Head and neck cancer patients are typically asked to follow a fairly intense self-care regimen during and after undergoing radiation therapy. This can include drastically altering their diets to prevent malnutrition, sipping or spraying the mouth regularly with water to prevent dehydration, using salt-soda rinses 8-10 times a day (and/or saliva substitutes) to control xerostomia, practicing multiple daily repetitions of exercises to facilitate return to a normal swallowing, and engaging in intensive oral care routines to control mucositis and prevent dental carries, according to Hoda Badr, PhD, Associate Professor in the Department of Medicine at Baylor College of Medicine in Houston.
"Unfortunately, rates of non-adherence are high," Badr explained. And non-adherence can mean treatment interruptions, complications, and longer and more costly rehab.
So Badr and her colleagues developed a six-session, telephone-based intervention called Spouses coping with the Head And neck Radiation Experience (SHARE) (Cancer 2018; doi:10.1002/cncr.31906). The program teaches self-management, communication, and coping skills to patients with head and neck cancer and their spouses. In a pilot study that included 60 participants, the intervention led to better outcomes for these patients and their spouses compared with standard care (in this case, no intervention about self-management and coping).
Specifically, patients who received the intervention reported fewer physical symptom burdens than those who received standard care. Patients and spouses who received the intervention also reported lower levels of depressive symptoms than those who received standard care.
Here's what Badr told Oncology Times about the intervention, why it was developed, and the potential benefit it could have for patients with cancer.
1 Can you explain why you helped develop the SHARE intervention-and why spouses play such an important role in the program?
"Given the dosage of radiation required to successfully treat head and neck cancer tumors and the sensitivity of the location that is targeted, patients experience side effects (such as mucositis or xerostomia) and functional challenges (such as dysphagia) that make eating, drinking, and communicating an extremely difficult ordeal. Patient quality of life is also adversely affected due to psychological distress, rapid weight loss, dehydration, and malnutrition-[and all of that] is often related to the physical side effects of their treatment.
"For cancer patients who are in an intimate relationship, their partner is often their primary caregiver and research has demonstrated that marital status confers a substantial health benefit among cancer patients.
"An analysis of SEER data for the 10 most common cancers found that, even after adjusting for demographics, stage, and treatment type, married patients were 17 percent less likely to present with metastatic disease, 53 percent were more likely to opt for definitive treatment, and 20 percent were less likely to die of cancer than their unmarried counterparts (J Clin Oncol 2013;31:3869-3876).
"Head and neck cancer patients benefited the most-being married reduced their risk of dying from cancer by 33 percent. This risk reduction is greater than the published overall survival benefit for chemotherapy for head and neck cancer (Radiother Oncol 2011;100:33-40). Other studies corroborate these findings and have shown that married head and neck cancer patients have significantly better performance status during treatment than unmarried patients (J Clin Oncol 2006;24:4177-4183).
"One possible reason for this is that spouses of head and neck cancer patients play a critical role in caregiving and encouraging patient self-management during radiation therapy.
"At the same time, the spouses of head and neck patients report high levels of distress of their own. Addressing spouse distress is important in its own right, but at the same time, if the spouse is distressed and they are in a caregiving role, this could adversely affect the care and support that they provide to the patient.
"Thus, to maximize quality of life and health outcomes, it is imperative to address both patient and spouse self-management as well as how the couple relates to one another and coordinates care and support during this critical period."
2 What about for patients who are single? Does this intervention reveal how their care might be improved?
"Because of the research showing that marriage confers a benefit for head and neck cancer patients, I wanted to learn more about spousal relationships in this context and figure out: 1) why they were beneficial and 2) how to leverage spousal support to improve patient care and outcomes.
"Now that we have a clearer understanding of what spouses are doing that contributes to better patient outcomes, we can start thinking about how we can develop programs to teach other informal caregivers (such as family members and friends) to do the same, so that unmarried patients could potentially reap the same benefits."
3 What is the bottom-line message about this research?
"Cancer does not occur in a vacuum. Patients are affected and so are their spouses. Improving patient adherence, well-being, and outcomes requires a broader consideration and acknowledgement of the social and relational context of the patient.
"In head and neck cancers, spousal support and the caregiving that spouses provide [are] important assets. If health care can figure out ways to leverage that support, we have a real opportunity to improve both patient and caregiver outcomes and to improve the overall quality of care that we provide to our patients."