Within Australia and New Zealand (ANZ) there is limited evidence regarding the experience and satisfaction across the healthcare system of people living with multiple myeloma (MM). We aimed to quantify the patient experience across the healthcare system to help identify potential areas of the healthcare pathway that could be targeted for improvement to maximize patient satisfaction.

A 30- to 40-minute online survey was completed by adults in ANZ diagnosed with MM. Anchored best-worst scaling (ABWS) is a technique that takes advantage of an individual’s ability to reliably identify extremes (‘best’ and ‘worst’) in sets of items, eliciting discriminating rankings free of scale bias. This study implemented a novel anchoring process to rescale importance and satisfaction best-worst scores for factors across the MM healthcare pathway, which could be compared and combined to form a patient experience index (PEI). There were 15 factors or ‘moments that matter’ (MTM), each describing a different aspect of the patient journey, such as time to diagnosis, treatment logistics, and side effects. The MTM were derived from qualitative research with patients as well as a workshop with key opinion leaders. Additional survey questions were included to help identify potential ways to improve patient satisfaction.

The results were based on 62 patients with MM. The overall median PEI score was 63.1. The top three MTM that were most important to patients, but they were least satisfied with (calculated by combining the top four of each most important/least satisfied factor for each participant), were side effects of medication, effectiveness of medication, and medication access.

The findings from this research contribute to the understanding of patient experiences of treatment and care for MM. The results can inform healthcare decisions for prioritizing interventions that align with patient experiences. In the future, the study could be executed longitudinally to assess shifts in satisfaction within the MM healthcare journey, which would be especially worthwhile if new programs are implemented to improve patient satisfaction.

Allocating government resources for drug treatments continues to be a challenge in health care, particularly given the increasing number of high-cost personalized drug treatments, finite resources, and aging population. Since taxpayers fund government health budgets, it is important to understand how they think funding should be distributed, considering attributes such as cost of drug treatments, risk of dying, commonality of medical conditions, and quality of life changes with drug treatments. The aim of this study was to understand what attributes of a medical condition and treatment determine a community’s willingness to fund new drug treatments. Two decision-making contexts were explored: the allocation of funds from a health budget and a willingness-to-pay (WTP) perspective.

A representative sample of 500 Australian adults completed an online survey. The survey comprised two discrete choice experiments (DCEs) with different framing: an allocation of government funds and a WTP for drug treatments. The government allocation DCE allowed a choice between two hypothetical alternatives, each describing the medical condition and the drug treatment, while the WTP for funding showed one hypothetical alternative with an option to not fund the drug treatment. Seven DCE attributes, informed by a literature review, were displayed in each choice set relating to the medical condition (risk of dying, prevalence, and ages affected) and to the drug treatment (change in quality of life, additional life-years, availability of other drug treatments, and cost to the government and the taxpayer).

The resulting DCE model will establish the funding prioritization choices made by the general community. We expect changes in quality of life and risk of dying to be very important attributes. Of key interest for this study is how the difference in the decision-making context impacts preferences. We expect taxpayers to employ a stricter rule set in funding decisions when paying out of pocket (WTP exercise).

The findings from this research have implications for decision makers when aligning funding decisions with community preferences and values.