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"Kizyma, Roman"
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Defining availability of 100 essential diagnostic items for children with cancer and gaps in implementing WHO recommendations: Global CEDx Working Group survey
2022
WHO has established recommendations to guide governments' prioritisation of essential diagnostic tests, technologies, and priority medical devices for patients with cancer. Despite many countries committing to expanding resources for children with cancer since the WHO Global Initiative for Childhood Cancer was launched in 2018, data on the availability of essential diagnostics and on local awareness and adoption of WHO recommendations in low-income and middle-income countries are scarce.
A purposive group of providers and policy makers was invited to review national interventions for access to diagnostics as part of their national cancer control plan or involvement in the WHO Global Initiative for Childhood Cancer. More than 800 diagnostic items (ie, diagnostic tests and diagnostic devices or equipment) from WHO recommendations for priority medical devices for cancer and essential in-vitro diagnostics list were iteratively summarised into 100 items relevant for children with cancer. A survey (in English, Spanish, French, and Russian) was developed to assess diagnostics availability and COVID-19 impact on access; out-of-pocket needs, or financial burden on families to pay for diagnostics; perception of the WHO recommendations with respect to completeness and relevance, use and usefulness for children with cancer; and factors affecting recommendation adoption and implementation.
380 participants from 16 low-income and middle-income countries in six WHO regions (Costa Rica, Dominican Republic, El Salvador, Ghana, Guatemala, Haiti, Honduras, Morocco, Myanmar, Nicaragua, Panama, Peru, Philippines, Sri Lanka, Ukraine, and Zambia), were invited. The median response rate across the 16 countries was 80%. 231 (80%) of 289 eligible respondents were multidisciplinary clinicians (including 101 paediatric haematologist–oncologists), and 58 (20%) self-identified primarily as administrators, non-governmental organisation representatives, and policy makers. Although some diagnostic items were not available in all settings, disparities were evident. Diagnostic items were significantly more available in the private than in the public setting across all three categories of laboratory and pathology (+25%), surgery and anaesthesia (+19%), and imaging (+43%; p<0·0015 for all categories). Most respondents indicated that at least one in four patients were affected by varying availability of diagnostic items, and that families paid out-of-pocket for essential diagnostic items. Top-ranked priorities by respondents included addressing access to advanced and basic diagnostics, delays in tests, and families' need to pay out-of-pocket. 119 (85%) of 140 eligible respondents considered that the 100 distilled core items reflected a complete list for laboratory and pathology, surgery and anaesthesia, and imaging. Although 69 (87%) of 79 respondents and 155 (90%) of 172 respondents found WHO recommendations useful and relevant, 228 (83%) of 276 had little previous familiarity with the recommendations, and only 82 (29%) of 278 had previously used them, mainly as personal references. Top factors affecting adoption and implementation of WHO recommendations included awareness and ease of extracting and applying recommendations to childhood cancer and to local contexts.
This study established the availability of a core set of 100 essential diagnostic items recommended by WHO in low-income and middle-income countries in different phases of expanding access to care for children with cancer. A scarcity of essential laboratory and pathology, surgery and anaesthesia, and imaging diagnostics in all settings were identified, as well as a disproportionate lack of access for patients in the public setting, further disrupted by the COVID-19 pandemic. This study explored local awareness and factors affecting adoption and implementation of WHO recommendations and priorities for policy action. Our findings point to the utility of an essential diagnostics list for children analogous to WHO's essential medicines list.
American Lebanese Syrian Associated Charities and St Jude Children's Research Hospital.
Journal Article
Exploring treatment decision-making at diagnosis for children with advanced cancer in low- and middle-income countries
2024
Purpose
Global childhood cancer survival outcomes correlate with regional contextual factors, yet upfront treatment decision-making for children with advanced or poor prognosis cancer in low- and middle-income countries (LMICs) is not well understood. This study aimed to (1) characterize the landscape of contextual factors that shape physician decision-making at diagnosis for these children in LMICs and (2) describe physician rationales for if/when to offer treatment with non-curative intent, including how they define “poor prognosis” during treatment decision-making.
Methods
An international panel of pediatric oncologists practicing in LMICs participated in two focus groups structured for the collaborative generation of factors influencing treatment decision-making, including consideration of non-curative treatment pathways at diagnosis. Thematic analysis of qualitative data was conducted, followed by member checking.
Results
Eleven pediatric oncologists participated, representing all global regions defined by the World Health Organization. Participants identified a broad range of factors influencing decision-making across multiple levels, including the individual, hospital, health system, community, and country levels. All participants agreed that treatment with non-curative intent could be offered at diagnosis in certain contexts, and diverse definitions for poor prognosis were described.
Conclusions
Upfront treatment decision-making for children with advanced or poor prognosis cancer in LMICs is variable and challenging. Difficulties with decision-making in LMICs may be amplified by inconsistent definitions of poor prognosis and underrepresentation of the factors that influence treatment decision-making within existing decision-making frameworks or childhood cancer treatment guidelines. Future research should explore decision-making approaches, preferences, and challenges in depth from the perspectives of pediatric cancer patients, families, and multidisciplinary clinicians.
Journal Article