‘Nobody knows me better than me’: the development and pilot-testing of a patient-targeted complex intervention to prepare patients to participate in shared decision-making

Clinicians are ‘medical knowledge experts’ who can use their training, their experience, and evidence based medicine to diagnose and determine healthcare options available to patients, but patients are ‘personal preference experts’. Shared decision-making (SDM) depends on the combination of the different clinician and patient expertise, but to date efforts to increase SDM have largely not addressed how to enable patients to contribute their expertise to the process. The work in this thesis describes the development and pilot-testing of a theory-based intervention, which aims to prepare patients to participate in SDM. Development and pilot-testing was guided by the MRC’s framework for developing complex interventions. A systematic review revealed patient-reported barriers and facilitators to participating in SDM (key barriers included knowledge and perceived power imbalance) and a literature review found that existing interventions do not sufficiently address patient-reported barriers; thus there was scope to develop on more comprehensive theory-based intervention. The Behaviour Change Wheel guide was used to develop a theory-based intervention: an 8-page booklet entitled ‘Your Health, Your Choice’. Pre-testing with lay users, clinicians and organisational representatives revealed positive responses to the booklet’s key messages and design. Preliminary pilot-testing in a breast care setting showed evidence of high reach, dose and usage, and potential for the intervention to change patients attitudes towards the patient role in consultations (i.e. should patients be involved in SDM). However, the booklet had less impact on patients’ perceptions of whether clinicians want patients to become more involved (i.e. would patients be able to become involved.) Overall, preliminary findings suggest that the intervention could be a useful tool for preparing patients for SDM and for changing patients’ attitudes towards patient involvement. However, preparation for SDM must be followed by enablement by willing and skilled clinicians, and delivered within a supportive organisation

Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions

Objectives Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation. Methods Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised. Results Searches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement. Conclusion The highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making. Practice Implications Complex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant

Implementing shared decision making in UK : Progress 2017–2022

Peer reviewedPublisher PD

Effectiveness and safety of asynchronous telemedicine consultations in general practice: systematic review

Background There is a focus on increasing asynchronous telemedicine use, which allows medical data to be transmitted, stored, and interpreted later, but limited evidence of the quality of care it allows in general practice hinders this. Aim Investigate uses and effectiveness of asynchronous telemedicine in general practice according to the domains of healthcare quality and describe how the COVID-19 pandemic changed its use. Design & setting Systematic review in general practice. Method A systematic search carried out across four databases using terms related to general practice, asynchronous telemedicine, uses and effectiveness, and supported by citation searching. Followed by screening according to pre-defined criteria, data extraction and critical appraisal. Narrative synthesis guided by the six domains of healthcare quality and exploring differences in use before and following the COVID-19 pandemic. Results Searches yielded 6,864 reports; 27 reports from 23 studies were included. Asynchronous telemedicine is used by a range of staff and patients across many countries. Safety and equity are poorly reported but there were no major safety concerns. Evidence from other domains of healthcare quality show effectiveness in making diagnoses, prescribing medications, replacing other consultations, providing timely care and increased convenience for patients. Efficiency is impacted by negative effects on workflow, through poor implementation and patient non-adherence, limiting usability and requiring new administrative approaches from healthcare staff. Asynchronous telemedicine use increased rapidly from March 2020, following the COVID-19 pandemic outbreak. Conclusions Asynchronous telemedicine provides quality care for patients but is limited by reports of increased workload and inefficient workflow compared to face-to-face consultations. Limits of evidence include heterogeneity and small-scale studies. Further research into cost effectiveness, equity, safety, and sustained implementation will influence future policy and practice

Do published patient decision aids for end-of-life care address patients' decision making needs? A systematic review and critical appraisal

BACKGROUND: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice. AIMS AND DESIGN: This systematic review aimed to (a) identify the range of patients' decision-making needs and (b) assess the extent to which patient decision aids address these needs. DATA SOURCES: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990-January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed 'addressable'. RESULTS: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 'addressable' needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate. CONCLUSION: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life

What adolescents living with long-term conditions say about being involved in decision-making about their healthcare: A systematic review and narrative synthesis of preferences and experiences

Objective To understand the preferences and experiences of adolescents (age 10–19) with long-term conditions (LTCs) towards involvement in discussions and decisions regarding management of their condition. Methods A systematic review and narrative synthesis of mixed-methods, quantitative and qualitative and research was performed. Six databases were searched from inception to March 2017. The quality of the articles was assessed, and relevant data were extracted and coded thematically. Results The search yielded 27 articles which met the inclusion criteria. Decision-making involvement preferences and experiences were reported from the adolescents’ perspectives. Adolescents often report that they do not have any choice of treatment options. Variability in preferences and experiences were found within and between individuals. Mismatches between preferences and experiences are common, and often with negative emotional consequences. Discussion Adolescent preferences for involvement in the decision-making process are situational and individualistic. Healthcare professionals can encourage involvement by ensuring that adolescents are informed of treatment options, and aware of the value of their contribution. Future research should explore adolescent perceived barriers and facilitators to SDM. Practical implications Interventions are needed to effectively train HCPs in the delivery of shared decision-making, and to support the participation of adolescents with LTCs in shared decision-making

"I'd like to have more of a say because it's my body?: Adolescents' perceptions around barriers and facilitators to shared decision-making

PURPOSE: Adolescents living with long-term conditions (LTCs) often feel as though they are left out of discussions and decisions with healthcare professionals, which can give them the impression that their views are not important. Research around decision-making during clinical encounters often fails to represent adolescents' perspectives. This study explores adolescents' perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in shared decision-making (SDM). METHODS: Nineteen adolescents (aged 13-19 years) with LTCs were recruited from endocrinology, rheumatology, neurology, and nephrology clinics. Participatory qualitative interviews were conducted using life grids and pie charts, and transcripts were analyzed thematically. RESULTS: Four overarching themes and nine sub-themes were identified which describe barriers and facilitators around SDM. Adolescents need to feel, as though their involvement is supported by parents and healthcare professionals, that their contribution to the decision-making process is important and will yield a positive outcome. Adolescents often feel it is their right to be involved in decisions that affect them but also feel as though the adults' contributions to the decisions are considered more valuable. Adolescents need to feel capable of being involved, in terms of being able to understand and process information about the available options and ask appropriate questions. CONCLUSIONS: This work highlights a number of ways SDM can be facilitated between healthcare practitioners and adolescents with LTCs. Identifying the needs of adolescents with LTCs is necessary for optimizing the SDM process and to support them during healthcare consultation

Implementing Shared Decision Making in the NHS: Lessons from the MAGIC Programme

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