Mastocytosis Quality of Life Questionnaire (MC-QoL)
Mastocytosis Quality of Life Questionnaire (MC-QoL)
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Description
The Mastocytosis Quality of Life Questionnaire (MC-QoL) is the first and only mastocytosis-specific quality of life questionnaire available so far. It is a short, valid and reliable instrument to determine QoL impairment in patients with cutaneous and indolent systemic mastocytosis.
MC-QoL was developed by a Charité team of scientists led by PD Dr. Frank Siebenhaar, PD Dr. Karsten Weller and Prof. Dr. Marcus Maurer. Briefly, during the development phase, 62 questions (items) were generated. Subsequently, item reduction was performed by means of impact analysis and factor analysis as well as by checking for content and face validity. As a result, 27 items were selected and included in the final instrument, which was then tested for its validity, reliability, and influence factors.
Quick Facts MC-QoL:
Number of items: 27
Suited for: All adult (>18 years old) patients with cutaneous and indolent systemic mastocytosis
Recall period: retrospectively, 2 weeks
Domains: Symptoms, Functioning/Social life/Emptions/Skin
Scoring: Domain scores (0 - 100 each) and total score (0 – 100), scoring template available
Copyright: Moxie GmbH (www.moxie-gmbh.de)
Terms of use: Free for routine clinical use and non-commercial research, small fee for use in clinical trials/commercial research
Reference:
Siebenhaar F, von Tschirnhaus E, Hartmann K, Rabenhorst A, Staubach P, Peveling-Oberhag A, Wagner N, Martus P, Carter MC, Metcalfe DD, Church MK, Maurer M, Weller K. Development and validation of the mastocytosis quality of life questionnaire: MC-QoL. Allergy. 2016 Jun;71(6):869-77. doi: 10.1111/all.12842. Epub 2016 Feb 15. PMID: 26797792
Commercial or non-commercial
If you are interested or on request, we will be happy to send you our PROMs (Patient Reported Outcomes Measures) on the various topics by e-mail.
Please understand that we have to charge a fee of 15 Euro per PRO when using our PROMs for commercial purposes. Commercial use include, for example, use in industry-sponsored studies, market research and similar purposes.
By non-commercial use we mean e.g. use for consultation hours in hospitals and private practices, use within scientific studies without sponsoring. The prerequisite is that no commercial interest is pursued.
Frequently Asked Questions
Why are there PRO (Patient Reported Outcomes) products that cost nothing and others that cost 15 Euros?
If you plan to use PRO (Patient Reported Outcomes) products (e.g. AAS, AE-QoL, UCT) commercially, there is a small fee per patient (15 €). This applies, for example, to industry-sponsored trials and clinical studies or market research.
You can order free versions, if you plan to use them for non commercial purposes, e.g. for patient management or for academia-driven non commercial
research projects. When you order PRO (Patient Reported Outcomes) products, these instruments are sent per e-mail.
I would like to use PRO (Patient Reported Outcomes) products commercially. Do I have to buy one version each for every time I plan to use it, even in the same patient?
No. Each PRO (Patient Reported Outcomes) products you purchase can be used multiple time by the same patient.
What do I do if PRO (Patient Reported Outcomes) products are not available for my country or in the language I need?
The version you are looking for is probably already under development. Feel free to get in touch with us by e-mail to check when it will be available.