Breast Cancer, Version 4.2026, NCCN Clinical Practice Guidelines In Oncology.
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Gradishar William J, Moran Meena S, Abraham Jame, Abramson Vandana, Aft Rebecca, Agnese Doreen, Allison Kimberly H, Anderson Bethany, Bailey Janet, Burstein Harold J, Chen Nan, Chew Helen, Dang Chau, Elias Anthony D, Giordano Sharon H, Goetz Matthew P, Jankowitz Rachel C, Javid Sara H, Leitch A Marilyn, Lyons Janice, McCloskey Susie, McShane Melissa, Patel Sameer A, Rosenberger Laura H, Rugo Hope S, Santa-Maria Cesar A, Schneider Bryan P, Smith Mary Lou, Soliman Hatem, Speers Corey, Telli Melinda L, Wei Mei, Wisinski Kari B, Yellala Amulya, Yeung Kay T, Young Jessica S, Schonfeld Ryan, Kumar Rashmi
Аннотация
DESIGN: Phenomenological qualitative study of lived experience.
METHODS: In-depth, timeline-assisted, semi-structured interviews were undertaken virtually with participants recruited via the Living with CAH patient support group. Participants, purposively selected until data saturation, were adults (≥18 years) with CAH and parents or partners of adults with CAH. Interviews were audio-recorded, transcribed verbatim, and analysed using framework analysis.
RESULTS: Twenty-three participants were interviewed (20 classic, 1 non-classic, and 2 mothers). Most participants (n = 19) were female. CAH has a profound physical, psychological, and psychosocial impact on individuals. The psychological well-being of women was compromised by trauma from childhood medical examinations and a lack of agency in treatment decisions. Poor self-esteem, shame, and negative body image impaired female social functioning. Female sexual dysfunction from genital malformation or surgery and psychosexual issues negatively impacted intimate relationships. Fertility and reproductive choices were a concern to both sexes. Complex family dynamics with dependent relationships were evident.
CONCLUSION: This study identified a breadth of factors impacting HRQoL in CAH - domains overlooked by an existing measure that predominantly focuses on physical symptoms. Further work is needed to develop a sensitive, comprehensive disease-specific HRQoL measure that reflects the lived experience of individuals with CAH to facilitate delivery of patient-centred care and improved patient outcomes.