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Journal ArticleDOI

Adolescent-parent disagreement on health-related quality of life of food-allergic adolescents: who makes the difference?

01 Dec 2011-Allergy (Wiley-Blackwell)-Vol. 66, Iss: 12, pp 1580-1589

Summary (1 min read)

Jump to: [Background][Methods][Results] and [Conclusions]

Background

  • Food allergic adolescents are at highest risk for food allergy fatalities, which may be partly due to compromised self-management behaviour.
  • Such behaviour may be negatively influenced by conflictual situations caused by child-parent disagreement on the adolescent’s Health-Related Quality of Life (HRQL).
  • Comparisons of self- and parent-proxy-reported HRQL have never extensively been studied in food allergic adolescents.
  • Therefore, the aims of this study were to investigate disagreement in self- and parent-proxy-reported HRQL of food allergic adolescents and to investigate the influence of participant characteristics, illness expectations and perceptions on adolescent-parent disagreement.

Methods

  • Teenager Form (-TF) and -Parent Form (-PFA) of the Food Allergy Quality of Life Questionnaire , Food Allergy Independent Measure (FAIM) and BriefIllness Perception Questionnaire (Brief-IPQ) were sent to Dutch food allergic adolescents (13-17 years) and their parents.
  • ICCs, t-tests and Bland-Altman plots were used to examine adolescent-parent agreement.
  • Factors influencing agreement were studied (linear regression).

Results

  • Bland-Altman plots showed relevant differences (exceeding minimal important difference) for 64% of all adolescent-parent pairs.
  • Regression analysis showed that an older age of adolescents, poorer adolescent-reported illness comprehension (Brief-IPQ-TF, coherence) and higher adolescent-reported perceived disease severity (FAIM-TF) were associated with adolescent-parent disagreement on HRQL.

Conclusions

  • Adolescent-parent disagreement on HRQL was mainly determined by the adolescent’s rather than the parent’s perceptions and characteristics.
  • This may contribute to improved self-management of food allergic adolescents.
  • 4University Medical Centre Groningen, University of Groningen, Department of Pediatric Allergy and Pulmonology, Groningen, Netherlands.

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ORAL PRESENTATION Open Access
Adolescent-parent disagreement on health-
related quality of life in food allergic adolescents;
who makes the difference?
Jantina L van der Velde
1*
, Bertine MJ Flokstra-de Blok
2
, Ann Hamp
3
, Rebecca C Knibb
3
, Eric J Duiverman
4
,
Anthony EJ Dubois
1
From Food Allergy and Anaphylaxis Meeting 2011
Venice, Italy. 17-19 February 2011
Background
Food allergic adolescents are at highest risk for food
allergy fatalities, which may be partly due to compro-
mised self-management behaviour. Such behaviour may
be negatively influenced by conflictual situations cau sed
by child-parent disagreement on the adolescent s
Hea lth-Related Quality of Life (HRQL). Comparisons o f
self- and parent-proxy-repo rted HRQL have never
extensively been studied in food allergic adolescents.
Therefore, the aims of this study were to investigate dis-
agreement in se lf- and parent-proxy-reported HRQL of
food allergic adolescents and to inv estigate the influence
of participant characteristics, illness expectations and
perceptions on adolescent-parent disagreement.
Methods
Teenager Form (-TF) and -Parent Form ( -PFA) of the
Food Allergy Quality of Life Questionnaire (FAQLQ),
Food Allergy Independent Measure (FAIM) and Brief-
Illness Perception Questionnaire (Brief-IPQ) were sent
to Dutch food a llergic adolescents (13-17 years) and
their parents. ICCs, t- tests and Bland-Altman plots were
used to exa mine adole scent-parent agreement. Fa ctors
influencing agreement were studied (linear regression).
Results
Seventy ado lescent-parent p airs were included. There
was a moderate correlation (ICC=0.61, p<0.001) and no
significant difference (3.78 versus 3.56, p=0.136)
between adolescent- and parent-proxy-reported HRQL.
However, Bland-Altman plots showed relevant
differences (exceeding minima l important difference) for
64% of all adolescent-parent pairs. Regression analysis
showed that an older age of adolescents, poorer adoles-
cent-reported illness comprehension (Brief-IPQ-TF,
coherence) and higher a dolescent-reported perceived
disease severity ( FAIM-TF) were associated with adoles-
cent-parent disagreement on HRQL.
Conclusions
Adolescent-parent agreement on HRQL w as moderate.
Adolescent-parent disagreement on HRQL was ma inly
determined by the adolescents rather t han the parent s
perceptions and characteristics. Illness comprehension
maybeanimportanttargetfor intervention aimed at
improving adolescent-parent agreement on HRQL. This
may contribut e to improved self-management of food
allergic adolescents.
Author details
1
University Medical Centre Groningen, University of Groningen, Pediatric
Allergy and Pulmonology, Groningen, Netherlands.
2
University Medical
Centre Groningen, University of Groningen, General practice, Groningen,
Netherlands.
3
University of Derby, Department of Psychology, Derby, United
Kingdom.
4
University Medical Centre Groningen, University of Groningen,
Department of Pediatric Allergy and Pulmonology, Groningen, Netherlands.
Published: 12 August 2011
doi:10.1186/2045-7022-1-S1-O40
Cite this article as: van der Velde et al.: Adolescent-parent disagreement
on health-related quality of life in food allergic adolescents; who makes
the difference? Clinical and Trans lational Allergy 2011 1(Suppl 1):O40.
1
University Medical Centre Groningen, University of Groningen, Pediatric
Allergy and Pulmonology, Groningen, Netherlands
Full list of author information is available at the end of the article
van der Velde et al. Clinical and Translational Allergy 2011, 1(Suppl 1):O40
http://www.ctajournal.com/content/1/S1/O40
© 2011 van der Velde et al; licensee BioMed Central Ltd. This is an open access article distributed under the terms of the Creat ive
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which pe rmits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited.
Citations
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TL;DR: The Brief IPQ has been administered to patients from age 8 to over 80, with a wide range of illnesses, in 26 languages from 36 countries, and has good psychometric properties.
Abstract: Objective: This paper aims to systematically review the use and performance of the Brief Illness Perception Questionnaire (Brief IPQ).Design: Electronic databases were searched for papers administering the Brief IPQ published in peer-reviewed journals. Data were extracted from the results for meta-analysis.Main outcome measures: Use by illness population, country, language and study design. The questionnaire’s concurrent validity, predictive validity, sensitivity to change, discriminant validity and mean scores for different populations were summarised.Results: The review included 188 papers. The Brief IPQ has been administered to patients from age 8 to over 80, with a wide range of illnesses, in 26 languages from 36 countries. Pooled correlations between illness perceptions and depression, anxiety, blood glucose levels and quality of life were consistent with previous research and theory (range .25–.49 for consequences, identity and emotional representations; −.12 to −.27 for personal control). All items...

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TL;DR: Meta-analytic path analyses supported a process model that included direct effects of illness representations on outcomes and indirect effects mediated by coping, which includes effects of moderators, individual differences, and beliefs about coping and treatment.
Abstract: According to the common-sense model of self-regulation, individuals form lay representations of illnesses that guide coping procedures to manage illness threat. We meta-analyzed studies adopting the model to (a) examine the intercorrelations among illness representation dimensions, coping strategies, and illness outcomes; (b) test the sufficiency of a process model in which relations between illness representations and outcomes were mediated by coping strategies; and (c) test effects of moderators on model relations. Studies adopting the common-sense model in chronic illness (k = 254) were subjected to random-effects meta-analysis. The pattern of zero-order corrected correlations among illness representation dimensions (identity, consequences, timeline, perceived control, illness coherence, emotional representations), coping strategies (avoidance, cognitive reappraisal, emotion venting, problem-focused generic, problem-focused specific, seeking social support), and illness outcomes (disease state, distress, well-being, physical, role, and social functioning) was consistent with previous analyses. Meta-analytic path analyses supported a process model that included direct effects of illness representations on outcomes and indirect effects mediated by coping. Emotional representations and perceived control were consistently related to illness-related and functional outcomes via, respectively, lower and greater employment of coping strategies to deal with symptoms or manage treatment. Representations signaling threat (consequences, identity) had specific positive and negative indirect effects on outcomes through problem- and emotion-focused coping strategies. There was little evidence of moderation of model effects by study design, illness type and context, and study quality. A revised process model is proposed to guide future research which includes effects of moderators, individual differences, and beliefs about coping and treatment.

262 citations


Journal ArticleDOI
TL;DR: HRQL scores improved after a DBPCFC, with greater improvements in HRQL scores after a negative outcome than a positive outcome (food allergy confirmed), demonstrating responsiveness of the FAQLQs.
Abstract: Background Currently, the longitudinal validity (validity over time) and responsiveness (ability to measure change over time) of the Food Allergy Quality of Life Questionnaire–Adult Form (FAQLQ-AF), the Food Allergy Quality of Life Questionnaire–Teenager Form (FAQLQ-TF), and the Food Allergy Quality of Life Questionnaire–Child Form (FAQLQ-CF) are unknown. Additionally, the self-reported impact of a double-blind, placebo-controlled food challenge (DBPCFC) on health-related quality of life (HRQL) in adults (≥18 years of age), adolescents (13-17 years of age), and children (8-12 years of age) is unknown. Objective The aims of this study were to assess the longitudinal validity and responsiveness of the FAQLQ-AF, FAQLQ-TF, and FAQLQ-CF and to assess the impact of a DBPCFC on HRQL. Methods Two hundred twenty-one participants suspected of food allergy were included from Dutch allergy centers. Participants undergoing a DBPCFC (experimental group) completed the FAQLQ and Food Allergy Independent Measure (FAIM) 1 month before (baseline) and 6 months after (follow-up) a DBPCFC. Participants not undergoing a DBPCFC (control group) completed the questionnaire package twice with a 7-month interval. Results HRQL scores improved after a DBPCFC, with greater improvements in HRQL scores after a negative outcome (food allergy ruled out) than a positive outcome (food allergy confirmed), demonstrating responsiveness of the FAQLQs. Significant correlations were shown between the change (follow-up minus baseline) in FAQLQ and FAIM scores supporting longitudinal validity of these questionnaires: FAQLQ-AF (Pearson correlation coefficient = 0.71, P P = .018), and FAQLQ-CF (Pearson correlation coefficient = 0.51, P Conclusions Our findings demonstrate the longitudinal validity and responsiveness of the FAQLQs. Greater improvements in HRQL scores were shown after a negative outcome than after a positive outcome.

71 citations


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01 Jul 2014-Allergy
TL;DR: This document is relevant to healthcare workers dealing with food-allergic patients, scientists engaging in food allergy research and policy makers involved in regulatory aspects concerning food allergy and safety.
Abstract: Instruments have been developed and validated for the measurement of health-related quality of life in patients with food allergy. This guideline has been prepared by the European Academy of Allergy and Clinical Immunology's (EAACI) Guidelines for Food Allergy and Anaphylaxis Group. It draws on a systematic review of the literature on quality of life instruments for food allergy and the Appraisal of Guidelines for Research & Evaluation (AGREE II) guideline development process. Guidance is provided on the use of such instruments in research, and the current limitations of their use in clinical practice are described. Gaps in current knowledge as well as areas of future interest are also discussed. This document is relevant to healthcare workers dealing with food-allergic patients, scientists engaging in food allergy research and policy makers involved in regulatory aspects concerning food allergy and safety.

65 citations


Journal ArticleDOI
01 Apr 2016-Allergy
TL;DR: The prevalence of emotional and behavioral problems in an epidemiological sample of adolescents and young adults with food allergy and whether food allergy is associated with adolescent and maternal reports of such problems are estimated.
Abstract: Background Adolescents with food allergy have poorer psychosocial outcomes compared with their nonallergic counterparts; however, few studies have prospectively examined the mental health of adolescents and young adults in this vulnerable population. Our objectives were to estimate the prevalence of emotional and behavioral problems in an epidemiological sample of adolescents and young adults with food allergy; determine whether food allergy is associated with adolescent and maternal reports of such problems; and examine the patterns of change in emotional and behavioral problems from adolescence to young adulthood among individuals with and without food allergy. Methods Data came from 1303 participants at 14 and 21 years of age in the Mater University Study of Pregnancy. Emotional and behavioral problems were measured using self- and maternal-reported symptoms of depression, anxiety, attention/deficit hyperactivity disorder (ADHD), oppositional defiant disorder, and conduct disorder. Results Maternal, but not self-reports suggested that emotional and behavioral problems were higher among adolescents with food allergy. Food allergy was associated with increased odds of elevated levels of maternal-reported symptoms of depression [OR = 4.50 (1.83, 11.07)], anxiety [OR = 2.68 (1.12, 6.44)], and ADHD [OR = 3.14 (1.07, 9.19)] in adolescence. Food allergy was also associated with depressive symptoms that persisted from adolescence to young adulthood [OR = 2.05 (1.04, 4.03)]. Conclusions Emotional and behavioral problems, particularly symptoms of depression, anxiety, and ADHD, are common among adolescents with food allergy in the general population and, in the case of elevated levels of depressive symptoms, persist into young adulthood. Healthcare professionals should seek adolescent and parental perspectives when assessing emotional and behavioral problems and monitor mental health during the transition to adulthood. Language: en

56 citations


References
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Journal ArticleDOI
TL;DR: The Brief IPQ provides a rapid assessment of illness perceptions, which could be particularly helpful in ill populations, large-scale studies, and in repeated measures research designs.
Abstract: Objective This study evaluates the Brief Illness Perception Questionnaire (Brief IPQ), a nine-item scale designed to rapidly assess the cognitive and emotional representations of illness. Methods We assessed the test–retest reliability of the scale in 132 renal outpatients. We assessed concurrent validity by comparing the Brief IPQ with the Illness Perception Questionnaire–Revised (IPQ-R) and other relevant measures in 309 asthma, 132 renal, and 119 diabetes outpatients. Predictive validity was established by examining the relationship of Brief IPQ scores to outcomes in a sample of 103 myocardial infarction (MI) patients. Discriminant validity was examined by comparing scores on the Brief IPQ between five different illness groups. Results The Brief IPQ showed good test–retest reliability and concurrent validity with relevant measures. The scale also demonstrated good predictive validity in patients recovering from MI with individual items being related to mental and physical functioning at 3 months' follow-up, cardiac rehabilitation class attendance, and speed of return to work. The discriminant validity of the Brief IPQ was supported by its ability to distinguish between different illnesses. Conclusion The Brief IPQ provides a rapid assessment of illness perceptions, which could be particularly helpful in ill populations, large-scale studies, and in repeated measures research designs.

2,097 citations


"Adolescent-parent disagreement on h..." refers background in this paper

  • ...The New Zealand’s Brief-IPQ (25) was previously validated in the Netherlands (26)....

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Journal ArticleDOI
TL;DR: The observation that the minimal important difference is consistent across domains and for both improvement and deterioration will facilitate interpretation of results of studies examining quality of life.
Abstract: This study was carried out to determine whether the minimal important difference, in evaluative quality of life instruments which use a 7-point scale, is similar across individual domains and for both improvement and deterioration. Thirty nine adults with asthma were studied, using an 8 week cohort with assessments at 0, 4 and 8 weeks. The outcomes were the Asthma Quality of Life Questionnaire and global rating of change. For overall asthma-specific quality of life and for all individual domains (activities, emotions, symptoms), the minimal important difference of quality of life score per item was very close to 0.5 (range: 0.42-0.58); differences of approximately 1.0 represented a moderate change (range: 0.77-1.51); differences greater than 1.5 represented large changes. Changes for improvement and deterioration were very similar. The changes in quality of life score that represent a minimal important difference are very similar to those observed for other evaluative instruments. The observation that the minimal important difference is consistent across domains and for both improvement and deterioration will facilitate interpretation of results of studies examining quality of life.

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TL;DR: There is no universal agreement on the definition of anaphylaxis or the criteria for diagnosis, so representatives from 16 different organizations or government bodies, including representatives from North America, Europe, and Australia, to continue working toward a universally accepted definition.
Abstract: There is no universal agreement on the definition of anaphylaxis or the criteria for diagnosis. In July 2005, the National Institute of Allergy and Infectious Disease and Food Allergy and Anaphylaxis Network convened a second meeting on anaphylaxis, which included representatives from 16 different organizations or government bodies, including representatives from North America, Europe, and Australia, to continue working toward a universally accepted definition of anaphylaxis, establish clinical criteria that would accurately identify cases of anaphylaxis with high precision, further review the evidence on the most appropriate management of anaphylaxis, and outline the research needs in this area.

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"Adolescent-parent disagreement on h..." refers methods in this paper

  • ...Discriminative abilities were investigated comparing total questionnaire scores for boys vs girls, for adolescents who have two or fewer vs more than two food allergies (independent-samples t-tests), and for adolescents who experienced anaphylaxis (31) vs adolescents who did not (Mann–Whitney U-test)....

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Journal ArticleDOI
TL;DR: Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender and there remain strong arguments for obtaining information from both parents and children whenever possible.
Abstract: A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions:- is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.

1,071 citations


Journal ArticleDOI
TL;DR: Evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters found some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results.
Abstract: Scope of the report This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? Objectives (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. Method Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. Results Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)

811 citations


"Adolescent-parent disagreement on h..." refers background in this paper

  • ...Additionally, parental attitudes, beliefs, and fears can have an impact on the utilization of health care services for their child (18), and parents may provide information not provided by adolescents themselves (19)....

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