Self-reported late effects and chronic fatigue, information needs and follow-up in long-term survivors of Hodgkin lymphoma—a cross-sectional study

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Abstract
Hodgkin lymphoma survivors (HLSs) are at risk of developing late effects (LEs), and their knowledge is crucial for prevention and treatment. We explored HLSs' knowledge and experience with LEs, their needs for information about LEs, lifestyle and rehabilitation, their needs for long-term follow-up, and factors associated with these needs. HLSs, treated from 1997 to 2006, aged < 49 years at diagnosis, were invited to this Norwegian cross-sectional questionnaire-based study performed in 2018/19. Medical records provided information on histology, stage, and treatment. Descriptive statistics and logistic regression analyses were employed. In total, 304 responded (59% response rate), median age at diagnosis was 29 years (range 8-49), median age at survey was 46 (21-70), and 48% were females. Ninety percent had classical HL, 62% stage I-IIA disease, 94% received chemotherapy, and 77% radiotherapy. Thirty-two percent had experienced 1-2 LEs, and 40% ≥ 3 LEs. Information about lifestyle and/or rehabilitation was requested by 64%, and 58% wanted follow-up for LEs. In the multivariable analysis, lower education (OR 2.3, 95% CI 1.3-4.0), chronic fatigue (CF) (OR 2.3, 1.3-4.3), and physical inactivity (OR 2.1, 1.2-3.7) were associated with need for information on lifestyle and/or rehabilitation. CF (OR 2.4, 1.3-4.2) and received radiotherapy (OR 2.8, 1.5-5.3) were associated with the need for follow-up. A high proportion of HLSs report LEs, and about 60% report a need for information and follow-up. Our findings contribute to the ongoing discussion on how to best organize cancer survivorship care. CF is associated with both information needs and follow-up, indicating that these survivors could benefit from a structured follow-up programme.
Funding Information
  • Helse Sør-Øst RHF (2022017)
  • Universitetet i Oslo

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