PMID- 31286808 OWN - NLM STAT- MEDLINE DCOM- 20191227 LR - 20191227 IS - 1651-226X (Electronic) IS - 0284-186X (Linking) VI - 58 IP - 9 DP - 2019 Sep TI - Survivors' knowledge of their diagnosis, treatment and possible late adverse effects after autologous stem cell transplantation for lymphoma. PG - 1315-1322 LID - 10.1080/0284186X.2019.1637538 [doi] AB - 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 follow-up to enhance education on late AEs in lymphoma survivors. FAU - Simensen, Victoria C AU - Simensen VC AD - National Advisory Unit for Late Effects after Cancer Treatment, Oslo University Hospital , Oslo, Norway. AD - Department of Oncology, Oslo University Hospital , Oslo, Norway. FAU - Smeland, Knut B AU - Smeland KB AD - National Advisory Unit for Late Effects after Cancer Treatment, Oslo University Hospital , Oslo, Norway. AD - Department of Oncology, Oslo University Hospital , Oslo, Norway. FAU - Kiserud, Cecilie E AU - Kiserud CE AD - National Advisory Unit for Late Effects after Cancer Treatment, Oslo University Hospital , Oslo, Norway. AD - Department of Oncology, Oslo University Hospital , Oslo, Norway. FAU - Dahl, Alv A AU - Dahl AA AD - National Advisory Unit for Late Effects after Cancer Treatment, Oslo University Hospital , Oslo, Norway. AD - Faculty of Medicine, University of Oslo , Oslo , Norway. FAU - Bersvendsen, Hanne S AU - Bersvendsen HS AD - Department of Oncology, University Hospital of North Norway , Tromso , Norway. FAU - Fluge, Oystein AU - Fluge O AD - Department of Oncology, Haukeland University Hospital , Bergen , Norway. FAU - Fagerli, Unn-Merete AU - Fagerli UM AD - Department of Oncology, St. Olav's University Hospital , Trondheim , Norway. AD - Institute Clinical and Molecular Medicine (IKOM), The Norwegian University of Science and Technology (NTNU) , Trondheim , Norway. FAU - Fossa, Alexander AU - Fossa A AD - National Advisory Unit for Late Effects after Cancer Treatment, Oslo University Hospital , Oslo, Norway. AD - Department of Oncology, Oslo University Hospital , Oslo, Norway. LA - eng PT - Journal Article DEP - 20190709 PL - Sweden TA - Acta Oncol JT - Acta oncologica (Stockholm, Sweden) JID - 8709065 SB - IM MH - Adolescent MH - Adult MH - Age Factors MH - Aged MH - Cancer Survivors/*psychology/statistics & numerical data MH - Child MH - Female MH - Health Behavior MH - *Health Knowledge, Attitudes, Practice MH - Hematopoietic Stem Cell Transplantation/*adverse effects/methods MH - Humans MH - Lymphoma/diagnosis/*psychology/radiotherapy/surgery MH - Male MH - Mental Recall MH - Middle Aged MH - Norway MH - Patient Education as Topic MH - Quality of Life MH - Regression Analysis MH - Surveys and Questionnaires MH - Time Factors MH - Transplantation Conditioning/methods/statistics & numerical data MH - Transplantation, Autologous/adverse effects MH - Young Adult EDAT- 2019/07/10 06:00 MHDA- 2019/12/28 06:00 CRDT- 2019/07/10 06:00 PHST- 2019/07/10 06:00 [pubmed] PHST- 2019/12/28 06:00 [medline] PHST- 2019/07/10 06:00 [entrez] AID - 10.1080/0284186X.2019.1637538 [doi] PST - ppublish SO - Acta Oncol. 2019 Sep;58(9):1315-1322. doi: 10.1080/0284186X.2019.1637538. Epub 2019 Jul 9.