Understanding Patient Preferences Research for Acromegaly treatment

APF Admin |

Recently, the Australian Pituitary Foundation (APF) has had the privilege of supporting Community and Patient Preference Research (CaPPRe) Pty Ltd, an independent research company, in their study on patient preferences for Acromegaly treatment.

What is a patient preferences research? How is the purpose different from that of clinical trials?

As an expert committed to including patient perspective on the value of medicines, this is what CaPPRe has to say….

Photo: CaPPRe

Patient Value Mapping

Incorporating patient values or preferences into health outcomes is known as Patient Value Mapping (PVM). While clinical trials for treatments may provide evidence of important clinical endpoints when measuring the safety and efficacy of treatment, increasingly humanistic factors such as burden of disease, adherence to therapy, and impact on quality of life both on the patient and society need to be taken into consideration when assessing treatments.

Understanding patients’ preferences for treatments of a specific disease area such as acromegaly as well as the attributes and trade-offs that patients are willing to accept in respect to treatment may assist in more informed decisions for current and future treatment options.

Purpose of the Study

For these reasons, CaPPRe is conducting a preference research study on behalf of a pharmaceutical company with the aim of gaining a greater understanding of the treatment preferences of patients, clinicians, and nurses for somatostatin analogue (SSA) treatments used for acromegaly. In addition to identifying patient preferences for SSA acromegaly treatments, the inclusion of clinician and nurse preferences will also allow for the identification of potentially divergent preferences for acromegaly treatments between these three groups which may not be known.  It is anticipated that the results of this research project will be published and/or presented in a variety of forums.

What’s Involved

As Acromegaly is a very rare disease, we are very thankful to the APF for supporting us in reaching out to people with acromegaly who may be interested in completing the study. Participation involves completing a 30-min online survey and we are looking for around 15 participants or more with acromegaly to be able to say what people with acromegaly prefer with regards to SSA treatments. You will receive payment for completing the study to compensate you for your time and effort.

Privacy and Confidentiality

Any data collected through the online survey will be analysed and reported in aggregate format only. This means that any information obtained in connection with this research project that can identify you will remain confidential and is only known to CaPPRe. The research data will be kept securely for a period of 5 years within Australia.

How to register your interest in this study

If you would like to participate, please click on the following link to see if you are eligible: https://bit.ly/PT_APF. If you are, you can directly progress to completing the study. 

Should you require more information please contact the researcher Karen Winkler at karen.winkler@cappre.com.au.