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Published in: Child and Adolescent Psychiatry and Mental Health 1/2012

Open Access 01-12-2012 | Research

Health- related quality of life and self-worth in 10-year old children with congenital hypothyroidism diagnosed by neonatal screening

Authors: Liesbeth van der Sluijs Veer, Marlies JE Kempers, Heleen Maurice-Stam, Bob F Last, Tom Vulsma, Martha A Grootenhuis

Published in: Child and Adolescent Psychiatry and Mental Health | Issue 1/2012

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Abstract

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.
Literature
1.
go back to reference Heyerdahl S: Longterm outcome in children with congenital hypothyroidism. Acta Paediatr. 2001, 90: 1220-1222. 10.1111/j.1651-2227.2001.tb01564.x.CrossRefPubMed Heyerdahl S: Longterm outcome in children with congenital hypothyroidism. Acta Paediatr. 2001, 90: 1220-1222. 10.1111/j.1651-2227.2001.tb01564.x.CrossRefPubMed
2.
go back to reference 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.CrossRef 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.CrossRef
3.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
4.
go back to reference Leneman M, Buchanan L, Rovet J: Where and what visuospatial processing in adolescents with congenital hypothyroidism. J Int Neuropsychol Soc. 2001, 7: 556-562. 10.1017/S1355617701755038.CrossRefPubMed Leneman M, Buchanan L, Rovet J: Where and what visuospatial processing in adolescents with congenital hypothyroidism. J Int Neuropsychol Soc. 2001, 7: 556-562. 10.1017/S1355617701755038.CrossRefPubMed
5.
go back to reference 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. 10.1542/peds.112.4.923.CrossRefPubMed 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. 10.1542/peds.112.4.923.CrossRefPubMed
6.
go back to reference Rovet JF: Congenital hypothyroidism: an analysis of persisting deficits and associated factors. Neuropsychol Dev Cogn Sect C Child Neuropsychol. 2002, 8: 150-162. Rovet JF: Congenital hypothyroidism: an analysis of persisting deficits and associated factors. Neuropsychol Dev Cogn Sect C Child Neuropsychol. 2002, 8: 150-162.
7.
go back to reference 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. 10.1111/j.1469-7610.2007.01755.x.CrossRefPubMed 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. 10.1111/j.1469-7610.2007.01755.x.CrossRefPubMed
8.
go back to reference Pinquart M, Shen Y: Behavior problems in children and adolescents with chronic physical illness: A meta-analysis. J Pediatr Psychol. 2011, 36: 1003-1016. 10.1093/jpepsy/jsr042.CrossRefPubMed Pinquart M, Shen Y: Behavior problems in children and adolescents with chronic physical illness: A meta-analysis. J Pediatr Psychol. 2011, 36: 1003-1016. 10.1093/jpepsy/jsr042.CrossRefPubMed
9.
go back to reference 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. 10.1016/S1607-551X(09)70561-3.CrossRefPubMed 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. 10.1016/S1607-551X(09)70561-3.CrossRefPubMed
10.
go back to reference 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. 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.
go back to reference 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. 10.1530/EJE-10-0761.CrossRefPubMed 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. 10.1530/EJE-10-0761.CrossRefPubMed
12.
go back to reference 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. 10.1210/jc.2007-1560.CrossRefPubMed 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. 10.1210/jc.2007-1560.CrossRefPubMed
13.
go back to reference 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. 10.1111/j.1442-200X.2008.02686.x.CrossRefPubMed 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. 10.1111/j.1442-200X.2008.02686.x.CrossRefPubMed
14.
go back to reference 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.CrossRef 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.CrossRef
15.
go back to reference de Haan RJ: Measuring quality of life after stroke using the SF-36. Stroke. 2002, 33: 1176-1177. 10.1161/01.STR.0000015223.98452.97.CrossRefPubMed de Haan RJ: Measuring quality of life after stroke using the SF-36. Stroke. 2002, 33: 1176-1177. 10.1161/01.STR.0000015223.98452.97.CrossRefPubMed
16.
go back to reference Coopersmith S: The Antecedents of Self-esteem. 1981, Palo Alto, CA: Consulting Psychologists Press Coopersmith S: The Antecedents of Self-esteem. 1981, Palo Alto, CA: Consulting Psychologists Press
17.
go back to reference Shavelson RJ, Bolus R: The interplay of theory and methods. J Educ Psychol. 1982, 74: 3-17.CrossRef Shavelson RJ, Bolus R: The interplay of theory and methods. J Educ Psychol. 1982, 74: 3-17.CrossRef
18.
go back to reference Stanwyck DJ: Self-esteem through the life span. Fam Coommunity Health. 1983, 6: 11-28.CrossRef Stanwyck DJ: Self-esteem through the life span. Fam Coommunity Health. 1983, 6: 11-28.CrossRef
19.
go back to reference 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. 10.1001/jama.297.24.2741.CrossRefPubMed 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. 10.1001/jama.297.24.2741.CrossRefPubMed
20.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
21.
go back to reference 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. 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.
go back to reference Vogels T, Bruil J, Koopman H, Fekkes M, Verrips GHW: TACQOL CF 12–15 Manual. 2004, Leiden: TNO Prevention and Health Vogels T, Bruil J, Koopman H, Fekkes M, Verrips GHW: TACQOL CF 12–15 Manual. 2004, Leiden: TNO Prevention and Health
23.
go back to reference 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. 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.
go back to reference Veerman JW, Straathof MAE, Treffers DA, van den Bergh BRH, Ten Brink LT: Competentiebelevingsschaal voor kinderen (CBSK). Manual [manual of the self-perception scale for children]. 1997, Lisse: Swets & Zeitlinger B.V Veerman JW, Straathof MAE, Treffers DA, van den Bergh BRH, Ten Brink LT: Competentiebelevingsschaal voor kinderen (CBSK). Manual [manual of the self-perception scale for children]. 1997, Lisse: Swets & Zeitlinger B.V
25.
go back to reference 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. 2002, The Netherlands: Harcourt Test Publishers 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. 2002, The Netherlands: Harcourt Test Publishers
26.
go back to reference Henderson SE, Sudgen DA: Movement Assessment Battery for Children: Manual. 1992, London, United Kingdom: Psychological Corporation Henderson SE, Sudgen DA: Movement Assessment Battery for Children: Manual. 1992, London, United Kingdom: Psychological Corporation
27.
go back to reference Smits-Engelsman BCM Movement ABC: Nederlandse Handleiding [Dutch manual]. 1998, Lisse, The Netherlands: Swets & Zeitlinger Smits-Engelsman BCM Movement ABC: Nederlandse Handleiding [Dutch manual]. 1998, Lisse, The Netherlands: Swets & Zeitlinger
28.
go back to reference Cohen J: Statistical power for analysis for the behavioral sciences. 1977, New York: Academic Cohen J: Statistical power for analysis for the behavioral sciences. 1977, New York: Academic
29.
go back to reference 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. 10.1016/S0895-4356(99)00014-1.CrossRefPubMed 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. 10.1016/S0895-4356(99)00014-1.CrossRefPubMed
30.
go back to reference Tinelli F: Behavioural disorders in adolescents with early- treated congenital hypothyroidism. Funct Neurol. 2003, 18 (3): 161-164.PubMed Tinelli F: Behavioural disorders in adolescents with early- treated congenital hypothyroidism. Funct Neurol. 2003, 18 (3): 161-164.PubMed
31.
go back to reference 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. 10.1080/13682820600691017.CrossRefPubMed 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. 10.1080/13682820600691017.CrossRefPubMed
32.
go back to reference Derksen-Lubsen G, Verkerk PH: Neuropsychologic development in early treated congenital hypothyroidism: analysis of literature data. Pediatr Res. 1996, 39: 561-566. 10.1203/00006450-199603000-00028.CrossRefPubMed Derksen-Lubsen G, Verkerk PH: Neuropsychologic development in early treated congenital hypothyroidism: analysis of literature data. Pediatr Res. 1996, 39: 561-566. 10.1203/00006450-199603000-00028.CrossRefPubMed
33.
go back to reference Rovet JF: In search of the optimal therapy for congenital hypothyroidism. J Pediatr. 2004, 144: 698-700.CrossRefPubMed Rovet JF: In search of the optimal therapy for congenital hypothyroidism. J Pediatr. 2004, 144: 698-700.CrossRefPubMed
34.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
35.
go back to reference Rovet JF, Hepworth S: Attention problems in adolescents with congenital hypothyroidism: a multicomponential analysis. J Int Neuropsychol Soc. 2001, 7: 734-744. 10.1017/S135561770176609X.CrossRefPubMed Rovet JF, Hepworth S: Attention problems in adolescents with congenital hypothyroidism: a multicomponential analysis. J Int Neuropsychol Soc. 2001, 7: 734-744. 10.1017/S135561770176609X.CrossRefPubMed
36.
go back to reference 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. 10.1097/00004703-200112000-00005.CrossRefPubMed 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. 10.1097/00004703-200112000-00005.CrossRefPubMed
37.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
38.
go back to reference 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. 10.1210/jc.2006-0414.CrossRefPubMed 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. 10.1210/jc.2006-0414.CrossRefPubMed
39.
go back to reference 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: 3-10.1186/1471-2431-11-3.PubMedCentralCrossRefPubMed 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: 3-10.1186/1471-2431-11-3.PubMedCentralCrossRefPubMed
40.
go back to reference 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: 34-10.1186/1477-7525-3-34.CrossRef 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: 34-10.1186/1477-7525-3-34.CrossRef
41.
go back to reference 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. 10.1007/s00787-003-0341-3.CrossRef 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. 10.1007/s00787-003-0341-3.CrossRef
Metadata
Title
Health- related quality of life and self-worth in 10-year old children with congenital hypothyroidism diagnosed by neonatal screening
Authors
Liesbeth van der Sluijs Veer
Marlies JE Kempers
Heleen Maurice-Stam
Bob F Last
Tom Vulsma
Martha A Grootenhuis
Publication date
01-12-2012
Publisher
BioMed Central
Published in
Child and Adolescent Psychiatry and Mental Health / Issue 1/2012
Electronic ISSN: 1753-2000
DOI
https://doi.org/10.1186/1753-2000-6-32

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