Psychosocial aspects of LFS
In November 2015, our LFS team published an article in the Journal of Genetic Counseling (JoGC). Read the epub version of the article: "Easing the Burden: Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li-Fraumeni Syndrome."
This paper presents the findings from assessments of the social support and emotional status of the first 66 participants who attended the LFS clinic at the NIH Clinical Center. We saw patients with or without cancer, along with relatives and spouses. Most people did not indicate distress on a standardized measure. We found that reported friendships varied widely and were an important source of informational, tangible, emotional, and spiritual support. In some families, organized religion was a major source of coping. Confidantes tended to be best friends and/or spouses. Our results shed preliminary light on how some people in LFS families handle tremendous medical, social, and emotional challenges.
Physical Activity & Diet Pilot
In 2014, CGB launched a pilot study targeting Physical Activity and Diet (PAD) in LFS families. This is a first step towards evaluating the feasibility and practicality of collecting data of this kind from our study participants. The long-range goal of this effort is to determine whether there might be opportunities for modification of these important lifestyle variables toward reducing cancer risk and improving overall health and well-being in LFS families. A random sample of LFS study participants were invited to participate by providing information about their daily diet and physical activity using a web-based data collection tool.
LFS Family Interview Study
In 2012, CGB launched the Family Interview study as an extension of the psychosocial research conducted in the LFS study. The purpose of the family interviews is to explore and understand the ways in which members of families with LFS or LFL communicate with and support each other. A trained couples and family therapist conducts in-depth interviews with two or more family members during their visits to the Clinical Center. During the interviews, we explore the specific challenges that arise in navigating a wide range of individual and family issues that might be affected by the presence of LFS or LFL.