Publications by authors named "Margaret Ogden"

17 Publications

  • Page 1 of 1

Integrating Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation: the Breathe Plus feasibility trial protocol.

ERJ Open Res 2021 Jan 29;7(1). Epub 2021 Mar 29.

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.

One in five people with COPD also lives with frailty. People living with both COPD and frailty are at increased risk of poorer health and outcomes, and face challenges to completing pulmonary rehabilitation. Integrated approaches that are adapted to the additional context of frailty are required. The aim of the present study is to determine the feasibility of conducting a randomised controlled trial of an integrated Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation. This is a multicentre, mixed-methods, assessor-blinded, randomised, parallel group, controlled feasibility trial ("Breathe Plus"; ISRCTN13051922). We aim to recruit 60 people aged ≥50 with both COPD and frailty referred for pulmonary rehabilitation. Participants will be randomised 1:1 to receive usual pulmonary rehabilitation, or pulmonary rehabilitation with an additional Comprehensive Geriatric Assessment. Outcomes (physical, psycho-social and service use) will be measured at baseline, 90 days and 180 days. We will also collect service and trial process data, and conduct qualitative interviews with a sub-group of participants and staff. We will undertake descriptive analysis of quantitative feasibility outcomes (recruitment, retention, missing data, blinding, contamination, fidelity), and framework analysis of qualitative feasibility outcomes (intervention acceptability and theory, outcome acceptability). Recommendations on progression to a full trial will comprise integration of quantitative and qualitative data, with input from relevant stakeholders. This study has been approved by a UK Research Ethics Committee (ref.: 19/LO/1402). This protocol describes the first study testing the feasibility of integrating a Comprehensive Geriatric Assessment alongside pulmonary rehabilitation, and testing this intervention within a mixed-methods randomised controlled trial.
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http://dx.doi.org/10.1183/23120541.00717-2020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005693PMC
January 2021

Why trials lose participants: A multitrial investigation of participants' perspectives using the theoretical domains framework.

J Clin Epidemiol 2021 Mar 13;137:1-13. Epub 2021 Mar 13.

Health Services Research Unit, Health Sciences Building, Foresterhill, Aberdeen AB25 2ZD, UK. Electronic address:

Objectives: To use the Theoretical Domains Framework (TDF) to identify barriers and enablers to participant retention in trials requiring questionnaire return and/or attendance at follow-up clinics.

Study Design And Setting: We invited participants (n = 607) from five pragmatic effectiveness trials, who missed at least one follow-up time point (by not returning a questionnaire and/or not attending a clinic visit), to take part in semistructured telephone interviews. The TDF informed both data collection and analysis. To establish what barriers and enablers most likely influence the target behavior the domain relevance threshold was set at >75% of participants mentioning the domain.

Results: Sixteen participants (out of 25 showing interest) were interviewed. Overall, seven theoretical domains were identified as both barriers and enablers to the target behaviors of attending clinic appointments and returning postal questionnaires. Barriers frequently reported in relation to both target behaviours stemmed from participants' knowledge, beliefs about their capabilities and the consequences of performing (or not performing) the behavior. Two domains were identified as salient for questionnaire return only: goals; and memory, attention and decision-making. Emotion was identified as relevant for clinic attendance only.

Conclusion: This is the first study informed by behavioural science to explore trial participants' accounts of trial retention. Findings will serve as a guiding framework when designing trials to limit barriers and enhance enablers of retention within clinical trials.
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http://dx.doi.org/10.1016/j.jclinepi.2021.03.007DOI Listing
March 2021

Introducing alcohol as a drug in medicine reviews with pharmacists: Findings from a co-design workshop with patients.

Drug Alcohol Rev 2021 Mar 1. Epub 2021 Mar 1.

Department of Health Sciences, University of York, York, UK.

Introduction: Alcohol poses a range of potential problems to people taking medications, but health professionals are usually not comfortable talking about drinking with patients. The Medicines and Alcohol Consultation aims to increase the capacity of pharmacists to conduct person-centred reviews in which alcohol is regarded as another drug to be discussed alongside medications. This paper explores sensitivities in discussing alcohol and views on the legitimacy of the Medicines and Alcohol Consultation intervention concept at a pharmacy-user intervention co-design workshop.

Methods: A co-design workshop was held with 14 people recruited from UK community pharmacies who regularly drank alcohol and took medications for long-term conditions. This formed one element of a broader, iterative, intervention co-production process. Workshop discussions were audio-recorded and analysed thematically.

Results: The basic intervention concept resonated well, though not entirely unproblematically. Participants were interested in receiving information on how medications interact with alcohol and how this might affect their own conditions, with which to make their own informed choices. Linking alcohol use to medicines gave legitimacy to pharmacists to raise alcohol in medicines reviews. Sensitivity in talking about alcohol was linked to vulnerability to negative judgement.

Discussion And Conclusions: Changing the framing of alcohol in medicines reviews, away from being regarded as a 'lifestyle issue' to being considered a drug directly linked to medicines use, safety and effectiveness, was welcomed by participants in this study.
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http://dx.doi.org/10.1111/dar.13255DOI Listing
March 2021

Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK.

BMJ Open 2021 02 22;11(2):e049486. Epub 2021 Feb 22.

Faculty of Social Sciences, University of Stirling, Stirling, UK

Introduction: Palliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called 'Palliative Care Needs Rounds' (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.

Methods And Analysis: This implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4-6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents' quality of death and care home staff capability of adopting a palliative approach.

Ethics And Dissemination: Frenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.

Registration Details: Registration details: ISRCTN15863801.
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http://dx.doi.org/10.1136/bmjopen-2021-049486DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7903098PMC
February 2021

Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study.

Age Ageing 2021 01;50(1):233-241

Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, UK.

Background: Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these.

Methods: A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted.

Results: There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care.

Conclusions: Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.
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http://dx.doi.org/10.1093/ageing/afaa210DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7793597PMC
January 2021

A pilot cluster randomised trial of the medicines and alcohol consultation (MAC): an intervention to discuss alcohol use in community pharmacy medicine review services.

BMC Health Serv Res 2020 Oct 12;20(1):943. Epub 2020 Oct 12.

Department of Health Sciences, University of York, York, UK.

Background: Alcohol interventions are important to the developing public health role of community pharmacies. The Medicines and Alcohol Consultation (MAC) is a new intervention, co-produced with community pharmacists (CPs) and patients, which involves a CP practice development programme designed to integrate discussion of alcohol within existing NHS medicine review services. We conducted a pilot trial of the MAC and its delivery to investigate all study procedures to inform progression to a definitive trial.

Methods: This cluster pilot RCT was conducted in 10 community pharmacies in Yorkshire, UK, with a CP from each who regularly conducted Medicine Use Review (MUR) and New Medicine Service (NMS) consultations. Randomisation was conducted using a secure remote randomisation service. Intervention CPs (n = 5) were trained to deliver the MAC in MUR/NMS consultations. Control CPs (n = 5) provided these services as usual. Consecutive MUR/NMS patients were asked by CPs to participate, screened for eligibility (consumption of alcohol at least twice per week), and baseline data collected for those eligible. A two-month follow-up telephone interview was conducted. Blinding of CPs was not possible, but patients were blinded to the alcohol focus of the trial. Primary outcomes were total weekly UK units (8 g of ethanol per unit) of alcohol consumption in the week prior to follow-up, and confidence in medications management. Trial procedures were assessed by recruitment, attrition, and follow-up rates.

Results: 260 patients were approached by CPs to take part in the trial, 68% (n = 178) were assessed for eligibility and 30% (n = 54) of these patients were eligible. Almost all eligible patients (n = 51; 94%) consented to participate, of whom 92% (n = 47) were followed-up at 2 months; alcohol consumption was lower in the intervention arm and confidence in medication management reduced slightly for both groups. Exploration of recall issues at follow-up showed a high level of agreement between a two-item quantity/frequency measure and 7-day guided recall of alcohol consumption.

Conclusions: The pilot trial demonstrates the feasibility of implementing the MAC in community pharmacy and trial recruitment and data collection procedures. However, decommissioning of MURs means that it is not possible to conduct a definitive trial of the intervention in this service.

Trial Registration: ISRCTN57447996.
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http://dx.doi.org/10.1186/s12913-020-05797-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7552554PMC
October 2020

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

Palliat Med 2021 Jan 11;35(1):151-160. Epub 2020 Sep 11.

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.

Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness.

Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement.

Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers.

Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK.

Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects.

Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
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http://dx.doi.org/10.1177/0269216320956819DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797607PMC
January 2021

'The opportunity to have their say'? Identifying mechanisms of community engagement in local alcohol decision-making.

Int J Drug Policy 2020 11 27;85:102909. Epub 2020 Aug 27.

Department of Health Services Research & Policy, London School of Hygiene & Tropical Medicine, 15-17 Tavistock Place, LondonWC1H 9SH, United Kingdom.

Background: Engaging the community in decisions-making is recognised as important for improving public health, and is recommended in global alcohol strategies, and in national policies on controlling alcohol availability. Yet there is little understanding of how to engage communities to influence decision-making to help reduce alcohol-related harms. We sought to identify and understand mechanisms of community engagement in decision-making concerning the local alcohol environment in England.

Methods: We conducted case studies in three local government areas in England in 2018, purposively selected for examples of community engagement in decisions affecting the local alcohol environment. We conducted 20 semi-structured interviews with residents, workers, local politicians and local government practitioners, and analysed documents linked to engagement and alcohol decision-making.

Results: Four rationales for engaging the community in decision-making affecting the alcohol environment were identified: i) as part of statutory decision-making processes; ii) to develop new policies; iii) as representation on committees; and iv) occurring through relationship building. Many of the examples related to alcohol licensing processes, but also local economy and community safety decision-making. The impact of community inputs on decisions was often not clear, but there were a few instances of engagement influencing the process and outcome of decision-making relating to the alcohol environment.

Conclusions: While influencing statutory licensing decision-making is challenging, community experiences of alcohol-related harms can be valuable 'evidence' to support new licensing policies. Informal relationship-building between communities and local government is also beneficial for sharing information about alcohol-related harms and to facilitate future engagement. However, care must be taken to balance the different interests among diverse community actors relating to the local alcohol environment, and extra support is needed for those with least capacity to engage but who face more burden of alcohol-related harms, to avoid compounding existing inequalities.
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http://dx.doi.org/10.1016/j.drugpo.2020.102909DOI Listing
November 2020

Experiences of Pulmonary Rehabilitation in People Living with Chronic Obstructive Pulmonary Disease and Frailty. A Qualitative Interview Study.

Ann Am Thorac Soc 2020 10;17(10):1213-1221

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, and.

People living with both chronic obstructive pulmonary disease (COPD) and frailty have high potential to benefit from pulmonary rehabilitation but face challenges completing programs. However, research to understand ways to optimize participation in this group is lacking. To explore the experiences, needs, and preferences of people with COPD and frailty referred for outpatient pulmonary rehabilitation. Semistructured interviews with people with COPD and physical frailty, purposively sampled by age, living status, level of frailty, and completion of pulmonary rehabilitation. Thematic analysis with a critical realist perspective was used, involving relevant stakeholders with clinical, academic, and lived experience for interpretive rigor. Nineteen people with COPD and frailty were interviewed, with a median age of 78 years (range, 58-88). Nine did not complete their pulmonary rehabilitation program. Four themes were identified: striving to adapt to multidimensional loss, tensions of balancing support with independence, pulmonary rehabilitation as a challenge worth facing, and overcoming unpredictable disruptions to participation. Participants described constantly adapting to their changing health and resulting multidimensional losses (e.g., functional abilities, relationships, confidence). This involved traversing between independence and seeking support, set against a mismatch between their needs and what support is available. People with COPD and frailty can be highly motivated to participate in pulmonary rehabilitation, despite the physical and mental demands it entails, and report a range of benefits. Yet in the context of changeable health, they must often overcome multiple unpredictable disruptions to completing rehabilitation programs. Participant determination and flexibility of services can facilitate ongoing attendance, but for some, these unpredictable disruptions erode their motivation to attend. People with COPD and frailty experience accumulating, multidimensional loss. This group are motivated to complete pulmonary rehabilitation but often require additional support and flexibility owing to fluctuating and unpredictable health. Person-centered approaches should be considered to minimize disruptive health events and support pulmonary rehabilitation participation and completion. Service adaptations could allow more flexibility to meet the changing needs of this group and enable communication around how pulmonary rehabilitation might align with their priorities.
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http://dx.doi.org/10.1513/AnnalsATS.201910-800OCDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7640624PMC
October 2020

Producing co-production: Reflections on the development of a complex intervention.

Health Expect 2020 06 31;23(3):659-669. Epub 2020 Mar 31.

University of York, York, UK.

Background: Patient and public involvement and co-production are widely used, but nevertheless contested concepts in applied health research. There is much confusion about what they are, how they might be undertaken and how they relate to each other. There are distinct challenges and particular gaps in public involvement in alcohol research, especially when the study focus is on health matters other than alcohol dependence.

Objective: To explore how patient and public involvement and co-production have been interpreted and applied within a multi-disciplinary research programme in the development of a complex intervention on alcohol and medicine use in community pharmacies.

Design: The paper presents the authors' critical reflection on a grounded example of how public involvement concepts have been translated into practice in the intervention development phase of a publicly funded research programme, noting its impact on the programme to date.

Discussion: Co-production adds another layer of complexity in the development of a complex intervention. The research planning requirements for publicly funded research circumscribe the possibilities for co-production, including impacting on the possibility of stability and continuity over time.
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http://dx.doi.org/10.1111/hex.13046DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7321726PMC
June 2020

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence.

Soc Psychiatry Psychiatr Epidemiol 2020 Jan 2;55(1):1-14. Epub 2019 Nov 2.

Division of Psychiatry, University College London, 6th Floor Maple House, Tottenham Court Road, London, W1T 7NF, UK.

Purpose: To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home.

Methods: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base.

Results: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model.

Conclusions: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home.

Trial Registration: PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).
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http://dx.doi.org/10.1007/s00127-019-01784-wDOI Listing
January 2020

Identifying opportunities for engaging the 'community' in local alcohol decision-making: A literature review and synthesis.

Int J Drug Policy 2019 12 18;74:193-204. Epub 2019 Oct 18.

Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, 15-17 Tavistock Place, London WC1H 9SH, UK. Electronic address:

Introduction: Engaging communities in actions to reduce alcohol harms has been identified as an international priority. While there exist recommendations for community engagement within alcohol licensing legislation, there is limited understanding of how to involve communities in local decision-making to reduce harms from the alcohol environment.

Methods: A scoping literature review was conducted on community engagement in local government decision-making with relevance to the alcohol environment. Academic and grey literature databases were searched between April and June 2018 to identify examples of community engagement in local government in the UK, published since 2000. Texts were excluded if they did not describe in detail the mechanisms or rationale for community engagement. Information was extracted and synthesised through a narrative approach.

Results: 3030 texts were identified through the searches, and 30 texts were included in the final review. Only one text described community engagement in alcohol decision-making (licensing); other local government sectors included planning, regeneration and community safety. Four rationales for community engagement emerged: statutory consultation processes; non-statutory engagement; as part of broader participatory initiatives; and community-led activism. While not all texts reported outcomes, a few described direct community influence on decisions. Broader outcomes included improved relationships between community groups and local government. However, lack of influence over decisions was also common, with multiple barriers to effective engagement identified.

Conclusion: The lack of published examples of community engagement in local alcohol decision-making relevant to the UK suggests little priority has been placed on sharing learning about supporting engagement in this area. Taking a place-shaping perspective, useful lessons can be drawn from other areas of local government with relevance for the alcohol environment. Barriers to engagement must be considered carefully, particularly around how communities are defined, and how different interests toward the local alcohol environment are represented, or not.
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http://dx.doi.org/10.1016/j.drugpo.2019.09.020DOI Listing
December 2019

Influence of doctor-patient conversations on behaviours of patients presenting to primary care with new or persistent symptoms: a video observation study.

BMJ Qual Saf 2020 03 20;29(3):198-208. Epub 2019 Jul 20.

Department of Applied Health Research, University College London, London, UK.

Background: Most cancers are diagnosed following contact with primary care. Patients diagnosed with cancer often see their doctor multiple times with potentially relevant symptoms before being referred to see a specialist, suggesting missed opportunities during doctor-patient conversations.

Objective: To understand doctor-patient communication around the significance of persistent or new presenting problems and its potential impact on timely cancer diagnosis.

Research Design: Qualitative thematic analysis based on video recordings of doctor-patient consultations in primary care and follow-up interviews with patients and doctors. 80 video observations, 20 patient interviews and 7 doctor interviews across 7 general practices in England.

Results: We found that timeliness of diagnosis may be adversely affected if doctors and patients do not come to an agreement about the presenting problem's significance. 'Disagreements' may involve misaligned cognitive factors such as differences in medical knowledge between doctor and patient or misaligned emotional factors such as patients' unexpressed fear of diagnostic procedures. Interviews suggested that conversations where the difference in views is either not recognised or stays unresolved may lead to unhelpful patient behaviour after the consultation (eg, non-attendance at specialist appointments), creating potential for diagnostic delay and patient harm.

Conclusions: Our findings highlight how doctor-patient consultations can impact timely diagnosis when patients present with persistent or new problems. Misalignments were common and could go unnoticed, leaving gaps for potential to cause patient harm. These findings have implications for timely diagnosis of cancer and other serious disease because they highlight the complexity and fluidity of the consultation and the subsequent impact on the diagnostic process.
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http://dx.doi.org/10.1136/bmjqs-2019-009485DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7057803PMC
March 2020

Planning and enabling meaningful patient and public involvement in dementia research.

Curr Opin Psychiatry 2019 11;32(6):557-562

Division of Psychiatry, University College London.

Purpose Of Review: To summarize the latest evidence on patient and public involvement (PPI) in dementia research. To identify methodologies used to deliver and evaluate co-production, potential barriers to involvement, and effective strategies to enable meaningful involvement of PPI representatives in dementia research.

Recent Findings: PPI expertise in dementia research has been utilized to increase the acceptability of new interventions to end users and to interpret research findings from a PPI perspective. Practical adaptations to materials and meetings, and building relationships and trust were important facilitators for engagement. PPI has included caregivers, people living with dementia (PLWD) or both, with few studies involving the public or professionals. Engaging PLWD and hard-to-reach groups in PPI is challenging, with most current PPI representatives recruited from dementia organisations. Few studies have assessed the impact of PPI on study outcomes.

Summary: In this relatively new field, methods that allow meaningful engagement are being iteratively developed. Greater community and patient engagement will be a prerequisite for increasing diversity of PPI, to ensure voices of a broader range of stakeholders are heard. Documenting and publicizing the impact of this work and engaging existing PPI representatives to support PPI recruitment could help with this.
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http://dx.doi.org/10.1097/YCO.0000000000000548DOI Listing
November 2019

Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation.

Chron Respir Dis 2019 Jan-Dec;16:1479973118816448

1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.
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http://dx.doi.org/10.1177/1479973118816448DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313262PMC
August 2020

Systematic Techniques to Enhance rEtention in Randomised controlled trials: the STEER study protocol.

Trials 2018 Mar 27;19(1):197. Epub 2018 Mar 27.

School of Health Sciences, City, University of London, Northampton Square, London, EC1V 0HB, UK.

Background: Non-retention of participants seriously affects the credibility of clinical trial results and significantly reduces the potential of a trial to influence clinical practice. Non-retention can be defined as instances where participants leave the study prematurely. Examples include withdrawal of consent and loss to follow-up and thus outcome data cannot be obtained. The majority of existing interventions targeting retention fail to describe any theoretical basis for the observed improvement, or lack of improvement. Moreover, most of these interventions lack involvement of participants in their conception and/or design, raising questions about their relevance and acceptability. Many of the causes of non-retention involve people performing a behaviour (e.g. not returning a questionnaire). Behaviour change is difficult, and the importance of a strong theoretical basis for interventions that aim to change behaviour is increasingly recognised. This research aims to develop and pilot theoretically informed, participant-centred, evidence-based behaviour change interventions to improve retention in trials.

Methods: This research will generate data through semi-structured interviews on stakeholders' perspectives of the reasons for trial non-retention. It will identify perceived barriers and enablers to trial retention using the Theoretical Domains Framework. The intervention development work will involve identification of behaviour change techniques, using recognised methodology, and co-production of retention interventions through discussion groups with end-users. An evaluation of intervention acceptability and feasibility will be conducted in focus groups. Finally, a ready-to-use evaluation framework to deploy in Studies Within A Trial as well as an explanatory retention framework will be developed for identifying and tackling modifiable issues to improve trial retention.

Discussion: We believe this to be one of the first studies to apply a theoretical lens to the development of interventions to improve trial retention that have been informed by, and are embedded within, participants' experiential accounts. By developing and identifying priority interventions this study will support efforts to reduce research waste.
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http://dx.doi.org/10.1186/s13063-018-2572-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869766PMC
March 2018

Pediatric sialendoscopy indications and outcomes.

Curr Opin Otolaryngol Head Neck Surg 2016 Dec;24(6):529-535

aDepartment of Otolaryngology, Head and Neck Surgery, Washington University School of Medicine in St. Louis, St. Louis, Missouri bDepartment of Otolaryngology, Head and Neck Surgery, University of California, San Francisco, California, USA.

Purpose Of Review: Chronic sialadenitis can affect patients of all age ranges and typically presents as recurrent or chronic painful swelling of the salivary glands. In children, the most common cause of sialadenitis is juvenile recurrent parotitis. Salivary stones, or sialolithiasis, are a much less common cause. Historically, for patients with chronic sialadenitis who failed conservative management, salivary gland removal was the standard treatment option. Recently, however, sialendoscopy has emerged as an effective gland-preserving procedure for sialadenitis evaluation and treatment in adults and children. The aim of this review is to discuss pediatric sialadenitis evaluation and treatment, including sialendoscopy indications, technique, and outcomes.

Recent Findings: Sialendoscopy is a well tolerated and effective treatment for sialadenitis Sialendoscopy and salivary duct irrigation have been shown to improve frequency and severity of sialadenitis episodes in patients with juvenile recurrent parotitis. Salivary stones are managed successfully with endoscopic and combined endoscopic-assisted open approaches. Minimally invasive approaches with sialendoscopy have improved the ability to preserve salivary glands in patients with recurrent sialadenitis.

Summary: Sialendoscopy is a well tolerated and effective procedure for recurrent sialadenitis in children.
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http://dx.doi.org/10.1097/MOO.0000000000000314DOI Listing
December 2016