Top

Quality of Life Research

Gepubliceerd in:

01-06-2014

Fatigue in patients with spinal muscular atrophy type II and congenital myopathies: evaluation of the fatigue severity scale

Auteurs: Ulla Werlauff, A. Højberg, R. Firla-Holme, B. F. Steffensen, J. Vissing

Gepubliceerd in: Quality of Life Research | Uitgave 5/2014

Abstract

Purpose

The aim of this study was to evaluate whether the fatigue severity scale (FSS) is an appropriate instrument to assess fatigue in patients with spinal muscular atrophy type II (SMA II) and congenital myopathies (CM).

Methods

FSS and visual analog scale (VAS) were administered to 33 SMA II- and 72 CM patients. The psychometric properties of the FSS were evaluated by means of classical test theories for each of the disease groups. If abnormal fatigue was present in the disease group, the construct of fatigue was evaluated by means of focus group interviews.

Results

Fatigue was rare in SMA II patients, but very frequent in patients with CM. The cut-off score designating abnormal fatigue (FSS score ≥ 4) was exceeded by 10 % of the SMA II patients in contrast to 76 % of the CM patients, of whom 52 % suffered from severe fatigue (FSS score ≥ 5). Focus group interviews demonstrated that fatigue had an adverse effect on motor function, level of energy, social relations, and identity, four themes that could be captured by the FSS. The FSS and VAS were strongly correlated in SMA II patients, but only moderately in CM patients. The psychometric properties indicated that the original FSS with nine items measures more than one construct of fatigue, eliminating the first two items improved scale properties.

Conclusion

This study demonstrates that fatigue is characteristic in patients with CM, but not in patients with SMA II, in whom fatigue does not seem to impact daily life. While fatigue in CM and SMA II can be captured by FSS, omitting the first two items of the scale will improve its properties and content validity, along with comprehension of the scale itself.

vorige artikel Development, validity and reliability of the short multidimensional positive mental health instrument

volgende artikel Measurement properties of the Flu-Like Symptom Index from the Hepatitis Physical Symptom Severity Diary

Lou, J. S., Weiss, M. D., & Carter, G. T. (2010). Assessment and management of fatigue in neuromuscular disease. American Journal of Hospice and Palliative Medicine, 27(2), 145–157.PubMedCrossRef

World Health organization. (2001). International classification of functioning, disability and health: ICF. Geneva: WHO.

de Vries, J. M., Hagemans, M. L., Bussmann, J. B., van der Ploeg, A. T., & van Doorn, P. A. (2010). Fatigue in neuromuscular disorders: Focus on Guillain–Barré syndrome and Pompe disease. Cellular and Molecular Life Sciences, 67(5), 701–713.PubMedCentralPubMedCrossRef

Wokke, J. H. (2007). Fatigue is part of the burden of neuromuscular diseases. Journal of Neurology, 254(7), 948–949.PubMedCentralPubMedCrossRef

Bigland-Ritchie, B., Jones, D. A., Hosking, G. P., & Edwards, R. H. (1978). Central and peripheral fatigue in sustained maximum voluntary contractions of human quadriceps muscle. Clinical Science and Molecular Medicine, 54(6), 609–614.PubMed

Chaudhuri, A., & Behan, P. O. (2004). Fatigue in neurological disorders. Lancet, 363(9413), 978–988.PubMedCrossRef

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.PubMedCrossRef

ENMC. (2011). http://www.enmc.org/workshop/?id=110&mid=88.

Pettersson, S., Möller, S., Svenungsson, E., Gunnarsson, I., & Welin Henriksson, E. (2010). Women’s experience of SLE-related fatigue: A focus group interview study. Rheumatology (Oxford), 49(10), 1935–1942.CrossRef

10.

Kalkmann, J. S., Schillings, M. L., van der Werf, S. P., Padberg, G. W., Zwarts, M. J., van Engelen, B. G., et al. (2005). Experienced fatigue in facioscapulohumeral dystrophy, myotonic dystrophy, and HMSN-I. Journal of Neurology, Neurosurgery and Psychiatry, 76(10), 1406–1409.CrossRef

11.

Féasson, L., Camdessanché, J. P., El Mandhi, L., Calmels, P., & Millet, G. Y. (2006). Fatigue and neuromuscular diseases. Annales de Readaptation et de Medecine Physique, 49(6), 289–300.PubMedCrossRef

12.

de Groot, I. J., & de Witte, L. P. (2005). Physical complaints in ageing persons with spinal muscular atrophy. Journal of Rehabilitation Medicine, 37(4), 8–62.CrossRef

13.

North, K. (2008). What’s new in congenital myopathies? Neuromuscular Disorders, 18(6), 433–442.PubMedCrossRef

14.

Hagemans, M. L., van Schie, S. P., Janssens, A. C., van Doorn, P. A., Reuser, A. J., & van der Ploeg, A. T. (2007). Fatigue: An important feature of late-onset Pompe disease. Journal of Neurology, 254(7), 941–945.PubMedCentralPubMedCrossRef

15.

Merkies, I. S., Schmitz, P. I., Samijn, J. P., van der Meché, F. G., & van Doorn, P. A. (1999). Fatigue in immune-mediated polyneuropathies. European Inflammatory Neuropathy Cause and Treatment (INCAT) Group. Neurology, 53(8), 1648–1654.PubMedCrossRef

16.

Kleinman, L., Zodet, M. W., Hakim, Z., Aledort, J., Barker, C., Chan, K., et al. (2000). Psychometric evaluation of the fatigue severity scale for use in chronic hepatitis C. Quality of Life Research, 9(5), 499–508.PubMedCrossRef

17.

Ferentinos, P., Kontaxakis, V., Havaki-Kontaxaki, B., Dikeos, D., & Lykouras, L. (2011). Psychometric evaluation of the Fatigue Severity Scale in patients with major depression. Quality of Life Research, 20(3), 457–465.PubMedCrossRef

18.

Valko, P. O., Bassetti, C. L., Bloch, K. E., Held, U., & Baumann, C. R. (2008). Validation of the Fatigue Severity Scale in a Swiss cohort. Sleep, 31(11), 1601–1607.PubMedCentralPubMed

19.

Lerdal, A., Wahl, A., Rustøen, T., Hanestad, B. R., & Moum, T. (2005). Fatigue in the general population: A translation and test of the psychometric properties of the Norwegian version of the fatigue severity scale. Scandinavian Journal of Public Health, 33(2), 123–130.PubMedCrossRef

20.

Mills, R. J., Young, C. A., Nicholas, R. S., Pallant, J. F., & Tennant, A. (2009). Rasch analysis of the Fatigue Severity Scale in multiple sclerosis. Multiple sclerosis, 15(1), 81–87.PubMedCrossRef

21.

Lerdal, A., Johansson, S., Kottorp, A., & von Koch, L. (2010). Psychometric properties of the Fatigue Severity Scale: Rasch analyses of responses in a Norwegian and Swedish MS cohort. Multiple sclerosis, 16(6), 733–741.PubMedCrossRef

22.

Lerdal, A., & Kottorp, A. (2011). Psychometric properties of the Fatigue Severity Scale—Rasch analyses of individual responses in a Norwegian stroke cohort. International Journal of Nursing Studies, 48(10), 1258–1265.PubMedCrossRef

23.

Amtmann, D., Bamer, A. M., Noonan, V., Lang, N., Kim, J., & Cook, K. F. (2012). Comparison of the psychometric properties of two fatigue scales in multiple sclerosis. Rehabilitation Psychology, 57(2), 159–166.PubMedCentralPubMedCrossRef

24.

Takasaki, H., & Treleaven, J. (2012). Construct validity and test–retest reliability of the Fatigue Severity Scale in people with chronic neck pain. Archives of Physical Medicine and Rehabilitation, 94(7), 1328–1334.

25.

Rothmann, M., Burke, L., Erickson, P., Leidy, N. K., Patrick, D. L., & Petrie, C. D. (2009). Use of existing patient-reported outcome (PRO) instruments and their modification: The ISPOR good research practice for evaluating and documenting content validity for the use of existing instruments and their modification PRO task report. Value in Health, 12(8), 1075–1083.CrossRef

26.

Patrick, D. L., Burke, L., Erickson, P., Gwaltney, C. J., Leidy, N. K., Martin, M. L., et al. (2011). Content validity—Establishing and reporting the evidence in newly developed patient-reported outcome (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part I—Eliciting concepts for a new PRO instrument. Value in Health, 14(8), 967–977.PubMedCrossRef

27.

Patrick, D. L., Burke, L., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity—Establishing and reporting the evidence in newly developed patient-reported outcome (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 2—Assessing respondent understanding. Value in Health, 14(8), 978–988.PubMedCrossRef

28.

Tashakkori, A., & Teddlie, C. (1998). Mixed methodology. Combining quantitative and qualitative approaches. Thousand Oaks, CA: Sage.

29.

Morgan, D. L. (1997). Focus groups as qualitative research (2nd ed.). London: Sage.

30.

Quimet, J. A., Bunnage, J. B., Carini, R. M., Kuh, G. D., & Kennedy, J. (2004). Using focus groups to establish the validity and reliability of a college student survey. Research in Higher Education, 45, 233–250.CrossRef

31.

Fayers, P. M., & Machin, D. (2009). Quality of life. The assessment analysis and interpretation of patient-reported outcomes. New York: Wiley.

32.

Kaiser, H. F. (1960). The application of electronic computers to factor analysis. Educational and Psychological Measurement, 20, 141–151.CrossRef

33.

Krueger, R. A. (1998). Moderating focus groups. Thousand Oaks, CA: Sage.

34.

Hsieh, H., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288.PubMedCrossRef

35.

Coffey, A., & Atkinson, P. (1996). Making sense of qualitative data. Complemtary research strategies. London: Sage.

36.

Pawlikowska, T., Chalder, T., Hirsch, S. R., Wallace, P., Wright, D. J., & Wessely, S. C. (1994). Population based study of fatigue and psychological distress. BMJ, 19, 763–766.CrossRef

37.

Flachenecker, P., Kümpfel, T., Kallmann, B., Gottschalk, M., Grauer, O., Rieckmann, P., et al. (2002). Fatigue in multiple sclerosis: A comparison of different rating scales and correlation to clinical parameters. Multiple sclerosis, 8(6), 523–526.PubMedCrossRef

Titel: Fatigue in patients with spinal muscular atrophy type II and congenital myopathies: evaluation of the fatigue severity scale
Auteurs: Ulla Werlauff
A. Højberg
R. Firla-Holme
B. F. Steffensen
J. Vissing
Publicatiedatum: 01-06-2014
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 5/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-013-0565-8

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusion

Log in om toegang te krijgen

Andere artikelen Uitgave 5/2014

Testing gender invariance of the Hospital Anxiety and Depression Scale using the classical approach and Bayesian approach

Longitudinal change in health-related quality of life after intensity-modulated radiation monotherapy for clinically localized prostate cancer

A comparison of SF-36 summary measures of physical and mental health for women across the life course

Impact of hypoalphalipoproteinemia on quality of life in Taiwanese women with central obesity

Development, validity and reliability of the short multidimensional positive mental health instrument

Effect of aerobic exercise on quality of life in population with diabetic peripheral neuropathy in type 2 diabetes: a single blind, randomized controlled trial