A Surviorship Planning Tool for Head and Neck Cancer Patients and Caregivers

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DESCRIPTION (provided by applicant): The field of survivorship research is rapidly expanding but more research is needed to address the long-term clinical and psychosocial outcomes in individuals with understudied cancers. Head and neck cancer has significant effects on patient functioning and quality of life, but the experiences of patients and their caregivers after treatment remain understudied. Building on our interdisciplinary team's preliminary studies, the overall goal of the proposed research is to improve psychosocial and clinical outcomes in head and neck cancer patient-caregiver dyads by implementing a multi-level clinic intervention to prepare dyads for the post- treatment period. In preparation for a large-scale dyadic intervention trial, we will develop and pilot-test an innovative survivorship needs assessment planning (SNAP) tool. The SNAP tool will use touch-screen tablet technology to address communication barriers faced by patients and will systematically assess and address the specialized needs of head and neck cancer patients and their caregivers after treatment with the generation of a personalized care plan. The specific aims of this R21 are to 1) develop and pretest a specialized touch screen tablet computer survivorship needs assessment planning tool for head and neck cancer patients and their primary caregivers after treatment and 2) pilot-test the implementation of the SNAP tool in real time in the oncology clinic (N=30 dyads). In phase one of this research, we will conduct focus groups (n=4) with patients and caregivers and key informant interviews (n=15) with multi-disciplinary health care providers to characterize optimal domains for inclusion in the SNAP tool and examine views on implementing the SNAP tool in the clinic. An expert panel will evaluate the content validity of the SNAP tool domains and match key local support resources for the SNAP tool care plan template. In the second phase of this research, we will pilot-test the acceptability, feasibility ad short-term impact of the SNAP tool in real time. The proposed research will result in a finalized SNAP tool and care plan template for use in research and clinical practice. This research is significant because it focuses on an understudied patient population and extends a survivorship care planning model to caregivers. Results from this research will inform the development of a survivorship care intervention targeting multiple levels (individual, interpersonal and organizational factors). Ultimately, this research aims to improve the quality of survivorship care for head and neck cancer patients and their caregivers at the transition from multidisciplinary specialist care to the follow-up care period.