Improving Patient Communication About SUDEP
キーワード
概要
説明
Specifically, the investigators propose the following:
Aim 1: Add a "SUDEP module" to CHICA to identify children at increased risk of SUDEP, provide patient education materials that the clinician can share with the families, and recommend timelier follow-up with a child neurologist. The SUDEP module will be added to the existing installation of CHICA in the Eskenazi Health System in Indianapolis, IN so that SUDEP risk screening and advice are generated automatically in the setting of routine primary care in the 5 Eskenazi clinics.
Aim 2: Interview families of patients with epilepsy to determine if their pediatricians shared the SUDEP information and/or referred them to their neurologist. Families whose children are at risk for SUDEP will be identified through CHICA. The investigators will utilize the Pediatric Practice-based Research Network (PResNet) to follow-up these families by phone after their visits with the pediatrician. PResNet will determine if SUDEP was discussed, if a handout was provided, and if SUDEP has been discussed previously by their pediatrician or neurologist.
Aim 3: The investigators will assess physician and staff satisfaction regarding the SUDEP module of CHICA. Each year, PResNet will conduct a satisfaction survey among the clinic physicians and staff that use CHICA. The survey consists of general questions about CHICA that are asked every year and module-specific questions about new functionality that has been added.
日付
| 最終確認済み: | 09/30/2018 |
| 最初に提出された: | 04/10/2018 |
| 提出された推定登録数: | 04/10/2018 |
| 最初の投稿: | 04/18/2018 |
| 最終更新が送信されました: | 10/30/2018 |
| 最終更新日: | 11/01/2018 |
| 実際の研究開始日: | 06/13/2018 |
| 一次完了予定日: | 01/31/2019 |
| 研究完了予定日: | 01/31/2019 |
状態または病気
介入/治療
Behavioral: Post-intervention
段階
アームグループ
| 腕 | 介入/治療 |
|---|---|
| No Intervention: Pre-intervention Seizure patients receive usual care. | |
| Experimental: Post-intervention Physicians provide care enhanced by computer based clinical decision support about SUDEP. | Behavioral: Post-intervention CHICA reminds physicians to counsel patients/families about the risk of SUDEP. |
適格基準
| 研究に適格な性別 | All |
| 健康なボランティアを受け入れる | はい |
| 基準 | Inclusion Criteria: Parent or Guardian of a child seen at one of five clinics in the Eskenazi health care system for which the child has had at least 2 lifetime motor seizures. Exclusion Criteria: Inability of the subject to understand the survey |
結果
主な結果の測定
1. Parent recall of SUDEP counseling [within 2 weeks of a clinical encounter]
二次的な結果の測定
1. Knowledge and comfort in taking care of child's epilepsy [within 2 weeks of a clinical encounter]
