DEC-12 “The Hardest Decision I Ever Had”: Parent Decision Making About Tnf-Alpha Inhibitor Treatment
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Résumé
Purpose: Parents’ treatment decisions in pediatric chronic disease are often complicated by tradeoffs between disease and treatment risks, as well as the difficulty of proxy decision making. The objective of this study was to describe the information and process parents use to make treatment decisions for their children with chronic conditions; using decisions about TNF-α inhibitor (TNFαi) treatment, which has risks of immunosuppression and malignancy, as a model.\nMethod: We conducted semi-structured interviews with parents of children with Crohn’s Disease (CD) (n = 14) or Juvenile Idiopathic Arthritis (JIA) (n = 20) who had experience deciding about TNFαi treatment. Participants had made a decision within the prior year, been referred to the study BECause of difficulty in decision making or were in the process of making the decision. Interview questions, developed based on existing pediatric decision-making literature and the Ottawa Decision Support Framework, were focused on information used to make decisions, factors that influenced decision making and the decision timeline. We used thematic analysis for all coding and analysis. Coding structure was developed through 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 compared between CD and JIA.\nResult: 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, and ongoing, stress and anxiety related to the decision. In both groups, parents sought information from multiple sources including health care providers, the internet and social contacts. They looked for information related to treatment effectiveness, side-effects and individuals’ experiences with such treatment. In CD, where the decision often occurred over weeks to months, information was most often used to help make the decision. In contrast, in JIA the decision was often made in a single clinic appointment and information was then used to confirm the parent’s choice.\nConclusion: Even after a decision has been made, some parents are left with persistent information needs, long-lasting concerns and worry related to TNFαi treatment for their child. Providing parents with structured support, including treatment-specific information, during TNFαi decision making may lead to improved decision quality, decreased psychosocial distress and, ultimately, improved outcomes for their children
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Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,001 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découle