Improving quality of life after childhood cancer
An Australian first study into childhood Acute Lymphoblastic Leukaemia (ALL) has provided insights into the ongoing impacts of treatment for children and their families over a 12 month period.
Published in the prestigious journal, BMC Cancer, the study monitored children and their families monthly during their first year of treatment to map the impacts of treatment, quality of life and emotional wellbeing over time.
Acute Lymphoblastic Leukaemia is the most common childhood cancer and is caused when the bone marrow makes too many immature lymphocytes (a type of white blood cell).
As the major ALL treatment programs used across Australia have similar survival rates for children, the study set out to generate data about the health-related quality of life impacts, emotional impacts and cost impacts of each of the treatment programs. The data from this study will be used to better inform future decision-making and treatment planning for both clinicians and families.
Dr Toby Trahair, study author and Staff Specialist in Paediatric Haematology/Oncology in the Kids Cancer Centre at Sydney Children’s Hospital, Randwick, says while Australian children with ALL experience high survival rates (over 90 percent for most children), it is important to look at the overall impact on quality of life across the whole of ALL treatment.
“Measuring quality of life throughout childhood cancer treatment helps us to understand in what areas children and their families may need the most support, so healthcare providers can better respond to needs and improve quality of life.”
“For a disease where treatment rates are very high, it’s also important for us as oncologists and cancer clinicians to focus on what we can do to improve the experience of treatment and to reduce side effects where we can, particularly devastating long-term side effects.”
While previous research has shown treatment for ALL can contribute to poor quality of life for children and their families, this research is the first to demonstrate consistently poor quality of life through the first year of treatment in a national context.
Dr Trahair says a focus on psychosocial care is needed from the outset of diagnosis to make sure families feel well supported, and to better acknowledge the trauma associated with childhood cancer treatment.
“While it is encouraging to see a broad improvement in parents’ emotional well-being and children’s quality of life over time, at the end of the first year of treatment, these are still consistently below that of the population norm. From that perspective, we need to do better to find ways to reduce the impact of cancer care on families.”
Common causes of distress for children and their families were side effects of treatment including pain, nausea and vomiting, experiencing long-term severe treatment toxicities like blood clots, pancreatitis and bone toxicity and medical procedures.
“It’s pretty traumatic when your child is diagnosed with cancer. There are a lot of potential treatment-related side effects that can occur and for some, these impacts can be lifelong and life-changing,” Dr Trahair said.
“For a lot of families, even many years after diagnosis, there’s a sense of post-traumatic stress. A lot of families find coming back to the hospital for routine check-ups really stressful, because it brings back up a lot of difficult feelings and emotions.”
The Child Life and Music Therapy team across the Network help to minimise the stress and anxiety that hospitalisation may cause, supporting children and young people to cope better with illness and hospitalisation through the use of play, music, education and self-expression activities.
“They play an important role in the overall treatment plan, providing non-pharmacologic ways to help intervene, so again, using this research as clinicians and oncologists we can look at how we can better use their services throughout treatment,” Dr Trahair said.
The study will now continue to follow children and their families for five years after the child’s diagnosis, building on preliminary results.
The research team hope to soon be able to use multiple years of data to look at children’s quality of life and parents’ emotional wellbeing, as well as to better predict patients at higher risk of severe treatment-related toxicities, to ultimately improve quality of survival after childhood cancer.
The study, led by UNSW PHD students Clarissa Schilstra and Dr Karen McCleary, is a national collaboration between the Kids Cancer Centre, Sydney Children’s Hospital, the Behavioural Sciences Unit, UNSW and Children’s Cancer Centres across Australia and New Zealand.
Funding was provided by The Anthony Rothe Memorial Trust, The Kids Cancer Alliance, the Kids to Adults (K2A) Clinical Academic Group, The Kids Cancer Project, The Cancer Institute NSW, the Royal Australasian College of Physicians - Kids Cancer Project Research Entry Scholarship and the Cancer Therapeutics CRC (CTx) PhD Clinician Researcher Top-Up Scholarship.