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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.
Aesthet Surg J ; 44(7): 733-743, 2024 Jun 14.
Artículo en Inglés | MEDLINE | ID: mdl-38180487

RESUMEN

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.


Asunto(s)
Estética , Cara , Satisfacción del Paciente , Psicometría , Humanos , Femenino , Masculino , Reproducibilidad de los Resultados , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios/estadística & datos numéricos , Anciano , Adulto Joven , Técnicas Cosméticas
3.
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
4.
Value Health ; 26(2): 251-260, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36031479

RESUMEN

OBJECTIVES: Health Utilities Preschool (HuPS) was developed to fill the need for a generic preference-based measure (GPM) applicable in early childhood. A GPM has all the properties for higher-order summary measures, such as quality-adjusted life-years, required to inform important policy decisions regarding health and healthcare services. METHODS: Development was in accordance with published standards for a GPM, statistical procedures, and modeling. HuPS incorporates key components of 2 existing measurement systems: Health Status Classification System for Preschool Children and Health Utilities Index Mark 3 (HUI3). The study included a series of 4 measurement surveys: definitional, adaptational, quantificational, and evaluational health-related quality of life (HRQL). HuPS measurements were evaluated for reliability, validity, interpretability, and acceptability. RESULTS: Definitional measurements identified 8 Health Status Classification System for Preschool Children attributes in common with HUI3 (vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain and discomfort), making the HUI3 scoring equation commensurate with HuPS health states. Adaptational measurements informed the content of attribute-level descriptions (n = 35). Quantificational measurements determined level scoring coefficients. HRQL scoring inter-rater reliability (intraclass correlation coefficient = 0.79) was excellent. Continuity of HRQL scoring with HUI3 was reliable (intraclass correlation coefficient = 0.80, P < .001) and valid (mean absolute difference = 0.016, P = .396). CONCLUSIONS: HuPS is an acceptable, reliable, and valid GPM. HRQL scoring is continuous with HUI3. Continuity expands the applicability of GPM (HUI3) scoring to include subjects as young as 2 years of age. Widespread applications of HuPS would inform important health policy and management decisions as HUI3 does for older subjects.


Asunto(s)
Estado de Salud , Calidad de Vida , Preescolar , Humanos , Reproducibilidad de los Resultados , Indicadores de Salud , Escolaridad , Encuestas y Cuestionarios
5.
Cleft Palate Craniofac J ; 60(3): 327-335, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-34919453

RESUMEN

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.


Asunto(s)
Labio Leporino , Fisura del Paladar , Niño , Humanos , Masculino , Femenino , Labio Leporino/cirugía , Labio Leporino/psicología , Fisura del Paladar/cirugía , Fisura del Paladar/psicología , Estudios Prospectivos , Calidad de Vida , Psicometría , Estudios Transversales , Medición de Resultados Informados por el Paciente
6.
Psychooncology ; 30(11): 1849-1858, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34160847

RESUMEN

OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA-Needs Assessment (AYA-NA). METHODS: AYA patients (N = 288; 15-29 years, Mage  = 21.5 years, SDage  = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA-NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut-off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA-NA scores were reported. RESULTS: The DT correlated strongly with the HADS-Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut-off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty-two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA-NA item most likely to differentiate distressed AYAs. CONCLUSIONS: The DT is a valid distress screening instrument for AYAs with cancer. The AYA-POST (DT and AYA-NA) provides clinicians with a critical tool to assess the psychosocial well-being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns.


Asunto(s)
Neoplasias , Psicooncología , Adolescente , Adulto , Ansiedad/diagnóstico , Ansiedad/epidemiología , Preescolar , Humanos , Tamizaje Masivo , Neoplasias/psicología , Estrés Psicológico/psicología , Encuestas y Cuestionarios , Adulto Joven
7.
J Am Acad Dermatol ; 85(5): 1227-1239, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-32502586

RESUMEN

BACKGROUND: Onychomycosis is the most common nail disorder, often causing physical, emotional, and aesthetic consequences. The effect of both the condition itself and treatment on quality of life has not been well studied. OBJECTIVE: The objectives of this study were to systematically review the available literature describing the effect of onychomycosis and treatment on quality of life. METHODS: We performed a search of the onychomycosis literature published before April 13, 2020. Articles were included in the review if primary data were presented, patient-reported outcome measures were used, and onychomycosis was specifically examined. RESULTS: Thirty studies were included in the final analysis. Poorest quality-of-life scores were associated with women and fingernail involvement. Quality-of-life scores improved from baseline with all treatment types; there were greater improvements reported with oral treatments compared with topical ones. CONCLUSIONS: This review affirms that onychomycosis significantly influences quality of life, warranting effective treatment. All treatments resulted in quality-of-life improvements; however, studies on oral and topical therapies were of higher quality than those evaluating devices. Increased efforts are needed to understand the effect of the disease and therapy as assessed by validated, nail-specific outcome measures that accurately assess patients' cosmetic, physical, and social difficulties.


Asunto(s)
Onicomicosis , Administración Tópica , Antifúngicos/uso terapéutico , Femenino , Humanos , Uñas , Onicomicosis/tratamiento farmacológico , Medición de Resultados Informados por el Paciente , Calidad de Vida
8.
Cleft Palate Craniofac J ; 58(8): 1020-1031, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-33153294

RESUMEN

OBJECTIVE: The concepts important to children and young adults who undergo treatments for facial differences are not well-defined. Measurement of treatment outcomes from the patient's perspective is necessary to ensure goals of treatment are met. We aimed to identify concepts important to children and young adults with facial differences through a qualitative study. DESIGN: An interpretive description qualitative approach was followed. Semistructured interviews were conducted, transcribed verbatim, and coded using a line-by-line approach. Qualitative analysis led to the development of a conceptual framework of outcomes important to patients. SETTING: Interviews were conducted in Canada and the United Kingdom at home, by telephone, or in the hospital. PARTICIPANTS: Participants (N = 72) were recruited between May and June 2014 from craniofacial clinics at the Hospital for Sick Children (Toronto) and Great Ormond Street Hospital (London). Participants included anyone with a visible and/or functional facial difference aged 8 to 29 years and fluent in English, excluding patients with a cleft. The sample included 38 females and 34 males, with a mean age of 13.9 years, and included 28 facial conditions (11 facial paralysis, 18 ear anomalies, 26 skeletal conditions, and 17 soft tissue conditions). RESULTS: Analysis led to identification of important concepts within 4 overarching domains: facial appearance, facial function, adverse effects of treatment, and health-related quality of life (psychological, social, and school function). CONCLUSIONS: Our study provides an understanding of concepts important to children and young adults with facial differences.


Asunto(s)
Cara , Calidad de Vida , Adolescente , Canadá , Niño , Femenino , Humanos , Londres , Masculino , Reino Unido , Adulto Joven
9.
Aesthet Surg J ; 41(5): 566-574, 2021 04 12.
Artículo en Inglés | MEDLINE | ID: mdl-32770219

RESUMEN

BACKGROUND: The BODY-Q Chest module is a patient-reported outcome (PRO) instrument that measures satisfaction with how the chest (10 items) and nipples (5 items) look. This PRO instrument was previously field tested in an international sample of people seeking treatment for gynecomastia (n = 174), weight loss (n = 224), and chest masculinization (n = 341). OBJECTIVES: The aim of this study was to examine the psychometric performance of the BODY-Q Chest module in a new chest masculinization surgery sample. METHODS: Data were collected from patients attending a private plastic surgery outpatient clinic in Canada between January 2018 and June 2019. Rasch measurement theory analysis was used to examine how the scales performed psychometrically. RESULTS: The sample provided 266 assessments (115 preoperative, 151 postoperative). All items had ordered thresholds, providing evidence that the 4 response options for each scale worked as expected. Item fit was within ±2.5 for all items, with all Bonferroni adjusted chi-square values nonsignificant. The data for the chest (χ2(20) = 18.72, P = 0.54) and nipples (χ 2(10) = 12.28, P = 0.27) scales fit the requirements of the Rasch model. Reliability was high with person separation index and Cronbach's α values of ≥0.95 for the chest and ≥0.87 for the nipple scales, respectively. More depressive symptoms on the Patient Health Questionnaire-9 and lower health-related quality of life scales were weakly correlated with worse scores on the chest and nipple scales (P < 0.001). CONCLUSIONS: The BODY-Q Chest module was shown to be scientifically sound in an independent sample of patients seeking chest masculinization surgery.


Asunto(s)
Satisfacción del Paciente , Calidad de Vida , Canadá , Humanos , Masculino , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
10.
Value Health ; 23(1): 74-88, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31952676

RESUMEN

OBJECTIVES: To develop an expert-group, consensus-based list of system performance indicators to be used for monitoring, evaluating, and benchmarking progress for cancer care and control in adolescents and young adults (AYAs) in Canada. METHODS: A national multidisciplinary panel of AYA oncology experts was convened; they prepared a literature review and undertook a brainstorming exercise to create a comprehensive list of indicators based on a previously defined framework for AYA cancer care and control in Canada. A modified Delphi process was then undertaken to cull the list based on 3 quick screen criteria. Three rounds of ranking were required. The fourth stage employed a face-to-face meeting, and the final stage utilized a survey to rank the indicators on the basis of importance and feasibility. RESULTS: Nineteen participants contributed to the 5-stage process. From an initial list of 114 indicators, 14 were ultimately endorsed, representing 5 themes: active care, survivorship, psychosocial issues, palliative care, and research. The 5 highest ranked indicators were assessed as very to moderately feasible, with only a single indicator (clinical trial enrollment) in the top 5 assigned a least feasible ranking. CONCLUSION: The 14 indicators provide a starting point for the development of a standard set of metrics for AYA cancer care and control in Canada and have potential for international utility.


Asunto(s)
Benchmarking/normas , Política de Salud , Oncología Médica/normas , Neoplasias/terapia , Mejoramiento de la Calidad/normas , Indicadores de Calidad de la Atención de Salud/normas , Adolescente , Adulto , Factores de Edad , Canadá , Consenso , Técnica Delphi , Progresión de la Enfermedad , Humanos , Neoplasias/diagnóstico , Neoplasias/mortalidad , Supervivencia sin Progresión , Calidad de Vida , Participación de los Interesados , Factores de Tiempo , Adulto Joven
11.
J Pediatr Hematol Oncol ; 40(8): 580-587, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-29901560

RESUMEN

Health-related quality of life (HRQL) improved progressively during therapy and beyond in children treated for acute lymphoblastic leukemia on the Dana-Farber Cancer Institute (DFCI) 95-01 protocol. This study aimed to validate that trajectory in a successor study (DFCI 00-01) and to compare the HRQL of patients in the 2 studies. Children aged above 5 years were assessed during each phase of treatment (N=4) and 2 years after completion of therapy. Health status and HRQL were measured using Health Utilities Index (HUI) instruments, HUI2 and HUI3. Quality-adjusted life years (QALYs) were calculated and compared with the general population, and patients treated on DFCI 95-01. Over 5 intervals and 758 HUI assessments, mean HRQL increased progressively from remission induction to the time after treatment (P<0.001). During intensification, high-risk patients had lower HRQL than standard-risk patients (P<0.001). During remission induction, patients on DFCI 95-01 had lower HRQL than patients on DFCI 00-01. Patients on DFCI 00-01 had ~0.2 and 0.3 fewer QALYs than controls, measured by HUI2 and HUI3, respectively. QALYs for DFCI 00-01 patients during treatment were similar to those for DFCI 95-01 patients. The trajectory of improvement in HRQL during the treatment of acute lymphoblastic leukemia in children was confirmed.


Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica , Estado de Salud , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Calidad de Vida , Adolescente , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Lactante , Masculino
12.
Pediatr Blood Cancer ; 63(9): 1615-21, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-27203368

RESUMEN

PURPOSE: This study aimed to estimate the burden of morbidity, in terms of health-related quality of life (HRQL), in survivors of high-risk neuroblastoma (NBL) after myeloablative chemotherapy followed by autologous hematopoietic stem cell transplant (HSCT). PATIENTS AND METHODS: A national population-based survey was undertaken of survivors of high-risk NBL (N = 99), diagnosed between 1991 and 2010 and treated with HSCT. Parents completed a proxy questionnaire incorporating two HRQL measures, Health Utilities Index (HUI) 2 and 3. Children >12 years of age provided self-assessments. Clinical and demographic data were collected. Independent t-test and one-way analysis of variance were used to assess differences. Comparative data were obtained from previously published work and Statistics Canada's 1998 National Population Health Survey. RESULTS: On a scale of 0 (being dead) to 1.0 (perfect health), mean HRQL utility scores were 0.89 (SD = 0.11) in HUI2 and 0.84 (SD = 0.18) in HUI3. Parents reported morbidity in sensation (52.5%), pain (30.3%), cognition (28.0%), and emotion (24.2%) in HUI2 and in hearing (38.4%), pain (30.3%), cognition (27.3%), and speech (23.2%) in HUI3. HRQL was not significantly different compared to NBL survivors treated without HSCT, but was less than in nontransplanted survivors of acute lymphoblastic leukemia and Wilms tumor, and children in the general population, yet higher than in survivors of brain tumors. CONCLUSIONS: HRQL is compromised in high-risk NBL survivors treated with and without HSCT. A differential effect on hearing reflects additional exposure to platinum-based chemotherapy. These results should inform long-term care and the development of new therapeutic interventions.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Neuroblastoma/psicología , Calidad de Vida , Sobrevivientes , Adolescente , Niño , Preescolar , Cognición , Femenino , Audición , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Humanos , Lactante , Masculino , Neuroblastoma/mortalidad , Neuroblastoma/terapia
13.
J Adolesc Young Adult Oncol ; 13(1): 189-196, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37279019

RESUMEN

Purpose: To examine the factors associated with females attending a fertility consultation within 30 days of cancer diagnosis. Methods: This is a retrospective cohort study, including females, 15 to 39 years of age, diagnosed with cancer in Ontario, Canada. Administrative data were used from the Institute of Clinical and Evaluative Sciences for the period 2006 to 2019. A backward selection multivariate logistic regression was performed, with a primary outcome of fertility consultation within 30 days of diagnosis. Results: A total of 20,556 females were included in the study, with 7% having attended a fertility visit within 30 days of diagnosis. Factors associated with being more likely to attend included: not currently having children (odds ratio [OR] = 4.3; confidence interval [95% CI 3.6-5.1]), later years of diagnosis (OR = 3.2; 95% CI [2.8-3.8]), having undergone chemotherapy (OR = 3.6; 95% CI [3.0-4.3]) or radiation therapy (OR = 1.9; 95% CI [1.6-2.2]), and less marginalization within dependency quintiles (OR 1.4; 95% CI [1.1-1.7]). Having a cancer with lower risk to fertility (OR = 0.3; 95% CI [0.2-0.3]), death within a year of diagnosis (OR = 0.4; 95% CI [0.3-0.6]), and residing in a northern region of Ontario (OR = 0.3; 95% CI [0.2-0.4]) were associated with being less likely to attend. For sociodemographic factors, lower levels of income (OR = 0.5; 95% CI [0.4-0.6]) and marginalization with residential instability (OR = 0.6; 95% CI [0.5-0.8]) were associated with being less likely to attend a fertility consultation. Conclusions: Rates for attendance of female fertility consultations after a cancer diagnosis remain low, with disparities by both clinical and demographic factors.


Asunto(s)
Fertilidad , Neoplasias , Niño , Humanos , Adolescente , Femenino , Adulto Joven , Ontario/epidemiología , Estudios Retrospectivos , Neoplasias/diagnóstico , Neoplasias/epidemiología , Neoplasias/terapia , Derivación y Consulta
14.
J Adolesc Young Adult Oncol ; 13(2): 307-315, 2024 Apr.
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.


Asunto(s)
Neoplasias de Cabeza y Cuello , Calidad de Vida , Adolescente , Humanos , Niño , Reproducibilidad de los Resultados , Calidad de Vida/psicología , Satisfacción del Paciente , Encuestas y Cuestionarios , Psicometría
15.
Artículo en Inglés | MEDLINE | ID: mdl-38775456

RESUMEN

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 Rasch Measurement Theory analysis. A test-retest reproducibility study was performed, and construct validity 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 Person Separation Index, Cronbach alpha, and intraclass correlation coefficients 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 hypothesis for construct validity were confirmed. INNOVATION: PROMs 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.

16.
J Plast Reconstr Aesthet Surg ; 95: 231-238, 2024 Jun 07.
Artículo en Inglés | MEDLINE | ID: mdl-38936334

RESUMEN

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.

17.
Facial Plast Surg Aesthet Med ; 26(3): 247-255, 2024.
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.


Asunto(s)
Medición de Resultados Informados por el Paciente , Psicometría , Humanos , Femenino , Adulto , Persona de Mediana Edad , Masculino , Reproducibilidad de los Resultados , Procedimientos Quirúrgicos Mínimamente Invasivos/métodos , Estética , Anciano , Técnicas Cosméticas/psicología , Cara , Satisfacción del Paciente , Encuestas y Cuestionarios , Entrevistas como Asunto
18.
J Plast Reconstr Aesthet Surg ; 93: 62-69, 2024 Jun.
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.


Asunto(s)
Medición de Resultados Informados por el Paciente , Calidad de Vida , Humanos , Masculino , Femenino , Adolescente , Estudios Transversales , Niño , Adulto , Adulto Joven , Deformidades Adquiridas del Oído/cirugía , Deformidades Adquiridas del Oído/psicología , Microtia Congénita/cirugía , Microtia Congénita/psicología
19.
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.

20.
J Adolesc Young Adult Oncol ; 12(2): 232-240, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-35704052

RESUMEN

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.


Asunto(s)
Preservación de la Fertilidad , Neoplasias , Masculino , Humanos , Adolescente , Adulto Joven , Ontario/epidemiología , Estudios de Cohortes , Neoplasias/epidemiología , Neoplasias/terapia , Fertilidad , Derivación y Consulta , Estudios Retrospectivos
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