Publications by authors named "Deokhee Yi"

29 Publications

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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

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BMC Med 2020 11 3;18(1):344. Epub 2020 Nov 3.

Department of Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, Bessemer Road, London, SE5 9PJ, UK.

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.

Methods: Mortality follow-back postal survey.

Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).

Participants: Informal carers (ICrs) of decedents who had received palliative care.

Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).

Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.

Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.

Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
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http://dx.doi.org/10.1186/s12916-020-01768-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7606031PMC
November 2020

The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers.

Cochrane Database Syst Rev 2020 09 30;9:CD012780. Epub 2020 Sep 30.

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

Background: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously.

Objectives: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families.

Search Methods: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies.

Selection Criteria: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting.

Data Collection And Analysis: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available.

Main Results: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision.

Authors' Conclusions: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations.
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http://dx.doi.org/10.1002/14651858.CD012780.pub2DOI Listing
September 2020

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

Effect of Short-term Integrated Palliative Care on Patient-Reported Outcomes Among Patients Severely Affected With Long-term Neurological Conditions: A Randomized Clinical Trial.

JAMA Netw Open 2020 08 3;3(8):e2015061. Epub 2020 Aug 3.

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

Importance: Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking.

Objective: To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs.

Design, Setting, And Participants: Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019.

Interventions: Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174).

Main Outcomes And Measures: Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat.

Results: A total of 350 patients (mean [SD] age 67 [12] years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers.

Conclusions And Relevance: In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted.

Trial Registration: isrctn.org Identifier: ISRCTN18337380.
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http://dx.doi.org/10.1001/jamanetworkopen.2020.15061DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7455856PMC
August 2020

Understanding usual care in randomised controlled trials of complex interventions: A multi-method approach.

Palliat Med 2020 05 21;34(5):667-679. Epub 2020 Feb 21.

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

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear.

Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT.

Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim.

Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge.

Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites.

Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.
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http://dx.doi.org/10.1177/0269216320905064DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7238505PMC
May 2020

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

Palliat Med 2020 04 3;34(4):513-523. Epub 2020 Feb 3.

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

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.

Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.

Design: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs.

Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).

Participants: Informal carers of decedents who had received palliative care participated in the study.

Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( = 25.79/14.27,  < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.

Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
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http://dx.doi.org/10.1177/0269216319896745DOI Listing
April 2020

Randomised, double-blind, multicentre, mixed-methods, dose-escalation feasibility trial of mirtazapine for better treatment of severe breathlessness in advanced lung disease (BETTER-B feasibility).

Thorax 2020 02 8;75(2):176-179. Epub 2020 Jan 8.

Clinical Trials Research Unit (CTRU), University of Leeds, Leeds, West Yorkshire, UK.

New treatments are required for severe breathlessness in advanced disease. We conducted a randomised feasibility trial of mirtazapine over 28 days in adults with a modified medical research council breathlessness scale score ≥3. Sixty-four patients were randomised (409 screened), achieving our primary feasibility endpoint of recruitment. Most patients had COPD or interstitial lung disease; 52 (81%) completed the trial. There were no differences between placebo and mirtazapine in tolerability or safety, and blinding was maintained. Worst breathlessness ratings at day 28 (primary clinical activity endpoint) were, 7.1 (SD 2.3, placebo) and 6.3 (SD 1.8, mirtazapine). A phase III trial of mirtazapine is indicated. Trial registration: ISRCTN 32236160; European Clinical Trials Database (EudraCT no: 2015-004064-11).
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http://dx.doi.org/10.1136/thoraxjnl-2019-213879DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7029228PMC
February 2020

The AMBER care bundle for hospital inpatients with uncertain recovery nearing the end of life: the ImproveCare feasibility cluster RCT.

Health Technol Assess 2019 10;23(55):1-150

Cicely Saunders Institute, King's College London, London, UK.

Background: Patients admitted to hospital with a terminal illness and uncertain recovery often receive inconsistent care and do not have the opportunity to die in their preferred place of death. Previous end-of-life care packages, such as the Liverpool Care Pathway for the Dying Patient, have sometimes been badly implemented. The AMBER (Assessment; Management; Best practice; Engagement; Recovery uncertain) care bundle was developed to remedy this. It has not been evaluated in a randomised trial, but a definitive trial would face many hurdles.

Objective: To optimise the design of and determine the feasibility of a pragmatic, multicentre, cluster randomised controlled trial of the AMBER care bundle compared with best standard care.

Design: A feasibility cluster randomised controlled trial including semistructured interviews with patients and relatives, focus groups with health-care professionals, non-participant observations of multidisciplinary team meetings, a standard care survey, heat maps and case note reviews. Retrospective data were collected from the family or close friends of deceased patients via a bereavement survey.

Setting: Four general medical wards at district general hospitals in England.

Participants: There were 65 participants (control,  = 36; intervention,  = 29). There were 24 interviews, four focus groups, 15 non-participant meeting observations, six case note reviews and three heat maps, and 15 of out 23 bereavement, standard care surveys were completed.

Intervention: The AMBER care bundle is implemented by a nurse facilitator. It includes the development and documentation of a medical plan, consideration of outcomes, resuscitation and escalation status and daily plan revisiting. The AMBER care bundle encourages staff, patients and families to talk openly about their preferences and priorities should the worst happen.

Main Outcome Measures: Two 'candidate' primary outcomes were selected to be evaluated for a future definitive trial: Integrated Palliative care Outcome Scale patient/family anxiety and communication subscale and ''. The secondary outcome measures were Integrated Palliative care Outcome Scale symptoms, Australian-modified Karnofsky Performance Status scale, EuroQol-5 Dimensions, five-level version, Client Service Receipt Inventory, recruitment rate, intervention fidelity and intervention acceptability.

Results: Data were collected for 65 patients. This trial was not powered to measure clinical effectiveness, but variance and changes observed in the Integrated Palliative care Outcome Scale subscale indicated that this measure would probably detect differences within a definitive trial. It was feasible to collect data on health, social and informal care service use and on quality of life at two time points. The AMBER care bundle was broadly acceptable to all stakeholders and was delivered as planned. The emphasis on 'clinical uncertainty' prompted health-care professional awareness of often-overlooked patients. Reviewing patients' AMBER care bundle status was integrated into routine practice. Refinements included simplifying the inclusion criteria and improving health-care professional communication training. Improvements to trial procedures included extending the time devoted to recruitment and simplifying consent procedures. There was also a recommendation to reduce data collected from patients and relatives to minimise burden.

Limitations: The recruitment rate was lower than anticipated. The inclusion criteria for the trial were difficult to interpret. Information sheets and consent procedures were too detailed and lengthy for the target population. Health-care professionals' enthusiasm and specialty were not considered while picking trial wards. Participant recruitment took place later during hospital admission and the majority of participants were lost to follow-up because they had been discharged. Those who participated may have different characteristics from those who did not.

Conclusions: This feasibility trial has demonstrated that an evaluation of the AMBER care bundle among an acutely unwell patient population, although technically possible, is not practical or feasible. The intervention requires optimisation.

Trial Registration: Current Controlled Trials ISRCTN36040085. National Institute for Health Research (NIHR) Portfolio registration number 32682.

Funding: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in ; Vol. 23, No. 55. See the NIHR Journals Library website for further project information.
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http://dx.doi.org/10.3310/hta23550DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6801365PMC
October 2019

Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.

Milbank Q 2019 03;97(1):113-175

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

Policy Points We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.

Context: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.

Methods: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.

Results: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.

Conclusions: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
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http://dx.doi.org/10.1111/1468-0009.12373DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422603PMC
March 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

A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3-5 chronic kidney diseases: study protocol.

Ann Palliat Med 2019 Apr 17;8(2):190-198. Epub 2018 Oct 17.

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

Background: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe the protocol of a longitudinal observational study among people living with CKD. The study is developed to assess the bio-psychosocial factors associated with palliative care symptoms and concerns, and pattern of health services usage among Nigerians with stages 3-5 CKD. The overall objective is to establish the evidence-base for advocacy and policy formulation, treatment guidelines, care and services, and future clinical trial studies.

Methods: This is a multi-center study to investigate the longitudinal course of symptoms and other concerns among patients with stages 3-5 CKD in Nigeria. Interviewer administered and self-report measures at baseline (T0) and 3-month (T1) address socio-demographic characteristics, clinical-illness related information, palliative care-related symptoms and other concerns, pattern of formal or informal service usage, and bio psychosocial measures including estimated glomerular filtration rate (eGFR), anxiety, depression, quality of life, functioning, social support and spiritual wellbeing.

Discussion: This study represents the first longitudinal investigation of palliative care symptoms and concerns among people with CKD in Nigeria. It includes early stages of CKD in compliance with best practices, and a comprehensive range of bio-psychosocial outcomes to understand how these factors are associated with symptoms. This study will provide evidence for how best to integrate palliative care into management of CKD to improve care and quality of life of people with CKD. The study team welcomes collaborations with both national and international researchers.
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http://dx.doi.org/10.21037/apm.2018.10.03DOI Listing
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

Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries.

BMC Geriatr 2017 11 23;17(1):271. Epub 2017 Nov 23.

The Centre of Health Policy and Management, Trinity College Dublin, Room 0.21, 3-4 Foster Place, College Green, Dublin 2, Ireland.

Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death.

Methods: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors.

Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference.

Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'.
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http://dx.doi.org/10.1186/s12877-017-0648-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5701500PMC
November 2017

Valuing Attributes of Home Palliative Care With Service Users: A Pilot Discrete Choice Experiment.

J Pain Symptom Manage 2017 12 8;54(6):973-985. Epub 2017 Aug 8.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, United Kingdom.

Context: Discrete choice experiment (DCE) is a quantitative method that helps determine which service attributes are most valued by people and consequently improve their well-being.

Objectives: The objective of this study was to test a new DCE on home palliative care (HPC).

Methods: Cross-sectional survey using the DCE method with adult patients and their family caregivers, users of three HPC services in Portugal. Service attributes were based on a Cochrane review, a meta-ethnography, and the few existing DCEs on HPC: 1) team's availability, 2) support for family caregivers, 3) homecare support, 4) information and planning, and 5) waiting time. The experimental design consisted in three blocks of eight choice sets where participants chose between two service alternatives that combined different levels of each attribute. We piloted the DCE using cognitive interviewing. Interviews were analyzed for difficulties using Tourangeau's model of information processing.

Results: The DCE was conducted with 21 participants of 37 eligible (10 patients with median Palliative Performance Scale score = 45, 11 caregivers). Most participants found the DCE easy (median 2 from 1 to 5), although two patients did not finish the exercise. Key difficulties related to comprehension (e.g., waiting time sometimes understood as response time for visit instead of time from referral to care start) and judgment (e.g., indecision due to similar service alternatives).

Conclusion: The DCE method is feasible and acceptable but not all patients are able to participate. In the main study phase, we will give more attention to the explanation of the waiting time attribute.
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http://dx.doi.org/10.1016/j.jpainsymman.2017.05.005DOI Listing
December 2017

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis.

Palliat Med 2017 04 13;31(4):369-377. Epub 2017 Feb 13.

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

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified.

Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs.

Design: A cross-sectional secondary analysis of data from a randomised controlled trial.

Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London.

Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients.

Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.
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http://dx.doi.org/10.1177/0269216317690994DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5405827PMC
April 2017

Factors Associated with Transition from Community Settings to Hospital as Place of Death for Adults Aged 75 and Older: A Population-Based Mortality Follow-Back Survey.

J Am Geriatr Soc 2016 11 9;64(11):2210-2217. Epub 2016 Sep 9.

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

Objectives: To identify factors associated with end-of-life (EoL) transition from usual place of care to the hospital as place of death for people aged 75 and older.

Design: Population-based mortality follow-back survey.

Setting: Deaths over 6 months in 2012 in two unitary authorities in England covering 800 square miles with more than 1 million residents.

Participants: A random sample of people aged 75 and older who died in a care home or hospital and all those who died at home or in a hospice unit (N = 882). Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey.

Measurements: The main outcome was EoL transition to the hospital as place of death versus no EoL transition to the hospital. Multivariable modified Poisson regression was used to examine factors (illness, demographic, environmental) related to EoL transition to the hospital.

Results: Four hundred forty-three (50.2%) individuals responded, describing the care of the people who died. Most died from nonmalignant conditions (76.3%) at a mean age of 87.4 ± 6.4. One hundred forty-six (32.3%) transitioned to the hospital and died there. Transition was more likely for individuals with respiratory disease than for those with cancer (prevalence ratio (PR) = 2.07, 95% confidence interval (CI) = 1.42-3.01) and for people with severe breathlessness (PR = 1.96, 95% CI = 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional (PR = 0.60, 95% CI = 0.42-0.88) and when there was a key healthcare professional (PR = 0.74, 95% CI = 0.58-0.95).

Conclusion: To reduce EoL transition to the hospital for older people, there needs to be improved management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions, and in planning for future care.
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http://dx.doi.org/10.1111/jgs.14442DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5324592PMC
November 2016

The effect of user fee exemption on the utilization of maternal health care at mission health facilities in Malawi.

Health Policy Plan 2016 Nov 11;31(9):1184-92. Epub 2016 May 11.

Department of Planning and Policy Development, Ministry of Health, P.O Box 30377, Lilongwe 3, Malawi.

The Government of Malawi has signed contracts called service level agreements (SLAs) with mission health facilities in order to exempt their catchment populations from paying user fees. Government in turn reimburses the facilities for the services that they provide. SLAs started in 2006 with 28 out of 165 mission health facilities and increased to 74 in 2015. Most SLAs cover only maternal, neonatal and in some cases child health services due to limited resources. This study evaluated the effect of user fee exemption on the utilization of maternal health services. The difference-in-differences approach was combined with propensity score matching to evaluate the causal effect of user fee exemption. The gradual uptake of the policy provided a natural experiment with treated and control health facilities. A second control group, patients seeking non-maternal health care at CHAM health facilities with SLAs, was used to check the robustness of the results obtained using the primary control group. Health facility level panel data for 142 mission health facilities from 2003 to 2010 were used. User fee exemption led to a 15% (P <  0.01) increase in the mean proportion of women who made at least one antenatal care (ANC) visit during pregnancy, a 12% (P < 0.05) increase in average ANC visits and an 11% (P < 0.05) increase in the mean proportion of pregnant women who delivered at the facilities. No effects were found for the proportion of pregnant women who made the first ANC visit in the first trimester and the proportion of women who made postpartum care visits. We conclude that user fee exemption is an important policy for increasing maternal health care utilization. For certain maternal services, however, other determinants may be more important.
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http://dx.doi.org/10.1093/heapol/czw050DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5035778PMC
November 2016

Exploring preferences for symptom management in primary care: a discrete choice experiment using a questionnaire survey.

Br J Gen Pract 2015 Jul 15;65(636):e478-88. Epub 2015 Jun 15.

Academic Primary Care;

Background: Symptoms are important drivers for the use of primary care services. Strategies aimed at shifting the focus away from the GP have broadened the range of primary healthcare available.

Aim: To explore preferences for managing symptoms and investigate trade-offs that the public are willing to make when deciding between different primary care services.

Design And Setting: UK-wide postal questionnaire survey of 1370 adults.

Method: A discrete choice experiment examined management preferences for three symptoms of differing seriousness (diarrhoea, dizziness, and chest pain). Willingness-to-pay estimates compared preferences between symptoms, and by sex, age, and income.

Results: Preferences differed significantly between symptoms. 'Self-care' was the preferred action for diarrhoea and 'consulting a GP' for dizziness and chest pain. 'Waiting time' and 'chance of a satisfactory outcome' were important factors for all three symptoms, although their relative importance differed. Broadly, people were more prepared to wait longer and less prepared to trade a good chance of a satisfactory outcome for symptoms rated as more serious. Generally, preferences within subgroups followed similar patterns as for the whole sample, although there were differences in the relative strength of preferences.

Conclusion: Despite increased choices in primary care, 'traditional' actions of 'self-care' for minor symptoms and 'GP consultation' for more serious symptoms were preferred. The present findings suggest, however, that people may be willing to trade between different health services, particularly for less serious symptoms. Understanding the relative importance of different factors may help inform interventions aimed at changing management behaviour or improving services.
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http://dx.doi.org/10.3399/bjgp15X685705DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4484949PMC
July 2015

Benefits of Incentives for Breastfeeding and Smoking cessation in pregnancy (BIBS): a mixed-methods study to inform trial design.

Health Technol Assess 2015 Apr;19(30):1-522, vii-viii

Health Services Research Unit, University of Aberdeen, Aberdeen, UK.

Background: Smoking in pregnancy and/or not breastfeeding have considerable negative health outcomes for mother and baby.

Aim: To understand incentive mechanisms of action for smoking cessation in pregnancy and breastfeeding, develop a taxonomy and identify promising, acceptable and feasible interventions to inform trial design.

Design: Evidence syntheses, primary qualitative survey, and discrete choice experiment (DCE) research using multidisciplinary, mixed methods. Two mother-and-baby groups in disadvantaged areas collaborated throughout.

Setting: UK.

Participants: The qualitative study included 88 pregnant women/recent mothers/partners, 53 service providers, 24 experts/decision-makers and 63 conference attendees. The surveys included 1144 members of the general public and 497 health professionals. The DCE study included 320 women with a history of smoking.

Methods: (1) Evidence syntheses: incentive effectiveness (including meta-analysis and effect size estimates), delivery processes, barriers to and facilitators of smoking cessation in pregnancy and/or breastfeeding, scoping review of incentives for lifestyle behaviours; (2) qualitative research: grounded theory to understand incentive mechanisms of action and a framework approach for trial design; (3) survey: multivariable ordered logit models; (4) DCE: conditional logit regression and the log-likelihood ratio test.

Results: Out of 1469 smoking cessation and 5408 breastfeeding multicomponent studies identified, 23 smoking cessation and 19 breastfeeding studies were included in the review. Vouchers contingent on biochemically proven smoking cessation in pregnancy were effective, with a relative risk of 2.58 (95% confidence interval 1.63 to 4.07) compared with non-contingent incentives for participation (four studies, 344 participants). Effects continued until 3 months post partum. Inconclusive effects were found for breastfeeding incentives compared with no/smaller incentives (13 studies) but provider commitment contracts for breastfeeding show promise. Intervention intensity is a possible confounder. The acceptability of seven promising incentives was mixed. Women (for vouchers) and those with a lower level of education (except for breastfeeding incentives) were more likely to disagree. Those aged ≤ 44 years and ethnic minority groups were more likely to agree. Agreement was greatest for a free breast pump and least for vouchers for breastfeeding. Universal incentives were preferred to those targeting low-income women. Initial daily text/telephone support, a quitting pal, vouchers for > £20.00 per month and values up to £80.00 increase the likelihood of smoking cessation. Doctors disagreed with provider incentives. A 'ladder' logic model emerged through data synthesis and had face validity with service users. It combined an incentive typology and behaviour change taxonomy. Autonomy and well-being matter. Personal difficulties, emotions, socialising and attitudes of others are challenges to climbing a metaphorical 'ladder' towards smoking cessation and breastfeeding. Incentive interventions provide opportunity 'rungs' to help, including regular skilled flexible support, a pal, setting goals, monitoring and outcome verification. Individually tailored and non-judgemental continuity of care can bolster women's capabilities to succeed. Rigid, prescriptive interventions placing the onus on women to behave 'healthily' risk them feeling pressurised and failing. To avoid 'losing face', women may disengage.

Limitations: Included studies were heterogeneous and of variable quality, limiting the assessment of incentive effectiveness. No cost-effectiveness data were reported. In surveys, selection bias and confounding are possible. The validity and utility of the ladder logic model requires evaluation with more diverse samples of the target population.

Conclusions: Incentives provided with other tailored components show promise but reach is a concern. Formal evaluation is recommended. Collaborative service-user involvement is important.

Study Registration: This study is registered as PROSPERO CRD42012001980.

Funding: The National Institute for Health Research Health Technology Assessment programme.
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http://dx.doi.org/10.3310/hta19300DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4780978PMC
April 2015

Unintended consequences of incentive provision for behaviour change and maintenance around childbirth.

PLoS One 2014 30;9(10):e111322. Epub 2014 Oct 30.

Nursing, Midwifery and Allied Health Professions Research Unit, University of Stirling, Stirling, Scotland.

Financial (positive or negative) and non-financial incentives or rewards are increasingly used in attempts to influence health behaviours. While unintended consequences of incentive provision are discussed in the literature, evidence syntheses did not identify any primary research with the aim of investigating unintended consequences of incentive interventions for lifestyle behaviour change. Our objective was to investigate perceived positive and negative unintended consequences of incentive provision for a shortlist of seven promising incentive strategies for smoking cessation in pregnancy and breastfeeding. A multi-disciplinary, mixed-methods approach included involving two service-user mother and baby groups from disadvantaged areas with experience of the target behaviours as study co-investigators. Systematic reviews informed the shortlist of incentive strategies. Qualitative semi-structured interviews and a web-based survey of health professionals asked open questions on positive and negative consequences of incentives. The participants from three UK regions were a diverse sample with and without direct experience of incentive interventions: 88 pregnant women/recent mothers/partners/family members; 53 service providers; 24 experts/decision makers and interactive discussions with 63 conference attendees. Maternity and early years health professionals (n = 497) including doctors, midwives, health visitors, public health and related staff participated in the survey. Qualitative analysis identified ethical, political, cultural, social and psychological implications of incentive delivery at population and individual levels. Four key themes emerged: how incentives can address or create inequalities; enhance or diminish intrinsic motivation and wellbeing; have a positive or negative effect on relationships with others within personal networks or health providers; and can impact on health systems and resources by raising awareness and directing service delivery, but may be detrimental to other health care areas. Financial incentives are controversial and generated emotive and oppositional responses. The planning, design and delivery of future incentive interventions should evaluate unexpected consequences to inform the evidence for effectiveness, cost-effectiveness and future implementation.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0111322PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214733PMC
December 2015

Gaining pounds by losing pounds: preferences for lifestyle interventions to reduce obesity.

Health Econ Policy Law 2015 Apr 28;10(2):161-82. Epub 2014 Oct 28.

6Health Economics Research Unit,University of Aberdeen,UK.

While there is evidence that weight-loss interventions reduce morbidity, indications of their acceptability are limited. Understanding preferences for lifestyle interventions will help policymakers design interventions. We used a discrete choice experiment to investigate preferences for lifestyle interventions to reduce adult obesity. Attributes focused on: the components of the programme; weight change; short-term and longer-term health gains; time spent on the intervention and financial costs incurred. Data were collected through a web-based questionnaire, with 504 UK adults responding. Despite evidence that dietary interventions are the most effective way to lose weight, respondents preferred lifestyle interventions involving physical activity. While the evidence suggests that behaviour change support improves effectiveness of interventions, its value to participants was limited. A general preference to maintain current lifestyles, together with the sensitivity of take up to financial costs, suggests financial incentives could be used to help maximise uptake of healthy lifestyle interventions. An important target group for change, men, required more compensation to take up healthier lifestyles. Those of normal weight, who will increase in weight over time if they do not change their lifestyle, required the highest compensation. Policymakers face challenges in inducing people to change their behaviour and adopt healthy lifestyles.
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http://dx.doi.org/10.1017/S1744133114000413DOI Listing
April 2015

Public acceptability of financial incentives for smoking cessation in pregnancy and breast feeding: a survey of the British public.

BMJ Open 2014 Jul 18;4(7):e005524. Epub 2014 Jul 18.

Health Services Research Unit, University of Aberdeen, Aberdeen, UK.

Objective: To survey public attitudes about incentives for smoking cessation in pregnancy and for breast feeding to inform trial design.

Design: Cross-sectional survey.

Setting And Participants: British general public.

Methods: Seven promising incentive strategies had been identified from evidence syntheses and qualitative interview data from service users and providers. These were shopping vouchers for: (1) validated smoking cessation in pregnancy and (2) after birth; (3) for a smoke-free home; (4) for proven breast feeding; (5) a free breast pump; (6) payments to health services for reaching smoking cessation in pregnancy targets and (7) breastfeeding targets. Ipsos MORI used area quota sampling and home-administered computer-assisted questionnaires, with randomised question order to assess agreement with different incentives (measured on a five-point scale). Demographic data and target behaviour experience were recorded. Analysis used multivariable ordered logit models.

Results: Agreement with incentives was mixed (ranging from 34% to 46%) among a representative sample of 1144 British adults. Mean agreement score was highest for a free breast pump, and lowest for incentives for smoking abstinence after birth. More women disagreed with shopping vouchers than men. Those with lower levels of education disagreed more with smoking cessation incentives and a breast pump. Those aged 44 or under agreed more with all incentive strategies compared with those aged 65 and over, particularly provider targets for smoking cessation. Non-white ethnic groups agreed particularly with breastfeeding incentives. Current smokers with previous stop attempts and respondents who had breast fed children agreed with providing vouchers for the respective behaviours. Up to £40/month vouchers for behaviour change were acceptable (>85%).

Conclusions: Women and the less educated were more likely to disagree, but men and women of childbearing age to agree, with incentives designed for their benefit. Trials evaluating reach, impact on health inequalities and ethnic groups are required prior to implementing incentive interventions.

Trial Registration Number: CRD42012001980.
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http://dx.doi.org/10.1136/bmjopen-2014-005524DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4120368PMC
July 2014

Using discrete choice experiments to inform randomised controlled trials: an application to chronic low back pain management in primary care.

Eur J Pain 2011 May 12;15(5):531.e1-10. Epub 2010 Nov 12.

Health Economics Research Unit, University of Aberdeen, Aberdeen AB25 2ZD, UK.

Pain Management Programmes (PMPs) are a multi-disciplinary approach to the management of chronic low back pain (CLBP). Notwithstanding evidence of effectiveness, successful take-up of programmes requires acceptability to patients. We used a discrete choice experiment to investigate patient preferences for alternative PMPs for managing CLBP in primary care. Specifically, we estimated the probability of uptake of alternative configurations of PMPs. Potential attributes and associated levels influencing take-up were identified through a systematic literature review, survey of current PMPs, expert consultation, and focus groups. Five attributes were included: content; provider; schedule; group size; and travel time to clinic. Four hundred and fourteen questionnaires were mailed to patients attending clinics and 124 questionnaires were returned suitable for analysis. Method of delivery influenced probability of take-up, with small group sizes and low intensity programmes over a prolonged period increasing the probabilities. Travel time was also important. However, providers and contents of PMPs were not main drivers of preferences, though those with more severe pain did prefer PMPs provided by more specialists. Probability of take-up increases when PMPs better reflect patient preferences. Given preferences, resource constraints, and evidence on clinical outcomes of alternative configurations it is suggested more resource-intensive PMPs be reserved for those with the most severe and disabling pain and less intensive programmes delivered over a longer time period in smaller groups for those with less severe pain. These findings can inform future randomised trials to evaluate acceptable PMPs in primary care.
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http://dx.doi.org/10.1016/j.ejpain.2010.10.008DOI Listing
May 2011

Has payment by results affected the way that English hospitals provide care? Difference-in-differences analysis.

BMJ 2009 Aug 27;339:b3047. Epub 2009 Aug 27.

Health Economics Research Unit, University of Aberdeen, Aberdeen AB25 2ZD.

Objective: To examine whether the introduction of payment by results (a fixed tariff case mix based payment system) was associated with changes in key outcome variables measuring volume, cost, and quality of care between 2003/4 and 2005/6.

Setting: Acute care hospitals in England.

Design: Difference-in-differences analysis (using a control group created from trusts in England and providers in Scotland not implementing payment by results in the relevant years); retrospective analysis of patient level secondary data with fixed effects models.

Data Sources: English hospital episode statistics and Scottish morbidity records for 2002/3 to 2005/6.

Main Outcome Measures: Changes in length of stay and proportion of day case admissions as a proxy for unit cost; growth in number of spells to measure increases in output; and changes in in-hospital mortality, 30 day post-surgical mortality, and emergency readmission after treatment for hip fracture as measures of impact on quality of care.

Results: Length of stay fell more quickly and the proportion of day cases increased more quickly where payment by results was implemented, suggesting a reduction in the unit costs of care associated with payment by results. Some evidence of an association between the introduction of payment by results and growth in acute hospital activity was found. Little measurable change occurred in the quality of care indicators used in this study that can be attributed to the introduction of payment by results.

Conclusion: Reductions in unit costs may have been achieved without detrimental impact on the quality of care, at least in as far as these are measured by the proxy variables used in this study.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2733950PMC
http://dx.doi.org/10.1136/bmj.b3047DOI Listing
August 2009

Effects of Medicare payment changes on nursing home staffing and deficiencies.

Health Serv Res 2004 Jun;39(3):463-88

Center for Health Equity Research and Promotion, University of Pennsylvania, Philadelphia VA Medical Center, 9 East, Philadelphia, PA 19104, USA.

Objective: To investigate the effects of Medicare's Prospective Payment System (PPS) for skilled nursing facilities (SNFs) and associated rate changes on quality of care as represented by staffing ratios and regulatory deficiencies.

Data Sources: Online Survey, Certification and Reporting (OSCAR) data from 1996-2000 were linked with Area Resource File (ARF) and Medicare Cost Report data to form a panel dataset.

Study Design: A difference-in-differences model was used to assess effects of the PPS and the BBRA (Balanced Budget Refinement Act) on staffing and deficiencies, a design that allows the separation of the effects of the policies from general trends. Ordinary least squares and negative binomial models were used.

Data Collection Methods: The OSCAR and Medicare Cost Report data are self-reported by nursing facilities; ARF data are publicly available. Data were linked by provider ID and county.

Principal Findings: We find that professional staffing decreased and regulatory deficiencies increased with PPS, and that both effects were mitigated with the BBRA rate increases. The effects appear to increase with the percent of Medicare residents in the facility except, in some cases, at the highest percentage of Medicare. The findings on staffing are statistically significant. The effects on deficiencies, though exhibiting consistent signs and magnitudes with the staffing results, are largely insignificant.

Conclusions: Medicare's PPS system and associated rate cuts for SNFs have had a negative effect on staffing and regulatory compliance. Further research is necessary to determine whether these changes are associated with worse outcomes. Findings from this investigation could help guide policy modifications that support the provision of quality nursing home care.
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http://dx.doi.org/10.1111/j.1475-6773.2004.00240.xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361020PMC
June 2004