DECISION MAKING IN THE MANAGEMENT OF CHILDREN HOSPITALIZED WITH ACUTE IMMUNE THROMBOCYTOPENIC PURPURA: UNDERSTANDING CHILD, PARENT, AND HEALTH CARE PROFESSIONAL PERSPECTIVES

Background: Hospitalists may consider that the treatment options for typical, acute immune thrombocytopenic purpura (ITP) (IVIG, steroids, anti-D, and observation) are preference-sensitive. That is, there is no clearly superior option, and families’ values may be considered in making an informed choice. Understanding the experience of acute ITP is essential for informing the development of a patients’ decision aid that will help families actively participate in the decision making process.   

Purpose: To examine decision making in acute ITP, as perceived by children with ITP, their parents, and health care professionals, with a goal toward development of a  decision aid.   

Method: We conducted six focus groups comprising two groups each of children (N=7), parents (N=16), and professionals (N=10), recruited from a large urban children’s teaching hospital. Thematic analysis was employed whereby team members examined transcripts and developed a codebook, allowing for systematic coding of the data. Rigor was assured by multiple investigators’ involvement in each stage of the process. The NVivo 8 software package was used to assist in data management.   

Result: Findings revealed the complexity of decision making in the management of children with acute ITP. All groups experienced the recommendation of IVIG as first line therapy. Professionals recognized the discrepancy between their practice of directed recommendation and that of option presentation and parental involvement, acknowledged as ideal. Influences on their decision making included: making the “easiest” decision (IVIG), institutional culture, and personal experience and comfort. Parents felt that the method of treatment decision to which they were exposed reflected its perceived urgent nature. Children articulated their desire to be more fully informed about the diagnosis of ITP and treatment options.   

Conclusion: Children, parents, and professionals endorse the importance of shared decision making. There is a need for enhanced communication and a patients’ decision aid to objectively help families understand the treatment options and make informed value-based choices.