Improving Self-Management in Head and Neck Cancer

Patients treated with radiation (XRT) for head and neck cancers (HNCs) experience significant
side effects such as abnormally reduced salivation, difficulty swallowing, and taste changes
even after they have been definitively treated. To control side effects and minimize
discomfort, intensive self-care protocols are prescribed, but adherence is poor. Partners
(spouses/significant others) can play a critical role in supporting adherence, but often lack
knowledge, experience high rates of distress, and display poor communication (e.g., critical
or controlling), that can interfere with patient self-care. The investigators have developed
a home-based couples skills-training (CST) intervention that teaches: 1) self-management
skills to control/prevent side-effects; 2) communication skills to facilitate coordination of
care and support; and 3) strategies to improve communal coping and confidence in the ability
to work as a team. The goal is to reduce healthcare utilization and improve multiple domains
of patient and partner QOL. Specific aims are to: develop and evaluate the content and
materials of the CST intervention (AIM 1) and evaluate its feasibility and acceptability (AIM
2). The multidisciplinary team will review and evaluate the content we have already developed
based on the ongoing work with HNC couples (K07). Once content is finalized, tailored manuals
will be developed for patients and partners and evaluated through two focus groups (AIM 1).
The investigators expect that most couples (> 60%) approached will agree to participate and
that CST will be well-accepted (AIM 2). Knowledge gained will be used to refine CST and to
collect data on effect sizes and variation for a larger trial. Innovation: CST takes a
multiple-behavioral approach to addressing and preventing HNC treatment side effects and, in
the process, seeks to improve multiple domains of QOL. It is also the first program in HNC
that actively involves both members of the couple to address barriers in the home environment
in which self-management occurs. Finally, this study conceptualizes the couple relationship
as a resource and leverages that resource to improve patient care and outcomes. Impact:
Home-based delivery will enhance future dissemination and outreach to the target population.
Overall, CST holds great promise for improving patient self-management behaviors, reducing
costly hospitalizations and treatment interruptions, and improving multiple aspects of
patient and partner QOL.

Inclusion Criteria:

- patient is initiating radiotherapy for HNC

- patient has Karnofsky score > 50 (ambulatory & capable of self-care)

- patient lives with a partner (spouse/significant other - includes homo- and
heterosexual couples)

- patient/partner is able to provide informed consent

- patient/partner is > age 18.

Exclusion Criteria:

- patient has significant comorbidities (e.g., HIV, transplant), or another illness that
may require hospitalization

- patient/partner cannot read or communicate using spoken English.

- individuals with diminished mental capacity

- prisoners

- pregnant women