BACKGROUND: It is difficult to diagnose constipation for people with severe or profound intellectual disabilities. Definitions for this are ambiguous, and the symptoms and signs are often unnoticed. The aim of this study is to identify clear definitions of constipation for people with different levels of intellectual disabilities and to identify signs and symptoms.METHOD: Guided by the PRISMA statement, a systematic review of the literature was conducted within electronic databases MEDLINE, Embase, CINAHL, Cochrane, and PsycINFO. Definitions, signs, and symptoms were extracted and the quality of definitions was assessed.RESULTS: In total, 24 studies were included. Quality of definitions ranged from poor to good quality. Standard and referenced definitions were used in ten studies, a self-composed definition was employed in eleven studies; and three studies did not refer to a source of the definition. The self-composed definitions had not been evaluated after being used for the target group, and no scientific substantiation was available. A broad range of signs and symptoms were described.CONCLUSIONS: No substantiated definition has been ascertained for constipation for people with severe or profound intellectual disabilities. Further research will be necessary to identify which signs and symptoms are important for defining constipation in this target group.
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Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. Aim: This Delphi study aims to compile a list of operationalized criteria and symptoms of constipation in people with SPIMD based on practical experiences of and consensus between experts supporting them. Methods: A two-round Delphi study with an intermediate evaluation and analyses was conducted. Parents and relatives of persons with SPIMD and support professionals were included. The panel answered statements and open questions about symptoms and criteria of constipation. They were also requested to provide their opinion about classifying criteria and symptoms into domains. Answers to statements were analysed separately after both rounds with regard to consensus rate and displayed qualitatively; answers to open questions were analysed deductively. Results: In the first Delphi round (n = 47), consensus was achieved on criteria within the domains 'Defecation’ and 'Physical features', that were assigned to broader categories. Symptoms retrieved within the domain ‘Behavioural/Emotional’ were brought back to the panel as statements. After the second Delphi round (n = 38), consensus was reached on questions about domains, and for eight criteria (domain ‘Defecation’ n = 5; domain ‘Physical features n = 3). Within the domain ‘Behavioural/Emotional’, consensus was achieved for five symptoms. Criteria and symptoms with consensus >70% were considered ‘generic’ and
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Inleiding: Bij mensen met verstandelijke beperkingen (VB) is obstipatie een van de meest voorkomende gezondheidsproblemen en de gevolgen kunnen groot zijn. Dit onderzoek beoogt een overzicht te geven van de prevalentie van, risicofactoren voor en (niet-)medicamenteuze behandeling van obstipatie bij mensen met VB. Daarnaast wordt de relatie tussen obstipatie, dysfagie en medicatie geanalyseerd.Methode: Het onderzoek bestond uit literatuur- en dossieronderzoek. Voor het systematische literatuuronderzoek werden de databases PubMed en Scopus doorzocht. Het dwarsdoorsnede (cross-sectionele) dossieronderzoek werd uitgevoerd bij zorginstelling Alliade. Data over aanwezigheid van obstipatie, laxantiagebruik, inzet van niet-medicamenteuze behandelingen en risicofactoren, waaronder dysfagie en medicatiegebruik, werden verzameld.Resultaten: De literatuur toonde sterk variërende obstipatie-prevalenties van 6 tot 94%. Het dossieronderzoek liet zien dat 24,3% van de cliënten een obstipatiediagnose heeft en 55% chronisch laxantia gebruikt. Risicofactoren voor obstipatie werden in de literatuur weinig gevonden. Risicofactoren gevonden in de dossiers waren mate VB, dysfagie en medicatie. Niet-medicamenteuze behandelingen voor obstipatie werden zelden gerapporteerd en betroffen fysiotherapeutische behandelingen, buikmassage en voedingssupplementen. Conclusie: De prevalentie van obstipatie en chronisch laxantiagebruik bleek hoog. Er is nog veel onduidelijk over risicofactoren en over de inzet van alternatieve behandelmethoden naast laxantia. Gezien de grote impact die obstipatie kan hebben op mensen met VB is verder onderzoek naar deze aandoening en de behandelmethoden wenselijk.
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