Hidradenitis suppurativa is a chronic skin disease associated with significant disease burden. To assess patients' treatment benefits, disease-specific outcomes measurement is needed. This study aimed to develop a questionnaire called Patient Benefit Index for hidradenitis suppurativa (PBI-HS). After an open- item survey, the items were condensed into a 26-item questionnaire on patient needs and benefits, with a 5-point Likert scale. In the validation study, construct and content validity, responsiveness, and feasibility of the questionnaire were assessed at 2 time points. A 26-item questionnaire was created following open- item generation by n = 72 patients. In the validation study, 3 items perceived as most relevant by patients were: "to be free of pain" (mean: 3.6 on a scale of 0-4), "to be free of inflammation" (mean: 3.6), "to have no more scars" (mean: 3.1). Significant correlations of PBI-HS at follow-up visit were found with the physical global assessment for hidradenitis suppurativa (HS- PGA) (r = -0.471; p = 0.000), number of inflammatory lesions (r = -0.359; p = 0.005), and DLQI (r = -0.383; p = 0.003), indicating less disease burden in patients with higher treatment benefits. The PBI-HS is a feasible and valid instrument to assess patient-reported treatment benefits in hidradenitis suppurativa.

Hidradenitis suppurativa is a chronic disease that disrupts patients’ physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0–4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach’s alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.

This systematic review aims to provide an update on measurement properties of patient-reported outcome measures for pruritus. A Medline literature search was conducted to update the systematic review published in this journal in 2017 and to identify new validation studies published between October 2015 and July 2019. The methodological quality of validation studies was assessed on the basis of the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist, and the measurement properties of patient-reported outcome measures were evaluated. A total of 19 new studies were included and added to the 22 studies identified in the previously published review. Evidence from all the 41 studies evaluating 38 different measures was summarized. Outcome measures were mapped to one of three constructs where possible: pruritus intensity, pruritus severity, pruritus-specific health-related QOL. COSMIN rating revealed mixed results, with deficiencies in the methodological quality of many studies across all constructs. The most appropriate pruritus severity measure was the Itch Severity Scale. ItchyQoL and the disease-specific Uremic Pruritus in Dialysis Scale achieved the most promising results considering the construct pruritus-specific health-related QOL. For pruritus intensity, nine measures performed similarly well.

Misconceptions about visible skin diseases are widespread, and patients often face discrimination and stigmatization due to their condition. The associated negative health and psychosocial consequences of stigmatization in skin diseases have prompted an increase in research activity in recent times, resulting in a wide variety of assessment measures. This study aimed at aggregating and evaluating evidence of psychometric properties and methodological quality of published measures to assess stigma in visible skin diseases. Studies assessing stigmatization in visible skin diseases were searched in four databases (Medline, PsycINFO, Web of Science and Embase) until February 2021. The review followed PRISMA guidelines. Papers regarding development and/or validation of measures were identified by two independent researchers. Inclusion criteria were defined as follows: (i) quantitative studies in (ii) populations with skin diseases using (iii) questionnaires explicitly assessing (iv) perceived or public stigmatization or discrimination available in (iv) English or German language. The COnsensus-based Standards of health Measurement INstruments (COSMIN) checklist was used to evaluate their psychometric properties and risk of bias. 35 studies using 21 instruments were identified. Twenty instruments focused on assessing the perceived reality of those affected by visible skin diseases, while public stigma was only assessed by two instruments. Twelve scales could be recommended for use, while nine instruments had the potential to be recommended after further studies have assessed their quality. Some limitations are to be noted. Only studies in English and German were included. Research on self-constructed instruments can lead to new validated instruments, but they were not included in the review at this point. Several validated instruments could be recommended for use. Future research is needed regarding the assessment of stigma across different visible skin diseases, in children and adolescents, and in the general public.

The disease-related costs of psoriasis are of considerable importance, as the drug expenses for psoriasis in Germany have risen continuously in recent years. Overall, the economic burden of psoriasis markedly depends on disease-specific characteristics such as severity and comorbidity. Furthermore, there are differences in the healthcare costs between patients treated with biologics compared to those using traditional systemic treatments..

BACKGROUND:The questionnaire for the quality of life with chronic wounds (Wound-QoL) is a valid and reliable instrument to determine the disease-specific health-related QoL of patients with chronic wounds. For the interpretation of HRQoL scores, it is additionally important to know which differences in scores are considered meaningful. The minimal important difference (MID) is defined as a change in HRQoL that a patient would consider meaningful, such that the patient would judge a treatment to be beneficial and worthy of repeating.OBJECTIVE:To interpret changes in the Wound-QoL scores and draw conclusions regarding the relevance of detected changes; the purpose of this study was to estimate the MID of the Wound-QoL global score and its subscales for patients with chronic wounds.PATIENTS AND METHODS:Patients completed the Wound-QoL before and four to six weeks after treatment and additionally gave a global rating of wound status change after treatment. The global rating of change served as an anchor question. MIDs were calculated based on an anchor-based and a distribution-based method.RESULTS:In total, 227 patients participated in the study. The mean age of the study population was 66.9 (± 12.7) median was 69.5, and 51.5% of the patients were female. MIDs for the Wound-QoL global score ranged from 0.47 to 0.52, proposing an overall estimation of 0.50.CONCLUSION:The results can be used to measure and interpret changes in wound-specific QoL over time.

Asking patients to rate health-related quality of life (HRQoL) of hypothetical individuals described in anchoring vignettes has been proposed to enhance knowledge on how patients understand and respond to HRQoL questionnaires. In this article, we describe the development of anchoring vignettes and explore their utility for measuring response shift in patients’ self-reports of HRQoL. We conducted an explorative mixed-methods study. One hundred patients with multiple sclerosis or psoriasis participated in two interviews at intervals of 3–6 months. During both interviews, patients assessed HRQoL of 16 hypothetical individuals on the SF-12 questionnaire (two vignettes for each of the eight domains of the SF-12). In addition to these quantitative ratings, we used the think-aloud method to explore changes in patients’ verbalization of their decision processes during vignette ratings. Agreement of vignette ratings at baseline and follow-up was low (ICCs < 0.55). In addition, paired sample t-tests revealed no significant directional mean changes in vignette ratings. Thus, ratings changed non-directionally, neither confirming retest reliability nor a systematic change of assessment. Furthermore, patients’ verbalization of their decision processes did not indicate whether or not the assessment strategy of individual patients had changed. Patients’ ratings of anchoring vignettes fluctuate non-directionally over time. The think-aloud method appears not to be informative in exploring whether these fluctuations are due to changes in the individual decision process. Overall, vignettes might not be an appropriate approach to explore response shift, at least with regard to the specific target population and the use of the SF-12.

Journal of the European Academy of Dermatology and VenereologyVolume 35, Issue 1 p. e63-e65 Letter to the Editor Determinants of costs and benefits in psoriasis routine care: results from a cross-sectional nationwide study in Germany N. Zander, Corresponding Author N. Zander n.zander@uke.de orcid.org/0000-0003-0628-9717 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyShared co-first authorship. Correspondence: N. Zander. E-mail: n.zander@uke.deSearch for more papers by this authorM. Naatz, M. Naatz Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyShared co-first authorship.Search for more papers by this authorM. Augustin, M. Augustin orcid.org/0000-0002-4026-8728 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorA. Langenbruch, A. Langenbruch orcid.org/0000-0002-3642-5540 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorJ. Topp, J. Topp orcid.org/0000-0002-7105-3244 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorU. Mrowietz, U. Mrowietz orcid.org/0000-0002-9539-0712 Psoriasis Center, Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, GermanySearch for more papers by this authorR. von Kiedrowski, R. von Kiedrowski Dermatology Office and Dermatology Study Center (CMSS) Dr. Ralph von Kiedrowski, Selters/Westerwald, GermanySearch for more papers by this authorM. Krensel, M. Krensel Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorD. Jungen, D. Jungen orcid.org/0000-0003-4185-1947 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorN. Kirsten, N. Kirsten orcid.org/0000-0003-2390-2309 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this author N. Zander, Corresponding Author N. Zander n.zander@uke.de orcid.org/0000-0003-0628-9717 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyShared co-first authorship. Correspondence: N. Zander. E-mail: n.zander@uke.deSearch for more papers by this authorM. Naatz, M. Naatz Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyShared co-first authorship.Search for more papers by this authorM. Augustin, M. Augustin orcid.org/0000-0002-4026-8728 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorA. Langenbruch, A. Langenbruch orcid.org/0000-0002-3642-5540 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorJ. Topp, J. Topp orcid.org/0000-0002-7105-3244 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorU. Mrowietz, U. Mrowietz orcid.org/0000-0002-9539-0712 Psoriasis Center, Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, GermanySearch for more papers by this authorR. von Kiedrowski, R. von Kiedrowski Dermatology Office and Dermatology Study Center (CMSS) Dr. Ralph von Kiedrowski, Selters/Westerwald, GermanySearch for more papers by this authorM. Krensel, M. Krensel Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorD. Jungen, D. Jungen orcid.org/0000-0003-4185-1947 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this authorN. Kirsten, N. Kirsten orcid.org/0000-0003-2390-2309 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanySearch for more papers by this author First published: 10 July 2020 https://doi.org/10.1111/jdv.16807Citations: 4 Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume35, Issue1January 2021Pages e63-e65 RelatedInformation

Background Perception of psoriasis in the general population is characterized by knowledge deficits and prejudice against those affected. The extent and possible predictors of stigmatizing attitudes remain unclear. Objectives The aim was to assess prejudices and stigmatization of people with psoriasis and to identify sociodemographic and attitude-related variables accounting for stigmatization. Methods Representative telephone surveys of 2004 (in 2017) and 2001 (in 2018) adults using a standardized questionnaire. Descriptive analyses were applied to living area, age, gender, educational status, general knowledge and attitudes about psoriasis. Logistic regression analyses were carried out to determine which variables are associated with the assessment of prejudices of 'others' against people with psoriasis. Those prejudices were specified by the following statements: 'they should take better care of themselves', 'don't want to touch people with psoriasis' and 'disgusted by psoriasis'. Results The majority of those surveyed (74%) believe that people with psoriasis are disadvantaged. Similarly, a majority (69%) said that most people find psoriasis disgusting, do not want to touch people with psoriasis (59%) and think that people with psoriasis need to take better care of themselves (45%). 'Willing to enter a relationship with an affected person' (OR = 0.330, P = 0.029), higher age (OR = 1.027, P < 0.001) and male gender (OR = 1.263, P = 0.034) proved to be significantly associated with 'psoriasis is disgusting'. Education (OR = 1.648, P = 0.016) and lower age (OR = 0.847, P < 0.001) are significantly associated with 'they need to take better care of themselves'. Conclusions Data suggest that stigmatization of skin diseases is still entrenched. This overview shows the need for interventions against stigmatization of those affected. Results imply that gender, age and education level and related health literacy of the target groups of respective interventions should be taken into account.

This study investigated the validity and feasibility of the Patient Benefit Index 2.0 (PBI 2.0), a short instrument to assess patient-relevant treatment benefit. In a cross-sectional study, patients with skin diseases completed the PBI 2.0 alongside instruments on quality of life and disease-specific PBI long versions to assess convergent validity. Feasibility questions appraise comprehensibility, completeness, length, and readability. Data from a longitudinal study were used to explore responsiveness and test-retest reliability. Most patients rated the PBI 2.0 easy to understand, complete, legible, and not too long. The amount of missing values was overall low. In all groups, except for vitiligo, correlation analyses indicated good convergent validity of PBI 2.0. Responsiveness of the PBI 2.0 could not be clearly confirmed. Retest-reliability achieved satisfactory results. Thus, the PBI 2.0 may be a suitable instrument for its use in different skin diseases. Its broad applicability allows for comparisons across diagnosis groups.

ObjectiveThis study aimed to quantify recall bias in the measurement of health-related quality of life (HRQoL), that is, the extent to which recollection is impaired and leads to distorted judgements.DesignProspective observational study.Setting and participantsOne hundred patients with two paradigmatic chronic diseases (50 with multiple sclerosis and 50 with psoriasis) were recruited at two outpatient clinics.Methods and outcome measuresPatients completed the online version of the 12-Item Short Form Survey (SF-12) repeatedly for 28 consecutive days: (1) daily, considering the past 24 hours; (2) weekly, considering the past 7 days; and (3) on the last day of data collection, considering the past 4 weeks. SF-12 scores for all three measurement approaches were subsequently converted into preference-based utility indices (Short-Form Six-Dimension). Agreement of the three indices was analysed on group and individual patient levels.ResultsThe mean age of participants was 40.3 years (±12.0), and 63% were female. The utility index based on daily recall (0.74±0.13) was more positive than indices based on a weekly (0.70±0.13, p<0.001) or a monthly (0.70±0.14, p<0.001) recall. While agreement of measurement approaches was high on group level (intraclass correlation coefficient>0.85), it was lower for the subgroup of patients experiencing high variability of HRQoL over time. Bland-Altman plots revealed considerable differences on individual patient level.ConclusionsOn the group level, retrospective overestimation and underestimation of HRQoL almost cancelled out one another and recall bias was relatively small. Therefore, a 4-week recall period could be appropriate when group-level data are used for research or economic evaluations. In contrast, recall bias can be considerable on the individual patient level and may thus impact decision-making in clinical practice.Trial registration numberVfD_RECALL_16_003837.

Many patients with a visible chronic skin disease experience discrimination and stigmatization. This results in psychosocial impairments in addition to the burden of disease and emphasizes the urgency to implement effective stigma-reduction strategies. To synthesize what is known globally about effective interventions to reduce stigma associated with visible chronic skin diseases, a systematic review was conducted. Four electronic databases were searched until May 2018. Studies evaluating interventions to reduce stigmatization in patients with visible chronic skin diseases and applying at least one stigma-related outcome measure were included. Data were extracted on study design, country, study population, outcome measures and main findings. Results were subsequently synthesized in a narrative review. Critical Appraisal Skills Programme tools were used to assess study quality. Nineteen studies were included in the review. Study design was very heterogeneous and study quality rather poor. Thirteen studies addresses patients with leprosy in low- and middle-income countries, and one study each targeted patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia. Evaluated interventions were mainly multi-faceted incorporating more than one type of intervention. While 10 studies focused on the reduction in self-stigma and 4 on the reduction in public stigma, another 5 studies aimed at reducing both. The present review revealed a lack of high-quality studies on effective approaches to reduce stigmatization of patients with visible chronic skin diseases. Development and evaluation of intervention formats to adequately address stigma is essential to promote patients' health and well-being.

BackgroundAlthough long-term use of benzodiazepines (BZDs) and Z drugs is associated with various side effects, they remain popular among the older population. Possible reasons for this phenomenon could be ineffective ways of transmitting information on the health risks associated with long-term use, and communication gaps between patients and healthcare professionals.AimThe aim was to investigate the views of patients, physicians, nurses, and pharmacists regarding long-term BZD and Z drug use.Design & settingThe qualitative study design used focus group interviews with physicians, pharmacists, and nurses in Hamburg. Patient interviews were conducted in Lippstadt, Germany.MethodThe interviews were audiotaped with each participant’s permission, transcribed, and thematically analysed using a software program for qualitative research (MAXQDA).ResultsThe data from the four focus groups consisting of 28 participants were analysed. Patients indicated lack of knowledge about risks and side effects, difficult access to alternatives, and fears of ceasing drug use without professional support. Although the physicians were reported to be cautious about prescribing BZDs and Z drugs, the psychosocial problems of older patients are often considered to be complex and treatment knowledge, experience, and resources are frequently unsatisfactory. Nurses described that when BZDs were prescribed, they did not feel it was their responsibility to evaluate their effects. Pharmacists were reported to be strongly ambivalent in informing patients about the risks, which may contradict the prescription advice provided by the physician.ConclusionPatients, physicians, nurses, and pharmacists reported differences in the perception of long-term BZD and Z drug use. Nevertheless, all of the participants described lack of information and expressed the need for greater communication exchange.

Purpose Patients' individual understanding of health-related quality of life (HRQoL) varies widely, making the measurement of this complex and subjective construct challenging. Anchoring vignettes, i.e., descriptions of fictive patients may provide insights into patients' individual questionnaire reference frames, assessment processes, and understanding of HRQoL. This study analyzes how patients assess HRQoL of vignettes. Methods This exploratory mixed-method study included 100 patients with a chronic disease (50 multiple sclerosis (MS); 50 psoriasis). Sixteen vignettes, two for each domain of the SF-12v2, were developed based on literature recommendations and pretested in a convenience sample of seven healthy individuals. Patients assessed their own HRQoL and HRQoL of the vignettes on the SF-12v2. In semi-structured interviews, they justified their assessments. We quantitatively analyzed associations of vignette assessments with individual characteristics using linear regression models and qualitatively analyzed assessment justifications. Results Patients' age and disease were significant (p < 0.05) predictors for ten and seven vignette assessments, respectively. Older patients assessed vignettes being less extreme; patients diagnosed with MS rated them more positively. Overall, adjusted R-2 values ranged from 0.033 to 0.172. Qualitatively, most of the ratings were based on the evaluation of symptoms or impairments in daily life. Fewer participants ranked different dimensions of HRQoL in a personal hierarchy or assumed impairments beyond the vignette description. Conclusions The understanding of HRQoL may vary substantially and is associated with individual characteristics, individual assessment strategies, and probably other intrinsic factors as explained variance was quite low. Therefore, usage of generic instruments only allows for limited comparison across groups.