Anxiety, depression, and quality of life in parents of children with congenital hyperinsulinism.
Anxiety
Chronic disease
Congenital hyperinsulinism
Depression
Family burden
Mental health
Quality of life
Journal
European journal of pediatrics
ISSN: 1432-1076
Titre abrégé: Eur J Pediatr
Pays: Germany
ID NLM: 7603873
Informations de publication
Date de publication:
Jul 2022
Jul 2022
Historique:
received:
14
01
2022
accepted:
22
04
2022
revised:
11
04
2022
pubmed:
5
5
2022
medline:
16
6
2022
entrez:
4
5
2022
Statut:
ppublish
Résumé
This study aimed to assess mental health, family burden, and quality of life (PQoL) in parents of children with persistent congenital hyperinsulinism (CHI). Forty-eight individual CHI parents (75% female) completed self-reported questionnaires and screening tools for anxiety (GAD-7), depression (PHQ-8), PQoL (ULQIE), and family burden (FaBeL). Additional data on sociodemographics, social support, and child- and disease-related data were recorded. 29.8% of parents showed major depressive symptoms and 38.3% had a probable general anxiety disorder, including 20.8% who had both. The family burden was moderate and assessment of PQoL yielded average scores. Neurological impairment in an affected child (p = .002 and p < .001, respectively) and lower working hours (p = .001 and p = .012, respectively) were the strongest predictors of worse GAD-7 and PHQ-8 scores. Furthermore, lower working hours (p = .012) and comorbidities in the affected child (p = .007) were significantly associated with lower PQoL. Mothers had worse GAD-7 scores (p = .006) and lower PQoL (p = .035) than fathers. Indication of sleep disturbance was associated with worse PHQ-8 scores (p = .003), higher family burden (p = .039), and reduced PQoL (p = .003). A higher number of caretakers besides parents was associated with decreased family burden (p = .019), improved PQoL (p < .001), and lower scores for anxiety (p = .016) and depressive (p = .021) symptoms. Conclusion: Symptoms of depression and anxiety are alarmingly prevalent in parents of children with CHI. Psychological screening of parents should be initiated to ensure early identification of psychological strains and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being. What is Known: • Psychosocial strains and reduced quality of life are common in parents of chronically ill children. What is New: • In this first study evaluating mental health, family burden, and quality of life in parents of children with congenital hyperinsulinism (CHI), symptoms of depression and anxiety were alarmingly prevalent. • Parents of children with CHI should receive regular psychological screening and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being.
Identifiants
pubmed: 35507217
doi: 10.1007/s00431-022-04486-9
pii: 10.1007/s00431-022-04486-9
pmc: PMC9192457
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2779-2788Informations de copyright
© 2022. The Author(s).
Références
Vajravelu ME, De Leon DD (2018) Genetic characteristics of patients with congenital hyperinsulinism. Curr Opin Pediatr 30:568–575. https://doi.org/10.1097/MOP.0000000000000645
doi: 10.1097/MOP.0000000000000645
pubmed: 29750770
pmcid: 6084463
Guemes M, Hussain K (2015) Hyperinsulinemic hypoglycemia. Pediatr Clin North Am 62:1017–1036. https://doi.org/10.1016/j.pcl.2015.04.010
doi: 10.1016/j.pcl.2015.04.010
pubmed: 26210630
Meissner T, Wendel U, Burgard P, Schaetzle S, Mayatepek E (2003) Long-term follow-up of 114 patients with congenital hyperinsulinism. Eur J Endocrinol 149:43–51. https://doi.org/10.1530/eje.0.1490043
doi: 10.1530/eje.0.1490043
pubmed: 12824865
Ludwig A, Enke S, Heindorf J, Empting S, Meissner T, Mohnike K (2018) Formal neurocognitive testing in 60 patients with congenital hyperinsulinism. Horm Res Paediatr 89:1–6. https://doi.org/10.1159/000481774
doi: 10.1159/000481774
pubmed: 29151084
Helleskov A et al (2017) Both low blood glucose and insufficient treatment confer risk of neurodevelopmental impairment in congenital hyperinsulinism: a multinational cohort study. Front Endocrinol (Lausanne) 8:156. https://doi.org/10.3389/fendo.2017.00156
doi: 10.3389/fendo.2017.00156
Lord K, Radcliffe J, Gallagher PR, Adzick NS, Stanley CA, De Leon DD (2015) High risk of diabetes and neurobehavioral deficits in individuals with surgically treated hyperinsulinism. J Clin Endocrinol Metab 100:4133–4139. https://doi.org/10.1210/jc.2015-2539
doi: 10.1210/jc.2015-2539
pubmed: 26327482
pmcid: 4702456
Roeper M, Salimi Dafsari R, Hoermann H, Mayatepek E, Kummer S, Meissner T (2020) Risk factors for adverse neurodevelopment in transient or persistent congenital hyperinsulinism. Front Endocrinol (Lausanne) 11:580642. https://doi.org/10.3389/fendo.2020.580642
doi: 10.3389/fendo.2020.580642
Banerjee I, Raskin J, Arnoux JB, De Leon DD, Weinzimer SA, Hammer M, Kendall DM, Thornton PS (2022) Congenital hyperinsulinism in infancy and childhood: challenges, unmet needs and the perspective of patients and families. Orphanet J Rare Dis 17:61. https://doi.org/10.1186/s13023-022-02214-y
doi: 10.1186/s13023-022-02214-y
pubmed: 35183224
pmcid: 8858501
Welters A et al (2018) Characterization of diabetes following pancreatic surgery in patients with congenital hyperinsulinism. Orphanet J Rare Dis 13:230. https://doi.org/10.1186/s13023-018-0970-8
doi: 10.1186/s13023-018-0970-8
pubmed: 30577875
pmcid: 6304089
Easter G, Sharpe L, Hunt CJ (2015) Systematic review and meta-analysis of anxious and depressive symptoms in caregivers of children with asthma. J Pediatr Psychol 40:623–632. https://doi.org/10.1093/jpepsy/jsv012
doi: 10.1093/jpepsy/jsv012
pubmed: 25829528
Hatzmann J, Heymans HS, Ferrer-i-Carbonell A, van Praag BM, Grootenhuis MA (2008) Hidden consequences of success in pediatrics: parental health-related quality of life–results from the Care Project. Pediatrics 122:e1030-1038. https://doi.org/10.1542/peds.2008-0582
doi: 10.1542/peds.2008-0582
pubmed: 18852185
Besier T, Born A, Henrich G, Hinz A, Quittner AL, Goldbeck L, The TIDES Study Group (2011) Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatr Pulmonol 46:672–682. https://doi.org/10.1002/ppul.21423
doi: 10.1002/ppul.21423
Cohen MS (1999) Families coping with childhood chronic illness: a research review. Fam Syst Health 17:149. https://doi.org/10.1037/h0089879
doi: 10.1037/h0089879
Pinquart M (2019) Featured article: Depressive symptoms in parents of children with chronic health conditions: a meta-analysis. J Pediatr Psychol 44:139–149. https://doi.org/10.1093/jpepsy/jsy075
doi: 10.1093/jpepsy/jsy075
pubmed: 30346613
Spitzer RL, Kroenke K, Williams JBW, Löwe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166:1092–1097. https://doi.org/10.1001/archinte.166.10.1092
doi: 10.1001/archinte.166.10.1092
pubmed: 16717171
Kroenke K, Strine TW, Spitzer RL, Williams JBW, Berry JT, Mokdad AH (2009) The PHQ-8 as a measure of current depression in the general population. J Affect Disord 114:163–173. https://doi.org/10.1016/j.jad.2008.06.026
doi: 10.1016/j.jad.2008.06.026
pubmed: 18752852
Kroenke K, Spitzer RL (2002) The PHQ-9: a new depression diagnostic and severity measure. Psychiatr Ann 32:509–515. https://doi.org/10.3928/0048-5713-20020901-06
doi: 10.3928/0048-5713-20020901-06
Goldbeck L, Storck M (2002) Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE). Z Klin Psychol Psychother 31:31–39. https://doi.org/10.1026/0084-5345.31.1.31
doi: 10.1026/0084-5345.31.1.31
Ravens-Sieberer U, Morfeld M, Stein RE, Jessop DJ, Bullinger M, Thyen U (2001) The testing and validation of the German version of the impact on family scale in families with children with disabilities. Psychother Psychosom Med Psychol 51:384–393. https://doi.org/10.1055/s-2001-16899
doi: 10.1055/s-2001-16899
pubmed: 11533885
Hinz A, Klein AM, Brahler E, Glaesmer H, Luck T, Riedel-Heller SG, Wirkner K, Hilbert A (2017) Psychometric evaluation of the Generalized Anxiety Disorder Screener GAD-7, based on a large German general population sample. J Affect Disord 210:338–344. https://doi.org/10.1016/j.jad.2016.12.012
doi: 10.1016/j.jad.2016.12.012
pubmed: 28088111
Hapke U, Cohrdes C, Nübel J (2019) Depressive symptoms in a European comparison–Results from the European Health Interview Survey (EHIS) 2. J Health Monit 4. https://doi.org/10.25646/6227
van Oers HA, Haverman L, Limperg PF, van Dijk-Lokkart EM, Maurice-Stam H, Grootenhuis MA (2014) Anxiety and depression in mothers and fathers of a chronically ill child. Matern Child Health J 18:1993–2002. https://doi.org/10.1007/s10995-014-1445-8
doi: 10.1007/s10995-014-1445-8
pubmed: 24791971
Quittner AL et al (2014) Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax 69:1090–1097. https://doi.org/10.1136/thoraxjnl-2014-205983
doi: 10.1136/thoraxjnl-2014-205983
pubmed: 25246663
Scherer N, Verhey I, Kuper H (2019) Depression and anxiety in parents of children with intellectual and developmental disabilities: a systematic review and meta-analysis. PLoS ONE 14:e0219888. https://doi.org/10.1371/journal.pone.0219888
doi: 10.1371/journal.pone.0219888
pubmed: 31361768
pmcid: 6667144
Singer GH (2006) Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. Am J Ment Retard 111:155–169. https://doi.org/10.1352/0895-8017(2006)111[155:MOCSOD]2.0.CO;2
doi: 10.1352/0895-8017(2006)111[155:MOCSOD]2.0.CO;2
pubmed: 16597183
Vonneilich N, Ludecke D, Kofahl C (2016) The impact of care on family and health-related quality of life of parents with chronically ill and disabled children. Disabil Rehabil 38:761–767. https://doi.org/10.3109/09638288.2015.1060267
doi: 10.3109/09638288.2015.1060267
pubmed: 26100508
Yilmaz O, Sogut A, Gulle S, Can D, Ertan P, Yuksel H (2008) Sleep quality and depression-anxiety in mothers of children with two chronic respiratory diseases: asthma and cystic fibrosis. J Cyst Fibros 7:495–500. https://doi.org/10.1016/j.jcf.2008.05.002
doi: 10.1016/j.jcf.2008.05.002
pubmed: 18585104
Wiedebusch S, Konrad M, Foppe H, Reichwald-Klugger E, Schaefer F, Schreiber V, Muthny FA (2010) Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol 25:1477–1485. https://doi.org/10.1007/s00467-010-1540-z
doi: 10.1007/s00467-010-1540-z
pubmed: 20461533
Fidika A, Salewski C, Goldbeck L (2013) Quality of life among parents of children with phenylketonuria (PKU). Health Qual Life Outcomes 11:54. https://doi.org/10.1186/1477-7525-11-54
doi: 10.1186/1477-7525-11-54
pubmed: 23537423
pmcid: 3626680
Kuhlthau KA, Perrin JM (2001) Child health status and parental employment. Arch Pediatr Adolesc Med 155:1346–1350. https://doi.org/10.1001/archpedi.155.12.1346
doi: 10.1001/archpedi.155.12.1346
pubmed: 11732954
Kish AM, Newcombe PA, Haslam DM (2018) Working and caring for a child with chronic illness: a review of current literature. Child Care Health Dev 44:343–354. https://doi.org/10.1111/cch.12546
doi: 10.1111/cch.12546
pubmed: 29341191
Hatzmann J, Peek N, Heymans H, Maurice-Stam H, Grootenhuis M (2014) Consequences of caring for a child with a chronic disease: employment and leisure time of parents. J Child Health Care 18:346–357. https://doi.org/10.1177/1367493513496668
doi: 10.1177/1367493513496668
pubmed: 23990657
Warfield ME (2001) Employment, parenting, and well-being among mothers of children with disabilities. Ment Retard 39:297–309. https://doi.org/10.1352/0047-6765(2001)039%3c0297:EPAWBA%3e2.0.CO;2
doi: 10.1352/0047-6765(2001)039<0297:EPAWBA>2.0.CO;2
pubmed: 11448252
Thyen U, Kuhlthau K, Perrin JM (1999) Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics 103:1235–1242. https://doi.org/10.1542/peds.103.6.1235
doi: 10.1542/peds.103.6.1235
pubmed: 10353935
Boyden JY, Hill DL, Carroll KW, Morrison WE, Miller VA, Feudtner C (2020) The association of perceived social support with anxiety over time in parents of children with serious illnesses. J Palliat Med 23:527–534. https://doi.org/10.1089/jpm.2019.0387
doi: 10.1089/jpm.2019.0387
pubmed: 31697175
pmcid: 7364310
Dockerty JD, Williams SM, McGee R, Skegg DC (2000) Impact of childhood cancer on the mental health of parents. Med Pediatr Oncol 35:475–483. https://doi.org/10.1002/1096-911x(20001101)35:5%3c475::aid-mpo6%3e3.0.co;2-u
doi: 10.1002/1096-911x(20001101)35:5<475::aid-mpo6>3.0.co;2-u
pubmed: 11070480
Bartlett SJ, Krishnan JA, Riekert KA, Butz AM, Malveaux FJ, Rand CS (2004) Maternal depressive symptoms and adherence to therapy in inner-city children with asthma. Pediatrics 113:229–237. https://doi.org/10.1542/peds.113.2.229
doi: 10.1542/peds.113.2.229
pubmed: 14754931
Quittner AL et al (2016) International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety. Thorax 71:26–34. https://doi.org/10.1136/thoraxjnl-2015-207488
doi: 10.1136/thoraxjnl-2015-207488
pubmed: 26452630
Barakat LP, Patterson CA, Weinberger BS, Simon K, Gonzalez ER, Dampier C (2007) A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease. J Pediatr Hematol Oncol 29:752–760. https://doi.org/10.1097/MPH.0b013e318157fdac
doi: 10.1097/MPH.0b013e318157fdac
pubmed: 17984693
Mannisto JME, Jaaskelainen J, Huopio H (2019) Health-related quality of life in children with congenital hyperinsulinism. Front Endocrinol (Lausanne) 10:670. https://doi.org/10.3389/fendo.2019.00670
doi: 10.3389/fendo.2019.00670
Reinauer C et al (2021) Efficacy of motivational interviewing to improve utilization of mental health services among youths with chronic medical conditions: a cluster randomized clinical trial. JAMA Netw Open 4:e2127622. https://doi.org/10.1001/jamanetworkopen.2021.27622
doi: 10.1001/jamanetworkopen.2021.27622
pubmed: 34596672
pmcid: 8486984