Review of Questionnaire about the Quality of Life of People on Immunotherapy or Targeted Therapy
PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT

 Opinions about a Questionnaire Assessing Quality of Life of People on Immunotherapy or Targeted Therapy for Melanoma

QUT Ethics Approval Number 1700000823

RESEARCH TEAM

Principal Researcher: Prof Monika Janda, Queensland University of Technology (QUT)

Aim of study

The purpose of this study is to improve a questionnaire assessing the quality of life of people on immunotherapy or targeted therapy for melanoma.

The research team is looking for people 18 years and over who have had experience of immunotherapy or targeted therapy for the treatment of melanoma.

Participation

If you agree to participate, you will be sent a copy of the proposed questionnaire assessing quality of life of people on immunotherapy of targeted therapies. We would like to ask you to review the questions and provide comments and suggestions of improvement to the questions (if any).

You are welcome to contact us on 07 3138 3018, if you will like to discuss the questionnaire or provide further comments.

You will also complete a brief demographics survey, which will include questions such as age, education level, date of melanoma diagnosis and melanoma treatments to date.

Your participation in this project is completely voluntary. If you agree to participate you do not have to complete any question(s) you are uncomfortable answering. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT or with your workplace. If you do agree to participate you can withdraw from the project without comment or penalty. Any identifiable information already obtained from you will be destroyed.

Expected benefits

It is expected that this project will not directly benefit you. However, it may help to improve insight into the quality of life of people on immunotherapy and targeted therapies for melanoma. The research team will provide you with a general summary of the research findings once all the data has been gathered either by post, email, or in person.

Risks

There are minimal risks associated with your participation in this project.

However, QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT projects who may experience discomfort as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant.

Alternatively, you can contact the Cancer Council Helpline on 13 11 20 if you have any questions about cancer. Lifeline also provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support.

Privacy and Confidentiality

All comments and responses will be treated confidentially unless required by law. The names of individual persons are not required in any of the responses.

Only senior members of the research team will have access to any data collected during the study period. Any data collected as part of this project will be stored securely as per QUT’s Management of research data policy.

Please note that non-identifiable data collected in this project may be used as comparative data in future projects or stored on an open access database for secondary analysis.

Consent to Participate

The return of the consent form is accepted as an indication of your consent to participate in this project.

Questions / further information about the project

If you have any questions or require further information please contact the researcher listed below.

Prof Monika Janda, 07 3138 3018 email: improvinghealth@qut.edu.au

Concerns / complaints regarding the conduct of the project

QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email humanethics@qut.edu.au. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. 

By ticking the box below, you are indicating that you:Have read and understood the information document regarding this project.Have had any questions answered to your satisfaction.Understand that if you have any additional questions you can contact the research team.Understand that you are free to withdraw at any time, without comment or penalty.Understand that you can contact the Cancer Council Helpline on 13 11 20 if you have any questions about cancer or QUT counselling services on 07 3138 0999 if you experience distress.Understand that if you have concerns about the ethical conduct of the project you can contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email humanethics@qut.edu.au.Understand that non-identifiable data collected in this project may be used as comparative data in future projects.Agree to be contacted again should we require further clarification in regards to your responses or your interest to be invited to future studies on this topic.Agree to participate in the project.
By ticking the box below, you are indicating that you:

  • Have read and understood the information document regarding this project.
  • Have had any questions answered to your satisfaction.
  • Understand that if you have any additional questions you can contact the research team.
  • Understand that you are free to withdraw at any time, without comment or penalty.
  • Understand that you can contact the Cancer Council Helpline on 13 11 20 if you have any questions about cancer or QUT counselling services on 07 3138 0999 if you experience distress.
  • Understand that if you have concerns about the ethical conduct of the project you can contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email humanethics@qut.edu.au.
  • Understand that non-identifiable data collected in this project may be used as comparative data in future projects.
  • Agree to be contacted again should we require further clarification in regards to your responses or your interest to be invited to future studies on this topic.
  • Agree to participate in the project.