Breast Cancer-Related Financial Toxicity in Sri Lanka: Insights From a Lower Middle-Income Country With Free Universal Public Healthcare.

Financial toxicity (FT) describes either objective or perceived excess financial strain due to a cancer diagnosis on the well-being of patients, families, and society. The consequences of FT have been shown to span countries of varied economic tiers and diverse healthcare models. This study attempts to describe FT and its effects in a lower- to middle-income country delivering predominantly public nonfee-levying healthcare. This was a cross-sectional study involving 210 patients with breast cancer of any stage (I to IV), interviewed between 6 and 18 months from the date of diagnosis. Financial toxicity was highly prevalent with 81% reporting 3 or more on a scale of 1 to 5. Costs incurred for travelling (94%), out-of-hospital investigations (87%), and consultation fees outside the public system (81%) were the most common contributors to FT. Daily compromises for food and education were made by 30% and 20%, respectively, with loss of work seen in over one-third. Greater FT was seen with advanced cancer stage and increasing distance to the nearest radiotherapy unit (P = .008 and .01, respectively). Family and relatives were the most common form of financial support (77.6%). In conclusion, FT is substantial in our group, with many having to make daily compromises for basic needs. Many opt to visit the fee-levying private sector for at least some part of their care, despite the availability of an established public nonfee-levying healthcare.

CritCom: assessment of quality of interdisciplinary communication around deterioration in pediatric oncologic patients.

Background: High-quality clinical care requires excellent interdisciplinary communication, especially during emergencies, and no tools exist to evaluate communication in critical care. We describe the development of a pragmatic tool focusing on interdisciplinary communication during patient deterioration (CritCom). Methods: The preliminary CritCom tool was developed after a literature review and consultation with a multidisciplinary panel of global experts in communication, pediatric oncology, and critical care to review the domains and establish content validity iteratively. Face and linguistic validity were established through cognitive interviews, translation, and linguistic synthesis. We conducted a pilot study among an international group of clinicians to establish reliability and usability. Results: After reviewing 105 potential survey items, we identified 52 items across seven domains. These were refined through cognitive interviews with 36 clinicians from 15 countries. CritCom was piloted with 433 clinicians (58% nurses, 36% physicians, and 6% other) from 42 hospitals in 22 countries. Psychometric testing guided the refinement of the items for the final tool. CritCom comprised six domains with five items each (30 total). The final tool has excellent reliability (Cronbach's alpha 0.81-0.86), usability (93% agree or strongly agree that the tool is easy to use), and similar performance between English and Spanish tools. Confirmatory factor analysis was used to establish the final 6-domain structure. Conclusions: CritCom is a reliable and pragmatic bilingual tool to assess the quality of interdisciplinary communication around patient deterioration for children in diverse resource levels globally. Critcom results can be used to design and evaluate interventions to improve team communication.

Factors influencing treatment decision-making for cancer patients in low- and middle-income countries: A scoping review.

PURPOSE: In this scoping review, we evaluated existing literature related to factors influencing treatment decision-making for patients diagnosed with cancer in low- and middle-income countries, noting factors that influence decisions to pursue treatment with curative versus non-curative intent. We identified an existing framework for adult cancer developed in a high-income country (HIC) context and described similar and novel factors relevant to low-and middle-income country settings. METHODS: We used scoping review methodology to identify and synthesize existing literature on factors influencing decision-making for pediatric and adult cancer in these settings. Articles were identified through an advanced Boolean search across six databases, inclusive of all article types from inception through July 2022. RESULTS: Seventy-nine articles were identified from 22 countries across six regions, primarily reporting the experiences of lower-middle and upper-middle-income countries. Included articles largely represented original research (54%), adult cancer populations (61%), and studied patients as the targeted population (51%). More than a quarter of articles focused exclusively on breast cancer (28%). Approximately 30% described factors that influenced decisions to choose between therapies with curative versus non-curative intent. Of 56 reported factors, 22 novel factors were identified. Socioeconomic status, reimbursement policies/cost of treatment, and treatment and supportive care were the most commonly described factors. CONCLUSIONS: This scoping review expanded upon previously described factors that influence cancer treatment decision-making in HICs, broadening knowledge to include perspectives of low- and middle-income countries. While global commonalities exist, certain variables influence treatment choices differently or uniquely in different settings. Treatment regimens should further be tailored to local environments with consideration of contextual factors and accessible resources that often impact decision-making.

Availability of cytotoxic medicines in the WHO essential medicine list used in treating childhood malignancies in low-income and lower-middle-income countries: a systematic review protocol.

INTRODUCTION: Cancer is a leading cause of death globally with childhood cancers accounting for around 5% of the total incidence. Almost 90% of childhood cancers are recorded from low-income and lower-middle-income countries (LLMICs), where survival rates are comparatively low. The unavailability of essential medicines for childhood cancers is identified as a reason for this observed health inequity. The objectives of this review are to describe the availability of cytotoxic medicines in the WHO essential medicine list (EML) used in treating children with cancer in LLMICs and to determine the enablers and barriers to accessing WHO essential medicines for childhood cancer. METHODS AND ANALYSIS: A systematic review will be conducted using electronic databases: MEDLINE, EMBASE and CINAHL. Additional articles and grey literature will be searched in Google Scholar and reference list of the selected articles. It will include primary studies, national/regional reports and policy documents. Review questions will be framed into different components according to the ECLIPSe framework. Children less than 19 years of age diagnosed with any malignant disorder in LLMICs will be the client group. Studies that have focused on the availability of EML for adult malignancies and care providers' knowledge of EML for childhood malignancies will not be considered. Only the studies reported in the English language will be included. Mixed methods Appraisal Tool will be used to assess the quality of included studies. Data will be presented as a narrative synthesis. ETHICS AND DISSEMINATION: This research is exempt from ethics approval because the work is carried out on published documents. Findings of this review will be disseminated through a peer-reviewed journal for the authorities in LLMICs to understand the magnitude of the problem and to identify enablers and barriers to take evidence based decisions to improve their health system. PROSPERO REGISTRATION NUMBER: CRD42022334156.

A new measure for multi-professional medical team communication: design and methodology for multilingual measurement development.

Background: As implementation science in global health continues to evolve, there is a need for valid and reliable measures that consider diverse linguistic and cultural contexts. A standardized, reproducible process for multilingual measure development may improve accessibility and validity by participants in global health settings. To address this need, we propose a rigorous methodology for multilingual measurement development. We use the example of a novel measure of multi-professional team communication quality, a determinant of implementation efforts. Methods: The development and translation of this novel bilingual measure is comprised of seven steps. In this paper, we describe a measure developed in English and Spanish, however, this approach is not language specific. Participants are engaged throughout the process: first, an interprofessional panel of experts and second, through cognitive interviewing for measure refinement. The steps of measure development included: (1) literature review to identify previous measures of team communication; (2) development of an initial measure by the expert panel; (3) cognitive interviewing in a phased approach with the first language (English); (4): formal, forward-backward translation process with attention to colloquialisms and regional differences in languages; (5) cognitive interviewing repeated in the second language (Spanish); (6) language synthesis to refine both instruments and unify feedback; and (7) final review of the refined measure by the expert panel. Results: A draft measure to assess quality of multi-professional team communication was developed in Spanish and English, consisting of 52 questions in 7 domains. This measure is now ready for psychometric testing. Conclusions: This seven-step, rigorous process of multilingual measure development can be used in a variety of linguistic and resource settings. This method ensures development of valid and reliable tools to collect data from a wide range of participants, including those who have historically been excluded due to language barriers. Use of this method will increase both rigor and accessibility of measurement in implementation science and advance equity in research and practice.

Patient Satisfaction With Breast Cancer Care Delivery at the National Cancer Institute of Sri Lanka: Does Language Play a Role?

PURPOSE: This study sought to examine whether there was an association between language barriers and patient satisfaction with breast cancer care in Sri Lanka. METHODS: A telephone-based survey was conducted in the three official languages (Sinhala, Tamil, or English) among adult women (older than 18 years) who had been treated for breast cancer within 6-12 months of diagnosis at the National Cancer Institute of Sri Lanka. The European Organisation for Research and Treatment of Cancer Satisfaction with Cancer Care core questionnaire was adapted to assess three main domains (physicians, allied health care professionals, and the organization). All scores were linearly transformed to a 0-100 scale, and subscores for domains were summarized using means and standard deviations. These were also calculated for the Sinhalese and Tamil groups and compared. RESULTS: The study included 72 participants (32 ethnically Tamil and 40 Sinhalese, with 100% concordance with preferred language). The most commonly reported best aspect of care (n = 25) involved affective behaviors of the physicians and nurses. Ease of access to the hospital performed poorest overall, with a mean satisfaction score of 54 (30.5). Clinic-related concerns were highlighted as the worst aspect of the care (n = 10), including long waiting times during clinic visits. Sixty-three percent of Tamil patients reported receiving none of their care in Tamil and 18% reported experiencing language barriers during their care. Tamil patients were less satisfied overall and reported lower satisfaction with care coordination (P = .005) and higher financial burden (P = 0.014). CONCLUSION: Ethnically Tamil patients were significantly less satisfied than their Sinhalese counterparts and experienced more language barriers, suggesting there is a need to improve access to language-concordant care in Sri Lanka.

Development and pilot testing of PROACTIVE: A pediatric onco-critical care capacity and quality assessment tool for resource-limited settings.

BACKGROUND: Nearly 90% children with cancer reside in low- and middle-income countries, which face multiple challenges delivering high-quality pediatric onco-critical care (POCC). We recently identified POCC quality and capacity indicators for PROACTIVE (PediatRic Oncology cApaCity assessment Tool for IntensiVe carE), a tool that evaluates strengths and limitations in POCC services. This study describes pilot testing of PROACTIVE, development of center-specific reports, and identification of common POCC challenges. METHODS: The original 119 consensus-derived PROACTIVE indicators were converted into 182 questions divided between 2 electronic surveys for intensivists and oncologists managing critically ill pediatric cancer patients. Alpha-testing was conducted to confirm face-validity with four pediatric intensivists. Eleven centers representing diverse geographic regions, income levels, and POCC services conducted beta-testing to evaluate usability, feasibility, and applicability of PROACTIVE. Centers' responses were scored and indicators with mean scores ≤75% in availability/performance were classified as common POCC challenges. RESULTS: Alpha-testing ensured face-validity and beta-testing demonstrated feasibility and usability of PROACTIVE (October 2020-June 2021). Twenty-two surveys (response rate 99.4%) were used to develop center-specific reports. Adjustments to PROACTIVE were made based on focus group feedback and surveys, resulting in 200 questions. Aggregated data across centers identified common POCC challenges: (1) lack of pediatric intensivists, (2) absence of abstinence and withdrawal symptoms monitoring, (3) shortage of supportive care resources, and (4) limited POCC training for physicians and nurses. CONCLUSIONS: PROACTIVE is a feasible and contextually appropriate tool to help clinicians and organizations identify challenges in POCC services across a wide range of resource-levels. Widespread use of PROACTIVE can help prioritize and develop tailored interventions to strengthen POCC services and outcomes globally.

Priorities for cancer research in low- and middle-income countries: a global perspective.

Cancer research currently is heavily skewed toward high-income countries (HICs), with little research conducted in, and relevant to, the problems of low- and middle-income countries (LMICs). This regional discordance in cancer knowledge generation and application needs to be rebalanced. Several gaps in the research enterprise of LMICs need to be addressed to promote regionally relevant research, and radical rethinking is needed to address the burning issues in cancer care in these regions. We identified five top priorities in cancer research in LMICs based on current and projected needs: reducing the burden of patients with advanced disease; improving access and affordability, and outcomes of cancer treatment; value-based care and health economics; quality improvement and implementation research; and leveraging technology to improve cancer control. LMICs have an excellent opportunity to address important questions in cancer research that could impact cancer control globally. Success will require collaboration and commitment from governments, policy makers, funding agencies, health care organizations and leaders, researchers and the public.

Clinical Oncology Workload in Sri Lanka: Infrastructure, Supports, and Delivery of Clinical Care.

PURPOSE: Sri Lanka is a lower middle-income country undergoing a demographic transition with an increasing aging population. This has given rise to a higher burden of noncommunicable diseases including cancer. A well-trained oncology workforce is essential to address this growing public health challenge. Understanding the baseline status of the clinical oncology workforce is an essential step to improving cancer care delivery in Sri Lanka. METHODS: In this cross-sectional study, we distributed a web-based survey to all clinical oncologists in Sri Lanka. The survey captured data regarding clinical workload, demographic details, practice setting, and perceived barriers to quality patient care. RESULTS: A total of 41 of 54 oncologists responded to the survey, and all participants had training in clinical oncology. Thirty-seven (90%) of 41 oncologists treated both solid and hematologic malignancies, and the median duration of independent practice was 5 years. Almost two thirds of the oncologists (26 of 41, 63%) work at an academic center, and two thirds of the oncologists (27 of 41, 66%) work in both public and private sectors. A majority of the oncologists (26 of 41, 63%) were on-call 7 days per week. More than half of the oncologists saw over 400 new patient consults per year. With regard to barriers to quality patient care, most of the concerns relate to the scarcity of resources. CONCLUSION: This study sheds significant light about the clinical oncology workload landscape in Sri Lanka. Compared with other low- and middle-income countries, Sri Lankan clinical oncologists are faced with a very high workload, which may affect delivery or care.

Healthcare delivery for non-communicable diseases among breast cancer survivors in Sri Lanka: Is there a missed opportunity?

PURPOSE: Breast cancer is the most common cancer globally as well as in Sri Lanka. Improvements in cancer care have allowed patients to live to an older age. With advancing age, incidence of non-communicable diseases (NCDs) increases. Cancer diagnoses tend to take attention away from the treatment of other comorbidities, given its importance. The objective of this study was to describe healthcare delivery for NCDs among female breast cancer survivors treated at the National Cancer Institute of Sri Lanka (NCISL) and identify opportunities to optimise non-cancer medical care in this cohort. METHODS: A total of 420 women were identified from the breast cancer database at the NCISL, who were 50-80 years at the time of their breast cancer diagnosis, were within 12-24 months from the date of diagnosis, had completed their active cancer treatment and were in complete remission. Of this population, 228 (54%) women who had documented NCDs at the time of diagnosis were identified and were followed-up via telephone to collect details regarding existing comorbidities and the screening and development of new comorbidities. RESULTS: At the time of cancer diagnosis, 216/228 (95%) of patients had hypertension, 104/228 (46%) had type 2 diabetes and 17/228 (8%) had ischaemic heart disease (IHD). The prevalence of other comorbidities was very low. During the post diagnosis period, 11 patients developed type 2 diabetes, while 2 developed IHD. Osteoporosis screening using dual-energy X-ray absorptiometry scanning was very low at diagnosis 21/228 (9%) but improved in post cancer treatment follow-up 112/228 (49%, p < 0.001). Only 95/228 (42%) were screened for other cancers. CONCLUSIONS: Hypertension was the most prevalent comorbidity while type 2 diabetes and dyslipidaemia were the most common diagnoses post-treatment. In these patients, screening for osteoporosis and other cancers remains very low, emphasising a missed opportunity.

Demographic, tumour, and treatment characteristics of female patients with breast cancer in Sri Lanka; results from a hospital-based cancer registry.

BACKGROUND: Although breast cancer is the most common cancer among Sri Lankan women, there is little published data on patient characteristics and treatment in the local context. We aimed to describe disease characteristics and management in a large contemporary cohort of women with breast cancer at the National Cancer Institute of Sri Lanka (NCISL). METHODS: All women with invasive primary breast cancers diagnosed during 2016-2020 were identified from the NCISL breast cancer registry. The NCISL sees approximately 40% of all cancer patients in Sri Lanka. Cancer stage at diagnosis was defined according to the Tumour, Node, and Metastasis (TNM) staging system and the Estrogen (ER) and progesterone (PR) receptor status was determined based on the results of immunohistochemistry tests. Descriptive statistics were used to describe the study cohort and treatment patterns. RESULTS: Over 5100 patients were diagnosed with breast cancer during the study period at the NCISL. The mean age of the women was 56 (SD 12) years. Common co-morbidities were hypertension (n = 1566, 30%) and diabetes mellitus (n = 1196, 23%). Two thirds (66%) of the cancers were early stage (stage I & II) at diagnosis. ER/PR positivity rate was 72% and HER-2 positivity rate was 22%. Two thirds of the women had undergone mastectomy while 68% had undergone axillary clearance. The rate of chemotherapy delivery was 91% for women with node positive disease while 77% of eligible women (i.e., after wide local excision or with > 3 positive lymph nodes) had received adjuvant radiotherapy. Endocrine therapy was initiated in 88% of eligible women with hormone receptor positive disease while rate of trastuzumab use was 59% among women with HER2 positive breast cancer. CONCLUSIONS: High percentage of advanced breast cancer at diagnosis and high prevalence of comorbidities are some of the major challenges faced in the management of breast cancer in Sri Lanka. Given that stage at diagnosis is the most important prognostic factor determining survival, greater efforts are needed to promote early diagnosis of breast cancer. Considerable lapses in the concordance between guideline recommendations and the delivery of cancer care warrants closer assessment and intervention.