Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): A systematic review of patient-reported outcome measures (PROMs)

Child: Care, Health and Development

Volumn 40, Issue 6, 2014, Pages 806-824

  Haywood, K L ^a   Collin, S M ^b   Crawley, E ^b  

^a UNIVERSITY OF WARWICK   (United Kingdom)

^b UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

Children; Chronic Fatigue Syndrome Myalgic encephalomyelitis (CFS ME); Patient reported outcomes; Systematic review

Indexed keywords

ADAPTIVE BEHAVIOR; CHECKLIST; CHILD; DAILY LIFE ACTIVITY; DOCTOR PATIENT RELATION; FATIGUE SYNDROME, CHRONIC; HUMAN; OUTCOME ASSESSMENT; PRACTICE GUIDELINE; PRESCHOOL CHILD; PSYCHOLOGY; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRE; SELF REPORT; SEVERITY OF ILLNESS INDEX; TREATMENT OUTCOME;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; CHECKLIST; CHILD; CHILD, PRESCHOOL; FATIGUE SYNDROME, CHRONIC; GUIDELINES AS TOPIC; HUMANS; OUTCOME ASSESSMENT (HEALTH CARE); PHYSICIAN-PATIENT RELATIONS; QUALITATIVE RESEARCH; QUALITY OF LIFE; SELF REPORT; SEVERITY OF ILLNESS INDEX; SURVEYS AND QUESTIONNAIRES; TREATMENT OUTCOME;

EID: 84908673215     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/cch.12135     Document Type: Review

References (77)

1. Beck, A. T., Ward, C. H., Mendelson, M., Mock, J. & Erbaugh, J. (1961) An inventory for measuring depression. Archives of General Psychiatry, 4, 561-571.
2. Birleson, P., Hudson, I., Buchanan, D. G. & Wolff, S. (1987) Clinical evaluation of a self-rating scale for depressive disorder in childhood (Depression Self-Rating Scale). Journal of Child Psychology and Psychiatry, and Allied Disciplines, 28, 43-60.
3. Buchwald, D., Umali, P., Umali, J., Kith, P., Pearlman, T. & Komaroff, A. L. (1995) Chronic fatigue and the chronic-fatigue-syndrome - prevalence in a Pacific-Northwest health-care system. Annals of Internal Medicine, 123, 81-88.
4. Cella, M., Sharpe, M. & Chalder, T. (2011) Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale. Journal of Psychosomatic Research, 71, 124-128.
5. Chalder, T., Berelowitz, G., Pawlikowska, T., Watts, L., Wessely, S., Wright, D. & Wallace, E. P. (1993) Development of a fatigue scale. Journal of Psychosomatic Research, 37, 147-153.
6. Crawley, E. & Sterne, J. A. (2009) Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Archives of Disease in Childhood, 94, 752-756.
7. Crawley, E., Hunt, L. & Stallard, P. (2009) Anxiety in children with CFS/ME. European Child and Adolescent Psychiatry, 18, 683-689.
8. Crawley, E., Hughes, R., Northstone, K., Tilling, K., Emond, A. & Sterne, J. A. (2012) Chronic disabling fatigue at age 13 and association with family adversity. Pediatrics, 130, e71-e79.
9. Crawley, E. M., Emond, A. M. & Sterne, J. A. (2011) Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics. BMJ Open, 1, e000252.
10. Department of Health (2010) Liberating the NHS: legislative framework and next steps. Department of Health.
11. Department of Health (2011) NHS Outcomes Framework 2012-13.
12. Devlin, N. & Appleby, J. (2010) Getting the most out of PROMs. Putting health outcomes at the heart of NHS decision-making.
13. Elbers, R. G., Rietberg, M. B., Van Wegen, E. E., Verhoef, J., Kramer, S. F., Terwee, C. B. & Kwakkel, G. (2012) Self-report fatigue questionnaires in multiple sclerosis, Parkinson's disease and stroke: a systematic review of measurement properties. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21, 925-944.
14. EuroQol (1990) EuroQol - a new facility for the measurement of health-related quality of life. The EuroQol Group. Health Policy, 16, 199-208.
15. Evengard, B., Jacks, A., Pedersen, N. L. & Sullivan, P. F. (2005) The epidemiology of chronic fatigue in the Swedish Twin Registry. Psychological Medicine, 35, 1317-1326.
16. Fitzpatrick, R. (2009) Patient-reported outcome measures and performance measurement. In: Performance Measurement for Health System Improvement: Experiences, Challenges and Prospects (eds P. C. Smith, E. Mossialos, I. Papnicolas, S. Leatherman ), pp. 63-86. Cambridge University Press, Cambridge, UK.
17. Fitzpatrick, R., Davey, C., Buxton, M. J. & Jones, D. R. (1998) Evaluating patient-based outcome measures for use in clinical trials. Health Technology Assessment, 2, i-74.
18. Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G. & Komaroff, A. (1994) The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Annals of Internal Medicine, 121, 953-959.
19. Garralda, M. E. & Rangel, L. (2004) Impairment and coping in children and adolescents with chronic fatigue syndrome: a comparative study with other paediatric disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 45, 543-552.
20. Garratt, A., Schmidt, L., Mackintosh, A. & Fitzpatrick, R. (2002) Quality of life measurement: bibliographic study of patient assessed health outcome measures. BMJ (Clinical Research Ed.), 324, 1417.
21. van Geelen, S. M., Bakker, R. J., Kuis, W. & Van De Putte, E. M. (2010) Adolescent chronic fatigue syndrome: a follow-up study. Archives of Pediatrics and Adolescent Medicine, 164, 810-814.
22. van Geelen, S. M., Fuchs, C. E., Sinnema, G., van de Putte, E. M., van Geel, R., Hermans, H. J. & Kuis, W. (2011) Self-investigation in adolescent chronic fatigue syndrome: narrative changes and health improvement. Patient Education and Counseling, 83, 227-233.
23. Goodman, R. (1997) The Strengths and Difficulties Questionnaire: a research note. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 38, 581-586.
24. Gordon, B. & Lubitz, L. (2009) Promising outcomes of an adolescent chronic fatigue syndrome inpatient programme. Journal of Paediatrics and Child Health, 45, 286-290.
25. Gordon, B. A., Knapman, L. M. & Lubitz, L. (2010) Graduated exercise training and progressive resistance training in adolescents with chronic fatigue syndrome: a randomized controlled pilot study. Clinical Rehabilitation, 24, 1072-1079.
26. Haywood, K., Marshall, S. & Fitzpatrick, R. (2006a) Patient participation in the consultation process: a structured review of intervention strategies. Patient Education and Counseling, 63, 12-23.
27. Haywood, K. L., Garratt, A. M. & Fitzpatrick, R. (2006b) Quality of life in older people: a structured review of self-assessed health instruments. Expert Review of Pharmacoeconomics and Outcomes Research, 6, 181-194.
28. Haywood, K. L., Chapman, S. & Staniszewska, S. (2007) Health Status and Quality of Life in People with Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS): a Structured Review of Patient-Reported Outcome Measures. Warwick.
29. Haywood, K. L., Staniszewska, S. & Chapman, S. (2012) Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21, 35-52.
30. Hewlett, S., Hehir, M. & Kirwan, J. R. (2007) Measuring fatigue in rheumatoid arthritis: a systematic review of scales in use. Arthritis and Rheumatism, 57, 429-439.
31. Hickie, I., Davenport, T., Vernon, S. D., Nisenbaum, R., Reeves, W. C., Hadzi-Pavlovic, D. & Lloyd, A. (2009) Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings? The Australian and New Zealand Journal of Psychiatry, 43, 25-35.
32. Jelbert, R., Stedmon, J. & Stephens, A. (2010) A qualitative exploration of adolescents' experiences of chronic fatigue syndrome. Clinical Child Psychology and Psychiatry, 15, 267-283.
33. Kawatani, J., Mizuno, K., Shiraishi, S., Takao, M., Joudoi, T., Fukuda, S., Watanabe, Y. & Tomoda, A. (2011) Cognitive dysfunction and mental fatigue in childhood chronic fatigue syndrome - a 6-month follow-up study. Brain and Development, 33, 832-841.
34. Kennedy, G., Underwood, C. & Belch, J. J. (2010) Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood. Pediatrics, 125, e1324-e1330.
35. Knoop, H., Prins, J. B., Stulemeijer, M., Van Der Meer, J. W. & Bleijenberg, G. (2007) The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance. Journal of Neurology, Neurosurgery, and Psychiatry, 78, 434-436.
36. Knoop, H., Stulemeijer, M., De Jong, L. W., Fiselier, T. J. & Bleijenberg, G. (2008) Efficacy of cognitive behavioral therapy for adolescents with chronic fatigue syndrome: long-term follow-up of a randomized, controlled trial. Pediatrics, 121, e619-e625.
37. Kovacs, M. (1985) The Children's Depression, Inventory (CDI). Psychopharmacology Bulletin, 21, 995-998.
38. Krupp, L. B., Larocca, N. G., Muir-Nash, J. & Steinberg, A. D. (1989) The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Archives of Neurology, 46, 1121-1123.
39. Landgraf, J. M., Maunsell, E., Speechley, K. N., Bullinger, M., Campbell, S., Abetz, L. & Ware, J. E. (1998) Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 7, 433-445.
40. Lloyd, S., Chalder, T., Sallis, H. M. & Rimes, K. A. (2012) Telephone-based guided self-help for adolescents with chronic fatigue syndrome: a non-randomised cohort study. Behaviour Research and Therapy, 50, 304-312.
41. Mokkink, L. B., Terwee, C. B., Stratford, P. W., Alonso, J., Patrick, D. L., Riphagen, I., Knol, D. L., Bouter, L. M. & De Vet, H. C. (2009) Evaluation of the methodological quality of systematic reviews of health status measurement instruments. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 18, 313-333.
42. Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., Bouter, L. M. & De Vet, H. C. (2010) The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. Journal of Clinical Epidemiology, 63, 737-745.
43. Mundt, J. C., Marks, I. M., Shear, M. K. & Greist, J. H. (2002) The Work and Social Adjustment Scale: a simple measure of impairment in functioning. The British Journal of Psychiatry: The Journal of Mental Science, 180, 461-464.
44. Nice (2007) Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy); diagnosis and management. National Institute for Health and Clinical Excellence (NICE).
45. Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L. & Van De Putte, E. M. (2011a) Fatigue In Teenagers on the interNET - the FITNET Trial. A randomized clinical trial of web-based cognitive behavioural therapy for adolescents with chronic fatigue syndrome: study protocol. [ISRCTN59878666]. BMC Neurology, 11, 23.
46. Nijhof, S. L., Maijer, K., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L. & Van De Putte, E. M. (2011b) Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. Pediatrics, 127, e1169-e1175.
47. Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L. & Van De Putte, E. M. (2012) Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet, 379, 1412-1418.
48. Nunnally, J. C. & Bernstein, I. H. (1994) Psychometric Theory. McGraw-Hill, New York, NY, USA.
49. Papay, J. P. & Spielberger, C. D. (1986) Assessment of anxiety and achievement in kindergarten and first- and second-grade children. Journal of Abnormal Child Psychology, 14, 279-286.
50. Patrick, D. L., Burke, L. B., Powers, J. H., Scott, J. A., Rock, E. P., Dawisha, S., O'Neill, R. & Kennedy, D. L. (2007) Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value in Health, 10 (Suppl. 2), S125-S137.
51. van de Putte, E. M., Engelbert, R. H., Kuis, W., Kimpen, J. L. & Uiterwaal, C. S. (2006) How fatigue is related to other somatic symptoms. Archives of Disease in Childhood, 91, 824-827.
52. van de Putte, E. M., Engelbert, R. H., Kuis, W., Kimpen, J. L. & Uiterwaal, C. S. (2007) Alexithymia in adolescents with chronic fatigue syndrome. Journal of Psychosomatic Research, 63, 377-380.
53. Rangel, L., Garralda, M. E., Levin, M. & Roberts, H. (2000) The course of severe chronic fatigue syndrome in childhood. Journal of the Royal Society of Medicine, 93, 129-134.
54. Ravens-Sieberer, U., Wille, N., Badia, X., Bonsel, G., Burstrom, K., Cavrini, G., Devlin, N., Egmar, A. C., Gusi, N., Herdman, M., Jelsma, J., Kind, P., Olivares, P. R., Scalone, L. & Greiner, W. (2010) Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 19, 887-897.
55. Ray, C., Weir, W. R. C., Phillips, S. & Cullen, S. (1992) Development of a measure of symptoms in chronic fatigue syndrome: the profile of fatigue-related symptoms (PFRS). Psychology and Health, 7, 27-43.
56. Reeves, W. C., Lloyd, A., Vernon, S. D., Klimas, N., Jason, L. A., Bleijenberg, G., Evengard, B., White, P. D., Nisenbaum, R. & Unger, E. R. (2003) Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Services Research, 3, 25.
57. Reeves, W. C., Jones, J. F., Maloney, E., Heim, C., Hoaglin, D. C., Boneva, R., Morrissey, M. & Devlin, R. (2007) Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Population Health Metrics, 5, 5.
58. Reyes, M., Nisenbaum, R., Hoaglin, D. C., Unger, E. R., Emmons, C., Randall, C., Stewart, J. A., Abbey, S., Jones, J. F., Gantz, N., Minden, S. & Reeves, W. C. (2003) Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine, 163, 1530-1536.
59. Schwartz, C. E., Andresen, E. M., Nosek, M. A. & Krahn, G. L. (2007) Response shift theory: important implications for measuring quality of life in people with disability. Archives of Physical Medicine and Rehabilitation, 88, 529-536.
60. Skapinakis, P., Lewis, G. & Mavreas, V. (2003) Unexplained fatigue syndromes in a multinational primary care sample: specificity of definition and prevalence and distinctiveness from depression and generalized anxiety. The American Journal of Psychiatry, 160, 785-787.
61. Snyder, C. F., Aaronson, N. K., Choucair, A. K., Elliott, T. E., Greenhalgh, J., Halyard, M. Y., Hess, R., Miller, D. M., Reeve, B. B. & Santana, M. (2012) Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21, 1305-1314.
62. Spence, S. H. (1998) A measure of anxiety symptoms among children. Behaviour Research and Therapy, 36, 545-566.
63. Spirito, A., Stark, L. J. & Williams, C. (1988) Development of a brief coping checklist for use with pediatric populations. Journal of Pediatric Psychology, 13, 555-574.
64. Staniszewska, S., Haywood, K. L., Brett, J. & Tutton, L. (2012) Patient and public involvement in patient-reported outcome measures: evolution not revolution. The Patient, 5, 79-87.
65. Streiner, D. & Norman, G. (2008) Health Measurement Scales: A Practical Guide to Their Development and Use. Oxford University Press, Oxford, UK.
66. Stulemeijer, M., De Jong, L. W., Fiselier, T. J., Hoogveld, S. W. & Bleijenberg, G. (2005) Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial. BMJ (Clinical Research Ed.), 330, 14.
67. Terwee, C. B., Jansma, E. P., Riphagen, I. I. & De Vet, H. C. (2009) Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 18, 1115-1123.
68. Terwee, C. B., Mokkink, L. B., Knol, D. L., Ostelo, R. W., Bouter, L. M. & De Vet, H. C. (2012) Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21, 651-657.
69. USFDA (2009) Guidance for industry. Patient-reported outcome measures: use in medical product development to support labelling claims. Silver Spring, MD.
70. Varni, J. W., Seid, M. & Rode, C. A. (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Medical Care, 37, 126-139.
71. Vercoulen, J. H., Swanink, C. M., Fennis, J. F., Galama, J. M., Van Der Meer, J. W. & Bleijenberg, G. (1994) Dimensional assessment of chronic fatigue syndrome. Journal of Psychosomatic Research, 38, 383-392.
72. de Vet, H. C. W., Terwee, C. B., Mokkink, L. B. & Knol, D. L. (2011) Systematic reviews of measurement properties. In: Measurement in Medicine, pp. 275-311. Cambridge University Press, Cambridge, UK.
73. Walker, L. S., Garber, J. & Greene, J. W. (1991) Somatization symptoms in pediatric abdominal pain patients: relation to chronicity of abdominal pain and parent somatization. Journal of Abnormal Child Psychology, 19, 379-394.
74. Ware, J. E., Kosinski, M. & Dewey, J. E. (2001) How to Score Version Two of the SF-36 Health Survey (Standard and Acute Forms). QualityMetric Inc., Lincoln, RI. USA.
75. Wessely, S., Chalder, T., Hirsch, S., Wallace, P. & Wright, D. (1997) The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study. American Journal of Public Health, 87, 1449-1455.
76. Wille, N., Badia, X., Bonsel, G., Burstrom, K., Cavrini, G., Devlin, N., Egmar, A. C., Greiner, W., Gusi, N., Herdman, M., Jelsma, J., Kind, P., Scalone, L. & Ravens-Sieberer, U. (2010) Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 19, 875-886.
77. ter Wolbeek, M., Van Doornen, L. J., Kavelaars, A., Tersteeg-Kamperman, M. D. & Heijnen, C. J. (2011) Fatigue, depressive symptoms, and anxiety from adolescence up to young adulthood: a longitudinal study. Brain, Behavior, and Immunity, 25, 1249-1255.