My anesthesia Choice-HF: development and preliminary testing of a tool to facilitate conversations about anesthesia for hip fracture surgery.

BACKGROUND: Patients often desire involvement in anesthesia decisions, yet clinicians rarely explain anesthesia options or elicit preferences. We developed My Anesthesia Choice-Hip Fracture, a conversation aid about anesthesia options for hip fracture surgery and tested its preliminary efficacy and acceptability. METHODS: We developed a 1-page, tabular format, plain-language conversation aid with feedback from anesthesiologists, decision scientists, and community advisors. We conducted an online survey of English-speaking adults aged 50 and older. Participants imagined choosing between spinal and general anesthesia for hip fracture surgery. Before and after viewing the aid, participants answered a series of questions regarding key outcomes, including decisional conflict, knowledge about anesthesia options, and acceptability of the aid. RESULTS: Of 364/409 valid respondents, mean age was 64 (SD 8.9) and 59% were female. The proportion indicating decisional conflict decreased after reviewing the aid (63-34%, P < 0.001). Median knowledge scores increased from 50% correct to 67% correct (P < 0.001). 83% agreed that the aid would help them discuss options and preferences. 76.4% would approve of doctors using it. CONCLUSION: My Anesthesia Choice-Hip Fracture decreased decisional conflict and increased knowledge about anesthesia choices for hip fracture surgery. Respondents assessed it as acceptable for use in clinical settings. PRACTICE IMPLICATIONS: Use of clinical decision aids may increase shared decision-making; further testing is warranted.

A typology of evaluative health platforms: Commercial interests and their implications for patient voice.

Interactions in the healthcare system today involve an important new set of actors: evaluative health platforms (EHPs). These platforms are not neutral intermediaries, but active moderators of how patients express opinions, choose providers, and consume health-related information. This paper adds to our understanding of the varied and evolving commercial interests of EHPs and the implications these have for patient voice. We analyze 71 platforms in the USA, UK, and Germany and identify five ideal types: subscribers, analyzers, advertisers, regulators, and scammers. Each platform type enacts a unique competitive strategy through an evaluative infrastructure which constrains but also generates possibilities for patient voice. Based on our typology, we develop three contributions. First, we nuance universalizing claims about the consequences of platform capitalism by specifying the diverse strategies underpinning competition between EHPs in different countries, and showing how each strategy leads evaluative infrastructures to develop in ways that impact patient voice. Second, we show how patients can navigate the challenges of a complex EHP space by exercising their ability to choose between platforms. Finally, we outline the conditions platforms need to fulfil to become empowering. Overall, this study highlights the varied and complex relationship between platform business models and user voice, which exists not only in healthcare, but also in many other fields.

Using brief reflections to capture and evaluate end-user engagement: a case example using the COMPASS study.

BACKGROUND: Use of participatory research methods is increasing in research trials. Once partnerships are established with end-users, there is less guidance about processes research teams can use to successfully incorporate end-user feedback. The current study describes the use of a brief reflections process to systematically examine and evaluate the impact of end-user feedback on study conduct. METHODS: The Comparative Effectiveness of Trauma-Focused and Non-Trauma- Focused Treatment Strategies for PTSD among those with Co-Occurring SUD (COMPASS) study was a randomized controlled trial to determine the effectiveness of trauma-focused psychotherapy versus non-trauma-focused psychotherapy for Veterans with co-occurring posttraumatic stress disorder and substance use disorder who were entering substance use treatment within the Department of Veterans Affairs. We developed and paired a process of "brief reflections" with our end-user engagement methods as part of a supplemental evaluation of the COMPASS study engagement plan. Brief reflections were 30-minute semi-structured discussions with the COMPASS Team following meetings with three study engagement panels about feedback received regarding study issues. To evaluate the impact of panel feedback, 16 reflections were audio-recorded, transcribed, rapidly analyzed, and integrated with other study data sources. RESULTS: Brief reflections revealed that the engagement panels made recommended changes in eight areas: enhancing recruitment; study assessment completion; creating uniformity across Study Coordinators; building Study Coordinator connection to Veteran participants; mismatch between study procedures and clinical practice; therapist skill with patients with active substance use; therapist burnout; and dissemination of study findings. Some recommendations positively impact study conduct while others had mixed impact. Reflections were iterative and led to emergent processes that included revisiting previously discussed topics, cross-pollination of ideas across panels, and sparking solutions amongst the Team when the panels did not make any recommendations or recommendations were not feasible. CONCLUSIONS: When paired with end-user engagement methods, brief reflections can facilitate systematic examination of end-user input, particularly when the engagement strategy is robust. Reflections offer a forum of accountability for researchers to give careful thought to end-user recommendations and make timely improvements to the study conduct. Reflections can also facilitate evaluation of these recommendations and reveal end-user-driven strategies that can effectively improve study conduct. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04581434) on October 9, 2020; https://clinicaltrials.gov/ct2/show/study/NCT04581434?term=NCT04581434&draw=2&rank=1 .

Oncology patients' willingness to report their medication safety concerns from home: a qualitative study.

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.

Changes in intention to use an interprofessional approach to decision-making following training: a cluster before-and-after study.

BACKGROUND: Health professionals in home care work in interprofessional teams. Yet most training in decision support assumes a one-on-one relationship with patients. We assessed the impact of an in-person training session in interprofessional shared decision-making (IP-SDM) on home care professionals' intention to adopt this approach. METHODS: We conducted a secondary analysis of a cluster stepped-wedge trial using a before-and-after study design. We collected data among home care professionals from November 2016 to February 2018 in 9 health and social services centers in Quebec, Canada. The intervention was an in-person IP-SDM training session. Intention to engage in IP-SDM pre- and post-session (dependent variable) was compared using a continuing professional development evaluation scale (CPD-Reaction) informed by the Godin's Integrated Behavioral Model for health professionals. We also assessed socio-demographic and psychosocial variables (beliefs about capabilities, beliefs about consequences, social influence and moral norm). We performed bivariate and multivariate analysis to identify factors influencing post-intervention intention. We used the STROBE reporting guidelines for observational studies to report our results. RESULTS: Of 134 respondents who provided complete pairs of questionnaires (pre- and post-), most were female (90.9%), mean age was 42 (± 9.3) years and 66.9% were social workers. Mean intention scores decreased from 5.84 (± 1.19) to 5.54 (± 1.35) (Mean difference = -0.30 ± 1.16; p = 0.02). Factors associated with higher intention post-intervention were social influence (ß = 0.34, p = 0.01) and belief about capabilities (ß = 0.49, p < 0.01). CONCLUSION: After in-person IP-SDM training, healthcare professionals' intention to engage in IP-SDM decreased. However, the scope of this decrease is probably not clinically significant. Due to their association with intention, beliefs about capabilities, which translate into having a sense of self-competency in the new clinical behavior, and social influences, which translate into what important others think one should be doing, could be targets for future research aiming to implement IP-SDM in home care settings.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

Does engagement matter? The impact of patient and community engagement on implementation of cardiovascular health materials in primary care settings.

BACKGROUND: Engaging patients and community members in healthcare implementation, research and evaluation has become more popular over the past two decades. Despite the growing interest in patient engagement, there is scant evidence of its impact and importance. Boot Camp Translation (BCT) is one evidence-based method of engaging communities in research. The purpose of this report is to describe the uptake by primary care practices of cardiovascular disease prevention materials produced through four different local community engagement efforts using BCT. METHODS: EvidenceNOW Southwest (ENSW) was a randomized trial to increase cardiovascular disease (CVD) prevention in primary care practices. Because of its study design, Four BCTs were conducted, and the materials created were made available to participating practices in the "enhanced" study arm. As a result, ENSW offered one of the first opportunities to explore the impact of the BCT method by describing the uptake by primary care practices of health messages and materials created locally using the BCT process. Analysis compared uptake of locally translated BCT products vs. all other products among practices based on geography, type of practice, and local BCT. RESULTS: Within the enhanced arm of the study that included BCT, 69 urban and 13 rural practices participated with 9 being federally qualified community health centers, 14 hospital owned and 59 clinician owned. Sixty-three practices had 5 or fewer clinicians. Two hundred and ten separate orders for materials were placed by 43 of the 82 practices. While practices ordered a wide variety of BCT products, they were more likely to order materials developed by their local BCT. CONCLUSIONS: In this study, patients and community members generated common and unique messages and materials for cardiovascular disease prevention relevant to their regional and community culture. Primary care practices preferred the materials created in their region. The greater uptake of locally created materials over non-local materials supports the use of patient engagement methods such as BCT to increase the implementation and delivery of guideline-based care. Yes, patient and community engagement matters. TRIAL REGISTRATION AND IRB: Trial registration was prospectively registered on July 31, 2015 at ClinicalTrials.gov (NCT02515578, protocol identifier 15-0403). The project was approved by the Colorado Multiple Institutional Review Board and the University of New Mexico Human Research Protections Office.

Shared decision-making needs, barriers, and facilitators of patients with newly diagnosed advanced cancer in the hospital: a multi-level, mixed-methods study.

PURPOSE: Little is known about the shared decision-making (SDM) needs, barriers, and facilitators of patients with newly diagnosed advanced cancer in the hospital. Understanding this may improve SDM and cancer care quality in this vulnerable population. METHODS: A single-site, mixed-methods study of hospitalized patients with newly diagnosed advanced cancer, caregivers, and oncologists was conducted. After discharge, patient ± caregiver semi-structured interviews exploring SDM needs, barriers, and facilitators regarding their most important upcoming cancer-related decision were conducted. Oncologists were surveyed about patient knowledge and SDM needs using closed- and open-ended questions, respectively. Thematic analysis was performed for qualitative data with a focus on themes unique to or amplified by hospitalization. Descriptive statistics and the Chi-squared test were performed for quantitative data. RESULTS: Patients and caregivers reported high SDM needs surrounding treatment and prognostic information, leading to decisional conflict. Eight themes emerged: anticipated cancer treatment decisions, variable control preferences in decision-making, high cancer-related information needs and uncertainty, barriers and facilitators to information gathering during and post hospitalization, and decision-making facilitators. Among 32 oncologists, most (56%) reported patients were poorly informed about treatment and prognosis. Oncologists reported variable expectations about patient knowledge after hospitalization, facilitators to patient decision-making, and patient uncertainty while awaiting an outpatient oncologist appointment. CONCLUSION: Patients newly diagnosed with advanced cancer in the hospital have high SDM needs and experience decisional conflict. This may be due to barriers unique to or exacerbated by hospitalization. Further research is needed to develop strategies to address these barriers and enhance the facilitators identified in this study.

Patient Partnership Tools to Support Medication Safety in Community-Dwelling Older Adults: Protocol for a Nonrandomized Stepped Wedge Clinical Trial.

BACKGROUND: Preventable harms from medications are significant threats to patient safety in community settings, especially among ambulatory older adults on multiple prescription medications. Patients may partner with primary care professionals by taking on active roles in decisions, learning the basics of medication self-management, and working with community resources. OBJECTIVE: This study aims to assess the impact of a set of patient partnership tools that redesign primary care encounters to encourage and empower patients to make more effective use of those encounters to improve medication safety. METHODS: The study is a nonrandomized, cross-sectional stepped wedge cluster-controlled trial with 1 private family medicine clinic and 2 public safety-net primary care clinics each composing their own cluster. There are 2 intervention sequences with 1 cluster per sequence and 1 control sequence with 1 cluster. Cross-sectional surveys will be taken immediately at the conclusion of visits to the clinics during 6 time periods of 6 weeks each, with a transition period of no data collection during intervention implementation. The number of visits to be surveyed will vary by period and cluster. We plan to recruit patients and professionals for surveys during 405 visits. In the experimental periods, visits will be conducted with two partnership tools and associated clinic process changes: (1) a 1-page visit preparation guide given to relevant patients by clinic staff before seeing the provider, with the intention to improve communication and shared decision-making, and (2) a library of short educational videos that clinic staff encourage patients to watch on medication safety. In the control periods, visits will be conducted with usual care. The primary outcome will be patients' self-efficacy in medication use. The secondary outcomes are medication-related issues such as duplicate therapies identified by primary care providers and assessment of collaborative work during visits. RESULTS: The study was funded in September 2019. Data collection started in April 2023 and ended in December 2023. Data was collected for 405 primary care encounters during that period. As of February 15, 2024, initial descriptive statistics were calculated. Full data analysis is expected to be completed and published in the summer of 2024. CONCLUSIONS: This study will assess the impact of patient partnership tools and associated process changes in primary care on medication use self-efficacy and medication-related issues. The study is powered to identify types of patients who may benefit most from patient engagement tools in primary care visits. TRIAL REGISTRATION: ClinicalTrials.gov NCT05880368; https://clinicaltrials.gov/study/NCT05880368. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57878.

The Heart Failure Patient Foundation Position Statement on Research and Patient Involvement.

BACKGROUND: Heart Failure (HF) is a growing global public health problem affecting approximately 64 million people worldwide. OBJECTIVES: The Heart Failure Patient Foundation developed a position statement to advocate for adult patients with HF to be an active participant in research and for HF leaders to integrate patients throughout the research process. METHODS: A review of the literature and best practices was conducted. Based on the evidence, the HF Patient Foundation made recommendations regarding the inclusion of adult patients with HF throughout the research process. RESULTS: Healthcare clinicians, researchers and funding agencies have a role to ensure rigorous quality research is performed and implemented into practice. Inclusion of adult patients with HF throughout the research process can improve the lives of patients and families while advancing HF science. CONCLUSIONS: The HF Patient Foundation strongly advocates that patients with HF be involved in research from inception of the project through dissemination of findings to improve patient outcomes.

Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research.

OBJECTIVE: Patient and public involvement (PPI) is an essential ethical component in mental health research, and represents a major opportunity to improve translational mental health research. The goals of this review were to (1) provide a comprehensive overview of empirical research focusing on PPI of children and young people (CYP) in mental health research studies; (2) evaluate the results with CYP and parents of those affected; and (3) derive recommendations for PPI of CYP in future mental health research studies. METHODS: Based on an extensive literature review following the PRISMA guidelines, studies including CYP (age range: 0-21 years) in mental health research were identified and examined along a two-part analysis process considering their usability for mental health research. The conclusions drawn from the studies concerning CYP involvement were summarized and recommendations derived. RESULTS: Overall, 19 articles reported PPI of CYP (age range: 10-26 years) in mental health research and were included for further analyses. The integrated studies differed in the type of PPI, and in the way the participation and involvement processes were presented. CONCLUSION: Progress has been made in engaging CYP in mental health research, but there is a need for international standards, operationalization, and evaluation measures. Future research should go beyond merely reporting the PPI process itself. It should clearly indicate how and to what extent feedback from these PPI members was incorporated throughout the research process.

Patient and family engagement interventions for hospitalized patient safety: A scoping review.

AIM: To summarize existing studies that focused on improving hospitalized patient safety through patient and family engagement interventions to identify priorities and gaps. DESIGN: A scoping review. METHODS: Eight databases and citations of important reviews were searched on 30 September 2022. Two researchers independently screened the records. Then, two researchers extracted the data and cross-checked. The results were synthesized narratively, and a comparison was performed for studies from China and those from other countries. RESULTS: Ninety-eight studies were included. The results indicated that patient and family engagement interventions were applied to decrease the incidence of patient safety incidents, and to improve the healthcare providers' and patients' knowledge, attitude or practice of patient safety. Most studies only engaged patients and families at the direct care level, and the engagement strategies at the organization and health system levels were insufficient. For stakeholders, many studies failed to consider patients' perspectives in intervention design and report taking staff training as a supportive strategy. Healthcare providers, especially nurses, were the main implementers of current interventions. Certain differences were observed between studies from China and those from other countries in the above aspects. CONCLUSIONS: International interest in engaging patient and family for patient safety is growing. Future studies should enhance the patient and family engagement as a partner in various patient safety at the direct care level, and further explore the engagement at the organization and health system levels. RELEVANCE TO CLINICAL PRACTICE: Nurses, as the main formal caregivers for patients, should promote patient and family engagement in patient safety, especially at direct care level. Nurse should also incorporate the perspectives of patients in the design and implementation of interventions. REPORTING METHOD: PRISMA-ScR Checklist.

Shared decision making in the treatment of pediatric strabismus.

PURPOSE: To quantify the results of shared decision making in pediatric strabismus surgery from the parent perspective using the nine-item Shared Decision Making (SDM) Questionnaire and the associations of SDM score with parental education level; secondarily, to evaluate postoperative parental satisfaction as a function of child age, parental education level, SDM scores, and motor outcomes. METHODS: Consecutive parents of children 2-14 years of age with concomitant manifest strabismus that consented to strabismus surgery were surveyed using the SDM Questionnaire. A four-point Likert scale was used to gauge the level of postoperative satisfaction (POS). Potential predictors were estimated in multivariable regression analysis, with results adjusted for education level, children's age, and motor outcomes. RESULTS: A total of 100 parents (86 women) completed the survey and were included. Significant differences for SDM score were found between individuals with university-level versus the other three educational levels (P < 0.001 for primary and secondary levels; P = 0.017 for college or lyceum level). Categorical regression analysis showed that POS level was inversely correlated with education level and positively correlated with SDM score. Children's age at time of surgery and postoperative motor outcome were not significantly associated with POS. CONCLUSIONS: In our study cohort, SDM score was correlated with educational level. Satisfaction was greater among responders with higher SDM scores, indicating that SDM may help improve parent-reported satisfaction with treatment results.

The dynamics of knowledge sharing in chronically ill patient-led online health communities.

Patient-led online health communities (OHCs) provide an accessible way for patients to share their knowledge without the constraints of time and distance. By sharing knowledge, patients receive information from other members of the community that expands their knowledge. In this way, knowledge 'grows' and enhances the ability of patients in the community to adequately self-care in everyday life, that is, patient empowerment. This paper aims to understand the dynamics of knowledge sharing in patient-led OHCs. In search of an answer to the research question, the virtual ethnography research design was applied using an observational data collection method. The observational research was conducted in five patient-led OHCs of chronically ill patients on the Lithuanian version of the Facebook Platform. The results of the study provided insight into the dynamics of knowledge sharing by detailing the design of the discussions that took place in the studied communities and by characterising the path of knowledge sharing.

Development and evaluation of a decision aid for women eligible for organized breast cancer screening according to international standards: A multi-method study.

BACKGROUND: and purpose: In France, women lack information to make a shared decision to start breast cancer screening. Decision aids are useful to facilitate this discussion, yet few meet international standards. The objective of this project was to build, validate and measure the quality of a decision aid for organized breast screening in France, in line with international standards, intended for both women and healthcare professionals. MATERIALS AND METHODS: This mixed-methods study was conducted between January 2017 and June 2022. The prototype was developed from a qualitative study, systematic review and targeted literature review and alpha tested during two Delphi rounds. Readability was evaluated with the Flesch score and content with International Patient Decision Aid Standards Instrument (IPSASi). RESULTS: An online decision aid, accessible at www.Discutons-mammo.fr, written in French was developed. The content included eligibility, information about breast screening the advantages and disadvantages of screening, patient preferences and a patient-based discussion guide using text, infographics, and videos. The Flesch readability test score was 65.4 and the IPDASi construct quality score was 176 out of 188. CONCLUSIONS: This decision aid complies with IPDASi standards and could help women eligible for breast screening in France make a shared decision with a specialized healthcare professional about whether or not to participate in organized breast screening.

Perceived vs Actual Shared Decision-Making Behavior Among Urologists: A Convergent, Parallel, Mixed-Methods Study of Self-Reported Practice.

OBJECTIVE: To evaluate the association between self-perceived use of shared decision-making among urologists with use of validated prediction tools and self-described surgical decision-making. METHODS: This is a convergent mixed methods study of these parallel data from two modules (Shared Decision Making and Validated Prediction tools) within the 2019 American Urological Association (AUA) Annual Census. The shared decision-making (SDM) module queried aspects of SDM that urologists regularly used. The validated prediction tools module queried whether urologists regularly used, trusted, and found prediction tools helpful. Selected respondents to the 2019 AUA Annual Census underwent qualitative interviews on their surgical decision-making. RESULTS: In the weight sampled of 12,312 practicing urologists, most (77%) reported routine use of SDM, whereas only 30% noted regular use of validated prediction tools. On multivariable analysis, users of prediction tools were not associated with regular SDM use (31% vs 28%, P = .006) though was associated with use of decision aids f (32% vs 26%, P < .001). Shared decision-making emerged thematically with respect to matching treatment options, prioritizing goals, and navigating challenging decisions. However, the six specific components of shared decision-making ranged in their mentions within qualitative interviews. CONCLUSION: Most urologists report performing SDM as supported by its thematic presence in surgical decision-making. However, only a minority use validated prediction tools and urologists infrequently mention specific SDM components. This discrepancy provides an opportunity to explore how urologists perform SDM and can be used to support integrated strategies to implement SDM more effectively in clinical practice.

Implementation of a Decision Aid for Hip and Knee Osteoarthritis in Orthopedics: A Mixed-Methods Process Evaluation.

BACKGROUND: In orthopedics, the use of patient decision aids (ptDAs) is limited. With a mixed-method process evaluation, we investigated patient factors associated with accepting versus declining the use of the ptDA, patients' reasons for declining the ptDA, and clinicians' perceived barriers and facilitators for its use. METHODS: Patients with an indication for joint replacement surgery (N = 153) completed questionnaires measuring demographics, physical functioning, quality of life (EQ-5D-3L), and a visual analog scale (VAS) pain score at 1 time point. Subsequently, their clinician offered them the relevant ptDA. Using a retrospective design, we compared patients who used the ptDA (59%) with patients who declined (41%) on all these measures as well as the chosen treatment. If the use of the ptDA was declined, patients' reasons were recorded by their clinician and analysed (n = 46). To evaluate the experiences of clinicians (n = 5), semistructured interviews were conducted and thematically analyzed. Clinicians who did not use the ptDA substantially (<10 times) were also interviewed (n = 3). RESULTS: Compared with patients who used the ptDA, patients who declined use had higher VAS pain scores (7.2 v. 6.2, P < .001), reported significantly worse quality of life (on 4 of 6 EQ-5D-3L subscales), and were less likely to receive nonsurgical treatment (4% v. 28%, P < .001). Of the patients who declined to use the ptDA, 46% said they had enough information and felt ready to make a decision without the ptDA. The interviews revealed that clinicians considered the ptDAs most useful for newly diagnosed patients who had not received previous treatment. CONCLUSION: These results suggest that the uptake of a ptDA may be improved if it is introduced in the early disease stages of hip and knee osteoarthritis. HIGHLIGHTS: Patients who declined the use of a patient decision aid (ptDA) for hip and knee osteoarthritis reported more pain and worse quality of life.Most patients who declined to use a ptDA felt sufficiently well informed to make a treatment decision.Patients who declined the ptDA were more likely to have received prior treatment in primary care.Clinicians found the ptDA to be a helpful addition to the consultation, particularly for newly diagnosed patients.

Involving Patients into the LifeChamps Project: Preliminary Findings.

Patient involvement in research has been highlighted as a major requirement for the development of products and services that cover actual patients' needs. However, there has not been an agreement on a commonly used standard for patient involvement in research, at least not in the EU, partially because of lack of common terminology and implementation methodology. Within the standardization activities of "LifeChamps: A Collective Intelligent Platform To Support Cancer Champions", this qualitative study was developed to discover patients' views for their engagement in research. This is an ongoing qualitative study of semi-structured interviews of cancer survivors aged over 65 years of age, exiting the feasibility studies of the LifeChamps project in Stockholm and Thessaloniki. Findings from the thematic analysis of this study are expected to indicate requirements for involvement of patients in research studies as participants.