Summary of the experiences, knowledge, medical management, and family communication of monoallelic MUTYH carriers.

Germline genetic testing for inherited cancer risk is increasingly being performed with multigene panel testing with MUTYH often included on colorectal cancer- and polyposis-focused panels, as well as on broader pan-cancer panels. With up to 1%-2% of the general population being monoallelic MUTYH carriers, pathogenic/likely pathogenic (P/LP) variants in MUTYH are one of the most common findings on multigene cancer panels. However, little is known about patient experience and understanding of monoallelic MUTYH P/LP variants, nor whether such findings influence medical management recommendations and familial communication, which this study aims to better understand. Monoallelic P/LP MUTYH carriers were recruited from the Prospective Registry of Multiplex Testing (PROMPT) and completed a cross-sectional self-report survey on sociodemographic characteristics, medical and family history, experiences with MUTYH genetic testing, genetics and MUTYH knowledge, perceived cancer risk, and familial communication. Of 115 eligible PROMPT participants, 49 (43%) completed the survey who were primarily female (94%), white (96%), had a history of cancer (61%), and a median age of 51.4 years. Most participants (61%) reported satisfaction with how their healthcare provider managed their genetic test result and care, and 65% of survey participants reported their provider recommended colonoscopy based on their genetic test results. Participants' responses also reflected variable levels of knowledge regarding cancer risks and screening recommendations for MUTYH carriers. The majority (98%) of participants shared their genetic test results with at least some of their relatives; however, only 13% of eligible relatives reportedly underwent cascade testing. Taken together, this study provides needed insight into the overall experiences of monoallelic MUTYH carriers and highlights numerous areas for improvement in clinician education, communication, and management of these individuals.

Evaluation of a Peer-led Asthma Self-management Group Intervention for Urban Adolescents.

PURPOSE: This paper describes the acceptability and generalizability of an evidenced-based peer-led asthma self-management program. DESIGN AND METHODS: Adolescents with persistent asthma (n = 259, ages 12-17 years) from three urban cities participated in a one day camp led by either trained peer leaders (n = 35, ages 16-20 years; intervention group) or healthcare professionals (control group). Participants completed a camp evaluation form, and the peer leader quality survey. RESULTS: Overall program evaluation showed high acceptability with average score of 4.5 (±0.87) out of 5 and no treatment group differences were found. Campers highly rated peer leaders' qualification, particularly trustworthiness (98%), knowledge (97%), and sense of humor (95%). Participants from low income families (annual income < $30,000) reported higher satisfaction with their camp experience being enjoyable compared to their counterparts from higher income families (X2 = 4.23, p ≤ .04). CONCLUSIONS: This study supports the acceptability and generalizability of a peer-led asthma self-management program across different urban community locations, seasons and venues. PRACTICE IMPLICATIONS: Trained peers can be as effective as adult educators in teaching adolescents asthma self-management.