To address this knowledge gap, our group at the Univer-sity of Zurich is currently conducting a patient preference study regarding APC treatment in collaboration with sev-eral clinical experts across Switzerland, focusing on patients with metastatic hormone-sensitive prostate cancer [12]. Our study aims to inform decision-making in clinical practice by identifying the most patient-relevant benefits and harms of the available treatments and exploring the variation in preferences regarding these benefits and harms. In line with current guidelines [13], the project builds on several stages. In the first stage, we conducted qualitative and ex-ploratory research to draw from existing evidence and adapt the design of the study to the perception of patients and
Eliciting Patient Preferences for Advanced Prostate Cancer Treatment in Switzerland
Dominik Menges, Milo A. Puhan
Epidemiology, Biostatistics and Prevention Institute (EBPI), University of Zurich, Zurich, Switzerland
Schweizer Krebsbulletin Nr. 3/2021 213
SCHWERPUNKTTHEMA: PROSTATE CANCER
clinicians. We conducted a systematic literature review of patient preference studies in APC and interviewed patients and clinical experts involved in APC care in Switzerland.
In a next step, the information gathered during this stage will inform the further design and conduct of the preference survey. In the following paragraphs, we will share some key take-aways of the findings from the first stage of the project.
In the systematic literature review, we found that most published patient preference studies in APC were con-ducted after the approval of the treatments for which the preferences were elicited and all were funded by the pharmaceutical industry (manuscript in peer review).
Almost all studies reported that their aim was to inform decision-making in clinical practice or improve discus-sions between doctors and patients, but none explored the variability in preferences between individual patients.
However, patient preferences are most important for de-cision-making when there is a difference in preferences between patients, which could influence treatment rec-ommendations. Therefore, it is not sufficient to study the aspects of treatment that are most important to patients, but it is necessary to also consider aspects where there may be relevant variability between individuals.
Furthermore, we found that the different preference stud-ies in APC focused on a wide variety of benefit and harm outcomes and used different definitions in how they de-fined treatment benefit. While some studies used survival, an outcome generally considered of highest importance in the context of APC, most studies used varying defini-tions of progression-free survival and only one considered health-related quality of life. With regard to potential harms of treatment, studies included different outcomes that are potentially relevant to patients suffering from APC, such as fatigue, cognitive impairment, or common side effects of chemotherapy (e.g. nausea, vomiting, or di-arrhea). In addition to benefits and harms, the studies also investigated preferences related to the mode of adminis-tration, costs, or other factors. When conducting prefer-ence studies, the selection of the treatment-related aspects to be examined is highly dependent on the specific treat-ments, treatment context, as well as the aims of the study.
However, the review revealed that there was a large vari-ability in what patients considered the most important benefits and harms of different APC treatments.
The interviews conducted with patients and experts of-fered additional interesting insights and highlighted the high importance of shared decision-making and balanc-ing the benefits and harms in clinical practice. When asking patients when they perceived an adverse effect as important, we found that both the severity in terms of restriction in the daily activities, medical consequences
(e.g. hospital visits or regular doctor appointments), and threat to life, as well as the duration, potential habitua-tion and availability of alleviating treatments determined the importance of treatment harms. Additionally, not all patients were explicit with respect to what benefit they expected from treatment. While some clearly mentioned longer survival or improved health-related quality of life, others were less specific and described the expected benefit as «treatment success». Meanwhile, experts more often mentioned improved survival and health-related quality of life as the most important benefits for patients. Fur-thermore, the expert interviews broadly confirmed our findings about what factors determine the importance of harms. However, we found substantial differences be-tween how patients and experts evaluated the relative importance of selected important adverse effects of APC treatment, further highlighting the importance of further evidence on patient preferences in this context.
Conclusion
The first stage of our research project on patient prefer-ences in APC revealed several important knowledge gaps.
The mixed evidence from previous studies and differences in the perceptions of patients and experts point towards the need for further research to better understand the val-ues and preferences of patients suffering from APC. To date, experiences with patient preference studies are scarce in the Swiss health services research landscape. As such, our ongoing project represents one of few research endeav-ors into eliciting patient preferences in Switzerland [14, 15]. Given the wide variety of methods, it is important that preference studies use a systematic process based on their specific aims and explicitly addressing the decisions along the medical product life cycle that they are try-ing to inform. In the next project stage, the information gathered through our exploratory research will be used to design a preference survey ultimately aiming to improve health service delivery for men suffering from APC. We hope that the insights from this project will also encour-age other Swiss researchers to empirically study patient preferences and gather further experiences to advance pa-tient preference research in Switzerland.
Acknowledgements and disclosures: The study is funded by Swiss Cancer Research (Stiftung Krebsfor-schung Schweiz, HSR-4950-11-2019) and the Swiss Can-cer Foundation. We declare no conflicts of interest. We would like to thank all involved clinical experts for their valuable contribution to this study.
References
1. Bundesamt für Statistik (BFS). Krebs. https://www.bfs.admin.
ch/bfs/de/home/statistiken/gesundheit/gesundheitszustand/
krankheiten/krebs.html (accessed 13 May 2021).
214 Schweizer Krebsbulletin Nr. 3/2021
SCHWERPUNKTTHEMA: PROSTATE CANCER
2. Gillessen S, Attard G, Beer TM, et al. Management of Patients with Advanced Prostate Cancer: Report of the Advanced Prostate Cancer Consensus Conference (APCCC) 2019. Eur Urol 77: 508-547, 2020. doi:10.1016/j.eururo.2020.01.012.
3. Templeton AJ, Amram M-L, Berthold D, et al. Behandlung des fortgeschrittenen Prostatakarzinoms. Swiss Med Forum 20: 718–
723, 2020. doi:10.4414/smf.2020.08601.
4 . Montori VM, Brito JP, Murad MH. The Optimal Practice of Evidence-Based Medicine: Incorporating Patient Preferences in Practice Guidelines. JAMA 310: 2503–2504, 2013. doi:10.1001/
jama.2013.281422.
5. van Overbeeke E, Janssens R, Whichello C, et al. Design, Con-duct, and Use of Patient Preference Studies in the Medical Prod-uct Life Cycle: A Multi-Method Study. Front Pharmacol 10:
1395, 2019. doi:10.3389/fphar.2019.01395.
6. Whichello C, Bywall KS, Mauer J, et al. An overview of critical decision-points in the medical product lifecycle: Where to include patient preference information in the decision-making process?
Health Policy 124: 1325–1332, 2020. doi:10.1016/j.health-pol.2020.07.007.
7. Janssens R, Huys I, van Overbeeke E, et al. Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review. BMC Med Inform Decis Mak 19: 189, 2019. doi:10.1186/s12911-019-0875-z.
8. U.S. Food & Drug Administration (FDA). Patient Preference In-formation - Voluntary Submission, Review in Premarket Approv-al Applications, Humanitarian Device Exemption Applications, and De Novo Requests, and Inclusion in Decision Summaries and Device Labeling: Guidance for Industry, Food and Drug Adminis-tration Staff, and Other Stakeholders. 2016. https://www.fda.gov/
media/92593/download (accessed 18 Jul 2019).
9. European Medicines Agency (EMA). The patient’s voice in the evaluation of medicines. 2013. https://www.ema.europa.eu/en/
documents/report/report-workshop-patients-voice-evaluation-medicines_en.pdf (accessed 8 Apr 2020).
10. Aschmann HE, Boyd CM, Robbins CW, et al. Informing Patient-Centered Care Through Stakeholder Engagement and Highly Stratified Quantitative Benefit-Harm Assessments. Value Health 23: 616–624, 2020. doi:10.1016/j.jval.2019.11.007.
Correspondence:
Prof. Dr. Milo A. Puhan Epidemiology, Biostatistics and Prevention Institute (EBPI) University of Zurich Hirschengraben 84 CH-8001 Zurich miloalan.puhan@uzh.ch
11. Yebyo HG, Aschmann HE, Puhan MA. Finding the Balance Be-tween Benefits and Harms When Using Statins for Primary Pre-vention of Cardiovascular Disease: A Modeling Study. Ann Intern Med 170: 1-10, 2019. doi:10.7326/M18-1279.
12. Menges D, Braun J, Piatti MC, Puhan MA. OSF Registrations | Patient Preferences Regarding Benefits and Harms of Advanced Prostate Cancer Treatments in Switzerland. 2021. https://osf.io/
atcmy/registrations (accessed 4 Jul 2021).
13. Bridges JFP, Hauber AB, Marshall D, et al. Conjoint Analysis Ap-plications in Health—a Checklist: A Report of the ISPOR Good Research Practices for Conjoint Analysis Task Force. Value Health 14: 403–413, 2011. doi:10.1016/j.jval.2010.11.013.
14. Yebyo HG, Aschmann HE, Yu T, Puhan MA. Should statin guidelines consider patient preferences? Eliciting preferences of benefit and harm outcomes of statins for primary prevention of cardiovascular disease in the sub-Saharan African and European contexts. BMC Cardiovasc Disord 18: 97, 2018. doi:10.1186/
s12872-018-0838-9.
15. Leuthold N, Cattaneo M, Halter J, et al. Patient preferences for allogeneic haematopoietic stem cell transplantation: how much benefit is worthwhile from the patient’s perspective? Support Care Cancer 29: 3129–3135, 2021. doi:10.1007/s00520-020-05816-z
Schweizer Krebsbulletin Nr. 3/2021 215
SCHWERPUNKTTHEMA: PROSTATE CANCER
Hintergrund
Das Prostatakarzinom (PCa) ist der zweithäufigste Tumor beim Mann und führt in 15% der Fälle in der Schweiz zum Tod [1]. Mit rund 159 Fällen pro 100 000 Einwoh-ner ist die Schweiz eines der Länder mit der höchsten In-zidenzrate in Europa [2]. Durch die Diagnose PCa und dessen Therapie erleben Männer krankheitsbezogene physische und psychische Auswirkungen, wobei ihre Partner*innen sich häufig noch belasteter fühlen als die Betroffenen [3, 4]. Noch immer wird die Diagnose
«Krebs» mit dem Tod assoziiert und führt zu Schock-gefühl, Angst und Wut [5]. Nach der Diagnosestellung setzen sich Betroffene und ihre Partner*innen mit den je nach Stadium des PCa variierenden Therapieoptionen auseinander und benötigen detaillierte Informationen über deren Vor- und Nachteile [5, 6]. In der Schweiz gilt bei den 50- bis 65-jährigen Männern die operative Be-handlung des PCa als erste Wahl [7]. Entscheidet sich ein Mann für die radikale Prostatektomie, stehen oft Fragen zu therapeutischen Nebenwirkungen wie Urin-inkontinenz und erektile Dysfunktion im Vordergrund [8-10]. Die Ausprägung der Nebenwirkungen ist jedoch vom Stadium des Prostatakarzinoms, der gewählten Ope-rationstechnik sowie von der Erfahrung des Operateurs abhängig [11, 12]. Der Umgang mit Nebenwirkungen hängt vom sozialen Status ab; eine stabile Langzeitbezie-hung wirkt sich positiv aus [13].
Männer mit PCa und ihre Partner*innen benötigen ad-ressatengerechte Informationen zu Diagnose, Therapie-möglichkeiten, zu erwartende therapeutische Nebenwir-kungen sowie zum Umgang mit NebenwirNebenwir-kungen und Symptomen [14]. Zudem ist die Orientierung im Gesund-heitssystem sowie der Zugang zu Unterstützungsangebo-ten, wie psychoonkologische Beratung und Beckenboden-training, relevant [15]. Werden diese Bedürfnisse durch das Gesundheitspersonal nicht gedeckt, können sich psy-chische Auswirkungen, wie Angst und Depression ver-stärken und zu Krankheit und Arbeitsausfall führen [16].
Um diesen Bedürfnissen gezielt zu begegnen, ist vor al-lem eine interprofessionelle Zusammenarbeit der Profes-sionen Medizin, Pflege, Physiotherapie, Sozialberatung und Psychoonkologie erforderlich [17]. Je komplexer sich
die Versorgungssituation darstellt, umso enger muss auch die Zusammenarbeit der verschiedenen Professionen ge-lebt werden [18]. Leider werden aber international und in der Schweiz die Bedürfnisse der Betroffenen und Part-ner*innen nicht oder unvollständig abgedeckt [15, 19].
Informationen fehlen oft und sind nicht auf individuelle Bedürfnisse abgestimmt [14, 17].
Bedürfnisorientiertes Advanced Practice Nurse (APN) Angebot
Um die beschriebene Versorgungslücke anzugehen, wur-de 2013 erstmals in wur-der Schweiz an wur-der Universitätsklinik für Urologie des Inselspitals, Universitätsspital Bern ein APN Angebot für Patienten mit einer radikalen Prosta - tektomie wegen PCa und ihre Partner*innen aufgebaut.
Mit dem APN Angebot sollten die pflegerische Beratung verbessert, das Belastungserleben der Patienten standar-disiert erhoben sowie eine interprofessionell gut koordi-nierte, kontinuierliche und bedürfnisgerechte Betreuung ermöglicht werden. Die APN betreute Patienten und Partner*innen während dem stationären Aufenthalt ab dem Operationstag und in der gemäss medizinischer sorgungsleitlinie [8] durchgeführten Nachsorge. Die Ver-ankerung des APN Angebots im onkologischen Patien-tenpfad ist der Abbildung 1 zu entnehmen.
Die Teilnahme am Tumorboard ermöglichte der APN eine frühzeitige Auseinandersetzung mit der Erkran-kungssituation des Patienten und dem indizierten me-dizinischen Vorgehen. Im Spital begleitete sie Patienten und Partner*innen nach Bedarf. Nach dem Austritt folg-ten Beratungen telefonisch oder im Rahmen der ambu-lanten Sprechstunden alle drei Monate über das erste Jahr, danach gemäss Patientenbedarf. Zudem konnten Patien-ten oder Partner*innen die APN jederzeit kontaktieren.
Die Beratung der APN fokussierte auf die Auseinander-setzung mit dem Krankheitsbild, die Vorbereitung auf das Leben zuhause und den Umgang mit therapeutischen Nebenwirkungen, wie Inkontinenz und erektile Dysfunk-tion, im Alltag. Teil einer jeden Beratung waren das Erhe-ben der Patientenbedürfnisse und das Distress-Screening.
Letzteres unterstützte ein objektives Einschätzen des