(For adult subjects)

Title of study: Information Needs and Supportive Care for Sarawak Cancer Patients: Perceptions and Expectations

1. Name of investigator and institution:

Dr Melissa Lim Siaw Han
Pharmacy Department, Sarawak General Hospital

Dr Voon Pei Jye
Radiotherapy Unit, Sarawak General Hospital

Dr Adibah Ali
Surgical Department, Sarawak General Hospital

Ms Doreen Kiu Kher Lee
Pharmacy Department, Sarawak General Hospital

Mr Yap Kian Yee
Pharmacy Department, Sarawak General Hospital

Assoc Prof Dr Fitri Suraya Mohamad
Society for Cancer Advocacy and Awareness Kuching

Dr Jessica Sim Xue Ping
Society for Cancer Advocacy and Awareness Kuching

Dr Lim Jia Yi
Society for Cancer Advocacy and Awareness Kuching

Mr Cheng Yuong Kang
Society for Cancer Advocacy and Awareness Kuching

2. Name of sponsor:


3. Introduction:

It is important that you understand why the research is being done and what it will involve. Please take your time to read through and consider this information carefully before you decide if you are willing to participate. Ask the study staff if anything is unclear or if you would like more information. After you are properly satisfied that you understand this study, and that you wish to participate, you must sign this informed consent form.

Your participation in this study is voluntary. You do not have to be in this study if you do not want to. You may also refuse to answer any questions you do not want to answer.  If you volunteer to be in this study, you may withdraw from it at any time. If you withdraw, any data collected from you up to your withdrawal will still be used for the study. Your refusal to participate or withdrawal will not affect any medical or health benefits to which you are otherwise entitled.

This study has been approved by the Medical Research and Ethics Committee, Ministry of Health Malaysia.

4. What is the purpose of the study?

The purpose of this study is to determine the type of information that Sarawak cancer patients need and to measure the extent to which these information needs are being met by measuring the level of patient’s satisfaction. This research will be conducted for duration of 6 months (01/02/2022 till 31/07/2022). The expected number of participants is 359 individuals.

5. What are my responsibilities when taking part in this study?

It is important that you answer all the questions asked by the study staff honestly and completely which will take about within 45 minutes of your time. The questionnaire is divided into two sections.

Section A: Demographic profile of respondents

  • Gender
  • Age
  • Race
  • Marital status
  • Highest education level
  • Employment status
  • Household income
  • Number of dependents
  • Cancer-related profile
  • Health insurance

Section B: Importance and Satisfaction Level of Information Received

  • Diagnosis
  • Treatment option
  • Surgery
  • Treatment monitoring
  • Pain management
  • Psychosocial support/resources
  • Sexual aspects of care
  • Financial care
  • Overall experience

Section C: Open-ended Questions (Optional)

  • Patients with cancer journey
  • Information and support needed
  • Social support

If you decide to withdraw in the middle of the study, you can opt out of this site voluntarily and no action will be taken to retain the data you have entered, hence all data will be destroyed.

6. What are the benefits of being in this study?

There may or may not be any benefits to you. This study provides a platform for the improvement in cancer care management by assessing and establishing the information needs of cancer patients during treatment in Sarawak. Through the identification of the gaps in cancer care, corrective and preventative measures can be conducted to improve the barriers and predicaments within cancer care and to improve the quality of cancer care management holistically.

7. What are the potential risks and side effects of being in this study?

Respondents had minimal risk because this study only involved studies using questionnaires. Respondents may refuse to answer any questions they are uncomfortable with.

8. Who is funding the research?

This study required no funding and respondents will not be paid for their participation in this study.

9. Will my medical information be kept private?

All your information obtained in this study will be kept and handled in a confidential manner, in accordance with applicable laws and/or regulations. When publishing or presenting the study results, your identity will not be revealed without your expressed consent. Individuals involved in this study, qualified monitors, and auditors, and governmental or regulatory authorities may inspect the study data, where appropriate and necessary.

Participants’ personal data will be kept in a password-protected database and will be linked only with a study identification number. The identification number will be used on the data sheets instead of participant identifiers. The period of data collection will be ongoing for about 6 months from the date this survey is distributed out to potential respondents, or upon reaching our minimum responses, researchers will be able to access it. All data will be entered into a computer which is password protected. When the study is completed, data in the computer will be copied to a CD and the data in the computer will be deleted after that. The CD and hardcopy data will be stored securely and maintained for a minimum of three years after the study is completed. Participants will not be allowed to view their personal study data as the data will be consolidated into a database. Subjects can write to request access to study findings after the results are validated and if the data is relevant to the clinical management of the participants.

10. Who should I call if I have questions?

If you have any questions about the study or if you think you have a study related injury and you want information about this study, please contact Dr Melissa Lim Siaw Han at telephone number 012-8875558.

If you have any questions about your rights as a participant in this study, please contact: The Secretary, Medical Research & Ethics Committee, Ministry of Health Malaysia, at telephone number 03-3362 8407/8205/8888.