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Development and Pretesting of a Questionnaire to Assess Patient Experiences and Satisfaction with Medications (PESaM Questionnaire)

التفاصيل البيبلوغرافية
العنوان: Development and Pretesting of a Questionnaire to Assess Patient Experiences and Satisfaction with Medications (PESaM Questionnaire)
المؤلفون: Xana van Jaarsveld, Jack F.M. Wetzels, Rémy L M Mostard, Marlies S. Wijsenbeek, Adrienne H. Rotteveel, Nelleke C. Tak, M. Gelens, Merel Kimman, Carmen D. Dirksen, Marjolein Storm, Nicole C. A. J. van de Kar, Kioa L. Wijnsma
المساهمون: Pulmonary Medicine, Neurology, Erasmus MC other, MUMC+: KIO Kemta (9), MUMC+: MA Nefrologie (9), Health Services Research, RS: CAPHRI - R2 - Creating Value-Based Health Care
المصدر: The Patient
Patient 2008, 10(5), 629-642. Springer Science+Business Media
Patient-Patient Centered Outcomes Research, 10, 629-642
Patient-Patient Centered Outcomes Research, 10, 5, pp. 629-642
The Patient: patient-centered outcomes research, 10(5), 629-642. Adis International Ltd
سنة النشر: 2017
مصطلحات موضوعية: Male, Nursing (miscellaneous), Orphan Drug Production, PREFERENCES, COVERAGE DECISIONS, Health administration, 0302 clinical medicine, ECULIZUMAB, Surveys and Questionnaires, Content validity, 030212 general & internal medicine, Original Research Article, Atypical Hemolytic Uremic Syndrome, Netherlands, CLINICAL-PRACTICE GUIDELINE, 030503 health policy & services, Patient Preference, Middle Aged, 3. Good health, Patient Satisfaction, Female, REPORTED OUTCOME MEASURES, 0305 other medical science, medicine.medical_specialty, PSYCHOMETRIC VALIDATION, Psychometrics, Pyridones, Antineoplastic Agents, Antibodies, Monoclonal, Humanized, Interviews as Topic, 03 medical and health sciences, Patient satisfaction, Patient experience, medicine, Humans, Face validity, Aged, Retrospective Studies, Health economics, business.industry, Reproducibility of Results, Usability, CARE, Focus group, Idiopathic Pulmonary Fibrosis, Renal disorders Radboud Institute for Molecular Life Sciences [Radboudumc 11], Physical therapy, Quality of Life, HEMOLYTIC-UREMIC SYNDROME, IDIOPATHIC PULMONARY-FIBROSIS, Renal disorders Radboud Institute for Health Sciences [Radboudumc 11], business, HEALTH TECHNOLOGY-ASSESSMENT
الوصف: Background The aim of this study was to develop, together with the Lung Foundation Netherlands and Dutch Kidney Patients Association, patients and clinicians, a measure to evaluate patient experiences with the orphan drugs pirfenidone (for idiopathic pulmonary fibrosis [IPF]) and eculizumab (for atypical haemolytic uraemic syndrome [aHUS]), as well as a generic measure of patient experiences and satisfaction with medications. Methods Development of the Patient Experiences and Satisfaction with Medications (PESaM) questionnaire consisted of four phases: literature review (phase I); focus groups and individual patient interviews (phase II); item generation (phase III); and face and content validity testing (phase IV). Literature review aimed to identify existing disease-specific and generic patient experience measures to provide guidance on the domains of medication use relevant to patients, the number of items and type of response categories, and to generate an initial pool of items. Subsequent focus groups and patient interviews were conducted to gain insight into the perceived effectiveness of the therapies, the burden of side effects, and how the medication impacted on a patient’s daily life. Focus groups and interviews were recorded and transcribed verbatim. Coding was carried out by highlighting passages in the text and assigning each passage a code representing the following predefined categories: (1) perceived effectiveness; (2) side effects; (3) ease of use; and (4) impact of medication. Using data from phase I and II, a panel of experts selected items relevant for inclusion in the questionnaire. Individual patient interviews with IPF and aHUS patients (n = 18), using a retrospective verbal probing technique, were conducted to assess face validity, time needed to fill out the questionnaire, and content validity. Results The PESaM questionnaire that was developed consisted of two disease-specific modules that assessed patient experiences with pirfenidone for the treatment of IPF, and eculizumab for the treatment of aHUS, a generic module, applicable to any medication, and a module to assess patient expectations. Review of the literature identified multiple disease- or medication-specific questionnaires and two generic patient satisfaction questionnaires. Common domains across most questionnaires were effectiveness, side effects, ease of use and overall satisfaction. Patient interviews revealed the social impact (e.g. unable to go outside) of side effects such as photosensitivity associated with pirfenidone and the risk of infection associated with eculizumab. Each PESaM module focuses on patients’ perceived effectiveness of the medication, side effects, and ease of use, and the impact these aspects have on physical and emotional health and daily life. The generic module additionally includes items related to satisfaction with the medication. Individual interviews with patients in phase IV confirmed, in general, that questions and response options of the modules were clear and content validity was good. The mean time to complete the modules ranged from 6 min for the disease-specific (aHUS) module to 9 min for the generic module. Conclusions We developed the PESaM questionnaire to quantitatively assess patient experiences and satisfaction with medications. A validation study is currently underway to examine the psychometric properties of the PESaM questionnaire. Electronic supplementary material The online version of this article (doi:10.1007/s40271-017-0234-z) contains supplementary material, which is available to authorized users.
وصف الملف: application/pdf
اللغة: English
تدمد: 1178-1653
URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::1428ba8a5937de7bbd6641cb7645c17f
https://doi.org/10.1007/s40271-017-0234-z
حقوق: OPEN
رقم الأكسشن: edsair.doi.dedup.....1428ba8a5937de7bbd6641cb7645c17f
قاعدة البيانات: OpenAIRE
الوصف
تدمد:11781653