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

Hill, Jennifer G.; Lee, M.; Njambi, L; Corson, Timothy W.; Dimaras, Helen

doi:10.1016/j.aogh.2015.02.850

Cited by 4 publications

(16 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The participants in our study expressed a need for psychosocial support and further education on genetics, suggesting that formal genetic counseling could be beneficial in the Kenyan setting. Our team has previously experimented with an innovative training module on cancer genetics to assist clinicians in filling the role of genetic counselor for retinoblastoma families (Hill et al 2015), however this was mainly focused on communicating genetics of the disease with clinical accuracy, and did not incorporate cultural or social factors into the training.…”

Section: Discussionmentioning

confidence: 99%

“…Diagnosis of retinoblastoma in Kenya is often late, even in cases where family history of disease is known (Nyamori et al 2012b). The KNRbS group has generated interest in the development of cancer genetic services for retinoblastoma (He et al 2014;Hill et al 2015). Genetic testing for retinoblastoma is not available in Kenya as of yet, with rare families able to afford and access testing outside the country.…”

Section: Introductionmentioning

confidence: 99%

“…Availability, access, and quality of genetic services varies in low-and-middle-income countries (LMICs) (Hawkins and Hayden 2011;He et al 2014;Hill et al 2015). This is in part attributable to a false impression that genetic services are irrelevant for LMICs (Wonkam et al 2010), leading to a diversion of resources away from this important health need.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

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

Gedleh

Lee

Hill

et al. 2017

Journal of Genetic Counseling

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Gedleh

Lee

Hill

et al. 2017

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

“…As modifiable risk factors for childhood cancer are unknown, efforts to increase timely diagnosis and access to effective treatment are crucial. A lack of both professional and public awareness of the early warning signs and symptoms (EWSS) of childhood cancer is a fundamental barrier in many LMICs 5,14–18 . An increased awareness of EWSS would contribute to more timely recognition of childhood cancers, referral for specialized care, diagnosis, and treatment initiation.…”

Section: Introductionmentioning

confidence: 99%

“…An increased awareness of EWSS would contribute to more timely recognition of childhood cancers, referral for specialized care, diagnosis, and treatment initiation. This in turn holds the possibility of less advanced stage disease and lower disease‐ and treatment‐related mortality 5,6,14–18 …”

Section: Introductionmentioning

confidence: 99%

Interventions to improve early detection of childhood cancer in low‐ and middle‐income countries: A systematic review

Zabih

Thota

Mbah

et al. 2020

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background: Childhood cancer outcomes in low-and middle-income countries (LMICs) lag behind those in high-income countries (HICs), in part due to late presentation and diagnosis. Though several interventions targeting early detection of childhood cancer have been implemented in LMICs, little is known about their efficacy. Methods: We conducted a systematic review to identify studies describing such interventions. We searched multiple databases from inception to December 4, 2019. Studies were included if they reported on LMIC interventions focused on: (a) training of health care providers on early recognition of childhood cancer, or (ii) public awareness campaigns. We used preferred reporting items for systematic reviews and metaanalyses (PRISMA) guidelines to conduct our review. The risk of bias in nonrandomized studies of interventions (ROBINS-I) checklist was used to assess quality of studies. Results: Twelve studies met inclusion criteria (n = 5 full text, n = 7 abstract only). Five studies focused on retinoblastoma only, while the others focused on all types of childhood cancer. The majority studied multiple interventions of which early detection was one component, but reported overall outcomes. All identified studies used pre-post evaluative designs to measure efficacy. Five studies reported statistically significant results postintervention: decrease in extraocular spread of retinoblastoma, decrease in rates of refusal/abandonment of treatment, increase in number of new referrals, increase in knowledge, and an absolute increase in median 5-year survival. Other studies reported improvements without tests of statistical significance. Two studies reported no difference in survival postintervention. The ROBINS-I checklist indicated that all studies were at serious risk of bias. Conclusion: Though current evidence suggests that LMIC interventions targeting early detection of childhood cancer through health professional training and/or public awareness campaigns may be effective, this evidence is limited and of poor quality. Robust trials or quasi-experimental designs with long-term follow up are needed to identify the most effective interventions. Such studies will facilitate and inform the widespread uptake of early detection interventions across LMIC settings.

show abstract

The introduction of clinical genetic testing in Ethiopia: Experiences and lessons learned

Quinonez

Terefework²

2021

American J of Med Genetics Pt A

View full text Add to dashboard Cite

Limited data are available on genetic testing laboratories in low-and middle-income countries including those in sub-Saharan Africa (SSA). To characterize the need for genetic testing in SSA we describe the experience of MRC-ET Advanced Laboratory, a genetic testing laboratory in Ethiopia. Test results were analyzed based on indication(s) for testing, referral category, and diagnostic yield. A total of 1311 tests were run using the full MRC-Holland catalogue of Multiplex-Ligation Probe Amplification assays. Of all samples, 77% were postnatal samples, 15% products of conception (POC), and 8% amniotic samples. Of postnatal samples, the most common testing categories were multiple congenital anomalies (32%), disorders of sex development (17%), and Obstetrics/Gynecology (16%). Forty-three percent of postnatal samples were diagnostic, 11% were variants of uncertain significance (VUS), and 46% were normal with Trisomy 21 the most common diagnosis. Of POC samples, 10% were diagnostic, 34% revealed VUSs, and 55% were normal with Trisomy 18 the most common diagnosis. Of amniotic samples 17.5% were diagnostic, 3% revealed VUSs, and 79% were normal with Trisomy 18 the most common diagnosis. There is increasing demand for genetic testing in Ethiopia. Diagnostic genetic testing in SSA deserves increased attention as testing platforms become more affordable.

show abstract

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

Cited by 4 publications

References 0 publications

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

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

Interventions to improve early detection of childhood cancer in low‐ and middle‐income countries: A systematic review

The introduction of clinical genetic testing in Ethiopia: Experiences and lessons learned

Contact Info

Product

Resources

About