MEASURING TREATMENT PREFERENCES OF PATIENTS DIAGNOSED WITH IDIOPATHIC PULMONARY FIBROSIS USING BEST-WORST SCALING

Author(s)

Camponeschi GF1, Bridges JF2, Danoff SK1, Richardson B1
1Johns Hopkins University, Baltimore, MD, USA, 2John Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

OBJECTIVES: Idiopathic pulmonary fibrosis (IPF) is a rare, degenerative disease. While recently approved therapies provide hope, research is needed to assess the value of treatment benefits and risks. This study sought to develop and test a patient-centered survey instrument to value the benefits and risks of IPF therapies.  METHODS: Using patient and stakeholder engagement, researchers developed a survey instrument for measuring the treatment preferences of IPF patients. This led to developing a novel best-worst scaling instrument to assess six treatment attributes, each defined across three levels, including lung function, shortness of breath, persistent cough, gastrointestinal problems, skin problems and risk of liver toxicity. Surveys were completed in person or by mail. Patients were shown 18 treatment profiles, created through a main-effect orthogonal experimental design, and asked to identify the best and worst aspect of each treatment. Preference weights were estimated using a simple score consisting of the number of times a level was chosen as best minus the number of times it was chosen as worst and divided by the total number of times the level was shown. Conditional on the level chosen in the experiment, attribute importance was estimated by comparing the range of scores across each attribute, relative to all such deviations.  RESULTS: Thirty-five participants completed the survey. The most important attribute preferred was effect on lung function (35%), followed by risk of gastrointestinal problems (23%), risk of liver toxicity (12%) and impact on persistent cough (11%). Patients estimated the least important attributes to be risk of skin problems (9%) and impact on shortness of breath (9%). CONCLUSIONS: This research demonstrates the merits of a community-centered approach to survey instrument development to measure preferences and illustrates the value in quantifying preferences. Further research is needed to assess the generalizability of these findings and the implications for decision making.

Conference/Value in Health Info

2015-05, ISPOR 2015, Philadelphia, PA, USA

Value in Health, Vol. 18, No. 3 (May 2015)

Code

PP4

Topic

Patient-Centered Research

Topic Subcategory

Stated Preference & Patient Satisfaction

Disease

Rare and Orphan Diseases, Respiratory-Related Disorders

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