Decision support for breast cancer screening decisions: A single case pre-/post-test study.

Canadian guidelines recommend shared decision making for women less than 50 years old who are considering breast cancer screening. Nurses can support women in making these decisions. This single case pre-/post-test study measured change in decisional conflict after decision support for a woman less than 50 years old considering whether or not to initiate mammography screening. At baseline, a 44-year-old female at average risk of breast cancer was experiencing decisional conflict. She scored 1 out of 4 on the SURE test indicating feeling uninformed, unclear values, and inadequate support. After receiving decision coaching with a breast cancer screening decision aid by a nurse trained in decision coaching, she scored 4 on the SURE test indicating no decisional conflict. She reached an informed decision consistent with her values about mammography screening. Providing decisional support improved her knowledge, reduced her decisional conflict, and enhanced her confidence in making an informed decision that was consistent with her values.

Qualitative experiences, values, and decisional needs of patients with unprovoked venous thromboembolism who suffer bleeding-"This pill will keep you alive tonight".

Background: Contemporary guidelines recommend extended-duration anticoagulation among patients with a first unprovoked venous thromboembolism (VTE). Little is known about whether this recommendation aligns with patient values after a bleeding complication. Objectives: To explore the experiences, values, and decisional needs of patients with unprovoked VTE related to extended-duration treatment after an anticoagulant-associated bleed. Methods: In this descriptive, qualitative study, face to face online semistructured interviews were conducted with patients with unprovoked VTE who had experienced bleeding and continued anticoagulant treatment in one academic hospital in Canada. Data were analyzed using directed content analysis to identify themes. Themes were mapped onto the Ottawa Decisional Support Framework to identify decisional needs. Results: Between September and December 2021, 14 patients were interviewed (age 41-69 years; 9 females). Many patients were not aware of the option to stop anticoagulation and had limited understanding of the decision about treatment duration. Despite the negative quality-of-life impact of clinically relevant bleeding during VTE treatment, the majority continued anticoagulation due to emotional trauma of VTE diagnosis, a perception that bleeding would be more manageable than VTE recurrence, a desire to maintain a connection to subspecialty care or non-VTE related benefits (eg, cancer diagnosis, protection from COVID-19). Patients' decisional needs included lack of choice awareness, inadequate support for participation, lack of personalized risk stratification, and inadequate information on monitoring and managing heavy menstrual bleeding. Conclusion: Despite the impact of anticoagulant-associated bleeding on quality of life, patients preferred continuing with anticoagulation for reasons extending beyond secondary VTE prevention. Effective decision-support interventions are needed to address unmet decisional needs.

The Development and Testing of a Patient Decision Aid for Individuals with Homologous Recombinant Proficient Ovarian Cancer Who Are Considering Niraparib Maintenance Therapy.

New treatments for ovarian cancer are available that require trade-offs between progression-free survival and quality of life. The aim of this study was to develop a decision aid for patients with homologous recombinant proficient (HRP) tumors, as the benefit-harm ratio of niraparib needs consideration. This decision aid was created with a systematic and iterative development process based on the Ottawa Decision Support Framework. The decision aid was user-tested for acceptability, usability, and comprehensibility using a survey completed by a sample of patients with ovarian cancer and oncologists. This decision aid follows the International Patient Decision Aids Standards (IPDAS) criteria in its development. User-test respondents (n = 13 patients; 13 physicians) reported that the decision aid used language that was easy to follow (69% patients; 85% physicians), was an appropriate length (69% patients; 62% physicians) and provided the right amount of information (54% patients; 54% physicians). Most respondents (92% patients; 62% physicians) would recommend this decision aid for HRP patients considering niraparib. This is the first decision aid for patients with HRP ovarian cancers who are considering niraparib maintenance therapy. It is available on-line and is being further evaluated in a pragmatic clinical trial in Saskatchewan.

Impact of timing and format of patient decision aids for breast cancer patients on their involvement in and preparedness for decision making - the IMPACTT randomised controlled trial protocol.

BACKGROUND: After curative surgery for early-stage breast cancer, patients face a decision on whether to undergo surgery alone or to receive one or more adjuvant treatments, which may lower the risk of recurrence. Variations in survival outcomes are often marginal but there are differences in the side effects and other features of the options that patients may value differently. Hence, the patient's values and preferences are critical in determining what option to choose. It is well-researched that the use of shared decision making and patient decision aids can support this choice in a discussion between patient and clinician. However, it is still to be investigated what impact the timing and format of the patient decision aid have on shared decision making outcomes. In this trial, we aim to investigate the impact of a digital pre-consult compared to a paper-based in-consult patient decision aid on patients' involvement in shared decision making, decisional conflict and preparedness to make a decision. METHODS: The study is a randomised controlled trial with 204 patients at two Danish oncology outpatient clinics. Eligible patients are newly diagnosed with early-stage breast cancer and offered adjuvant treatments after curative surgery to lower the risk of recurrence. Participants will be randomised to receive either an in-consult paper-based patient decision aid or a pre-consult digital patient decision aid. Data collection includes patient and clinician-reported outcomes as well as observer-reported shared decision making based on audio recordings of the consultation. The primary outcome is the extent to which patients are engaged in a shared decision making process reported by the patient. Secondary aims include the length of consultation, preparation for decision making, preferred role in shared decision making and decisional conflict. DISCUSSION: This study is the first known randomised, controlled trial comparing a digital, pre-consult patient decision aid to an identical paper-based, in-consult patient decision aid. It will contribute evidence on the impact of patient decision aids in terms of investigating if pre-consult digital patient decisions aids compared to in-consult paper-based decision aids support the cancer patients in being better prepared for decision making. TRIAL REGISTRATION: ClinicalTrials.gov (NCT05573022).

Evaluation of an integrated knowledge translation approach used for updating the Cochrane Review of Patient Decision Aids: a pre-post mixed methods study.

BACKGROUND: When people who can use or benefit from research findings are engaged as partners on study teams, the quality and impact of findings are better. These people can include patients/consumers and clinicians who do not identify as researchers. They are referred to as "knowledge users". This partnered approach is called integrated knowledge translation (IKT). We know little about knowledge users' involvement in the conduct of systematic reviews. We aimed to evaluate team members' degree of meaningful engagement and their perceptions of having used an IKT approach when updating the Cochrane Review of Patient Decision Aids. METHODS: We conducted a pre-post mixed methods study. We surveyed all team members at two time points. Before systematic review conduct, all participating team members indicated their preferred level of involvement within each of the 12 steps of the systematic review process from "Screen titles/abstracts" to "Provide feedback on draft article". After, they reported on their degree of satisfaction with their achieved level of engagement across each step and the degree of meaningful engagement using the Patient Engagement In Research Scale (PEIRS-22) across 7 domains scored from 100 (extremely meaningful engagement) to 0 (no meaningful engagement). We solicited their experiences with the IKT approach using open-ended questions. We analyzed quantitative data descriptively and qualitative data using content analysis. We triangulated data at the level of study design and interpretation. RESULTS: Of 21 team members, 20 completed the baseline survey (95.2% response rate) and 17/20 (85.0% response rate) the follow-up survey. There were 11 (55%) researchers, 3 (15%) patients/consumers, 5 (25%) clinician-researchers, and 1 (5%) graduate student. At baseline, preferred level of involvement in the 12 systematic review steps varied from n = 3 (15%) (search grey literature sources) to n = 20 (100%) (provide feedback on the systematic review article). At follow-up, 16 (94.1%) participants were totally or very satisfied with the extent to which they were involved in these steps. All (17, 100%) agreed that the process was co-production. Total PEIRS-22 scores revealed most participants reported extremely (13, 76.4%) or very (2, 11.8%) meaningful degree of engagement. Triangulated data revealed that participants indicated benefit to having been engaged in an authentic research process that incorporated diverse perspectives, resulting in better and more relevant outputs. Reported challenges were about time, resources, and the logistics of collaborating with a large group. CONCLUSION: Following the use of an IKT approach during the conduct of a systematic review, team members reported high levels of meaningful engagement. These results contribute to our understanding of ways to co-produce systematic reviews.

When people who can use or benefit from research findings are engaged as partners on study teams, the quality and impact of findings are better. These people can include patients/consumers and clinicians who do not identify as researchers. This partnered approach is called integrated knowledge translation (IKT). This approach is rarely used and there is little information about using it with systematic reviews. A systematic review is a type of study that provides the best available evidence on a given topic by combining data from all existing studies. The aim of this study was to find out how engaged our team members felt when partnering on our systematic review about patient decision aids. Twenty of 21 team members participated in the study, including 11 researchers, 3 patients/consumers, 5 clinician-researchers, and 1 graduate student. We asked our team members to complete a survey about their experience as part of our IKT research process at two time points: before starting the study and after the study was done. Most team members felt extremely or very engaged in the process. All team members felt like partners. They gave examples of how this was achieved. Advantages to using the IKT approach included knowledge sharing, inclusion of more diverse voices, a more authentic research process, better and more relevant results, and personal benefits (e.g. enjoyment from being involved). Disadvantages to using this approach was that it took more time and resources. Three team members said there were no disadvantages. It is possible for patients/consumers and clinicians to partner and feel engaged with research teams doing systematic reviews. Our findings may help researchers engage knowledge users as equal partners on study teams.

Consensus on the definitions and descriptions of the domains of the OMERACT Core Outcome Set for shared decision making interventions in rheumatology trials.

OBJECTIVE: To gain consensus on the definitions and descriptions of the domains of the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials evaluating shared decision making (SDM) interventions. METHODS: Following the OMERACT Handbook methods, our Working Group (WG), comprised of 90 members, including 17 patient research partners (PRPs) and 73 clinicians and researchers, had six virtual meetings in addition to email exchanges to develop draft definitions and descriptions. The WG then conducted an international survey of its members to gain consensus on the definitions and descriptions. Finally, the WG members had virtual meetings and e-mail exchanges to review survey results and finalize names, definitions and descriptions of the domains. RESULTS: WG members contributed to developing the definitions. Fifty-two members representing four continents and 13 countries completed the survey, including 15 PRPs, 33 clinicians and 37 researchers. PRPs and clinicians/researchers agreed with all definitions and descriptions with agreements ranging from 87% to 100%. Respondents suggested wording changes to the names, definitions and descriptions to better reflect the domains. Discussions led to further simplification and clarification to address common questions/concerns about the domains. CONCLUSION: Our WG reached consensus on the definitions and descriptions of the domains of the core domain set for rheumatology trials of SDM interventions. This step is crucial to understand each domain and provides the foundation to identify instruments to measure each domain for inclusion in the Core Outcome Measurement Set. CLINICAL SIGNIFICANCE: The current study provides consensus-based definitions and descriptions for the domains of the OMERACT core domain set for shared decision making interventions from patients/caregivers, clinicians and researchers. This is a crucial step to understand each domain and provides the foundation to identify instruments to measure each domain for inclusion in the Core Outcome Measurement Set for trials of SDM interventions.

OMERACT Core outcome measurement set for shared decision making in rheumatic and musculoskeletal conditions: a scoping review to identify candidate instruments.

OBJECTIVES: Shared decision making (SDM) is a central tenet in rheumatic and musculoskeletal care. The lack of standardization regarding SDM instruments and outcomes in clinical trials threatens the comparative effectiveness of interventions. The Outcome Measures in Rheumatology (OMERACT) SDM Working Group is developing a Core Outcome Set for trials of SDM interventions in rheumatology and musculoskeletal health. The working group reached consensus on a Core Outcome Domain Set in 2020. The next step is to develop a Core Outcome Measurement Set through the OMERACT Filter 2.2. METHODS: We conducted a scoping review (PRISMA-ScR) to identify candidate instruments for the OMERACT Filter 2.2 We systematically reviewed five databases (Ovid MEDLINE®, Embase, Cochrane Library, CINAHL and Web of Science). An information specialist designed search strategies to identify all measurement instruments used in SDM studies in adults or children living with rheumatic or musculoskeletal diseases or their important others. Paired reviewers independently screened titles, abstracts, and full text articles. We extracted characteristics of all candidate instruments (e.g., measured construct, measurement properties). We classified candidate instruments and summarized evidence gaps with an adapted version of the Summary of Measurement Properties (SOMP) table. RESULTS: We found 14,464 citations, read 239 full text articles, and included 99 eligible studies. We identified 220 potential candidate instruments. The five most used measurement instruments were the Decisional Conflict Scale (traditional and low literacy versions) (n=38), the Hip/Knee-Decision Quality Instrument (n=20), the Decision Regret Scale (n=9), the Preparation for Decision Making Scale (n=8), and the CollaboRATE (n=8). Only 44 candidate instruments (20%) had any measurement properties reported by the included studies. Of these instruments, only 57% matched with at least one of the 7-criteria adapted SOMP table. CONCLUSION: We identified 220 candidate instruments used in the SDM literature amongst people with rheumatic and musculoskeletal diseases. Our classification of instruments showed evidence gaps and inconsistent reporting of measurement properties. The next steps for the OMERACT SDM Working Group are to match candidate instruments with Core Domains, assess feasibility and review validation studies of measurement instruments in rheumatic diseases or other conditions. Development and validation of new instruments may be required for some Core Domains.

Decision aids for people facing health treatment or screening decisions.

BACKGROUND: Patient decision aids are interventions designed to support people making health decisions. At a minimum, patient decision aids make the decision explicit, provide evidence-based information about the options and associated benefits/harms, and help clarify personal values for features of options. This is an update of a Cochrane review that was first published in 2003 and last updated in 2017. OBJECTIVES: To assess the effects of patient decision aids in adults considering treatment or screening decisions using an integrated knowledge translation approach. SEARCH METHODS: We conducted the updated search for the period of 2015 (last search date) to March 2022 in CENTRAL, MEDLINE, Embase, PsycINFO, EBSCO, and grey literature. The cumulative search covers database origins to March 2022. SELECTION CRITERIA: We included published randomized controlled trials comparing patient decision aids to usual care. Usual care was defined as general information, risk assessment, clinical practice guideline summaries for health consumers, placebo intervention (e.g. information on another topic), or no intervention. DATA COLLECTION AND ANALYSIS: Two authors independently screened citations for inclusion, extracted intervention and outcome data, and assessed risk of bias using the Cochrane risk of bias tool. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made (informed values-based choice congruence) and the decision-making process, such as knowledge, accurate risk perceptions, feeling informed, clear values, participation in decision-making, and adverse events. Secondary outcomes were choice, confidence in decision-making, adherence to the chosen option, preference-linked health outcomes, and impact on the healthcare system (e.g. consultation length). We pooled results using mean differences (MDs) and risk ratios (RRs) with 95% confidence intervals (CIs), applying a random-effects model. We conducted a subgroup analysis of 105 studies that were included in the previous review version compared to those published since that update (n = 104 studies). We used Grading of Recommendations Assessment, Development, and Evaluation (GRADE) to assess the certainty of the evidence. MAIN RESULTS: This update added 104 new studies for a total of 209 studies involving 107,698 participants. The patient decision aids focused on 71 different decisions. The most common decisions were about cardiovascular treatments (n = 22 studies), cancer screening (n = 17 studies colorectal, 15 prostate, 12 breast), cancer treatments (e.g. 15 breast, 11 prostate), mental health treatments (n = 10 studies), and joint replacement surgery (n = 9 studies). When assessing risk of bias in the included studies, we rated two items as mostly unclear (selective reporting: 100 studies; blinding of participants/personnel: 161 studies), due to inadequate reporting. Of the 209 included studies, 34 had at least one item rated as high risk of bias. There was moderate-certainty evidence that patient decision aids probably increase the congruence between informed values and care choices compared to usual care (RR 1.75, 95% CI 1.44 to 2.13; 21 studies, 9377 participants). Regarding attributes related to the decision-making process and compared to usual care, there was high-certainty evidence that patient decision aids result in improved participants' knowledge (MD 11.90/100, 95% CI 10.60 to 13.19; 107 studies, 25,492 participants), accuracy of risk perceptions (RR 1.94, 95% CI 1.61 to 2.34; 25 studies, 7796 participants), and decreased decisional conflict related to feeling uninformed (MD -10.02, 95% CI -12.31 to -7.74; 58 studies, 12,104 participants), indecision about personal values (MD -7.86, 95% CI -9.69 to -6.02; 55 studies, 11,880 participants), and proportion of people who were passive in decision-making (clinician-controlled) (RR 0.72, 95% CI 0.59 to 0.88; 21 studies, 4348 participants). For adverse outcomes, there was high-certainty evidence that there was no difference in decision regret between the patient decision aid and usual care groups (MD -1.23, 95% CI -3.05 to 0.59; 22 studies, 3707 participants). Of note, there was no difference in the length of consultation when patient decision aids were used in preparation for the consultation (MD -2.97 minutes, 95% CI -7.84 to 1.90; 5 studies, 420 participants). When patient decision aids were used during the consultation with the clinician, the length of consultation was 1.5 minutes longer (MD 1.50 minutes, 95% CI 0.79 to 2.20; 8 studies, 2702 participants). We found the same direction of effect when we compared results for patient decision aid studies reported in the previous update compared to studies conducted since 2015. AUTHORS' CONCLUSIONS: Compared to usual care, across a wide variety of decisions, patient decision aids probably helped more adults reach informed values-congruent choices. They led to large increases in knowledge, accurate risk perceptions, and an active role in decision-making. Our updated review also found that patient decision aids increased patients' feeling informed and clear about their personal values. There was no difference in decision regret between people using decision aids versus those receiving usual care. Further studies are needed to assess the impact of patient decision aids on adherence and downstream effects on cost and resource use.

Determinants of practice for providing decision coaching to facilitate informed values-based decision-making: protocol for a mixed-methods systematic review.

INTRODUCTION: Decision coaching is a non-directive approach to support patients to prepare for making health decisions. It is used to facilitate patients' involvement in informed values-based decision-making and use of evidence-based health information. A recent systematic review revealed low certainty evidence for its effectiveness with and without evidence-based information. However, there may be opportunities to improve the study and use of decision coaching in clinical practice by systematically investigating its determinants of practice. We aim to conduct a systematic review to identify and synthesise the determinants of practice for providing decision coaching to facilitate patient involvement in decision-making from multiple perspectives that influence its use. METHODS AND ANALYSIS: We will conduct a mixed-methods systematic review guided by the Cochrane' Handbook of Systematic Reviews. We will include studies reporting determinants of practice influencing decision coaching with or without evidence-based patient information with adults making a health decision for themselves or a family member. Systematic literature searches will be conducted in Medline, EMBASE, Cochrane CENTRAL and PsycINFO via Ovid and CINAHL via EBSCO including quantitative, qualitative and mixed-methods study designs. Additionally, experts in the field will be contacted.Two reviewers will independently screen and extract data. We will synthesise determinants using deductive and inductive qualitative content analysis and a coding frame developed specifically for this review based on a taxonomy of barriers and enablers of shared decision-making mapped onto the major domains of the Consolidated Framework for Implementation Research. We will assess the quality of included studies using the Mixed Methods Appraisal Tool. ETHICS AND DISSEMINATION: Ethical approval is not required as this systematic review involves only previously published literature. The results will be published in a peer-reviewed journal, presented at scientific conferences and disseminated to relevant consumer groups. PROSPERO REGISTRATION NUMBER: CRD42022338299.

Essential content for teaching implementation practice in healthcare: a mixed-methods study of teams offering capacity-building initiatives.

BACKGROUND: Applying the knowledge gained through implementation science can support the uptake of research evidence into practice; however, those doing and supporting implementation (implementation practitioners) may face barriers to applying implementation science in their work. One strategy to enhance individuals' and teams' ability to apply implementation science in practice is through training and professional development opportunities (capacity-building initiatives). Although there is an increasing demand for and offerings of implementation practice capacity-building initiatives, there is no universal agreement on what content should be included. In this study we aimed to explore what capacity-building developers and deliverers identify as essential training content for teaching implementation practice. METHODS: We conducted a convergent mixed-methods study with participants who had developed and/or delivered a capacity-building initiative focused on teaching implementation practice. Participants completed an online questionnaire to provide details on their capacity-building initiatives; took part in an interview or focus group to explore their questionnaire responses in depth; and offered course materials for review. We analyzed a subset of data that focused on the capacity-building initiatives' content and curriculum. We used descriptive statistics for quantitative data and conventional content analysis for qualitative data, with the data sets merged during the analytic phase. We presented frequency counts for each category to highlight commonalities and differences across capacity-building initiatives. RESULTS: Thirty-three individuals representing 20 capacity-building initiatives participated. Study participants identified several core content areas included in their capacity-building initiatives: (1) taking a process approach to implementation; (2) identifying and applying implementation theories, models, frameworks, and approaches; (3) learning implementation steps and skills; (4) developing relational skills. In addition, study participants described offering applied and pragmatic content (e.g., tools and resources), and tailoring and evolving the capacity-building initiative content to address emerging trends in implementation science. Study participants highlighted some challenges learners face when acquiring and applying implementation practice knowledge and skills. CONCLUSIONS: This study synthesized what experienced capacity-building initiative developers and deliverers identify as essential content for teaching implementation practice. These findings can inform the development, refinement, and delivery of capacity-building initiatives, as well as future research directions, to enhance the translation of implementation science into practice.

Decisional Support Needed when Facing Tough Decisions: Survey of Parents with Children having Differences of Sex Development.

Introduction: Parents of infants and young children newly diagnosed with differences of sex development (DSD) commonly face medical and psychosocial management decisions at a time when they are first learning about the condition and cannot consult their child for input. The aim of this study was to identify areas of greatest need for parental decisional support. Methods: 34 parents of children receiving care for DSD at one of three US children's hospitals participated in a survey to learn what clinical and psychosocial decisions needed to be made on behalf of their child. Parents were then asked to identify and focus on a "tough" decision and respond to questions assessing factors affecting decision-making, decision-making preferences, decisional conflict, and decision regret. Descriptive analyses were conducted. Results: Decisions about surgery and aspects of sharing information about their child's condition with others were the two most frequently reported decisions overall, experienced by 97% and 88% of parents, as well as most frequently nominated as tough decisions. Many parents reported mild to moderate levels of decisional conflict (59%) and decision regret (74%). Almost all parents (94%) reported experiencing at least one factor as interfering with decision-making (e.g., "worried too much about choosing the 'wrong' option"). Parents universally reported a desire to be involved in decision-making - preferably making the final decision primarily on their own (79%), or together with their child's healthcare providers (21%). The majority of parents judged healthcare providers (82%) and patient/family organizations (58%) as trustworthy sources of information. Discussion: Parents of children with DSD encounter medical, surgical, and psychosocial management decisions. Despite difficulties including emotional distress and informational concerns (including gaps and overload), parents express strong desires to play key roles in decision-making on behalf of their children. Healthcare providers can help identify family-specific needs through observation and inquiry in the clinical context. Together with families, providers should focus on specific clinical management decisions and support parental involvement in making decisions on behalf of young children with DSD.

Appraising publicly available online resources to support patients considering decisions about medical assistance in dying in Canada: an environmental scan.

BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, with legislation updated in 2021. It is unclear whether resources are available to help patients make this difficult decision; therefore, we sought to identify and quality appraise Canadian MAiD resources for supporting patients making this decision. METHODS: We conducted an environmental scan by searching Canadian websites for online MAiD resources that were published after the 2016 MAiD legislation, patient targeted, publicly accessible and able to inform decisions about MAiD in Canada. We excluded resources that targeted health care professionals or policy-makers, service protocols and personal narratives. Two authors appraised resources using the International Patient Decision Aids Standards (IPDAS) criteria and the Patient Education Materials Assessment Tool (PEMAT) for health literacy. Descriptive analysis was conducted. We defined resources as patient decision aids if 7 IPDAS defining criteria were met, and we rated resources as adequate for understandability or actionability if the PEMAT score was 70% or greater. RESULTS: We identified 80 MAiD resources. As of March 2023, 62 resources (90%) provided eligibility according to the 2021 legislation and 11 did not discuss any eligibility criteria. The median IPDAS score was 3 out of 7; 52% discussed alternative options and none provided benefits or harms. Of 80 resources, 59% were adequate for understandability and 29% were adequate for actionability. INTERPRETATION: Although many resources on MAiD were updated with 2021 legislation, few were adequate to support patients with lower health literacy. There is a need to determine whether a patient decision aid would be appropriate for people in Canada considering MAiD.

Co-creating a suite of patient decision aids for parents of an infant or young child with differences of sex development: A methods roadmap.

Introduction: Parents and guardians of infants and young children with differences of sex development (DSD) often face numerous health and social decisions about their child's condition. While proxy health decisions can be stressful in any circumstance, they are further exacerbated in this clinical context by significant variations in clinical presentation, parental lack of knowledge about DSD, irreversibility of some options (e.g., gonadectomy), a paucity of research available about long-term outcomes, and anticipated decisional regret. This study aimed to engage clinicians, parents, and an adult living with DSD to collaboratively develop a suite of patient decision aids (PDAs) to respond to the decisional needs of parents and guardians of infants and young children diagnosed with DSD. Methods: We used a systematic co-development process guided by the Ottawa Decision Support Framework and the International Patient Decision Aids Standards (IPDAS). The five steps were: literature selection, establish the team, decisional needs assessment, create the PDAs, and alpha testing. Results: We developed four PDAs to support parents/guardians of infants or young children diagnosed with DSD about four priority decisions identified through our decisional needs assessment: genetic testing, gender of rearing, genital surgery and gonadal surgery. All four PDAs include information for parents about DSD, the options, reasons to choose or avoid each option, and opportunities for parents/guardians to rate the importance of features of each option to clarify their values for these features. Qualitative feedback was positive from clinicians, parents and an adult living with DSD. Conclusions: These PDAs are clinical tools designed to support parents/guardians and to promote making an informed and shared DSD-related decision. While these tools are specific to DSD, they contain themes and elements translatable to other pediatric populations.

Recognizing patient partner contributions to health research: a systematic review of reported practices.

BACKGROUND: Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering non-financial (e.g., co-authorship, gift) or financial (e.g., honoraria, salary) compensation to patient partners can demonstrate appreciation for patient partner time and effort. However, little is known about how patient partners are currently compensated for their engagement in research. We sought to assess the prevalence of reporting patient partner compensation, specific compensation practices (non-financial and financial) reported, and identify benefits, challenges, barriers and enablers to offering financial compensation. METHODS: We conducted a systematic review of studies citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP I and II) reporting checklists (October 2021) within Web of Science and Scopus. Studies that engaged patients as research partners were eligible. Two independent reviewers screened full texts and extracted data from included studies using a standardized data abstraction form. Data pertaining to compensation methods (financial and non-financial) and reported barriers and enablers to financially compensating patient partners were extracted. No formal quality assessment was conducted since the aim of the review is to describe the scope of patient partner compensation. Quantitative data were presented descriptively, and qualitative data were thematically analysed. RESULTS: The search identified 843 studies of which 316 studies were eligible. Of the 316 studies, 91% (n = 288) reported offering a type of compensation to patient partners. The most common method of non-financial compensation reported was informal acknowledgement on research outputs (65%, n = 206) and co-authorship (49%, n = 156). Seventy-nine studies (25%) reported offering financial compensation (i.e., honoraria, salary), 32 (10%) reported offering no financial compensation, and 205 (65%) studies did not report on financial compensation. Two key barriers were lack of funding to support compensation and absence of institutional policy or guidance. Two frequently reported enablers were considering financial compensation when developing the project budget and adequate project funding. CONCLUSIONS: In a cohort of published studies reporting patient engagement in research, most offered non-financial methods of compensation to patient partners. Researchers may need guidance and support to overcome barriers to offering financial compensation.

The term patient engagement in research is used to describe research that is conducted "with" patients, rather than "on" patients. It is important that researchers recognize patient partners for their time and expertise. In order to gain a better understanding of approaches to recognition for patient partners we reviewed published studies to: (1) assess how often financial compensation is reported, (2) identify how patient partners are reported as being compensated, and (3) understand what benefits, challenges, barriers and enablers might exist to offering financial compensation. We conducted a systematic review of articles citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP) guidelines. We included all study designs if patients were engaged as partners. Studies in which patients were participants only were excluded. Data collected included information about details of patient partner compensation (financial and non-financial practices) as well as challenges relating to financial compensation. Numerical data were analysed descriptively. Textual data were coded by two reviewers and collated into overarching themes. Our search identified 316 papers. Of these, 91% reported offering compensation to patient partners. Most common methods were acknowledgement (65%) and co-authorship (49%). Only 79 studies (25%) reported offering financial compensation to patient partners. Limited funding and lack of institutional guidance were identified as two key barriers that may be preventing researchers from offering financial compensation. Our review found that non-financial methods of compensation are reported more often than financial compensation. Researchers may require more support when offering financial compensation to patient partners.

Exploring appropriateness criteria for informing the total knee arthroplasty decision-making process: An interpretive descriptive study.

RATIONAL: The Hawker appropriateness criteria for total knee arthroplasty (TKA) are: osteoarthritis symptoms impacting quality of life, evidence of osteoarthritis, trial of conservative treatments, patient's realistic expectations, patient/surgeon agree benefits outweigh risks, and readiness for surgery. Little is known about the barriers and facilitators of using the Hawker et al. appropriateness criteria for TKA in clinical practice. AIMS AND OBJECTIVES: Explore the barriers and facilitators to using appropriateness criteria for TKA in making decisions for adults with knee osteoarthritis. METHODS: Interpretive descriptive qualitative study at an academic hospital. Purposive sampling aimed to recruit: (1) healthcare team members at all levels influencing care delivery, and (2) adults with TKA assessed at the hospital clinic. Semi-structured interviews asked about the barriers/facilitators to using the Hawker appropriateness criteria. Data analysis consisted of inductive thematic analysis with themes mapped to the Consolidated Framework for Implementation Research domains. RESULTS: Nine healthcare professionals and 14 adults with TKA participated and identified common barriers to using the Hawker appropriateness criteria: (a) intervention characteristics domain: difficulty to assess criteria, patients expecting healthcare professionals to decide, limited accessibility to conservative treatments; (b) individuals characteristics domain: no need to change current TKA process, clinical judgement limited to OA severity/age, implicit assessment of subjective criteria; (c) inner setting domain: TKA information received after decision made; and (d) outer setting domain: no timely access to TKA. A facilitator of use was evidence/buy-in fosters programme changes. CONCLUSION: Barriers to using the criteria relevant to clinical practice and the healthcare system were identified while only one facilitator was revealed. Interventions tailored to these barriers are needed to support the use of the Hawker appropriateness criteria in TKA decision-making.

Cultural adaptation of the Pan-Canadian Oncology Symptom triage and remote support practice guide for cancer-related fatigue in China: Integration of traditional Chinese medicine nursing evidence.

Objective: This study aimed at culturally adapting pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) Cancer-related fatigue (CRF) Practice Guide to enable its use in China. This article focuses on presenting the key cultural adaptation step: supplementing traditional Chinese medicine (TCM) nursing recommendations for CRF symptom management according to evidence. Methods: Guided by A Guideline Adaptation and Implementation Planning Resource (CAN-IMPLEMENT), the process for cultural adaptation of the CRF guide in the COSTaRS project included translation, expert committee review, acceptability and feasibility assessment, and targeted adaptation to include TCM nursing techniques for CRF management via the Delphi method. Results: First, an expert committee of nurses, nurse leaders, and researchers was established. The practice guide was translated and verified by the members of the expert committee. Nurses then rated the practice guide for acceptability and feasibility. Concurrently, 83 stakeholders (nurses and patients) identified five relevant TCM nursing techniques: acupuncture, moxibustion, acupressure therapy, Taijiquan, and auricular acupoint embedding. A systematic review of literature identified three clinical practice guidelines and four systematic reviews. Through two rounds of Delphi expert consultation, five TCM care strategies were added into the culturally adapted COSTaRS practice guide. Conclusions: Cultural adaptation of the Canadian CRF practice guide involved not only language translation but also the addition of relevant TCM evidence. Combining TCM evidence and the Delphi method was a novel aspect of the cultural adaptation process. Further research is needed to investigate the implementation of the guide in appropriate settings in China.

Evaluation of an educational program for nurses providing cancer symptom management: The pan-Canadian Oncology Symptom Triage and Remote Support Online Tutorial.

Purpose: To evaluate the acceptability of the pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) open-access online tutorial and its impact on nurses' knowledge and perceived confidence in symptom management. Methods: Retrospective pre-/post-test evaluation of nurses who completed the tutorial knowledge test and/or acceptability survey. The tutorial was modeled after the previously evaluated in-person workshop to prepare nurses providing cancer symptom management using COSTaRS practice guides. Results: From 2017-2021, 743 nurses completed the knowledge test, and 749 nurses evaluated the tutorial. Mean knowledge score was 4.4/6 and 83% of participants achieved passing scores. Compared to pre-tutorial, nurses improved their perceived confidence in assessing, triaging, guiding patients in self-care (p<0.001), and ability to use the COSTaRS guides (p<0.001). Nurses rated the tutorial as easy to understand (95%), just the right amount of information (92%), providing new information (75%), overall good to excellent (89%), and would recommend it to others (83%). Conclusions: More than 700 nurses accessed the tutorial. After completion, nurses demonstrated good knowledge and improved perceived confidence in cancer symptom management.

Quality of patient decision aids to support the public making COVID-19 decisions: An online environmental scan.

OBJECTIVE: To identify and appraise the quality of COVID-19 patient decision aids (PtDAs). METHODS: We conducted an environmental scan of online publicly available COVID-19 PtDAs. Two reviewers independently searched and extracted data. We calculated median International Patient Decision Aid Standards (IPDAS) scores and proportion scoring > 70% on Patient Education Materials Information Tool (PEMAT) adequate for understandability and actionability. RESULTS: Of 876 resources identified, 12 were PtDAs. Decisions focused on initial COVID-19 vaccination series (n = 9), location of care for elderly (n = 2), and social distancing (n = 1). All 12 PtDAs were written materials and two had accompanying videos. The median IPDAS score minimizing risk of biased decisions was 4 of 6 items (IQR 1, range 2-4). For PEMAT, 92% had adequate for understandability and none for actionability. CONCLUSIONS: We identified few online publicly available COVID-19 PtDAs and none were about COVID-19 vaccination boosters or treatment. PtDAs scored poorly on actionability and none met all IPDAS criteria for minimizing risk of biased decisions. PRACTICE IMPLICATIONS: PtDA developers for COVID-19 and future pandemics should ensure their PtDAs meet all IPDAS criteria for minimizing risk of bias, have adequate scores for actionability, and are disseminated in the A to Z inventory.