Development of Measurement Tools to Assess Cumulative Life Course Impairment in Patients with Chronic Skin Diseases.

INTRODUCTION: Patients with chronic skin diseases suffer from physical, psychological, emotional and social impairments. The overall burden has significant impact on patients' life, contributing to irreversible damage across many domains, known as cumulative life course impairment (CLCI). The aim of this project was to develop instruments which (a) measure persisting CLCI and (b) identify patients at risk for developing future CLCI. METHODS: We identified key topics that negatively impact life course due to skin disease patient-reported open item selection. Subsequently, we conducted focus group interviews with patients and experts to conceptualize items and response scales, resulting in two preliminary measurement tools. These tools were tested in a cognitive debriefing before finalization. RESULTS: Consecutively, 162 patients participated in the open item selection and indicated the following topics were most relevant to their disease: disease symptoms, risk behaviour, comorbidities, psychological and emotional impairments, physical impairments, occupational impairments, treatment, sexuality, problems with family or friends, everyday life and positive event or decisions because of the disease. In the focus group interviews, patients reported stigmatization, support at disease onset, pre-existing diseases and age of onset as additional important topics. The cognitive debriefing resulted in minor changes to sentence structure. The final tools included: (1) DermCLCI-r, which assesses retrospective CLCI, and (2) DermCLCI-p, which assesses current CLCI and future risk. Each tool consisted of 30 items. DISCUSSION: The newly developed measures allow for early identification of CLCI, facilitate adequate dermatological and psychosocial interventions and may contribute to the prevention of CLCI. Further validation studies will be performed.

Psychological (co)morbidity in patients with psoriasis: the impact of pruritus and anogenital involvement on symptoms of depression and anxiety and on body dysmorphic concerns - a cross-sectional study.

OBJECTIVES: While stress plays a paramount role on the onset/exacerbation of psoriasis, via overactivation of the hypothalamic-pituitary-adrenal axis and increased release of pro-inflammatory cytokines, cutaneous inflammatory response induces, in turn, anxiety/depression symptoms, via body disfigurement and stigmatisation. The intensity of pruritus and anogenital involvement are additional risk factors for psychological comorbidity.Aims were to (1) examine the effects of intensity of pruritus and anogenital psoriasis on disease burden and psychological comorbidity and (2) identify the variables associated with the presence of clinically significant depression, anxiety, and dysmorphic concerns. DESIGN: Cross-sectional study. SETTING: Conducted at the University Medical Center Hamburg-Eppendorf (UKE). PARTICIPANTS: 107 patients with psoriasis (mean age = 46.3, SD = 14.6 years; 53.3% male): 64 with none/mild pruritus; 43 with moderate/severe pruritus; 31 with anogenital psoriasis; 76 not affected in the anogenital area. PRIMARY/SECONDARY OUTCOMES MEASURES: Disease severity was assessed with Psoriasis Area and Severity Index and intensity of pruritus was rated by patients. Patient-reported outcomes included the Dermatology Life Quality Index, ItchyQoL, Patient Benefit Index, Perceived Stigmatisation Questionnaire, and Relationship and Sexuality Scale. Psychological morbidity was assessed with the Patient Health Questionnaire, Generalised Anxiety Disorder, and Dysmorphic Concern Questionnaire. RESULTS: Patients with moderate/severe pruritus reported more quality of life impairments, depression, anxiety and dysmorphic concerns, and less treatment benefits than those with none/mild pruritus. Moderate/severe pruritus had a deleterious effect on depression and stigmatisation for patients without anogenital involvement. Less patient benefits were associated with a higher likelihood of clinically significant depression/anxiety. CONCLUSION: Pruritus induces significant burden and psychological morbidity, particularly for patients without anogenital involvement. However, coping strategies used by patients with anogenital psoriasis might be dysfunctional for overall psychosocial adaptation. Patient-centred healthcare might be the best way to prevent psychological comorbidity. ETHICS APPROVAL: Ethics Committee of the Medical Association of Hamburg (process number PV6083, 28 May 2019).

Exploring the burden of xerosis cutis and the impact of dermatological skin care from patient's perspective.

BACKGROUND: Xerosis cutis is recognized as a burdensome and stressful condition of the skin, resulting in impaired health-related quality of life (HRQoL). Therefore, it should be treated as a relevant skin disease with detailed care and treatment recommendations. METHODS: This cross-sectional, exploratory study aimed to examine xerosis cutis-related burden from patient's perspective and compare it with individuals without xerosis cutis. Within-group comparisons were also performed among patients with xerosis cutis associated with atopic dermatitis (AD) or not. The second aim was to assess the effect of a routinely applied basic skin care therapy in terms of burden release. RESULTS: Overall, 127 participants were included in the study. Patients with xerosis cutis reported a lower quality of life (p = .041), more dysmorphic concerns (p < .001), and higher general anxiety (p = .029) than individuals without xerosis cutis. The presence of AD was associated with lower HRQoL (p = .023), more depression (p = .008) and anxiety symptoms (p = .003), and more stigmatization experiences at baseline (p < .001). CONCLUSION: Patients with xerosis cutis showed higher psychosocial burden than participants without xerosis cutis. Additionally, patients with xerosis and AD had more psychosocial impairments than patients with xerosis without AD.

Assessing the quality of life of people with chronic wounds by using the cross-culturally valid and revised Wound-QoL questionnaire.

The Wound-QoL is an often used reliable and valid measure, originally developed in Germany. It has been sequentially translated and validated for other languages/countries, for the measurement of health-related quality of life (HRQoL) in patients with chronic wounds. However, a study from the United States postulated its benefits from further adaptations. Furthermore, some patients struggled to provide an answer for some of the items. We aimed to test the cross-cultural structure and psychometric performance of the questionnaire to suggest necessary revisions. This cross-sectional analysis of existing data sets included 1185 patients from Germany, the US, the Netherlands, Spain, Sweden, and Israel. Patients in the U.S. Wound Registry completed the Wound-QoL during routine care. Different studies comprised the data collection in the other countries. Almost half of the patients were women (48.4%). Furthermore, 42.6% were diagnosed with leg ulcers. Their average age was 66 years. We used a confirmatory factor analysis and an unconstrained graded response model. We revised and shortened the Wound-QoL from 17 to 14 items. In addition, we supported the cross-cultural metric invariance of the revised Wound-QoL questionnaire. The new version with 14 items and three dimensions revealed good psychometric properties with Cronbach's alpha (α) of 0.913 for the total score, and 0.709-0.907 for different dimensions. Furthermore, we provided strict invariance for different clinical variables. In conclusion, the revised Wound-QoL is a reliable and cross-cultural instrument to measure the HRQoL on patients with chronic wounds. Future studies should analyse the revised Wound-QoL for convergent validity with generic HRQoL questionnaires as well as for determining its sensitivity to clinical change.

Development and psychometric evaluation of the U.S. English Wound-QoL questionnaire to assess health-related quality of life in people with chronic wounds.

People with chronic wounds perceive an impaired health-related quality of life (HRQoL). For the assessment of HRQoL, valid instruments are needed. Therefore, the Wound-QoL questionnaire was originally developed and psychometrically validated for use in Germany. As the Wound-QoL is to be used in numerous countries, international versions are required. Therefore, this study aimed to psychometrically validate the U.S. English Wound-QoL version. Upon translation into U.S. English, psychometric testing was performed based on cross-sectional data deriving from the U.S. Wound Registry. Besides descriptive statistics, internal consistency and concurrent validity were tested. In addition, a graded response model was used. The sample consisted of 599 people with chronic wounds of different etiologies. Participants were between 18 and 95 years old, mean age was 63.7 (SD = 15.9) years. Gender was distributed almost equally, with 47.4% female patients. High internal consistency, low floor and ceiling effects of the subscales could be largely confirmed. The internal consistency of the global score was excellent, with α > .9. Concurrent validity between the Wound-QoL and pain, the surface area of the largest wound, total surface area, and total number of active wounds could be confirmed. In contrast, item response theory (IRT) analyses could not fully confirm the factorial model underlying the Wound-QoL subscales. Furthermore, the items regarding smell and discharge and the items on problems with hitting the wound against something, climbing stairs and feeling dependent on help from others showed a low item information in their belonging dimensions. In conclusion, the newly validated Wound-QoL is available for HRQoL measurement in people with chronic wounds in the United States. It showed good psychometric properties, demonstrating its reliability and validity. Therefore, the instrument may be used to assess HRQoL in clinical practice. However, IRT analyses showed that the instrument may benefit from future refinement.