Health Services Needs Assessment for Retinoblastoma in Ethiopia.

PURPOSE: The aim of this study was to document the available resources and needs for the detection, diagnosis, and treatment of retinoblastoma (RB) in Ethiopia. METHODS: A health services needs assessment focused on RB care in Ethiopia was conducted. Information was obtained through a web-based survey and field visits. Facilities offering RB service delivery were categorized into three tiers, on the basis of the ability to detect (tier 1) and manage simple (tier 2) or complex (tier 3) patients with RB. Descriptive statistics were performed to quantify human and material resources available at each facility. RESULTS: The web survey received 29 responses from ophthalmologists at 19 health care facilities. Of the 19 units surveyed, seven (36.8%) had an ophthalmologist dedicated to RB treatment, classifying them as either a tier 2 or 3 facility. All tier 3 facilities had an affiliated health facility offering access to off-site pediatric oncology and pathology services. Of the focal therapies offered at tier 3 facilities, none included local chemotherapy or brachytherapy. Enucleation was offered at all tier 2 facilities, but availability of orbital implants and ocular prostheses was variable. None of the health facilities offered genetics services. CONCLUSION: This study demonstrated that the human and material resources needed for RB care in Ethiopia are constrained. Tier 3 RB facilities are rare and concentrated in urban areas, which could make it difficult for many patients to access. With focused capacity-building efforts, it is possible to increase the efficiency of RB therapy.

Referral patterns for retinoblastoma patients in Ethiopia.

BACKGROUND: Increased lag time between the onset of symptoms and treatment of retinoblastoma (RB) is one of the factors contributing to delay in diagnosis. The aim of this study was to understand the referral patterns and lag times for RB patients who were treated at Menelik II Hospital in Addis Ababa, Ethiopia. METHOD: A single-center, cross- sectional study was conducted in January 2018. All new patients with a confirmed RB diagnosis who had presented to Menelik II Hospital from May 2015 to May 2017 were eligible. A questionnaire developed by the research team was administered to the patient's caregiver by phone. RESULTS: Thirty-eight patients were included in the study and completed the phone survey. Twenty-nine patients (76.3%) delayed seeing a health care provider for ≥ 3 months from the onset of symptoms, with the most common reason being the belief that it was not a problem (96.5%), followed by 73% saying it was too expensive. The majority of patients (37/38, 97.4%) visited at least 1 additional health care facility prior to reaching a RB treatment facility. The mean overall lag time from noticing the first symptom to treatment was 14.31 (range 0.25-62.25) months. CONCLUSION: Lack of knowledge and cost are major barriers to patients first seeking care for RB symptoms. Cost and travel distance are major barriers to seeing referred providers and receiving definitive treatment. Delays in care may be alleviated by public education, early screening, and public assistance programs.

Caring for a child with retinoblastoma: Experience of Ethiopian parents.

OBJECTIVE: This study explored the lived experience of parents of children with retinoblastoma. DESIGN AND METHOD: A phenomenological qualitative study design was used, and a purposive sampling technique to recruit parents of children with retinoblastoma. Semi-structured interviews were conducted to document the lived experience of participants, who were asked to narrate their experiences caring for a child with retinoblastoma, thinking back to the day they learned about their child's condition, as well as their thoughts about the future. The interviews were conducted in Amharic and Oromo language, and audio recordings were transcribed and translated to English. Data were analyzed using thematic analysis. RESULTS: Thirteen parents (seven mothers, six fathers) participated in the study. Collectively, the children of the participants represented all the stages of the retinoblastoma journey (i.e., diagnosis, treatment, remission, and recurrence). Five major themes emerged from the thematic data analysis: (a) reactions when learning the child's condition; (b) receiving health care; (c) costs of caregiving; (d) support; and (e) uncertainties. CONCLUSION: The lived experiences of parents of children with retinoblastoma revealed a significant mental health and psychosocial burden. The sources of mental distress were found to be complex and varied. Holistic care for retinoblastoma should include programs that address the biopsychosocial needs of caregivers.

Clinicopathological Presentation of Retinoblastoma in Ethiopia.

Introduction: The presenting symptoms of retinoblastoma in Ethiopia, as well as their relationship to the stage of the disease, are poorly understood, but they could be important as background knowledge for creating early detection initiatives. This study aimed to describe the clinical and histopathological characteristics of retinoblastoma among Ethiopian patients. Methods: A hospital-based cross-sectional analysis of all children with newly diagnosed retinoblastoma during the study period of May 2015 to December 2019, inclusive, who presented to a tertiary referral center during were included. Demographic, clinical, and histological characteristics were collected and descriptive statistics were done using SPSS Version 20.0 software. Results: A total of 217 patients (unilateral 84.3%, bilateral 15.7%) were studied. The median age at presentation was 29 months (34 months vs. 19.5 months in unilateral and bilateral cases, respectively, p < 0.001). Among all patients, 57.8% were male. Leukocoria was the most common presenting sign (37.3%) and followed by fungating mass (31.8%). Tumors were extraocular in 40.1% of cases. From the intraocular cases, 73.3% were advanced International Intraocular Retinoblastoma Classification Group D or E disease. Sixty-two (54.4%) of the eyes had high-risk pathological features. The median lag time was significantly shorter for intraocular versus extraocular cases (5 months vs. 12 months, respectively, p < 0.001). Conclusion: Our results show that the majority of Ethiopian children with retinoblastoma have delayed presentation and late stage at diagnosis. This suggests that national health promotion campaigns to increase public knowledge on the presenting signs of retinoblastoma may be critical to achieving early diagnosis. Furthermore, the development of standard management guidelines informed by this study will be helpful in managing the complex and advanced cases currently observed.

Subconjunctival abscess formation after strabismus surgery.

We present 5 cases of postoperative subconjunctival abscesses from two institutions and discuss their outcomes.