Background Memory disturbances, in particular episodic verbal memory dysfunction, are the most frequent cognitive impairment observed in multiple sclerosis (MS) patients. The use of self-reported outcomes for evaluating treatment and managing care of these subjects has been questioned. The aim of this study was to provide new evidence about the suitability of self-reported outcomes for use in this impaired population by exploring the internal structure, reliability and external validity of a specific quality of life (QoL) instrument, the Multiple Sclerosis International Quality of Life questionnaire (MusiQoL). Methods Design: cross-sectional study. Inclusion criteria: MS patients of any disease subtype. Data collection: sociodemographic (age, gender, marital status, education level, and occupational activity) and clinical data (MS subtype, Expanded Disability Status Scale, disease duration); QoL (MusiQoL and SF36); and memory performance (Grober and Buschke test). In accordance with the French norms of the memory test, non-impaired and impaired populations were defined for short- and long-delay free composites and for short- and long-delay total composites. For the 8 populations, psychometric properties were compared to those reported from the reference population assessed in the validation study. Principal Findings One hundred and twenty-four consecutive patients were enrolled. The analysis performed in the impaired populations showed that the questionnaire structure adequately matched the initial structure of the MusiQoL. The unidimensionality of the dimensions was preserved, and the internal/external validity indices were close to those of the reference population. Conclusions/Significance Our study suggests that memory dysfunction did not compromise the reliability or validity of the self-reported QoL questionnaires.
References
[1]
Riemsma RP, Forbes CA, Glanville JM, Eastwood AJ, Kleijnen J (2001) General health status measures for people with cognitive impairment: learning disability and acquired brain injury. Health Technol Assess 5: 1–100.
[2]
Goverover Y, Chiaravalloti N, DeLuca J (2005) The relationship between self-awareness of neurobehavioral symptoms, cognitive functioning, and emotional symptoms in multiple sclerosis. Mult Scler 11: 203–212.
[3]
Benedict RH, Cox D, Thompson LL, Foley F, Weinstock-Guttman B, et al. (2004) Reliable screening for neuropsychological impairment in multiple sclerosis. Mult Scler 10: 675–678.
[4]
Auquier P, Simeoni MC, Sapin C, Reine G, Aghababian V, et al. (2003) Development and validation of a patient-based health-related quality of life questionnaire in schizophrenia: the S-QoL. Schizophr Res 63: 137–149.
[5]
Marrie RA, Miller DM, Chelune GJ, Cohen JA (2003) Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Mult Scler 9: 621–626.
[6]
Gold SM, Schulz H, Monch A, Schulz KH, Heesen C (2003) Cognitive impairment in multiple sclerosis does not affect reliability and validity of self-report health measures. Mult Scler 9: 404–410.
[7]
Baumstarck K, Pelletier J, Aghababian V, Reuter F, Klemina I, et al. (2012) Is the concept of quality of life relevant for multiple sclerosis patients with cognitive impairment? Preliminary results of a cross-sectional study. Plos ONE 7: e30627 doi:30610.31371/journal.pone.0030627.
[8]
Orley J, Saxena S, Herrman H (1998) Quality of life and mental illness. Reflections from the perspective of the WHOQOL. Br J Psychiatry 172: 291–293.
[9]
Nishiyama T, Ozaki N (2010) Measurement limit of quality-of-life questionnaires in psychiatric settings. Qual Life Res 19: 25–30.
[10]
Wong JG, Cheung EP, Chen EY, Chan RC, Law CW, et al. (2005) An instrument to assess mental patients' capacity to appraise and report subjective quality of life. Qual Life Res 14: 687–694.
[11]
Baro E, Ferrer M, Vazquez O, Miralles R, Pont A, et al. (2006) Using the Nottingham Health Profile (NHP) among older adult inpatients with varying cognitive function. Qual Life Res 15: 575–585.
[12]
Bureau-Chalot F, Novella JL, Jolly D, Ankri J, Guillemin F, et al. (2002) Feasibility, acceptability and internal consistency reliability of the nottingham health profile in dementia patients. Gerontology 48: 220–225.
[13]
Hoe J, Katona C, Roch B, Livingston G (2005) Use of the QOL-AD for measuring quality of life in people with severe dementia–the LASER-AD study. Age Ageing 34: 130–135.
[14]
Amato MP, Zipoli V, Portaccio E (2006) Multiple sclerosis-related cognitive changes: a review of cross-sectional and longitudinal studies. J Neurol Sci 245: 41–46.
[15]
Feuillet L, Reuter F, Audoin B, Malikova I, Barrau K, et al. (2007) Early cognitive impairment in patients with clinically isolated syndrome suggestive of multiple sclerosis. Mult Scler 13: 124–127.
[16]
Grafman J, Rao S, Bernardin L, Leo GJ (1991) Automatic memory processes in patients with multiple sclerosis. Arch Neurol 48: 1072–1075.
Simeoni M, Auquier P, Fernandez O, Flachenecker P, Stecchi S, et al. (2008) Validation of the Multiple Sclerosis International Quality of Life questionnaire. Mult Scler 14: 219–230.
[19]
Polman CH, Wolinsky JS, Reingold SC (2005) Multiple sclerosis diagnostic criteria: three years later. Mult Scler 11: 5–12.
[20]
Leplege A, Ecosse E, Verdier A, Perneger TV (1998) The French SF-36 Health Survey: translation, cultural adaptation and preliminary psychometric evaluation. J Clin Epidemiol 51: 1013–1023.
[21]
Van der Linden M, Coyette F, Poitrenaud J, Kalafat M, Calicis F, et al.. (2004) L'épreuve de rappel libre, rappel indicé à 16 items. In: Solal, editor. L'évaluation des troubles de la mémoire Présentation de quatre tests de mémoire épisodique et étalonnage. Marseille, France. pp. 25.
[22]
Juniper EF, Guyatt GH, Mesbah M, Ravaud P (1996) Quality of life and pharmacoeconomics in clinical trials. Philadelphia: Lippincott-Raven.
[23]
Nunnaly JC, Bernstein IC (1994) Psychometric theory. New York: Mc Graw-Hill.
[24]
Ware JE, Harris WJ, Gandek B, Rogers BW (1997) MAP-R for Windows: Multitrait-Multi-Item Analysis Program - Revised User's Guide. Boston: Health Assessment Lab.
[25]
Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrika 16: 297–334.
[26]
Wright BD, Stone MH (1979) Best test design: Rasch measurement. Chicago: Mesa press.
[27]
Rectem D, Poirenaud J, Coyette F, Kalafat M, Van der Linden M (2004) Une épreuve de rappel libre avec remémoration sélective. In: Solal, editor. L'évaluation des troubles de la mémoire, Van der Linden M and the GREMEM. Marseille.
[28]
Marrie RA, Goldman M (2007) Validity of performance scales for disability assessment in multiple sclerosis. Mult Scler 13: 1176–1182.
[29]
Patrick DL, Deyo RA (1989) Generic and disease-specific measures in assessing health status and quality of life. Med Care 27: S217–232.
[30]
DeLuca J, Barbieri-Berger S, Johnson SK (1994) The nature of memory impairments in multiple sclerosis: acquisition versus retrieval. J Clin Exp Neuropsychol 16: 183–189.
[31]
DeLuca J, Gaudino EA, Diamond BJ, Christodoulou C, Engel RA (1998) Acquisition and storage deficits in multiple sclerosis. J Clin Exp Neuropsychol 20: 376–390.
[32]
Amato MP, Grimaud J, Achiti I, Bartolozzi ML, Adeleine P, et al. (2004) European validation of a standardized clinical description of multiple sclerosis. J Neurol 251: 1472–1480.
[33]
Benedict RH, Ramasamy D, Munschauer F, Weinstock-Guttman B, Zivadinov R (2009) Memory impairment in multiple sclerosis: correlation with deep grey matter and mesial temporal atrophy. J Neurol Neurosurg Psychiatry 80: 201–206.
[34]
Rao SM (1995) Neuropsychology of multiple sclerosis. Curr Opin Neurol 8: 216–220.
[35]
Benedict RH, Cookfair D, Gavett R, Gunther M, Munschauer F, et al. (2006) Validity of the minimal assessment of cognitive function in multiple sclerosis (MACFIMS). J Int Neuropsychol Soc 12: 549–558.
[36]
Baumstarck-Barrau K, Simeoni MC, Reuter F, Klemina I, Aghababian V, et al. (2011) Cognitive function and quality of life in multiple sclerosis patients: a cross-sectional study. BMC Neurol 11: 17.
[37]
Feinstein A, Kartsounis LD, Miller DH, Youl BD, Ron MA (1992) Clinically isolated lesions of the type seen in multiple sclerosis: a cognitive, psychiatric, and MRI follow up study. J Neurol Neurosurg Psychiatry 55: 869–876.
[38]
Benito-Leon J, Morales JM, Rivera-Navarro J (2002) Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients. Eur J Neurol 9: 497–502.
[39]
Grant I, McDonald WI, Trimble MR, Smith E, Reed R (1984) Deficient learning and memory in early and middle phases of multiple sclerosis. J Neurol Neurosurg Psychiatry 47: 250–255.
[40]
Delis DC, Kramer JH, Kapla E, Ober BA (2000) California verbal learning test manual. San Antonio: Psychological corporation.
[41]
Buschke H, Fuld PA (1974) Evaluating storage, retention, and retrieval in disordered memory and learning. Neurology 24: 1019–1025.
