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Journal of Pediatric Psychology, 40(6), 2015, 572–580

doi: 10.1093/jpepsy/jsv009
Advance Access Publication Date: 21 March 2015
Original Research Article

Children’s Food Allergies: Development of
the Food Allergy Management and
Adaptation Scale
Mary D. Klinnert,1,2 PHD, Elizabeth L. McQuaid,3,4 PHD,
David A. Fedele,5 PHD, Anna Faino,1 MS, Matthew Strand,6,7 PHD,
Jane Robinson,8,9 PHD, Dan Atkins,8,9 MD, David M. Fleischer,8,9 MD,
Jonathan O’B. Hourihane,10 MD, Sophia Cohen,1 BA, and
Hannah Fransen,11 MSW

Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015
1
Department of Pediatrics, National Jewish Health, 2Department of Psychiatry, University of Colorado School of
Medicine, 3Department of Psychiatry and Human Behavior, Alpert Medical School, Brown University, 4Bradley/
Hasbro Children’s Research Center, 5Department of Clinical & Health Psychology, University of Florida, 6Division of
Biostatistics & Bioinformatics, National Jewish Health, 7Department of Biostatistics & Informatics, University of
Colorado School of Public Health, 8Department of Pediatrics, University of Colorado School of Medicine, 9Allergy
Section, Children’s Hospital Colorado, 10Department of Paediatrics and Child Health, University College Cork, and
11
Graduate School of Social Work, University of Denver
All correspondence concerning this article should be addressed to Mary D. Klinnert, PHD, National Jewish Health, 1400
Jackson St., Denver, CO 80206, USA. E-mail: klinnertm@njhealth.org
Received August 22, 2014; revisions received January 19, 2015; accepted January 21, 2015

Abstract
Objective Develop a measure that evaluates effective pediatric food allergy (FA) management,
child and parent FA anxiety, and integration of FA into family life. Methods A semistructured
family interview was developed to evaluate FA management using a pilot sample (n ¼ 27). Rating
scales evaluated eight dimensions of FA management (FAMComposite), child anxiety, parent anxi-
ety, and overall balanced integration (BI). Families of children with IgE-mediated food allergies
(n ¼ 60, child age: 6–12) were recruited for interview and rating scale validation.
Results FAMComposite was correlated with physician ratings for families’ food avoidance and re-
action response readiness. FA anxiety was correlated with general anxiety measures for children,
but not parents. Parents’ FA anxiety was correlated with expectations of negative outcomes from
FA. Low BI was associated with poor quality of life and negative impact on family functioning.
Conclusions Preliminary analyses support Food Allergy Management and Adaptation Scale valid-
ity as a measure of family adaptation to pediatric FA.

Key words: family adaptation; management; pediatric food allergy; psychosocial adjustment.

Children’s food allergies are increasingly common, with current effectively (Sicherer & Sampson, 2006). The negative impact of
U.S. prevalence estimates ranging up to 8% (Gupta et al., FA on families can be pervasive. Families of children diagnosed
2011). Food allergy (FA) reactions that are mediated by immu- with FA report disruptions in daily activities, increased stress
noglobulin E (IgE) can cause hives, breathing difficulties, and and symptoms of anxiety and depression, and lower quality of
gastrointestinal symptoms. Reactions can progress to anaphy- life (QoL) (Cummings, Knibb, King, & Lucas, 2010). Effective
laxis, involving respiratory, cardiovascular, and/or gastrointesti- family management of food allergies and psychosocial adjust-
nal symptoms (Boyce et al., 2010). Although rare, anaphylactic ment to the chronic stresses of food allergies are key compo-
reactions can result in death if not treated promptly and nents of families’ adaptation.

C The Author 2015. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
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Mandell.. marital status. 2005).. volvement. response readiness. (McQuaid et al. For a subset of families. tation to FA. and and anxiety has rarely been investigated. may not have aptation to food allergies can include taking excessive measures that medication readily available. 2003. developmental level dictate the parental level of concern and in- logic disease and insulin-dependent diabetes mellitus (Avery. 2006). ity within and interactions among these domains contribute to fami- peer socialization. Erlewyn-Lajeunesse. Parents’ outcome expectations for se. 2000).Development of the FAMAS 573 FA Management behavioral adjustment or to their overall adaptation to children’s food allergies. 2005. & Hourihane... 2008). the Food Allergy Quality of logical resources available for effective illness management.. formation obtained and the potential to clarify discrepant perspec- ciency with FA management is related to their emotional and tives among family members. equilibrium and normative child and family activities. The parent-report Food Allergy Impact Scale tive family impact (Bollinger et al. Our measurement approach. Like other pediatric chronic illnesses. A FA-specific family socioeconomic status (SES). Expectations for death are surprisingly common. The aims of this study were to develop and provide LeBovidge. Kopel. Kalish. each stage of children’s development is associated with mensions of children’s FA self-management. or taking ap- to treat exposures appropriately (Arkwright & Farragher. Impact of FA on Children and Parents We propose that family adaptation to food allergies operates Parents and children with food allergies report lower QoL when through multiple pathways (Figure 1). Cohen et al. Knibb. 2004) and for children (DunnGalvin et al. 2012. Although potentially time intensive. 2005). such as age. 2009. Noone. instrument for assessing families’ asthma management systems Few studies have addressed how families cope with the daily bur. but also indicate that mothers’ anxiety and stress levels are management of children’s food allergies that takes into account spe- correlated with ratings of poorer QoL (Roy & Roberts. and that posi- Anxiety is a central feature of reduced QoL for parents and chil. while number of food allergies tentially life-threatening reactions (Cohen. 1989). no studies have assessed the adequacy of Appropriate management of a child’s food allergies necessitates families’ FA management skills in relation to the behavioral coping food avoidance across home and social contexts. has consistently been associated with reduced parent QoL and nega- & Sicherer. documented major impacts on par.oxfordjournals.g. et al. but within the family mains. (McQuaid et al. no measure comprehensively evaluates the adequacy 2008). Munoz-Furlong. The (FAIS) revealed elevated stress for parents and children. parents initially bear of parents’ FA management skills across requisite behavioral do- primary responsibility for FA management..org/ at :: on September 16. modeled on a validated Curtis. 2015 through interactions and collaboration with parents as they manage and cope with the FA over time (Kazak. for parents (Cohen et al. Gold. balanced integration (BI. Flokstra-de Blok. and lack the knowledge or confidence limit appropriate developmental and social activities. 2006). 2004). & Schneider. & Sicherer. To our knowledge.. ness. tive adaptation to FA occurs when families are able to integrate the dren with food allergies (DunnGalvin. 2013). Poor family ad- lack the skills to recognize symptoms of anaphylaxis.. 2006. Fritz. demands and stresses into their lives in a balanced manner. & rious FA reactions or death were strongly correlated with poor QoL Klinnert. propriate preventive measures. 2005). The Food Allergy nent rating scales. Burks. balanced with appropriate vigilance without ex- 2009). learned Downloaded from http://jpepsy. semistruc- Parent Questionnaire was developed to assess psychosocial impact and tured family interviews have been shown to provide unique variance coping strategies used by parents of children with FA (LeBovidge et al. 2004). in explaining child health outcomes beyond self-report measures 2006) but psychometric and conceptual shortcomings limited its useful.. 2011). & Hourihane. home schooling owing to FA) (Bollinger et al.. 2010. parents often ties for children and families (Mandell et al. including recognizing symptoms of FA reactions and managing them with recommended medication (Sicherer & Sampson. and. and QoL (Roy & Roberts. Furthermore. used a semistructured interview and perti- dens and emotions elicited by pediatric food allergies... no measures have evaluated key di- system. influence material and psycho- questionnaire regarding parents’ QoL. Roy & Roberts. Walders. 2008). 2011). McQuaid. Strauch. and Knight. Reports have been mixed To date. and comorbid al- ents owing to daily demands in areas such as meal preparation and lergic conditions have shown mixed associations with FA anxiety activity planning. Mofidi. and simultaneously modulating strategies to guide their children’s food avoidance in activities out- anxiety levels and maintaining developmentally appropriate activi- side of the home (Kapoor et al. including food avoidance and reaction greater psychological distress for their children (LeBovidge et al. as well as extensive worry and anxiety about po. to our knowledge. this may be owing to the greater depth of in- ness as a measure of parents’ coping. relationship between parent and child FA management strategies fects on daily activities such as meal preparation and eating out. It is unknown how families’ profi. preliminary validation for an interview-based measure of family 2011). multiple ef. 2011) and cific management strategies. Caregiver characteristics. & Hardie. . lies’ levels of FA management and their maintenance of emotional 2006). greater responsibility and more FA self-management skills. and response readi- strategies required for positive adaptation to children’s food allergies. termed Dubois. 2004). Roy & Roberts. Primeau et al. reaction history. no measure exists that targets the complex interplay of FA regarding general anxiety levels among parents and children with management and psychosocial adjustment required for family adap- food allergies (Cummings. Positive family adaptation to childhood FA requires achieving a bal- Parents often have difficulties correctly identifying causal foods in ance between managing a potentially life-threatening condition that products (Joshi. Child factors such as age and compared with controls or other illness groups such as rheumato. Disease Life–Parent Burden (FAQL-PB). among parents. possibly Current Study representing a misperception of the prevalence of FA fatalities among children (Umasunthar et al. but becoming overwhelmed by the Although several aspects of FA management have been evaluated anxiety that accompanies constant vigilance (Klinnert & Robinson. factors such as duration of illness. We expected that variabil- limitations on participation in activities not related to food (e. anxiety relating to FA can be debili.. 2005). FA management can be a complex process that entails lifestyle Family Adaptation to FA changes and poses multiple challenges for the family system. King. 2002) and may use inadequate requires vigilance and preparedness.. ties.. cessive anxiety or unnecessary restrictions on child and family activi- tating for both parents and children (Manassis.

impact on family social activities). gies for FA management (Boyce et al. 2005). SD ¼ 1. develop specific styles for coping with food allergies. 2008). and descriptive anchor points would (2a) be moderately correlated with general anxiety measures were developed. prior use of injectable epinephrine). range: 6–12 years) and their be significantly correlated with (3a) lower FA family impact mea. The interview and and accept or reject the incorporation of food allergies into their rating scales were developed with reference to the constructs identi- identity (DunnGalvin et al. and qualitative skills. 2015 Figure 1. (2) FA-specific anxiety identified to consider when rating. each team member indepen- FAQL-PB. consultation with board-certified allergists regarding prin- years with IgE-mediated food allergies because it is during the ciples of FA management. We hypothesized (1) the FA man. core features were parents’ injectable epinephrine proficiency. 2009). and (3) a global scale to assess how well families’ were balancing FA management demands with the psycho. agement component.4. Parental informed consent and 2006). Such an instrument could serve fied a priori as fundamental to FA adaptation. and (1c) be associated with an observational assessment of tioning for respective domains. data obtained from focus groups (unpublished). tive experience (e. point rating scales was developed for key constructs and behavioral ment made by physicians who specialize in clinical care for children domains. 2005). caregivers. by the institutional review board. with the mid-point score (5) representing “adequate” func- with FA.. Following each interview.. who represented various levels of FA management and sured by the FAIS and (3b) better parent FA QoL. on empirical reports regarding children and families’ experiences We developed this measure for families of children aged 6–12 with FA.oxfordjournals. Rating scales were constructed to capture a range of functioning Methods for each of three constructs essential within our model of family ad- The FAMAS development and validation studies were conducted at aptation to children’s food allergies: (1) multiple scales for assess- a tertiary care center in a metropolitan setting and were approved ment of FA management behavioral domains (Sicherer & Sampson. an initial series of 9- scales.. we tested each of the three key con. for both parents and children.org/ at :: on September 16. measured by the adaptation. & Hourihane...8. Conceptual model of family adjustment to food allergies. pilot studies of parent FA QoL and out- school-age years that children solidify self-management come expectations (Klinnert & Robinson. dently reviewed video recordings with attention to interview .574 Klinnert et al.. sub- To test the validity of the Food Allergy Management and jective experience (e.g. to identify families in need of clinical services owing to problems we generated open-ended stem questions with follow-up probes de- with FA adaptation. and (3) BI would dren with FA (M age ¼ 8. with child-specific scales for areas within children’s realm of child assent were obtained for both the pilot and the validation responsibility (DunnGalvin. and structs using multiple strategies. Downloaded from http://jpepsy. emotional response to food allergies). as well as relevant targets for future signed to elicit meaningful behaviors and vignettes from children interventions. FAMAS Interview and Scale Development logical well-being and developmental needs of their children as well Development of the FAMAS interview and rating scales was based as themselves (McQuaid et al. psychosocial adjustment (e. For each construct. 2010). (1b) correlate with independent ratings of family FA manage. objec- Adaptation Scale (FAMAS). composed of eight subscales.g. Gaffney. 2009).. avoiding foods).g. (2) phases of the study.g. and parents regarding FA management (e.. scales for assessment of FA anxiety for individual parents and chil- dren (Mandell et al. For each scale. and (2b) mothers’ FA Anxiety would The pilot phase involved video-recorded interviews with 27 chil- be correlated with outcome expectations for death. would (1a) Based on clinical recommendations and effective behavioral strate- demonstrate adequate internal consistency across the eight sub.

5. medication availability. with each child scale incorporating expecta- ings to (1) achieve consensus ratings consistent with the purpose of tions consistent with child’s developmental level. Moderate anxiety about FA/reactions and by FA outcome expectations. 9. Generally on hand but have not practiced all environments. functioning for family members. BI represents a the scales.oxfordjournals. middle. 9. 1. No strategies/resistant to food avoidance avoidance potential accidental exposure. Parent and Child FA Anxiety are assessed and history of food reaction and positive FA testing within 18 months rated for individual parents and children. Unprepared for reaction. avoiding unwarranted restrictions on family members’ Finally. cooperating with treatment). 9. Alert to symptoms. own child’s symptom pattern. we discussed changes to improve the interview. anxiety revealed by responses regarding 1. minimization readiness appropriate to symptoms. Comprehensive understanding of FA reactions Family response Family members’ preparation for managing reactions. FA management scales). but one significant gap asthma. Balance between management/psychoso- cial adjustment Note. and FA-specific anxiety. including a verified (FAMComposite). . Children’s responses are before the study visit. Basic elements. 5. participation in extracurricular 5. scores below the mid-point of 5 indicate inadequate FA management.g. notifying adult. Composites are a mean of the subsequently listed subscales. structure and flow. availability of asthma medications if needed.and role-appropriate rewording of questions. reaction response readiness. Acknowledges symptoms/sufficient plan quality and availability of action plan. filled prescriptions for injectable epinephrine and antihista. (3) make indicated refinements to management behaviors and skills with other aspects of child and interview questions and follow-up probes and to rating scales. Clinically significant anxiety Child anxiety Child’s self-reported anxiety level. including response appropri. and mailings to members of a local FA support with eight dimensions that can be combined by taking the mean of group. ordering of questions. coherent plan Child response Child’s preparation for managing reactions. knowledge and use of food labels. Adequate management/less burden and family activities). Extreme avoidance/fear of dying Balanced Balance of attention to FA management and other developmental and fam. Written and verbal reaction response plan Parent anxiety Anxiety levels self-reported by parent. available at all times. Eligibility for the study required that families have a child the eight ratings to create an FA Management Composite 6–12 years old with physician-documented FA. 2015 ness of cross-contamination. Systematic. 1. A second. 1. awareness of 1. knowledge and use of food labels. and high anchor points FA management composite FA knowledge Knowledge of basic mechanisms of FA. aware. knowledge of symptoms and action plan. including response 1. Team meetings were then used to review team members’ rat. 1. awareness of poten. administer epinephrine. Each FAMAS subscale uses a 9-point scale.org/ at :: on September 16. 5.Development of the FAMAS 575 Table I. 1. Limited/hopeless regarding food avoidance tial for accidental exposure. specific indications 5. 1. Adequate understanding. and maintaining normative age. Poor understanding modes of exposure.g. quality and availability of action plan for fu. avoidance Downloaded from http://jpepsy. Adequacy of FA management is assessed lergy practices. Advocates for self in multiple settings Medication Have current. (2) use rating disagreements to identify unclear global judgment of how well the family has integrated requisite FA scale items or interview questions. 9. aware. anxiety revealed by responses re. 1. food avoidance strate. family life. such as behavior. 9. including relevant organ systems. Plan less than perfect. Not readily available availability mines.. Excellent grasp of FA Symptom Knowledge of reaction symptoms. and in 5. but could save child ture reactions. developmentally appropriate. 5. Imbalanced/child at risk/high FA burden integration ily issues (e. natural history. emotional adjustment. FA ¼ food allergy.. local private al- is presented in Table I. Always at hand and have practiced Alternate All alternate caregivers are informed of child’s FA. some inconsistencies 9. May be vague across alternate caregivers preparedness to respond to symptoms. Limited awareness assessment tion of symptom severity from mild to anaphylaxis. 9. and overall flow. grada. new sample of families was recruited via physician refer- An abbreviated version of the final FAMAS 9-point rating scales rals from the hospital pediatric outpatient clinic. 1. risks for reaction or death.. Do not inform or prepare caregivers gies. No evidence that FA produces anxiety garding specific management strategies and experiences with reactions 5. with higher scores indicating high (e. Knows primary symptoms of FA reaction of anaphylaxis 9.g. ratings. relationship with 5. 9. Good understandings of avoidance basics ness of cross-contamination. coherent/developmen- tally appropriate plan Family food Strategies for food avoidance at and away from home. 5. 9. 9. anxiety) or better (e. Denies or hides symptoms readiness ate to symptoms (e. Content and Scoring of the Food Allergy Management and Adaptation Scale (FAMAS) FAMAS subscales Description/specifications Low. The initial pilot phase ended when ratings were consistent and no further major refinements to the interview or rating scales were nec- essary to capture relevant content (Supplementary for FAMAS Participants for FAMAS Validation Study Interview). medications stored appropriately. and used preliminary rating scales to make initial rated separately for food avoidance. Expresses no anxiety due to FA specific management strategies and experiences with reactions and by 5. Moderate anxiety about FA/reactions FA outcome expectations.g. Coherent strategy across settings Child food Developmentally appropriate strategies for food avoidance. Children with unconfirmed FA.

meal preparation. questions rated on 7-point Likert scales.85. Children aged 8–12 completed questionnaires independently. 1997). Lushene. procedure that we followed. all video-recorded interviews were viewed Multidimensional Anxiety Scale for Children and rated independently using the scale guidelines by research team The MASC is a 39-item self-report clinical measure designed to as- members.91). and construct validity (Speilberger. Cronbach’s a for the younger Response Readiness children was . child or family engagement in the queried activity (scored as 8). The STAI-C was 5 is ‘get really scared. both physicians rated the edited portion of 77% (n ¼ 46) pectation of outcome for the child with FA (DunnGalvin et al.org/ at :: on September 16. the Extensive validity testing suggests that the STAI has good concur- parent(s) and child participated in an hour-long. ate the caregiver’s perception of the impact of the child’s FA on as- ing problems or faintness as indications for use (Arkwright & pects of daily family activities (e. video recorded in. For each item. child does not attend daycare. parents were asked to describe indications for administering epi. rent.83.. . while Cronbach’s a ¼ . Physicians used 5-point scales to make global rat. Children are asked to rate items using a 4-point scale ranging agement and behavioral health. and Trait t scores were used in this study..94 and .83 for 6. For the current study. internal consistency was examined separately for the Physician Global Ratings of Family Food Avoidance and Reaction younger children and those 8 years.86 and . a ¼ . respectively). Food Allergy Independent Measure ings of family food avoidance and family reaction response readiness The Food Allergy Independent Measure (FAIM) consists of four (Supplementary for physician rating guidelines).’ how worried or nervous do you get when used to provide data on the children’s general anxiety. Interrater re. “on a scale from 1 to 5 where 1 is ‘don’t worry at all’ and “calm. convergent. Interrater reliability. The STAI dem- tionnaire completion. The MASC has demon- sensus scores were generated. supervised by research assistants (RAs). The State-Trait Anxiety Inventory (STAI) is a 40-item instrument that measures an individual’s stable trait and transient state anxiety. (3) applied enough Food Allergy Impact Scale pressure to trigger the device. study was good (a ¼ . independently reviewed video re- cordings of interviews edited to include only information relevant to FA management. a ¼ . (2) removed the safety cap. Ratings were recorded for reliability from “never true” to “often true” (March.g. 1973). 2006). parents were asked additional questions to statements that begin with “I feel . read to them and their response recorded (Papay & Hedl. for FA impact pass/fail (ICC ¼ . with a pass the child’s FA using 7-point Likert scales.g. onstrated excellent internal consistency for mothers (n ¼ 57. The FAIS is a 32-item questionnaire with eight subscales that evalu- ommended time after the device was triggered. For reliability as. State-Trait Anxiety Inventory for Children dren’s responses. For the entire sam- Two board certified allergists using clinical judgment. Anxiety Inventory for Children (STAI-C) and Multidimensional Anxiety Scale for Children (MASC) questions and recorded the chil. FAIS .. Adequate reliability and tions to assess the parent’s emotions in response to FA reactions. the child was separated from the parent(s) for ques.and 7-year-olds. indicate if FA prevents based on correct demonstration of all five components. For the cur- Measures rent study. and (5) listed breath.90) for the State and Trait subscales. and final con- scores indicate higher levels of anxiety. After their demonstration.85 for the 8–12-year-olds. a dure). 1997)..g. scored as missing).83 for State and Trait subscales. & Jacobs. STAI State and Trait t scores were used in this study. and . The STAI-C is a 40-item questionnaire for which children respond With the child absent. view of the FAMAS rating scales. and (4) respond- ing effectively when accidentally exposed.oxfordjournals. “very calm. reliably score whether the caregiver (1) knew the correct site to in- ject epinephrine. (3) dying when accidentally exposed. Raters were three pediatric psychologists (two of whom sess a broad range of anxiety symptoms for children aged 8–18 also conducted interviews) and two RAs with training in FA man- years. caregivers rate the impact of more appropriate device use. of the interview. State-Trait Anxiety Inventory mental delay were excluded. and for fathers (n ¼ 14. Analyses for the present study used the sum of activities). The RA then videotaped the parent demonstrating the use of a trainer STAI-C has been used with first and second graders by having it version of an auto-injectable epinephrine device (Epi-Demo proce. on daycare. Parents rate for their child the class correlations (ICC).g. Greater MASC calculation before discussion of rater disagreements. terview conducted by one of two clinical psychologists. ” by choosing one of three privately that might have been uncomfortable in the presence of the answers reflecting varying levels of comfort (e.. van der Velde et al. parents completed questionnaires. EPI-Demo ratings for question 3 concerning parent perception regarding The videotaped segments documenting the caregiver’s response to chance of child’s death owing to FA was included as a concurrent the epinephrine task were rated by two study personnel trained to measure of parent FA specific anxiety. . and assesses the parent’s ex- sessment.. non-English-speaking families.” “not calm”) (Spielberger et al. as well as a pass/fail score. was .84 for reaction response readiness and chance of: (1) accidental exposure. (2) severe reaction when acciden- . Study Procedures The STAI provided self-report data on general anxiety levels. tally exposed. Vagg. 2008.93). 1978). without re- ple. 2006). RAs read the questions for the State-Trait and .92) and mark that the item does not apply to their child (e. and children with severe develop. strated acceptable psychometric properties (March. of the interview recordings.76 for family food avoidance. computed as intra. 1973). 2010). subscale scores were related to number of FA per child correctly performed items. (4) left the needle in the skin for rec.576 Klinnert et al. Internal consistency in the current sure they were using a familiar one. Gorsuch. After parental informed consent and child assent were obtained. or liability was computed for both scores: sum correct (ICC ¼ . Finally. STAI-C State your child is having FA symptoms?”) followed by open-ended ques. family social Farragher.” child (e. respectively. MASC Total Anxiety t scores were used in the current study. 2015 validity have been demonstrated (Spielberger et al. An Downloaded from http://jpepsy. Parents were allowed to choose among several devices to en. Following study visits. At the end 1970. with higher scores corresponding to (Bollinger et al... 1973). nephrine to their child. divergent.. Spielberger.

aEthnicity data missing for two subjects.96. this supported Hypothesis 2. Not Hispanic or Latino 50 (86) Child’s age at diagnosis (years) 2.91–.3 6 2. and Cohen’s d was calcu- lated as a measure of effect size. that child FA FAs. using an independent Not married 5 (8) samples t test with unequal variances. Analyses were performed using JMP 10. caregiver-supervised social activities. included all FAIS scales showed that caregiver-supervised child so- tween scale points 5 and 6. FAMComposite scores differed for families who passed were intercorrelated. SD ¼ 1. Less than college degree 11 (18) ing Cronbach’s alpha on standardized variables. were initially used to assess relationships between FAMAS scales and validity measures with continuous distributions. . Table III). Asthma 35 (58. Mean scores for the anxiety subscales and BI fell be. caregiver. 2004). 18% by anxiety ratings were correlated with general anxiety scores. Child diagnosed with other allergic disease ternal consistency for mothers. However. a ¼ .Development of the FAMAS 577 subscale scores were calculated by taking the mean of item ratings. Regression SAS version 9. The FAQL-PB has demonstrated excellent internal consistency Number of families reporting anaphylaxis 33 (55) and test–retest reliability (Cohen et al. measured with the FAQL-PB. However. For both parents. The FAQL-PB total Number of anaphylactic reactions 1.g. otherwise subscale scores were considered missing.31. ated with STAI-C State and Trait scores and with MASC total anxi- 27% had two.99. Spearman’s raw correla- scale). SPSS version 22 and SD ¼ 0. as mother FA anxiety rat- present for the interview identified themselves as the primary FA ings were not significantly associated with STAI scores. For FAMAS Less than college degree 5 (8) subscales. and the remainder had three or more documented ety t scores (Table IV). garding expectation of death as FA outcome (Table IV).00. Descriptive analyses revealed correlations among number of FAs. Fail: M ¼ 6.6 ing child to camp). collinearity was examined and found not to be a limiting factor. which (a ¼ . The FAMComposite had excellent internal consistency total number of FA. p ¼ .98.oxfordjournals. Female 21 (35) family relations. 2004). Interrater reliability was excellent for cial activities.3). Higher scores indicate increasing caregiver bur- Number of food allergies 3.34. Table II. 2015 a ¼ .33.. analyses showed that physician ratings of family Food Avoidance and of reaction Response Readiness as well as Epi-Demo scores were significantly related to FAMComposite after controlling for Results child age and number of FAs (Table IV). the mean and range of raters’ ICCs were Father’s highest level of education calculated for each scale. Pass: M ¼ 7. and demonstrated excellent in. particularly for the subscales comprising the FAMComposite tions revealed relationships between higher BI and lower scores on a (Table III). Internal consistency was determined us. were entered together in a model after multi.. the Epi-Demo compared with those who failed.6 number of FAIS scales (Table IV). FAMAS ratings of Child FA Anxiety were significantly associ- documented FA (Table II). and for fathers. The mean score for the FAMComposite was 6.0005 (t test based on unequal variances.49–. The validation sample included 60 families with physician. Parents’ marital status Married 55 (92) ents who passed versus failed the Epi-Demo. pairwise ICCs were calculated for each rater compared College or graduate degree 55 (92) with consensus scores.0 6 1. adjusting for child age and supported. and Mother’s highest level of education based on absolute agreement for dichotomous items. a ¼ . and three children (5%) by their fathers.8 eight subscales exceeding Cronbach’s a of . Child race Asian 1 (2) Black 2 (3) Food Allergy Quality of Life-Parent Burden Questionnaire White 51 (85) The FAQL-PB measures the impact of FA on health-related QoL of More than one race 6 (10) caregivers (Cohen et al. with seven of Child age 8. Multiple linear regressions were used to regress the Our first hypothesis regarding validity for the FAMComposite was FAMAS subscales on validity measures.91). and meal preparation were the signif- FAMAS subscales (ICC range: . FAMAS validity College or graduate degree 49 (82) testing included a comparison of FAMComposite scores for par. eating outside the home. Cohen’s d ¼ 1. The multiple scale scores of the FAIS.54–. a ¼ . Spearman correlation coefficients Note. and Validity of the FAMAS scale scores. Internal consistency for the FAIS was adequate for this sample.13).org/ at :: on September 16.3) Downloaded from http://jpepsy.85 for fathers (a ¼ .54). a regression model that (SD ¼ 1. send.60 for mothers Child gender (a ¼ . Mean FAMAS subscale scores were generally high relative to the Finally. All mothers mothers.7 6 1 score was used for the current study. age. Most children (77%) were accompanied by mothers.49). Validity was examined for the 57 families with mothers mother FA anxiety was strongly associated with the FAIM query re- present.95 (n ¼ 12).93 (n ¼ 57). t(54) ¼ 3. family relations. Using a 7-point scale.8 den. and Male 39 (65) seven of eight subscales exceeding a of . icant predictors for BI scores.73..3. Participant and Family Characteristics Responses were required for at least half of constituent subscale Variable Mean 6 SD or N (%) items. Atopic dermatitis 27 (45) Caregiver(s) participating in study Mother only 46 (77) Overview of Statistical Analyses Father only 3 (5) Interrater reliability was assessed with two-way. Twenty percent of children had one FA. single-measures Both parents 11 (18) ICC based on consistency in response for Likert-scale items.7 6 1. Hypothesis 2 was not supported. parents are Child ethnicitya asked to indicate how their child’s FA has limited or troubled them Hispanic or Latino 8 (14) during activities of daily living (e. higher BI was significantly associated with better mater- conceptually determined a priori scale midpoint (5 on a 9-point nal FA QOL.59.

8.0 (5.9 (1.15 0. there has been no means of conceptualizing or their management is an additional burden for affected families assessing families’ overall management and overall adaptation to (Cummings.21 School or structured activities 52 0.8) 5.07 <.99 6.7 (2.0 (5.97 0.0) Symptom assessment 60 0. et al.98 5.99 7.1 (1.0) Child food avoidance 60 0.1) 7.0) 6.6 (1.0) Medication availability 60 0.99 7. 7. 9. 7.001 STAI-C Trait 56 0.026 .0) Family response readiness 60 0.99 6. 7.0.99 6. FA ¼ food allergy. King. predictors are validity measures.3 0.0 (6.5. b is regres- sion coefficient.5 (1.6) 8.7) 5.15 0.0.97 0. c Data were incomplete for two children’s STAI-C State and one child’s STAI-C Trait.0.001 Physician global rating—response readiness 57 0.0 (6.0.1) 7. Knibb. Outcomes are FAMAS constructs.99 5.0.0) 5.0) Child response readiness 60 0. Descriptive Statistics and Interrater Reliability for Food Allergy Management and Adaptation Scale (FAMAS) Subscale Scores FAMAS subscales n Interrater reliabilitya Scores: Entire sample (n ¼ 60) Scores: Validation sample (n ¼ 57) Mean Range Mean (SD) Median (Q1.44 FAIMe (chance death) 56 0.6) Mother FA anxiety 57 0.94–0.6) 5.9.15 0.0 (5. 8.0.0) 6.95–0.7) 6.06 Caregiver-supervised child social activity 52 0. f FAIS subscale scores entered together in regression equation.9 (6.9 (1. FAIM ¼ Food Allergy Independent Measure.88–0.098 . 8.0) 6.689 <. 7. subjects’ scores on FAIS excluded when unscorable because more than half of subscale items had missing data owing to item not applying for family.0 (6.1) 7.4 (1.11 0.35 0.97–0.0.0.98 0.018 . STAI-C ¼ State-Trait Anxiety Inventory for Children.99 0.98–0. e One mother did not complete FAIM. 7. 7.1) 7.6 (1.0) Father FA anxietyb 14 0. 8. FA ¼ food allergy.6 (1.39 0. 7.4) 8.0.6) 6.9) 7. 8.0) 6.5) 8.95 0.3) 6.01 Mother FA anxiety STAI State 57 0.31 0.001 Food allergy anxiety Child FA anxiety STAI-C Statec 55 0.0 (7. 2011) and FA-related QoL.1 (1.0 (5.98 0.07 <. an inter- to children’s food allergies requires taking adequate preventive and view-based assessment of families’ adaptation to children’s food al- management measures while promoting appropriate developmental lergies.0 (1.98 0. 8.43 0.0) 5.0 (7.3) 7.6 (1.0 (1.0 (6.0.94 0.9) 6. STAI ¼ State-Trait Anxiety Inventory.0) Child FA anxiety 60 0.6) 6.52 0.96–0. 8. 7.7) 6. Table IV.9 (5.56 STAI Trait 57 0. FAIS ¼ Food Allergy Impact Scale.0) FA management composite 6. a Spearman’s q.75 1.42 Autonomous social activities 52 0.7 (1.0 (7.99 6. 7.34 0. 8.902 <.5 (1.7 (1.578 Klinnert et al. d One child did not complete MASC. 7.0.0) 7.0 (1.98 5. By using expert input and an array of self-report measures. number of raters varied for Downloaded from http://jpepsy.0 (4. FAMAS Concurrent Validity Construct Validity measure N qa bb p FA management composite Physician global rating—food avoidance 57 0. .7 (1.7 (1.4 (1.11 Employment and finances 52 0.04 Stress and free time 52 0.0.3 0.11 0.1.4 (1. 7.0) 5.0.0.98 0. b Linear regression models adjusted for child’s age and number of food allergies.91–0.0) 6.99 5. p is significance value for regression coefficient. 2010).97 0.0 (5.0.0) Alternate caregivers 60 0..9 (1.5 (3. 7. 7.0 (5.0. 2015 subscales.332 .0 (5.001 Family relations 52 0.9) 7. Table III.04 Family social activities 52 0.5 (2.2 (1.45 0.2) 6.9) 6. Q3) Mean (SD) Median (Q1.0) Balanced integration 60 0.0) Family food avoidance 60 0.039 <.95–0.5) 7.001 EPI-demo: sum of passed items 57 0. resulting in n ¼ 52.99 4.279 . Q3) FA knowledge 60 0.oxfordjournals. MASC ¼ Multidimensional Anxiety Scale for Children.7 (1. 8..99 6.377 . FAQL-PB ¼ Food Allergy Quality of Life–Parent Burden. Balanced family adaptation children’s food allergies.33 0.0 (4.001 MASC total t scored 56 0.0 (5. Although instruments exist for assessing Food allergies are increasingly prevalent (Gupta et al.95 0.3) 7. unadjusted. b Fathers’ FA anxiety scores not included in the validation sample owing to small sample size.97 0.0. and social activities.org/ at :: on September 16.0 (5.0 (4. as well as promoting emotional equilibrium for Discussion parents and children. a Mean and range of pairwise intraclass correlations calculated for scores by each of five raters compared with consensus scores.4) 3.505 .0) 6.0.8) 5.565 <.92–0.174 .3. This article describes the FAMAS.0.61 Note.407 <.0 (5.0.5.6) 6.27 0.89–0.0 (6.96–0. 5. 7.065 .4) 7.69 1.0) Note.001 Balanced integration FAQL–PB (mother) 57 0.01 FAIS (mother)f Meal preparation 52 0.0 (6.97–0.042 .696 .

A. indicating different adaptation patterns. rather than represent.Development of the FAMAS 579 physician ratings of families’ FA management.08. 2010. R.. E. & terms of ethnic diversity and SES. A. & Hourihane. (2010).2009. Supplementary data can be found at: http://www. S.. N. S.org/. j.oxfordjournals. 2013). L.09. the adequacy of FA management and the frequency of debilitating hensive assessment of families’ strategies for preventing food expo. & Cohen.1399-3038.. parents to effectively administer intramuscular adrenaline to food allergic ties such as sleepovers or camp. J. Duhig.1016/j. This lack of association may indicate children. (2003). suggesting interview ratings cap. C.... M. & Farragher. doi: http://dx.. J. Knibb. interview ratings of high BI. our study did not include prospective data for and Immunology. epinephrine when reactions occur. The psy- over longer time periods. D. J.. inclusion of fathers in future work may provide ad. rather than representing a general tendency toward anxiety. spectives of alternate FA caregivers. ditional perspectives regarding the distribution of FA management 1159–1163. . R. J. 2008. speakers’ bureau with Nestle Nutrition Institute. and BI varying subscale scores.. some existing research has focused on the extent of general questions to identify families at high-risk of poor management and anxiety in this population (Herbert & Dahlquist. (2010). S. FA anxiety in the broader population. before initiating treatment. L. Although we Assessment of quality of life in children with peanut allergy. Inc. supported by the identification of subgroups of families based on ing this instrument: FA management. Pediatric implemented a careful two-phase validation process. and analyses are underway to test this hypothesis.1016/j. King. Knight. The impact of food allergy on the daily activities of of pediatric FA (Cummings. general anxiety levels were not associated with Supplementary Data interview ratings of FA anxiety among mothers of children with FA. or with restrictions on autonomous social activi. Erlewyn-Lajeunesse.jpepsy. Journal of Allergy and Clinical children’s mothers. While we provided substantial support for the FAMAS’ quality of life and anxiety in children and their mothers. C. G. grate the tasks of FA management into their overall routines and Conflicts of interest: Dr. agnosis and management of food allergy in the United States: Report of the forts to involve fathers. S1–S58. (2006). et al. P. Future efforts could include the develop- Perhaps driven by clinical impressions of FA patients and care.2006. 2010). anai.. Journal of Allergy and Clinical Immunology.jaci. 2005). 126. 21. K. & Lucas. Fields.. H.oxfordjournals. Higher BI ratings were marginally related to fewer re- strictions on families’ social activities. the preponderance of high FA management scores in 415–421..10. for the score was strongly related to preparation for using auto-injectable evaluation of families’ FA adaptation at baseline and follow-up.x posed to child level functioning at school and with peers. & Sicherer. R. have proposed that the validity of the FAMAS instrument would be port for the reliability and validity of the three constructs constitut. BI ratings were not associated with school or Arkwright. Sonntag. Klinnert (Principal Investigator) and by the National their child’s death may be an indicator of difficulty in adjusting to Institutes of Health/National Center for Advancing Translational Sciences children’s FA. 14. 378–382. Boyce. and on children’s social activities. Higher BI ratings were also related to less impairment in family rela. A.003 size of our overall validation sample was small and was limited in Bollinger. such as family outings or activi. Dr. tions owing to FA. doi: 10. S. Annals of Allergy.. such as day care providers and Roberts. In this study.007 childhood chronic illness (Phares. A. doi: 10. and also to determine such as behavioral health specialists or RAs. Atkins discloses work with DBV Technologies— maintain appropriate developmental expectations and activities. B. We behavior relevant for FA management. The instrument may be useful sure as well as their preparedness for FA reactions. Noone.1016/j..org/ at :: on September 16.00975. Colorado. C. children and their families. such as occurrence of reactions Cummings. Asthma and Immunology.. or a standard set of givers. Dahlquist.1111/j. K. 96. ment of a briefer version for routine clinical use. emotional adjustment.anai.006 tasks within the family. 114. Knibb. or a family’s ability to inte. and demonstration of Further studies are needed to test the validity of the FAMAS. (2010). Pediatric Allergy concurrent validity.org/10. Future studies are Validity of the FAMComposite of multiple behavioral domains needed to test the validity of the FAMAS among a more ethnically requisite for adequate FA management was strongly supported. of the conceptualization and the instrument. Correlations be- tween interview ratings of FA anxiety and parental assessment of Funding the chance that their child would die from a FA reaction also sup. the sample Allergy and Immunology. (2004).00392. doi: 10. of FA into family life. The composite in clinical trials of FA medical and behavioral interventions. King. such as playing with friends. & NIAID-Sponsored Expert Panel. J. 17. Pharmaceuticals. sole responsibility and do not necessarily represent official NIH views. Future studies might also include the per- Cummings. doi: 10. M. Thus. M. et al. Pediatric Allergy and Immunology.1399-3038. M. Management of nut allergy influences teachers. chosocial impact of food allergy and food hypersensitivity in children. Mudd. 2009)..1111/ that the BI scale assesses processes at the family system level as op. a common limitation in studies McKenna. Despite ef.. J. Development of a questionnaire to measure quality of life in families with a child with food allergy. S. Regeneron associated with maternal ratings of lower FA-related parent burden. Dillinger. parents’ very high anxiety about HD059043 to Mary D. Knibb. CTSA Grant Number UL1 RR025780. were MILES: Participation on Drug Safety Monitoring Board. participating parents were primarily the NIAID-sponsored expert panel.. The current study has a number of limitations. References ties with relatives. (2006). the FAMAS might be a useful diagnostic instrument medication administration. can provide a compre.. Avery.doi. we found that FA anxiety observed in children during the interview was related to self-report of general Downloaded from http://jpepsy. M.2010. 227–229. 586–594. suggesting that mothers’ anxiety may be unique to FA. & Lucas. doi: 10. J. Factors determining the ability of structured activities. Fleischer discloses consultancy with LabCorp. King. Although this is typical in many studies of Immunology. This work was supported by a grant from the Eunice Shriver National port this perspective.. we have provided strong sup. Contents are the authors’ Lastly.. O’B.. Lopez. Guidelines for the di- ing average families’ experience with FA management. Given that mortality rates for pediatric FA are Institute of Child Health and Human Development Grant number R21 very low (Umasunthar et al. Although the interview format may be labor intensive for standard tured behavioral skills relevant to reaction management such as clinical practice. Erlewyn-Lajeunesse.x assessment of predictive validity. 2015 anxiety. This and socioeconomically diverse sample to address the generalizability indicates that trained interviewers without medical backgrounds. R.. M. LeBovidge negative outcomes to enhance care for families of children with FA.2010. L. Munoz-Furlong.1016/S1081-1206(10)60903-9 this study may be owing to a select sample. J. A.. However. Kamboukos. R.

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