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1.  Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions 
PLoS ONE  2016;11(10):e0165379.
There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population.
Data and Methods
Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson’s Disease Questionnaire), responsiveness and minimally clinically important difference.
Of the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3–5. The IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0–32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach’s α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson’s r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson’s r: 0.5–0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity.
IPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups.
PMCID: PMC5079599  PMID: 27780237
2.  Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review 
BMC Medicine  2016;14:38.
High symptom burden is common in long-term care residents with dementia and results in distress and behavioral challenges if undetected. Physicians may have limited time to regularly examine all residents, particularly those unable to self-report, and may rely on reports from caregivers who are frequently in a good position to detect symptoms quickly. We aimed to identify proxy-completed assessment measures of symptoms experienced by people with dementia, and critically appraise the psychometric properties and applicability for use in long-term care settings by caregivers.
We searched Medline, EMBASE, PsycINFO, CINAHL and ASSIA from inception to 23 June 2015, supplemented by citation and reference searches. The search strategy used a combination of terms: dementia OR long-term care AND assessment AND symptoms (e.g. pain). Studies were included if they evaluated psychometric properties of proxy-completed symptom assessment measures for people with dementia in any setting or those of mixed cognitive abilities residing in long-term care settings. Measures were included if they did not require clinical training, and used proxy-observed behaviors to support assessment in verbally compromised people with dementia. Data were extracted on study setting and sample, measurement properties and psychometric properties. Measures were independently evaluated by two investigators using quality criteria for measurement properties, and evaluated for clinical applicability in long-term settings.
Of the 19,942 studies identified, 40 studies evaluating 32 measures assessing pain (n = 12), oral health (n = 2), multiple neuropsychiatric symptoms (n = 2), depression (n = 8), anxiety (n = 2), psychological wellbeing (n = 4), and discomfort (n = 2) were included. The majority of studies (31/40) were conducted in long-term care settings although none of the neuropsychiatric or anxiety measures were validated in this setting. The pain assessments, PAINAD and PACSLAC had the strongest psychometric evidence. The oral health, discomfort, and three psychological wellbeing measures were validated in this setting but require further psychometric evaluation. Depression measures were poor at detecting depression in this population. All measures require further investigation into agreement, responsiveness and interpretability.
Measures for pain are best developed for this population and setting. All other measures require further validation. A multi-symptom measure to support comprehensive assessment and monitoring in this population is required.
Electronic supplementary material
The online version of this article (doi:10.1186/s12916-016-0582-x) contains supplementary material, which is available to authorized users.
PMCID: PMC4769567  PMID: 26920369
Dementia; Long-term care; Palliative care; Review; Symptom assessment
3.  How integrated are neurology and palliative care services? Results of a multicentre mapping exercise 
BMC Neurology  2016;16:63.
Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services.
The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships.
Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS).
This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.
Electronic supplementary material
The online version of this article (doi:10.1186/s12883-016-0583-6) contains supplementary material, which is available to authorized users.
PMCID: PMC4862117  PMID: 27165157
Neurology; Palliative care; Integrated care; Intervention; Mapping; End of life care; Terminal care; Hospice; Home
4.  Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders 
Age and Ageing  2016;45(6):863-873.
understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom.
transparent expert consultations with health professionals, voluntary sector and carer representatives including a consensus survey; and focus groups with older people and carers were used to generate recommendations for the SIPS model. Discussions focused on three key components of the model: potential benefit of SIPS, timing of delivery and processes of integrated working between specialist palliative care and generalist practitioners. Content and descriptive analysis was employed and findings were integrated across the data sources.
we conducted two expert consultations (n = 63), a consensus survey (n = 42) and three focus groups (n = 17). Potential benefits of SIPS included holistic assessment, opportunity for end of life discussion, symptom management and carer reassurance. Older people and carers advocated early access to SIPS, while other stakeholders proposed delivery based on complex symptom burden. A priority for integrated working was the assignment of a key worker to co-ordinate care, but the assignment criteria remain uncertain.
key stakeholders agree that a model of SIPS for frail older people with non-malignant conditions has potential benefits within community settings, but differ in opinion on the optimal timing and indications for this service. Our findings highlight the importance of consulting all key stakeholders in model development prior to feasibility evaluation.
PMCID: PMC5105822  PMID: 27586857
frail older people; palliative care; primary health care; qualitative research; consensus
5.  ‘I'll be in a safe place’: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care 
BMJ Open  2016;6(11):e012134.
To explore the decisions of people with advanced cancer and their caregivers to seek emergency department (ED) care, and understand the issues that influence the decision-making process.
Cross-sectional qualitative study incorporating semistructured patient and caregiver interviews.
Between December 2014 and July 2015, semistructured interviews were conducted with 18 people with advanced cancer, all of whom had recently attended the ED of a large university teaching hospital located in south-east London; and six of their caregivers. Interviews were audio recorded, transcribed verbatim and analysed using a constant comparative approach. Padgett and Brodsky's modified version of the ‘Behavioral Model of Health Services Use’ was used as a framework to guide the study.
Issues influencing the decision-making process included: (1) disease-related anxiety—those with greater anxiety related to their cancer diagnosis interpreted their symptoms as more severe and/or requiring immediate attention; (2) prior patterns of health-seeking behaviour—at times of crisis participants defaulted to previously used services; (3) feelings of safety and familiarity with the hospital setting—many felt reassured by the presence of healthcare professionals and monitoring of their condition; and, (4) difficulties accessing community healthcare services—especially urgently and/or out-of-hours.
These data provide healthcare professionals and policymakers with a greater understanding of how systems of care may be developed to help reduce ED visits by people with advanced cancer. In particular, our findings suggest that the number of ED visits could be reduced with greater end-of-life symptom support and education, earlier collaboration between oncology and palliative care, and with increased access to community healthcare services.
PMCID: PMC5129048  PMID: 27807085
End-of-life care; Cancer; Health seeking behaviour; Emergency department
6.  Research challenges in palliative and end of life care 
PMCID: PMC4789687  PMID: 26893386
7.  Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014 
BMC Cancer  2016;16:727.
Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer.
Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N = 12,774) were extracted from the death registration database of the Office for National Statistics (ONS).
Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993–2000 to 13 % in 2005–2014, and home deaths fluctuated at around 40 %. Those aged 0–19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23–1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18–0.75, hospice: 0.04–0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76–0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time.
Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.
PMCID: PMC5027635  PMID: 27641492
End of life care; Children and young people; Place of death; Cancer; Palliative care; Inequality
8.  Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study 
Age and Ageing  2016;45(5):668-673.
Background: mortality statistics are a frequently used source of information on deaths in dementia but are limited by concerns over accuracy.
Objective: to investigate the frequency with which clinically diagnosed dementia is recorded on death certificates, including predictive factors.
Methods: a retrospective cohort study assembled using a large mental healthcare database in South London, linked to Office for National Statistics mortality data. People with a clinical diagnosis of dementia, aged 65 or older, who died between 2006 and 2013 were included. The main outcome was death certificate recording of dementia.
Results: in total, 7,115 people were identified. Dementia was recorded on 3,815 (53.6%) death certificates. Frequency of dementia recording increased from 39.9% (2006) to 63.0% (2013) (odds ratio (OR) per year increment 1.11, 95% CI 1.07–1.15). Recording of dementia was more likely if people were older (OR per year increment 1.02, 95% CI 1.01–1.03), and for those who died in care homes (OR 1.89, 95% CI 1.50–2.40) or hospitals (OR 1.14, 95% CI 1.03–1.46) compared with home, and less likely for people with less severe cognitive impairment (OR 0.95, 95% CI 0.94–0.96), and if the diagnosis was Lewy body (OR 0.30, 95% CI 0.15–0.62) or vascular dementia (OR 0.79, 95% CI 0.68–0.93) compared with Alzheimer's disease.
Conclusions: changes in certification practices may have contributed to the rise in recorded prevalence of dementia from mortality data. However, mortality data still considerably underestimate the population burden of dementia. Potential biases affecting recording of dementia need to be taken into account when interpreting mortality data.
PMCID: PMC5027637  PMID: 27146301
older people; dementia; mortality; death certification
9.  Using routine data to improve palliative and end of life care 
BMJ Supportive & Palliative Care  2016;6(3):257-262.
Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.
PMCID: PMC5013160  PMID: 26928173
Routine data; Death registration; Hospital episode statistics; Palliative and end of life care; Individual level health data; Administrative data
10.  The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study 
BMC Cancer  2016;16:427.
Multiple myeloma, the second most common haematological cancer, remains incurable. Its incidence is rising due to population ageing. Despite the impact of the disease and its treatment, not much is known on who is most in need of supportive and palliative care.
This study aimed to (a) assess symptom severity, palliative care concerns and health-related quality of life (HRQOL) in patients with multiple myeloma, and (b) to determine which factors are associated with a lower quality of life. We further wanted to know (c) whether general symptom level has a stronger influence on HRQOL than disease characteristics.
This multi-centre cross-sectional study sampled two cohorts of patients with multiple myeloma from 18 haematological cancer centres in the UK. The Myeloma Patient Outcome Scale (MyPOS) was used to measure symptoms and concerns. Measures of quality of life included the EORTC QLQ-C30, its myeloma module and the EuroQoL EQ-5D. Data were collected on socio-demographic, disease and treatment characteristics and phase of illness. Point prevalence of symptoms and concerns was determined. Multiple regression models quantified relationships between independent factors and the MyPOS, EORTC global quality of life item and EQ5D Index.
Five-hundred-fifty-seven patients, on average 3.5 years (SD: 3.4) post-diagnosis, were recruited. 18.2 % had newly diagnosed disease, 47.9 % were in a treatment-free interval and 32.7 % had relapsed/progressive disease phase. Patients reported a mean of 7.2 symptoms (SD: 3.3) out of 15 potential symptoms. The most common symptoms were pain (72 %), fatigue (88 %) and breathlessness (61 %). Those with relapsed/progressive disease reported the highest mean number of symptoms and the highest overall palliative care concerns (F = 9.56, p < 0.001). Factors associated with high palliative care concerns were a general high symptom level, presence of pain, anxiety, low physical function, younger age, and being in the advanced stages of disease.
Patients with multiple myeloma have a high symptom burden and low HRQOL, in the advanced and the earlier stages of disease. Identification of patients in need of supportive care should focus on assessing patient-reported outcomes such as symptoms and functioning regularly in clinical practice, complementary to traditional biomedical markers.
Electronic supplementary material
The online version of this article (doi:10.1186/s12885-016-2410-2) contains supplementary material, which is available to authorized users.
PMCID: PMC4937527  PMID: 27387201
Multiple myeloma; Health-related quality of life; Palliative Care Outcome Scale; Symptom burden; Quality of life; Palliative care
11.  Constructing Understandings of End-of-Life Care in Europe: A Qualitative Study Involving Cognitive Interviewing with Implications for Cross-National Surveys 
Journal of Palliative Medicine  2011;14(3):343-349.
Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown.
To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey.
An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC.
Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios.
Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe.
PMCID: PMC3118780  PMID: 21306232
12.  Outcomes 'out of africa': the selection and implementation of outcome measures for palliative care in Africa 
BMC Palliative Care  2012;11:1.
End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa.
An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010.
168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use.
This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa.
PMCID: PMC3280153  PMID: 22221932
Palliative care; Online survey; Outcomes; Outcome measurement; Palliative care Outcome Scale (POS); APCA African POS; Research; Africa
13.  Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale 
Palliative Medicine  2015;30(6):599-610.
The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research.
To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire.
Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus.
Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community.
A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement.
Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway.
PMCID: PMC4873725  PMID: 26415736
Patient-reported outcome measures; outcome measurement; cognitive interviewing; palliative care
14.  Of apples and oranges: Lessons learned from the preparation of research protocols for systematic reviews exploring the effectiveness of Specialist Palliative Care 
BMC Palliative Care  2016;15:43.
Agreed terminology used in systematic reviews of the effectiveness of specialist palliative care ((S)PC)) is required to ensure consistency and usability and to help guide future similar reviews and the design of clinical trials. During the preparation of protocols for two separate systematic reviews that aimed to assess the effectiveness of SPC, two international research groups collaborated to ensure a high degree of methodological consensus and clarity between reviews. During the collaboration, it became evident that close attention is needed to (i) avoid ambiguity in the definition of advanced illness, (ii) capture the specialist expertise and prerequisites for SPC interventions, and (iii) the multi-professional and multi-dimensional nature of PC. Also, (iv) the exclusion of relevant studies or (v) impracticality of meta-analyses of the obtained data must be avoided.
The aim of this article is to present the core issues of the discussion to help future research groups to easily identify potential pitfalls and methodologic necessities.
Core issue discussion
Core issues that arose from the discussion are presented along the research questions according to the PICO process:
Population (P): Authors should refer to existing definitions of PC to ensure that, even if the review aims to investigate specific patients (e.g. cancer patients), it is important to make clear that PC is applicable for all life-limiting diseases and not limited to end-of-life or cancer.
Intervention (I): PC is a core responsibility of all disciplines (general PC). In contrast, SPC demands further training and expertise. Therefore, core tenets of SPC interventions are that they are (i) multi-professional and (ii) aim at the multi-dimensional nature of suffering.
Outcome (O): The main goal of PC is multi-dimensional (quality of life, suffering or distress). Yet, meta-analysis may be complex to conduct due to the heterogeneity of the multi-dimensional outcomes. Therefore, the assessment of uni-dimensional measures such as pain can also provide clinically relevant information that is easier to obtain.
Discussion and conclusion
Recommendations for future systematic reviews and clinical trials include: (i) Appraise the experience of other research groups who have produced similar systematic reviews or clinical trials.
(ii) Include studies that meet the multi-professional and multi-dimensional nature of PC and the specialization requirements for SPC.
(iii) Thoroughly weigh relevance and practicability of the primary outcome. Multi-dimensional tools such as quality-of-life questionnaires assess the different dimensions of suffering (the true scope of PC), but uni-dimensional measures such as pain are easier to assess in meta-analyses.
PMCID: PMC4836194  PMID: 27091056
Palliative care; Systematic review; Clinical trial; Specialist palliative care; Early palliative care
15.  The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial 
Trials  2016;17:185.
Breathlessness is the most common and intrusive symptom of advanced non-malignant respiratory and cardiac conditions. The Breathlessness Intervention Service (BIS) is a multi-disciplinary complex intervention, theoretically underpinned by a palliative care approach, utilising evidence-based non-pharmacological and pharmacological interventions to support patients with advanced disease in managing their breathlessness. Having published the effectiveness and cost effectiveness of BIS for patients with advanced cancer and their carers, we sought to establish its effectiveness, and cost effectiveness, in advanced non-malignant conditions.
This was a single-centre Phase III fast-track single-blind mixed method RCT of BIS versus standard care for breathless patients with non-malignant conditions and their carers. Randomisation was to one of two groups (randomly permuted blocks). Eighty-seven patients referred to BIS were randomised (intervention arm n = 44; control arm n = 43 received BIS after four-week wait); 79 (91 %) completed to key outcome measurement. The primary outcome measure was 0–10 numeric rating scale for patient distress due to breathlessness at four weeks. Secondary outcome measures were Chronic Respiratory Questionnaire, Hospital Anxiety and Depression Scale, Client Service Receipt Inventory, EQ-5D and topic-guided interviews.
Qualitative analyses showed the positive impact of BIS on patients with non-malignant conditions and their carers; quantitative analyses showed a non-significant greater reduction in the primary outcome (‘distress due to breathlessness’), when compared to standard care, of –0.24 (95 % CI: –1.30, 0.82). BIS resulted in extra mean costs of £799, reducing to £100 when outliers were excluded; neither difference was statistically significant. The quantitative findings contrasted with those previously reported for patients with cancer and their carers, which showed BIS to be both clinically and cost effective. For patients with non-malignant conditions there was a notable trend of improvement over both trial arms to the key measurement point; participants may have experienced a therapeutic effect from the research interviews, diluting the intervention’s impact.
BIS had a statistically non-significant effect for patients with non-malignant conditions, and slightly increased service costs, but had a qualitatively positive impact consistent with findings for advanced cancer. Trials of palliative care interventions should consider multiple, mixed method, primary outcomes and ensure that protocols limit potential contaminating therapeutic effects in study designs.
Trial registration
Current Controlled Trials ISRCTN04119516 (December 2008); NCT00678405 (May 2008)
Electronic supplementary material
The online version of this article (doi:10.1186/s13063-016-1304-6) contains supplementary material, which is available to authorized users.
PMCID: PMC4820876  PMID: 27044249
Breathlessness; Non-malignant disease; Advanced disease; Randomised controlled trial; Complex intervention; Mixed methods; Chronic obstructive pulmonary disease; Palliative care
16.  Patients’ experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey 
Palliative Medicine  2015;30(3):313-322.
We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients’ experiences of the service and identify the aspects valued.
We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questionnaire to self-complete covering experience, composition, effectiveness of the BSS and about participation in research. Data were analysed using descriptive statistics and thematic analysis of free text comments.
Of the 70 postal questionnaires sent out, 25 (36%) returned. A total of 21 (84% (95% confidence interval: 69%–98%)) responding patients reported that they definitely found the breathlessness support service helpful and 13 (52% (95% confidence interval: 32%–72%)) rated the breathlessness support service as excellent. A total of 21 (84% (95% confidence interval: 69%–98%)) patients reported that the breathlessness support service helped with their management of their breathlessness along with additional symptoms and activities (e.g. mood and mobility). Four key themes were identified: (1) personalised care, (2) caring nature of the staff, (3) importance of patient education to empower patients and (4) effectiveness of context-specific breathlessness interventions. These were specific aspects that patients valued.
Patients’ satisfaction with the breathlessness support service was high, and identified as important to this was a combination of personalised care, nature of staff, education and empowerment, and use of specific interventions. These components would be important in any future breathlessness service.
PMCID: PMC4778380  PMID: 26311570
Palliative care; breathlessness support service; breathlessness; chronic obstructive; pulmonary disease; cancer
17.  Validity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients 
BMC Palliative Care  2016;15:23.
There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care.
Phase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer patients on admission to 8 inpatient hospices and 7 home-based teams were asked to complete the POS, the EORTC QLQ-C15-PAL and the FACIT-Sp (T0), to assess internal consistency, convergent and divergent validity. After 6 days (T1) patients and staff completed the POS to assess responsiveness to change (T1-T0), and agreement between self-assessed POS and POS completed by the staff. Finally, we asked hospices an assessment 24–48 h after T1 to assess its reliability (test re-test analysis).
Phase I: 209 completed POS questionnaires and 29 cognitive interviews were assessed, revisions made and one item substituted. Phase II: 295 consecutive patients admitted to 15 PCTs were approached, 175 (59.3 %) were eligible, and 150 (85.7 %) consented. Consent was limited by the severity of illness in 40 % patients. We found good convergent validity, with strong and moderate correlations (r ranged 0.5–0.8) between similar items from the POS, the QLQ-C15-PAL and the FACIT-Sp. As hypothesised, the physical function subscale of QLQ-C15-PAL was not correlated with any POS item (r ranged -0.16–0.02). We found acceptable to good test re-test reliability in both versions for 6 items. We found significant clinical improvements during the first week of palliative care in 7/10 items assessed-pain, other symptoms, patient and family anxiety, information, feeling at peace and wasted time.
Both the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected significant clinical improvements during palliative care, at a time when patients are usually expected to deteriorate. These results suggest that there is room for substantial improvement in the management of patients with advanced disease, across all key domains-symptoms, psychological, information, social and spiritual.
Electronic supplementary material
The online version of this article (doi:10.1186/s12904-016-0095-6) contains supplementary material, which is available to authorized users.
PMCID: PMC4768331  PMID: 26920738
Palliative care; Outcomes; Outcome assessment; Outcome measurement; Palliative care outcome scale; POS
18.  Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care 
PLoS ONE  2016;11(1):e0146134.
Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey.
Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants.
The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920).
Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.
PMCID: PMC4706352  PMID: 26745379
19.  Home care by general practitioners for cancer patients in the last 3 months of life: An epidemiological study of quality and associated factors 
Palliative Medicine  2016;30(1):64-74.
Stronger generalist end-of-life care at home for people with cancer is called for but the quality of end-of-life care delivered by general practitioners has been questioned.
To determine the degree of and factors associated with bereaved relatives’ satisfaction with home end-of-life care delivered by general practitioners to cancer patients.
Population-based mortality followback survey.
Bereaved relatives of people who died of cancer in London, United Kingdom (identified from death registrations in 2009–2010), were invited to complete a postal questionnaire surveying the deceased’s final 3 months of life.
Questionnaires were completed for 596 decedents of whom 548 spent at least 1 day at home in the last 3 months of life. Of the respondents, 55% (95% confidence interval: 51%–59%) reported excellent/very good home care by general practitioners, compared with 78% (95% confidence interval: 74%–82%) for specialist palliative care providers and 68% (95% confidence interval: 64%–73%) for district/community/private nurses. The odds of high satisfaction (excellent/very good) with end-of-life care by general practitioners doubled if general practitioners made three or more compared with one or no home visits in the patient’s last 3 months of life (adjusted odds ratio: 2.54 (95% confidence interval: 1.52–4.24)) and halved if the patient died at hospital rather than at home (adjusted odds ratio: 0.55 (95% confidence interval: 0.31–0.998)).
There is considerable room for improvement in the satisfaction with home care provided by general practitioners to terminally ill cancer patients. Ensuring an adequate offer of home visits by general practitioners may help to achieve this goal.
PMCID: PMC4681160  PMID: 26036688
Cancer; palliative care; home care services; general practitioners; satisfaction with care
20.  The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993–2012 
Palliative Medicine  2016;30(1):45-53.
Studies in the United Kingdom and elsewhere have suggested inequality of hospice provision with respect to factors such as age, diagnosis and socio-economic position. How this has changed over time is unknown.
To describe the factors associated with inpatient hospice death in England and examine how these have changed over time.
Population-based study. Multivariable Poisson regression compared 1998–2002, 2003–2007 and 2008–2012, with 1993–1997. Explanatory variables included individual factors (age, gender, marital status, underlying cause of death) and area-based measures of deprivation.
Adults aged 25 years and over who died in inpatient hospice units in England between 1993 and 2002 (n = 446,615).
The annual number of hospice deaths increased from 17,440 in 1993 to 26,032 in 2012, accounting for 3.4% of all deaths in 1993 and 6.0% in 2012. A total of 50.6% of hospice decedents were men; the mean age was 69.9 (standard deviation: 12.4) years. The likelihood of hospice decedents being in the oldest age group (>85 years) increased over time (proportion ratio: 1.43, 95% confidence interval: 1.39 to 1.48 for 2008–2012 compared to 1993–1997). Just 5.2% of all hospice decedents had non-cancer diagnoses, though the likelihood of non-cancer conditions increased over time (proportion ratio: 1.41, 95% confidence interval: 1.37 to 1.46 for 2008–2012 compared to 1993–1997). The likelihood of hospice decedents being resident in the least deprived quintile increased over time (proportion ratio: 1.25, 95% confidence interval: 1.22 to 1.29 for 2008–2012 compared to 1993–1997).
The increase in non-cancer conditions among hospice decedents is encouraging although absolute numbers remain very small. Deprivation trends are concerning and require further exploration.
PMCID: PMC4681161  PMID: 25991729
Palliative care; hospices; death; terminal care
21.  Results of a transparent expert consultation on patient and public involvement in palliative care research 
Palliative Medicine  2015;29(10):939-949.
Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking.
To determine an optimal user-involvement model for palliative care research.
We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings.
Participants involved in palliative care research were invited to a global research institute, UK.
A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility.
For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research.
PMCID: PMC4668913  PMID: 25931336
Consumer participation; palliative care; research design; consumer-based participatory research; group processes; hospice care
22.  How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design 
BMC Medicine  2015;13:263.
Clinicians request guidance to aid the routine use and interpretation of Patient Reported Outcome Measures (PROMs), but tools are lacking. We aimed to develop a Clinical Decision Support Tool (CDST) focused on information needs, family anxiety, depression, and breathlessness (measured using the Palliative care Outcome Scale (POS)) and related PROM implementation guidance.
We drafted recommendations based on findings from systematic literature searches. In a modified online Delphi study, 38 experts from 12 countries with different professional backgrounds, including four patient/carer representatives, were invited to rate the appropriateness of these recommendations for problems of varying severity in the CDST. The quality of evidence was added for each recommendation, and the final draft CDST reappraised by the experts. The accompanying implementation guidance was built on data from literature scoping with expert revision (n = 11 invited experts).
The systematic literature searches identified over 560 potential references, of which 43 met the inclusion criteria. Two Delphi rounds (response rate 66 % and 62 %; n = 25 and 23) found that good patient care, psychosocial support and empathy, and open communication were central to supporting patients and families affected by all POS concerns as a core requirement. Assessment was recommended for increasing problems (i.e. scores), followed by non-pharmacological interventions and for breathlessness and depression, pharmacological interventions. Accompanying PROM implementation guidance was built based on the 8-step International Society for Quality of Life Research framework, as revised by nine (response rate 82 %) experts.
This CDST provides a straightforward guide to help support clinical care and improve evidence-based outcomes for patients with progressive illness and their families, addressing four areas of clinical uncertainty. Recommendations should be used flexibly, alongside skilled individual clinical assessment and knowledge, taking into account patients’ and families’ individual preferences, circumstances, and resources. The CDST is provided with accompanying implementation guidance to facilitate PROM use and is ready for further development and evaluation.
Electronic supplementary material
The online version of this article (doi:10.1186/s12916-015-0449-6) contains supplementary material, which is available to authorized users.
PMCID: PMC4604738  PMID: 26464185
Clinical decision support tools; Delphi studies; Implementation; Palliative care; Palliative care outcome scale (POS); Patient reported outcome measures
23.  Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study 
BMC Medicine  2015;13:235.
Studies show that most patients with advanced cancer prefer to die at home. However, not all have equal chances and the evidence is unclear on whether dying at home is better. This study aims to determine the association between place of death, health services used, and pain, feeling at peace, and grief intensity.
Mortality follow-back study of 352 cancer patients who died in hospital (n = 177) or at home (n = 175) in London, UK. Bereaved relatives identified from death registrations completed a questionnaire including validated measures of patient’s pain and peace in the last week of life and their own grief intensity. We determined factors influencing death at home, and associations between place of death and pain, peace, and grief.
Where people died was, for most (80 %), the place where they lived during their last week of life. Four factors explained >91 % of home deaths: patient’s preference, relative’s preference, home palliative care, or district/community nursing. The propensity of death at home also increased when the relative was aware of incurability and the patient discussed his/her preferences with family. Dying in hospital was associated with more hospital days, fewer general practitioner (GP) home visits, and fewer days taken off work by relatives. Adjusting for confounders, patients who died at home experienced similar pain levels but more peace in their last week of life (ordered log odds ratio 0.69, P = 0.007). Grief was less intense for their relatives than for those of patients who died in hospital (β, –0.15 around time of death and –0.14 at questionnaire completion, P = 0.02).
The study suggests that dying at home is better than hospital for peace and grief, but requires a discussion of preferences, GP home visits, and relatives to be given time off work.
Trial registration
National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.
Electronic supplementary material
The online version of this article (doi:10.1186/s12916-015-0466-5) contains supplementary material, which is available to authorized users.
PMCID: PMC4599664  PMID: 26449231
Bereavement; Health care surveys; Home care services; Neoplasms; Pain; Palliative care
24.  Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle 
Palliative Medicine  2015;29(9):797-807.
Clinical uncertainty is emotionally challenging for patients and carers and creates additional pressures for those clinicians in acute hospitals. The AMBER care bundle was designed to improve care for patients identified as clinically unstable, deteriorating, with limited reversibility and at risk of dying in the next 1–2 months.
To examine the experience of care supported by the AMBER care bundle compared to standard care in the context of clinical uncertainty, deterioration and limited reversibility.
A comparative observational mixed-methods study using semi-structured qualitative interviews and a followback survey.
Three large London acute tertiary National Health Service hospitals. Nineteen interviews with 23 patients and carers (10 supported by AMBER care bundle and 9 standard care). Surveys completed by next of kin of 95 deceased patients (59 AMBER care bundle and 36 standard care).
The AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients (χ2 = 4.09, p = 0.04), higher awareness of their prognosis by patients (χ2 = 4.29, p = 0.04) and lower clarity in the information received about their condition (χ2 = 6.26, p = 0.04). Although the consistency and quality of communication were not different between the two groups, those supported by the AMBER care bundle described more unresolved concerns about caring for someone at home.
Awareness of prognosis appears to be higher among patients supported by the AMBER care bundle, but in this small study this was not translated into higher quality communication, and information was judged less easy to understand. Adequately powered comparative evaluation is urgently needed.
PMCID: PMC4572938  PMID: 25829443
Palliative care; terminal care; end-of-life care; communication; evaluation; satisfaction; hospital care; home care
25.  ‘It doesn't do the care for you': a qualitative study of health care professionals' perceptions of the benefits and harms of integrated care pathways for end of life care 
BMJ Open  2015;5(9):e008242.
To understand healthcare professionals’ perceptions of the benefits and potential harms of integrated care pathways for end-of-life care, to inform the development of future interventions that aim to improve care of the dying.
Qualitative interview study with maximum variation sampling and thematic analysis.
25 healthcare professionals, including doctors, nurses and allied health professionals, interviewed in 2009.
A 950-bed South London teaching hospital.
4 main themes emerged, each including 2 subthemes. Participants were divided between (1) those who described mainly the benefits of integrated care pathways, and (2) those who talked about potential harms. Benefits focused on processes of care, for example, clearer, consistent and comprehensive actions. The recipients of these benefits were staff members themselves, particularly juniors. For others, this perceived clarity was interpreted as of potential harm to patients, where over-reliance on paperwork lead to prescriptive, less thoughtful care, and an absolution from decision-making. Independent of their effects on patient care, integrated care pathways for dying had (3) a symbolic value: they legitimised death as a potential outcome and were used as a signal that the focus of care had changed. However, (4) a weak infrastructure, including scanty education and training in end-of-life care and a poor evidence base, that appeared to undermine the foundations on which the Liverpool Care Pathway was built.
The potential harms of integrated care pathways for the dying identified in this study were reminiscent of criticisms subsequently published by the Neuberger review. These data highlight: (1) the importance of collecting, reporting and using qualitative data when developing and evaluating complex interventions; (2) that comprehensive education and training in palliative care is critical for the success of any new intervention; (3) the need for future interventions to be grounded in patient-centred outcomes, not just processes of care.
PMCID: PMC4577969  PMID: 26369795
GENERAL MEDICINE (see Internal Medicine)

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