Educational needs of patients and caregivers living with sickle cell disease results in development of web-based patient decision aid.

AIMS

We performed an assessment to understand perceived decisional needs among those living with sickle cell disease. Additionally, we desired understanding of their preferred methods and quality of learning and sought guidance in development of a web-based patient decision aid.

DESIGN

The purpose of this qualitative study was to determine ways patients and caregivers receive education about sickle cell disease and available therapies. We sought to understand preferences for education, quality of current knowledge and information they would like to obtain.

METHODS

Recruitment for the initial needs assessment occurred between October 2013 -April 2014. Further recruitment for clarification of internet-based searches occurred between January 2015 -September 2016. We conducted a total of 201 semi-structured qualitative interviews with patients and caregivers.

RESULTS

Six themes emerged: healthcare provider education is good but does not meet all the learning needs of the patient/caregiver; patients/caregivers feel a strong desire to seek information about treatment options on their own; adult patients and parents diverged in their core objectives in seeking information: quality of life (QOL) was the major outcome of interest in considering potential treatment options; experience of peers is preferred source for learning about treatment options; and educational needs may be supplemented with a web-based interactive educational tool.

CONCLUSION

Patients with sickle cell disease and their caregivers are motivated by a desire to improve QOL in seeking treatment options and use many methods to seek education to supplement what they learn from their healthcare providers and may benefit from the use of a web-based decision aid. Impact Educational needs of patients/caregivers with sickle cell disease were identified and provide the basis to inform the design of educational strategies for them. Nurses and others can assist with learning needs by sharing the website and answering questions that arise.