Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations
Open Access
- 27 July 2020
- journal article
- research article
- Published by Springer Science and Business Media LLC in BMC Health Services Research
- Vol. 20 (1), 1-15
- https://doi.org/10.1186/s12913-020-05492-z
Abstract
Insight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS. We conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations’ representatives in the Netherlands participated. Median and 75-percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants’ answers from the previous round. Participants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it. We unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients’ rights to relevant information have to be carefully balanced against providers’ entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.Other Versions
Funding Information
- Fonds NutsOhra (1403-029)
- Jeroen Bosch Hospital (n/a)
This publication has 42 references indexed in Scilit:
- Contributions of a specialty clinic for children and adolescents with Down syndromeAmerican Journal of Medical Genetics Part A, 2013
- Methods for the guideline-based development of quality indicators--a systematic reviewImplementation Science, 2012
- Using and Reporting the Delphi Method for Selecting Healthcare Quality Indicators: A Systematic ReviewPLOS ONE, 2011
- Structure, process or outcome: which contributes most to patients' overall assessment of healthcare quality?BMJ Quality & Safety, 2011
- Clinical practiceEuropean Journal of Pediatrics, 2010
- Prevalence of congenital heart defects and persistent pulmonary hypertension of the neonate with Down syndromeEuropean Journal of Pediatrics, 2010
- The Dutch Consumer Quality Index: an example of stakeholder involvement in indicator developmentBMC Health Services Research, 2010
- Multidisciplinary care of persons with Down syndrome in JerusalemInternational Journal on Disability and Human Development, 2008
- Sharing StoriesEvaluation & the Health Professions, 2005
- Perceived Behavioral Control, Self‐Efficacy, Locus of Control, and the Theory of Planned Behavior1Journal of Applied Social Psychology, 2002