Additional material
A SurveyonQualityof Life
EstaEncuestatambiénestadisponibleenEspañol,llamandoal444-4850
DearPatient: Youhave been selected toparticipate in this surveyon qualityoflifein breastcancersurvivors. Weare interested inhow you feelaboutyour condition,the choices you hadto make, and who or whatmayhave helped you make your choices. We would greatlyappreciate yourhelp.Thissurveywilltakeabout15 minutes. Please circle the answerthatbestshows howyou feel.Thissurveyis confidential. Please do NOTput down youraddressoryour name anywhere onthis survey.Ifyou do not feelcomfortableansweringanyof the questionsinthis survey, please feelfree to skip them. Thank you.
Please tellus about your breast cancer treatments.
1.Whenwere youfirstdiagnosed with breastcancer?
Year:
Month:
(year/month,e.g. 2001/December)
2.What stage was your cancer diagnosis?
Stage 0 Stage I Stage II Stage III Stage IV Don’t know
3. When you werefirstdiagnosed, had your breastcancer:spreadto anylymph nodes underthearm? No Yes
…spread totheother breast?No Yes …spreadto other organsof the body?No Yes
4.How welldo you feelyourtreatment options were explainedby your doctor?
Notatall Alittle bit Somewhat Quite a bit Verymuch
5.Ifyou are receivingtreatments today, whattreatments are you receiving?
Radiation Chemotherapy Hormone therapy Other:
6.Are you receivinganyhormonal therapysuch astamoxifen (Nolvadex®,Istubal®,or Valodex®),oranaromatase inhibitor(AI)such as Exemestane (Aromasin®) orAnastrazole(Arimidex®)? No Yes
7.What surgicaltreatmentoptions were offeredfor thebreast?
Totalmastectomy Partialmastectomy(lumpectomy)
8.What breastsurgerydid yourdoctorrecommend the most?
Totalmastectomy Partialmastectomy(lumpectomy) Initiallypartialbuteventuallyneededtotalmastectomy
9. Did you seeka second opinion?No Yes
10. Ifyes, what surgerydidthe second doctorrecommend?Total mastectomy Partialmastectomy(lumpectomy)
11. What breastsurgerydid you choose?Total mastectomy Partial mastectomy(lumpectomy)
Initiallypartialbuteventuallyneededtotalmastectomy Did notundergo breastsurgery
12.Did you have surgeryfor the other breast(prophylacticmastectomy), even though the cancer hadnotspread to the other breast? No Yes
13.Of the following, pleaseCIRCLE threeitems that have mostinfluenced your choiceoftreatment.
a.Myself-imageb. Iwant to live as longaspossiblec. Iwas concerned aboutside effectsfromtreatment d. Myspouse/partner e. Myfriends f.. Myfamily g. My religion h.Costoftreatment/myinsurance
i.Length oftherapyj. Mydoctor’srecommendation
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4.Are thereany otherimportant reasonsin choosing your breast cancertreatmentwethatdid not cover?
Foryourtreatment:(Choose “1= StronglyDisagree”, “2=Disagree”, “3=Unsure”, “4=Agree”, 5=“StronglyAgree”)
15.Itwas theright decision:12345
16. Iregret thechoicethatwas made: 1 2 3 4 5
17.Iwould choosethesame choiceif Ihad todo itover again:12345
18. Mychoice did me a lotof harm: 1 2 3 4 5
19.Mydecision wasa wise one:12345
The questions below are about treatmentwith radiation.
20. Was radiation recommended to you?No Yes
21. Did you take radiation? (if no, please skipto question 24) No Yes
22. Ifyou tookradiation,did/do you have anylong term(longer than3 months)side effects? No Yes
23. Ifyou had to doit allover again, wouldyou choose radiation? No Yes
The questions below are about treatmentwith chemotherapy.
24. Was chemotherapyrecommended to you?No Yes
25. Did you take chemotherapy? (if no, pleaseskip toquestion29) No Yes
26. Did you complete yourchemotherapyregimen?No Yes
27. Ifyou had to doit allover again, wouldyou choose chemotherapy? No Yes
28. Did/do you have anylongterm(longer than 6 months) side effects fromchemotherapy?No Yes
The questions below are about treatmentwith hormone therapy
29. Were anti-hormone pills (e.g. tamoxifen oranaromatase inhibitor)recommended to you? No Yes
30. Did you take anti-hormone pills? (if no, pleaseskip to question33) No Yes
31.Did you have noticeable side-effectsfromthe anti-hormone pills?No Yes
32. Did you stop takingthepills because ofside-effects? No Yes
Please tellus about your support systemfor breast cancer
The followingquestionsrelateto the emotionalsupport you received when diagnosed with breastcancerorcontinueto receive and whether you found themhelpful.
33. Did you belongto asupportgroup?No Yes
34. Do you still belongtoa group? (ifno, please skipto question 36) No Yes
Forthefollowing questions, pleaseratefrom“1= not at all”to “5= extremely,” N/A = notapplicable
35.Did you find beingina supportgroup helpful?12345
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36. Ifyouneverbelonged to a support group,do you thinkit might be helpful? 1 2 3 4 5
In battlingwith breastcancer, women find strength fromdifferentareas intheirlives.We would like to know:
37.How helpfuldid you find emotional support fromyourfamilyto you?12345
38. How helpfulis emotional supportfrom yourfriend(s)? 1 2 3 4 5
39.How about emotional support fromyour religion(s)?12345
40. How helpfulis emotional supportfrom your doctor(s)? 1 2 3 4 5
41.Did you get support fromother healthcare professionals(e.g.socialworker, psychiatrist)? YesNo
42. If“Yes” toQuestion41, how helpful did you find professionalsupport? 1 2 3 4 5
Questions about your general health:
43.How would you rate your overall healthduringthe pastweek?
(verypoor) 1 2 3 4 5 6 7 (excellent)
44.How would you rate your overall qualityof life duringthe pastweek?
(verypoor) 1 2 3 4 5 6 7 (excellent)
45.Please answer usingthe followingselection: 1=notat all; 2=alittle; 3=quite a bit; 4=verymuch
a.Do you have anytrouble doingstrenuous activities, like carryinga heavyshoppingbagor a suitcase?
1234
b. Do you have anytrouble takingalongwalk? 1 2 3 4 c. Do you have anytrouble takingashortwalkoutsideofthe house? 1 2 3 4 d. Do you need tostayin bedor a chair duringthe day? 1 2 3 4 e. Do you need help with eating, dressing,washing yourselfor usingthe toilet? 1 2 3 4
46.In the past seven days, haveyou been distressed or bothered by:(Choose“1=notatall”to “5= extremely”)
a.Faintness12345 b. No interestin dailyactivities 1 2 3 4 5 c. Nervousness 1 2 3 4 5 d. Chest pain 1 2 3 4 5 e. Feelinglonely 1 2 3 4 5 f. Feelingtense 1 2 3 4 5g. Feelingnauseous/wantto vomit 1 2 3 4 5 h. Feelingblue 1 2 3 4 5i. Feelingscared 1 2 3 4 5 j. Shortnessof breath 1 2 3 4 5k. Feelingworthless 1 2 3 4 5 l. Have had panic episodes 1 2 3 4 5m. Numbness or tingling 1 2 3 4 5 n. Feelinghopeless 1 2 3 4 5
o.Feelingrestless12345
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p. Bodyweakness 1 2 3 4 5 q. Thoughtof hurting yourself 1 2 3 4 5 r. Have had uncontrollable fear 1 2 3 4 5
47.In the past seven days, haveyou experienced these problems? (1=not at all; 2=alittle; 3=quite a bit;
4=verymuch)
a.Did you have a drymouth?1234 b. Did food and drinktaste differentthan usual? 1 2 3 4 c. Were your eyes painful,irritated orwatery? 1 2 3 4 d. Have you lostanyhair? 1 2 3 4 e. Were you upset bythelossof your hair(if applicable)? 1 2 3 4 f. Did you feelillor unwell? 1 2 3 4g. Did you have hotflushes? 1 2 3 4 h. Did you have headaches? 1 2 3 4i. Have you felt physicallyless attractive asa result ofyour disease ortreatment? 1 2 3 4 j. Have you been feelinglessfeminineas aresultof yourdiseaseortreatment? 1 2 3 4k. Did you finditdifficulttolookat yourself naked? 1 2 3 4 l. Have you been dissatisfiedwith your body? 1 2 3 4m. Were you worriedabout your health inthe future? 1 2 3 4 n. Did you have anypainin your armor shoulder? 1 2 3 4 o. Did you have a swollenarmor hand? 1 2 3 4 p. Wasit difficultto raise your armor to move it sideways? 1 2 3 4 q. Have you had anypain theareaof youraffected breast? 1 2 3 4 r. Wasthearea of youraffected breastswollen? 1 2 3 4s. Wasthearea of youraffected breastoversensitive? 1 2 3 4 t. Have you had skin problems on or inthearea ofyour affected breast(e.g., itchy, dry, flaky)?
1 2 3 4 u. Were you limited indoingeither your workor other dailyactivities? 1 2 3 4 v. Were you limited inpursuing your hobbiesor other leisuretime activities? 1 2 3 4w. Did pain interfere with your dailyactivities? 1 2 3 4
x. Have you had difficultyinconcentratingon things, like readinga newspaper orwatchingtelevision?
1 2 3 4
48.During the past fourweeks: (1=not at all; 2=alittle; 3=quite a bit; 4=verymuch)
a.To what extent were you interestedin sex?1234
b. To what extent were you sexuallyactive (with or without intercourses)? 1 2 3 4
c.Ifyou have been sexually active,to whatextentwassex enjoyable for you?1234
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d. Do you thinkthatyour breastcanceroritstreatments have interfered with your sex life?
Please tellus about yourself
49.Whatis your age? years old
1 2 3 4
50.Whatis your raceorethnicity? Pleasecheckas manyboxes as apply.
White Black Asian Hispanic Other Prefer not to answer
51.Whatis your relationshipstatus(please checkall that apply)?
Single Married Divorced Widowed Partnered/Cohabitating
52.What wasthe highest level of education you have completed?
Some high schoolorless High school diploma or GED Associatesdegree
Bachelor’s Degree Graduate orprofessional degree
53.How manychildrendo you have?Ihave: son(s) and daughter(s)
54.Have you gone throughmenopause? No Yes IfYES, at whatage? yearsold
55.Did you have health insurance coverage for your breast cancer treatments?
Yes, completelycovered Yes, but Ihave to payas well (% paid bymyself) Ido not have insurance
56. Whattypes ofhealthinsurance do you have? Please writein here:
57.Has your physical condition ormedical treatmentscaused you financial difficulties? Notatall Alittle Quite abit Verymuch
58. Are you currentlyphysicallydisabled?No Yes
Ifyes, isit because ofbreastcancer? No Yes Partially(Ihave another disabilityas well)
59.Have you had a recurrence ofyour breastcancer/has your breastcancercome back(includinga differenttype of breast cancer)? Yes No
60.How much do you worryabout ifthe cancer maycome back?12345
61.How much do you worryabout dyingfrombreastcancer?12345
62.0n the back page, pleasewrite down any comments youmay havefor us.
End of survey. Please enclose the surveyin theself-addressed,stamped envelope and mailitbackto us. Wehavealso enclosed a postcard foryou to fill out and send back to us. All postcards will be entered into a rafflefor prizes.
Please mail the post cardseparately.Thank youvery much!
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