Invisible Battles

Survey Title: Invisible battles — people experiences with cancer therapies

Study Background

Cancer treatments have improved significantly over the last few decades, yet many patients around the world continue to experience barriers such as high cost, limited access, side effects, and delayed treatment decisions. This survey aims to collect real-life experiences from cancer patients and survivors to understand which medicines were used, how accessible they were, and how patients, provider and family perceived their effectiveness and burden.

The insights gathered will support the writing of an advocacy book, highlighting the urgent need for:

• more accessible cancer therapies,

• affordable medicines with fewer side effects,

• globally fair access to lifesaving treatments.

Your participation will help influence researchers, funders, governments, and global health stakeholders.

Confidentiality

• All responses are anonymous.

• No identifying information will be linked to your answers unless you intentionally choose to share it.

• You may stop or skip any question at any time.

The information you are providing will be stored and used only for the advocacy presentations, publications, or planned book.

Consent to Participate and Publish *

Please tick all that apply:

I understand the objectives of the study and voluntarily agree to participate.I agree to the processing and storage of the information I provide for this survey.I agree that anonymized information (quotes or data) from my responses may be used in publications, presentations, or the planned advocacy book.

SECTION 1 — About You

1. Age group

SkipUnder 2525–3435–4445–5455–6465+Prefer not to say

2. Gender

SkipFemaleMalePrefer not to sayOther

Other (please specify)

3. Country of residence

4. Type of cancer diagnosed (select all that apply)

BreastProstateLungColon/RectalLeukemia/LymphomaSkin/MelanomaCervical/OvarianLiverStomachOtherPrefer not to say

Other cancer type

5. Current status

SkipCurrently under treatmentCompleted treatmentIn remissionRelapsedPrefer not to say

SECTION 2 — Treatment Details

6. Which type(s) of treatment have you received? (select all that apply)

SurgeryChemotherapyRadiation therapyTargeted therapyImmunotherapyPhototherapyHormone therapyAlternative/TraditionalOtherPrefer not to say

Other treatment

7. Main medicine/drug received:

SkipI remember the nameI do not rememberPrefer not to say

Medicine name

8. Was this medicine used:

SkipAloneWith other medicinesCombined with surgery/radiation/otherPrefer not to say

9. Treatment duration

Skip< 1 month1–6 months6–12 months1–3 years> 3 yearsNot surePrefer not to say

10. Dosing frequency

SkipDailyWeeklyMonthlyIrregular / as neededNot surePrefer not to say

11. Did you switch to a different medicine?

SkipYesNoPrefer not to say

If yes: Which one?

SECTION 3 — Accessibility and Cost

12. Access to treatment

SkipVery easySomewhat easyDifficultVery difficultPrefer not to say

13. Affordability

SkipFully covered / freePartially affordableBarely affordableNot affordablePrefer not to say

14. Where was treatment obtained?

Public hospitalPrivate clinicPharmacyClinical trialAbroadOtherPrefer not to say

15. Did you need financial assistance or fundraising?

SkipYesNoPrefer not to say

SECTION 4 — Experience & Perception

16. Before starting treatment, how confident were you that the medicine would work?

SkipVery confidentSomewhat confidentUnsureDoubtfulPrefer not to say

17. How would you rate side effects experienced?

SkipNoneMildModerateSeverePrefer not to say

18. Did side effects make you consider stopping treatment?

SkipYesNoPrefer not to say

19. Overall satisfaction with the medicine

SkipVery positiveSomewhat positiveNeutralNegativePrefer not to say

20. How optimistic was your healthcare provider about the treatment?

SkipHighly optimisticModerately optimisticNeutralNot optimisticPrefer not to say

21. How optimistic was your family about the treatment?

SkipHighly optimisticModerately optimisticNeutralNot optimisticPrefer not to say

SECTION 5 — Knowledge and Education

22. How much did your medical team teach you about your medicine?

SkipA lotSomeVery littleNothing at allPrefer not to say

23. Did you research the medicine yourself?

SkipYes, a lotYes, someNoPrefer not to say

24. Who educated you the most about the treatment?

SkipDoctorPharmacistNurseFamily memberOnline sourceOtherPrefer not to say

SECTION 6 — Reflection & Advice

25. How did you feel upon finishing or stopping treatment?

RelievedHopefulAnxiousScared of recurrenceOtherPrefer not to say

Other feeling

26. What advice would you give to someone starting this medicine? (select all that apply)

Be patientAsk questionsSeek supportTrust the processPrefer not to say

27. What advice would you give to someone wanting to stop treatment? (select all that apply)

Speak with your doctorDon’t give up too quicklySeek emotional supportExplore other options with care teamOtherPrefer not to say

Other advice

SECTION 7 — Treatment Equity & Unmet Needs

28. What was the biggest barrier you faced in receiving treatment? (select up to 2)

Cost of treatmentDelayed diagnosis / late referralLack of specialized cancer centersLong distance / transportationLack of availability of medicinesLack of insurance / financial coverageNot enough medical information providedOtherPrefer not to say

Other barrier

29. In your opinion, what should change in health systems to help future cancer patients? (select all that apply)

Lower cost of medicinesFaster diagnosis and referralMore cancer research and new treatmentsMore emotional and psychological supportClearer information about medicinesEasier access to clinical trialsOtherPrefer not to say

Other change

30. At any point, did you feel your concerns or symptoms were not taken seriously?

SkipYesNoUnsure / Prefer not to say

31. Did you ever delay treatment because of cost, access, or fear of side effects?

SkipYesNoPrefer not to say

If yes: what was the main reason?

SkipCostSide effectsNo access to medicineOtherPrefer not to say

Other reason

32. Do you believe new cancer medicines should prioritize:

SkipFewer side effectsHigher effectivenessAffordabilityEasier access for all countriesAll of the abovePrefer not to say

33. Global cancer equity statement

Do you believe access to cancer treatment should be a universal human right?

SkipYesNoUnsure / Prefer not to say

34. If you could speak directly to the people who can develop, fund, regulate or boost cancer therapies, what would you ask them to change/improve/offer?

SECTION 8 — Optional Follow-Up

35. Would you be open to a follow-up conversation to provide more information or simply just to learn about the outcome from this survey?

SkipYesNoPrefer not to say

36. If yes, please provide your email or contact (optional):

Or contact the researcher directly: christian.nkanga@unikin.ac.cd