OBJECTIVES: Progressive onset multiple sclerosis (POMS) is characterized by continuous neurological worsening from the first onset of symptoms and affects 10-15% of people diagnosed with multiple sclerosis (MS). It remains a severely disabling condition, with a consequent negative impact on the health-related quality of life (HRQoL). Measurement of HRQoL in Australians with POMS using a detailed preferentially sensitive multi-attribute utility instrument (MAUI) has not been performed. Our study aims to assess the HRQoL for different levels of disability in Australians with POMS.

METHODS: We estimated HRQoL (Health State Utility Values [HSUVs] and the unique composite ‘super-dimension’ and ‘individual dimension’ scores [between 0 and 1]) for an updated sample of (n=210) Australians with POMS, using the Assessment of Quality of Life (AQoL)-8D, administered as part of the 2016 Economic Impact Survey (EIS) of the Australian MS Longitudinal Study (AMSLS). Estimates were broken down by disability severity, classified as no (Expanded Disability Status Scale [EDSS] level:0), mild (EDSS:1–3.5), moderate (EDSS:4–6) and severe (EDSS:6.5–9.5).

RESULTS: Mean (95% confidence interval) HSUV for all people with POMS was 0.54 (0.50–0.57). HSUVs decreased with increasing disability severity: 0.78 (0.64–0.93), 0.61 (0.52–0.70), 0.564 (0.51–0.60) and 0.49 (0.464–0.53) for no, mild, moderate and severe disability, respectively. We found substantially lower scores in the health dimensions of independent living, pain, coping, relationships, and self-worth, when compared to Australian norms.

CONCLUSIONS: For the first time in Australia, we have assessed the HRQoL of Australians with POMS using a detailed preferentially sensitive MAUI. The impact of POMS on health and wellbeing is significant and multifaceted, and increasing disability associated with POMS negatively impacts HRQoL. Effective pain management and support to maintain independent living, relationships, and self-worth can substantially improve the HRQoL of people with POMS.