title: Quality of life among parents of children with phenylketonuria (PKU).
abstract: BACKGROUND
  Parents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent's QoL. So far, there has been little research on parents who have a child with phenylketonuria (PKU). This study was designed to evaluate the parental quality of life (PQoL) of parents of children and adolescents who have PKU and identify possible predictors of PQoL.
  
  
  METHODS
  In this cross-sectional study 89 parents completed self-report measures of PQoL, family stress, social support, and parental coping. To determine the impact of these potential predictors on PQoL, regression and mediation analyses were performed.
  
  
  RESULTS
  Most parents coped well with their children's metabolic disorder. Family stress (β = -0.42; p < 0.001) and perceived social support (β = 0.33; p = 0.001) were proven to be the most powerful predictors, accounting together for 45% of the variance of PQoL. Social support mediated the association between family stress and PQoL.
  
  
  CONCLUSIONS
  The current study indicates that parents of younger children are an especially vulnerable group. Members of health-care teams should be able to identify and empower vulnerable parents to seek and maintain social support.
authors.affiliation: Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm 89075, Germany. astrid.fidika@uniklinik-ulm.de
authors.forename: Astrid
authors.initials: A
authors.lastname: Fidika
authors.forename: Christel
authors.initials: C
authors.lastname: Salewski
authors.forename: Lutz
authors.initials: L
authors.lastname: Goldbeck
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers; D002648:Child; D003430:Cross-Sectional Studies; D019988:Children with Disabilities / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010661:Phenylketonurias / Q000175:diagnosis*; D011788:Quality of Life / Q000523:psychology*; D012044:Regression Analysis; D057566:Self Report; D012944:Social Support; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology; D011795:Surveys and Questionnaires
references.citation: Health Qual Life Outcomes. 2009 Jul 28;7:72
references.pmid: 19638197
references.citation: Qual Life Res. 2003 Sep;12(6):655-66
references.pmid: 14516175
references.citation: Eur J Pediatr. 1999 Jan;158(1):46-54
references.pmid: 9950308
references.citation: J Child Psychol Psychiatry. 1998 Jan;39(1):29-46
references.pmid: 9534085
references.citation: Pediatrics. 2001 Oct;108(4):972-82
references.pmid: 11581453
references.citation: Arch Pediatr Adolesc Med. 1998 Jul;152(7):665-71
references.pmid: 9667538
references.citation: J Intellect Dev Disabil. 2006 Mar;31(1):53-7
references.pmid: 16766323
references.citation: J Pediatr Psychol. 2001 Apr-May;26(3):155-62
references.pmid: 11259517
references.citation: Nat Biotechnol. 2008 Aug;26(8):897-9
references.pmid: 18688245
references.citation: Qual Life Res. 2006 Sep;15(7):1121-31
references.pmid: 16972156
references.citation: Qual Life Res. 2005 Dec;14(10):2235-45
references.pmid: 16328903
references.citation: J Pers Soc Psychol. 1990 Dec;59(6):1266-78
references.pmid: 2283593
references.citation: J Cyst Fibros. 2011 Dec;10(6):435-42
references.pmid: 21782529
references.citation: Thorax. 1998 Sep;53(9):727-31
references.pmid: 10319053
references.citation: Qual Life Res. 2005 Oct;14(8):1915-24
references.pmid: 16155778
references.citation: J Inherit Metab Dis. 2011 Apr;34(2):391-8
references.pmid: 21290186
references.citation: J Inherit Metab Dis. 2005;28(5):639-49
references.pmid: 16151894
references.citation: Pediatrics. 2008 Nov;122(5):e1030-8
references.pmid: 18852185
references.citation: J Pediatr Psychol. 2009 Mar;34(2):129-36
references.pmid: 18577543
references.citation: Behav Res Methods Instrum Comput. 2004 Nov;36(4):717-31
references.pmid: 15641418
references.citation: J Pers Soc Psychol. 1986 Dec;51(6):1173-82
references.pmid: 3806354
references.citation: Neuropsychol Rev. 2007 Jun;17(2):91-101
references.pmid: 17410469
references.citation: Health Qual Life Outcomes. 2008 Nov 03;6:91
references.pmid: 18980676
references.citation: Med Care. 1980 Apr;18(4):465-72
references.pmid: 7401703
references.citation: Klin Padiatr. 2009 Jul-Aug;221(4):241-6
references.pmid: 19629902
references.citation: Ann Hum Genet. 2008 Jan;72(Pt 1):65-71
references.pmid: 18184144
references.citation: Psychother Psychosom Med Psychol. 2001 Sep-Oct;51(9-10):384-93
references.pmid: 11533885
references.citation: Pediatr Pulmonol. 2011 Jul;46(7):672-82
references.pmid: 21384564