"Alas my sickness becomes my family's burden": A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia.

INTRODUCTION: Limited research exists exploring the experience of living with advanced breast cancer in Indonesia. We sought to explore the narratives of women with breast cancer across the illness trajectory to understand their experiences from diagnosis to accessing and undergoing cancer treatments to inform the development of cancer care. METHODS: A nested, exploratory study adopting a qualitative approach. We conducted in-depth face-to-face interviews with women living with advanced breast cancer in Yogyakarta, Indonesia. We purposively sampled participants by age, education and marital status. All interviews were transcribed verbatim with thematic analysis used to identify, analyse and report patterns and themes within the data. FINDINGS: Four main themes were derived: 1) Early experiences, prior to accessing health care; 2) Navigating the system to access treatment; 3) Enduring chemotherapy and advancing disease, with crucial family support; 4) Seeking normalcy and belief in treatment. From initial symptoms through to undergoing treatments, the experience of participants was punctuated by barriers and challenges. DISCUSSION: Presentation delays were driven by dismissing initial symptoms, seeking alternative medicines, and fear of surgery. Access to healthcare required participants to contend with long-distance travel to facilities, tiered and convoluted referral processes, and adverse effects and financial impact of treatments. Individual determination, belief in God, and the role of families were critical throughout the disease trajectory. Adopting a focus across the disease trajectory facilitated the identification of enduring and persistent challenges to care delivery that can inform targeted development and optimisation of care delivery for women with breast cancer.

Delays in the presentation and diagnosis of women with breast cancer in Yogyakarta, Indonesia: A retrospective observational study.

PURPOSE: To investigate factors associated with delays in presentation and diagnosis of women with confirmed breast cancer (BC). METHODS: A cross-sectional study nested in an ongoing prospective cohort study of breast cancer patients at Dr Sardjito Hospital, Yogyakarta, Indonesia, was employed. Participants (n = 150) from the main study were recruited, with secondary information on demographic, clinical, and tumor variables collected from the study database. A questionnaire was used to gather data on other socioeconomic variables, herbal consumption, number of healthcare visits, knowledge-attitude-practice of BC, and open-ended questions relating to initial presentation. Presentation delay (time between initial symptom and first consultation) was defined as ≥3 months. Diagnosis delay was defined as ≥1 month between presentation and diagnosis confirmation. Impact on disease stage and determinants of both delays were examined. A Kruskal-Wallis test was used to assess the length and distribution of delays by disease stage. A multivariable logistic regression analysis was conducted to explore the association between delays, cancer stage and factors. RESULTS: Sixty-five (43.3%) patients had a ≥3-month presentation delay and 97 (64.7%) had a diagnosis confirmation by ≥1 month. Both presentation and diagnosis delays increased the risk of being diagnosed with cancer stage III-IV (odds ratio/OR 2.21, 95% CI 0.97-5.01, p = 0.059 and OR 3.03, 95% CI 1.28-7.19, p = 0.012). Visit to providers ≤3 times was significantly attributed to a reduced diagnosis delay (OR 0.15, 95% CI 0.06-0.37, p <0.001), while having a family history of cancer was significantly associated with increased diagnosis delay (OR 2.28, 95% CI 1.03-5.04, p = 0.042). The most frequent reasons for delaying presentation were lack of awareness of the cause of symptoms (41.5%), low perceived severity (27.7%) and fear of surgery intervention (26.2%). CONCLUSIONS: Almost half of BC patients in our setting had a delay in presentation and 64.7% experienced a delay in diagnosis. These delays increased the likelihood of presentation with a more advanced stage of disease. Future research is required in Indonesia to explore the feasibility of evidence-based approaches to reducing delays at both levels, including educational interventions to increase awareness of BC symptoms and reducing existing complex and convoluted referral pathways for patients suspected of having cancer.

Building on sand: digital technologies for care coordination and advance care planning.

Approaches using digital technologies to support advance care planning (ACP) and care coordination are being used in palliative and end of life care. While providing opportunities to facilitate increases in the completeness, sharing and availability of care plans, the evidence base underpinning their use remains limited. We outline an approach that continues to be developed in England; Electronic Palliative Care Coordination Systems (EPaCCS). Stages governing their optimal use are outlined alongside unanswered questions with relevance across technology-mediated approaches to ACP. Research has a critical role in determining if technology-mediated approaches to ACP, such as EPaCCS, could be useful tools to support the delivery of care for patients with chronic and progressive illnesses.

Acceptability and Potential Effectiveness of eHealth Tools for Training Primary Health Workers From Nigeria at Scale: Mixed Methods, Uncontrolled Before-and-After Study.

BACKGROUND: The in-service training of frontline health workers (FHWs) in primary health care facilities plays an important role in improving the standard of health care delivery. However, it is often expensive and requires FHWs to leave their posts in rural areas to attend courses in urban centers. This study reports the implementation of a digital health tool for providing video training (VTR) on maternal, newborn, and child health (MNCH) care to provide in-service training at scale without interrupting health services. The VTR intervention was supported by satellite communications technology and existing 3G mobile networks. OBJECTIVE: This study aims to determine the feasibility and acceptability of these digital health tools and their potential effectiveness in improving clinical knowledge, attitudes, and practices related to MNCH care. METHODS: A mixed methods design, including an uncontrolled pre- and postquantitative evaluation, was adopted. From October 2017 to May 2018, a VTR mobile intervention was delivered to FHWs in 3 states of Nigeria. We examined changes in workers' knowledge and confidence in delivering MNCH services through a pre- and posttest survey. Stakeholders' experiences with the intervention were explored through semistructured interviews that drew on the technology acceptance model to frame contextual factors that shaped the intervention's acceptability and usability in the work environment. RESULTS: In total, 328 FHWs completed both pre- and posttests. FHWs achieved a mean pretest score of 51% (95% CI 48%-54%) and mean posttest score of 69% (95% CI 66%-72%), reflecting, after adjusting for key covariates, a mean increase between the pre- and posttest of 17 percentage points (95% CI 15-19; P<.001). Variation was identified in pre- and posttest scores by the sex and location of participants alongside topic-specific areas where scores were lowest. Stakeholder interviews suggested a wide acceptance of VTR Mobile (delivered via digital technology) as an important tool for enhancing the quality of training, reinforcing knowledge, and improving health outcomes. CONCLUSIONS: This study found that VTR supported through a digital technology approach is a feasible and acceptable approach for supporting improvements in clinical knowledge, attitudes, and reported practices in MNCH. The determinants of technology acceptance included ease of use, perceived usefulness, access to technology and training contents, and the cost-effectiveness of VTR, whereas barriers to the adoption of VTR were poor electricity supply, poor internet connection, and FHWs' workload. The evaluation also identified the mechanisms of the impact of delivering VTR Mobile at scale on the micro (individual), meso (organizational), and macro (policy) levels of the health system. Future research is required to explore the translation of this digital health approach for the VTR of FHWs and its impact across low-resource settings to ameliorate the financial and time costs of training and support high-quality MNCH care delivery. TRIAL REGISTRATION: ISRCTN Registry 32105372; https://www.isrctn.com/ISRCTN32105372.

Survival outcome and prognostic factors of patients with nasopharyngeal cancer in Yogyakarta, Indonesia: A hospital-based retrospective study.

PURPOSE: This study aimed to determine the survival outcome and prognostic factors of patients with nasopharyngeal cancer accessing treatment in Yogyakarta, Indonesia. METHODS: Data on 759 patients with NPC diagnosed from 2007 to 2016 at Dr Sardjito General Hospital were included. Potential prognostic variables included sociodemographic, clinicopathology and treatment parameters. Multivariable analyses were implemented using semi-parametric Cox proportional hazards modelling and fully parametric survival analysis. RESULTS: The median time of observation was 14.39 months. In the whole cohort the median observed survival was 31.08 months. In the univariable analysis, age, education status, insurance type, BMI, ECOG index, stage and treatment strategy had an impact on overall survival (OS) (p values <0.01). Semi-parametric multivariable analyses with stage stratification showed that education status, ECOG index, and treatment modality were independent prognostic factors for OS (p values <0.05). In the fully parametric models age, education status, ECOG index, stage, and treatment modality were independent prognostic factors for OS (p values <0.05). For both multivariable analyses, all treatment strategies were associated with a reduced hazard (semi-parametric models, p values <0.05) and a better OS (parametric models, p values <0.05) compared with no treatment. Furthermore, compared with radiation alone or chemotherapy alone, a combination of chemotherapy and radiation either in a form of concurrent chemoradiotherapy (CCRT), sequential chemotherapy and radiation, or induction chemotherapy followed by CCRT demonstrated a reduced hazard (hazard ratio/HR 0.226, 95% confidence interval/CI 0.089-0.363, and HR 0.390, 95%CI 0.260-0.519) and a better OS (time ratio/TR 3.108, 95%CI 1.274-4.942 and TR 2.531, 95%CI 1.829-3.233) (p values < 0.01). CONCLUSIONS: Median OS for the cohort was low compared to those reported in both endemic and non-endemic regions. By combining the findings of multivariable analyses, we showed that age, education status, ECOG index, stage and first treatment modality were independent predictors for the OS.

Impact of using eHealth tools to extend health services to rural areas of Nigeria: protocol for a mixed-method, non-randomised cluster trial.

INTRODUCTION: eHealth solutions that use internet and related technologies to deliver and enhance health services and information are emerging as novel approaches to support healthcare delivery in sub-Saharan Africa. Using digital technology in this way can support cost-effectiveness of care delivery and extend the reach of services to remote locations. Despite the burgeoning literature on eHealth approaches, little is known about the effectiveness of eHealth tools for improving the quality and efficiency of health systems functions or client outcomes in resource-limited countries. eHealth tools including satellite communications are currently being implemented at scale, to extend health services to rural areas of Nigeria, in Ondo and Kano States and the Federal Capital Territory. This paper shares the protocol for a 2-year project ('EXTEND') that aims to evaluate the impact of eHealth tools on health system functions and health outcomes. METHODOLOGY AND ANALYSIS: This multisite, mixed-method evaluation includes a non-randomised, cluster trial design. The study comprises three phases-baseline, midline and endline evaluations-that involve: (1) process evaluation of video training and digitisation of health data interventions; (2) evaluation of contextual influences on the implementation of interventions; and (3) impact evaluation of results of the project. A convergent mixed-method model will be adopted to allow integration of quantitative and qualitative findings to achieve study objectives. Multiple quantitative and qualitative datasets will be repeatedly analysed and triangulated to facilitate better understanding of impact of eHealth tools on health worker knowledge, quality and efficiency of health systems and client outcomes. ETHICS AND DISSEMINATION: Ethics approvals were obtained from the University of Leeds and three States' Ministries of Health in Nigeria. All data collected for this study will be anonymised and reports will not contain information that could identify respondents. Study findings will be presented to Ministries of Health at scientific conferences and published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ISRCTN32105372; Pre-results.