Abstract T093

The MyHodgkin MyHealth App: patient-derived data for tracking Hodgkin Lymphoma survivorship

Background: Very long term follow up (LTFU) after HL therapy remains essential to track long-term sequelae. Ideal features of a LTFU tool include longitudinal design, reach to diverse populations, capture of patient-reported outcomes (PROs), sustainability and patient acceptability. The MyHodgkin MyHealth (MHMH) App (ANZCTRN12624001013550) was developed in partnership with HL consumers to meet these needs.

Methods: MHMH participants download the App to review study information and self-consent in-App. Access to the Pilot is limited within Australia. The .NET MAUI cross-platform App feeds separate encrypted Amazon Web Server databases keeping identifiable information separate from responses to questionnaires. Baseline survey results are presented here; longitudinal follow-up and PRO modules will go live in Q3-4 2026.

Results: MHMH launched in March 2025. As of 12 June 2026, 300 participants are enrolled, 231 have entered survey data. Of these, 77.5% baseline surveys are complete. Age at diagnosis was median 37.5y (range 14.7-83.8y). Residence was metropolitan (68.9%), regional/rural (27.8%), remote (1%). Median time from diagnosis to enrolment was 42.5 mths (range 2.1m – 53y). First line treatment was reported in 225/231: chemo alone (64.4%), chemo/radiotherapy (25.8%), chemo/immunotherapy (4.4%), chemo/immuno/radiotherapy (1.3%), radiotherapy (2.2%). First-line chemo regimen was reported in 199: 117 (58.8%), received ABVD, 40 (20.1%) escBEACOPP, other in 17, and 20 unsure. In 23/193 respondents there were 32 second cancer events: non-melanoma skin cancer (10), non-Hodgkin lymphoma (5) and lung (3), breast (3) and thyroid (2) cancers. There was an association between radiotherapy and developing a second cancer (OR 2.45, 95% CI 1.01-5.94, p=0.03). In 192 respondents, 26 self-reported a new or worsening lung condition since completing HL therapy, with a trend toward an association with radiotherapy (OR 2.24, 95%CI 0.96-5.19, p=0.07) but not bleomycin (OR 0.8, 95%CI 0.32-1.98, p=0.64). Regarding neuropathy, 120/192 (65.5%) self-reported experiencing neuropathic symptoms after treatment.

Conclusion: MHMH demonstrates proof of concept of a mobile App platform developed in close partnership with HL consumers, putting HL research into the hands of survivors. Recruitment is ongoing and future plans include integration of MHMH as a PRO and LTFU tool in clinical trials is planned and scale-up to global research populations.