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

Gold, Stefan M.; Schulz, Holger; Stein, Heike; Solf, Katrin; Schulz, Karl‐Heinz; Heesen, Christoph

doi:10.1016/j.jns.2009.10.020

Cited by 20 publications

(17 citation statements)

References 27 publications

(32 reference statements)

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“…of itemsDomains assessed (no. of items)Time period assessedTime taken to completePrimary outcome measuresMSQoL-54 [15]54Generic (SF-36), energy (1), pain (1), sexual function/satisfaction (5), cognitive function (4), health distress/overall QoL (6), social (1)Past 4 weeks~15 minNo total score; generates two separate composite scores for physical and mental health (0–100); higher scores indicate better QoLMSQLI [16]138 (80 a )Generic (SF-36), fatigue (21), pain (6), sexual function (4), bladder function (4), bowel function (4), visual function (5), cognitive function (20), emotional function (18), social (18)Past 4 weeks45 min (30 min for short form)No total score; each of the individual component scales generates a separate scoreFAMS [17]59Symptoms (7), mobility (7), family/social wellbeing (7), general contentment (7), thinking/fatigue (9), emotional wellbeing (7), additional concerns (15)Past 7 days20–30 minProvides a total score (0–176) based on 44 items, with higher scores indicating better QoL; the additional-concerns subscale score is not included in the total FAMS scoreHAQUAMS [18]38Fatigue/thinking (4), mobility of lower limbs (5), mobility of upper limbs (5), social function (6), mood (8), sensory symptoms (2), bladder/bowel control/sexuality (3), main symptoms (1), recent health changes (2), disturbed vision (1) and general rating of handicap (1)Past week b 20 minProvides a total score (0.00–5.00) based on five main subdomains; higher scores indicate poorer QoL; clinically relevant change defined as >0.22 change in total score from baseline [78]LMSQoL [19]8Family/social (2), fatigue/energy (2), psychological status (3), self-confidence/appearance (1)Past month~2 minProvides a total score (0–32); higher scores indicate better QoL; clinically relevant improvement defined as ≥3-point increase from baseline [73]MSIS-29 [20]29Physical impact (20), psychological impact (9)Past 2 weeks5–10 minA combined score can be generated, or both components can be reported separately (0–100); higher scores indic...…”

Section: Introductionmentioning

confidence: 99%

Health-Related Quality of Life in Patients with Multiple Sclerosis: Impact of Disease-Modifying Drugs

Jongen

2017

CNS Drugs

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Multiple sclerosis (MS) has a profound impact on health-related quality of life (HRQoL), a comprehensive subjective measure of the patient’s health status. Assessment of HRQoL informs on the potential advantages and disadvantages of disease-modifying drugs (DMDs) beyond their effects on observer-based disability and magnetic resonance imaging abnormalities. This article reviews published data from randomized controlled trials and observational studies regarding the effects of currently available DMDs on HRQoL. Data indicate that DMD treatment is associated with prevention of worsening or with improvement of HRQoL, and that, in general, second-line DMDs may have a greater impact on HRQoL than first-line DMDs. In clinical practice, monitoring of HRQoL provides clinicians with unique information regarding disease impact and potential benefits and adverse effects of DMD treatment that may not be obtained otherwise; it might also permit early detection of an unfavorable disease course. It is suggested to assess HRQoL at the time of diagnosis and before starting or switching DMD treatment. Regular HRQoL measurements contribute to a comprehensive clinical evaluation, and may help to elucidate and quantify the patient’s contribution to shared decision making regarding DMD treatment. Further studies are needed to better determine the role of HRQoL assessments in daily MS care.

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Section: Introductionmentioning

confidence: 99%

Health-Related Quality of Life in Patients with Multiple Sclerosis: Impact of Disease-Modifying Drugs

Jongen

2017

CNS Drugs

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“…MCID estimates are established for patients’ QoL on the HAQUAMS scale, a predefined secondary endpoint of our trial. The threshold for fatigue impact on QoL measured by the HAQUAMS is 0.36 on the fatigue subscale 28. Here, ITT analyses indicated a ‘probably clinically significant effect’ using published interpretation guidelines 35.…”

Section: Resultsmentioning

confidence: 67%

“…Following FDA guidelines for patient-reported outcome measures, we analysed data on minimal clinically important difference (MCID) in patients’ QoL. Here, we used the Hamburg QoL Questionnaire (HAQUAMS), a validated MS-specific QoL instrument with established thresholds for clinically relevant change (threshold of 0.36 on the fatigue subscale) 28. As recommended by the FDA (UCM193282), we used the anchor-based MCID34 and measured the treatment effect against the definitions put forth by Kieser and Hauschke 35.…”

Section: Methodsmentioning

confidence: 99%

Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis

Pöttgen

Moss‐Morris

Wendebourg

et al. 2018

J Neurol Neurosurg Psychiatry

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“…The HAQUAMS is a reliable, valid and responsive instrument [11, 18] that showed good overlap with the main sections of the MSQPT [1]. The relative efficiency of the MSQPT over the HAQUAMS in this cohort relied on the improved ability of the MSQPT participation section to detect change; however, the HAQUAMS proved better than the MSQPT activity section at detecting improvement.…”

Section: Discussionmentioning

confidence: 99%

“…For the distribution-based MID estimates, 0.2*SD, 0.33*SD, SEM and the MDC were calculated for the 90% and 95% confidence intervals (MDC 90 and MDC 95 , respectively). Although 0.5*SD is the best choice for SD [6, 11, 12], it is equivalent to 1 SEM [12] or greater [6] and therefore does not contribute additional information. Thus, 0.2*SD was chosen, as is often used [5, 10], and 0.33*SD was used for comparable reasons, as the MID of the HAQUAMS was based on 0.33*SD [11].…”

Section: Methodsmentioning

confidence: 99%

Patient-reported questionnaires in MS rehabilitation: responsiveness and minimal important difference of the multiple sclerosis questionnaire for physiotherapists (MSQPT)

Maas¹

2017

BMC Neurol

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BackgroundThe Multiple Sclerosis Questionnaire for Physical Therapists (MSQPT) is a patient-rated outcome questionnaire for evaluating the rehabilitation of persons with multiple sclerosis (MS). Responsiveness was evaluated, and minimal important difference (MID) estimates were calculated to provide thresholds for clinical change for four items, three sections and the total score of the MSQPT.MethodsThis multicentre study used a combined distribution- and anchor-based approach with multiple anchors and multiple rating of change questions. Responsiveness was evaluated using effect size, standardized response mean (SRM), modified SRM and relative efficiency. For distribution-based MID estimates, 0.2 and 0.33 standard deviations (SD), standard error of measurement (SEM) and minimal detectable change were used. Triangulation of anchor- and distribution-based MID estimates provided a range of MID values for each of the four items, the three sections and the total score of the MSQPT. The MID values were tested for their sensitivity and specificity for amelioration and deterioration for each of the four items, the three sections and the total score of the MSQPT. The MID values of each item and section and of the total score with the best sensitivity and specificity were selected as thresholds for clinical change.The outcome measures were the MSQPT, Hamburg Quality of Life Questionnaire for Multiple Sclerosis (HAQUAMS), rating of change questionnaires, Expanded Disability Status Scale, 6-metre timed walking test, Berg Balance Scale and 6-minute walking test.ResultsThe effect size ranged from 0.46 to 1.49. The SRM data showed comparable results. The modified SRM ranged from 0.00 to 0.60. Anchor-based MID estimates were very low and were comparable with SD- and SEM-based estimates. The MSQPT was more responsive than the HAQUAMS in detecting improvement but less responsive in finding deterioration. The best MID estimates of the items, sections and total score, expressed in percentage of their maximum score, were between 5.4% (activity) and 22% (item 10) change for improvement and between 5.7% (total score) and 22% (item 10) change for deterioration.ConclusionsThe MSQPT is a responsive questionnaire with an adequate MID that may be used as threshold for change during rehabilitation of MS patients.Trial registrationThis trial was retrospectively (01/24/2015) registered in ClinicalTrials.gov as NCT02346279.Electronic supplementary materialThe online version of this article (doi:10.1186/s12883-017-0834-1) contains supplementary material, which is available to authorized users.

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

Cited by 20 publications

References 27 publications

Health-Related Quality of Life in Patients with Multiple Sclerosis: Impact of Disease-Modifying Drugs

Health-Related Quality of Life in Patients with Multiple Sclerosis: Impact of Disease-Modifying Drugs

Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis

Patient-reported questionnaires in MS rehabilitation: responsiveness and minimal important difference of the multiple sclerosis questionnaire for physiotherapists (MSQPT)

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