Australian cardiovascular disease (CVD) prevention guidelines recommend absolute CVD risk assessment, but less than half of eligible patients have the required risk factors recorded due to fragmented implementation over the last decade. Co-designed decision aids for general practitioners (GPs) and consumers have been developed that improve knowledge barriers to guideline-recommended CVD risk assessment and management. This study used a stakeholder consultation process to identify and pilot test the feasibility of implementation strategies for these decision aids in Australian primary care.
This mixed methods study included: (1) stakeholder consultation to map existing implementation strategies (2018-20); (2) interviews with 29 Primary Health Network (PHN) staff from all Australian states and territories to identify new implementation opportunities (2021); (3) pilot testing the feasibility of low, medium, and high resource implementation strategies (2019-21). Framework Analysis was used for qualitative data and Google analytics provided decision support usage data over time.
Informal stakeholder discussions indicated a need to partner with existing programs delivered by the Heart Foundation and PHNs. PHN interviews identified the importance of linking decision aids with GP education resources, quality improvement activities, and consumer-focused prevention programs. Participants highlighted the importance of integration with general practice processes, such as business models, workflows, medical records and clinical audit software. Specific implementation strategies were identified as feasible to pilot during COVID-19: (1) low resource: adding website links to local health area guidelines for clinicians and a Heart Foundation toolkit for primary care providers; (2) medium resource: presenting at GP education conferences and integrating the resources into audit and feedback reports; (3) high resource: auto-populate the risk assessment and decision aids from patient records via clinical audit software.
This research identified a wide range of feasible strategies to implement decision aids for CVD risk assessment and management. The findings will inform the translation of new CVD guidelines in primary care. Future research will use economic evaluation to explore the added value of higher versus lower resource implementation strategies.

Adeno-associated virus-based gene therapy points to a coming transformation in the treatment of people living with haemophilia, promising sustained bleed control and potential improvement in quality of life. Nevertheless, the consequences of introducing new genetic material are not trivial. The perceived benefits should not minimise the challenges facing patients in understanding the long-term risks and providing a valid and meaningful informed consent, whether in a research or clinical setting. Informed consent is a fundamentally important doctrine in both medical ethics and health law, upholding an individual\'s right to define their personal goals and make their own autonomous choices. Patients should be enabled to recognise their clinical situation, understand the implications of treatment and integrate every facet of their life into their decision. This review describes informed consent processes for haemophilia gene therapy clinical trials, factors affecting patients\' decision making and the availability of patient-centred decision support interventions, to ensure that patients\' interests are being protected. Regulatory guidance has been published for physicians and manufacturers in haemophilia on informed consent, including for gene therapy, while best-practice recommendations for patient-physician discussions are available. In all settings, however, communicating and presenting highly technical and complex therapeutic information is challenging, especially where multiple barriers to scientific knowledge and health literacy exist. We propose several evidence-informed strategies to enhance the consent procedure, such as utilising validated literacy and knowledge assessment tools as well as participatory learning environments over an extended period, to ensure that patients are fully cognisant of the consent they give or deny. Further research is needed to define new, creative approaches for patient education and the upholding of ethical values in the informed consent process for gene therapy. The lessons learnt and approaches developed within haemophilia could set the gold standard for good practice in ensuring ethical preparedness amidst advances in genetic therapies.
UNASSIGNED: Improving the informed consent process for people living with haemophilia considering gene therapy. Gene therapy is the process of replacing faulty genes with healthy ones. In haemophilia, gene therapy involves introducing a working copy of the gene for the clotting factor that patients are missing. Following treatment, patients should begin producing their own clotting factor normally. However, people living with haemophilia (PwH) need to be fully informed regarding the potential benefits and risks of gene therapy and what this means for them, whether as part of a research study or routine medical care.Patients must be respected and supported to make decisions about their own health and wellbeing, recognising their legal and moral right to set personal goals and make treatment choices. For this to happen in practice, patients should be aware of their individual health needs, understand the effects of treatment and consider lifestyle preferences in relation to their decisions. This article attempts to describe how informed consent is obtained in haemophilia gene therapy clinical trials, what affects a patient\'s ability to make decisions and the availability of information and support to respect and protect the interests of PwH.Regulators responsible for approving medical products have published guidance on informed consent for physicians and pharmaceutical manufacturers in haemophilia, including for gene therapy. Recommendations have been made about the best ways for PwH to discuss gene therapy with their physicians. Yet, poor communication of complex topics, such as gene therapy, can be problematic, especially if patients lack the skills and confidence to understand and discuss the science, or for physicians with limited time in clinic.We propose strategies to improve the consent process, so patients can feel more able to make informed decisions about new treatments. Further research is needed to find new, creative approaches for educating patients and ensuring that the informed consent process for gene therapy in haemophilia is ethical.

OBJECTIVE: For geriatric hip fracture patients, the decision between surgery and palliative, non-operative management is made through shared decision making (SDM). For this conversation, a physician must be familiar with the patient\'s goals of care (GOC). These are predominantly unknown for hip fracture patients and challenging to assess in acute setting. The objective was to explore these GOC of geriatric patients in case of a hip fracture.
METHODS: An expert panel gathered possible outcomes after a hip fracture, which were transformed into statements where participants indicated their relative importance on a 100-point scoring scale during interviews. These GOC were ranked using medians and deemed important if the median score was 90 or above. Patients were aged 70 years or older with a hip contusion due to similarities with the hip fracture population. Three cohorts based on frailty criteria and the diagnosis of dementia were made.
RESULTS: Preserving cognitive function, being with family and being with partner scored in all groups among the most important GOC. Both non-frail and frail geriatric patients scored return to pre-fracture mobility and maintaining independence among the most important GOC, where proxies of patients with a diagnosis of dementia scored not experiencing pain as the most important GOC.
CONCLUSIONS: All groups scored preserving cognitive function, being with family and being with partner among the most important GOC. The most important GOC should be discussed when a patient is presented with a hip fracture. Since patients preferences vary, a patient-centered assessment of the GOC remains essential.

Liveborn infants with non-mosaic trisomy 22 are rarely described in the medical literature. Reported lifespan of these patients ranges from minutes to 3 years, with the absence of cardiac anomalies associated with longer-term survival. The landscape for offering cardiac surgery to patients with rare autosomal trisomies is currently evolving, as has been demonstrated recently in trisomies 13 and 18. However, limited available data on patients with rare autosomal trisomies provides a significant challenge in perinatal counseling, especially when there are options for surgical intervention.
In this case report, we describe an infant born at term with prenatally diagnosed apparently non-mosaic trisomy 22 and multiple cardiac anomalies, including a double outlet right ventricle, hypoplastic aortic valve and severe aortic arch hypoplasia, who underwent cardiac surgery. The decisions made by her family lending to her progress and survival to this day were made with a focus on the shared decision making model and support in the prenatal and perinatal period. We also review the published data on survival and quality of life after cardiac surgery in infants with rare trisomies.
This patient is the only known case of apparently non-mosaic trisomy 22 in the literature who has undergone cardiac surgery with significant survival benefit. This case highlights the impact of using a shared decision making model when there is prognostic uncertainty.

The extent of shared decision making (SDM) use in the care of Black patients is limited. We explored preferences, needs, and challenges of Black patients to enhance SDM offerings.
We performed interviews with 32 Black patients receiving type 2 diabetes care in safety-net primary care practices caring predominantly for Black people.
The following 4 themes emerged: preference for humanistic communication, need to account for the role of family in decision making, need for medical information sharing, and mistrust of clinicians.
Given the dearth of research on SDM among ethnic and racial minorities, this study offers patient-perspective recommendations to improve SDM offerings for Black patients in primary care settings. To enhance SDM with Black patients, acknowledgment of the importance of storytelling as a strategy, to place medical information in a context that makes it meaningful and memorable, is recommended. Triadic SDM, in which family members are centrally involved in decision making, is preferred over classical dyadic SDM. There is a need to reconsider the universalism assumption underlying contemporary SDM models and the relevancy of current SDM practices that were developed mostly without the feedback of participants of ethnic, racial, and cultural minorities.Annals \"Online First\" article.

Patient decision aids can support shared decision making and improve decision quality. However, decision aids are not widely used in clinical practice due to multiple barriers. Integrating patient decision aids into the electronic health record (EHR) can increase their use by making them more clinically relevant, personalized, and actionable. In this article, we describe the procedures and considerations for integrating a patient decision aid into the EHR, based on the example of BREASTChoice, a decision aid for breast reconstruction after mastectomy. BREASTChoice\'s unique features include 1) personalized risk prediction using clinical data from the EHR, 2) clinician- and patient-facing components, and 3) an interactive format. Integrating a decision aid with patient- and clinician-facing components plus interactive sections presents unique deployment issues. Based on this experience, we outline 5 key implementation recommendations: 1) engage all relevant stakeholders, including patients, clinicians, and informatics experts; 2) explicitly and continually map all persons and processes; 3) actively seek out pertinent institutional policies and procedures; 4) plan for integration to take longer than development of a stand-alone decision aid or one with static components; and 5) transfer knowledge about the software programming from one institution to another but expect local and context-specific changes. Integration of patient decision aids into the EHR is feasible and scalable but requires preparation for specific challenges and a flexible mindset focused on implementation.
UNASSIGNED: Integrating an interactive decision aid with patient- and clinician-facing components into the electronic health record could advance shared decision making but presents unique implementation challenges.We successfully integrated a decision aid for breast reconstruction after mastectomy called BREASTChoice into the electronic health record.Based on this experience, we offer these implementation recommendations: 1) engage relevant stakeholders, 2) explicitly and continually map persons and processes, 3) seek out institutional policies and procedures, 4) plan for it to take longer than for a stand-alone decision aid, and 5) transfer software programming from one site to another but expect local changes.

Coronary artery anomalies include a spectrum of pathologic changes associated with sudden cardiac death in athletes. We highlight the inherent challenges in risk stratification and management of athletes with coronary artery anomalies by presenting 3 cases, each with distinct pathologic coronary anatomy and clinical management decisions. (Level of Difficulty: Intermediate.).

BACKGROUND: In patient care, demand is growing for digital health tools to enable remote services and enhance patient involvement. People with chronic conditions often have multiple health problems, and long-term follow-up is recommended to meet their needs and enable access to appropriate support. A digital tool for previsit preparation could enhance time efficiency and guide the conversation during the visit toward the patient\'s priorities.
OBJECTIVE: This study aims to develop a digital previsit tool and explore potential end user\'s perceptions, using a participatory approach with stroke as a case example.
METHODS: The digital tool was developed and prototyped according to service design principles, informed by qualitative participant data and feedback from an expert panel. All features were processed in workshops with a team that included a patient partner. The resulting tool presented questions about health problems and health information. Study participants were people with stroke recruited from an outpatient clinic and patient organizations in Sweden. Development and data collection were conducted in parallel. For conceptualization, the initial prototype was based on the Post-Stroke Checklist and research. Needs and relevance were explored in focus groups, and we used a web survey and individual interviews to explore perceived utility, ease of use, and acceptance. Data were thematically analyzed following the Framework Method.
RESULTS: The development process included 22 participants (9 women) with a median age of 59 (range 42-83) years and a median of 51 (range 4-228) months since stroke. Participants were satisfied or very satisfied with using the tool and recommended its use in clinical practice. Three main themes were constructed based on focus group data (n=12) and interviews (n=10). First, valuable accessible information illuminated the need for information to confirm experiences, facilitate responses, and invite engagement in their care. Amendments to the information in turn reconfigured their expectations. Second, utility and complexity in answering confirmed that the questions were relevant and comprehensible. Some participants perceived the answer options as limiting and suggested additional space for free text. Third, capturing needs and value of the tool highlighted the tool\'s potential to identify health problems and the importance of encouraging further dialog. The resulting digital tool, Strokehälsa [Strokehealth] version 1.0, is now incorporated into a national health platform.
CONCLUSIONS: The participatory approach to tool development yielded a previsit digital tool that the study group perceived as useful. The holistic development process used here, which integrated health information, validated questions, and digital functionality, offers an example that could be applicable in the context of other long-term conditions. Beyond its potential to identify care needs, the tool offers information that confirms experiences and supports answering the questions in the tool. The tool is freely shared for adaptation in different contexts.
BACKGROUND: researchweb 236341; https://www.researchweb.org/is/vgr/project/236341.

Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality and is significantly underdiagnosed in the community. Respiratory impairment is a key risk factor for perioperative morbidity and mortality. The National Institute for Health and Care Excellence (NICE) does not recommend routine spirometry before major surgery. However, in this article, we present the potential benefits of targeted spirometry in high-risk patient groups. Of 183 patients who underwent targeted preoperative spirometry, 25/70 (35.7%) of those with airflow obstruction had no previously known respiratory diagnosis. Of patients with known COPD, 20/46 (43.5%) were not prescribed optimum inhaled therapies for their degree of lung function deficit. Knowledge of lung function in respiratory disease helps to optimise patients perioperatively and facilitate shared decision making regarding the benefits and risk of surgeries. We propose that targeted spirometry should be used as part of the perioperative multidisciplinary team assessment of selected patients.

Shared decision making is a patient-centered clinical decision-making process that allows healthcare workers to share the existing empirical medical outcomes with patients before making critical decisions. This study aims to explore a project in a medical center of developing a mobile SDM in Taiwan. Chi Mei Medical Center developed the mobile SDM platform and conducted a survey of evaluation from healthcare workers. A three-tier platform that based on cloud infrastructure with seven functionalities was developed. The survey revealed that healthcare workers with sufficient SDM knowledge have an antecedent effect on the three perceptive factors of acceptance of mobile SDM. Resistance to change and perceived ease of use show significant effect on behavioral intention. We provided a comprehensive architecture of mobile SDM and observed the implementation in a medical center. The majority of healthcare workers expressed their acceptancem; however, resistance to change still present. It is, therefore, necessary to be eliminated by continuously promoting activities that highlight the advantages of the Mobile SDM platform. In clinical practice, we validated that the mobile SDM provides patients and their families with an easy way to express their concerns to healthcare workers improving significantly their relationship with each other.