Improving shared decision making for lung cancer treatment by developing and validating an open-source web based patient decision aid for stage I-II non-small cell lung cancer.

The aim of this study was to develop and evaluate a proof-of-concept open-source individualized Patient Decision Aid (iPDA) with a group of patients, physicians, and computer scientists. The iPDA was developed based on the International Patient Decision Aid Standards (IPDAS). A previously published questionnaire was adapted and used to test the user-friendliness and content of the iPDA. The questionnaire contained 40 multiple-choice questions, and answers were given on a 5-point Likert Scale (1-5) ranging from "strongly disagree" to "strongly agree." In addition to the questionnaire, semi-structured interviews were conducted with patients. We performed a descriptive analysis of the responses. The iPDA was evaluated by 28 computer scientists, 21 physicians, and 13 patients. The results demonstrate that the iPDA was found valuable by 92% (patients), 96% (computer scientists), and 86% (physicians), while the treatment information was judged useful by 92%, 96%, and 95%, respectively. Additionally, the tool was thought to be motivating for patients to actively engage in their treatment by 92%, 93%, and 91% of the above respondents groups. More multimedia components and less text were suggested by the respondents as ways to improve the tool and user interface. In conclusion, we successfully developed and tested an iPDA for patients with stage I-II Non-Small Cell Lung Cancer (NSCLC).

Clinician perspectives on clinical decision support systems in lung cancer: Implications for shared decision-making.

BACKGROUND: Lung cancer treatment decisions are typically made among clinical experts in a multidisciplinary tumour board (MTB) based on clinical data and guidelines. The rise of artificial intelligence and cultural shifts towards patient autonomy are changing the nature of clinical decision-making towards personalized treatments. This can be supported by clinical decision support systems (CDSSs) that generate personalized treatment information as a basis for shared decision-making (SDM). Little is known about lung cancer patients' treatment decisions and the potential for SDM supported by CDSSs. The aim of this study is to understand to what extent SDM is done in current practice and what clinicians need to improve it. OBJECTIVE: To explore (1) the extent to which patient preferences are taken into consideration in non-small-cell lung cancer (NSCLC) treatment decisions; (2) clinician perspectives on using CDSSs to support SDM. DESIGN: Mixed methods study consisting of a retrospective cohort study on patient deviation from MTB advice and reasons for deviation, qualitative interviews with lung cancer specialists and observations of MTB discussions and patient consultations. SETTING AND PARTICIPANTS: NSCLC patients (N = 257) treated at a single radiotherapy clinic and nine lung cancer specialists from six Dutch clinics. RESULTS: We found a 10.9% (n = 28) deviation rate from MTB advice; 50% (n = 14) were due to patient preference, of which 85.7% (n = 12) chose a less intensive treatment than MTB advice. Current MTB recommendations are based on clinician experience, guidelines and patients' performance status. Most specialists (n = 7) were receptive towards CDSSs but cited barriers, such as lack of trust, lack of validation studies and time. CDSSs were considered valuable during MTB discussions rather than in consultations. CONCLUSION: Lung cancer decisions are heavily influenced by clinical guidelines and experience, yet many patients prefer less intensive treatments. CDSSs can support SDM by presenting the harms and benefits of different treatment options rather than giving single treatment advice. External validation of CDSSs should be prioritized. PATIENT OR PUBLIC CONTRIBUTION: This study did not involve patients or the public explicitly; however, the study design was informed by prior interviews with volunteers of a cancer patient advocacy group. The study objectives and data collection were supported by Dutch health care insurer CZ for a project titled 'My Best Treatment' that improves patient-centeredness and the lung cancer patient pathway in the Netherlands.

Practitioners' views on shared decision-making implementation: A qualitative study.

INTRODUCTION: Shared decision-making (SDM) refers to the collaboration between patients and their healthcare providers to make clinical decisions based on evidence and patient preferences, often supported by patient decision aids (PDAs). This study explored practitioner experiences of SDM in a context where SDM has been successfully implemented. Specifically, we focused on practitioners' perceptions of SDM as a paradigm, factors influencing implementation success, and outcomes. METHODS: We used a qualitative approach to examine the experiences and perceptions of 10 Danish practitioners at a cancer hospital experienced in SDM implementation. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data was analyzed through thematic analysis. RESULTS: Prior to SDM implementation, participants had a range of attitudes from skeptical to receptive. Those with more direct long-term contact with patients (such as nurses) were more positive about the need for SDM. We identified four main factors that influenced SDM implementation success: raising awareness of SDM behaviors among clinicians through concrete measurements, supporting the formation of new habits through reinforcement mechanisms, increasing the flexibility of PDA delivery, and strong leadership. According to our participants, these factors were instrumental in overcoming initial skepticism and solidifying new SDM behaviors. Improvements to the clinical process were reported. Sustaining and transferring the knowledge gained to other contexts will require adapting measurement tools. CONCLUSIONS: Applying SDM in clinical practice represents a major shift in mindset for clinicians. Designing SDM initiatives with an understanding of the underlying behavioral mechanisms may increase the probability of successful and sustained implementation.

Shared decision-making for prophylactic cranial irradiation in extensive-stage small-cell lung cancer: an exploratory study.

BACKGROUND: Prophylactic cranial irradiation (PCI) offers extensive-stage small-cell lung cancer (ES-SCLC) patients a lower chance of brain metastasis and slightly longer survival but is associated with a short-term decline in quality of life due to side-effects. This tradeoff between survival and quality of life makes PCI suitable for shared decision-making (SDM), where patients and clinicians make treatment decisions together based on clinical evidence and patient preferences. Despite recent clinical practice guidelines recommending SDM for PCI in ES-SCLC, as well as the heavy disease burden, research into SDM for lung cancer has been scarce. This exploratory study presents patients' experiences of the SDM process and decisional conflict for PCI. METHODS: Radiation oncologists (n=7) trained in SDM applied it in making the PCI decision with ES-SCLC patients (n=25). We measured patients' preferred level of participation (Control Preferences Scale), the level of SDM according to both groups (SDM-Q-9 and SDM-Q-Doc), and patients' decisional conflict [decisional conflict scale (DCS)]. RESULTS: Seventy-nine percent of patients preferred a collaborative role in decision-making, and median SDM scores given by patients and clinicians were 80 (IQR: 75.6-91.1) and 85.2 (IQR: 78.7-88.9) respectively, indicating satisfaction with the process. However, patients experienced considerable decisional conflict. Over 50% lacked clarity about which choice was suitable for them and were unsure what to choose. Sixty-four percent felt they did not know enough about the harms and benefits of PCI, and 60% felt unable to judge the importance of the harms/benefits in their life. CONCLUSIONS: ES-SCLC patients prefer to be involved in their treatment choice for PCI but a substantial portion experiences decisional conflict. Better information provision and values clarification may support patients in making a choice that reflects their preferences.

From multisource data to clinical decision aids in radiation oncology: The need for a clinical data science community.

Big data are no longer an obstacle; now, by using artificial intelligence (AI), previously undiscovered knowledge can be found in massive data collections. The radiation oncology clinic daily produces a large amount of multisource data and metadata during its routine clinical and research activities. These data involve multiple stakeholders and users. Because of a lack of interoperability, most of these data remain unused, and powerful insights that could improve patient care are lost. Changing the paradigm by introducing powerful AI analytics and a common vision for empowering big data in radiation oncology is imperative. However, this can only be achieved by creating a clinical data science community in radiation oncology. In this work, we present why such a community is needed to translate multisource data into clinical decision aids.

Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making.

BACKGROUND: Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. METHODS: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our user-base consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. RESULTS: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/ . CONCLUSIONS: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.

The Benefits and Challenges of Using Patient Decision Aids to Support Shared Decision Making in Health Care.

Shared decision making (SDM) and patient-centered care require patients to actively participate in the decision-making process. Yet with the increasing number and complexity of cancer treatment options, it can be a challenge for patients to evaluate clinical information and make risk-benefit trade-offs to choose the most appropriate treatment. Clinicians face time constraints and communication challenges, which can further hamper the SDM process. In this article, we review patient decision aids (PDAs) as a means of supporting SDM by presenting clinical information and risk data to patients in a format that is accessible and easy to understand. We outline the benefits and limitations of PDAs as well as the challenges in their development, such as a lengthy and complex development process and implementation obstacles. Lastly, we discuss future trends and how change on multiple levels-PDA developers, clinicians, hospital administrators, and health care insurers-can support the use of PDAs and consequently SDM. Through this multipronged approach, patients can be empowered to take an active role in their health and choose treatments that are in line with their values.