Survivors’ knowledge of their diagnosis, treatment and possible late adverse effects after autologous stem cell transplantation for lymphoma

Abstract

Purpose: Lymphoma survivors after high dose therapy with autologous stem cell therapy (HD-ASCT) are at high risk for late adverse effects (AEs). Information patients receive and collect throughout their cancer trajectory about diagnosis, treatment schedule and risks of AEs may influence attitudes and health-related behavior in the years after treatment. The purpose of this study was to explore level of knowledge in lymphoma survivors after HD-ASCT at a median of 12 years after primary diagnosis. Material and methods: From a national study on the effects of HD-ASCT for lymphomas, 269 survivors met for an outpatient examination, including a structured interview addressing knowledge about diagnosis and treatment. Survivors were also asked whether they knew and/or had experienced certain common late AEs. Numbers of recognized and experienced late AEs were presented as sum scores. Factors associated with the level of knowledge of late AEs were analyzed by linear regression analysis. Results: Eighty-one percent of the survivors knew their diagnosis, 99% knew the components of HD-ASCT and 97% correctly recalled having had radiotherapy. Ninety percent reported awareness of late AEs, but the level of knowledge and personal experience with specified AEs varied. Thirty-five percent of survivors stated to have received follow-up for late AEs. In multivariable analysis younger age at diagnosis, having received mediastinal radiotherapy, higher mental health related quality of life, a higher number of self-experienced late AEs and having received follow-up care for late AEs were significantly associated with a higher level of knowledge of AEs. Conclusion: The majority of lymphoma survivors treated with HD-ASCT correctly recalled diagnosis and treatment, while knowledge of late AEs varied. Our findings point to information deficits in survivors at older age and with lower mental health related quality of life. They indicate benefit of followup to enhance education on late AEs in lymphoma survivors.

Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study)

“…The relatively low number of survivors attending follow-up care corresponds to reports on childhood cancer survivors from other countries [24- 26,35]. This is also in line with previous studies from our research group among other groups of cancer survivors mostly diagnosed at young ages [36,37].…”

Physical activity and associations with treatment-induced adverse effects among prostate cancer patients

“…In general, studies report high agreement between self-reported treatment and medical records in terms of treatments such as surgery, RT and chemotherapy (246)(247)(248). Further, Norwegian studies on long-term lymphoma survivors have demonstrated that > 90% correctly recalled their treatment (249,250). However, less accurate data is found for more detailed treatment information such as type of self-reported hormone therapy and chemotherapy among PC patients (246) and young female cancer survivors and BC survivors (247,248).…”

Information needs during cancer care: Qualitative research with locally advanced cervical cancer patients in Brazil, China, Germany, & the US

“…Patients who had already undergone and/or completed their treatment were included in the study. To ensure reliable recall of treatment modalities, a two-year window was chosen, which is supported by existing literature ( Gast, et al, 2019 ; Simensen, 2019 ). Patients who had already made their treatment decision were selected to avoid potentially influencing their treatment decisions.…”