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Background: Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage. Aim: To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness. Design: We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool. Data sources: Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care. Results: Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS (n = 99 studies) or cancer (n = 59), from East (n = 72) and Southern (n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children's school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual). Conclusions: Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level. [ABSTRACT FROM AUTHOR]

Background: Symptom distress is poorly described in persons living with HIV, with limited attention paid to physical and psychological symptom prevalence to inform optimal clinical care. Objectives: The study objective was to measure seven-day-period prevalence of symptoms among HIV-infected adult outpatients and determine if self-reported symptom burden is associated with antiretroviral therapy (ART), CD4 T-cell count, and clinical disease stage. Methods: Adult patients were consecutively recruited from HIV outpatient clinics at two referral and teaching hospitals in Uganda. Of 343 patients approached, 302 (88%) participated. Patients described symptoms during the previous week using the Memorial Symptom Assessment Scale Short Form, and level of physical functionality using the Karnofsky Performance Status (KPS) tool on the interview day. Results: A high symptom burden was reported, with the most prevalent being worry (94%), feeling sad (92%), hunger (82%), feeling nervous (75%), and feeling drowsy/tired (62%). Patients with KPS scores of <70 reported more symptoms (23 versus 10; F=289.68, P<0.001) and higher symptom distress ( P<0.04 for all analyses). Neither ART nor CD4 T-cell count were associated with symptom burden. WHO clinical stage 4 was associated with psychological symptom burden (OR 2.94, P=0.011, CI 1.281-6.735). Men were more likely to experience higher symptom burden. Conclusion: In the ART era, ambulatory HIV/AIDS patients continue to experience a high physical and psychological symptom burden. For those with advanced disease, psychological symptoms are particularly important. It is important to be observant of gender differences in patterns of symptom distress in HIV outpatient care settings. The high prevalence of hunger warrants attention as it may compromise ART initiation and adherence to ART. [ABSTRACT FROM AUTHOR]

Abstract: Context: Palliative care research in Africa is in its relative infancy, with dedicated financial support extremely limited. Therefore, setting research priorities to optimize use of limited resources is imperative. Objectives: To develop a prioritized research agenda for palliative care in Africa. Methods: We used a two-stage process involving palliative care professionals and researchers: 1) generation of an initial topic list at a consultative workshop of experts and 2) prioritization of that list using a consensus development process, the nominal group technique. Results: Phase 1: 41 topics were generated across five groups, with several topics nominated in more than one group. Phase 2: 16 topics and three broad thematic areas were identified. The two most prioritized topics within each of the three themes were the following: Theme 1: patient, family, and volunteers—1) care outcomes and the impact of palliative care as perceived by patients and caregivers and 2) palliative care needs of children; Theme 2: health providers—1) impact of palliative care training on care and practice and 2) integration of palliative care and antiretroviral therapy services; and Theme 3: health systems—1) palliative care needs assessments at the micro-, meso-, and macro-levels and 2) integration of palliative care into health systems and educational curricula. Conclusion: Consensus-based palliative care topics determined by the study can assist researchers in optimizing limited research capacities by focusing on these prioritized areas. Subsequent to the identification and publication of the research agenda, concrete steps will be undertaken by the African Palliative Care Research Network and other partners to help implement it. [Copyright &y& Elsevier]

Background: Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients' spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. Methods: The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items' content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity. Results: (1) Peace was interpreted according to the themes 'perception of self and world', 'relationship to others', 'spiritual beliefs' and 'health and healthcare'. Life worthwhile was interpreted in relation to 'perception of self and world', 'relationship to others' and 'identity'. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate. Conclusions: Findings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population. [ABSTRACT FROM AUTHOR]

Background Despite global clinical guidance that HIV patients should have multidimensional care integrated into their management, there has been very limited data to guide practice since the advent of treatment. This study aimed to determine the three-day period intensity of problems (physical, psychological, social and spiritual) among HIV patients receiving integrated palliative care in sub-Saharan Africa, and to identify associations with problem severity. Methods A sample of 230 consecutive adult patients attending five sites in South Africa and Uganda gave self-report data using a well-validated outcome scale. Multivariable regression models determine the association of patient characteristics with intensity of three scale factors. Results The most burdensome problems were (in descending order) pain, worry, symptoms, and adequate information to plan for the future. Interestingly, CD4 counts were available on file for only 59.1% of patients. In multivariate analyses, being cared for at home was associated with poorer physical/psychological factor score (B=-0.192, 95% CI 2.566 -0.464, p=0.005), while being on ART was associated with better factor score (B=0.187, 95% CI=0.424 23.80, p=0.005). For the existential/spiritual factor, being cared for at home was associated with a worse factor score (B=-0.306, 95% CI -2.776 -1.128, p<0.001). ART use was not associated with either the interpersonal or spiritual/existential factors. Discussion These self-report data reveal a high burden of both physical and psychological problems, and that communication from professionals is insufficient. Patients receiving home care may require additional support to enhance wellbeing, and treatment may not affect interpersonal and existential/spiritual wellbeing. [ABSTRACT FROM AUTHOR]

Background: End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa. Methods: An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010. Results: 168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use. Conclusion: This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa. [ABSTRACT FROM AUTHOR]

Abstract: Context: Although pain and burdensome symptoms among HIV-infected persons can be effectively managed, the availability of opioids and other symptom-controlling drugs is a particular challenge in sub-Saharan Africa. Objectives: This study aimed to identify current drug availability and prescribing practices in 12 sub-Saharan African countries and to examine the barriers and potential facilitators for use of opioids and other key HIV/AIDS symptom-controlling drugs. Methods: This was a cross-sectional survey, integrating data from palliative care facilities and competent authorities within ministries of health in 12 African countries. Results: Of 62 responding facilities, problems were reported in accessing named nonopioids, with a small number of facilities unable to dispense them. Less than half the facilities were currently prescribing opioids of any strength. Further problems were identified in terms of the availability and supply continuity of named antiemetics and anxiolytics. The data identified a number of systemic problems, suggesting that opioid supply issues are similar to less controlled drugs, such as antiemetics. Among competent authorities, there was no agreement on whether further opioid expansion was possible. Integration of data from care facilities and competent authorities highlighted a disparity in the understanding of the availability of specific drugs, with competent authorities naming drugs that were not listed by any responding facility in their respective country. Conclusion: This study shows that opioid expansion needs to balance supply and skills: Currently there are insufficient trained clinical personnel to prescribe, and supply is unreliable. Efforts to expand supply should ensure that they do not weaken current systems. [Copyright &y& Elsevier]

Dr Anne Merriman is the founder of Hospice Africa and Hospice Africa Uganda. She is presently Director of Policy and International Programmes. Here she tells the story of how HAU was founded. Dr Richard Harding is an academic researcher working on palliative care in Sub-Saharan Africa. This paper described Dr Merriman's experience in pioneering palliative care provision. In particular it examines the steps to achieving wider availability of opioids for pain management for those with far advanced disease. Hospice Africa Uganda has been a model facility in achieving high quality clinical care embedded in a strategy of advocacy and education, using a multifaceted approach that has addressed logistical, policy and legislative barriers. Until 1990 control of severe pain in Sub- Saharan Africa was non-existent except in Zimbabwe and S Africa. Oral affordable morphine was brought to Kenya through Nairobi Hospice that year, and to Uganda through Hospice Africa Uganda in 1993. This paper offers an example of a highly effective and cost efficient model of care that has transformed the ability to humanely manage the problems of those with terminal illness, and to offer a culturally appropriate "good death". Thus it is now possible to complete the ethical circle of care in resource poor circumstances. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activites in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented. [Copyright &y& Elsevier]

Summary Control of pain and symptoms and terminal care are necessary for quality HIV and cancer care in sub-Saharan Africa. However, what constitutes feasible, accessible, and effective palliative care, and how to develop such services, remains to be resolved. Africa-specific palliative care includes components that carry resource implications. Home and community-based care has been largely successful, but community capacity and the resources and clinical supervision necessary to sustain quality care are lacking. Coverage and referrals must be primary concerns. Simple lay and professional protocols have been developed, but opioid availability remains a major constraint. Areas of good practice, and areas where further success may be achieved include: attention to community needs and capacity; explicit frameworks for service development and palliative-care integration throughout the disease course (including antiretroviral provision); further education and protocols; strengthening and dissemination of diverse referral and care systems; increasing advocacy; and funding and technical skills to build audit and quality assessment. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

Context: Palliative care should be a component of COVID-19 management to relieve suffering, improve patient outcomes and save cost.Objectives: We aimed to identify and critically appraise the palliative care recommendations within COVID-19 case management guidelines in African countries.Methods: The study employed systematic guideline review design. All guidelines from any country in Africa, of any language, published between December 2019 and June 2020 were retrieved through online search and email to in-country key contacts. We conducted a content analysis of the palliative care recommendations within the guidelines and appraised the recommendations using African Palliative Care Association standards for providing quality palliative care.Results: We retrieved documents from 29 of 54 African countries. Fifteen documents from 15 countries were included in the final analysis, of which eight countries have identifiable PC recommendations in their COVID-19 management guidelines. Of these eight, only one country (South Sudan) provided comprehensive palliative care recommendations covering the domains of physical, psychological, social and spiritual wellbeing, two (Namibia and Uganda) addressed only physical and psychological wellbeing while the remaining five countries addressed only physical symptom management.Conclusions: Comprehensive palliative care which addresses physical, psychological, social and spiritual concerns must be prioritized within case management guidelines in African countries. [ABSTRACT FROM AUTHOR]

The authors comment on palliative care quality and capacity in Africa during the COVID-19 pandemic. Topics discussed include the minimal preparedness and response capacity of palliative care providers to COVID-19, failure to develop evidence-based palliative care interventions to improve grief and bereavement outcomes in the region, and the impact of the pandemic on the supply of medical products including palliative medicines.

Context: Evidence from prior public health emergencies demonstrates palliative care's importance to manage symptoms, make advance care plans, and improve end-of-life outcomes., Objective: To evaluate the preparedness and capacity of palliative care services in the Middle-East and North Africa region to respond to the COVID-19 pandemic., Methods: A cross-sectional online survey was undertaken, with items addressing the WHO International Health Regulations. Nonprobabilistic sampling was used, and descriptive analyses were conducted., Results: Responses from 43 services in 12 countries were analyzed. Half of respondents were doctors (53%), and services were predominantly hospital based (84%). All but one services had modified at least one procedure to respond to COVID-19. Do Not Resuscitate policies were modified by a third (30%) and unavailable for a fifth (23%). While handwashing facilities at points of entry were available (98%), a third had concerns over accessing disinfectant products (37%), soap (35%), or running water (33%). The majority had capacity to use technology to provide remote care (86%) and contact lists of patients and staff (93%), though only two-fifths had relatives' details (37%). Respondents reported high staff anxiety about becoming infected themselves (median score 8 on 1-10 scale), but only half of services had a stress management procedure (53%). Three-fifths had plans to support triaging COVID-19 patients (60%) and protocols to share (58%)., Conclusion: Participating services have prepared to respond to COVID-19, but their capacity to respond may be limited by lack of staff support and resources. We propose recommendations to improve service preparedness and relieve unnecessary suffering., (Copyright © 2020. Published by Elsevier Inc.)

Context: Palliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown., Objectives: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic., Methods: We developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted., Results: About 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings., Conclusion: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: To explore ways in which occupational justice and social inclusion are conceptualised, defined and operationalised in highly stigmatised and chronic conditions of mental illness and HIV., Design: This scoping review protocol followed Arksey and O'Malley's (2005) Scoping Review Framework., Data Sources and Eligibility: The following databases were searched for the period January 1997 to January 2019: Medline via PubMed, Scopus, Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Africa-Wide Information, Humanities International Complete, Web of Science, PsychInfo, SocINDEX and grey literature.Eligible articles were primary studies, reviews or theoretical papers which conceptualised, defined and/or operationalised social inclusion or occupational justice in mental illness or HIV., Study Appraisal and Synthesis: We undertook a three-part article screening process. Screening and data extraction were undertaken independently by two researchers. Arksey's framework and thematic analysis informed the collation and synthesis of included papers., Results: From 3352 records, we reviewed 139 full articles and retained 27 for this scoping review. Definitions of social inclusion and occupational justice in the domains of mental illness and HIV were heterogeneous and lacked definitional clarity. The two concepts were conceptualised as either processes or personal experiences, with key features of community participation, respect for human rights and establishment and maintenance of healthy relationships. Conceptual commonalities between social inclusion and occupational justice were premised on social justice., Conclusions: To address lack of clarity, we propose further and concurrent exploration of these concepts, specifically with reference to persons with comorbid mental health disorders such as substance use disorders and HIV living in low-income countries. This should reflect contextual realities influencing community participation, respect for human rights and meaningful occupational participation. From this broadened understanding, quantitative measures should be applied to improve the standardisation of measurements for occupational justice and social inclusion in policy, research and practice., Competing Interests: Competing interests: None., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Purpose of Review: Despite the rising prevalence of heart failure in Africa, it remains unclear what supportive and palliative care services are required to meet patient needs. This review highlights recent contributions to knowledge of the supportive and palliative care needs of heart failure patients in Africa., Recent Findings: Multiple epidemiological studies demonstrate the population-level burden of heart failure in Africa, characterized by low levels of ischaemic heart disease and a young mean patient age. However, few studies have addressed patients' specific palliative and supportive care needs. Only one recent published study investigated the quality of life of heart failure patients in Africa, and although conference abstracts suggest more research is forthcoming, these remain scarce. For service implementation, research is again sparse, but promising recent developments, including a hospital-based palliative care service for organ failure patients and a community-based programme to diagnose and manage heart failure, present future research avenues., Summary: Despite advances in epidemiological knowledge, very little research has investigated the illness experience and multidimensional needs of individuals. Obtaining this evidence through culturally sensitive research is essential to future development and testing of new and existing palliative care services for heart failure patients in Africa., Video Abstract: http://links.lww.com/COSPC/A9

Aim: To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care., Methods: Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS)., Results: The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians., Conclusions: In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).

People with HIV have a high burden of pain and physical, psychological, and social difficulties that can be managed effectively with palliative care. However, most individuals do not have access to this type of care. Palliative care is holistic patient-centred management of life-limiting progressive disorders and is recognised by WHO as an essential element of HIV care, from diagnosis to end of life. Historically, palliative care and HIV care were linked closely, but misconceptions divide the two disciplines today. Palliative care can augment patients' outcomes and boost adherence to antiretroviral treatments and life expectancy. In much of the world, services providing palliative care are isolated, and most individuals in need have no access to this care. The commitment to provide palliative care for all people with HIV can be fulfilled if clinical workers are trained in this therapeutic approach and if care is delivered at community level, with support for family caregivers., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Aim: To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care., Methods: Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS)., Results: The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians., Conclusions: In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).

Background: Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures., Methods: A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire., Results: Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs., Conclusions: Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care.