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Shared decision making in the management of children with newly diagnosed immune thrombocytopenia
Carolyn E Beck1, Katherine M Boydell, Elaine Stasiulis
1*Division of Pediatric Medicine and the Pediatric Outcomes Research Team †Department of Pediatrics ¶Division of Hematology/Oncology, Hospital for Sick Children, University of Toronto ‡Department of Psychiatry and Child Health Evaluative Sciences §University of Toronto, Dalla Lana School of Public Health ∥Institute of Medical Science, University of Toronto, Toronto **Department of Pediatrics, Division of Hematology/Oncology, McMaster University, Hamilton, Canada #Department of Community and Family Medicine, Dartmouth Medical School, New Hampshire, UK.
Insights
Pediatric immune thrombocytopenia (ITP) treatment decisions often lack shared decision-making (SDM). Children and parents experience anxiety, while healthcare professionals make assumptions, hindering patient-centered care for newly diagnosed ITP.
Area of Science:
- Pediatric Hematology
- Clinical Psychology
- Health Services Research
Background:
- Immune thrombocytopenia (ITP) is a common autoimmune bleeding disorder in children.
- Treatment decisions for pediatric ITP can be complex, impacting patient and family experiences.
- Shared decision-making (SDM) is a key component of patient-centered care.
Purpose of the Study:
- To examine the treatment decision-making process for children newly diagnosed with ITP.
- To understand the experiences of children, parents, and healthcare professionals regarding decision support and making in pediatric ITP.
- To identify barriers and facilitators to implementing SDM in pediatric ITP management.
Main Methods:
- Qualitative study utilizing focus groups with children diagnosed with ITP, their parents, and healthcare professionals.
- Thematic analysis was employed to examine participant experiences with decision support and making.
- Data collection focused on understanding emotions, information needs, and treatment choice experiences.
Main Results:
- Children reported anxiety, fear, confusion, and a need to understand information, with treatment choice experiences varying by age.
- Parents also experienced significant anxiety and felt guided towards intravenous immune globulin (IVIG) for initial treatment.
- Healthcare professionals' comfort levels, assumptions about parental involvement, and information provision methods influenced SDM, revealing a gap between current practice and ideal SDM.
Conclusions:
- Families of children with newly diagnosed ITP are not currently experiencing SDM at the center studied.
- Findings highlight the need for improved communication and support to facilitate SDM.
- Implementing SDM is recommended to enhance patient-centered care for pediatric ITP management.
Abstract:
This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants' experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of "anxiety, fear, and confusion"; the need to "understand information"; and "treatment choice," the experience of which was age dependent. For parents, "anxiety, fear, and confusion" was a dominant theme; "treatment choice" revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, "comfort level" highlighted factors contributing to professionals' comfort with offering options; "assumptions" were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; "providing information" was informative regarding modes of facilitating SDM; and "treatment choice" revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.
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