Relevance of Quality of Life Assessment for Multiple Sclerosis Patients with Memory Impairment

Abstract

BackgroundMemory 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 FindingsOne 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/SignificanceOur study suggests that memory dysfunction did not compromise the reliability or validity of the self-reported QoL questionnaires.

Toward Meeting the Needs of Homeless People with Schizophrenia: The Validity of Quality of Life Measurement

“…This issue should be explored in future studies on larger samples using in particular recent suitability indices proposed to compare psychometric properties between samples [21,22,32]. …”

“…These studies provided evidence that QoL questionnaires could be reliable/valid measures of health status among the homeless. However, these studies 1) did not specifically consider homeless patients with schizophrenia (only 18 individuals of the 250 studied suffered from schizophrenia in the study by Garcia-Rea et al [19]); 2) studied generic QoL questionnaires (WHOQOL-100 [19] and SF-36 [20]); 3) did not report how the factorial structure described in the sample fit with the initial structure of the tested instrument, which is a key point when considering validity in these specific populations, who were not included in the development of questionnaires [21,22]; and 4) did not explore the sensitivity to change of the instruments, which is one of the most essential requirements of an outcome measure [13,23]. …”

Systematic review of the influence of spasticity on quality of life in adults with chronic neurological conditions

“…Generic QOL instruments are useful for comparing QOL across different conditions, but they might be insensitive to minor changes in specific conditions. [46,47] For example, there is some evidence to suggest that SF-36 might not be appropriate in the MS population, due to its significant floor and ceiling effect. [48] Disease-specific measures of QOL may enable researchers to capture subtle and unique effects of a particular condition on QOL, which otherwise might be overlooked by generic measures.…”

Spanish cross-cultural adaptation and psychometric properties of the Schizophrenia Quality of Life short-version questionnaire (SQoL18) in 3 middle-income countries: Bolivia, Chile and Peru

“…To quantify the manner in which each of the 3 structures matched with the initial structure, suitability indices were calculated as previously described (Baumstarck et al, 2012). Decision rules, which were established by experts in QoL, were used to define satisfactory properties according to appropriate standards (see Table 5) (Baumstarck et al, 2012.…”

“…Decision rules, which were established by experts in QoL, were used to define satisfactory properties according to appropriate standards (see Table 5) (Baumstarck et al, 2012. The means of the different proportions (i.e., level of match with decision rules) were calculated to produce a suitability index of the 'construct validity' and a suitability index of the 'external validity'.…”