Burden of vitiligo on Chinese patients: An online survey.
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ABSTRACT:
SUBMITTER: Amer A
PROVIDER: S-EPMC10538870 | biostudies-literature | 2023 Oct
REPOSITORIES: biostudies-literature
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Burden of vitiligo on Chinese patients: An online survey.
Amer Abdulrahman A Wu Yan Y Li Chunying C Du Juan J Jia Hong H Li Shanshan S Tu Caixia C Li Qiang Q Liu Hongxia H Zhang Junling J Lu Tao T Liu Jinsong J Mei Aihua A Liu Han H Tian Fei F Lu Chong C Li Zihan Z Cao Lixin L Gao Xinghua X
Chinese medical journal 20231005 19
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Project description:BackgroundVitiligo is an acquired depigmented skin disease resulting in white macules, which may significantly impair the quality of life (QoL) of the patients.ObjectiveTo estimate the QoL in Chinese vitiligo patients using camouflage with a more detailed description, and to identify the possible risk factors related to poor QoL.MethodsAn online survey was conducted in vitiligo patients using camouflage from a vitiligo community. Survey questions included demographic, clinical information, dermatology- and vitiligo-specific QoL questionnaires. Multivariate logistic analysis was performed to identify risk factors that related to poor QoL.ResultsIn total, 884 respondents were included in the analyses, of which 413 (46.7%) were male. The score of DLQI was 5.83±5.75 (mean± SD). Age, gender, marriage status, occupational status, anogenital involvement, patient-perceived severity (presented by VAS score), symptoms as itching, pain, sunburn and koebner phenomenon, total cost of treatment and degree of satisfaction in camouflage therapy were independently associated with DLQI score (p<0.05).ConclusionVitiligo has considerable impact on QoL of affected patients in Chinese population even when they were using camouflage. Camouflage might be helpful to improve QoL of the patients.
| S-EPMC6345473 | biostudies-literature
Project description:ObjectivesTo explore the economic burden, prevalence of catastrophic healthcare expenditure (CHE) and the quality of life (QoL) of Chinese patients with visual impairment (VI) associated with eye diseases.DesignA questionnaire survey from March to May 2016 by structured face-to-face interviews of patients with VI.Participants302 patients who were diagnosed with moderate VI or worse in both eyes (visual acuity <6/18) were included, and 298 patients (98.7%) who completed the survey questionnaires were eligible for the study.Outcome measuresThe economic burden was estimated by calculating participants' direct costs covered in 2015 and the definition of CHE was out-of-pocket (OOP) costs exceeding 30% of annual household income. QoL was weighed by health utility value using time-trade-off valuation techniques.ResultsAnnual average direct costs per patient caused by VI were US$6988.6±US$10 834.3, and 70.3% were direct medical costs of which only 26.9% were reimbursable by medical insurance. 32.2% of households that suffered from CHE, in particular, were less wealthy patients with VI living in rural areas and without medical insurance. The health utility value was rated at 0.65 on average, and patients with VI aged 51-57, living alone and insured by commercial medical insurance had relatively less QoL.ConclusionOur study explored the economic burden and QoL of VI associated with patients with eye diseases in China, indicating a substantial economic burden and poor QoL. Preferential medical insurance policies should be designed in relation to people with VI to further reduce the health inequalities, avoid CHE and promote QoL.
| S-EPMC6747637 | biostudies-literature
Project description:The Hippocampus Consortium data set provides estimates of mRNA expression in the adult hippocampus of 99 genetically diverse strains of mice including 67 BXD recombinant inbred strains, 13 CXB recombinant inbred strains, a diverse set of common inbred strains, and two reciprocal F1 hybrids. The hippocampus is an important and intriguing part of the forebrain that is crucial in memory formation and retrieval, and that is often affected in epilepsy, Alzheimer's disease, and schizophrenia. Unlike most other parts of the brain, the hippocampus contains a remarkable population of stems cells that continue to generate neurons and glial cells even in adult mammals (Kempermann, 2005). This genetic analysis of transcript expression in the hippocampus (dentate gyrus, CA1-CA3) is a joint effort of 14 investigators that is supported by numerous agencies described in the acknowledgments section.
2016-07-26 | GSE84767 | GEO
Project description:BACKGROUND:Neurofibromatosis type 1 is an inherited condition with variable phenotypic expression and a high medical and social burden. The objectives of this patient survey were to better understand the real-world experiences of patients living with cutaneous neurofibromas (cNF), to perceive their satisfaction and feelings about cNF current management (only laser and surgery are currently available), and to highlight their expectations of new therapeutic modalities. RESULTS:One hundred seventy patients from 4 European countries took part in the study, 65% (n = 110) were women and mean age was 39 years old. 96% (n = 164) of respondents have cNF on visible parts of the body and the survey confirmed that total number of cNF and visibility increase with age. Patients reported that cNF mainly impacts everyday mood, general daily life and social life. The visibility of cNF had a higher impact than their number. 92% (n = 156) of patients have a regular and multidisciplinary medical follow-up. The dermatologist is one of the most consulted healthcare professionals. 76% (n = 130) of respondents have treated their cNF: 65% (n = 111) had surgery and 38% (n = 64) had multiple laser sessions. Frequency of operations and regrowth of cNF were the two most unsatisfactory aspects with both treatments for patients. Indeed, after removal, new cNF appear in more than 75% (n = 128) of cases. As a future treatment, patients expected a topical (30%, n = 51) or oral medication (29%, n = 50). Around 2 out of 3 patients would agree to take it at least once a day or more for life but they would like a well-tolerated treatment. According to patients, the most important effectiveness criteria of a new treatment are to block cNF growth and reduce their number. 70% (n = 119) of patients would consider a future treatment moderately effective to very effective if it could clear 30% of cNF. CONCLUSIONS:This first cNF European patient community survey confirmed that the visible stigma and unaesthetic aspect of cNF have an important impact on patients' quality of life. The survey highlighted that patients were not entirely satisfied with the actual surgery and laser treatments and revealed their clear and realistic expectations for future treatment of cNF.
| S-EPMC6894276 | biostudies-literature
Project description:BackgroundVitiligo is a chronic depigmenting skin disorder which affects around 0.5-1% of the world's population. The outcome measures used most commonly in trials to judge treatment success focus on repigmentation. Patient-reported outcome measures of treatment success are rarely used, although recommendations have been made for their inclusion in vitiligo trials. This study aimed to evaluate the face validity of a new patient-reported outcome measure of treatment response, for use in future trials and clinical practice.MethodAn online survey to gather initial views on what constitutes treatment success for people with vitiligo or their parents/carers, followed by online discussion groups with patients to reach consensus on what constitutes treatment success for individuals with vitiligo, and how this can be assessed in the context of trials. Participants were recruited from an existing database of vitiligo patients and through posts on the social network sites Facebook and Twitter.ResultsA total of 202 survey responses were received, of which 37 were excluded and 165 analysed. Three main themes emerged as important in assessing treatment response: a) the match between vitiligo and normal skin (how well it blends in); b) how noticeable the vitiligo is and c) a reduction in the size of the white patches. The majority of respondents said they would consider 80% or more repigmentation to be a worthwhile treatment response after 9 months of treatment. Three online discussion groups involving 12 participants led to consensus that treatment success is best measured by asking patients how noticeable their vitiligo is after treatment. This was judged to be best answered using a 5-point Likert scale, on which a score of 4 or 5 represents treatment success.ConclusionsThis study represents the first step in developing a patient reported measure of treatment success in vitiligo trials. Further work is now needed to assess its construct validity and responsiveness to change.
| S-EPMC4075774 | biostudies-literature
Project description:The Affymetrix GeneChip Wheat Genome Array currently provides the most comprehensive coverage of the wheat genome for a microarray. In addition to using this resource for transcript expression studies and hybridization-based DNA marker discovery, we endeavored to use the GeneChip to discover the expression of natural antisense transcript (NAT) pairs. By using alternative target preparation schemes, both the sense- and antisense-strand derived transcripts were labeled and hybridized to the Wheat GeneChip. To enable maximum discovery, five different tissue types were selected for assay, and the wheat cultivar ‘Chinese Spring’ was used considering that most of the GeneChip probe sequences were based on sequencing of this genome. [PLEXdb(http://www.plexdb.org) has submitted this series at GEO on behalf of the original contributor, Tristan Coram. The equivalent experiment is TA21 at PLEXdb.]
2009-06-11 | GSE12528 | GEO
Project description:Generalized vitiligo is an autoimmune disease characterized by melanocyte loss, which results in patchy depigmentation of skin and hair. Recent studies suggested the key role of CD8+T lymphocytes for mediating immune response in vitiligo through melanocyte differentiation antigens, including tyrosinase, gp100 and MelanA/Mart-1. However, the specific epitopes of these auto-antigens are still unknown. In our study, we predicted the possible HLA-A*0201-restricted nonapeptides overlaying the full-length amino acid sequences of these three known antigens and investigated the lymphocytes reactivity to these nonapeptides by Elispot assay. In addition, we evaluated the abilities of these nonapeptides to activate CD8+T cells. We screened out 5 possible epitopes originated from tyrosinase and gp100, numbered P28, P41, P112, P118 and P119. Among these 5 epitopes, notably, P28 and P119 played the dominant role in activating CTLs, with a significant increase in proliferation rate and Interferon-γ (IFN-γ) production of CD8+T cells. Nevertheless, antigen-specific T cell reactivity was not detected in MelanA/Mart-1 peptides. Our studies identified two novel epitopes originated from proteins of gp100 and tyrosinase, which may have implications for the development of immunotherapies for vitiligo.
| S-EPMC5099573 | biostudies-literature
Project description:The Hippocampus Consortium data set provides estimates of mRNA expression in the adult hippocampus of 99 genetically diverse strains of mice including 67 BXD recombinant inbred strains, 13 CXB recombinant inbred strains, a diverse set of common inbred strains, and two reciprocal F1 hybrids. The hippocampus is an important and intriguing part of the forebrain that is crucial in memory formation and retrieval, and that is often affected in epilepsy, Alzheimer's disease, and schizophrenia. Unlike most other parts of the brain, the hippocampus contains a remarkable population of stems cells that continue to generate neurons and glial cells even in adult mammals (Kempermann, 2005). This genetic analysis of transcript expression in the hippocampus (dentate gyrus, CA1-CA3) is a joint effort of 14 investigators that is supported by numerous agencies described in the acknowledgments section. Pooled RNA samples (usually one pool of male hippocampii and one pool of female hippocampii) were prepared using standard protocols. Samples were processed using a total of 206 Affymetrix GeneChip Mouse Expression 430 2.0 short oligomer arrays (MOE430 2.0 or M430v2; see GEO platform ID GPL1261), of which 201 passed quality control and error checking. This particular data set was processed using the PDNN protocol. To simplify comparisons among transforms, PDNN values of each array were adjusted to an average of 8 units and a standard deviation of 2 units.
2016-07-26 | E-GEOD-84767 | biostudies-arrayexpress
Project description:ObjectiveThe objective of this study was to explore the burden of SLE and its effect on patients' lives.MethodsThe Lupus European Online (LEO) survey included patient-designed questions on demographics, SLE diagnosis, and the impact of SLE on careers. Three SLE-specific patient-reported outcome (PRO) questionnaires were also completed: the Lupus Quality of Life (LupusQoL), the Fatigue Severity Scale (FSS), and the Work Productivity and Activity Impairment (WPAI)-Lupus v2.0. The survey was available online in five languages from May through August 2010. All self-identified SLE participants were eligible to respond. Survey results were analysed using descriptive statistics. Multivariate linear regression explored factors contributing to impaired productivity.ResultsOf the 2070 European SLE patients completing the survey, 93.1% were women, 86.7% were aged <50 years and 71.8% had a college or university education. More than two-thirds of respondents (69.5%) reported that SLE affected their careers; 27.7% changed careers within a year of diagnosis. All LupusQoL domains (score range 0-100) were impaired, with fatigue (median domain score 43.8) being the most affected and intimate relationships (median domain score 75.0) the least. Most patients (82.5%) reported fatigue (FSS score ≥4). Productivity was impaired across all WPAI domains, both at work and in general activities. Fatigue, an inability to plan and reduced physical health were significantly associated with impaired productivity. Patients whose careers were affected by SLE had worse health-related quality of life, more fatigue and worse productivity than patients whose careers were not affected.ConclusionLEO survey respondents reported that SLE negatively affects their daily lives, productivity and career choices.
| S-EPMC3828514 | biostudies-literature
Project description:INTRODUCTION:Chemotherapy-induced myelosuppression (CIM) is one of the most common dose-limiting complications of cancer treatment, and is associated with a range of debilitating symptoms that can significantly impact patients' quality of life. The purpose of this study was to understand patients' perspectives on how the side effects of CIM are managed in routine clinical practice. METHODS:An online survey was conducted of participants with breast, lung, or colorectal cancer who had received chemotherapy treatment within the past 12 months, and had experienced at least one episode of myelosuppression in the past year. The survey was administered with predominantly close-ended questions, and lay definitions of key terms were provided to aid response selection. RESULTS:Of 301 participants who completed the online survey, 153 (51%) had breast cancer, 100 (33%) had lung cancer, and 48 (16%) had colorectal cancer. Anemia, neutropenia, lymphopenia, and thrombocytopenia were reported by 61%, 59%, 37%, and 34% of participants, respectively. Most participants (79%) reported having received treatment for CIM, and 64% of participants recalled chemotherapy dose modifications as a result of CIM. Although most participants believed their oncologist was aware of the side effects of CIM, and treated them quickly, 30% of participants felt their oncologists did not understand how uncomfortable they were due to the side effects of CIM. Overall, 88% of participants considered CIM to have a moderate or major impact on their lives. CONCLUSION:The data highlight that despite the various methods used to address CIM, and the patient-focused approach of oncologists, the real-world impact of CIM on patients is substantial. Improving communication between patients and health care providers may help improve patients' understanding of CIM, and foster shared decision-making in terms of treatment. Additional insights from patients should be obtained to further elucidate the totality of life burden associated with CIM.
| S-EPMC7340862 | biostudies-literature