scholarly journals The measurement performance of the EQ-5D-5L versus EQ-5D-3L in patients with hidradenitis suppurativa

Author(s):  
Alex Bató ◽  
Valentin Brodszky ◽  
L. Hunor Gergely ◽  
Krisztián Gáspár ◽  
Norbert Wikonkál ◽  
...  

Abstract Purpose Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects up to 1% of the population in Europe. The EQ-5D is the most commonly used generic instrument for measuring health-related quality of life among HS patients. This study aims to compare the measurement properties of the two adult versions of EQ-5D (EQ-5D-3L and EQ-5D-5L) in patients with HS. Methods We recruited 200 consecutive patients with HS (mean age 37 years, 38% severe or very severe HS) to participate in a multicentre cross-sectional survey. Patients completed the EQ-5D-3L, EQ-5D-5L, Dermatology Life Quality Index (DLQI) and Skindex-16 questionnaires. Results More than twice as many different health state profiles occurred in the EQ-5D-5L compared to the EQ-5D-3L (101 vs. 43). A significant reduction in ceiling effect was found for the mobility, self-care and usual activities dimensions. A good agreement was established between the EQ-5D-3L and EQ-5D-5L with an intraclass correlation coefficient of 0.872 (95% CI 0.830–0.903; p < 0.001) that was confirmed by a Bland-Altman plot. EQ-5D-5L improved both the absolute and relative informativity in all dimensions except for anxiety/depression. EQ-5D-3L and EQ-5D-5L demonstrated similar convergent validity with DLQI and Skindex-16. EQ-5D-5L was able to better discriminate between known groups of patients based on the number of comorbidities and disease severity (HS-Physician's Global Assessment). Conclusion In patients with HS, the EQ-5D-5L outperformed the EQ-5D-3L in feasibility, ceiling effects, informativity and known-groups validity for many important clinical characteristics. We recommend using the EQ-5D-5L in HS patients across various settings, including clinical care, research and economic evaluations.

2020 ◽  
Vol 24 (5) ◽  
pp. 457-460
Author(s):  
Lauren A.V. Orenstein ◽  
Adaugo Amah ◽  
Fiona M. Shaw ◽  
Chao Zhang ◽  
Robert A. Swerlick ◽  
...  

Background Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that severely impairs patients’ quality of life (QoL). Instruments such as the 10-item Dermatology Life Quality Index and 16-item Skindex-16 have been used to assess QoL in HS; however, it is unknown whether the shorter 3-item Skindex-mini can also provide an accurate assessment of skin-related QoL in patients with HS. Objectives The aim was to assess how well the Skindex-16 correlates with its shorter adaptation, the Skindex-mini, in capturing QoL among patients with HS. Methods This retrospective cross-sectional study included all HS patients seen in the HS Clinic at The Emory Clinic between January 1, 2019, and August 16, 2019. We compared the correlation between the symptom, emotion, and function domains of the Skindex-16 and Skindex-mini using Pearson correlation coefficients (CC). Secondary outcome measures included individual survey item analysis, ItchyQuant scores, and numeric rating scale of pain. Results We identified 108 encounters among 75 unique hidradenitis suppurativa patients (43 black/African American, 18 white, 5 Asian/Pacific Islander, 3 Latino, 4 Other, 2 unknown). Pearson CC between the Skindex-16 and Skindex-mini domain scores for all encounters were 0.770 ( P < .001), 0.787 ( P < .001), and 0.801 ( P < .001) for the symptom, emotion, and function domains, respectively. The mean pain and ItchyQuant scores were 4.14 (SD 3.31) and 3.55 (SD 3.34), respectively. Conclusions The Skindex-mini correlated highly with the Skindex-16 in a racially diverse group of patients with HS. The Skindex-mini is a streamlined QoL instrument that could be practically implemented into routine clinical care among diverse patients presenting to dermatology.


Author(s):  
Fanni Rencz ◽  
Ariel Z. Mitev ◽  
Balázs Jenei ◽  
Valentin Brodszky

Abstract Background Capability well-being captures well-being based on people’s ability to do the things they value in life. So far, no capability well-being measures have been validated in dermatological patients. Objectives To validate the adult version of the ICEpop CAPability measure (ICECAP-A) in patients with dermatological conditions. We aimed to test floor and ceiling effects, structural, convergent and known-group validity, and measurement invariance. Methods In 2020, an online, cross-sectional survey was carried out in Hungary. Respondents with self-reported physician-diagnosed dermatological conditions completed the ICECAP-A, Satisfaction with Life Scale (SWLS), WHO-5 Well-Being Index and two dermatology-specific measures, Dermatology Life Quality Index (DLQI) and Skindex-16. Results 618 respondents (mean age 51 years) self-reported a physician-diagnosed dermatological condition, with warts, eczema, onychomycosis, acne and psoriasis being the most common. ICECAP-A performed well with no floor and mild ceiling effects. The violation of local independence assumption was found between the attributes of ‘attachment’ and ‘enjoyment’. ICECAP-A index scores correlated strongly with SWLS and WHO-5 (rs = 0.597–0.644) and weakly with DLQI and Skindex-16 (rs = − 0.233 to − 0.292). ICECAP-A was able to distinguish between subsets of patients defined by education and income level, marital, employment and health status. Multigroup confirmatory factor analysis indicated measurement invariance across most of these subgroups. Conclusions This is the first study to validate a capability well-being measure in patients with dermatological conditions. The ICECAP-A was found to be a valid tool to assess capability well-being in dermatological patients. Future work is recommended to test measurement properties of ICECAP-A in chronic inflammatory skin conditions.


Author(s):  
Petra Baji ◽  
Miklós Farkas ◽  
Ágota Dobos ◽  
Zsombor Zrubka ◽  
Levente Kovács ◽  
...  

Abstract Objective The ICECAP-A and ICECAP-O were validated as capability wellbeing measures of adults aged 18 + and 65 + years, respectively. We aimed to compare their measurement properties in age group 50–70. Methods Data were derived from a cross-sectional survey among a sample representative for the adult Hungarian population. Respondents aged between 50 and 70 filled in both the ICECAP-A and ICECAP-O questionnaires. We assessed and compared feasibility, agreement, discriminatory power, convergent and content validity of the two instruments and explored the determinants of the differences between the two measures. Results 707 respondents (99.4%) provided full answers to both questionnaires (46.3% women, average age 60.1 years). The instruments showed similar construct and convergent validity and discriminatory power. Pearson-correlations between instrument items were strong (r > 0.5). ICECAP-A and ICECAP-O scores could be calculated from each other with a good confidence (R2 = 0.69 and 0.71). ICECAP-O scores (mean 0.87, SD = 0.12) were systematically higher than ICECAP-A scores (0.85, SD = 0.15) in most subgroups. The difference increased with the deterioration of capability and health, and with age. Regression results showed that employment and health status had larger marginal effect on the ICECAP-A than on the ICECAP-O scores, and these effects were larger than the effect of age on both measures. Conclusion Validity of both instruments was confirmed in the age groups 50–70. Given that employment and health status are important determinants of the differences between the two instruments besides age, the possibility of linking the choice between ICECAP-A and ICECAP-O to these factors should be investigated by further research.


2020 ◽  
Vol 47 (2) ◽  
pp. 107-115
Author(s):  
Elizabeth Bradley ◽  
Andrew Shelton ◽  
Trevor Hodge ◽  
David Morris ◽  
Hilary Bekker ◽  
...  

Objective: To measure patient-reported impact of orthodontic treatment in terms of pre-treatment concerns, treatment experience and treatment outcome. Setting: Four sites in Yorkshire, including two secondary care settings (Leeds Dental Institute and St Luke’s Hospital, Bradford) and two specialist orthodontic practices. Design: Cross-sectional survey. Participants: NHS orthodontic patients (aged 12+ years) who have completed comprehensive orthodontic treatment, excluding orthognathic surgery and craniofacial anomalies. Methods: Participants were opportunistically identified by the direct clinical care team during scheduled appointments and those eligible were invited to participate. Data were collected using the Orthodontic Patient Treatment Impact Questionnaire (OPTIQ), a validated 12-item measure with questions relating to pre-treatment experience, impact of treatment and outcome from treatment. Results: Completed questionnaires for analysis included 120 from primary care and 83 from secondary care. The most common pre-treatment concerns were alignment (89%) and being embarrassed to smile (63%). The most common expectations from orthodontic treatment were improved confidence to eat (87%) and smile (72%) in front of others, improved appearance of teeth (85%) and reduced teasing/bullying (63%). Only 67% respondents recalled receiving written information and the lowest recall related to retainer type and length of retention. The most commonly reported complications were sore mouth (68%), fixed appliance breakage (61%) and gingivitis (39%). Treatment caused greatest impact in relation to pain, limitations in eating and effect on speech. Overall satisfaction with orthodontic treatment was reported by 96% of respondents, 87% would have orthodontic treatment again (if needed) and 91% would recommend treatment to a friend. Conclusions: The OPTIQ is a useful patient-reported tool to identify pre-treatment concerns and expectations, treatment experience and outcome. Orthodontic treatment leads to high levels of satisfaction.


2021 ◽  
pp. 105566562110403
Author(s):  
Todd C. Edwards ◽  
Carrie L. Heike ◽  
Kathleen A. Kapp-Simon ◽  
Salene M. Jones ◽  
Brian G. Leroux ◽  
...  

Objective We evaluated the measurement properties for item and domain scores of the Infant with Clefts Observation Outcomes Instrument (iCOO). Design Cross-sectional (before lip surgery) and longitudinal study (preoperative baseline and 2 days and 2 months after lip surgery). Setting Three academic craniofacial centers and national online advertisements. Participants Primary caregivers with an infant with cleft lip with or without cleft palate (CL  ±  P) scheduled to undergo primary lip repair. There were 133 primary caregivers at baseline, 115 at 2 days postsurgery, and 112 at 2 months postsurgery. Main Outcome Measure(s) Caregiver observation items ( n = 61) and global impression of health and function items ( n = 8) across eight health domains. Results Mean age at surgery was 6.0 months (range 2.7-11.8 months). Five of eight iCOO domains have scale scores, with Cronbach’s alphas ranging from 0.67 to 0.87. Except for the Facial Skin and Mouth domain, iCOO scales had acceptable intraclass correlation coefficients (ICCs) ranging from 0.76 to 0.84. The internal consistency of the Global Impression items across all domains was 0.90 and had acceptable ICCs (range 0.76-0.91). Sixteen out of 20 (nonscale) items had acceptable ICCs (range 0.66-0.96). As anticipated, iCOO scores 2 days postoperatively were generally lower than baseline and scores 2 months postsurgery were consistent with baseline or higher. The iCOO took approximately 10 min to complete. Conclusions The iCOO meets measurement standards and may be used for assessing the impact of cleft-related treatments in clinical research and care. More research is needed on its use in various treatment contexts.


Viruses ◽  
2019 ◽  
Vol 11 (2) ◽  
pp. 194 ◽  
Author(s):  
Marie-Claude Battista ◽  
Christine Loignon ◽  
Lynda Benhadj ◽  
Elysee Nouvet ◽  
Srinivas Murthy ◽  
...  

During the Ebola outbreak, mortality reduction was attributed to multiple improvements in supportive care delivered in Ebola treatment units (ETUs). We aimed to identify high-priority supportive care measures, as well as perceived barriers and facilitators to their implementation, for patients with Ebola Virus Disease (EVD). We conducted a cross-sectional survey of key stakeholders involved in the response to the 2014–2016 West African EVD outbreak. Out of 57 email invitations, 44 responses were received, and 29 respondents completed the survey. The respondents listed insufficient numbers of health workers (23/29, 79%), improper tools for the documentation of clinical data (n = 22/28, 79%), insufficient material resources (n = 22/29, 76%), and unadapted personal protective equipment (n = 20/28, 71%) as the main barriers to the provision of supportive care in ETUs. Facilitators to the provision of supportive care included team camaraderie (n in agreement = 25/28, 89%), ability to speak the local language (22/28, 79%), and having treatment protocols in place (22/28, 79%). This survey highlights a consensus across various stakeholders involved in the response to the 2014–2016 EVD outbreak on a limited number of high-priority supportive care interventions for clinical practice guidelines. Identified barriers and facilitators further inform the application of guidelines.


Author(s):  
Carmen Ramos-Alejos-Pita ◽  
Salvador Arias-Santiago ◽  
Alejandro Molina-Leyva

Hidradenitis suppurativa (HS) is a chronic inflammatory disease that impairs patients’ physical and mental health. However, few studies have considered the consequences of HS on cohabitants. The aims of this study were to explore the impact of HS on the quality of life (QOL) of cohabitants and to assess potentially associated factors. A cross-sectional study was conducted and patients with HS and their cohabitants were invited to participate. Validated questionnaires were used to measure QOL, anxiety and depression, type D personality and sexual dysfunction. The clinical variables of patients and the demographic characteristics of cohabitants were also collected. Twenty-seven patients and 27 cohabitants were included for analysis. Patients and cohabitants presented significant QOL impairment. A direct association was found between the Dermatology Life Quality Index (DLQI) and the Familiar Dermatology Life Quality Index (FDLQI). DLQI scores were associated with the presence of negative affectivity, a trait typical of type D personality, as well as with cohabitants’ anxiety. FDLQI scores were associated with cohabitant anxiety and patient depression. Hidradenitis suppurativa damages quality of life in patients and cohabitants. Identifying potential psychological factors could help us to recognize at-risk patients and apply personalized treatments for them and their environment.


2019 ◽  
Vol 77 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Samuel Fuhrimann ◽  
Philipp Staudacher ◽  
Christian Lindh ◽  
Berna van Wendel de Joode ◽  
Ana M Mora ◽  
...  

ObjectiveEstimates of pesticide exposure among applicators from low- and middle-income countries (LMICs) are scarce, and exposure assessment methods are sometimes costly or logistically unfeasible. We examined the variability in weeklong pesticide exposure among applicators in Costa Rica and its predictors.MethodsWe conducted a cross-sectional survey among 221 pesticide applicators from organic, sustainable and conventional farms in 2016. We administered structured questionnaires to assess pesticide application practices at two time points (4–6 weeks apart). We adapted an existing algorithm to fit the context of smallholders and derive weekly pesticide exposure scores. We used linear mixed-effect models to examine within-worker and between-worker score variability. We then identified sociodemographic and occupational predictors of weekly pesticide exposure scores.ResultsWe observed high within-worker and between-worker variability in weekly pesticide exposures (eg, up to 180-fold and 70-fold differences in average weekly exposures within and between workers, respectively; intraclass correlation coefficient=0.4). Applicators working on conventional and sustainable farms had exposure scores twofold and 1.5-fold higher than those working in organic farms, respectively. Farm workers who received training on pesticide use had weekly pesticide exposure scores of 33% (95% CI 1% to 55%) lower than those who did not receive any training.ConclusionsIn this study of applicators from smallholder farms in Costa Rica, we determined the importance of collecting questionnaire data on self-reported pesticide use repeatedly due to its high variability within workers and absence of application records. Our questionnaire-based exposure algorithm could allow the calculation of semiquantitative estimates of average pesticide exposure for applicators from other LMICs.


2006 ◽  
Vol 35 (2) ◽  
pp. 132-137 ◽  
Author(s):  
Robert van Seventer ◽  
Alesia Sadosky ◽  
Melanie Lucero ◽  
Ellen Dukes

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