Abstract
Introduction:
It is important to actively involve patients with cT1 renal masses in treatment decision-making. Patient decision aids (PtDAs) support patients and health care professionals (HCPs) in shared decision-making. The aim of this study was to develop a Dutch PtDA for cT1 renal masses and to test its acceptability and usability.
Methods:
This was a user-centered mixed-methods design. Cocreation process with HCPs from several hospitals and a patient representative, with input from (a) a needs assessment study (semistructured interviews and questionnaires) and (b) acceptability and usability testing (think-aloud sessions and semistructured interviews), guided by the International Patient Decision Aids Standards (IPDAS) criteria. Compatibility with the IPDAS criteria was evaluated (c).
Results:
In total, 12 patients with cT1 renal masses and 56 HCPs participated. The PtDA consists of 3 components: (1) a decision aid handout demonstrating an overview of treatment options; (2) an online decision aid with information on renal cell carcinoma, treatment options, and values-clarification exercises; and (3) a personal decision aid summary. Both patients and HCPs highly appreciated the PtDA and were able to navigate through it. The PtDA fulfills all 12 IPDAS criteria.
Conclusions:
We systematically developed a PtDA for cT1 renal masses. The PtDA was found acceptable and usable by patients and HCPs. The PtDA is currently being implemented in routine care.
Key Words: decision aid, renal cell carcinoma, shared decision-making
Renal cell carcinoma (RCC) represents 3% to 5% of cancer diagnoses in Europe yearly.1 In the Netherlands, the incidence is expected to increase by 31% in a decade.2 More than half of Dutch RCC diagnoses are cT1 tumors.3 Approximately 80% of surgically excised tumors < 4 cm are malignant.4 As several treatment options for cT1 tumors exist, patients and health care professionals (HCPs) have the opportunity and responsibility to determine the best treatment option. There is no clear definition of evidence-based selection criteria. Accordingly, not only tumor characteristics, treatment outcomes and risks, and patient comorbidities but also patient’s individual preferences and values must be taken into account. This process can be facilitated by shared decision-making (SDM).
UPJ Insight
Study Need and Importance
The incidence of renal cell carcinoma (RCC) is increasing worldwide. More than half of RCC diagnoses in the Netherlands are cT1 tumors. Patients with cT1 renal masses have several treatment options. It is important to actively involve patients in the treatment decision process to ensure informed decisions that align with patient's values and preferences, after the process of shared decision-making. Patient decision aids (PtDAs) can support shared decision-making. This study aimed to develop a Dutch PtDA for patients with cT1 renal masses.
What We Found
Using a user-centered mixed-methods design, we developed a 3-component PtDA involving all relevant stakeholders. A total of 12 patients and 56 health care professionals (HCPs) participated. Five cocreation sessions were held with a working group consisting of HCPs from several hospitals and a patient representative. A needs assessment study and acceptability and usability testing were used as an input for these sessions. Patients reported a need for clear information about all available treatment options. They reported on several tradeoffs involved in the decision-making process. HCPs were willing to make an effort to involve patients, and a PtDA was considered desirable. The development process and final PtDA (Figure) were compatible with the International Patient Decision Aids Standards criteria.
Limitations
Owing to the semiqualitative design, the number of patients included in this study was small. Most patients were highly educated, and there was limited inclusion of patients from diverse ethnic and racial backgrounds. Digital and language skills were not assessed.
Interpretation for Patient Care
- This study provides valuable insights into the development of a PtDA for the management of localized RCC. The existence and use of this PtDA could contribute to high-quality, patient-centered, and appropriate care for patients with RCC in the Netherlands.
Figure.
The 3-component cT1 renal masses patient decision aid and patient instructions for its use. Used with permission from ZorgKeuzeLab.
SDM is a collaborative approach in which patients are actively involved in decision-making to ensure informed decisions that align with their values and preferences.5,6 SDM is known to lead to improved quality of life, reduced decisional conflict, improved patient satisfaction, and reduced health care utilization.7-9 SDM is crucial when multiple treatment options exist, as is the case with RCC. The European Association of Urology RCC guidelines advocate SDM for treatment decisions.10 However, a global survey shows nearly one-third of patients with RCC report no involvement in treatment decision-making, suggesting poor SDM implementation.11
SDM can be supported by patient decision aids (PtDAs), which provide information about options and associated risks, helping patients clarify personal values to choose the most appropriate treatment.12 PtDA use is known to result in patients taking an active role in decision-making, increased patient knowledge, and patients feeling informed and clear about their personal values.9
In uro-oncology, the importance of SDM has been increasingly recognized, with some PtDAs available.13 However, most focus on prostate cancer and few tools for RCC exist.14-16 Given the complexity and impact of treatment decisions in RCC, it is important to integrate SDM in this setting. In addition, previous studies show variation in cT1 RCC treatment across geographical regions,17,18 highlighting the need for consistent patient guidance. SDM is essential to ensure that patients are informed about all appropriate options, regardless of local availability. Current tools lack a personalized overview of individual values and preferences, which could significantly improve decision-making. Effective implementation of a PtDA requires tailoring to tumor (sub)type, therapeutic options, and language. Therefore, a country-specific PtDA is needed. With rising RCC incidence worldwide19 and new treatment options, there is a need for better SDM implementation in RCC care. This study aimed to develop a Dutch PtDA for cT1 renal masses.
Materials and Methods
User-centered mixed-methods development process based on the International Patient Decision Aids Standards (IPDAS)20 criteria, consisting of cocreation sessions and 3 main elements: a needs assessment study (a), acceptability and usability testing (b), and compatibility evaluation with the IPDAS minimum criteria (c; Figure 1).
Figure 1.
Development process of the cT1 renal masses patient decision aid (PtDA). HCP indicates health care professional; IPDAS, International Patient Decision Aids Standards; a, needs assessment study; b, acceptability and usability testing; c, compatibility evaluation with IPDAS criteria.
Participants
HCPs specialized in RCC and patients with cT1 renal masses aged ≥ 18 years who were able to complete a telephone interview were included. Patients who were not fluent in Dutch or unable to answer interview questions independently were excluded. For the needs assessment study (a), patients were recruited by means of purposive sampling through working group members. Needs assessment study (a) participants who had consented to participate in follow-up research were included for acceptability and usability testing (b).
All patients signed informed consent. The Medical Research Ethics Committee United (MEC-U) in Nieuwegein has confirmed that the Medical Research Involving Human Subjects Act (WMO) did not apply to this study (Ref: AW23.027/W22.125). The study followed local laws and regulations, with local feasibility approved at each hospital. Data were collected from July 2022 to June 2023.
HCPs were recruited using purposive expert and snowball sampling. For the needs assessment study (a), HCPs were invited through an email distributed by the Dutch Renal Cancer Group/Dutch Urological Association. For acceptability and usability testing (b), HCPs involved in RCC care, but not part of the working group, were selected through purposive sampling facilitated by working group members.
Cocreation Sessions
Cocreation sessions were conducted with a multidisciplinary team of HCPs and a representative from the Dutch Kidney Cancer Patient Association (ie, “working group”). In collaboration with ZorgKeuzeLab, a company experienced in the development and implementation of PtDAs, the scope, target audience, objectives, format, and implementation strategy for the PtDA were defined.
Twelve HCPs from 10 Dutch hospitals were invited to participate in the working group. Five cocreation sessions were planned. To ensure that the PtDA met the needs and preferences of both patients and HCPs, the results of the needs assessment study (a) were shared during the cocreation sessions and integrated in the development process. Draft versions of the PtDA were produced, reviewed, and evaluated during acceptability and usability testing (b). Feedback was used to refine and finalize the PtDA. Cocreation sessions took place both in person and online. Sessions were audio recorded for validation purposes and field notes were taken.
Needs Assessment Study
For patients, semistructured interviews were conducted using a predefined topic guide (Supplementary Appendix I, https://www.urologypracticejournal.com). All interviews were audio recorded, transcribed, and analyzed independently by 2 researchers (C.B. and M.T.) using an inductive thematic approach. Interviews continued until thematic saturation was reached.
For HCPs, data were collected using a 40-item online survey, collecting information on experience in RCC care, perspectives on SDM, and perceptions and requirements for the PtDA (Supplementary Appendix II, https://www.urologypracticejournal.com).
Acceptability and Usability Testing
Patients participated in online think-aloud sessions through Microsoft Teams. During these 1-hour sessions, patients navigated through the online PtDA while articulating their thoughts aloud. Sessions were recorded and field notes were taken to document challenges and assess usability. Patients provided feedback on the content, design, and usefulness of the tool, and whether they would recommend it to others.
HCPs from different hospitals were interviewed by telephone to gain insight into the implementation of the PtDA in different workflows. During the interviews, HCPs shared their willingness to use the PtDA, their likelihood to recommend it (acceptability), and their suggestions for improving the workflow and content (usability). Interviews were audio recorded and field notes were taken for verification purposes.
Suggestions for improvement were categorized and discussed with the working group in the fifth cocreation session. Feedback was reviewed, and consensus was reached on the final changes to be implemented in the PtDA.
Compatibility Evaluation With IPDAS Criteria
The compatibility of the PtDA with the IPDAS criteria was evaluated based on the 12 minimum qualifying and certification criteria for decision aids.21
Analysis
Patient and HCP characteristics were analyzed using descriptive statistics. Continuous variables were presented as mean with SD or median with IQR. Categorical variables were presented as frequencies (%) unless otherwise stated.
Qualitative feedback from acceptability and usability tests (b) was documented in Excel, categorized by the type of participant (patient/HCP) and the feedback topic. These data were analyzed by the authors (C.B., M.G., H.v.M., R.T., A.T.) and reviewed during cocreation session 5. Quantitative and qualitative data were processed and analyzed using Excel (version 2016).
Results
Cocreation Sessions
Eleven HCPs from 9 hospitals participated in the working group (Table 1). In addition, a patient representative from the Dutch Kidney Cancer Patient Association participated. The average age of the working group was 48 years, with 14 years of experience in RCC care, and 55% worked in nonacademic teaching hospitals. Cocreation sessions of 2 to 3 hours each were held between June 2022 and June 2023, guided by the Dutch Urological Association and European Association of Urology guidelines to ensure alignment with current clinical practice.10,22
Table 1.
Baseline Characteristics of Health Care Professionals Who Participated in the Working Group, Needs Assessment Study, and Acceptability and Usability Testing
| HCP characteristic | Working group (n = 11) | Needs assessment study (n = 31) | Acceptability and usability testing (n = 14) |
| Age, median (IQR), y | 49 (39-52)a | 45.1 (8.7) | 46.3 (9.1) |
| Sex, No. (%) | |||
| Male | 6 (54.5) | 13 (41.9) | 8 (57.1) |
| Female | 5 (45.5) | 17 (54.8) | 6 (42.9) |
| Other | — | 1 (3.2) | — |
| Function, No. (%) | |||
| Urologist | 7 (63.6) | 24 (77.4) | 8 (57.1) |
| Resident urology | — | 3 (9.7) | — |
| (Intervention) radiologist | 2 (18.2) | 1 (3.2) | 1 (7.1) |
| Nurse specialist (in training) | 1 (9.1) | 3 (9.7) | 2 (14.3) |
| Oncology nurse | — | — | 3 (21.4) |
| Medical oncologist | 1 (9.1) | — | — |
| Average professional experience with RCC, median (IQR), y | 15 (12-16)a | 12.5 (7.3) | 7.5 (5.4) |
| Organization type, No. (%) | |||
| Academic hospital | 5 (45.5) | 4 (12.9) | 5 (35.7) |
| Nonacademic teaching hospital | 6 (54.5) | 21 (67.7) | 5 (35.7) |
| Nonteaching hospital | — | 6 (19.4) | 4 (28.6) |
Abbreviations: HCP, health care professional; RCC, renal cell carcinoma.
aAge and average professional experience are presented as median (IQR) due to nonnormal distribution.
Needs Assessment Study
Eight patients participated in the interviews. Mean age was 69 years, and 63% were male. Most patients had been diagnosed over a year ago, and 50% were highly educated (Table 2). Interviews lasted approximately 1 hour.
Table 2.
Baseline Characteristics of Patients Who Participated in the Needs Assessment Study and Acceptability and Usability Testing
| Patient characteristic | Needs assessment study (semistructured interview, n = 8) | Acceptability and usability testing (think-out-loud session, n = 4) |
| Age, mean (SD), y | 69.4 (7.4) | 71.8 (5.0) |
| Male sex, No. (%) | 5 (62.5) | 3 (75.0) |
| Education levela, No. (%) | ||
| High | 4 (50.0) | 2 (50.0) |
| Middle | 2 (25.0) | 2 (50.0) |
| Low | 2 (25.0) | — |
| Treatment receivedb, No. (%) | ||
| Partial nephrectomy | 6 (60.0) | 3 (60.0) |
| Radical nephrectomy | — | — |
| Thermal ablation therapy | 3 (30.0) | 2 (40.0) |
| Active surveillance | 1 (10.0) | — |
| No. of months since diagnosis, No. (%) | ||
| 0-6 | 1 (12.5) | 1 (25.0) |
| 7-12 | 2 (25.0) | 1 (25.0) |
| >12 | 5 (62.5) | 2 (50.0) |
Education level was assessed during semistructured interviews based on the highest level of completed education based on the International Standard Classification of Education.
Treatment modalities were not mutually exclusive.
Patients reported that their diagnosis was often incidental (n = 7). After diagnosis, patients mainly had questions about treatment options and life expectancy (n = 4). Three patients experienced no real choice in treatment decision-making. Some patients reported that they were not informed on all available treatment options because they later heard of other existing treatment options (n = 2). Patients differed in needs for additional information, with some patients highlighting the need for clear and consistent information, as they reported receiving conflicting advice about recovery after treatment (n = 4) and 1 patient who was missing information on risk of recurrence of disease and metastasis. The tradeoffs involved in the decision-making process were removal of the tumor from the body (n = 4), renal function (n = 1), oncological efficacy (n = 2), and invasiveness of the treatment (n = 1).
Thirty-one HCPs participated in the needs assessment study, with a mean age of 45 years. Forty-two percent were male, and the majority worked as a urologist (77%), with a mean experience of 13 years, mostly working in nonacademic teaching hospitals (68%; Table 1).
Six HCPs (19%) agreed that patients with localized RCC should be more involved in decision-making. Eighteen HCPs were neutral (58%), and 6 disagreed (19%). Most HCPs (n = 27, 87%) reported that the final treatment decision should be made by the patient and HCP together. Four HCPs (13%) stated that patients should make the final decision after considering the HCP's opinion. None of the HCPs stated that HCPs should make the final decision after considering the patient’s opinion.
All HCPs reported that they were willing to make an effort for patient engagement in treatment decision-making. A PtDA for cT1 tumors was considered (highly) desirable by 80% of HCPs (n = 25). Five HCPs (16%) were neutral on this topic. Expected benefits of the PtDA reported by HCPs were improved information provision (n = 18), more patient engagement leading to improved decision-making (n = 5), and patients receiving a treatment in line with their values (n = 3). Expected disadvantages were confusion with patients because of too much information in the PtDA (n = 8), increased consultation time (n = 5), and low patient literacy (n = 2).
The results of the needs assessments study were presented to the working group. In cocreation session 2, they discussed whether and how the needs could be incorporated in the PtDA.
The PtDA
A 3-component PtDA was developed and evaluated for acceptability and usability testing, including (1) a decision aid handout outlining the treatment options; (2) an online PtDA with detailed information on RCC, treatment options, and values-clarification exercises; and (3) a personalized decision aid summary to facilitate decision-making during consultations (Figure 2, Supplementary Appendix III, https://www.urologypracticejournal.com).
Figure 2.
The 3-component cT1 renal masses patient decision aid and patient instructions for its use. Used with permission from ZorgKeuzeLab.
Acceptability and Usability Testing
Four patients participated, with a mean age of 72 years, 75% were male and 50% were highly educated (Table 2). Patients recognized that the PtDA addressed the information they were looking for (2/4). They valued the PtDA for providing a comprehensive overview and found the handout sheet helpful in summarizing treatment options (2/4). The PtDA summary was considered useful for preparing for follow-up consultations (2/4). However, 1 patient felt that the PtDA contained too much text.
Fourteen of the 23 invited HCPs took part in acceptability and usability testing. Mean age was 46 years, 43% were female, and 57% were urologists with a mean experience of 8 years in RCC care (Table 1). HCPs reported that the PtDA provided clear and concise information about the disease and treatment options, and served as a useful reference for patients and informal caregivers. They highlighted the values-clarification exercises as effective in identifying patient preferences and noted that the PtDA summary could improve SDM.
The results of the patient and HCP acceptability and usability testing were categorized (Supplementary Appendix IV, https://www.urologypracticejournal.com) and reviewed with the working group, leading to the final version of the PtDA.
Compatibility Evaluation With IPDAS Criteria
All 16 qualifying and certification criteria for PtDAs were met (Supplementary Appendix V, https://www.urologypracticejournal.com).
Discussion
This study describes the structured development of a PtDA for cT1 renal masses with involvement of all relevant stakeholders. This is the first Dutch PtDA for cT1 tumors. By publishing this development process, we hope that HCPs will gain better understanding of the development of PtDAs and, as a result, increase their use of this tool. Our development process led us to do 3 observations.
Despite increasing attention to SDM, there is little focus on this topic in RCC management. International RCC guidelines recommend SDM in treatment decision-making.10 A recent international study showed that one-third of patients with RCC report no involvement in treatment decision-making.11 Another study showed that this has not improved over the years.23 The results of our needs assessment study highlight that some patients felt they had no real choice in their treatment. Moreover, HCPs had varying views on patient involvement in RCC treatment decisions. On the other hand, they were all willing to make an effort to involve patients in decision-making, and most of them preferred a PtDA to support this. Expected barriers and facilitators identified by HCPs are consistent with findings from the existing literature.24
To successfully embed the PtDA in RCC care, a specific implementation strategy is recommended, with coproduction of PtDA content as an important first step.25 As the availability of RCC treatment varies internationally, it is important to establish a national development process to match the available treatment options. However, RCC treatment options are changing rapidly over time, emphasizing the need for structural maintenance of the PtDA. Collaboration with an independent company ensures that updates are performed rapidly when guidelines change. A separate study is currently being conducted to investigate the implementation of the PtDA as part of a multifaceted SDM intervention.26
In parallel with the development process of this PtDA, we have also developed a PtDA for metastatic clear cell RCC.27 The approach is largely the same as for the current tool. However, the development process for cT1 renal masses was less complicated than for metastatic RCC because several types of systemic therapy are available. In the Netherlands, reimbursement for systemic therapy varies between hospitals, leading to differences in treatment availability. As mentioned before, our developed PtDA consists of 3 components, supporting different steps of the SDM process.28 In SDM, the process of identifying the patient’s values is essential because it leads to better alignment of treatment decisions with the patient’s values and less decisional regret. PtDAs facilitate this through values-clarification methods. Internationally, only two-thirds of existing PtDAs provide explicit values-clarification methods.9 We included an online slider in our PtDA to let patients think about their own values regarding treatment decisions.29
This study has some limitations. First, the number of patients included in the needs assessment study and acceptability and usability testing is small, and patients were mostly highly educated. Given the small sample size and limited inclusion of patients with diverse ethnic and racial backgrounds, the generalizability of the PtDA is unknown. In addition, digital/language skills were not assessed in our study. This may have introduced bias. However, patients with limited (health/digital) literacy skills are often accompanied by relatives who can assist them.
Conclusions
In this study, a 3-component PtDA was developed to support SDM in cT1 renal masses treatment decision-making. The PtDA was found to be acceptable and usable by patients and HCPs. The existence and use of this PtDA could contribute to high-quality, patient-centered, and appropriate care for patients with RCC in the Netherlands. This PtDA is part of a multifaceted intervention, which is being investigated in a clinical trial (ClinicalTrials.gov NCT05548621).26 Afterward, the PtDA will be made available to all HCPs and patients in the Netherlands.
Acknowledgments
We thank all patients and health care professionals who contributed to the development of the cT1 renal masses patient decision aid. We express our gratitude to the Dutch Kidney Cancer Patient Association (Patiëntenvereniging blaas-of nierkanker) for the ongoing collaboration in this project. In addition, we thank the working group members for their participation in its development: Britt Suelmann, Patricia Zondervan, Harm van Melick, Jurgen Fütterer, Marco van Strijen, Corinne Tillier, Paul Verhagen, Deirdre Bochove, Anne Lont, Stijn Muselaers, Romy Lamers, and Else Wolak. We thank Mylan Terwisscha for contributions to the needs assessment study. Finally, we thank Asako Takahashi and Klemens Karssen from ZorgKeuzeLab for facilitating the development of the cT1 renal masses patient decision aid.
Footnotes
Funding/Support: This project was funded by the “Stichting Kwaliteitsgelden Medisch Specialisten” (SKMS) together with unrestricted grants from 4 pharmaceutical companies (Bristol Meyers Squib, Ipsen pharmaceuticals, Merck, Sharp & Dohme, and Pfizer). The funding agreement guaranteed the authors' autonomy in designing the study, interpreting data, and composing and publishing the report.
Conflict of Interest Disclosures: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Dr The works for ZorgKeuzeLab, a company that supported the development of this patient decision aid. The other authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Ethics Statement: This study received Institutional Review Board approval. All participating patients signed an informed consent form. The Medical Research Ethics Committee United (MEC-U) in Nieuwegein, the Netherlands, has confirmed that the Medical Research Involving Human Subjects Act (WMO) did not apply to this study (Ref: AW23.027/W22.125). The study was conducted in accordance with local laws and regulations. Local feasibility was approved at each participating hospital.
Author Contributions:
Conception and design: Bresser, van Melick, Garvelink, van der Nat, The.
Data analysis and interpretation: Bresser, van Melick, Garvelink.
Critical revision of the manuscript for scientific and factual content: Bresser, van Melick, Garvelink, van der Nat, The.
Drafting the manuscript: Bresser, van Melick, Garvelink.
Supervision: Bresser, van Melick, Garvelink, van der Nat, The.
Statistical analysis: Bresser, Garvelink.
Data Availability Statement: Data available on request from the authors.
Contributor Information
Regina The, Email: regina@zorgkeuzelab.nl.
Mirjam M. Garvelink, Email: m.garvelink@antoniusziekenhuis.nl.
References
- 1.Ferlay J, Colombet M, Soerjomataram I, et al. Cancer incidence and mortality patterns in Europe: estimates for 40 countries and 25 major cancers in 2018. Eur J Cancer. 2018;103:356-387. doi: 10.1016/j.ejca.2018.07.005 [DOI] [PubMed] [Google Scholar]
- 2.Integraal Kankercentrum Nederland (IKNL). Kanker in Nederland—Trends & prognoses tot en met 2032. 2023. [Google Scholar]
- 3.Integraal Kankercentrum Nederland (IKNL). Cijfers over nierkanker—Een overzicht van het voorkomen, de behandeling en overleving van nierkanker, gebaseerd op cijfers uit de Nederlandse Kankerregistratie. 2022. [Google Scholar]
- 4.Campbell SC, Clark PE, Chang SS, Karam JA, Souter L, Uzzo RG. Renal mass and localized renal cancer: evaluation, management, and follow-up: AUA guideline: part I. J Urol. 2021;206(2):199-208. doi: 10.1097/JU.0000000000001911 [DOI] [PubMed] [Google Scholar]
- 5.Stiggelbout AM, van der Weijden T, De Wit MPT, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ. 2012;344(256):e256. doi: 10.1136/bmj.e256 [DOI] [PubMed] [Google Scholar]
- 6.Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361-1367. doi: 10.1007/S11606-012-2077-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Sambasivarao SV. Where is the evidence? A systematic review of shared decision making and patient outcomes. J Soc Med Decis Mak. 2013;18(9):1199-1216. doi: 10.1177/0272989X14551638 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Hughes TM, Merath K, Chen Q, et al. Association of shared decision-making on patient-reported health outcomes and healthcare utilization. Am J Surg. 2018;216(1):7-12. doi: 10.1016/j.amjsurg.2018.01.011 [DOI] [PubMed] [Google Scholar]
- 9.Stacey D, Lewis KB, Smith M, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2024;1(1). doi: 10.1002/14651858.CD001431.pub6 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Ljungberg B, Albiges L, Abu-Ghanem Y, et al. European Association of Urology Guidelines on Renal Cell Carcinoma: The 2022 Update. Eur Urol. 2022;82(4):399-410. doi: 10.1016/j.eururo.2022.03.006 [DOI] [PubMed] [Google Scholar]
- 11.Giles R Maskens D Bick R, et al. Patient-reported experience of diagnosis, management, and burden of renal cell carcinomas: results from a global patient survey in 43 countries. Eur Urol Open Sci. 2022;37(37):3-6. doi: 10.1016/j.euros.2021.12.003 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Stacey D, Légaré F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. Cochrane database Syst Rev. 2017;4(4). doi: 10.1002/14651858.CD001431.pub5 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Grüne B, Kriegmair MC, Lenhart M, et al. Decision aids for shared decision-making in uro-oncology: a systematic review. Eur Urol Focus. 2022;8(3):851-869. doi: 10.1016/j.euf.2021.04.013 [DOI] [PubMed] [Google Scholar]
- 14.International Kidney Cancer Coalition. My Treatment, My Choice: A Decision Aid for People With Small Renal Masses 2020. 2020. [Google Scholar]
- 15.McAlpine K, Breau RH, Stacey D, et al. Development and acceptability testing of a patient decision aid for individuals with localized renal masses considering surgical removal with partial or radical nephrectomy. Urol Oncol. 2019;37(11):811.e1-811.e7. doi: 10.1016/j.urolonc.2019.08.014 [DOI] [PubMed] [Google Scholar]
- 16.McAlpine K, Breau RH, Stacey D, et al. Shared decision-making for the management of small renal masses—development and acceptability testing of a novel patient decision aid. Can Urol Assoc J. 2020;14(12):385-391. doi: 10.5489/CUAJ.6575 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Sun M, Abdollah F, Bianchi M, et al. Treatment management of small renal masses in the 21st century: a paradigm shift. Ann Surg Oncol. 2012;19(7):2380-2387. doi: 10.1245/s10434-012-2247-0 [DOI] [PubMed] [Google Scholar]
- 18.Cooperberg MR, Mallin K, Kane CJ, Carroll PR. Treatment trends for stage I renal cell carcinoma. J Urol. 2011;186(2):394-399. doi: 10.1016/j.juro.2011.03.130 [DOI] [PubMed] [Google Scholar]
- 19.Bukavina L, Bensalah K, Bray F, et al. Epidemiology of renal cell carcinoma: 2022 update. Eur Urol. 2022;82(5):529-542. doi: 10.1016/j.eururo.2022.08.019 [DOI] [PubMed] [Google Scholar]
- 20.Durand M-A, Witt J, Joseph-Williams N, et al. Minimum standards for the certification of patient decision support interventions: feasibility and application. Patient Educ Couns. 2015;98(4):462-468. doi: 10.1016/j.pec.2014.12.009 [DOI] [PubMed] [Google Scholar]
- 21.Joseph-Williams N, Newcombe R, Politi M, et al. Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Med Decis Making. 2014;34(6):699-710. doi: 10.1177/0272989X13501721 [DOI] [PubMed] [Google Scholar]
- 22.Nederlandse Vereniging voor Urologie. Herziening Richtlijn Niercelcarcinoom Niercelcarcinoom—Autorisatiefase. April 2021. 2020:1-97. Accessed December 3, 2024. https://portal.nvu.nl/WebserviceWordpress/qgws.asmx/nvu_get_document?id=8635076C-C6A9-40CD-BF34-4B939EBF2D02
- 23.Giles R, Marconi L, Jonasch EJM. Why is the GU oncology clinic lagging in shared-decision making?. 2024. Accessed December 3, 2024. https://urosource.uroweb.org/resource-centres/EAU24/258469/abstract [Google Scholar]
- 24.Waddell A, Lennox A, Spassova G, Bragge P. Barriers and facilitators to shared decision-making in hospitals from policy to practice: a systematic review. Implement Sci. 2021;16(1):74. doi: 10.1186/s13012-021-01142-y [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Joseph-Williams N, Abhyankar P, Boland L, et al. What works in implementing patient decision aids in routine clinical settings? A rapid realist review and update from the international patient decision aid standards collaboration. Med Decis Making. 2021;41(7):907-937. doi: 10.1177/0272989X20978208 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Bresser CC, Garvelink MM, van den Berg BMM, Dolk FCK, van der Nat PB, van Melick HHE. Evaluating the impact of a shared decision-making intervention for patients with renal cell carcinoma: the SDM-RCC study protocol. Eur Urol Oncol. 2025;8(2):245-248. doi: 10.1016/j.euo.2024.09.003 [DOI] [PubMed] [Google Scholar]
- 27.Bresser CC, van Melick HHE, The R, van der Nat PB, Garvelink MM. Improving value of care for renal cell carcinoma patients; development of a decision aid for metastatic clear-cell renal cell carcinoma. Patient Educ Couns. 2025;137:108800. doi: 10.1016/j.pec.2025.108800 [DOI] [PubMed] [Google Scholar]
- 28.Stiggelbout AM, Pieterse AH, De Haes JCJM. Shared decision making: concepts, evidence, and practice. Patient Educ Couns. 2015;98(10):1172-1179. doi: 10.1016/j.pec.2015.06.022 [DOI] [PubMed] [Google Scholar]
- 29.Witteman HO, Ndjaboue R, Vaisson G, et al. Clarifying values: an updated and expanded systematic review and meta-analysis. Med Decis Making. 2021;41(7):801-820. doi: 10.1177/0272989X211037946 [DOI] [PMC free article] [PubMed] [Google Scholar]