Maintaining wellbeing for South Africans receiving ART: The burden of pain and symptoms is greater with longer ART exposure

Background. Physical and psychological symptom burden among people with HIV infection is associated with poor quality of life, poorer treatment adherence, viral rebound and risk behaviour. Symptomatology has not been investigated among outpatients in sub-Saharan Africa. Objective. To measure the seven-day period prevalence, burden and correlates of pain and other physical and psychological symptoms among HIV patients receiving antiretroviral therapy (ART).Methods. This was a cross-sectional self-report study. A total of 378 patients were interviewed using validated tools in three South African public sector clinics.Results. The most prevalent symptoms were feeling sad (64%), feeling irritable (61.6%), worry (60.8%), numbness and tingling in hands/ feet (59.8%), and sexual problems (51%). In multivariate analysis, later disease stage was associated with worse psychological symptom burden (β=0.359; 95% confidence interval (CI) 0.202 - 0.516; p≤0.001), global symptom burden (β=0.365; 95% CI 0.204 - 0.526; p<0.001) and number of symptoms (β=0.308; 95% CI 0.150 - 0.465; p<0.001). Those receiving treatment for a greater number of years also reported higher burden for physical (β=0.083; 95% CI 0.037 - 0.129; p≤0.001), psychological (β=0.068; 95% CI 0.019 - 0.117; p=0.007) and global symptoms (β=0.065; 95% CI 0.016 - 0.115; p=0.010), and a greater number of symptoms (β=0.081; 95% CI 0.032 - 0.130; p=0.001). Conclusions. The data reveal a high symptom burden despite treatment. Detailed symptom assessment and control continues to be required in the era of treatment.

Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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).</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p

Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study

Objectives To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field

Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study

<p>Abstract</p> <p>Background</p> <p>Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool.</p> <p>Methods</p> <p>A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (<it>Function, Symptom, Interpersonal, Well being, Transcendent</it>) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the <it>Total QOL </it>score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda.</p> <p>Results</p> <p>285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean <it>Total </it>score 17.32 (possible range 0 to 30). Patients scored most poorly on <it>Function </it>(mean 0.21), followed by <it>Well being </it>(2.59), <it>Symptoms </it>(5.38), <it>Transcendent </it>(5.50), <it>Interpersonal </it>(9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on <it>Well being </it>(<it>Z </it>= -2.778, p = 0.005), <it>Transcendence </it>(<it>Z </it>= -2.693, p = 0.007) and <it>Total QOL </it>(<it>Z </it>= -2.564, p = 0.01). Global QOL score was most weakly correlated with <it>Total QOL </it>(r = 0.37) and the <it>Transcendent </it>subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA.</p> <p>Conclusions</p> <p>Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the <it>Function </it>domain warrants further research.</p

Attitudes toward tobacco cessation and lung cancer screening in two South African communities

Among men in South Africa, the prevalence of tobacco smoking is as high as 33%. Although smoking is responsible for most lung cancer in South Africa, occupational and environmental exposures contribute greatly to risk. We conducted a tobacco and lung cancer screening needs assessment and administered surveys to adults who smoked >100 cigarettes in their lifetime in Johannesburg (urban) and Kimberley (rural). We compared tobacco use, risk exposure, attitudes toward and knowledge of, and receptivity to cessation and screening, by site. Of 324 smokers, nearly 85% of current smokers had a <30 pack-year history of smoking; 58.7% had tried to stop smoking ≥1 time, and 78.9% wanted to quit. Kimberley smokers more often reported being advised by a healthcare provider to stop smoking (56.5% vs. 37.3%, p=0.001) than smokers in Johannesburg but smokers in Johannesburg were more willing to stop smoking if advised by their doctor (72.9% vs. 41.7%, p<0.001). Findings indicate that tobacco smokers in two geographic areas of South Africa are motivated to stop smoking but receive no healthcare support to do so. Developing high risk criteria for lung cancer screening and creating tobacco cessation infrastructure may reduce tobacco use and decrease lung cancer mortality in South Africa

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  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

Spiritual Care Recommendations for People Receiving Palliative Care in sub-Saharan Africa

These recommendations aim to inform the provision of spiritual care for people receiving palliative care in sub-Saharan Africaby providing evidence-based guidance for palliative care service providers. The recommendations are designed to be broad and adaptable to different local conditions, so that they are applicable across sub-Saharan Africa, and to complement and facilitate the attainment of the APCA standard on spiritual care

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