Abstract:
AIMS:To investigate the differences in perception of quality of life between parents of chronically ill children and paediatricians at diagnosis and follow up. Quality of life was assessed using the (HUI3). METHODS:Longitudinal study (July 1999-January 2002) of 37 paediatricians and 181 parents of patients (children aged 1-17 years) with cystic fibrosis admitted for a pneumonia or patients with newly diagnosed acute lymphatic leukaemia, juvenile idiopathic arthritis, or asthma. Main outcome measure was percentage agreement on the attributes of the HUI3 between parents and paediatricians. RESULTS:Differences in perception of health and wellbeing between paediatricians and parents of children with a chronic disease were found, not only at diagnosis but also after a period of follow up. Differences were particularly clear in the subjective attributes emotion (range of agreement 28-68%) and pain/discomfort (range of agreement 11-33%). In all patient groups, at baseline and follow up, the paediatrician assessed the patient to have less pain/discomfort in comparison to the parents. Despite a prolonged patient- paediatrician relationship, differences at follow up did not decrease compared to baseline. CONCLUSION:At the onset of a chronic disease, but also after a period of follow up, quality of life of paediatric patients may be misunderstood by healthcare professionals, especially in the subjective attributes. Systematic assessment of quality of life may contribute to better understanding between physicians and parents.
journal_name
Arch Dis Childjournal_title
Archives of disease in childhoodauthors
Janse AJ,Sinnema G,Uiterwaal CS,Kimpen JL,Gemke RJdoi
10.1136/adc.2004.051722subject
Has Abstractpub_date
2005-05-01 00:00:00pages
486-91issue
5eissn
0003-9888issn
1468-2044pii
90/5/486journal_volume
90pub_type
杂志文章abstract::The availability of resource (staffing and services) in all 21 paediatric diabetes services in Yorkshire and Humber Strategic Health Authority, UK was surveyed and this information was combined with demographic and clinical data on 2683 children and young people with diabetes (aged 0-23 years) to assess whether level ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
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abstract::Two neonates with spontaneous rupture of the bladder and an otherwise normal genitourinary tract are described. Conservative management resulted in complete resolution of the lesion in one but the other child died from a coliform septicaemia. Necropsy showed a discrete ischaemic lesion in the fundus of the bladder. ...
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.52.2.105
更新日期:1977-02-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.66.5.603
更新日期:1991-05-01 00:00:00
abstract:RATIONALE:Accurate weight measurements are essential for both growth monitoring and drug dose calculations in children. Weight can be accurately measured using calibrated scales in resource-rich settings; however, reliable scales are often not available in resource-poor regions or emergency situations. Current age and/...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2015-309645
更新日期:2017-01-01 00:00:00
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journal_title:Archives of disease in childhood
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更新日期:2000-11-01 00:00:00
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pub_type: 杂志文章,评审
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更新日期:2017-07-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.66.12.1421
更新日期:1991-12-01 00:00:00
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pub_type: 杂志文章,多中心研究
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更新日期:2002-05-01 00:00:00
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更新日期:2012-01-01 00:00:00
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journal_title:Archives of disease in childhood
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更新日期:2015-03-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.66.7_spec_no.810
更新日期:1991-07-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.69.1.104
更新日期:1993-07-01 00:00:00
abstract::A total of 37 children with refractory wide-spread atopic eczema were treated with an antigen avoidance regimen comprising hospitalisation, exclusive feeding with an elemental formula for a median duration of 30 days, and measures to reduce exposure to pet and dust mite antigens at home. After the initial period of fo...
journal_title:Archives of disease in childhood
pub_type: 临床试验,杂志文章
doi:10.1136/adc.66.1.93
更新日期:1991-01-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.2006.110536
更新日期:2007-12-01 00:00:00
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pub_type: 杂志文章
doi:10.1136/adc.84.6.504
更新日期:2001-06-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.56.8.601
更新日期:1981-08-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 临床试验,杂志文章,随机对照试验
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更新日期:1992-06-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 临床试验,杂志文章
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更新日期:1996-03-01 00:00:00
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pub_type: 杂志文章
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更新日期:1989-04-01 00:00:00
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pub_type: 杂志文章
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pub_type: 杂志文章,多中心研究
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更新日期:2010-05-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.2007.126144
更新日期:2008-02-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.70.4.264
更新日期:1994-04-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.64.7.1055
更新日期:1989-07-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.79.5.440
更新日期:1998-11-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章,多中心研究
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更新日期:2009-12-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.65.5.486
更新日期:1990-05-01 00:00:00
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journal_title:Archives of disease in childhood
pub_type: 杂志文章,评审
doi:10.1136/adc.2009.180000
更新日期:2011-08-01 00:00:00
abstract::Fine needle aspiration biopsy (FNAB) offers a simple outpatient technique for specimen collection in child tuberculosis suspects with peripheral lymphadenopathy. To perform FNAB with mycobacterial culture on an outpatient basis requires use of a sterile transport medium to facilitate bedside inoculation, maintain orga...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.2009.164038
更新日期:2010-01-01 00:00:00