Barriers and variability in lymphedema therapy for head and neck cancer survivors: Secondary analysis from a randomized trial.

Abstract

6108 Background: Secondary lymphedema is a significant underrecognized sequela of head and neck cancer (HNC) and its treatments. Lymphedema may impact external structures (head, face, neck) and internal structures (larynx, pharynx), leading to functional impairments impacting breathing, speaking and swallowing resulting in disability, and reduced quality of life. Although therapist guided lymphedema treatment (TGLT) is effective, timely access is frequently limited by financial constraints, geographic barriers, systemic inefficiencies, and shortages of trained therapists. This study evaluates accessibility, implementation, and barriers to TGLT in HNC survivors. Methods: This prospective cohort study was nested within a multi-site randomized trial comparing usual care to an advanced pneumatic compression device (APCD). Eligible participants (N=117) were HNC survivors with lymphedema and at least one lymphedema-associated symptom rated ≥4/10. Therapy notes and patient data were abstracted to assess referral patterns, therapy timelines, lymphedema treatment characteristics, documented therapeutic goals, and reported barriers. Descriptive statistics were obtained to depict trends in therapy initiation, implementation, and barriers. Results: Of 117 participants referred for therapy, 77 (66%) were evaluated by a therapist. Of these, 11 failed to return for a second visit (56%). Median time from referral to evaluation was 17 days. Median time from evaluation to last recorded visit was 72.5 days (median 10 visits). Many patients experienced protracted wait times (Figure 1) and treatment breaks. Therapy delivery varied substantially; By last documented visit, recommendations included home manual lymphatic drainage (82%), compression garments (65%), APCD (33%), and written self-care instructions (26%). 28% achieved all therapy goals. Documentation inconsistencies and gaps in provider communication hindered effective therapy implementation. Barriers included geographic distance, financial constraints, and therapist shortages. Conclusions: Significant variability, limited care access, and delays in TGLT exist for HNC survivors. Standardized protocols, telemedicine, and adjunctive technologies such as APCDs may improve accessibility, adherence, and outcomes. Future studies should focus on optimizing care models including self-care and reducing disparities in therapy delivery. Clinical trial information: NCT04797390 . Timeframe of therapy implementation in days. Provider Referral to Therapy Evaluation Therapy Evaluation to Second Visit Provider Referral to Second Visit Therapy Evaluation to Last Visit Average 23.7 9.0 32.7 80.0 Standard deviation 21.9 6.8 23.3 44.9 Median 17.0 7.0 27.0 72.5 Minimum 0.0 1.0 1.0 7.0 Maximum 93.0 31.0 108.0 175.0 25th percentile 8.0 4.0 16.3 48.0 75th percentile 31.8 14.0 44.5 103.5