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

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was 3253 pound (standard deviation 3652) pound for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed 250% to 1,507 pound (standard deviation 9911) pound. Increased patient disability resulting from breathlessness was associated with high cost (629 pound per unit increase in disability score;p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group

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

Patient preferences for antipsychotic drug side effects: a discrete choice experiment

Background Development of pharmaceutical interventions for schizophrenia emphasizes clinical efficacy and subsequent effectiveness and cost-effectiveness. However, given the many side effects of antipsychotic medication, it is important to consider the importance of different side effects on the preferences that people with schizophrenia have for different drugs. This study aims to use a discrete choice experiment to elicit patient preferences for antipsychotic medication with different side effects profiles. Method Preferences for antipsychotic side effects were investigated using a discrete choice experiment conducted in south London. 297 participants with a schizophrenia diagnosis who had been in receipt of anti-psychotic medication for a minimum of one month were included. Participants were presented with a sequence of choices involving five antipsychotic side effects (attributes) each with four levels. Conditional logit models were used to determine the side effects most (and least) likely to be preferred by people prescribed antipsychotics. Subgroup analyses explored the impact of side effects by gender, ethnicity, age, and symptoms. Results As expected, participants tended to value antipsychotic medications offering the least side effects, and the model coefficients were in the expected direction. For the whole sample and subgroups, memory and fatigue were the most important side effects, whereas palpations and mobility were the least important. Conclusions Participants had a strong preference for medications with the least side effects on memory and fatigue. These findings should inform drug development by pharmaceutical companies and prescribing practice by clinicians

Factors associated with transition from community settings to hospital as place of death for adults aged 75 years or older: a population-based mortality follow-back survey

Objective: To identify factors associated with end of life (EoL) transition from usual place of care to hospital as place of death for people aged 75 years or older (75+). Design: Population-based mortality follow-back survey. Setting: Deaths over six months in 2012 in two unitary authorities in England, covering 800 square miles with over one million residents. Participants: A random sample of people aged 75+ who died in a care home or hospital and all those who died at home or in a hospice unit. Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey. Measurements: Our main outcome was EoL transition to hospital as place of death versus no EoL transition to hospital. We used multivariable modified Poisson regression to examine factors (illness, demographic and environmental) related to EoL transition to hospital. Results: 443/882 (50.2%) responded, describing the care received by people who died from mostly non-malignant conditions (76.3%) at mean age 87.4 years (SD= 6.4). 32.3% transitioned to hospital and died there (n=146). Transition was more likely in respiratory disease compared to cancer (Prevalence Ratio [PR] =2.07, 95%CI 1.42- 3.01) and for people with severe breathlessness (PR=1.96, 95%CI 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional (PR=0.60, 95%CI 0.42-0.88) and when there was a key healthcare professional (PR=0.74, 95%CI 0.58-0.95). Conclusion: To reduce EoL transition to hospital for older people this study suggests a need to improve the symptom management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions and in planning for future care

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

BackgroundSerious 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.ObjectivesTo 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 methodsWe 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 criteriaWe 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 analysisWe 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 resultsWe 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 evidenceThe quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision.Authors' conclusionsVery 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

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

Purpose: To examine the use of Normalisation Process Theory (NPT) to establish if, and in what ways, the AMBER care bundle can be successfully normalised into acute hospital practice, and to identify necessary modifications to optimise its implementation. Method: Multi-method process evaluation embedded within a mixed-method feasibility cluster randomised controlled trial in two district general hospitals in England. Data were collected using (i) focus groups with health professionals (HPs), (ii) semi-structured interviews with patients and/or carers, (iii) non-participant observations of multi-disciplinary team meetings and (iv) patient clinical note review. Thematic analysis and descriptive statistics, with interpretation guided by NPT components (coherence; cognitive participation; collective action; reflexive monitoring). Data triangulated across sources. Results: Two focus groups (26 HPs), nine non-participant observations, 12 interviews (two patients, 10 relatives), 29 clinical note reviews were conducted. While coherence was evident, with HPs recognising the value of the AMBER care bundle, cognitive participation and collective action presented challenges. Specifically: (1) HPs were unable and unwilling to operationalise the concept of ‘risk of dying’ intervention eligibility criteria (2) integration relied on a ‘champion’ to drive participation and ensure sustainability; and (3) differing skills and confidence led to variable engagement with difficult conversations with patients and families about, for example, nearness to end of life. Opportunities for reflexive monitoring were not routinely embedded within the intervention. Reflections on the use of the AMBER care bundle from HPs and patients and families, including recommended modifications became evident through this NPT-driven analysis. Conclusion: To be successfully normalised, new clinical practices, such as the AMBER care bundle, must be studied within the wider context in which they operate. NPT can be used to the aid identification of practical strategies to assist in normalisation of complex interventions where the focus of care is on clinical uncertainty in acute hospital settings

Between loss and restoration: The role of liminality in advancing theories of grief and bereavement

© 2024 The Author(s). Published by Elsevier Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been explored. To advance grief theory this paper reports analysis of the survey free-text data to examine the relationship between social support and emotional responses to bereavement. Individuals bereaved of a civil partner or spouse 6–10 months previously were identified through death registration data. 569/1945 (29 %) completed surveys were received. Of those, 311 participants (55 %) provided responses to two free-text questions which asked about their ‘feelings since the death of their partner or spouse’, and ‘about the support around’ them. Data were analysed using corpus-assisted discourse analysis and the discourse dynamics approach for figurative language. Participants described diverse emotional responses to the bereavement (e.g. sadness, anger, denial, acceptance), and the value of formal and informal bereavement support. Although many of the experiences described are accounted for in existing grief theory, some participants described a liminal experience not recognised within these theories. They felt trapped, unable to engage with loss or restoration, and unable to move forward as their planned future no longer existed. They sought out ‘communitas’ (solidarity in experiences), but often found support from their social networks had diminished. Metaphors were used to describe this liminality, with partner grief expressed as a dark agentic force, a monster, an abyss, and as water. The findings of this study offer original insights into experiences and trajectories of bereavement, and our understandings of prolonged or complicated grief. A novel model ‘Between Loss and Restoration’ is presented to include these experiences. Recognition of the place for liminality within the spectrum of grief experiences could enhance grief literacy and improve formal and informal bereavement support provision.Peer reviewe

Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

Background : Breathlessness is a common and distressing symptom of many advanced diseases, affecting around 2 million people in the UK. Breathlessness increases with disease progression and often becomes chronic or refractory. Breathlessness-triggered services that integrate holistic assessment and specialist palliative care input as part of a multiprofessional approach have been developed for this group, offering tailored interventions to support self-management and reduce distress. Objectives : The aim was to synthesise evidence on holistic breathlessness services for people with advanced disease and chronic or refractory breathlessness. The objectives were to describe the structure, organisation and delivery of services, determine clinical effectiveness, cost-effectiveness and acceptability, identify predictors of treatment response, and elicit stakeholders’ evidence-based priorities for clinical practice, policy and research. Design : The mixed-methods evidence synthesis comprised three components: (1) a systematic review to determine the clinical effectiveness, cost-effectiveness and acceptability of holistic breathlessness services; (2) a secondary analysis of pooled individual data from three trials to determine predictors of clinical response; and (3) a transparent expert consultation (TEC), comprising a stakeholder workshop and an online consensus survey, to identify stakeholders’ priorities. Results : Thirty-seven papers reporting on 18 holistic breathlessness services were included in the systematic review. Most studies enrolled people with thoracic cancer, were delivered over 4–6 weeks, and included breathing training, relaxation techniques and psychological support. Meta-analysis demonstrated significant reductions in the Numeric Rating Scale (NRS) distress due to breathlessness, significant reductions in the Hospital Anxiety and Depressions Scale (HADS) depression scores, and non-significant reductions in the Chronic Respiratory Disease Questionnaire (CRQ) mastery and HADS anxiety, favouring the intervention. Recipients valued education, self-management interventions, and expertise of the staff in breathlessness and person-centred care. Evidence for cost-effectiveness was limited and inconclusive. The responder analysis (n = 259) revealed baseline CRQ mastery and NRS distress to be strong predictors of the response to breathlessness services assessed by these same measures, and no significant influence from baseline breathlessness intensity, patient diagnosis, lung function, health status, anxiety or depression. The TEC elicited 34 priorities from stakeholders. Seven priorities received high agreement and consensus, reflecting stakeholders’ (n = 74) views that services should be person-centred and multiprofessional, share their breathlessness management skills with others, and recognise the roles and support needs of informal carers.  Limitations : The evidence synthesis draws predominantly from UK services and may not be generalisable to other settings. Some meta-analyses were restricted by reporting biases and statistical heterogeneity.  Conclusions : Despite heterogeneity in composition and delivery, holistic breathlessness services are highly valued by recipients and can lead to significant improvements in the distress caused by breathlessness and depression. Outcomes of improved mastery and reduced distress caused by breathlessness are not influenced by patient diagnosis, lung function or health status. Stakeholders highlighted the need for improved access to person-centred, multi professional breathlessness services and support for informal carers.  Future work : Our research suggests that key therapeutic components of holistic breathlessness services be considered in clinical practice and models of delivery and educational strategies to address stakeholders’ priorities tested