BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans.METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded.RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux.CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
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
Background: Dysphagia is potentially life‐threatening and highly prevalent in people with severe/profound intellectual and multiple disabilities (SPIMD). The “Signaleringslijst Verslikken” (SV) is a frequently used Dutch screening tool to detect dysphagia. The aim was to examine the convergent validity of the SV for people with SPIMD. Method: Direct support staff completed the SV, with speech and language therapists scoring a validated tool, the Dysphagia Disorders Survey (DDS), for 41 persons with SPIMD, aged ≥50 years. The results were compared for agreement using the McNemar's Test. Results: The proportion of agreement was 0.59 (95% CI 0.43–0.72). The SV did not detect dysphagia in 17 participants (44%) who were assessed as having dysphagia according to the DDS. The difference in proportion of detection of dysphagia between the two methods was significant (p < 0.0001). Conclusions: The results suggest that the convergent validity of the SV is insufficient: the SV is not sensitive for detecting dysphagia in people with SPIMD.
