Original article
Measuring the health-related quality of life in Australians with multiple sclerosis using the assessment of quality of life-8-dimension (AQoL-8D) multi-attribute utility instrument

https://doi.org/10.1016/j.msard.2020.102358Get rights and content

Highlights

  • We are first to assess HSUVs and their physical and psychosocial drivers in Australians with MS.

  • The paper quantifies the impact of MS-related disability on HSUVs, and the physical and psychosocial health.

  • A significant negative association exists between HSUVs/dimensional scores and MS-related disability.

  • MS substantially impacts the independent living, pain, relationships, self-worth, and coping.

  • The study advocates for increased and targeted support to improve HRQoL in MS.

Abstract

Background

Health-related quality of life (HRQoL) has not been assessed in Australians with multiple sclerosis (MS) using a preferentially sensitive multi-attribute utility instrument.

Objectives

To assess HRQoL and to quantify the impact of disability on health state utility values (HSUVs), and the physical and psychosocial health of people with MS using the Assessment of Quality of Life-8-Dimension (AQoL-8D) instrument.

Methods

We estimated HSUVs and the unique composite individual and super dimensional (physical and psychosocial) scores of the AQoL-8D for a large, representative sample (n=1,577) of Australians with MS. The estimates were compared to Australian general population norms and broken down by disability severity, classified as no disability (Expanded Disability Status Scale [EDSS] level: 0), mild (EDSS: 1-3.5), moderate (EDSS: 4-6) and severe (EDSS: 6.5-9.5). A multivariable regression model adjusted the association between MS disability severity and HSUVs for age, sex, MS onset type, DMTs usage status, and MS duration. Results: Mean overall HSUV at 0.61 (95% confidence interval [CI]: 0.60-0.62) was 0.18 units lower than the Australian population norm. HSUV decreased with increasing disability severity: 0.81 (95% CI: 0.80-0.83), 0.65 (95% CI: 0.63-0.67), 0.54 (95% CI: 0.52-0.56) and 0.48 (95% CI: 0.46-0.50) for no, mild, moderate and severe disability, respectively. The mean Physical super-dimension score of 0.57 (95% CI: 56-0.58) was 0.21 units lower than the Australian norm and the Psychosocial super-dimension of 0.33(95% CI: 32-0.34) was 0.16 units lower. Lower HRQoL was primarily driven by reduced scores on Independent living (-0.23), Pain (-0.15), Relationships (-0.13), Coping (-0.12), and Self-worth (-0.12).

Conclusions

MS impacts all aspects of HRQoL. Effective pain management and support to maintain independent living, relationships, and self-worth can significantly improve the HRQoL of people with MS. Early diagnosis and affordable access to effective treatments to slow or prevent disability accumulation may also be helpful.

Section snippets

Background

Multiple sclerosis (MS) is a complex autoimmune/neurodegenerative disease in which the myelin sheath covering nerve fibres in the central nervous system (brain, optic nerves and spinal cord) is damaged, leading to increasing disability over time due to impairment of many neurological parameters including cognitive, motor and sensory functions (Buchanan and Huang, 2012). MS has a substantial effect on health and wellbeing, as it affects both physical and psychosocial aspects of the life, (

Study design

The Australian Multiple Sclerosis Longitudinal Study (AMSLS) is a large national representative sample of Australian people with MS. (Taylor et al., 2013) Australian residents, minimum 18 years of age with a diagnosis of MS are eligible to join. In April 2016, there were 3,163 active AMSLS participants who were invited to report their AQoL-8D profiles as part of the Economic Impact Survey (EIS) 2016 of the AMSLS, with N=1,577 (49.9%) participants responding (1,112 online, and 465 paper-based).

Clinical and sociodemographic characteristics of the sample

Mean age of respondents was 55.5 years, with almost three-quarters aged between 35 and 64 years. The mean MS duration since diagnosis was 15.3 years and approximately four out of five respondents were female (Table 1). Over half of the respondents were in the moderate and/or severe disability categories, with 21% and 25% in the no disability and mild disability categories, respectively. At the time of survey, 908 (58%) respondents were using DMTs and more than three-quarters of the respondents

Discussion

In this nationally representative study, we found that MS impacted all facets of HRQoL of people with MS, most importantly, the independent living, pain, relationships, self-worth and coping. We also found that a significant negative association exists between HSUVs of people with MS and their disability severity. In particular, the mean HSUV in people with MS (0.61) was 0.18 units lower than that seen in the age/sex standardized Australian population (0.79). Those with no disability had an

Conclusions

We have demonstrated that increasing disability in MS was negatively associated with all aspects of HRQoL. A significant negative association between the mean HSUV and disability severity remained even after taking other factors into account. Therefore, interventions to slow or prevent disability progression may have the potential to improve HRQoL of people with MS. Based on our findings, lower scores in the health domains of Independent Living, Pain, Coping, Relationships, and Self-worth

Funding source

This study was supported by an unconditional grant provided to MS Research Australia by Merck Australia, and publication of study results was not contingent on the sponsor's approval or censorship of the manuscript.

Credit author statement

HA conceptualized the study, collaborated in the design and implementation of the study, collected/analysed the data and wrote the manuscript.

IvdM collaborated in the design of the study, and data collection, and critically reviewed and edited the manuscript.

BT collaborated in the design of the study and critically reviewed the paper.

JC helped in extracting data from previously published HSUV studies and reviewed the paper.

AP conceptualized the study, collaborated in the design of the study,

Declaration of Competing Interests

Authors declare no conflict of Interest

Acknowledgements

We would like to acknowledge the time and continuous support from the participants of the AMSLS in responding back to all surveys. We also thank Mr. Petr Otahal (Statistical Officer, Menzies Institute for Medical Research, University of Tasmania) and Miss Ting Zhao (PhD candidate [Health Economics] Menzies Institute for Medical Research, University of Tasmania) for their help and feedback in ensuring the appropriateness of our statistical analyses.

References (41)

  • J Richardson et al.

    Modelling utility weights for the assessment of quality of life (AQoL)-8D

    Qual. Life Res.

    (2014)
  • JA Campbell et al.

    A head-to-head comparison of the EQ-5D-5L and AQoL-8D multi-attribute utility instruments in patients who have previously undergone bariatric surgery

    Patient Patient Cent. Outcomes Res.

    (2016)
  • LI Berrigan et al.

    Health-related quality of life in multiple sclerosis Direct and indirect effects of comorbidity

    Neurology

    (2016)
  • F Moore et al.

    Two multiple sclerosis quality-of-life measures: comparison in a national sample

    Can. J. Neurol. Sci.

    (2015)
  • G Kobelt et al.

    Costs and quality of life in multiple sclerosis a cross-sectional study in the United States

    Neurology

    (2006)
  • G Kobelt et al.

    Costs and quality of life of patients with multiple sclerosis in Europe

    J. Neurol. Neurosurg. Psychiatry

    (2006)
  • G Kobelt et al.

    New insights into the burden and costs of multiple sclerosis in Europe

    Mult. Scler. J.

    (2017)
  • R Karabudak et al.

    Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from Turkey

    J. Med. Econ.

    (2015)
  • K Karampampa et al.

    Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from five European countries

    Mult. Scler. J.

    (2012)
  • K Karampampa et al.

    Treatment experience, burden, and unmet needs (TRIBUNE) in multiple sclerosis: the costs and utilities of MS patients in Canada

    J. Popul. Ther. Clin. Pharmacol.

    (2011)
  • Cited by (13)

    • Evaluating the impact of the Understanding Multiple Sclerosis online course on participant MS knowledge, health literacy, resilience, self-efficacy, quality of life, and MS symptom severity

      2022, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      Multiple sclerosis (MS) is a chronic neurodegenerative disease that gradually impairs central nervous system function, leading to a wide range of symptoms (Wilkins, 2017). MS disease duration often exceeds 20 years, and the condition can result in severe disability and reduced quality of life for people living with MS (PwMS) (Wilkins, 2017, Ahmad et al., 2020). Consequently, MS requires effective disease management, including pharmacological interventions and/or non-pharmacological symptom management approaches (Ahmad et al., 2020).

    • Prospective associations of better quality of the diet with improved quality of life over 7.5 years in people with multiple sclerosis

      2022, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      Multiple sclerosis (MS) is a progressive demyelinating condition of the central nervous system, with clinical progression having a significant negative impact on health and wellbeing in people affected. Many of the negative effects of the clinical manifestations of MS, including disability, fatigue, and relapse(Ahmad et al., 2020; Amato et al., 2001), as well as the secondary effects like reduced/lost employment and reduced independence(Baumstarck et al., 2015; Miller and Dishon, 2006), on quality of life (QoL) are minimally modifiable. There is, however, evidence that modifiable lifestyle factors might have a beneficial impact on clinical progression and on QoL in people living with MS (plwMS) (Marck et al., 2014, 2021; Simpson-Yap et al., 2021a; Taylor et al., 2018).

    • Association between MS-related knowledge, health literacy, self-efficacy, resilience, and quality of life in a large cohort of MS community members: A cross-sectional study

      2021, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      Our regression models support the associations above; living with MS was associated with greater MS knowledge, and lower HL, resilience, and QoL. These findings support previous work demonstrating that QoL is negatively affected by living with MS (Ahmad et al., 2020). We found that a higher education level was associated with higher MS knowledge and HL scores on one of the nine subscales.

    • Does health-related quality of life differ between people with relapse onset and progressive onset Multiple Sclerosis?

      2021, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      The AQoL-8D's comprehensive classification system and algorithm enables the capture and assessment of billions of separate health states (2.4 × 1023) compared to, for example, the EQ-5D-3L and EQ-5D-5L that only measure 243 and 3,125 separate health states, respectively (Supplement 1) (Campbell et al., 2016). HRQoL impacts in overall samples of people with MS have been well researched in Australia, Europe and other parts of the word using a wide range of client-reported, generic, and disease-specific MAUIs (Berrigan et al., 2016; Moore et al., 2015; Kobelt et al., 2006; Kobelt et al., 2006, 2017; Karabudak et al., 2015; Karampampa et al., 2012, 2011, 2013; Wollin et al., 2010, 2013; Ahmad et al., 2017, 2020; Kobelt et al., 2017). However, similar research in sub-groups of MS types is scarce.

    View all citing articles on Scopus
    View full text