Quality care involves more than just medical treatment: Improving patient-provider communication

Adult survivors of childhood cancer have many health-related needs that go beyond medical treatment.

Published: 8/1/16

Doctor speaking to older couple

Adult survivors of childhood cancer have many health-related needs that go beyond medical treatment. These emotional, support, and information needs may not be met because of poor communication between survivors and health care providers. This study looked at a broad range of needs that survivors may have and came up with a new way to improve patient-provider communication.

The research team was led by Dr. Cheryl Cox of St. Jude Children’s Research Hospital. The team analyzed responses from 1189 participants who completed the LTFU Study Needs Assessment Questionnaire. They looked at 77 specific health-related needs.

Care/support and coping needs. Care and support needs included help getting clinic appointments and appointments with specialists, knowing who to call, and having a say in decisions. Coping needs included needing help coping with the future, with body image issues, and with moving on with life.

Emotional needs included needing help to manage emotions such as worry, anxiety, depression, uncertainty about the future, fears about pain, and loss of emotional control.

Information/communication needs included:

  • Needing information about cancer and late effects, including what specific conditions can result from cancer therapy and what symptoms should be reported.
  • Concerns about interacting with the health care system, such as knowing who to call for help, how to arrange for providers to coordinate health care, how to be treated like a person not just a case.
  • Needing information about recommended health care screenings, including what screening tests are needed and why, how to prepare for tests, etc.

One quarter of the participants reported they had no unmet health-related needs; half had fewer than 10 needs; but one quarter had 40 or more unmet needs. Survivors who were likely to report many unmet needs included those who were diagnosed between the ages of 5 and 14, those who received radiation therapy, and those who were very anxious/fearful about cancer and treatment. People with a childhood diagnosis of leukemia or lymphoma and those who reported their health as good, fair, or poor (compared to very good or excellent) were also likely to have many unmet needs.

What does this mean for you? 

Patients report that they want their providers to ask about their needs but may hesitate to bring them up. Providers are often focused on current, specific health conditions and may not be trained or encouraged to discuss these health-related needs. Empowered survivors can get help with their health-related needs by talking about them with their providers, though this can take some courage!

Additionally, Dr. Cox suggests that a needs assessment form similar to the one used for this study could be developed and added to survivorship care plans to help providers and survivors better communicate about health-related needs.

Citation

Cox CL, Zhu L, Ojha RP, et al. The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies. J Cancer Surviv 2016, 10:743-758.