Parents' information needs in tumor necrosis factor-α inhibitor treatment decisions.
OBJECTIVE
The aim of the study was to describe parents' experiences and the information used when making decisions about tumor necrosis factor-α inhibitor (TNFαi) treatment.


METHODS
We interviewed parents of children with Crohn disease (CD) or juvenile idiopathic arthritis who had experience deciding about TNFαi treatment. Interview questions focused on information used to make decisions and factors that influenced decision making. We used thematic analysis for all coding and analysis. Coding structure was developed by a multidisciplinary team review of the initial interviews. Two coders then coded the remaining interviews, compared coding, and resolved disagreements through discussion. Data were analyzed by thematic grouping and then compared between diseases.


RESULTS
We interviewed 35 parents. For nearly all parents the decision about TNFαi treatment was the most challenging medical decision they had made; however, parents of children with CD experienced more stress and anxiety than did other parents. Both groups of parents sought information from multiple sources including health care providers, the Internet, and social contacts. They looked for information related to treatment effectiveness, adverse effects, and other individuals' treatment experiences. In CD, information was used to help make the decision, whereas in juvenile idiopathic arthritis it was used to confirm the decision.


CONCLUSIONS
The decision-making experience, and associated information seeking, leaves some parents with long-lasting concerns and worry about TNFαi treatment. Providing parents with structured decision-making support may lead to more effective and efficient decision making, decreased psychosocial distress, and, ultimately, improved outcomes for their children.
Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA. ellen.lipstein@cchmc.org
Ellen A
EA
Lipstein
Daniel J
DJ
Lovell
Lee A
LA
Denson
David W
DW
Moser
Shehzad A
SA
Saeed
Cassandra M
CM
Dodds
Maria T
MT
Britto
D000293:Adolescent; D000894:Anti-Inflammatory Agents, Non-Steroidal / Q000009:adverse effects / Q000627:therapeutic use; D018501:Antirheumatic Agents / Q000009:adverse effects / Q000627:therapeutic use; D001171:Arthritis, Juvenile / Q000188:drug therapy*; D002648:Child; D002675:Child, Preschool; D003424:Crohn Disease / Q000188:drug therapy*; D003657:Decision Making; D005260:Female; D006776:Hospitals, Pediatric; D006801:Humans; D007166:Immunosuppressive Agents / Q000009:adverse effects / Q000627:therapeutic use; D057226:Information Seeking Behavior; D008297:Male; D020380:Needs Assessment; D009820:Ohio; D010290:Parents / Q000193:education*; D010353:Patient Education as Topic; D010358:Patient Participation; D014409:Tumor Necrosis Factor-alpha / Q000037:antagonists & inhibitors*
D000894:Anti-Inflammatory Agents, Non-Steroidal; D018501:Antirheumatic Agents; D007166:Immunosuppressive Agents; D014409:Tumor Necrosis Factor-alpha