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Global efforts to reduce Maternal Mortality Rates (MMR) have been significant, but researchers are exploring new approaches to address stalled progress and enduring health inequities. This scoping review offers an analytic synthesis of maternal and infant health (MIH) research in the low-middle income North African Islamic country of Morocco over 22 years, a mapping of the themes, research gaps, geographies, and methodologies, 2000-2022. Morocco is an official MIH success story with excellent health indicators, yet indicators do not address local contexts, gender issues, or health disparities. To understand how medical research has reflected social reality over the past 22 years, we explored not just what is known, but how it is known, where it is known, what remained unseen, and why. Four databases were searched: OVID: MEDLINE, Embase, APA PsycINFO, and EBSCO: CINAHL. 4590 abstracts were identified, 3131 abstracts screened, and 402 full MIH articles and 128 sub-group articles identified and subject to data extraction. The 402 full MIH articles were subject to qualitative thematic analysis, classified by 34 primary research themes and explored especially for gender, health equity, and methodology. Findings included significant geographic research disparities; four regions were the location of 75% of research and many regions remained virtually "unseen" by research. The best-equipped urban public hospitals in higher-income regions produced the most research, creating an urban, hospital-based research perspective. Maternal health articles predominated, often >50% more than articles published about infant health. Infants studied were mostly neonates. Socially marginalized women were often invisible to research, as were private healthcare, NGO care (non-governmental civic organizations), and healthcare in community. In articles, researchers recommended new policies, new laws, health system reform, and government actions to advocate for patients. Three solutions emerged to broaden the research perspective: increase geographic breadth, address missing topics and populations, and embrace interdisciplinary methods.
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BACKGROUND: Patient-reported outcome measures (PROMs) for hair loss focus mainly on Alopecia Areata. We created a PROM (i.e., HAIR-Q) that is applicable to any hair loss condition. The HAIR-Q measures satisfaction with hair. PATIENTS/METHODS: Concept elicitation interviews were conducted and analyzed to develop a draft scale. Content validity was established through multiple rounds of patient and expert input. Psychometric properties of the scale were examined in an online sample (i.e., Prolific) using Rasch measurement theory (RMT) analysis. Test-retest reliability and tests of construct validation were examined. RESULTS: Content validity of a 22-item draft scale was established with input from 11 patients, 12 experts and an online Prolific sample of 59 people who had a variety of hair loss treatments. In the RMT analysis (n = 390), 8 items were dropped. Data for the 14-item scale fit the Rasch model (χ2 = 89.85, df = 70, p = 0.06). All 14 items had ordered thresholds and good item fit. Reliability was high with person separation index and Cronbach alpha values ≥0.91, and intraclass correlation coefficient of 0.94 based on a sample of 97 participants. Higher (better) scores on the scale were associated with having more hair, looking younger than ones' age, satisfaction with hair overall, being less bothered by hair loss, and for those who had a hair loss treatment in the past year, being more satisfied with their hair now than before treatment (p < 0.001). CONCLUSION: The HAIR-Q evidenced reliability and validity and can be used in research and to inform clinical care to measure satisfaction with hair from the patient perspective.
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BACKGROUND: The test-retest (TRT) reliability of FACE-Q Aesthetic scales is yet to be assessed. The aim of this study was to establish the TRT reliability of 17 FACE-Q Aesthetic scales and determine the smallest detectable change (SDC) that can be identified using these scales. METHODS: Data were collected from an online international sample platform (Prolific). Participants ≥20 years old, who had been to a dermatologist or plastic surgeon for a facial aesthetic treatment within the past 12 months were asked to provide demographic and clinical information and complete an online REDcap survey consisting of 17 FACE-Q Aesthetic scales. Participants were asked if they would be willing to complete the survey again in 7 days. Only the participants who reported no important change in the scale construct and completed the retest within 14 days were included. RESULTS: A total of 342 unique participants completed the TRT survey. The mean age of the sample was 36.6 (±11.5) years, and 82.4% were female. With outlier data removed, all FACE-Q scales demonstrated an intraclass correlation coefficient >0.70 indicating "good" TRT reliability. The standard error of measurement for the included scales ranged from 3.37 to 11.87, corresponding to a range of SDCgroup from 0.95 to 3.23 and SDCind from 9.34 to 32.91. CONCLUSION: All included FACE-Q scales demonstrated sufficient TRT reliability and stability overall after the outlier data were removed. Moreover, the authors calculated the values for the SDC for these scales.
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Estética , Face , Humanos , Feminino , Masculino , Reprodutibilidade dos Testes , Adulto , Inquéritos e Questionários , Pessoa de Meia-Idade , Satisfação do Paciente/estatística & dados numéricos , Adulto JovemRESUMO
Objective: Determine the validity and reliability of the LIMB-Q scales, Function, and Symptoms in patients with chronic lower extremity wounds. Approach: Cognitive debriefing interviews with people with current or previous wounds were conducted to examine content validity. Scales were field-tested in an international sample of people with chronic lower extremity wounds sourced from an online platform (i.e., Prolific). Psychometric properties were examined using the Rasch Measurement Theory analysis. A test-retest reproducibility study was performed, and construct validity was examined. Results: Content validity was established after 10 cognitive interviews. A total of 233 people with lower extremity wounds (age 19-80 years, mean 39.3) participated in the field test. All 25 items tested demonstrated good fit to the Rasch model with ordered thresholds. One item had a fit residual outside ±2.5, but no items had significant χ2 values after Bonferroni adjustment. Reliability was high with the person separation index, Cronbach alpha, and intraclass correlation coefficient values >0.8. Strong correlations were found between the Function and Symptoms scales and EQ-5D dimensions measuring similar constructs as well as the EQ-5D global score. All hypotheses for construct validity were confirmed. Innovation: Patient-reported outcome measures are an important component of patient-centered care, as they capture the patient's perspective in a rigorous and reproducible way. Adding these two scales to the WOUND-Q provides a means to measure function and symptoms associated with lower extremity wounds. Conclusion: These new WOUND-Q scales can be used to measure outcomes important to patients with lower extremity wounds in clinical settings and research studies.
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Background: The Satisfaction with Face Overall and Psychological Function scales are the most frequently used FACE-Q Aesthetics module scales. This study aimed to extend their range of measurement by adding and testing new concepts. We aimed to create FACE-Q Aesthetics item libraries. Methods: In-depth concept elicitation interviews were conducted. Concepts were formed into items and refined through multiple rounds of patient and expert input. The items were tested with people living in the United States, Canada, and the United Kingdom who had minimally invasive facial aesthetic treatments. Participants were recruited through an online platform (ie, Prolific). Psychometric properties were examined using Rasch measurement theory analysis, test-retest reliability, and construct validity. Results: We conducted 26 interviews. New concepts were developed into items and refined with input from 12 experts, 11 clinic patients, and 184 Prolific participants. A sample of 1369 Prolific participants completed 52 appearance and 22 psychological items. After removing 10 and 2 items respectively, the psychometric tests provided evidence of reliability with the person separation index, Cronbach alpha, and test-retest reliability values without extremes of 0.88 or more. For validity, lower scores were associated with looking older than one's age, being more bothered by facial skin laxity, treatment wearing off, and having deeper lines on Merz Assessment scales. Short-form scales formed from the 42 appearance items provide examples of item library application. Conclusions: This study provides an innovative means to customize scales to measure appearance and psychological function that maximizes content validity and minimizes respondent burden in the context of minimally invasive treatments.
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The WOUND-Q is a modular patient-reported outcome measure (PROM) with 13 scales measuring constructs across 4 domains (i.e., wound characteristics, health related quality of life, experience of care and wound treatment). The psychometrics of the WOUND-Q were previously assessed and the 13 scales evidenced good validity and reliability. However, the responsiveness (i.e., ability to detect clinical change) of the WOUND-Q has yet to be assessed. The objective of this study was to evaluate responsiveness for 9 WOUND-Q scales that assess outcomes, in a sample of people 18 years of age or older with chronic wounds that were present for at least 3 months. This study conducted a 4 month follow-up of 421 participants who completed the WOUND-Q as part of a previous psychometric study. Participants completed an online survey answering questions about their current wound state (e.g., number, type, size, smell, drainage), anchor questions about change, as well as the WOUND-Q scales that they had completed in their initial assessment. Pre-defined hypotheses were tested with a 75% acceptance threshold indicating sufficient evidence of responsiveness. Minimally important differences (MIDs) were also calculated using both anchor-based and distribution-based methods. Of 390 invited participants, 320 provided responses, ranging in age from 19 to 84 years. Acceptance of hypotheses ranged from 60% to 100%, with only the Symptom scale not meeting the 75% threshold. The findings of this study provide evidence that the WOUND-Q can validly measure clinical change in patients with chronic wounds.
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Medidas de Resultados Relatados pelo Paciente , Psicometria , Qualidade de Vida , Cicatrização , Ferimentos e Lesões , Humanos , Psicometria/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Idoso , Ferimentos e Lesões/psicologia , Adulto , Doença Crônica , Inquéritos e Questionários , Idoso de 80 Anos ou maisRESUMO
INTRODUCTION: The EAR-Q is a rigorously validated patient-reported outcome measure, which evaluates ear appearance and health-related quality of life (HRQL) in patients with congenital or acquired ear conditions. The aim of this study was to conduct an exploratory analysis to examine the factors associated with EAR-Q appearance and HRQL scale scores. METHODS: In this study, 862 participants, aged 8-29â¯years, with congenital or acquired ear conditions, completed the EAR-Q as part of an international field-test study. Patients responded to demographic and clinical questions as well as the EAR-Q. Univariable and multivariable linear regression analyses were used to determine factors that were significant predictors for the scores on the EAR-Q Appearance, Psychological, and Social scales. RESULTS: Most participants were men (57.4%), awaiting treatment (55.0%), and had a microtia diagnosis (70.4%), with a mean age of 13 (±4) years. Worse ear appearance scores (pâ¯<â¯0.02) were associated with male gender, microtia, no history of treatment, ear surgery within 6â¯months, unilateral involvement, and greater self-reported ear asymmetry. Decreased psychological scores (pâ¯<â¯0.01) were associated with increasing participant age, no treatment history, recent ear surgery, and dissatisfaction with ears matching or overall dissatisfaction. Lower social scores (pâ¯≤â¯0.04) were associated with no treatment history, those awaiting surgery, ear surgery within the last 6â¯months, bilateral involvement, and self-reported ears matching or overall appearance. CONCLUSION: This analysis identified patient factors that may influence ear appearance and HRQL scale scores. These findings provide evidence of patient factors that should be adjusted for when undertaking future observational research designs using the EAR-Q in this patient population.
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Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Masculino , Feminino , Adolescente , Estudos Transversais , Criança , Adulto , Adulto Jovem , Deformidades Adquiridas da Orelha/cirurgia , Deformidades Adquiridas da Orelha/psicologia , Microtia Congênita/cirurgia , Microtia Congênita/psicologiaRESUMO
Background: As the aesthetics field continues to innovate, it is important that outcomes are carefully evaluated. Objectives: To develop item libraries to measure how skin looks and feels from the patient perspective, that is, SKIN-Q. Methods: Concept elicitation interviews were conducted and data were used to draft the SKIN-Q, which was refined with patient and expert feedback. An online sample (i.e., Prolific) provided field-test data. Results: We conducted 26 qualitative interviews (88% women; 65% ≥ 40 years of age). A draft of the SKIN-Q item libraries were formed and revised with input from 12 experts, 11 patients, and 174 online participants who provided 180 survey responses. The psychometric sample of 657 participants (82% women; 36% aged ≥40 years) provided 713 completed surveys (facial, n = 595; body, n = 118). After removing 14 items, the psychometric analysis provided evidence of reliability (≥0.85) and validity for a 20-item set that measures how skin feels and a 46-item set that measures how skin looks. Short-form scales were tested to provide examples for how to utilize the item sets. Conclusion: The SKIN-Q represents an innovative way to measure satisfaction with skin (face and body) in the context of minimally invasive treatments.
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Medidas de Resultados Relatados pelo Paciente , Psicometria , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Masculino , Reprodutibilidade dos Testes , Procedimentos Cirúrgicos Minimamente Invasivos/métodos , Estética , Idoso , Técnicas Cosméticas/psicologia , Face , Satisfação do Paciente , Inquéritos e Questionários , Entrevistas como AssuntoRESUMO
BACKGROUND: The concept of "natural" after a facial aesthetic treatment represents an understudied area. We added scales to FACE-Q Aesthetics to provide a means to measure this concept from the patient's perspective. OBJECTIVES: The objective of this study was to develop and validate the FACE-Q Aesthetic Natural module. METHODS: Concept elicitation interviews with people having minimally invasive treatments were conducted to explore the natural concept and develop scales. Patient and expert input refined scale content. An online sample (ie, Prolific) of people who had a facial aesthetic treatment was analyzed with Rasch measurement theory to examine psychometric properties. A test-retest reliability study was performed, and construct validity was examined. RESULTS: Interviews with 26 people were conducted. Three scales were developed and refined with input from 12 experts, 11 patients, and 184 online survey participants. Data from 1358 online participants provided evidence of scale reliability and validity. Reliability was high with person separation index, Cronbach alpha, and intraclass correlation coefficient values without extremes ≥0.82. Tests of construct validity confirmed that the scales functioned as hypothesized. Higher scores on the Expectations scale were associated with how important it was to have a natural look and movement after treatment. In addition, higher scores on the Natural Appearance and Natural Outcome scales correlated with better scores on other FACE-Q Aesthetics scales, and were associated with the face looking and feeling natural and with overall satisfaction with facial appearance. CONCLUSIONS: Many people seeking facial aesthetic treatments want to look natural after treatment. These new FACE-Q Aesthetics scales provide a means to measure the concept of natural from the patient's perspective.