title: Impact of blood pressure dysregulation on health-related quality of life in persons with spinal cord injury: development of a conceptual model.
abstract: OBJECTIVE
  To identify medically relevant aspects of blood pressure dysregulation (BPD) related to quality of life in individuals with spinal cord injury (SCI), and to propose an integrated conceptual framework based on input from both individuals with SCI and their clinical providers. This framework will serve as a guide for the development of a patient-reported outcome (PRO) measure specifically related to BPD.
  
  
  METHODS
  Three focus groups with individuals with SCI and 3 groups with SCI providers were analyzed using grounded-theory based qualitative analysis to ascertain how blood pressure impacts health-related quality of life (HRQOL) in individuals with SCI.
  
  
  METHODS
  Focus groups were conducted at 2 Veterans Affairs medical centers and a research center.
  
  
  METHODS
  Individuals with SCI (n=27) in 3 focus groups and clinical providers (n=25) in 3 focus groups.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  Not applicable.
  
  
  RESULTS
  Qualitative analysis indicated that all focus groups spent the highest percentage of time discussing symptoms of BPD (39%), followed by precipitators/causes of BPD (16%), preventative actions (15%), corrective actions (12%), and the impact that BPD has on social or emotional functioning (8%). While patient/consumer focus groups and provider focus groups raised similar issues, providers spent more time discussing precipitators/causes of BPD and preventative actions (38%) than patient/consumer groups (24%).
  
  
  CONCLUSIONS
  These results suggest that BPD uniquely and adversely impacts HRQOL in persons with SCI. While both individuals with SCI and their providers highlighted the relevant symptoms of BPD, the SCI providers offered additional detailed information regarding the precipitators/causes and what can be done to prevent/treat BPD. Further, the results suggest that persons with SCI are aware of how BPD impacts their HRQOL and are able to distinguish between subtle signs and symptoms. These findings exemplify the need for a validated and sensitive clinical measurement tool that can assess the extent to which BPD impacts HRQOL in patients with SCI.
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
authors.forename: Noelle E
authors.initials: NE
authors.lastname: Carlozzi
authors.forename: Denise
authors.initials: D
authors.lastname: Fyffe
authors.forename: Kel G
authors.initials: KG
authors.lastname: Morin
authors.forename: Rachel
authors.initials: R
authors.lastname: Byrne
authors.forename: David S
authors.initials: DS
authors.lastname: Tulsky
authors.forename: David
authors.initials: D
authors.lastname: Victorson
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.forename: Jill M
authors.initials: JM
authors.lastname: Wecht
mesh_terms: D000368:Aged; D001794:Blood Pressure / Q000502:physiology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D013119:Spinal Cord Injuries / Q000503:physiopathology* / Q000523:psychology*; D014481:United States; D014493:United States Department of Veterans Affairs
keywords: AD; BP; BPD; Blood pressure; EH; HRQOL; OH; Outcome assessment (health care); PRO; QOL; Quality of life; Rehabilitation; SCI; SCI-FI; SCI-QOL; Spinal Cord Injury Quality of Life Measurement System; Spinal Cord Injury-Functional Index; Spinal cord injuries; autonomic dysreflexia; blood pressure; blood pressure dysregulation; essential hypertension; health-related quality of life; orthostatic hypotension; patient-reported outcome; quality of life; spinal cord injury