Adolescents With Food Allergy Health And Social Care Essay

Aim: To develop and formalize the Food Allergy Quality of Life Questionnaire-Teenager Form ( FAQLQ-TF ) in the Dutch linguistic communication. Methods: Ten nutrient allergic striplings ( 13-17 old ages ) were interviewed and generated 166 HRQL points. The most of import points were identified by 51 nutrient allergic striplings utilizing the clinical impact method, ensuing in the FAQLQ-TF incorporating 28 points ( mark scope 1 'no damage ' to 7 'maximal damage ' ) . The FAQLQ-TF, the Food Allergy Independent Measure ( FAIM ) and a generic HRQL questionnaire ( CHQ-CF87 ) were sent to 98 nutrient allergic striplings for cross-sectional proof of the FAQLQ-TF.

Consequences: Construct cogency was assessed by the correlativity between the FAQLQ-TF and the FAIM ( rho 0.57, P & A ; lt ; 0.001 ) . The FAQLQ-TF had first-class internal consistence ( Cronbach ? 0.92 ) and discriminated between striplings who differed in figure of nutrient allergic reactions ( 1 nutrient allergic reaction vs. & A ; gt ; 2 nutrient allergic reactions, entire FAQLQ-TF mark, 4.3 vs. 3.5 ; p=0.037 ) , but did non know apart between reported anaphylaxis or non. The FAQLQ-TF correlated decrepit with 6 of the 11 CHQ-CF87 graduated tables, showing convergent/discriminant cogency.

Decision: The FAQLQ-TF is the first self-administered, disease-specific HRQL questionnaire for nutrient allergic striplings. It has good concept cogency and first-class internal consistence and discriminates between striplings who differ in figure of nutrient allergic reactions. The FAQLQ-TF is short and easy to utilize and may hence be a utile tool in clinical research.

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Clinical Deductions

The Food Allergy Quality of Life Questionnaire-Teenager Form ( FAQLQ-TF ) is dependable, valid, short and easy to utilize and therefore a utile tool in clinical research.

Capsule sum-up

The FAQLQ-TF is the first self-administered, disease-specific HRQL questionnaire for nutrient allergic striplings. It is dependable and valid and hence a utile tool in clinical research in which HRQL is the result of involvement.

Key words

Adolescents

EuroPrevall

Food allergic reaction

Health-related quality of life

Adolescents

Abbreviations

HRQL Health-Related Quality of Life

FAQLQ-TF Food Allergy Quality of Life Questionnaire - Adolescent Form

FAQLQ-CF Food Allergy Quality of Life Questionnaire - Child Form

FAQLQ-PF Food Allergy Quality of Life Questionnaire - Parent Form

MI Mean Importance

OI Overall Importance

FAIM Food Allergy Independent Measure

EO Expectation of Outcome

IM Independent Measure

CHQ-CF87 Children 's Health Questionnaire - Child Form

AADR Allergen Avoidance and Dietary Restrictions

EI Emotional Impact

RAE Risk of Accidental Exposure

DBPCFC Double-Blind Placebo-Controlled Food Challenge

Introduction

Having a nutrient allergic reaction can be fatal and striplings are at the highest hazard of decease from nutrient allergic reaction ( 1-3 ) . It is estimated that 2.3 % of striplings are nutrient allergic ( 4 ) . The lone effectual signifier of intervention of nutrient allergic reaction is rigorous turning away of the implicated nutrient ( s ) and proviso of medicines for exigency intervention ( 5 ) . In malice of the high hazard of decease, nutrient allergic striplings really reported societal isolation as the most distressing facet of their disease ( 6 ) . In add-on, some striplings reported depression as a consequence of nutrient allergic reaction and this may take to troubles in school public presentation and leisure activities ( 7 ) . Therefore, nutrient allergic striplings need to be continuously watchful as to what they are eating in legion state of affairss and scenes and, along with the fright of allergic reactions, this may hold a negative impact on quality of life.

At present, no validated self-administered, food-allergy-specific health-related quality of life ( HRQL ) questionnaire exists for usage in striplings. A few surveies have reported that nutrient allergic reaction has a negative impact on HRQL in striplings. However, three restrictions arise when construing these surveies. First, no differentiation was made between striplings and younger kids ( 8-13 ) , whereas HRQL in striplings demands to be addressed individually, because HRQL may be influenced by the phase of neurocognitive and emotional development of an person ( 14 ; 15 ) . Second, HRQL questionnaires were administered to parents therefore mensurating parents ' perceptual experiences ( 8-13 ) . However, kids and parents differ in their positions and judgements about quality of life ( 16 ) . Finally, surveies used generic HRQL questionnaires ( 11-13 ; 17 ) or disease-specific questionnaires which have non been validated ( 8 ; 10 ) , whereas generic HRQL questionnaires are non every bit sensitive as disease-specific HRQL questionnaires ( 18 ) and proof is highly of import in order to find whether the questionnaire is mensurating that portion of quality of life which is determined by the mark upset ( 19 ) .

Therefore, we have developed and cross-sectionally validated the first self-administered, food-allergy-specific HRQL questionnaire for striplings, the Food Allergy Quality of Life Questionnaire-Teenager Form ( FAQLQ-TF ) . This questionnaire has been developed as portion of the EuroPrevall undertaking, a European multi-center research undertaking on nutrient allergic reaction. The FAQLQ-TF complements the late developed self-administered Food Allergy Quality of Life Questionnaire-Child Form ( FAQLQ-CF ) for kids aged 8 to 12 old ages ( 20 ) and the parent-administered Food Allergy Quality of Life Questionnaire-Parent Form ( FAQLQ-PF ) for parents of nutrient allergic kids aged 0 to 12 old ages ( 21 ) .

Method

Participants and process

During point coevals, participants were recruited merely from our outpatient pediatric allergic reaction clinic. Two striplings were approached during a double-blind placebo-controlled nutrient challenge ( DBPCFC ) and, based on patient records, eight striplings were approached by phone. All approached striplings ( niˆ?10 ) agreed to take part in an interview on the impact of nutrient allergic reaction on their day-to-day life.

During point decrease and cross-sectional proof, participants were recruited from our outpatient pediatric allergic reaction clinic ( based on patient records or assignments for DBPCFC ) or were recruited by advertizement in local intelligence documents and through nutrient allergy support organisations ( the Dutch Foundation for Food Allergy and the Dutch Anaphylaxis Network ) . A missive of invitation, the questionnaire and a pre-paid return envelop was sent to suited striplings from our clinic and to striplings who responded to the advertizement. The missive of invitation stressed that engagement was wholly voluntary. When the questionnaire was non returned within a month, the stripling was contacted by phone as a reminder. Adolescents were non paid for their engagement in any phase of questionnaire development or proof.

Before cross-sectional proof, the questionnaire was pre-tested in three striplings ( aged 13, 15 and 17 old ages ) . No major jobs emerged during this pre-test. Thereafter, the FAQLQ-TF, the Food Allergy Independent Measure ( FAIM ) and the CHQ-CF87, a generic quality of life questionnaire, were sent by mail to 98 nutrient allergic striplings. Some of them had participated in the point coevals ( 10 % ) or point decrease ( 49 % ) . Descriptive features were asked sing age, sex, type and figure of nutrient allergic reactions, type of symptoms and diagnosing. For the striplings recruited from our clinic, we checked patient records to find whether nutrient allergic reaction had been diagnosed by a DBPCFC.

During all phases of questionnaire development and proof, all common nutrient allergic reactions and different types and badnesss of symptoms were represented. The survey was approved by the local medical moralss review committee ( METc 2005/051 ) who deemed that permission from the committee was non required.

Development

Item coevals

For the development and proof of the FAQLQ-TF, the same methodological analysis was used as for the development and proof of the FAQLQ-CF, which is described in more item elsewhere ( 20 ) . Briefly, possible points for the new questionnaire were generated by questioning 10 nutrient allergic striplings ( aged 13-17 old ages ) . In add-on, literature reappraisal and adept sentiment were consulted. This resulted in an drawn-out point questionnaire of 166 points.

Item decrease

The drawn-out point questionnaire was sent to a different group of 51 nutrient allergic striplings to place the most of import points by utilizing the clinical impact method ( 22 ; 23 ) . The striplings were asked to bespeak the importance of applicable points utilizing a five-point graduated table. Frequency ( per centum ) was multiplied by average importance ( MI ) , ensuing in the overall importance ( OI ) of each point. The maximum possible OI was 5.0 ( 24 ; 25 ) . Items with the greatest OI were selected for the FAQLQ-TF, except one of any brace of points with an inter-item correlativity & A ; gt ; 0.85 and/or overlapping content ( face cogency ) . The selected points were worded as inquiries holding a seven-point response graduated table runing from 'not troubled ' to 'extremely troubled ' ( 23 ; 25 ) . A psychologist and a linguist reviewed the FAQLQ-TF for lucidity and easiness of usage.

Cross-sectional proof

Construct cogency

Construct cogency was investigated by computation of correlativity coefficients for the FAQLQ-TF with the Food Allergy Independent Measure ( FAIM ) . This attack has already been successfully implemented to formalize disease-specific HRQL questionnaires ( 9 ; 20 ; 21 ; 25 ) and it is particularly utile in anaphylactic upsets where no nonsubjective measuring of the extent or badness of disease exists ( 26 ) . The FAIM, which was besides used to formalize the FAQLQ-CF ( 20 ) , includes four Expectation of Outcome ( EO ) inquiries and two Independent Measure ( IM ) inquiries. The EO inquiries are based on the sensed outlook of patients of what will go on following exposure which is likely to be a impulsive force of quality of life ( 26 ) . The IM inquiries are based on the same rule and inquire about the sensed figure of nutrients one needs to avoid and sensed impact on societal life. We expected moderate correlativity coefficients ( 0.40-0.60 ) for the FAQLQ-TF with the FAIM. The proof of the FAQLQ-TF was carried out in the Dutch linguistic communication. The English version of the FAQLQ-TF and the FAIM are presented as Figure E1 and Figure E2 in the Online Repository. The Dutch FAQLQ-TF and the FAIM were translated into English by a native English talker and back translated by a native Dutch talker, harmonizing to the guidelines of the World Health Organization ( 27 ) . The original Dutch version was compared with the back translated Dutch version. No of import differences in content or significance of inquiries emerged.

Discriminative ability

To set up the discriminatory ability of the FAQLQ-TF, we compared the entire FAQLQ-TF mark for striplings who reported anaphylaxis ( i.e. striplings who reported two or more of the undermentioned cardiovascular symptoms ; giddiness, experiencing your bosom round fast, loss of vision, inability to stand, light headedness, prostration, loss of consciousness/passing out ) versus striplings who did non, for striplings who reported many nutrient allergic reactions versus striplings who reported few nutrient allergic reactions, for male childs versus misss ( 28 ) and for striplings who were recruited from our clinic versus striplings who were recruited by advertizement.

Dependability

The dependability of the FAQLQ-TF was assessed by administrating the questionnaire to 34 striplings on two occasions 10-14 yearss apart.

Convergent and discriminant cogency

To look into convergent and discriminant cogency, a generic HRQL questionnaire was administered: the Children 's Health Questionnaire-Child Form ( CHQ-CF87 ) ( 29 ; 30 ) . This questionnaire is self-administered by striplings and contains 87 points divided into 12 graduated tables. We expected weak correlativity coefficients ( 0.20-0.40 ) for the FAQLQ-TF with the CHQ-CF87.

Statistical analyses

The natural FAQLQ-TF and FAIM scores 0 to 6 were recoded as 1 to 7. The entire FAQLQ-TF mark is the average mark of all points with a scope of 1 'no damage ' to 7 'maximal damage ' . To measure concept cogency, Spearman 's correlativity coefficients were calculated between the FAQLQ-TF and the FAIM. The allotment of the points of FAQLQ-TF into spheres was based on factor analysis ( chief constituent analysis with Varimax rotary motion ) ( 31 ) and face cogency determined by a clinical expert panel ( BMJFdB, JNGOE and AEJD ) ( 14 ; 32 ) . To look into the internal consistence of the FAQLQ-TF and the spheres, Cronbach 's ? were calculated. An ? greater than 0.70 indicates good internal consistence ( 33 ) . The Mann-Whitney trial was used for mensurating the discriminatory ability of the FAQLQ-TF. The dependability of the FAQLQ-TF was assessed by ciphering the intraclass correlativity coefficient of the repeated FAQLQ-TF measuring ( 34 ) . Finally, convergent and discriminant cogency were assessed by ciphering Spearman 's correlativity coefficients between the FAQLQ-TF and the CHQ-CF87 graduated tables. Statistical analyses were performed with SPSS for Windows 14.0 ( SPSS Inc. , Chicago, IL, USA ) .

Consequence

Development

Descriptive features of the striplings involved in the point coevals and point decrease are shown in Table 1. The drawn-out point questionnaire was returned by 46 striplings ( response rate 90 % ) . The OI tonss of all 166 points of the drawn-out point questionnaire ranged from 0.00 to 2.89. The point decrease resulted in the choice of 28 points ( OI & A ; gt ; 1.37 ) for the FAQLQ-TF ( Table 2 ) .

Cross-sectional proof

Participants

The questionnaire bundle including the FAQLQ-TF, the FAIM and the CHQ-CF87 were returned by 75 striplings ( response rate 77 % ) . One stripling was excluded because the descriptive features were losing from the questionnaire, ensuing in 74 assessable questionnaires for the cross-sectional proof. Forty-three striplings ( 58 % ) were recruited from our clinic, of which 19 ( 26 % ) had a nutrient allergic reaction confirmed by a DBPCFC. The other striplings from our clinic had a physician-diagnosed nutrient allergic reaction ( skin asshole and/or blood trial ) and the bulk was expecting DBPCFC. All striplings recruited by advertizement ( 42 % ) reported physician-diagnosed nutrient allergic reactions. Descriptive features of the striplings involved in the cross-sectional proof are shown in Table 1. There were no important differences in descriptive features between male childs and misss, between striplings recruited from our clinic and striplings recruited by advertizement or between striplings with a physician-diagnosed nutrient allergic reaction and striplings with a nutrient allergic reaction diagnosed by DBPCFC.

Construct cogency

Most points of the FAQLQ-TF correlated significantly with at least one of the FAIM inquiries and with the mean of the FAIM inquiries. Five points did non correlate with any of the FAIM inquiries and were hence excluded from the questionnaire. The validated FAQLQ-TF therefore consists of 23 inquiries. As expected, we found moderate correlativity coefficients between the FAQLQ-TF and the FAIM. The entire FAQLQ-TF mark correlated significantly with the average FAIM ( rho 0.57, P & A ; lt ; 0.001 ) and with the single FAIM inquiries ( Table 3 ) . This important correlativity coefficient was found for striplings with a nutrient allergic reaction diagnosed by DBPCFC and for striplings with a physician-diagnosed nutrient allergic reaction ( entire FAQLQ-TF mark with the average FAIM, rho 0.76, P & A ; lt ; 0.000 and rho 0.52, P & A ; lt ; 0.000, severally ) . These consequences support the concept cogency of the FAQLQ-TF. That is, the FAQLQ-TF steps that portion of quality of life that is affected by nutrient allergic reaction. Expectation of Outcome inquiry 3 ( EO3 ) did non correlate with any of the single HRQL points and is therefore improbable to be an appropriate independent step for nutrient allergic reaction in striplings. Therefore, we excluded this inquiry from farther analyses.

Sphere construction and internal consistence

The 23 points of the FAQLQ-TF were subjected to factor analysis ( chief constituent analysis ) , which revealed 5 factors with characteristic root of a square matrixs & A ; gt ; 1. To assistance in the reading of these factors, Varimax rotary motion was performed for 5, 4 and 3 factors. These groupings were reviewed by an adept panel, and based on face cogency the grouping of 3 factors made the most sense. This grouping revealed the undermentioned spheres: Allergen Avoidance and Dietary Restrictions ( AADR ) , Emotional Impact ( EI ) and Risk of Accidental Exposure ( RAE ) . These three factors showed a figure of strong burdens ; all exceed 0.300, which is regarded as an acceptable standard ( 31 ) . The adept panel allocated 3 points to a more appropriate sphere based on face cogency. The FAQLQ-TF and the spheres had first-class internal consistence with Cronbach 's ? transcending 0.70 ( Table 3 ) .

Discriminative ability

Adolescents who reported two or more nutrient allergic reactions reported a significantly more impaired HRQL than striplings who reported merely one nutrient allergic reaction ( entire FAQLQ-TF mark 4.3 vs. 3.5 ; p=0.037 ) . There was no important difference in entire FAQLQ-TF mark between striplings who reported anaphylaxis ( cardiovascular symptoms ) and striplings who did non describe anaphylaxis ( 4.5 vs. 4.0 ; p=0.184 ) or between male childs and misss ( 4.0 vs. 4.3 ; p=0.324 ) . Adolescents who were recruited by advertizement reported a significantly more impaired HRQL than striplings recruited from our clinic ( entire FAQLQ-TF mark 4.6 vs. 3.9 ; p=0.015 ) .

Dependability

The entire FAQLQ-TF mark intraclass correlativity coefficient was 0.98 ( 95 % assurance interval, 0.95-0.99 ) , bespeaking first-class test-retest dependability.

Convergent and discriminant cogency

The entire FAQLQ-TF mark correlated weakly with 6 of the 11 CHQ-CF87 graduated tables. In add-on, the spheres of the FAQLQ-TF correlated weakly with several CHQ-CF87 graduated tables ( Table 4 ) . This indicates that both questionnaires step constructs that are partially related ( i.e. convergent cogency ) . However, as expected the correlativities are weak and sometimes even absent because the CHQ-CF87 is a generic quality of life questionnaires and hence non every bit sensitive as the disease-specific FAQLQ-TF ( i.e. discriminant cogency ) .

Discussion

We have developed and validated the first health-related quality of life ( HRQL ) questionnaire particular for striplings with nutrient allergic reaction, the Food Allergy Quality of Life Questionnaire-Teenager Form ( FAQLQ-TF ) . We found that the FAQLQ-TF has good concept cogency and first-class internal consistence ( Table 3 ) . In add-on, the FAQLQ-TF discriminates between striplings who differ in figure of nutrient allergic reactions. Finally, the FAQLQ-TF showed convergent/discriminant cogency ( Table 4 ) , which supports the demand for a disease-specific quality of life questionnaire for nutrient allergic striplings.

It is known that HRQL may be influenced by the current phase of cognitive, societal and emotional development of an person. Therefore, it has been argued that HRQL in striplings should be measured by agencies of a specific instrument ( 14 ; 15 ) . The FAQLQ-TF was specifically designed for nutrient allergic striplings aged 13 to 17 old ages. Age rightness was ensured by bring forthing and including merely points that were regarded as of import by nutrient allergic striplings ( clinical impact method ) . The FAQLQ-TF focal points on the perceptual experiences of the striplings themselves, because the questionnaire is self-administered.

Many of the points in this instrument are specific to striplings. An illustration is 'Carrying an Epipen ' . The Epipen issue in nutrient allergic striplings is in harmony with the literature. It has been reported that striplings raise concerns about its size and portability ( 35 ) and sometimes striplings do non transport it based on societal fortunes and sensed hazards ( 36 ) . Despite our age specific attack and the separate development of kid and adolescent questionnaires, it is striking that about two tierces of the adolescent inquiries in the FAQLQ-TF correspond to the kid inquiries in the FAQLQ-CF ( 20 ) . Therefore, although we generated many age specific points, there are seemingly 'general ' nutrient allergic reaction points that are of import in kids and striplings. Furthermore, we found that the three most of import points that impair quality of life were the same in kids and adolescents ( 'Always be alert as to what you are eating ' , 'The ingredients of a merchandise alteration ' , 'Able to eat fewer merchandises ' ) .

An unexpected determination was that EO3 ( Chance of deceasing when by chance exposed ) was non correlated with any of the points of the FAQLQ-TF. This may bespeak that fright of deceasing of nutrient allergic reaction is non a driving force of quality of life in striplings, which may be characteristic and specific for striplings. It has been reported that striplings perceived their anaphylaxis as 'no large trade ' ( 35 ) . In add-on, striplings are at the highest hazard of decease from nutrient allergic reaction ( 1-3 ) . This high hazard may be the consequence of underestimate of the badness of nutrient allergic reaction and the belief of striplings that they will non decease from any cause, including their nutrient allergic reaction. In fact, there were no striplings in this survey who reported 'always ( 100 % opportunity ) ' of deceasing when by chance exposed, whereas this was reported by 5 % of kids and 4 % of grownups in other FAQLQ proof surveies ( non shown ) . Although non statistically important, this is a notable observation. The wrong belief of immortality of striplings may ensue in risk-taking behaviour that may increase the hazard of deceasing from a nutrient allergic reaction. Therefore, doctors and other health-care suppliers should be cognizant that underestimate of nutrient allergic symptoms may be of import when reding striplings with nutrient allergic reaction.

When comparing the discriminatory consequences of the FAQLQ-TF with the FAQLQ-CF ( 20 ) , two interesting observations emerged. First, there was no important difference in entire FAQLQ-TF mark between striplings who reported anaphylaxis ( cardiovascular symptoms ) and striplings who did non. The same consequence was found in kids ( 20 ) . Second, striplings who were recruited by advertizement reported a significantly more impaired HRQL than striplings recruited from our clinic. This difference was non important in kids, although a tendency was seen ( 20 ) . It may be that striplings see safety and security by being looked after in the clinic, whereas striplings outside the clinic experience more uncertainness and insecurity about their nutrient allergic reaction ( 37 ) . Most striplings recruited from our clinic were known to us for many old ages ( average figure of old ages since first visit 12.5 ( SD 5.4 ) ) . In add-on, it has late been shown that parental trait anxiousness is higher in parents of kids with a suspected nutrient allergic reaction who refused to take part in a DBPCFC than parents who did take part ( 38 ) . Since it is known that parental anxiousness is related to child anxiousness ( 39 ) , it may be that the striplings in our survey recruited by advertizement have higher degrees of trait anxiousness than striplings recruited from our clinic and may therefore hold more damage in quality of life.

This survey may hold some restrictions. First, the proof of the FAQLQ-TF was carried out in the Dutch linguistic communication. The FAQLQ-TF was carefully translated into English utilizing the guidelines of the World Health Organization. The cogency of the English linguistic communication version of this questionnaire is presently being investigated every bit good as versions in several other European linguistic communications. Our experience with the Dutch Vespid Allergy Quality of Life Questionnaire was that the English interlingual rendition validated good ( 25 ) . It is possible, nevertheless, that cultural differences may act upon the ability of our questionnaire to place the most of import points for nutrient allergic patients in different cultural or lingual scenes. Second, patients were recruited at our clinic and by advertizement. These patients may differ from each other, for illustration in footings of degree of information about their nutrient allergic reaction. However, we did non happen important differences in the descriptive features between these groups and other possible differences would non hold adversely influenced the proof process, where a spectrum of badness is good to obtain optimum correlativities. Third, some of the points in this questionnaire are likely to be clip sensitive in the long tally. For illustration, new labelling Torahs could do the labelling points included in this questionnaire obsolete. It is likely that in clip, this questionnaire will necessitate some updating and version. Finally, this study describes merely the cross-sectional proof of the FAQLQ-TF. Currently, the longitudinal proof of the questionnaire is being investigated ( i.e. the capacity of the FAQLQ-TF to mensurate differences in HRQL over clip ) .

In drumhead, we have developed and validated the first HRQL questionnaire particular for nutrient allergic striplings, the Food Allergy Quality of Life Questionnaire-Teenager Form ( FAQLQ-TF ) . We found that this questionnaire is valid and dependable and it is short and easy to utilize. The FAQLQ-TF will be therefore a suited questionnaire for clinical research in nutrient allergic striplings in which HRQL is the result of involvement.

Recognitions

This work was funded by the EU through the EuroPrevall undertaking ( FOOD-CT-2005-514000 ) . We would wish to thank Dr. GFEC van Linden new wave lair Heuvell, medical psychologist, and Karel Verbeek, linguist, for reexamining the drawn-out point questionnaire and the FAQLQ-TF and Tina van der Velde for executing the test-retest of the FAQLQ-TF.

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