality of cancer‐related care for people with intellectual disabilities (ID). However, there is limited insight into cancer incidence and the utilization of cancer care at the ID population level to inform targeted cancer control strategies. Therefore, we aimed to examine differences in the utilization of cancer‐related care between people with and without ID, identified through diagnostic codes on health insurance claims. Methods: In a population‐based cohort study, Dutch individuals of all ages who received residential care through the Chronic Care Act due to an ID (n = 65 183) and an age and sex‐matched sample of persons without ID (1:2 ratio), who were cancer‐free at enrollment in 2013 were followed through 2015. Incidence rates (IRs) of newly started cancer care and IR ratios (IRRs) with 95% CIs were used to compare groups. Separate analyses were performed per cancer type. Results: Individuals with ID received less cancer‐related care than individuals without (IRR = 0.64, 95% CI 0.62‐0.66). Differences increased with age and were larger for females than for males. Utilization of care for cancers within the national screening program (female breast, cervical, and colon cancer) was lower for people with ID compared to people without ID. Conclusion: Cancer may be underdiagnosed and/or undertreated in people with ID, or cancer is truly less prevalent in this population. In particular, the differences detected between males and females with ID, and the potential underutilization of national screening programs, require urgent follow‐up investigations. [ABSTRACT FROM AUTHOR]

Objectives To investigate whether people with intellectual disabilities (ID) in residential setting were more likely than people from the general population to request out-of-hours general practitioner (GP) care and whether these requests had a similar level of urgency. Design Cross-sectional routine data-based study. Setting Two GP cooperatives providing out-of-hours primary care in an area in the Netherlands. Population 432 582 persons living in the out-of-hours service areas, of which 1448 could be identified as having an ID. Main outcome measures GP cooperative records of all contacts in 2014 for people with and without ID were used to calculate the relative risk of requesting care and the associated level of urgency. Results Of the people with ID (448/1448), 30.9% requested out-of-hours GP care, whereas for the general population this was 18.4% (79 206/431 134), resulting in a relative risk of 1.7 (95% CI 1.6 to 1.8). We found a different distribution of urgency level for people with and without ID. Generally, requests for people with ID were rated as less urgent. Conclusion People with ID in residential setting were more likely to request out-of-hours GP care than the general population. The distribution of the urgency level of requests differed between the two groups. The high percentage of demands relating to people with ID requesting counselling and advice suggests that some out-of-hours GP care may be avoidable. However, more insight is needed into the nature of out-of-hours primary care requests of people with ID to direct structural and reasonable adjustments towards the improvement of health information exchange in and around-the-clock access to primary care for people with ID. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The application of biochemical markers to detect heavy alcohol use in women has shown disappointing results until now. We evaluated carbohydrate-deficient transferrin (CDT) by the CDTcct® method and γ-glutamyltransferase (GGT) in a large cohort of alcohol-using perimenopausal women studied primarily for osteoporosis. Methods: CDT and GGT were measured in 431 women aged 46 to 54 years, who were selected from a large cohort ( n= 8503) of pre-, peri-, and postmenopausal women. Their alcohol intake was known from questionnaires and face-to-face interviews. Three groups were constructed for statistical analysis: those drinking on average less than 7 alcoholic drinks per week ( n= 103), those drinking 7 to 34 per week ( n= 280), and those drinking at least 35 per week ( n= 48). Results: The mean values of CDT and GGT of the three groups increased with an increasing alcohol intake, but there was a poor correlation between CDT and GGT in the complete study group ( r= 0.3). The specificities of CDT and GGT were comparable, 83% and 78%, respectively. The sensitivities for CDT and GGT were 30% and 50%, respectively. A logistic regression model could assign, overall, 77% of the women correctly in relation to their alcohol intake: 43% of the women drinking at least 35 drinks per week and 92% of the women drinking less than 7 drinks per week. Conclusions: The test characteristics of both GGT and CDT are not good enough to be used as biochemical markers for detecting heavy alcohol use in women. The use of a logistic regression model offers an advantage, because both numeric values of CDT and GGT are taken into account instead of arbitrary cutoff values. [ABSTRACT FROM AUTHOR]

Background: Carbohydrate-deficient transferrin (CDT) has been reported as an excellent marker for male alcohol abuse. Little is known about its validity among women, in whom rather conflicting data concerning the efficiency of the CDT marker and its biochemical mechanism have been reported. Moreover, it is not clear why the reference ranges are different for women (0 to 26 Units per liter) and men (0 to 20 Units per liter). Methods: In this population-based study, we examined the normal CDT values measured by CDTect® in 331 healthy female teetotalers, randomly selected from a large cohort. They were divided into four groups: premenopausal women ( n= 76), perimenopausal women ( n= 86), postmenopausal women ( n= 84), and users of estrogens/progestagens ( n= 85). Results: The mean of the CDT value in the premenopausal group (15.2 Units per liter) was significantly higher than the mean in the postmenopausal group (13.6 Units per liter; p < 0.016). In pre- and perimenopausal women, higher CDT levels were associated with the last period of menstruation; for women menstruating less than 1 month ago versus longer ago, the mean serum CDT value was 15.4 vs. 13.0 Units per liter ( p < 0.01). Conclusions: The premenopausal state seems to increase serum levels of CDT, probably due to the amount and frequency of blood loss during the menstrual period, and should be considered when interpreting CDT values in women. [ABSTRACT FROM AUTHOR]

Objective: People with intellectual disabilities (ID) are largely dependent on their environment to live healthily and, in this, ID-support organizations play a vital role. An environmental asset mapping tool for ID-support settings has been developed. This study aims to provide insight into whether or not the tool can provide a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings.Methods: Fifty-seven users from four setting completed the tool on availability, user satisfaction, and dreams regarding social, physical, organizational, and financial assets.Results: The findings provide a comprehensive view of available assets. Together with user satisfaction and dreams for improvements, they provide actionable knowledge for improving the health-promoting capacities of the settings, including: (1) how use of available assets can be improved, (2) the type of assets that should be enriched, and (3) the assets that can be added to the system.Conclusion: The asset mapping tool provides a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings.Practice Implications: ID-support organizations can use the tool to generate actionable bottom-up knowledge for priority setting and implementing interventions to improve their health-promoting capacities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: Background: The identification of vertebral fractures (VFs) is important for decisions on fracture prevention. Vertebral fracture assessment (VFA) was shown to be a patient-friendly and valid method for detecting undiagnosed VFs in (Dutch) women. However, this has only been investigated in women seeking care at secondary or tertiary institutions. Objective: To investigate the prevalence of previously undiagnosed VFs in women in Dutch primary care using VFA. Study design: A total of 566 Dutch women aged 50 years and older (mean age, 69 years; SD=8.4) with clinical risk factors (CRFs) for fractures volunteered for dual-energy X-ray absorptiometry (DXA) measurement and VFA. VFs were defined semi-quantitatively using Genant''s method. Results: One CRF was present in each of 130 women, 274 had two, and 162 women had more than two CRFs. In 120 (21%) of the women, previously unknown osteoporosis (T-score ≤ −2.5SD) was diagnosed, and in 174 (31%), a previously undiagnosed moderate or severe VF was found. No osteoporosis was found in 130 (75%) of the women with a VF. Based on the outcome of DXA, 21% of the women were eligible for treatment, while the combination of DXA and VFA resulted in a total of 250 (44%) women requiring treatment. Conclusions: The percentage of previously unknown VFs diagnosed by VFA in women aged 50 years and older with one or more CRFs for fractures in primary care is high. When only using BMD measurements, only half the women eligible for treatment would actually receive this. We recommend performing VFA in all women aged 50 years and older who are referred for DXA based on Dutch case finding criteria. [Copyright &y& Elsevier]

Background: 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: A qualitative study was undertaken using focus groups with GPs and MHNPs in the Netherlands., Method: The focus groups were 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 nine 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; and (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., (Copyright © 2024, The Authors.)