Hilary L Bekker

University of Leeds · School of Medicine - Leeds Institute of Health Sciences

Purpose: We aimed to explore key stakeholder perspectives on what types of measures are useful for assessing patient involvement interventions. A recent rapid review of measures used to evaluate the impact of patient involvement interventions within Danish healthcare, revealed there to be little consensus between studies. Further, there seemed to b...

Is there common ground in measuring patient involvement? Background: There is no gold standard measure of patient involvement in healthcare. Our rapid review of measures used to evaluate patient involvement interventions in Denmark identified 72 instruments; few assessed patient experiences of involvement directly. There was little consensus on how...

The growing older population with advanced chronic kidney disease (ACKD stages 4–5) poses a challenge for healthcare worldwide. The high prevalence of frailty and associated adverse health outcomes highlights concerns for management and interventions specific to this population. The aim was to objectively review the evidence relating to older peopl...

Purpose Patient-reported outcome measures, including satisfaction with treatment decisions, provide important information in addition to clinical outcomes, survival and decision-making in lung cancer surgery. We investigated associations between preoperative clinical and socio-demographic factors and patient-reported satisfaction 6 weeks after radi...

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 p...

Introduction: Shared decision making (SDM) is implemented in hospitals across Denmark as a method to increase patient involvement and person-centred care. The effectiveness of SDM can be evaluated using multiple outcomes and measurement tools. However, it is unclear how these measures align with stakeholders' understanding of patient involvement. A...

Choosing hypodontia treatment requires young people and parents to consider a large amount of information, identify what is important to them, and make trade-offs between options. This study aimed to examine young people and parents’ preferences for hypodontia treatment using discrete choice experiment (DCE). This was a cross-sectional survey of yo...

Aims For patients with advanced cancer, early access to palliative care can have numerous psychosocial and disease management benefits. However, it can be difficult for clinicians to initiate these initial conversations about palliative care. The aim of the present study was to beta test an intervention to facilitate timely conversations about pall...

Oral presentation 4.2) The complexity of measuring person-centred care and patient involvement interventions Background: In a changing world the patient's needs, preferences, wellbeing, and wider social context need to be addressed continuously. Patient involvement interventions aim to increase patient engagement with health care and health profess...

Background Despite the variety of pulmonary rehabilitation programmes for patients living with COPD, uptake remains low. To improve this, it is recommended that health professionals engage patients in informed decisions about pulmonary rehabilitation. Shared decision-making (SDM) facilitates informed and value-based decision-making between patients...

Background MDT discussion is the gold standard for cancer care in the UK. With the incidence of cancer on the rise, demand for MDT discussion is increasing. The need for efficiency, whilst maintaining high standards, is therefore clear. Paper-based MDT quality assessment tools and discussion checklists may represent a practical method of monitoring...

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. Des...

Objective To investigate whether decisions made by the multidisciplinary team (MDT) were implemented, as well as reviewing the MDT process to identify areas for improvement. Methods This was a retrospective service evaluation project. Consecutive cases of abdominal aortic aneurysm (AAA) from vascular surgery MDT meetings were reviewed. MDT outputs...

Background MDT discussion is the gold standard for cancer care in the UK. With the incidence of cancer on the rise, demand for MDT discussion is increasing. The need for efficiency, whilst maintaining high standards, is therefore clear. Paper-based MDT quality assessment tools and discussion checklists may represent a practical method of monitoring...

Background This article evaluates the evidence for the inclusion of patient narratives in patient decision aids (PtDAs). We define patient narratives as stories, testimonials, or anecdotes that provide illustrative examples of the experiences of others that are relevant to the decision at hand. Method To evaluate the evidence for the effectiveness...

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 researche...

People make numerous health-related choices each day: For example, deciding to brush one’s teeth or to eat well and healthy – or not to do these activities. To support complex decisions and subsequent behaviour change, both behaviour change interventions (BCIs) and patient decision aids (PtDAs) have been developed and evolved independently to suppo...

Introduction Reported outcomes for older people with advanced chronic kidney disease (CKD) often focus on survival and mortality and little attention is paid to symptom burden and health-related quality of life. Recognising frailty and providing interventions that may improve outcomes have been studied in the general population with a growing resea...

Objectives The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referre...

Background: There are now large cohorts of people with relapsing-remitting multiple sclerosis (pwRRMS) who have taken several Disease-Modifying Treatments (DMTs). Studies about switching DMTs mostly focus on clinical outcomes rather than patients' decision-making. Neurologists are now required to support decisions at various times during the relap...

Background: Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate...

Background: In early-stage Non-Small Cell Lung Cancer (NSCLC) patients, little is known about how to measure patient participation in Shared-Decision Making (SDM). We examined the psychometric properties and clinical acceptability of the Decision Self-Efficacy scale (DSE) in a cohort of patients undergoing to Stereotactic Ablative Radiotherapy (SA...

Aim To investigate patient anxiety at anaesthetic induction and whether this is affected by anaesthetic room interventions. Methods A mixed methods study was carried out: pre-induction interventions were directly observed. Patient anxiety was assessed quantitatively with cardiovascular changes, the visual analogue scale and the state-trait anxiety...

Background Relapsing–remitting multiple sclerosis (RRMS) is an incurable disease characterised by relapses (periods of function loss) followed by full or partial recovery, and potential permanent disability over time. Many disease-modifying treatments (DMTs) exist that help reduce relapses and slow disease progression. Most are contraindicated duri...

Objective Disease-Modifying Treatments (DMTs) have contributed to a new clinical landscape for people with relapsing-remitting multiple sclerosis (pwRRMS). A challenge for services is how to support DMT decisions with changing clinical evidence, and differing treatment goals. This article investigates how pwRRMS weigh up the pros and cons of DMTs b...

Background Written information supplements nurse‐led education about treatment options. It is unclear if this information enhances patients’ reasoning about conservative management (CM) and renal replacement therapy decisions. Aim This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Esta...

Background In early-stage Non-Small Cell Lung Cancer (NSCLC) patients, little is known about how to measure patient participation in Shared-Decision Making (SDM). We examined the psychometric properties and clinical acceptability of the Decision Self-Efficacy scale (DSE) in a cohort of patients undergoing to Stereotactic Ablative Radiotherapy (SABR...

Background In early-stage Non-Small Cell Lung Cancer (NSCLC) patients, little is known about how to measure patient participation in Shared-Decision Making (SDM). We examined the psychometric properties and clinical acceptability of the Decision Self-Efficacy scale (DSE) in a cohort of patients undergoing to Stereotactic Ablative Radiotherapy (SABR...

Objective To measure patient-reported impact of orthodontic treatment in terms of pre-treatment concerns, treatment experience and treatment outcome. Setting Four sites in Yorkshire, including two secondary care settings (Leeds Dental Institute and St Luke’s Hospital, Bradford) and two specialist orthodontic practices. Design Cross-sectional surv...

Background: We explored decisional conflict as measured with the 16-item Decisional Conflict Scale (DCS) and how it varies across clinical situations, decision types, and exposure to decision support interventions (DESIs). Methods: An exhaustive scoping review was conducted using backward citation searches and keyword searches. Eligible studies...

Background: The Decisional Conflict Scale (DCS) measures 5 dimensions of decision making (feeling: uncertain, uninformed, unclear about values, unsupported; ineffective decision making). We examined the use of the DCS over its initial 20 years (1995 to 2015). Methods: We conducted a scoping review with backward citation search in Google Analytic...

Objective: To determine the extent to which the current care pathway in hypodontia promotes shared decision-making (SDM). Design: Exploratory cross-sectional study using qualitative methods. Setting: Orthodontic department of two NHS teaching hospitals in Yorkshire. Participants: Young people aged 12-16 years with hypodontia of any severity...

Background: Risk of encapsulating peritoneal sclerosis (EPS) is strongly associated with the duration of peritoneal dialysis (PD), such that patients who have been on PD for some time may consider elective transfer to haemodialysis to mitigate the risk of EPS. There is a need to determine this risk to better inform clinical decision making, but pr...

Background To identify publicly available internet resources and assess their likelihood to support women making informed decisions about, and between, fertility preservation procedures before starting their cancer treatment. Methods A survey of publically available internet resources utilising an environmental scan method. Inclusion criteria were...

Background: Multiple Sclerosis (MS) is a chronic inflammatory demyelinating disorder of the central nervous system that mainly affects young adults. While there is no cure for MS, disease modifying treatments (DMTs) reduce the relapse rate and partial accrual of disability. More effective DMTs may have higher risks including life-threatening infect...

Aim: The aim of this study is to assess the reliability of the Strength and Difficulties Questionnaire (SDQ), including the impact subscale, when completed by school-age children in Oman. The SDQ is an essential tool for screening psychological and behavioural problems in school children but has only been partially tested in an Omani sample. Method...

Objective Our objective was to develop and test a discrete-choice experiment (DCE) survey to elicit adolescent and parent preferences for dental care for hypodontia (a developmental condition where one or more teeth fail to develop). Methods This was a mixed-methods study. Participants were adolescents (aged 12–16 years) with hypodontia and their...

Background: Preference experiments are used to understand how patients and stakeholders value aspects of health care. These methods are gaining popularity in dentistry, but quality and breadth of use have not been evaluated. Objectives: To describe multiattribute stated preference experiment use in dentistry through illustration and critique of...

Purpose To explain what patient decision aids are, why they help patients engage more effectively with healthcare, and how their use enables health professionals to meet clinical guidance on delivering shared decision making about treatment choices. People’s healthcare decisions are emotionally and cognitively demanding, involving trade-offs betwee...

When patients' kidney function deteriorates to chronic kidney disease stage 5, services offer patients a choice for the next phase of their care. Renal replacement therapies may not have survival benefits, and conservative management may have less treatment burden for older patients with associated comorbidities or frailty. Anna E Winterbottom et a...

Introduction For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of invo...

Aim: To assess the adequacy of patient information to support understanding and decision-making for people affected by hypodontia. Methods: 1) Questionnaire to understand the provision of patient information by dentists; 2) Systematic search to identify online open-access patient information; 3) Quality assessment of written patient information....

Background Pain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines. Objectives To develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this interve...

Background Patient decision aids (PDAs) are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. The International Patient Decision Aid Standards (IPDAS) Collaboration review papers and Cochrane systematic review of PDAs have found significant gaps in the reporting of evaluations of PDAs, in...

This Explanation and Elaboration (E&E) article expands on the 26 items in the Standards for UNiversal reporting of Decision Aid Evaluations (SUNDAE) guidelines. The E&E provides a rationale for each item and includes examples for how each item has been reported in published papers evaluating patient decision aids. The Explanation and Elaboration fo...

Introduction: Identification and appraisal of the outcome measures that have been used to evaluate hypodontia treatment and deliver services are essential for improving care. A lack of alignment between outcomes and patient values can limit the scope for patient-centered care. Our objectives were to identify and appraise the outcomes selected to e...

Women diagnosed with cancer and facing potentially sterilising cancer treatment have to make time-pressured decisions regarding fertility preservation with specialist fertility services whilst undergoing treatment of their cancer with oncology services. Oncologists identify a need for resources enabling them to support women’s fertility preservatio...

Introduction: Women diagnosed with cancer and facing potentially sterilising cancer treatment have to make time-pressured decisions regarding fertility preservation with specialist fertility services while undergoing treatment of their cancer with oncology services. Oncologists identify a need for resources enabling them to support women's fertili...

The process of choosing dialysis modality for patients is complex and requires input from the expert renal team. Although it is commonplace for nephrologists to recommend dialysis modalities to patients, this might not always lead to the patient receiving treatment which they regard as most suitable. Nephrologists should consider whether it is appr...

Objectives: To develop and evaluate a child-centred patient decision aid for young people, and their parents, supporting shared decision making about fixed orthodontic appliance treatment with dental health professionals, namely the Fixed Appliance Decision Aid (FADA). Methods: The studies were undertaken in a UK teaching dental hospital orthodo...

Background: Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems but research identifying the...

Purpose: To assess the impact of implementation activities on decision aid use by people making dialysis decisions. The Dialysis Decision Aid booklet was launched by a UK kidney disease charity when the research assessing its acceptability to patients with established kidney disease and predialysis services ended. Method(s): observational study tra...

Historic and the ever-increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. As healthcare beliefs of minority groups may follow their religion and country of origin, inevitable conflict can arise with decision-making at the end of life. The principles of truth telling and p...

Background: Research governance requires patients give informed consent to participate in clinical trials. However, there are concerns that consent information may not support patient participation decisions. This study investigates the utility of consent information in supporting women's trial participation decisions when receiving treatment for...

Objectives: Web-based interventions enable organisations to deliver personalised individually tailored brief feedback to individuals without the need of a third party. Web-based interventions are effective in reducing alcohol consumption among university students. There is a paucity of evidence to indicate those who access web-based personalised f...

Background Shared decision making is considered an important aspect of chronic disease management. We explored the feasibility of routinely measuring kidney patients' involvement in making decisions about renal replacement therapy (RRT) in National Health Service settings. Methods We disseminated a 17-item paper questionnaire on involvement in dec...