Impact of Surgical and Orthotic Intervention on the Quality of Life of People with Profound Intellectual and Multiple Disabilities and Their Carers

• Published in: Journal of applied research in intellectual disabilities Vol. 13; no. 4; pp. 216 - 238
• Main Authors: Neilson, Aileen, Hogg, James, Malek, Mo, Rowley, David
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Science Ltd 01.12.2000; Wiley Subscription Services, Inc
• Subjects: Intellectual disabilities; Patient satisfaction; Quality of life
• ISSN: 1360-2322; 1468-3148
• DOI: 10.1046/j.1360-2322.2000.00023.x

The increasing analysis of quality of life issues for people with disabilities has not been paralleled in relation to people with profound intellectual and multiple disabilities (PIMDs). This is nowhere more the case than with regard to the impact of health status on their quality of life. In addition, people with PIMDs, and the interventions which they require, have not been included within wider considerations of the economics of healthcare and its relation to rational decision‐making regarding medical provision. The present exploratory study considered the impact of a wide range of surgical and orthotic interventions on the quality of life of 27 children and adults with PIMDs. These were explored on a pre–post‐test basis with respect to: (1) the economic costs associated with surgical and orthotic interventions; (2) clinical assessment of function and behaviour; (3) the participants' and carers' quality of life; and (4) carer satisfaction with the interventions. The results are presented with respect to these individual areas and the extent to which the findings are congruent. The need for the development of these measures to meet the specific requirements of this population and the development of a more formal model integrating these steps are considered.