Featured Review: Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications

Positive effects of educational interventions on improving patient knowledge of sickle cell disease and reducing depression

Positive effects of educational interventions on improving patient knowledge of sickle cell disease and reducing depression

Sickle cell disease is a lifelong, inherited disorder which can cause a number of complications throughout an individual's life. It may cause a huge burden on both the patient and their family, including frequent visits to healthcare facilities. The illness causes not just physical complications such as painful crises and strokes, but may have many other effects such as depression, poor quality of life, coping issues, and poor family relationships. When people with a chronic illness have better understanding about their illness, they manage their illness better and can improve their quality of life.

A team of Cochrane authors based in Barbados and Jamaica, supported by Cochrane Caribbean,  worked with Cochrane Cystic Fibrosis and Genetic Disorders to determine if any educational interventions have helped people with sickle cell disease and their caregivers to improve their understanding of the disease, recognize its complications, improve their adherence to treatment, affect how they utilize health care, and improve other social and psychological problems that they might face. Their review includes 12 trials involving a total of 563 people with the disease, aged 6-35 years of age.

Educational programs and other interventions resulted in improvements in both patients’ and their caregivers’ knowledge or understanding of sickle cell disease, and a decrease in the patients’ levels of depression. Effects on patients' knowledge were maintained for longer than for caregivers. The interventions studied showed no effect on patients' utilization of health services, relationships between families, caregiver or patient skills, coping, or health-related quality of life of the patient. No comparative data were reported for patients or caregivers (or both) recognizing signs and symptoms leading to self-management. No trials assessed adherence to treatment.

“This review identifies important positive effects of educational interventions on improving patients’ knowledge of their sickle cell disease and reducing their depression. Improvements in patients' knowledge were maintained for longer than for caregivers. The effect on knowledge was significant but small, and whether it offers any clinical benefit is uncertain,” says Dr. Monika R Asnani (an author with Cochrane Caribbean) of the Sickle Cell Unit at the Caribbean Institute for Health Research, University of the West Indies and co-lead author of the Cochrane Review. “Significant factors limiting these effects could be trials recruiting low numbers of participants and there was much variation between studies. To better study effects on outcomes, further controlled trials are needed with rigorous attention given to improving recruitment and retention and to decrease bias.”

Read the full Cochrane Review

Visit the Cochrane Cystic Fibrosis and Genetic Disorders Group website

Visit  the Cochrane Caribbean website

Monday, October 17, 2016
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