Quality of Life in Parents of Children With Biliary Atresia.
Journal
Journal of pediatric gastroenterology and nutrition
ISSN: 1536-4801
Titre abrégé: J Pediatr Gastroenterol Nutr
Pays: United States
ID NLM: 8211545
Informations de publication
Date de publication:
11 2020
11 2020
Historique:
entrez:
23
10
2020
pubmed:
24
10
2020
medline:
22
6
2021
Statut:
ppublish
Résumé
The aim of the study was to determine quality of life (QoL), stress, and anxiety levels in parents of children with biliary atresia (BA), and to assess factors associated with parental QoL. Parents of children (6-16 years) with BA were included in this cross-sectional study. We used validated questionnaires to assess parental QoL, stress, and anxiety levels. We compared the results with reference data from the general population and determined associated factors using generalized linear mixed model analysis. Results are given as mean ± SD or median [min-max]. We included 61 parents of 39 children (aged 11 ± 3 years). Thirty-one children (79%) had undergone a liver transplantation (LTx). Parents reported reduced family activities (88 [8-100] vs 95 [30-100], P = 0.002) and more emotional worry (83 [17-100] vs 92 [95-100], P < 0.001) compared with reference data, but a stronger family cohesion (85 [30-100] vs 60 [30-100], P = 0.05). Scores on parental QoL, anxiety and stress were similar to reference data. Fathers (16.0 [11-19]) and mothers (15.4 ± 1.4) scored higher on the psychological domain compared with reference data (vs 14.7 ± 2.2, P < 0.01). There was no significant difference in QoL of parents with children with native liver or those who had undergone LTx. Older age and high anxiety trait in parents were adversely associated with physical QoL. Household income below &OV0556;35 000/year and high anxiety trait were adversely associated with environmental QoL. QoL in parents of school-aged children with BA appears to be unaffected. Parents with high-anxiety personality trait, older age, and low household income are at increased risk of impaired QoL.
Identifiants
pubmed: 33093371
doi: 10.1097/MPG.0000000000002858
pii: 00005176-202011000-00011
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
641-646Références
Golics CJ, Basra MKA, Finlay AY, et al. The impact of disease on family members: a critical aspect of medical care. J R Soc Med 2013; 106:399–407.
Pinquart M. Parenting stress in caregivers of children with chronic physical condition—a meta-analysis. Stress Heal 2018; 34:197–207.
Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol 2013; 38:809–828.
Lisanti AJ, Allen LR, Kelly L, et al. Maternal stress and anxiety in the pediatric cardiac intensive care unit. Am J Crit Care 2017; 26:118–125.
Fredericks EM, Lopez MJ, Magee JC, et al. Psychological functioning, nonadherence and health outcomes after pediatric liver transplantation. Am J Transplant 2007; 7:1974–1983.
Cousino MK, Rea KE, Schumacher KR, et al. A systematic review of parent and family functioning in pediatric solid organ transplant populations. Pediatr Transplant 2017; 21: 10.1111/petr.12900.
doi: 10.1111/petr.12900
The World Health Organization Quality of Life (WHOQOL) Group. Development of the WHOQOL: rationale and current status. Int J Ment Health 1994; 23:24–56.
Parmar A, Vandriel SM, Ng VL. Health-related quality of life after pediatric liver transplantation: a systematic review. Liver Transplant 2017; 23:361–374.
Limbers CA, Neighbors K, Martz K, et al. Studies of Pediatric Liver Transplantation Functional Outcomes Group. Health-related quality of life in pediatric liver transplant recipients compared with other chronic disease groups. Pediatr Transplant 2011; 15:245–253.
Konidis SV, Hrycko A, Nightingale S, et al. Health-related quality of life in long-term survivors of paediatric liver transplantation. Paediatr Child Heal 2015; 20:189–194.
Alonso EM, Neighbors K, Barton FB, et al. Health-related quality of life and family function following pediatric liver transplantation. Liver Transplant 2008; 14:460–468.
Sundaram SS, Alonso EM, Haber B, et al. Childhood Liver Disease Research and Education Network (ChiLDREN). Health related quality of life in patients with biliary atresia surviving with their native liver. J Pediatr 2013; 163:1052–1057.
De Vries W, De Langen ZJ, Groen H, et al. Biliary atresia in the Netherlands: outcome of patients diagnosed between 1987 and 2008. J Pediatr 2012; 160:638–644.
Centraal Bureau voor de Statistiek (CBS) Den Haag. Standaard Onderwijsindeling 2006.
De Vries J, Den Oudsten B. Handleiding WHOQOL- 100 en WHOQOL-BREF. Herziene versie [Manual WHOQOL- 100 and WHOQOL-BREF. Revised version]. Tilburg: Department of Medical and Clinical Psychology, Tilburg University; 2015.
Power M, Kuyken W. World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998; 46:1569–1585.
De Vries J, Van Heck GL. The World Health Organization Quality of Life Assessment Instrument (WHOQOL-100): validation study with the Dutch version. Eur J Psychol Assess 1997; 13:164–178.
Skevington SM, Lotfy M, O’Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial a Report from the WHOQOL Group. Qual Life Res 2004; 13:299–310.
Spielberger C. Manual for the State-Trait Anxiety Inventory. Palo Alto (CA): Consulting Psychologists Press; 1983.
Tluczek A, Henriques JB, Brown RL. Support for the reliability and validity of a six-item state anxiety scale derived from the state-trait anxiety inventory. J Nurs Meas 2009; 17:19–28.
Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav 1983; 24:385–396.
Cohen S. Perceived Stress Scale. Mind Garden. 1994.
Taylor JM. Psychometric analysis of the ten-item perceived stress scale. Psychol Assess 2015; 27:90–101.
Wulffraat N, Van Der Net JJ, Ruperto N, et al. Paediatric Rheumatology International Trials Organisation. The Dutch version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol 2001; 19: (4 Suppl 23): S111–S115.
Rodijk LH, Schins EMW, Witvliet MJ, et al. Health-related quality of life in biliary atresia patients with native liver or transplantation. Eur J Pediatr Surg 2020; 30:261–272.
Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap)-A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42:377–381.
Bowden MR, Stormon M, Hardikar W, et al. Family adjustment and parenting stress when an infant has serious liver disease: the Australian experience. J Pediatr Gastroenterol Nutr 2015; 60:717–722.
Cabizuca M, Marques-Portella C, Mendlowicz MV, et al. Posttraumatic stress disorder in parents of children with chronic illnesses: a meta-analysis. Heal Psychol 2009; 28:379–388.
Dobbels F. Tailoring support to the individual parent of a pediatric transplant recipient. Pediatr Transplant 2007; 11:699–701.
Simons L, Ingerski LM, Janicke DM. Social support, coping, and psychological distress in mothers and fathers of pediatric transplant candidates: a pilot study. Pediatr Transplant 2007; 11:781–787.
Kosmach-Park B. The impact of liver transplantation on family functioning in pediatric recipients: can “healthy” families contribute to improved long-term survival? Pediatr Transplant 2013; 17:321–325.
Diederen K, Haverman L, Grootenhuis MA, et al. Parental Distress and quality of life in pediatric inflammatory bowel disease: implications for the outpatient clinic. J Pediatr Gastroenterol Nutr 2018; 66:630–636.
Schwartz CE, Andresen EM, Nosek MA, et al. Response shift theory: important implications for measuring quality of life in people with disability. Arch Phys Med Rehabil 2007; 88:529–536.
Weger M, Sandi C. High anxiety trait: a vulnerable phenotype for stress-induced depression. Neurosci Biobehav Rev 2018; 87:27–37.
Wiegner L, Hange D, Björkelund C, et al. Prevalence of perceived stress and associations to symptoms of exhaustion, depression and anxiety in a working age population seeking primary care - an observational study. BMC Fam Pract 2015; 16:38.