Meditative movement for breathlessness in advanced COPD or cancer: a systematic review and meta-analysis.

The effect of meditative movement, which includes yoga, tai chi and qi gong, on breathlessness in advanced disease is unknown. This systematic review aims to comprehensively assess the evidence on the effect of meditative movement on breathlessness (primary outcome), health-related quality of life, exercise capacity, functional performance and psychological symptoms (secondary outcomes) in advanced disease. 11 English and Chinese language databases were searched for relevant trials. Risk of bias was assessed using the Cochrane tool. Standardised mean differences (SMDs) with 95% confidence intervals were computed. 17 trials with 1125 participants (n=815 COPD, n=310 cancer), all with unclear or high risk of bias, were included. Pooled estimates (14 studies, n=671) showed no statistically significant difference in breathlessness between meditative movement and control interventions (SMD (95% CI) 0.10 (-0.15-0.34); Chi2=30.11; I2=57%; p=0.45), irrespective of comparator, intervention or disease category. Similar results were observed for health-related quality of life and exercise capacity. It was not possible to perform a meta-analysis for functional performance and psychological symptoms. In conclusion, in people with advanced COPD or cancer, meditative movement does not improve breathlessness, health-related quality of life or exercise capacity. Methodological limitations lead to low levels of certainty in the results.

Optimising breathlessness triggered services for older people with advanced diseases: a multicentre economic study (OPTBreathe).

BACKGROUND: In advanced disease, breathlessness becomes severe, increasing health services use. Breathlessness triggered services demonstrate effectiveness in trials and meta-analyses but lack health economic assessment. METHODS: Our economic study included a discrete choice experiment (DCE), followed by a cost-effectiveness analysis modelling. The DCE comprised face-to-face interviews with older patients with chronic breathlessness and their carers across nine UK centres. Conditional logistic regression analysis of DCE data determined the preferences (or not, indicated by negative ß coefficients) for service attributes. Economic modelling estimated the costs and quality-adjusted life years (QALYs) over 5 years. FINDINGS: The DCE recruited 190 patients and 68 carers. Offering breathlessness services in person from general practitioner (GP) surgeries was not preferred (ß=-0.30, 95% CI -0.40 to -0.21); hospital outpatient clinics (0.16, 0.06 to 0.25) or via home visits (0.15, 0.06 to 0.24) were preferred. Inperson services with comprehensive treatment review (0.15, 0.07 to 0.21) and holistic support (0.19, 0.07 to 0.31) were preferred to those without. Cost-effectiveness analysis found the most and the least preferred models of breathlessness services were cost-effective compared with usual care. The most preferred service had £5719 lower costs (95% CI -6043 to 5395), with 0.004 (95% CI -0.003 to 0.011) QALY benefits per patient. Uptake was higher when attributes were tailored to individual preferences (86% vs 40%). CONCLUSION: Breathlessness services are cost-effective compared with usual care for health and social care, giving cost savings and better quality of life. Uptake of breathlessness services is higher when service attributes are individually tailored.

Towards patient-centred cancer care: cross-cultural validity and responsiveness of the Turkish Integrated Palliative care Outcome Scale.

BACKGROUND: A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients. METHODS: The IPOS (English) patient-reported measure was translated into Turkish following published guidelines including, 2 independent forward, 2 independent blind backward translations, expert panel review by 7 members and field testing with 11 cognitive interviews (5 patients and 6 specialists) and final approval of the copyright holder. Consecutive cancer patients (n = 234) seen by the community palliative care services were recruited from Help Those with Cancer Society (KHYD); of those 82 were followed-up. The instrument was administered by personal interview. Confirmatory Factor Analysis was used to validate the factor structure of Turkish IPOS. Internal consistency reliability of the subscales was evaluated by Cronbach's alpha and Intraclass Correlation Coefficient respectively. Validity was assessed by calculating Pearson's correlation coefficient (r) between Turkish IPOS scores and Turkish version of EQ-5D-3L - a validated generic measure of health status developed by the EuroQol Group. RESULTS: Turkish IPOS is conceptually and semantically equivalent to the English version and linguistically valid. The CFA was inconclusive for the three factor structure due to low sample size, as the SRMR and CFI tests only approached the defined minimums warranting further investigation. There were low levels of missing values, and no ceiling or floor effects. The Physical (α = 0.91) and the Social and Quality of Care Issues (α = 0.75) sub-scales showed good internal consistencies, however Emotional sub-scale showed poor internal consistency (α = 0.64). The reliability of the Physical (ICC = 0.51, 0.45-0.56 95% CI) and Social Quality of Care Issues (ICC = 0.50, 0.42-0.57 95% CI) were moderate. Poor internal consistency (α =0.64) and reliability (ICC = 0.31, 0.24-0.39, 95% CI) was obtained for Emotional Subscale. Construct validity was evidenced through significant correlations in the predicted directions and strength with EQ-5D. Turkish IPOS showed higher needs and concerns in participants at more advanced stages than those at earlier stages of cancer. The standardized response mean (SRM) of - 0.94 suggested large internal responsiveness to clinical change. CONCLUSION: Turkish IPOS is a clear, relevant, acceptable measure and responsive to the needs and concerns of cancer patients, observing regional differences, it may have implications for use in other Turkish speaking communities. Future studies are needed to clarify the factor structure, assess its external responsiveness and to improve the properties of its Emotional subscale.

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

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; I2 = 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; I2 = 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; I2 = 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; I2 = 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; I2 = 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.

Determining the prevalence of palliative needs and exploring screening accuracy of depression and anxiety items of the integrated palliative care outcome scale - a multi-centre study.

BACKGROUND: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a "normal event" in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs. METHODS: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. INCLUSION CRITERIA: ≥18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. EXCLUSION CRITERIA: patient in distress ("unable to converse for a period of time"), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale. RESULTS: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%. CONCLUSIONS: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.

Standards, Guidelines, and Quality Measures for Successful Specialty Palliative Care Integration Into Oncology: Current Approaches and Future Directions.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

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

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.

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

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.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem.

BACKGROUND: Assessment of people with dementia is challenging; with undetected and under treated symptoms and concerns resulting in avoidable distress, and few evidence-based interventions to support this. We aimed to understand the mechanisms of action of a measure to support comprehensive assessment of people with dementia in care homes; and its acceptability, feasibility, and implementation requirements. METHODS: A qualitative study with an embedded quantitative component in three residential care homes, underpinned by an initial theoretical model of mechanisms of action. The measure, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), was introduced into the care of residents with dementia for 12 weeks. Qualitative data comprised focus groups and semi-structured interviews with family, care home staff, general practitioners and district nurses; and non-participant observations. Quantitative data comprised IPOS-Dem data. Directed content analysis for qualitative data, and descriptive statistics were used for quantitative data. FINDINGS: Key mechanisms of action were: improved observation and awareness of residents, collaborative assessment, comprehensive 'picture of the person', systematic record keeping, improved review and monitoring, care planning and changes to care provision, and facilitated multi-agency communication. Potential benefit included improved symptom management, improved comprehensive care, and increased family empowerment and engagement. IPOS-Dem was found to be acceptable and feasible. It was perceived as quick and easy to use, with proportion of overall missing data decreasing from 2.1% to 1.1% from baseline to final time points. 'Trust' in the measure was important; and leadership essential to ensure integration into care processes. CONCLUSIONS: In a population with complex care needs, with challenges to assessment and barriers to multi-agency working, a measure introduced into routine care is feasible and acceptable, and supports assessment and management of symptoms and concerns. A refined theoretical model demonstrating the likely mechanisms of action was developed. Further evaluation is required to test its effectiveness.

Integrating palliative care into neurology services: what do the professionals say?

OBJECTIVES: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service. METHODS: Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms. RESULTS: 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being 'good/excellent' by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being 'poor/none'. Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness. CONCLUSIONS: Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this. TRIAL REGISTRATION NUMBER: ISRCTN18337380; Pre-results.

Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.

BACKGROUND: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients' needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. AIM: To explore whether and how a palliative care-specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients' experience of patient-centred care in nurse-led chronic heart failure disease management clinics. DESIGN: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. SETTING/PARTICIPANTS: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II-IV. Nurses who led these clinics were eligible for inclusion. RESULTS: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients' symptoms and concerns, facilitating patient-nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. CONCLUSION: This Integrated Palliative care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease.

BACKGROUND: This review is an update of a previously published review in the Cochrane Database of Systematic Reviews Issue 1, 2013 on Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease.Patients with advanced progressive disease often experience muscle weakness, which can impact adversely on their ability to be independent and their quality of life. In those patients who are unable or unwilling to undertake whole-body exercise, neuromuscular electrical stimulation (NMES) may be an alternative treatment to enhance lower limb muscle strength. Programmes of NMES appear to be acceptable to patients and have led to improvements in muscle function, exercise capacity, and quality of life. However, estimates regarding the effectiveness of NMES based on individual studies lack power and precision. OBJECTIVES: Primary objective: to evaluate the effectiveness of NMES on quadriceps muscle strength in adults with advanced disease. Secondary objectives: to examine the safety and acceptability of NMES, and its effect on peripheral muscle function (strength or endurance), muscle mass, exercise capacity, breathlessness, and health-related quality of life. SEARCH METHODS: We identified studies from searches of the Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews (CDSR), and Database of Abstracts of Reviews of Effects (DARE) (the Cochrane Library), MEDLINE (OVID), Embase (OVID), CINAHL (EBSCO), and PsycINFO (OVID) databases to January 2016; citation searches, conference proceedings, and previous systematic reviews. SELECTION CRITERIA: We included randomised controlled trials in adults with advanced chronic respiratory disease, chronic heart failure, cancer, or HIV/AIDS comparing a programme of NMES as a sole or adjunct intervention to no treatment, placebo NMES, or an active control. We imposed no language restriction. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data on study design, participants, interventions, and outcomes. We assessed risk of bias using the Cochrane 'Risk of bias' tool. We calculated mean differences (MD) or standardised mean differences (SMD) between intervention and control groups for outcomes with sufficient data; for other outcomes we described findings from individual studies. We assessed the evidence using GRADE and created a 'Summary of findings' table. MAIN RESULTS: Eighteen studies (20 reports) involving a total of 933 participants with COPD, chronic respiratory disease, chronic heart failure, and/or thoracic cancer met the inclusion criteria for this update, an additional seven studies since the previous version of this review. All but one study that compared NMES to resistance training compared a programme of NMES to no treatment or placebo NMES. Most studies were conducted in a single centre and had a risk of bias arising from a lack of participant or assessor blinding and small study size. The quality of the evidence using GRADE comparing NMES to control was low for quadriceps muscle strength, moderate for occurrence of adverse events, and very low to low for all other secondary outcomes. We downgraded the quality of evidence ratings predominantly due to inconsistency among study findings and imprecision regarding estimates of effect. The included studies reported no serious adverse events and a low incidence of muscle soreness following NMES.NMES led to a statistically significant improvement in quadriceps muscle strength as compared to the control (12 studies; 781 participants; SMD 0.53, 95% confidence interval (CI) 0.19 to 0.87), equating to a difference of approximately 1.1 kg. An increase in muscle mass was also observed following NMES, though the observable effect appeared dependent on the assessment modality used (eight studies, 314 participants). Across tests of exercise performance, mean differences compared to control were statistically significant for the 6-minute walk test (seven studies; 317 participants; 35 m, 95% CI 14 to 56), but not for the incremental shuttle walk test (three studies; 434 participants; 9 m, 95% CI -35 to 52), endurance shuttle walk test (four studies; 452 participants; 64 m, 95% CI -18 to 146), or for cardiopulmonary exercise testing with cycle ergometry (six studies; 141 participants; 45 mL/minute, 95% CI -7 to 97). Limited data were available for other secondary outcomes, and we could not determine the most beneficial type of NMES programme. AUTHORS' CONCLUSIONS: The overall conclusions have not changed from the last publication of this review, although we have included more data, new analyses, and an assessment of the quality of the evidence using the GRADE approach. NMES may be an effective treatment for muscle weakness in adults with advanced progressive disease, and could be considered as an exercise treatment for use within rehabilitation programmes. Further research is very likely to have an important impact on our confidence in the estimate of effect and may change the estimate. We recommend further research to understand the role of NMES as a component of, and in relation to, existing rehabilitation approaches. For example, studies may consider examining NMES as an adjuvant treatment to enhance the strengthening effect of programmes, or support patients with muscle weakness who have difficulty engaging with existing services.

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.

BACKGROUND: 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. METHOD: 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. FINDINGS: 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. INTERPRETATION: 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.

Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: a randomised double-blind, placebo-controlled trial.

BACKGROUND: Skeletal muscle dysfunction and exercise intolerance are common in severe chronic obstructive pulmonary disease (COPD). We assessed the effectiveness of neuromuscular electrical stimulation (NMES) as a home-based exercise therapy. METHODS: In this double-blind, placebo-controlled trial, undertaken across three UK National Health Service sites, we randomly assigned (1:1) adults with COPD, a forced expiratory volume in 1 s (FEV1) less than 50% predicted, and incapacitating breathlessness (Medical Research Council dyspnoea scale ≥4) to receive active or placebo NMES, daily over a 6-week period. Randomisation was by an independent system using minimisation to balance age, GOLD stage, and quadriceps strength. Participants and outcome assessors were masked to group allocation. The primary endpoint was change in 6-min walk test (6MWT) distance at 6 weeks. Analysis was by intention to treat. The trial was registered as ISRCTN15985261 and is now closed. FINDINGS: Between June 29, 2012, and July 4, 2014, we enrolled 73 participants, of whom 52 participants were randomly assigned; 25 to receive active NMES and 27 to placebo NMES. Change in 6MWT distance was greater in the active NMES group (mean 29·9 [95% CI 8·9 to 51·0]) compared with in the placebo group (-5·7 [-19·9 to 8·4]; mean difference at 6 weeks 35·7 m [95% CI 10·5 to 60·9]; p=0·005). Sensitivity analyses for complete-cases and adjustment for baseline values showed similar results. 6 weeks after stopping the intervention the effect waned (7·3 m [95% CI -32·5 to 47·0]; p=0·50). The proportion of participants who had adverse events was similar between groups (five [20%] in the active NMES group and nine [33%] in the placebo group). Two participants, one from each group, reported persistent erythema, which was considered to be possibly related to NMES and the use of adhesive electrodes. INTERPRETATION: NMES improves functional exercise capacity in patients with severe COPD by enhancing quadriceps muscle mass and function. These data support the use of NMES in the management of patients unable to engage with conventional pulmonary rehabilitation. More work is needed to study how to maintain the effect. FUNDING: National Institute for Health Research.

Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

BACKGROUND: 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. DESIGN: 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. RESULTS: 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. CONCLUSION: 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.

An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial.

BACKGROUND: Breathlessness is a common and distressing symptom, which increases in many diseases as they progress and is difficult to manage. We assessed the effectiveness of early palliative care integrated with respiratory services for patients with advanced disease and refractory breathlessness. METHODS: In this single-blind randomised trial, we enrolled consecutive adults with refractory breathlessness and advanced disease from three large teaching hospitals and via general practitioners in South London. We randomly allocated (1:1) patients to receive either a breathlessness support service or usual care. Randomisation was computer generated centrally by the independent Clinical Trials Unit in a 1:1 ratio, by minimisation to balance four potential confounders: cancer versus non-cancer, breathlessness severity, presence of an informal caregiver, and ethnicity. The breathlessness support service was a short-term, single point of access service integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. Research interviewers were masked as to which patients were in the treatment group. Our primary outcome was patient-reported breathlessness mastery, a quality of life domain in the Chronic Respiratory Disease Questionnaire, at 6 weeks. All analyses were by intention to treat. Survival was a safety endpoint. This trial is registered with ClinicalTrials.gov, number NCT01165034. FINDINGS: Between Oct 22, 2010 and Sept 28, 2012, 105 consenting patients were randomly assigned (53 to breathlessness support service and 52 to usual care). 83 of 105 (78%) patients completed the assessment at week 6. Mastery in the breathlessness support service group improved compared with the control (mean difference 0·58, 95% CI 0·01-1·15, p=0·048; effect size 0·44). Sensitivity analysis found similar results. Survival rate from randomisation to 6 months was better in the breathlessness support service group than in the control group (50 of 53 [94%] vs 39 of 52 [75%]) and in overall survival (generalised Wilcoxon 3·90, p=0·048). Survival differences were significant for patients with chronic obstructive pulmonary disease and interstitial lung disease but not cancer. INTERPRETATION: The breathlessness support service improved breathlessness mastery. Our findings provide robust evidence to support the early integration of palliative care for patients with diseases other than cancer and breathlessness as well as those with cancer. The improvement in survival requires further investigation. FUNDING: UK National Institute for Health Research (NIHR) and Cicely Saunders International.

Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study.

BACKGROUND: Global health investment has reduced HIV mortality and transmission. However, little is known of patient-reported outcomes alongside ART rollout. This study aimed to measure wellbeing using patient-reported outcome measures (PROMS) among outpatients at PEPFAR-funded facilities. METHODS: In a multicentre 2 country cross-sectional study, adults attending 12 facilities in Kenya and Uganda gave self-reported data on quality of life (physical and mental wellbeing dimensions), functional and a measure of multidimensional problems (physical, psychological, social and spiritual). RESULTS: Among the 1,337 participants, multidimensional problems were more common in psychological, spiritual and social domains than in physical. In multivariable analysis using GEE to adjust for facility effect, the mental health subscale of quality of life was lower for people with limited functional status (B = -5.27, 95% CI -5.99, 1. -4.56 p < 0.001) and higher for wealthier people (B = 0.91, 95% CI 0.48, 1.33, p < 0.001). The physical health subscale of quality of life was lower for those with limited functional status (B = -8.58, 95% CI -9.46 to -7.70, p < 0.001) and those who had a caregiver present (B = -1.97, 95% CI -3.72 to -0.23, p = 0.027), higher for wealthier people (B = 1.14, 95% CI 0.65, 1.64, p < 0.001), and positively associated with CD4 count (B = 1.61, 95% CI 1.08-2.14, p < 0.001). Multidimensional problems were more burdensome for people with limited functional status (B = -2.06, 95% CI -2.46 to -1.66, p < 0.001), and less burdensome with more education (B = 0.63, 95% CI 0.25-1.00, p = 0.001) or ART use (B = 0.94, 95% CI 0.34-1.53, p = 0.002). CONCLUSIONS: Multidimensional problems are highly prevalent, and worse with declining function. Importantly, ART use does not appear to be protective for self-reported physical and mental dimensions of quality of life. Assessment and management of self-reported wellbeing must form part of HIV care and treatment services to ensure maximum benefit from ART investment.

Palliative care-related self-report problems among cancer patients in East Africa: a two-country study.

PURPOSE: Palliative care-related problems have not been measured in Africa in line with the WHO definition. This study aimed to measure the three-day period intensity of multidimensional problems (physical, psychological, social, and spiritual) among advanced cancer patients in Kenya and Uganda. METHODS: Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS). RESULTS: Among 210 respondents, more than half had an underlying HIV diagnosis (51.9 %). The worst ranked POS items were pain and information. In three multivariable ordinal logistic regression models with the 3 POS factors as dependent variables, for the first model (factor 1 physical and psychological well-being), as age increased, the well-being also improved (B = 0.022, p = 0.037), and as physical function score worsened, factor score also worsened (B = -0.685, p < 0.001). In the second model (factor 2 interpersonal well-being), a trend toward significance was found for gender, with being male predicting a higher (better) factor score (B = 0.502, p = 0.067). For the third model (factor 3 existential and spiritual), increasing age was predictive of higher (better) factor score (B = 0.023, p = 0.032), and worsening function was predictive of lower (worse) factor score (B = -0.543, p < 0.001). CONCLUSIONS: This novel data revealed pain and information to plan for the future to affect patients most severely, underlining the importance of analgesia and social support. HIV infection did not affect the level of need. Our data suggest increasing need as function declines; therefore, home-based models with adequate family support are essential.