Parents Information Needs in Tumor Necrosis Factor- Inhibitor Treatment Decisions

Lipstein, Ellen A.; Lovell, Daniel J.; Denson, Lee A.; Moser, David W.; Saeed, Shehzad A.; Dodds, Cassandra M.; Britto, Maria T.

Journal of Pediatric Gastroenterology & Nutrition:
doi: 10.1097/MPG.0b013e31827496c3
Original Articles: Gastroenterology

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.

Author Information

Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

Address correspondence and reprint requests to Ellen A. Lipstein, MD, MPH, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave, MLC 7027; Cincinnati, OH 45229 (e-mail:

Received 21 December, 2011

Accepted 10 May, 2012

D.J.L. has served as a consultant for study trial design or as principal investigator for trials with multiple manufacturers of biologics, including TNF-[alpha] inhibitors (Centocor Inc, Wyeth Pharmaceuticals, Bristol-Myers Squibb, Regeneron, Abbott, Amgen, Hoffman-La Roche, UBS, Novartis, Xoma Inc); he is also on the speakers’ bureau for Genentech. The other authors report no conflicts of interest.

Copyright 2013 by ESPGHAN and NASPGHAN