Follow-Up of Young Adults With ADHD in the MTA: Design and Methods for Qualitative Interviews.

OBJECTIVE: Qualitative interviews with 183 young adults (YA) in the follow-up of the Multimodal Treatment Study of Children With and Without ADHD (MTA) provide rich information on beliefs and expectations regarding ADHD, life's turning points, medication use, and substance use (SU). METHOD: Participants from four MTA sites were sampled to include those with persistent and atypically high SU, and a local normative comparison group (LNCG). Respondents were encouraged to "tell their story" about their lives, using a semistructured conversational interview format. RESULTS: Interviews were reliably coded for interview topics. ADHD youth more often desisted from SU because of seeing others going down wrong paths due to SU. Narratives revealed very diverse accounts and explanations for SU-ADHD influences. CONCLUSION: Qualitative methods captured the perspectives of YAs regarding using substances. This information is essential for improving resilience models in drug prevention and treatment programs and for treatment development for this at-risk population.

The Qualitative Interview Study of Persistent and Nonpersistent Substance Use in the MTA: Sample Characteristics, Frequent Use, and Reasons for Use.

OBJECTIVE: To evaluate participants' perceptions about frequent use and reasons for substance use (SU) in the qualitative interview study, an add-on to the multimodal treatment study of ADHD (MTA). METHOD: Using the longitudinal MTA database, 39 ADHD cases and 19 peers with Persistent SU, and 86 ADHD cases and 39 peers without Persistent SU were identified and recruited. In adulthood, an open-ended interview was administered, and SU excerpts were indexed and classified to create subtopics (frequent use and reasons for use of alcohol, marijuana, and other drugs). RESULTS: For marijuana, the Persistent compared with Nonpersistent SU group had a significantly higher percentage of participants describing frequent use and giving reasons for use, and the ADHD group compared with the group of peers had a significantly higher percentage giving "stability" as a reason for use. CONCLUSION: Motivations for persistent marijuana use may differ for adults with and without a history of ADHD.

Newborn screening and cascade testing for FMR1 mutations.

We describe an ongoing pilot project in which newborn screening (NBS) for FMR1 mutations and subsequent cascade testing are performed by the MIND Institute at the University of California, Davis Medical Center (UCDMC). To date, out of 3,042 newborns initially screened, 44 extended family members have been screened by cascade testing of extended family members once a newborn is identified. Fourteen newborns (7 males and 7 females) and 27 extended family members (5 males and 22 females) have been identified with FMR1 mutations. Three family histories are discussed in detail, each demonstrating some benefits and risks of NBS and cascade testing for FMR1 mutations in extended family members. While we acknowledge inherent risks, we propose that with genetic counseling, clinical follow-up of identified individuals and cascade testing, NBS has significant benefits. Treatment for individuals in the extended family who would otherwise not have received treatment can be beneficial. In addition, knowledge of carrier status can lead to lifestyle changes and prophylactic interventions that are likely to reduce the risk of late onset neurological or psychiatric problems in carriers. Also with identification of carrier family members through NBS, reproductive choices become available to those who would not have known that they were at risk to have offspring with fragile X syndrome.