Responding to Priorities of Unmet Needs for Those Affected by Colorectal Cancer (CRC): Considerations from a Series of Nominal Group Technique Sessions

Fight CRC puts our patient community first. Over the last four years, we surveyed our network to find out more information on the unmet needs of those affected by colorectal cancer. Based on the results, it’s evident that care teams, nonprofit organizations, and policymakers can greatly reduce the stress of colorectal cancer on the patient and their support system once key priorities and concerns are identified. 

This work was recently published in the Journal of National Comprehensive Cancer Network!

By seeking perspectives directly from the patient community, this study has established the foundation necessary for supporting future research, programmatic interventions, and policy initiatives to improve the experience of those affected by CRC.

Study Method

Over a 2 year period, Fight CRC hosted small focus groups that included a mix of colorectal cancer survivors and caregivers. Each group was asked two important questions to get at the heart of their needs:

Question One: What information do you wish you had at the time of diagnosis?

Question Two: What information do you need now as a survivor?

After collecting answers from all participants, the group was asked to rank the top 5 statements from most to least important. If there was any overlap or confusion, they would discuss until everyone agreed.

Results

The responses for question one and question two were categorized into top themes based on the highest-ranking statements for each session.

Top Themes

Question 1: What information and support did patients wish they had at the time of diagnosis?

• Increased communication and coordination with care teams
• Patient navigators were identified as playing a pivotal role in closing this gap.
• Participants felt that the intricacies of a cancer diagnosis and care were not explained well enough.
• Lack of access to colorectal cancer resources

Question 2: What information and support do patients need now?

• Unmet needs for mental and behavioral support specifically for survivors
• Support for families and caregivers is needed through programs tailored to independent needs and unique aspects of caring for colorectal cancer patients.
• Identified caregivers and family members as an integral part of the care team
• Suggested programs tailored to their independent needs while considering the unique aspects of caring for a CRC patient

Common themes identified across both questions:

• Patient indicated needing the following support and resources now and at the time of diagnosis: 
• A better understanding of palliative care, medication adherence, maintenance therapy, and ending curative treatment when diagnosed
• A better understanding of side effects and side effect management is needed at time of diagnosis such as chemotherapy side effects, medical marijuana, medication interactions, and ostomy support.

Recommendations Based on our Findings:

• The development, evaluation, and use of care coordination programs, the incorporation of nurse or lay navigators, and supportive patient-provider communication would optimize relationships and the care experience.
• Collaboration between healthcare providers, advocacy, and patient organizations so patients can access cancer-specific resources and peer-to-peer support at the time of diagnosis.
• Providers are encouraged to screen for psychological stress associated with cancer survivorship, and to quickly triage survivors who need support.
• Patient organizations should develop materials to support caregivers that are culturally sensitive, and cancer-specific.
• Easy-to-read resources should be developed and disseminated, including topics such as: 
  • Palliative care
  • Integrative medicine
  • Family planning
  • Clinical trials
  • Conversation-starters to help initiate complicated discussions between provider and patient   
• Side effect education should be provided to patients and caregivers at multiple points along the cancer continuum

Conclusion

Movements to improve the patient and survivor experience have been gaining momentum over the past decade, and it’s essential to the Fight CRC mission to ensure the CRC community has their needs met. Studies like this help focus our efforts on the concerns most important to patients and caregivers and raise awareness of these issues within the provider and research communities.

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If fighting to meet the needs of the CRC community is something you are passionate about, check out our Advocacy Resources page to find out how to get involved!

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