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Development of a Disease-Specific Instrument to Measure Quality of Life in Adolescents with Food Allergy
AB214 Abstracts
J ALLERGY CLIN IMMUNOL FEBRUARY 2010
837
Food Allergy Preparedness K. A. DeMuth; Emory University, Atlanta, GA. RATIONALE: Food allergy affects 6-8% of the pediatric population. Preparedness is key to improving outcomes for food allergy reactions due to inadvertent exposures. METHODS: Questionnaires regarding food allergy readiness were given to consecutive individuals presenting for evaluation for food allergy. RESULTS: Twenty-one children with food allergy mean age 6.9 (+ 4.8) completed the questionnaire. One hundred percent had been prescribed epinephrine pens, and 86% were trained in epinephrine pen technique. Eighty-one percent indicated that the epinephrine pen was kept with them at all times; however, 21% of those did not have the epinephrine pen present when completing the questionnaire. Sixty-two percent of the school-aged children reportedly did not have their epinephrine pen with them during lunch, and 46% did not have their epinephrine pen with them when eating snacks. Thirty-eight percent of the individuals who did not always have the epinephrine pen with them when eating lunch or snacks stated the epinephrine pen was kept in the school office or nurses office. CONCLUSIONS: Many school aged children do not have the epinephrine pens present with eating lunch or snacks despite caregivers reporting the importance of having epinephrine pens available at all times. It is necessary to reinforce that epinephrine pens should be readily accessible to a child with food allergy, especially when eating.
METHODS: A food allergy educational program consisting of a video, instructional forms and supporting materials were developed through parent focus groups (n54, 36 participants), opinion from stakeholders and serial review of drafted materials by parents of food-allergic children (n517). A final educational program was presented to parents with a child having a previous diagnosis of food allergy, previously prescribed an epinephrine autoinjector, but without prior evaluation at a food allergy specialty center. Pre-post knowledge surveys (15 questions), treatment comfort (7 point Likert), autoinjector demonstration (6 point scale) and satisfaction surveys (7 point Likert) were administered. RESULTS: Participants were sixty parents (88% mothers; 78% White, 17% Black/AA; child mean age, 3.6 yrs). After receiving the educational program, mean comfort level in treating with epinephrine increased from 4.5 to 6.1 (p < 0.001), scores for autoinjection demonstration improved from 3.4 to 6 (p < 0.001) and knowledge tests increased from a mean score of 9.2 to 12.4 (p < 0.001). Evaluation scores included: learning a lot (58%), some (35%), a little (7%) or nothing (0%) and judging the materials as much better (70%), better (30%) or same/worse (0%) than previously used materials. On a 7 point Likert scale, all satisfaction categories queried were above a mean score of 6: straight-forward, organized, interesting, useful, relevant, and of use to recommend to others. CONCLUSIONS: We have developed an educational program for parents of children with food allergies that demonstrated effectiveness and high levels of satisfaction.
838
840
TUESDAY
Development of a Disease-Specific Instrument to Measure Quality of Life in Adolescents with Food Allergy E. S. Resnick1, M. M. Pieretti1, J. Maloney1, S. Noone1, A. Mun˜oz-Furlong2, S. H. Sicherer1; 1Mt. Sinai School of Medicine, New York, NY, 2 Food Allergy & Anaphylaxis Network, Fairfax, VA. RATIONALE: To develop a food allergy quality of life (QOL) assessment tool for US adolescents. METHODS: Initial steps toward development of the instrument included expert opinion, literature review and 3 adolescent focus groups (Baltimore, Chicago and New York) resulting in an 88-item impact assessment questionnaire (IAQ). The IAQ was completed by 52 adolescents for effect scoring; final instrument questions were determined through analysis of impact scores and item reduction based upon thematic similarity and correlations. A resulting 17-item instrument was evaluated for face validity by 17 participants. The final instrument was completed by participants age 13-19 years via an internet link on the Food Allergy & Anaphylaxis Network (FAAN) website. Paper surveys were also distributed at a FAAN conference. Items were scored on a 7 point Likert scale. A score of 0 corresponded to ‘‘not troubled/limited,’’ 3 to ‘‘moderately troubled/limited,’’ and 6 to ‘‘extremely troubled/limited.’’ RESULTS: 203 adolescents completed the instrument (97% of those who initiated). Areas most troubling to teens included: schools not adequately educating others about food allergies (mean score 2.66); not being able to eat what others were eating (2.67); food allergies limiting social activities (mean score, 2.73); and being a burden to others due to food allergies (2.77). Participants felt most limited by food allergies affecting their choice of restaurant (3.93) and vacation destination (2.87). CONCLUSIONS: While developing a food allergy quality of life assessment tool for US adolescents, we identified multiple social and emotional concerns that could be targeted for adolescent counseling. Validation of the instrument is ongoing.
839
Development of a Food Allergy Educational Program: Baseline Satisfaction and Efficacy M. Groetch1, L. Christie2, P. Vargas3, S. Carlisle2, S. Noone1, S. Jones2, S. Sicherer1; 1Mt. Sinai School of Medicine, New York, NY, 2University of Arkansas for Medical Sciences/Arkansas Children’s Hospital, Little Rock, AR, 3Arizona State University, Glendale, AZ. RATIONALE: Validated educational materials for families with food allergic children are lacking.
Epinephrine Auto-injector Self-carry Practice in Children with Peanut Allergy J. Fragapane1, M. Ben-Shoshan2, R. Alizadehfar2, L. Soller1, L. Joseph1,3, L. Harada4, C. Fortin5, M. Allen6, A. E. Clarke1,7; 1Division of Clinical Epidemiology, Department of Medicine, McGill University Health Center, Montreal, QC, CANADA, 2Division of Pediatric Allergy and Clinical Immunology, Department of Pediatrics, McGill University Health Center, Montreal, QC, CANADA, 3Departments of Epidemiology and Biostatistics, McGill University, Montreal, QC, CANADA, 4Anaphylaxis Canada (AC), Toronto, ON, CANADA, 5Association Que´be´coise des Allergies Alimentaires (AQAA), Montreal, QC, CANADA, 6Allergy/ Asthma Information Association (AAIA), Montreal, QC, CANADA, 7 Division of Allergy and Clinical Immunology, Department of Medicine, McGill University Health Center, Montreal, QC, CANADA. RATIONALE: To characterize epinephrine auto-injector (EAI) self-carry practice at school in children with peanut allergy. METHODS: Children 5 years with an allergist-confirmed diagnosis of peanut allergy and prescribed an EAI were recruited from the Montreal’s Children Hospital and Canadian food allergy advocacy organizations. RESULTS: Of 953 parents queried, 706 responded (74.1% response rate); the children’s mean age was 10.0 years (range 5.0 to 18.0). Parents report EAI self-carry in school in 483 children (68.4% [95%CI, 64.8-71.8%]). Only 79.7% [75.9-83.1%] of these 483 parents believe their child actually knows how to use the EAI. The mean age at which the EAI was first selfcarried in school was 5.8 years [95%CI, 5.5-6.0]. The decision to self-carry EAI was made most often by the child’s parents (41.8% [37.5-46.3%]). In the 223 children not self-carrying the EAI, it is most often located in the classroom/school office (71.7% [65.5-77.3]). In those keeping the EAI in the classroom/office, only 65.0% [57.3-72.0%] have personnel trained in EAI administration always available. Among parents of children not carrying the EAI, 33.2% [27.3-39.6%] report a school policy forbidding EAI self-carry, and 23.3% [18.2-29.3%] do not know the school policy. CONCLUSIONS: Over 30% of children 5 years with a potentially lifethreatening allergy do not self-carry an EAI, and of those who do carry, 20% do not know how to use it. Given the lack of consensus on the appropriate age at which a child should start carrying an EAI, it is crucial to establish guidelines and school policies related to EAI self-carry practices.
J ALLERGY CLIN IMMUNOL FEBRUARY 2010
837
Food Allergy Preparedness K. A. DeMuth; Emory University, Atlanta, GA. RATIONALE: Food allergy affects 6-8% of the pediatric population. Preparedness is key to improving outcomes for food allergy reactions due to inadvertent exposures. METHODS: Questionnaires regarding food allergy readiness were given to consecutive individuals presenting for evaluation for food allergy. RESULTS: Twenty-one children with food allergy mean age 6.9 (+ 4.8) completed the questionnaire. One hundred percent had been prescribed epinephrine pens, and 86% were trained in epinephrine pen technique. Eighty-one percent indicated that the epinephrine pen was kept with them at all times; however, 21% of those did not have the epinephrine pen present when completing the questionnaire. Sixty-two percent of the school-aged children reportedly did not have their epinephrine pen with them during lunch, and 46% did not have their epinephrine pen with them when eating snacks. Thirty-eight percent of the individuals who did not always have the epinephrine pen with them when eating lunch or snacks stated the epinephrine pen was kept in the school office or nurses office. CONCLUSIONS: Many school aged children do not have the epinephrine pens present with eating lunch or snacks despite caregivers reporting the importance of having epinephrine pens available at all times. It is necessary to reinforce that epinephrine pens should be readily accessible to a child with food allergy, especially when eating.
METHODS: A food allergy educational program consisting of a video, instructional forms and supporting materials were developed through parent focus groups (n54, 36 participants), opinion from stakeholders and serial review of drafted materials by parents of food-allergic children (n517). A final educational program was presented to parents with a child having a previous diagnosis of food allergy, previously prescribed an epinephrine autoinjector, but without prior evaluation at a food allergy specialty center. Pre-post knowledge surveys (15 questions), treatment comfort (7 point Likert), autoinjector demonstration (6 point scale) and satisfaction surveys (7 point Likert) were administered. RESULTS: Participants were sixty parents (88% mothers; 78% White, 17% Black/AA; child mean age, 3.6 yrs). After receiving the educational program, mean comfort level in treating with epinephrine increased from 4.5 to 6.1 (p < 0.001), scores for autoinjection demonstration improved from 3.4 to 6 (p < 0.001) and knowledge tests increased from a mean score of 9.2 to 12.4 (p < 0.001). Evaluation scores included: learning a lot (58%), some (35%), a little (7%) or nothing (0%) and judging the materials as much better (70%), better (30%) or same/worse (0%) than previously used materials. On a 7 point Likert scale, all satisfaction categories queried were above a mean score of 6: straight-forward, organized, interesting, useful, relevant, and of use to recommend to others. CONCLUSIONS: We have developed an educational program for parents of children with food allergies that demonstrated effectiveness and high levels of satisfaction.
838
840
TUESDAY
Development of a Disease-Specific Instrument to Measure Quality of Life in Adolescents with Food Allergy E. S. Resnick1, M. M. Pieretti1, J. Maloney1, S. Noone1, A. Mun˜oz-Furlong2, S. H. Sicherer1; 1Mt. Sinai School of Medicine, New York, NY, 2 Food Allergy & Anaphylaxis Network, Fairfax, VA. RATIONALE: To develop a food allergy quality of life (QOL) assessment tool for US adolescents. METHODS: Initial steps toward development of the instrument included expert opinion, literature review and 3 adolescent focus groups (Baltimore, Chicago and New York) resulting in an 88-item impact assessment questionnaire (IAQ). The IAQ was completed by 52 adolescents for effect scoring; final instrument questions were determined through analysis of impact scores and item reduction based upon thematic similarity and correlations. A resulting 17-item instrument was evaluated for face validity by 17 participants. The final instrument was completed by participants age 13-19 years via an internet link on the Food Allergy & Anaphylaxis Network (FAAN) website. Paper surveys were also distributed at a FAAN conference. Items were scored on a 7 point Likert scale. A score of 0 corresponded to ‘‘not troubled/limited,’’ 3 to ‘‘moderately troubled/limited,’’ and 6 to ‘‘extremely troubled/limited.’’ RESULTS: 203 adolescents completed the instrument (97% of those who initiated). Areas most troubling to teens included: schools not adequately educating others about food allergies (mean score 2.66); not being able to eat what others were eating (2.67); food allergies limiting social activities (mean score, 2.73); and being a burden to others due to food allergies (2.77). Participants felt most limited by food allergies affecting their choice of restaurant (3.93) and vacation destination (2.87). CONCLUSIONS: While developing a food allergy quality of life assessment tool for US adolescents, we identified multiple social and emotional concerns that could be targeted for adolescent counseling. Validation of the instrument is ongoing.
839
Development of a Food Allergy Educational Program: Baseline Satisfaction and Efficacy M. Groetch1, L. Christie2, P. Vargas3, S. Carlisle2, S. Noone1, S. Jones2, S. Sicherer1; 1Mt. Sinai School of Medicine, New York, NY, 2University of Arkansas for Medical Sciences/Arkansas Children’s Hospital, Little Rock, AR, 3Arizona State University, Glendale, AZ. RATIONALE: Validated educational materials for families with food allergic children are lacking.
Epinephrine Auto-injector Self-carry Practice in Children with Peanut Allergy J. Fragapane1, M. Ben-Shoshan2, R. Alizadehfar2, L. Soller1, L. Joseph1,3, L. Harada4, C. Fortin5, M. Allen6, A. E. Clarke1,7; 1Division of Clinical Epidemiology, Department of Medicine, McGill University Health Center, Montreal, QC, CANADA, 2Division of Pediatric Allergy and Clinical Immunology, Department of Pediatrics, McGill University Health Center, Montreal, QC, CANADA, 3Departments of Epidemiology and Biostatistics, McGill University, Montreal, QC, CANADA, 4Anaphylaxis Canada (AC), Toronto, ON, CANADA, 5Association Que´be´coise des Allergies Alimentaires (AQAA), Montreal, QC, CANADA, 6Allergy/ Asthma Information Association (AAIA), Montreal, QC, CANADA, 7 Division of Allergy and Clinical Immunology, Department of Medicine, McGill University Health Center, Montreal, QC, CANADA. RATIONALE: To characterize epinephrine auto-injector (EAI) self-carry practice at school in children with peanut allergy. METHODS: Children 5 years with an allergist-confirmed diagnosis of peanut allergy and prescribed an EAI were recruited from the Montreal’s Children Hospital and Canadian food allergy advocacy organizations. RESULTS: Of 953 parents queried, 706 responded (74.1% response rate); the children’s mean age was 10.0 years (range 5.0 to 18.0). Parents report EAI self-carry in school in 483 children (68.4% [95%CI, 64.8-71.8%]). Only 79.7% [75.9-83.1%] of these 483 parents believe their child actually knows how to use the EAI. The mean age at which the EAI was first selfcarried in school was 5.8 years [95%CI, 5.5-6.0]. The decision to self-carry EAI was made most often by the child’s parents (41.8% [37.5-46.3%]). In the 223 children not self-carrying the EAI, it is most often located in the classroom/school office (71.7% [65.5-77.3]). In those keeping the EAI in the classroom/office, only 65.0% [57.3-72.0%] have personnel trained in EAI administration always available. Among parents of children not carrying the EAI, 33.2% [27.3-39.6%] report a school policy forbidding EAI self-carry, and 23.3% [18.2-29.3%] do not know the school policy. CONCLUSIONS: Over 30% of children 5 years with a potentially lifethreatening allergy do not self-carry an EAI, and of those who do carry, 20% do not know how to use it. Given the lack of consensus on the appropriate age at which a child should start carrying an EAI, it is crucial to establish guidelines and school policies related to EAI self-carry practices.