One of the first studies in the world into the psychosocial implications of precision medicine for children, their families and health care is underway by Luminesce Alliance researchers.
While precision medicine improves treatment options and potentially improves clinical outcomes, parents’ understanding may be limited and they may have unrealistic expectations of the potential benefits. The psychosocial implications of precision medicine have rarely been studied before.
International research shows that psychosocial factors may influence up to 30 percent of the long-term morbidity of children with physical illnesses. That is because patients’ and families’ experiences, understanding and communication around treatment are key to health outcomes as well as their level of satisfaction.
Luminesce Alliance funding supported a pilot trial of the Zero Childhood Cancer Program (ZERO) called TARGET to gain an in-depth understanding of the experiences of all stakeholders involved in precision medicine, including parents, their child’s healthcare providers, and the scientists who conducted the laboratory research.
Uniquely, our new study of the psychosocial implications of the ZERO national clinical trial, called PRISM-Impact, has been gathering longitudinal data over five years, so it is possible to identify how experiences change and when new issues emerge.
This world-first data on the participants’ psychological function, wellbeing and quality of life will inform targeted resources and support to enable patient-centred, holistic care, says Prof Claire Wakefield, of the School of Women’s and Children’s Health at the University of New South Wales.
“If parents aren’t coping, that flows onto the child. Ultimately, we would like every family to feel well informed and confident that they know what’s happening and also to feel well supported, no matter what language they speak or where they live,” she says. “It’s not about taking away their sadness and grief but making sure they have the support they need from the moment of diagnosis to the long term, when they go home.”
Meeting the psychosocial needs of children and families
The research found that, as would be expected, parents experience high levels distress around the time of their child’s diagnosis. However, for some this does not resolve long term, and parents are often unable to attend to their own emotional needs when their child is so sick. It also found that some parents had a lack of understanding and awareness of precision medicine, and unrealistic expectations of what it could achieve. If these problems are not addressed, families enrolled in precision medicine trials are at increased risk of long-term distress, and may experience regret, mental health conditions, relationship and family problems, and poorer health outcomes. The insights and that has been collected is being translated into a range of resources such as brochures, videos and telehealth support that are accessible to families whenever they need them during this difficult time in their lives.
The study also gathered the world’s first data from children themselves, whose distress levels are hard to capture while they are so unwell. An initial survey of children aged 12 and over is providing unique insights into the needs of children having these revolutionary new treatments.
The research is also asking healthcare professionals and scientists about their experiences of providing precision medicine. Participants have identified a recurring problem when caring for families in how to communicate realistic expectations of treatment while maintaining hope.
“Having difficult conversations can be a real burden for health professionals, and not all of them may be aware of the trials the patients are enrolled in,” says Dr Kate Hetherington, of the School of Women’s and Children’s Health. “Many of them were amazed to be asked about the new developments in their work and how they feel about them; it’s unique for them to have this opportunity to feel heard, and it will be important for the implementation of precision medicine.”
The PRISM-Impact trial is now being expanded, and more research is underway into the experiences of non-English speaking and Aboriginal families.
“This work is a way of translating the intention of the health system into families’ experiences of it – of ensuring families get the best experiences possible, even when their child is unwell,” says Prof Wakefield. “The interventions we will design are low cost but have a big gain. They will lead to better outcomes for decades, rather than ongoing problems for the rest of patients’ lives.”