Self-surveillance by adolescents and young adults transitioning to self-management of a chronic genetic disorder.
Adolescents and young adults with Marfan syndrome (MFS) use information from self-surveillance to manage their disorder. Thirty-seven male and female adolescents with MFS aged 14 to 21 years were interviewed. They identified 58 distinct self-surveillance behaviors that fell into four categories and multiple subcategories (SCs): tracking phenotype (SCs: physical appearance, physical fitness, medical problems, and other observations); tracking medical care (SCs: medical evaluations and treatments, and pharmacotherapy); tracking behavior (SCs: personal choices and social relations); and tracking emotions (SCs: positive emotional impact and negative emotional impact). The frequency and range of self-monitoring increased with the age of the child. On average, a child of 14 self-monitored from 1 to 3 times per day, whereas a person aged 21 might self-monitor many more times per day. The patient-parent-physician relationship is the context for teaching adolescents and young adults self-surveillance skills. Self-surveillance by patients is first-line symptom assessment and an adjunct to medical monitoring.
University of Pennsylvania, Philadelphia, 19104, USA. giarelli@nursing.upenn.edu
Ellen
E
Giarelli
Barbara A
BA
Bernhardt
Reed E
RE
Pyeritz
D000293:Adolescent; D000328:Adult; D015897:Comorbidity; D004644:Emotions; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008382:Marfan Syndrome / Q000175:diagnosis* / Q000523:psychology*; D010641:Phenotype; D010817:Physician-Patient Relations; D012648:Self Care / Q000379:methods*; D012737:Sex Factors