Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis
Abstract
The evaluation of quality of life (QoL) plays an increasingly important role in clinical research and drug trials in ALS. However, most of the scales employed so far are based on a fixed external value system, and may therefore not reflect the patients' subjective perception of QoL accurately. In addition, many ALS patients complain about the psychological distress inflicted by QoL questionnaires which focus on functional status, as they constantly remind patients of their deterioration. We therefore asked 42 ALS patients to assess, using visual analogue scales, their subjective perception of the validity of three QoL instruments as well as the emotional distress caused by them. The scales were: the Sickness Impact Profile (SIP), the Short Form 36 (SF-36), and the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW). Patients were examined at least three times at two-month intervals. The SIP was filled out by all patients, the SF-36 and the SEIQoL-DW were assigned at random. The validity of the SEIQoL-DW was rated higher than that of the SIP (p<0.001) and of the SF-36 (p<0.001). The SIP imparted a higher emotional distress to patients than the SEIQoL-DW (p<0.005), with a trend in the same direction for the SF-36 (p=0.082). The most frequently mentioned QoL-relevant domains in the SEIQoL-DW were family (100%), health (53%), and profession (50%). These results should prompt further discussion and investigation on the most appropriate way to assess QoL in patients with ALS.
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Social support has increasing importance as MND progresses.
“Previous literature has identified that social support has a strong association with quality of life (Lulé et al., 2012), is inversely related to a wish to die (McLeod and Clarke, 2007), and has an increasing importance as the disease progresses (Neudert et al., 2001).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Neudert et al., 2001
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- Authors
- Neudert, C., Wasner, M., & Borasio, G. D.
- Affiliations
- Ludwig-Maximilians-Universität München (DE)
- Corresponding author
- Borasio, Gian Domenico
- Venue
- Journal of the Neurological Sciences
- Publisher
- Elsevier BV
- Published
- 2001-10
- Volume
- 191
- Issue
- 1-2
- Pages
- 103-109
- ISSN
- 0022-510X (ISSN-L)
- OpenAlex
- W2101665670
- Cited by
- 157
- References
- 48
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 3 · 2023: 5 · 2022: 2 · 2021: 7 · 2020: 3 · 2019: 2 · 2018: 4 · 2017: 3 · 2016: 4 · 2015: 9 · 2014: 4 · 2013: 5 · 2012: 6
- FWCI
- 23.45
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of the Neurological Sciences (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- amyotrophic lateral sclerosis, quality of life assessment, patient perspectives, Sickness Impact Profile, SF-36, SEIQoL-DW, questionnaire validity, emotional distress, patient-reported outcomes
- MeSH terms
- Amyotrophic Lateral Sclerosis, Cues, Demography, Female, Germany, Health Status Indicators, Humans, Male, Middle Aged, Psychological Tests, Quality of Life, Severity of Illness Index, Stress, Psychological, Reproducibility of Results, Patient Satisfaction, Sickness Impact Profile
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