Evaluating a vertical nurse-led service in the integration of palliative care in a tertiary academic hospital.

Background: Groote Schuur Hospital is a large Academic Hospital in South Africa that is in the process of integrating palliative care (PC) via a vertical nurse-led doctor-supported (VNLDS) service that was initially established to deliver clinical care. PC integration should occur across multiple dimensions and may result in variable degrees of integration between levels of the healthcare system. This research evaluates the VNLDS through a theory-driven evaluation to describe how the service affected integration. Methods: A mixed-method sequential design consisting of a narrative literature review on the theory of integration and PC, retrospective quantitative data from a PC service delivery database, qualitative data from semi-structured interviews and document analyses. It was structured in three phases which assisted in confirming and expanding the data. Statistical analyses, deductive thematic coding and documentary analyses were conducted according to the conceptual framework of PC integration. Results: The PC integration process was facilitated in the following ways: (i) the service provided good clinical PC; (ii) it was able to integrate on a professional level into specific diseases, such as cancer but not in all diseases; (iii) developing organizational structures within the service and (iv) the observed benefit of good clinical care increased the value stakeholders assigned to PC, thereby driving the adoption of PC. However, there are still clinicians who do not refer to PC services. This gap in referral may be grounded in assumptions and misconceptions about PC, especially at the organizational level. Discussion: Observed PC service delivery is core to integrating PC across the healthcare system because it challenges normative barriers. However, the VNLDS could not achieve integration in leadership and governance, education and hospital-wide guidelines and policies. Whole system integration, foregrounding organizational commitment to PC excellence, is core to integrating PC. Conclusion: The VNLDS service has effectively linked PC in specific disease profiles and normalized the PC approach where healthcare workers observed the service. These integrational gaps may be grounded in assumptions and misconceptions about PC, especially at the organizational level.

How does a nurse led palliative care service affect palliative care integration in a big teaching hospital? This article evaluates a nurse led doctor supported service in providing palliative care and how it affected the integration of palliative care in an Academic Hospital in South Africa. This study will help us understand the goals of integration, the extent of integration achieved by this service and how and why it was achieved or not.

The influence of context on the implementation of integrated palliative care in an academic teaching hospital in South Africa.

Background: Palliative care (PC) has been integrated to a limited extent in the South African healthcare system. Contextual factors may be a pivotal influence in this integration. Objectives: This study aims to explore contextual factors that are possibly influencing the integration or lack thereof in an academic teaching hospital (ATH). Design: A mixed-method study was conducted in a large ATH in South Africa. Methods: The mixed methods were conducted in parallel and then merged. Findings were integrated to describe the contextual factors influencing PC integration, to develop a timeline of implementation and assess the probable influence of context on the integration process. The mixed-methods phases included a narrative review of published literature related to health systems, integration of health interventions and PC in teaching hospital settings; followed by interviews, documentary and routine data analyses. Semi-structured interviews with purposively sampled participants provided the qualitative data. Primary national, provincial and organizational documents expanded the contextual phenomena and corroborated findings. Routine hospital admission and mortality data was statistically analysed to expand further and corroborate findings. All qualitative data was thematically analysed using deductive coding, drawing from the aspects of the contextual dimensions of integration. Results: Enabling contextual factors for local PC integration were global and local advocacy, demonstrated need, PC being a human right, as well as the personal experiences of hospital staff. Impeding factors were numerous misconceptions, PC not valued as a healthcare priority, as well as limitations in functional elements necessary for PC integration: national and regional political support, leadership at all levels and sustainable financing. Conclusion: The normative and functional contextual aspects interplay at macro, meso and micro levels positively and negatively. How stakeholders understand and value PC directly and indirectly impacts on PC integration. Strategic interventions such as mandatory education are required to ensure PC integration. The health system is dynamic, and understanding the context in which the health system functions is core to the integration of PC. This may assist in developing integration strategies to address PC integration and the transferability of these strategies.

How the context influences a new palliative care intervention Palliative care is being integrated in a big hospital in South Africa. However, there are many contextual factors that influence this integration. These factors are both structural aspects like policies, but also how role players' values and understand of palliative care. It is important to know what these factors are and how these factors influence integration. This study describes the factors and how they influence palliative care integration.

High Prevalence and Burden of Physical and Psychological Symptoms in a Chronic Obstructive Pulmonary Disease Population in Primary Care Settings in South Africa.

Background: Many deaths globally are attributable to non-communicable disease, and four-fifths of these deaths are in low- and middle-income countries. Globally, COPD is currently the third leading cause of mortality. Research Question: 1) To determine the prevalence and burden of symptoms and concerns, and 2) determine predicting factors of symptom burden among patients with COPD. Methods: A cross-sectional survey was conducted at eight primary care sites in Western Cape. We collected socio-demographic data (age, gender, smoking status, number of missed doses of prescribed medication in the last seven days) and clinical data (PEF and KPS). The Memorial Symptom Assessment Scale (MSAS), the Medical Outcomes Study, Social Support Survey (MOS-SSS), the London Chest Activity of Daily Living Scale (LCADLS) and the COPD Assessment Test (CAT) (impairment on person's life) were administered to patients. We conducted ordered logistic regression analysis to assess factors associated with the burden of symptoms. MSAS subscales: 1) Global symptom distress index, 2) physical symptom distress and 3) psychological symptom distress were dependent outcomes. We constructed three ordinal logistic regression models for each of the three subscales. Covariates were MOS-SSS, LCADLS, CAT, demographic and clinical variables. Results: We recruited n=387 patients, mean age 59.5 years, 53.0% female. In multivariate analysis, each of the three models (ie, global, psychological and physical symptom distress) was positively associated with impairment on person's life p<0.001, difficulty to perform activities of daily living p<0.001, and low social support p<0.001. Old age was associated with lower global symptom distress (p=0.004), psychological and (0.014) physical distress (0.005). Missing 1 or more doses of medication was associated with higher levels of global (0.004) and physical (0.005) symptom distress. Interpretation: The high prevalence and burden of physical and psychological symptoms provides strong evidence of the need for integrating person-centred assessment and management of symptoms in primary care settings.

Emergency medical services and palliative care: a scoping review.

OBJECTIVES: The aim of this study was to map existing emergency medical services (EMS) and palliative care literature by answering the question, what literature exists concerning EMS and palliative care? The sub-questions regarding this literature were, (1) what types of literature exist?, (2) what are the key findings? and (3) what knowledge gaps are present? DESIGN: A scoping review of literature was performed with an a priori search strategy. DATA SOURCES: MEDLINE via Pubmed, Web of Science, CINAHL, Embase via Scopus, PsycINFO, the University of Cape Town Thesis Repository and Google Scholar were searched. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Empirical, English studies involving human populations published between 1 January 2000 and 24 November 2022 concerning EMS and palliative care were included. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers screened titles, abstracts and full texts for inclusion. Extracted data underwent descriptive content analysis and were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guidelines. RESULTS: In total, 10 725 articles were identified. Following title and abstract screening, 10 634 studies were excluded. A further 35 studies were excluded on full-text screening. The remaining 56 articles were included for review. Four predominant domains arose from included studies: (1) EMS' palliative care role, (2) challenges faced by EMS in palliative situations, (3) EMS and palliative care integration benefits and (4) proposed recommendations for EMS and palliative care integration. CONCLUSION: EMS have a role to play in out-of-hospital palliative care, however, many challenges must be overcome. EMS provider education, collaboration between EMS and palliative systems, creation of EMS palliative care guidelines/protocols, creation of specialised out-of-hospital palliative care teams and further research have been recommended as solutions. Future research should focus on the prioritisation, implementation and effectiveness of these solutions in various contexts.

Emergency medical services and palliative care: protocol for a scoping review.

INTRODUCTION: The purpose of emergency medical services (EMS) is to preserve life and limb in emergency situations. Palliative care, however, is not concerned with 'life-saving' measures, but the prevention and relief of suffering. While these care goals appear to conflict, EMS and palliative care may be complementary if integrated. The aim of this scoping review is to map existing literature concerning EMS and palliative care by identifying literature types, extracting key findings and noting limitations using descriptive analysis. METHODS AND ANALYSIS: The framework of Arksey and O'Malley will direct this review. The following databases will be searched: MEDLINE via PubMed, Web of Science, CINAHL, Embase and PsycINFO. In addition, the University of Cape Town Thesis Repository and Google Scholar will be searched for relevant grey literature. Empirical studies concerning EMS and palliative care published between January 2000 and September 2021 will be included. Article selection will be performed and presented in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews checklist. Extracted data from included articles will undergo descriptive analysis with findings being reported in a discussion format. ETHICS AND DISSEMINATION: This review will identify and describe existing literature concerning EMS and palliative care, highlighting key findings and knowledge gaps in the subject area. Findings will be disseminated to relevant stakeholders through peer-reviewed, open-access journal publication. As no participants will be involved and selected literature is publicly available, no ethical approval will be required.

Position paper on undergraduate Palliative Medicine education for doctors in South Africa.

BACKGROUND:  Basic palliative care teaching should be included in training curricula for health care providers (HCPs) at all levels of the health service to ensure that the goal set by the South African (SA) National Policy Framework and Strategy for Palliative Care, to have an adequate number of appropriately trained HCPs in South Africa, is achieved. Furthermore, palliative learning objectives for nurses and doctors should be standardised. Many SA medical schools have integrated elements of Palliative Medicine (PM) teaching into undergraduate medical training programmes for doctors; however, the degree of integration varies widely, and consensus and standardisation of the content, structure and delivery of such PM training programmes are not yet a reality. AIM:  This joint position paper aims to describe the current state of undergraduate medical PM teaching in South Africa and define the PM competencies required for an SA generalist doctor. SETTING:  Palliative Medicine programme leads and teachers from eight medical schools in South Africa. METHODS:  A survey exploring the structure, organisation and content of the respective medical undergraduate PM programmes was distributed to PM programme leads and teachers. RESULTS:  Responses were received from seven medical schools. Through a process of iterative review, competencies were defined and further grouped according to suitability for the pre-clinical and clinical components of the curriculum. CONCLUSION:  Through mapping out these competencies in a spiralled medical curriculum, the authors hope to provide guidance to medical curriculum designers to effectively integrate PM teaching and learning into current curricula in line with the goals of the SA National Policy Framework and Strategy on Palliative Care (NPFSPC).

Developing a global practice-based framework of person-centred care from primary data: a cross-national qualitative study with patients, caregivers and healthcare professionals.

INTRODUCTION: Person-centred care (PCC) is internationally recognised as a critical component of high-quality healthcare. However, PCC evolved in a few high-income countries and there are limited data exploring this concept across the vast majority of countries which are low- and middle-income. This study aimed to appraise and adapt a PCC model across three serious physical conditions in three middle-income countries and generate an evidence-based framework and recommendations for globally relevant PCC. METHODS: Cross-national, cross-sectional qualitative study. In depth, semistructured interviews conducted with: advanced cancer patients in Jordan (n=50), their caregivers (n=20) and healthcare professionals (HCPs) (n=20); chronic obstructive pulmonary disease patients in South Africa (n=22), their caregivers (n=19) and HCPs (n=22); heart failure patients in Thailand (n=14), their caregivers (n=10) and HCPs (n=12). Data were analysed using framework analysis. Santana et al's PCC model (2018) and Giusti et al's systematic review (2020) were used to construct an a priori coding frame for deductive analysis, with additional inductive coding for coding that did not fit the frame. RESULTS: The findings both reveal specific practical actions that contribute towards delivering PCC and highlight new cross-national domains of person-centredness: interdependency and collectivism; bringing care into the home and community; equity and non-discrimination; addressing health and illness within the context of limited resources; and workforce well-being. CONCLUSION: The data suggest that PCC requires particular structural features of the healthcare system to be in place, such as professional education in PCC values and partnerships with community-based workers. These structures may better enable PCC processes, including tailored information sharing and providing genuine opportunities for patients to do the things that matter to them, such as making informed care decisions and sustaining social relationships. PCC must also accommodate a collectivist perspective and support the well-being of the workforce.

A systematic review of impact of person-centred interventions for serious physical illness in terms of outcomes and costs.

BACKGROUND: Person-centred care (PCC) is being internationally recognised as a critical attribute of high-quality healthcare. The International Alliance of Patients Organisations defines PCC as care that is focused and organised around people, rather than disease. Focusing on delivery, we aimed to review and evaluate the evidence from interventions that aimed to deliver PCC for people with serious physical illness and identify models of PCC interventions. METHODS: Systematic review of literature using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched AMED, CINAHL, Cochrane Library, Embase, Medline, PsycINFO, using the following key concepts: patient/person-centred care, family centred care, family based care, individualised care, holistic care, serious illness, chronic illness, long-term conditions from inception to April 2022. Due to heterogeneity of interventions and populations studied, narrative synthesis was conducted. Study quality was appraised using the Joanna Briggs checklist. RESULTS: We screened n=6156 papers. Seventy-two papers (reporting n=55 different studies) were retained in the review. Most of these studies (n=47) were randomised controlled trials. Our search yielded two main types of interventions: (1) studies with self-management components and (2) technology-based interventions. We synthesised findings across these two models:Self-management component: the interventions consisted of training of patients and/or caregivers or staff. Some studies reported that interventions had effect in reduction hospital admissions, improving quality of life and reducing costs of care.Technology-based interventions: consisted of mobile phone, mobile app, tablet/computer and video. Although some interventions showed improvements for self-efficacy, hospitalisations and length of stay, quality of life did not improve across most studies. DISCUSSION: PCC interventions using self-management have some effects in reducing costs of care and improving quality of life. Technology-based interventions improves self-efficacy but has no effect on quality of life. However, very few studies used self-management and technology approaches. Further work is needed to identify how self-management and technology approaches can be used to manage serious illness. PROSPERO REGISTRATION NUMBER: CRD42018108302.

A Delphi study to guide the development of a clinical indicator tool for palliative care in South Africa.

BACKGROUND:  The South African National Policy Framework and Strategy on Palliative Care (NPFSPC) recommends that when integrating palliative care (PC) into the health system, a PC indicators tool should be used to guide clinicians to recognise a patient who should receive PC. The policy document recommends 'a simple screening tool developed for use in South Africa that would assist healthcare professionals (HCPs) to recognise patients who may have unmet palliative care needs'. AIM:  This research study sought to develop South African consensus on indicators for PC to assist clinicians to recognise a patient in need of PC. SETTING:  The South African healthcare setting. METHODS:  A Delphi study was considered suitable as a methodology to develop consensus. The methodology was based on the Conducting and REporting of DElphi studies (CREDES) guidance on Delphi studies to ensure rigour and transparency in conducting and reporting. Six different Delphi rounds were used to develop consensus. Each round allowed participants to anonymously rate statements with predefined rating scales. RESULTS:  Cognisant of the disparities in healthcare provision and access to equitable healthcare in South Africa, the expert advisory group recommended, especially for South Africa, that 'this tool is for deteriorating patients with an advanced life-limiting illness where all available and appropriate management for underlying illnesses and reversible complications has been offered'. The expert advisory group felt that disease-specific indicators should be described before the general indicators in the South African indicators tool, so all users of the tool orientate themselves to the disease categories first. This study included three new domains to address the South African context: trauma, infectious diseases and haematological diseases. General indicators for PC aligned with the original Supportive and Palliative Care Indicators Tool (SPICT) tool. CONCLUSION:  The Supportive and Palliative Care Indicators Tool for South Africa (SPICTTM-SA) is a simple screening tool for South Africa that may assist HCPs to recognise patients who may have unmet PC needs.

Symptom prevalence and burden, and the risk of depression among patients with advanced cancer attending two South African oncology units.

BACKGROUND: The incidence of cancer is predicted to increase globally by 47% between 2020 and 2040, largely in low and middle-income countries. The World Health Organisation and World Health Assembly recognise palliative care as an essential component of cancer care. The evidence of palliative care needs among South African oncology patients is sparse. This study aimed to describe the prevalence and burden of symptoms and the risk of depression amongst oncology patients with stage 3 or 4 cancer. METHODS: Demographic and clinical data were collected and the Memorial Symptom Assessment Scale Short Form was used to measure the 7-day period prevalence of 28 physical and 4 psychological symptoms of patients receiving oncology care. The Centre for Epidemiological Studies Depression Scale was used to measure the risk of depression. RESULTS: A total of N = 343 patients were recruited, of which n = 229 (66.8%) had stage 4 cancer. The mean number of symptoms was 11.56 (SD = 5.86). Pain and feeling drowsy/tired were the two most prevalent symptoms. N = 66 (19.3%) were at risk of mild depression and n = 27 (7.9%) for major depression. DISCUSSION: Pain and depression persist in advanced cancer care despite the advances in policy and clinical education. Health services research must now focus on how to enact this in routine practice.

HeAlth System StrEngThening in four sub-Saharan African countries (ASSET) to achieve high-quality, evidence-informed surgical, maternal and newborn, and primary care: protocol for pre-implementation phase studies.

To achieve universal health coverage, health system strengthening (HSS) is required to support the of delivery of high-quality care. The aim of the National Institute for Health Research Global Research Unit on HeAlth System StrEngThening in Sub-Saharan Africa (ASSET) is to address this need in a four-year programme, with three healthcare platforms involving eight work-packages. Key to effective health system strengthening (HSS) is the pre-implementation phase of research where efforts focus on applying participatory methods to embed the research programme within the existing health system. To conceptualise the approach, we provide an overview of the key methods applied across work-package to address this important phase of research conducted between 2017 and 2021.Work-packages are being undertaken in publicly funded health systems in rural and urban areas in Ethiopia, Sierra Leone, South Africa, and Zimbabwe. Stakeholders including patients and their caregivers, community representatives, clinicians, managers, administrators, and policymakers are the main research participants.In each work-package, initial activities engage stakeholders and build relationships to ensure co-production and ownership of HSSIs. A mixed-methods approach is then applied to understand and address determinants of high-quality care delivery. Methods such as situation analysis, cross-sectional surveys, interviews and focus group discussions are adopted to each work-package aim and context. At the end of the pre-implementation phase, findings are disseminated using focus group discussions and participatory Theory of Change workshops where stakeholders from each work package use findings to select HSSIs and develop a programme theory.ASSET places a strong emphasis of the pre-implementation phase in order to provide an in-depth and systematic diagnosis of the existing heath system functioning, needs for strengthening and stakeholder engagement. This common approach will inform the design and evaluation of the HSSIs to increase effectiveness across work packages and contexts, to better understand what works, for whom, and how.

The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review.

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

Improving psychological outcomes for orphans living with HIV in Tanzania through a novel intervention to improve resilience: findings from a pilot RCT.

Parental death and HIV are associated with poor mental health for orphans in sub-Saharan Africa. This study aimed to evaluate a theory-based intervention for orphaned children on treatment in Tanzania, in terms of feasibility, acceptability and preliminary outcomes. A pilot RCT with nested focus group (FGD) allocated 48 children to usual care or residential "Memory Work Therapy". Children completed outcome measures at T0 (baseline), T1 (2 weeks following intervention) and T2 (9 weeks from T0). Forty percent of eligible children assented. T1 intervention effects were found on all total measures: Brief Symptom Inventory d = 0.99, p < .001; Rosenberg Self Esteem Scale d = 0.65, p = .001; Strengths and Difficulties Questionnaire d = 0.64, p = .002; Self-efficacy questionnaire for children both "social" and "emotional" subscales, d = 0.54, p = .008 and d = 0.63, p = .002, respectively. At T2, significant effects remained for all measures and SES effect increased from medium to large (T1 = 0.65, T2 = 1.33). FGD data found children valued a calm environment that met their basic needs, enabling them to reflect, highlight support resources, and strengthen ability to recognize personal skills. The intervention has strong feasibility and acceptability, with no attrition or missing data. Memory Work Therapy has high potential effect size and should be tested in a fully powered trial. Clinical trials.gov NCT02180750.

Access to Pain Management as a Human Right.

The concept of access to pain management as a human right has gained increasing currency in recent years. Commencing as individual advocacy, it was later embraced by the disciplines of pain medicine and palliative care and by mainstream human rights organizations.Today, United Nations and regional human rights bodies have accepted the concept and incorporated it into key human rights reports, reviews, and standards. We review the foundations in law of this right and the obligations that flow from it to governments. We analyze the nature and content of the obligation in the context of acute, chronic nonmalignant and cancer pain.Finally, we examine this right in light of the twin crises of inadequate access to pain management and the opioid crisis in the United States and other nations.

Access to palliative care in HIV services in Cape Town.

This paper examines access to palliative care (PC) for patients with HIV, part of a study investigating access to PC for patients with chronic diseases. Studies highlight gaps in symptom management and psychosocial care for People living with HIV (PLHIV) and thus the need to integrate PC into HIV services. The aim of the study was to describe the access of patients with advanced chronic illness to PC services. METHODOLOGY: this was a prospective cohort study conducted over six months. Participants were recruited from patients living with HIV with CD4 counts of <200 cells/mm3, patients with advanced cancer and patients diagnosed with motor neurone disease. All HIV patients were on anti-retroviral treatment. Participants responded to a questionnaire including the APCA African Palliative Outcome Scale (POS), a validated palliative outcome scale, as a measure of care at first visit and telephonically once a month for 6 months. RESULTS: Seventy-nine HIV patients were recruited to the study. During the study 6 PLHIV died and no HIV patients were referred to PC services. A significant finding is that most patient outcomes improved for HIV patients. Pain reduced from 1.83 to 0.86; symptoms reduced from 2.41 to 0.49; worry reduced from 2.17 to 0.35. Spiritual well-being also improved - life worthwhile from 3.56 to 4.74 and at peace from 3.63 to 4.86; all measures out of 5. A small sub-set of this cohort (7.7%) experienced high pain levels not controlled during the study. DISCUSSION: Few patients were referred to PC services despite 6 HIV deaths during the study. Patients attending HIV clinics received good PC in conjunction with HAART, suggesting that PC appears to be well integrated into routine HIV care. It is suggested that patients with severe problems including those who died would have benefitted from referral to PC.

Palliative Care in South Africa.

The Hospice Palliative Care Association (HPCA) was established in 1987 by hospices in South Africa who felt the need for a national body to share best practices and to promote palliative care services in South Africa. HPCA supports member hospices in providing palliative care to people of any age with a life-limiting condition. HPCA has the further aim to ensure access to palliative care in settings other than member hospices. Many projects were launched over the years to influence policy, and to educate medical practitioners, nurses, social workers, theologians, and community caregiver; and to develop services. A key initiative was the development of a mentorship program to assist organizations to develop accredited palliative care services in South Africa. This article highlights some of the HPCA projects funded over the years by the Open Society Foundations' International Palliative Care Initiative.

The Prevalence and Associated Distress of Physical and Psychological Symptoms in Patients With Advanced Heart Failure Attending a South African Medical Center.

BACKGROUND: Despite the high prevalence of heart failure in low- and middle-income countries, evidence concerning patient-reported burden of disease in advanced heart failure is lacking. OBJECTIVE: The aim of this study is to measure patient-reported symptom prevalence and correlates of symptom burden in patients with advanced heart failure. METHODS: Adult patients diagnosed with New York heart Association (NYHA) stage III or IV heart failure were recruited from the emergency unit, emergency ward, cardiology ward, general medicine wards, and outpatient cardiology clinic of a public hospital in South Africa. Patients were interviewed by researchers using the Memorial Symptom Assessment Scale-Short Form, a well-validated multidimensional instrument that assesses presence and distress of 32 symptoms. RESULTS: A total of 230 patients (response, 99.1%), 90% NYHA III and 10% NYHA IV (12% newly diagnosed), with a mean age of 58 years, were included. Forty-five percent were women, 14% had completed high school, and 26% reported having no income. Mean Karnofsky Performance Status Score was 50%. Patients reported a mean of 19 symptoms. Physical symptoms with a high prevalence were shortness of breath (95.2%), feeling drowsy/tired (93.0%), and pain (91.3%). Psychological symptoms with a high prevalence were worrying (94.3%), feeling irritable (93.5%), and feeling sad (93.0%). Multivariate linear regression analyses, with total number of symptoms as dependent variable, showed no association between number of symptoms and gender, education, number of healthcare contacts in the last 3 months, years since diagnosis, or comorbidities. Increased number of symptoms was significantly associated with higher age (b = 0.054, P = .042), no income (b = -2.457, P = .013), and fewer hospitalizations in the last 12 months (b = -1.032, P = .017). CONCLUSIONS: Patients with advanced heart failure attending a medical center in South Africa experience high prevalence of symptoms and report high levels of burden associated with these symptoms. Improved compliance with national and global treatment recommendations could contribute to reduced symptom burden. Healthcare professionals should consider incorporating palliative care into the care for these patients.

Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa.

BACKGROUND: Despite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS). METHODS: Patients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman's rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed. RESULTS: 315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman's rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721 (all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J: 0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower agreement between verbal and both hand and face scoring methods in the Ugandan sample. Compared to the verbal scale the accuracy of predicting high pain/symptoms was H > F > J (0.96-0.89) in ROC analysis. CONCLUSIONS: Hands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score.