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Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?

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Abstract

Purpose

Understanding the relationship between health-related quality of life (HRQoL) and long-term unmet needs is important for guiding services to optimise life following stroke. We investigated whether HRQoL between 90 and 180 days following stroke was associated with long-term unmet needs.

Methods

Data from Australian Stroke Clinical Registry (AuSCR) registrants who participated in the Australian Stroke Survivor Needs Survey were used. Outcome data, including the EQ-5D, are routinely collected in AuSCR between 90 and 180 days post-stroke. Unmet needs were assessed at a median of 2 years and categorised into: health; everyday living; work/leisure; and support domains. Multivariable regression was used to determine associations between the EQ-5D dimensions and the likelihood of experiencing unmet needs and the visual analogue scale (VAS) (rating 0–100) and number of reported unmet needs.

Results

In total, 173 AuSCR registrants completed the Needs Survey (median age 69 years, 67 % male; 77 % ischaemic stroke). VAS scores were negatively associated with the number of reported long-term unmet needs [irr 0.98, (95 % CI 0.97, 0 99) p < 0.001]. Having EQ-5D activity limitations was associated with unmet living needs (aOR 4.5, 95 % CI 1.1, 18.8). Requiring living supports at 90–180 days was associated with unmet health needs (aOR 4.9, 95 % CI 1.5, 16.1). Those with pain at 90–180 days were less likely to report unmet health (aOR 0.09, 95 % CI 0.02, 0.4) and support needs (aOR 0.2, 95 % CI 0.06, 0.6).

Conclusion

Routinely collected HRQoL data can identify survivors at risk of experiencing long-term unmet needs. This information is important for targeting service delivery to optimise outcomes following stroke.

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Acknowledgments

The Stroke Survivor and Carer Needs Survey was commissioned by the National Stroke Foundation of Australia. We acknowledge the National Stroke Foundation staff members who were involved in survey design and production and contributed to data collection, participant recruitment and report writing. We are also grateful to members of the Advisory Committee and the UK researchers who provided early input into the survey development. We acknowledge Staff from the Florey Institute of Neuroscience and Mental Health who undertook data processing and teleform development and survey design and the Australian Stroke Clinical Registry (AuSCR) staff who assisted with data linkage between the registry and the Needs Survey and collected the AuSCR follow-up data, in particular Francis Kung and Brenda Grabsch. We also acknowledge the hospital staff and the patients who contribute data to AuSCR.

Author information

Authors and Affiliations

  1. Translational Public Health Division, Stroke and Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Clayton, VIC, Australia

    N. E. Andrew, M. F. Kilkenny & D. A. Cadilhac

  2. Florey Institute of Neuroscience and Mental Health, Heidelberg, VIC, Australia

    M. F. Kilkenny & D. A. Cadilhac

  3. Faculty of Health Sciences, La Trobe University, Melbourne, VIC, Australia

    N. A. Lannin

  4. Occupational Therapy Department, Alfred Health, Melbourne, VIC, Australia

    N. A. Lannin

Authors
  1. N. E. Andrew
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  2. M. F. Kilkenny
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  3. N. A. Lannin
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  4. D. A. Cadilhac
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Corresponding author

Correspondence to N. E. Andrew.

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Conflict of interest

The Needs Survey was commissioned and funded by the National Stroke Foundation (NSF). The Trust Company contributed funds via a grant to the NSF. This substudy involving Australian Stroke Clinical Registry participants was funded by an NSF Small Project Grant. Dominique Cadilhac is supported by a National Health and Medical Research Council (NHMRC)/National Heart Foundation Research Fellowship (1063761), and Nadine Andrew is supported by an NHMRC Early Career Fellowship (1072053). The authors have no other known conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individuals that participated in the Australian Stroke Survivor and Carer Needs Survey.

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Andrew, N.E., Kilkenny, M.F., Lannin, N.A. et al. Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?. Qual Life Res 25, 2053–2062 (2016). https://doi.org/10.1007/s11136-016-1234-5

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  • DOI: https://doi.org/10.1007/s11136-016-1234-5

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