Coleman Supportive Oncology Collaborative for Children with Cancer

The Supportive Oncology Collaborative for Children with Cancer is focused on improving the process for assessing and delivering psychosocial and supportive care to children with cancer and their families.  The Collaborative encourages assessment at the time of diagnosis, and throughout the treatment journey, so that services are available when needed to help alleviate issues during treatment, post-treatment surveillance and through the transition into survivorship.

The initiative seeks to:

  • Improve pediatric/adolescent supportive oncology service delivery;
  • Contribute to the understanding of the landscape of pediatric/adolescent
    supportive oncology practices across Chicago;
  • Identify opportunities for improvement through shared tools, methods and organizational improvements; and
  • Provide additional education on supportive oncology for pediatric clinicians.

Pediatric Cancer

children and adolescents

diagnosed with cancer

annually in the U.S.

survivors of childhood and

adolescent cancer

survivors in Illinois

Most common:

Leukemia, brain tumors, lymphoma, sarcomas, neuroblastoma, Wilms’ tumor, and germ cell tumors.

Many Pediatric Cancers have 70 – 85% Survivorship Rates

(Rates are much lower for rare cancers.)

Pediatric cancer survivors may have both physical and psychological complex health issues as a result of their treatment. For children who received cancer treatment at a young age, long term side effects such as cognitive impairments, impaired fertility, osteoporosis, and early onset metabolic syndrome, as well as secondary malignancies, require knowledgeable practitioners who provide comprehensive care. The need for comprehensive supportive services to address the long-term effects of cancer treatment continues throughout the lifespan.

Objectives

1

Develop a common set of tools to screen for distress throughout the cancer journey

2

Develop a comprehensive list of services based on screenings to help patients and their families access support

3

Educate providers, patients, and payers about benefits of psychosocial screening and service provision.

4

Share findings and tools, and disseminate project results.

Psychosocial Standards of Care for Children with Cancer and Their Families

In 2012, a congressional symposium and briefing was held on Capitol Hill regarding the need for universal services to address the psychosocial needs of children with cancer and their families. The Psychosocial Standards of Care Project for Childhood Cancer was created to develop comprehensive, evidence-based guidelines to meet this need. Project contributors included experts in the field of psychosocial care, children with cancer, and their family members.

The report recommended services, such as:

  • Systematic assessment of psychosocial health care needs
  • Access to psychosocial support and interventions through the cancer journey
  • Assessment of risk of financial hardship and referrals for resources
  • Education and anticipatory guidance regarding disease, treatment, and side effects both short and long term
  • Introduction to palliative care

Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society

In 2015, the National Cancer Policy Forum of the Institute of Medicine (IOM) and the American Cancer Society co-hosted a workshop on to examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life.  The workshop report highlighted that “For children and their families, treating the pain, symptoms, and stress of cancer is as important as treating the disease.” The report stated that supportive services and palliative care should be available in all settings where children receive cancer care—whether inpatient, ambulatory clinic, or at home.

The report recommended services, such as:

  • Discussing prognosis, goals of care, and care transitions
  • Distress management
  • Practical issues (such as family, school, finances, work)
  • Pain and symptom management
  • Transition to survivorship including monitoring of health status, academic, vocational, social, and spiritual pursuits
  • Sensitivity to cultural and spiritual beliefs
  • End of life transitions including grief and bereavement care

Chicago Area Community Service Providers
for patients with cancer and families.