Developing research priorities for palliative care in Colombia: a priority setting partnership approach.

BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.

Co-Designing a Strategy for Implementing the SPARC Holistic Needs Assessment Tool in the Colombian Clinical Context.

In Colombia, timely access to palliative care (PC) is hampered by difficulties in identifying and referring to necessary services. The SPARC (Sheffield Profile for Assessment and Referral for Care) instrument provides a holistic needs assessment to improve referrals for different forms of care. SPARC was recently validated in Colombian Spanish (SPARC-Sp) but has not yet been implemented in clinical practice. We undertook workshops that aimed to co-design an implementation strategy to inform a future trial testing SPARC-Sp in the Colombian healthcare system. Workshop attendees included patients, informal caregivers, healthcare professionals, volunteers, administrative staff and decision makers. Discussions within the workshops refined implementation and dissemination strategies for SPARC-Sp in practical scenarios. Results include the need for education, clarification and demystification of PC and the lack of time and skills of professionals to identify patients' needs. Attendees recognized SPARC-Sp as a valuable tool for highlighting patients' concerns, whose adaptations are needed in Colombia to address the low literacy of the population and specificities of the healthcare system. We proposed local adaptations to SPARC-Sp and produced five educational videos aimed at health professionals, patients and caregivers to strengthen understanding of holistic needs in PC while building a strategy for SPARC-Sp implementation in the Colombian context.

Barriers and facilitators to palliative care for patients with non-curable cancer in Colombia: perspectives of allied health and social care professionals.

BACKGROUND: Palliative care aims to improve the quality of life of people with life-limiting illness and their families by addressing physical, psychological, social and spiritual suffering. Allied Health and Social Care Professionals (AHSCP) are key to delivering comprehensive, high quality palliative care. In recent years, Colombia has developed changes in the legal, and regulatory framework for access to palliative care but barriers and facilitators to palliative care for patients with non-curable cancer have not been explored from the perspective of AHSCP. METHOD: This study aims to address this knowledge gap in two cities in Colombia: one in a medium-sized city in a rural area (Popayan) and one in a highly urbanized area (Bogota). Two focus groups with AHSCP were conducted using the World Cafe method, and a subsequent thematic analysis was performed to establish the main barriers and facilitators. RESULTS: A wide range of 18 AHSCPs attended the two World Cafe groups in Popayan and Bogota. As a result of this iterative process, we established five thematic areas: (i) Humanizing care, (ii) Normalizing palliative care: referral at the time of diagnosis, (iii) Misunderstandings related to palliative care, (iv) Barriers within the health system, and (v) Geographic barriers. CONCLUSION: This study provided the perspectives of AHSCPs in Colombia in relation to barriers and facilitators in the framework of comprehensive palliative care attention. Participants identified misconceptions about palliative care, which are explained by the lack of inclusion of this area in the educational programs of health professionals and AHSCPs, along with the limited supply and access to palliative care, especially in rural areas.

Cancer as a Chronic Illness in Colombia: A Normative Consensus Approach to Improving Healthcare Services for those Living with and beyond Cancer and Its Treatment.

Cancer survivorship care in Colombia is of increasing importance. International survivorship initiatives and studies show that continuing symptoms, psychological distress, and late effects impact the quality of life for survivors. Priorities for quality survivorship according to Colombian patients and clinicians are unknown. We undertook a nominal consensus approach with 24 participants using virtual meeting technology to identify the priorities for cancer survivorship. We applied an iterative approach conducted over eight weeks with five workshops and one patient focus group followed by a priority setting survey. The consensus group established six main themes, which were subsequently evaluated by experts: (i) symptoms and secondary effects of cancer; (ii) care coordination to increase patient access and integration of cancer care; (iii) psychosocial support after cancer treatment; (iv) mapping information resources and available support services for long-term cancer care; (v) identifying socioeconomic and regional inequalities in cancer survival to improve care and outcomes; and (vi) health promotion and encouraging lifestyle change. The order of priorities differed between clinicians and patients: patients mentioned psychosocial support as the number one priority, and clinicians prioritized symptoms and surveillance for cancer recurrence. Developing survivorship care needs consideration of both views, including barriers such as access to services and socioeconomic disparities.