Asthma and COPD management of patients with intellectual disabilities in general practice.

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.

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.

Cancer risks related to intellectual disabilities: A systematic review.

BACKGROUND: People with intellectual disabilities (ID) face barriers in cancer care contributing to poorer oncological outcomes. Yet, understanding cancer risks in the ID population remains incomplete. AIM: To provide an overview of cancer incidence and cancer risk assessments in the entire ID population as well as within ID-related disorders. METHODS: This systematic review examined cancer risk in the entire ID population and ID-related disorders. We systematically searched PubMed (MEDLINE) and EMBASE for literature from January 1, 2000 to July 15, 2022 using a search strategy combining terms related to cancer, incidence, and ID. RESULTS: We found 55 articles assessing cancer risks in the ID population at large groups or in subgroups with ID-related syndromes, indicating that overall cancer risk in the ID population is lower or comparable with that of the general population, while specific disorders (e.g., Down's syndrome) and certain genetic mutations may elevate the risk for particular cancers. DISCUSSION: The heterogeneity within the ID population challenges precise cancer risk assessment at the population level. Nonetheless, within certain subgroups, such as individuals with specific ID-related disorders or certain genetic mutations, a more distinct pattern of varying cancer risks compared to the general population becomes apparent. CONCLUSION: More awareness, and personalized approach in cancer screening within the ID population is necessary.

The importance of cancer prevention policies to inform and guide preventative and screening measures for people with intellectual disabilities: The COST project "Cancer- Understanding Prevention in Intellectual Disabilities".

Cancer is a global public health problem, but its exact prevalence in people with intellectual disabilities is still uncertain. This population, with limited health skills and complex health needs, faces many challenges in cancer prevention, screening, timely diagnosis and treatment. Furthermore, they are often underrepresented in general cancer prevention and screening policies across Europe, leading to widened disparities in health outcomes and premature mortality. Thus, unified national and local policies are needed to reduce inequalities and promoting a pan-European inclusion of people with intellectual disabilities. Our goal is to raise public awareness of this issue, including the involvement of people with intellectual disabilities, and promote engagement from relevant stakeholders. The COST Action 'Cancer- Understanding Prevention in Intellectual Disabilities' (CUPID) project will address health inequalities faced by people with intellectual disabilities in relation to cancer, and support the development of policy recommendations specifically tailored to their unique cognitive and healthcare needs, having a positive long-term impact on quality of life.

Chronic disease management in patients with intellectual disabilities: a matched study in Dutch general practice.

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.

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.

Chronic diseases and comorbidities in adults with and without intellectual disabilities: comparative cross-sectional study in Dutch general practice.

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.

Cancer treatment and decision making in individuals with intellectual disabilities: a scoping literature review.

Adults with intellectual disabilities face disparities in receipt of cancer-related care, which could contribute to an increase in the rate of cancer-related deaths in this population. Yet, relatively little is known about the optimal cancer treatment or treatment decision making in adults with intellectual disabilities. This scoping review assessed PubMed and Embase for available literature on the description of cancer treatment and treatment decision making in patients with intellectual disabilities, published in English between Jan 1, 2000, and April 30, 2020. We appraised 90 included articles and extracted quotes addressing aspects related to cancer treatment and treatment decision making in patients with intellectual disabilities. Themes and subcategories were subsequently derived. Our findings revealed that the available literature describes that people with intellectual disabilities tend to have less intensive cancer treatment than generally administered, but with little evidence supporting this approach. This finding indicates that this medically vulnerable patient population needs tailored attention in both cancer care and research. We propose changes to practice and conclude by addressing the urgent need to pay specific attention to this patient population.

Exploring chronic disease prevalence in people with intellectual disabilities in primary care settings: A scoping review.

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.

Cancer-related mortality among people with intellectual disabilities: A nationwide population-based cohort study.

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.

[Oncological treatment of patients with intellectual disability: too limited?] / Oncologische behandeling van patiënten met een verstandelijke beperking.

Genetic factors and lifestyle contribute to specific risks for developing cancer in people with intellectual disabilities. However, early detection and oncological care are less accessible to people with intellectual disabilities than to the general population, contributing to relatively more cancer-related deaths in this population. In order to optimally adapt oncological care to the characteristics and needs of people with intellectual disabilities, regular treatment may need to be adjusted sometimes. Yet, little is known about treatment adjustments in this setting. Scientific articles describing adaptations in oncological care for people with intellectual disabilities often provide no reasons as to why these changes were made. Adequately adapted oncological care for people with intellectual disabilities therefore mainly depends on affinity and experience of individual clinicians. Awareness for abnormal symptoms, genetic factors, and collaboration with other care providers, like the intellectual disability physician is advised.

Differences in treatment choices between prostate cancer patients using a decision aid and patients receiving care as usual: results from a randomized controlled trial.

OBJECTIVE: To determine whether or not decision aid (DA) use influences treatment decisions in patients with low and intermediate risk prostate cancer (PC). PATIENTS AND METHODS: In a cluster randomized controlled trial, patients were randomized to either DA use (DA group) or no DA use (control group). Between 2014 and 2016, newly diagnosed patients with low or intermediate risk PC were recruited in 18 hospitals in the Netherlands. DA users had access to a web-based DA that provided general PC information, PC-treatment information, and values clarification exercises to elicit personal preferences towards the treatment options. Control group patients received care as usual. Differences in treatment choice were analysed using multilevel logistic regressions. Differences in eligible treatment options between groups were compared using Pearson Chi-square tests. RESULTS: Informed consent was given by 382 patients (DA group N = 273, control group N = 109). Questionnaire response rate was 88% (N = 336). Active surveillance (AS) was an option for 38%, radical prostatectomy (RP) for 98%, external beam radiotherapy (EBRT) for 88%, and brachytherapy (BT) for 79% of patients. DA users received AS significantly more often than control group. Patients (29 vs 16%, p = 0.01), whereas the latter more often chose BT (29 vs 18%, p < 0.01). No differences were found between groups regarding RP and EBRT. DA users who were not eligible for AS, received surgery more often compared to the control group (53 vs 35%, p = 0.01). Patient and disease characteristics were evenly distributed between groups. CONCLUSION: DA-using PC patients chose the AS treatment option more often than non-DA-using patients did.

Linking national public services data to estimate the prevalence of intellectual disabilities in The Netherlands: results from an explorative population-based study.

OBJECTIVES: Individuals with intellectual disabilities (ID) depend on public services for daily support and medical care; however, this group of individuals can be difficult to identify within population data. This therefore limits the opportunities to accurately estimate the size of the population with ID, monitor trends and tailor public health interventions according to the needs and characteristics of this group. By linking relevant databases, this study sought to identify individuals with ID in national data, to estimate the prevalence of ID based on public service use and to explore how this method can be used to better monitor the population with ID. STUDY DESIGN: Explorative data linkage study using the Dutch population register and databases from public services accessible with an ID diagnosis. METHODS: The overall prevalence of ID in the Dutch adult population was estimated, specified by age group and sex, and the identified ID groups were also characterised by their support needs. Participants included the entire adult Dutch population who were alive on 1 January 2015. RESULTS: After linking databases, 187,149 adults with ID were identified within a population of almost 12.7 million Dutch adults, giving an ID prevalence estimate of 1.45%. Prevalence of ID was higher among males (1.7%) than females (1.2%). Most individuals with ID were identified through the use of residential care services (n = 91,064; 0.7%). Non-residential ID-related care was used by 27,007 individuals (0.2%). Social, employment or income support due to a (mild) ID was received by 69,078 individuals (0.5%); the mean age in these ID groups was between 8 and 10 years which is younger than that in the general Dutch population. ID prevalence declined with increasing age across all ID subgroups. CONCLUSIONS: The ID prevalence in The Netherlands, as determined by ID-related public service usage, aligns with international estimates. This suggests that national supportive services are accessible and used by individuals with ID. Moreover, this demonstrated that databases from national supportive services can be a useful resource to identify individuals with ID at the population level and can enable structural monitoring of the ID population through linking national databases.

Patterns in the prevalence of diabetes and incidence of diabetic complications in people with and without an intellectual disability in Dutch primary care: Insights from a population-based data-linkage study.

AIMS: To conduct an epidemiological analysis of patterns observed in diabetes care provided to individuals with and without intellectual disabilities (ID) in primary care settings. METHODS: An ID-cohort (N = 21,203) was compared with a control group of similar age and sex from the general Dutch population (N = 267,628). Distinctive data for diabetes (both type 1 and type 2) and related complications were retrieved from national databases. RESULTS: The prevalence of diabetes was higher in people with ID than in the general population (9.9% versus 6.6%). Largest differences were seen in younger age groups. Women with ID had diabetes more often than men with ID. Complications were less common in people with ID than in the general population (IR 58.6 vs. 70.4). In particular, cardiological complications were noted less, while surgical interventions and hospitalization occurred more often. CONCLUSIONS: Although diabetes was 1.5 times more prevalent in people with ID than in other people, related complications were less common, followed different patterns and were more severe than in the general population. Future research is needed to understand of the underlying causal mechanisms and to lower the risk of severe diabetic complications among people with ID.

Disparities in cancer-related healthcare among people with intellectual disabilities: A population-based cohort study with health insurance claims data.

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.

Treatment Preferences of Patients With Benign Prostatic Hyperplasia Before and After Using a Web-based Decision Aid.

OBJECTIVE: To evaluate treatment preferences of patients with lower urinary tract symptoms suggestive of benign prostatic hyperplasia (LUTS/BPH) before and after using a web-based decision aid (DA). PATIENTS AND METHODS: Between July 2016 and January 2017 patients were invited to use a web-based LUTS/BPH DA. Treatment preferences (for lifestyle advices, medication or surgery) before and after DA use and responses on values clarification exercises were extracted from the DA. RESULTS: In total, 126 patients were included in the analysis. Thirty-four percent (43/126) had not received any previous treatment and were eligible for (continuation of) lifestyle advices or to start medication, as initial treatment. The other 66% (83/126) did use medication and were eligible, either for continuing medication or to undergo surgery. Before being exposed to the DA, 67 patients (53%) were undecided and 59 patients (47%) indicated an initial treatment preference. Half of the patients who were initially undecided were able to indicate a preference after DA use (34/67, 51%). Of those with an initial preference, 80% (47/59) confirmed their initial preference after DA use. Five out of 7 values clarification exercises used in the DA were discriminative between final treatment preferences. In 79%, the treatment preferred after DA use matched the received treatment. Overall, healthcare providers were positive about DA feasibility. CONCLUSION: Our findings suggest that a LUTS/BPH DA may help patients to confirm their initial treatment preference and support them in forming a treatment preference if they did not have an initial preference.

Introducing Decision Aids into Routine Prostate Cancer Care in The Netherlands: Implementation and Patient Evaluations from the Multi-regional JIPPA Initiative.

Uptake of decision aids (DAs) in daily routine is low, resulting in limited knowledge about successful DA implementation at a large scale. We assessed implementation rates after multi-regional implementation of three different prostate cancer (PCa) treatment DAs and patient-perceived barriers and facilitators to use a DA. Thirty-three hospitals implemented one out of the three DAs in routine care. Implementation rates for each DA were calculated per hospital. After deciding about PCa treatment, patients (n = 1033) completed a survey on pre-formulated barriers and facilitators to use a DA. Overall DA implementation was 40%. For each DA alike, implementation within hospitals varied from incidental (< 10% of eligible patients receiving a DA) to high rates of implementation (> 80%). All three DAs were evaluated positively by patients, although concise and paper DAs yielded higher satisfaction scores compared with an elaborate online DA. Patients were most satisfied when they received the DA within a week after diagnosis. Pre-formulated barriers to DA usage were experienced by less than 10% of the patients, and most patients confirmed the facilitators. Many patients received a DA during treatment counseling, although a wide variation in uptake across hospitals was observed for each DA. Most patients were satisfied with the DA they received. Sustained implementation of DAs in clinical routine requires further encouragement and attention.

Uptake and usage of an online prostate cancer treatment decision aid in Dutch clinical practice: A quantitative analysis from the Prostate Cancer Patient Centered Care trial.

Implementation of patient's decision aids in routine clinical care is generally low. This study evaluated uptake and usage of a novel Dutch web-based prostate cancer treatment decision aid within the Prostate Cancer Patient Centered Care trial. From an estimated total patient sample of 1006 patients, 351 received a decision aid (35% implementation rate; hospital ranges 16%-84%). After receipt of the decision aid, most patients accessed the decision aid, utilized most functions, although not completely, and discussed the decision aid summary in a subsequent consultation with their care provider. Including nurses for dissemination of decision aids seemed to positively affect decision aid uptake. Once received, patients seemed able to use the decision aid and engage in shared decision-making as intended; however, decision aid uptake and complete usage of all decision aid components should be further improved. Prior to the diagnosis consultation, handing out of the decision aid should be prepared.