Danish Women Make Decisions about Participation in Breast Cancer Screening prior to Invitation Information: An Online Survey Using Experimental Methods.

INTRODUCTION: At mammography screening invitation, the Danish Health Authority recommends women aged 50 to 69 y make an informed decision about whether to be screened. Previous studies have shown that women have very positive attitudes about screening participation. Therefore, we hypothesized that Danish women may already have decided to participate in breast cancer screening prior to receiving their screening invitation at age 50 y. METHODS: We invited a random sample of 2,952 Danish women aged 44 to 49 y (prescreening age) to complete an online questionnaire about barriers to informed screening decision making using the official digital mailbox system in Denmark. We asked participants about their screening intentions using 3 different questions to which women were randomized: screening presented 1) as an opportunity, 2) as a choice, and 3) as an opportunity plus a question about women's stage of decision making. All women completed questions about background characteristics, intended participation in the screening program, use and impact of screening information, and preferences for the decision-making process. Data were linked to sociodemographic register data. RESULTS: A total of 790 (26.8%) women participated in the study. Herein, 97% (95% confidence interval: 96%-98%) reported that they wanted to participate in breast cancer screening when invited at age 50 y. When presented with the choice compared with the opportunity framing, more women rejected screening. When asked about their stage of decision making, most (87%) had already made a decision about screening participation and were unlikely to change their mind. CONCLUSION: In our study, almost all women of prescreening age wanted to participate in breast cancer screening, suggesting that providing information at the time of screening invitation may be too late to support informed decision making. HIGHLIGHTS: Almost all women of prescreening age (44-49 y) in our study wanted to participate in the Danish national mammography screening program starting at age 50 y.Early decision making represents a barrier for informed decision making as women in this study had intentions to participate in breast cancer screening prior to receiving an official screening invitation, and therefore, providing information at the time of screening invitation may be too late to support informed decision making.Very few women rejected screening participation; however, more women rejected screening when the information was framed as an active choice between having or declining breast cancer screening (continue with usual care) compared with presenting only the option of screening with no description of the alternative.Two-thirds of women reading the screening information in this study had unchanged attitudes toward screening after reading the presented information.

Person-centred medicine in the care home setting: development of a complex intervention.

BACKGROUND: Person-centred medicine is recommended in the care of older patients. Yet, involvement of care home residents and relatives in medication processes remains limited in routine care. Therefore, we aimed to develop a complex intervention focusing on resident and relative involvement and interprofessional communication to support person-centred medicine in the care home setting. METHODS: The development took place from October 2021 to March 2022 in the Municipality of Aarhus, Denmark. The study followed the Medical Research Council guidance on complex intervention development using a combination of theoretical, evidence-based, and partnership approaches. The patient involvement tool, the PREparation of Patients for Active Involvement in medication Review (PREPAIR), was included in a preliminary intervention model. Study activities included developing programme theory, engaging stakeholders, and exploring key uncertainties through interviews, co-producing workshops, and testing with end-users to develop the intervention and an implementation strategy. The Consolidated Framework for Implementation Research and the Interprofessional Shared Decision Making Model were used. Data were analysed using a rapid analysis approach. RESULTS: Before the workshops, six residents and four relatives were interviewed. Based on their feedback, PREPAIR was modified to the PREPAIR care home to fit the care home population. In total, ten persons participated in the co-producing workshops, including health care professionals and municipal managerial and quality improvement staff. The developed intervention prototype was tested for three residents and subsequently refined to the final intervention, including two fixed components (PREPAIR care home and an interprofessional medication communication template) delivered in a flexible three-stage workflow. Additionally, a multi-component implementation strategy was formed. In line with the developed programme theory, the intervention supported health care professionals´ awareness about resident and relative involvement. It provided a structure for involvement, empowered the residents to speak, and brought new insights through dialogue, thereby supporting involvement in medication-related decisions. The final intervention was perceived to be relevant, acceptable, and feasible in the care home setting. CONCLUSION: Our results indicate that the final intervention may be a viable approach to facilitate person-centred medicine through resident and relative involvement. This will be further explored in a planned feasibility study.

Shared decision making for patients with kidney failure to improve end-of-life care: Development of the DESIRE intervention.

AIM: To describe the development of a shared decision making intervention for planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services. BACKGROUND: End-of-life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End-of-life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end-of-life conversations. Health professionals report needing more skills to raise the issue of end-of-life care options within consultations and patients want to be able to discuss issues important to them about future care plans. METHODS: The development design was guided by the UK Medical Research Council's framework and a user-centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. RESULTS: Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end-of-life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. CONCLUSION: An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. IMPLICATIONS FOR PRACTICE: DESIRE is intended to support shared decision making about planning end-of-life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. IMPACT: What problem did the study address? International guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end-of-life care. What were the main findings? The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact? The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. REPORTING METHOD: This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript.

Integrating Patient Involvement Interventions within Clinical Practice: A Mixed-Methods Study of Health Care Professional Reasoning.

Background. Patient involvement interventions are complex interventions that improve patient involvement in treatment and care in health care systems. Studies report several benefits of patient involvement interventions and that health care professionals are positive about using them. However, they have not been explored as a collected group of interventions throughout the continuum of care and treatment. In addition, the relationship between patient involvement interventions and the clinical reasoning process of health care professionals has not been thoroughly studied. Design. This mixed-methods study was conducted at Aarhus University Hospital in Denmark between April and November 2022 using interview data from 12 health care professionals and survey data from 420 health care professionals. Informants were medical doctors, nurses, midwives, dietitians, physiotherapists, and occupational therapists who had direct contact with patients during their daily care and treatment. Quantitative data were analyzed using descriptive statistics; qualitative data were analyzed via inductive and deductive content analysis. Results. Communication and interaction were seen as overarching aspects of patient involvement, with patient involvement interventions being defined as concrete tools and methods to enhance health care professionals' explicit clinical reasoning process. Limitations. It is unclear if results are representative of all health care professionals at the hospital or only those with a positive view of patient involvement interventions. Conclusions. Patient involvement interventions are viewed as beneficial for patients and fit with the clinical reasoning of health care professionals. Clinical reasoning may be an active ingredient in the development and implementation of patient involvement interventions. Implications. In practice, health care professionals need training in person-centered communication and the ability to articulate their clinical reasoning explicitly. In research, a more in-depth understanding of the interrelations between patient involvement interventions and clinical reasoning is needed. Highlights: Communication and interaction are the fundamental goals of patient involvement in practice, regardless of which patient involvement intervention is being used.Clinical reasoning is often an unconscious process using tacit knowledge, but the use of patient involvement interventions may be a way for health care professionals (at both individual and group levels) to become more explicit about and aware of their reflections.Clinical reasoning can be viewed as a mechanism of change in the development and implementation of patient involvement interventions.

Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study.

AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. CONCLUSION: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. IMPACT: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. REPORTING METHOD: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

Feasibility of early digital health rehabilitation after cardiac surgery in the elderly: a qualitative study.

BACKGROUND: Increasing numbers of elderly patients experience prolonged decreased functional capacity and impaired quality of life after seemingly successful cardiac surgery. After discharge from hospital, these patients experience a substantial gap in care until centre-based cardiac rehabilitation commences. They may benefit from immediate coaching by means of mobile health technology to overcome psychological and physiological barriers to physical activity. The aim of this study was to explore the usability, acceptability, and relevance of a mobile health application designed to support remote exercise-based cardiac rehabilitation of elderly patients early after cardiac surgery from the perspective of patients, their relatives, and physiotherapists. METHODS: We adapted a home-based mobile health application for use by elderly patients early after cardiac surgery. Semi-structured dyadic interviews were conducted with a purposive sample of patients (n = 9), their spouses (n = 5), and physiotherapists (n = 2) following two weeks of the intervention. The transcribed interviews were analysed thematically. RESULTS: Three themes were identified: 1) creating an individual fit by tailoring the intervention; 2) prioritizing communication and collaboration; and 3) interacting with the mobile health application. Overall, the findings indicate that the mobile health intervention has the potential to promote engagement, responsibility, and motivation among elderly patients to exercise early after surgery. However, the intervention can also be a burden on patients and their relatives when roles and responsibilities are unclear. CONCLUSION: The mobile health intervention showed potential to bridge the intervention gap after cardiac surgery, as well as in fostering engagement, responsibility, and motivation for physical activity among elderly individuals. Nevertheless, our findings emphasize the necessity of tailoring the intervention to accommodate individual vulnerabilities and capabilities. The intervention may be improved by addressing a number of organizational and communicational issues. Adaptions should be made according to the barriers and facilitators identified in this study prior to testing the effectiveness of the intervention on a larger scale. Future research should focus on the implementation of a hybrid design that supplements or complements face-to-face and centre-based cardiac rehabilitation. TRIAL REGISTRATION: Danish Data Protection Agency, Central Denmark Region (1-16-02-193-22, 11 August 2022).

Patient involvement interventions for patients with kidney failure making end-of-life care decisions: a scoping review.

OBJECTIVE: The objective of this review was to investigate and map empirical evidence of patient involvement interventions to support patients with kidney failure making end-of-life care decisions in kidney services. INTRODUCTION: Clinical guidance integrating end-of-life care within kidney failure management pathways varies. Advance care planning interventions aimed at involving patients with kidney failure in their end-of-life care planning are established in some countries. However, there is limited evidence of the other types of patient involvement interventions integrated within services to support patients with kidney failure in making decisions about their end-of-life care. INCLUSION CRITERIA: This scoping review included studies exploring patient involvement interventions evaluated for patients with kidney failure considering end-of-life care, their relatives, and/or health professionals in kidney services. Studies of children under the age of 18 years were excluded. METHODS: The review was informed by JBI methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines. MEDLINE, Scopus, Embase, and CINAHL were searched for full-text studies in English, Danish, German, Norwegian, or Swedish. Two independent reviewers assessed the literature against the inclusion criteria. A relational analysis framework was used to synthesize the data extracted from the included studies, and to investigate and map different patient involvement interventions. RESULTS: The search identified 1628 articles, of which 33 articles met the inclusion criteria. A total of 23 interventions were described. Interventions targeted patients (n=3); health professionals (n=8); patients and health professionals (n=5); and patients, relatives, and health professionals (n=7). Intervention components included patient resources (eg, information, patient decision aids), consultation resources (eg, advance care planning, shared decision-making), and practitioner resources (eg, communication training). Patient involvement interventions were delivered within hospital-based kidney services. CONCLUSIONS: The review identified several ways to support patients with kidney failure to be involved in end-of-life care decisions. Future interventions may benefit from adopting a complex intervention framework to engage multiple stakeholders in the research and design of an intervention for shared decision-making between patients with kidney failure, their relatives, and health professionals about integrating end-of-life care options into their kidney disease management pathway.

Decision coaching for people with kidney failure: A case study.

BACKGROUND: Little is known about the usefulness of decision coaching for people with kidney failure facing decisions about end-of-life care. OBJECTIVES: To investigate experiences of people with kidney failure who received decision coaching for end-of-life care decisions. DESIGN: We conducted a prospective case study bound by time (September to December 2021), location (one nephrology department), and guided by the Ottawa Decision Support Framework. PARTICIPANTS: Adults with kidney failure facing end-of-life care decisions. MEASUREMENTS: A nurse trained in decision coaching screened for unmet decisional needs with the SURE test and provided decision coaching using the Ottawa Personal Decision Guide. Postcoaching, the participants were rescreened using the SURE test and interviewed to explore their experience with decision coaching. Change in SURE test findings was analysed descriptively and systematic text condensation was used for the analysis of interviews. Recorded decision coaching sessions underwent content analysis using the Decision Support Analysis Tool. RESULTS: Decision coaching was provided to four adults with kidney failure. Median pre-SURE test score was 2.5 (range 2-4) and posttest score was 3 (range 3-4), indicating a decrease in decisional needs. Participants described that decision coaching provided an overview of features of options to consider, identified remaining decisional needs for further discussion with relatives and health professionals and clarified next steps. Median Decision Support Analysis Tool score was 9 (range 8-9). CONCLUSIONS: After decision coaching, results suggest that the participants experienced fewer decisional needs and seemed clearer about the next steps in the decision making process.

Shared decision-making and planning end-of-life care for patients with end-stage kidney disease: a protocol for developing and testing a complex intervention.

BACKGROUND: Internationally, it has been stressed that advance care planning integrated within kidney services can lead to more patients being involved in decisions for end-of-life care. In Denmark, there is no systematic approach to advance care planning and end-of-life care interventions within kidney services. A shared decision-making intervention for planning end-of-life care may support more effective treatment management between patients with end-stage kidney disease, their relatives and the health professionals. The purpose of this research is to find evidence to design a shared decision-making intervention and test its acceptability to patients with end-stage kidney disease, their relatives, and health professionals in Danish kidney services. METHODS: This research project will be conducted from November 2020 to November 2023 and is structured according to the UK Medical Research Council framework for complex intervention design and evaluation research. The development phase research includes mixed method surveys. First, a systematic literature review synthesising primary empirical evidence of patient-involvement interventions for patients with end-stage kidney disease making end-of-life care decisions will be conducted. Second, interview methods will be carried out with patients with end-stage kidney disease, relatives, and health professionals to identify experiences of involvement in decision-making and decisional needs when planning end-of-life care. Findings will inform the co-design of the shared decision-making intervention using an iterative process with our multiple-stakeholder steering committee. A pilot test across five kidney units assessing if the shared decision-making intervention is acceptable and feasible to patients, relatives, and health professionals providing services to support delivery of care in kidney services. DISCUSSION: This research will provide evidence informing the content and design of a shared decision-making intervention supporting patient-professional planning of end-of-life care for patients with end-stage kidney disease, and assessing its acceptability and feasibility when integrated within Danish kidney units. This research is the first step to innovating the involvement of patients in end-of-life care planning with kidney professionals.

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to investigate and map existing empirical evidence on patient involvement interventions helping patients with end-stage kidney disease to make end-of-life care decisions about kidney services. INTRODUCTION: Patients with end-stage kidney disease have a high disease burden and mortality rate. Despite this, kidney services differ in how they offer and integrate end-of-life care, if it is offered at all. Some countries have established advance care planning protocols to encourage patient involvement when offering end-of-life care options as part of end-stage kidney disease care. However, there is a limited understanding of the components of patient involvement interventions designed to support patients with end-stage kidney disease making decisions about end-of-life care. INCLUSION CRITERIA: The review will consider studies on patient involvement interventions concerning end-of-life care decisions for patients with end-stage kidney disease. A broad definition of patient involvement interventions will be used. Studies on interventions that do not involve patients or relatives will be excluded. The review will focus on interventions applied to kidney health care and other services, such as community-based health care. METHODS: MEDLINE, Embase, Scopus, and CINAHL will be searched. The literature will be screened for inclusion by two independent reviewers. Data synthesis will be conducted through relational analysis investigating patient involvement interventions and relevant information in line with the review objective and questions. Data will be extracted and listed in the data extraction instruments, accompanied by a narrative summary describing how the results relate to the review objective.

Shared Decision Making in Early-Stage Non-small Cell Lung Cancer: A Systematic Review.

BACKGROUND: The United Kingdom National Institute for Health and Care Excellence guidelines recommend that patients and professionals make shared decisions between surgery and stereotactic ablative radiotherapy (SABR) when treating early-stage non-small cell lung cancer (NSCLC). Variation by center suggests treatment decisions may be disproportionately influenced by clinician judgment and treatment availability rather than by patient preference. This systematic review critically evaluates studies of patient and clinician preferences for treatment of early-stage NSCLC. METHODS: Primary empirical research up to April 30, 2020, was identified from searches of MEDLINE, Embase, PsycInfo, and Web of Science databases. Data extracted included study characteristics and methods, preferences for NSCLC treatment, and involvement in decision making and risk of bias using the Mixed Methods Appraisal Tool. Findings were synthesized using descriptive data and narrative synthesis. RESULTS: Included in the review were 23 studies, of which 18 measured patient preferences, 4 clinician preferences, and 1 both clinician and patient preferences. Patients and clinicians were both most likely to prefer a collaborative role in treatment decisions. Most patients did not recall there being a choice between surgery or SABR options and thus experienced minimal decisional conflict. CONCLUSIONS: For professionals to support patients in making informed, value-based decisions about NSCLC treatments, better quality evidence is needed of the clinical and quality of life trade-offs for both surgery and SABR.

How to engage patient partners in health service research: a scoping review protocol.

BACKGROUND: The patients' and the carers' roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. METHODS: A scoping review using a systematic process informed by Arksey and O'Malley's framework will be carried out across six electronic databases using the terms 'patient participation', 'community participation', 'research personnel', 'patient and public involvement' and 'patient partner'. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. DISCUSSION: To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.