Guidance around childhood cancer must address both the biomedical and psychosocial components of the disease for both the child and their family, says Dr. Lori Wiener, chair of the Pediatric Special Interest Group at the American Psychosocial Oncology Society (APOS).
The positive benefits of this more holistic approach to pediatric cancer care is gaining traction within the medical profession and the advocacy space following the recent publication of the Standards for Psychosocial Care of Children With Cancer and Their Families – a collaborative venture of pediatric oncology psychosocial professionals, parent advocates and experts from relevant disciplines.
Although the interests of APOS lie more broadly in addressing the psychological, social, emotional and spiritual needs of all people living with cancer and their family members, its interest in pediatric psychosocial care was fueled by the experience of Vicki and Peter Brown who lost their only child to a very aggressive form of osteosarcoma.
“The family recognized how critically important psychosocial care is and needs to be for children and their families from the day of diagnosis, through treatment, survivorship, end of life and bereavement care and we wanted to ensure all families were able to receive this level of support. Vicki and Peter Brown formed The Mattie Miracle Cancer Foundation in memory of their son Mattie (above), with the ambition of ‘addressing the psychosocial needs of children and families living with childhood cancer, as well as educating healthcare providers on the impact of such a diagnosis.’ Their motto is ‘It’s not just about the medicine’,” Wiener notes.
In 2012, the organization sponsored a symposium and briefing on Capitol Hill to raise awareness of the need for universal psychosocial support and services in pediatric cancer care, with the help of traumatic stress specialist Anne Kazak.
While the Congressional briefings were “highly successful,” Wiener comments, it became clear in conversations with members of Congress that if they were to convince cancer centers to change current practice and earn legal and government support for the initiative, there was a need to develop professional standards underpinned by a robust evidence base.
And so began a systematic review of the literature – more than 1,200 studies – as well as meta-analyses, consensus reports and recommendations from professional organizations. “This substantial effort,” Wiener comments, “culminated in 15 standards designed to ensure children with cancer and their family members receive the highest quality of psychosocial care from the time of diagnosis, through the course of their illness and treatment and beyond, whether that’s to survivorship, end of life or bereavement for the family.”
“As a result of developing these professional tools, there is now far greater awareness of psychosocial services and the availability of standards of care in this area,” Wiener adds. “These standards have enabled individual sites to evaluate their own performance, to implement the standards if they had not already done so and to recognize there may be barriers to implementation and how these could be overcome.”
“In addition, we now have 11 professional organizations and associations that publicly endorse the standards,” says Wiener, “which goes a long way to making sure every cancer treatment center and all relevant advocacy groups are well equipped to ensure every child and family has the optimal care possible.”
“With evidence that such care contributes to positive quality of life outcomes, it is hoped that universal access to psychosocial support and intervention can be guaranteed for future patients and family members facing childhood cancer.”
To find out more about how the Standards were developed, please read our recent Best Practice: The Psychosocial Standards of Care Project for Childhood Cancer.