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Volumn 11, Issue 1, 2013, Pages

Quality of life among parents of children with phenylketonuria (PKU)

Author keywords

Metabolic disorder; Parents; PKU; Quality of life; Social support

Indexed keywords

ADULT; ARTICLE; COPING BEHAVIOR; CROSS-SECTIONAL STUDY; FAMILY STRESS; FEMALE; HUMAN; MALE; PARENT; PARENTAL QUALITY OF LIFE; PHENYLKETONURIA; QUALITY OF LIFE; SOCIAL SUPPORT;

EID: 84875288930     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-11-54     Document Type: Article
Times cited : (63)

References (36)
  • 2
    • 0034790129 scopus 로고    scopus 로고
    • National institutes of health consensus development conference statement: phenylketonuria: screening and management, October 16-18, 2000
    • National Institutes of Health Consensus Development Panel
    • National Institutes of Health Consensus Development Panel National institutes of health consensus development conference statement: phenylketonuria: screening and management, October 16-18, 2000. Pediatrics 2001, 108:972-982. National Institutes of Health Consensus Development Panel.
    • (2001) Pediatrics , vol.108 , pp. 972-982
  • 3
    • 0033003339 scopus 로고    scopus 로고
    • Rationale for the German recommendations for phenylalanine level control in phenylketonuria 1997
    • 10.1007/s004310051008, 9950308
    • Burgard P, Bremer HJ, Bührdel P, Clemens PC, Mönch E, Przyrembel H, Trefz FK, Ullrich K. Rationale for the German recommendations for phenylalanine level control in phenylketonuria 1997. Eur J Pediatr 1999, 158:46-54. 10.1007/s004310051008, 9950308.
    • (1999) Eur J Pediatr , vol.158 , pp. 46-54
    • Burgard, P.1    Bremer, H.J.2    Bührdel, P.3    Clemens, P.C.4    Mönch, E.5    Przyrembel, H.6    Trefz, F.K.7    Ullrich, K.8
  • 4
    • 34250023212 scopus 로고    scopus 로고
    • Metaanalysis of neuropsychological symptoms of adolescents and adults with PKU
    • 10.1007/s11065-007-9021-2, 17410469
    • Moyle JJ, Fox AM, Bynevelt M, Burnett JR. Metaanalysis of neuropsychological symptoms of adolescents and adults with PKU. Neuropsychol Rev 2007, 17:91-101. 10.1007/s11065-007-9021-2, 17410469.
    • (2007) Neuropsychol Rev , vol.17 , pp. 91-101
    • Moyle, J.J.1    Fox, A.M.2    Bynevelt, M.3    Burnett, J.R.4
  • 5
    • 84951062161 scopus 로고    scopus 로고
    • Parenting chronically ill children - the scope and impact of pediatric parenting stress
    • London: London, Hoghughi MS, Long N
    • Streisand R, Tercyak KP. Parenting chronically ill children - the scope and impact of pediatric parenting stress. Handbook of parenting 2004, 181-197. London: London, Hoghughi MS, Long N.
    • (2004) Handbook of parenting , pp. 181-197
    • Streisand, R.1    Tercyak, K.P.2
  • 6
    • 22544444924 scopus 로고    scopus 로고
    • Parents reactions to childhood phenylketonuria
    • Lord B, Wastell C, Ungerer J. Parents reactions to childhood phenylketonuria. Fam Syst Health 2005, 23:204-219.
    • (2005) Fam Syst Health , vol.23 , pp. 204-219
    • Lord, B.1    Wastell, C.2    Ungerer, J.3
  • 7
    • 0032975603 scopus 로고    scopus 로고
    • Families coping with childhood chronic illness: a research review
    • Cohen MS. Families coping with childhood chronic illness: a research review. Fam Syst Health 1999, 17(2):149-164.
    • (1999) Fam Syst Health , vol.17 , Issue.2 , pp. 149-164
    • Cohen, M.S.1
  • 8
    • 0036269553 scopus 로고    scopus 로고
    • Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE): Entwicklung und psychometrische Eigenschaften. [ULQIE: A quality-of-life inventory for parents of chronically ill children.]
    • Goldbeck L, Storck M. Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE): Entwicklung und psychometrische Eigenschaften. [ULQIE: A quality-of-life inventory for parents of chronically ill children.]. Z Klin Psychol Psychother 2002, 31:31-39.
    • (2002) Z Klin Psychol Psychother , vol.31 , pp. 31-39
    • Goldbeck, L.1    Storck, M.2
  • 9
    • 33750601503 scopus 로고    scopus 로고
    • The impact of newly diagnosed chronic paediatric conditions on parental quality of life
    • 10.1007/s11136-006-0068-y, 16972156
    • Goldbeck L. The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 2006, 15:1121-1131. 10.1007/s11136-006-0068-y, 16972156.
    • (2006) Qual Life Res , vol.15 , pp. 1121-1131
    • Goldbeck, L.1
  • 10
    • 58149154254 scopus 로고    scopus 로고
    • Hidden consequences of success in pediatrics: parental health-related quality of life-results from the Care Project
    • 10.1542/peds.2008-0582, 18852185
    • Hatzmann J, Heymans HSA, Ferrer-i-Carbonell A, van Praag BMS, Grootenhuis MA. Hidden consequences of success in pediatrics: parental health-related quality of life-results from the Care Project. Pediatrics 2008, 122:e1030-e1038. 10.1542/peds.2008-0582, 18852185.
    • (2008) Pediatrics , vol.122
    • Hatzmann, J.1    Heymans, H.S.A.2    Ferrer-i-Carbonell, A.3    van Praag, B.M.S.4    Grootenhuis, M.A.5
  • 11
    • 0041829239 scopus 로고    scopus 로고
    • Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children
    • 10.1023/A:1025114331419, 14516175
    • Lawoko S, Soares JJF. Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 2003, 12:655-666. 10.1023/A:1025114331419, 14516175.
    • (2003) Qual Life Res , vol.12 , pp. 655-666
    • Lawoko, S.1    Soares, J.J.F.2
  • 12
    • 57249084640 scopus 로고    scopus 로고
    • Quality of life among parents of children with heart disease
    • 10.1186/1477-7525-6-91, 2590598, 18980676
    • Arafa M, Zaher S, El-Dowaty A, Moneeb D. Quality of life among parents of children with heart disease. Health Qual Life Outcomes 2008, 6:91. 10.1186/1477-7525-6-91, 2590598, 18980676.
    • (2008) Health Qual Life Outcomes , vol.6 , pp. 91
    • Arafa, M.1    Zaher, S.2    El-Dowaty, A.3    Moneeb, D.4
  • 13
    • 60749086271 scopus 로고    scopus 로고
    • Parent quality of life in the context of pediatric inflammatory bowel disease
    • Greenley RN, Cunningham C. Parent quality of life in the context of pediatric inflammatory bowel disease. J Pediatr Psychol 2009, 34:129-136.
    • (2009) J Pediatr Psychol , vol.34 , pp. 129-136
    • Greenley, R.N.1    Cunningham, C.2
  • 14
    • 27944500708 scopus 로고    scopus 로고
    • The Quality of Life of Parents of Children with Atopic Dermatitis: Interpretation of PIQoL-AD Scores
    • 10.1007/s11136-005-5433-8, 16328903
    • Meads DM, McKenna SP, Kahler K. The Quality of Life of Parents of Children with Atopic Dermatitis: Interpretation of PIQoL-AD Scores. Qual Life Res 2005, 14:2235-2245. 10.1007/s11136-005-5433-8, 16328903.
    • (2005) Qual Life Res , vol.14 , pp. 2235-2245
    • Meads, D.M.1    McKenna, S.P.2    Kahler, K.3
  • 17
    • 0031984571 scopus 로고    scopus 로고
    • Effects of pediatric chronic physical disorders on child and family adjustment
    • 10.1017/S0021963097001741, 9534085
    • Wallander JL, Varni JW. Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 1998, 39:29-46. 10.1017/S0021963097001741, 9534085.
    • (1998) J Child Psychol Psychiatry , vol.39 , pp. 29-46
    • Wallander, J.L.1    Varni, J.W.2
  • 18
    • 0031682139 scopus 로고    scopus 로고
    • Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity?
    • 10.1136/thx.53.9.727, 1745310, 10319053
    • Staab D, Wenninger K, Gebert N, Rupprath K, Bisson S, Trettin M, Paul KD, Keller KM, Wahn U. Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity?. Thorax 1998, 53:727-731. 10.1136/thx.53.9.727, 1745310, 10319053.
    • (1998) Thorax , vol.53 , pp. 727-731
    • Staab, D.1    Wenninger, K.2    Gebert, N.3    Rupprath, K.4    Bisson, S.5    Trettin, M.6    Paul, K.D.7    Keller, K.M.8    Wahn, U.9
  • 19
    • 0031746621 scopus 로고    scopus 로고
    • Parents's perceptions of helpful vs unhelpful types of support in managing the care of preadolescents with chronic conditions
    • Garwick AW, Patterson JM, Bennett FC, Blum RW. Parents's perceptions of helpful vs unhelpful types of support in managing the care of preadolescents with chronic conditions. Arch Pediatr Adolesc Med 1998, 152:665-671.
    • (1998) Arch Pediatr Adolesc Med , vol.152 , pp. 665-671
    • Garwick, A.W.1    Patterson, J.M.2    Bennett, F.C.3    Blum, R.W.4
  • 20
    • 0035149216 scopus 로고    scopus 로고
    • Hope and social support as resilience factors against psychological distress of mothers Who care for children with chronic physical conditions
    • Horton TV, Wallander JL. Hope and social support as resilience factors against psychological distress of mothers Who care for children with chronic physical conditions. Rehabil Psychol 2001, 46:382-399.
    • (2001) Rehabil Psychol , vol.46 , pp. 382-399
    • Horton, T.V.1    Wallander, J.L.2
  • 21
    • 69549129490 scopus 로고    scopus 로고
    • A predictive model of health related quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system
    • 10.1186/1477-7525-7-72, 2731060, 19638197
    • Hatzmann J, Maurice-Stam H, Heymans H, Grootenhuis M. A predictive model of health related quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system. Health Qual Life Outcomes 2009, 7:72. 10.1186/1477-7525-7-72, 2731060, 19638197.
    • (2009) Health Qual Life Outcomes , vol.7 , pp. 72
    • Hatzmann, J.1    Maurice-Stam, H.2    Heymans, H.3    Grootenhuis, M.4
  • 22
    • 25144483400 scopus 로고    scopus 로고
    • Living with phenylketonuria: perspectives of patients and their families
    • 10.1007/s10545-005-4478-8, 16151894
    • Bilginsoy C, Waitzman N, Leonard C, Ernst S. Living with phenylketonuria: perspectives of patients and their families. J Inherit Metab Dis 2005, 28:639-649. 10.1007/s10545-005-4478-8, 16151894.
    • (2005) J Inherit Metab Dis , vol.28 , pp. 639-649
    • Bilginsoy, C.1    Waitzman, N.2    Leonard, C.3    Ernst, S.4
  • 23
    • 0025669088 scopus 로고
    • Chronic parenting stress: moderating versus mediating effects of social support
    • Quittner AL, Glueckauf RL, Jackson DN. Chronic parenting stress: moderating versus mediating effects of social support. J Pers Soc Psychol 1990, 59:1266-1278.
    • (1990) J Pers Soc Psychol , vol.59 , pp. 1266-1278
    • Quittner, A.L.1    Glueckauf, R.L.2    Jackson, D.N.3
  • 24
    • 0034821453 scopus 로고    scopus 로고
    • Der familien-belastungs-fragebogen (FaBel-fragebogen). testung und validierung der deutschen version der " impact on family scale" bei familien mit behinderten kindern. [Testing and validation of the German version of the impact on family scale in families with children with disabilities]
    • 10.1055/s-2001-16899, 11533885
    • Ravens-Sieberer U, Morfeld M, Stein REK, Jessop DJ, Bullinger M, Thyen U. Der familien-belastungs-fragebogen (FaBel-fragebogen). testung und validierung der deutschen version der " impact on family scale" bei familien mit behinderten kindern. [Testing and validation of the German version of the impact on family scale in families with children with disabilities]. Psychother Psychosom Med Psychol 2001, 51:384-393. 10.1055/s-2001-16899, 11533885.
    • (2001) Psychother Psychosom Med Psychol , vol.51 , pp. 384-393
    • Ravens-Sieberer, U.1    Morfeld, M.2    Stein, R.E.K.3    Jessop, D.J.4    Bullinger, M.5    Thyen, U.6
  • 25
    • 0019190719 scopus 로고
    • The development of an impact-on-family-scale: preliminary findings
    • 10.1097/00005650-198004000-00010, 7401703
    • Stein REK, Riessman CK. The development of an impact-on-family-scale: preliminary findings. Medical Care 1980, 18(4):465-472. 10.1097/00005650-198004000-00010, 7401703.
    • (1980) Medical Care , vol.18 , Issue.4 , pp. 465-472
    • Stein, R.E.K.1    Riessman, C.K.2
  • 27
    • 0003008772 scopus 로고    scopus 로고
    • Fragebogen zur elterlichen krankheitsbewältigung: coping health inventory for parents (CHIP) - deutsche version
    • McCubbin HI, McCubbin MA, Cauble E, Goldbeck L. Fragebogen zur elterlichen krankheitsbewältigung: coping health inventory for parents (CHIP) - deutsche version. Kindheit und Entwicklung 2001, 10(1):28-35.
    • (2001) Kindheit und Entwicklung , vol.10 , Issue.1 , pp. 28-35
    • McCubbin, H.I.1    McCubbin, M.A.2    Cauble, E.3    Goldbeck, L.4
  • 29
    • 49449098182 scopus 로고    scopus 로고
    • Do, Serafim Batzoglou: What is the expectation maximization algorithm?
    • 10.1038/nbt1406, 18688245
    • Chuong B. Do, Serafim Batzoglou: What is the expectation maximization algorithm?. Nat Biotechnol 2008, 26:897-899. 10.1038/nbt1406, 18688245.
    • (2008) Nat Biotechnol , vol.26 , pp. 897-899
    • Chuong, B.1
  • 30
    • 79959814346 scopus 로고    scopus 로고
    • Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis
    • 10.1002/ppul.21423, 21384564, TIDES Study Group
    • Besier T, Born A, Henrich G, Hinz A, Quittner AL, Goldbeck L, TIDES Study Group Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatr Pulmonol 2011, 46:672-82. 10.1002/ppul.21423, 21384564, TIDES Study Group.
    • (2011) Pediatr Pulmonol , vol.46 , pp. 672-682
    • Besier, T.1    Born, A.2    Henrich, G.3    Hinz, A.4    Quittner, A.L.5    Goldbeck, L.6
  • 31
    • 81455141441 scopus 로고    scopus 로고
    • Anxiety and depression in adolescents with CF and their caregivers
    • 10.1016/j.jcf.2011.06.012, 21782529
    • Besier T, Goldbeck L. Anxiety and depression in adolescents with CF and their caregivers. J Cyst Fibros 2011, 10:435-42. 10.1016/j.jcf.2011.06.012, 21782529.
    • (2011) J Cyst Fibros , vol.10 , pp. 435-442
    • Besier, T.1    Goldbeck, L.2
  • 32
    • 13844271275 scopus 로고    scopus 로고
    • SPSS and SAS procedures for estimating indirect effects in simple mediation models
    • 10.3758/BF03206553, 15641418
    • Preacher KJ, Hayes AF. SPSS and SAS procedures for estimating indirect effects in simple mediation models. Behav Res Methods Instrum Comput 2004, 36:717-731. 10.3758/BF03206553, 15641418.
    • (2004) Behav Res Methods Instrum Comput , vol.36 , pp. 717-731
    • Preacher, K.J.1    Hayes, A.F.2
  • 33
    • 0023020183 scopus 로고
    • The moderator-mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations
    • Baron RM, Kenny DA. The moderator-mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations. J Pers Soc Psychol 1986, 51:1173-1182.
    • (1986) J Pers Soc Psychol , vol.51 , pp. 1173-1182
    • Baron, R.M.1    Kenny, D.A.2
  • 34
    • 70350717102 scopus 로고    scopus 로고
    • Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children
    • 10.1055/s-0029-1216364, 19629902
    • West CA, Besier T, Borth-Bruhns T, Goldbeck L. Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children. Klin Padiatr 2009, 221:241-246. 10.1055/s-0029-1216364, 19629902.
    • (2009) Klin Padiatr , vol.221 , pp. 241-246
    • West, C.A.1    Besier, T.2    Borth-Bruhns, T.3    Goldbeck, L.4
  • 35
    • 33645104247 scopus 로고    scopus 로고
    • Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy
    • 10.1080/13668250600561929, 16766323
    • Skok A, Harvey D, Reddihough D. Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. J Intellect Dev Disabil 2006, 31:53-57. 10.1080/13668250600561929, 16766323.
    • (2006) J Intellect Dev Disabil , vol.31 , pp. 53-57
    • Skok, A.1    Harvey, D.2    Reddihough, D.3
  • 36
    • 24644514517 scopus 로고    scopus 로고
    • Quality of life in families of children with congenital heart disease
    • 10.1007/s11136-005-4327-0, 16155778
    • Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005, 14:1915-1924. 10.1007/s11136-005-4327-0, 16155778.
    • (2005) Qual Life Res , vol.14 , pp. 1915-1924
    • Goldbeck, L.1    Melches, J.2


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