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.
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.
The 2nd Uganda Conference on Cancer and Palliative Care was held in September 2019 in Kampala, Uganda under the theme: Towards Universal Coverage. It was hosted by the Uganda Cancer Institute and the Palliative Care Association of Uganda (PCAU). The conference brought together 350 delegates from eight countries. Key themes from the conference included: universal health coverage (UHC), service provision and public health; resources for achieving UHC; capacity building; human rights and engagement on the implementation of the recommendations made by the Uganda Human Rights Commission; provision of cancer and palliative care to 'hard to reach' and 'vulnerable' groups; paediatrics; health promotion and prevention; policy and advocacy and digital technology. The conference also gave opportunity to celebrate the 20th Anniversary of the work of PCAU, with a celebration dinner attended by the Minister of Health. The past few years have seen significant developments in both cancer and palliative care in Uganda, and this was evident in the presentations, and the way that provision has changed and improved since the first cancer and palliative care conference in 2017. Emphasis on UHC, along with the support of government and other stakeholders, is important in the ongoing development of cancer and palliative care services in Uganda.
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: 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.
The International Children's Palliative Care Network (ICPCN) held its third international conference on children's palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference-inspiration, innovation and integration-brought together 250 participants from 41 countries and was held in conjunction with local partners-Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children's palliative care in KwaZulu-Natal (KZN) and nationally. Seven pre-conference workshops were held prior to the conference on topics such as pain and symptom management, children's palliative care within a humanitarian crisis, perinatal palliative care, research, developing programmes, ethical issues and difficult conversations in children's palliative care. Delegates were welcomed in true Durban style at the welcome reception hosted by the City of Durban and uShaka Marine World. The opening plenary included entertainment from the Open Air School and Hillcrest Primary School, and inspirational talks from the Member of the Executive Council (MEC) for Health, a representative of the World Health Organization (WHO), the Chief Executive of ICPCN and the Noble Peace Prize Nominee Dr MR Rajagopal from Pallium India. Plenary sessions were interspersed throughout the conference with 56 oral concurrent presentations and workshops, six 'Meet the expert sessions' 100 poster presentations and the South African Premier of the film 'Hippocratic: 18 Experiments in gently shaking the world'. There was a great feeling of networking and learning throughout the conference, with the conference being well evaluated, and an increase in the level of presentations and research from previous conferences demonstrating the steps that are being taken in children's palliative care globally.
The central principle of "balance" represents the dual obligation of governments to establish a system of control that ensures the adequate availability of controlled substances for medical and scientific purposes while simultaneously preventing their nonmedical use, diversion, and trafficking, two primary goals of the international control system. On the one hand, although strong opioids, including morphine, are absolutely necessary for the relief of severe pain, legitimate access to opioids for pain treatment and palliative care is lacking in the majority of the world's countries. On the other hand, in a few high-income countries with higher consumption of prescription opioids, diversion and nonmedical use are increasingly prevalent. This report presents examples of unbalanced systems and a joint statement from global and regional palliative care organizations to promote development of balanced systems for optimal public health outcomes. Although nonmedical use of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor to interfere in their legitimate medical use for patient care. As representatives of palliative care organizations, we urge heads of state to act and to take measures to ensure and restore balanced systems in their countries and call on public health leaders and regulators to work together.
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.
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC. A review of ICPCN's e-learning programmes was undertaken in April/May 2018. At the time of writing, there are seven courses available, with more scheduled to be released in the near future. All courses are available in English, with some available in other languages, including Mandarin, Czech and Dutch. Between May 2016 and April 2018, 1501 individuals accessed the courses from 96 countries (39% nurses, 28% doctors). English was the prevalent language used (74%), followed by Spanish (8.5%). To date, over 3106 participants have accessed the e-learning programme from 124 countries. An evaluation in 2015/16 found that >80% of respondents said the courses were clear, understandable, rated them highly and found them useful. Some 75% of respondents reported improved knowledge, skills and change in attitude, while 61% reported a change in practice. The ICPCN e-learning platform is an innovative way of improving knowledge and understanding of CPC, thereby increasing the accessibility and availability of CPC.
AIM: To seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions.
BACKGROUND: Internationally there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults.
DESIGN: Descriptive cross-sectional survey.
METHODS: Children and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015-February 2016.
FINDINGS: Respondents (N=76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were: a lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision.
CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
There is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it.
The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organisations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children's palliative care and the need to collaborate, network and share resources. Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership. The history of the organisation is described, including some of the key events since its inception. Working in collaboration with others, ICPCN has five key focus areas: Communication; Advocacy; Research; Education; and Strategic development, and is the only international charity working globally for the rights of children with palliative care needs. Activities in these areas are discussed, along with the inter-connection between the five areas. Without the ICPCN, palliative care for children would not have developed as far as it has over the years and the organisation is committed to ongoing work in this area until all children requiring palliative care have access to quality services, wherever they live around the world.
Background: Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study.
Methods: Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets).
Results: The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit.
Conclusions: The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.
En 2009, le ministère serbe de la Santé a adopté un plan national de soins palliatifs, faisant émerger la vision d'un système de soins palliatifs global et moderne à travers toute la Serbie. De mars 2011 à novembre 2014, un projet financé par l'Union Européenne a été mené afin de mettre ce plan en oeuvre grâce à l'implantation d'une assistance technique et à l'application des normes européennes et internationales. Des progrès majeurs ont été accomplis en matière de formation aux soins palliatifs, de politique et de législation, de sorte que la situation des soins palliatifs est passée de l'implantation locale à l'intégration préliminaire. Cependant, des progrès restent à accomplir afin de garantir l'accès aux soins palliatifs pour tous ceux qui en ont besoin. [d'après résumé revue]
Les auteurs discutent des phases initiales de la création d'une échelle de résultats de soins palliatifs pour les enfants en Afrique sub-saharienne.
Les résultats de l'étude pilote suggèrent que l'APCA AfricanC-POS est un outil utile pour mesurer les résultats et est sensible au changement. Des modifications ont été apportées à l'outil suite à un examen d'expert des conclusions et une validation plus poussée est en cours.
Cet article présente l'International Children’s Palliative Care Network (Réseau international de soins palliatifs pédiatriques) qui a été créé en 2005 à Séoul en Corée du Sud. Il a pour but de faciliter le partage des connaissances et de promouvoir le développement des soins palliatifs pour les enfants dans le monde entier.
Le livre blanc de l'EAPC (Association Européenne pour les Soins Palliatifs) intitulé "Core competencies for education in paediatric palliative care" sur les compétences de base pour la formation en soins palliatifs pédiatriques, est basé sur les trois niveaux de formation actuellement adoptés par l'EAPC.
Objective : To describe the dimensionality of a measure of spiritual well-being (SWB) (the "Spirit 8") in palliative care (PC) patients in South Africa and Uganda, and to determine SWB in this population. Study Design and Setting : A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI). Translated questionnaires were administered to consecutively recruited patients. Factor analysis and Rasch analysis were used to examine the dimensionality of eight items from the Well-being and Transcendent subscales. The resulting measure (the "Spirit 8") was used to determine levels of SWB. Results : Two hundred eighty-five patients recruited ; mean age 40.1 ; 197 (69.1 %) female ; primary diagnosis HIV (80.7 %), cancer (17.9 %). Internal consistency of the eight-item scale was alpha =0.73 ; Well-being factor alpha =0.69, Transcendence factor alpha =0.68. Rasch analysis suggested unidimensionality. Mean SWB score was 26.01 (standard deviation 5.68). Spiritual distress was present in 21.4-57.9 %. Attending the Ugandan service, HIV and younger age were associated with poorer SWB scores. Conclusion : The Spirit 8 is a brief, psychometrically robust, unidimensional measure of SWB for use in South African and Ugandan PC research. Further research testing the Spirit 8 and examining the SWB of PC patients in South Africa and Uganda is needed to improve spiritual care.
Origine : BDSP. Notice produite par INIST-CNRS qR0xoH8l. Diffusion soumise à autorisation
Objective : To examine the factor structure of the Missoula Vitas Quality of Life Index (MVQOLI) in palliative care patients in South Africa and Uganda and to assess the tool's appropriateness for measuring quality of life (QOL) in this context. Study Design and Setting : Cross-sectional survey using the MVQOLI, a 26-item QOL measure containing five subscales (Function, Symptoms, Interpersonal, Well being, and Transcendent), in five palliative care services in South Africa and Uganda. Results : Two hundred eighty-five patients were recruited ; mean age was 40.1 years ; 197 (69.1%) were female ; primary diagnoses were human immunodeficiency virus infection (80.7%) and cancer (17.9%). A five-factor solution, accounting for 55% of variance, presented the best model of fit. The factors corresponded relatively closely to the original subscales, with only 4 of the 20 items not loading on the factor corresponding to the appropriate subscale. Internal consistency was high (alpha=0.83). Conclusion : We found evidence of five factors underpinning the MVQOLI in a large sample of South African and Ugandan palliative care patients. The five factors corresponded reasonably well to the original subscales, suggesting that it is a promising measure for use in this population. However, further testing of its psychometric properties, comprehensibility, and scoring require further research in sub-Saharan Africa.
Origine : BDSP. Notice produite par INIST-CNRS 8R0xGHm8. Diffusion soumise à autorisation
L'auteur pense que les soins palliatifs ne peuvent pas être considérés comme des soins basiques du fait des compétences particulières qu'ils demandent pour une pratique de qualité. Les besoins en Afrique sont importants, mais ils ne peuvent pas être donnés uniquement par des spécialistes. Cette situation nécessite donc une adaptation tout en restant fidèle à la philosophie des soins palliatifs.