Providers and patients encounter challenges related to the management of Variants of Unknown Significance (VUS). A VUS introduces new counseling dilemmas for the understanding and psychosocial impact of uncertain genetic test results. This descriptive study uses Mishel's theory of uncertainty in illness to explore the experience of individuals who have received a VUS as part of the genetic testing process. Semi-structured interviews were conducted with 27 adult individuals who received a VUS for Lynch syndrome mismatch repair genes between 2002 and 2013. The interviews were transcribed and analyzed. Most individuals recalled their result and perceived various types of uncertainty associated with their VUS. Half of the participants appraised their variant as a danger and implemented coping strategies to reduce the threat of developing cancer. Mobilizing strategies to reduce their risk included vigilant cancer surveillance, information seeking and notifying relatives. The majority of participants were unaware of the possibility of a VUS before receiving their result and expected reclassification over time. These results provide insight into the ways healthcare providers can support patients who receive VUS for Lynch syndrome. Findings also provide direction for future work that can further explicate the impact of receiving a VUS.

The transition process from pediatric to adult health care for adolescents with chronic diseases is always challenging and can be even more so for adolescents with HIV disease. The purpose of this study was to describe characteristics and current practices surrounding the transition of adolescents from the clinics of the Adolescent Trials Network for HIV/AIDS Interventions to adult medical care. This report focuses on the processes of transition, perceived barriers and facilitators, and anecdotal reports of successes and failures. Practice models used to assist adolescents during transition to adult medical care are described. Interviews were conducted with 19 key informants from 14 Adolescent Trials Network clinics. Findings revealed no consistent definition of “successful” transition, little consensus among the sites regarding specific elements of a transition program, and a lack of mechanisms to assess outcomes. Sites that viewed transition as a process rather than an event consistently described more structured program elements.

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We aimed to investigate the prevalence of ulcerative sexually transmissible diseases (STDs) and hepatitis in crack users. We interviewed 435 crack users on site in crack houses in Houston, Texas and took blood for laboratory analysis. There was evidence of syphilis infection in 13%, herpes simplex virus-2 (HSV-2) in 61%, HIV in 12%, hepatitis B in 52%, and hepatitis C in 41% of cases. On DSM-III-R criteria, 12% were crack abusers and 84% crack dependent: over half reported previous treatment. Forty per cent reported also injecting. Sexual behaviour indicated a mean of 2.4 partners in the past month for men, 3.7 for women. Sexual behaviour was largely vaginal, although women also reported more than twice the level of oral sex of men. Significant multivariate predictors for HIV and hepatitis B and C were previous reported STD and injecting drug use (including sharing needles), while female gender for syphilis and HSV-2, and additionally condom use for HSV-2, were significant risks. These data confirm high rates of STDs in a crack house population as inferred from previous clinic-based and community studies, and the link between STDs, injecting and HIV. The high rates of STDs found should lead to considering STDs and substance abuse to be dual diagnoses in crack users and the integration of STD diagnosis and treatment into crack outreach and treatment programmes.

Persistent, subjective symptoms of unknown etiology following treatment for Lyme disease have been termed post- treatment Lyme disease syndrome or chronic Lyme disease (PTLDS/CLD). The objective of this study was to give primacy to the patient experience of this medically contested condition by eliciting patient illness narratives and identifying emergent issues through semistructured interviews conducted among 29 participants. We used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a "new normal" characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways, and (c) pervasive medical uncertainty regarding PTLDS/CLD promotes an increased sense of personal responsibility for care. Similar to other contested or medically unexplained syndromes, our findings suggest that the social sequelae of PTLDS/CLD can be equally protracted as the physical effects of this illness.