Vision-Related Quality of Life among Patients Attending the Diabetes and Eye Clinics in Kenyatta National Hospital, Kenya.

Objective: Our main objective was to determine the overall vision-related quality of life (VRQoL) among patients with diabetes mellitus attending the diabetes and eye clinics in Kenyatta National Hospital, Kenya. Design: Analytical cross-sectional study conducted in December 2020 setting: This study was performed at the Diabetes and Eye Clinics in Kenyatta National Hospital, the main national referral centre in Nairobi, Kenya. Participants. Using a purposive consecutive sampling method, we enrolled 100 participants, 50 with diabetic retinopathy and 50 without diabetic retinopathy. Main Outcomes and Measures. We compared the VRQoL of participants with diabetic retinopathy with those without diabetic retinopathy and assessed whether VRQoL worsened with increasing the severity of diabetic retinopathy. VRQoL was assessed using the World Health Organization/Prevention of Blindness and Deafness Vision Function-20 Questionnaire (VF-20). With this tool, the higher the mean score, the worse the quality of life. Diabetic retinopathy was graded using the Early Treatment of Diabetic Retinopathy Study. VRQoL trend with DR were analysed using the worse eye. Results: Participants with diabetic retinopathy had worse overall total VRQoL mean score (33.4, SD11.5) than those without (26.9, SD 4.7) in all domains; overall self-rating, 2.6 vs. 2.2, p < 0.001; general functioning, 18.0 vs. 14.7, p=0.005; psychosocial, 6.7 vs. 5.3, p < 0.001; and visual symptoms, 6.1 vs. 4.8, p < 0.001. VRQoL was worse with increasing severity of diabetic retinopathy in all domains moving from mild NPDR to moderate NPDR, severe NPDR and PDR, overall self-rating (2.2, 2.5, 3.5, 3.3; p < 0.001); visual symptoms (5.6, 5.6, 7.5, 7.4; p=0.002); psychosocial (5.7, 6.5, 6.0 8.8; p=0.004); and general functioning (15.7, 16.9, 17.5 23.6; p=0.014). Presence of DR, distance vision impairment, and diabetic macula oedema were associated with low overall self-rating. Conclusion and Relevance. Our findings underscore the need for interventions for early detection and management of diabetic retinopathy to prevent developing more advanced DR and its associated deterioration of VRQoL.

Opportunities and barriers for genetic service delivery in Kenya from a health personnel perspective.

Genetic counselling and testing are essential health services for the management of heritable diseases. However, in low-and-middle income countries like Kenya, genetic counsellors are not yet a licenced profession, and there is limited availability of and access to genetic testing. This study aimed to uncover opportunities and barriers for genetic service delivery in the Kenyan healthcare system from the perspectives of those who provide genetic testing and/or genetic counselling. Participants included Kenyan health personnel who deliver genetic services. This was a qualitative study that collected data via semi-structured one-on-one interviews and analyzed it using inductive thematic analysis. Participant demographics and characteristics of clinical genetic service provision were collected using a survey and results summarized using descriptive statistics. Themes revealed during analysis were compared to the clinical characteristics of genetic service provision to inform the opportunities and barriers. Fifteen interviews were conducted in total. Thematic analysis indicated that participants believed that the barriers facing genetic service delivery were linked to three themes: (1) education and training, (2) costs, and (3) counselling challenges. The opportunities for genetic service delivery were linked to four themes: (1) demand, (2) education and training, (3) encouraging a multidisciplinary approach to care, and (4) enhancing laboratory infrastructure. These findings are crucial for the development of a national evidence-informed and culturally appropriate model for genetic service delivery.

"Where Does it Come from?" Experiences Among Survivors and Parents of Children with Retinoblastoma in Kenya.

Genetic testing and counseling have become integral to the timely control of heritable cancers, like the childhood eye cancer retinoblastoma. This study aimed to determine attitudes, knowledge and experiences related to retinoblastoma genetics, among survivors and parents of children with retinoblastoma in Kenya. This qualitative study used focus groups as the primary data collection method, coupled with a brief demographic questionnaire. Study settings were Kenyatta National Hospital and Presbyterian Church of East Africa Kikuyu Hospital. Thematic analysis was used to identify key themes. Thirty-one individuals participated in five focus groups. Two main concepts emerged: (1) the origins of retinoblastoma are unclear, and (2) retinoblastoma is associated with significant challenges. The lack of clarity surrounding the origins of retinoblastoma was linked to limited knowledge of retinoblastoma genetics, and limited genetic counseling delivery and uptake. The challenges associated with retinoblastoma were discussed in terms of the impact of the diagnosis on individuals and families, and unmet healthcare needs related to the diagnosis. Next steps will incorporate these findings to develop evidence-informed and accessible cancer genetic services in Kenya.

Cancer genetics education in a low- to middle-income country: evaluation of an interactive workshop for clinicians in Kenya.

BACKGROUND: Clinical genetic testing is becoming an integral part of medical care for inherited disorders. While genetic testing and counseling are readily available in high-income countries, in low- and middle-income countries like Kenya genetic testing is limited and genetic counseling is virtually non-existent. Genetic testing is likely to become widespread in Kenya within the next decade, yet there has not been a concomitant increase in genetic counseling resources. To address this gap, we designed an interactive workshop for clinicians in Kenya focused on the genetics of the childhood eye cancer retinoblastoma. The objectives were to increase retinoblastoma genetics knowledge, build genetic counseling skills and increase confidence in those skills. METHODS: The workshop was conducted at the 2013 Kenyan National Retinoblastoma Strategy meeting. It included a retinoblastoma genetics presentation, small group discussion of case studies and genetic counseling role-play. Knowledge was assessed by standardized test, and genetic counseling skills and confidence by questionnaire. RESULTS: Knowledge increased significantly post-workshop, driven by increased knowledge of retinoblastoma causative genetics. One-year post-workshop, participant knowledge had returned to baseline, indicating that knowledge retention requires more frequent reinforcement. Participants reported feeling more confident discussing genetics with patients, and had integrated more genetic counseling into patient interactions. CONCLUSION: A comprehensive retinoblastoma genetics workshop can increase the knowledge and skills necessary for effective retinoblastoma genetic counseling.

Developing clinical cancer genetics services in resource-limited countries: the case of retinoblastoma in Kenya.

BACKGROUND/AIMS: Clinical cancer genetics is an integral part of cancer control and management, yet its development as an essential medical service has been hindered in many low-and-middle-income countries. We report our experiences in developing a clinical cancer genetics service for retinoblastoma in Kenya. METHODS: A genetics task force was created from within the membership of the existing Kenyan National Retinoblastoma Strategy group. The task force engaged in multiple in-person and telephone discussions, delineating experiences, opinions and suggestions for an evidence-based, culturally sensitive retinoblastoma genetics service. Discussions were recorded and thematically categorized to develop a strategy for the design and implementation of a national retinoblastoma clinical genetics service. RESULTS: Discussion among the retinoblastoma genetics task force supported the development of a comprehensive genetics service that rests on 3 pillars: (1) patient and family counseling, (2) community involvement, and (3) medical education. CONCLUSIONS: A coordinated national retinoblastoma genetics task force led to the creation of a unique and relevant approach to delivering comprehensive and accurate genetic care to Kenyan retinoblastoma patients. The task force aims to stimulate innovative approaches in cancer genetics research, education and knowledge translation, taking advantage of unique opportunities offered in the African context.