Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma
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Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma. / Silva, N; Crespo, C; Carona, C; Bullinger-Naber, Monika; Canavarro, M C.
In: CHILD CARE HLTH DEV, Vol. 41, No. 1, 01.01.2015, p. 112-121.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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TY - JOUR
T1 - Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma
AU - Silva, N
AU - Crespo, C
AU - Carona, C
AU - Bullinger-Naber, Monika
AU - Canavarro, M C
N1 - © 2014 John Wiley & Sons Ltd.
PY - 2015/1/1
Y1 - 2015/1/1
N2 - BACKGROUND: Children's health-related quality of life (HrQoL) and psychological problems are important outcomes to consider in clinical decision making in paediatric asthma. However, children's and parents' reports often differ. The present study aimed to examine the levels of agreement/disagreement between children's and parents' reports of HrQoL and psychological problems and to identify socio-demographic, clinical and family variables associated with the extent and direction of (dis)agreement.METHODS: The sample comprised 279 dyads of Portuguese children with asthma who were between 8 and 18 years of age (M = 12.13; SD = 2.56) and one of their parents. The participants completed self- and proxy-reported questionnaires on paediatric generic HrQoL (KIDSCREEN-10), chronic-generic HrQoL (DISABKIDS-37) and psychological problems (Strengths and Difficulties Questionnaire). Children's and parents' perceptions of family relationships were measured with the Family Environment Scale and the caregiving burden was assessed using the Revised Burden Measure.RESULTS: The child-parent agreement on reported HrQoL and psychological problems was poor to moderate (intraclass correlation coefficients between 0.32 and 0.47). The rates of child-parent discrepancies ranged between 52.7% (psychological problems) and 68.8% (generic HrQoL), with 50.5% and 31.5% of the parents reporting worse generic and chronic-generic HrQoL, respectively, and 33.3% reporting more psychological problems than their children. The extent and direction of disagreement were better explained by family factors than by socio-demographic and clinical variables: a greater caregiving burden was associated with increased discrepancies in both directions and children's and parents' perceptions of less positive family relationships were associated with discrepancies in different directions.CONCLUSIONS: Routine assessment of paediatric HrQoL and psychological problems in healthcare and research contexts should include self- and parent-reported data as complementary sources of information, and also consider the family context. The additional cost of conducting a more in-depth assessment of paediatric adaptation outcomes can be offset through more efficient allocation of health resources.
AB - BACKGROUND: Children's health-related quality of life (HrQoL) and psychological problems are important outcomes to consider in clinical decision making in paediatric asthma. However, children's and parents' reports often differ. The present study aimed to examine the levels of agreement/disagreement between children's and parents' reports of HrQoL and psychological problems and to identify socio-demographic, clinical and family variables associated with the extent and direction of (dis)agreement.METHODS: The sample comprised 279 dyads of Portuguese children with asthma who were between 8 and 18 years of age (M = 12.13; SD = 2.56) and one of their parents. The participants completed self- and proxy-reported questionnaires on paediatric generic HrQoL (KIDSCREEN-10), chronic-generic HrQoL (DISABKIDS-37) and psychological problems (Strengths and Difficulties Questionnaire). Children's and parents' perceptions of family relationships were measured with the Family Environment Scale and the caregiving burden was assessed using the Revised Burden Measure.RESULTS: The child-parent agreement on reported HrQoL and psychological problems was poor to moderate (intraclass correlation coefficients between 0.32 and 0.47). The rates of child-parent discrepancies ranged between 52.7% (psychological problems) and 68.8% (generic HrQoL), with 50.5% and 31.5% of the parents reporting worse generic and chronic-generic HrQoL, respectively, and 33.3% reporting more psychological problems than their children. The extent and direction of disagreement were better explained by family factors than by socio-demographic and clinical variables: a greater caregiving burden was associated with increased discrepancies in both directions and children's and parents' perceptions of less positive family relationships were associated with discrepancies in different directions.CONCLUSIONS: Routine assessment of paediatric HrQoL and psychological problems in healthcare and research contexts should include self- and parent-reported data as complementary sources of information, and also consider the family context. The additional cost of conducting a more in-depth assessment of paediatric adaptation outcomes can be offset through more efficient allocation of health resources.
U2 - 10.1111/cch.12147
DO - 10.1111/cch.12147
M3 - SCORING: Journal article
C2 - 24797724
VL - 41
SP - 112
EP - 121
JO - CHILD CARE HLTH DEV
JF - CHILD CARE HLTH DEV
SN - 0305-1862
IS - 1
ER -