Retinoblastoma referral pattern in Kenya.

PURPOSE: Kenya is a large country with a widely dispersed population. As retinoblastoma requires specialized treatment, we determined the referral pattern for patients with retinoblastoma in Kenya to facilitate the formulation of a national policy.
MATERIALS AND METHODS: A retrospective study was performed for retinoblastoma patients who presented from January 1, 2006 to December 31, 2007. Data were collected on the referral process from presenting health facility to the hospital where patient was treated. Data were also collected on the time interval when the first symptoms were noticed to the time of presentation at a health facility (lag time). For cases that could be traced to a referral hospital, the time delay due to referral (referral lag time) was recorded.
RESULTS: There were 206 patients diagnosed with retinoblastoma in 51 Kenyan and 2 foreign healthcare facilities, and they received final treatment at a Kenyan hospital. Mean lag time was 6.8 months (±6.45). Of all patients, 18% (38/206) were treated at the hospital where they first presented and 82% (168/206) were referred elsewhere. Of those referred, 35% (58/168) were lost to follow-up. The mean referral lag time was 1.7 months (±2.5).
CONCLUSIONS: A significant proportion of cases presented late, and either delayed seeking further treatment or were lost after initial referral. We recommend the implementation of a national strategy that emphasizes early detection, documentation and follow up of retinoblastoma patients.