Enhancing Self Care Among Oral Cancer Survivors: The Empowered Survivor Trial - Abstract
The diagnosis and treatment of oral and oropharyngeal cancers adversely affects the ability to swallow, taste,
speak, chew, and maintain movement of the head, neck, and shoulder. To preserve function and reduce late
effects, survivors coordinate their long-term medical and psychosocial needs, manage a significant number of
daily care routines, and address comorbidities. Despite the significant long-term survivorship care
requirements, there are no empirically-based interventions to assist survivors in building skills and confidence
to effectively manage their care. We have evaluated the information and support needs of survivors recruited
via the New Jersey State Cancer Registry and, using this feedback, designed, and tested the feasibility and
preliminary efficacy of Empowered Survivor (ES), an innovative and interactive online intervention. Our results
indicated that Empowered Survivor was well-utilized and resulted in significant improvements in self-efficacy in
managing care, greater preparedness for managing survivorship, and head and neck specific quality of life
(QOL). Engagement in three self-care behaviors (oral self-exam, swallowing and head and neck mobility
exercises) increased. The goal of the proposed study is to bolster the ES intervention by enhancing modules
and adding two modules based on participant input: Calm and Connect, which focuses on managing
psychological concerns, and Maintaining, which focuses on maintaining self-care routines. We will evaluate ES
against a free online self-management intervention, Springboard Beyond Cancer (Springboard), which was
developed for cancer survivors by the National Cancer Institute and the American Cancer Society. Six hundred
patients who have completed treatment between one and three years ago and are currently cancer-free will be
recruited via the New Jersey State Cancer Registry or the Cancer Registry of Greater California and randomly
assigned to ES or Springboard. Participants will complete measures at baseline, 2, and 6-months post-
baseline. Finally, we will engage in a process evaluation of Empowered Survivor to inform future
implementation. This single site clinical trial study has four aims. Aim 1 evaluates the impact of ES versus
Springboard on the primary outcomes of self-efficacy, preparedness, and head and neck specific QOL. Aim 2
examines mediators (planning, information needs, support needs, activation, fear of recurrence) and
moderators (age, race/ethnicity, sex, HPV status, baseline self-efficacy and preparedness) of ES's impact on
self-efficacy in managing care, preparedness, and head and neck specific QOL. Aim 3 evaluate the impact of
ES versus Springboard Beyond Cancer on the secondary outcomes of engagement in oral self-exams and
head and neck mobility exercises. The Exploratory Aim conducts a process evaluation of ES to inform future
implementation. Although cancer survivors have many long-term self-care needs, there are few empirically-
based self-management interventions for cancer survivors. Should Empowered Survivor prove efficacious, it
will serve as a model of care and advance both science and practice for survivors of all types of cancer,
particularly survivors who receive their care in the community.
