Improving Metastatic Breast Cancer Care in Kenya Using Information Technology

Background and context: In Africa, up to two thirds of breast cancer patients have been reported to present with an advanced stage of III or IV at diagnosis leading to a disproportionately higher mortality. In Kenya, breast cancer is the most common cancer in females in terms of diagnosis and mortality. Metastatic breast cancer (MBC) patients are an ignored part of the breast cancer community as they are marginalized in many of the breast cancer related initiatives. MBC suffer from clinical depression, anxiety and four out of five of these women do not receive any services, referral or guidance to help them with their emotional distress. Preferred evidence based methods of support desired by women with MBC, include online support. International resources are not always applicable to the local context thus making them unattractive for people from diverse cultures and background, such as those from Africa. Kenya has a high percentage of literate females and highest Internet usage in the area. This provides a unique opportunity in an otherwise limited resource country to reach out to a significant population of MBC patients. The patients voices are a valuable and trustworthy assessment of their actual needs. They have been used frequently in the area of cancer as a first step in designing needs-tailored interventions. We propose to develop a virtual online forum with the aim of providing patients with MBC, and their caregivers an interactive forum for psycho social support, addressing stigmas, seek relevant clinical advice, find links to the nearest healthcare facilities, download helpful information, participate in support group activities and receive links to other important helpful sites that are locally relevant. We also propose that such forum should also reflect the needs of our patients as described by themselves. Aim: Primary aim of this project is developing a virtual online interactive support forum where MBC patients and their caregivers can access information on social, psychological, spiritual, religious and clinical needs. The purpose is to be partly achieved by assessing the patient needs by needs assessment survey and to evaluate the impact of such intervention on patient knowledge and satisfaction with care. Strategy/Tactics: Web site development is the key component of the project. Patients would be asked to fill out the Supportive Care Needs Survey/The Knowledge Assessment Tool. The surveys will take place at four major cancer treatment hospitals in Kenya. Postlaunch promotion and awareness about Web site will be made and, usage data and knowledge tool to be used to assess the impact and acceptability. Web site updated regularly to address issues identified. Program/Policy process: Information gathered would be made part of policy on national cancer strategy, recommendations to factor in identified patient needs in policy. What was learned: Ongoing process.