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  • 1. Pediatric Dental Survey of Children with Special Health Care Needs Form 2b Dental Survey Form Version: 03/15/07Dear parent or caregiver,At Children’s Hospital Boston’s Department of Dentistry, we are conducting a research study to learn more about thedental needs and access and/or barriers to dental care for children with special health care needs (CSHCN) inMassachusetts. This study will help us better identify oral and dental health needs for CSCHN in Massachusetts, andhelp us to look for areas of improvement for dental services for CSHCN.We are asking the parents and/or other caregivers of CSCHN to participate answer this 32 item questionnaire and weexpect to interview about 1,500 individuals. It takes approximately 10 minutes to complete the survey.Your participation, by completing this survey, is entirely voluntary and it will not affect your child’s medicalcare. There are minimal risks involved, and if you do choose to fill out the survey, you can stop doing so at anytime. You and your child will not be identified in the survey. Additionally, the surveys will be stored in aresearch record accessible only to the investigators. The results of this study may be published.Research at Children’s Hospital: Children’s Hospital has recently developed a web-based, interactiveeducational program for parents called “A Parent’s Guide to Medical Research.” To find out more aboutresearch at Children’s Hospital, please visit the program at www.researchchildren.orgChildrens Hospital is interested in hearing your comments, answering your questions and responding to anyconcerns regarding clinical research at Childrens Hospital. If you would like further information about thetype of clinical research performed at the hospital or have suggestions, questions or concerns regardingclinical research you may send an email to cci@childrens.harvard.edu or call 617 355-7052 between the hoursof 8:30 and 5:00.You may use the following contact information to reach the appropriate person/office to address any questions orconcerns you may have about this study.  I can call …  At …  If I have questions or concerns about …Investigator/Study Contact: Phone: 617-355-2567  General questions about the studyLinda Nelson, DMD, MScD  Research-related injuries or emergencies  Any research-related concerns or complaints Office of Clinical Investigations Phone: 617-355-7052  Rights of a research subject  Use of protected health information  Compensation in event of research-related injury  Any research-related concerns or complaints  If investigator/study contact cannot be reached  If I want to speak with someone other than the Investigator, Study Contact or research staff **Si prefiere un cuestionario en español, o prefiere completarlo por teléfono en español, por favor llame a Anne Getzin, (617) 355-8975**Form 2b: Dental Survey Form Version: 03/15/07 Page 1 of 10
  • 2. Pediatric Dental Survey of Children with Special Health Care Needs MC IF YOUR CHILD IS LESS THAN 12 MONTHS OR MORE THAN 18 YEARS OF AGE, PLEASE STOP HERE!SECTION B: Eligibility and Screening QuestionsB1. Do you have a child with a medical condition or disability that has lasted or is expected to last at leastone year? [ ]1 Yes IF YES – PLEASE CONTINUE WITH THE SURVEY. [ ]0 No IF NO – PLEASE STOP HERE. THANK YOU FOR YOUR TIME!IF YOU HAVE MORE THAN ONE CHILD WITH A MEDICAL CONDITION OR DISABILITY PLEASEANSWER THIS SURVEY ABOUT YOUR OLDEST CHILD WITH A MEDICAL CONDITION OR DISABILITYWHO IS UNDER THE AGE OF 18.B2. Does your child use or need prescription medication? (this does not include over the counter medication for colds, headaches, vitamins, minerals, or supplements without a prescription) [ ]0 No [ ]1 Yes [ ]-8 Don’t knowB3. Does your child use or need more medical care, mental health services, or education services than other children of the same age? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowB4. Does your child use or need treatment or counseling for an emotional, developmental, or behavioral problem? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowB5. Is there a limitation in your child’s ability to do things most children of the same age do? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowB6. Does your child use or need special therapy, such as physical, occupational, or speech therapy? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowForm 2b: Dental Survey Form Version: 03/15/07 Page 2 of 10
  • 3. Pediatric Dental Survey of Children with Special Health Care Needs MCSECTION C: Medical ConditionsC1. Can your child sit by himself or herself? [ ] 0 No [ ]1 YesC2. Can your child walk independently without any help even for short distances? [ ] 0 No [ ]1 YesC3. Does your child use a wheelchair? [ ] 0 No [ ]1 YesC4. Does your child have use of his or her hands for activities of daily living, such as holding a pen ortoothbrush, and can control the movement? [ ] 0 No [ ]1 YesC5. Is there a primary diagnosis or syndrome for your child’s medical condition? [ ] 0 No [ ]1 Yes (Go to question C5a) C5a. If Yes, specify: (Check one) [ ]1 Autism/Pervasive Developmental Delay (PDD) [ ]2 Asperger’s Disorder [ ]3 Cerebral Palsy [ ]4 Chromosomal anomalies [ ]5 Cleft Lip/Palate [ ]6 Coarctation of aorta [ ]7 Cystic Fibrosis [ ]8 Developmental Delay [ ]9 Diabetes Mellitus, Type 1 [ ]10 Down syndrome [ ]11 Hemophilia/Factor VIII/Factor IX deficiency – Mild [ ]12 Hemophilia/Factor VIII/Factor IX deficiency – Severe [ ]13 Seizure Disorder [ ]14 Sickle Cell Anemia/Disease [ ]15 Spina Bifida [ ]16 Von Willebrand’s disease [ ]99 Other, specify: ____________________________________________________ PLEASE CONTINUE ON THE NEXT PAGEForm 2b: Dental Survey Form Version: 03/15/07 Page 3 of 10
  • 4. Pediatric Dental Survey of Children with Special Health Care Needs MCC6. Which of the following are conditions that your child has. (Please check all that apply and write down anycomment about that condition that you would like to share with us.) Medical Condition Yes No Maybe i. If Yes, describe or specify a. Brain injury [ ]1 [ ]0 [ ]-5 b. Cerebral palsy [ ]1 [ ]0 [ ]-5 c. Heart problem [ ]1 [ ]0 [ ]-5 d. Cleft lip/Palate [ ]1 [ ]0 [ ]-5 e. Developmental delay [ ]1 [ ]0 [ ]-5 f. Feeding/eating problems (Please specify) [ ]1 [ ]0 [ ]-5 g. Feeding tube (such as G tube) [ ]1 [ ]0 [ ]-5 h. Gastric reflux [ ]1 [ ]0 [ ]-5 i. Swallowing problems [ ]1 [ ]0 [ ]-5 j. Thyroid problems (Please specify) [ ]1 [ ]0 [ ]-5 k. Trouble gaining weight [ ]1 [ ]0 [ ]-5 l. Gaining too much weight [ ]1 [ ]0 [ ]-5 m. Hearing loss [ ]1 [ ]0 [ ]-5 n. Child is non-verbal (if yes, skip o) [ ]1 [ ]0 [ ]-5 o. Speech problems (Please specify) [ ]1 [ ]0 [ ]-5 p. Neuromuscular defect or Hypotonia [ ]1 [ ]0 [ ]-5 q. Orthopedic problems (Please specify) [ ]1 [ ]0 [ ]-5 r. Seizure disorder [ ]1 [ ]0 [ ]-5 s. Attention Deficit Hyperactivity Disorder [ ]1 [ ]0 [ ]-5 t. Anxiousness/nervousness depression [ ]1 [ ]0 [ ]-5 t. Anxiousness/nervousness depression [ ]1 [ ]0 [ ]-5 u. Emotional disorder [ ]1 [ ]0 [ ]-5 v. Autism spectrum disorder [ ]1 [ ]0 [ ]-5 w. Behavioral issues [ ]1 [ ]0 [ ]-5 x. Learning disorder [ ]1 [ ]0 [ ]-5 y. Other [ ]1 [ ]0 [ ]-5Form 2b: Dental Survey Form Version: 03/15/07 Page 4 of 10
  • 5. Pediatric Dental Survey of Children with Special Health Care Needs MCSECTION D: Dental Health and Dental Care QuestionsD1. How would you describe the condition of your child’s teeth now? Would you say it is: (Check one) [ ]1 Excellent [ ] 2 Very good [ ] 3 Good [ ] 4 Fair, or [ ] 5 Poor [ ] 6 Has no natural teeth [ ]-8 Don’t knowD2. Has your child ever seen a dentist for dental care of any kind? [ ]1 Yes (Continue with next question) [ ] 0 No (Skip to question D16) [ ]-8 Don’t know (Skip to question D16)D3. What kind of dental care has your child ever received from a dentist? [ ] 1 Check-up/cleaning only (Continue with next question) [ ] 2 Emergency/repair only (Skip to question D15) [ ] 3 Both check-up/cleaning and emergency/repair (Continue with next question) [ ]-8 Don’t know (Skip to question D16)D4. How old was your child when he or she first saw a dentist for dental care? Age: ___ ___ yearsD5. How often does your child see a dentist? [ ]1 More than once a year [ ]2 About once a year [ ]3 Once every two or three years [ ] 4 There are usually more than three years between dental visits [ ]-8 Don’t knowD6. When was the last time your child went to the dentist for any reason? [ ] 1 6 months ago or less [ ]2 More than 6 months ago, but less than 1 year ago [ ]3 More than 1 year ago, but less than 2 years ago [ ]4 More than 2 years ago, but less than 3 years ago [ ] 5 More than 3 years ago [ ]-8 Don’t knowD7. Who does your child usually see for cleanings and check-ups? [ ] 1 General dentist (Provides care for adults and children) [ ]2 Pediatric dentist (Provides care for children only) [ ]-8 Don’t knowD8. Who usually provides your child’s dental care for cleanings and check-ups? Is it: [ ]1 Dentist only [ ]2 Hygienist only [ ]3 Both the hygienist and the dentist [ ]-8 Don’t knowForm 2b: Dental Survey Form Version: 03/15/07 Page 5 of 10
  • 6. Pediatric Dental Survey of Children with Special Health Care Needs MCD9. Which of the following best describes how your child usually behaves during a dental visit for a check-up and cleaning? (Please check only the one that is most common or typical) [ ]1 Cooperative [ ]2 Apprehensive [ ]3 Needs hands held [ ]4 Needs full body restraint [ ]5 Requires sedation [ ]6 Requires general anesthesia [ ]-8 Don’t knowD10. Does your child usually require any special accommodations to make the dental visit possible, such as being examined somewhere other than the dental chair? [ ]1 Yes – Please, specify the required accommodations: _____________________________ [ ] 0 No [ ]-8 Don’t knowD11. Where does your child usually receive his or her dental care? (Check all that apply) [ ] Private dental office [ ] Child’s school [ ] Community Health Center [ ] Dental School [ ] Hospital Dental Service [ ] Don’t know (Go to question D12) D11a. What is the name of the clinic/center? ____________________________________________D12. Will your child continue to see his or her regular dental care provider after he or she becomes an adult? [ ]0 No [ ]1 Yes (Go to question D15) [ ]-8 Don’t knowD13. Has anyone ever discussed with you the need to change providers after your child becomes an adult? [ ]0 No [ ]1 Yes [ ]-8 Don’t knowD14. Have you made a plan to change providers to someone who provides services for adults? [ ]0 No [ ]1 Yes [ ]-8 Don’t knowD15. Has your child ever seen any of these dental specialists? (Check all that apply) [ ] Periodontist (For gum treatment) [ ] Prosthodontist (For crowns and bridges, implants or capped teeth) [ ] Endodontist (For root canals) [ ] Oral surgeon (For removing teeth or for jaw surgery) [ ] Orthodontist (For straightening teeth with braces or retainers) [ ] None [ ] Don’t knowForm 2b: Dental Survey Form Version: 03/15/07 Page 6 of 10
  • 7. Pediatric Dental Survey of Children with Special Health Care Needs MCD16. Has your child ever had any of the following dental problems? (Check all that apply) [ ] Pain in his or her teeth or mouth [ ] Cavities [ ] Broken teeth [ ] Crooked teeth, such as teeth that need braces [ ] Build up of tartar that could only be removed by a dentist or hygienist [ ] Gum problems, such as bleeding or receding gums [ ] Discoloration, such as stained teeth, yellow teeth or blackened teeth [ ] Enamel problems, such as soft teeth or no enamel [ ] Grinding of teeth [ ] Nerve problems, such as sensitivity to hot/cold foods or needing a root canal [ ] Teeth are not growing in when expected [ ] Frequent mouth sores, such as canker sores [ ] Other, specify: ________________________________________________D17. Do you ever check your child’s teeth or gums? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowD18. Does your child currently have any unmet dental need, for example, unfilled cavities, infected teeth, untreated gum problems, crowded or crooked teeth that have not been repaired? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowForm 2b: Dental Survey Form Version: 03/15/07 Page 7 of 10
  • 8. Pediatric Dental Survey of Children with Special Health Care Needs MCD19. The following is a list of statements that sometimes are true about children and dental care. Pleaseindicate which statements are false or true for your child.(Please read the list of reasons. For all False responses, go to the next statement. For all True responses,answer how often – Often, Sometimes or Never – and check the appropriate box.) ii. If column (i) is True, how i. Response often does this prevent you from taking your child to the Reason dentist? Would you say: Some False True Often Never timesa. My child is afraid of the dentist. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 My child does not like to have anything done to theirb. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 mouth.c. My child cannot behave cooperatively at the dentist. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 Dental staff are anxious or nervous about treating myd. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 child. My child’s medical conditions make dental treatment verye. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 complicated.f. My child is too young to see a dentist. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 It is hard for me to take time off from work to take my childg. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 to the dentist. It is hard to find a dentist willing to treat my child becauseh. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 of his or her medical condition.i. Dental care is too expensive for me. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3j. I am afraid of going to the dentist myself [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 It is hard for me to find a dentist for my child near where Ik. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 live.l. It is hard for me to travel to the dental office [ ]1 [ ]2 [ ]1 [ ]2 [ ]3m. My child only has baby teeth that will just fall out. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3n. I can’t get convenient appointment times. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 My child has other health care needs that are more urgento. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 than dental care. I can’t find a dentist who will accept my child’s dentalp. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 insurance (includes Medicaid/ Mass Health) It is hard to find a dentist’s office that is handicappedq. [ ]1 [ ]2 [ ]1 [ ]2 [ ]3 accessibler. Other: __________________________________ [ ]1 [ ]2 [ ]1 [ ]2 [ ]3SECTION E: Quality of Life QuestionsForm 2b: Dental Survey Form Version: 03/15/07 Page 8 of 10
  • 9. Pediatric Dental Survey of Children with Special Health Care Needs MC E1. How often did each of the following events occur for your child in the past three months: Would you say: In the past three months… I don’t All of the Some of Once in Not at know time the time a while all How often was your child in pain because of hisa. [ ]-8 [ ]1 [ ]2 [ ]3 [ ]4 or her teeth or mouth? Would you say it was: How often did your child have difficulty eatingb. certain foods because of his or her teeth or [ ]-8 [ ]1 [ ]2 [ ]3 [ ]4 mouth? (for example: hot, cold, or hard foods) How often did your child feel angry or upsetc. [ ]-8 [ ]1 [ ]2 [ ]3 [ ]4 because of his or her teeth or mouth? How often did your child miss school because ofd. [ ]-8 [ ]1 [ ]2 [ ]3 [ ]4 his or her teeth or mouth? How often did your child feel worried because ofe. [ ]-8 [ ]1 [ ]2 [ ]3 [ ]4 his or her teeth or mouth? How often did your child not want to smile orf. laugh around other people because of his or her [ ]-8 [ ]1 [ ]2 [ ]3 [ ]4 teeth or mouth? SECTION F: Background and Demographics F1. Which county do you live in? [ ]1 Barnstable [ ]2 Berkshire [ ]3 Bristol [ ]4 Dukes [ ]5 Essex [ ]6 Franklin [ ]7 Hampden [ ]8 Hampshire [ ]9 Middlesex [ ]10 Nantucket [ ]11 Norfolk [ ]12 Plymouth [ ]13 Suffolk [ ]14 Worcester [ ]99 Other, specify: ________________________________ F2. Is your child a girl or a boy? [ ]1 Girl [ ]2 Boy F3. In what year was this child born? Year: __ __ __ __ F4. Which of the following best describes the ethnicity of your child? (Check all that apply) Form 2b: Dental Survey Form Version: 03/15/07 Page 9 of 10
  • 10. Pediatric Dental Survey of Children with Special Health Care Needs MC [ ] African American or Black [Black refers to people with ancestors from Sub-Saharan Africa, the West Indies, the Caribbean (including Haiti, Jamaica, Barbados, and Cape Verde)] [ ] Hispanic, Latino, Spanish [ ] Asian [ ] East Indian [ ] Hawaiian/Pacific Islander [ ] Caucasian [ ] Native American Indian [ ] Other, specify: __________________________________________ [ ] Don’t know F5. What is your relationship to the child? (Check one) [ ] 1 Mother [ ] 2 Father [ ] 3 Legal Guardian [ ] 4 Grandparent [ ] 5 Sister/Brother [ ] 6 Aunt/Uncle [ ] 7 Foster Parent [ ]99 Other, specify: _______________________________ F6. What is your marital status? (Check one) [ ] 1 Married [ ] 2 Separated [ ] 3 Divorced [ ] 4 Single parent [ ] 5 Widowed [ ]99 Other, specify: _______________________________ [ ]-8 Don’t know F7. What is the HIGHEST level of education that your child’s Parents/Guardians achieved? (Check one for each parent/guardian) High College Grade Some Parent/Guardian School School College degree or Don’t know Refused Diploma highera. Mother or 1st guardian [ ]1 [ ]2 [ ]3 [ ]4 [ ]-8 [ ]-7b. Father or 2nd guardian [ ]1 [ ]2 [ ]3 [ ]4 [ ]-8 [ ]-7 F8. What languages are usually spoken in your child’s home? (Check all that apply) [ ] English [ ] Spanish [ ] Albanian/Russian [ ] Arabic [ ] Chinese (Mandarin/Cantonese) [ ] Haitian [ ] Portuguese/Cape Verdean [ ] Vietnamese [ ] American Sign Language (ASL) [ ] Other, specify: _________________________________ F9. Was your child born in the United States? Form 2b: Dental Survey Form Version: 03/15/07 Page 10 of 10
  • 11. Pediatric Dental Survey of Children with Special Health Care Needs MC [ ]0 No [ ]1 Yes [ ]-8 Don’t knowF10. Were one or both child’s parents born in the United States? [ ]1 No [ ]2 Yes – both were [ ] 3 Yes – one was [ ]-8 Don’t knowF11. Does your child have Medicaid or Mass Health? (a public assistance program that pays for medicaland dental care) [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowF12. Does your child have health insurance through a private health insurance program? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowF13. Does your child have dental insurance through a private insurance program? [ ] 0 No [ ] 1 Yes [ ]-8 Don’t knowF14. Which of the following categories best represents the combined income for all family members in yourhousehold for the past 12 months (Check one) [ ]1 Less than $20,000 [ ]2 $20,000-$40,000 [ ]3 $40,000-$60,000 [ ]4 $60,000-$80,000 [ ]5 $80,000-$100,000 [ ]6 More than $100,000 [ ]-8 Don’t knowF15. Is there anything else you would like to comment on that is of importance to you and/or your child?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Thank you so much for answering the questions in this survey!Form 2b: Dental Survey Form Version: 03/15/07 Page 11 of 10
  • 12. Pediatric Dental Survey of Children with Special Health Care Needs MC Children’s Hospital Boston□ Yes, I completed a survey. Please enter me inthe drawing for one of ten $50 Target gift cards!Name:_______________________________Phone Number: _______________________Form 2b: Dental Survey Form Version: 03/15/07 Page 12 of 10