Tailored Survivorship Care Plans May Help Manage Late-Term Side Effects

Tailored survivorship care plans (SCPs) may be beneficial for survivors of head and neck cancer, according to study findings presented during the American Society of Clinical Oncology (ASCO)'s Cancer Survivorship Symposium held February 16-17 in Orlando.

Researchers from Hartford Hospital in Connecticut and Memorial Sloan Kettering Cancer Center (MSKCC) in New York City surveyed survivors and their primary care providers to examine the SCPs acceptability and usefulness.

"Head and neck cancer survivors can be symptomatic with a lot of concern that affect their eating, speaking, breathing, body image and other issues," senior author Talya Salz, Ph.D., who is an assistant attending outcomes research scientist at MSKCC, said in an interview with CURE. "Even these symptomatic patients - mainly who are elderly - are willing to use a computer interface to report their symptoms before a routine survivorship visit."

A platform, called Head and Neck Survivorship Tool: Assessments and Recommendations (HN-STAR), was developed by the researchers. It was created based off guidelines put out by the American Cancer Society and endorsed by ASCO.

Survivors were asked to enter side effects into a computer - either in the waiting room or at home - then a nurse separately entered treatment details.

Survivors reported on 22 late-term side effects prior to routine clinic visits. The most common were dry mouth (70 percent), neck or shoulder stiffness (65 percent), fatigue (65 percent) and insomnia (56 percent). Based on the information entered into the computer system, HN-STAR created an SCP to include a treatment summary, wellness recommendations and management of side effects. A nurse could then discuss the best plan of action with the survivor.

The surveys were completed by 47 survivors, made up of mostly white men who had an oropharynx tumor. The majority (81 percent) of survivors had received multimodality therapy and 51 percent had experienced at least nine of the 22 late-term side effects in the month leading up to the survey.

Ninety-one percent of survivors found the SCP easy to follow and nearly all (98 percent) said they intended to follow the recommendations for side effect management. Similarly, 98 percent said they would refer to the SCP. The survey also revealed that head and neck cancer survivors (87 percent) planned to share their SCP with their primary care provider.

"The idea is that this can help the survivor know who to visit next and help with self-management. And, we saw that they viewed the document very favorably," said Salz.

Surveyed primary care providers (23 patients) were also in favor of tailored SCPs. The researchers determined that 95 percent were satisfied with the SCP and 95 percent said they wanted to have one for every cancer patient.

"We asked, 'How comfortable are you preventing, diagnosing or managing these complicated late effects?' and there was a wide variety in their comfort," said Salz. "It seems like there is room to help primary care providers learn how best to help these complex cancer survivors and that this plan might be able to help them."

SCPs are documents that summarize the cancer diagnosis and treatment and outline an ongoing care of plan for survivors. For instance, it will have the date of diagnosis, contact information of providers and treatment facilities and promotional health strategies for things such as smoking cessation and diet.

The researchers hope to get funding for a multicenter trial to see how well this can be implemented in more clinics.

"This study is one of the first steps in 'does this work?'" said Salz. "Survivors want more information. There is poor coordination of care for survivors and we need to help people move from an acute treatment focused care to survivor focused care."