Top

Quality of Life Research

Gepubliceerd in:

09-02-2018 | Review

Systematic review of quality of life in Turner syndrome

Auteurs: Carolina Trombeta Reis, Maíra Seabra de Assumpção, Gil Guerra-Junior, Sofia Helena Valente de Lemos-Marini

Gepubliceerd in: Quality of Life Research | Uitgave 8/2018

Abstract

Purpose

This study aimed to systematically review the available literature on “quality of life” (QoL) or “health-related quality of life” (HRQoL) in Turner syndrome (TS) patients and to analyze the relations among height, puberty, and the use of growth hormone (GH) and the QoL of TS patients.

Methods

An electronic bibliographic search was conducted through the PubMed, Embase, Bireme, Scopus, and Web of Science databases. The main terms were “Quality of Life” and “Turner syndrome.”

Results

Among the databases, 559 articles were found; after the selection process, 13 studies were selected. A quality assessment was conducted, and all the studies were of high quality. Eight well-known QoL questionnaires were used, and the selected studies presented factors that may be related to the QoL of TS patients, such as height, puberty, and GH use. However, a more detailed understanding of which factors are associated with the QoL of TS patients is still needed, which may be due to the lack of specific QoL instruments involving important aspects related to TS.

Conclusion

The QoL of TS patients appears to be compromised, but existing data regarding the relations among height, puberty, and GH and QoL are still controversial. Although these factors should be carefully considered in TS patients, it was not possible to determine whether they have a significant relation with the QoL of TS patients.

vorige artikel Influence of sense of coherence on oral health-related quality of life: a systematic review

volgende artikel A systematic review of Indigenous caregiver functioning and interventions

Baena, N., Vigan, C., Cariati, E., Clementi, M., Stoll, C., Caballín, M., et al. (2004). Turner syndrome: Evaluation of prenatal diagnosis in 19 European registries. American Journal of Medical Genetics, 129(A), 16–20. https://doi.org/10.1002/ajmg.a.30092.CrossRef

Jacobs, P., Dalton, P., James, R., Mosse, K., Power, M., & Robinson, D. (1997). Turner syndrome: A cytogenetic and molecular study. Annals of Human Genetics, 61, 471–483.CrossRefPubMed

Nielsen, J., & Wohlert, M. (1990). Sex chromosome abnormalities found among 34,910 newborn children: results from a 13-year incidence study in Arhus, Denmark. Birth Defects Original Article Series, 26(4), 209–223.PubMed

Sybert, V. P., & McCauley, E. (2004). Turner’s syndrome. New England Journal of Medicine, 351, 1227–1238.CrossRefPubMed

Bondy, C. A. (2006). Turner’s syndrome and X chromosome - based differences in disease susceptibility. Gender Medicine, 3(1), 18–30.CrossRefPubMed

Donaldson, M. D. C., Gault, E. J., Tan, K. W., & Dunger, D. B. (2006). Optimising management in Turner syndrome: from infancy to adult transfer. Archives of Disease in Childhood, 91, 513–520.CrossRefPubMedPubMedCentral

Power, T., Langlois, N. E. I., & Byard, R. W. (2014). The forensic implications of Turner’s syndrome. Journal of Forensic Sciences, 59(3), 671–675.CrossRefPubMed

Wang, S., Yang, L., Li, J., & Mu, Y. (2015). Concurrent insulinoma with mosaic Turner syndrome: A case report. Experimental and Therapeutic Medicine, 9, 801–804.CrossRefPubMedPubMedCentral

Gawlik, A., & Malecka-Tendera, E. (2014). Treatment of Turner’s syndrome during transition. European Journal of Endocrinology, 170, R57-R74.CrossRef

10.

Giordano, R., Forno, D., Lanfranco, F., Manieri, C., Ghizzoni, L., & Ghigo, E. (2011). Metabolic and cardiovascular outcomes in a group of adult patients with Turner’s syndrome under hormonal replacement therapy. European Journal of Endocrinology, 164, 819–826.CrossRefPubMed

11.

Levitsky, L. L., Luria, A. H. O., Hayes, F. J., & Lin, A. E. (2015). Turner syndrome: Update on biology and management across the life span. Current Opinion in Endocrinology, Diabetes and Obesity, 22(1):65–72.CrossRef

12.

Lucaccioni, L., Wong, S. C., Smyth, A., Lyall, H., Dominiczak, A., Ahmed, S. F., et al. (2015). Turner syndrome—issues to consider for transition to adulthood. British Medical Bulletin, 113, 45–58.CrossRefPubMed

13.

Hong, D., Kent, J. S., & Kesler, S. (2009). Cognitive profile of Turner syndrome. Developmental Disabilities Research Reviews, 15(4), 270–278.CrossRefPubMedPubMedCentral

14.

Mccauley, E., Feuillan, P., Kushner, H., & Ross, J. L. (2001). Psychosocial development in adolescents with Turner syndrome. Journal of Developmental and Behavioral Pediatrics, 22(6), 360–365.CrossRefPubMed

15.

Marzelli, M. J., Hoeft, F., Hong, D. S., & Reiss, A. L. (2011). Neuroanatomical spatial patterns in Turner syndrome. NeuroImage, 55, 439–447.CrossRefPubMed

16.

Cohen, J. S., & Biesecker, B. B. (2010). Quality of life in rare genetic conditions: A systematic review of the literature. American Journal of Medical Genetics, 152A(5), 1136–1156. https://doi.org/10.1002/ajmg.a.33380.CrossRefPubMed

17.

The WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409.CrossRef

18.

Hoxha, P., Babameto-Laku, A., Vyshka, G., Gjoka, K., Minxuri, D., Myrtaj, E., et al. (2015). Turner syndrome in Albania and the efficacy of its treatment with growth hormone. Journal of Pediatric Endocrinology and Metabolism, 28(11–12), 1227–1234.PubMed

19.

Fekkes, M., Kamphuis, R. P., Ottenkamp, J., Verrips, E., Vogels, T., & Kamphuis, M. (2001). Health-related quality of life in young adults with minor congenital heart disease. Psychology and Health, 16, 239–251.CrossRef

20.

Dołega, Z., Jeż, W., & Irzyniec, T. (2014). The cohort effect in studies related to differences in psychosocial functioning of women with Turner syndrome. Endokrynologia Polska, 65(4), 287–294.CrossRefPubMed

21.

Ros, C., Alobid, I., Balasch, J., Mullol, J., & Castelo-Branco, C. (2013). Turner’s syndrome and other forms of congenital hypogonadism impair quality of life and sexual function. American Journal of Obstetrics and Gynecology, 208(6), 484.e1–484.e6.CrossRef

22.

Cardoso, G., Daly, R., Haq, N. A., Hanton, L., Rubinow, D. R., Bondy, C. A., et al. (2004). Current and lifetime psychiatric illness in women with Turner syndrome. Gynecological Endocrinology, 19(6), 313–319.CrossRefPubMed

23.

Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. BMJ, 339, b2535.CrossRefPubMedPubMedCentral

24.

Fowkes, F. G. R., & Fulton, P. M. (1991). Critical appraisal of published research: introductory guidelines. BMJ, 302, 1136–1140.CrossRefPubMedPubMedCentral

25.

Fjermestad, K. W., Naess, E. E., Bahr, D., & Gravholt, C. H. (2016). A 6-year follow-up survey of health status in middle-aged women with Turner syndrome. Clinical Endocrinology, 85, 423–429. https://doi.org/10.1111/cen.13068.CrossRefPubMed

26.

Freriks, K., Verhaak, C. M., Sas, T. C. J., Menke, L. A., Wit, J. M., Otten, B. J., et al. (2015). Long-term effects of oxandrolone treatment in childhood on neurocognition, quality of life and social - emotional functioning in young adults with Turner syndrome. Hormones and Behavior, 69, 59–67.CrossRefPubMed

27.

Nadeem, M., & Roche, E. F. (2014). Health-related quality of life in Turner syndrome and the influence of key features. Journal of Pediatric Endocrinology and Metabolism, 27(3–4), 283–289.PubMed

28.

Taback, S. P., & Van Vliet, G. (2011). 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, 11, 49.CrossRefPubMedPubMedCentral

29.

Lasaite, L., Lašiene, D., & Lašas, L. (2010). Cognition, emotions and quality of life in Lithuanian girls with Turner syndrome after growth hormone therapy discontinuation. Journal of Pediatric Endocrinology and Metabolism, 23(5), 443–450.CrossRefPubMed

30.

Amundson, E., Boman, U. W., Barrenas, M. L., Bryman, I., & Landin-Wilhelmsen, K. (2010). Impact of growth hormone therapy on quality of life in adults with Turner syndrome. Journal of Clinical Endocrinology and Metabolism, 95, 1355–1359.CrossRefPubMed

31.

Naess, E. E., Bahr, D., & Gravholt, C. H. (2010). Health status in women with Turner syndrome—a questionnaire study on health status, education, work participation and aspects of sexual functioning. Clinical Endocrinology, 72, 678–684. https://doi.org/10.1111/j.1365-2265.2009.03715.x.CrossRefPubMed

32.

Zuckerman-Levin, N., Frolova-Bishara, T., Militianu, D., Levin, M., Aharon-Peretz, J., & Hochberg, Z. (2009). Androgen replacement therapy in turner syndrome: A pilot study. Journal of Clinical Endocrinology and Metabolism, 94(12), 4820–4827.CrossRefPubMed

33.

Bannink, E. M., Raat, H., Mulder, P. G. H., & Keizer-schrama, S. M. P. F. M. (2006). Quality of life after growth hormone therapy and induced puberty in women with Turner syndrome. The Journal of Pediatrics, 148, 678–684.CrossRef

34.

Carel, J. C., Elie, C., Ecosse, E., Tauber, M., Léger, J., Sylvie, & Cabrol (2006). Self-esteem and social adjustment in young women with Turner syndrome- influence of pubertal management and sexuality: Population- based cohort study. Journal of Clinical Endocrinology and Metabolism, 91(80), 2972–2979.CrossRefPubMed

35.

Carel, J. C., Ecosse, E., Bastie-Sigeac, I., Cabrol, S., Tauber, M., Leger, J., et al. (2005). Quality of life determinants in young women with Turner’s syndrome after growth hormone treatment: Results of the StaTur population-based cohort study. Journal of Clinical Endocrinology and Metabolism, 90, 1992–1997.CrossRefPubMed

36.

Boman, U. W., Bryman, I., & Moller, A. (2004). Psychological well-being in women with Turner syndrome: Somatic and social correlates. Journal of Psychosomatic Obstetrics and Gynecology, 25, 211–219.CrossRefPubMed

37.

Boman, U. W., Bryman, I., Halling, K., & Moller, A. (2001). Women with Turner syndrome: Psychological well-being, self-rated health and social life. Journal of Psychosomatic Obstetrics Gynecology, 22(2), 113–122.CrossRefPubMed

38.

Borenstein, M., Hedges, L. V., Higgins, J. P. T., & Rothstein, H. R. (2009). When does it make sense to perform a meta-analysis?, in introduction to meta-analysis. Chichester: Wiley.

39.

Higgins, J.P.T, & Green, S. (Eds.)., Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Available from http://handbook.cochrane.org.

40.

Okada, Y. (1994). The quality of life of Turner women in comparison with grown-up GH-deficient women. Endocrine Journal, 41(4), 345–354.CrossRefPubMed

Titel: Systematic review of quality of life in Turner syndrome
Auteurs: Carolina Trombeta Reis
Maíra Seabra de Assumpção
Gil Guerra-Junior
Sofia Helena Valente de Lemos-Marini
Publicatiedatum: 09-02-2018
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 8/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-018-1810-y

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusion

Log in om toegang te krijgen

Andere artikelen Uitgave 8/2018

Impact of orthodontic treatment on adolescents’ quality of life: a longitudinal evaluation of treated and untreated individuals

Influence of changes in the Spanish labor market during the economic crisis (2007–2011) on perceived health

Deprivation is associated with worse physical and mental health beyond income poverty: a population-based household survey among Chinese adults

Measuring quality of life in patients with stress urinary incontinence: is the ICIQ-UI-SF adequate?

Prevalence of context effects: testing with a straightforward question of yesterday happiness

Maternal quality of life in routine labor epidural analgesia versus labor analgesia on request: results of a randomized trial