Willingness to pay in dermatology: assessment of the burden of skin diseases

Willingness to pay (WTP) is a monetary, preference-based, burden-of-disease measure with a potential role in dermatology, where many conditions are temporary and/or mild, and many treatments are inexpensive and one might be able to imagine paying out of pocket. We assessed construct validity by interviewing 254 consecutive dermatology patients at Stanford Medical Center, Grady Hospital, and Parkland Hospital. Instruments asked about an individual's own health status and elicited WTP, time-trade-off (TTO) utilities, and health status quality of life (QOL). We measured WTP cure (short treatment course to eliminate disease) and WTP control (lifelong medication). Our data indicate greater construct validity in non-Medicaid (n=163) than Medicaid (n=91) patients. Non-Medicaid subjects had greater WTP as percent of income for cure (median: 2%) than control (median: 1.6%), P<0.01; Medicaid WTP amounts for control and cure did not differ. Non-Medicaid subjects with verrucae had little QOL impact, no measurable burden by TTO, and a correspondingly low WTP. Medicaid subjects with basal cell carcinoma had a strong, negative QOL impact and high burden by TTO, but had relatively moderate WTP. WTP appears promising in certain income categories. More studies are needed for conclusions about specific diagnoses.     

Use of the Dermatology Life Quality Index (DLQI) in a midwestern US urban clinic.

BACKGROUND: The Dermatology Life Quality Index (DLQI), a self-administered general dermatology quality of life instrument, was originally developed and published in a dermatology clinic at University Hospital of Wales. OBJECTIVE: Our goal was to test the feasibility of having patients answer the DLQI in a busy dermatology clinic and to find out to what extent results vary from those published in Wales. We also wanted to examine the validity of the index in terms of the correlation between DLQI scores and stage of illness (disease severity). METHODS: We administered the DLQI to 200 consecutive patients who were seen in a dermatology clinic at Indiana University Medical Center. Results were examined in light of results found by those who originated the DLQI. A pilot group of patients were given the DLQI and rated for severity of disease by means of the Dermatology Index of Disease Severity (DIDS). RESULTS: Overall, the DLQI is easy to administer and can be completed within 3 minutes. The scores in our study were compatible with those previously reported by the DLQI originators. There was a "ceiling" effect in that 11% of the patients indicated no quality of life impairment on the DLQI rating. This index shows stratification with severity of disease. CONCLUSION: The DLQI is an easy and efficient instrument for assessing quality of life in dermatology patients. Patients needed minimal assistance with the form. Our results were similar to those of the DLQI originators, and this further shows reliability and validity of the DLQI. In addition, this study further supports the use of DLQI as a quality of life instrument suitable for use in international studies.     

Patient preference quality of life measures in dermatology

Patient quality of life (QOL) is an important aspect of health care. It is crucial that we continue to develop instruments to assist in detecting burden of disease, interpreting outcomes of clinical trials, determining cost effectiveness of therapies, and guiding clinical decision making. The measurement of patient preferences, specifically utilities and contingent valuation, for health states provides data that can assist in the aforementioned endeavors. Patient preferences have been measured in many areas of medicine. However, it is relatively new to the field of dermatology. The present authors provide an overview of the basic concepts of patient preference measures and how they compare to the widely used health status instruments. Various techniques that have been used to elicit patient preferences are discussed, including standard gamble, time trade-off, willingness-to-pay, rating scales, health utilities index, and EuroQol (EQ-5D). In addition, the present authors review the current literature reporting utilities relevant to dermatology.     

Lebensqualität und Berufsdermatosen – Entwicklung und Überprüfung eines Fragebogens zur Lebensqualität bei Berufsdermatosen (LIOD – Life Quality Index Occupational Dermatoses)

Background: Quality of life (QOL) is an established parameter in dermatology; it is known that skin diseases can affect QOL adversely. There are no specific questionnaires that consider the consider the effect of occupational factors as triggers for work‐related diseases, even though such a questionnaire could link QOL specifically with the work situation. Patients and methods: Based on a literature search and the analysis of existing study instruments, a questionnaire reflecting “Life Quality Index Occupational Dermatoses (LIOD)” was developed and studied in four different groups of persons (N = 228) with and without dermatological diseases. Results: Using the “Guidelines for QOL‐assessment in dermatological studies”, a test comparing LIOD to established instruments showed a reliability quotient of 0.804. Cronsbach's alpha was 0.898. The logical and discriminate validity were tested and found to be significant. Hypotheses that had been devised while developing the test were confirmed. Conclusions: The validated LIOD questionnaire is a valuable addition to existing instruments in dermatology. LIOD may be used to gain data reflecting the efficacy of therapeutic strategies comparable to medical data.     

Quality of life: a research gap in teledermatology

An important outcome in healthcare, and in particular for dermatologic healthcare, is quality of life. Whereas the literature is well represented by quality of life assessments in dermatology, very little information is available that specifically addresses teledermatology's impact on quality of life. This gap in our knowledge of teledermatology is noteworthy precisely because of the importance that quality of life plays in dermatologic disease and healthcare delivery. The goal of this review is to briefly outline the concept of quality of life and its importance to dermatology, describe the different type of instruments that are used to assess quality of life, and to review studies that implemented teledermatology interventions and made quality of life assessments. The available literature has shown that teledermatology interventions do result in improved quality of life, and those changes correlate with improvements in disease severity and clinical course. Integrating quality of life assessments in future evaluations of teledermatology interventions would be valuable to provide a more comprehensive depiction of teledermatology's impact on patients receiving dermatology care via telemedicine.     

Quality of life instrument for Turkish people with skin diseases

BACKGROUND AND OBJECTIVE: To develop a new, short, self-administrated subjective quality of life (QOL) instrument for Turkish people with skin diseases. PATIENTS AND METHODS: The 11-item questionnaire of QOL instrument was developed from 200 consecutive dermatological patients' replies. The reliability and validity of the instrument was tested on data gathered from 278 patients with skin diseases attending a dermatology outpatient department and 49 normal subjects. Construct validity was assessed by an exploratory factor analyses and comparisons between patients rated severe and not severe, as well as between normal and patient groups. Reliability was assessed from the internal consistency of the scales and the correlations were made between scores from a 7-10-day retest by using intraclass correlation coefficient. RESULTS: Factor analyses found six separate dimensions of QOL involving skin disease: social life, emotional life, daily activity, symptoms, cognitive life and sexual life. In addition, 81.3% of common variance was explained by the above factors, all of which correlated with the scale scores of the instrument. The instrument scales were internally consistent (Cronbach's alpha= 0.77-0.84) and scale scores were reproducible after 7-10 days (ICC = 0.63-0.88). Significantly, correlations between scale scores and physician's assessment of the severity of the skin disease were found. Significant differences between diagnostic groups were observed with higher scores for patients with psoriasis, urticaria and acne than those with eczema in the emotional life domain (P < 0.05). In the sexual life domain, however, the eczema group had higher scores than patients with psoriasis, urticaria or acne (P < 0.01). CONCLUSION: The instrument provides valid and reliable assessments of QOL in Turkish patients with skin disease.     

Impact of Psoriasis on Quality of Life: Relationship between Clinical Response to Therapy and Change in Health-related Quality of Life

Background

Psoriasis exerts significant, negative, impact on patients'' quality of life (QOL). Recently, the relationship between QOL and skin lesion improvement has been emphasized in the treatment of psoriasis patients.

Objective

The purpose of study was to compare the QOL in psoriasis and other skin diseases, and to evaluate the generic QOL, skin specific QOL, stress, depression and anxiety before and after treatment in patients.

Methods

A total of 138 patients with psoriasis were recruited in this study and 83 patients complete the questionnaire at week 16. Questionnaires were comprised of generic WHO QOL scale, dermatology specific questionnaires (Skindex-29), psoriasis life stress inventory (PLSI), Beck depression inventory (BDI), and Beck anxiety inventory (BAI). Clinical response was assessed by the PASI.

Results

After treatment, health-related QOL was improved and PASI improvement showed smaller correlation with Skindex-29, compared with the correlations between self-reported severity score (SRSS) improvement and Skindex-29. Regression analysis revealed that duration, SRSS, stress, and depression were factors affecting baseline HRQOL in patients, and age, duration, and SRSS were predictors associated with HTQOL score changes.

Conclusion

Treatment improved HRQOL, BAI, BDI, and PLSI scores. Psoriasis may become more burdensome in groups of patients who suffer long disease duration, high SRSS, depression, and stressful environments.     

Quality of life issues for South Africans with acne vulgaris

The adverse effects of acne on the psyche have been established in patients from 'first world' countries. There has been no in depth study in predominantly black patients from Africa addressing this issue. This was a prospective cross-sectional study of acne patients attending a dermatology unit in KwaZulu-Natal, South Africa. A questionnaire was completed and acne graded by the Global Acne Grading scale. Psychological morbidity and quality of life (QOL) were assessed by the General Health Questionnaire and Dermatology Specific Quality of Life Questionnaires, respectively. We found that clinical severity was not associated with patient perception or psychological distress. The QOL measures such as feelings, social activities, performance at work or school, activities of daily living and overall mental health were found to be associated with distress with associated P-values of 0.0002, 0.0168, 0.0032, 0.033 and < 0.0001, respectively. The severity of acne was not associated with psychological distress. Painful and bleeding lesions were associated with distress levels; P = 0.042 and P = 0.019, respectively. In conclusion, South African patients with acne vulgaris suffer significant psychological distress, which affects the quality of their lives.     

Quality of life in patients with pemphigus receiving adjuvant therapy

Background. Pemphigus has a strong effect on patients’ quality of life (QOL). Aim. To analyze QOL and psychological well‐being within patient groups, subdivided according to their different adjuvant treatments. Methods. All adult patients with pemphigus enrolled in the study were assessed using the Short Form (SF)‐36, the Skindex‐29, and the General Health Questionnaire (GHQ)‐12 for health status, effect of dermatology‐specific aspects, and the presence of psychological comorbidity, respectively. The study population was subdivided into the following treatment groups: (i) those who were untreated or were treated only with corticosteroids (CS) at a dose of ≤ 5 mg/day (no adjuvant treatment, NAT); and patients receiving or not receiving CS ≤ 5 mg/day who also received either (ii) azathioprine (AZ), (iii) cyclophosphamide (CY), (iv) mycophenolate mofetil (MM) or (v) rituximab (RTX). Results. In total, 113 patients were recruited. There were no significant differences between the treatment subgroups in either the SF‐36 or Skindex‐29 results. However, for the GHQ, there were large differences in QOL scores between patients scoring > 4 points (GHQ+) and those scoring < 4 points (GHQ?), especially for the more ‘physical’ components of QOL. The overall observed proportion of GHQ+ patients was 33.6%. Conclusions. We found no significant differences in QOL impairment between the treatment subgroups; however, we observed a strong association between psychiatric morbidity and poorer QOL within each of the treatment groups. This should be of concern for dermatologists, as psychiatric morbidity is associated with poor treatment adherence and dissatisfaction with care.     

Health-related quality of life in patients with atopic dermatitis

Atopic dermatitis (AD) is a chronic relapsing condition that can have considerable effects on the patients' quality of life (QOL). The aim of this study was to measure the health-related QOL in patients with AD, using generic and specific instruments, to compare the scores obtained by different instruments and to verify the relationship between them. We conducted a cross-sectional study of 132 outpatients with AD. To assess the QOL, Short Form 36 (SF-36), Dermatology Life Quality Index (DLQI) and Children's Dermatology Life Quality Index (CDLQI) were administered. In order to assess the disease severity of AD, we used the Eczema Area and Severity Index (EASI) and physician assessment of disease severity. Stressful life events during the last 12?months were assessed with Paykel's Interview for Recent Life Events. Patients with AD had inferior social functioning and mental health scores compared with the general population. The correlations between the DLQI and SF-36 were found for the mental components of the QOL. Increasing disease severity was associated with greater impairment in QOL in both, children and adults. Our study found the influence of the stressful life events on the role emotional of AD patients. These results demonstrate that AD influences health-related QOL, especially in children. This study supports the decision to use both generic and skin-specific instruments to assess the impact of AD on QOL.     

Adaptation of a Runyankore version of Skindex-16 for oral administration in Mbarara, Uganda

Background Health‐related quality of life instruments are typically developed and validated for use in developed countries by patients who can read and write. Little is known about the feasibility of using adaptations of validated instruments in situations where literacy rates are low. Objective We aimed to translate, culturally adapt, and test an oral version of Skindex‐16 in Runyankore, the predominant language in Mbarara, Uganda, for use in dermatologic research. Methods Skindex‐16 was forward‐ and back‐translated to Runyankore. The Runyankore version was administered orally to 47 dermatology patients and 47 random hospital visitors. Additional questions regarding duration, dyspigmentation, concealment status of the skin problem, and overall quality of life effect were also asked. Results Oral delivery was feasible; ≤10 minutes per subject. High Cronbach α values (0.86, 0.88, and 0.85 for symptoms, emotions, and functioning subscales, respectively) demonstrated internal consistency reliability. As hypothesized, subjects with reported skin problems, dyspigmentation, and difficulty in concealment had higher mean Skindex scores. A total of 72.4% of responses to the open‐ended question were addressed in Skindex‐16, indicating content validity. Conclusion The orally delivered Runyankore version of Skindex‐16 is reliable, with construct and content validity, and feasible for use in dermatology research in Mbarara, Uganda. Orally administered quality of life instruments have potential for use in low literacy groups worldwide.     

Psychiatric evaluation of the dermatology patient

Over one third of dermatologic disorders have significant psychiatric comorbidity. The impact of the skin disorder on quality of life, the role of psychosocial stressors, and use of substances should be assessed. Major depressive disorder is the most frequently encountered psychiatric disorder in dermatology and is often associated with suicide risk. Other psychiatric syndromes comorbid with dermatologic disorders include obsessive-compulsive disorder, social phobia, posttraumatic stress disorder associated with dissociation and conversion symptoms, body image pathologies, delusional disorder, and a wide range of personality disorders. This article reviews psychiatric guidelines that may be used to assess psychopathology in the dermatology patient.     

Construct validity and responsiveness of the Colombian version of Skindex-29

Until three decades ago, the understanding of disease and treatment effects on patients’ daily lives was very poor. More recently, and due to the fact that international scientific collaboration has increased, patient-reported outcomes (PRO) and quality-of-life (QOL) in particular, have become essential tools to evaluate the effect of any medication according to the patient´s perspective. However, as most QOL scales have been developed in English, there is a growing need to adapt them for use across different cultures but to make sure that the original instrument (scale) and the adapted scale are equivalent, a process that has been called “validation”. As QOL is a complex concept in which the precise meaning of questions can vary between individuals of different countries and cultures, so establishing its validity is quite difficult. In this respect, construct validity (instrument ability to measure a construct or concept), convergent/discriminant validity (correlation/lack of correlation of the instrument in comparison to another instrument), and responsiveness (instrument ability to detect change over time) are all crucial properties that test the instrument's accuracy. Therefore, this study aimed to assess these properties in the Colombian version of Skindex-29, which is a QOL scale. Validity and responsiveness were tested in 209 dermatology patients and 56 people without skin disease. Patients had either inflammatory or non-inflammatory skin diseases. Construct validity was assessed through a test called confirmatory factor analysis, which shows the relationship between all questions (items) of the instrument, and how they cluster around the QOL concept. The convergent/discriminant validity was evaluated by a test called the Spearman correlation coefficient, and responsiveness was tested through the standardized response mean. The authors found that the Colombian version of Skindex-29 is a valid and clinically sensitive instrument that can be used for clinical practice (e.g. by doctors treating patients) and for research, to measure the impact of skin diseases on quality-of-life in dermatology patients.     

How does psoriasis affect quality of life? Assessing an Ingram‐regimen outpatient programme and validating the WHOQOL‐100

BACKGROUND, OBJECTIVES AND METHODS: This paper reports a longitudinal study of the quality of life (QOL) of outpatients receiving treatment for psoriasis in secondary care that was designed to validate a new QOL measure for use in psoriasis: the WHOQOL-100. Additional aims were to monitor the changes to the QOL of psoriasis patients (n = 83) following a course of topical treatment--a modified Ingram regimen--and to compare their QOL with healthy people (n = 105). RESULTS: General QOL was much improved following treatment; psychological facets of body image and appearance, self-esteem and negative feelings were particularly responsive to clinical change, in addition to positive feelings and cognitive capacity. Domains on spirituality, independence and physical health also improved. Compared with healthy controls, pretreatment psoriasis patients showed poorer physical, psychological, independence and spiritual QOL. Validity and reliability were investigated and found to be good to excellent. Internal consistency was very good in 23 facets out of 25. Domains and facets were strongly correlated (weaker for spirituality) largely reaffirming the WHOQOL concept. While physical, independence and psychological domains have some components similar to the Short Form-36, the social and environment domains represent novel conceptual areas for the WHOQOL. Facets about positive and negative feelings were validated by results from the Profile of Mood States. Psoriasis severity was associated with QOL in only six facets out of 25. CONCLUSIONS: The WHOQOL-100 is reliable and valid, and hence a new and important measure for assessing quality of life in psoriasis.     

Comorbidities and health‐related quality of life in Spanish patients with moderate to severe psoriasis: A cross‐sectional study (Arizona study)

Psoriasis is a common, chronic inflammatory immunologically mediated disease of the skin, showing a high prevalence of associated comorbidities, and strongly affecting patients' health‐related quality of life (HR‐QOL), with profound impact on the psychological aspect. We aimed to establish the correlation between HR‐QOL and the associated comorbidities in patients with moderate to severe psoriasis in Spain. A cross‐sectional, observational, epidemiological study was conducted at 68 dermatology‐based centers across Spain. From October 2010 to June 2011, all adult patients diagnosed with moderate to severe psoriasis at least 6 months prior to the study visit and receiving or not receiving treatment for psoriasis were eligible for inclusion. A total of 1022 patients were included. The study population showed mean 36‐item short‐form (SF‐36) physical and mental health scores and Dermatological Life Quality Index (DLQI) of 49.7, 46.2 and 5.3, respectively. The multiple linear regression models showed that patients with moderate to severe psoriasis and a diagnosis of psoriatic arthritis (PsA), hypertension, diabetes mellitus, sleep disturbances or obesity were found to have lower SF‐36 health physical scores. Female patients with depression or anxiety disorders had lower SF‐36 health mental scores. Patients diagnosed with moderate to severe psoriatic disease and associated anxiety disorder had greater DLQI scores. Moderate to severe psoriasis has a significant burden on the HR‐QOL of patients. Regardless of sex, patients with several comorbidities such as PsA, hypertension or obesity were found to have worse scores in the physical component of the QOL questionnaire, whilst women were more affected in the mental health component than men.     

Assessing Quality of Life in Patients with Acne Vulgaris

Diagnosing acne is easy. However, treatment must be adapted to the type and severity of acne, and must also take into account the impact of acne on patients' quality of life. As there is not always a correlation between the severity of acne and its impact on quality of life, it can be helpful for the dermatologist to use a quality of life scale to determine the psychological impact of acne on patients. Either global scales or specific scales for acne can be used. This article reviews the different scales used for evaluation of quality of life in patients with acne.Consideration of specific scales suggests that the Acne Disability Index/Cardiff Acne Disability Index is the easiest scale to use in routine dermatology practice. The Acne Quality of Life scale is particularly useful for evaluating anxiety and depression. The Acne-Specific Quality of Life questionnaire has been mainly validated in adult acne. The Assessment of the Psychological and Social Effects of Acne scale has yet to be validated. Clinical trials indicate that use of global and specific scales together has complementary benefits. In the management of acne, evaluation of quality of life may help to detect depression in teenagers. It may also help to enhance adherence to treatment, which is a crucial factor for success. Finally, there are now validated quality of life scales that are easy to use during patient consultations (taking <2 minutes to complete) by clinicians wishing to evaluate quality of life in patients with acne.     

Quality of life issues in nonmetastatic skin cancer

Background Current knowledge of quality of life (QOL) issues affecting patients with nonmetastatic skin cancer is unsatisfactory, being based either on the use of QOL questionnaires derived from dermatology patients with predominantly benign lesions or inflammatory skin rashes, or on the use of general health QOL questionnaires. Objectives We sought to determine the impact of nonmetastatic skin cancer on patients’ lives by asking such patients for their written opinions. Methods An open‐ended ‘Skin Cancer Quality of Life Question Sheet’ was given to 100 consenting patients with nonmetastatic skin cancer [50 with malignant melanoma (MM) and 50 with nonmelanoma skin cancer (NMSC)]. Results In total, 82 ‘Skin Cancer Quality of Life Question Sheets’ were returned complete (40 MM and 42 NMSC). There were 44 different patient concerns voiced overall in the responses. The concerns were grouped into 10 main themes. Patients with MM were significantly more likely than those with NMSC to mention ‘a sense of relief/gratitude following treatment and/or a commitment to enjoy life here on’ (P = 0·001), ‘feelings of anxiety/depression/guilt/stress towards oneself or family/friends’ (P < 0·001) and ‘strengthening of emotional relationships with family and/or friends’ (P = 0·02). Patients with NMSC were significantly more likely than those with MM to mention ‘concern about the public’s lack of understanding and recognition of skin cancer’ (P = 0·02). The theme ‘realization of one’s mortality’ was commoner among patients with MM than with NMSC, while the theme ‘concern regarding possible scarring/disfigurement or the reaction of others’ was commoner among patients with NMSC than with MM, although neither of these two differences was statistically significant (P = 0·07 and P = 0·11, respectively). Conclusions QOL issues expressed by patients with nonmetastatic skin cancer highlight concerns we must address during their care. A disease‐specific QOL measure suitable for both nonmetastatic MM and nonmetastatic NMSC is needed. The psychosocial impact on patients with nonmetastatic MM must not be underestimated.     

Patients' views of nurse prescribing: effects on care, concordance and medicine taking

Background Skin disease can have a huge impact on quality of life for patients and their families. Nurses have an important role in the delivery of specialist dermatology services, and prescribing enhances the care they provide. The views of dermatology patients about nurse prescribing are unknown. Objectives To explore the views of dermatology patients about nurse prescribing, and its impact on medicines management and concordance. Methods Semistructured interviews were undertaken with a consecutive sample of 42 patients with acne, psoriasis or eczema who attended the clinics of seven dermatology specialist nurse prescribers. Primary and secondary care clinics were included to reflect settings in which nurses typically prescribe for patients within specialist dermatology services in England. Interviews addressed the effects of nurse prescribing on care, the patient’s medicine regimen, involvement in treatment decisions and concordance, and influences on medicine taking. Results Patients believed that nurse prescribing improved access to, and efficiency of, dermatology services. Great value was placed on telephone contact with nurses, and local access. Information exchange and involvement in treatment decisions ensured that treatment plans were appropriate and motivated adherence. Nurses’ specialist knowledge, interactive and caring consultation style, and continuity of care improved confidence in the nurse and treatment concordance. Conclusions Nurse prescribing can increase the efficiency of dermatology services. Patients experienced active involvement in decisions about their treatment which in turn contributed to concordance and adherence to treatment regimens. This study has important implications for maximizing resource use and improving access to and quality of care in dermatology specialist services.     

Psychological symptoms and quality of life of dermatology outpatients and hospitalized dermatology patients

The aim of the investigation was to compare psychological symptoms and health-related quality of life of dermatology patients and healthy controls. The sample consisted of 333 consecutively recruited patients from four dermatology outpatient clinics, 172 hospitalized dermatological patients from two university hospitals and 293 matched healthy controls. All patients and controls completed Beck's Depression Inventory, the Brief Symptom Inventory and the Dermatology Life Quality Index. Hospitalized patients were more distressed than outpatients and healthy controls and reported greater impairment of disease-related quality of life than outpatients. More hospitalized patients had suicidal thoughts and were characterized as having severe to moderate depression compared with outpatients and controls. Female patients and younger patients were generally more distressed than male patients and older patients, and patients with atopic dermatitis and psoriasis were more distressed than patients with urticaria and eczemas. Disease-related impairment of quality of life was the main predictor of psychological symptoms, when controlling for diagnosis, age, gender, disease duration and disease severity. Although older age was associated with fewer psychological symptoms, our data suggest that skin disease affects quality of life equally in young and older patients. The findings highlight the importance of recognizing disease-related psychological problems and possible psychiatric comorbidity of dermatology patients, especially among patients with atopic dermatitis and psoriasis.