Family House at the Uganda Cancer Institute
As the national cancer referral center, the Uganda Cancer Institute (UCI) serves Ugandan cancer patients. In addition, cancer patients from the neighboring countries, including Kenya, Tanzania, Rwanda, Burundi, Somalia, South Sudan, and the Democratic Republic of the Congo, also receive care at the UCI. Its mission is to provide state-of-the-art cancer care and prevention by advancing knowledge and fostering the use of research as a resource in training and professional development.
The Family House will be a temporary housing facility for children with cancer who reside far from the UCI (e.g. northern Uganda, neighboring countries, etc.) and have no alternative accommodations in or near Kampala. The facility will be located geographically close to the UCI and serve as an essential supportive facility during treatment. Patients and their families may travel several hours or days to reach the UCI.
For pediatric patients at the UCI, three major factors contribute to treatment failure: 1) high rate of treatment abandonment, 2) high rate of death (from secondary infections, or treatment toxicity, disease progression) and 3) late presentation to the UCI with advanced disease (that can only be palliated). The Family House can help improve treatment outcomes by addressing some of these factors.
During cancer treatment, pediatric patients have frequent follow-up appointments in accordance with their treatment schedules, but do not necessarily have to be in-patients. For children who travel long distances for these appointments, there are financial implications as the majority are from peasant families and cannot afford frequent travel or accommodations. There are also physical implications, as sick children often cannot withstand the frequent trips that may take several hours or days. These factors have contributed to the high treatment abandonment rates. By providing accommodation near the UCI, the Family House will help these children complete their treatments by mitigating transport or accommodation issues.
Further, upon discharge, the patients from northern Uganda or neighboring countries typically stay at the ward, and over flow to the verandas/corridors or lawns of the campus where unsanitary conditions increase their risk of infection (e.g. malaria, pneumonia, sepsis), especially given their immunocompromised status. This creates a vicious cycle: discharged patients remain in unsanitary conditions where they acquire inter-current infections and are then readmitted to the ward. This is a particular challenge for HIV positive patients with cancer, whose immune systems are already compromised. Thus, the pediatric ward is overcrowded with an average of 50 in-patients occupying a 30-bed ward. The UCI has limited resources to manage pediatric cancer patients, in which overcrowding further stretches these resource. Nearly half the inpatient children could be moved to outpatient status, if there was nearby accommodation. With the Family House, the inpatient population could be reduced and resources could be focused on children that need critical inpatient care, potentially leading to greater efficiency of the UCI. Also, improved sanitary conditions would likely further reduce the risk of infections. Moreover, as the parent institution, the UCI will have nurses and coordinating staff on-site at the Family House to enable prompt/appropriate intervention in case of medical complications, infectious or otherwise, in the children. These features would improve treatment outcome of children with cancer at the UCI and promote comprehensive care on the cancer treatment continuum.