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

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.

Cancer Patient Motives and Expectations on Non-medical Practitioners.

BACKGROUND/AIM: Non-medical practitioners (NMPs) are an ill-defined group of professionals offering patient diagnostic and therapeutic methods mostly in the field of complementary and alternative medicine (CAM). Despite a lack of quality-assessed structured professional formation, many patients with cancer visit NMPs for advice. This study aimed to learn more on patients' motives and expectations for consulting an NMP. PATIENTS AND METHODS: A standardized questionnaire was distributed to adult cancer patients addressing attitudes towards NMPs, motives and expectations for consulting an NMP. RESULTS: A total of 279 patients took part in the survey. Of the included patients 44.8% had already visited an NMP and 16.5% planned to do so. Reasons to visit an NMP were seeking for a supplementary treatment (72.0%) or control of side-effects (68.0%). While the oncologist ranked higher than the NMP in all aspects of physician-patient interaction and patients more often trusted in the oncologist, those patients rating their oncologist rather low in any of these questions significantly more often consulted an NMP. The methods applied or recommended by the NMPs were highly heterogenous ranging from biologically-based methods to mind-body-techniques. Most often used methods were homeopathy (72.0%) vitamin D (62.7%), selenium (42.7%), acupuncture (38.7%). CONCLUSION: There is a high proportion of cancer patients visiting NMPs mostly for additional treatment. Biologically-based treatments may induce side-effects and interactions, especially as NMPs are not trained on medically accepted cancer treatment and medications. Offering information on CAM and improving the physician-patient relationship are important means to answer unmet needs from the side of the patient.

Systemic therapy in metastatic renal cell carcinoma (mRCC): an evidence-based recommendation of the German interdisciplinary RCC guidelines group.

PURPOSE: The treatment landscape in metastatic renal cell carcinoma (mRCC) has evolved dramatically in recent years. Within the German guideline committee for RCC we evaluated current medical treatments and gave recommendations. METHODS: A systematic review of published evidence for medical treatment of mRCC was performed (July 2016-August 2019) to cover the duration from last guideline update in 2016. Evidence was graded according to SIGN ( http://www.sign.ac.uk/pdf/sign50.pdf ). Recommendations were made on the basis of a nominal group work with consensus approach and included patient advocates and shareholder of the German RCC treatment landscape. Each recommendation was graded according to its strength as strong recommendation (A) or recommendation (B). Expert statements were given, where appropriate. RESULTS: Strong first-line recommendations (IA) exist for axitinib + pembrolizumab (all risk categories) and ipilimumab + nivolumab (intermediate or poor risk only). Axitinib + avelumab is a recommended first-line treatment across patients with any risk category (IB). In patients who are not candidates for immune check point inhibitor (ICI) combinations, targeted agents should be offered as an alternative treatment. Subsequent treatment after ICI-based combinations remain ill-defined and no standard of care can be formulated. CONCLUSION: ICI-based combinations are the first-line standard of care and should be considered accordingly. There is an unmet medical need for pivotal studies that define novel standards in patients with failure of ICI-based combinations.

Importance of and Satisfaction with Information about Their Disease in Cancer Patients.

To learn more about information needs and satisfaction with provided information among cancer patients and whether dissatisfaction with information has any association with how therapy decisions are made. An online survey was conducted during March 2015 and January 2016 by the German non-profit patient organization "Das Lebenshaus e.V." among their members with rare solid tumors. A total of 338 records was analyzed. The majority found information on their disease important and was satisfied with the provided information. The participants were less satisfied with the information concerning management of side effects than with other aspects of information (p < .001). Support groups, lectures, and the oncologist were rated as the most helpful sources of information followed by a second opinion and media. Participants who were dissatisfied with the information more often made the decision on the treatment alone by themselves (p < .001). Our results show a high satisfaction with disease-related information among our study participants. Improvements could be made by offering more information on the management of side effects and by giving more information about support groups, reliable websites, and other helpful media.

Not all cancer patients with an interest in CAM are the same. Differences between patients with a CAM interest prior to the cancer diagnosis and those with first-time interest since diagnosis.

OBJECTIVES: The aim was to assess differences in age, gender, education and personality (Big Five) between cancer patients already interested in CAM prior to the diagnosis and cancer patients only interested in CAM since their diagnosis. DESIGN: 323 members of the support and information platform "Lebenshaus e.V." with gastrointestinal stromal tumours (GIST), renal cell carcinomas (RCC) and sarcomas participated in an online survey. MAIN OUTCOME MEASURES: Interest in CAM prior to cancer diagnosis, CAM interest since diagnosis, CAM use and disclosure of CAM use to doctors. RESULTS: 39% were already interested in CAM before the diagnosis and 40.6% were first interested in CAM after their diagnosis. 44.9% stated a current/past CAM use. Female gender and high education were significant predictors for interest in CAM before the diagnosis and general CAM use. The Big Five did not become significant predictors. Predictors were different for patients interested in CAM before the diagnosis and patients only interested since the diagnosis. Sarcoma patients were significantly more likely to be interested in CAM after the diagnosis than patients with GIST. Disclosure of CAM use could not be predicted by sociodemographic variables and personality. CONCLUSION: Known predictors for interest in CAM such as female gender, higher education and younger age do not seem to apply in cancer patients with no prior CAM affinity. This result together with a high CAM prevalence raises the importance of addressing CAM in all cancer patients for a need-oriented treatment and to avoid side effects and interactions with conventional treatment.

Information needs and usage of complementary and alternative medicine in members of a German self-help group for gastrointestinal stroma tumours, sarcoma, and renal cancer.

OBJECTIVE: 40-50% of German cancer patients use some method of complementary and alternative medicine (CAM) and both patients and doctors often feel insufficiently informed. We examined the information-seeking behaviour and satisfaction with information on patients' interest in CAM and the therapy decision. DESIGN AND SETTING: An anonymous, voluntary online survey was conducted among the members of "Das Lebenshaus e.V." (House of Life), a decentralized support group for patients with gastrointestinal stroma tumours (GIST), sarcoma, and renal cancer. Data was collected from March 2015 until January 2016 using closed questions with multiple choice if appropriate and in case of ranking, a 5-point Likert scale. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Correlations between CAM interest, usage, information needs, sources of information and therapy decision were calculated using chi square tests for univariate analyses. RESULTS: Overall, 431 patients took part in our survey, thus return rate was 19.6%. 43.9% (n = 189) of the participants were female, 37.1% (n = 160) were male, 19.0% (n = 82) did not respond. Mean age was 59.8 years. The most common tumours were GIST (346%, n = 149), renal cancer (22.3%, n = 96) and sarcoma (20.0%, n = 86). 55.2% (n = 138) of the respondents were patients undergoing treatment, 19.7% (n = 85) were after treatment, 2.6% (n = 11) were relatives and 4.4% (n = 19) others while 18.1% (n = 78) did not respond. A total of 81.8% (n = 337) of the participants were interested in CAM, but only 44.7% (n = 152) used one of the methods. Women were more commonly interested in CAM (87.2%, n = 163) and used it more often: 53.0% (n = 97) vs. 36.2% (n = 55). Information about CAM was considered important by 85.5% (n = 360) and the Internet was the most commonly used source for information about CAM (77.9%, n = 205). However, 61.4% (n = 233) were not satisfied with the information received about CAM, especially from doctors and hospitals. Patients unsatisfied with the information they had formally received about the course of their disease significantly more often used CAM (p = 0.029). Users would also make the therapy decision by themselves more often (p = 0.036). Nearly a fifth did not disclose their use to a doctor. CONCLUSIONS: Dissatisfaction with received information reveals a strong need for scientific information to be available to both patients and doctors. Physicians should get special training about CAM. As the Internet is an important source, high-quality and scientific information should be portrayed on webpages easily accessible to patients.