Primary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes.

BACKGROUND: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent. AIM: To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs. DESIGN: A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries. DATA SOURCES: Medline, Psychinfo, Global Health, Embase and CINAHL. RESULTS: Thirty-five publications were included. Nearly half took place in Asia (n = 16, 45.7%). We identified five dominant typologies of primary palliative care, including delivery in primary care clinics by multidisciplinary healthcare teams and palliative care specialists, in people's homes by healthcare professionals and volunteers and in tertiary healthcare facilities by generalists. We designed a process model for how these models operate within larger health systems and identified barriers and facilitators to implementing primary palliative care in this context. CONCLUSION: Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need.

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.

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.

The prevalence and burden of pain and other symptoms among South Africans attending highly active antiretroviral therapy (HAART) clinics.

BACKGROUND: Since the advent of antiretrovirals, HIV disease has largely come to be considered a chronic disease for those able to access treatment. As such, the concept of 'living well' with HIV is important. Increasing evidence suggests a high symptom burden in HIV that persists in the presence of treatment. OBJECTIVES: Our study aimed to measure the prevalence and burden of pain and other physical and psychological symptoms among South African HIV-positive patients attending highly active antiretroviral therapy (HAART) clinics. METHODS: The study design was a cross-sectional survey. Simple random sampling was used to recruit 385 adult participants. RESULTS: The sample had a median age of 40 years (Q1 - Q3=33 - 46) and 98.4% were on HAART. The mean latest CD4 count for the participants was 355.06±219/mm³. The mean number of symptoms of the 32 symptoms on the MSAS-SF experienced by participants was 10.24±5.71 (range 1 - 28). All 4 psychological symptoms were in the top 10 most prevalent symptoms, with feeling sad being the most prevalent symptom overall. CONCLUSIONS: The high prevalence of symptoms and the high symptom burden experienced by the participants in this survey suggest inadequate symptom control and highlight the palliative care needs of an ambulant patient population already on HAART. Extension of life without reasonable efforts to also address the patient's quality of life is not ethically justifiable. In addition, more research appears to be required to answer whether these findings are associated with sub-optimal HAART adherence.