Publications by authors named "Jenneken Naaldenberg"

30 Publications

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

Cancer 2021 Nov 17. Epub 2021 Nov 17.

Department of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands.

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.
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http://dx.doi.org/10.1002/cncr.34030DOI Listing
November 2021

Out-of-hours primary care for people with intellectual disabilities: interviews in general practice.

Fam Pract 2022 01;39(1):106-111

Radboud University Medical Center, Radboud Institute for Health Sciences, Department of Primary and Community Care, Nijmegen, The Netherlands.

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.
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http://dx.doi.org/10.1093/fampra/cmab062DOI Listing
January 2022

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

Public Health 2021 Jun 29;195:83-88. Epub 2021 May 29.

Radboud Institute for Health Sciences, Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands.

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.
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http://dx.doi.org/10.1016/j.puhe.2021.04.002DOI Listing
June 2021

Gaining actionable knowledge to improve local health-promoting capacities in long-term care support settings for people with intellectual disabilities.

Patient Educ Couns 2021 May 23. Epub 2021 May 23.

Department of Primary and Community Care, Intellectual Disabilities and Health, Radboud University Medical Center, 6500 HB Nijmegen, The Netherlands.

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.
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http://dx.doi.org/10.1016/j.pec.2021.05.033DOI Listing
May 2021

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.

Prim Care Diabetes 2021 04 13;15(2):372-377. Epub 2020 Dec 13.

Radboud Institute for Health Sciences, Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands.

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.
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http://dx.doi.org/10.1016/j.pcd.2020.11.012DOI Listing
April 2021

The compatibility of reductionistic and complexity approaches in a sociomedical innovation perspective.

BMJ Glob Health 2020 12;5(12)

Institute for Science in Society, Radboud University Nijmegen, Nijmegen, Gelderland, Netherlands.

Medical technologies, e-health and personalised medicine are rapidly changing the healthcare landscape. Successful implementation depends on interactions between the technology, the actors and the context. More traditional reductionistic approaches aim to understand isolated factors and linear cause-effect relations and have difficulties in addressing inter-relatedness and interaction. Complexity theory offers a myriad of approaches that focus specifically on behaviour and mechanisms that emerge from interactions between involved actors and the environment. These approaches work from the assumption that change does not take place in isolation and that interaction and inter-relatedness are central concepts to study. However, developments are proceeding fast and along different lines. This can easily lead to confusion about differences and usefulness in clinical and healthcare research and practice. Next to this, reductionistic and complexity approaches have their own merits and much is to be gained from using both approaches complementary. To this end, we propose three lines in complexity research related to health innovation and discuss ways in which complexity approaches and reductionistic approaches can act compatibly and thereby strengthen research designs for developing, implementing and evaluating health innovations.
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http://dx.doi.org/10.1136/bmjgh-2020-003858DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7716664PMC
December 2020

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

Cancer Med 2020 09 25;9(18):6888-6895. Epub 2020 Jul 25.

Department of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.

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.
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http://dx.doi.org/10.1002/cam4.3333DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7520346PMC
September 2020

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

J Appl Res Intellect Disabil 2020 Nov 6;33(6):1489-1499. Epub 2020 Jul 6.

Department of Primary and Community Care, Intellectual Disabilities and Health, Radboud University Medical Center, Radboud Institute for Health Sciences, Nijmegen, The Netherlands.

Background: People with intellectual disabilities (ID) depend on their environment to live healthily. Asset-based health promotion enhances a settings' health-promoting capacity starting with identifying protective or promotive factors that sustain health.

Method: This inclusive mixed-methods study used group sessions to generate and rank ideas on assets supporting healthy nutrition and physical activity in Dutch intellectual disability care settings. Participants included people with moderate intellectual disabilities and family and care professionals of people with severe/profound intellectual disabilities.

Results: Fifty-one participants identified 185 assets in group sessions. They include the following: (i) the social network and ways "people" can support, (ii) assets in/around "places," and person-environment fit, and (iii) "preconditions": health care, prevention, budget, and policy.

Conclusion: This inclusive research provides a user perspective on assets in the living environment supporting healthy living. This gives insight in contextual factors needed for development and sustainable embedment of health promotion in the systems of intellectual disability support settings.
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http://dx.doi.org/10.1111/jar.12776DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7689850PMC
November 2020

Integrating Health Promotion in the Everyday Life of People With Intellectual Disability-The Extent to Which Current Initiatives Take Context Into Account.

Intellect Dev Disabil 2020 04;58(2):170-179

Noortje M. J. Kuijken, Jenneken Naaldenberg, Kristel Vlot-van Anrooij, Maria W. G. Nijhuis-van der Sanden, Henny M. J. van Schrojenstein Lantman-de Valk, and Geraline L. Leusink, Radboud University Medical Center.

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.
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http://dx.doi.org/10.1352/1934-9556-58.2.170DOI Listing
April 2020

Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool.

Int J Environ Res Public Health 2020 01 28;17(3). Epub 2020 Jan 28.

Department of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, P.O box 9101, 6500 HB Nijmegen, The Netherlands.

People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom-up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews ( = 7), interviews with end-users ( = 7), and pilot testing ( = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings.
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http://dx.doi.org/10.3390/ijerph17030794DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7037294PMC
January 2020

A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co-researchers with intellectual disabilities.

J Appl Res Intellect Disabil 2019 May 22;32(3):719-729. Epub 2019 Feb 22.

Chair Disability Studies: Diversity in Participation, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.

Background: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach.

Method: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team.

Results: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other.

Conclusions: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.
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http://dx.doi.org/10.1111/jar.12567DOI Listing
May 2019

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care.

J Appl Res Intellect Disabil 2019 Mar 23;32(2):475-481. Epub 2018 Oct 23.

Department of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.

Background: Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population.

Method: Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20-65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability.

Results: Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively).

Conclusions: Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.
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http://dx.doi.org/10.1111/jar.12537DOI Listing
March 2019

Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability.

BMC Med Res Methodol 2018 07 16;18(1):80. Epub 2018 Jul 16.

Department of Primary and Community Care, Radboud University Medical Center, P.O. Box 9101, route 68, 6500, HB, Nijmegen, The Netherlands.

Background: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales.

Methods: In an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations.

Results: Main adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well.

Conclusions: This study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study's results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.
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http://dx.doi.org/10.1186/s12874-018-0539-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048750PMC
July 2018

An exploration of the participation of people with intellectual disabilities in research-a structured interview survey.

J Appl Res Intellect Disabil 2018 Sep 2;31(5):942-947. Epub 2018 Apr 2.

Department of Primary and Community Care - Intellectual Disabilities and Health, Radboud University Medical Center, Nijmegen, The Netherlands.

Background: Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results.

Method: Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results.

Results: Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information.

Conclusions: Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as "empowerment," can be supported to facilitate their involvement in research.
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http://dx.doi.org/10.1111/jar.12453DOI Listing
September 2018

Does risk and urgency of requested out-of-hours general practitioners care differ for people with intellectual disabilities in residential settings compared with the general population in the Netherlands? A cross-sectional routine data-based study.

BMJ Open 2017 Nov 3;7(11):e019222. Epub 2017 Nov 3.

Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands.

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.
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http://dx.doi.org/10.1136/bmjopen-2017-019222DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5695369PMC
November 2017

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study.

Patient Educ Couns 2017 Oct 15;100(10):1842-1851. Epub 2017 Apr 15.

Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands. Electronic address:

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.
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http://dx.doi.org/10.1016/j.pec.2017.04.010DOI Listing
October 2017

After-hours primary care for people with intellectual disabilities in The Netherlands-Current arrangements and challenges.

Res Dev Disabil 2016 Dec 30;59:1-7. Epub 2016 Jul 30.

Radboud University Medical Center, Radboud Institute for Health Sciences, Department of Primary and Community Care, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands. Electronic address:

Background: Little is known about the organisation of after-hours primary care for people with intellectual disabilities (ID), and mainstream care is not self-evidently accessible or fit for this group. A first step towards improvement is a greater understanding of current after-hours primary ID care.

Aims: This study explores the organisation of and experiences with after-hours primary care provided for people with ID in The Netherlands.

Methods And Procedures: A telephone survey amongst 68 care provider services including questions on organisational characteristics, problem areas, facilitators, and inhibitors.

Outcomes And Results: A multitude of different after-hours primary care arrangements were found. Primary care physicians (PCPs) were involved in almost all care provider services, often in alliance with PCP cooperatives. Specialised ID physicians had differing roles as gatekeeper, primary caregiver, or consultant. Most problems during the after-hours arose regarding daily care professionals' competences. Facilitators and inhibitors of after-hours primary care were themed around complexity of, and need for, specialised care, multidisciplinary team of professionals, communication and information, and prerequisites at organisational level.

Conclusions And Implications: Evidence on specific after-hours health needs of people with ID is needed to strengthen collaboration between specialist ID care services and mainstream healthcare services to adequately provide care.
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http://dx.doi.org/10.1016/j.ridd.2016.07.007DOI Listing
December 2016

Health information exchange for patients with intellectual disabilities: a general practice perspective.

Br J Gen Pract 2016 Oct 1;66(651):e720-8. Epub 2016 Aug 1.

Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.

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.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5033308PMC
http://dx.doi.org/10.3399/bjgp16X686593DOI Listing
October 2016

Experiences of patients with intellectual disabilities and carers in GP health information exchanges: a qualitative study.

Fam Pract 2016 10 12;33(5):543-50. Epub 2016 Jul 12.

Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.

Background: Accurate health information exchange (HIE) is pivotal for good quality of care. However, patients with intellectual disabilities (ID) face challenges in processing and exchanging health information around GP consultations. Knowledge of HIE barriers and facilitators, including the roles of carers, may help to improve GP care for people with ID.

Objective: To gain more insight into HIE barriers and facilitators for ID patients in GP care.

Methods: A qualitative study exploring GP consultation experiences of people with ID (n = 35), professional carers (n = 20) and relatives (n = 15). Transcripts from interviews and focus groups were analyzed using a framework analysis approach.

Results: Analyses resulted in four themes: (i) Recognizing patient health needs; (ii) Impaired doctor-patient communication; (iii) Carers' mediating roles during consultations; and (iv) Patients' autonomy and self-determination. Barriers related to communication skills, lack of time, continuity of carers and physicians, information alignment between relative or professional carer and the GP, and information transfer and recording within the patient network. Facilitating factors related mainly to carer interventions, personal connections with patients and GP communication with patients and carers outside the consultation.

Conclusion: There is considerable HIE potential in patients themselves, as well as in their network, although many barriers have to be overcome to profit from this. GP practices are recommended to adjust consultations and communication practices and to facilitate deployment of the patient's network, while still considering patient autonomy.
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http://dx.doi.org/10.1093/fampra/cmw057DOI Listing
October 2016

Beyond bridging the know-do gap: a qualitative study of systemic interaction to foster knowledge exchange in the public health sector in The Netherlands.

BMC Public Health 2015 Sep 19;15:922. Epub 2015 Sep 19.

Health and Society Group, Department of Social Sciences, Wageningen University, Hollandseweg 1, 6706 KN, Wageningen, The Netherlands.

Background: Despite considerable attention currently being given to facilitating the use of research results in public health practice, several concerns remain, resulting in the so-called know-do gap. This article aims to identify the key tensions causing the know-do gap from a broad perspective by using a systemic approach and considering the public health sector as an innovation system.

Methods: An exploratory qualitative design including in-depth semi-structured interviews was used, with 33 interviewees from different actor categories in the Dutch public health innovation system. The analyses employed an innovation system matrix to highlight the principal tensions causing the know-do gap.

Results: Seven key tensions were identified, including: research priorities determined by powerful players; no consensus about criteria for knowledge quality; different perceptions about the knowledge broker role; competition engendering fragmentation; thematic funding engendering fragmentation; predominance of passive knowledge sharing; and lack of capacity among users to use and influence research.

Conclusions: The identified tensions indicate that bridging the know-do gap requires much more than linking research to practice or translating knowledge. An innovation system perspective is crucial in providing information on the total picture of knowledge exchange within the Dutch public health sector. Such a system includes broader stakeholder involvement as well as the creation of social, economic, and contextual conditions (achieving shared visions, building networks, institutional change, removing financial and infrastructural barriers), as these create conducive factors at several system levels and induce knowledge co-creation and innovation.
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http://dx.doi.org/10.1186/s12889-015-2271-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4575438PMC
September 2015

Active involvement of people with intellectual disabilities in health research - A structured literature review.

Res Dev Disabil 2015 Oct-Nov;45-46:271-83. Epub 2015 Aug 26.

Radboud university medical center, Department of Primary and Community Care - Intellectual Disabilities and Health, P.O. Box 9101 (route 68), 6500 HB Nijmegen, The Netherlands. Electronic address:

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.
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http://dx.doi.org/10.1016/j.ridd.2015.08.004DOI Listing
August 2016

Health inequity in people with intellectual disabilities: from evidence to action applying an appreciative inquiry approach.

J Appl Res Intellect Disabil 2015 Jan;28(1):3-11

Department of Primary and Community Care - Intellectual Disabilities and Health, Radboud University Medical Center, HB Nijmegen, The Netherlands.

Background: The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops.

Materials And Methods: The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach.

Results: A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how and visibility and a pervasive theme, that of person-centered support.

Conclusion: Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required.
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http://dx.doi.org/10.1111/jar.12130DOI Listing
January 2015

Editorial: Health inequity: from evidence to action.

J Appl Res Intellect Disabil 2015 Jan;28(1):1-2

Centre for Disability Studies, School of Psychology, University College Dublin, Dublin 4, Ireland.

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http://dx.doi.org/10.1111/jar.12136DOI Listing
January 2015

[Nothing about us without us: health care research with people with intellectual disabilities].

Ned Tijdschr Geneeskd 2014 ;158:A8004

Radboudumc, afd. Eerstelijnsgeneeskunde, Nijmegen.

While the patients' perspective has been included in health care research, the participation of people with intellectual disabilities in research on their health has been limited, and considered to be difficult. However, they are vulnerable and experience more health problems than the general population. Legal issues regarding inclusion of people with intellectual disabilities are clarified in international and Dutch law, and should be respected. Aside from the legally responsible persons, various other stakeholders also play a role, which should be realized and considered when developing research plans. Inclusion of people with intellectual disabilities themselves in research, not only as subjects but also as advisors, researchers and decision-makers could make research more relevant and attractive for themselves, for health practice and for the research community.
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June 2015

Topics, methods and challenges in health promotion for people with intellectual disabilities: a structured review of literature.

Res Dev Disabil 2013 Dec 23;34(12):4534-45. Epub 2013 Oct 23.

Radboud University Medical Centre, Department of Primary and Community Health Care, Nijmegen, The Netherlands. Electronic address:

People with intellectual disabilities (ID) experience substantial health inequities compared, with the general population. Many secondary conditions and lifestyle related health problems could be, prevented with adequate health promotion. The aim of this structured review is to provide insight into, the main characteristics of published health promotion intervention studies for people with ID and, in, doing so, to identify best practice and knowledge gaps. Relevant studies were identified through a, structured literature search of multiple electronic databases (PubMed, CINHAS, Scopus, PsychINFO), the search strategy covered health promotion and intellectual disabilities for available papers, published between February 2002 and 2012. In total, 25 studies were included and analyzed. Overall, studies were diverse and explored a variety of health issues. Papers included a variety of participants (in relation to level of disability) and intervention approaches. With regard to quality, many studies, failed to report how they recruited their participants, and there were substantial challenges identified, by authors in relation to recruitment, implementation of interventions, and the selection of outcome, measures used as well as the usability of measures themselves. Our findings suggest that this field, experiences methodological weaknesses and inconsistencies that make it difficult to compare and, contrast results. Theoretically driven studies that take into account the views and expectations of, participants themselves are needed, as is research that investigates the reliability and validity of, outcome measures for the ID population. Collaboration with mainstream health promotion research is, critical.
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http://dx.doi.org/10.1016/j.ridd.2013.09.029DOI Listing
December 2013

A response to Cosco, Blossom, and Brayne.

J Appl Gerontol 2013 Apr;32(3):277-9

Unversity medical centre St. Radboud, Department of Primary and Community Care, Nijmegen, Netherlands.

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http://dx.doi.org/10.1177/0733464813481561DOI Listing
April 2013

Neighbors Connected: the interactive use of multi-method and interdisciplinary evidence in the development and implementation of neighbors connected.

Glob Health Promot 2011 Mar;18(1):27-30

GGD Gelre-IJssel (Community Health Service), Appledorn, the Netherlands.

Neighbors Connected is a community-based intervention in the Netherlands. It helps the active older people to organize social activities for their less active older neighbors, facilitated by practical and financial support from the Community Health Service. The intervention is the outcome of a combination of semi-structured interviews with the older people, with organizations for older people and with local policy-makers, epidemiological data and interactive discussions, all of which support the notion that engaging in social activities is a way to enhance healthy ageing within the community. The use of different sources of evidence resulted in a comprehensive picture and actionable local knowledge.
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http://dx.doi.org/10.1177/1757975910393167DOI Listing
March 2011

Psychometric properties of the OLQ-13 scale to measure Sense of Coherence in a community-dwelling older population.

Health Qual Life Outcomes 2011 May 23;9:37. Epub 2011 May 23.

Health and Society group, Wageningen University, The Netherlands.

Background: With the ongoing demographic shift, the quality of life and health promotion among older individuals are becoming increasingly important. Recent research suggests that Sense of Coherence positively affects quality of life. Hence, a valid and reliable measurement of Sense of Coherence is pivotal. The 13-item Orientation to Life Questionnaire (OLQ-13) can be used to measure Sense of Coherence. The purpose of the present study is to assess the psychometric properties, validity, and reliability, of the OLQ-13 in community-dwelling individuals, aged 65 and older.

Methods: The OLQ-13 scale was administered as part of a healthy aging project for non-institutionalized people aged 65 years and older. Internal consistency and reliability were assessed by means of inter-item and test-halves correlations and Cronbach's alpha. Construct validity was explored using cluster analysis and exploratory factor analysis (n = 703) and tested using confirmatory factor analysis on a separate subset of individuals (n = 658). Item face validity was investigated by means of 12 semi-structured interviews.

Results: The reliability and the validity of the OLQ-13 in this population of non-institutionalized individuals aged 65 years and older was ambiguous, at least partly due to the poor performance of two items (b and d), which was confirmed by results from the qualitative part of this study. The psychometric properties of the proposed OLQ-11, obtained by deleting the two items, were better. In particular, the interpretation of exploratory factor solution improved. Whereas the underlying theoretical constructs could not be linked to the exploratory analyses of OLQ-13, this was to some extent possible in OLQ-11. The superior validity of OLQ-11 over OLQ-13 was supported by the better model fit in the confirmatory factor analysis.

Conclusions: The present mixed-method study suggests the proposed OLQ-11 as a more suitable instrument for measuring Sense of Coherence than the OLQ-13 in a population of ageing individuals. This study confirms that the validity and reliability of OLQ-13 may differ substantially in different populations.
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http://dx.doi.org/10.1186/1477-7525-9-37DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3120634PMC
May 2011

Healthy ageing in a salutogenic way: building the HP 2.0 framework.

Health Soc Care Community 2011 Jan 29;19(1):43-51. Epub 2010 Sep 29.

GGD Gelre-IJssel (Community Health Service), AGORA Academic Collaborative Centre, Apeldoorn, The Netherlands.

Healthy ageing is influenced by a variety of interacting determinants. Because no one agency can tackle all these determinants, the promotion of healthy ageing requires an intersectoral approach. The aim of this article is to describe a theoretical basis, the development and possible applications of a framework within a municipality in the Netherlands. This framework supports intersectoral collaboration by guiding and stimulating the development, implementation and evaluation of health promotion activities for healthy ageing. It is based on the principles of health promotion and on the theory of salutogenesis and built upon three interrelated central concepts: (1) sense of coherence, (2) resources for health, and (3) health. The framework visualises the interrelationships of the three concepts within health promotion and salutogenesis. This visualisation makes explicit the value and the contribution with respect to content of intersectoral collaboration and the participation of older people in health promotion. The relationships between the concepts of the framework also indicate the need to undertake different types of research and gather different kinds of data to develop, implement and evaluate healthy ageing strategies.
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http://dx.doi.org/10.1111/j.1365-2524.2010.00947.xDOI Listing
January 2011

Elaborating on systems thinking in health promotion practice.

Glob Health Promot 2009 Mar;16(1):39-47

Wageningen UR, Department of Social Sciences, Division Public Health and Society, Wageningen, The Netherlands.

Health and well-being are the result of a series of complex processes in which an individual interacts with other people and the environment. A systematic approach ensures incorporation of individual, ecological, social and political factors. However, interactions between these factors can be overlooked within a systematical approach. A systemic approach can provide additional information by incorporating interactions and communication. The opportunities of a systems thinking perspective for health promotion were investigated for this paper. Although others have also made attempts to explore systems thinking in the field of health promotion, the implications of systems thinking in practice need attention. Other fields such as agricultural extension studies, organizational studies and development studies provide useful experiences with the use of a systems thinking perspective in practice. Building on experiences from these fields, we give a theoretical background in which processes of social learning and innovation play an important role. From this background, we derive an overview of important concepts for the practical application of a systems thinking perspective. These concepts are the structure of the system, meanings attached to actions, and power relations between actors. To make these concepts more explicit and reduce the theoretical character of systems thinking, we use an illustration to elaborate on these concepts in practice. For this purpose, we describe a health promotion partnership in The Netherlands using the concepts structure, meaning and power relations. We show how a systems perspective increases insight in the functioning of a partnership and how this can facilitate processes of social learning and innovation. This article concludes by identifying future opportunities and challenges in adopting systems thinking for health promotion practice. A systems perspective towards health promotion can help projects reaching a more integral and sustainable approach in which the complex nature of health promotion processes is supported. Practical applications of systems thinking are necessary to adapt this perspective.
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http://dx.doi.org/10.1177/1757975908100749DOI Listing
March 2009
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