A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS)

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.

Purpose The AO Spine PROST (Patient Reported Outcome Spine Trauma) was developed for people with spine trauma and minor or no neurological impairment. The purpose is to investigate health professionals’ perspective on the applicability of the AO Spine PROST for people with motor-complete traumatic or non-traumatic spinal cord injury (SCI), using a discussion meeting and international survey study. Methods A discussion meeting with SCI rehabilitation physicians in the Netherlands was performed, followed by a worldwide online survey among the AO Spine International community, involved in the care of people with SCI. Participants rated the comprehensibility, relevance, acceptability, feasibility and completeness of the AO Spine PROST on a 1–5 point scale (5 most positive). Comments could be provided per question. Results The discussion meeting was attended by 13 SCI rehabilitation physicians. The survey was completed by 196 participants. Comprehensibility (mean ± SD: 4.1 ± 0.8), acceptability (4.0 ± 0.8), relevance (3.9 ± 0.8), completeness (3.9 ± 0.8), and feasibility (4.1 ± 0.7) of the AO Spine PROST were rated positively for use in people with motor-complete traumatic or non-traumatic SCI. Only a few participants questioned the relevance of items on the lower extremities (e.g., walking) or missed items on pulmonary functioning and complications. Some recommendations were made for improvement in instructions, terminology and examples of the tool. Conclusion Health professionals found the AO Spine PROST generally applicable for people with motor-complete traumatic or non-traumatic SCI. This study provides further evidence for the use of the AO Spine PROST in spine trauma care, rehabilitation and research, as well as suggestions for its further development.