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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. [ABSTRACT FROM AUTHOR]

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. Level of Evidence: 3 [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: Cancer and its treatment can impair fertility in men. It is recommended that they be referred for fertility consultation before the start of treatment. This study examined factors associated with men attending a fertility consultation within 30 days of diagnosis. Methods: Males 15 to 39 years of age, diagnosed with cancer in Ontario, Canada, between 2006 and 2019, were identified from the Ontario Cancer Registry. Linked administrative data were used to obtain other clinical and sociodemographic variables. The main outcome was a fertility consultation within 30 days of diagnosis, defined using Ontario Health Insurance Plan billing codes (606 or 628). A backward selection multivariate logistic regression was performed. Results: Of 13,720 cases identified, 8.5% attended a fertility consultation within 30 days of diagnosis. A more recent year of diagnosis (odds ratio [OR] = 5.5; 95% confidence interval [CI] 4.6–6.6), living in an urban area (OR = 1.3; 95% CI 1.0–1.8), receiving radiation therapy (OR = 1.4; 95% CI 1.2–1.6), chemotherapy (OR = 1.9; 95% CI 1.6–2.2), and reproductive organ-related cancer surgery (OR = 1.5; 95% CI 1.2–1.7) were associated with a greater likelihood of attending a consultation. Older age (OR = 0.2; 95% CI 0.1–0.2), living in a northern region (OR = 0.3; 95% CI 0.2–0.5), having a cancer with low (OR = 0.3; 95% CI 0.2–0.4) or moderate risk to fertility (OR = 0.6; 95% CI 0.5–0.7), and residing in a neighborhood with lower income (OR = 0.4; 95% CI 0.3–0.5) or residential instability quintile (OR = 0.8; 95% CI 0.6–1.0) were associated with being less likely to attend a consultation. Conclusion: Although rates of fertility consultation have increased over time, these remain low in various clinical and demographic groups. Funding for fertility preservation appears to have had an important impact on fertility consultation in young men with cancer. [ABSTRACT FROM AUTHOR]

Objective: CLEFT-Q is a condition-specific patient-reported outcome measure (PROM) for patients with cleft lip and/or palate (CL/P). The aim of this study was to examine the cross-sectional construct validity of the CLEFT-Q scales. Design: Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs. Setting: Seven cleft centres in Canada, the USA, and UK were involved. Patients/Participants: Patients were aged eight to 29 years with CL/P. Interventions: Before undergoing rhinoplasty, orthognathic, cleft lip scar revision, and alveolar bone graft, participants were asked to complete the following PROMs: CLEFT-Q (9 scales), Child Oral Health Impact Profile (socio-emotional subscale) and Cleft Hearing Appearance and Speech Questionnaire (features 1 subscale). Main Outcome Measure(s): The correlation coefficients examining the relationship between the scales were the main outcome measures. Correlations (Spearman) were calculated and interpreted as follows: <0.3 weak, 0.30 to 0.50 moderate, ≥0.50 strong. Results: Participants (n = 177) were mostly male (61%) and aged between eight and 11 years (42%). Overall, 38 of 52 (73%) hypotheses tested were supported. More specifically, 20 of 26 (77%) hypotheses about correlations between the appearance scales were supported, two of three (67%) hypotheses about correlations between the health-related quality of life scales were supported, and 16 of 23 (70%) hypotheses about correlations between the appearance and health-related quality of life scales were supported. Conclusions: Cross-sectional construct validity of the CLEFT-Q scales adds further evidence of the psychometric properties of this instrument. [ABSTRACT FROM AUTHOR]

Introduction: Adverse events (AE) of treatment are prevalent and diverse in head and neck rhabdomyosarcoma (HNRMS) survivors. These AEs are often reported by physicians; however, patients' perceptions of specific AE are not well known. In this study, we explored patient‐reported outcomes measuring appearance, health‐related quality of life (HRQOL), and facial function in HNRMS survivors. Second, we assess the relationship between physician grading of AE and patient reporting. Materials and Methods: Survivors of pediatric HNRMS, diagnosed between 1993 and 2017, who were at least 2 years after completing treatment were invited to an outpatient clinic as part of a multicenter cross‐sectional cohort study. At the outpatient clinics, survivors aged ≥8 years filled out the FACE‐Q Craniofacial module; a patient‐reported outcome instrument measuring issues specific to patients with facial differences. AE were systematically assessed by a multidisciplinary team based on the Common Terminology Criteria of Adverse Events system. Results: Seventy‐seven survivors with a median age of 16 years (range 8–43) and median follow‐up of 10 years (range 2–42) completed the questionnaire and were screened for AEs. Patient‐reported outcomes varied widely between survivors. Many survivors reported negative consequences: 82% on appearance items, 81% on HRQOL items, and 38% on facial function items. There was a weak correlation between physician‐scored AEs and the majority of patient‐reported outcomes specific for those AEs. Conclusions: Physician‐graded AEs are not sufficient to provide tailored care for HNMRS survivors. Findings from this study highlight the importance of incorporating patient‐reported outcome measures in survivorship follow‐up. Physician graded adverse effects are not sufficient to provide tailored care for head and neck cancer survivors. Patient reported outcome scores for appearance, health related quality of life and facial function was reported negatively by many survivors. This study highlights the importance of incorporating patient reported outcome measures in follow‐up clinic. [ABSTRACT FROM AUTHOR]