Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow
Abstract Background Treatment options for metastatic renal cell carcinoma (mRCC) have improved over recent years. Various therapies for metastatic renal cell carcinoma are currently approved for first and successive lines. Having various treatment options makes it important to reflect how patients e...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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SpringerOpen
2022-12-01
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| Series: | Journal of Patient-Reported Outcomes |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s41687-022-00533-z |
| _version_ | 1798004944098295808 |
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| author | Karin Kastrati Viktoria Mathies Anna P. Kipp Jutta Huebner |
| author_facet | Karin Kastrati Viktoria Mathies Anna P. Kipp Jutta Huebner |
| author_sort | Karin Kastrati |
| collection | DOAJ |
| description | Abstract Background Treatment options for metastatic renal cell carcinoma (mRCC) have improved over recent years. Various therapies for metastatic renal cell carcinoma are currently approved for first and successive lines. Having various treatment options makes it important to reflect how patients experience side effects in the real-world setting. So far, data on the side effects of these treatments have only been collected within clinical trials, and have been mostly assessed by the investigator and not as patient-reported outcomes. Our aim was to determine patient-reported experiences of side effects in the real-world setting and to evaluate the doctor-patient communication regarding side effects. Data were collected via an anonymous, voluntary online survey given to members of a support group for RCC; the questionnaire was completed by 104 mRCC patients. Results 89.1% of participants were suffering from side effects of any grade. These appeared to be higher for patients treated with tyrosine kinase inhibitors compared to those treated with immune-checkpoint inhibitors (98.4% vs. 68.4%). However, information on side effects is scarce: 4.0% had never heard anything about them while only 18.8% of participants received detailed information on possible side effects. Although 85.6% of participants reported side effects to their physician, 34.6% did not encounter an improvement. Limitations of the study include the design as an online questionnaire and the small sample, consisting only of members of a support group. Conclusions Differences can be seen between patient-reported side effects within our survey and those based on clinical trials. A shift towards more patient-reported outcomes is needed. In addition, patients seeking the advice of their physician on side effects are in need of more—or better—information and support. |
| first_indexed | 2024-04-11T12:31:37Z |
| format | Article |
| id | doaj.art-bd750ba177b141ed9249b946ad593d96 |
| institution | Directory Open Access Journal |
| issn | 2509-8020 |
| language | English |
| last_indexed | 2024-04-11T12:31:37Z |
| publishDate | 2022-12-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj.art-bd750ba177b141ed9249b946ad593d962022-12-22T04:23:44ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202022-12-01611810.1186/s41687-022-00533-zPatient-reported experiences with side effects of kidney cancer therapies and corresponding information flowKarin Kastrati0Viktoria Mathies1Anna P. Kipp2Jutta Huebner3Klinik Für Innere Medizin II, University Hospital JenaUniversitätsTumorCentrum Jena, University Hospital JenaDepartment of Nutritional Physiology, Institute of Nutritional Sciences, Friedrich Schiller University JenaKlinik Für Innere Medizin II, University Hospital JenaAbstract Background Treatment options for metastatic renal cell carcinoma (mRCC) have improved over recent years. Various therapies for metastatic renal cell carcinoma are currently approved for first and successive lines. Having various treatment options makes it important to reflect how patients experience side effects in the real-world setting. So far, data on the side effects of these treatments have only been collected within clinical trials, and have been mostly assessed by the investigator and not as patient-reported outcomes. Our aim was to determine patient-reported experiences of side effects in the real-world setting and to evaluate the doctor-patient communication regarding side effects. Data were collected via an anonymous, voluntary online survey given to members of a support group for RCC; the questionnaire was completed by 104 mRCC patients. Results 89.1% of participants were suffering from side effects of any grade. These appeared to be higher for patients treated with tyrosine kinase inhibitors compared to those treated with immune-checkpoint inhibitors (98.4% vs. 68.4%). However, information on side effects is scarce: 4.0% had never heard anything about them while only 18.8% of participants received detailed information on possible side effects. Although 85.6% of participants reported side effects to their physician, 34.6% did not encounter an improvement. Limitations of the study include the design as an online questionnaire and the small sample, consisting only of members of a support group. Conclusions Differences can be seen between patient-reported side effects within our survey and those based on clinical trials. A shift towards more patient-reported outcomes is needed. In addition, patients seeking the advice of their physician on side effects are in need of more—or better—information and support.https://doi.org/10.1186/s41687-022-00533-zKidney cancerNutrition related symptomsPatient-reportedRenal cell carcinomaSide effect |
| spellingShingle | Karin Kastrati Viktoria Mathies Anna P. Kipp Jutta Huebner Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow Journal of Patient-Reported Outcomes Kidney cancer Nutrition related symptoms Patient-reported Renal cell carcinoma Side effect |
| title | Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow |
| title_full | Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow |
| title_fullStr | Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow |
| title_full_unstemmed | Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow |
| title_short | Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow |
| title_sort | patient reported experiences with side effects of kidney cancer therapies and corresponding information flow |
| topic | Kidney cancer Nutrition related symptoms Patient-reported Renal cell carcinoma Side effect |
| url | https://doi.org/10.1186/s41687-022-00533-z |
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