The Institute of Medicine's National Cancer Policy Forum co-hosted a workshop last week with the American Cancer Society on "Comprehensive Cancer Care for Children and their Families." A formal report out of the meeting is expected to be released in conjunction with September's Childhood Cancer Awareness Month, but we want to share our reflections while the event is still fresh.
A recurring theme throughout the two-day event was the need for integrated, patient-centered care and maximum cooperation among stakeholders. Dr. Joanne Wolfe is a pediatric palliative care clinician at Dana-Farber and served as the Workshop Planning Committee Chair:
The workshop covered a wide range of topics along the spectrum of care from diagnosis through end-of-life care and long-term survivorship.
Perhaps the most compelling discussions were those centered around palliative care and quality-of-life issues. Dr. Lori Weiner of NCI shared that 89% of children who died of cancer experienced "substantial suffering" in the last month of their life.
Education was identified as a big area of need in palliative care: education for families and for providers. Presenters shared research that 45% of parents misunderstand palliative care and consider it to be exclusively end-of-life care. For providers, attendees voiced consensus on the need for better and earlier education on communicating sensitively with families, especially those facing relapse or the end-of-life stage.
Family advocates in attendance shared personal stories that revealed wide quality disparities among pediatric hospice programs, suggesting the need for standardization of end-of-life care services.
See also: Efforts to Instill Empathy Among Doctors is Paying Dividends (Kaiser Health News, 3.12.15)
Knowledge is power: Vicki Sardi-Brown of the Mattie Miracle Cancer Foundation discussed the importance of open and honest communication from the care team, from her perspective as a bereaved parent: "If I understood what [my son's] medical trajectory was, I would have felt more empowered as a parent to make better decisions for him."
Other topics included:
- Patient-reported outcomes: Presenters discussed the discord among patient, parent, and provider reports of pain, with parents and providers not always aware of the degree of suffering experienced by children in all stages of treatment. Researchers emphasized the importance of conversations about priorities early in care, in order to set realistic expectations and discover where the child, parent, and provider may differ in their treatment and outcome goals.
- Funding needs: "The idea that we can do more with less is ludicrous... We will do less research with less resources." - Dr. Peter Adamson, on the need to educate Congress and secure more funding for pediatric cancer research.
- Data collection: Representatives from the pharmaceutical industry presented on methodology in testing new drugs on kids, discussing strategies for better utilizing technology to ask fewer question with greater efficacy.
- Impact of poverty: The final session discussed the reality that children from minority backgrounds or high poverty areas have lower survival rates and are more likely to experience relapse. One presenter, Dr. Kira Bona from Dana-Farber, shared a study that nearly 40% of families in a post-transplant period face food, housing, or energy insecurity.
Perhaps the most memorable remarks came from Melinda Marchiano. Melinda was diagnosed at age 13 with Hodgkin's lymphoma and is now a junior at Pepperdine University, and she bravely shared her story and her struggles with the workshop attendees: "When you're going through treatment, you can't deal with all the emotional issues that it involves... you just become numb. And then afterwards you start to go 'woah, what did I just go through? What just happened?'"
Melinda continues to suffer from late effects of her treatment, including chronic fatigue and "mental fog." She's still learning about her health risks as a survivor. She described survivorship as a 'waiting game': "Are these symptoms going to go away in months? Years? Are some never gonna go away? ...In so many ways, I'm still waiting."