Reporting of Clinical Adverse Events Scale: a measure of doctor and nurse attitudes to adverse event reporting

Objective: To develop a validated measure of professionals' attitudes towards clinical adverse event reporting (CAER). Design: Cross-sectional survey with follow-up. Participants: 201 doctors and nurse/nurse-midwives undergoing postqualification training in Leeds, York and Hull Universities in 2003. Materials: A questionnaire which comprised 73 items extracted from interviews with professionals; a second, statistically reduced version of this questionnaire. Results: The analysis supported a 25-item questionnaire comprising five factors: blame as a consequence of reporting (six items); criteria for reporting (six items); colleagues' expectations (six items); perceived benefits of reporting events (five items); and clarity of reporting procedures (two items). The resulting questionnaire, the Reporting of Clinical Adverse Effects Scale (RoCAES), had satisfactory internal consistency (Cronbach's alpha = 0.83) and external reliability (Spearman's correlation = 0.65). The construct validity hypothesis -doctors have less positive attitudes towards CAER than nurses -was supported (t = 5.495; p < 0.0001). Conclusion: Initial development of an evidence-based, psychometrically rigorous measure of attitudes towards CAER has been reported. Following additional testing, RoCAES may be used to systematically elicit professionals' views about, and inform interventions to improve, reporting behaviour

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. MND Association resources were most commonly used in information sharing, though we highlight distinctions between neurology and genetics centers. No respondents identified comprehensive training around MND genetic testing. We conclude with practice implications and priorities for the development of resources and training

A 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. There were 245 respondents to the survey (160 neurology clinicians and 85 genetic clinicians). Neurology clinicians reported multiple, overlapping barriers to offering pwMND GS. Lack of time to discuss GS in clinic and lack of training in genetics were reported. Neurology clinicians scored significantly less well on self-rated genomic knowledge and genetic counselling skills than genetic clinicians. The majority of neurology clinicians reported that they do not have adequate educational or patient information resources to support GS discussions. We identify low levels of genomic knowledge and skills in the neurology workforce. This may impede access to GS and precision medicine for pwMND

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

Patient Acceptability of the Yorkshire Dialysis Decision Aid (YoDDA) Booklet: A Prospective Non-Randomized Comparison Study Across 6 Predialysis Services

Background: Patients are satisfied with their kidney care but want more support in making dialysis choices. Predialysis leaflets vary across services, with few being sufficient to enable patients’ informed decision making. We describe the acceptability of a patient decision aid and feasibility of evaluating its effectiveness within usual predialysis practice. Methods: Prospective non-randomized comparison design, Usual Care or Usual Care Plus Yorkshire Dialysis Decision Aid Booklet (+YoDDA), in 6 referral centers (Yorkshire-Humber, UK) for patients with sustained deterioration of kidney function. Consenting (C) patients completed questionnaires after predialysis consultation (T1), and 6 weeks later (T2). Measures assessed YoDDA’s utility to support patients’ decisions and integration within usual care. Results: Usual Care (n = 105) and +YoDDA (n = 84) participant characteristics were similar: male (62%), white (94%), age (mean = 62.6; standard deviation [SD] 14.4), kidney disease severity (glomerular filtration rate [eGFR] mean = 14.7; SD 3.7); decisional conflict was <25; choice-preference for home versus hospital dialysis approximately 50:50. Patients valued receiving YoDDA, reading it on their own (96%), and sharing it with family (72%). +YoDDA participants had higher scores for understanding kidney disease, reasoning about options, feeling in control, sharing their decision with family. Study engagement varied by center (estimated range 14 – 49%; mean 45%); participants varied in completion of decision quality measures. Conclusions: Receiving YoDDA as part of predialysis education was valued and useful to patients with worsening kidney disease. Integrating YoDDA actively within predialysis programs will meet clinical guidelines and patient need to support dialysis decision making in the context of patients’ lifestyle

Integrating behaviour change interventions and patient decision aids: How to accomplish synergistic effects?

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 support people in health-related decision making. In this paper, we critically review BCIs and PtDAs, examine their similarities and differences, and identify potential for integration of expertise to increase the benefits for people engaging with healthcare and health behaviours. The two approaches appear to mainly differ in terms of their (1) goals and foci, (2) theoretical basis, (3) development frameworks, (4) active ingredients and (5) effect evaluation. To facilitate the integration of scientific insights from these two fields, we recommend to (1) bring both fields together and promote interprofessional discussions, (2) train (health) professionals to recognise strengths of both approaches, (3) investigate the synergy of the two fields, (4) be prepared for and try to mitigate a culture shock when the fields start to interact. Knowledge generated by researching PtDAs could be used to facilitate decisional processes that enable patients to choose goals that are in line with their values and preferences, while insights from researching BCIs could be used to facilitate engagement with, and implementation of those goals. This integration could allow researchers and intervention providers to increase the benefits for people engaging with healthcare and health behaviours. (c) 2021 Elsevier B.V. All rights reserved

Making choices without deliberating [Response to Bekker]

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