Quality of life in spinal cord injured individuals and their caregivers during the initial 6 months following rehabilitation
Tóm tắt
Addressing quality of life (QOL) issues in the spinal cord injured (SCI) population is imperative as the majority survive their initial injury and longevity now approaches that of the general population. The purpose of this mixed method, descriptive, longitudinal feasibility study was to describe and compare QOL in 10 adult SCI individuals and their family caregivers (FCs) during the initial 6 months following rehabilitation. Instruments used were the SF-36 and two horizontal visual analog scales, one for pain and one for QOL. Participants completed the instruments and a face-to-face in-depth interview at 1-, 3-, and 6-months following inpatient rehabilitation. SCI individuals reported low physical function, role physical (RP), and role emotional (RE) scores on the SF-36, while reporting high general health (GH), mental health and social functioning on the SF-36. FCs reported lower RP, GH and vitality scores, while reporting higher physical functioning and RE scores. On the visual analog scales, persons with SCI reported lower QOL while FCs reported more pain at 3 and 6 months. This study suggests that more work is needed to identify interventions which could enhance QOL during the transition from rehabilitation to home for SCI individuals and their FCs.
Tài liệu tham khảo
Network SCII. Spinal Cord Injury: Facts and Figures at a Glance. University of Alabama at Birmingham, 2001.
Treischmann RB. Spinal Cord Injuries: Psychological, Social and Vocational Rehabilitation. New York: Demos, 1988.
Fuhrer MJ. Subjective well-being: Implications for medical rehabilitation outcomes and models of disablement. Am J Phys Med Rehabil 1994; 73(5): 358-364.
Whiteneck GC. The 44th annual John Stanley Coulter Lecture. Measuring what matters: Key rehabilitation outcomes. Arch Phys Med Rehabil 1994; 75(10): 1073-1076.
Whiteneck GG. Evaluating outcome after spinal cord injury: What determines success? J Spinal Cord Med 1996; 20(2): 179-185.
Meyers AR, Andreson EM. Enabling our instruments: Accomodation, universal design, and access to participation in research. Arch Phys Med Rehabil 2000; 81(Suppl 2): S5-S9.
Andresen EM. Criteria for assessing the tools of disability outcomes research. Arch Phys Med Rehabil 2000; 81(Suppl 2): S15-S20.
Dijkers M. Measuring quality of life: Methodological issues. Am J Phys Med Rehabil 1999; 78(3): 286-300.
Cushman LA, Hassett J. Spinal cord injury: 10 and 15 years after. Paraplegia 1992; 30(10): 690-696.
Siösteen A, et al. The quality of life of three functional spinal cord injury subgroups in a Swedish community. Paraplegia 1990; 8: 467-488.
Krause JS. Aging and life adjustment after spinal cord injury. Spinal Cord 1998; 36: 320-328.
Dowler R, et al. Impact of demographic and medical factors on satisfaction with life after spinal cord injury: A normative study. J Spinal Cord Med 2001; 24: 87-91.
Fuhrer MJ, et al. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil 1992; 73: 552-557.
Granger CV, et al. Functional assessment scales: A study of persons with multiple sclerosis. Arch Phys Med Rehabil 1993; 74: 133-138.
Dunn M, Love L, Ravesloot C. Subjective health in spinal cord injury after outpatient healthcare follow-up. Spinal Cord 2000; 38(2): 84-91.
Tate DG, et al. Quality of life issues among women with physical disabilities or breast cancers. Arch Phys Med Rehabil 1997; 78(12 Suppl 5): S18-S25.
Duggan CH, Dijkers M. Quality of life after spinal cord injury: A qualitative study. Rehabil Psychol 2001; 46(1): 3-27.
Abela MB, Dijkers M. Predicting life satisfaction among spinal cord injured patients one to three years post-injury. J Am Paraplegia Soc 1994; 17(2): 118-121.
Clayton KS, Chubon RA. Factors associated with the quality of life of long-term spinal cord injured persons. Arch Phys Med Rehabil 1994; 75: 633-638.
Riley BB, et al. Type of spiritual well-being among persons with chronic illness: Their relation to various forms of quality of life. Arch Phys Med Rehabil 1998; 79: 258-264.
Anke AG, Wagner SAE, Stanghelle JK. Pain and life quality within 2 years of spinal cord injury. Paraplegia 1995; 33: 555-559.
Lundqvist C, et al. Spinal cord injuries: Clinical, functional and emotional status. Spine 1991; 16: 78-83.
Richards JS, et al. Access to the environment and life satisfaction after spinal cord injury. Arch Phys Med Rehabil 1999; 80(11): 1501-1506.
Putzke JD, et al. Predictors of life satisfaction: A spinal cord injury cohort study. Arch Phys Med Rehabil 2002; 83: 555-561.
Pain K, et al. Quality of life: What does it mean in rehabilitation? J Rehabil 1998; 64(2): 5-13.
Kennedy P, Rogers B. Reported quality of life of people with spinal cord injuries: A longitudinal analysis of the first 6 months post-discharge. Spinal Cord 2000; 38: 498-503.
Meyers AR, Andresen EM, Hagglund KJ. A model of outcomes research: Spinal cord injury. Arch Phys Med Rehabil 2000; 81(2) (Suppl): S81-S90.
Stensman R. Adjustment totraumatic spinal cord injury: A longitudinal study of self-reported quality of life. Paraplegia 1994; 32: 416-422.
Stensman R. Severely mobility-disabled people assess the quality of their lives. Scand J Rehabil Med 1985; 17: 87-99.
DeVivo MJ, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia 1992; 30: 108-112.
Schulz R, Decker S. Long-term adjustment to physical disability — the role of social support, perceived control and self-blame. J Personal Soc Psychol 1985; 48(5): 1162-1172.
Yerxa EJ, Baum S. Engagement in daily occupations and life satisfaction among people with spinal cord injuries. Occup Ther J Res 1986; 6(5): 271-283.
Weitzenkamp DA, et al. Spouses of spinal cord injury survivors: The added impact of caregiving. Arch Phys Med Rehabil 1997; 78(8): 822-827.
Elliott TR, Shewchuk RM, Richards JS. Caregiver social problem-solving abilities and family member adjustment to recent-onset physical disability. Rehabil Psychol 1999; 44(1): 104-123.
Ünalan H, et al. Quality of life of primary caregivers of spinal cord injury survivors living in the community: Controlled study with Short Form-36 Questionnaire. Spinal Cord 2001; 39: 318-322.
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-46). Med care 1992; 30(6): 473-483.
Stewart AL, Hays RD, Ware JE Jr. The medical outcomes study short-form general health survey: Reliability and validity in a patient population. Med Care 1988; 26: 727-735.
Stewart AL, Ware JE Jr. Measuring Functioning and Well-being: The Medical Outcomes Study Approach. Durham, NC: Duke University Press, 1992.
Hays RD, Sherbourne CD, Mazel RM. The Rand 36-item health status survey 1.0. Health Econom 1993; 2: 217-227.
McHorney CA, et al. The validity and relative percision of MOS short-and long-form health status scales and Dartmouth COOP charts. Med Care, 1992; 30(Suppl): MS253-MS265.
VanderZee KI, Sanderman R, Heyink J. A comparison of two multidimensional measures of health status: The Nottingham Health Profile and the RAND 36-Item Health Survey. Qual Life Res 1996; 5(1): 165-174.
Waltz CF, Strickland OL, Lenz ER. Measurement in nursing research. 2nd ed., Philadelphia: F.A. Davis Company, 1991.
Schanke A, et al. Mild versus severe fatigue in polio survivors: Special characteristics. J Rehabil Med 2002; 34(3): 134-140.
Westgren N, Levi R. Quality of life and traumatic spinal cord injury. Arch Phys Med Rehabil 1998; 79(11): 1433-1439.
Lohr KN, et al. Evaluating quality of life and health status instruments: Development of scientific review criteria. Clin Therap 1996; 18(5): 979-992.
Andresen EM, et al. Performance of health-related quality-of-life instruments in a spinal cord injured population. Arch Phys Med Rehabil 1999; 80: 877-884.
Andresen EM, Meyers AR. Health related quality of life outcome measures. Arch Phys Med Rehabil 2000; 81(12 S2): S30-S45.
Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey: Manual and Interpretation Guide. 2nd ed., Boston, MA: The Health Institute, New England Medical Center, 1997.
Brown KLG. Grief as a basic conditioning factor affecting the self-care agency and self-care of family caregivers of persons with neurotrauma. In Nursing. Wayne State University: Detroit, 1996; 465.
Holicky R, Charlifue S. Ageing with spinal cord injury: The impact of spousal support. Disability Rehabil 1999; 21(5/6): 250-257.
Morrison SA, Stanwyck DJ. The effect of shorter lengths of stay on functional outcomes of spinal cord injury rehabilitation. Topics Spinal Cord Injury Rehabil 1999; 4(4): 44-45.
Krause JS. Dimensions of subjective well-being after spinal cord injury: An empirical analysis by gender and race/ethnicity. Arch Phys Med Rehabil 1999; 79(8): 900-909.
Tate DG, Forchheimer M. Health-related quality of life and life satisfaction for women with spinal cord injury. Topics Spinal Cord Injury Rehabil 2001; 7(1): 1-15.