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- Title
Do sociodemographic and clinical characteristics affect mortality rates in people with intellectual disability and dysphagia who have a percutaneous endoscopic gastrostomy? A cohort study between 2000 and 2022.
- Authors
Broad, Laura; Wee, Christine; Harries, Anthony D.
- Abstract
Background: People with intellectual disability frequently have eating, drinking and swallowing difficulties (dysphagia) and are at greater risk of premature mortality, particularly from aspiration and respiratory infections. The insertion of a percutaneous endoscopic gastrostomy (PEG), as part of a multidisciplinary management plan, may help to maintain and improve nutrition. This study included people with intellectual disability who had ever had a PEG inserted and who presented to the specialist Speech and Language Therapy team in one Greater Manchester borough between 2000 and 2022 and assessed the risk of death and sociodemographic and clinical factors associated with this. Methods: This was a cohort study using secondary data. Kaplan–Meier estimates were used to construct the probability of mortality curves. Cox proportional hazards were used to compare death rates in the different sociodemographic and clinical characteristic groups and were presented as hazard ratios and 95% confidence intervals. Findings: Of 42 people included in the study, 18 (43%) died from the point of PEG insertion to the end of the study (December 2022). The median (interquartile range) time to death from PEG insertion was 5 (2–10) years, with four people (10%) dying in the first year. Aspiration pneumonia and unspecified pneumonia were responsible for seven (39%) deaths. No significant associations were found between sociodemographic and clinical factors and risk of death. Conclusion: In persons with intellectual disability and a PEG who were followed up between 2000 and 2022, the mortality was around 40% with deaths occurring in the first year and respiratory conditions being an important cause. The lack of association with sociodemographic and clinical characteristics may have been due to a limited sample size. Further research is needed with larger samples and more variables, including quality of life data, to help understand and improve clinical practice in this area. Accessible Summaries: Percutaneous endoscopic gastrostomy (PEG) is a medical procedure that can be used in people with intellectual disability and eating, drinking and swallowing difficulties to help with maintaining and improving nutrition. Although this may have several health benefits, like all medical interventions, there are also risks both during and following the procedure.The study assessed people with intellectual disability who had a PEG in one Greater Manchester borough between 2000 and 2022 and aimed to look at their risk of death and what factors, if any, might affect this.Forty‐two people with intellectual disability were reviewed. Altogether, 18 (42%) of the people died, with four deaths occurring in the first year following the insertion of the PEG. The main cause of death was aspiration pneumonia. We found no relationship between family, social or clinical characteristics and risk of death.Further research is needed with larger samples of people with intellectual disability and more factors, including quality of life data. This may help services know how and when to use PEGs to help people with intellectual disability live healthier and longer lives.
- Subjects
ENGLAND; MORTALITY risk factors; RISK assessment; SECONDARY analysis; THERAPEUTICS; PROBABILITY theory; ASPIRATION pneumonia; SYMPTOMS; DESCRIPTIVE statistics; INTELLECTUAL disabilities; SURGICAL complications; LONGITUDINAL method; KAPLAN-Meier estimator; ENTERAL feeding; ENDOSCOPIC gastrointestinal surgery; GASTROSTOMY; SOCIODEMOGRAPHIC factors; CONFIDENCE intervals; DEGLUTITION; DEGLUTITION disorders; SPEECH therapy; PEOPLE with disabilities; HEALTH care teams; PROPORTIONAL hazards models; PATIENT aftercare
- Publication
British Journal of Learning Disabilities, 2024, Vol 52, Issue 2, p291
- ISSN
1354-4187
- Publication type
Article
- DOI
10.1111/bld.12579