Publications by authors named "Morag Farquhar"

74 Publications

Integrating Home-Based Exercise Training with a Hospital at Home Service for Patients Hospitalised with Acute Exacerbations of COPD: Developing the Model Using Accelerated Experience-Based Co-Design.

Int J Chron Obstruct Pulmon Dis 2021 19;16:1035-1049. Epub 2021 Apr 19.

School of Health Sciences, University of East Anglia, Norwich, UK.

Background: Hospital at home (HaH) schemes allow early discharge of patients hospitalised with an acute exacerbation of chronic obstructive pulmonary disease (AECOPD). Traditional outpatient pulmonary rehabilitation (PR) following an AECOPD has an established evidence-base, but there are issues with low referral, uptake and completion. One commonly cited barrier to PR post-hospitalisation relates to poor accessibility. To address this, the aim of this project was to enrol service users (patients with COPD and informal carers) and healthcare professionals to co-design a model of care that integrates home-based exercise training within a HaH scheme for patients discharged from hospital following AECOPD.

Methods: This accelerated experience-based co-design project included three audio-recorded stakeholder feedback events, using key "touchpoints" from previous qualitative interviews and a recent systematic review. Audio-recordings were inductively analysed using directed content analysis. An integrated model of care was then developed and finalised through two co-design groups, with the decision-making process facilitated by the tables of changes approach.

Results: Seven patients with COPD, two informal carers and nine healthcare professionals (from an existing outpatient PR service and HaH scheme) participated in the stakeholder feedback events. Four key themes were identified: 1) individualisation, 2) progression and transition, 3) continuity between services, and 4) communication between stakeholders. Two patients with COPD, one informal carer and three healthcare professionals participated in the first joint co-design group, with five healthcare professionals attending a second co-design group. These achieved a consensus on the integrated model of care. The agreed model comprised face-to-face supervised, individually tailored home-based exercise training one to three times a week, delivered during HaH scheme visits where possible by a healthcare professional competent to provide both home-based exercise training and usual HaH care.

Conclusion: An integrated model of care has been co-designed by patients with COPD, informal carers and healthcare professionals to address low uptake and completion of PR following AECOPD. The co-designed model of care has now been integrated within a well-established HaH scheme.
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http://dx.doi.org/10.2147/COPD.S293048DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8064617PMC
April 2021

Communicating uncertainty: contrasting the communication experiences of patients with advanced COPD and incurable lung cancer.

Fam Pract 2021 Apr 19. Epub 2021 Apr 19.

Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

Background: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes.

Objective: This study sought to identify factors that impact communication and support and recommend ways to improve patients' understanding of living with life-threatening illness.

Methods: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010-12.

Results: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians.

Conclusions: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the 'breaking bad news' conversation that oncologists are highly trained to deliver.
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http://dx.doi.org/10.1093/fampra/cmab024DOI Listing
April 2021

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

Face and content validity of the Carer Support Needs Assessment Tool (CSNAT), and feasibility of the CSNAT intervention, for carers of patients with chronic obstructive pulmonary disease.

Chronic Illn 2021 Mar 24:1742395321999433. Epub 2021 Mar 24.

School of Health Sciences, University of East Anglia, Norwich Research Park, Norwich, UK.

Objectives: Informal carers of patients with Chronic Obstructive Pulmonary Disease (COPD) have unmet support needs. Evidence relating to carers' support needs in chronic conditions informed version 3 of the Carer Support Needs Assessment Tool (CSNAT) which forms part of an intervention to identify and address carer support needs. Aim of study: to establish the face and content validity of CSNAT v3 for use with COPD carers and explore their views on delivery of the CSNAT Intervention in practice.

Methods: Focus groups conducted September-October 2019 in non-clinical settings recruited eleven COPD carers (two to six participants per group). COPD patients ( = 2) attended one group to facilitate carer attendance, the impact of which is discussed. Most participating carers were female ( = 10); carers' ages ranged 52-79 years.

Results: CSNAT v3 was easy to understand and complete, and all 15 domains were considered relevant and appropriate, suggesting good face and content validity. The demeanour, relational skills, and knowledge of the CSNAT facilitator appeared more important to carers than being a certain practitioner type.

Discussion: COPD carers considered the CSNAT Intervention an acceptable way of identifying and responding to their needs. The intervention could potentially be delivered through a range of services.
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http://dx.doi.org/10.1177/1742395321999433DOI Listing
March 2021

'I'm fine!': Assertions of lack of support need among patients with chronic obstructive pulmonary disease: A mixed-methods study.

Chronic Illn 2021 Mar 15:17423953211000386. Epub 2021 Mar 15.

Department of Public Health and Primary Care, Forvie Site, Cambridge Biomedical Campus, Cambridge, UK.

Objectives: To understand how people with Chronic Obstructive Pulmonary Disease (COPD) disavow their support needs and the impact on care.

Methods: Two stage mixed-method design. Stage 1 involved sub-analyses of data from a mixed-method population-based longitudinal study exploring the needs of patients with advanced COPD. Using adapted criteria from mental health research, we identified 21 patients who disavowed their needs from the 235 patient cohort. Qualitative interview transcripts and self-report measures were analysed to compare these patients with the remaining cohort. In stage 2 focus groups (n = 2) with primary healthcare practitioners (n = 9) explored the implications of Stage 1 findings.

Results: Patients who disavowed their support needs described non-compliance with symptom management and avoidance of future care planning (qualitative data). Analysis of self-report measures of mental and physical health found this group reported fewer needs than the remaining sample yet wanted more GP contact. The link between risk factors and healthcare professional involvement present in the rest of the sample was missing for these patients. Focus group data suggested practitioners found these patients challenging.

Discussion: This study identified patients with COPD who disavow their support needs, but who also desire more GP contact. GPs report finding these patients challenging to engage.
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http://dx.doi.org/10.1177/17423953211000386DOI Listing
March 2021

COPD discharge bundle and pulmonary rehabilitation referral and uptake following hospitalisation for acute exacerbation of COPD.

Thorax 2021 Mar 2. Epub 2021 Mar 2.

Harefield Respiratory Research Group, Royal Brompton & Harefield Hospitals, Guy's and St.Thomas' NHS Foundation Trust, London, UK.

Pulmonary rehabilitation (PR) following hospitalisations for acute exacerbation of COPD (AECOPD) is associated with improved exercise capacity and quality of life, and reduced readmissions. However, referral for, and uptake of, post-hospitalisation PR are low. In this prospective cohort study of 291 consecutive hospitalisations for AECOPD, COPD discharge bundles delivered by PR practitioners compared with non-PR practitioners were associated with increased PR referral (60% vs 12%, p<0.001; adjusted OR: 14.46, 95% CI: 5.28 to 39.57) and uptake (40% vs 32%, p=0.001; adjusted OR: 8.60, 95% CI: 2.51 to 29.50). Closer integration between hospital and PR services may increase post-hospitalisation PR referral and uptake.
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http://dx.doi.org/10.1136/thoraxjnl-2020-215464DOI Listing
March 2021

Therapeutic thoracentesis symptoms and activity: a qualitative study.

BMJ Support Palliat Care 2021 Jan 8. Epub 2021 Jan 8.

Respiratory Medicine, Norfolk and Norwich University Hospitals NHS Foundation Trust, Colney Lane, Norwich, UK

Introduction: Malignant pleural effusions (MPEs) commonly occur in patients with advanced cancer. Drainage of fluid is used to relieve symptoms and improve quality of life.

Objective: To improve our understanding of how therapeutic aspiration affects symptoms and activities in patients with MPE.

Methods: Patients presenting to the Pleural Clinic at Norfolk and Norwich University Hospital with a confirmed or suspected MPE participated in up to three semistructured interviews during their diagnostic/therapeutic pathway. Interviews were analysed using framework analysis by two researchers independently.

Results: Sixteen patients participated. Symptoms reported before drainage included breathlessness, cough, chest pain, fatigue and anorexia. Symptoms affected their activities, including walking, bending over and socialisation. Patients described anxiety about the underlying diagnosis and fear of over-reliance on others. Expectations of drainage outcome varied, with some hoping for a cure and others hoping for any improvement. After drainage, breathlessness, chest pain and cough improved in some patients. They reported feeling and sleeping better, but fatigue and poor appetite remained. Participants were more active after aspiration, but the duration of improvement was a few days only. Despite this, patients still felt the procedure worthwhile.

Conclusion: Overall health and respiratory symptoms improved following drainage, but constitutional symptoms did not improve. This may be because constitutional symptoms are caused by the underlying cancer. This study suggests that clinicians should consider a range of symptoms, rather than just breathlessness, in planning outcomes for clinical trials. These results are important to inform patients about the potential benefits and duration of symptom improvement after therapeutic aspiration.
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http://dx.doi.org/10.1136/bmjspcare-2020-002584DOI Listing
January 2021

Implementation of a complex intervention to improve care for patients whose situations are clinically uncertain in hospital settings: A multi-method study using normalisation process theory.

PLoS One 2020 16;15(9):e0239181. Epub 2020 Sep 16.

Cicely Saunders Institute, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, United Kingdom.

Purpose: To examine the use of Normalisation Process Theory (NPT) to establish if, and in what ways, the AMBER care bundle can be successfully normalised into acute hospital practice, and to identify necessary modifications to optimise its implementation.

Method: Multi-method process evaluation embedded within a mixed-method feasibility cluster randomised controlled trial in two district general hospitals in England. Data were collected using (i) focus groups with health professionals (HPs), (ii) semi-structured interviews with patients and/or carers, (iii) non-participant observations of multi-disciplinary team meetings and (iv) patient clinical note review. Thematic analysis and descriptive statistics, with interpretation guided by NPT components (coherence; cognitive participation; collective action; reflexive monitoring). Data triangulated across sources.

Results: Two focus groups (26 HPs), nine non-participant observations, 12 interviews (two patients, 10 relatives), 29 clinical note reviews were conducted. While coherence was evident, with HPs recognising the value of the AMBER care bundle, cognitive participation and collective action presented challenges. Specifically: (1) HPs were unable and unwilling to operationalise the concept of 'risk of dying' intervention eligibility criteria (2) integration relied on a 'champion' to drive participation and ensure sustainability; and (3) differing skills and confidence led to variable engagement with difficult conversations with patients and families about, for example, nearness to end of life. Opportunities for reflexive monitoring were not routinely embedded within the intervention. Reflections on the use of the AMBER care bundle from HPs and patients and families, including recommended modifications became evident through this NPT-driven analysis.

Conclusion: To be successfully normalised, new clinical practices, such as the AMBER care bundle, must be studied within the wider context in which they operate. NPT can be used to the aid identification of practical strategies to assist in normalisation of complex interventions where the focus of care is on clinical uncertainty in acute hospital settings.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0239181PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7494119PMC
November 2020

Editorial: Respiratory problems.

Curr Opin Support Palliat Care 2020 09;14(3):155-156

Department of Clinical Sciences Lund, Respiratory Medicine and Allergology, Faculty of Medicine, Lund University, Lund, Sweden.

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http://dx.doi.org/10.1097/SPC.0000000000000518DOI Listing
September 2020

Supportive and palliative care of adults with respiratory problems experiencing structural vulnerability from homelessness, prison or other criminal justice system involvement.

Curr Opin Support Palliat Care 2020 09;14(3):197-205

School of Health Sciences, University of East Anglia, Norwich, UK.

Purpose Of Review: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing.

Recent Findings: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks.

Summary: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.
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http://dx.doi.org/10.1097/SPC.0000000000000511DOI Listing
September 2020

Supportive and palliative care for people with respiratory problems and preexisting serious mental illness.

Curr Opin Support Palliat Care 2020 09;14(3):190-196

Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, NR4 7TJ, UK.

Purpose Of Review: People living with serious mental illness are at a higher risk of developing respiratory problems that can lead to increased morbidity and early mortality. This review aimed to identify recent advances in care provision for people with respiratory problems and preexisting serious mental illness to ease symptom burden and reduce the risk of premature mortality.

Recent Findings: Intervention-based studies in this area are scarce. The evidence reviewed originated from observational studies. Concluding comments from the synthesis suggest there are specific needs for proactive screening of respiratory function as part of routine physical health checks across care settings for people living with serious mental illness, more stringent monitoring of comorbid chronic lung conditions and increased attention in reducing the frequency respiratory infections. Integrated services across care settings are needed to support people with serious mental illness to limit the impact of modifiable lifestyle factors known to be detrimental to respiratory health, such as smoking.

Summary: Key priorities are identified to improve accessibility and inclusivity of respiratory care pathways for people living with serious mental illness to support early detection and proactive monitoring of respiratory problems to help reduce the risk of early mortality.
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http://dx.doi.org/10.1097/SPC.0000000000000510DOI Listing
September 2020

Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review.

Palliat Med 2020 12 16;34(10):1305-1315. Epub 2020 Jul 16.

School of Health Sciences, University of East Anglia, Norwich, UK.

Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited.

Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature.

Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions.

Data Sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997-Dec 2017).

Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management.

Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.
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http://dx.doi.org/10.1177/0269216320939243DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7543023PMC
December 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

When Frail Older People Relocate in Very Old Age, Who Makes the Decision?

Innov Aging 2019 Aug 6;3(4):igz030. Epub 2019 Sep 6.

Cambridge Institute of Public Health, University of Cambridge, UK, Norwich, UK.

Background And Objectives: Older people are likely to transition to a new home closer to family who can provide assistance or to long-term residential care as their health declines and their care needs increase. A minority choose to move to "age-friendly" housing before the onset of disability, but the majority prefer to "age in place" and defer moving until health crises compel a transition. Older people living with dementia are likely to move into residential care, but not much is known about the role they play in decision making around these moves. This qualitative study addresses this gap in knowledge by examining how a rare cohort of "older old" people, most with some level of cognitive impairment, were involved in decisions surrounding assistance seeking and moving to a care home.

Research Design And Methods: Thematic analysis of qualitative interview data from Cambridge City over-75s Cohort (CC75C) study participants aged 95 years and older, who had moved in later life, and their proxy informants ( = 26).

Results: Moves at such an old age were made due to a complexity of push and pull factors which had layered dynamics of decision making. In most cases ( = 22), decision making involved other people with varying degrees of decision ownership. Only four older people, who moved voluntarily, had full ownership of the decision to move. Many relatives reported being traumatized by events leading up to the move.

Discussion And Implications: "Older old" people are sometimes unable to make their own decisions about moving due to the urgency of health crisis and cognitive decline. There is a need to support relatives to discuss moving and housing options at timely junctures before health crises intervene in an effort to optimize older people's participation in decision making.
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http://dx.doi.org/10.1093/geroni/igz030DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7127322PMC
August 2019

The Effects of a Video Intervention on Posthospitalization Pulmonary Rehabilitation Uptake. A Randomized Controlled Trial.

Am J Respir Crit Care Med 2020 06;201(12):1517-1524

Harefield Respiratory Research Group and.

Pulmonary rehabilitation (PR) after hospitalizations for exacerbations of chronic obstructive pulmonary disease (COPD) improves exercise capacity and health-related quality of life and reduces readmissions. However, posthospitalization PR uptake is low. To date, no trials of interventions to increase uptake have been conducted. To study the effect of a codesigned education video as an adjunct to usual care on posthospitalization PR uptake. The present study was an assessor- and statistician-blinded randomized controlled trial with nested, qualitative interviews of participants in the intervention group. Participants hospitalized with COPD exacerbations were assigned 1:1 to receive either usual care (COPD discharge bundle including PR information leaflet) or usual care plus the codesigned education video delivered via a handheld tablet device at discharge. Randomization used minimization to balance age, sex, FEV % predicted, frailty, transport availability, and previous PR experience. The primary outcome was PR uptake within 28 days of hospital discharge. A total of 200 patients were recruited, and 196 were randomized (51% female, median FEV predicted, 36 [interquartile range, 27-48]). PR uptake was 41% and 34% in the usual care and intervention groups, respectively ( = 0.37), with no differences in secondary (PR referral and completion) or safety (readmissions and death) endpoints. A total of 6 of the 15 participants interviewed could not recall receiving the video. A codesigned education video delivered at hospital discharge did not improve posthospitalization PR uptake, referral, or completion.
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http://dx.doi.org/10.1164/rccm.201909-1878OCDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7301747PMC
June 2020

Support Needs Approach for Patients (SNAP) tool: a validation study.

BMJ Open 2019 11 19;9(11):e032028. Epub 2019 Nov 19.

School of Health Sciences, University of East Anglia (UEA), Norwich, UK

Objectives: Patient-identified need is key to delivering holistic, supportive, person-centred care, but we lack tools enabling patients to express what they need to manage life with a long-term condition. The Support Needs Approach for Patients (SNAP) tool was developed to enable patients with advanced chronic obstructive pulmonary disease (COPD) identify and express their unmet support needs to healthcare professionals (HCPs), but its validity is unknown. This study aimed to establish face, content and criterion validity of the SNAP tool.

Design: Two-stage mixed-methods study involving patients with advanced COPD and their carers. Stage 1: Face and content validity assessed though focus groups involving patients and carers considering appropriateness, relevance and completeness of the SNAP tool. Data were analysed using conventional content analysis. Stage 2: Content and criterion validity assessed in a postal survey through patient self-completion of the SNAP tool and disease impact measures (Chronic Respiratory Questionnaire, COPD Assessment Test, and Hospital Anxiety and Depression Scale). Content validity assessed using summary statistics; criterion validity via correlations between tool items and impact measures.

Settings And Participants: Two hundred and forty patients and carers participated. Stage 1 patient and informal carer participants were recruited from two primary care practices and Stage 2 patients from 28 practices. Participating practices located in the East of England were recruited via the NIHR Clinical Research Network: Eastern.

Results: Patients and carers found the tool patient-friendly and comprehensive, with potential clinical utility. No tool items were redundant. Clear correlations were found between tool items and the majority of items in the impact measures.

Conclusions: The SNAP tool has good face, content and criterion validity. It has potential to support the delivery of holistic, supportive, person-centred care by enabling patients to identify and express their unmet support needs to HCPs.
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http://dx.doi.org/10.1136/bmjopen-2019-032028DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6887094PMC
November 2019

The experience of transitions in care in very old age: implications for general practice.

Fam Pract 2019 11;36(6):778-784

School of Health Sciences, University of East Anglia, Norwich, UK.

Background: It can be challenging for general practitioners to support their oldest old patients through the complex process of relocation.

Objective: To provide a typology of the experiences of moving in very old age that is clinically useful for practitioners navigating very old people's relocation.

Methods: Qualitative analysis of data from a mixed-methods UK population-based longitudinal study, Cambridge City over-75s Cohort (CC75C), from Year 21 follow-up onwards. Interviews with participants aged ≥95 years old and proxy informants (Year 21: 44/48, 92%, subsequent attrition all deaths). Thematic analysis of qualitative data available from 26/32 participants who moved before they died.

Results: Individuals who moved voluntarily in with family experienced gratitude, and those who moved into sheltered house or care homes voluntarily had no regrets. One voluntary move into care was experienced with regret, loss and increased isolation as it severed life-long community ties. Regret and loss were key experiences for those making involuntary moves into care, but acceptance, relief and appreciation of increased company were also observed. The key experience of family members was trauma. Establishing connections with people or place ahead of moving, for example through previous respite care, eased moving. A checklist for practitioners based on the resulting typology of relocation is proposed.

Conclusions: Most of the sample moved into residential care. This study highlights the importance of connections to locality, people and place along with good family relationships as the key facilitators of a healthy transition into care for the oldest old. The proposed checklist may have clinical utility.
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http://dx.doi.org/10.1093/fampra/cmz014DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6859521PMC
November 2019

Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: A qualitative study to develop a tool.

Palliat Med 2019 06 5;33(6):663-675. Epub 2019 Mar 5.

3 School of Health Sciences, University of East Anglia, Norwich, UK.

Background: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this.

Aim: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals.

Design: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability.

Setting/participants: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated.

Results: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool's content and wording.

Conclusion: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.
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http://dx.doi.org/10.1177/0269216319833559DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6537033PMC
June 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

Predicting outcomes following holistic breathlessness services: A pooled analysis of individual patient data.

Palliat Med 2019 04 15;33(4):462-466. Epub 2019 Feb 15.

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

Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.

Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.

Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.

Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).

Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43-0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35-2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.

Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.
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http://dx.doi.org/10.1177/0269216319830299DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6439935PMC
April 2019

Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis.

Thorax 2019 03 29;74(3):270-281. Epub 2018 Nov 29.

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

Background: Breathlessness is a common, distressing symptom in people with advanced disease and a marker of deterioration. Holistic services that draw on integrated palliative care have been developed for this group. This systematic review aimed to examine the outcomes, experiences and therapeutic components of these services.

Methods: Systematic review searching nine databases to June 2017 for experimental, qualitative and observational studies. Eligibility and quality were independently assessed by two authors. Data on service models, health and cost outcomes were synthesised, using meta-analyses as indicated. Data on recipient experiences were synthesised thematically and integrated at the level of interpretation and reporting.

Results: From 3239 records identified, 37 articles were included representing 18 different services. Most services enrolled people with thoracic cancer, involved palliative care staff and comprised 4-6 contacts over 4-6 weeks. Commonly used interventions included breathing techniques, psychological support and relaxation techniques. Meta-analyses demonstrated reductions in Numeric Rating Scale distress due to breathlessness (n=324; mean difference (MD) -2.30, 95% CI -4.43 to -0.16, p=0.03) and Hospital Anxiety and Depression Scale (HADS) depression scores (n=408, MD -1.67, 95% CI -2.52 to -0.81, p<0.001) favouring the intervention. Statistically non-significant effects were observed for Chronic Respiratory Questionnaire (CRQ) mastery (n=259, MD 0.23, 95% CI -0.10 to 0.55, p=0.17) and HADS anxiety scores (n=552, MD -1.59, 95% CI -3.22 to 0.05, p=0.06). Patients and carers valued tailored education, self-management interventions and expert staff providing person-centred, dignified care. However, there was no observable effect on health status or quality of life, and mixed evidence around physical function.

Conclusion: Holistic services for chronic breathlessness can reduce distress in patients with advanced disease and may improve psychological outcomes of anxiety and depression. Therapeutic components of these services should be shared and integrated into clinical practice.

Registration Number: CRD42017057508.
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http://dx.doi.org/10.1136/thoraxjnl-2018-211589DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6467249PMC
March 2019

Effect of ambulatory oxygen on quality of life for patients with fibrotic lung disease (AmbOx): a prospective, open-label, mixed-method, crossover randomised controlled trial.

Lancet Respir Med 2018 10 28;6(10):759-770. Epub 2018 Aug 28.

National Heart and Lung Institute, Imperial College, London, UK.

Background: In fibrotic interstitial lung diseases, exertional breathlessness is strongly linked to health-related quality of life (HRQOL). Breathlessness is often associated with oxygen desaturation, but few data about the use of ambulatory oxygen in patients with fibrotic interstitial lung disease are available. We aimed to assess the effects of ambulatory oxygen on HRQOL in patients with interstitial lung disease with isolated exertional hypoxia.

Methods: AmbOx was a prospective, open-label, mixed-method, crossover randomised controlled clinical trial done at three centres for interstitial lung disease in the UK. Eligible patients were aged 18 years or older, had fibrotic interstitial lung disease, were not hypoxic at rest but had a fall in transcutaneous arterial oxygen saturation to 88% or less on a screening visit 6-min walk test (6MWT), and had self-reported stable respiratory symptoms in the previous 2 weeks. Participants were randomly assigned (1:1) to either oxygen treatment or no oxygen treatment for 2 weeks, followed by crossover for another 2 weeks. Randomisation was by a computer-generated sequence of treatments randomly permuted in blocks of constant size (fixed size of ten). The primary outcome, which was assessed by intention to treat, was the change in total score on the King's Brief Interstitial Lung Disease questionnaire (K-BILD) after 2 weeks on oxygen compared with 2 weeks of no treatment. General linear models with treatment sequence as a fixed effect were used for analysis. Patient views were explored through semi-structured topic-guided interviews in a subgroup of participants. This study was registered with ClinicalTrials.gov, number NCT02286063, and is closed to new participants with all follow-up completed.

Findings: Between Sept 10, 2014, and Oct 5, 2016, 84 patients were randomly assigned, 41 randomised to ambulatory oxygen first and 43 to no oxygen. 76 participants completed the trial. Compared with no oxygen, ambulatory oxygen was associated with significant improvements in total K-BILD scores (mean 55·5 [SD 13·8] on oxygen vs 51·8 [13·6] on no oxygen, mean difference adjusted for order of treatment 3·7 [95% CI 1·8 to 5·6]; p<0·0001), and scores in breathlessness and activity (mean difference 8·6 [95% CI 4·7 to 12·5]; p<0·0001) and chest symptoms (7·6 [1·9 to 13·2]; p=0·009) subdomains. However, the effect on the psychological subdomain was not significant (2·4 [-0·6 to 5·5]; p=0·12). The most common adverse events were upper respiratory tract infections (three in the oxygen group and one in the no-treatment group). Five serious adverse events, including two deaths (one in each group) occurred, but none were considered to be related to treatment.

Interpretation: Ambulatory oxygen seemed to be associated with improved HRQOL in patients with interstitial lung disease with isolated exertional hypoxia and could be an effective intervention in this patient group, who have few therapeutic options. However, further studies are needed to confirm this finding.

Funding: UK National Institute for Health Research.
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http://dx.doi.org/10.1016/S2213-2600(18)30289-3DOI Listing
October 2018

Support needs of patients with COPD: a systematic literature search and narrative review.

Int J Chron Obstruct Pulmon Dis 2018 26;13:1021-1035. Epub 2018 Mar 26.

School of Health Sciences, University of East Anglia, Norwich, UK.

Introduction: Understanding the breadth of patients' support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care.

Methods: We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted.

Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent.

Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP).
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http://dx.doi.org/10.2147/COPD.S155622DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5877489PMC
October 2018

Do patients and carers agree on symptom burden in advanced COPD?

Int J Chron Obstruct Pulmon Dis 2018 22;13:969-977. Epub 2018 Mar 22.

School of Health Sciences, University of East Anglia, Norwich, UK.

Objective: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision making in managing the high symptom burden of COPD in the home setting. Few studies have investigated agreement between patients and carers in COPD. We aimed to assess agreement between patients and carers on symptoms, and factors associated with disagreement in a population-based sample of patients with advanced COPD.

Patients And Methods: This was a prospective, cross-sectional analysis of data from 119 advanced COPD patients and their carers. Patients and carers separately rated symptoms on a 4-point scale. Wilcoxon signed-rank tests and weighted Cohen's kappa determined differences in patient and carer scores and patient-carer agreement, respectively. We identified characteristics associated with incongruence using Spearman's rank correlation and Mann-Whitney tests.

Results: There were no significant differences between group-level patient and carer scores for any symptom. Patient-carer individual-level agreement was moderate for constipation (k=0.423), just below moderate for diarrhea (k=0.393) and fair for depression (k=0.341), fatigue (k=0.294), anxiety (k=0.289) and breathlessness (k=0.210). Estimation of greater patient symptom burden by carers relative to patients themselves was associated with non-spousal patient-carer relationship, non-cohabitating patients and carers, carer symptoms of anxiety and depression and more carer unmet support needs. Greater symptom burden estimation by the patient relative to the carer was associated with younger patients and longer duration of COPD.

Conclusion: Overall, agreement between patients and carers was fair to moderate and was poorer for more subjective symptoms. There is a need to encourage open dialogue between patients and carers to promote shared understanding, help patients express themselves and encourage carers to draw attention to symptoms that patients do not report. The findings suggest a need to screen for and address both the psychological morbidities in patients with advanced COPD and their carers and unmet support needs in carers.
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http://dx.doi.org/10.2147/COPD.S147892DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5868585PMC
October 2018

Are within-person Numerical Rating Scale (NRS) ratings of breathlessness 'on average' valid in advanced disease for patients and for patients' informal carers?

BMJ Open Respir Res 2017 11;4(1):e000235. Epub 2017 Oct 11.

University of East Anglia, School of Health Sciences, Norwich, UK.

Introduction: The Numerical Rating Scale (NRS) is frequently used to assess patient-reported breathlessness in both a research and clinical context. A subgroup of patients report average breathlessness as worse than their worst breathlessness in the last 24 hours (paradoxical average). The Peak/End rule describes how the most extreme and current breathlessness influence reported average. This study seeks to highlight the existence of a subpopulation who give 'paradoxical averages using the NRS, to characterise this group and to investigate the explanatory relevance of the 'Peak/End' rule.

Methods: Data were collected within mixed method face-to-face interviews for three studies: the Living with Breathlessness Study and the two subprotocols of the Breathlessness Intervention Service phase III randomised controlled trial. Key variables from the three datasets were pooled (n=561), and cases where participants reported a paradoxical average (n=45) were identified. These were compared with non-cases and interview transcripts interrogated. NRS ratings of average breathlessness were assessed for fit to Peak/End rule.

Results: Patients in the paradoxical average group had higher Chronic Respiratory Questionnaire physical domain scores on average p=0.042). Peak/End rule analysis showed high positive correlation (Spearman's rho=0.756, p<0.001).

Conclusions: The NRS requires further standardisation with reporting of question order and construction of scale used to enable informed interpretation. The application of the Peak/End rule demonstrates fallibility of NRS-Average as a construct as it is affected by current breathlessness. Measurement of breathlessness is important for both clinical management and research, but standardisation and transparency are required for meaningful results.
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http://dx.doi.org/10.1136/bmjresp-2017-000235DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5652535PMC
October 2017

Associations between the psychological health of patients and carers in advanced COPD.

Int J Chron Obstruct Pulmon Dis 2017 30;12:2813-2821. Epub 2017 Sep 30.

School of Health Sciences, University of East Anglia, Norwich, UK.

Objective: Anxiety and depression are highly prevalent in patients with COPD and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association and factors associated with anxiety and depression in patients, carers, and both (dyads), in a population-based sample.

Materials And Methods: This was a prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression, tests determined associations between patient and carer symptoms of anxiety/depression, and and independent -tests for normally distributed variables (otherwise Mann-Whitney tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient-carer dyads were categorized into four groups relating to the presence of anxious/depressive symptoms in: both patient and carer, patient only, carer only, and neither. Factors associated with dyad symptoms of anxiety/depression were determined with tests and one-way analysis of variance for normally distributed variables (otherwise Kruskal-Wallis tests).

Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46% (n=52) and 23% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical comorbidities, more exacerbations, greater dyspnea, greater fatigue, poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical comorbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden, and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue.

Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, impact on quality of life and health care use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended.
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http://dx.doi.org/10.2147/COPD.S139188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5628689PMC
June 2018

New models of care for respiratory disease: A thematic edition.

Chron Respir Dis 2018 02 5;15(1):3-4. Epub 2017 Oct 5.

4 Canadian Foundation for Healthcare Improvement, Ottawa, Ontario, Canada.

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http://dx.doi.org/10.1177/1479972316679682DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5802652PMC
February 2018