Quality of life and measures of quality of life in patients with neuromuscular disorders

Muscle and Nerve

Volumn 46, Issue 1, 2012, Pages 9-25

  Burns, Ted M ^a   Graham, Christopher D ^b   Rose, Michael R ^c   Simmons, Zachary ^d  

^a UNIVERSITY OF VIRGINIA   (United States)

^b GUY S HOSPITAL   (United Kingdom)

^c KING S COLLEGE HOSPITAL   (United Kingdom)

^d PENN STATE COLLEGE OF MEDICINE   (United States)

Author keywords

Health related QOL; HRQOL; Neuromuscular disorders; QOL; Quality of life; Response shift

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; AMYOTROPHIC LATERAL SCLEROSIS QUESTIONNAIRE 40; ARTHRITIS IMPACT SCALE 1; BODY IMAGE; CLINICAL RESEARCH; DAILY LIFE ACTIVITY; DISEASE SEVERITY; ELECTROMYOGRAPHY; FATIGUE; FUNCTIONAL ASSESSMENT OF CANCER GYNECOLOGIC ONCOLOGY GROUP NEUROTOXICITY; HEALTH STATUS; HUMAN; HUMAN RELATION; INDEX OF DOMAIN SATISFACTION AND THE LIFE SATISFACTION INDEX A; INDIVIDUALIZED QUALITY OF LIFE QUESTIONNAIRE; MCGILL QUALITY OF LIFE QUESTIONNAIRE; MUSCLE WEAKNESS; MUSCULAR DYSTROPHY; MYASTHENIA GRAVIS; MYASTHENIA GRAVIS ACTIVITIES OF DAILY LIVING SCALE; MYESTHENIA GRAVIS QUALITY OF LIFE 15; MYOTONIA; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; NEUROMUSCULAR DISEASE; NOTTINGHAM HEALTH PROFILE; PAIN; PATIENT CARE; PATIENT SATISFACTION; PHARMACEUTICAL CARE; POLYNEUROPATHY; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; PSYCHOMETRY; QUALITY OF LIFE; RELIABILITY; REVIEW; SCHEDULE FOR THE EVALUATION OF INDIVIDUAL QUALITY OF LIFE; SCHEDULE FOR THE EVALUATION OF INDIVIDUAL QUALITY OF LIFE DIRECT WEIGHTING FORM; SHORT FORM 36; SICKNESS IMPACT PROFILE; SOCIAL INTERACTION; VALIDITY;

ACTIVITIES OF DAILY LIVING; HEALTH STATUS; HUMANS; NEUROMUSCULAR DISEASES; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES;

EID: 84862328289     PISSN: 0148639X     EISSN: 10974598     Source Type: Journal    
DOI: 10.1002/mus.23245     Document Type: Review

References (162)

1. World Health Organization. The World Health Organization Quality of Life Assessment. Field trial version for adults. Administration manual. Geneva: World Health Organization; 1995.
2. World Health Organization. WHOQOL: measuring quality of life. Geneva: World Health Organization; 1997.
3. Burns TM, Conaway MR, Cutter GR, Sanders DB. Less is more, or almost as much: a 15-item quality-of-life instrument for myasthenia gravis. Muscle Nerve 2008; 38: 957-963.
4. Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQOL. Balancing the physical and nonphysical factors in assessing the quality of life in ALS. Neurology 2006; 67: 1659-1664.
5. Cella DF, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology 1990; 4: 29-38.
6. Hanestad B. Errors of measurement affecting the reliability and validity of data acquired from self-assessed quality of life. Scand J Caring Sci 1990; 4: 29-30
7. Ware JE, Sherbourne CD. The MOS 36-item Short-Form Health Survey (SF-36): I. Conceptual framework and item selection. Med Care 1992; 30: 473-483.
8. Ware J, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey. Manual and interpretation guide. Boston: The Health Institute, New England Medical Center; 1993.
9. Ware J, Kosinski M, Keller SD. SF-36 Physical and Mental Health Summary Scales: a user manual. Boston: The Health Institute, New England Medical Center; 1994.
10. Merkies ISJ, Schmitz PIM, van der Meche FGA, Samijn JPA, van Doorn PA, for the Inflammatory Neuropathy Cause and Treatment (INCAT) Group. Quality of life complements traditional outcome measures in immune-mediated polyneuropathies. Neurology 2002; 59: 84-91.
11. Merkies ISJ, Bril V, Dalakas MC, Deng C, Donofrio P, Hanna K, et al. Health-related quality-of-life improvements in CIDP with immune globulin IV 10%. Neurology 2009; 72: 1337-1344.
12. Merkies ISJ, Hughes RAC, Donofrio P, Bril MC, Hanna K, Hartung HP, et al. J Peripher Nerv Syst 2010; 15: 208-215.
13. van Nes SI, Faber CG, Merkies ISJ. Outcome measures in immune-mediated neuropathies: the need to standardize their use and to understand the clinimetric essentials. J Peripher Nerv Syst 2008; 13: 136-147.
14. Harbo T, Andersen H, Overgaard K, Jakobsen J. Muscle performance relates to physical function and quality of life in long-term chronic inflammatory demyelinating polyradiculoneuropathy. J Peripher Nerv Syst 2008; 13: 208-217.
15. Hughes RAC, Bensa S, Willison H, van den Bergh P, Corni G, Illa I, et al. Ann Neurol 2001; 50: 195-201.
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. Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology 2001; 56: 442-444.
18. Chren MM, Lasek RJ, Sahay AP, Sands LP. Measurement properties of Skindex-16: a brief quality-of-life measure for patients with skin diseases. J Cutan Med Surg 2001; 5: 105-110.
19. Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19: 210-6.
20. Bourke SC, Bullock RE, Williams TL, Shaw PJ, Gibson GJ. Noninvasive ventilation in ALS: indications and effect on quality of life. Neurology 2003; 61: 171-177.
21. Slevin ML, Plant H, Lynch D, Drinkwater J, Gregory WM. Who should measure quality of life, the doctor or the patient? Br J Cancer 1988; 57: 109-112.
22. Stenner PH, Cooper D, Skevington SM. Putting the Q into quality of life; the identification of subjective constructions of health-related quality of life using Q methodology. Soc Sci Med 2003; 57: 2161-2172.
23. Davis SE, Hynan LS, Limbers CA, Andersen CM, Greene MC, Varni JW, et al. The PedsQL in pediatric patients with Duchenne muscular dystrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core Scales. J Clin Neuromuscul Dis 2010; 11: 97-109.
24. Orcesi S, Gorni K, Rossi M, Berardinelli A, Ariudo G, Beghi E, et al. Importance of self-report in pediatric quality of life assessment: experience with the SOLE questionnaire in children with neuromuscular disorders. Neuromuscul Disord 2007; 17: 868-869.
25. U.S. Department of Health and Human Services. Food and Drug Administration. Guidance for Industry. Patient-reported outcome measures: use in medical product development to support labeling claims. Washington, DC: USHHS; 2009.
26. Felgoise SH, Stewart JL, Bremer BA, Walsh SM, Bromberg MB, Simmons Z. The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations. Amyotroph Lateral Scler 2009; 10: 456-462.
27. Burns TM, Grouse CK, Conaway MR, Sanders DB, and the MG Composite and MG-QOL15 Study Group. The MG-QOL15 for following the health-related quality of life for patients with myasthenia gravis. Muscle Nerve 2011; 43: 14-18.
28. Burns TM, Grouse CK, Conaway MR, Sanders DB, and the MG Composite and MG-QOL15 Study Group. Construct and concurrent validation of the MG-QOL15 in the practice setting. Muscle Nerve 2010; 41: 219-226.
29. Calman KC. Quality of life in cancer patients: a hypothesis. J Med Ethics 1984; 10: 124-247.
30. Sprangers MAG, Schwart CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 1999; 48: 1507-1515.
31. Bergner M, Bobbitt RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981; 19: 787-805.
32. McGuire D, Garrison L, Armon C, Barohn R, Bryan W, Miller R, et al. Relationship of the Tufts Quantitative Neuromuscular Exam (TQNE) and the Sickness Impact Profile (SIP) in measuring progression of ALS. Neurology 1996; 46: 1442-1444.
33. Borasio GD, Robberecht W, Leigh PN, Emile J, Guiloff RJ, Jerusalem F, et al. A placebo-controlled trial of insulin-like growth factor-I in amyotrophic lateral sclerosis. Neurology 1998; 51: 583-586.
34. Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med 2004; 7: 551-557.
35. Shields RK, Ruhland JL, Ross MA, Saehler MM, Smith KB, Heffner ML. Analysis of health-related qualify 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.
36. Yamaguchi T, Ohbu S, Saito M, Ito Y, Moriwaka F, Tashiro K, et al. Validity and clinical applicability of the Japanese version of Amyotrophic Lateral Sclerosis-Assessment Questionnaire 40 (ALSAQ-40) [in Japanese]. No Shinkei Brain Nerve 2004; 56: 483-494.
37. De Groot IJM, Post MWM, van Heuveln T, van den Berg LH, Lindeman E. Cross-sectional and longitudinal correlations between disease progression and different health-related quality of life domains in persons with amyotrophic lateral sclerosis. Amyotroph Lateral Scler 2007; 8: 356-361.
38. Jenkinson C, Fitzpatrick R, Swash M, Peto V, the ALS-HPS Steering Group. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol 2000; 247: 835-840.
39. The EuroQol Group. EuroQol-a new facility for the measurement of health related quality of life. Health Policy 1990; 16: 199-208.
40. Kiebert GM, Green C, Murphy C, Mitchell JD, O'Brien M, Burrell A, et al. Patients' health-related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis. J Neurol Sci 2001; 191: 87-93.
41. Green C, Kiebert G, Murphy C, Mitchell JD, O'Brien M, Burrell A, Leigh PN. Patients' health-related quality-of-life and health state values for motor neuron disease/amyotrophic lateral sclerosis. Qual Life Res 2003; 12: 565-574.
42. Lopez-Bastida J, Perestelo-Perez L, Monton-Alvarez F, Serrano-Aguilar P, Alfonso-Sanchez JL. Social economic costs and health-related qualify of life in patients with amyotrophic lateral sclerosis in Spain. Amyotroph Lateral Scler 2009; 10: 237-243.
43. McGuire D, Garrison L, Armon C, Barohn RJ, Bryan WW, Miller R, et al. 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( SUPPL): S18-S22.
44. Jenkinson C, Fitzpatrick R, Brennan C, Swash M. Evidence for the validity and reliability of the ALS Assessment Questionnaire: the ALSAQ-40. Amyotroph Later Scler 1999; 1: 33-40.
45. Jenkinson C, Levvy G, Fitzpatrick R, Garratt A. The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40): tests of data quality, score reliability and response rate in a survey of patients. J Neurol Sci 2000; 180: 94-100.
46. Jenkinson C, Fitzpatrick R. Reduced item set for the Amyotrophic Lateral Sclerosis Assessment Questionnaire: development and validation of the ALSAQ-5. J Neurol Neurosurg Psychiatry 2001; 70: 70-73.
47. Maessen M, Post MW, Maille R, Lindeman E, Mooij R, Veldink JH, et al. Validity of the Dutch version of the Amyotrophic Lateral Sclerosis Assessment Questionnaire, ALSAQ-40, ALSAQ-5. Amyotroph Lateral Scler 2007; 8: 96-100.
48. Salas T, Mora J, Esteban J, Rodriguez F, Diaz-Lobato S, Fajardo M. Spanish adaptation of the Amyotrophic Lateral Sclerosis Questionnaire ALSAQ-40 for ALS patients. Amyotroph Lateral Scler 2008; 9: 168-172.
49. Palmieri A, Soraru G, Lombardi L, D'Ascenzo C, Baggio L, Ermani M, et al. Quality of life and motor impairment in ALS: Italian validation of ALSAQ. Neurol Res 2010; 32: 32-40.
50. Carlson D. Speaking from experience: ALS patients can lead happy lives. RN 1995; 58: 10.
51. Abramson N. Quality of life: who can make the judgment? Am J Med 1996; 100: 365-366.
52. McDonald ER, Hillel A, Wiedenfeld SA. Evaluation of the psychological status of ventilatory-supported patients with ALS/MND. Palliat Med 1996; 10: 35-41.
53. Moss AH, Oppenheimer EA, Casey P, Cazzolli PA, Roos RP, Stocking CB, et al. Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation: advance care planning and outcomes. Chest 1996; 110: 249-255.
54. Kaub-Wittemer D, von Steinbuchel N, Wasner M, Laier-Groeneveld G, Borasio GD. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Sympt Manag 2003; 26: 890-896.
55. Bach JR, Barnett V. Ethical considerations in the management of individuals with severe neuromuscular disorders. Am J Phys Med Rehabil 1994; 73: 134-140.
56. Gerhart KA, Koziol-McLain J, Lowenstein SR, Whiteneck GG. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Ann Emerg Med 1994; 23: 807-812.
57. Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. BMJ 1997; 314: 1580-1583.
58. Olsson AG, Markhede I, Strang S, Persson LI. Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time. Acta Neurol Scand 2010; 121: 244-250.
59. Fowlie M, Berkeley J, Dingwall-Fordyce I. Quality of life in advanced cancer: the benefits of asking the patient. Palliat Med 1989; 3: 55-59.
60. Clipp EC, George LK. Patients with cancer and their spouse caregivers: perceptions of the illness experience Cancer 1992; 69: 1074-1079.
61. Sprangers MAG, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 1992; 45: 743-760.
62. Cohen SR, Mount BM, Strobel MG, Bui F. The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 1995; 9: 207-219.
63. Cohen SR, Hassan SA, Lapointe BJ, Mount BM. Quality of life in HIV disease as measured by the McGill Quality of Life Questionnaire. AIDS 1996; 10: 1421-1427.
64. Cohen SR, Mount BM, Tomas JJ, Mount LF. Existential well-being is an important determinant of quality of life. Cancer 1996; 77: 576-586.
65. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 1997; 11: 3-20.
66. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 2007; 68: 923-926.
67. Roach AR, Averill AJ, Segerstrom SC, Kasarskis EJ. The dynamics of quality of life in ALS patients and caregivers. Ann Behav Med 2009; 37: 197-206.
68. O'Boyle CA. The schedule for the evaluation of individual quality of life. Int J Mental Health 1994; 23: 3-23.
69. Hickey A, O'Boyle CA, McGee HM, Joyce CRB. The schedule for the evaluation of individual quality of life. In: Joyce CRB, McGee HM, O'Boyle CA, editors. Individual quality of life: approaches to conceptualisation and assessment. Amsterdam: Harwood; 1999. p 119-133.
70. Hickey AM, Bury G, O'Boyle CA, Bradley F, O'Reilly F, Shannon W. A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ 1996; 313: 29-33.
71. Browne JP, O'Boyle CA, McGee HM, McDonald NJ, Joyce CRB. Development of a direct weighting procedure for quality of life domains. Qual Life Res 1997; 6: 301-309.
72. McGee HM, O'Boyle CA, Hickey A, Joyce CRB, O'Malley K. Assessing the quality of life of the individual: the SEIQoL with a healthy and a gastroenterology unit population. Psychol Med 1991; 21: 749-759.
73. O'Boyle C, McGee H, Hickey A, O'Malley K, Joyce CRB. Individual quality of life in patients undergoing hip replacement. Lancet 1992; 339: 1088-1091.
74. Campbell S, Whyte F. The quality of life in cancer patients participating in phase I clinical trials using SEIQoL-DW. J Adv Nurs 1999; 30: 335-343.
75. Waldron D, O'Boyle CA, Kearny M, Moriarty M, Carney D. Quality-of-life measurement in advanced cancer: assessing the individual. J Clin Oncol 1999; 17: 3603-3611.
76. Prince PN, Gerber GJ. Measuring subjective quality of life in people with serious mental illness using the SEIQoL-DW. Qual Life Res 2001; 10: 117-122.
77. Coen R, O'Mahony D, O'Boyle C, Joyce CRB, Hiltbrunner B, Walsh JB, et al. Measuring the quality of life of dementia patients using the schedule for the evaluation of individual quality of life. Irish J Psychol 1993; 14: 154-163.
78. Hickey AM, O'Boyle CA, McGee HM, McDonald NJ. The relationship between post-trauma problem reporting and carer quality of life after severe head injury. Psychol Health 1997; 12: 737-751.
79. Lintern TC, Beaumont JG, Kenealy PM, Murrell RC. Quality of life (QoL) in severely disabled multiple sclerosis patients: comparison of three QoL measures using multidimensional scaling. Qual Life Res 2001; 10: 371-378.
80. Browne JP, O'Boyle CA, McGee HM, Joyce CRB, McDonald NJ, O'Malley K, et al. Individual quality of life in the healthy elderly. Qual Life Res 1994; 3: 235-244.
81. Clarke S, Hickey A, O'Boyle C, Hardiman O. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res 2001; 10: 149-158.
82. Bromberg MB, Forshew DA. Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology 2002; 58: 320-322.
83. Goldstein LH, Atkins L, Leigh PN. Correlates of quality of life in people with motor neuron disease (MND). Amyotroph Lat Scler Other Motor Neuron Disord 2002; 3: 123-129.
84. O'Doherty LJ, Hickey A, Hardiman O. Measuring life quality, physical function and psychological well-being in neurological illness. Amyotroph Lateral Scler 2010; 11: 461-468.
85. Walsh SM, Bremer BA, Felgoise SH, Simmons Z. Religiousness is related to quality of life in patients with ALS. Neurology 2003; 60: 127-1529.
86. Bremer BA, Simone A-L, Walsh S, Simmons Z, Felgoise SH. Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis; the role of positive self-perception and religiosity. Ann Behav Med 2004; 28: 119-125.
87. Felgoise S, Rodriguez J, Stephens H, Walsh S, Bremer B, Simmons Z. Validation of a shorter ALS-specific quality of life instrument: the ALSSQOL-R. Amyotroph Lateral Scler 2008; 9( SUPPL 1): 12-13.
88. Cupp J, Simmons Z, Berg A, Felgoise SH, Walsh SM, Stephens HE. Psychological health in patients with ALS is maintained as physical function declines. Amyotroph Lateral Scler 2011; 12; 290-296.
89. Wilson IB. Clinical understanding and clinical implications of response shift. Soc Sci Med 1999; 48: 1577-1588.
90. Carr AJ, Gibson B, Robinson PG. Measuring quality of life: is quality of life determined by expectations or experience? BMJ 2001; 322: 1240-1243.
91. Fegg MJ, Kogler M, Brandstatter M, Jox R, Anneser J, Haarmann-Doetkotte S, et al. Meaning in life in patients with amyotrophic lateral sclerosis. Amyotroph Lateral scler 2010; 11: 469-474.
92. van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, van der Graaff MM, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005; 65: 1264-1267.
93. Felgoise SH, Chakraborty BH, Bond E, Rodriquez J, Bremer BA, Walsh SM, et al. Psychological morbidity in ALS: the importance of psychological assessment beyond depression alone. Amyotroph Lateral Scler 2010; 11: 351-358.
94. O'Brien MR, Whitehead B, Jack BA, Mitchell JD. From symptom onset to diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers-a qualitative study. Amyotroph Lat Scler 2011; 12: 97-104.
95. Kalkman JS, Schillings ML, van der Werf SP, Padberg GW, Zwarts MJ, van Engelen BG, et al. Experienced fatigue in facioscapulohumeral dystrophy, myotonic dystrophy, and HMSN-I. J Neurol Neurosurg Psychiatry 2005; 76: 1406-1409.
96. Padua L, Aprile I, Frusciante R, Iannoccone E, Rossi M, Renna R, et al. Quality of life and pain in patients with facioscapulohumeral muscular dystrophy. Muscle Nerve 2009; 40: 200-205.
97. Abresch RT, Seyden NK, Wineinger MA. Quality of life. Issues for persons with neuromuscular diseases. Phys Med Rehabil Clin N Am 1998; 9: 233-248.
98. Ahlstrom G, Gunnarsson LG. Disability and quality of life in individuals with muscular dystrophy. Scand J Rehabil Med 1996; 28: 147-157.
99. Piccininni M, Falsini C, Pizzi A. Quality of life in hereditary neuromuscular diseases. Acta Neurol Scand 2004; 109: 113-119.
100. Natterlund B, Gunnarsson LG, Ahlstrom G. Disability, coping and quality of life in individuals with muscular dystrophy: a prospective study over five years. Disabil Rehabil 2000; 22: 776-785.
101. Boyer F, Morrone I, Laffont I, Dizien O, Etienne JC, Novella JL. Health related quality of life in people with hereditary neuromuscular diseases: an investigation of test-retest agreement with comparison between two generic questionnaires, the Nottingham Health Profile and the Short Form-36 items. Neuromuscul Disord 2006; 16: 99-106.
102. Drouet B, Le Loët X, Vittecoq O, Nouvet G, Genevout A, Lauret P, et al. A study of long-term survival, functional outcome and quality of life in patients with polymyositis or dermatomyositis. Rev Rhum Engl Ed 1996; 63: 321-330.
103. Peric' S, Rakocevic-Stojanovic V, Stevic Z, Basta S, Vujanac V, Marjanovic L, Lavrnic D. Health-related quality of life in patients with myotonic dystrophy type 1 and amyotrophic lateral sclerosis. Acta Neurol Belg 2010; 110: 71-77.
104. Sadjadi R, Rose MR, Muscle Study Group. What determines quality of life in inclusion body myositis? J Neurol Neurosurg Psychiatry 2010; 81: 1164-1166.
105. Graham CD, Rose MR, Grunfeld EA, Kyle SD, Weinman J. A systematic review of factors which affect quality of life in muscle disease. J Neurol 2011; 258: 1593.
106. Landgraf JL, Abetz L, Ware JE. The CHQ user's manual. Boston: The Health Institute, New England Medical Center; 1996.
107. Davis SE, Hynan LS, Limbers CA, Andersen CM, Greene MC, Varni JW, et al. The PedsQL in pediatric patients with Duchenne muscular dystrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core Scales. J Clin Neuromuscul Dis 2010; 11: 97-109.
108. Iannaccone ST, Hynan LS, Morton A, Buchanan R, Limbers CA, Varni JW. The PedsQL in pediatric patients with Spinal Muscular Atrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module. Neuromuscul Disord 2009; 19: 805-812.
109. Hundley JL, Carroll CL, Lang W, Sniveley B, Yosipovitch G, Feldman SR, et al. Cutaneous symptoms of dermatomyositis significantly impact patients' quality of life. J Am Acad Dermatol 2006; 54: 217-220.
110. Vincent KA, Carr AJ, Walburn J, Scott DL, Rose MR. Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology 2007; 68: 1051-1057.
111. Sansone VA, Panzeri M, Montanari M, Apolone G, Gandossini S, Rose MR, et al. Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases. Eur J Neurol 2010; 17: 1178-1187.
112. Grootenhuis MA, de Boone J, van der Kooi AJ. Living with muscular dystrophy: Health related quality of life consequences for children and adults. Health Qual Life Outcomes 2007; 5: 31.
113. Abresch RT, Carter GT, Jensen MP, Kilmer DD. Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease. Am J Hospice Palliat Med 2002; 19: 39-48.
114. Bronner IM, van der Meulen MF, de Visser M, Kalmijn S, van Vanrooij WJ, Voskuyl AE, et al. Long-term outcome in polymyositis and dermatomyositis. Ann Rheum Dis 2006; 65: 1456-1461.
115. Ford C, Kidd A, Hammond-Tooke G. Myotonic dystrophy in Otago, New Zealand. NZ Med J 2006; 119: U2145.
116. Bostrom K, Ahlstrom, G. Quality of life in patients with muscular dystrophy and their next of kin. Int J Rehabil Res 2005; 28: 103-109.
117. Antonini G, Soscia F, Giubilei F, De Carolis A, Gragnani F, Morino S, et al. Health-related quality of life in myotonic dystrophy type 1 and its relationship with cognitive and emotional functioning. J Rehabil Med 2006; 38: 181-185.
118. Oksuz C, Kilinc M, Yildirim SA. Predictors of health-related quality of life in adult ambulatory independence neuromuscular disease patients. Neurosciences 2009; 14: 355-359.
119. Ponyi A, Borgulya G, Constantin T, Vancsa A, Gergely L, Danko K. Functional outcome and quality of life in adult patients with idiopathic inflammatory myositis. Rheumatology 2005; 44: 83-88.
120. Sultan SM, Ioannou Y, Moss K, Isenberg DA. Outcome in patients with idiopathic inflammatory myositis: morbidity and mortality. Rheumatology 2002; 41: 22-26.
121. Kohler M, Clarenbach CF, Böni L, Brack T, Russi EW, Bloch KE. Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 2005; 172: 1032-1036.
122. Gibson B. Long-term ventilation for patients with Duchenne muscular dystrophy: physicians' beliefs and practices. Chest 2001; 119: 940-946.
123. Melo M, Lauriano V, Gentil V, Eggers S, Del Bianco SS, Gimenez PR, et al. Becker and limb-girdle muscular dystrophies: a psychiatric and intellectual level comparative study. Am J Med Genet Neuropsychiatric Genet 1995; 60: 33-38.
124. Bungener C, Jouvent R, Delaporte C. Psychopathological and emotional deficits in myotonic dystrophy. J Neurol Neurosurg Psychiatry 1998; 65: 353-356.
125. Paul RH, Nash JM, Cohen RA, Gilchrist JM, Goldstein JM. Quality of life and well-being of patients with myasthenia gravis. Muscle Nerve 2001; 24: 512-516.
126. Padua L, Evoli A, Aprile I, Caliandro P, Batocchi AP, Punzi C, et al. Myasthenia gravis outcome measure: development and validation of a disease-specific self-administered questionnaire. Neurol Sci 2002; 23: 59-68.
127. Rostedt A, Padua L, Stålberg EV. Correlation between a patient-derived functional questionnaire and abnormal neuromuscular transmission in myasthenia gravis patients. Clin Neurophys 2005; 116: 2058-2064.
128. Muscle Study Group. A trial of mycophenolate mofetil with prednisone as initial immunotherapy in myasthenia gravis. Neurology 2008; 71: 394-399.
129. Padua L, Evoli A, Aprile I, Caliandro P, Mazza S, Padua R, et al. Health-related quality of life in patients with myasthenia gravis and the relationship between patient-oriented assessment and conventional measurements. Neurol Sci 2001; 22: 363-369.
130. Mullins LL, Carpentier MY, Paul RH, Sanders DB and the Muscle Study Group. A disease-specific measure of quality of life for myasthenia gravis. Muscle Nerve 2008; 38: 947-956.
131. Pfeiffer G, Wicklein EM, Ratusinski T, Schmitt A, Kunze K, et al. Disability and quality of life in Charcot-Marie-Tooth disease type 1. J Neurol Neurosurg Psychiatry 2001; 70: 548-550.
132. Erdman PG, van Meeteren NLU, Kalmijn S, Wokke JHJ, Helders PJM, van den Berg LH. Functional health status of patients with chronic inflammatory neuropathies. J Peripher Nerv System 2005; 10: 181-189.
133. Bendow SJ, Wallymahmed ME, Macfarlane IA. Diabetic peripheral neuropathy and quality of life. Q J Med 1998; 91: 733-737.
134. Currie CJ, Poole CD, Woehl A, Morgan LI, Cawley S, Rousculp MD, et al. Diabetogia 2006; 49: 2272-2280.
135. Hadden RD, Sharrack B, Bensa S, Soudain SE, Hughes RA. Randomized trial of interferon beta-1a in chronic inflammatory demyelinating polyradiculoneuropathy. Neurology 1999; 53: 57-61.
136. Vickrey BG, Hays RD, Beckstrand M. Development of a health-related quality of life measure for peripheral neuropathy. Neurorehabil Neural Repair 2000; 4: 93-104.
137. Griffith KA, Merkies ISJ, Hill EE, Cornblath DR. Measures of chemotherapy-induced peripheral neuropathy: a systematic review of psychometric properties. J Peripher Nerv Syst 2010; 15: 314-325.
138. Chuyn DA, Melkus GD, Katten DM, Price WJ, Davey JA, Grey N, et al. The association of psychological factors, physical activity, neuropathy, and quality of life in type 2 diabetes. Biol Res Nurs 2006; 7: 279-288.
139. Cocito D, Paolasso I, Pazzaglia C, Tavella A, Poglio F, Ciaramitaro P, et al. Pain affects the quality of life of neuropathic patients. Neurol Sci 2006; 27: 155-160.
140. Teunissen LL, Eurelings M, Notermans NC, Hop JW, van Gijn J. Quality of life with axonal polyneuropathy. J Neurol 2000; 247: 195-199.
141. Padua L, Schenone A, Aprile I, Benedetti L, Caliandrom P, Tonali P, et al. Quality of life and disability assessment in neuropathy: a multicentre study. J Peripher Nerv Syst 2005; 10: 3-10.
142. Kim B-J, Park H-R, Roh HJ, Jeong D-S, Kim BS, Park K-W, et al. Chemotherapy-related polyneuropathy may deteriorate quality of life in patients with B-cell lymphoma. Qual Life Res 2010; 19: 1097-1103.
143. Galer BS, Gianas A, Jensen MP. Painful diabetic polyneuropathy: epidemiology, pain description, and quality of life. Diabetes Res Clin Pract 1999; 47: 123-128.
144. Vinik EJ, Hayes RP, Oglesby A, Bastyr E, Barlow P, Ford-Molvik SL, et al. The development and validation of the Norfolk QOL-DN, a new measure of patients' perception of the effects of diabetes and diabetic neuropathy. Diabetes Technol Ther 2005; 7: 497-508.
145. Vinik EJ, Paulson JF, Ford-Molvik SL, Vinik AI. German-translated Norfolk quality of life (QOL-DN) identifies the same factors as the English version of the tool and discriminates different levels of severity. J Diabetes Sci Tech 2008; 2: 1075-1086.
146. Chuyn DA, Melkus GD, Katten DM, Price WJ, Davey JA, et al. The association of psychological factors, physical activity, neuropathy, and quality of life in type 2 diabetes. Biol Res Nurs 2006; 7: 279-288.
147. Currie CJ, Poole CD, Woehl A, Morgan LI, Cawley S, Rousculp MD, et al. The health-related utility and health-related quality of life of hospital treated subjects with type 1 or type 2 diabetes with particular reference to differing severity of peripheral neuropathy. Diabetogia 2006; 49: 2272-2280.
148. Padua L, Aprile I, Cacallaro T, Pareyson D, Quattrone A, Rizzuto N, et al. Relationship between clinical examination, quality of life, disability and depression in CMT patients. Italian multicenter study. Neurol Sci 2008; 29: 157-162.
149. Padua L, Shy ME, Aprile I, Pareyson D, Quattrone A, Rizzuto N, et al. Correlation between clinical/neurophysiological findings and quality of life in Charcot-Marie-Tooth type 1A. J Peripher Nerv Syst 2008; 13: 64-70.
150. Bril V, England JD, Franklin GM, Backonja M, Cohen JA, Del Toro DR, et al. Evidence-based guideline: treatment of painful diabetic neuropathy-report of the American Association of Neuromuscular and Electrodiagnostic Medicine, The American Academy of Neurology, and the American Academy of Physical Medicine and Rehabilitation. Muscle Nerve 2011; 43: 910-917.
151. Ruhland JL, Shields RK. The effects of a home exercise program on impairment and health-related quality of life in persons with chronic peripheral neuropathies. Phys Ther 1997; 77: 1026-1039.
152. Molenaar DS, Vermeulen M, de Visser M, de Haan R. Impact of neurology signs and symptoms on functional status in peripheral neuropathies. Neurology 1999; 52: 151-156.
153. Garssen MPJ, Bussman JBJ, Schmitz PIM, Zandbergen A, Welter TG, Merkies ISJ, et al. Physical training and fatigue, fitness, and quality of life in Guillain-Barré syndrome and CIDP. Neurology 2004; 63: 2393-2395.
154. Vileikyte L, Peyrot M, Bundy EC, Rubin RR, Leventhal H, Mora P, et al. The development and validation of a neuropathy and foot ulcer specific Quality of Life Instrument. Diabetes Care 2003; 26: 2549-2555.
155. Arnold A, McEntagart M, Younger DS. Psychosocial issues that face patients with Charcot-Marie-Tooth disease: the role of genetic counseling. J Genet Counsel 2005; 14: 307-318.
156. Padua L, Pareyson D, Aprile I, Cavallaro T, Quattrone A, Rizzuto N, et al. Natural history of CMT1A including QOL: a 2-year prospective study. Neuromuscul Disord 2008; 18: 199-203.
157. Vinci P, Serrao M, Millul A, Deidda A, De Santis F, Capici S, et al. Quality of life in patients with Charcot-Marie-Tooth disease. Neurology 2005; 65: 922-924.
158. Micallef J, Attarian S, Dubourg O, Gounnad PM, Hogrel JY, Stojkovich T, et al. Effect of ascorbic acid in patients with Charcot-Marie-Tooth disease type 1A: a multicentre, randomised, double-blind, placebo-controlled trial. Lancet Neurol 2009; 8: 1103-1110.
159. Pareyson D, Reilly MM, Schenone A, Fabrize GM, Cavallero T, Santoro L, et al. Ascorbic acid in Charcot-Marie-Tooth disease type 1A (CMT-TRIAAL and CMT-TRAUK): a double-blind randomised trial. Lancet Neurol 2011; 10: 320-328.
160. Burns J, Ouvrier RA, Yiu EM, Joseph PD, Kornberg AJ, Fahey MC, et al. Ascorbic acid for Charcot-Marie-Tooth disease type 1A in children: a randomised, double-blind, placebo-controlled safety and efficacy trial. Lancet Neurol 2009; 8: 537-544.
161. Burns J, Ramchandren S, Ryan MM, Shy M, Ouvrier RA. Determinants of reduced health-related quality of life in pediatric inherited neuropathies. Neurology 2010; 75: 726-731.
162. Ramchandren S, Shy ME, Finkel RS. Quality of life in children with CMT type 1A. Lancet Neurol 2009; 8: 880-881.