Quality of life, coping strategies, and supportive care needs in head and neck cancer survivors: a qualitative study.

PURPOSE: The purpose of this qualitative study was to better understand the lived experience of head and neck cancer (HNC) survivors between 6 months to 9 years post-radiation. Quality of life, coping strategies, concerns for the future, and preferences for supportive care were explored. METHODS: Semi-structured interviews were conducted in 31 HNC survivors from a Midwestern hospital. Interviews were recorded, transcribed verbatim and analyzed using qualitative thematic analysis. RESULTS: Survivors described restrictions on daily living, social eating, and financial concerns. Despite these restrictions, survivors reported an overall high mentality and enjoyment of life. Coping considerations included adapting to a new normal and increased involvement in cancer support and faith groups. Preferences for supportive care included receiving more information about and being more involved in the treatment care plan, referrals to therapy and support groups, and more comprehensive follow-up in survivorship. CONCLUSIONS: While long-term HNC survivors adapt to daily living restrictions, a high proportion continue to have unmet needs. This data can guide the development of HNC survivorship interventions to inform optimal clinical guidelines based on patients' perceived needs. This qualitative study uncovered distinct perceived needs of HNC survivors which can inform future service development. Incorporating referrals to supportive care services including speech language pathologist, physical therapists, and dietitians into the standard of care before, during, and after treatment would assist survivors in adapting to life after treatment and managing long-term health consequences of their disease.

Head and Neck Cancer Survivors' Experiences with Chronic Nutrition Impact Symptom Burden after Radiation: A Qualitative Study.

BACKGROUND: Head and neck cancer (HNC) survivors may face an array of nutrition impact symptoms (NIS), including dysphagia, xerostomia, taste alterations, and difficulty chewing, which occur as a result of tumor location and treatment with radiation. Few qualitative studies have assessed the chronic impact of NIS on everyday life. OBJECTIVE: The aim of this study was to obtain a comprehensive understanding of the lived experience of chronic NIS burden on HNC survivors. DESIGN AND PARTICIPANTS: Semi-structured, face-to-face interviews were conducted with 31 HNC survivors to address the research aims and objectives. An interview guide was utilized to consider themes that had been generated through the review of literature and through the researchers' clinical experience within the field. There were probes within the interview for participants to raise unanticipated issues and flexibility to follow such leads. Interviews were conducted between March 2018 and May 2019. ANALYSIS: A single researcher conducted the interviews to maintain consistency in data collection. Interviews lasted approximately 1 hour and were audio-recorded. All interview transcripts were professionally transcribed verbatim and checked for accuracy to ensure a complete account of participants' responses. Two researchers applied qualitative thematic content analysis to identify major themes. RESULTS: The following 4 major thematic categories emerged from the interview data: symptom presence, dietary preferences, eating adjustments, and addressing symptoms. The most common symptoms were dysphagia, xerostomia, taste alterations, and bothered chewing. As a result of dietary preferences, survivors avoided citrus fruits, dry foods, raw vegetables, sweets, and meats. Survivors preferred soft and moist foods, spices or seasonings, and sauces or gravies. Eating adjustments were described as increased time to consume meals, cutting food into smaller pieces, consuming less food, and consuming more fluid. As a result of food preference changes and eating adjustments, survivors reported dietary pattern changes from pre to post treatment. All survivors experienced 1 or more chronic NIS, yet nearly 40% were unaware before treatment that NIS had the potential to persist chronically. CONCLUSIONS: The results of this study provide unique qualitative insight into the lived experience of chronic NIS burden on HNC survivors. By recognizing the daily challenges, health care team members can better support HNC survivors in the transition from active treatment to follow-up care.