Evidence map›Paper›PMID 38877510›Full record

ArticleBMC health services research2024

Care needs of chronically ill patients with intellectual disabilities in Dutch general practice: patients' and providers' perspectives.

Milou van den Bemd, Monique Koks-Leensen, Maarten Cuypers, Geraline L Leusink, Bianca Schalk, Erik W M A Bischoff

Abstract read
In one paragraph

Article in BMC health services research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Distributed Health Literacy Among People With Intellectual Disability, Their Supporters and Healthcare Professionals: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Milou van den BemdDepartment of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands. milou.vandenbemd@radboudumc.nl.
Monique Koks-LeensenDepartment of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands.
Maarten CuypersDepartment of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands.
Geraline L LeusinkDepartment of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands.
Bianca SchalkDepartment of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands.
Erik W M A BischoffDepartment of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands.

Funding

Academic Collaborative Centers for Intellectual Disability of the Netherlands Organisation for Health Research and Development 641001100Ministerie van Volksgezondheid, Welzijn en Sport 329574
6 · The paper itself

Abstract

backgroundTo 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.

methodsThis 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.

resultsBetween 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.

conclusionsThis 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.

Indexed as

Focus GroupsGeneral PracticeIntellectual DisabilityQualitative ResearchAdultAgedAsthmaChronic DiseaseDiabetes Mellitus, Type 2FemaleHealth Services Needs and DemandHumansInterviews as TopicMaleMiddle AgedNeeds AssessmentCardiovascular diseaseChronic diseaseChronic obstructive pulmonary diseaseDelivery of healthcareDiabetes mellitusDisease managementGeneral practiceIntellectual disability

Identifiers

PMID38877510
PMCPMC11177393

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.