Annie Madden1, Max Hopwood1, Joanne Neale1,2, Carla Treloar3. 1. Centre for Social Research in Health, UNSW Sydney, Sydney, NSW, Australia. 2. National Addiction Centre, Kings College London, London, UK. 3. Centre for Social Research in Health, UNSW Sydney, Sydney, NSW, Australia. c.treloar@unsw.edu.au.
Abstract
BACKGROUND: Growing international interest in mechanisms to capture and measure experiences and outcomes of health interventions from the patient perspective has led to the development of patient-reported measures (PRMs) across many areas of medicine. Although PRMs are now well utilised in some settings, the rapidly expanding area of direct-acting antiviral (DAA) treatments for hepatitis C has received remarkably little attention. In addition, questions are also being raised about the extent to which patients have been involved in the development of PRMs, which are primarily designed to reflect the patient perspective. In this context, the aim of this paper was to explore the possibility of developing a new PRM for use in hepatitis C DAA therapy that would also be acceptable to the patient group, in this case people who inject drugs (PWID). METHOD: The study was based on a participatory design that included a peer researcher and foundational qualitative research including semi-structured interviews with 24 PWID with hepatitis C to inform the development of the PRMs. Stage 2 included four focus groups of six PWID with hepatitis C, who were asked to complete the draft measures and provide feedback. RESULTS: Participants responded positively to the draft PRMs. The results indicate that participants' concerns during DAA treatment are often not sufficiently attended to in clinical settings. In the light of this finding, participants reported that PRMs have a positive role to play in the negotiation of patients' care during DAA treatment. CONCLUSIONS: The findings show that utilising a participatory approach to the development of PRMs for DAA HCV treatment with PWID not only provides a way to measure experiences and outcomes of treatment from the patient perspective, but also provides a means for highly marginalised patient groups to have a say in and negotiate their care in ways that might not otherwise be possible.
BACKGROUND: Growing international interest in mechanisms to capture and measure experiences and outcomes of health interventions from the patient perspective has led to the development of patient-reported measures (PRMs) across many areas of medicine. Although PRMs are now well utilised in some settings, the rapidly expanding area of direct-acting antiviral (DAA) treatments for hepatitis C has received remarkably little attention. In addition, questions are also being raised about the extent to which patients have been involved in the development of PRMs, which are primarily designed to reflect the patient perspective. In this context, the aim of this paper was to explore the possibility of developing a new PRM for use in hepatitis C DAA therapy that would also be acceptable to the patient group, in this case people who inject drugs (PWID). METHOD: The study was based on a participatory design that included a peer researcher and foundational qualitative research including semi-structured interviews with 24 PWID with hepatitis C to inform the development of the PRMs. Stage 2 included four focus groups of six PWID with hepatitis C, who were asked to complete the draft measures and provide feedback. RESULTS:Participants responded positively to the draft PRMs. The results indicate that participants' concerns during DAA treatment are often not sufficiently attended to in clinical settings. In the light of this finding, participants reported that PRMs have a positive role to play in the negotiation of patients' care during DAA treatment. CONCLUSIONS: The findings show that utilising a participatory approach to the development of PRMs for DAA HCV treatment with PWID not only provides a way to measure experiences and outcomes of treatment from the patient perspective, but also provides a means for highly marginalised patient groups to have a say in and negotiate their care in ways that might not otherwise be possible.
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