Parental quality of life in complex paediatric neurologic disorders of unknown aetiology.
Complex paediatric neurology (CPN) patients generally present with non-specific symptoms, such as developmental delay, impaired movement and epilepsy. The diagnostic trajectory in these disorders is usually complicated and long-lasting, and may be burdensome to the patients and their parents. Additionally, as caring for a chronically ill child can be stressful and demanding, parents of these patients may experience impaired health-related quality of life (HRQoL). This study aims to assess parental HRQoL and factors related to it in CPN. Physical and mental HRQoL of 120 parents was measured and compared to the general population using the SF-12 questionnaire. Parents also completed this questionnaire for the measurement of patient HRQoL. Additional questionnaires were used to measure parental uncertainty (Visual Analogue Scale) and worry phenomena (Penn State Worry Questionnaire), and to obtain socio-demographic data. A linear mixed model with random effect was used to investigate which of these variables were associated with parental HRQoL. As compared to the general population, HRQoL of these parents appeared diminished. Fathers showed both lowered physical (51.76, p < 0.05) and mental (49.41, p < 0.01) HRQoL, whereas mothers only showed diminished mental (46.46, p < 0.01) HRQoL. Patient HRQoL and parental worry phenomena were significantly correlated with overall and mental parental HRQoL. The reduction in parental mental HRQoL is alarming, also because children strongly rely on their parents and parental mental health is known to influence children's health. Awareness of these problems among clinicians, and supportive care if needed are important to prevent exacerbation of the problems.
Radboud University Medical Center, Radboud Institute for Health Sciences, Department for Health Evidence, Nijmegen, The Netherlands. Electronic address: Kirsten.vanNimwegen@radboudumc.nl.
K J M
KJ
van Nimwegen
Radboud University Medical Center, Radboud Institute for Health Sciences, Department for Health Evidence, Nijmegen, The Netherlands. Electronic address: wietske.kievit@radboudumc.nl.
W
W
Kievit
Radboud University Medical Center, Donders Centre for Neuroscience, Department for Health Evidence, Nijmegen, The Netherlands. Electronic address: gertjan.vanderwil@radboudumc.nl.
G J
GJ
van der Wilt
Radboud University Medical Center, Department of Neurology, Nijmegen, The Netherlands. Electronic address: jolanda.schieving@radboudumc.nl.
J H
JH
Schieving
Radboud University Medical Center, Department of Neurology, Nijmegen, The Netherlands. Electronic address: michel.willemsen@radboudumc.nl.
M A A P
MA
Willemsen
Radboud University Medical Center, Radboud Institute for Health Sciences, Department for Health Evidence, Nijmegen, The Netherlands. Electronic address: rogier.donders@radboudumc.nl.
A R T
AR
Donders
Radboud University Medical Center, Department of Medical Psychology, Nijmegen, The Netherlands. Electronic address: Chris.verhaak@radboudumc.nl.
C M
CM
Verhaak
Radboud University Medical Center, Radboud Institute for Health Sciences, Department for Health Evidence, Nijmegen, The Netherlands. Electronic address: janneke.grutters@radboudumc.nl.
J P C
JP
Grutters
D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002908:Chronic Disease / Q000523:psychology; D002658:Developmental Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires
Health-related quality of life; Mental quality of life; Paediatric neurology; Physical quality of life; SF-12