Instrumentos de medida para dismenorreia: desenvolvimento para avaliação de funcionalidade e presenteísmo, e propriedades de medida para avaliação da interferência sobre atividades

Abstract

Introduction: Dysmenorrhea is defined as menstrual pain of uterine origin and can often cause functional disability and lead to absenteeism from school and work. Assessment of a person with dysmenorrhea can be done using Patient-Reported Outcome Measures (PROMs), which are patient-administered measures/questionnaires. Although PROMs exist to assess different aspects of the health of women with dysmenorrhea, it is not known which PROM(s) can be recommended for use according to their measurement properties (validity, reliability, and responsiveness). Furthermore, no PROM has been adapted for Brazil to assess the interference of dysmenorrhea on women’s physical, social and mental activities, and no PROM has been developed to assess functioning and presenteeism related to dysmenorrhea in people (cis and transgender) with dysmenorrhea. Therefore, this thesis has the following objectives divided into four research studies: 1) identify and critically evaluate the available evidence on the measurement properties of PROMs used for dysmenorrhea; 2) translate and evaluate the measurement properties of the Dysmenorrhea Symptom Interference (DSI) scale into Brazilian Portuguese (DSI-BrPt) with women with dysmenorrhea; 3) develop and evaluate the measurement properties of the Dysmenorrhea-related Impact on Functioning Scale (DIFS) to assess the impact of dysmenorrhea on functioning in cis and transgender individuals; and 4) develop and evaluate the measurement properties of the Dysmenorrhea-related Presenteeism Scale (DPS) to assess the impact of dysmenorrhea on work and/or study productivity in cis and transgender individuals. Methods: Search 1 is a systematic review of measurement properties that included original studies, without restrictions on language and publication date, that reported one or more measurement properties of PROMs for dysmenorrhea. All phases of the study followed the recommendations of the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN). Research studies 2, 3, and 4 were conducted online, but only research study 2 included cisgender Brazilian women with dysmenorrhea. Research studies 3 and 4 included people with dysmenorrhea (cis and transgender) for the development of DIFS and DPS based on the existing PROMs for dysmenorrhea, functioning and presenteeism, and the International Classification of Functioning, Disability and Health (ICF) for DIFS. For research studies 2, 3 and 4, the following measurement properties were evaluated according to COSMIN: content validity, structural validity, internal consistency, measurement invariance, test-retest reliability, measurement errors and hypothesis testing for validity of construct. The PROMs score and cutoff were developed using Item Response Theory. Results: In research study 1, 30 studies and 19 PROMs were reviewed. The instruments varied in terms of the construct measured and the measurement properties. The methodological quality of the studies and the quality of the PROMs were variable, but only the DSI can be recommended for use. In research study 2, the DSI-BrPt showed sufficient measurement properties in a sample of 1,387 women with dysmenorrhea. This PROM has 8 items with a single-factor structure and its total score was classified as “no interference” (1 point), “mild interference” (1.01 to 2.50 points), “moderate interference” (2.51 to 3.50 points), and “severe interference” (3.51 to 5 points). For research studies 3 and 4, the DIFS and DPS demonstrated sufficient measurement properties in a sample of 3,335 people with dysmenorrhea (cis and transgender). The DIFS has a bi-factor structure with 15 items divided into the factors “Bodily Functions” and “Daily Activities and Social Participation”, with “Functioning” as the general factor. The DPS has a single-factor structure of 9 items, and the cut-off point to classify the person with a significant impact of dysmenorrhea on work and/or study productivity was 38 points. Conclusions: The DSI was the only PROM identified in research study 1 that has the potential to be recommended due to its sufficient rating combined with moderate quality of evidence for content validity. In Study 2, the DSI-BrPt was found to be valid and reliable for assessing the impact of dysmenorrhea on the physical, social and mental activities of Brazilian women. In research studies 3 and 4, the DIFS and DPS demonstrated sufficient measurement properties to assess the impact of dysmenorrhea on functioning and work productivity, respectively, and to study cis and transgender people with dysmenorrhea.