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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., Patient Decision Aids (PtDA)) interventions increase informed and values-based decision-making between individuals and healthcare professionals (HCPs). We aimed to develop an intervention to facilitate PR SDM which was acceptable to individuals living with COPD and PR HCPs. METHODS: An iterative development process involving qualitative methods was adopted. Broad overarching frameworks included: complex intervention development framework, the multiple stakeholder decision making support model, and the Ottawa Decision Support Framework. Development included: assembling a steering group, outlining the scope for the PtDA, collating data to inform the PtDA design, prototype development, alpha testing with individuals with COPD (n = 4) and PR HCPs (n = 8), PtDA finalisation, and design and development of supporting components. This took nine months. RESULTS: The PtDA was revised six times before providing an acceptable, comprehensible, and usable format for all stakeholders. Supporting components (decision coaching training and a consultation prompt) were necessary to upskill PR HCPs in SDM and implement the intervention into the PR pathway. CONCLUSIONS: We have developed a three-component SDM intervention (a PtDA, decision coaching training for PR healthcare professionals, and a consultation prompt) to support individuals living with COPD make informed and values-based decision about PR together with their PR healthcare professional. Clear implementation strategies are outlined which should support its integration into the PR pathway.
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Toma de Decisiones Conjunta , Técnicas de Apoyo para la Decisión , Personal de Salud , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Enfermedad Pulmonar Obstructiva Crónica/rehabilitación , Masculino , Femenino , Participación del Paciente , Investigación Cualitativa , Persona de Mediana Edad , Anciano , Toma de DecisionesRESUMEN
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. This article describes research underpinning the development of a guide for kidney health professionals discussing end-of-life and advance care planning options with people with kidney failure and family members. Study Design: The study comprised 2 parts: an initial cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers followed by resource development with input from multiple stakeholders. Setting & Participants: Older adults with kidney failure and (bereaved) carers recruited from 2 renal units in the North of England and by online advertisements with national United Kingdom-based kidney patient charities. Resource development included input from co-applicants, independent advisory committee, patient and public involvement team, multidisciplinary health professionals and academics in the United Kingdom and Denmark. Analytical Approach: Thematic analysis was used to analyze the data. Results: Twenty-seven people were interviewed: older adults with kidney failure (n = 18), carers (n = 5), bereaved carers (n = 4). Five themes are described: the context within which end-of-life conversations take place, preferences for end-of-life treatment and care, family members' role and needs in supporting people with kidney failure at the end-of-life, expectations and experience of dialysis treatment, and beliefs and experiences of death and dying. Limitations: Participants were mainly White, British, and receiving hemodialysis. Conclusions: People with (lived) experience of kidney failure informed a guide which aims to build on health professionals existing skills and improve confidence having conversations about future treatment and care. Kidney teams have expressed interest implementing the guide in practice and within their broader communications training packages.
Delivering treatment pathways integrating 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 article describes how people with (lived) experience of kidney failure informed a guide to build on health professionals existing skills and improve confidence having conversations about future treatment and care. The study comprised 2 parts: cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers followed by resource development with input from coapplicants, an independent advisory committee, a patient and public involvement team, multidisciplinary health professionals, and academics.
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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. We developed a novel approach to automating real-time data collection using an electronic measurement system to address this. Examining usability will facilitate its optimization and wider implementation to inform interventions aimed at improving SDM. OBJECTIVE: This study examined the usability of an electronic real-time measurement system to monitor surgical patients' experience of SDM. We aimed to evaluate the metrics and indicators relevant to system effectiveness, system efficiency, and user satisfaction. METHODS: We performed a mixed methods usability evaluation using multiple participant cohorts. The measurement system was implemented in a large UK hospital to measure patients' experience of SDM electronically before surgery using 2 validated measures (CollaboRATE and SDM-Q-9). Quantitative data (collected between April 1 and December 31, 2021) provided measurement system metrics to assess system effectiveness and efficiency. We included adult patients booked for urgent and elective surgery across 7 specialties and excluded patients without the capacity to consent for medical procedures, those without access to an internet-enabled device, and those undergoing emergency or endoscopic procedures. Additional groups of service users (group 1: public members who had not engaged with the system; group 2: a subset of patients who completed the measurement system) completed user-testing sessions and semistructured interviews to assess system effectiveness and user satisfaction. We conducted quantitative data analysis using descriptive statistics and calculated the task completion rate and survey response rate (system effectiveness) as well as the task completion time, task efficiency, and relative efficiency (system efficiency). Qualitative thematic analysis identified indicators of and barriers to good usability (user satisfaction). RESULTS: A total of 2254 completed surveys were returned to the measurement system. A total of 25 service users (group 1: n=9; group 2: n=16) participated in user-testing sessions and interviews. The task completion rate was high (169/171, 98.8%) and the survey response rate was good (2254/5794, 38.9%). The median task completion time was 3 (IQR 2-13) minutes, suggesting good system efficiency and effectiveness. The qualitative findings emphasized good user satisfaction. The identified themes suggested that the measurement system is acceptable, easy to use, and easy to access. Service users identified potential barriers and solutions to acceptability and ease of access. CONCLUSIONS: A mixed methods evaluation of an electronic measurement system for automated, real-time monitoring of patients' experience of SDM showed that usability among patients was high. Future pilot work will optimize the system for wider implementation to ultimately inform intervention development to improve SDM. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2023-079155.
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Benchmarking , Proyectos de Investigación , Adulto , Humanos , Libros , Política de Salud , InternetRESUMEN
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.
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Enfermedad de la Neurona Motora , Humanos , Enfermedad de la Neurona Motora/genética , Enfermedad de la Neurona Motora/epidemiología , Encuestas y Cuestionarios , Inglaterra , Neurología/educación , Secuenciación Completa del Genoma , Asesoramiento Genético , Masculino , Medicina Estatal , Pruebas Genéticas , Femenino , Genómica/métodosRESUMEN
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.
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Esclerosis Amiotrófica Lateral , Enfermedad de la Neurona Motora , Humanos , Esclerosis Amiotrófica Lateral/genética , Enfermedad de la Neurona Motora/diagnóstico , Enfermedad de la Neurona Motora/genética , Pruebas Genéticas , Reino UnidoRESUMEN
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. The ALPACA Study aims to develop, pilot and evaluate a decision support intervention that uses real-time feedback of patients' experience of SDM to change patients' and healthcare professionals' decision-making processes before adult elective surgery and to improve patient and health service outcomes. METHODS AND ANALYSIS: This protocol outlines a mixed-methods study, involving diverse stakeholders (adult patients, healthcare professionals, members of the community) and three National Health Service (NHS) trusts in England. Detailed methods for the assessment of the feasibility, usability and stakeholder views of implementing a novel system to monitor the SDM process for surgery automatically and in real time are described. The study will measure the SDM process using validated instruments (CollaboRATE, SDM-Q-9, SHARED-Q10) and will conduct semi-structured interviews and focus groups to examine (1) the feasibility of automated data collection, (2) the usability of the novel system and (3) the views of diverse stakeholders to inform the use of the system to improve SDM. Future phases of this work will complete the development and evaluation of the intervention. ETHICS AND DISSEMINATION: Ethical approval was granted by the NHS Health Research Authority North West-Liverpool Central Research Ethics Committee (reference: 21/PR/0345). Approval was also granted by North Bristol NHS Trust to undertake quality improvement work (reference: Q80008) overseen by the Consent and SDM Programme Board and reporting to an Executive Assurance Committee. TRIAL REGISTRATION NUMBER: ISRCTN17951423; Pre-results.
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Camélidos del Nuevo Mundo , Toma de Decisiones , Adulto , Animales , Humanos , Medicina Estatal , Retroalimentación , Participación del PacienteRESUMEN
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. RESULTS: Specific challenges and solutions were identified across three broad areas. (1) Understanding decision making and implementation: necessitating multidisciplinary collaboration in the early stages and throughout; early stakeholder engagement to define the decision problem and ensure acceptability of PROs in prediction; understanding patient/clinician interpretation of PRO predictions and uncertainty to optimize prediction impact; striving for model integration into existing electronic health records; and early regulatory alignment. (2) Recognizing the limitations to PRO collection and their impact on prediction: incorporating validated, clinically important PROs to maximize model generalizability and clinical engagement; and minimizing missing PRO data (resulting from both structural digital exclusion and time-varying factors) to avoid exacerbating existing inequalities. (3) Statistical and modeling challenges: incorporating statistical methods to address missing data; ensuring predictive modeling recognizes complex causal relationships; and considering temporal and geographic recalibration so that model predictions reflect the relevant population. CONCLUSION: Developing and implementing PRO-based prediction models in cancer care requires extensive multidisciplinary working from the earliest stages, recognition of implementation challenges because of PRO collection and model presentation, and robust statistical methods to manage missing data, causality, and calibration. Prediction models incorporating PROs should be viewed as complex interventions, with their development and impact assessment carried out to reflect this.
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Neoplasias , Humanos , Pronóstico , Neoplasias/diagnóstico , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Atención a la Salud , Registros Electrónicos de SaludRESUMEN
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. Results: This schema represents the different types of decision aids that support PwKF and professional reasoning as they manage kidney disease individually and together; adjustments at micro, meso and macro levels supports integration in practice. Conclusion: Innovating services to meet clinical guidelines on enhancing shared decision making processes means enabling all stakeholders to use decision aids to meet their goals within kidney pathways at individual, service and organizational levels.
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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). We aimed to evaluate the impact of SDM interventions on patient decision-making (primary outcome) and downstream health-related outcomes (secondary outcome). DESIGN: We conducted a systematic review using the risk of bias (Cochrane ROB2, ROBINS-I) and certainty of evidence (Grading of Recommendations Assessment, Development and Evaluation) tools. DATA SOURCES: MEDLINE, EMBASE, PSYCHINFO, CINAHL, PEDRO, Cochrane Central Register of Controlled Trials, the International Clinical Trials Registry Platform Search Portal, ClinicalTrials.gov, PROSPERO, ISRCTN were search through to 11th April 2023. ELIGIBILITY CRITERIA: Trials evaluating SDM interventions in patients living with CRD using quantitative or mixed methods were included. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data, assessed risk of bias and certainty of evidence. A narrative synthesis, with reference to The Making Informed Decisions Individually and Together (MIND-IT) model, was undertaken. RESULTS: Eight studies (n=1596 (of 17 466 citations identified)) fulfilled the inclusion criteria.Five studies included components targeting the patient, healthcare professionals and consultation process (demonstrating adherence to the MIND-IT model). All studies reported their interventions improved patient decision-making and health-related outcomes. No outcome was reported consistently across studies. Four studies had high risk of bias, three had low quality of evidence. Intervention fidelity was reported in two studies. CONCLUSIONS: These findings suggest developing an SDM intervention including a patient decision aid, healthcare professional training, and a consultation prompt could support patient PR decisions, and health-related outcomes. Using a complex intervention development and evaluation research framework will likely lead to more robust research, and a greater understanding of service needs when integrating the intervention within practice. PROSPERO REGISTRATION NUMBER: CRD42020169897.
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Toma de Decisiones , Enfermedades Respiratorias , Humanos , Participación del Paciente , Toma de Decisiones Conjunta , Personal de Salud/educación , Enfermedades Respiratorias/terapiaRESUMEN
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. METHODS: Discrete choice experiment attributes were developed from literature reviews, interviews and focus groups. In a discrete choice experiment, participants were shown two hypothetical DMTs, then chose whether they preferred one of the DMTs or no treatment. A mixed logit model was estimated from responses and individual-level estimates of participants' preferences conditional on their discrete choice experiment choices calculated. Logit models were estimated with stated preferences predicting current real-world on-treatment status, DMT mode of administration and current DMT. RESULTS: A stated intrinsic preference for taking a DMT was correlated with currently taking a DMT, and stated preferences for mode of administration were correlated with the modes of administration of the DMTs participants were currently taking. Stated preferences for treatment effectiveness and adverse effects were not correlated with real-world behaviour. CONCLUSIONS: There was variation in which discrete choice experiment attributes correlated with participants' real-world DMT choices. This may indicate patient preferences for treatment efficacy/risk are not adequately taken account of in prescribing. Treatment guidelines must ensure they take into consideration patients' preferences and improve communication around treatment efficacy/risk.
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Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Esclerosis Múltiple Recurrente-Remitente , Esclerosis Múltiple , Humanos , Esclerosis Múltiple Recurrente-Remitente/tratamiento farmacológico , Resultado del Tratamiento , Toma de DecisionesRESUMEN
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. Methods: A prospective, mixed-method, three stage study involving: 1) co-development of the resource in collaboration with a multi-disciplinary group of key stakeholders including oncology and fertility healthcare professionals and patient partners (n=24), 2) alpha testing with a group of cancer patients who had faced a fertility preservation treatment decision in the past (n=11), and oncology and fertility healthcare professionals and stakeholders (n=14) and, 3) beta testing with women in routine care who had received a recent diagnosis of cancer and were facing a fertility preservation treatment decision (n=41) and their oncology and fertility healthcare professionals (n=3). Ten service users recruited from a closed Breast Cancer Now Facebook group and the support group Cancer and Fertility UK also provided feedback on CFM via an online survey. Results: A 60-page paper prototype of the Cancer, Fertility and Me patient decision aid was initially developed. Alpha testing of the resource found that overall, it was acceptable to cancer patients, healthcare professionals and key stakeholders and it was considered a useful resource to support fertility preservation treatment decision-making. However, the healthcare professionals felt that the length of the patient decision aid, and elements of its content may be a barrier to its use. Subsequently, the prototype was reduced to 40 pages. During beta testing of the shortened version in routine care, women who received the resource described its positive impact on their ability to make fertility preservation decisions and support them at a stressful time. However, practical difficulties emerged which impacted upon its wider dissemination in clinical practice and limited some elements of the evaluation planned. Discussion: Women receiving the decision aid within the cancer treatment pathway found it helped them engage with decisions about fertility preservation, and make better informed, values-based care plans with oncology and fertility teams. More work is needed to address access and implementation of this resource as part of routine oncology care pathways.
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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 and health professionals. This protocol describes the development and evaluation of a complex SDM intervention for patients living with COPD, who are referred for pulmonary rehabilitation, and their pulmonary rehabilitation health professional. Methods and analysis: We are developing a complex SDM intervention involving a patient decision aid (PtDA) and a decision coaching workshop. Prior to patient recruitment, pulmonary rehabilitation health professionals will attend the workshop. Upon referral to pulmonary rehabilitation, patients will receive the PtDA to support their decision-making prior to and during their pulmonary rehabilitation assessment with a health professional. The intervention will be evaluated in a one-arm exploratory study to investigate its feasibility and acceptability for patients and health professionals, with an integrated fidelity assessment. The primary outcome is recruitment feasibility, data collection feasibility and intervention fidelity. Secondary outcomes include routine pulmonary rehabilitation data, decisional conflict, patient activation, intervention attendance/attrition and patient and pulmonary rehabilitation health professional experience of the intervention. Quantitative outcomes will be evaluated using the most appropriate statistical test, dependent on the sample distribution. Qualitative outcomes will be evaluated using reflexive thematic analysis. Fidelity will be assessed using the Observer OPTION 5 scale. Conclusion: This intervention will provide structure for an informed and values-based decision-making consultation between a patient with COPD and a pulmonary rehabilitation health professional with the potential for optimising pulmonary rehabilitation decision-making.
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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 and improving MDT practice. This reviews aims to describe and appraise these tools, as well as consider their value to quality improvement. METHODS: Medline, EMBASE and PsycInfo were searched using pre-defined terms. The PRISMA model was followed throughout. Studies were included if they described the development of a relevant tool, or if an element of the methodology further informed tool quality assessment. To investigate efficacy, studies using a tool as a method of quality improvement in MDT practice were also included. Study quality was appraised using the COSMIN risk of bias checklist or the Newcastle-Ottawa scale, depending on study type. RESULTS: The search returned 7930 results. 18 studies were included. In total 7 tools were identified. Overall, methodological quality in tool development was adequate to very good for assessed aspects of validity and reliability. Clinician feedback was positive. In one study, the introduction of a discussion checklist improved MDT ability to reach a decision from 82.2 to 92.7%. Improvement was also noted in the quality of information presented and the quality of teamwork. CONCLUSIONS: Several tools for assessment and guidance of MDTs are available. Although limited, current evidence indicates sufficient rigour in their development and their potential for quality improvement. TRIAL REGISTRATION: PROSPERO ID: CRD42021234326 .
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Lista de Verificación , Comunicación Interdisciplinaria , Neoplasias/terapia , Grupo de Atención al Paciente , Calidad de la Atención de Salud/normas , Humanos , Oncología Médica/métodos , Reproducibilidad de los ResultadosRESUMEN
OBJECTIVE: To investigate whether decisions made by the multidisciplinary team (MDT) were implemented and review 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 were extracted and compared with implemented clinical management obtained from the electronic health record (EHR) to determine concordance. Cases were re-reviewed to understand reasons why planned management was not implemented. RESULTS: From 42 MDT meetings, 106 patients were identified. Twenty four patients were discussed at two MDTs and four patients were discussed three times. Of the 106 patients, 91 (85.8%) were treated as planned, seven (6.6%) declined planned management and opted for conservative management, four (3.8%) patients died before treatment, and four (3.8%) had alternative management for individual reasons. Of the patients discussed multiple times, 15 (53.6%) needed review by a consultant anaesthetist or additional investigations. CONCLUSION: This service evaluation found a similar proportion of cases as in existing oncology literature where the MDT decision was not implemented. However, the natural history of AAA brings nuance to this finding. Facilitating patient preference is an important problem that will require future study. This evaluation resulted in local improvements to the MDT process for AAA.
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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 of narratives in PtDAs, we conducted a narrative scoping review of the literature from January 2013 through June 2019 to identify relevant literature published since the last International Patient Decision Aid Standards (IPDAS) update in 2013. We considered research articles that examined the impact of narratives on relevant outcomes or described relevant theoretical mechanisms. RESULTS: The majority of the empirical work on narratives did not measure concepts that are typically found in the PtDA literature (e.g., decisional conflict). Yet, a few themes emerged from our review that can be applied to the PtDA context, including the impact of narratives on relevant outcomes (knowledge, behavior change, and psychological constructs), as well as several theoretical mechanisms about how and why narratives work that can be applied to the PtDA context. CONCLUSION: Based on this evidence update, we suggest that there may be situations when narratives could enhance the effectiveness of PtDAs. The recent theoretical work on narratives has underscored the fact that narratives are a multifaceted construct and should no longer be considered a binary option (include narratives or not). However, the bottom line is that the evidence does not support a recommendation for narratives to be a necessary component of PtDAs.
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Técnicas de Apoyo para la Decisión , Participación del Paciente , Toma de Decisiones , Humanos , NarraciónRESUMEN
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.
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Técnicas de Apoyo para la Decisión , Participación del Paciente , Toma de Decisiones , Personal de Salud , Humanos , Solución de ProblemasRESUMEN
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 inventory. Interviews allowed qualitative assessment. RESULTS: Patient-reported anxiety did not correlate with cardiovascular changes. Anaesthetic room interventions were not predictive of anxiety. Postoperative interviews identified five sources of anxiety, mostly related to preparation for surgery. Staff responses to anxiety were also highlighted. DISCUSSION: Patient-reported anxiety and its biological response are not correlated. Pre-induction interventions do not contribute to anxiety. Anxiety levels at induction are similar to or lower than earlier in the preoperative period. CONCLUSIONS: On induction of anaesthesia, patients have little control over their situation but are actively reassured and distracted by theatre staff. Our data suggest staff are good at this. More could still be done to reduce preoperative sources of anxiety.
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Anestesia , Ansiedad , Anestesia/efectos adversos , Ansiedad/etiología , Humanos , Dimensión del Dolor , Periodo PreoperatorioRESUMEN
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.
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Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Investigación Cualitativa , Derivación y ConsultaRESUMEN
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.