Quality of life and psychological distress in patients with Peutz-Jeghers syndrome
Little is known about psychological distress and quality of life (QoL) in patients with Peutz-Jeghers syndrome (PJS), a rare hereditary disorder. We aimed to assess QoL and psychological distress in PJS patients compared to the general population, and to evaluate determinants of QoL and psychological distress in a cross-sectional study. PJS patients completed a questionnaire on QoL, psychological distress, and illness perceptions. The questionnaire was returned by 52 patients (85% response rate, 56% females, median age 44.5 years). PJS patients reported similar anxiety (p = 0.57) and depression (p = 0.61) scores as the general population. They reported a lower general health perception (p = 0.003), more limitations due to emotional problems (p = 0.045) and a lower mental well-being (p = 0.036). Strong beliefs in negative consequences of PJS on daily life, a relapsing course of the disease, strong emotional reactions to PJS, and female gender were major determinants for a lower QoL. PJS patients experience a similar level of psychological distress as the general population, but a poorer general health perception, more limitations due to emotional problems, and a poorer mental QoL. Illness perceptions and female gender were major predictors for this lower QoL. These results may help to recognize PJS patients who might benefit from psychological support.
|Keywords||Hospital Anxiety and Depression Scale, Illness perception, Jeghers syndrome, Peutz, Peutz Jeghers syndrome, Psychological distress, Quality of life, Short Form 36, adult, aged, anxiety, article, controlled study, cross-sectional study, depression, distress syndrome, emotionality, female, gender, human, major clinical study, male, patient assessment, perception, population, priority journal, psychological well being, quality of life, questionnaire, scoring system|
|Persistent URL||dx.doi.org/10.1111/j.1399-0004.2010.01469.x, hdl.handle.net/1765/20851|
|Journal||Clinical Genetics: an international journal of genetics and molecular medicine|
van Lier, M.G.F, Mathus-Vliegen, E.M.H, van Leerdam, M.E, Kuipers, E.J, Looman, C.W.N, Wagner, A, & Vanheusden, K. (2010). Quality of life and psychological distress in patients with Peutz-Jeghers syndrome. Clinical Genetics: an international journal of genetics and molecular medicine, 78(3), 219–226. doi:10.1111/j.1399-0004.2010.01469.x