Still Lost in Transition? Perspectives of Ongoing Cancer Survivorship Care Needs from Comprehensive Cancer Control Programs, Survivors, and Health Care Providers
2. Materials and Methods
3.1. Quantitative Survey Results
3.1.1. Awareness of the NCSRC
3.1.2. Information Needs of Cancer Survivors and Caregivers
3.1.3. Information Needs of Health Care Providers
3.1.4. Information Needs of the Policy and Advocacy Community
3.2. Qualitative Focus Group and Key Informant Interview Themes
3.2.1. Cancer Survivor and Caregiver Information Needs
“I’ve had countless calls with patients…it comes almost every time that they finish treatment. They’ll call for that last follow-up and they’re like…I feel so anxious. I’m finally processing all of this and I’m worried about my well-being and recurrence. They get very anxious about recurrence at the end of treatment, because they don’t want to go through what they just went through again.”—Patient Navigator (KII)
“Eating healthy. What does that mean? There are so many people that whether they have cancer or not, they don’t eat healthy diets. I don’t know if maybe they don’t understand it or they can’t afford it, or they don’t know how to prepare anything from scratch…A lot of people, they’re not feeling too whippy [energetic] or they’re depressed…and so they eat prepared food and stuff out of a can. That’s hard to address.”—Survivor (KII)
“How is it that I structure my life relationally as a female, a mom, a wife, a grandma? All of my roles have just been up in the air and nobody knows what to do with me. I can’t do the things that I used to do. There is the matter of sexuality. There is the matter of trying to reintegrate in a new way…There are just so many things…The relational quality of life is just left out there.”—Survivor (KII)
3.2.2. Health Care Provider Information Needs
“I think most primary care docs…would say, ‘I think survivorship from a health care standpoint and from delivering health care is the responsibility of oncology and who delivered the cancer care.’ I think that there is going to be first a level of education that might be needed of saying, ‘No, primary care, these patients, once they’re cured from cancer…survivorship [is] actually an area of health care where you’re reengaged.’ I think the reason why there is that strong thought process…[among PCPs is that] when patients get diagnosed with cancer, all of a sudden…we [in primary care] don’t see them anymore. We don’t see them until, all of a sudden, one day they’re on our schedule again.”—HCP (KII)
3.2.3. Comprehensive Cancer Control Program Needs
3.2.4. Optimizing Survivorship Resources
3.2.5. Dissemination of Survivorship Resources: Reaching Survivors and HCPs
Limitations and Strengths
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Content||Consider health literacy level of different communities||“Every clinic varies in terms of their socioeconomic profile. A lot of my patients might not be able to read this because they can’t read, and then for others it might be just a little bit a tad too long.”—HCP (KII)|
|The simpler and shorter the better, for both survivors and HCPs||“I think that the simpler that you can make it, the better, is my feedback on that just from what I’ve seen with patients. I think just really concise and to the point, efficient, and easy for them to read.”—Patient Navigator (KII)|
“Those are nice things and purposely keeping it really simple and a checklist and stuff like that. Providers need that more in a sense of because they just have so much going on at any point in care.”—HCP (KII)
|Material & Web Design||Survivors appreciated relatable quotes/pictures and emotional connection with content||“Oh, my gosh, I felt like somebody understood me when I read some of those quotes.”—Survivor (KII)|
“I liked that at least three of the major pictures showed a person in a relationship. There was physical touch…That was an effective and emotional connection with this information, because of those pictures and quotes.”—Survivor (KII)
|Online materials should be easy to find and navigate||“There are a lot of good materials that have been developed, but it’s not always easy to remember where. It’s having to remember that resource center, George Washington, or CDC has got tools…You’ve kind of got to remember where the source is in order to find them.”—Policy Focus Group |
“The more people can hone in on what they’re looking for and find it with as few clicks as possible, the better.”—HCP Focus Group
|Source||Credibility of the source matters||The American Cancer Society and George Washington Cancer Institute “mean a lot to patients or to providers and so the credibility is really helpful.”—Survivor Focus Group|
|Reaching Survivors||Reaching HCPs|
|1. Survivors identified HCPs as their first and most trusted source for survivorship information.||1. Focus group participants noted how difficult it can be to connect with HCPs and help them prioritize survivorship. |
|2. Many participants said it was common for survivors to search for health information on the Web. ||2. HCPs reported using a variety of channels to access survivorship information.|
|3. Several participants noted the importance of timing information and considering the amount of information so as to not overwhelm survivors. ||3. Several participants highlighted the importance of ensuring that survivorship materials be disseminated to HCPs other than oncologists (e.g., primary care nurses, social workers, cancer support groups, and family services).
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Ross, L.W.; Townsend, J.S.; Rohan, E.A. Still Lost in Transition? Perspectives of Ongoing Cancer Survivorship Care Needs from Comprehensive Cancer Control Programs, Survivors, and Health Care Providers. Int. J. Environ. Res. Public Health 2022, 19, 3037. https://doi.org/10.3390/ijerph19053037
Ross LW, Townsend JS, Rohan EA. Still Lost in Transition? Perspectives of Ongoing Cancer Survivorship Care Needs from Comprehensive Cancer Control Programs, Survivors, and Health Care Providers. International Journal of Environmental Research and Public Health. 2022; 19(5):3037. https://doi.org/10.3390/ijerph19053037Chicago/Turabian Style
Ross, Leslie W., Julie S. Townsend, and Elizabeth A. Rohan. 2022. "Still Lost in Transition? Perspectives of Ongoing Cancer Survivorship Care Needs from Comprehensive Cancer Control Programs, Survivors, and Health Care Providers" International Journal of Environmental Research and Public Health 19, no. 5: 3037. https://doi.org/10.3390/ijerph19053037