{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,27]],"date-time":"2026-03-27T01:13:08Z","timestamp":1774573988493,"version":"3.50.1"},"reference-count":43,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2013,3,1]],"date-time":"2013-03-01T00:00:00Z","timestamp":1362096000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J. pediatr. gastroenterol. nutr."],"published-print":{"date-parts":[[2013,3]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Objective:<\/jats:title><jats:p>The aim of the study was to describe parents' experiences and the information used when making decisions about tumor necrosis factor\u2010\u03b1 inhibitor (TNF\u03b1i) treatment.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods:<\/jats:title><jats:p>We interviewed parents of children with Crohn disease (CD) or juvenile idiopathic arthritis who had experience deciding about TNF\u03b1i 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results:<\/jats:title><jats:p>We interviewed 35 parents. For nearly all parents the decision about TNF\u03b1i 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions:<\/jats:title><jats:p>The decision\u2010making experience, and associated information seeking, leaves some parents with long\u2010lasting concerns and worry about TNF\u03b1i treatment. Providing parents with structured decision\u2010making support may lead to more effective and efficient decision making, decreased psychosocial distress, and, ultimately, improved outcomes for their children.<\/jats:p><\/jats:sec>","DOI":"10.1097\/mpg.0b013e31827496c3","type":"journal-article","created":{"date-parts":[[2012,11,17]],"date-time":"2012-11-17T08:16:28Z","timestamp":1353140188000},"page":"244-250","source":"Crossref","is-referenced-by-count":31,"title":["Parents' Information Needs in Tumor Necrosis Factor\u2010\u03b1 Inhibitor Treatment Decisions"],"prefix":"10.1002","volume":"56","author":[{"given":"Ellen A.","family":"Lipstein","sequence":"first","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daniel J.","family":"Lovell","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lee A.","family":"Denson","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David W.","family":"Moser","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shehzad A.","family":"Saeed","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cassandra M.","family":"Dodds","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria T.","family":"Britto","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2013,3]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cgh.2007.07.012"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20460"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2008-2569"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2006.00359.x"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1348\/135910704X14609"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2005.01.8390"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2007.023705"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-0486"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2003.tb00942.x"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.20903"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2004.13.19.16318"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2354.2009.01116.x"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2008.00496.x"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2009.00572.x"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.3748\/wjg.15.2067"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.27511"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1651-2227.2010.01938.x"},{"key":"e_1_2_8_19_1","first-page":"16","article-title":"Optimizing treatment with biologics","volume":"80","author":"Mader R","year":"2007","journal-title":"J Rheumatol Suppl"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.284.3.357"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.6996.42"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002820-200202000-00009"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.1996.00440120070006"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1367\/1539-4409(2001)001<0326:HMEIEA>2.0.CO;2"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2005.07.006"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732307305199"},{"key":"e_1_2_8_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2007.11.023"},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/0740-5472(94)90044-2"},{"key":"e_1_2_8_29_1","doi-asserted-by":"publisher","DOI":"10.1002\/9780470750841"},{"key":"e_1_2_8_30_1","unstructured":"FDA.Drug Safety Labeling Changes > Remicade (infliximab) IV Infusion.2009. 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