ASPO Abstracts
Development of a Specialized Head and Neck Cancer Survivorship Care Plan
Category: Survivorship & Health Outcomes/Comparative Effectiveness Research, Behavioral Science & Health Communication
Conference Year: 2018
Abstract Body:
Purpose: Oncology guidelines require the delivery of survivorship care plans (SCPs) after treatment to facilitate care transitions. Due to unique challenges faced in head and neck cancer (HNC), a specialized SCP is needed. Using qualitative methods, we characterized perspectives of HNC survivors, caregivers and multidisciplinary providers on survivorship care elements to guide development of content and format for an HNC SCP template. Methods: HNC survivors (N=20) who completed treatment <2 years ago and their caregivers (N=17) and HNC providers (N=15), completed key informant interviews. Participants described post-treatment challenges and provided feedback about a sample SCP. Content analysis was used to map themes to essential elements of survivorship care (surveillance, late/long-term effects, health promotion) and SCP visit preferences were summarized. Results: Survivors (65% male, mean age=62; 40% oral cavity cancer) and caregivers (70% partners) strongly valued surveillance to monitor symptoms and check for recurrence. The majority of survivors (90%) saw >3 specialists and relied on the coordination of multiple visits. Providers recommended additions to the SCP including: 1) key care team members (e.g., maxillofacial prosthodontist, speech pathologist), 2) clinical factors (HPV status, HNC-specific symptoms to watch) and 3) personalized follow-up care dependent on treatment and behaviors. Dyads reported wanting to discuss expectations about symptom recovery even when uncertainty exists. Primary late/long-term effects were suggested (e.g., dry mouth, speech/swallowing, neck mobility, appearance) and a shortened symptom list was proposed for those who had surgery only. Participants welcomed a focus on health promotion and caregivers especially appreciated consideration of their own well-being. Participants consistently emphasized the need for a flexible approach to the SCP to accommodate varied recovery experiences and recommended the SCP visit occur around 6 months post-treatment. A binder format for resources was preferred to share with family and other providers. Conclusions: Results confirmed the need for a specialized SCP visit for HNC survivors and their caregivers and resulted in key content and format specifications for an HNC-specific care plan.
Keywords: head and neck cancer, survivorship, qualitative