Summary Background Serious life-threatening and life-limiting illnesses place an enormous burden on society and health systems. Understanding how this burden will evolve in the future is essential to inform policies that alleviate suffering and prevent health system weakening. We aimed to project the global burden of serious health-related suffering requiring palliative care until 2060 by world regions, age groups, and health conditions. Methods We projected the future burden of serious health-related suffering as defined by the Lancet Commission on Palliative Care and Pain Relief, by combining WHO mortality projections (2016–60) with estimates of physical and psychological symptom prevalence in 20 conditions most often associated with symptoms requiring palliative care. Projections were described in terms of absolute numbers and proportional change compared with the 2016 baseline data. Results were stratified by World Bank income regions and WHO geographical regions. Findings By 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016. 83% of these deaths will occur in low-income and middle-income countries. Serious health-related suffering will increase in all regions, with the largest proportional rise in low-income countries (155% increase between 2016 and 2060). Globally, serious health-related suffering will increase most rapidly among people aged 70 years or older (183% increase between 2016 and 2060). In absolute terms, it will be driven by rises in cancer deaths (16 million people, 109% increase between 2016 and 2060). The condition with the highest proportional increase in serious-related suffering will be dementia (6 million people, 264% increase between 2016 and 2060). Interpretation The burden of serious health-related suffering will almost double by 2060, with the fastest increases occurring in low-income countries, among older people, and people with dementia. Immediate global action to integrate palliative care into health systems is an ethical and economic imperative. Funding Research Challenge Fund, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London.

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

Context. Advances being made in improving access to HIV drugs in resource poor countries mean HIV patients are living longer, and, therefore, experiencing pain over a longer period of time. There is a need to provide effective interventions for alleviating and managing pain.

IntroductionPerson-centred care has become internationally recognised as a critical attribute of high-quality healthcare. However, the concept has been criticised for being poorly theorised and operationalised. Serious illness is especially aligned with the need for person-centredness, usually necessitating involvement of significant others, management of clinical uncertainty, high-quality communication and joint decision-making to deliver care concordant with patient preferences. This review aimed to identify and appraise the empirical evidence underpinning conceptualisations of ‘person-centredness’ for serious illness.MethodsSearch strategy conducted in May 2020. Databases: CINAHL, Embase, PubMed, Ovid Global Health, MEDLINE and PsycINFO. Free text search terms related to (1) person-centredness, (2) serious illness and (3) concept/practice. Tabulation, textual description and narrative synthesis were performed, and quality appraisal conducted using QualSyst tools. Santana et al’s person-centred care model (2018) was used to structure analysis.ResultsPRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow data: n=12,446 studies screened by title/abstract, n=144 full articles assessed for eligibility, n=18 studies retained. All studies (n=18) are from high-income countries, and are largely of high quality (median score 0.82). The findings suggest that person-centred care encompasses the patient and family being respected, given complete information, involved in decision-making and supported in their physical, psychological, social and existential needs. The studies highlight the importance of involving and supporting family/friends, promoting continuation of normality and self-identity, and structuring service organisation to enable care continuity.ConclusionPerson-centred healthcare must value the social network of patients, promote quality of life and reform structurally to improve patients’ experience interacting with the healthcare system. Staff must be supported to flexibly adapt skills, communication, routines or environments for individual patients. There remains a need for primary data investigating the meaning and practice of PCC in a greater diversity of diagnostic groups and settings, and a need to ground potential components of PCC within broader universal values and ethical theory.

Introduction Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders’ data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe. Methods We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care. Results Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients. Conclusion We identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.

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Objective: We describe the prevalence of pain and its associations with healthcare resource utilisation and quality-of-life. Design: The POPPY Study recruited three cohorts: older PLWH (≥50 years, n=699), younger demographically/lifestyle similar PLWH (<50 years, n=374) and older demographically/lifestyle similar HIV-negative (≥50 years, n=304) people from April 2013-February 2016. Methods: Current pain and pain-related healthcare use was collected via a self-reported questionnaire. Logistic regression assessed between-group differences in the prevalence of pain in the past month and current pain after controlling for potential confounders. Associations between current pain and healthcare resource use, reported joint problems, depressive symptoms, quality-of-life and functional status were assessed in PLWH using Mann-Whitney U and Chi-squared tests. Results: Pain in the past month was reported by 473/676 (70.0%) older PLWH, 224/357 (62.7%) younger PLWH and 188/295 (63.7%) older HIV-negative controls (p=0.03), with current pain reported in 330 (48.8%), 134 (37.5%) and 116 (39.3%), respectively (p=0.0007). Older PLWH were more likely to experience current pain, even after adjustment for confounders. Of those with pain in the past month, 56/412 (13.6%) had missed days of work or study due to pain, and 520 (59%) had seen a doctor about their pain. PLWH experiencing current pain had more depressive symptoms, poorer quality-of-life on all domains, and greater functional impairment, regardless of age group. Conclusions: Even in the effective ART era, pain remains common in PLWH and has a major impact on quality-of-life and associated healthcare and societal costs. Interventions are required to assist clinicians and PLWH to proactively manage pain.

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