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).http://www.phcfm.orgam2023Family Medicin

Redefining palliative care-a new consensus-based definition

Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span

Redefining Palliative CaredA New Consensus-Based Definition

Context. The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective. The main objective of this article is to present the research behind the new definition. Methods. The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results. The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion. Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span

Assessing the need for spiritual care and evaluating the usefulness of a spiritual assessment tool in a multicultural population of patients with life threatening illnesses in South Africa

Includes bibliographical references (leaves 69-71).To assess the need for spiritual care in a multicultural population of patients with life threatening illnesses in South Africa and to evaluate the usefulness of a spiritual assessment tool in introducing spiritual care into the consultation

Local Sociocultural Practice Specific Financial Toxicity Assessment Tool for Cancer: An Emerging Need

It is relevant to study the financial toxicity of cancer to address it. However, the existing tools fail to capture the financial destruction of cancer on patients and their families in resource-limited countries. The authors discuss the need for a new tool in this article

Validating an instrument for direct patient reporting of chemotherapy toxicity among South African cancer patients

172Background: In the USA, use of patient-reported outcome (PRO) instruments for monitoring treatment toxicity has been associated with improved patient quality of life (QoL) and clinical outcomes. No similar PRO tools exist for the African cancer patients. We aimed to validate the Patient Reported Symptoms – South Africa (PRS-SA) survey, a novel PRO tool designed to measure subjective stress and symptoms in South African (SA) cancer patients receiving chemotherapy. Methods: We enrolled patients receiving chemotherapy at the oncology clinic at Charlotte Maxeke Hospital, Johannesburg. At 3 separate visits, participants completed the PRS-SA survey, which allowed reporting of stress on a numerical ranking scale (range 0-10) and severity of 11 common chemotherapy-related symptoms (i.e., pain, fatigue, fever, dyspnea, cough, mucositis, nausea, vomiting, diarrhea, constipation, and neuropathy) using lay language descriptions corresponding to Common Terminology Criteria for Adverse Events grades. They simultaneously completed the EORTC Core Quality of Life Questionnaire (QLQ-C30), the Global Impression of Change (GIC) questionnaire, and the Hospital Anxiety and Depression Scale (HADS). All instruments were offered in English and isiZulu. We constructed a receiver operator characteristics (ROC) curve for stress scale values and a total HADS score ≥15, representing clinical depression/anxiety. We evaluated construct validity for each symptom item by comparing symptom severity to the simultaneous QLQ-C30 summary score (Pearson correlation tests) and ECOG performance status (PS) (Mann-Whitney U tests). We assessed symptom item responsiveness by comparing change in severity across visits to change in QLQ-C30 summary score and comparing standardized mean symptom scores in those reporting negative, no, or positive change on the GIC using a Jockheere-Terpstra trend test. Results: Overall, 196 participants completed instruments at visit 1, 173 at visit 2, and 150 at visit 3. Area under the ROC curve for stress score was 0.76, and a score of 4 had 82% sensitivity and 55% specificity for clinical depression/anxiety. All symptom items showed construct validity by association with QLQ-C30 score (all p-values < 0.0001), and all but mucositis showed validity by association with ECOG PS (highest p = 0.03). All but cough showed responsiveness to change in QLQ-C30 score (highest p = 0.045), and the standardized mean in symptom scores demonstrated a trend across negative, neutral, and positive GIC scores (p = 0.03). Conclusions: In SA cancer patients, the PRS-SA’s stress scale behaves similarly to the distress thermometer in other populations, and the symptom items demonstrated construct validity and responsiveness. Further research should address implementation of the PRS-SA in the clinical setting for monitoring cancer treatment-related toxicity and its impact of patients’ QoL and outcomes

Associations between HIV infection status, psychosocial factors, and adjuvant endocrine therapy adherence among South African women with early-stage breast cancer

522 Background: South African (SA) women living with comorbid estrogen receptor positive (ER+) breast cancer (BC) and HIV have higher mortality than other SA women with ER+ BC. We aimed to evaluate for associations between HIV status, psychosocial factors, and adjuvant endocrine therapy (AET) adherence as a potential contributor to this disparity. Methods: From Chris Hani Baragwanath Hospital, Johannesburg, we enrolled adult women with stage I-III ER+ BC in remission and currently prescribed tamoxifen or an aromatase inhibitor to a prospective cohort study. We performed AET pill counts at enrollment, 12 weeks, and 24 weeks, and calculated adherence ratios from the difference in pills between visits divided by the number of days between visits. Women completed questionnaires on sources of social support, beliefs about medication, health literacy, and self-efficacy at enrollment and questionnaires about mental health (depression, anxiety, and acute stress) symptom burden and AET-related side effects at the 12- and 24-week visits. We also collected household wealth data and clinical data on BC and HIV. AET adherence ratios were compared between women with and without comorbid HIV using Wilcoxon rank sum testing. We also used structural equation modeling techniques to refine and evaluate an a priori model of AET adherence with latent variables for mental health, socioeconomic (SES) status, healthcare savvy, and AET side effect burden and subgroup analyses of the resulting model in women with and without HIV. Results: Between April 26, 2022, and July 11, 2023, we enrolled 239 women, 63 (26.4%) of whom had co-morbid HIV. Adherence data was available from 106 women at 12 and 24 weeks, from 22 women at 12 weeks only, and from 111 women at 24 weeks only. Comparing women with and without HIV, median AET adherence ratio was 0.88 vs 0.89, respectively (p = 0.65). Our final model of AET adherence achieved good fit (comparative fit index = 0.96, RMSEA 90% CI: 0.03-0.06). In the full cohort, SES quintile showed a trend towards association with AET adherence (β 0.02, SE 0.01, p=0.09); mental health, healthcare savvy, and side effect burden latent variables were not significantly associated with adherence. In the subgroup of women living with HIV, SES quintile (β 0.04, SE 0.02, p=0.08) and mental health (β -0.02, SE 0.01, p=0.10) showed trends toward association with adherence; these relationships did not persist for women without HIV. Conclusions: HIV status is not predictive of AET adherence among SA women with ER+ BC, but in women with both diagnoses, decreasing SES status and increasing mental health symptoms trended towards an association with decreased adherence. Interventions to improve the mental health of SA breast cancer patients living with HIV may promote AET adherence

Validating an Instrument for Direct Patient Reporting of Distress and Chemotherapy-Related Toxicity among South African Cancer Patients

Patient-reported outcome measures (PROM) for monitoring treatment toxicity improve quality of life (QoL) and clinical outcomes. However, no such PROMs exist for sub-Saharan African cancer patients. We aimed to validate the Patient Reported Symptoms-South Africa (PRS-SA) survey, a novel PROM for measuring distress and chemotherapy-related symptoms in South African cancer patients. We enrolled patients at the oncology clinic at Charlotte Maxeke Hospital, Johannesburg. At three separate visits, participants simultaneously completed the PRS-SA survey and several previously validated questionnaires. We constructed a receiver operator characteristics curve for distress levels predicting a Hospital Anxiety and Depression Scale (HADS) score &ge;15. We evaluated construct validity for symptom items by comparing severity to the EORTC Core Quality of Life Questionnaire (QLQ-C30) summary score (Pearson correlation tests) and ECOG performance status (Mann&ndash;Whitney U tests). We assessed symptom item responsiveness by comparing change in severity to change in QLQ-C30 summary score and comparing standardized mean scores with negative, no, or positive change on the Global Impression of Change (GIC) questionnaire (Jockheere&ndash;Terpstra trend test). Overall, 196 participants with solid tumors completed instruments. A distress score of 4 had 82% sensitivity and 55% specificity for clinical depression/anxiety. All symptom items showed construct validity by association with either QLQ-C30 score or performance status (highest p = 0.03). All but cough showed responsiveness to change in QLQ-C30 score (highest p = 0.045). In South African cancer patients, the PRS-SA&rsquo;s stress scale behaves similarly to the distress thermometer in other populations, and the symptom items demonstrated construct validity and responsiveness. Of note, 46% and 74% of participants who completed the PRS-SA in English or isiZulu, respectively, required assistance reading half or more of the instrument

Illness Understanding and End-of-Life Care Communication and Preferences for Patients With Advanced Cancer in South Africa

Purpose: The understanding of patients with cancer of their condition and their wishes regarding care as they approach end of life (EoL) have been studied more in high-income countries than in low- and middle-income countries (LMICs). Patients and Methods: Data were analyzed from a cohort study (N = 221) of patients with advanced cancer who were recruited from a palliative care center in Soweto, South Africa (LMIC), between May 2016 and June 2017. Patients were asked about their understanding of their illness, estimated life expectancy, EoL care communication, and EoL care preferences. Results: Only 13 patients (5.9%) acknowledged that they were terminally ill; nine patients (4.1%) estimated accurately that they had months, not years, left to live. A total of 216 patients (97.7%) reported that they had not had an EoL care discussion with their physician, and 170 patients (76.9%) did not want to know their prognosis even if the doctor knew it. Most patients preferred comfort care (72.9%; n = 161) to life-extending care (14.0%; n = 31), and did not want to be kept alive using extreme measures (80.5%; n = 178) or have their doctors do everything possible to extend their lives (78.3%; n = 173). Finally, 127 patients (57.5%) preferred to die at home, and 51 (23.1%) preferred to die in the hospital. Most patients (81.0%; n = 179) had funeral plans. Conclusion: South African patients demonstrated less awareness of the fact that they were terminally ill, were less likely to have discussed their prognosis with their doctor, and more strongly preferred comfort care to life-extending EoL care than US and other LMIC patients in prior research. These differences highlight the need for culturally appropriate, patient-centered EoL care for South African patients with advanced cancer as well as to determine individual preferences and needs in all EoL settings