The purpose of this study is to use the Medication Adherence Reasons Scale (MAR-Scale) to determine the extent of non-adherence to specific medications indicated to treat cystic fibrosis, hemophilia (A or B), idiopathic pulmonary fibrosis, myasthenia gravis, and sickle cell disease, and to identify the top patient-reported reasons for non-adherence. Internal reliability of the MAR-Scale will also be assessed in each condition.
Study Type
OBSERVATIONAL
The MAR-Scale is a 20-item questionnaire based on commonly reported reasons for non-adherence to medications.
To use the MAR-Scale to determine the extent of non-adherence to specific medications indicated to treat a range of rare diseases.
Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.
Time frame: Baseline
To use the MAR-Scale to determine the extent of non-adherence to specific medications indicated to treat a range of rare diseases.
Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.
Time frame: 3 months
To use the MAR-Scale to determine the extent of non-adherence to specific medications indicated to treat a range of rare diseases.
Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.
Time frame: 6 months
To use the MAR-Scale to determine the extent of non-adherence to specific medications indicated to treat a range of rare diseases.
Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.
Time frame: 9 months
To use the MAR-Scale to determine the extent of non-adherence to specific medications indicated to treat a range of rare diseases.
Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.
Time frame: 1 year
To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
Tally of reasons for non-adherence.
Time frame: Baseline
To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
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Tally of reasons for non-adherence.
Time frame: 3 months
To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
Tally of reasons for non-adherence.
Time frame: 6 months
To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
Tally of reasons for non-adherence.
Time frame: 9 months
To use the MAR-Scale to identify the top patient-reported reasons for non-adherence to specific medications indicated to treat these rare diseases.
Tally of reasons for non-adherence.
Time frame: 1 year
To perform psychometric analysis of the MAR-Scale questionnaire based on data collected from rare disease patients.
Use the 200 responses collected from each condition to determine the Cronbach's alpha of the scale for each condition.
Time frame: Baseline