General practitioners' and nurses' experiences of using computerised decision support in screening for diabetic foot disease:implementing Scottish Clinical Information - Diabetes Care in routine clinical practice

<strong>Objective</strong> The Scottish Care Information - Diabetes Collaboration (SCI-DC) developed a computer- based information system to create a shared electronic record for use by all involved in the care of patients with diabetes mellitus. The objectives of this study were to understand primary care practitioners' views towards screening for diabetic foot disease and their experience of the SCI-DC system. <strong>Method</strong> We conducted an exploratory study using qualitativemethods. Semi-structured interviews were audiotape-recorded, transcribed and subjected to thematic analysis. Seven practice nurses and six general practitioners (GPs) with special responsibility for diabetes care inNHS Lothian participated. <strong>Results</strong> Primary care clinicians reported good systems in place to screen for diabetes-related complications and to refer their patients to specialist care. Foot ulceration was rarely observed; other diabetesrelated conditions were seen as a higher priority. Most had heard of the SCI-DC foot assessment tool, but its failure to integrate with other primary care information technology (IT) systems meant it was not used in these general practices. <strong>Conclusions</strong> Adoption of the SCI-DC foot assessment tool in primary care is not perceived as clinically necessary. Although information recorded by specialist services on SCI-DC is helpful, important structural barriers to its implementation mean the potential benefits associated with its use are unlikely to be realised; greater engagement with primary care priorities for diabetes management is needed to assist its successful implementation and adoption

Decision making in prenatal testing

Introduction: One of the main objectives of prenatal diagnosis programmes is to ensure women make informed decisions about testing. As few studies have operationalised informed decision making, it is unclear whether or not this objective has been attained. However, evidence suggests that (a) insufficient information is provided to enable informed and autonomous decision making, and (b) women's knowledge of testing is often incomplete. It is unlikely, therefore, that all women make fully informed decisions. Aims: To describe the conditions enabling informed decision making; to operationalise and assess the informed decision making process; to evaluate the efficacy of decision analysis to facilitate informed decision making; to describe the factors associated with prenatal diagnosis decisions. Sample: Data from 128 prenatal diagnosis information giving consultations between a health professional and women receiving a screen positive triple test result were included for analysis. Methods: Theoretical and integrative reviews summarising prior empirical research; observational designs assessing the decision making process; a randomised control trial design evaluating the decision analysis intervention. The following materials were piloted: a checklist of information provided; a coding frame of information utilised; a consent form; a questionnaire completed at two time points. Results: Insufficient information about Down's syndrome and termination was provided by the health professional to enable informed decision making. As many women employed a ‘screening out’ strategy to limit the information for assimilation, not all women made fully informed decisions. In the RCT (n = 106), 17 women chose no further testing. Compared with women receiving routine information, those allocated to the decision analysis consultation made more informed decisions, experienced less decisional conflict, were less falsely reassured and had longer consultations. Perceived social norm, expected-utility values and anxiety predicted women’s test decisions. Discussion: Decision analysis consultations were associated with more informed decisions than routine care. However, additional empirical research is required to ascertain what aspects of the decision analytic technique were associated with the facilitation of informed decision making. Recommended changes to routine clinical practice and women’s role in the consultation will be dependent on these subsequent findings

Framing Options as Choice or Opportunity

Objective. Health professionals must enable patients to make informed decisions about health care choices through unbiased presentation of all options. This study examined whether presenting the decision as "opportunity" rather than "choice" biased individuals' preferences in the context of trial participation for cancer treatment. Methods. Self-selecting healthy women (N = 124) were randomly assigned to the following decision frames: opportunity to take part in the trial (opt-in), opportunity to be removed from the trial (opt-out), and choice to have standard treatment or take part in the trial (choice). The computer-based task required women to make a hypothetical choice about a real-world cancer treatment trial. The software presented the framed scenario, recorded initial preference, presented comprehensive and balanced information, traced participants' use of information during decision making, and recorded final decision. A posttask paper questionnaire assessed perceived risk, attitudes, subjective norm, perceived behavioral control, and satisfaction with decision. Results. Framing influenced women's immediate preferences. Opportunity frames, whether opt-in or opt-out, introduced a bias as they discouraged women from choosing standard treatment. Using the choice frame avoided this bias. The opt-out opportunity frame also affected women's perceived social norm; women felt that others endorsed the trial option. The framing bias was not present once participants had had the opportunity to view detailed information on the options within a patient decision aid format. There were no group differences in information acquisition and final decisions. Sixteen percent changed their initial preference after receiving full information. Conclusions. A "choice" frame, where all treatment options are explicit, is less likely to bias preferences. Presentation of full information in parallel, option-by-attribute format is likely to "de-bias" the decision frame. Tailoring of information to initial preferences would be ill-advised as preferences may change following detailed information

Randomised cluster trial to support informed parental decision-making for the MMR vaccine

Background In the UK public concern about the safety of the combined measles, mumps and rubella [MMR] vaccine continues to impact on MMR coverage. Whilst the sharp decline in uptake has begun to level out, first and second dose uptake rates remain short of that required for population immunity. Furthermore, international research consistently shows that some parents lack confidence in making a decision about MMR vaccination for their children. Together, this work suggests that effective interventions are required to support parents to make informed decisions about MMR. This trial assessed the impact of a parent-centred, multi-component intervention (balanced information, group discussion, coaching exercise) on informed parental decision-making for MMR. Methods This was a two arm, cluster randomised trial. One hundred and forty two UK parents of children eligible for MMR vaccination were recruited from six primary healthcare centres and six childcare organisations. The intervention arm received an MMR information leaflet and participated in the intervention (parent meeting). The control arm received the leaflet only. The primary outcome was decisional conflict. Secondary outcomes were actual and intended MMR choice, knowledge, attitude, concern and necessity beliefs about MMR and anxiety. Results Decisional conflict decreased for both arms to a level where an 'effective' MMR decision could be made one-week (effect estimate = -0.54, p < 0.001) and three-months (effect estimate = -0.60, p < 0.001) post-intervention. There was no significant difference between arms (effect estimate = 0.07, p = 0.215). Heightened decisional conflict was evident for parents making the MMR decision for their first child (effect estimate = -0.25, p = 0.003), who were concerned (effect estimate = 0.07, p < 0.001), had less positive attitudes (effect estimate = -0.20, p < 0.001) yet stronger intentions (effect estimate = 0.09, p = 0.006). Significantly more parents in the intervention arm reported vaccinating their child (93% versus 73%, p = 0.04). Conclusions Whilst both the leaflet and the parent meeting reduced parents' decisional conflict, the parent meeting appeared to enable parents to act upon their decision leading to vaccination uptake

Patient and professional experiences of palliative care referral discussions from cancer services : a qualitative interview study

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 referred to palliative care. Transcripts were analysed using framework analysis. Results Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process

Development and evaluation of a patient decision aid for young people and parents considering fixed orthodontic appliances

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 orthodontic department in 2013-2014. The development phase involved an interview study with: (a) 10 patients (12-16 years old), and their parents, receiving orthodontic care to investigate treatment decision making and inform the content of the FADA and (b) 23 stakeholders critiquing the draft decision aid's content, structure and utility. The evaluation phase employed a pre-/post-test study design, with 30 patients (12-16 years old) and 30 parents. Outcomes included the Decisional Conflict Scale; measures of orthodontic treatment expectations and knowledge. RESULTS: Qualitative analysis identified two informational needs: effectiveness of treatment on orthodontic outcomes and treatment consequences for patients' lives. Quantitative analysis found decisional conflict reduced in both patients (mean difference -12.3, SD 15.3, 95% CI 6.6-17.9; p < 0.001) and parents (mean difference - 8.6, SD 16.6, 95% CI 2.5-14.8; p = 0.002); knowledge about duration and frequency of orthodontic treatment increased; expectations about care were unchanged. CONCLUSIONS: Using the FADA may enable dental professionals to support patients and their parents, decisions about fixed appliance treatments more effectively, ensuring young people's preferences are integrated into care planning

Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids

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 patient decision aids (PtDAs) developed to support patient–professional shared decision-making between dialysis and conservative management treatment pathways. Methods: We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. Results: PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name ‘conservative management’. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. Conclusions: PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK : a study protocol

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 involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. Methods and analysis: This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. Ethics and dissemination: Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups

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

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