OBJECTIVE: To develop a spinal cord injury (SCI)-specific patient-reported outcome (PRO) measure of health-related quality of life (QOL) covering multiple domains of functioning, including physical, emotional, and social health. DESIGN: Focus groups. SETTING: Four SCI Model Systems rehabilitation hospitals. PARTICIPANTS: Individuals with SCI (n=65) and clinicians (n=42). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Spinal Cord Injury Quality of Life Measurement System (SCI-QOL). RESULTS: Qualitative analysis yielded 3 domains of primary importance: physical-medical health, emotional health, and social participation. Results were used to guide domain and item decisions in the development of the SCI-QOL PRO measurement system. Qualitative data were used to develop item pools with item content specific to individuals with SCI across a wide spectrum of functioning. When possible, items from other major measurement initiatives were included verbatim in the item pools to link the measurement systems and facilitate cross-study and cross-population comparisons. CONCLUSIONS: Issues that affect individuals' QOL after SCI are varied and several issues are unique to individuals who have had a traumatic injury. From these qualitative data, 3 major domains and 18 subdomains of functioning were identified. Item pools were developed in each of these 18 areas to measure functioning related to physical-medical issues, emotional status, and social participation.
OBJECTIVE: To develop a spinal cord injury (SCI)-specific patient-reported outcome (PRO) measure of health-related quality of life (QOL) covering multiple domains of functioning, including physical, emotional, and social health. DESIGN: Focus groups. SETTING: Four SCI Model Systems rehabilitation hospitals. PARTICIPANTS: Individuals with SCI (n=65) and clinicians (n=42). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Spinal Cord Injury Quality of Life Measurement System (SCI-QOL). RESULTS: Qualitative analysis yielded 3 domains of primary importance: physical-medical health, emotional health, and social participation. Results were used to guide domain and item decisions in the development of the SCI-QOL PRO measurement system. Qualitative data were used to develop item pools with item content specific to individuals with SCI across a wide spectrum of functioning. When possible, items from other major measurement initiatives were included verbatim in the item pools to link the measurement systems and facilitate cross-study and cross-population comparisons. CONCLUSIONS: Issues that affect individuals' QOL after SCI are varied and several issues are unique to individuals who have had a traumatic injury. From these qualitative data, 3 major domains and 18 subdomains of functioning were identified. Item pools were developed in each of these 18 areas to measure functioning related to physical-medical issues, emotional status, and social participation.
Authors: F Biering-Sørensen; S Alai; K Anderson; S Charlifue; Y Chen; M DeVivo; A E Flanders; L Jones; N Kleitman; A Lans; V K Noonan; J Odenkirchen; J Steeves; K Tansey; E Widerström-Noga; L B Jakeman Journal: Spinal Cord Date: 2015-02-10 Impact factor: 2.772
Authors: Claire Z Kalpakjian; Jodi M Kreschmer; Mary D Slavin; Pamela A Kisala; Elisabeth H Quint; Nancy D Chiaravalloti; Natalie Jenkins; Tamara Bushnik; Dagmar Amtmann; David S Tulsky; Roxanne Madrid; Rebecca Parten; Michael Evitts; Carolyn L Grawi Journal: J Womens Health (Larchmt) Date: 2020-05-19 Impact factor: 2.681
Authors: Noelle E Carlozzi; Denise Fyffe; Kel G Morin; Rachel Byrne; David S Tulsky; David Victorson; Jin-Shei Lai; Jill M Wecht Journal: Arch Phys Med Rehabil Date: 2013-03-14 Impact factor: 3.966