Questionnaire on quality of life for pharmacoeconomic purposes (no.3)

Transcription

1 Oral immunotherapy clinic (OITC) Questionnaire on quality of life for pharmacoeconomic purposes (no.3) The following questionnaires concern the impact of food allergies on your life and your child s life. FAQLQ questionnaire (Europrevall) was specifically developed for children affected by food allergies. SF-6D questionnaire is a standardized questionnaire on quality of life associated to health in general (potentially applied to every kind of health problem). As part of your application to the OIT clinic at CHU Sainte-Justine, we are asking you to fill these questionnaires to the best of your knowledge. It is important to answer every question. Please note that questionnaires FAQLQ TF and SF-6D 12+ must be filled by the child. Your answers to these questionnaires WON T BE used to determine your eligibility nor your prioritisation at the clinic. They will be used only to measure the clinic performance and the impact of the treatment on patients and families quality of life, in order to better estimate needs to be met. Therefore, it is important that your answers reflect accurately your situation. Child s identification: Name: First name: Date of birth: # Health insurance card: Expiration date : 1/12

2 English Parent version (Teenagers) FAQLQ-PFT Food Allergy Quality of Life Questionnaire Parent Form Adolescents aged To cite the original English questionnaire: Knibb et al., unpublished To cite the Dutch translated questionnaire: van der Velde JL, Flokstra-de Blok BMJ, Hamp A, Knibb RC, Duiverman EJ, Dubois AEJ. Adolescent-parent disagreement on quality of life of food allergic adolescents; Who makes the difference? Allergy /12

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6 Please answer these questions with reference to the 7-point scale below. 0 = extremely unlikely 1 = very unlikely 2 = somewhat unlikely 3 = likely 4 = quite likely 5 = very likely 6 = extremely likely Question 1. What chance do you think your teenager has of accidentally ingesting the food to which they are allergic? 2. What chance do you think your teenager has of having a severe reaction if food is accidentally ingested? 3. What chance do you think your teenager has of dying from his/her food allergy following ingestion in the future? 4. What chance do you think your teenager has of effectively treating him/herself or receiving effective treatment from others (including Epipen administration) if he/she accidentally ingests a food to which he/she is allergic? 7-point Scale /12

7 English Teenager version FAQLQ-TF Food Allergy Quality of Life Questionnaire Teenager Form (13-17 years) To cite this questionnaire: Flokstra-de Blok BMJ, DunnGalvin A, Vlieg-Boerstra BJ, Oude Elberink JNG, Duiverman EJ, Hourihane JO, Dubois AEJ. Development and validation of the self-administered Food Allergy Quality of Life Questionnaire for adolescents. J Allergy Clin Immunol 2008 Jul;122(1): /12

8 The following questions concern the influence your food allergy has on your quality of life. Answer every question by marking the appropriate box with an x. You may choose from one of the following answers not barely slightly moderately quite very extremely How troublesome do you find it, because of your food allergy, that you must always be alert as to what you are eating? 2 are able to eat fewer products? 3 are limited as to the products you can buy? 4 must read labels? 5 have the feeling that you have less control of what you eat when eating out? 6 are less able to spontaneously accept an invitation to stay for a meal? 7 are less able to taste or try various products when eating out? 8 must check yourself whether you can eat something when eating out? 9 hesitate eating a product when you have doubts about it? 10 must refuse treats at school or work? 11 must be careful about touching certain foods? 12 must carry an epinephrine auto injector (e.g. EpiPen, Twinject, Anapen)? (If you don t have an epinephrine auto injector mark an x here ) 8/12

9 not barely slightly moderately quite very extremely How troublesome is it, because of your food allergy, that the ingredients of a food change? 14 that the label states: May contain (traces of).? 15 that the labeling of the bulk packaging (for example box or bag) is different than the individual packages? 16 that you have to explain to people around you that you have a food allergy? 17 that during social activities others can eat the food to which you are allergic? 18 that during social activities your food allergy is not taken into account enough? How frightened are you because of your food allergy of an allergic reaction? 20 of accidentally eating the wrong food? 21 to eat something you have never eaten before? Answer the following questions: How discouraged do you feel during an allergic reaction? 23 How disappointed are you when people don t take your food allergy into account? 9/12

10 FAIM The following four questions are about the chance that you think you have of something happening to you because of your food allergy. Choose one of the answers. This is followed by two more questions about your food allergy. Answer every question by putting an x in the box next to the proper answer never very small small fair great very great always (0% chance) chance chance chance chance chance (100% chance) How great do you think the chance is that you will accidentally eat something to which you are allergic? 2 will have a severe reaction if you accidentally eat something to which you are allergic? 3 will die if you accidentally eat something to which you are allergic? 4 can not effectively deal with an allergic reaction should you accidentally eat something to which you are allergic? 5. How many products must you avoid because of your food allergy? 6. How great is the impact of your food allergy on your social life? almost none very few a few some many very many almost all negligibly small very small small moderate great very great extremely great 10/12

11 Questionnaire on health condition (SF-6D 12 +) The following questionnaire must be filled by the teenager with food allergies. It concerns the influence of his condition on his AND his parent s health condition (as a whole). It is a general questionnaire that covers different aspects of mental and physical health. You must answer every question while choosing the answer that describes most your health, as it is impacted by food allergies, or any other condition. Questions : 1. Physical Functioning Your health does not limit you in vigorous activities Your health limits you a little in vigorous activities Your health limits you a little in moderate activities Your health limits you a lot in moderate activities Your health limits you a little in bathing and dressing Your health limits you a lot in bathing and dressing 2. Pain You have no pain You have pain but it does not interfere with your normal work (both outside the home and housework) You have pain that interferes with your normal work (both outside the home and housework) a little bit You have pain that interferes with your normal work (both outsidethe home and housework) moderately You have pain that interferes with your normal work (both outside the home and housework) quite a bit You have pain that interferes with your normal work (both outside the home and housework) extremely 11/12

12 3. Role limitations You have no problems with your work or other regular daily activities as a result of your physical health or any emotional problems You are limited in the kind of work or other activities as a result of your physical health You accomplish less than you would like as a result of emotional problems 3 You feel tense or downhearted and low some of the time You are limited in the kind of work or other activities as a result of your physical health and accomplish less than you would like as a result of emotional problems 4. Mental health You feel tense or downhearted and low none of the time You feel tense or downhearted and low a little of the time You feel tense or downhearted and low some of the time You feel tense or downhearted and low most of the time You feel tense or downhearted and low all of the time 5. Social functioning Your health limits your social activities none of the time Your health limits your social activities a little of the time Your health limits your social activities some of the time Your health limits your social activities most of the time Your health limits your social activities all of the time 6. Vitality You have a lot of energy all of the time You have a lot of energy most of the time You have a lot of energy some of the time You have a lot of energy a little of the time You have a lot of energy none of the time 12/12