Session
26
Oral presentations Nursing, Supportive & Palliative care, Rehabilitation & Survivorship
Nov. 20, 2024,
1:45 p.m. - 3:15 p.m.,
Lima
Abstract
5
Social quality of life experience after allogeneic stem cell transplantation for Swiss Non-Hodgkin Lymphoma long-term survivors (SQoL ALLOHNS study)
M. Bana1, M. Villani1, Y. Chalandon2, S. Morin2, D. Schneidawind3, J. Passweg4, H. Baldomero4, A. Haynes5, A. von Werdt5, A. Rovó5, E. Rebmann5, 6, Presenter: M. Bana1 (1Fribourg, 2Geneva, 3Zurich, 4Basel, 5Bern, 6Neuchâtel)
Objective
Non-Hodgkin Lymphoma (NHL) standardized relative survival 5-years after diagnosis is 74.9% (95% CI 73.7-76.1%). Allogeneic stem cell transplantation (alloHSCT) is the only potentially curative treatment for relapse/refractory NHL (rrNHL), a subgroup facing health and social problems. We explored rrNHL post alloHSCT psychosocial quality of life (SQoL) as part of the ALLOHNS study (Swiss Cancer Research grant HSR-5223-11-2020).
Methods
We invited 97 rrNHL survivors at least 2 years post alloHSCT treated in a Swiss University Hospital (Zurich, Basel, or Geneva) to an online survey. Participants completed the WHOQoL-BREF questionnaire in German or French. Survey data were descriptively analysed. Hypotheses testing was not possible due to the small cohort size. In-depths interviews on subjective health and psychosocial needs were added to complement survey results.
Results
41 rrNHL, (42%) completed the survey between December 2023 and August 2024, with a median of 8 years (4-23) post alloHSCT. The median age was 64 (53-69) years and most participants were men (76%). The level of education in 22% was university, and 29% tertiary education level, 59% were married and 17% lived with a partner. Overall QoL satisfaction was mostly “very good” (46%) or “good” (39%). Most participants were very satisfied or satisfied with their work capacity (74%), social relationships (83%) and social support (90%). 39% of participants were retired and 12% self-employed. Sexuality concerns were frequently reported (67.5%). 11 patients participated in-depth interviews where they confirmed overall good SQoL but altered sexuality life, and reported furthermore fatigue affecting daily routines and work activities demanding modifications. Important support resources were the HSCT care team and a sustainable social network. Main issues reported were financial and insurance matters, reduced work capacity, dismissals, unemployment and the lack of support to solve them. Supportive peer meetings to facilitate after alloHSCT reintegration arised as a relevant unmet need.
Conclusion
Well-educated Swiss post alloHSCT rrNHL survivors report overall good SQoL and seem to be satisfied with their general situation, work capacity, and social network. In-depth interviews revealed support needs related to finances and professional integration post alloHSCT. The results should be interpreted with caution due to the small cohort size.