Persons using assistive technology may not be able to fully access information in this file. For assistance, e-mail niddk-cr@imsweb.com. Include the Web site and filename in your message. QP NIDDK Liver Transplantation Database QUALITY OF LIFE FORM: PEDIATRIC 6/30/99 Version 2.0 FOR DATA CENTER USE ONLY COMPLETION LOG LTD_ID __________________________ ID Follow-up Year: _______ ETMPT (ETMPT) DATE Form Received _____/_____/_____ DCCM DCCM DDDY Data Entry _____/_____/_____ Sysid _____ SYSID Verification _____/_____/_____ Cleaned _____/_____/_____ Transfer _____/_____/_____ MM DD YY ******************************************************************************* INTRODUCTION This questionnaire is designed to collect information about your child?s general health and development following liver transplantation. This form should not be given to the child to complete, but rather should be completed by a parent or guardian. The information given will not be revealed to the doctors or nurses who are taking care of your child but will be kept confidential. The information will not affect your child?s medical care in any way. This questionnaire will be given to you each year during the follow up study, or until your child reaches age 16. Filling out this form is voluntary. If you do not want to answer certain questions, just cross them out on the form. LTD ID ____________________________ ID FOLLOW UP YEAR ______________ ETMPT (ETMPT) I. BACKGROUND INFORMATION BOM BOD BOY 1. Date of birth: _______/_______/_______ (month) (day) (year) 2. Sex (check one) SEX (SEX) ___ 1. Male ___ 2. Female 3. Patient?s height and weight? 3.1 Height: HGTFT _____ feet HGTIN _____ inches 3.2 Weight: WGTLB_____ in pounds 4. With whom does patient live? (check one) PLIVE (PLIVE) ___ 1. Mother/Father ___ 2. Mother only ___ 3. Father only ___ 4. Other family member(s) 5. Does patient have siblings? SIBS (YNQOL) Yes ___ No ___ II. HOW WELL HAS YOUR CHILD BEEN? Here are some statements that mothers have made to describe the children. Please answer them thinking about this child during the last 2 weeks. Please answer only "B" iems for which you chose an asterisked answer in Part "A". A. During the last 2 weeks, how often did the child (circle one) B. Was this due to (HWELL) illness? (circle one) Never or Some of Almost Rarely the Time Always (1) (2) (3) If * (YNS) 1. Eat well *1 *2 3 EAT Yes Sometimes No EWI 2. Sleep well 1 *2 3 SLEEP Yes Sometimes No SWI 3. Seem contented and cheerful *1 *2 3 CONT Yes Sometimes No CACI 4. Act moody 1 *2 *3 MOODY Yes Sometimes No AMI 5. Communicate what he/she wanted *1 *2 3 COMM Yes Sometimes No CWWI 6. Seem to feel sick and tired 1 *2 *3 SICK Yes Sometimes No SATI 7. Occupy him/herself *1 *2 3 OCCUP Yes Sometimes No OHHI 8. Seem lively and energetic *1 *2 3 LIVE Yes Sometimes No LAEI 9. Seem unusually irritable 1 *2 *3 IRRIT Yes Sometimes No UII 10. Sleep through the night *1 *2 3 NIGHT Yes Sometimes No STNI 11. Respond to your attention *1 *2 3 ATTEN Yes Sometimes No RTAI 12. Seem unusually difficult 1 *2 *3 DIFF Yes Sometimes No UDI 13. Seem interested in what was going on around him/her *1 *2 3 INTER Yes Sometimes No IISI 14. React to things by crying 1 *2 *3 CRY Yes Sometimes No RBCI III. SOCIAL ASSESSMENT Choose the appropriate developmental age range for your child and begin answering the questions within that section by placing a check in the appropriate box. Continue to answer questions in the next developmental age category if you feel your child fits into that range of ability. (DEV) DEVELOPMENTAL AGE Never or Does, but not Does fairly Does very well Rarely well about 25% well about 75% always or (even if of the time of the time almost Asked) (may need to may need to always (with- Be asked) be asked) out being asked) UP TO AGE 4 1. Reaches for a person whom he or REACH she wants. 2. Treats at least two people outside FRIEN the family as friends, different from strangers. 3. Imitates actions when asked, such ACTS as waving or clapping hands. 4. Hands toys or other objects to HANDS another person. AGE 4 TO 9 5. Rolls a ball or plays simple games GAMES with another person. 6. Takes part in simple group games and social activities (e.g. tag, hide- GROUP and-seek, follow-the-leader). 7. Says "please" and "thank you" PLEAS When appropriate. 8. Waits at least two minutes for turn in a group activity (e.g. taking WAITS turns at batting a ball or getting a drink of water). AGE 10 TO 16 9. Offers help to other people (e.g. holds a door open for one whose arms are HELP full or picks up an object dropped by someone else). 10. Acts appropriately without drawing negative attention while in public APPR places with friends (e.g. a movie theater or library). 11. Says "hello" or shakes hands when HELLO being introduced. 12. Locates or remembers telephone numbers and calls friends on the PHONE telephone. IV. GROSS MOTOR ASSESSMENT Choose the appropriate developmental age range for your child and begin answering the questions within that section by placing a check in the appropriate box. Continue to answer questions in the next developmental age category if you feel your child fits into that range of ability. (DEV) DEVELOPMENTAL AGE Never or Does, but not Does fairly Does very well Rarely well about 25% well about 75% always or almost (even if of the time of the time always (without be asked) be asked) being asked) BELOW AGE 4 1. Sits alone for thirty seconds with head and back held straight and SITSA steady (without support). 2. Stands for at least five seconds by holding onto furniture or STAND other objects. 3. Pulls self into a standing position. PULLS 4. Stands alone and walks for at least WALKS 6 weeks. AGE 4 TO 5 5. Kicks a ball or object that is not KICKS moving without falling. 6. Walks up and down stairs by alter- nating feet from step to step (may STAIR hold handrail). AGE 6 TO 7 7. Climbs a six-foot ladder (e.g. to CLIMB a slide). 8. Uses pedals to ride a tricycle or RIDES other three-wheeled toy. 9. Picks up and carries a full bag of groceries at least 20 feet and sets CARRY it down. AGE 8 TO 16 10. Walks on a narrow surface (a curb, railroad track or line) NSURF for at least 10 feet without stepping off. 11. Catches a bounced tennis-size ball with two hands. (Ball is not CBALL caught against the body.) 12. Rides a bicycle (without training BIKE wheels) for at least 20 feet. 13. Jumps rope at least ten times JUMPR without missing. 14. Takes part in physical exercise on a regular basis (e.g. routine EXERC exercises or calisthenics, tennis, jogging, swimming, volleyball, biking). 15. Catches tennis-size ball with only TENNB one hand. 16. Does at least six push-ups. PUSHU 17. Takes part in strenuous physical activities on a regular basis that require strength or endurance ACTIV (e.g. weight-lifting, running at least 3 miles, or swimming at least 1/2 mile). V. YOUR CHILD'S HEALTH 1. In general, would you say this child's health is excellent, good, fair or poor? (check one) ___ 1. Excellent HLTH (HLTH) ___ 2. Good ___ 3. Fair ___ 4. Poor 2. During the last 3 months, how much have you worried about the child's health? (check one) ___ 1. A great deal WAH (WORRY) ___ 2. Somewhat ___ 3. A little ___ 4. Not at all 3. During the last 3 months, how much pain or distress has this child's health caused him or her? (check one) ___ 1. A great deal HCP (WORRY) ___ 2. Somewhat ___ 3. A little ___ 4. Not at all 4. Please read each of the following statements, and then circle one of the numbers on each line to indicate whether the statement is true or false for this child. There are no right or wrong answers. Some of the statements may look or seem like others. But each statement is different, and should be rated by itself. (TRUE) Circle one: Definitely Mostly Don't Mostly Definitely True True Know False False 5 4 3 2 1 (TRUE) CHE 4.1 This child's health is excellent. 5 4 3 2 1 CRI 4.2 This child seems to resist 5 4 3 2 1 illness very well. CLH 4.3 This child seems to be less healthy than other children I know 5 4 3 2 1 1 CCE 4.4 When there is something going around, this child usually catches it. 5 4 3 2 1 VI. SELF-REPORT KARNOFSKY SCALE At this time, how would you rate your child's health (check one): KARN (KARNO) ___ 1. Normal; no complaints, no evidence of disease. ___ 2. Able to carry on normal activity; minor signs and symptoms of disease. ___ 3. Able to carry on normal activity (appropriate for age) with effort; some signs and symptoms of disease. ___ 4. Able to care for himself/herself (appropriate for age) but unable to carry on normal activity or do active work. ___ 5. Requiring occasional assistance but able to care for most of his/her own needs (appropriate for age). ___ 6. Requiring considerable assistance and frequent medical care. ___ 7. Disabled; requiring special care and assistance. ___ 8. Worse off than any of these statements suggest. VII. ACADEMIC ASSESSMENT 1. Current Education Level (check one) EDUC (EDUC) __ 1. Pre-School/Nursery School __ 2. Kindergarten __ 3. Grade (circle one) GRADE (GRADE) 1 2 3 4 5 6 7 8 9 10 11 12 2. Is your child attending school? __ 2.1 Yes SCHOL (YNQOL) IF YES, check one ___ 2.1.1 Full-time FPT (FPT) ___ 2.1.2 Part-time __ 2.2 NO NOSCH IF NO, check one Reason: ___ 2.2.1 Age (NOSCH) ___ 2.2.2 Health ___ 2.2.3 Other (explain) ________________________________ NOSCO 3. Is your child being tutored at home? TUTOR (YNQOL) __ 3.1 Yes IF YES, Hours per week ____ HOURS __ 3.2 No 4. Does your child attend special education classes or receive tutoring in school? Yes __ No __ SEDTU (YNQOL) IF YES ___ 4.1 Type of Special Education Program SPECE (YNQOL) IF YES, check all that apply __ 4.1.1 Learning disabilities SPEDL (YNQOL) __ 4.1.2 Emotional disability SPEDE (YNQOL) __ 4.1.3 Mental retardation SPEDM (YNQOL) __ 4.1.4 Physical disability SPEDP (YNQOL) __ 4.1.5 Other SPEDO (YNQOL) ___________________________________ SPECT Specify ___ 4.2 Tutoring: SCHTU (YNQOL) IF YES 4.2.1 Hours per week ______ STUTH 4.2.2 Subjects ______________________ STUTS 5. Number of school days missed during the last year: ______ SDM 6. 6.1 Grade child was in before transplant ______ GIBT 6.2 Grade child is currently in ______ GCCI 7. Grade failure: Yes ___ No ___ FAIL (YNQOL) IF YES, Was it due to illness? Yes ___ No ___ CAUSE (YNQOL) VIII. THIS FORM WAS FILLED OUT BY: 1. Relationship to patient (check one): FFOR (FFOREL) 1.1 ___ Parent 1.2 ___ Guardian 1.3 ___ Other ________________________________ FFORS specify relationship 2. Today's date: _______/_______/_______ EVALM EVALD EVALY (month) (day) (year) Thank you for spending the time to fill out this form. COMMENTS: COM (YN) COM1 COM2 COM3 COM4 COM5 COM6 COM7 COM8 COM9 COM10 DCID DCCM DCCD DCCY