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.
Betz, C.L. ( 2004). Transition of adolescents with special health care needs: Review and analysis of the literature. Issues in Comprehensive Pediatric Nursing, 27, 179-241.
Bridges, A.B., Faed, M., Boxer, M., Gray, J.R., Bundy, C., & Murray, A. ( 1992). Marfan syndrome in a large family: Responses of family members to a screening program. Journal of Medical Genetics , 29, 81-85.
4.
Callery, P., Milnes, L., Verduyn, C., & Couriel, J.Q. ( 2002). Qualitative study of young people’s and parents’ beliefs about childhood asthma. British Journal of General Practice, 53, 185-190.
5.
Carver, C.S., & Scheier, M.F. ( 2001). On the self-regulation of behavior. New York: Cambridge University Press.
6.
Christian, B.J., D’Auria, J.P., & Fox, L.C. ( 1999). Gaining freedom: Self-responsibility in adolescents with diabetes. Pediatric Nursing, 25, 255-260.
7.
Duval, S., & Wicklund, R.A. (1972). A theory of objective self-awareness . New York: Academic Press.
8.
Feeny, D., Juniper, E.F., Ferrie, P.J., Griffith, L.E., & Gyatt, G.H. ( 1998). Why not just ask the kids? Health-related quality of life in children with asthma. In D. Drotar (Ed.), Measuring health related quality of life in children and adolescents (pp. 171-185). Mahwah, NJ: Lawrence Erlbaum.
9.
Fenigstein, A., Scheier, M.F., & Buss, A.H. ( 1975). Public and private self-consciousness: Assessment and theory. Journal of Consulting and Clinical Psychology, 43, 522-527.
10.
Forero, R., Bauman, A., Young, L., Booth, M., & Nutbeam, D. ( 1996). Asthma, health behaviors, social adjustment, and psychosomatic symptoms in adolescence. Journal of Asthma, 33, 157-164.
11.
Fritz, G.K., & Wamboldt, M.Z. (1998). Pediatric asthma: Psychosomatic interactions and symptom perception. In H. Kostes & A. Harver (Eds.), Self-management of asthma (pp. 195-230). New York: Marcel Dekker.
12.
Giarelli, E. ( 2006). Self-surveillance for genetic predisposition to cancer: Behaviors and emotions. Oncology Nursing Forum, 33, 221-231.
13.
Giarelli, E., Bernhardt, B., Mack, R., & Pyeritz, R.E. ( 2008). Adolescents’ transition to self-management of a chronic genetic disorder. Qualitative Health Research, 18, 441-457.
14.
Gibbons, F.X., Smith, T.W., Ingram, R.E., Pearce, K., & Brehm, S.S. ( 1985). Self-awareness and self-confrontation: Effects of self-focused attention on members of a clinical population. Journal of Personality and Social Psychology, 48, 662-675.
15.
Gray, V.R. ( 1996). Family self-care. In P. J. Bomar (Ed.), Nurses and family health promotion (2nd ed., pp. 83-93). Philadelphia: W. B. Saunders.
16.
Gray, W.M. ( 1990). Formal operational thought. In W. F. Overton (Ed.), Reasoning, necessity, and logic: Developmental perspectives (pp. 227-253). Hillsdale, NJ: Erlbaum.
17.
Green, J., & Yedidia, M.J. ( 2005). The take care to learn evaluation collaborative. Journal of Health Care for the Poor and Underserved, 16, 808-824.
18.
Groenink, M., Lohuis, T.A.J., Tisjssen, J.G.P., Naeff, M.S.J., Hennekam, R.C.M., van der Wall, E.E., et al. (1999). Survival and complication free survival in Marfan syndrome: Implications of current guidelines. Heart , 82, 499-504.
19.
Hofman, K.J., Bernhardt, B.A., & Pyeritz, R.E. ( 1988). Marfan syndrome: Neuropsychological aspects. American Journal of Medical Genetics, 31, 331-338.
20.
Hull, J.G., Levenson, R.W., Young, R.D., & Sher, K.J. ( 1983). Self awareness-reducing effects of alcohol consumption . Journal of Personality and Social Psychology, 44, 461-473.
21.
Ingram, R.E. ( 1990). Self-focused attention in clinical disorders: Review and conceptual model. Psychological Bulletin, 107, 156-176.
22.
Merlijn, V.P., Hunfeld, J.A., van der Wouden, J.C., Hazebroek-Kampschreur, A.A., van Suijlekom-Smit, L.W., Koes, B.W., et al. (2005). A cognitive-behavioural program for adolescents with chronic pain: A pilot study. Patient Education and Counseling , 59, 126-134.
23.
Muuss, R.E. ( 1996). Harry Stack Sullivan’s interpersonal theory of adolescent development. Theories of adolescence (pp. 84-104). New York: McGraw-Hill.
24.
Nolan, T., Desmond, K., & Herlich, R. ( 1986). Knowledge of cystic fibrosis in patients and their parents . Pediatrics, 77, 229-235.
25.
Olsen, L.M., Radecki, L., Frintner, M.P., Wiess, K.B., Korfmacher, J., & Siegel, R.M. ( 2007). At what age can children report dependably on their asthma health status?Pediatrics, 119(1), e93-e102.
26.
Peters, K.F., Horne, R., Kong, F., Francomano, C.A., & Biesecker, B.B. (2001). Living with Marfan syndrome II: Medication adherence and physical activity modification. Clinical Genetics, 60, 283-292.
27.
Pyeritz, R.E. ( 2007). Marfan syndrome and related disorders. In D. L. Rimoin, J. M. Connor, R. E. Pyeritz, & B. R. Korf (Eds.), Emery and Rimoin’s principles and practice of medical genetics (5th ed., pp. 3579-3624). Philadelphia: Churchill Livingstone Elsevier.
28.
Pyszczynski, T., & Greenberg, J. ( 1986). Evidence for a depressive self-focusing style. Journal of Personality and Social Psychology, 50, 95-106.
29.
Reid, G.J., Dubow, E.F., Carey, T.C., & Dura, J.C. ( 1994). Contribution of coping to medical adjustment and treatment responsibility among children and adolescents and young adults with diabetes . Journal of Developmental and Behavioral Pediatrics, 15, 327-335.
30.
Richards, L. ( 1999). Introducing NVivo: A workshop handbook. Melbourne, Australia: Qualitative Solutions and Research Pty., Ltd.
31.
Riley, A.W. ( 2004). Evidence that school-age children can self-report on their health. Ambulatory Pediatrics, 4(Suppl.), 371-376.
32.
Shores, J., Berger, K.R., Murphy, E.A., & Pyeritz, R.E. ( 1994). Progression of aortic dilation and the benefit of long-term beta-adrenergic blockade in Marfan’s syndrome. New England Journal of Medicine, 330, 1335-1341.
33.
Stein, R.E.K., & Jessop, D.J. ( 1982). A non-categorical approach to chronic childhood illness . Public Health Reports, 97, 354-362.
34.
Van Pelt, J.C., Mullins, L.L., Carpentier, M.Y., & Wolfe-Christiansen, C. (2006). Brief report: Illness uncertainty and dispositional self-focus in adolescents with childhood-onset asthma. Journal of Pediatric Psychology, 31, 840-845.
35.
Van Tongerloo, A., & DePaepe, A. ( 1998). Psychosocial adaptations in adolescents with Marfan syndrome: An exploratory study. Journal of Medical Genetics, 35, 405-409.
36.
Vas, P., & Bruno, F. ( 2003). Types of self-surveillance: From abnormality to individuals "at risk."Surveillance & Society, 1, 272-291.
