The Social Dimension of Quality of Life Following Spinal Cord Injury or Disease: An International ICF-linking Study.

Abstract Study design: International Classification of Functioning, Disability and Health (ICF) linking study. Objective: The International Spinal Cord Injury Quality of Life (QoL) Basic Data Set (QoL-BDS) consists of three items on satisfaction with life as a whole, physical health and psychological health. To examine the need for a fourth item on satisfaction with social life, the aim of this study was to explore aspects of social life relevant to QoL. Setting: four specialized outpatient clinics in SCI/D rehabilitation. Methods: Secondary analysis of data from 39 cognitive interviews with individuals with spinal cord injury or disease (SCI/D) for at least one year. Participants were asked to define their concept of QoL, their satisfaction with life as a whole, physical health and psychological health, and to comment on other issues relevant to their QoL. Coded text fragments were linked to the ICF using established linking rules. Fragments were considered to refer to social life if their content could be linked to ICF chapters d6-d9. Results: For responses to the items the rate of text referring to social life was 35.8%, 24.9%, 6.0% and 34.9% respectively. The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the ‘other issues’ item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency. Conclusion: Social life was relevant to QoL of people with SCI/D. Adding an satisfaction with social life item to the QoL-BDS would make this instrument a more comprehensive measure.