Summary
Background
Generic instruments measuring health‐related quality of life (HRQoL), like EQ5D™, enable comparison of skin diseases with healthy populations and nondermatological medical ...conditions, as well as calculation of utility data.
Objectives
To measure HRQoL in patients with common skin diseases and healthy controls across Europe using the EQ5D.
Methods
This multicentre observational cross‐sectional study was conducted in 13 European countries. Each dermatology clinic recruited at least 250 consecutive adult outpatients to complete questionnaires, including the EQ5D.
Results
There were 5369 participants (4010 patients and 1359 controls). Mean ± SD self‐rated health state reported by patients was 69·9 ± 19·7; for controls it was 82·2 ± 15·5. When adjusted for confounding factors, including comorbidity, mean patient EQ visual analogue scores were 10·5 points lower than for controls (standardized β = −0·23). Odds ratio with 95% confidence interval for impairment in all five dimensions of EQ5D adjusted for confounders was doubled for patients compared with controls. Patients with hidradenitis suppurativa (HS), blistering conditions, leg ulcers, psoriasis and eczemas had the highest risk for reduction in HRQoL in most dimensions (2–10‐fold). Data on differences of impairment by dimensions offer new insights.
Conclusions
This study confirms the large impact skin conditions have on patients’ well‐being, differentiating between aspects of HRQoL. Patients with HS, blistering diseases, leg ulcers, infections and most chronic skin diseases reported reduced HRQoL compared with patients with chronic obstructive lung disease, diabetes mellitus, cardiovascular disease and cancers. These findings are important in the prioritization of resource allocation between medical fields and within dermatological subspecialities.
What is already known about this topic?
The EQ5D™ can be used to compare life quality impairment from diseases across a range of specialties and to generate utility data.
The EQ5D has previously been little used in dermatology.
What does this study add?
This study has generated EQ5D data across a range of dermatological diagnoses in a large cohort of patients across Europe.
Skin diseases affect quality of life differently across different dimensions.
This EQ5D information may assist appropriate care and resource allocation.
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Summary
Background
The physical appearance of psoriasis can be cosmetically disfiguring, resulting in a substantial social burden for patients. An important aspect of this burden is the experience of ...stigmatization. While stigmatization is known to be disabling and stressful for patients, little is known about its correlates, and effective interventions are lacking.
Objectives
To examine predictor variables for perceived stigmatization in psoriasis.
Methods
Questionnaires were administered to 514 patients with psoriasis in a cross‐sectional study. Zero‐order correlation and multiple‐regression analyses were conducted including sociodemographic, disease‐related, personality, illness cognitions and social support predictor variables.
Results
Stigmatization was experienced by 73% of patients to some degree, and correlated with all five categories of predictor variables. In multiple‐regression analyses, stigmatization was associated with higher impact on daily life; lower education; higher disease visibility, severity and duration; higher levels of social inhibition; having a type D personality; and not having a partner.
Conclusions
The results indicate that perceived stigmatization is common in psoriasis, and can be predicted by sociodemographic, disease‐related and personality variables. These predictor variables provide indications of which patients are especially vulnerable regarding perceived stigmatization, which might be used in treatment.
What's already known about this topic?
Perceived stigmatization is common and distressing in patients with psoriasis.
Some of its predictors have been examined in small samples.
What does this study add?
This large study of 514 patients with psoriasis examined a combination of potential predictor variables, both previously examined and never before studied.
Sociodemographic, disease‐related and previously unstudied type D personality variables were found to be predictive of perceived stigmatization.
What are the clinical implications of this work?
These results provide an understanding of which patients may be especially vulnerable to stigmatization‐related problems, which may warrant special attention during treatment.
Aims
Implicit gender biases (IGBs) are unconscious evaluations about a person based on gender. IGBs of healthcare providers may affect medical decision making. This study investigated whether IGBs ...and genders of patients and general practitioners (GPs) influence diagnostics and treatment decisions in the context of diabetes type 2.
Methods
Ninety‐nine GPs participated in this randomized online study. Implicit Associations Tasks were used to measure two IGBs, related to lifestyle (women have a healthier lifestyle than men) and communication (men are less communicative than women). Clinical decisions regarding type 2 diabetes were measured with vignettes that included a fictional male or female patient case.
Results
Female GPs exhibited a significant lifestyle IGB (p < 0.001). GPs of both genders exhibited a significant communication IGB (p < 0.001). Several associations between IGBs and clinical decisions were found. The gender of the vignette character affected several outcomes, for example GPs were less certain in the diabetes diagnosis when the character was a woman (p < 0.001).
Conclusion
We demonstrated that GPs have IGBs and these biases as well as patient's gender affect decisions of GP's when they are solving a diabetes vignette case. Future research is needed to understand the most important consequences of IGBs in the context of type 2 diabetes.
Patients with rheumatic diseases may face 'discounting' (denying and patronising) or 'lack of understanding' because of having symptoms without external clinical signs, but instruments to assess such ...invalidation experiences are lacking.
To develop and evaluate the Illness Invalidation Inventory (3*I), to compare invalidation experiences of two groups of patients who differ in visual signs and laboratory findings-rheumatoid arthritis (RA) and fibromyalgia-and to examine the association of invalidation with health status.
A questionnaire (eight items with respect to five sources: spouse, family, medical professionals, work environment and social services) was constructed. It was completed by 142 patients with RA and 167 patients with fibromyalgia.
Principal axis factoring with oblimin rotation yielded two factors with high internal consistency (α>0.70): 'discounting' (five items) and 'lack of understanding' (three items). Patients with fibromyalgia experienced significantly more discounting and lack of understanding from their family, medical professionals, colleagues and social services than did patients with RA. Both patient groups experienced more invalidation from social services, colleagues and family than from medical professionals and spouses. More discounting and lack of understanding correlated with poorer mental well-being and social functioning in both patient groups. Discounting correlated with more physical disability and pain in patients with RA.
The 3*I is a brief, reliable instrument for assessing patients' perceptions of invalidation from different sources, which differ between patient groups and are associated with health status. Future validation research should clarify the clinical impact of invalidation on treatment adherence and outcome.
Coronavirus disease 2019 is a serious respiratory virus pandemic. Patient characteristics, knowledge of the COVID-19 disease, risk behaviour and mental state will differ between individuals. The ...primary aim of this study was to investigate these variables in patients visiting an emergency department in the Netherlands during the COVID-19 pandemic and to compare the "COVID-19 suspected" (positive and negative tested group) with the "COVID-19 not suspected" (control group) and to compare in the "COVID-19 suspected" group, the positive and negative tested patients.
Consecutive adult patients, visiting the emergency room at the Franciscus Gasthuis & Vlietland, Rotterdam, the Netherlands, were asked to fill out questionnaires on the abovementioned items on an iPad. The patients were either "COVID-19 suspected" (positive and negative tested group) or "COVID-19 not suspected" (control group).
This study included a total of 159 patients, 33 (21%) tested positive, 85 (53%) negative and 41 (26%) were COVID-19 not suspected (control group). All patients in this study were generally aware of transmission risks and virulence and adhered to the non-pharmaceutical interventions. Working as a health care professional was correlated to a higher risk of SARS-Cov-2 infection (p- value 0.04). COVID-19 suspected patients had a significantly higher level of anxiety compared to COVID-19 not suspected patients (p-value < 0.001). The higher the anxiety, the more seriously hygiene measures were followed. The anxiety scores of the patients with (pulmonary) comorbidities were significantly higher than without comorbidities.
This is one of the first (large) study that investigates and compares patient characteristics, knowledge, behaviour, illness perception, and mental state with respect to COVID-19 of patients visiting the emergency room, subdivided as being suspected of having COVID-19 (positive or negative tested) and a control group not suspected of having COVID-19. All patients in this study were generally aware of transmission risks and virulence and adhered to the non-pharmaceutical interventions. COVID-19 suspected patients and patients with (pulmonary) comorbidities were significantly more anxious. However, there is no mass hysteria regarding COVID-19. The higher the degree of fear, the more carefully hygiene measures were observed. Knowledge about the coping of the population during the COVID-19 pandemic is very important, certainly also in the perspective of a possible second outbreak of COVID-19.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
A better understanding of the course and risk factors for impaired long‐term health‐related quality of life (HRQoL; ie, physical, psychological, and social–relational functioning) after kidney ...donation might help clinicians improve the care of live kidney donors. This systematic review and meta‐analysis summarizes prospective studies about the course and predictors of HRQoL in living kidney donors. Studies indicate that shortly after donation, donors have lower HRQoL, with minor to moderate changes in psychological and social–relational functioning and major changes in physical functioning. At 3–12 months after donation, HRQoL returned to baseline or was slightly reduced, particularly for fatigue, but scores were still comparable to general population norms. Results were mainly robust across surgery techniques. A limited number of studies examined risk factors for impaired HRQoL, with low psychological functioning before donation as the most consistent predictor. Based on these results, clinicians can inform potential donors that, on average, kidney donors have high long‐term HRQoL; however, donors with low psychological functioning at baseline are those most at risk of impaired long‐term HRQoL. Future studies should focus on other potentially relevant predictors of postdonation HRQoL, including donor eligibility criteria and donor–recipient relationships, to optimize screening and interventions for donors at risk.
Longer term health‐related quality of life scores of living kidney donors are comparable to baseline and in line with general population norms, with low psychological functioning before donation as the most consistent predictor for impaired longer term scores.
Background
Placebo effects on pain have been found to vary in size for different routes of medication administration (e.g. oral vs. injection). This has important implications for both clinical ...research and practice. To enhance our understanding of these differential placebo effects, research on the underlying expectations about multiple routes and symptoms other than pain is vital.
Methods
A cross‐sectional, Internet‐based survey was conducted in a representative sample of the Dutch population (n = 508). Respondents rated the expected effectiveness of pain‐ and itch‐relieving medication in six forms, representing oral, injection and topical routes of administration.
Results
Injected medication was expected to be most effective for relieving pain, and topical medication for relieving itch. Furthermore, exploratory analyses showed that injections were expected to have the most rapid onset and long‐lasting effects, and to be most frightening and expensive, while topical medication was expected to be the safest and the easiest to use, and oral medication was expected to have the most side effects. Higher expected effectiveness was moderately associated with expectations of more rapid onset and long‐lasting effects, and better safety and ease of use. Associations of expected effectiveness with respondent characteristics (e.g. medication use and personality characteristics) were statistically small or nonsignificant.
Conclusions
Expected effectiveness of medication differed depending on route of administration and targeted symptom. These findings have important implications for the design and interpretation of clinical trials and suggest that medication effects might be enhanced by prescribing medicine via the route that patients expect to be most effective for their complaint.
Significance
Differences in the expected effectiveness of medication depend on the route of administration (oral, injection, topical) and targeted symptom (pain, itch). These findings have important implications for clinical practice and the design and interpretation of clinical trials.
Stress initiates a cascade of (neuro)biological, physiological, and behavioral changes, allowing us to respond to a challenging environment. The human response to acute stress can be studied in ...detail in controlled settings, usually in a laboratory environment. To this end, many studies employ acute stress paradigms to probe stress-related outcomes in healthy and patient populations. Though valuable, these studies in themselves often have relatively limited sample sizes. We established a data-sharing and collaborative interdisciplinary initiative, the STRESS-NL database, which combines (neuro)biological, physiological, and behavioral data across many acute stress studies in order to accelerate our understanding of the human acute stress response in health and disease (www.stressdatabase.eu). Researchers in the stress field from 12 Dutch research groups of 6 Dutch universities created a database to achieve an accurate inventory of (neuro)biological, physiological, and behavioral data from laboratory-based human studies that used acute stress tests. Currently, the STRESS-NL database consists of information on 5529 individual participants (2281 females and 3348 males, age range 6–99 years, mean age 27.7 ± 16 years) stemming from 57 experiments described in 42 independent studies. Studies often did not use the same stress paradigm; outcomes were different and measured at different time points. All studies currently included in the database assessed cortisol levels before, during and after experimental stress, but cortisol measurement will not be a strict requirement for future study inclusion. Here, we report on the creation of the STRESS-NL database and infrastructure to illustrate the potential of accumulating and combining existing data to allow meta-analytical, proof-of-principle analyses. The STRESS-NL database creates a framework that enables human stress research to take new avenues in explorative and hypothesis-driven data analyses with high statistical power. Future steps could be to incorporate new studies beyond the borders of the Netherlands; or build similar databases for experimental stress studies in rodents. In our view, there are major scientific benefits in initiating and maintaining such international efforts.
•This article describes a collaborative initiative combining data from human acute stress studies.•There are (neuro)biological, physiological, and behavioral data from 12 Dutch research groups.•The STRESS-NL database has data on 5529 participants stemming from 57 experiments.•The STRESS-NL database illustrates the potential of combining existing stress data.
OBJECTIVEHealth-related quality of life (HRQoL) is an important outcome in chronic disease. Generic HRQoL questionnaires may not adequately reflect disease-specific challenges in coeliac disease. We ...investigated whether disease-specific HRQoL questionnaires add relevant information to generic measures that will better help to identify patients experiencing problems.
PATIENTS AND METHODSWe performed a cross-cultural validation of the Celiac Disease Quality Of Life-survey (CD-QOL), next we developed and validated a new disease-specific HRQoL questionnaire, and finally compared their predictive validity with the disease-generic RAND SF-36/SF-12 in 825 patients (mean age56.1±15.8 years) with (reported) biopsy-proven coeliac disease. Internal consistency and convergent, discriminative and predictive validity of the questionnaires was determined.
RESULTSTwo Dutch versions of the CD-QOL were validated, consisting of 14 and six items, respectively (CD-QOL-14-NL, CD-QOL-6-NL). We developed and validated the CeliacQ-27, which has 27-items across three subscales (Limitations, Worries and Impact on daily life), and a short seven-item version, the CeliacQ-7. All questionnaires had excellent psychometric properties and differentiated well between active disease and clinical remission and strict versus poor dietary adherence. The added value of the disease-specific questionnaires to the generic HRQoL measure to the explained variance of symptom burden and dietary adherence was limited.
CONCLUSIONHRQoL in patients with coeliac disease can easily be assessed by brief generic as well as disease-specific measures. Disease-specific questionnaires, however, provide more explicit information on disease-relevant areas of functioning.
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