Development of the international spinal cord injury psychological functioning basic data set

STUDY DESIGN: Consensus exercise, narrative review.

OBJECTIVES: To create an International Spinal Cord Injury Psychological Functioning Basic Data Set (PSYCHBDS).

SETTING: International working group.

METHODS: Online meetings and email communications throughout 2020-2022. The authors reviewed measures used by SCI rehabilitation psychologists and reported in the literature. Selected measures and their psychometric properties were described. Consensus was reached on the measures and other data elements to include in the PSYCHBDS. The draft-PSYCHBDS was further reviewed by members of the International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, individual reviewers and societies, and posted on the ASIA and ISCoS websites for 1 month to elicit comments before final approval by ASIA and ISCoS.

RESULTS: The group agreed to restrict the scope of the PSYCHBDS to the domains of anxiety and depressed mood and to use the 2-item versions of the Patient Health Questionnaire (PHQ) and the Generalized Anxiety Disorder (GAD). The PSYCHBDS consists of six standard and three optional data elements: date of data collection, professional background of data collector (optional), presence of psychological disorders before the onset of SCI, administration mode, PHQ-2 score, PHQ-9 score (optional), GAD-2 score, GAD-7 score (optional), and therapy for current psychological disorders. A data collection form and scoring instructions were developed.

CONCLUSIONS: An international working group of experts achieved consensus on a data set to collect basic information on psychological factors and recommends its use in SCI/D rehabilitation and research.