Irene Julie Higginson

King's College London | KCL · Cicely Saunders Institute for Palliative Care, Policy and Rehabilitation

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons l...

Background People living at home with advanced illness require around-the-clock care. Telephone-based advice lines are critical for accessing help, yet evidence is limited. Aim To explore out-of-hours telephone-based advice lines available to adults living at home with advanced illness and their carers across the UK, and construct a practical frame...

Background: People with palliative and end-of-life care needs in the community and their carers often rely on out-of-hours services to remain at home. Policymakers internationally have recommended implementation of telephone advice lines to ensure 24-hour access to support. However, little is known about their effectiveness. Aim: To review the evid...

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 psyc...

Chronic breathlessness, a persistent and disabling symptom despite optimal treatment of underlying causes, is a frightening symptom with serious and widespread impact on patients and their carers. Clinical guidelines support the use of morphine for the relief of chronic breathlessness in common long-term conditions, but questions remain around clin...

Background Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of l...

Background: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. Methods: We consulted experts and followed consensus-based st...

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose poli...

Introduction SELF-BREATHE is a complex, transdiagnostic, supportive, digital breathlessness intervention co-developed with patients. SELF-BREATHE seeks to build capacity and resilience within health services by improving the lives of people with chronic breathlessness using nonpharmacological, self-management approaches. This study aimed to determi...

Background Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns. Aim To translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. Design The study applied a standardized methodology entailing six phases for translation and...

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to co...

Since the first edition of The Handbook of Psychiatry in Palliative Medicine was released in 2000, it has come to occupy an important and distinctive niche within the literary anthology of palliative medicine. The Handbook is widely regarded as the definitive reference on psychosocial issues affecting patients with life-threatening and life-limitin...

Background Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study...

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to co...

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...

Objectives To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs. Design Cross-sectional study using pooled data from 3 mortality follow-back surveys. Setting and Participants People who died with dementia....

Background The Children’s Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. Aim To determine the face and content validity, comprehens...

Context Evidence of symptom control outcomes in severe COVID is scant. Objective To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. Methods Multicentre cohort study of people with COVID across England and Wales supported by palliative care ser...

Introduction The burden of chronic breathlessness on individuals, family, society, and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the COVID-19 pandemic. Online breathlessness interventions have been propose...

Context: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. Objectives: To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characterist...

Background Reducing hospital admissions among people dying with dementia is a policy priority. Aim To explore associations between primary care contacts, continuity of primary care, identification of palliative care needs, and unplanned hospital admissions among people dying with dementia. Design and setting This was a retrospective cohort study...

Context Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objectives To explore the impact of the COVID-19 pandemic and lockdowns on this population....

Introduction The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delive...

Objective To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting Organisations providing spec...

Objective To examine the association between primary and community care use and measures of acute hospital use in people with cancer at the end of life. Design Retrospective cohort study. Setting We used Discover, a linked administrative and clinical data set from general practices, community and hospital records in North West London (UK). Parti...

Background: Heart failure (HF) is increasingly prevalent in the growing elderly population and commonly associated with cognitive impairment. We compared trends in place of death (PoD) of HF patients with/without comorbid dementia around the implementation period of the Mental Capacity Act (MCA) in October 2007, this legislation supporting patient...

Background Respiratory medicine (RM) and palliative care (PC) physicians’ management of chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease (fILD) and lung cancer (LC), and the influence of practice guidelines was explored via an online survey. Methods A voluntary, online survey was d...

Context The growth of patient reported outcome measures data in palliative care provides an opportunity for machine learning to identify patterns in patient responses signifying different phases of illness. Objectives The study will explore if machine learning and network analysis can identify phases in patient palliative status through symptoms r...

Background Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim To understand rehabilitation provision in palliative c...

Objectives: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting: Organisations providing sp...

Objectives To identify factors associated with palliative care services being busier during Covid-19. Methods Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (...

Background COVID-19 has had a devastating impact on care homes, their residents and staff. Over 37,000 UK care home residents have died from COVID-19; many more have experienced symptoms and distress (Scobie, 2021). There has been very limited examination of palliative and end-of-life care in care homes during COVID-19, or strategies to improve thi...

Background COVID-19 has placed huge stress on healthcare systems and services, often impacting the well-being of staff across all settings (Mehta, Machado, Kwizera, et al., 2021). Little is known about the pandemic’s impact on hospice staff. Aims Identify how responding to COVID-19 has impacted hospice staff, whether and why this resulted in exper...

Introduction Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, m...

Background Clinical uncertainty is inherent for people with frailty and multimorbidity. Depleted physiological reserves increase vulnerability to a decline in health and adverse outcomes from a stressor event. Evidence-based tools can improve care processes and outcomes, but little is known about priorities to deliver care for older people with fra...

Breathlessness is a common and distressing symptom in advanced lung diseases. It can continue despite optimal management of known underlying condition(s), increasing towards the end of life. It is often debilitating for patients, and frightening for them and those important to them, resulting in hospital admission. The sensation of breathlessness i...

Background Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical...

Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs...

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to i...

Audit approaches and methods are now well advanced in palliative care, especially in clinical audit. This chapter discusses these approaches and methods, and addresses such questions as ‘Why perform clinical audit in palliative medicine?’ and ‘How do we assess the quality and safety of palliative care?’ It discusses the evolving terms of audit, qua...

Background Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. Aims To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date. Design Descr...

Introduction: Evidence shows most patients are not recognised by their attending healthcare professionals as having palliative needs. This feasibility study aimed to aid healthcare professionals identify hospital patients with palliative needs.Material and Methods: Mixed-methods, cross-sectional, observational study. The patient inclusion criteria...

Objectives To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. Methods Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ ² tests used to explore relationships between categorical variables....

Background: Heart failure is increasingly prevalent in the growing elderly population and commonly associated with cognitive impairment. This study compared trends in place of death (PoD) of heart failure patients with / without comorbid dementia over the period of implementation of the Mental Capacity Act (MCA) in October 2007, this legislation su...

Background Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions. Aim To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identificatio...

Objectives To examine the patterns and influences on repeated emergency department attendance among frail older people with deteriorating health. Study design Multicentre prospective cohort study (International Access Rights and Empowerment II study) with convergent mixed methods design. Methods Eligible patients were aged ≥65 years, with Clinica...

Objectives The aim of the study was to explore acute care utilisation towards end of life by and the place of death for patients with serious mental disorders and to demonstrate any inequalities in end-of-life care faced by this patient group. Study design This is a retrospective cohort study using linked, routinely collected data. Methods This s...

Background Globally, a rising number of people live into advanced age and die with multimorbidity and frailty. Palliative care is advocated as a person-centred approach to reduce health-related suffering and promote quality of life. However, no evidence-based interventions exist to deliver community-based palliative care for this population. Aim T...

Background Most deaths still take place in hospital; cost-effective commissioning of end-of-life resources is a priority. This review provides clarity on the effectiveness of hospital-based specialist palliative care. Objectives The objectives were to assess the effectiveness and cost-effectiveness of hospital-based specialist palliative care. Po...

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative...

Background Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim Describe the challenges that UK specialist palliative care services experienced regarding advance care p...

Background Hospice and palliative care services provision for COVID-19 patients is crucial to improve their life quality. There is limited evidence on COVID-19 preparedness of such services in the Asia-Pacific region. Aim To evaluate the preparedness and capacity of hospice and palliative care services in the Asia-Pacific region to respond to the...

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in voluntee...

Background There is wide inequity in specialist palliative care provision across settings. The absence of any standard way to group by case complexity is a barrier to addressing these inequities. Aim We therefore aimed to develop a casemix classification for UK specialist palliative care across settings, by identifying/grouping patient-level attri...

London was at the forefront of the COVID-19 pandemic in the UK, with an exponential rise in hospital admissions from March 2020. This case study appraises the impact on and response of a hospital palliative care service based in a large inner-city teaching hospital. Referrals increased from a mean of 39 to 75 per week; deaths from 13 to 52 per week...

Background Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim To map and understand specialist palliative care services innovations and practice changes in respons...

BACKGROUND: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. AIM: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. METHODS: A cross-secti...

Background Adults increasingly live and die with chronic progressive conditions into advanced age. Many live with multimorbidity and an uncertain illness trajectory with points of marked decline, loss of function and increased risk of end of life. Intermediate care units support mainly older adults in transition between hospital and home to regain...

Objective To estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery. Design We estimated the prevalence of palliative care need by analysing the proportion of deaths from defined chronic progressive illnesses. We described linear projections up to 2040 using national death re...

Context Systematic data on the care of people dying with COVID-19 are scarce. Objectives To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. Methods We surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logisti...

In people with advanced respiratory disease, we examined (i) the impact of COVID-19–related physical and social isolation on physical activity and (ii) relationships between time spent in isolation and disability in activities of daily living. Cross-sectional analysis was conducted in adults with advanced non-small cell lung cancer, chronic obstruc...

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

Background Systematic data on the care of people dying with COVID-19 are scarce. We studied the response of and challenges for palliative care services during the COVID-19 pandemic. Methods We surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logistic regression identified associations with key chal...

Background Specialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care. Aim To map and understand specialist palliative care services innovations and practice changes in response to COVID-19 (CovPall). Design Online su...

Background During the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them. Aim To describe the challenge...

We assessed efficacy and effectiveness of pharmacological and non-pharmacological interventions in improving symptom control, functional exercise capacity and quality of life (Qol) in people living with fibrotic interstitial lung disease (ILD). We summarised evidence from three previous reviews (to June 2014) and conducted an updated search of nine...

Context Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning. Objective To identify the prevalence of disability in activities of daily living, associations and change over time, in older pe...

Background: Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness....

Introduction: Advanced cancer and/or respiratory disease threaten a person's independence in activities of daily living (ADL). Understanding how disability develops can help direct appropriate and timely interventions. Aim: To identify different trajectories and associations of disability in ADL and appraise its measurement. Methods: Medline,...

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 (Engli...