Chinese Medicine | |
Health- related quality of life and self-worth in 10-year old children with congenital hypothyroidism diagnosed by neonatal screening | |
Martha A Grootenhuis3  Tom Vulsma1  Bob F Last4  Heleen Maurice-Stam3  Marlies JE Kempers2  Liesbeth van der Sluijs Veer3  | |
[1] Department of Pediatric Endocrinology, Emma Children’s Hospital, Academic Medical Center, Amsterdam, The Netherlands;Department of Clinical Genetics, Radboud Universtiy Nijmegen Medical Centre, Nijmegen, The Netherlands;Pediatric Psychosocial Department, Emma Children’s Hospital AMC, A3-241, P.O. Box 22700,, 1100,, DE, Amsterdam, The Netherlands;Department of Developmental psychology, VU University, Amsterdam, The Netherlands | |
关键词: Children; Self-worth; Quality of life; Congenital hypothyroidism; | |
Others : 791234 DOI : 10.1186/1753-2000-6-32 |
|
received in 2012-03-13, accepted in 2012-09-24, 发布年份 2012 | |
【 摘 要 】
Background
Much is written about cognitive and motor development; less is known about social and emotional consequences of growing up with congenital hypothyroidism (CH).
The objectives of the study were: (1) to compare health related quality of life (HRQoL) and self-worth of 10 year old patients with CH with the general population; (2) to explore associations of disease factors, IQ and motor skills with the outcomes.
Methods
Children with CH and their parents completed several questionnaires. Patients were classified to ‘severe CH, n = 41’ or ‘moderate/mild CH, n = 41’ based on pre-treatment FT4 concentration.
Differences between CH and the general population were tested by analysis of covariance and one sample t-tests (mean scale scores HRQoL and self-worth), chi-square tests and binomial tests (% at risk of impaired HRQoL and self-worth). Linear regression analyses corrected for gender were conducted to explore associations of the outcomes with disease factors, IQ and motor skills.
Results
Patients with CH reported lower mean HRQoL on motor, cognitive and social functioning, and on autonomy and positive emotions (p < 0.0001). Patients were also more often at risk for impaired HRQoL and self-worth. No differences were found between the severity groups. Lower IQ was only significant associated with worse cognitive HRQoL. Initial FT4 plasma, age at onset of therapy, initial T4 dose and motor skills were not significantly associated with HRQoL and self-worth.
Conclusions
Negative consequences in terms of HRQoL and self-worth are prevalent in children with CH, independent of disease factors, IQ and motor skills. Physicians should to be attentive to these consequences and provide attention and supportive care.
【 授权许可】
2012 van der Sluijs Veer et al.; licensee BioMed Central Ltd.
【 预 览 】
Files | Size | Format | View |
---|---|---|---|
20140705011635271.pdf | 230KB | download |
【 参考文献 】
- [1]Heyerdahl S: Longterm outcome in children with congenital hypothyroidism. Acta Paediatr 2001, 90:1220-1222.
- [2]American Academy of Pediatrics Section on Endocrinology and Committee on Genetics American Thyroid Association Public Health Committee Lawson Wilkins Pediatric Endocrine Society, Rose SR, Brown RS, Foley T, Kaplowitz PB, Kave CI, Sundararajan S, Varma SK: Update of newborn screening and therapy for congenital hypothyroidism. Pediatrics 2006, 117:2290-2303.
- [3]Kempers M, van der Sluijs Veer L, Nijhuis-van der Sanden M, Lanting C, Kooistra L, Wiedijk B, et al.: A decade of progress in neonatal screening on congenital hypothyroidism in The Netherlands: cognitive and motor outcome at the age of 10 years. J Clin Endocrinol Metab 2007, 92(3):919-924.
- [4]Leneman M, Buchanan L, Rovet J: Where and what visuospatial processing in adolescents with congenital hypothyroidism. J Int Neuropsychol Soc 2001, 7:556-562.
- [5]Oerbeck B, Sundet K, Kase BF, Heyerdahl S: Congenital hypothyroidism: Influence of disease severity and L-thyroxine treatment on intellectual, motor, and school-associated outcomes in young adults. Pediatrics 2003, 112:923-930.
- [6]Rovet JF: Congenital hypothyroidism: an analysis of persisting deficits and associated factors. Neuropsychol Dev Cogn Sect C Child Neuropsychol. 2002, 8:150-162.
- [7]Hysing M, Elgen I, Gillberg C, Lie SA, Lundervold AJ: Chronic physical illness and mental health in children. Results from a large-scale population study. J Child Psychol Psychiatry 2007, 48:785-792.
- [8]Pinquart M, Shen Y: Behavior problems in children and adolescents with chronic physical illness: A meta-analysis. J Pediatr Psychol 2011, 36:1003-1016.
- [9]Chao MC, Yang P, Hsu HY, Jong YJ: Follow-up study of behavioral development and parenting stress profiles in children with congenital hypothyroidism. Kaohsiung J Med Sci 2009, 25:588-595.
- [10]Jusiene R, Kucinskas V: Psychological adjustment of children with congenital hypothyroidism and phenylketonuria as related to parental psychological adjustment. Medicina (Kaunas) 2004, 40:663-670.
- [11]Bisacchi N, Bal MO, Nardi L, Bettocchi I, D’Addabbo G, Conti V, Monti S, D’Alberton F, Cicoqnani A, Cassio A: Psychological and behavioural aspects in children and adolescents with congenital hypothyroidism diagnosed by neonatal screening: comparison between parents’and children’s perceptions. Eur J Endocrinol 2011, 164(2):269-276.
- [12]van der Sluijs Veer L, Kempers MJ, Last BF, Vulsma T, Grootenhuis MA: Quality of life, developmental milestones, and self-esteem of young adults with congenital hypothyroidism diagnosed by neonatal screening. J Clin Endocrinol Metab 2008, 93:2654-2661.
- [13]Sato H, Nakamura N, Harada S, Kakee N, Sasaki N: Quality of life of young adults with congenital hypothyroidism. Pediatr Int 2009, 51:126-131.
- [14]Léger J, Ecosse E, Roussey M, Lanoë JL, Larroque B: French Congenital Hypothyroidism Study Group. Subtle health impairment and socioeducational attainment in young adult patients with congenital hypothyroidism diagnosed by neonatal screening: a longtidunal population- based cohort study. J Clin Endocrinol Metab 2011, 96(6):126-131.
- [15]de Haan RJ: Measuring quality of life after stroke using the SF-36. Stroke 2002, 33:1176-1177.
- [16]Coopersmith S: The Antecedents of Self-esteem. Palo Alto, CA: Consulting Psychologists Press; 1981.
- [17]Shavelson RJ, Bolus R: The interplay of theory and methods. J Educ Psychol 1982, 74:3-17.
- [18]Stanwyck DJ: Self-esteem through the life span. Fam Coommunity Health 1983, 6:11-28.
- [19]van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M: Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA 2007, 297:2741-2751.
- [20]Vogels AGC, Verrips GHW, Fekkes M, Kamphuis RP, Koopman HM, Theunissen NCM, et al.: Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998, 7:457-469.
- [21]Verrips GHW, Vogels TGC, Koopman HM, Theunissen NCM, Kamphuis RP, Fekkes M, et al.: Measuring health-related quality of life in a child population. Eur J Publ Health 1999, 9(114):119.
- [22]Vogels T, Bruil J, Koopman H, Fekkes M, Verrips GHW: TACQOL CF 12–15 Manual. Leiden: TNO Prevention and Health; 2004.
- [23]Verrips GHW, Vogels TGC, Verloove-Vanhorick SP, Fekkes M, Koopman HM, Kamphuis RP, et al.: Health-Related Quality of Life measure for children- the TACQOL. J Appl Therapeut 1998, 1(357):360.
- [24]Veerman JW, Straathof MAE, Treffers DA, van den Bergh BRH, Ten Brink LT: Competentiebelevingsschaal voor kinderen (CBSK). In Manual [manual of the self-perception scale for children]. Lisse: Swets & Zeitlinger B.V; 1997.
- [25]Kort W, Compaan EL, Bleichrodt N, Resing WCM, Schittekatte M, Bosmans M, Vermeir G, Verhaeghe P: WISC-III, 3rd edition NL. Wechsler D.Handleiding. [Dutch manual] Amsterdam. The Netherlands: Harcourt Test Publishers; 2002.
- [26]Henderson SE, Sudgen DA: Movement Assessment Battery for Children: Manual. London, United Kingdom: Psychological Corporation; 1992.
- [27]Smits-Engelsman BCM Movement ABC: Nederlandse Handleiding [Dutch manual]. Lisse, The Netherlands: Swets & Zeitlinger; 1998.
- [28]Cohen J: Statistical power for analysis for the behavioral sciences. New York: Academic; 1977.
- [29]Rose MS, Koshman ML, Spreng S, Sheldon R: Statistical issues encountered in the comparison of health-related quality of life in diseased patients to published general population norms: problems and solutions. J Clin Epidemiol 1999, 52:405-412.
- [30]Tinelli F: Behavioural disorders in adolescents with early- treated congenital hypothyroidism. Funct Neurol 2003, 18(3):161-164.
- [31]Grootenhuis MA, Koopman HM, Verrips EG, Vogels AG, Last BF: Health-related quality of life problems of children aged 8–11 years with a chronic disease. Dev Neurorehabil 2007, 10:27-33.
- [32]Derksen-Lubsen G, Verkerk PH: Neuropsychologic development in early treated congenital hypothyroidism: analysis of literature data. Pediatr Res 1996, 39:561-566.
- [33]Rovet JF: In search of the optimal therapy for congenital hypothyroidism. J Pediatr 2004, 144:698-700.
- [34]Rovet J, Daneman D: Congenital hypothyroidism: a review of current diagnostic and treatment practices in relation to neuropsychologic outcome. Paediatr Drugs 2003, 5:141-149.
- [35]Rovet JF, Hepworth S: Attention problems in adolescents with congenital hypothyroidism: a multicomponential analysis. J Int Neuropsychol Soc 2001, 7:734-744.
- [36]Song SI, Daneman D, Rovet J: The influence of etiology and treatment factors on intellectual outcome in congenital hypothyroidism. J Dev Behav Pediatr 2001, 22:376-384.
- [37]Kempers MJ, van der Sluijs Veer L, der Sanden MW N-v, Kooistra L, Wiedijk BM, Faber I, et al.: Intellectual and motor development of young adults with congenital hypothyroidism diagnosed by neonatal screening. J Clin Endocrinol Metab 2006, 91:418-424.
- [38]Saravanan P, Visser TJ, Dayan CM: Psychological well-being correlates with free thyroxine but not free 3,5,3'-triiodothyronine levels in patients on thyroid hormone replacement. J Clin Endocrinol Metab 2006, 91:3389-3393.
- [39]Haverman L, Engelen V, van Rossum MA, Heymans HS, Grootenhuis MA: Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application. BMC Pediatr 2011, 11:3. BioMed Central Full Text
- [40]Varni JW, Burwinkle TM, Lane MM: Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcome 2005, 3:34. BioMed Central Full Text
- [41]Van Widenfelt BM, Goedhart AW, Treffers PD, Goodman R: Dutch version of the Strengths and Difficulties Questionnaire (SDQ). Eur Child Adolesc Psychiatr 2003, 12:281-289.