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Valuing Idiopathic Pulmonary Fibrosis (IPF)

Patient Reported Outcome Measures (PRoM) Solution

Idiopathic Pulmonary Fibrosis (IPF) is a progressive debilitating condition associated with high morbidity and mortality. The only curative treatment option is lung transplantation. The impact that existing pharmacological and non-pharmacological management approaches have on patients quality of life is not well characterized.

A standardized approach to measure patients’ experience of current and emerging existing treatments on individuals is needed. To determine the cost-effectiveness of a treatment and its ability to improve health outcomes, it is essential to fully understand the needs and desires of the patient.
The IPF PRoM offers a robust patient centered solution and strengthens the endpoint model.


Developing value for health

By capturing the patient’s perspectives, PRoM’s allow a better understanding of the benefits and harms of existing and new therapeutic interventions, thereby improving the quality and effectiveness of treatment. The IPF PRoM is a quick and easy method to effectively measure the health status of patient diagnosed IPF. The IPF PRoM allows you to deliver more credible, scientifically valid outcomes that directly translates into the value of your products.


How IPF PRoM Works

The IPF PRoM is a 12 item questionnaire with a simple scoring system making it easy to use. It can be administered electronically or as hard copy. It provides measurement of quality of life based on vigorously selected item descriptors and criteria. The IPF PRoM provides essential information to evaluate health status.


Benefits and methodology

1) IPF PRoM can claim both face and content validity given the rigorous patient centered methodology
2) IPF PRoM was developed using triangulated qualitative methods and psychometrics underpinned by FDA PROM guidelines
3) Classical Test theory achieved a Kaiser-Meyer-Olkin measure of sampling adequacy of 0.922
4) Cronbach’s alpha demonstrated excellent internal reliability.
5) Test retest reliability of all domains achieved a high Intraclass correlation > 0.80. Total ICC 0.92
6) IPF PRoM reliably measures the physical and psychological experience of breathlessness; emotional well being and fatigue
7) IPF PRoM measures health status impacting quality and efficiency of treatments
8) Capturing IPF PRoM data over time will enhance the quality of patient care

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