A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance?
As long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follo...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-03-01
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| Series: | Frontiers in Psychology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyg.2022.846671/full |
| _version_ | 1819121047413194752 |
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| author | Mareike Ernst Elmar Brähler Jörg Faber Philipp S. Wild Philipp S. Wild Philipp S. Wild Hiltrud Merzenich Manfred E. Beutel |
| author_facet | Mareike Ernst Elmar Brähler Jörg Faber Philipp S. Wild Philipp S. Wild Philipp S. Wild Hiltrud Merzenich Manfred E. Beutel |
| author_sort | Mareike Ernst |
| collection | DOAJ |
| description | As long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS (N = 633) (age M = 34.92; SD = 5.70 years) drawn from the German Childhood Cancer Registry’s oldest cohort (> 25 years after diagnosis). Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample (n = 43). Half of the participants (n = 314, 49.6%) reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose (n = 178), termination by the health care provider (n = 53), structural barriers (n = 21), and emotional-motivational aspects (n = 17). The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions. |
| first_indexed | 2024-12-22T06:30:21Z |
| format | Article |
| id | doaj.art-0ee65b6abe164b7f8fe7c23388fe4f13 |
| institution | Directory Open Access Journal |
| issn | 1664-1078 |
| language | English |
| last_indexed | 2024-12-22T06:30:21Z |
| publishDate | 2022-03-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Psychology |
| spelling | doaj.art-0ee65b6abe164b7f8fe7c23388fe4f132022-12-21T18:35:43ZengFrontiers Media S.A.Frontiers in Psychology1664-10782022-03-011310.3389/fpsyg.2022.846671846671A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance?Mareike Ernst0Elmar Brähler1Jörg Faber2Philipp S. Wild3Philipp S. Wild4Philipp S. Wild5Hiltrud Merzenich6Manfred E. Beutel7Department of Psychosomatic Medicine and Psychotherapy, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyDepartment of Psychosomatic Medicine and Psychotherapy, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyDepartment of Pediatric Hematology, Oncology, and Hemostaseology, Center for Pediatric and Adolescent Medicine, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyPreventive Cardiology and Preventive Medicine-Department of Cardiology, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyCenter for Thrombosis and Hemostasis, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyGerman Center for Cardiovascular Research (DZHK), Mainz, GermanyInstitute for Medical Biostatistics, Epidemiology and Informatics, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyDepartment of Psychosomatic Medicine and Psychotherapy, University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, GermanyAs long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS (N = 633) (age M = 34.92; SD = 5.70 years) drawn from the German Childhood Cancer Registry’s oldest cohort (> 25 years after diagnosis). Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample (n = 43). Half of the participants (n = 314, 49.6%) reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose (n = 178), termination by the health care provider (n = 53), structural barriers (n = 21), and emotional-motivational aspects (n = 17). The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions.https://www.frontiersin.org/articles/10.3389/fpsyg.2022.846671/fullcancer survivorshipchildhood cancerfollow-uphealth carequalitativemixed methods |
| spellingShingle | Mareike Ernst Elmar Brähler Jörg Faber Philipp S. Wild Philipp S. Wild Philipp S. Wild Hiltrud Merzenich Manfred E. Beutel A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? Frontiers in Psychology cancer survivorship childhood cancer follow-up health care qualitative mixed methods |
| title | A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? |
| title_full | A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? |
| title_fullStr | A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? |
| title_full_unstemmed | A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? |
| title_short | A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? |
| title_sort | mixed methods investigation of medical follow up in long term childhood cancer survivors what are the reasons for non attendance |
| topic | cancer survivorship childhood cancer follow-up health care qualitative mixed methods |
| url | https://www.frontiersin.org/articles/10.3389/fpsyg.2022.846671/full |
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