Evaluating the Integration of Palliative Care in Uganda’s Referral Hospitals: A Case Study of Fort Portal Regional Referral Hospital

Evaluating the Integration of Palliative Care in Uganda’s Referral Hospitals: A Case Study of Fort Portal Regional Referral Hospital | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Evaluating the Integration of Palliative Care in Uganda’s Referral Hospitals: A Case Study of Fort Portal Regional Referral Hospital Ian Batanda, Dorothy Birungi This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8373194/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 13 You are reading this latest preprint version Abstract Background The integration of palliative care into public health services is a global priority, but it remains uneven in low-income settings. This study evaluated palliative care unit attendance, utilisation relative to need, and the model of care at Fort Portal Regional Referral Hospital (FPRRH) between 2019 and 2025. Methods A retrospective descriptive case study was conducted at FPRRH, a referral‑level hospital serving the Rwenzori subregion of Uganda. Facility records and palliative care unit documentation were reviewed to quantify patient attendance by diagnosis and age group, estimate the proportion of patients receiving specialist palliative care relative to those likely to need it, and describe the unit’s model of care. Data sources included HMIS 008 registers (2019–2024), the EAFYA electronic medical records system (2024/2025), and District Health Information System (DHIS2) reports. Attendance was analysed using descriptive statistics, and the model of care was derived through thematic analysis of reported activities. Results Between July 2019 and June 2025, 1,773 patients attended the palliative care unit. Of these, 959 (54.1%) had cancer and 814 (45.9%) had non‑cancer diagnoses. Overall, 89% of cancer patients accessed the unit compared with 5.1% of sickle cell disease patients and 1.4% of those with HIV‑related complications. Children comprised 6% of attendees. Attendance increased in 2024–2025, primarily driven by outpatient visits (73.6%). Across the hospital, 4,807 patients were identified as potentially requiring palliative care, of whom 1,108 (23%) accessed services. The hospital‑based model emphasised symptom control, collaborative care planning, psychosocial support, care continuity, and mentorship. Conclusion FPRRH has made measurable progress in integrating specialist palliative care, achieving higher coverage than commonly reported national and global estimates. Persistent gaps include low paediatric access, limited inpatient utilisation, and under‑representation of non‑cancer conditions. The hospital’s model offers a replicable framework for strengthening palliative care in referral hospitals. Palliative Care Uganda hospital‑based model service utilisation cancer sickle cell disease HIV Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Figure 6 Introduction Integrating palliative care into public healthcare systems is a critical strategy for strengthening health services and expanding access to specialist support for individuals with complex needs arising from chronic, life-limiting illnesses[ 1 – 3 ]. Specialist palliative care addresses the multifaceted physical and psychosocial challenges faced by patients and their families[ 4 ]. These challenges may include symptoms such as chronic pain, vomiting, breathlessness, and fungating wounds, as well as psychosocial distress—manifesting as anxiety, depression, unrealistic treatment expectations, denial, caregiver burnout, non-adherence to treatment, communication barriers, and emotional resistance[ 5 , 6 ]. Despite its importance, global access to palliative care remains limited due to low public awareness, competing health priorities, and weak integration within health systems[ 7 , 8 ]. In Europe, although progress has been made, integration into national health services remains low, with only 12 countries having formal policies that regulate palliative care provision[ 7 ]. Similarly, in Africa, many palliative care services operate independently of national health systems, and only 11 countries, including Uganda, have developed national policy frameworks or programs to guide integration[ 8 ]. Where palliative care is available, it is often delivered by non-governmental organisations through home-based, hospice, and outreach models [ 7 , 9 ], with limited presence in public hospitals. A key approach to achieving full integration involves establishing sustainable palliative care services within public hospitals, where most citizens receive care, and linking these services to community-based models to ensure continuity of care[ 3 , 10 , 11 ]. Uganda has made notable strides toward integration, including a 2021 Ministry of Health directive mandating the allocation of space for palliative care in referral hospitals. As a result, national and regional referral hospitals have begun establishing dedicated palliative care units.[ 12 , 13 ]. Fort Portal Regional Referral Hospital (FPRRH) is among these institutions, operating a unit dedicated to integrating palliative care within hospital services and providing comprehensive support to patients and families[ 14 ]. However, there remains a paucity of literature describing replicable hospital-based palliative care models for reference. Availability of literature detailing hospital palliative services would be essential to guide the development of new hospital units, inform human resource planning, and support resource mobilisation. While the Mulago-Makerere Palliative Care Unit, established in 2008, is a well-established example operating within Uganda’s public health system, its patient pathways are not widely documented[ 15 ]. Moreover, the impact of recent integration efforts on access to palliative care in Ugandan public hospitals has not been systematically evaluated, limiting evidence‑based planning. This study evaluates integration at Fort Portal Regional Referral Hospital as a case study to address that gap. Specifically, the study sought to assess overall attendance at the palliative care unit between 2019 and 2025, estimate service utilisation through the proportion of patients receiving palliative care relative to those in need, and describe the model of care employed. The findings aim to inform and support policymakers and health system managers in establishing and advancing sustainable, integrated palliative care within low-resource public hospitals. Methods Study design and setting: This retrospective descriptive case study evaluated the integration of palliative care at Fort Portal Regional Referral Hospital (FPRRH), a referral-level hospital serving the Rwenzori subregion. FPRRH’s mandate includes promotive, preventive, curative, palliative, and rehabilitative services[ 16 ]. The hospital serves eight districts (Kabarole, Kamwenge, Kasese, Ntoroko, Bundibugyo, Bunyangabu, Kyenjojo, Kyegegwa) and Fort Portal City, and recorded 47,504 outpatient visits and 10,697 inpatient admissions between July and December 2021 (bed occupancy 67%)[ 16 ]. Study population The study population comprised all patients who attended the palliative care unit at FPRRH from July 2019 to June 2025. Analyses focused on overall attendance and attendance by the selected diagnoses: Cancer, Human Immunodeficiency Virus (HIV) complications, and sickle cell disease (SCD), because they are highlighted in the Ministry of Health’s Health Unit Palliative Care monthly report (Health Management Information System (HMIS)105). Outcomes The primary outcomes were: (1) annual attendance at the palliative care unit and (2) the proportion of patients who received palliative care relative to those who potentially needed it, based on diagnosis. The secondary outcome was the palliative care model delivered at FPRRH. For this study, patients who potentially needed palliative care were defined as inpatients and outpatients with cancer, HIV complications, or SCD across the hospital. Some of the HIV complications that were considered to need palliative care included psychosis, tuberculosis, oral lesions, and depression. Inclusion and exclusion The study included all patient attendance records from palliative care registers and electronic medical records (July 2019–June 2025). All implemented unit activities reported during the study period were included in the description of the service model. Planned activities that had not been implemented were excluded from the analysis of the care model to ensure the model reflects actual services delivered. Data Collection Instrument and Procedure : A standardised tally sheet was used to collect annual attendance figures and unit activities. Data on patients who attended the Palliative Care Unit between July 2019 and October 2024 were obtained from archived Palliative Care Unit registers (Health Management Information System (HMIS) 008). Data for the period November 2024 to July 2025 were retrieved from the electronic medical records system, EAFYA. (EAFYA is a combination of the two words: Electronic, and AFYA – a Swahili word for Health)[ 17 ]. Data on inpatients for the year 2024/2025 were obtained from the EAFYA workload report for the individual palliative care unit staff. This gave a summary of total inpatient encounters. Data on those who potentially needed palliative care (totals for each diagnosis) for the years 2019/2020 to 2023/2024 were collected from the HMIS 105:01 report in the District Health Information System version 2 (DHIS2) – DHIS2-HMIS 105:01. Data for the year 2024/2025 were collected from EAFYA reports because the DHIS2-HMIS 105:01 report for that year hadn’t been uploaded at the time of data collection. Activities performed by the palliative care unit were identified from the unit’s annual reports for the study period. Data management and analysis: Data were entered and summarised in Microsoft Excel and Word. Descriptive statistics and charts were produced to present attendance trends and diagnosis-specific caseloads. The model of care was derived from a thematic analysis of reported activities: activities were listed, grouped into themes, and categorised into inpatient services, outpatient services, and care linkages. These were presented in flow diagrams. Overall unit attendance was calculated as the total number of visits per year. For each diagnosis, the proportion of patients receiving palliative care was calculated as follows: (number of patients with the diagnosis who attended the palliative care unit) ÷ (total number of patients with the diagnosis across the hospital). The overall proportion of patients who received palliative care was calculated as: (the total number of patients with cancer, HIV complications, and SCD who attended the palliative care unit) ÷ (the total number of inpatients and outpatients with cancer, HIV complications, and SCD across the hospital). Ethical consideration Ethical approval and administrative clearance were obtained from the FPRRH Research and Ethics Committee and the hospital administration before data collection. Written consent was waived by (FPRRH-REC) since the study did not involve direct contact with patients, as data were collected from registers and unit reports. The study was conducted in accordance with the Declaration of Helsinki on medical research involving human subjects[ 18 ]. Results Overall patient attendance Between July 2019 and June 2025, a total of 1,773 patients were seen at the Fort Portal Regional Referral Hospital (FPRRH) Palliative Care Unit. Of these, 959 (54.1%) had cancer, 16 (0.9%) presented with HIV-related complications, 133 (7.5%) had sickle cell disease (SCD), and 665 (37.5%) had other diagnoses. In total, 1,108 patients with cancer, HIV-related complications, or SCD attended the palliative care unit during the study period. Annual attendance trends are presented in Fig. 1. Figure 1: Palliative care unit attendance for each year from July 2019 to June 2025 Figure 2 . Palliative care unit attendance by diagnosis, sex, and age group. (Children are those below 18 years of age) From 2019 to 2024, patient data for both inpatients and outpatients were recorded in a single register (HMIS 008), making it impossible to disaggregate attendance by care setting. For the year 2024/2025, however, data obtained from the EAFYA system documented 440 patients, comprising 324 (73.6%) outpatients and 116 (26.4%) inpatient encounters. For the 116 inpatient encounters, disaggregation by sex, age group, or diagnosis was not feasible, as the EAFYA workload report did not include patient identifiers necessary to retrieve complete records. Consequently, these inpatient data were excluded from analyses stratified by demographic and diagnostic categories. Therefore, the analysis of attendance by sex, age group, and diagnosis was restricted to 1,657 patients, as shown in Fig. 2. Palliative Care Utilisation Across the hospital, 4,807 patients were identified as potentially requiring palliative care based on diagnoses of cancer, HIV-related complications, and sickle cell disease (SCD). Of these, 1,108 patients attended the Palliative Care Unit, representing 23% of those estimated to need care (1,108/4,807). Figure 3 presents the annual proportion of patients who received palliative care, while Fig. 4 compares attendance by diagnosis against the estimated need. Figure 3: Proportions of patients who received palliative care compared to those who may have needed it (for each year). By diagnosis, 2,591 patients with SCD were considered in need of palliative care, of whom 133 (5.1%) attended the unit. Among 1,137 patients with HIV-related complications, 16 (1.4%) received palliative care. In contrast, of 1,079 cancer patients potentially requiring palliative care, 959 (89%) accessed services. Palliative Care Model A hospital-based palliative care model was observed, operating through both outpatient and inpatient pathways. The model was characterised by the following themes, which informed the development of the flow diagrams: Patient management : Delivered through outpatient visits and inpatient reviews. Collaborative care planning : Liaison with other specialists to facilitate patient referral to palliative care and support treatment planning. Psychosocial assessment and family support. Care continuity : Referral, linkages to other health centres, and follow-up through phone calls. Mentorship : Continuous Medical Education (CME) and mentoring of students and staff. The model is illustrated in Figs. 5 and 6. Activities not implemented at the time of the study, and therefore excluded from the model, included outreach to lower-level facilities and support supervision of palliative care services in those facilities. Figure 5 outlines the care flow across inpatient and outpatient pathways, while Fig. 6 illustrates care continuity and linkages to public facilities and home-based care. It also depicts the palliative care services proposed for delivery at various levels of lower health centres, with home visits specifically recommended to be conducted by health centres. Figure 6 . An illustration of linkage between FPRRH, other public health facilities, and home based care. Figure 5 . Intra-hospital pathways (outpatient and inpatient). Discusion This study evaluated attendance at the Fort Portal Regional Referral Hospital (FPRRH) palliative care unit from 2019 to 2025, estimated the proportion of patients receiving palliative care relative to those in need, and described the unit’s model of care. Overall, 54.1% of patients attending the palliative care unit were cancer patients, and 45.9% had non‑cancer diagnoses. During the study period, 89% of cancer patients who attended FPRRH were seen in the palliative care unit, compared with 5.1% for sickle cell disease and 1.4% for HIV. These differences indicate that cancer patients are more likely to be referred for specialist palliative care than patients with HIV complications and SCD [ 19 ]. This pattern likely reflects greater clinician awareness of palliative needs in cancer, due to clearer disease trajectories, and established oncology–palliative referral pathways that facilitate linkage to services[ 20 ]. However, the sizeable proportion of other non‑cancer patients (45.9%) attending the unit suggests growing recognition of palliative needs beyond oncology at FPRRH. This finding is noteworthy, as existing evidence demonstrates that individuals with chronic life‑limiting conditions other than cancer account for a considerable proportion of palliative care needs[ 21 ]. Accordingly, the development and implementation of targeted interventions are essential to improve equitable access to specialist palliative care for these populations[ 21 – 23 ]. Developing clearer care pathways for chronic non‑cancer conditions may improve their referral and linkage to palliative services. Only 6% of patients were children, underscoring the limited access to pediatric palliative care. This finding aligns with evidence from other low‑income settings, where pediatric referrals are typically infrequent and delayed, often attributable to limited palliative care knowledge among pediatric practitioners[ 24 – 27 ]. Barriers and facilitators to pediatric palliative care operate across multiple levels—including patient, health worker, interpersonal, and organisational domains—and encompass factors such as staff knowledge, family attitudes, cultural beliefs, referral protocols, and policy gaps.[ 25 – 28 ]. Geographic and health‑system constraints such as limited funding, infrastructure, essential medications, and culturally adapted services further reduce access for children in low‑ and middle‑income countries[ 27 , 29 ]. Addressing these barriers is critical to expanding the coverage and strengthening the quality of pediatric palliative care services. Patient attendance increased in 2024–2025 compared with previous years, potentially reflecting greater awareness of the palliative care service and improved patient linkage to the unit. During this period, outpatient visits accounted for 73.6% of encounters, while inpatient consultations comprised 26.4%, highlighting limited inpatient utilisation relative to outpatient care. Notably, inpatient palliative consultations confer important benefits, including enhanced symptom control, caregiver support, and improved coordination of care with primary teams[ 30 – 32 ], yet physician scepticism, limited knowledge, and resource constraints—especially staffing shortages—can restrict inpatient referrals[ 30 , 32 ]. Staffing shortages can also limit the capacity of palliative care units to enrol large numbers of inpatients. Further studies exploring the barriers and facilitators for inpatient palliative care utilisation are recommended. Education to improve physicians’ understanding, strategies to strengthen palliative care staff resilience, and prioritisation of resources may be necessary to expand inpatient coverage[ 30 , 32 , 33 ]. The proportion of patients who received palliative care relative to those estimated to need it was 23%, exceeding previously reported national and global estimates of 11% for Uganda and 14% worldwide.[ 34 , 35 ]. This suggests that efforts to integrate palliative care into public healthcare at FPRRH have contributed to improved access. Nonetheless, it should be noted that this study did not account for other conditions potentially requiring palliative care, such as non‑malignant chronic illnesses beyond HIV‑related complications and sickle cell disease. The unit’s model of care demonstrates both intra‑hospital and inter‑hospital collaboration, which supports coordinated, efficient patient care and effective transitions across settings—including home‑based care[ 36 , 37 ]. The intra‑hospital model resembles interdisciplinary consultation teams described in other hospital settings and aligns with International Association of Hospice and Palliative Care (IAHPC) recommendations that hospital palliative teams proactively identify patients on wards[ 38 , 39 ]. Integrating multi‑specialist expertise can promote timely specialist consultations and facilitate knowledge exchange.[ 36 , 40 , 41 ]. Use of phone consultations for follow‑up is consistent with expanding mobile health approaches that support ongoing communication with patients and caregivers[ 36 , 42 ]. Phone follow‑up can be a feasible alternative to in‑person care and has been shown to improve pain management, communication about clinical status, and medication support[ 43 , 44 ]. A clear limitation of phone‑based follow‑up is inequitable access for patients who cannot afford a cellphone. Home visits for patients receiving home-based care were proposed to be conducted by lower-level health centres due to their smaller catchment areas, which increases the likelihood of being located closer to patients within the community. A major strength of this study is the six‑year observation period, which provides a robust view of palliative care access and service delivery at the hospital. The study also documents pathways within hospital‑based palliative care that can inform the establishment or strengthening of units in other public hospitals. A limitation is that the study is single‑site and may not represent the extent of palliative care integration across referral hospitals in Uganda. Larger multi‑site studies are needed to confirm these findings nationally and to identify context‑specific barriers and facilitators to integration. In conclusion, Fort Portal Regional Referral Hospital has made measurable progress in integrating specialist palliative care into hospital services between 2019 and 2025, achieving higher coverage (23%) than commonly reported national and global estimates. Integration has been strongest for cancer patients, though nearly half of attendees had non‑cancer diagnoses, indicating growing recognition of palliative needs beyond oncology and the need to expand tailored pathways for other chronic life‑limiting conditions. Significant gaps remain: paediatric access is very low, and inpatient utilisation is limited relative to outpatient visits. The hospital’s model—characterised by interdisciplinary intra‑hospital teams, inter‑hospital linkages, and phone‑based follow‑up—offers a practical and potentially replicable framework for referral hospitals seeking to strengthen palliative services. Larger multi‑site studies are recommended to validate these findings at the national scale and to identify strategies for equitable scaling of palliative care across Uganda’s public hospitals. Abbreviations 1. FPRRH Fort Portal Regional Referral Hospital 2. SCD Sickle Cell Disease 3. HMIS Health Management Information System 4. EAFYA Combination of the two words:Electronic and AFYA (Swahili word for health) 5. DHIS2 District Health Information System version 2 6. CME Continuous Medical Education 7. HIV Human Immunodeficiency Virus 8. IAHPC International Association of Hospice and Palliative Care Declarations Ethics approval: approval was obtained from Fort Portal Regional Referral Hospital Research and Ethics Committee (FPRRH-REC) and the hospital administration before data collection. The study was conducted in accordance with the Declaration of Helsinki on research involving human subjects. Human Ethics and Consent to Participate declarations: not applicable Availability of data and materials : The data sets supporting the findings of this study are available in the supplementary information files Competing interest: The corresponding author is a staff member at FPRRH Funding: The study received no funding from sources other than the authors’ Author Contributions : IB: conceptualised, designed the study and wrote the main manuscript DB : participated in study planning and data collection Consent for publication : Not applicable Acknowledgement : Anabo Annamaria: reviewed and advised on the model of care. Microsoft Copilot was used in the palliative care model theme development and overall language refinement. Author Information: IB is the palliative care focal person at FPRRH. He has a BSc. Palliative care from Makerere University, and an MSc. Clinical Oncology from the University of Birmingham BD is a palliative care Nurse affiliated with Fort Portal regional referral hospital References Ogieuhi IJ, Aderinto N, Olatunji G, et al. Enhancing palliative care integration in African healthcare systems: a review of strategies and recommendations. Discov Med. 2025;2:46. Grant L, Downing J, Luyirika E et al. Integrating palliative care into national health systems in Africa: a multi–country intervention study. J Glob Health; 7: 010419. Court L, Olivier J. Approaches to integrating palliative care into African health systems: a qualitative systematic review. Health Policy Plan. 2020;35:1053–69. What is Specialist palliative care services - Meaning and definition -, Pallipedia. 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The corresponding author is a senior staff member at Fort Portal Regional Referral Hospital Supplementary Files Dataset.xlsx Datacollectiontool3.pdf Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 27 Feb, 2026 Reviews received at journal 27 Feb, 2026 Reviews received at journal 30 Jan, 2026 Reviewers agreed at journal 22 Jan, 2026 Reviewers agreed at journal 21 Jan, 2026 Reviews received at journal 19 Jan, 2026 Reviewers agreed at journal 19 Jan, 2026 Reviewers agreed at journal 15 Jan, 2026 Reviewers invited by journal 14 Jan, 2026 Editor invited by journal 23 Dec, 2025 Editor assigned by journal 22 Dec, 2025 Submission checks completed at journal 22 Dec, 2025 First submitted to journal 16 Dec, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8373194","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":575196515,"identity":"4a6886b0-4526-49e8-8130-7a6e051e13a2","order_by":0,"name":"Ian Batanda","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA2klEQVRIiWNgGAWjYBACNgkwxczAz94ApA0siNLC2ADSItlzAKRFgghrYFoMbiRAuAQBn3Tz8wc/d1jLS858fnXDjwIJBv727gT8DpM5ZtjYeybdsF86p+xmD9BhEmfObiDglwTDBt62w4wzZ+ek3eABajGQyCWkJf1j49+2w/Ybbp5Ju/mHOC05hs1AWxI33GA/dps4W2TOFM6WbUtPntmTw3ZbxkCCh6Bf5Ge3b/j4ts3atp/9+LObb/7YyPG39+LXggR4DMAkscpBgP0BKapHwSgYBaNgBAEA2eFI2KxoEyUAAAAASUVORK5CYII=","orcid":"","institution":"Fort Portal Regional Referral Hospital","correspondingAuthor":true,"prefix":"","firstName":"Ian","middleName":"","lastName":"Batanda","suffix":""},{"id":575196516,"identity":"874c30cf-bb12-428e-bdd4-a56960e373e9","order_by":1,"name":"Dorothy Birungi","email":"","orcid":"","institution":"Fort Portal Regional Referral Hospital","correspondingAuthor":false,"prefix":"","firstName":"Dorothy","middleName":"","lastName":"Birungi","suffix":""}],"badges":[],"createdAt":"2025-12-16 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08:14:54","extension":"xml","order_by":7,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":76451,"visible":true,"origin":"","legend":"","description":"","filename":"4b5098b2ae114598bf08510b060666d81structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/c1e98ed1192eecb67aebc6bd.xml"},{"id":100432858,"identity":"bf6805df-9422-4561-a248-83980d90204e","added_by":"auto","created_at":"2026-01-16 15:07:26","extension":"html","order_by":8,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":88481,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/f09da0754a85f7e2ca012d3a.html"},{"id":100432841,"identity":"a82dc22f-53ea-4af7-9420-30ad997ccfab","added_by":"auto","created_at":"2026-01-16 15:07:26","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":75668,"visible":true,"origin":"","legend":"\u003cp\u003ePalliative care unit attendance for each year from July 2019 to June 2025\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/af9da9abcaf53ae6635cd7b2.png"},{"id":100546392,"identity":"8f687698-63d7-4fd1-8eef-0cb6726403c7","added_by":"auto","created_at":"2026-01-19 08:08:00","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":97534,"visible":true,"origin":"","legend":"\u003cp\u003ePalliative care unit attendance by diagnosis, sex, and age group. (Children are those below 18 years of age)\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/4e4a2a05e87594d30ca64f7e.png"},{"id":100546854,"identity":"b1747982-d872-42d1-9ee4-fc53939d6f50","added_by":"auto","created_at":"2026-01-19 08:12:57","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":108317,"visible":true,"origin":"","legend":"\u003cp\u003eProportions of patients who received palliative care compared to those who may have needed it (for each year).\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/2bcb15ca067368e76f244961.png"},{"id":100546620,"identity":"13ca138e-034f-489d-b07f-124f28ec4bc4","added_by":"auto","created_at":"2026-01-19 08:11:20","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":124353,"visible":true,"origin":"","legend":"\u003cp\u003eNumber of patients who received palliative care compared to those who may have needed it\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/c9ad6c716874f391612bcdf4.png"},{"id":100546413,"identity":"5a94a0f5-c6ae-4bb1-aeda-eec409b8525a","added_by":"auto","created_at":"2026-01-19 08:08:17","extension":"png","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":286435,"visible":true,"origin":"","legend":"\u003cp\u003eIntra-hospital pathways (outpatient and inpatient).\u003c/p\u003e","description":"","filename":"5.png","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/d3ecbf4a0643d2ead86ab816.png"},{"id":100432855,"identity":"a866a8a7-37cc-415b-b1ba-30de243787db","added_by":"auto","created_at":"2026-01-16 15:07:26","extension":"png","order_by":6,"title":"Figure 6","display":"","copyAsset":false,"role":"figure","size":212148,"visible":true,"origin":"","legend":"\u003cp\u003eAn illustration of linkage between FPRRH, other public health facilities, and home based care.\u003c/p\u003e","description":"","filename":"6.png","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/e88d2cec3a228488e88c7f10.png"},{"id":100554262,"identity":"04bc0d8e-d253-40c9-a7a1-88dc2e5c0e05","added_by":"auto","created_at":"2026-01-19 08:38:38","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1409286,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/c2ee1b23-3a9d-40b2-b5d3-77499e011d89.pdf"},{"id":100432842,"identity":"012e317f-b8cf-45b1-8dc5-566dd2c50b7a","added_by":"auto","created_at":"2026-01-16 15:07:26","extension":"xlsx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":12737,"visible":true,"origin":"","legend":"","description":"","filename":"Dataset.xlsx","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/dbc3df47e7d814ee49ed800e.xlsx"},{"id":100546448,"identity":"3b5cfb2d-f609-408b-a725-1be09a2b3d7b","added_by":"auto","created_at":"2026-01-19 08:08:43","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":132500,"visible":true,"origin":"","legend":"","description":"","filename":"Datacollectiontool3.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8373194/v1/244af0618b0674cbee1a2a68.pdf"}],"financialInterests":"Competing interest reported. The corresponding author is a senior staff member at Fort Portal Regional Referral Hospital","formattedTitle":"Evaluating the Integration of Palliative Care in Uganda’s Referral Hospitals: A Case Study of Fort Portal Regional Referral Hospital","fulltext":[{"header":"Introduction","content":"\u003cp\u003eIntegrating palliative care into public healthcare systems is a critical strategy for strengthening health services and expanding access to specialist support for individuals with complex needs arising from chronic, life-limiting illnesses[\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Specialist palliative care addresses the multifaceted physical and psychosocial challenges faced by patients and their families[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. These challenges may include symptoms such as chronic pain, vomiting, breathlessness, and fungating wounds, as well as psychosocial distress\u0026mdash;manifesting as anxiety, depression, unrealistic treatment expectations, denial, caregiver burnout, non-adherence to treatment, communication barriers, and emotional resistance[\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite its importance, global access to palliative care remains limited due to low public awareness, competing health priorities, and weak integration within health systems[\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. In Europe, although progress has been made, integration into national health services remains low, with only 12 countries having formal policies that regulate palliative care provision[\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Similarly, in Africa, many palliative care services operate independently of national health systems, and only 11 countries, including Uganda, have developed national policy frameworks or programs to guide integration[\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhere palliative care is available, it is often delivered by non-governmental organisations through home-based, hospice, and outreach models [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], with limited presence in public hospitals. A key approach to achieving full integration involves establishing sustainable palliative care services within public hospitals, where most citizens receive care, and linking these services to community-based models to ensure continuity of care[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eUganda has made notable strides toward integration, including a 2021 Ministry of Health directive mandating the allocation of space for palliative care in referral hospitals. As a result, national and regional referral hospitals have begun establishing dedicated palliative care units.[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Fort Portal Regional Referral Hospital (FPRRH) is among these institutions, operating a unit dedicated to integrating palliative care within hospital services and providing comprehensive support to patients and families[\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eHowever, there remains a paucity of literature describing replicable hospital-based palliative care models for reference. Availability of literature detailing hospital palliative services would be essential to guide the development of new hospital units, inform human resource planning, and support resource mobilisation. While the Mulago-Makerere Palliative Care Unit, established in 2008, is a well-established example operating within Uganda\u0026rsquo;s public health system, its patient pathways are not widely documented[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Moreover, the impact of recent integration efforts on access to palliative care in Ugandan public hospitals has not been systematically evaluated, limiting evidence‑based planning. This study evaluates integration at Fort Portal Regional Referral Hospital as a case study to address that gap. Specifically, the study sought to assess overall attendance at the palliative care unit between 2019 and 2025, estimate service utilisation through the proportion of patients receiving palliative care relative to those in need, and describe the model of care employed. The findings aim to inform and support policymakers and health system managers in establishing and advancing sustainable, integrated palliative care within low-resource public hospitals.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and setting:\u003c/h2\u003e \u003cp\u003e This retrospective descriptive case study evaluated the integration of palliative care at Fort Portal Regional Referral Hospital (FPRRH), a referral-level hospital serving the Rwenzori subregion. FPRRH\u0026rsquo;s mandate includes promotive, preventive, curative, palliative, and rehabilitative services[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. The hospital serves eight districts (Kabarole, Kamwenge, Kasese, Ntoroko, Bundibugyo, Bunyangabu, Kyenjojo, Kyegegwa) and Fort Portal City, and recorded 47,504 outpatient visits and 10,697 inpatient admissions between July and December 2021 (bed occupancy 67%)[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eStudy population\u003c/h3\u003e\n\u003cp\u003eThe study population comprised all patients who attended the palliative care unit at FPRRH from July 2019 to June 2025. Analyses focused on overall attendance and attendance by the selected diagnoses: Cancer, Human Immunodeficiency Virus (HIV) complications, and sickle cell disease (SCD), because they are highlighted in the Ministry of Health\u0026rsquo;s Health Unit Palliative Care monthly report (Health Management Information System (HMIS)105).\u003c/p\u003e\n\u003ch3\u003eOutcomes\u003c/h3\u003e\n\u003cp\u003eThe primary outcomes were: (1) annual attendance at the palliative care unit and (2) the proportion of patients who received palliative care relative to those who potentially needed it, based on diagnosis. The secondary outcome was the palliative care model delivered at FPRRH. For this study, patients who potentially needed palliative care were defined as inpatients and outpatients with cancer, HIV complications, or SCD across the hospital. Some of the HIV complications that were considered to need palliative care included psychosis, tuberculosis, oral lesions, and depression.\u003c/p\u003e\n\u003ch3\u003eInclusion and exclusion\u003c/h3\u003e\n\u003cp\u003eThe study included all patient attendance records from palliative care registers and electronic medical records (July 2019\u0026ndash;June 2025). All implemented unit activities reported during the study period were included in the description of the service model.\u003c/p\u003e \u003cp\u003ePlanned activities that had not been implemented were excluded from the analysis of the care model to ensure the model reflects actual services delivered.\u003c/p\u003e\n\u003cdiv class=\"Heading\"\u003e\u003cb\u003eData Collection Instrument and Procedure\u003c/b\u003e:\u003c/div\u003e \u003cp\u003eA standardised tally sheet was used to collect annual attendance figures and unit activities. Data on patients who attended the Palliative Care Unit between July 2019 and October 2024 were obtained from archived Palliative Care Unit registers (Health Management Information System (HMIS) 008). Data for the period November 2024 to July 2025 were retrieved from the electronic medical records system, EAFYA. (EAFYA is a combination of the two words: Electronic, and AFYA \u0026ndash; a Swahili word for Health)[\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eData on inpatients for the year 2024/2025 were obtained from the EAFYA workload report for the individual palliative care unit staff. This gave a summary of total inpatient encounters.\u003c/p\u003e \u003cp\u003eData on those who potentially needed palliative care (totals for each diagnosis) for the years 2019/2020 to 2023/2024 were collected from the HMIS 105:01 report in the District Health Information System version 2 (DHIS2) \u0026ndash; DHIS2-HMIS 105:01. Data for the year 2024/2025 were collected from EAFYA reports because the DHIS2-HMIS 105:01 report for that year hadn\u0026rsquo;t been uploaded at the time of data collection.\u003c/p\u003e \u003cp\u003eActivities performed by the palliative care unit were identified from the unit\u0026rsquo;s annual reports for the study period.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eData management and analysis:\u003c/h2\u003e \u003cp\u003eData were entered and summarised in Microsoft Excel and Word. Descriptive statistics and charts were produced to present attendance trends and diagnosis-specific caseloads.\u003c/p\u003e \u003cp\u003eThe model of care was derived from a thematic analysis of reported activities: activities were listed, grouped into themes, and categorised into inpatient services, outpatient services, and care linkages. These were presented in flow diagrams.\u003c/p\u003e \u003cp\u003eOverall unit attendance was calculated as the total number of visits per year. For each diagnosis, the proportion of patients receiving palliative care was calculated as follows: (number of patients with the diagnosis who attended the palliative care unit) \u0026divide; (total number of patients with the diagnosis across the hospital). The overall proportion of patients who received palliative care was calculated as: (the total number of patients with cancer, HIV complications, and SCD who attended the palliative care unit) \u0026divide; (the total number of inpatients and outpatients with cancer, HIV complications, and SCD across the hospital).\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eEthical consideration\u003c/h3\u003e\n\u003cp\u003e \u003cstrong\u003eEthical approval\u003c/strong\u003e \u003cp\u003eand administrative clearance were obtained from the FPRRH Research and Ethics Committee and the hospital administration before data collection. Written consent was waived by (FPRRH-REC) since the study did not involve direct contact with patients, as data were collected from registers and unit reports. The study was conducted in accordance with the Declaration of Helsinki on medical research involving human subjects[\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eOverall patient attendance\u003c/h2\u003e \u003cp\u003eBetween July 2019 and June 2025, a total of 1,773 patients were seen at the Fort Portal Regional Referral Hospital (FPRRH) Palliative Care Unit. Of these, 959 (54.1%) had cancer, 16 (0.9%) presented with HIV-related complications, 133 (7.5%) had sickle cell disease (SCD), and 665 (37.5%) had other diagnoses. In total, 1,108 patients with cancer, HIV-related complications, or SCD attended the palliative care unit during the study period. Annual attendance trends are presented in Fig.\u0026nbsp;1. Figure\u0026nbsp;1: \u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003ePalliative care unit attendance for each year from July 2019 to June 2025\u003c/span\u003e\u003c/p\u003e \u003cp\u003e \u003cspan type=\"BoldSmallCaps\" class=\"BoldSmallCaps\" name=\"Emphasis\"\u003eFigure 2\u003c/span\u003e. \u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003ePalliative care unit attendance by diagnosis, sex, and age group. (Children are those below 18 years of age)\u003c/span\u003e\u003c/p\u003e \u003cp\u003eFrom 2019 to 2024, patient data for both inpatients and outpatients were recorded in a single register (HMIS 008), making it impossible to disaggregate attendance by care setting. For the year 2024/2025, however, data obtained from the EAFYA system documented 440 patients, comprising 324 (73.6%) outpatients and 116 (26.4%) inpatient encounters. For the 116 inpatient encounters, disaggregation by sex, age group, or diagnosis was not feasible, as the EAFYA workload report did not include patient identifiers necessary to retrieve complete records. Consequently, these inpatient data were excluded from analyses stratified by demographic and diagnostic categories. Therefore, the analysis of attendance by sex, age group, and diagnosis was restricted to 1,657 patients, as shown in Fig.\u0026nbsp;2.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003ePalliative Care Utilisation\u003c/h2\u003e \u003cp\u003eAcross the hospital, 4,807 patients were identified as potentially requiring palliative care based on diagnoses of cancer, HIV-related complications, and sickle cell disease (SCD). Of these, 1,108 patients attended the Palliative Care Unit, representing 23% of those estimated to need care (1,108/4,807). Figure\u0026nbsp;3 presents the annual proportion of patients who received palliative care, while Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e4\u003c/span\u003e compares attendance by diagnosis against the estimated need. Figure\u0026nbsp;3: \u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003eProportions of patients who received palliative care compared to those who may have needed it (for each year).\u003c/span\u003e\u003c/p\u003e \u003cp\u003eBy diagnosis, 2,591 patients with SCD were considered in need of palliative care, of whom 133 (5.1%) attended the unit. Among 1,137 patients with HIV-related complications, 16 (1.4%) received palliative care. In contrast, of 1,079 cancer patients potentially requiring palliative care, 959 (89%) accessed services.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003ePalliative Care Model\u003c/h2\u003e \u003cp\u003eA hospital-based palliative care model was observed, operating through both outpatient and inpatient pathways. The model was characterised by the following themes, which informed the development of the flow diagrams:\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003ePatient management\u003c/b\u003e: Delivered through outpatient visits and inpatient reviews.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eCollaborative care planning\u003c/b\u003e: Liaison with other specialists to facilitate patient referral to palliative care and support treatment planning.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003ePsychosocial assessment and family support.\u003c/b\u003e \u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eCare continuity\u003c/b\u003e: Referral, linkages to other health centres, and follow-up through phone calls.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eMentorship\u003c/b\u003e: Continuous Medical Education (CME) and mentoring of students and staff.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eThe model is illustrated in Figs.\u0026nbsp;5 and 6. Activities not implemented at the time of the study, and therefore excluded from the model, included outreach to lower-level facilities and support supervision of palliative care services in those facilities. Figure\u0026nbsp;5 outlines the care flow across inpatient and outpatient pathways, while Fig.\u0026nbsp;6 illustrates care continuity and linkages to public facilities and home-based care. It also depicts the palliative care services proposed for delivery at various levels of lower health centres, with home visits specifically recommended to be conducted by health centres.\u003c/p\u003e \u003cp\u003e \u003cspan type=\"BoldSmallCaps\" class=\"BoldSmallCaps\" name=\"Emphasis\"\u003eFigure 6\u003c/span\u003e. \u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003eAn illustration of linkage between FPRRH, other public health facilities, and home based care.\u003c/span\u003e\u003c/p\u003e \u003cp\u003e \u003cspan type=\"BoldSmallCaps\" class=\"BoldSmallCaps\" name=\"Emphasis\"\u003eFigure 5\u003c/span\u003e. \u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003eIntra-hospital pathways (outpatient and inpatient).\u003c/span\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"Discusion","content":"\u003cp\u003eThis study evaluated attendance at the Fort Portal Regional Referral Hospital (FPRRH) palliative care unit from 2019 to 2025, estimated the proportion of patients receiving palliative care relative to those in need, and described the unit\u0026rsquo;s model of care.\u003c/p\u003e \u003cp\u003eOverall, 54.1% of patients attending the palliative care unit were cancer patients, and 45.9% had non‑cancer diagnoses. During the study period, 89% of cancer patients who attended FPRRH were seen in the palliative care unit, compared with 5.1% for sickle cell disease and 1.4% for HIV. These differences indicate that cancer patients are more likely to be referred for specialist palliative care than patients with HIV complications and SCD [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. This pattern likely reflects greater clinician awareness of palliative needs in cancer, due to clearer disease trajectories, and established oncology\u0026ndash;palliative referral pathways that facilitate linkage to services[\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. However, the sizeable proportion of other non‑cancer patients (45.9%) attending the unit suggests growing recognition of palliative needs beyond oncology at FPRRH. This finding is noteworthy, as existing evidence demonstrates that individuals with chronic life‑limiting conditions other than cancer account for a considerable proportion of palliative care needs[\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Accordingly, the development and implementation of targeted interventions are essential to improve equitable access to specialist palliative care for these populations[\u003cspan additionalcitationids=\"CR22\" citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Developing clearer care pathways for chronic non‑cancer conditions may improve their referral and linkage to palliative services.\u003c/p\u003e \u003cp\u003eOnly 6% of patients were children, underscoring the limited access to pediatric palliative care. This finding aligns with evidence from other low‑income settings, where pediatric referrals are typically infrequent and delayed, often attributable to limited palliative care knowledge among pediatric practitioners[\u003cspan additionalcitationids=\"CR25 CR26\" citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Barriers and facilitators to pediatric palliative care operate across multiple levels\u0026mdash;including patient, health worker, interpersonal, and organisational domains\u0026mdash;and encompass factors such as staff knowledge, family attitudes, cultural beliefs, referral protocols, and policy gaps.[\u003cspan additionalcitationids=\"CR26 CR27\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Geographic and health‑system constraints such as limited funding, infrastructure, essential medications, and culturally adapted services further reduce access for children in low‑ and middle‑income countries[\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Addressing these barriers is critical to expanding the coverage and strengthening the quality of pediatric palliative care services.\u003c/p\u003e \u003cp\u003ePatient attendance increased in 2024\u0026ndash;2025 compared with previous years, potentially reflecting greater awareness of the palliative care service and improved patient linkage to the unit. During this period, outpatient visits accounted for 73.6% of encounters, while inpatient consultations comprised 26.4%, highlighting limited inpatient utilisation relative to outpatient care. Notably, inpatient palliative consultations confer important benefits, including enhanced symptom control, caregiver support, and improved coordination of care with primary teams[\u003cspan additionalcitationids=\"CR31\" citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e], yet physician scepticism, limited knowledge, and resource constraints\u0026mdash;especially staffing shortages\u0026mdash;can restrict inpatient referrals[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Staffing shortages can also limit the capacity of palliative care units to enrol large numbers of inpatients. Further studies exploring the barriers and facilitators for inpatient palliative care utilisation are recommended. Education to improve physicians\u0026rsquo; understanding, strategies to strengthen palliative care staff resilience, and prioritisation of resources may be necessary to expand inpatient coverage[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe proportion of patients who received palliative care relative to those estimated to need it was 23%, exceeding previously reported national and global estimates of 11% for Uganda and 14% worldwide.[\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. This suggests that efforts to integrate palliative care into public healthcare at FPRRH have contributed to improved access. Nonetheless, it should be noted that this study did not account for other conditions potentially requiring palliative care, such as non‑malignant chronic illnesses beyond HIV‑related complications and sickle cell disease.\u003c/p\u003e \u003cp\u003eThe unit\u0026rsquo;s model of care demonstrates both intra‑hospital and inter‑hospital collaboration, which supports coordinated, efficient patient care and effective transitions across settings\u0026mdash;including home‑based care[\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. The intra‑hospital model resembles interdisciplinary consultation teams described in other hospital settings and aligns with International Association of Hospice and Palliative Care (IAHPC) recommendations that hospital palliative teams proactively identify patients on wards[\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. Integrating multi‑specialist expertise can promote timely specialist consultations and facilitate knowledge exchange.[\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eUse of phone consultations for follow‑up is consistent with expanding mobile health approaches that support ongoing communication with patients and caregivers[\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. Phone follow‑up can be a feasible alternative to in‑person care and has been shown to improve pain management, communication about clinical status, and medication support[\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. A clear limitation of phone‑based follow‑up is inequitable access for patients who cannot afford a cellphone. Home visits for patients receiving home-based care were proposed to be conducted by lower-level health centres due to their smaller catchment areas, which increases the likelihood of being located closer to patients within the community.\u003c/p\u003e \u003cp\u003eA major strength of this study is the six‑year observation period, which provides a robust view of palliative care access and service delivery at the hospital. The study also documents pathways within hospital‑based palliative care that can inform the establishment or strengthening of units in other public hospitals.\u003c/p\u003e \u003cp\u003eA limitation is that the study is single‑site and may not represent the extent of palliative care integration across referral hospitals in Uganda. Larger multi‑site studies are needed to confirm these findings nationally and to identify context‑specific barriers and facilitators to integration.\u003c/p\u003e \u003cp\u003e In conclusion, Fort Portal Regional Referral Hospital has made measurable progress in integrating specialist palliative care into hospital services between 2019 and 2025, achieving higher coverage (23%) than commonly reported national and global estimates. Integration has been strongest for cancer patients, though nearly half of attendees had non‑cancer diagnoses, indicating growing recognition of palliative needs beyond oncology and the need to expand tailored pathways for other chronic life‑limiting conditions. Significant gaps remain: paediatric access is very low, and inpatient utilisation is limited relative to outpatient visits. The hospital\u0026rsquo;s model\u0026mdash;characterised by interdisciplinary intra‑hospital teams, inter‑hospital linkages, and phone‑based follow‑up\u0026mdash;offers a practical and potentially replicable framework for referral hospitals seeking to strengthen palliative services. Larger multi‑site studies are recommended to validate these findings at the national scale and to identify strategies for equitable scaling of palliative care across Uganda\u0026rsquo;s public hospitals.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e1. FPRRH\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eFort Portal Regional Referral Hospital\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e2. SCD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eSickle Cell Disease\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e3. HMIS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHealth Management Information System\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e4. EAFYA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eCombination of the two words:Electronic and AFYA (Swahili word for health)\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e5. DHIS2\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDistrict Health Information System version 2\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e6. CME\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eContinuous Medical Education\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e7. HIV\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHuman Immunodeficiency Virus\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e8. IAHPC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eInternational Association of Hospice and Palliative Care\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval:\u0026nbsp;\u003c/strong\u003eapproval was obtained from Fort Portal Regional Referral Hospital Research and Ethics Committee (FPRRH-REC) and the hospital administration before data collection. The study was conducted in accordance with the Declaration of Helsinki on research involving human subjects.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHuman Ethics and Consent to Participate declarations:\u003c/strong\u003e not applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e: The data sets\u0026nbsp;supporting the findings of this study\u0026nbsp;are available in the supplementary information files\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interest:\u0026nbsp;\u003c/strong\u003eThe corresponding author is a staff member \u0026nbsp; \u0026nbsp; at FPRRH\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eThe study received no funding from sources other than the authors\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions\u003c/strong\u003e\u003cstrong\u003e: \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eIB:\u0026nbsp;\u003c/strong\u003econceptualised, designed the study and wrote the main manuscript\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDB\u003c/strong\u003e: participated in study planning and data collection\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e: Not applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgement\u003c/strong\u003e: \u0026nbsp;Anabo Annamaria: reviewed and advised on the model of care.\u003c/p\u003e\n\u003cp\u003eMicrosoft Copilot was used in the palliative care model theme development and overall language refinement.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Information:\u003c/strong\u003e\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eIB is the palliative care focal person at FPRRH. He has a BSc. Palliative care from Makerere University, and an MSc. Clinical Oncology from the University of Birmingham \u0026nbsp;\u003c/li\u003e\n \u003cli\u003eBD is a palliative care Nurse affiliated with Fort Portal regional referral hospital\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eOgieuhi IJ, Aderinto N, Olatunji G, et al. Enhancing palliative care integration in African healthcare systems: a review of strategies and recommendations. Discov Med. 2025;2:46.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGrant L, Downing J, Luyirika E et al. Integrating palliative care into national health systems in Africa: a multi\u0026ndash;country intervention study. J Glob Health; 7: 010419.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCourt L, Olivier J. Approaches to integrating palliative care into African health systems: a qualitative systematic review. 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Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It. J Pain Symptom Manage. 2020;60:746\u0026ndash;53.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDowning J, Randall D, Mcnamara-Goodger K, et al. Children\u0026rsquo;s palliative care and public health: position statement. BMC Palliat Care. 2025;24:89.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eUmaretiya PJ, Wolfe J. Achieving Global Pediatric Palliative Care Equity\u0026mdash;What We Have Yet to Learn. JAMA Netw Open. 2022;5:e221253.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCoym A, Oechsle K, Kanitz A, et al. Impact, challenges and limits of inpatient palliative care consultations \u0026ndash; perspectives of requesting and conducting physicians. BMC Health Serv Res. 2020;20:86.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYeh JC, Urman AR, Besaw RJ, et al. 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BMC Palliat Care. 2024;23:40.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eValenti V, Rossi R, Scarpi E, et al. Nurse-led telephone follow-up for early palliative care patients with advanced cancer. J Clin Nurs. 2023;32:2846\u0026ndash;53.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMartins M, de L da C, Pinto S. Analysis of a telephone hotline for palliative care patients at home and their families. Int J Palliat Nurs. 2023;29:571\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Palliative Care, Uganda, hospital‑based model, service utilisation, cancer, sickle cell disease, HIV","lastPublishedDoi":"10.21203/rs.3.rs-8373194/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8373194/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThe integration of palliative care into public health services is a global priority, but it remains uneven in low-income settings. This study evaluated palliative care unit attendance, utilisation relative to need, and the model of care at Fort Portal Regional Referral Hospital (FPRRH) between 2019 and 2025.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA retrospective descriptive case study was conducted at FPRRH, a referral‑level hospital serving the Rwenzori subregion of Uganda. Facility records and palliative care unit documentation were reviewed to quantify patient attendance by diagnosis and age group, estimate the proportion of patients receiving specialist palliative care relative to those likely to need it, and describe the unit\u0026rsquo;s model of care. Data sources included HMIS 008 registers (2019\u0026ndash;2024), the EAFYA electronic medical records system (2024/2025), and District Health Information System (DHIS2) reports. Attendance was analysed using descriptive statistics, and the model of care was derived through thematic analysis of reported activities.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eBetween July 2019 and June 2025, 1,773 patients attended the palliative care unit. Of these, 959 (54.1%) had cancer and 814 (45.9%) had non‑cancer diagnoses. Overall, 89% of cancer patients accessed the unit compared with 5.1% of sickle cell disease patients and 1.4% of those with HIV‑related complications. Children comprised 6% of attendees. Attendance increased in 2024\u0026ndash;2025, primarily driven by outpatient visits (73.6%). Across the hospital, 4,807 patients were identified as potentially requiring palliative care, of whom 1,108 (23%) accessed services. The hospital‑based model emphasised symptom control, collaborative care planning, psychosocial support, care continuity, and mentorship.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003e FPRRH has made measurable progress in integrating specialist palliative care, achieving higher coverage than commonly reported national and global estimates. Persistent gaps include low paediatric access, limited inpatient utilisation, and under‑representation of non‑cancer conditions. The hospital\u0026rsquo;s model offers a replicable framework for strengthening palliative care in referral hospitals.\u003c/p\u003e","manuscriptTitle":"Evaluating the Integration of Palliative Care in Uganda’s Referral Hospitals: A Case Study of Fort Portal Regional Referral Hospital","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-16 15:07:21","doi":"10.21203/rs.3.rs-8373194/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-02-27T09:17:29+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-27T08:05:16+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-01-30T08:22:43+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"95549013240804760202783876244343371534","date":"2026-01-22T12:39:25+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"177436892681521337268573134067364297318","date":"2026-01-21T10:18:47+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-01-19T13:50:23+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"165444299003086658666955367786641596185","date":"2026-01-19T11:22:36+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"206083497621172771806996216106449933196","date":"2026-01-15T17:05:13+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-01-14T10:49:40+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-12-23T05:49:42+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-12-22T17:05:09+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-12-22T17:03:27+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2025-12-16T07:31:22+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"b91875f2-7a6d-4514-b857-5d73c2c32774","owner":[],"postedDate":"January 16th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-06T06:53:15+00:00","versionOfRecord":[],"versionCreatedAt":"2026-01-16 15:07:21","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8373194","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8373194","identity":"rs-8373194","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}