Conceptual Framework for Quality Care among Clients with Sickle Cell Disease through Nurse-Led Information Desk

Sickle cell disease (SCD) is an inherited disease caused by an abnormal type of haemoglobin. It is one of the most common genetic blood disorders in the Gulf region, including Oman. The disease progresses through remissions and exacerbations and its intensity ranges from intense pain episodes to multi-system failure requiring admissions in the intensive care units (ICU). Many of these patients require frequent contact with the healthcare system and often find it difficult, or even impossible, to coordinate with all the required supportive services (physiotherapist, occupational therapist, dietician, etc) without assistance. Nurses are uniquely qualified to assume the responsibility of patient care coordination. The needs of SCD patients are diverse and comprises of pain management, transfusion & chelation therapy compliance, preventive of primary care issues and education. A Nurse-led information desk will serve as a useful vehicle in disseminating and modulating these issues. This store house of information aims at improving the Quality of Life among the SCD patients and also envisions at reducing the incidence of SCD in Oman. This paper conceptualizes the Nurse-led information and highlights the significance of such a structure in helping patients and their families manage the daily needs of living with a chronic disease. The conclusion emphasizes on the urgent establishment of this information desk to provide education and coordination services for the quantitative and qualitative improvement in the life-expectancy of patients with SCD in Oman. The empowering of the SCD patients and their communities will reflect in decreased re-hospitalizations and cost containment for the health care industry, which are the essence of quality care management.