Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome

Vanya Gocheva, Patricia Hafner, Anna-Lena Orsini, Simone Schmidt, Sabine Schaedelin, Nicole Rueedi, Daniela Rubino-Nacht, Peter Weber, Dirk Fischer, Vanya Gocheva, Patricia Hafner, Anna-Lena Orsini, Simone Schmidt, Sabine Schaedelin, Nicole Rueedi, Daniela Rubino-Nacht, Peter Weber, Dirk Fischer

Abstract

Background: The symptoms of post-polio syndrome (PPS) and its resulting disabilities can affect quality of life and the ability to perform daily activities. No study has comprehensively analysed how various patient-reported outcome measures (PROMs) are associated with objectively assessed physical function in patients with PPS.

Aim: To investigate health-related quality of life (HRQOL), self-reported impairments and activities of daily living during 6 months and evaluate their association with clinical muscle function outcomes in individuals with PPS.

Methods: Twenty-seven patients with PPS were included in the study. At baseline and 6 months, patients were administered PROMs measuring HRQOL (WHOQOL-BREF), self-reported impairments related to PPS (SIPP-RS) and activities of daily living (IBM-FRS). Clinical muscle function outcomes included 6 min walking distance (6MWD) and motor function measure (MFM).

Results: There were no changes in self-reported impairments (25.52 to 24.93, p = 0.40), activities of daily living (33.89 to 33.30, p = 0.20), 6MWD (391.52 to 401.85, p = 0.30) and MFM (83.87 to 85.46, p = 0.14) during 6 months, while the HRQOL psychological health decreased during this period (76.85 to 72.38, p = 0.05). A strong association was found between activities of daily living and clinical muscle function outcomes (6MWD: ß = 0.02, 95% CI: 0.02;0.03, t = 6.88, p < 0.01; MFM: ß = 0.25, 95% CI: 0.17;0.33, t = 6.69, p < 0.01). Self-reported impairments and HRQOL domains were not associated with the clinical muscle outcomes.

Conclusions: Study findings indicate that objectively measured walking and motor abilities do not reflect patient's perspectives of their HRQOL and impairment due to PPS. More research is needed to assess changes over time and capture clinically meaningful changes in individuals with PPS and to increase the understanding of how the patient's perspective of disability measured by PROMs is related to objectively measured walking and motor abilities.

Trial registration: ClinicalTrials.gov Identifier ( NCT02801071 ) registered June 15, 2016.

Keywords: Activities of daily living; Health-related quality of life; Impairments; Motor function; Patient-reported outcomes; Post-polio syndrome.

Conflict of interest statement

DF is principle investigator for studies on spinal muscular atrophy sponsored by Hofmann-La Roche Ltd. There are no other activities related to commercial companies. The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Distribution of the WHOQOL-BREF subscales at baseline of study participants compared to normative data
Fig. 2
Fig. 2
Change over time for the SIPP-RS and the IBM-FRS
Fig. 3
Fig. 3
The relationship between the IBM-FRS and the clinical outcomes at baseline. The grey surface represents the 95% CI

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