Disease specific quality of life instruments in multiple sclerosis: Validation of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS)

Abstract

Quality of life (QoL) is discussed as an additional outcome measure in multiple sclerosis (MS). However, few questionnaires assessing disease specific QoL in MS have been published. On the basis of the literature and interviews with clinicians and MS patients, we have developed a disease specific QoL instrument and validated it in a broad range of patients with MS. In this study, a heterogeneous sample of n = 237 MS patients completed the newly developed Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS, in German language) and a battery of already validated questionnaires. They further underwent neurological scoring and objective tests. By these means, we investigated its validity, appropriateness, internal consistency, and retest reliability. Internal consistency and retest coefficients were high and satisfied psychometric standards. Convergent and discriminant validity was supported by direction, magnitude and pattern of correlations with other health measures. HAQUAMS subscales and its total score distinguished between patient groups of varied disease severity, cognitive impairment, and affective symptomatology. No floor or ceiling effects were found in either of the HAQUAMS subscales. The HAQUAMS is a reliable, valid and appropriate instrument for QoL assessment in multiple sclerosis. Data of responsiveness are currently being obtained.

Clinical and imaging correlates of the multiple sclerosis impact scale in secondary progressive multiple sclerosis

“…There is some evidence that changes in EDSS scores in the context of clinical trials may partly represent temporary fluctuation in function or variations in measurement rather than sustained disability due to irreversible myelin and neuroaxonal loss [30] and it is possible that the EDSS has a limited sensitivity for detecting neurological dysfunction in secondary progressive MS. However, a number of previous studies which have good correlation between EDSS the physical component of QoL measures [9,16,[31][32][33][34][35][36][37][38][39][40][41][42] and so the lack of a correlation in this study may reflect the limited sensitivity of EDSS in this subject group in particular, in whom the selection criteria ensured a narrow baseline range. Significant correlation of MSIS-29 measures with components of the MSFC were found.…”

Quality of life in multiple sclerosis

“…B. bei einer eindeutigen Verbesserung der Gehfähigkeit) keineswegs immer den erwarteten Enthusiasmus über "unseren" Therapieerfolg zu hören bekommen. Vergleiche zwischen verschieden Messinstrumenten von LQ sind hilfreich: So zeigt sich HAQUAMS [29] (deutsche Version HALEMS), aus Elementen von FAMS und SF-36 entwickelt, im Vergleich zu letzterem zuverlässiger und lässt auch eine Einschätzung depressiver Symptome sicher zu. Beim Vergleich dreier Fragebögen [60] schnitt FAMS am besten ab vor MSQoL-54/ SF-54, während der EuroQoL-5D (EQ-5D) nicht als Messinstrument empfohlen wird.…”

Responsiveness of patient-based and external rating scales in multiple sclerosis: Head-to-head comparison in three clinical settings

“…We present data on the responsiveness of the HAQUAMS to change of health status over time in MS patients drawn from our outpatient center database as well as two different types of behavioral interventions (multidisciplinary rehabilitation program and fitness training). The HAQUAMS is a health-related quality of life measure developed for MS patients [10]. The HAQUAMS consists of 38 items, 28 of which are the basis for computation of five subscale scores reflecting major dimensions of health-related quality of life in MS: Fatigue/Thinking (four items), Mobility lower limb (five items), Mobility upper limb (five items), Social function (six items) and Mood (eight items).…”

“…The present study assesses the suitability of the Hamburg Quality of Life Scale for Multiple Sclerosis (HAQUAMS) [10], an MS-specific HRQoL instrument, in different settings. We present data on the responsiveness of the HAQUAMS to change of health status over time in MS patients drawn from our outpatient center database as well as two different types of behavioral interventions (multidisciplinary rehabilitation program and fitness training).…”