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1.
Wound Repair Regen ; 2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38656503

RESUMEN

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.

2.
J Plast Reconstr Aesthet Surg ; 93: 62-69, 2024 Apr 10.
Artículo en Inglés | MEDLINE | ID: mdl-38663166

RESUMEN

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 8-29 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 (p < 0.02) were associated with male gender, microtia, no history of treatment, ear surgery within 6 months, unilateral involvement, and greater self-reported ear asymmetry. Decreased psychological scores (p < 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 (p ≤ 0.04) were associated with no treatment history, those awaiting surgery, ear surgery within the last 6 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.

3.
Plast Reconstr Surg Glob Open ; 12(4): e5736, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38600967

RESUMEN

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.

4.
Animals (Basel) ; 14(6)2024 Mar 21.
Artículo en Inglés | MEDLINE | ID: mdl-38540081

RESUMEN

This longitudinal case study provides an in-detail report of the process towards the elimination of Mycobacterium avium subsp. paratuberculosis (MAP) from a closed 450-head commercial dairy herd. In parallel, two diagnostic approaches were applied to all cows in annual intervals during 2012-2022: detection of MAP in individual faecal samples by bacteriological cultivation on solid medium and detection of MAP-specific antibodies by ELISA. For each annual sampling, the kappa coefficients for test agreement and the survival rates of MAP-positive and MAP-negative cows were calculated. Applying a multivariable linear regression model revealed a significantly lower fat-corrected 305-day milk yield for MAP-positive cows. The true prevalence of MAP shedders reduced from 24.2% in 2012 to 0.4% in 2019 and during 2020-2022, no MAP shedder was identified. Test agreement was generally low and bacteriological cultivation showed positive results earlier than the ELISA. In the first years of control, the survival of MAP shedders was longer than in the final stage. In conclusion, the elimination of MAP from a dairy herd might be feasible within a decade. Changes in the test agreement must be considered. Timely removal of MAP shedders, hygienic calf rearing, and colostrum supply are key for successful control.

5.
Headache ; 64(4): 410-423, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38525832

RESUMEN

OBJECTIVE: To assess the readability and the comprehensiveness of patient-reported outcome measures (PROMs) utilized in primary headache disorders literature. BACKGROUND: As the health-care landscape has evolved toward a patient-centric model, numerous PROMs have been developed to capture treatment outcomes in patients with headache disorders. For these PROMs to advance our understanding of headache disorders and their treatment impact, they must be easy to understand (i.e., reading grade level 6 or less) and comprehensively capture what matters to patients with headache. The aim of this study was to (a) assess the readability of PROMs utilized in headache disorders literature, and (b) assess the comprehensiveness of PROMs by mapping their content to a health-related quality of life framework. METHODS: In this scoping review, recently published systematic reviews were used to identify PROMs used in primary headache disorders literature. Readability analysis was performed at the level of individual items and full PROM using established readability metrics. The content of the PROMs was mapped against a health-related quality-of-life framework by two independent reviewers. RESULTS: In total, 22 PROMs (15 headache disorders related, 7 generic) were included. The median reading grade level varied between 7.1 (interquartile range [IQR] 6.3-7.8) and 12.7 (IQR 11.8-13.2). None of the PROMs were below the recommended reading grade level for patient-facing material (grade 6). Three PROMs, the Migraine-Treatment Assessment Questionnaire, the Eurolight, and the European Quality of Life 5 Dimensions 3 Level Version, were between reading grade levels 7 and 8; the remaining 19 PROMs were above reading grade level 8. In total, the PROMs included 425 items. Most items (n = 134, 32%) assessed physical function (e.g., work, activities of daily living). The remaining items assessed physical symptoms (n = 127, 30%; e.g., pain, nausea), treatment effects on symptoms (n = 65, 15%; e.g., accompanying symptoms relief, headache relief), treatment impact (n = 56, 13%; e.g., function, side effects), psychological well-being (n = 41, 10%; e.g., anger, frustration), social well-being (n = 29, 7%; e.g., missing out on social activities, relationships), psychological impact (n = 14, 3%; e.g., feeling [not] in control, feeling like a burden), and sexual well-being (n = 3, 1%; e.g., sexual activity, sexual interest). Some of the items pertained to treatment (n = 27, 6%), of which most were about treatment type and use (n = 12, 3%; e.g., medication, botulinum toxin), treatment access (n = 10, 2%; e.g., health-care utilization, cost of medication), and treatment experience (n = 9, 2%; e.g., treatment satisfaction, confidence in treatment). CONCLUSION: The PROMs used in studies of headache disorders may be challenging for some patients to understand, leading to inaccurate or missing data. Furthermore, no available PROM comprehensively measures the health-related quality-of-life impact of headache disorders or their treatment, resulting in a limited understanding of patient-reported outcomes. The development of an easy-to-understand, comprehensive, and validated headache disorders-specific PROM is warranted.


Asunto(s)
Comprensión , Trastornos de Cefalalgia , Medición de Resultados Informados por el Paciente , Calidad de Vida , Humanos , Trastornos de Cefalalgia/terapia , Trastornos de Cefalalgia/diagnóstico
6.
Artículo en Inglés | MEDLINE | ID: mdl-38466952

RESUMEN

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.

7.
Ann Surg ; 2024 Feb 20.
Artículo en Inglés | MEDLINE | ID: mdl-38375665

RESUMEN

OBJECTIVE: To examine health-related quality of life (HRQL) and satisfaction with appearance in patients who have undergone bariatric surgery (BS) with or without subsequent body contouring surgery (BCS) in relation to the general population normative for the BODY-Q. BACKGROUND: The long-term impact of BS with or without BCS has not been established using rigorously developed and validated patient-reported outcome measures (PROM). The BODY-Q is a PROM developed to measure changes in HRQL and satisfaction with appearance in patients with BS and BCS. METHODS: Prospective BODY-Q data were collected from six European countries (Denmark, Netherlands, Finland, Germany, Italy, and Poland) from June 2015 to February 2022 in a cohort of patients who underwent BS. Mixed effects regression models were used to analyze changes in HRQL and appearance over time between patients who did and did not receive BCS and to examine the impact of patient-level covariates on outcomes. RESULTS: This study included 24,604 assessments from 5,620 patients. BS initially led to improved HRQL and appearance scores throughout the first post-bariatric year, followed by a gradual decrease. Patients who underwent subsequent BCS after BS experienced a sustained improvement in HRQL and appearance or remained relatively stable for up to 10-years postoperatively. CONCLUSION: Patients who underwent BCS maintained the improvement in HRQL and satisfaction with appearance in contrast to patients who only underwent BS, who reported a decline in scores 1-2 years postoperatively. Our results emphasize the pivotal role that BCS plays in the completion of the weight loss trajectory.

8.
Artículo en Alemán | MEDLINE | ID: mdl-38412947

RESUMEN

OBJECTIVE: In Germany, only few data on the current distribution of paratuberculosis in sheep and goat flocks is available. The present study provides an overview of the distribution of Mycobacterium avium ssp. paratuberculosis (MAP) in 165 Thuringian sheep and goat flocks. Also, the study investigated the association between the MAP status of the flock and herd specific factors as well as the association between the individual measured value of ELISA and animal specific factors like age, body condition, sex, and animal species. MATERIAL AND METHODS: To investigate the prevalence of MAP, serum samples from 2550 sheep and 1171 goats from 165 flocks (flock size 2 to 2879 animals) were serologically examined for MAP antibodies in 2021. Additionally, 1 to 6 environmental faecal samples were collected from every flock depending on the flock size. They were examined for the presence of MAP by using both bacteriological cultivation and a commercially available real-time-PCR. RESULTS: MAP antibodies were detected in 41 sheep (1.6%) and 29 goats (2.5%), which accounts to a detection of MAP antibodies in 20.6% of the 165 flocks (on herd level). The symptoms of paratuberculosis, weight loss with preserved appetite and altered fecal consistency, were observed in only four of the flocks. A positive association was identified between the detection of MAP or MAP-specific antibodies in a flock and flock size, as well as positive association between the measured value in the Elisa (s/p ratio) and the age of the animal. Furthermore, an association between an increasing s/p ratio of the ELISA and a decreasing body condition was found. CONCLUSION AND CLINICAL RELEVANCE: Given what is known about the distribution of paratuberculosis in small ruminants, this disease should always be considered as a possible cause of weight loss and diarrhea. In case of high within-herd prevalence herd-specific control measures should be considered. In serological herd monitoring, animals with poor body condition should preferably be included in the sample, as the probability of being able to identify MAP positive animals is higher here.


Asunto(s)
Enfermedades de las Cabras , Mycobacterium avium subsp. paratuberculosis , Paratuberculosis , Enfermedades de las Ovejas , Ovinos , Animales , Paratuberculosis/epidemiología , Paratuberculosis/diagnóstico , Cabras , Prevalencia , Enfermedades de las Ovejas/epidemiología , Enfermedades de las Ovejas/diagnóstico , Enfermedades de las Cabras/epidemiología , Ensayo de Inmunoadsorción Enzimática/veterinaria , Anticuerpos Antibacterianos , Pérdida de Peso
9.
Aesthet Surg J ; 2024 Jan 05.
Artículo en Inglés | MEDLINE | ID: mdl-38180487

RESUMEN

BACKGROUND: The concept of natural after a facial aesthetic treatment represents an under-studied area. We added scales to FACE-Q Aesthetics to provide a means to measure this concept from the patient's perspective. OBJECTIVES: To develop and validate FACE-Q natural scales. METHODS: Concept elicitation interviews with people having minimally invasive treatments were conducted to explore the natural concept and develop scales. Patient and expert input was used to refine scale content. An online sample (i.e., Prolific) of people who had a facial aesthetic treatment to examine psychometric properties using Rasch Measurement Theory analysis. A test-retest reliability study was performed, and construct validity 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 coefficients 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 wanting a more 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. CONCLUSIONS: Many people seeking facial aesthetic treatments want to look natural. These new FACE-Q Aesthetics scales provide a means to measure the concept of 'natural' from the patient's perspective.

10.
Plast Reconstr Surg ; 2024 Jan 15.
Artículo en Inglés | MEDLINE | ID: mdl-38232226

RESUMEN

BACKGROUND: The LIMB-Q is a novel patient-reported outcome measure for lower extremity trauma patients. The aim of this study was to perform a psychometric validation of the LIMB-Q based on the Rasch Measurement Theory. METHODS: An international, multi-site convenience sample of patients with lower extremity traumatic injuries distal to the mid-femur were recruited via clinical sites (United States, Netherlands) and online platforms (English; Trauma Survivors Network, Prolific). A cross-sectional survey of the LIMB-Q was conducted with test-rest (TRT) measured 1-2 weeks after initial completion in a sub-group of patients. RESULTS: The LIMB-Q was field-tested in 713 patients. The mean age was 41 years (standard deviation (SD) 17, range 18-85), mean time from injury was 7 years (SD 9, range 0-58), and there were variable injury and treatment characteristics (39% fracture surgery only, 38% flap or graft, 13% amputation, 10% amputation and flap/graft). Out of 382 items tested, 164 were retained across 16 scales. Reliability was demonstrated with person separation index values 0.80 and greater in 14 scales (0.78-0.79 in remaining 2 scales), Cronbach alpha values 0.83 and greater, and intraclass correlation coefficient values 0.70 and greater. Each scale was unidimensional, measurement invariance was confirmed across clinical and demographic factors, TRT showed adequate reliability, and construct validity was demonstrated. CONCLUSIONS: The LIMB-Q is a patient reported outcome measure with 16 independently functioning scales (6-15 items per scale) developed and validated specifically for lower extremity trauma patients with fractures, reconstruction, and/or amputation.

11.
J Wound Care ; 33(1): 28-38, 2024 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-38197277

RESUMEN

OBJECTIVE: The impact of hard-to-heal wounds extends beyond traditional clinical metrics, negatively affecting a patient's health-related quality of life (HRQoL). Yet treatment outcomes are seldom measured from the patient's perspective. The purpose of the present study was to perform in-depth qualitative interviews with patients diagnosed with varying types of hard-to-heal wounds to identify outcomes important to them. METHOD: Participants were recruited from wound care clinics in Canada, Denmark, the Netherlands and the US, and were included if they had a hard-to-heal wound (i.e., lasting ≥3 months), were aged ≥18 years, and fluent in English, Dutch or Danish. Qualitative interviews took place between January 2016 and March 2017. An interpretive description qualitative approach guided the data analysis. Interviews were audio-recorded, transcribed and coded line-by-line. Codes were categorised into top-level domains and themes that formed the final conceptual framework. RESULTS: We performed 60 in-depth interviews with patients with a range of wound types in different anatomic locations that had lasted from three months to 25 years. Participants described outcomes that related to three top-level domains and 13 major themes: wound (characteristics, healing); HRQoL (physical, psychological, social); and treatment (cleaning, compression stocking, debridement, dressing, hyperbaric oxygen, medication, suction device, surgery). CONCLUSION: The conceptual framework developed as part of this study represents the outcome domains that mattered the most to the patients with hard-to-heal wounds. Interview quotes were used to generate items that formed the WOUND-Q scales, a patient-reported outcome measure for patients with hard-to-heal wounds.


Asunto(s)
Análisis de Datos , Calidad de Vida , Humanos , Adolescente , Adulto , Canadá , Etnicidad , Medias de Compresión
12.
Plast Reconstr Surg ; 153(1): 120e-129e, 2024 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-37054385

RESUMEN

BACKGROUND: The CLEFT-Q, a questionnaire developed and validated specifically for cleft patients, contains seven appearance scales. The International Consortium of Health Outcomes Measurement (ICHOM) has incorporated only some CLEFT-Q appearance scales in the Standard Set to minimize burden. This study evaluates which appearance scales provide the most meaningful information in the different cleft types at specific ages, for the most efficient cleft appearance outcome assessment. METHODS: Within this international multicenter study, outcomes of the seven appearance scales were collected, either as part of the ICHOM Standard Set, or as part of the field test study performed to validate the CLEFT-Q. Analyses were performed in separate age groups and cleft types, and involved univariate regression analyses, trend analyses, t tests, correlations, and floor and ceiling effects. RESULTS: A total of 3116 patients were included. Scores for most appearance scales showed a downward trend by age group, with the exception of the Teeth and Jaw scales. In all cleft types, several scales correlated strongly with each other. No floor effects were observed, but ceiling effects were found in several scales in different age groups, most often in the CLEFT-Q Jaw scale. CONCLUSIONS: A proposition for the most meaningful and efficient appearance outcome assessment in cleft patients is made. It was composed so that recommendations are of value for different cleft protocols and initiatives. Suggestions for the use of scales in the ICHOM Standard Set at different ages are given, and also from a clinical perspective. Use of the CLEFT-Q Scar, Lips, and Nose scales will provide additional relevant information.


Asunto(s)
Labio Leporino , Fisura del Paladar , Humanos , Fisura del Paladar/cirugía , Labio Leporino/cirugía , Medición de Resultados Informados por el Paciente , Labio , Evaluación de Resultado en la Atención de Salud , Calidad de Vida
13.
Int Wound J ; 21(1): e14354, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37581232

RESUMEN

WOUND-Q is a condition-specific patient-reported outcome measure developed for all types of chronic wounds, located anywhere on the body. To establish reliability and validity of a patient-reported outcome measure, multiple pieces of evidence are required. The purpose of this study was to examine the measurement properties of 9 of the 13 WOUND-Q scales and perform a test-retest reproducibility study in an international sample. In August 2022, we invited members of an international online community (Prolific.com) with any type of chronic wound to complete a survey containing the WOUND-Q scales, the Wound-QoL and EQ-5D. A test-retest survey was performed 7 days after the first survey. It was possible to examine the reliability and validity of eight of the nine WOUND-Q scales by Rasch Measurement Theory (RMT). To examine test-retest reproducibility intraclass correlation coefficients (ICCs), the standard error of the measurement and the smallest detectable change were calculated. In total, 421 patients from 22 different countries with 11 different types of chronic wounds took part in this study. Our analyses provided further evidence of the reliability and validity of the scales measuring wound characteristics (assessment, drainage, smell), health-related quality of life (life impact, psychological, sleep, social) and wound treatment (dressing).


Asunto(s)
Medición de Resultados Informados por el Paciente , Calidad de Vida , Humanos , Reproducibilidad de los Resultados , Psicometría , Encuestas y Cuestionarios
14.
BMJ Open ; 13(12): e071571, 2023 12 28.
Artículo en Inglés | MEDLINE | ID: mdl-38154881

RESUMEN

OBJECTIVES: Speech problems in patients with a cleft palate are often complex and multifactorial. Finding the optimal way of monitoring these problems is challenging. The International Consortium of Health Outcomes Measurement (ICHOM) has developed a set of standardised outcome measures at specific ages for patients with a cleft lip and/or palate, including measures of speech assessment. This study evaluates the type and timing of speech outcome measures currently included in this ICHOM Standard Set. Additionally, speech assessments in other cleft protocols and initiatives are discussed. DESIGN, SETTING AND PARTICIPANTS: An international, multicentre study was set up including centres from the USA and the Netherlands. Outcomes of clinical measures and Patient Reported Outcome Measures (PROMs) were collected retrospectively according to the ICHOM set. PROM data from a field test of the CLEFT-Q, a questionnaire developed and validated for patients with a cleft, were collected, including participants from countries with all sorts of income statuses, to examine the value of additional moments of measurement that are used in other cleft initiatives.Data from 2500 patients were included. Measured outcomes contained univariate regression analyses, trend analyses, t-tests, correlations and floor and ceiling effects. RESULTS: PROMs correlated low to moderate with clinical outcome measures. Clinical outcome measures correlated low to moderate with each other too. In contrast, two CLEFT-Q Scales correlated strongly with each other. All PROMs and the Percent Consonants Correct (PCC) showed an effect of age. In patients with an isolated cleft palate, a ceiling effect was found in the Intelligibility in Context Scale. CONCLUSION: Recommendations for an optimal speech outcome assessment in cleft patients are made. Measurement moments of different cleft protocols and initiatives are considered in this proposition. Concerning the type of measures, adjustment of the current PCC score outcome seems appropriate. For centres with adequate resources and specific interest in research, translation and validation of an upcoming tool, the Cleft Audit Protocol for Speech Augmented, is recommended.


Asunto(s)
Labio Leporino , Fisura del Paladar , Humanos , Fisura del Paladar/complicaciones , Labio Leporino/complicaciones , Habla , Estudios Retrospectivos , Trastornos del Habla/diagnóstico , Trastornos del Habla/etiología
15.
Clin Cosmet Investig Dermatol ; 16: 3091-3105, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37915422

RESUMEN

Background: Patient-reported outcome measures (PROMs) are needed to measure outcomes that matter to people with nail conditions, from their perspective. Objective: To design a comprehensive new PROM (NAIL-Q) to measure outcomes important in toenail and fingernail conditions. Methods: A mixed methods iterative approach was used. Phase 1 involved concept elicitation interviews that were audio-recorded, transcribed, and coded line-by-line. Concepts were developed into scales and refined through cognitive debriefing interviews with patients and expert input. Data was then collected from an international sample using a crowdsource platform. Eligible participants were aged ≥18 years with a nail condition for at least 3 months. Rasch Measurement Theory (RMT) analysis was used to examine item and scale performance. Other psychometric tests included test-retest reliability, and convergent and construct validity. Results: Phase 1 interviews involved 23 patients with 10 nail conditions and input from 11 dermatologists. The analysis led to the development of 84 items for field-testing. In Phase 2, 555 participants completed the survey. Toenail conditions (n = 441) were more common than fingernail conditions (n = 186). The RMT analysis reduced the number of items tested to 45 in 7 scales measuring nail appearance, health-related quality of life concerns, and treatment outcomes. All items had ordered thresholds and nonsignificant chi-square p values. Reliability statistics with and without extremes for the Person Separation Index were ≥0.79 and Cronbach's alpha were ≥0.83, and for intraclass correlation coefficients were ≥0.81. Construct validity was further supported in that most participants agreed that the NAIL-Q was easy to understand, asked relevant and important questions in a respectful way, and that it should be used to inform clinical care. Conclusion: The NAIL-Q is a rigorously designed and tested PROM that measures nail appearance, health-related quality of life and treatment outcomes. This PROM can be used in clinical practice to inform patient care and to include the patient perspective in research.

16.
Artículo en Inglés | MEDLINE | ID: mdl-37943603

RESUMEN

Background: The FACE-Q Craniofacial module includes a scale that measures how bothered an individual is by the appearance of a birthmark on the face or body. Objective: To determine if the Birthmark scale measuring appearance of the birthmark has evidence of construct validity among children and young adults, aged 8-29 years old, with a birthmark on the face or body. Methods: Participants were recruited as part of the field test of the FACE-Q Craniofacial module. Construct validity of the Birthmark scale was examined using a priori hypotheses testing. Results: Two hundred seventy participants were included, who were predominantly female (60.4%) and had a facial birthmark (71.5%). The Birthmark scale correlated (p ≤ 0.01) with scale scores for Face, Appearance Distress, Psychological, School, and Social. Scores for participants with more "noticeable" birthmarks were (p ≤ 0.01) associated with worse Birthmark scale scores. Conclusion: The findings support that the Birthmark scale can be used to measure the patient's perspective of the appearance of their birthmark, providing a means for clinicians to incorporate the patient's view in shared decision-making and research.

17.
Plast Reconstr Surg Glob Open ; 11(11): e5401, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-38025628

RESUMEN

Background: BODY-Q is a rigorously developed patient-reported outcome measure designed to measure outcomes of weight loss and body contouring patients. To allow interpretation and comparison of BODY-Q scores across studies, normative BODY-Q values were generated from the general population. The aim of this study was to examine the psychometric properties of BODY-Q in the normative population. Methods: Data were collected using two crowdsourcing platforms (Prolific and Amazon Mechanical Turk) in 12 European and North American countries. Rasch measurement theory (RMT) was used to examine reliability and validity of BODY-Q scales. Results: RMT analysis supported the psychometric properties of BODY-Q in the normative sample with ordered thresholds in all items and nonsignificant chi-square values for 167 of 176 items. Reliability was high with person separation index of greater than or equal to 0.70 in 20 of 22 scales and Cronbach alpha values of greater than or equal to 0.90 in 17 of 22 scales. Mean scale scores measuring appearance, health-related quality of life, and eating-related concerns scales varied as predicted across subgroups with higher scores reported by participants who were more satisfied with their weight. Analysis to explore differential item functioning by sample (normative versus field-test) flagged some potential issues, but subsequent comparison of adjusted and unadjusted person estimates provided evidence that the scoring algorithm worked equivalently for the normative sample as in the field-test samples. Conclusions: The BODY-Q scales showed acceptable reliability and validity in the normative sample. The normative values can be used as reference in research and clinical practice in combination with local estimates for parallel analysis and comparison.

18.
Artículo en Inglés | MEDLINE | ID: mdl-37852001

RESUMEN

Purpose: We aimed to establish content validity and assess the psychometric properties of the FACE-Q Craniofacial Module, a patient-reported outcome measure, for use in pediatric and adolescent patients with head and neck cancer (HNC). Methods: To establish content validity (Part 1), between June 2017 and August 2019, cognitive interviews were conducted with survivors of pediatric HNC (n = 15), and input was obtained from clinical experts (n = 21). To examine item and scale performance (Part 2), Rasch Measurement Theory (RMT) analysis was performed using data from two international studies (n = 121). Results: Part 1: Qualitative data from 15 survivors and input from 21 experts provided evidence to support the use of the FACE-Q Craniofacial Module in pediatric HNC. Part 2: The field-test study sample included 121 survivors of pediatric HNC. RMT analysis provided evidence of reliability and validity for 10 FACE-Q scales. Data for each scale fit the RMT model. Scale reliability was high, with Person Separation Index and Cronbach's alpha values ≥0.82 for 9 scales. Mean scores on the Appearance, Psychological, and Social scales were higher for those who liked aspects of their face more. For participants with (vs. without) a facial difference, mean scores were lower for the Face, Jaws, Psychological, and Social scales. Conclusion: The FACE-Q Craniofacial Module evidenced reliability and validity for HNC survivors aged 8-29 years and can be used in research and clinical care to measure quality of life of pediatric survivors with HNC.

19.
J Telemed Telecare ; : 1357633X231205329, 2023 Oct 30.
Artículo en Inglés | MEDLINE | ID: mdl-37904516

RESUMEN

OBJECTIVES: The COVID-19 pandemic compelled a portion of healthcare to be delivered virtually. As the pandemic waned, health systems strived to find a balance between re-incorporating in-person care while maintaining virtual care. To find when virtual or in-person encounters are more appropriate, we surveyed pediatricians' perceptions when comparing the suitability of virtual care to in-person care. METHODS: We surveyed a Canadian tertiary-level pediatric hospital where pediatricians assessed whether specific clinical encounters or tasks were more or less effective virtually than when performed in person. Pediatricians also rated the importance of clinical and patient factors when deciding if a patient needs to be seen in person. RESULTS: Of 160 pediatrics faculty members, 56 (35%) responded to the survey. When assessing different types of clinical encounters, triage, multidisciplinary meetings, discharge, and follow ups were more likely to favor virtual encounters. However, first consultations and family meetings were more likely to favor in-person encounters. Regarding clinical tasks, pediatricians were more likely to endorse explaining test results, offering treatment recommendations, and obtaining patient histories virtually. On the contrary, there was a preference for physical examinations, assessing patients visually, and assessing developmental milestones to be performed in person. When deciding if a patient should be seen in person versus virtual, pediatricians rated the patient's condition and communication barriers as the most important factors favoring an in-person appointment. DISCUSSION: These results offer an initial framework for pediatricians when choosing which encounter type may be most appropriate for their patients between virtual or in-person appointments.

20.
Artículo en Alemán | MEDLINE | ID: mdl-37722598

RESUMEN

SUBJECT AND AIM: At present, only little information is available on the within-flock prevalence of Salmonella enterica subspecies diarizonae serovar 61: k: 1, 5, (7) (SASd) in sheep flocks in Germany as well as their possible influencing factors. The aim of the study was to investigate relationships between flock size, breed and within-flock prevalence. MATERIAL AND METHODS: A total of 1610 clinically healthy ewes from 14 sheep flocks of 9 different breeds aged 2 to 12 years were microbiologically tested for SASd by nasal swab and fecal samples. Linear multivariable models were used to analyse the associations between within-flock prevalence and farm factors (flock size, breed) or detection frequencies in fecal or nasal swabs. RESULTS: SASd was detected in all sheep flocks examined, with 75% of adults having at least one positive nasal or fecal result. In comparison to the 11 flocks in which commercial breeds were kept, the 3 flocks of landraces had a lower apparent within-flock prevalence (p=0.01). No association with herd size was evident. With respect to the age of the ewes, there was a negative relationship (p=0.05) with the frequency of detection of SASd in the nasal swab but not in the fecal swab. The health status and fertility performance of the flocks were in line with a normal range for commercial sheep flocks, with lambing losses of 5% to 10% and lambing scores of 130% to 158%. CONCLUSIONS: Despite the high prevalence of SASd infections particularly within commercial breeds, there was no evidence of a relevant risk to sheep health. Compared with commercial breed flocks, a lower spread of SASd within flocks keeping landraces was evident. CLINICAL RELEVANCE: Despite a high prevalence, infections with SASd are very unlikely to lead to clinical symptoms or disease. Regulation and monitoring of SASd in sheep are of low priority for animal health authorities.


Asunto(s)
Salmonelosis Animal , Salmonella enterica , Enfermedades de las Ovejas , Animales , Ovinos , Femenino , Salmonella enterica/genética , Prevalencia , Serogrupo , Enfermedades de las Ovejas/epidemiología , Salmonelosis Animal/epidemiología , Salmonelosis Animal/microbiología
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