A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

作者：La Pean Alison^*; Collins Jenelle L; Christopher Stephanie A; Eskra Kerry L; Roedl Sara J; Tluczek Audrey; Farrell Michael H

来源：Genetics in Medicine, 2012, 14(2): 207-214.

DOI：10.1038/GIM.0b013e31822dd7b8

• cystic fibrosis carrier
• follow-up counseling
• newborn screening
• provider-patient communication
• sickle cell trait

Purpose: The purpose of this qualitative analysis was to assess parental acceptability of large-scale, telephone follow-up regarding their infants%26apos; newborn screening (NBS) results, indicating carrier status for sickle cell hemoglobinopathy (SCH) and cystic fibrosis (CF). %26lt;br%26gt;Methods: Analysis of 195 interview transcripts focused on parents%26apos; responses to two open-ended questions: %26quot;What was your reaction to being called by me?%26quot; and %26quot;What do you think of the state NBS program having follow-up people calling parents like you?%26quot; Responses were coded using conventional content analysis procedures, and nonparametric tests were performed to analyze quantitative data. %26lt;br%26gt;Results: Most parents reported favorable opinions about the follow-up. Favorable opinions were associated with several emotional reactions to receiving follow-up (P%26lt;0.001) and three reasons why parents found the interview beneficial (P%26lt;0.05): it provided information, clarified NBS results, and answered questions. Seventeen parents of SCH carriers reportedly had not been told their infant%26apos;s NBS results and received them for the first time during the follow-up interview %26lt;br%26gt;Conclusion: Parents of CF and SCH carrier infants had favorable opinions and identified specific benefits to receiving follow-up contact. This analysis demonstrates an information deficit among carrier parents and illustrates the importance of NBS follow-up and need for comprehensive communication and counseling. Genet Med 2012:14(2):207-214

• 出版日期2012-2