In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons' health care were to be conducted under ...this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu).
A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden).
Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies.
TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, ODKLJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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 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.
Objectives: To examine whether low serum albumin is associated with low muscle strength and future decline in muscle strength in community‐dwelling older men and women.
Design: Population‐based ...cohort study.
Setting: The Longitudinal Aging Study Amsterdam.
Participants: Six hundred seventy‐six women and 644 men aged 65 to 88.
Measurements: Serum albumin was determined at baseline. Muscle strength was assessed using grip strength at baseline, after 3 (n=1,009), and 6 (n=741) years. The outcomes were continuous baseline muscle strength, 3‐ and 6‐year change in muscle strength, and a dichotomous indicator for substantial decline (a decrease if ≥1 standard deviations for women=11 kg, for men=12 kg) in muscle strength.
Results: Mean serum albumin concentration±standard deviation was 45.0±3.3 g/L for women and 45.2±3.2 g/L for men. At baseline, adjusting for age, lifestyle factors, and chronic conditions, lower serum albumin was cross‐sectionally associated with weaker muscle strength (P<.001) in women and men. After 3 years of follow‐up, mean decline in muscle strength was −5.6±10.9 kg in women and −9.6±11.9 kg in men. After adjustment for potential confounders, lower serum albumin was associated with muscle strength decline over 3 years (P<.01) in women and men (β=0.57, standard error (SE)=0.18; β=0.37, SE=0.16, respectively). Lower serum albumin was also associated with substantial decline in muscle strength in women (per unit albumin (g/L) adjusted odds ratio (OR)=1.14, one‐sided 95% confidence limit (CL)=1.07) and men (per unit albumin (g/L) adjusted OR=1.14, 95% CL=1.08). Similar but slightly weaker associations were found between serum albumin and 6‐year change in muscle strength (P<.05).
Conclusion: These results suggest that low serum albumin, even within the normal range, is independently associated with weaker muscle strength and future decline in muscle strength in older women and men.
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.
To compare chronic disease and comorbidity patterns in chronically ill patients with and without ID in Dutch general practice.
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.
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.
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.
Primary aldosteronism (PA) is the most frequent cause of secondary hypertension. Reported prevalences of PA vary considerably because of a large heterogeneity in study methodology.
To examine the ...proportion of patients with PA among patients with newly diagnosed, never treated hypertension.
A cross-sectional study set in primary care.
GPs measured aldosterone and renin in adult patients with newly diagnosed, never treated hypertension. Patients with elevated aldosterone-to-renin ratio and increased plasma aldosterone concentration underwent a saline infusion test to confirm or exclude PA. The source population was meticulously assessed to detect possible selection bias.
Of 3748 patients with newly diagnosed hypertension, 343 patients were screened for PA. In nine out of 74 patients with an elevated aldosterone-to-renin ratio and increased plasma aldosterone concentration the diagnosis of PA was confirmed by a saline infusion test, resulting in a prevalence of 2.6% (95% confidence interval = 1.4 to 4.9). All patients with PA were normokalaemic and 8 out of 9 patients had sustained blood pressure >150/100 mmHg. Screened patients were younger (
<0.001) or showed higher blood pressure (
<0.001) than non-screened patients.
In this study a prevalence of PA of 2.6% in a primary care setting was established, which is lower than estimates reported from other primary care studies so far. This study supports the screening strategy as recommended by the Endocrine Society Clinical Practice Guideline. The low proportion of screened patients (9.2%), of the large cohort of eligible patients, reflects the difficulty of conducting prevalence studies in primary care clinical practice.
GPs frequently use 10-year-risk estimations of cardiovascular disease (CVD) to identify high- risk patients.
To assess the performance of four models for predicting the 10-year risk of CVD in Dutch ...general practice.
Prospective cohort study. Routine data (2009- 2019) was used from 46 Dutch general practices linked to cause of death statistics.
The outcome measures were fatal CVD for SCORE and first diagnosis of fatal or non- fatal CVD for SCORE fatal and non-fatal (SCORE- FNF), Globorisk-laboratory, and Globorisk-office. Model performance was assessed by examining discrimination and calibration.
The final number of patients for risk prediction was 1981 for SCORE and SCORE-FNF, 3588 for Globorisk-laboratory, and 4399 for Globorisk- office. The observed percentage of events was 18.6% (
= 353) for SCORE- FNF, 6.9% (
= 230) for Globorisk-laboratory, 7.9% (
= 323) for Globorisk-office, and 0.3% (
= 5) for SCORE. The models showed poor discrimination and calibration. The performance of SCORE could not be examined because of the limited number of fatal CVD events. SCORE-FNF, the model that is currently used for risk prediction of fatal plus non-fatal CVD in Dutch general practice, was found to underestimate the risk in all deciles of predicted risks.
Wide eligibility criteria and a broad outcome measure contribute to the model applicability in daily practice. The restriction to fatal CVD outcomes of SCORE renders it less usable in routine Dutch general practice. The models seriously underestimate the 10-year risk of fatal plus non-fatal CVD in Dutch general practice. The poor model performance is possibly because of differences between patients that are eligible for risk prediction and the population that was used for model development. In addition, selection of higher-risk patients for CVD risk assessment by GPs may also contribute to the poor model performance.
Abstract 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.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
BACKGROUND:Orthostatic hypotension, postprandial hypotension, and carotid sinus hypersensitivity are hypotensive syndromes with high prevalence in older people. However, their pathophysiology and ...prognostic significance remain largely unknown.
METHODS:In a retrospective cohort study of 313 consecutive patients visiting our falls outpatient clinic, we examined the clustering of orthostatic hypotension, postprandial hypotension, and carotid sinus hypersensitivity in the same patients, which might reflect a shared similar pathophysiology. The value of hypotensive syndrome presence and the degree of blood pressure decline as prognostic indicators for mortality were assessed using Cox proportional hazards analyses.
RESULTS:In 313 patients (mean age 78.7 ± 8.0 years), 168 of 309 (54%), 175 of 302 (58%), and 143 of 272 (53%) were diagnosed with orthostatic hypotension, postprandial hypotension, and sinus carotid hypersensitivity, respectively. There was no clustering of the hypotensive syndromes. During a median follow-up of 23.0 months, 58 (19%) patients died. Orthostatic hypotension, but not postprandial hypotension or carotid sinus hypersensitivity, predicted mortality hazard ratio 1.97; 95% confidence interval (CI) 1.11–3.47. After adjusting for age, comorbidity and other baseline characteristics, this relationship was no longer significant. However, orthostatic hypotension with severe diastolic blood pressure decline of at least 20 mmHg remained a powerful independent predictor of mortality (hazard ratio 2.50; 95% CI 1.20–5.22).
CONCLUSIONS:In falls clinic patients, hypotensive syndromes did not cluster and did not independently predict mortality. However, orthostatic hypotension with severe diastolic blood pressure decline was a powerful independent predictor of mortality and might be used prognostically as an easily available cardiovascular sign of increased mortality risk.
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