Follow-Up 5 (2014) - CCSS

LTFULong-Term Follow-UpThank you for participating in the Long-Term Follow-Up Study. Your participation in this researchcontinues to provide us with valuable information in the fight against childhood cancer and similarillnesses.It has been a few years since we sent you our last general survey and we would now like to updateyour information. By completing this survey, you will bring us up-to-date on your health. The length oftime to complete this survey varies, but generally takes 30-60 minutes. You can mail the completedsurvey to us using the enclosed envelope.You can also complete this survey online using your smartphone, tablet or computer at:www.stjude.org/LTFUsurveyAYour personalized login ID is your date of birth. Your password is:If you prefer to complete the survey with a trained interviewer over the phone, then please contact ustoll free at 1-800-775-2167 or via email at LTFU@stjude.org.You can be assured that we will respect your privacy at all times. Your name or other identifiers will notbe used in any report of our findings, or released to any person or agency, except study investigators.Your generosity in participating is greatly appreciated.Sincerely,The LTFU study staffThe questions in this survey relate to:Today's date:// 2 0 1Person completing this survey is:Your relationship:SelfParentOther:If you are completing the survey on the participant'sbehalf, be aware that all survey questions are about FirstName Please! Do not mark below this lineEditSCSurvey #1901Code2163501604

LTFULong-Term Follow-UpParticipating InstitutionsSt. Jude Children's Research HospitalAnn & Robert H. Lurie Children's Hospital of ChicagoChildren's Healthcare of Atlanta/Emory UniversityChildren's Hospital at StanfordChildren's Hospital ColoradoChildren's Hospital of Orange CountyChildren's Hospital of PhiladelphiaChildren's Hospital of Los AngelesChildren's Hospital of PittsburghChildren's Hospitals & Clinics of MinnesotaChildren's National Medical CenterCity of Hope National Medical CenterCook Children's HospitalDana-Farber Cancer Institute/Children's Hospital BostonMattel Children’s Hospital at UCLAMayo ClinicMemorial Sloan-Kettering Cancer CenterMiller Children's HospitalNationwide Children's HospitalRiley Hospital for Children - Indiana UniversityRoswell Park Cancer InstituteSeattle Children's HospitalSt. Louis Children's HospitalTexas Children's HospitalToronto Hospital for Sick ChildrenUAB/The Children's Hospital of AlabamaUniversity of California at San FranciscoUniversity of Chicago Comer Children's HospitalUniversity of Michigan - Mott Children's HospitalUniversity of MinnesotaU.T. SouthwesternU.T.M.D. Anderson Cancer CenterOur mailing address is:Toll-free phone number:Long-Term Follow-Up StudySt. Jude Children's Research HospitalDepartment of EpidemiologyMail Stop 735262 Danny Thomas PlaceMemphis, TN 38105-36781-800-775-2167e-mail: LTFU@stjude.orgwww.stjude.org/ltfuPlease! Do not mark below this line2Last modified:05/23/2017 08:15:20 AM4383501600

INSTRUCTIONS FOR COMPLETING THE QUESTIONNAIREPlease follow these rules in completing this questionnaire. If you have any questions about completing thisquestionnaire, please call 1-800-775-2167.1. Use a black ballpoint pen or a number 2 black pencil. Do not use a felt-tip or roller-ball pen. These may causesmudging. If you must erase answers, erase them completely.2. When marking boxes, make an x inside the box (see examples below).3. Make no stray marks of any kind. Please keep the form as clean as possible.4. Written responses must stay within the boxes provided:GrapeINCORRECTCORRECTGrapeMARKING EXAMPLESBelow are some examples of how to fill out this questionnaire. Please look these over before you begin.Example 11. During the past month, did youparticipate in any physical activities orexercises such as running, aerobics, golf,gardening, bicycling, swimming,wheelchair basketball, or walking forexercise?No X YesNot sureYesNoExample 2If yes,age atfirst use2. Have you ever taken. . .a. BIRTH CONTROL PILLS such as Demulen, Lo-Ovral, Loestrin, Norinyl, Norplant,Ortho-Novum, Ovral, --------------------------------- XIf yes, specify the name of the drug(s) or indicate you do not know the specific nameb. MEDICATIONS TO LOWER CHOLESTEROL OR TRIGLYCERIDES, such aslovastatin, Zocor (simvastatin), Pravachol (pravastatin), Crestor, Lipitor, Zetia, Tricor,Vytorin, ------------------------------------------------If yes, specify the name of the drug(s) or indicate you do not know the specific nameX3 4mevacorExample 33. When was this condition diagnosed?0 41 9 9 5Month (mm)Year (yyyy)Please! Do not mark below this line36722501609

In the past we have asked you questions similar tothose below. We would like to update this information.A5. What is your current employment status? Includeunpaid work in the family business or farm.(Mark all that apply)A1. What is your current height without shoes?Working full-time (30 or more hours per week)Working part-time (less than 30 hours per week)FeetInchesCaring for home or family (not seeking paid work)Unemployed and looking for workA2. What is your current weight without shoes?Unable to work due to illness or disabilityRetiredPoundsStudentOtherA3. Since this time last year, have you lost more than10 pounds unintentionally (not due to dietingor exercise)?If Other, please describe.YesNoNot sureA4. What is the highest grade or level of schoolingyou have now completed?If you are notcurrently workingfull or part time. . .1-8 years (grade school)Go to Question A7.9-12 years (high school) but did not graduateA6. The following questions are about your presentoccupation. Please write your job title and briefdetails of what you do. If you have more thanone job, please give the title of your main job.Completed high school/GEDTraining after high school, other than collegeSome collegeA6a. Main job title:College graduatePost graduate levelOtherIf Other, please describe.A6b. Please briefly describe the primarytasks in your job:Please! Do not mark below this line48326501601

A7. Over the last year, what was the total income of thehousehold you live in?MEDICAL CAREB1. During the 2 year period between April 2015and April 2017, which of the followinghealthcare providers (excluding dentists) did yousee or talk to for medical care? This includesroutine and sick care. (Mark all that apply)Less than 20,000 20,000 - 39,999 40,000 - 59,999 60,000 - 79,999None 80,000 - 99,999Primary care clinician in the community (e.g.,family physician, general internist, pediatrician,nurse practitioner, physician's assistant)Over 100,000Go to Question B4, next page.Clinician at a cancer center (e.g., oncologist, nursepractitioner or physician's assistant, other cancerspecialist)Don't knowOther Medical specialist (e.g., endocrinologist,cardiologist, surgeon)A8. During the past year, how many people in thishousehold were supported on this income?Psychiatrist1Psychologist or counselor2Physical or occupational therapist3Other4If Other, please specify.56789 or moreB2. During this 2 year period, how many times didyou see a doctor?A9. Over the last year, what was your personal income?NoneNone7-10 timesLess than 20,0001-2 times11-20 times3-4 timesMore than 20 times 20,000 - 39,999 40,000 - 59,9995-6 times 60,000 - 79,999B3. As you know, you were asked to participate in thisstudy because you were once diagnosed with acancer, leukemia, tumor, or similar illness. Howmany of the visits to the doctor indicated inquestion B2 (during the 2 year period) were relatedto this previous illness? 80,000 - 99,999Over 100,000A10. Do you currently have health insurance coverage?Canadian residentNone7-10 visitsNo1-2 visits11-20 visits3-4 visitsMore than 20 visitsYes5-6 visitsPlease! Do not mark below this line53798501609

B4. When was your MOST RECENT routine check-upwhere a doctor examined you and did tests to seeif you had any health problems from your canceror your cancer treatment?B5. When do you plan to have your NEXT visit with adoctor in order to examine you for any healthproblems from your cancer or your cancertreatment?Less than 1 year agoLess than 1 year from now1-2 years ago1-2 years from nowMore than 2 years but less than 5 years ago3-4 years from now5 or more years ago5 or more years from nowNeverNeverGo to Question B5.Don't knowB4a. Where was this check-up? (Mark only one)B6. During the PAST 12 MONTHS, how many timeshave you gone to a HOSPITAL EMERGENCYROOM about your own health (This includesemergency room visits that resulted in a hospitaladmission)?At a cancer survivor clinicAt a cancer center, but not in a cancer survivor clinicAt my primary care doctor's officeOthertimesIf Other, please specify.B7. Do you currently have a cancer survivorship careplan and/or a summary of treatment for your cancer(records from your cancer doctor that have detailsabout your cancer treatment and medical tests youshould have to check for future health problems)?B4b. At this check-up, did your doctor give you adviceabout what to do to reduce risks or discuss/ordermedical screening tests?NoYesNot sureB8. Does your local or primary care doctor have a copyof your cancer survivorship care plan and/or asummary of your treatment for your cancer?NoYesI don't have a primary care doctorNot sureI have a primary care doctor but he/she does nothave a copy of my cancer survivorship care planand/or a summary of my treatment for my cancerB4c. When was the last time that you had a medicalvisit with a cancer specialist (oncologist)?YesLess than 1 year agoNot sure1-2 years agoB9. How often do you carefully check your wholebody (including the skin on your back and back ofyour legs) for any sign of skin cancer?More than 2 years but less than 5 years ago5 or more years agoOnce a monthDon't knowEvery few monthsB4d. When was the last time you had a visit to aspecial clinic for cancer survivors?Every 6 monthsLess than 1 year agoEvery year1-2 years agoNeverMore than 2 years but less than 5 years agoB10. In the PAST 12 MONTHS, has your regularhealthcare provider carefully examined yourwhole body for any sign of skin cancer?5 or more years agoNeverNoYesNot sureDon't knowPlease! Do not mark below this line63855501603