Patient-reported outcomes are worth collecting in resource-limited settings, and not just the easiest ones.
Resource limitations and patient barriers must be considered to ensure equity in access and uptake of patient-reported outcomes (PROs) in clinical cancer care, experts say.
“Minimum access to all before innovation to few” is a primary objective, medical oncologist at the Flinders Centre for Innovation in Cancer Professor Bogda Koczwara told delegates at the Clinical Oncology Society of Australia’s Annual Scientific Meeting in Brisbane last month.
PROs are measures of a patient’s own perception of their health status and outcomes, generally obtained through questionnaires. Their use provides valuable information for hospitals and medical services, but relies on the patient’s ability to accurately report on various aspects of their health and wellbeing.
According to Professor Koczwara, while PROs have proven beneficial across a range of clinical cancer care settings, their uptake tends to favour English-speaking patients with fewer symptoms and easy access to digital technology.
It was important to listen to patients’ views and accommodate personal preferences as much as possible, she said. This included helping those facing technological challenges and engaging with patients to explain the process and outcome goals.
“We call for recognition of what are the core data, the agreement of what is the communication framework within a particular setting, the issue of access, which might be digital versus not, some standards of care, and involvement with patients in the process of PRO delivery,” she said.
Resource limitations have also been identified as a potential roadblock in the reporting process, including limited time, staffing, infrastructure and infrastructure connectivity.
Every system was resource-limited, regardless of the number of resources available, Professor Koczwara noted.
“Every action that we take within 24 hours of our day has some opportunity cost,” she said.
“Even if you have lots of resources, whenever you direct your attention to one thing, that means you are going to forgo something else.
“What are the trade-offs when you’re considering particular action in terms of PRO monitoring? Those trade-offs exist, whichever setting you’re going to find yourself in,” she said.
“Fundamentally, the whole thing about clinical PRO collection is to change behaviours of clinicians and patients and healthcare providers in order to improve outcomes,” said Professor Koczwara. And the way to do that was “one behaviour at a time.”