Patient-reported experiences with side effects of kidney cancer therapies and corresponding information flow

Journal of Patient-Reported Outcomes

Research

Anna P. Kipp¹  Jutta Huebner²  Karin Kastrati²  Viktoria Mathies³ 

[1] Department of Nutritional Physiology, Institute of Nutritional Sciences, Friedrich Schiller University Jena, Jena, Germany;Klinik Für Innere Medizin II, University Hospital Jena, Am Klinikum 1, 07747, Jena, Germany;UniversitätsTumorCentrum Jena, University Hospital Jena, Jena, Germany;

关键词: Kidney cancer;    Nutrition related symptoms;    Patient-reported;    Renal cell carcinoma;    Side effect;   

DOI  :  10.1186/s41687-022-00533-z

 received in 2022-03-30, accepted in 2022-12-09,  发布年份 2022

来源: Springer

【 摘 要 】

BackgroundTreatment 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.Results89.1% 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.ConclusionsDifferences 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.

【 授权许可】

CC BY   
© The Author(s) 2022

【 图 表 】

Fig. 1