a collaboration with ZIN, the Dutch Health Care Institute, within the GetReal project
The Quality, not only the Quantity, of our lives matters.
Melanoma has touched our lives in a way a healthy person cannot imagine- as little as we could before Melanoma hit us.
A Melanoma diagnosis changes priorities, values and what we consider useful or risky and most of us have made the painful experience that even people close to us do not always understand.
Quality of Life matters to Melanoma patients. For this reason, we would like to give Melanoma patients and carers the opportunity to freely tell us what Quality of Life truly means to them.
What do we hope to learn?
We hope to find out what truly matters to Melanoma patients and carers about the Quality of their lives. How does the stage of the disease, the place you live, the therapies you take affect the Quality of your Life? We also want to see whether we can already find this out from general social media- or whether networks like ours provide deeper insights.
Quality of Life data is increasingly used to decide which treatments are approved and reimbursed in Europe. For this reason, it is in our interest as Melanoma patients and advocates to have a clear understanding based on data of what matters to Melanoma patients themselves.
What is different about this survey?
Most Quality of Life surveys for patients are designed by healthy individuals and aim for high internal validity; this means that the test will always give similar results when repeated. Questions are closed- so patients are prompted to answer to predefined questions.
From our experience as advocates we know that
1. healthy individuals usually do not fully understand a Melanoma patient's situation and
2. that there are important differences between Melanoma patients in different stages of the disease.
For this reason, this survey has a large open part- for you to tell us what Quality of Life means to YOU- and allows to make the difference between different Melanoma stages and treatments. We want to know what matters for whom!
This survey is not intended to achieve the internal validity of the usual Quality of Life tools that you might have seen in clinical trials- this would be impossible. Our aim however is to address external validity- do we usually measure what matters most to Melanoma patients?
What are we going to do with the results?
Answers will obviously be anonymous and results can therefore not be traced back to single persons. The results of this survey will be published and widely shared through all MPNE channels- we believe patients have the right to know the results of the research they are contributing to!
What are we going to use the results for?
As Melanoma advocates, we would like to understand what truly matters to Melanoma patients to base our advocacy action on data- not personal opinions. We hope to learn what makes the Quality of Life in Melanoma better- so that we can support that- and what makes it worse- so we can direct our advocacy efforts at it.
Please help us to make a difference to Melanoma patients in Europe- we greatly appreciate your insights and thank you for spreading the word:
Research by Melanoma patients for Melanoma patients-
to understand what truly matters to patients.
To Quantity AND Quality of Life in Melanoma!
The melanoma quality of life survey
last update 11th Jan 2016 BR
MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe