BACKGROUND: The International Association for Hospice and Palliative Care (IAHPC) developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief.
AIM: The objective of this paper is to present the research behind the new definition.
METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In phase one, 38 PC experts evaluated the components of the World Health Organization (WHO) definition and suggested new/revised ones. In phase two, 412 IAHPC members in 88 countries expressed their level of agreement with the suggested components. In phase three, using results from phase two, the expert panel developed the definition.
RESULTS: The consensus-based definition is "Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers." The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to palliative care.
CONCLUSIONS: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering, and those who believe that PC describes the care of those with a very limited remaining life span.
The COVID-19 pandemic requires healthcare teams to rethink how they can continue to provide high quality care for all patients, whether they are suffering from a COVID-19 infection or other diseases with clinical uncertainty. Although the number of cases of COVID-19 in Jordan remains relatively low compared to many other countries, our team introduced significant changes to team operations early, with the aim of protecting patients, families and healthcare staff from COVID-19 infections, while preparing to respond to the needs of patients suffering from severe COVID-19 infections. This paper describes the changes made to our ‘Do not resuscitate' (DNR) policy for the duration of the pandemic.
Cases of COVID-19 are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesise evidence for the role and response of palliative care and hospice teams to viral epi/pandemics, to inform the COVID-19 pandemic response. We conducted a rapid systematic review according to PRISMA guidelines in five databases. Of 3094 papers identified, ten were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the United States and Italy. All had an observational design. Findings were synthesised using a previously proposed framework according to ‘systems’ (policies, training and protocols, communication and coordination, data), ‘staff’ (deployment, skill mix, resilience), ‘space’ (community provision, use of technology) and ‘stuff’ (medicines and equipment, personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by: 1) responding rapidly and flexibly; 2) ensuring protocols for symptom management are available, and training non-specialists in their use; 3) being involved in triage; 4) considering shifting resources into the community; 5) considering redeploying volunteers to provide psychosocial and bereavement care; 6) facilitating camaraderie among staff and adopt measures to deal with stress; 7) using technology to communicate with patients and carers; 8) adopting standardised data collection systems to inform operational changes and improve care.
Background: Increasing evidence shows that advance care planning is effective in improving outcomes. However, its applicability and acceptability outside Western cultures remain unknown. Examination of relevant cultural adaptations is required prior to wider adoption.
Aim: To examine the feasibility and acceptability of a culturally adapted advance care planning intervention in a Taiwanese inpatient hospital for advanced cancer patients, family members and healthcare professionals.
Methods: A single-group, non-controlled, mixed methods feasibility study guided by a previously developed logic model. The culturally adapted advance care planning intervention represented a one-time intervention, comprising pre-advance care planning preparation and follow-up consultation. Qualitative interviews explored participants’ view on their involvement in the study. Patients’ medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis.
Results: N = 29 participants (n = 10 patients; n = 10 family members and n = 9 healthcare professionals) participated in the intervention, of who 28 completed follow-up interviews. Of the 10 advance care planning interventions delivered, most components (n = 10/13) were met. Key contextual moderators influencing the intervention feasibility included: (1) resource constraints resulting in increased workload; (2) care decisions informed by relatives’ experiences of care; (3) the requirement for financial and policy support; and (4) a presumption for end-of-life care provision and surrogate decision-making. Six areas of intervention refinement were identified for future research.
Conclusion: Implementing a culturally adapted advance care planning intervention in an inpatient hospital setting in Taiwan is possible. The participants reported the intervention to be acceptable. However, careful attention to the conceptual underpinning using local primary data is imperative for its success.
Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns.
Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.
Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.
Results: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7–17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.
Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
Background: The Universal Health Coverage goals call for access to affordable palliative care to reduce inequities in “total pain” and suffering. To achieve this, a patient-centred understanding of these inequities is required.
Aim: To assess association of total pain and suffering (i.e. physical, psychological, social, and spiritual health outcomes) and perceived health care quality with financial difficulties among stage IV solid malignancy patients.
Design: Using baseline data from the COMPASS cohort study, we assessed total pain and suffering including physical (physical and functional well-being, pain, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual (spiritual well-being, hope) outcomes and perceived health care quality (physician communication, nursing care, and coordination/responsiveness). Financial difficulties were scored by assessing patient perception of the extent to which their resources were meeting expenses for their treatments, daily living, and other obligations. We used multivariable linear/logistic regression to test association between financial difficulties and each patient-reported outcome.
Setting/participants: Six hundred stage IV solid malignancy patients in Singapore.
Results: Thirty-five percent reported difficulty in meeting expenses. A higher financial difficulties score was associated with worse physical, psychological, social, spiritual outcomes, and lower perceived quality of health care coordination and responsiveness (i.e. greater total pain and suffering) (all p < 0.05). These associations persisted after adjustment for socio-economic indicators.
Conclusion: Results identify advanced cancer patients with financial difficulties to be a vulnerable group with greater reported total pain and suffering. A holistic patient-centred approach to care at end-of-life may help meet goals for Universal Health Coverage.
CONTEXT: Patients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear.
OBJECTIVE: To appraise the literature on the role of palliative care in burns management.
METHODS: Scoping review with searches in twelve databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement.
FINDINGS: 39 papers comprising of 30 primary studies (26 from high income and 4 from middle income countries), 4 reviews, 2 editorials, 2 guidelines and 1 expert board review document were retained in the review. Palliative care is used synonymously with comfort and end of life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category and it is unclear if these decisions result in timely commencement of comfort care measures. Two comfort care pathways were identified but it remained unclear how these pathways evaluated 'good death' or supported the family which creates the need for the development of other evidence-based guidelines.
CONCLUSION: Palliative care is applicable in burns management but its current role is mostly confined to the end of life period suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population.
INTRODUCTION: Palliative care is a clinically and cost-effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.
METHODS AND ANALYSIS: This is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.
ETHICS AND DISSEMINATION: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.
TRIAL REGISTRATION NUMBER: ISRCTN15727711.
BACKGROUND: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention.
AIM: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan.
METHOD: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views.
RESULTS: Forty-five participants were interviewed (n = 15 from each group). Three main decision-making trajectories were identified: (1) 'choose palliative care' was associated with patients' desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) 'decline palliative care' was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) 'no opportunity to choose palliative care' was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety.
CONCLUSION: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.
Background: The high burden of bereavement in sub-Saharan Africa is largely attributable to HIV, cancer, and other non-communicable diseases. However, interventions to improve grief and bereavement are rare. Given high rates of mortality in the context of weak health systems, community lay members are well placed to provide peer bereavement support. The 9-cell bereavement tool was developed in Zimbabwe to improve community members' capacity to support the bereaved. This study aims to determine the feasibility of implementing the 9-cell bereavement tool and recruitment to experimental evaluation.
Methods/design: This feasibility cluster randomized trial with embedded qualitative interviews will be conducted in two comparable neighborhoods in Zimbabwe. Community leaders from each neighborhood will identify 25 potential community lay bereavement supporters, each of whom will recruit 2–3 bereaved community members into the trial. The intervention will be randomly allocated to one community, and the second community will form a wait-list control (n = 75 in each community cluster). Recruitment is estimated to take place over 3 weeks. Measures at T0 (baseline, i.e., week 0), T1 (midline, i.e., week 14 or 3 months post-baseline) and T2 (endline, i.e., week 27 or 3 months post-midline) will address mental health, social support, and levels of grief per individual. Qualitative data will describe lay supporters’ views of intervention training and delivery, and participants’ experience of bereavement support.
Discussion: This is the first documented trial evaluating a bereavement intervention in sub-Saharan Africa. Recruitment, retention, and measurement data will determine the feasibility of a full trial.
Trial registration: ISRCTN, ISRCTN16484746. Registered 6 February 2018.
Policy Points: We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.
CONTEXT: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.
METHODS: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.
RESULTS: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.
CONCLUSIONS: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
INTRODUCTION: Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence.
OBJECTIVES: This study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions.
DESIGN: This cross-sectional qualitative study sampled advanced cancer patients (n=10), their family caregivers (n=10) and oncologists (n=10). Grounded theory procedures were utilised to analyse transcripts, and a theoretical model generated.
SETTING: A tertiary teaching hospital in South India.
RESULTS: The model explains how stigma associated with communicating a diagnosis of advanced cancer is enacted by treating oncologists, family members and community. This leads to patient expectations of cure and futile treatment uptake. Patients commonly only present needs with respect to pain, not within psychological, social or spiritual domains, likely due to the lack of patients' insight into their diagnosis and prognosis. As a result of oncologists' and families' unwillingness to disclose the prognosis, and patient focus on pain due to their lack of insight, palliative care clinicians view their services as under-utilised, and patients perceive palliative care as a pain management service that is not 'different' from other clinical services. Advanced care needs and purchase of futile treatments lead to lost employment among families, increased family debt and high care costs, which are rarely disclosed due to their unwillingness to discuss their needs.
CONCLUSION: Our novel theoretical model is an essential first step to ensure that complex interventions are plausible, with mechanisms of action that address the needs of relevant stakeholders. A family-centred approach with an oncology workforce skilled in communication and an enabled patient population could increase access to palliative care, and improved outcomes may be attainable.
BACKGROUND: Ensuring palliative care for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex (LGBTI) people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest.
AIM: To examine the accessibility to, and experiences of, palliative care for key populations in Zimbabwe.
DESIGN: Qualitative study using thematic analysis of in-depth interviews and focus groups.
SETTING/PARTICIPANTS: A total of 60 key population adults and 12 healthcare providers and representatives of palliative care and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge).
RESULTS: Participants described unmet needs and barriers to accessing even basic elements of palliative care. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: (a) minimal understanding of, and negligible access to, palliative care significantly increased the risk of painful, undignified deaths and (b) discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care.
CONCLUSION: Discrimination from healthcare providers and lack of referrals to palliative care services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance.
BACKGROUND: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people.
METHODS: In line with COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance, an expert group was convened to elicit views on the domains/items to include in a PCOM, implementation challenges and requirements for use in routine care by practitioners. Data were content analysed.
RESULTS: 36 UK-wide clinicians, advocates, and researchers participated. 1) Items included were: specific symptoms, education, play and social interaction, parental time for partner and other children, sex and intimacy, and sibling wellbeing. 2) Implementation challenges: supporting children and young people to engage meaningfully, that the instrument could be seen as a 'test' of parents' care quality, raising unrealistic expectations, proxy validity. 3) There is a need for clear administration and interpretation guidance and for data ownership/access to be agreed.
CONCLUSIONS: This expert meeting addressed the initial step in COSMIN guidance, informing face validity and acceptability. It provides the information necessary for the first phase of tool development and informs potential use and implementation.
BACKGROUND: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe the protocol of a longitudinal observational study among people living with CKD. The study is developed to assess the bio-psychosocial factors associated with palliative care symptoms and concerns, and pattern of health services usage among Nigerians with stages 3-5 CKD. The overall objective is to establish the evidence-base for advocacy and policy formulation, treatment guidelines, care and services, and future clinical trial studies.
METHODS: This is a multi-center study to investigate the longitudinal course of symptoms and other concerns among patients with stages 3-5 CKD in Nigeria. Interviewer administered and self-report measures at baseline (T0) and 3-month (T1) address socio-demographic characteristics, clinical-illness related information, palliative care-related symptoms and other concerns, pattern of formal or informal service usage, and bio psychosocial measures including estimated glomerular filtration rate (eGFR), anxiety, depression, quality of life, functioning, social support and spiritual wellbeing.
DISCUSSION: This study represents the first longitudinal investigation of palliative care symptoms and concerns among people with CKD in Nigeria. It includes early stages of CKD in compliance with best practices, and a comprehensive range of bio-psychosocial outcomes to understand how these factors are associated with symptoms. This study will provide evidence for how best to integrate palliative care into management of CKD to improve care and quality of life of people with CKD. The study team welcomes collaborations with both national and international researchers.
BACKGROUND:: No systematic review has focused on conceptual models underpinning advance care planning for patients with advanced cancer, and the mechanisms of action in relation to the intended outcomes.
AIM:: To appraise conceptual models and develop a logic model of advance care planning for advanced cancer patients, examining the components, processes, theoretical underpinning, mechanisms of action and linkage with intended outcomes.
DESIGN:: A systematic review of randomised controlled trials was conducted, and was prospectively registered on PROSPERO. Narrative synthesis was used for data analysis.
DATA SOURCES: The data sources were MEDLINE, CINAHL, PsycINFO, EMBASE, CENTRAL, PROSPERO, CareSearch, and OpenGrey with reference chaining and hand-searching from inception to 31 March 2017, including all randomised controlled trials with advance care planning for cancer patients in the last 12 months of life. Cochrane quality assessment tool was used for quality appraisal.
RESULTS:: Nine randomised controlled trials were included, with only four articulated conceptual models. Mechanisms through which advance care planning improved outcomes comprised (1) increasing patients' knowledge of end-of-life care, (2) strengthening patients' autonomous motivation, (3) building patients' competence to undertake end-of-life discussions and (4) enhancing shared decision-making in a trustful relationship. Samples were largely highly educated Caucasian.
CONCLUSION:: The use of conceptual models underpinning the development of advance care planning is uncommon. When used, they identify the individual behavioural change. Strengthening patients' motivation and competence in participating advance care planning discussions are key mechanisms of change. Understanding cultural feasibility of the logic model for different educational levels and ethnicities in non-Western countries should be a research priority.
BACKGROUND: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.
OBJECTIVE: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.
METHOD: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.
RESULTS: Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.
CONCLUSION: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child-family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.
BACKGROUND: The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children.
METHODS: This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children's Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences.
RESULTS: Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC-the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won't be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings.
CONCLUSIONS: The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.
Although antiretroviral therapy has reduced mortality among people with HIV, inadequate treatment coverage, ageing, and the increasing incidence of organ failure and malignancies mean that high-quality care should include care at the end of life. This Review summarises the epidemiology of HIV in relation to mortality, and the symptoms and concerns of people with AIDS and those living with HIV who have either related or unrelated advanced comorbidities. In response to the evidence of a need for palliative care, the principles and practice of palliative care are described, and the evidence for its effectiveness and cost-effectiveness is appraised. The core practices of palliative care offer a mechanism to enhance the person-centred nature of HIV care; I identify the gaps in this type of care, and present evidence for effective models of care to address these. I detail the policies that prompt governments and health systems to respond to the palliative care needs of their population. Finally, I conclude this Review with evidence-based recommendations to improve the delivery of, and access to, high-quality HIV care until the end of life, reducing unnecessary suffering while optimising person-centred outcomes.