Patient Perspectives on a Patient-Facing Tool for Lung Cancer Screening.

BACKGROUND: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision-making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. AIM: This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. METHODS: We elicited patient perspectives by showing a provider-facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient-facing SDM tool. RESULTS: The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient-facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient-provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. CONCLUSION: These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. PATIENT OR PUBLIC CONTRIBUTION: Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM.

Prediction of COVID-19 patients' participation in financing informal care using machine learning methods: willingness to pay and willingness to accept approaches.

BACKGROUND: Informal care plays an essential role in managing the COVID-19 pandemic. Expanding health insurance packages that reimburse caregivers' services through cost-sharing policies could increase financial resources. Predicting payers' willingness to contribute financially accurately is essential for implementing such a policy. This study aimed to identify the key variables related to WTP/WTA of COVID-19 patients for informal care in Sanandaj city, Iran. METHODS: This cross-sectional study involved 425 COVID-19 patients in Sanandaj city, Iran, and 23 potential risk factors. We compared the performance of three classifiers based on total accuracy, specificity, sensitivity, negative likelihood ratio, and positive likelihood ratio. RESULTS: Findings showed that the average total accuracy of all models was over 70%. Random trees had the most incredible total accuracy for both patient WTA and patient WTP(0.95 and 0.92). Also, the most significant specificity (0.93 and 0.94), sensitivity (0.91 and 0.87), and the lowest negative likelihood ratio (0.193 and 0.19) belonged to this model. According to the random tree model, the most critical factor in patient WTA were patient difficulty in personal activities, dependency on the caregiver, number of caregivers, patient employment, and education, caregiver employment and patient hospitalization history. Also, for WTP were history of COVID-19 death of patient's relatives, and patient employment status. CONCLUSION: Implementing of a more flexible work schedule, encouraging employer to support employee to provide informal care, implementing educational programs to increase patients' efficacy, and providing accurate information could lead to increased patients' willingness to contribute and finally promote health outcomes in the population.

Evaluation of fear, willingness to seek care, and healthcare delivery preferences for patients with nephrolithiasis during the COVID-19 pandemic.

Background: Although minimal is known about coronavirus disease 2019 (COVID-19)'s impact on patient healthcare perceptions, improved understanding can guide healthcare providers to adequately address patient concerns. This cross-sectional study investigated how fear induced by COVID-19 impacted nephrolithiasis patients' perceptions, decision-making, and preferences for care delivery. Methods: Utilizing the validated Fear of COVID-19 Scale (FCV-19S), patients were surveyed at a single stone clinic during part of the COVID-19 pandemic, 03/2021-04/2022. One-way analysis of variance (ANOVA), Chi-square tests, and multinomial logistic regression evaluated the effect of sociodemographics on responses. Results: Two hundred and four surveys were completed. Mean age was 58±16 years, and 112 (54.9%) were women. Mean FCV-19S was 14.8±5.8 points (range, 7-33). Women and non-Caucasian races were associated with higher fear scores (P<0.01 and P=0.01 respectively). Stone prevention effort was not associated with fear (P=0.38). Poorer self-assessed health status was associated with increased stone prevention efforts (P=0.04). Preference for in-person care was reported in 89% of patients. Willingness to seek care varied by age and education, with decreased likelihood to seek care for middle-aged patients (P=0.04) and increased education (P=0.01). Conclusions: Perceived fear during the COVID-19 pandemic was highly variable in nephrolithiasis patients, with higher fear scores in women and non-Caucasians. Willingness to seek care during the pandemic varied with age, education level, symptom severity, COVID-19 fear, current stone status, and health status. Stone patients greatly preferred in-person medical care over telemedicine during COVID-19. Future studies are needed to further evaluate these health disparities, discrepancies in fear, and comfort in seeking stone-related healthcare to help us better inform health policymakers and provide patient-centered care.

Comparing Methods for Identifying Post-Market Patient Preferences at the Point of Decision-Making: Insights from Patients with Chronic Pain Considering a Spinal Cord Stimulator Device.

Purpose: To compare three methods for identifying patient preferences (MIPPs) at the point of decision-making: analysis of video-recorded patient-clinician encounters, post-encounter interviews, and post-encounter surveys. Patients and Methods: For the decision of whether to use a spinal cord stimulator device (SCS), a video coding scheme, interview guide, and patient survey were iteratively developed with 30 SCS decision-making encounters in a tertiary academic medical center pain clinic. Burke's grammar of motives was used to classify the attributed source or justification for a potential preference for each preference block. To compare the MIPPs, 13 patients' encounters with their clinician were video recorded and subsequently analyzed by 4 coders using the final video coding scheme. Six of these patients were interviewed, and 7 surveyed, immediately following their encounters. Results: For videos, an average of 66 (range 33-106) sets of utterances potentially indicating a patient preference (a preference block), surveys 33 (range 32-34), and interviews 25 (range 18-30) were identified. Thirty-eight unique themes (75 subthemes), each a preference topic, were identified from videos, surveys 19 themes (12 subthemes), and interviews 39 themes (54 subthemes). The proportion of preference blocks that were judged as expressing a preference that was clearly important to the patient or affected their decision was highest for interviews (72.8%), surveys (68.0%), and videos (27.0%). Videos mostly attributed preferences to the patient's situation (scene) (65%); interviews, the act of receiving or living with SCS (43%); surveys, the purpose of SCS (40%). Conclusion: MIPPs vary in the type of preferences identified and the clarity of expressed preferences in their data sets. The choice of which MIPP to use depends on projects' goals and resources, recognizing that the choice of MIPP may affect which preferences are found.

Preferences and perceptions of 617 migraine patients on acute and preventive migraine treatment attributes and clinical trial endpoints.

BACKGROUND: To identify the preferences and perceptions of migraine patients for acute and preventive treatment options and to investigate which treatment outcomes are the most important. DESIGN AND METHODS: The authors performed a choice-format survey in a cohort of migraine patients from Greece and Cyprus. A self-administered questionnaire developed in collaboration with the Greek Society of Migraine Patients was used. RESULTS: Questionnaires were collected from 617 migraine patients. Efficacy was preferred over safety as the single most important parameter, both in acute and preventive treatment. When analyzing single outcomes, patients prioritized a complete pain remission at 1-hour post-dose for acute therapies. Regarding migraine prevention, a 75% reduction in frequency, intensity of pain, accompanying symptoms and acute medication intake were considered as most important. Conversely, outcomes routinely used in clinical trials, namely complete or partial pain remission at 2-hours post-dose for acute treatment and 50% or 30% reduction in migraine frequency for prevention, were not deemed particularly relevant. Tablet formulation was mostly preferred, both in acute and preventive treatment. Conclusion: Listening to patients' needs may add a piece of the puzzle that is generally missing in clinical practice and often explains the lack of adherence in both acute and preventative anti-migraine therapies.

Towards evidence-based practice 2.0: leveraging artificial intelligence in healthcare.

Background: Evidence-based practice (EBP) involves making clinical decisions based on three sources of information: evidence, clinical experience and patient preferences. Despite popularization of EBP, research has shown that there are many barriers to achieving the goals of the EBP model. The use of artificial intelligence (AI) in healthcare has been proposed as a means to improve clinical decision-making. The aim of this paper was to pinpoint key challenges pertaining to the three pillars of EBP and to investigate the potential of AI in surmounting these challenges and contributing to a more evidence-based healthcare practice. We conducted a selective review of the literature on EBP and the integration of AI in healthcare to achieve this. Challenges with the three components of EBP: Clinical decision-making in line with the EBP model presents several challenges. The availability and existence of robust evidence sometimes pose limitations due to slow generation and dissemination processes, as well as the scarcity of high-quality evidence. Direct application of evidence is not always viable because studies often involve patient groups distinct from those encountered in routine healthcare. Clinicians need to rely on their clinical experience to interpret the relevance of evidence and contextualize it within the unique needs of their patients. Moreover, clinical decision-making might be influenced by cognitive and implicit biases. Achieving patient involvement and shared decision-making between clinicians and patients remains challenging in routine healthcare practice due to factors such as low levels of health literacy among patients and their reluctance to actively participate, barriers rooted in clinicians' attitudes, scepticism towards patient knowledge and ineffective communication strategies, busy healthcare environments and limited resources. AI assistance for the three components of EBP: AI presents a promising solution to address several challenges inherent in the research process, from conducting studies, generating evidence, synthesizing findings, and disseminating crucial information to clinicians to implementing these findings into routine practice. AI systems have a distinct advantage over human clinicians in processing specific types of data and information. The use of AI has shown great promise in areas such as image analysis. AI presents promising avenues to enhance patient engagement by saving time for clinicians and has the potential to increase patient autonomy although there is a lack of research on this issue. Conclusion: This review underscores AI's potential to augment evidence-based healthcare practices, potentially marking the emergence of EBP 2.0. However, there are also uncertainties regarding how AI will contribute to a more evidence-based healthcare. Hence, empirical research is essential to validate and substantiate various aspects of AI use in healthcare.

Preferences for Follow-Up Procedures among Patients Lost to Follow-Up after Smoking Cessation Intervention among Therapists-An Interview Study.

Achieving high follow-up rates after smoking cessation interventions (SCIs) is a general challenge. The aim of this study was to identify preferences among patients and therapists for improving follow-up rates and to assess smoking status at 6 months among patients lost to follow-up. From the Danish STOPbase for Tobacco and Nicotine, which collects data on SCI across health care, 20 representative patients lost to follow-up by routine procedures were identified together with 11 therapists. All participated in individual semi-structured phone interviews, which for patients also included 6-month smoking status. Deductive and inductive analyses were performed. Four themes emerged from the analyses with several subthemes, all regarding contacts. Both patients and therapists preferred to intensify the follow-up process by boosting it with additional attempts and using voice messages, e-mail and/or SMS, calling at specified times of the day and avoiding calls from unknown numbers. In addition, some patients mentioned that they were busy or were not carrying their mobile devices at the time of a call as a barrier. Some therapists mentioned that barriers could include an expectation of relapse, but also a poor mental state, the time of day and patient fear of public systems. Among the patients originally lost to follow-up, 35% (95% CI 16%-59%) experienced continuous smoking cessation for 6 months, and the overall national rate was 22% (21.6-23.3%). In conclusion, both patients and therapists preferred intensified follow-up. The 6-month smoking status for patients lost to follow-up seemed to be similar to that of the routinely followed-up patients. These findings will be examined experimentally in a larger study.

Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom: A Discrete Choice Experiment.

Background: Acute leukemia is a cancer of the white blood cells which progresses rapidly and aggressively. There are two types: acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML). The latter has a rare subtype: acute promyelocytic leukemia (APL). For some patients, following first-line treatment, remission is not achieved ("refractory disease"), and for others the leukemia returns after achieving remission ("relapse"). For these individuals, outcomes are typically poor. It is, therefore, important to understand patients' treatment priorities in this context. Methods: Building upon formative qualitative research, an online survey containing a discrete choice experiment (DCE) was designed to explore patients' treatment preferences in the relapsed/refractory setting. The DCE attributes were mode of administration; quality of life during treatment; chance of response; duration of response; and quality of life during response. Each respondent completed twelve scenarios containing two hypothetical treatments. Participants were eligible if they lived in the United Kingdom and had a diagnosis of acute leukemia. The data were analysed using a latent class model. Results: A total of 95 patients completed the survey. The latent class analysis identified two classes. For both, chance of response was the most important attribute. For class 1, every attribute was important, whereas for class 2, the only important attributes were quality of life (during treatment and response) and chance of response. A greater proportion of respondents would fall into class 1 overall, and those with ALL or APL and those more recently diagnosed were more likely to be in class 2. Conclusion: Our results indicate that patients are strongly concerned about the chance of response, as well as quality of life (to a lesser extent), when faced with different treatment options in the relapsed/refractory setting. However, there is significant preference heterogeneity within the patient population, and other treatment characteristics also matter to many.

Attitudes toward colorectal cancer and colonoscopy in Palestine: a questionnaire-based study.

Colorectal cancer (CRC) is a frequent cause of cancer-related mortality in the Palestinian population. This cross-sectional study was conducted from July 2019 to March 2020 and examined attitudes toward CRC and colonoscopy, as well as the interplay between both. Participants were recruited using convenience sampling from public spaces, governmental hospitals, and primary healthcare centers across 11 governorates in Palestine. Displaying a positive attitude was defined as agreeing on at least the median number of questions related to CRC (5 of 11 questions) or colonoscopy (6 of 10 questions). A total of 4623 participants were included. Most participants agreed that 'early detection of CRC increases the possibility of more effective treatment' (n = 4161, 89.7%). Similarly, the majority of participants agreed on 'preferring a physician with a gender similar to the participants to perform the colonoscopy' (n = 3738, 80.9%) and 'willingness to have colonoscopy even if the participant had to pay for it' (n = 3727, 80.6%). Furthermore, 3115 participants (67.4%) demonstrated positive attitudes toward CRC, while 2540 participants (55.0%) displayed similar attitudes toward colonoscopy. Participants from the West Bank and Jerusalem were more likely than those from the Gaza Strip to display positive attitudes toward colonoscopy (59.2% vs. 48.9%). Participants with positive attitudes toward CRC were more likely to also display positive attitudes toward colonoscopy and vice versa. About two thirds of study participants exhibited positive attitudes toward CRC, and 55.0% displayed positive attitudes toward colonoscopy. There was a reciprocal relationship between having positive attitudes toward CRC and colonoscopy.

Attribute Development in Health-Related Discrete Choice Experiments: A Systematic Review of Qualitative Methods and Techniques to Inform Quantitative Instruments.

OBJECTIVES: This review sought to identify the qualitative methods and techniques that researchers have used in the past decade to develop attributes and inform health-related discrete choice experiments (DCEs) surveys from a patient perspective. METHODS: The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for reporting systematic reviews. An adapted appraisal tool following guidelines for reporting qualitative research for quantitative instruments and criteria for attribute development in DCEs was applied for quality assessment and data extraction. A narrative approach was used to synthesize data. This examination included consideration of issues pertaining to sampling, data collection, data analysis, attribute list reduction, wording, methodological adaptations to capture patient preferences, and testing the pre-experimental design decisions of the DCE survey. RESULTS: Of 8505 articles identified for abstract screening, 680 were included for full-text screening, 36 of which met the inclusion criteria. Practices to improve methodological robustness included pre-data collection materials to inform instruments, data collection methods specific for decision-making scenarios, purposeful selection of data analysis methods to address the research question, and participants' involvement in reducing the list of attributes. Examples of methodological adaptations for patients were noted. CONCLUSIONS: DCEs have the potential to become a mixed-method approach in which the qualitative phase informs a reduced list of attributes for a survey, serves the predesign decisions of the experiment by testing trade-offs, overlapping, understandability, face, and content validity and provides explanations of the quantitative results. Establishing guidelines for using qualitative methods for DCE attribute development may help to broadly enhance the methodological robustness of DCEs.

Patient participation in orthopaedic care-a survey on hip surgery patients' preferences for and experiences of engagement in their health and healthcare.

INTRODUCTION: Quality in health services is increasingly associated with enabling patients to participate in their own health and healthcare by recognising their resources and needs. Despite a growing recognition as to whether such participation is enabled, little is known regarding opportunities for preference-based patient participation in orthopaedic care. AIMS: To investigate preference-based participation for patients in orthopaedic care due to hip surgery. METHODS: Patients across 17 Swedish orthopaedic units who had had hip surgery, due to hip fracture or osteoarthritis, January-April 2021 were invited to complete the validated 4Ps questionnaire. Of 1514 patients, 458 patients returned the questionnaire with reports on their preferences for and experiences of participation. Each of the 4Ps' 12 items were analysed separately using descriptive and comparative statistics. RESULTS: A complete match in preferences for, and experiences of, participation was achieved with variation between items for 41%-50% of the patients; if almost matches were included, this occurred for 57%-77% of the patients. Less participation than preferred was most common in terms of having had reciprocal communication, opportunities for partaking in planning, and in learning how to manage symptoms/issues. Hip fracture surgery was significantly associated with experiencing lower levels of participation than preferred. CONCLUSION: Though standardised care promotes efficient hip surgery care, our study suggests a need for more person-centred opportunities to engage. A discrepancy was noted between patients' resources and preparation for their participation in and beyond the hip surgery process, particularly for self-care activities, calling for better use of nursing resources. ID: NCT04700969 with the U.S National Institutes of Health Clinical Registry.

Stated patient preferences for overnight at-home diagnostic assessment of sleep disorders.

PURPOSE: The diagnostic workup for assessment of sleep disorders commonly involves overnight testing to assess sleep patterns and pathological events. So far, little is known about preferences for provision of home sleep tests to patients with sleep disorders. This study aims to close this gap by eliciting preferences for home sleep testing using a discrete choice experiment (DCE). METHODS: A DCE with seven attributes of at-home sleep testing and three levels per attribute was developed using a fractional factorial design. Patients with and without previous sleep testing experience were recruited from two large sleep centers in Germany. Coefficients for attribute levels were calculated using a conditional logit model to estimate their influence on choice decisions and calculate the relative importance of each attribute. RESULTS: 305 patients (54.5 ± 13,1 years, 65.3% male) were enrolled, and 288 surveys with complete data included for analysis. Attributes with greatest relevance were Waiting time to discuss sleep study results; Waiting time to conduct sleep study, and Sleep quality during measurement. Of lowest importance was Diagnostic accuracy of sleep study, followed by Effort to apply sleep study device. Significant heterogeneity in choice behavior was found, including differences by gender, willingness-to-pay for sleep studies, and previous experience with sleep studies. Preferred location for conducting sleep testing was at-home in 50.7% and in-lab in 46.9%. CONCLUSIONS: Preferences and relative importance of home sleep test attributes vary among different subgroups. Considering those preferences can be important for clinicians and policymakers when designing care pathways and planning of testing policies for sleep disorders.

Climate-sensitive health counselling in Germany: a cross-sectional study about previous participation and preferences in the general public.

BACKGROUND: In response to climate change (CC), medicine needs to consider new aspects in health counselling of patients. Such climate-sensitive health counselling (CSHC) may include counselling patients on preventing and coping with climate-sensitive diseases or on leading healthy and climate-friendly lifestyles. This study aimed to identify previous participation in and preferences for CSHC as well as associated sociodemographic and attitudinal factors among the general public in Germany. METHODS: We conducted a cross-sectional study in a population-based online panel in five German federal states (04-06/2022). We performed descriptive statistics and multivariable regression analysis to assess prior participation in CSHC and content preferences regarding CSHC, as well as associations between sociodemographic variables and general preference for CSHC. RESULTS: Among 1491 participants (response rate 47.1%), 8.7% explicitly reported having participated in CSHC, while 39.9% had discussed at least one CSHC-related topic with physicians. In the studied sample, 46.7% of participants would like CSHC to be part of the consultation with their physician, while 33.9% rejected this idea. Participants aged 21 to 40 years (versus 51 to 60), individuals alarmed about CC (versus concerned/cautious/disengaged/doubtful/dismissive), and those politically oriented to the left (vs. centre or right) showed greater preference for CSHC in the multivariable regression model. Most participants wanted to talk about links to their personal health (65.1%) as opposed to links to the health of all people (33.2%). CONCLUSIONS: Almost half of the participants in this sample would like to receive CSHC, especially those who are younger, more alarmed about CC and more politically oriented to the left. More research and training on patient-centred implementation of CSHC is needed.

Identification of Preference "Phenotypes" in Men With Prostate Cancer.

INTRODUCTION: Patient preference assessment is key to high-quality decision-making in men with prostate cancer. We aimed to determine if "phenotypes" could be identified among men with prostate cancer, with each phenotype representing a cohort with a distinct combination of preferences. We wished to learn if there was an association between phenotype and treatment selection. METHODS: A prospective cohort of men with prostate cancer received a pre-visit decision aid. This software used conjoint analysis to quantify relative patient preferences for treatment-associated survival, quality of life outcomes, and recovery time. We collected patient clinical data, physician recommendation for active treatment or surveillance, and treatments received. Preferences were analyzed using latent class analysis to identify distinct classes of preference phenotypes. We compared patient characteristics and treatment choice across phenotypes, both univariately and in a multivariable logistic regression. RESULTS: In 250 men who used the decision aid as part of routine care, latent class analysis revealed 3 phenotypic classes. Men in Class 1 had the highest concerns around recovery time and the lowest value on improving lifespan. Men in Class 2 had relatively evenly distributed concerns. Men in Class 3 had the lowest concerns around recovery time and risk of surgical complications. On multivariate analysis, treatment choice was not associated with preference-based phenotype. Only physician recommendation was associated with choice of active treatment. CONCLUSIONS: We identified the existence of 3 patient preference-based phenotypes in men with prostate cancer. Each phenotype had a unique combination of trade-offs when considering competing treatment outcomes. These phenotypes were not associated with treatment. Physician recommendation was the only factor determining treatment choice.

Preferences of people with diabetes for diabetes care in Germany: a discrete choice experiment.

OBJECTIVES: The objective of this study is to elicit health care preferences of people with diabetes and identify classes of people with different preferences. METHODS: A discrete choice experiment was conducted among people with diabetes in Germany comprising attributes of role division in daily diabetes care planning, type of lifestyle education, support for correct medication intake, consultation frequency, emotional support, and time spent on self-management. A conditional logit model and a latent class model were used to elicit preferences toward diabetes care and analyze preference heterogeneity. RESULTS: A total of 76 people with diabetes, recruited in two specialized diabetes care centers in Germany (mean age 51.9 years, 37.3% women, 49.1% type 2 diabetes mellitus, 50.9% type 1 diabetes mellitus), completed the discrete choice experiment. The most important attributes were consultation frequency, division in daily diabetes care planning, and correct medication intake. The latent class model detected preference heterogeneity by identifying two latent classes which differ mainly with respect to lifestyle education and medication intake. CONCLUSION: While the majority of people with diabetes showed preferences in line with current health care provision in Germany, a relevant subgroup wished to strengthen lifestyle education and medication intake support with an aid or website.

Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU.

Patient experience data (PED), provided by patients/their carers without interpretation by clinicians, directly capture what matters more to patients on their medical condition, treatment and impact of healthcare. PED can be collected through different methodologies and these need to be robust and validated for its intended use. Medicine regulators are increasingly encouraging stakeholders to generate, collect and submit PED to support both scientific advice in development programs and regulatory decisions on the approval and use of these medicines. This article reviews the existing definitions and types of PED and demonstrate the potential for use in different settings of medicines' life cycle, focusing on Patient-Reported Outcomes (PRO) and Patient Preferences (PP). Furthermore, it addresses some challenges and opportunities, alluding to important regulatory guidance that has been published, methodological aspects and digitalization, highlighting the lack of guidance as a key hurdle to achieve more systematic inclusion of PED in regulatory submissions. In addition, the article discusses opportunities at European and global level that could be implemented to leverage PED use. New digital tools that allow patients to collect PED in real time could also contribute to these advances, but it is equally important not to overlook the challenges they entail. The numerous and relevant initiatives being developed by various stakeholders in this field, including regulators, show their confidence in PED's value and create an ideal moment to address challenges and consolidate PED use across medicines' life cycle.

Developing attributes and Attribute-Levels for subacromial pain syndrome: A systematic review and qualitative study.

BACKGROUND: Subacromial pain syndrome (SAPS), the most common cause of shoulder pain, can be treated through different treatments with similar effects. Therefore, in terms of deciding on the right treatment fit, patient preferences need to be understood. We aimed to identify treatment characteristics that delineate interventions (attributes) and corresponding sets of specific categorical range (attribute-levels) for SAPS. METHODS: This multiple method study systematically reviewed both qualitative and quantitative studies on patient preferences for treatment of SAPS, which informed semi-structured interviews with nine clinicians and 14 patients. The qualitative data from the interviews was analyzed using the framework analysis formulated by Ritchie and Spencer. Attributes and attribute levels of the systematic review and interviews were summarized and categorized. RESULTS: The search resulted in 2.607 studies, 16 of which met the eligibility criteria. The review identified 120 potential attributes, which were synthesized into 25 potential attributes. Fourteen new potential attributes were identified through the interviews, equaling a total of 39 attributes across 11 categories. Levels for 37 attributes were identified through systematic review and interviews, we were unable to identify levels for two attributes. CONCLUSIONS: This study identified attributes and attribute levels for the treatment of SAPS. There was a discrepancy in the frequency of the represented attributes between the literature and interviews. This study may improve the understanding of patient preferences for the treatment of SAPS and help individualize care. Our study informs a future discrete choice experiment and supports shared decision-making in clinical practice.

Patient preferences for breast cancer screening: a systematic review update to inform recommendations by the Canadian Task Force on Preventive Health Care.

BACKGROUND: Different guideline panels, and individuals, may make different decisions based in part on their preferences. Preferences for or against an intervention are viewed as a consequence of the relative importance people place on the expected or experienced health outcomes it incurs. These findings can then be considered as patient input when balancing effect estimates on benefits and harms reported by empirical evidence on the clinical effectiveness of screening programs. This systematic review update examined the relative importance placed by patients on the potential benefits and harms of mammography-based breast cancer screening to inform an update to the 2018 Canadian Task Force on Preventive Health Care's guideline on screening. METHODS: We screened all articles from our previous review (search December 2017) and updated our searches to June 19, 2023 in MEDLINE, PsycINFO, and CINAHL. We also screened grey literature, submissions by stakeholders, and reference lists. The target population was cisgender women and other adults assigned female at birth (including transgender men and nonbinary persons) aged ≥ 35 years and at average or moderately increased risk for breast cancer. Studies of patients with breast cancer were eligible for health-state utility data for relevant outcomes. We sought three types of data, directly through (i) disutilities of screening and curative treatment health states (measuring the impact of the outcome on one's health-related quality of life; utilities measured on a scale of 0 [death] to 1 [perfect health]), and (ii) other preference-based data, such as outcome trade-offs, and indirectly through (iii) the relative importance of benefits versus harms inferred from attitudes, intentions, and behaviors towards screening among patients provided with estimates of the magnitudes of benefit(s) and harms(s). For screening, we used machine learning as one of the reviewers after at least 50% of studies had been reviewed in duplicate by humans; full-text selection used independent review by two humans. Data extraction and risk of bias assessments used a single reviewer with verification. Our main analysis for utilities used data from utility-based health-related quality of life tools (e.g., EQ-5D) in patients; a disutility value of about 0.04 can be considered a minimally important value for the Canadian public. When suitable, we pooled utilities and explored heterogeneity. Disutilities were calculated for screening health states and between different treatment states. Non-utility data were grouped into categories, based on outcomes compared (e.g. for trade-off data), participant age, and our judgements of the net benefit of screening portrayed by the studies. Thereafter, we compared and contrasted findings while considering sample sizes, risk of bias, subgroup findings and data on knowledge scores, and created summary statements for each data set. Certainty assessments followed GRADE guidance for patient preferences and used consensus among at least two reviewers. FINDINGS: Eighty-two studies (38 on utilities) were included. The estimated disutilities were 0.07 for a positive screening result (moderate certainty), 0.03-0.04 for a false positive (FP; "additional testing" resolved as negative for cancer) (low certainty), and 0.08 for untreated screen-detected cancer (moderate certainty) or (low certainty) an interval cancer. At ≤12 months, disutilities of mastectomy (vs. breast-conserving therapy), chemotherapy (vs. none) (low certainty), and radiation therapy (vs. none) (moderate certainty) were 0.02-0.03, 0.02-0.04, and little-to-none, respectively, though in each case findings were somewhat limited in their applicability. Over the longer term, there was moderate certainty for little-to-no disutility from mastectomy versus breast-conserving surgery/lumpectomy with radiation and from radiation. There was moderate certainty that a majority (>50%) and possibly a large majority (>75%) of women probably accept up to six cases of overdiagnosis to prevent one breast-cancer death; there was some uncertainty because of an indication that overdiagnosis was not fully understood by participants in some cases. Low certainty evidence suggested that a large majority may accept that screening may reduce breast-cancer but not all-cause mortality, at least when presented with relatively high rates of breast-cancer mortality reductions (n = 2; 2 and 5 fewer per 1000 screened), and at least a majority accept that to prevent one breast-cancer death at least a few hundred patients will receive a FP result and 10-15 will have a FP resolved through biopsy. An upper limit for an acceptable number of FPs was not evaluated. When using data from studies assessing attitudes, intentions, and screening behaviors, across all age groups but most evident for women in their 40s, preferences reduced as the net benefit presented by study authors decreased in magnitude. In a relatively low net-benefit scenario, a majority of patients in their 40s may not weigh the benefits as greater than the harms from screening whereas for women in their 50s a large majority may prefer screening (low certainty evidence for both ages). There was moderate certainty that a large majority of women 50 years of age and 50 to 69 years of age, who have usually experienced screening, weigh the benefits as greater than the harms from screening in a high net-benefit scenario. A large majority of patients aged 70-71 years who have recently screened probably think the benefits outweigh the harms of continuing to screen. A majority of women in their mid-70s to early 80s may prefer to continue screening. CONCLUSIONS: Evidence across a range of data sources on how informed patients value the potential outcomes from breast-cancer screening will be useful during decision-making for recommendations. The evidence suggests that all of the outcomes examined have importance to women of any age, that there is at least some and possibly substantial (among those in their 40s) variability across and within age groups about the acceptable magnitude of effects across outcomes, and that provision of easily understandable information on the likelihood of the outcomes may be necessary to enable informed decision making. Although studies came from a wide range of countries, there were limited data from Canada and about whether findings applied well across an ethnographically and socioeconomically diverse population. SYSTEMATIC REVIEW REGISTRATION: Protocol available at Open Science Framework https://osf.io/xngsu/ .

MMpowerment: Empowering patients with multiple myeloma for shared decision-making by developing an intervention to integrate personal preferences into digital care pathways.

OBJECTIVE: As part of a quality improvement initiative in the context of value-based health care we aimed to optimize the shared decision-making (SDM) process in the care pathway for Multiple Myeloma as part of a digital care pathway (DCP). For this, more insight was needed in health care professionals' (HCPs') perspectives on SDM, and how SDM elements could be addressed in a DCP for MM to facilitate HCPs' performance of SDM. METHODS: HCPs were interviewed as per the theory of planned behaviour and the model of organizational context and SDM (phase 1). Multidisciplinary development sessions were organized to discuss concepts of the solution with HCPs (phase 2). The solution was evaluated with two patients from the quality improvement team. RESULTS: In phase 1, ten interviews were held. HCPs' attitudes and the subjective norm towards SDM were positive, and the intention to perform SDM was high. The clinical environment (physical context, disease characteristics, assumptions about patient characteristics, and workflows) for MM posed challenges on the actual SDM behavior. Education and use of the DCP to create awareness of SDM were seen as possible facilitators for SDM. A prepared and active patient would facilitate the SDM process. In phase 2, three concept solutions were developed before arriving at the final solution. The final solution consisted of three elements to incorporate SDM steps in the DCP: 1) creating patient awareness and activation with two questions about their preferences prior to a consultation, 2) visualisation of preferences centrally in the DCP to trigger HCP to discuss them, 3) monitoring and improving SDM with patient-questionnaires after decision-making. Patients and HCPs were willing to implement it. CONCLUSION: HCPs intention to engage in SDM was high, but their actual behaviour was challenged by the clinical environment. A 3-element DCP-based intervention was developed to increase SDM. PATIENT OR PUBLIC CONTRIBUTION: Input on the solution was obtained from end-users including two patients and ten healthcare professionals.

Outcomes Following Percutaneous Coronary Intervention in Patients With Multivessel Disease Who Were Recommended for But Declined Coronary Artery Bypass Graft Surgery.

BACKGROUND: Patients may prefer percutaneous coronary intervention (PCI) over coronary artery bypass graft (CABG) surgery, despite heart team recommendations. The outcomes in such patients have not been examined. We sought to examine the results of PCI in patients who were recommended for but declined CABG. METHODS AND RESULTS: Consecutive patients with stable ischemic heart disease and unprotected left main or 3-vessel disease or Synergy Between Percutaneous Coronary Intervention With Taxus and Cardiac Surgery score >22 who underwent PCI after heart team review between 2013 and 2020 were included. Patients were categorized into 3 groups according to heart team recommendations on the basis of appropriate use criteria: (1) PCI-recommended; (2) CABG-eligible but refused CABG (CABG-refusal); and (3) CABG-ineligible. The primary end point was the composite of death, myocardial infarction, or stroke at 1 year. The study included 3687 patients undergoing PCI (PCI-recommended, n=1718 [46.6%]), CABG-refusal (n=1595 [43.3%]), and CABG-ineligible (n=374 [10.1%]). Clinical and procedural risk increased across the 3 groups, with the highest comorbidity burden in CABG-ineligible patients. Composite events within 1 year after PCI occurred in 55 (4.1%), 91 (7.0%), and 41 (14.8%) of patients in the PCI-recommended, CABG-refusal, and CABG-ineligible groups, respectively. After multivariable adjustment, the risk of the primary composite outcome was significantly higher in the CABG-refusal (hazard ratio [HR], 1.67 [95% CI, 1.08-3.56]; P=0.02) and CABG-ineligible patients (HR, 3.26 [95% CI, 1.28-3.65]; P=0.004) groups compared with the reference PCI-recommended group, driven by increased death and stroke. CONCLUSIONS: Cardiovascular event rates after PCI were significantly higher in patients with multivessel disease who declined or were ineligible for CABG. Our findings provide real-world data to inform shared decision-making discussions.