Hodgkin lymphoma (HL) survivors often report impaired quality of life due to side effects. For evaluation of the relevance of efficacy outcomes and side effects from the patient’s point of view, we created a questionnaire for HL long-term survivors. The questionnaire was sent to randomly selected patients (male and female 150 each) of every trial of our 5th trial generation (HD13, HD14, HD15) with no documented refractory disease or relapse (N=900) and to all patients with documented refractory disease or relapse (R/R) (N=249).
52% of contacted patients participated and median follow up time was 106 month. R/R was reported by 16% of the participants. Chemotherapy was a great or very great burden for 77% of the participants, independent of stage of disease, treatment and study. In early favorable (HD13) and early unfavorable stages (HD14) treatment standard included radiotherapy (RT) of 30 Gy. For 64% of participants this was a great or very great burden. In advanced stages (HD15) RT was only performed in patients with PET-positive residual tissue after chemotherapy. 26% of them rated RT as great or very great burden. Most frequent side effect was fatigue reported by 87% during and 41% after treatment. About ¾ of patients who experienced fatigue consider it as a great or very great burden. Most long-term side effects were significantly more frequent for participants with R/R. At time of first diagnosis > 50% had concerns about acute and long-term side effects, relapse and death due to HL. Most frequently the concern about relapse is mentioned. At time of survey, ≈25% without R/R worried much or very much about side effects or death because of HL and ≈40% about long-term effects or possibility of relapse. Of those participants with R/R, concern of side effects or death because of HL was present in ≈35% and about long-term effects or another relapse in ≈60 %. Cure of HL was rated as the most important treatment goal by 72% of patients. Only 9 participants (2%) would have chosen a slightly less effective therapy to avoid side effects.
Chemotherapy is a great burden independent of duration and intensity of administered regimen. HL Survivors are more concerned about relapsing than dying from HL, which could be interpreted as fear of another treatment. Results suggest that avoidance of relapse should be the primary therapy goal and cure is above possible side effects. Thus, progression-free survival is an important patient-relevant endpoint in clinical trials.
This abstract has been presented as Abstract Talk in “Survivorship”
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