Assessment of Cancer Care Access, Delivery and Other Challenges Faced by Patients with Cancer in Malaysia

1. Introduction

Patients with cancer experience significant disruptions to their care including timely access to cancer screening, diagnostic work-up and/or treatments, close monitoring of cancer symptoms and treatment side effects, financial support, and support from family, friends as well as advocacy groups.

This survey aims to collect information in the domains of cancer care access and delivery, as well as other challenges that could negatively impact on patients during this pandemic (over the last twelve months). Through this collated information, it will help all cancer care stakeholders in Malaysia and Low to Middle Income Countries (LMICs)regionally to formulate bespoke action plans that could support our patients.

Cancer CRI Centre abides by the Malaysian Medical Council Confidentiality Guidelines and Personal Data Protection Act 2010 (Malaysia).

All information provided will be kept in a secured database provided by the Survey Monkey system. We will use the de-identified aggregate information to inform the public and other stakeholders about the results of our study. No personal, identified information will be made available to anyone/entity besides the Cancer CRI Centre Research and Management team.

Any monetization of personal, identified patient information is strictly prohibited and would go against our company's privacy policy.

We look forward to your assistance in completing the survey and helping our cancer community in building an ecosystem that is tailored to your needs.

Thank you,
Dr Ahmad Sufian Ab Rahman
Study lead
Cancer CRI Centre, Malaysia
E: admins@cancercricentre.com
W: www.cancercricentre.com

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* 1. I have read and review the aim of the study mentioned, the two privacy policies, and understood the rationale and significance of the information provided. I hereby, provide my informed consent to participate in this survey.

Yes

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* 2. Age

18-24

25-34

35-44

45-54

55-64

65+

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* 3. Gender

Male

Female

Prefer not to mention

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* 4. Ethnicity (as per official Identification Card)

Malay

Chinese

Indian

Orang Asli

Iban

Kadazan

Bidayuh

Dayak

Other Bumiputera / Other non-Bumiputera

Prefer not to mention

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* 5. In which state do you currently reside?

Kuala Lumpur

Labuan

Putrajaya

Selangor

Johor

Pahang

Negeri Sembilan

Perak

Kedah

Pulau Pinang

Perlis

Kelantan

Terengganu

Sabah

Sarawak

Melaka

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* 6. Please select the area that you reside in

City

Suburban

Rural

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* 7. Stage of Cancer

Early stage (1-2)

Stage 3

Advanced stage (stage 4)

Unsure

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* 8. What cancer treatment are you currently receiving?

Chemotherapy

Targeted therapy

Immune therapy

Radiation therapy

Combination of several treatments (chemotherapy, targeted therapy, immune therapy, radiation therapy)

Other treatment - locoregional approach (surgery, ablation, etc.)

Not on any treatment

If not on any treatment, do you participate in any cancer screening program (e.g. mammography, cervical screening or colorectal cancer screening) or cancer surveillance follow up (e.g. periodic examination, scans, scopes by your cancer care providers)? Please indicate which one ,e.g. cancer screening - mammography.

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* 9. If you haven’t had treatment for your cancer, was it due to (select all that applies)

Your doctors did not think that treatment would help you

You did not think that treatment would help you

You had a problem with insurance coverage or financing the treatment

You were afraid or anxious about the treatment

You did not have someone to help you make the visit appointments or go with you

Your visit appointment times were hard to fit into your schedule

No transportation

Other (please specify)

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* 10. If you have been experiencing postponement of clinic appointment , what was the average number of weeks of delay?

1-2 weeks

3-4 weeks

5-6 weeks

More than 6 weeks

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* 11. What was the reason/s for the postponement?

Miscommunication between provider and patient

Clash between scheduled clinic appointment and patient's other matters.

No transport

Nobody to bring to attend the appointment

Clinic was fully booked

Cancer care provider was not available

Patient was admitted to the hospital

Other (please specify)

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* 12. If you have been experiencing postponement of treatment , what was the average number of weeks of delay?

1-2 weeks

3-4 weeks

5-6 weeks

More than 6 weeks

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* 13. What was the reason/s for the postponement?

Miscommunication between provider and patient

Clash between scheduled treatment appointment and patient's other matters.

No transport

Nobody to bring to attend the appointment

Treatment was fully booked

Cancer care provider was not available

Patient was admitted to the hospital

Other (please specify)

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* 14. Did your provider offer tele-health / video call as a new form of clinic appointment?

Yes

Not applicable

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* 15. If your condition worsens between treatments, how quick can you secure an appointment with your care provider?

1-2 weeks

3-4 weeks

5-6 weeks

More than 6 weeks

Unsure

Not Applicable

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* 16. Are the treatments available to you locally (within 50 km)?

Yes

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* 17. If you have to travel, how far do you have to go to receive treatment?

50-75km

75-100km

100-150km

More than 150 km

Not Applicable

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* 18. How often do you have to go for out-of-station treatment?

Every month

Quarterly

Bi-annually

Annually

Unsure

Not Applicable

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* 19. Do you have a patient support group?

Yes

Not Applicable

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* 20. Does your family member have/been involved in a caregiver support group?

Yes

Not Applicable

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* 21. Do you know where to find a support group?

Yes

Not Applicable

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* 22. Does the oncologist explain the treatment plan thoroughly to the patient and family members and explain what to expect during the treatment?

Yes

Not Applicable

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* 23. Have you received any support services as part of your cancer care? (please select all that apply)

Home care doctors and/or nurses

Nutritionist

Mental health professional/worker

Physical Therapist

Social Worker

Religious support group

Not Applicable

I’ve had no support group

Other (please specify)

Assessment of Cancer Care Access, Delivery and Other Challenges Faced by Patients with Cancer in Malaysia

1. Introduction

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* 1. I have read and review the aim of the study mentioned, the two privacy policies, and understood the rationale and significance of the information provided. I hereby, provide my informed consent to participate in this survey.

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* 2. Age

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* 3. Gender

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* 4. Ethnicity (as per official Identification Card)

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* 5. In which state do you currently reside?

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* 6. Please select the area that you reside in

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* 7. Stage of Cancer

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* 8. What cancer treatment are you currently receiving?

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* 9. If you haven’t had treatment for your cancer, was it due to (select all that applies)

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* 10. If you have been experiencing postponement of clinic appointment , what was the average number of weeks of delay?

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* 11. What was the reason/s for the postponement?

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* 12. If you have been experiencing postponement of treatment , what was the average number of weeks of delay?

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* 13. What was the reason/s for the postponement?

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* 14. Did your provider offer tele-health / video call as a new form of clinic appointment?

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* 15. If your condition worsens between treatments, how quick can you secure an appointment with your care provider?

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* 16. Are the treatments available to you locally (within 50 km)?

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* 17. If you have to travel, how far do you have to go to receive treatment?

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* 18. How often do you have to go for out-of-station treatment?

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* 19. Do you have a patient support group?

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* 20. Does your family member have/been involved in a caregiver support group?

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* 21. Do you know where to find a support group?

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* 22. Does the oncologist explain the treatment plan thoroughly to the patient and family members and explain what to expect during the treatment?

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* 23. Have you received any support services as part of your cancer care? (please select all that apply)

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* 24. Were there any support services that you feel you needed but did not receive?

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* 25. Why did you not receive the support services you felt you needed?