Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors
Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2022-03-01
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| Series: | Cancers |
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| Online Access: | https://www.mdpi.com/2072-6694/14/6/1534 |
| _version_ | 1797446938779451392 |
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| author | Micol E. Gianinazzi Cecilie E. Kiserud Ellen Ruud Hanne C. Lie |
| author_facet | Micol E. Gianinazzi Cecilie E. Kiserud Ellen Ruud Hanne C. Lie |
| author_sort | Micol E. Gianinazzi |
| collection | DOAJ |
| description | Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. Material and methods: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. Results: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. Conclusions: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions. |
| first_indexed | 2024-03-09T13:47:43Z |
| format | Article |
| id | doaj.art-fe3f81ca18e24418a9a56a610aac3c78 |
| institution | Directory Open Access Journal |
| issn | 2072-6694 |
| language | English |
| last_indexed | 2024-03-09T13:47:43Z |
| publishDate | 2022-03-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Cancers |
| spelling | doaj.art-fe3f81ca18e24418a9a56a610aac3c782023-11-30T20:56:45ZengMDPI AGCancers2072-66942022-03-01146153410.3390/cancers14061534Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer SurvivorsMicol E. Gianinazzi0Cecilie E. Kiserud1Ellen Ruud2Hanne C. Lie3National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, 0379 Oslo, NorwayNational Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, 0379 Oslo, NorwayDepartment of Pediatric Medicine, Oslo University Hospital, Rikshospitalet, 0372 Oslo, NorwayDepartment of Behavioral Medicine, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, 0372 Oslo, NorwayBackground: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. Material and methods: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. Results: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. Conclusions: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions.https://www.mdpi.com/2072-6694/14/6/1534CCSYACSinformation provisionlate effectsfollow-up carecancer survivorship |
| spellingShingle | Micol E. Gianinazzi Cecilie E. Kiserud Ellen Ruud Hanne C. Lie Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors Cancers CCS YACS information provision late effects follow-up care cancer survivorship |
| title | Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors |
| title_full | Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors |
| title_fullStr | Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors |
| title_full_unstemmed | Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors |
| title_short | Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors |
| title_sort | who knows information received and knowledge about cancer treatment and late effects in a national cohort of long term childhood adolescent and young adult cancer survivors |
| topic | CCS YACS information provision late effects follow-up care cancer survivorship |
| url | https://www.mdpi.com/2072-6694/14/6/1534 |
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