• Survey of Parents with Children with Eating Disorders

  • Thank you for considering participating in this research study.

    Study Background

    Our three basic hypotheses are first, the nutritional status of the child before he/she became sick with anorexia, is an important factor in enabling or inhibiting the development of an eating disorder.  Second, the foods selected during nutritional rehabilitation effect the pace and effectiveness of recovery.  Third, life events, and minor medical issues, and stressors might accent personality traits that then act upon the genetic vulnerability to cause the disorder to appear.

    Aim:  The aim of the study is two-part. First, is to further develop a questionnaire/survey that can be used to examine parent’s observations that might shed light on underlying vulnerability to develop an eating disorder.  Second, is to examine whether certain characteristics differ in children and families where an eating disorder develops, and children and families that develop without an eating disorder, thus called "normal/control".

    Your role in the study.  You are being asked to complete an online survey  because you have a child who is struggling with an eating disorder, and  as his/her parent or caregiver you have a unique perspective, and your observations are valuable.

    The study takes approximately 30-45 minutes

    If we have questions, we might email you later for clarification.  If you would like a copy of our final study, please indicate it on the survey form, and we will be happy to send it to you.

    Risks and Discomforts

    There are three discomforts that might arise from participating in this study.  First, is the time commitment.  Second is the discomfort from focusing on a painful topic, and third is the potential risk to breach of confidentiality. 

    If you have any questions you can contact Barbara Scolnick, MD at bufoodstudy@gmail.com or 617-964-1807

    Confidentiality

    Data including your email which is the only identifying feature will be stored in a password-protected computer only accessible to the investigators, and destroyed at the end of the research.  All research data will be assigned a code.  The list that links the email address to their code will be kept separately in a locked cabinet.  Only the research team  and the Boston University Institutional Review Board will have access to the master-code.  The investigators will take appropriate care to protect the confidentiality of your private information.  However, there is a slight chance that others could learn information about you from this study.

    Benefits

    You will receive no benefit from participating in this study.  This is a totally altruistic decision on your part.  Your alternative is to not participate in this study.

    If this survey is successful in identifying overlooked risk factors for eating disorders, children with eating disorders may benefit from your participation in this study.

    Costs/Payments

    You will not be paid to participate in this research study.

    Voluntary Participation

    Taking part in this research is voluntary.  You have a right to refuse to take part in this study.  If you decide to be in this study you can refuse to answer any question if you wish.  If you decide to be in this study and then change your mind, you can withdraw from the research.  Refusal to participate will not involve any penalty or loss of benefits to which you are otherwise entitled.

    If there are any new findings during the study that may affect whether or not you wish to continue to take part in the research, you will be told about them as soon as possible.  The investigator may decide to stop your participation in the study without your consent.  This might happen if he decides that staying in the study will be bad for you of if he decides to stop the study.

    Contacts

    If you have any questions regarding this research of if you have a research related injury, either now or at any time in the future, please contact David I Mostofsky PhDProfessor, Department of Psychology at 617-358-2799, or email dmostof@bu.edu.

    You may obtain further information about your rights as a research subject by calling the BU CRC IRB Office at 617-358-6115 or irb@bu.edu.

    Agreement to Participate

    You are not required to sign this consent form.  You should be given an opportunity to ask questions about the study and have your questions answered to your satisfaction before you agree to participate.  Please email us with any questions bufoodstudy@gmail.com or phone us at 617-964-1807

    This questionnaire can be filled out in one sitting and can take a while.  If you need or want to take a break, there are stop points along the way. The numerous submit buttons will save your responses to that point.. A reminder will come to your email with a link to complete the survey.

  • By selecting "I agree" you acknowledge that you agree to participate in the study.*
  • 3 Are you the child's
  • 6 Is your child female or male?
  • 7 Was your child adopted?
  • 8 Are the parents
  • 9 Does your child live with
  • 11 How would you characterize your socioeconomic status?
  • 12 What type of community does your family live in?
  • 13 What ethnic group is your child?
  • 19 Today would you consider your child

  • Please click this button if you want to stop here and continue at a later time. Use the link that was emailed.

  • Please click this button to continue the survey on the next page

  • Family History

  • 22 Did or does a close relative to the child--parent,sibling, grandparent,aunt uncle, first cousin have an eating disorder?
  • 23 Did or does a close relative to the child have an autoimmune disease such as rheumatoid arthritis, celiac disease or lupus?
  • 24 Did or does a close relative suffer from alcoholism or other substance abuse?
  • 25 Did or does a close relative suffer from a psychiatric disorder such as anxiety, depression, OCD, bipolar, schizophrenia?
  • 26 Did or does a close relative suffer from a gastrointestinal disease?
  • 27 Did or does a close relative suffer from diabetes ?
  • 28 Do any siblings struggle now or in the past with weight issues?
  • 29 Was any close relative diagnosed with autistic spectrum disorder?
  • 30 Do people in the mothers or fathers family seem to live to a "ripe old age", and remain in good health?

  • Please click this button if you want to stop here and continue at a later time. Use the link that was emailed.

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  • Prior to Onset --some are questions, and some are statements, and note how strongly you agree/disagree

  • 31 The pregnancy and delivery were not complicated.
  • 32 Did the mother eat red meat during the pregnancy?
  • 35 Did your child have neonatal jaundice?
  • 36 Your infant was predominately breast fed.
  • 37 As an infant or toddler, did your child have a milk allergy?
  • 38 As an infant or toddler, did your child have any other food allergies?
  • 39 Did any of your other children have a milk or other food allergies?
  • 40 Generally he/she was a healthy child.
  • 41 Did your child have any hospitalizations or surgeries?
  • 42 Your child had frequent ear infections.
  • 43 Did your child have myringotomies (tubes in the ears)?
  • 44 Your child was frequently on antibiotics.
  • 45 As a toddler and young child, were there sleep problems?
  • 46 Did you child have a tonsillectomy or adenoidectomy?
  • 47 Generally as a child he/she was a picky eater.
  • 48 Generally, as a child, he/she was an adventurous eater.
  • 49 Generally, as a child, he/she had a limited repertoire of foods he/she would eat.
  • 50 Generally, as a child, he/she was willing to try new foods.
  • 51 As a child, he/she often had concerns about textures of food--too mushy, etc.
  • 52 As a child, he/she liked very spicy and strong flavors.
  • 53 As a child, he/she seemed to have a "mature palate", eating a wide range of foods.
  • 54 As a child, he/she seemed to like unusual foods or food combinations.
  • 55 As a child he/she frequently had 2nd and 3rd helpings.
  • 56 As a child you worried that he/she was not eating enough
  • 57 As a child, you worried about portion control and that he/she might be eating too much.

  • Please click this button if you want to stop here and continue at a later time. Use the link that was emailed.

  • Please click this button to continue the survey on the next page

  • 58 As a child, he/she had a sweet tooth.
  • 59 As a child, he/she liked "junk food" such as candy, sodas, chips.
  • 60 As a child, he/she had favorite foods.
  • 61 As a child, he/she loved chocolate.
  • 62 As a child, he/she was at times a vegetarian.
  • 63 During his/her childhood, the family was at times vegetarian.
  • 64 As a child he/she drank soda at least 2x/week.
  • 65 As a child, he/she used artificial sweeteners like Splenda, Equal.
  • 66 As a child he/she drank milk daily.
  • If so, the milk was
  • 67 As a child he/she took a multivitamin most days.
  • 68 As a child he/she was considered to be in the normal range for weight.
  • 69 As a child, he/she was considered overweight by friends, coaches or parents.
  • 70 As a child, he/she was considered underweight by friends, coaches, or parents.
  • 71 Before onset, the family ate together at least 5 meals/week.
  • 72 Before onset, the family ate at a table most nights.
  • 73 Before onset, the TV was usually on during dinner.
  • 74 Before onset, someone in the family frequently struggled with his/her weight.
  • 75 Someone in the family was frequently dieting.
  • 76 There were usually low fat foods, diet foods or drinks or artificial sweeteners in the house.
  • 77 Did someone in the family require special foods due to a medical conditon?
  • 78 Did the family keep special religious food laws?
  • 79 Most meals were home cooked.
  • 80 Generally, chicken was eaten at least once/week.
  • 81 Generally, fish was eaten at least once/week.
  • 82 Generally, red meat was eaten at least once/week.
  • 83 Generally pasta was eaten at least once/week.
  • 84 Someone in the family really enjoyed cooking.
  • 85 The family made an effort to eat what was in season.
  • 86 The family ate at a fast food restaurant like Mc Donalds or Burger King at least once/month.
  • 87 The family ordered take out dinners at least once/week.

  • Please click this button if you want to stop here and continue at a later time. Use the link that was emailed.

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  • Childhood Traits Prior To Onset

  • 88 As a child he/she was active and played outside most days.
  • 89 As a child, was he/she on a sports team?
  • 90 During childhood, he/she was frequently cold and needed more clothing even when others were comfortable.
  • 91 During childhood, he/she was frequently warm and needed less clothing even when others were comfortable.
  • 92 During childhood, he/she seemed to have a high pain threshold.
  • 93 During childhood, your child was considered to be an anxious child.
  • 94 During childhood, your child had OCD (obsessive compulsive disorder) tendencies.
  • 95 During childhood, he/she seemed inflexible and/or had difficulty with transitions.
  • 96 During childhood, he/she showed an excessive need for order and symmetry.
  • 97 During childhood, he/she seemed overly worried.
  • 98 During childhood, he/she was seen as a perfectionist.
  • 99 During childhood, did your child see a psychiatrist or therapist?
  • 100 Did your child take psychiatric medications?
  • 101 During childhood, your child seemed to have at least one or 2 close friends.
  • 102 Your child had sensory issues, such as his/her clothes had to be very tight or very baggy or he/she did not like the feeling of tags in clothes.
  • 103 Your child had sensory issues about food, such as not liking "mushy foods", textures, etc.
  • 104 Your child had an unusually acute sense of smell.
  • 105 Your child had unusual sensitivities to loud sounds.
  • 106 During childhood, your child seemed to be overly concerned about how his/her body looked.
  • 107 During later childhood, your child was interested in fashion and fashion magazines.
  • 108 During later childhood your child was interested in "building muscles" or working out.
  • 109 Your child was considered by many to be athletically gifted.
  • 110 Your child was considered by many to be gifted in other areas, such as musically, artistically, academically.

  • Please click this button if you want to stop here and continue at a later time. Use the link that was emailed.

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  • ONSET OF ED

  • 111 What was the first thing you noticed that concerned you about your child's health? (select all that apply)
  • 113 Who made the diagnosis?
  • 114 In your opinion, you can identify one or more precipitating events to the onset of your child's eating disorder.
  • 115 Up to 6 months prior to onset, did your child have surgery including minor surgery?
  • 116 Up to 6 months prior to onset,did your child experience a sports injury?
  • 117 Up to 6 months prior to onset, did your child experience a medical illness?
  • 118 Up to 6 months prior to onset, did your child take a trip?
  • 119 Up to 6 months prior to onset, did your child change schools, or did the family move?
  • 120 Up to 6 months prior to onset, did your child have a growth spurt or if a female, start to develop curves?
  • 121 Up to 6 months prior to onset , did someone advise him/her to lose weight?
  • 122 Up to 6 months prior to onset, did your child experience an emotional trauma?
  • 123 Up to 6 months prior to onset, did your child "give up" a specific food? e.g. chocolate for Lent?
  • 124 Did your child participate in a healthy eating curriculum?
  • 125 Was your child weighed in school as part of a school program?
  • 126 Did your child became interested in healthy eating and exercise?
  • 127 If so, were you initially delighted that your child was adopting healthy habits?
  • 128 At the onset did your child become overly concerned about how his/her body appeared?
  • 129 At the onset did your child adopt vegetarianism?
  • 130 At the onset, did your child stop eating red meat?

  • Please click this button if you want to stop here and continue at a later time. When you want to continue, click onto the link that will be sent to your email

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  • Full Blown ED and Treatment

  • 138 During the course of ED, your child had fear foods.
  • 139 During the course of ED, your child had fears/worries/anxieties other than concerning food.
  • 140 During the course of ED, your child exercised compulsively.
  • 141 During the course of ED your child moved from anorexia restricting to binge/purge.
  • 142 During the course of ED, your child became acutely suicidal.
  • 143 During the course of ED your child engaged in "cutting" or other self-injurious behaviors.
  • 144 During the course of ED, your child developed alcohol or other drug abuse or overuse.
  • 145 During the course of ED, your child avoided all sweets.
  • 146 During the course of ED, your child used Splenda, Equal and/or other artificial sweeteners.
  • 147 During, the course of ED, your child started drinking coffee and/or increased their amount of intake.
  • 148 During the course of ED,your child ate sushi frequently.
  • 149 During the course of ED, your child ate in ritualistic manner.
  • 150 Was your child ever hospitalized for the eating disorder?
  • 151 Was your child ever in residential treatment?
  • 152 Was your child ever in intensive out-patient treatment?
  • 153 Is the family using the Maudsley Method?
  • 154 Was your child ever on a meal plan?
  • 155 Who helped you with nutritional advice?
  • 156 During recovery your child was involved in determining the meal plan.
  • 157 During recovery were smoothies used?
  • 158 During recovery,was Ensure, Boost, and/or Carnation Instant Breakfast used?
  • 159 During recovery, were vitamins or supplements prescribed?
  • 160 During recovery,were psychiatric medications prescribed?
  • 161 During recovery fish was added to the diet.
  • 162 During recovery, red meat was added to the diet.
  • 163 During recovery, the type of milk was changed.
  • 164 During recovery, the addition of a particular food or class of food seemed to help recovery.
  • 166 How did you find out about this survey?
  • 166 Would you like a copy of our final report sent to your email address?

  • Be sure to click this final SUBMIT button before exiting the survey

  • Should be Empty: