Key result
In patients with post-polio syndrome, psychological health-related quality of life significantly decreased over 6 months (mean difference -4.48), while self-reported physical impairments and objectively measured motor function remained stable.
Why the study?
No study had comprehensively analysed how patient-reported outcome measures are associated with objectively assessed physical function in patients with post-polio syndrome.
Observational (n=27)
No
Mean Difference: -4.48 (95% CI -8.86–-0.09)
Absolute Event Rate: 72.38% vs 76.85%
p-value: p=0.05
In patients with post-polio syndrome, objectively measured walking and motor abilities do not fully reflect patient-reported quality of life and impairments, highlighting the need for comprehensive assessments.
Findings should not yet change post-polio monitoring; leaves open whether integrated PROs add value beyond objective measures.
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.
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Gocheva et al. (2020) conducted an observational in Post-polio syndrome (n=27). 6-month follow-up vs. Baseline was evaluated on Change in HRQOL psychological health domain (MD -4.48, 95% CI -8.86, -0.09, p=0.05). In patients with post-polio syndrome, psychological health-related quality of life significantly decreased over 6 months (mean difference -4.48), while self-reported physical impairments and objectively measured motor function remained stable.
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