Quality of life in patients with amyotrophic lateral sclerosis: Perceptions, coping resources, and illness characteristics

Journal of Palliative Medicine

Volumn 6, Issue 3, 2003, Pages 417-424

  Nelson, N D ^a,b   Trail, M ^a,b   Van, J N ^b   Appel, S H ^a   Lai, E C ^a,b  

^a BAYLOR COLLEGE OF MEDICINE   (United States)

^b MICHAEL E DEBAKEY VETERANS AFFAIRS MEDICAL CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CONTROLLED STUDY; COPING BEHAVIOR; DISEASE DURATION; DISEASE SEVERITY; FAMILY; FEMALE; FINANCE; HUMAN; MAJOR CLINICAL STUDY; MALE; PERSONALITY; QUALITY OF LIFE; QUESTIONNAIRE; RATING SCALE; RELIGION; SOCIAL PSYCHOLOGY; STRENGTH; STRESS; SYMPTOM;

EID: 0038355069     PISSN: 10966218     EISSN: None     Source Type: Journal    
DOI: 10.1089/109662103322144736     Document Type: Article

References (41)

1. Charcot JM: De la Sclerose laterale amyotrophique: Symptomatologie. Prog Med 1874;29:453-555.
2. Appel V, Stewart SS, Smith G, Appel SH: A rating scale for amyotrophic lateral sclerosis: Description and preliminary experience. Ann Neurol 1987;22:328-333.
3. Lai EC, Felice KJ, Festoff BW, Gawel MJ, Gelinas DF, Kratz R, Murphy MF, Natter HM, Norris FH, Rudnicki SA: Effect of recombinant human insulin-like growth factor-I on progression of ALS: A placebo-controlled study. Neurology 1997;49:1621-1630.
4. Lai, EC: Therapeutic developments in amyotrophic lateral sclerosis. Exp Opin Invest Drugs 1999;8:347-361.
5. Haverkamp LJ, Appel V, Appel SH: Natural history of amyotrophic lateral sclerosis in a database population: Validation of a scoring System and a model for survival prediction. Brain 1995;118:707-719.
6. Ganzini L, Johnston WS, Hoffman WF: Correlates of suffering in amyotrophic lateral sclerosis. Neurology 1999;52:1434-1440.
7. Carr AJ, Thompson PW, Kirwan JR: Quality of life measures. Br J Rheumatol 1996;35:275-281.
8. Swash M: Health outcome and quality-of-life measurements in amyotrophic lateral sclerosis. J Neurology 1997;244:S26-S29.
9. Baker GA: Health-related quality-of-life issues: Optimizing patient outcomes. Neurology 1995;45:S29-S34.
10. Guyatt GH: Measurement of health-related quality of life in heart failure. J Am Coll Cardiol 1993;22(suppl): 185A-191A.
11. Murphy R, Sackley CM, Miller P, Harwood RH: Effect of experience of severe stroke on subjective valuations of quality of life after stroke. J Neurol Neurosurg Psychiatry 2001;679-681.
12. Miller RG, Rosenberg JA, Gelinas D, Mitsumoto H, Newman D, Sufit R, Borasio GD, Bradley WG, Bromberg MB, Brooks BR, Kasarskis EJ, Munsat TL, Oppenheimer EA: Practice parameter: The care of the patient with amyotrophic lateral sclerosis (an evidence-based review). Neurology 1999;52:1311-1323.
13. Gill TM, Feinstein AR: A critical appraisal of the quality of quality-of-life measurements. JAMA 1994;272: 619-626.
14. Leplege A, Hunt S: The problem of quality of life in medicine. JAMA 1997;278:47-50.
15. Cohen SR, Mount BM, Tomas JN, Mount LF: Existential well-being is an important determinant of quality of life. Cancer 1996;77:576-586.
16. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S: Quality of life in ALS depends on factors other than strength and physical function. Neurology 2000;55:388-392.
17. Schrag A, Jahanshahi N, Quinn N: What contributes to quality of life in patients with Parkinson's disease? J Neurol Neurosurg Psychiatry 2000;69:308-312.
18. Testa MA, Simonson DC: Assessment of quality-of-life outcomes. New Engl J Med 1996;13:835-840.
19. Murphy S, Baker N, Ma H: Measuring quality of life. OT Practice 1999; Sept: 5-15.
20. Lacomblez L, Bensimon G, Leigh PN, Guillet P, Meininger V: Dose-ranging study of riluzole in amyotrophic lateral sclerosis. Lancet 1996;347:1425-1431.
21. The BDNF Study Group (Phase III): A controlled trial of recombinant methionyl human BDNF in ALS. Neurology 1999;52:1427-1433.
22. Miller RG, Anderson FA, Bradley WG, Brooks BR, Mitsumoto H, Munsat TL, Ringel SP: The ALS patient care database: Goals, design, and early results. Neurology 2000;54:53-57.
23. Bergner M, Bobbitt RA, Carter WB, Gibson BS: The Sickness Impact Profile: Development and final revision of a health status measure. Med Care 1981;19: 787-805.
24. McHorney CA, Ware JE, Lu J, Sherbourne CD: The MOS 36-item short form survey (SF-36): Tests of data quality-scaling assumptions, and reliability across diverse patient groups. Med Care 1994;32:40-66.
25. McGuire D, Garrison L, Armon C, Barohn R, Bryan W, Miller R, Parry G, Petajan J, Ross M: SSNJV/CNTF ALS Study Group. Relationship of the Tufts Quantitative Neuromuscular Exam (TQNE) and the Sickness Impact Profile (SIP) in measuring progression of ALS. Neurology 1996;46:1442-1444.
26. McGuire D, Garrison L, Armon C, Barohn RJ, Bryan WW, Miller R, Parry GJ, Petajan JH, Ross MA: A brief quality-of-life measure for ALS clinical trials based on a subset of items from the Sickness Impact Profile. J Neurol Sci 1997;152:S18-S22.
27. Shields RK, Ruhland JL, Ross MA, Saehler MM, Smith KB, Heffner ML: Analysis of health-related quality of life and muscle impairment in individuals with amyotrophic lateral sclerosis using the Medical Outcome Survey and the Tufts Quantitative Neuromuscular Exam. Arch Phys Med Rehabil 1998;79:855-862.
28. Jenkinson C, Fitzpatrick R, Brennan C, Swash M: Evidence for the validity and reliability of the ALS assessment questionnaire: The ALSAQ-40. ALS and other Motor Neuron Disorders 1999;1:33-40.
29. The ALS CNTF Treatment Study (ACTS) Phase I-II Study Group: The amyotrophic lateral sclerosis functional rating scale. Arch Neurol 1996;53:141-147.
30. Damiano AM, Patrick DA, Guzman GI, Gawel MJ, Gelinas DF, Natter HM, Ingalls KK: Measurement of health-related quality of life in patients with amyotrophic lateral sclerosis in clinical trials of new therapies. Med Care 1999;37:15-26.
31. Idler, EL: Religious involvement and the health of the elderly: Some hypothesis and an initial test. Social Forces 1987;66:226-228.
32. World Federation of Neurology Research Group on Neuromuscular Diseases. El Escorial World Federation of Neurology. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. J Neurol Sci 1994;124 (suppl):96-107.
33. Strauss A, Corbin J: Basis of Qualitative Research. Newbury Park: Sage, 1990.
34. Young JM, McNicoll P: Against all odds: Positive life experiences of people with advanced amyotrophic lateral sclerosis. Health and Social Work 1998;1:35-43.
35. Trail M, Nelson N, Van J, Appel S, Lai E: Wheelchair use by patients with amyotrophic lateral sclerosis: A survey of user characteristics and selection preferences. Arch Phys Med Rehabil 2001;82:98-102.
36. Rabkin JG, Wagner GJ, DelBene M: Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med 2000;62:271-279.
37. McDonald ER, Wiedenfeld SA, Hillel A, Carpenter CL, Walter RA: Survival in amyotrophic lateral sclerosis. Arch Neurology 1994;51:17-23.
38. Murphy PL, Albert SM, Weber CM, Del Bene ML, Rowland LP: Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology 2000;55:1581-1584.
39. Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S: Quality of life is maintained as physical health declines. Neurology 2001;56:442-444.
40. Smith PS, Crossley B, Greenberg J, Wilder C, Carroll B: Agreement among three quality of life measures in patients with ALS. ALS and Other Motor Neuron Disorders 2000;1:269-275.
41. Meyers AR, Gage H, Hendricks A: Health-related quality of life in neurology. Arch Neurol 2000;57:1224-1227.