Preventive Services Received by Adolescents With Cystic Fibrosis and Sickle Cell Disease

Perspectives on substance use among youth with chronic medical conditions and implications for clinical guidance and prevention: A qualitative study

“…Participants reported that discussions about substance use are not occurring during subspecialty visits or feel perfunctory and unsatisfying. This finding mirrors the low rates of alcohol screening and counseling among pediatric subspecialists found in the most recently published survey reports [69,70].…”

Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care

“…Importantly, patients identified that preventive care issues may not be regularly or effectively addressed, a finding that is consistent with other research on adolescents with chronic illness, [13][14][15][16]18 as well as adolescents receiving routine primary care. In a large study of over 36,000 Minnesota adolescents in grades 7-12, Suris et al did not find any differences between adolescents with and without a chronic health condition for sexual activity.…”

“…Britto et al found no difference in level of counseling, regardless of whether the main physician was a primary-care physician or a pulmonologist. 13 In our study, we found that participants desired to speak alone with their physician at 13-16 years of age, and desired more counseling on health risks; in contrast, a study of South African youth with CF did not find that time alone or counseling was valued. 25 To our knowledge, the literature on preventive issues for adults with CF has not identified how these issues are addressed in the adult population, and has not evaluated the services that adults receive in this regard.…”

Sexual and Reproductive Health Care Experiences and Perceptions of Women with Congenital Heart Disease

“…One analysis found that age of sexual debut for women with CHD was later when compared with peers, and fewer adolescents with CHD were sexually active when compared with age-matched peers [22]. Similar studies of women with other pediatric-onset chronic disease, however, demonstrate sexual behaviors in line with the general United States population [23]. Participants in our study expressed a clear desire for early discussions regarding SRH.…”