Health service provider views on measuring patient involvement in healthcare: an interview study with researchers, clinicians, service managers, and policymakers.

Background: There are several strategies used to assess involvement in their healthcare across service providers. However, there is no consensus on the most appropriate measurement tool to use when evaluating patient involvement initiatives. This qualitative study aimed to explore the perspectives of stakeholders from micro, meso, and macro levels within the Danish healthcare system on measuring patient involvement in their healthcare.

Measuring healthcare professionals' perceptions of their ability to adopt shared decision making: Translation and psychometric evaluation of the Danish version of the IcanSDM questionnaire.

Background: Shared  decision making in healthcare is a fundamental right for patients. Healthcare professionals' perception of their own abilities to enable shared decision making is crucial for implementing shared decision making within service. IcanSDM (I can shared decision making) is a brief measure to investigate healthcare professionals' perception of shared decision making approaches to their practices.

Feasibility and acceptability of the ShareD dEciSIon making for patients with kidney failuRE to improve end-of-life care intervention: A pilot multicentre randomised controlled trial.

Background: Kidney failure is associated with a high disease burden and high mortality rates. National and international guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but implementation of these conversations within kidney services varies. We developed the DESIRE (ShareD dEciSIon-making for patients with kidney failuRE to improve end-of-life care) intervention from our studies investigating multiple decision maker needs and experiences of end-of-life care in kidney services.

Development of a Resource for Health Professionals to Raise Advance Care Planning Topics During Kidney Care Consultations: A Multiple User-Centered Design.

Rationale & Objective: Planning and delivering treatment pathways that integrate end-of-life care, frailty assessment, and enhanced supportive care is a service priority. Despite this, people with kidney failure are less likely to have an advance care plan and receive hospice and palliative care compared with other chronic illness populations. This is linked to health professionals feeling unskilled initiating conversations around future treatment and care options.

A shared decision-making intervention between health care professionals and individuals undergoing Pulmonary Rehabilitation: An iterative development process with qualitative methods.

Background: Pulmonary Rehabilitation (PR) services typically offer programmes to support individuals living with COPD make rehabilitation choices that best meet their needs, however, uptake remains low. Shared Decision-Making (SDM; e.g.

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.

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.

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.

Usability of an Automated System for Real-Time Monitoring of Shared Decision-Making for Surgery: Mixed Methods Evaluation.

Background: Improving shared decision-making (SDM) for patients has become a health policy priority in many countries. Achieving high-quality SDM is particularly important for approximately 313 million surgical treatment decisions patients make globally every year. Large-scale monitoring of surgical patients' experience of SDM in real time is needed to identify the failings of SDM before surgery is performed.

Survey of service needs to embed genome sequencing for motor neuron disease in neurology in the English National Health Service.

All people with motor neuron disease (pwMND) in England are eligible for genome sequencing (GS), with panel-based testing. With the advent of genetically targeted MND treatments, and increasing demand for GS, it is important that clinicians have the knowledge and skills to support pwMND in making informed decisions around GS. We undertook an online survey of clinical genomic knowledge and genetic counselling skills in English clinicians who see pwMND.

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

Unlabelled: 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.

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.

Real-time monitoring and feedback to improve shared decision-making for surgery (the ALPACA Study): protocol for a mixed-methods study to inform co-development of an inclusive intervention.

Introduction: High-quality shared decision-making (SDM) is a priority of health services, but only achieved in a minority of surgical consultations. Improving SDM for surgical patients may lead to more effective care and moderate the impact of treatment consequences. There is a need to establish effective ways to achieve sustained and large-scale improvements in SDM for all patients whatever their background.

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.

A report of resources used by clinicians in the UK to support motor neuron disease genomic testing.

Genetic testing is a key decision-making point for people with motor neuron disease (MND); to establish eligibility for clinical trials, better understand the cause of their condition, and confirm the potential risk to relatives, who may be able to access predictive testing. Given the wide-reaching implications of MND genetic and predictive testing, it is essential that families are given adequate information, and that staff are provided with appropriate training. In this report we overview the information resources available to people with MND and family members around genetic testing, and the educational and training resources available to staff, based on information obtained through a freedom of information request to UK-based NHS Trusts.

Fixing the Leaky Pipe: How to Improve the Uptake of Patient-Reported Outcomes-Based Prognostic and Predictive Models in Cancer Clinical Practice.

Purpose: This discussion paper outlines challenges and proposes solutions for successfully implementing prediction models that incorporate patient-reported outcomes (PROs) in cancer practice.

Methods: We organized a full-day multidisciplinary meeting of people with expertise in cancer care delivery, PRO collection, PRO use in prediction modeling, computing, implementation, and decision science. The discussions presented here focused on identifying challenges to the development, implementation and use of prediction models incorporating PROs, and suggesting possible solutions.

Decision aids to assist patients and professionals in choosing the right treatment for kidney failure.

Background: Kidney services vary in the way they involve people with kidney failure (PwKF) in treatment decisions as management needs change. We discuss how decision-science applications support proactively PwKF to make informed decisions between treatment options with kidney professionals.

Methods: A conceptual review of findings about decision making and use of decision aids in kidney services, synthesized with reference to: the Making Informed Decisions-Individually and Together (MIND-IT) multiple stakeholder decision makers framework; and the Medical Research Council-Complex Intervention Development and Evaluation research framework.

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.

Systematic review of shared decision-making interventions for people living with chronic respiratory diseases.

Objective: Shared decision-making (SDM) supports patients to make informed and value-based decisions about their care. We are developing an intervention to enable healthcare professionals to support patients' pulmonary rehabilitation (PR) decision-making. To identify intervention components we needed to evaluate others carried out in chronic respiratory diseases (CRDs).

Decision Making About Disease-Modifying Treatments for Relapsing-Remitting Multiple Sclerosis: Stated Preferences and Real-World Choices.

Background: People with relapsing-remitting multiple sclerosis can benefit from disease-modifying treatments (DMTs). Several DMTs are available that vary in their efficacy, side-effect profile and mode of administration.

Objective: We aimed to measure the preferences of people with relapsing-remitting multiple sclerosis for DMTs using a discrete choice experiment and to assess which stated preference attributes correlate with the attributes of the DMTs they take in the real world.

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.

Measures used to assess interventions for increasing patient involvement in Danish healthcare setting: a rapid review.

Objective: To identify measures used within Denmark evaluating any type of intervention designed to facilitate patient involvement in healthcare.

Design: Environmental scan employing rapid review methods.

Data Sources: MEDLINE, PsycInfo and CINAHL were searched from 6-9 April 2021 from database inception up to the date of the search.

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.

Healthcare professional experiences of making surgical oncology decisions and delivering COVID-19 safe care: a qualitative study.

Background: The COVID-19 pandemic was declared a public health emergency in March 2020. The British National Health Service (NHS) redirected medical attention towards prioritising COVID-19-positive patients in favour of less urgent care affecting cancer service provision. This study aims to explore experiences of healthcare professionals (HCPs) and investigate the impact of COVID-19 on decision-making in surgical oncology.

Cancer, Fertility and Me: Developing and Testing a Novel Fertility Preservation Patient Decision Aid to Support Women at Risk of Losing Their Fertility Because of Cancer Treatment.

Background: Women with a new cancer diagnosis face complex decisions about interventions aiming to preserve their fertility. Decision aids are more effective in supporting decision making than traditional information provision. We describe the development and field testing of a novel patient decision aid designed to support women to make fertility preservation treatment decisions around cancer diagnosis.