MARIA FERNANDA ABALEM DE SA CARRICONDO
Projetos de Pesquisa
Unidades Organizacionais
Instituto Central, Hospital das Clínicas, Faculdade de Medicina - Médico
LIM/33 - Laboratório de Oftalmologia, Hospital das Clínicas, Faculdade de Medicina
LIM/33 - Laboratório de Oftalmologia, Hospital das Clínicas, Faculdade de Medicina
5 resultados
Resultados de Busca
Agora exibindo 1 - 5 de 5
- Construct Validity of Inherited Retinal Disease-Specific Patient-Reported Outcome Measures(2023) JAYASUNDERA, K. Thiran; ABUZAITOUN, Rebhi O.; POPOVA, Lilia; ABALEM, Maria Fernanda; ANDREWS, Chris A.; LACY, Gabrielle D.; FRESCO, David M.; MUSCH, David C.PURPOSE: To evaluate aspects of construct validity of the Michigan Retinal Degeneration Questionnaire (MRDQ) and the Michigan Vision-related Anxiety Ques-tionnaire (MVAQ). center dot METHODS: Subjects with a clinical diagnosis of an inherited retinal disease (IRD) were recruited prospec-tively and 3 tests were used to assess construct valid-ity: the ability to distinguish different IRD phenotypes; test a priori hypothesis of an association between vision-related anxiety and vision-related disabilities; and corre-late MRDQ and MVAQ with the National Eye Insti-tute Visual Functioning Questionnaire 25 (NEI VFQ-25) and the Impact of Vision Impairment (IVI). One-way analysis of variance (ANOVA) was used to com-pare different phenotypes for mean domain scores for MRDQ/MVAQ. Pearson correlations were performed be-tween; Cone-Function Anxiety and Central Vision con-trolling for better eye visual acuity, Rod-Function Anxi-ety and Scotopic Function controlling for visual field area (III4e and IV4e), and scores of MRDQ/MVAQ, NEI VFQ-25, and IVI. center dot RESULTS: The study sample consisted of 146 pa-tients evenly divided between males and females, and mean age was 50 years. The 1-way ANOVA test was significant for distinguishing IRD phenotypes in 6 do-mains of MRDQ/MVAQ. Cone-Function Anxiety corre-lated with Central Vision controlling for visual acuity, Rod-Function Anxiety correlated with Scotopic Func-tion controlling for visual field area, and all domains in MRDQ/MVAQ had significant correlations with NEI VFQ-25 and IVI composite scores. center dot CONCLUSION: MRDQ and MVAQ domenstrate aspects of construct-validity set forth by the US Food and Drug Administration. The study futher supports the use of both patient-reported outcome measures in IRD clinical trials and natural history studies. (Am J Ophthalmol 2023;248: 116-126. (c) 2022 Elsevier Inc. All rights re-served.)
- Effects of duration and number of symptoms on vision-related anxiety in patients with Inherited Retinal Diseases(2023) POPOVA, Lilia T. T.; ABUZAITOUN, Rebhi O. O.; ABALEM, Maria Fernanda; ANDREWS, Chris A. A.; MONDUL, Alison M. M.; LACY, Gabrielle D. D.; MUSCH, David C. C.; JAYASUNDERA, K. ThiranBackground: Patients with Inherited Retinal Diseases (IRDs) are at increased risk for vision-related anxiety due to progressive and irreversible vision loss, yet little is known about risk factors for anxiety in these patients. Materials and Methods: This was a single-center, retrospective cross-sectional study at a large academic center. 128 adults with an IRD and without other significant eye conditions were recruited between December 2016 and March 2020. Participants were asked about the duration and number of symptoms they had in the following vision domains: reading, contrast vision, color vision, glare/light sensitivity, night vision, and peripheral vision. The outcomes of interest were the two domains of the Michigan Vision-Related Anxiety Questionnaire (MVAQ), rod- and cone-function related anxiety. We conducted an adjusted analysis to isolate the independent effect of duration and number of symptoms on vision-related anxiety. Results: Of 126 participants had complete data, 62 (49%) were female and 64 (51%) were male, with an average age of 49 years (range: 18-87). Patients with duration of symptoms for greater than 25 years had an adjusted anxiety theta that was one-half standard deviations lower than patients with symptoms for less time. Patients with higher number of symptoms had higher anxiety theta after adjusting for confounding variables (p < 0.0001). Conclusions: The number of symptoms but not the duration of symptoms, is an independent risk factor for vision-related anxiety. Patients with more symptoms are at higher risk for vision-related anxiety. Having symptoms for longer than 25 years may reduce this anxiety.
- Self-reported visual function and psychosocial impact of visual loss in EYS-associated retinal degeneration in a Portuguese population(2023) MARQUES, Joao Pedro; SOARES, Ricardo Machado; SIMAO, Silvia; ABUZAITOUN, Rebhi; ANDREWS, Chris; ALVES, C. Henrique; AMBROSIO, Antonio Francisco; MURTA, Joaquim; SILVA, Rufino; ABALEM, Maria Fernanda; JAYASUNDERA, K. ThiranPurpose: To evaluate self-reported visual function and the psychosocial impact of visual loss EYSassociated retinal degeneration (EYS-RD) using two patient-reported outcome (PRO) measures: Michigan Retinal Degeneration Questionnaire (MRDQ) and Michigan Vision-related Anxiety Questionnaire (MVAQ).Methods: Cross-sectional, single-center study conducted at a tertiary care hospital in Portugal. Patients with biallelic EYS variants were invited to participate. Clinical data including demographics, ETDRS best corrected visual acuity (BCVA) in the better-seeing eye and genetic testing results were collected. Interviews were carried out during clinic visits or by phone between November 2021 and February 2022. A blind grader used horizontal and vertical spectral domain optical coherence tomography (SD-OCT) scans to manually measure ellipsoid zone (EZ) width in the nasal, temporal, superior and inferior macular quadrants to calculate the EZ area.Results: Forty-nine patients (53.1% males; mean age 53 +/- 14 years) were included. A positive correlation (p < .05) was found between age and most MRDQ domain scores (central vision, color vision, contrast sensitivity, scotopic function, photopic peripheral vision and mesopic peripheral vision). A negative correlation was found between both BCVA and EZ area across all MRDQ domains. In MVAQ, SD-OCT EZ area negatively correlated with both rod function and cone function-related anxiety. Neither age, BCVA or gender correlated with MVAQ domains.Conclusions: This study provides strong evidence supporting a correlation between PRO measures and both functional and structural clinician-reported outcomes. The use of MRDQ and MVAQ adds a new dimension to our understanding of EYS-RD and establishes both PRO measures as important disease outcome measures.
- The validation of inherited retinal disease-specific patient-reported outcome measures in adolescent patients(2023) SELVAN, Kavin; ABUZAITOUN, Rebhi; ABALEM, Maria Fernanda; VINCENT, Ajoy; ANDREWS, Chris A. A.; LACY, Gabrielle D. D.; FARJO, Rafid; KAO, Karissa; KAO, Krystal; DAGNELIE, Gislin; MUSCH, David C. C.; JAYASUNDERA, K. Thiran; HEON, ElisePurpose: To determine the validity of the validate the adult patient-reported outcome measure tools, the Michigan Retinal Degeneration Questionnaire (MRDQ) and Michigan Vision-Related Anxiety Questionnaire (MVAQ), in adolescent patients with inherited retinal diseases (IRDs).Methods: Ninety-one adolescent patients diagnosed with IRDs were recruited at the Hospital for Sick Children (University of Toronto) and the Kellogg Eye Center (University of Michigan). The patients were administered the MRDQ, MVAQ, and Patient Health Questionnaire-4 (PHQ-4). Test-retest variability was assessed in eighteen patients within 14 days of the initial administration. Adolescent responses were analyzed for validity and reliability. As a further validation step, comparisons were made to adult data from the original MRDQ and MVAQ studies to ensure consistency in response ranges.Results: The existing MRDQ and MVAQ content and format could accurately detect the impact of IRD on activities of daily living in adolescents with IRDs. No floor/ceiling effects were identified, test-retest reliability was established (r = 0.73-0.86), and no items were excluded after differential item functioning analysis. Domain and trait associations with visual acuity and IRD phenotypes were similar between adolescents and adults.Conclusions: The MRDQ and MVAQ are psychometrically validated questionnaires for which we have shown validity for use in adolescent patients with IRDs.
- The State of Patient-Reported Outcome Measures for Pediatric Patients with Inherited Retinal Disease(2022) SELVAN, Kavin; ABALEM, Maria F.; LACY, Gabrielle D.; VINCENT, Ajoy; HEON, ElisePatient-reported outcome measures (PROMs) are questionnaires that assess health outcomes meaningful to the patient. PROMs have multiple applications, such as supporting clinicians' decision-making for patient care, understanding the impact of disease on patient functioning, and evaluating the efficacy of therapeutics. Though PROMs were developed for various eye conditions, no PROM was tailored to pediatric patients with inherited retinal disease (IRD). Hence, a literature search was conducted using MEDLINE and Embase to identify PROMs potentially relevant to this patient population. This review evaluated selected pediatric PROMs against the US Food and Drug Administration (FDA) guidelines and found restricted use in the context of IRD. As there is a need for PROMs tailored to pediatric patients with IRD, we provide a perspective on applying the International Society for Pharmacoeconomics and Outcomes Research and FDA standards on the development of PROMs specific to IRD. Plain Language Summary Inherited retinal diseases refer to a group of genetic conditions that affect the eye's light-sensing cells and lead to vision loss. When a patient undergoes an eye assessment, the measures used are technical (e.g., visual acuity, visual field) and do not routinely address the patient's experience. It is increasingly evident that the technical tools used do not really reflect how patients' vision affects their daily lives. Questionnaires designed to assess how a condition impacts a daily activity are referred to as patient-reported outcome measures. The perspective of the impact of a condition on daily activities differs between adults and children. These tools are being created to evaluate health outcomes important to the patient on the basis of their condition and age. This is especially important when determining the value of therapies from the patient perspective. To date, no such questionnaire has been designed for pediatric patients with inherited retinal disease, an important cause of blindness. We explored the literature to evaluate existing pediatric vision tools and found that those could not be used to fill this gap. Given that we found a need to develop questionnaires tailored to pediatric patients with IRD, we also provide insight into how such a tool can be created for this population.