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Health problems in children with profound intellectual and multiple disabilities: a scoping review
Lian M Zandbelt1, Esther J Bakker-van Gijssel1,2,3, Catelijne H Coppens1
1Department of Paediatrics, Radboud Institute for Health Sciences, Radboud University Medical Centre, Amalia Children's Hospital, Nijmegen, The Netherlands.
Insights
Children with profound intellectual and multiple disabilities (PIMD) experience numerous health issues, including epilepsy and respiratory infections. Further research is crucial to improve their medical care and quality of life.
Area of Science:
- Pediatric Health
- Disability Studies
- Medical Research
Background:
- Children with profound intellectual and multiple disabilities (PIMD) present complex health needs with severe intellectual and motor impairments.
- Care for these children is often fragmented, involving frequent hospital visits.
Purpose of the Study:
- To investigate and categorize the health problems experienced by children with profound intellectual and multiple disabilities (PIMD).
- To synthesize existing literature on the health conditions affecting this vulnerable population.
Main Methods:
- A comprehensive scoping review was conducted across five major electronic databases.
- Included studies focused on children with severe intellectual and motor impairments, analyzing reported health problems.
- Data extraction followed JBI checklist recommendations, categorizing health issues into 11 distinct groups.
Main Results:
- The review encompassed 22 studies involving 894 children with PIMD.
- Epilepsy, respiratory infections, feeding difficulties, GERD, scoliosis, and visual impairment were the most frequently reported health problems.
- Significant variability was observed in the definition and terminology used for PIMD across studies.
Conclusions:
- Existing research offers a broad overview but lacks depth in specific health problem areas for children with PIMD.
- Further investigation into the prevalence, onset, and optimal treatments for these health issues is essential.
- Early detection and management of health problems can significantly enhance medical care and the quality of life for children with PIMD.
Abstract:
This study aims to investigate and categorize health problems in children with profound intellectual and multiple disabilities (PIMD). We conducted a scoping review in five electronic databases (PubMed, Embase, Medline, PsychInfo, and Web of Science), including peer-reviewed studies that describe health problems in children with PIMD. Articles on PIMD were included when mentioning children with severe or profound intellectual disability (IQ/DQ < 35 or developmental age < 24 months) AND severe/profound motor impairment (GMFCS IV/V, non-ambulatory/not walking without support or gross motor function measure (GMFM-66) score < 40). Health problems were divided into 11 different categories based on literature and the experiences of the authors. Both health problems reported by caregivers and diagnosed by health professionals were included. A data extraction tool was developed using the JBI checklist recommendations. The review included 22 studies, with a total of 894 patients across all the articles. The most reported health problems in children with PIMD were epilepsy, respiratory infections, feeding difficulties, GERD, scoliosis, and visual impairment. There was no uniformity in the definition and terminology of PIMD.
Conclusion:
The studies in this review covered a wide range of health problems, with only a few focusing on the entire range. Given the lack of knowledge about children with PIMD, further research is required on the presence of health problems, the age of onset, and appropriate treatments. Awareness, early detection, and treatment of the health problems could optimize the medical care and quality of life of children with PIMD.
What Is Known:
• Children with profound intellectual and multiple disabilities (PIMD) have severe intellectual and motor disabilities and various comorbidities. • Children often visit the hospital and provided care is complex and fragmented.
What Is New:
• Children with PIMD develop a wide range of health problems; most reported are epilepsy, respiratory infections, and feeding difficulties. • Little is known about treatment of health problems in children with PIMD.
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