Advances in Clinical and Experimental Medicine
2018, vol. 27, nr 2, February, p. 229–236
Publication type: original article
Social and medical determinants of quality of life and life satisfaction in women with Turner syndrome
1 Outpatient Clinic for Women with Turner Syndrome, Specialist Hospital No. 2, Bytom, Poland
2 Chair of Epidemiology and Preventive Medicine, Jagiellonian University Medical College, Kraków, Poland
3 Department of Quality of Life Research, Medical University of Gdańsk, Poland
4 Department of Adult Psychiatry, Medical University of Gdańsk, Poland
5 Department of Health Promotion and Community Nursing, Faculty of Health Sciences, Medical University of Silesia, Katowice, Poland
6 Department of Nephrology/ENDO, Hospital of Ministry of the Interior and Administration, Katowice, Poland
Background. Turner syndrome (TS) appears in women as a result of the lack of part or the whole of one of the X chromosomes. It is characterized by the occurrence of low height, hypogonadism, numerous developmental defects, and is often accompanied by psychological disturbances.
Objectives. Although the phenotype characteristics of women with TS are quite well documented, the knowledge of the impact of Turner syndrome on the satisfaction with life is still insufficient. The aim of our study was to assess the impact of TS on selected variables of quality of life, and hence also life satisfaction in women with this syndrome.
Material and Methods. The research was carried out in a group of 176 women with TS starting March 1995. The patients underwent anthropological and medical examinations, and their medical histories were taken using a questionnaire that included demographic and psychosocial items as well as issues related to selected variables of quality of life. In our research model, general life satisfaction was a dependent variable. The statistical analysis was conducted using the eta and Cramer’s V correlation coefficients as well as a multidimensional logistic regression model.
Results. The main determinants of dissatisfaction with life in women with TS were short stature and feelings of loneliness and being handicapped.
Conclusion. The determinants of life satisfaction in women with Turner syndrome were closely related to the private life of the study participants, in particular self-perception and feelings concerning their health status.
education, life satisfaction, health-related quality of life, Turner syndrome, sexual sphere
- Turner H. A syndrome of infantilism congenital webbed neck, and cubitus valgus. Endocrinology. 1938;23:566–574.
- Davenport ML. Approach to the patient with Turner syndrome. J Clin Endocrinol Metab. 2010;95:1487–1495.
- Jeż W, Makieła E, Lewandowski P. Pregnancy in a woman with Turner Syndrome: Two new cases. Gin Pol. 2006;77:307–309.
- Wiśniewski A. Chorzy na zespół Turnera są wśród Twoich pacjentów. Klinika. 1993;2:40–43.
- Verlinde F, Massa G, Lagrou K, et al. Health and psychosocial status of patients with Turner’s syndrome after transition to adulthood: The Belgian experience. Horm Res. 2004;62:161–167.
- Lew-Starowicz Z, Jeż W, Irzyniec T, Kabzińska M, Boćkowska E. Sexual aspects of women with Turner’s syndrome. Sex Disabil. 2003;21: 241–248.
- Boman UW, Bryman I, Möller A. Psychological well-being in women with Turner syndrome: Somatic and social correlates. J Psychosom Obstet Gynaecol. 2004;25:211–219.
- Dołęga Z, Turek A, Irzyniec T, Jeż W. Gender, body image and sense of loneliness of women after receiving a Turner’s syndrome diagnosis. Psychol J. 2012;18:143–153.
- Carel JC, Ecosse E, Bastie-Sigeac I, et al. Quality of life determinants in young women with Turner’s syndrome after growth hormone treatment: Results of the StaTur population-based cohort study. J Clin Endocrinol Metab. 2005;90:1992–1997.
- Bannink EM, Raat H, Mulder PG, de Muinck Keizer-Schrama SM. Quality of life after growth hormone therapy and induced puberty in women with Turner syndrome. J Pediatr. 2006;148:95–101.
- Ross JL, McCauley E, Roeltgen D, et al. Self-concept and behavior in adolescent girls with Turner syndrome: Potential estrogen effects. J Clin Endocrinol Metab. 1996;81:926–931.
- Amundson E, Boman UW, Barrenäs ML, Bryman I, Landin-Wilhelmsen K. Impact of growth hormone therapy on quality of life in adults with Turner syndrome. J Clin Endocrinol Metab. 2010;95:1355–1359.
- Taback SP, Van Vliet G. Health-related quality of life of young adults with Turner syndrome following a long-term randomized controlled trial of recombinant human growth hormone. BMC Pediatrics. 2011; 11:49. doi:10.1186/1471-2431-11-49.
- Zuckerman-Levin N, Frolova-Bishara T, Militianu D, Levin M, Aharon-Peretz J, Hochberg Z. Androgen replacement therapy in Turner syndrome: A pilot study. J Clin Endocrinol Metab. 2009;94:4820–4827.
- Zenaty D, Laurent M, Carel JC, Leger J. Turner Syndrome: What’s new in medical care? Arch Pediatr. 2011;18:1343–1347.
- Turtle EJ, Sule AA, Bath LE. Assessing and addressing cardiovascular risk in adults with Turner syndrome. Clin Endocrinol (Oxf). 2013;78: 639–645.
- Azurah AG, Zainuddin AA, Jayasinghe Y. Diagnostic pitfalls in the evaluation and management of amenorrhea in adolescents. J Reprod Med. 2013;58;324–336.
- Robbins CC, Wolfe M, Squires K, Jungheim E, Weiner L. Discussion: ‘Congenital hypogonadisms impair quality of life and sexual function,’ by Ross et al. Am J Obstet Gynecol. 2013;208:e1–e3.
- Nelke KH, Pawlak W, Gerber H, Leszczyszyn J. Head and neck cancer patients’ quality of life. Adv Clin Exp Med. 2014;23:1019–1027.
- Konradsen B, Nielsen J. Follow up study of 69 Turner women. In: Hibi I, Takano K, eds. Basic and Clinical Approach to Turner’s Syndrome. Amsterdam: Elsevier; 1993:177–183.
- Dołęga Z, Jeż W, Irzyniec T. The cohort effect in studies related to differences in psychosocial functioning of women with Turner syndrome. Endokrynol Pol. 2014;65:287–294.
- Job JC, Laudier F; The Cabi Collaborative Study Group. Three-year results of treatment with growth hormone, alone or associated with oxandrolone in girls with Turner’s syndrome. Horm Res. 1991;35:229.
- Hettmer E, Hoepffner W, Keller E, Brähler E. Studies on sexual development, sexual behavior and ability to experience sex of young women with Ullrich-Turner syndrome. Ther Umsch. 1995;52:146–149.
- Jeż W, Irzyniec T, Lew-Starowicz Z. Sexual life and lifestyle of women with Turner’s syndrome. Sex Disabil. 2006;24:207–212.
- Menke LA, Sas TC, Visser M, et al. The effect of the weak androgen oxandrolone on psychological and behavioral characteristics in growth hormone-treated girls with Turner syndrome. Horm Behav. 2010;57:297–305.
- Jeż W. Non-medical care of the patient with Turner’s syndrome and the use by parents and husband help in solving their own problems associated with Turner syndrome. In: Jeż W, Cybulska D, Buliński A, Jarząb B, Jarząb J, eds. Turner’s Syndrome. Poznan: Termedia Wydawnictwa Medyczne; 2010:136–141.