Self-care for head and neck cancer survivors with lymphedema and fibrosis

PRIMARY OBJECTIVES: I. To complete development of a self‐care program focusing on lymphedema and fibrosis (LEF) in head and neck cancer (HNC) survivors (LEF‐self‐care program [SCP]) with the goal of improving LEF associated outcomes when compared to usual care alone. (Stage I) II. To determine the feasibility of a program of LEF‐SCP with or without follow‐up to usual care for HNC survivors with LEF, specifically to: 1) obtain recruitment estimates and determine barriers to recruitment; 2) identify barriers to implementation; 3) assess safety; and 4) evaluate patient satisfaction. (Stage II) III. To determine if the LEF‐SCP with or without follow‐up enhances self‐efficacy and adherence compared to usual care in HNC survivors with LEF. (Stage II) IV. To determine the preliminary efficacy of the LEF‐SCP with or without follow‐up as compared to usual care for the following outcomes: 1) LEF progression; 2) symptom burden; and 3) functional status. (Stage II) OUTLINE: Project Stage I: Patients undergo a training session with the study lymphedema therapist and review the educational manual and videos for the development of all three components of the LEF self‐care program. Project Stage II: Patients are randomized to 1 of 3 groups. GROUP I: Patients will receive usual care only, without any additional interventions. GROUP II: Patients undergo LEF‐SCP training comprising of motivational interview (MI) session over 1 hour and LEF self‐care training session over 1 hour weekly for 3 weeks. Patients also review LEF self‐care educational manual and watch self‐care videos monthly or more frequently as needed. GROUP III: Patients undergo LEF‐SCP training comprising of MI session over 1 hour and LEF self‐care training session over 1 hour weekly for 3 weeks. Patients review LEF self‐care educational manual and watch self‐care videos monthly or more frequently as needed. Patients also meet with the study lymphedema therapist over 1 hour at 3, 6, and 9 months. After completion of study, patients are followed up at 3, 6, 9, and 12 months.