Exploration of Patient Characteristics and Quality of Life in Patients with Lipoedema Using a Survey.
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ABSTRACT:
SUBMITTER: Romeijn JRM
PROVIDER: S-EPMC6002318 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:IntroductionFabry disease is an X-linked lysosomal storage disorder caused by a deficiency of α-galactosidase A. Symptoms include neuropathic pain and gastrointestinal problems, such as diarrhoea. To inform and support the design of a Phase III clinical trial for a new oral treatment for Fabry disease, this study evaluated patients' experiences of Fabry disease symptoms, the impact of symptoms on their quality of life, and their views on participating in clinical trials.MethodsAn online survey questionnaire was distributed to patients with Fabry disease, through relevant patient organisations. The questionnaire consisted mainly of quantitative, closed questions with pre-defined response options. Fabry-specific pain intensity and its impact on quality of life were rated on a scale from 0 to 10.ResultsIn total, 367 patients completed the survey, of whom half reported frequent pain, moderate to severe pain, and pain in their hands and feet. Pain frequency, intensity and location were similar for males and females. There was no clear association between Fabry-specific pain and the use of enzyme replacement therapy (ERT), with moderate to severe pain reported by 80.4% of participants receiving ERT and by 75.0% of participants not receiving ERT. Of participants who were receiving ERT, 35.7% said they were willing to discontinue it to take part in a clinical trial testing a new oral drug for treating Fabry disease. Gastrointestinal symptoms were more heterogeneous in nature and frequency than Fabry-specific pain, but still affected a significant proportion of participants.ConclusionsBoth male and female patients with Fabry disease experience significant Fabry-specific pain, which affects their quality of life. Furthermore, frequent diarrhoea affects many patients. The symptoms occur independently of the use of ERT. This suggests the healthcare needs of patients with Fabry disease are not being fully met, and additional treatments are required to improve symptoms and quality of life.FundingThis study was sponsored by Actelion Pharmaceuticals Ltd. Study sponsorship was transferred to Idorsia Pharmaceuticals Ltd in July 2018.
| S-EPMC6822826 | biostudies-literature
Project description:BackgroundInflammatory bowel disease (IBD) has a significant negative impact on quality of life (QOL); however, the direct impact of IBD on several aspects of patients' lives is unknown. The IMPACT survey was conducted in Europe in 2010-2011 to determine this impact. We conducted the IMPACT survey in Japan and compared the results between subgroups of patients with ulcerative colitis (UC) and Crohn's disease (CD).MethodsThe 52-item IMPACT survey questionnaire assessing treatment and the impact of IBD on patients' lives was translated into Japanese and administered to IBD patients recruited through patient advocacy groups.ResultsBetween June 2013 and January 2014, 172 Japanese IBD patients completed the questionnaire (including 84 UC and 83 CD patients). Half of all patients (84/172, 48.8 %) were satisfied with their treatment plan, and half of those who had undergone surgery were satisfied with the outcome (46/87, 52.9 %). Although 34.9 % (60/172) of patients had not been hospitalized in 5 years, 50.0 % (86/172) had been hospitalized for more than 10 days. During the most recent flare, 49.4 % (85/172) of patients had to reschedule appointments because of IBD. Moreover, 32.0 % (55/172) of patients had to make adjustments such as working part-time or at home to avoid taking sick days; 35.5 % (61/172) of patients felt that they had lost a job because of IBD.ConclusionsOur survey results indicate that IBD patients' lives and social activities are affected by the deterioration of QOL due to IBD and its symptoms.
| S-EPMC5397430 | biostudies-literature
Project description:BackgroundLipoedema is an adipose tissue disorder that is still not fully understood. The primary purpose of this study is to explore the state of knowledge and understanding of lipoedema among Polish women. The secondary aim is to investigate the possible association between knowledge and factors such as BMI, self-reported symptoms, and age.MethodsOne hundred seventy polish women took part in an online survey study that was posted to social media groups and forums in January 2022. The survey consisted of 12 questions and aimed at assessing the basic knowledge about lipoedema.ResultsThe least proportion of participants (4%) could correctly indicate the methods of lipoedema treatment. The accurate definition of lipoedema was indicated only by 7% of women, 12% identified characteristic features of lipoedema, and 37% correctly evaluated lipoedema curability. The greatest proportion of respondents knew the differences between obesity and lipoedema (50%).ConclusionsAwareness of lipoedema among women is deficient. A significant proportion of the respondents report the occurrence of lipoedema symptoms. In order to improve the situation of lipoedema patients, it is crucial to increase the knowledge about this condition both among medical professionals and the general public.
| S-EPMC10464337 | biostudies-literature
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:OBJECTIVES: The main objective of the study was to examine the self reported health status in patients with ankylosing spondylitis (AS) compared with the general population and the secondary objective (in the AS group) was to study the association between health status, demographic parameters, and specific disease instruments in AS. METHODS: A cross sectional study of 100 AS patients recruited between 2006 and 2009 at the Department of Rheumatology. Health status was assessed by using the SF-36 health questionnaire in patients with AS. Demographic characteristics and disease-specific instruments were also examined by the questionnaire. A sample of 112 healthy individuals was also surveyed using the SF-36 health questionnaire. RESULTS: This study showed a great impairment in the quality of life of patients with AS involving all scales. All male patients with AS reported significantly impaired health-related quality of life on all items of the SF-36 compared with the general population whereas female patients reported poorer health on three items only, namely physical functioning, general health and bodily pain. Mental health was mostly affected than physical role. The physical role was significantly higher in patients with high education level than in patients with low education level (p=0.01). Physical functioning was better in employed patients. All scales of SF-36 were correlated with BASFI, BASDAI and BAS-G. Only physical functioning and general health were correlated with BASMI. CONCLUSION: Impairment in the quality of life can be significant when suffering from AS, affecting mental health more than physical health. Among disease parameters, functional impairment, disease activity, mobility limitation, and spinal pain were the most associated factors resulting to the deterioration of quality of life.
| S-EPMC3517697 | biostudies-other
Project description:Lipoedema is a chronic adipose tissue disorder mainly affecting women, causing excess subcutaneous fat deposition on the lower limbs with pain and tenderness. There is often a family history of lipoedema, suggesting a genetic origin, but the contribution of genetics is currently unclear. A tightly phenotyped cohort of 200 lipoedema patients was recruited from two UK specialist clinics. Objective clinical characteristics and measures of quality of life data were obtained. In an attempt to understand the genetic architecture of the disease better, genome-wide single nucleotide polymorphism (SNP) genotype data were obtained, and a genome wide association study (GWAS) was performed on 130 of the recruits. The analysis revealed genetic loci suggestively associated with the lipoedema phenotype, with further support provided by an independent cohort taken from the 100,000 Genomes Project. The top SNP rs1409440 (ORmeta ≈ 2.01, Pmeta ≈ 4 x 10-6) is located upstream of LHFPL6, which is thought to be involved with lipoma formation. Exactly how this relates to lipoedema is not yet understood. This first GWAS of a UK lipoedema cohort has identified genetic regions of suggestive association with the disease. Further replication of these findings in different populations is warranted.
| S-EPMC9560129 | biostudies-literature
Project description:BackgroundLittle is known about health-related quality of life (HRQOL) following treatment for bladder cancer (BC).ObjectiveTo determine this, we undertook a cross-sectional survey covering 10% of the English population.Design, setting, and participantsParticipants 1-10 yr from diagnosis were identified through national cancer registration data.InterventionA postal survey was administered containing generic HRQOL and BC-specific outcome measures. Findings were compared with those of the general population and other pelvic cancer patients.Outcome measurements and statistical analysisGeneric HRQOL was measured using five-level EQ-5D (EQ-5D-5L) and European Organization for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ)-C30. BC-specific outcomes were derived from EORTC QLQ-BLM30 and EORTC QLQ-NMIBC24.Results and limitationsA total of 1796 surveys were completed (response rate 55%), including 868 (48%) patients with non-muscle-invasive BC, 893 (50%) patients who received radiotherapy or radical cystectomy, and 35 (1.9%) patients for whom treatment was unknown. Most (69%) of the participants reported at least one problem in any EQ-5D dimension. Age/sex-adjusted generic HRQOL outcomes were similar across all stages and treatment groups, whilst problems increased with age (problems in one or more EQ-5D dimensions: <65 yr [67% {95% confidence interval or CI: 61-74}] vs 85+ yr [84% {95% CI: 81-89}], p = 0.016) and long-term conditions (no conditions [53% {95% CI: 48-58}] vs more than four conditions [94% {95% CI: 90-97}], p < 0.001). Sexual problems were reported commonly in men, increasing with younger age and radical treatment. Younger participants (under 65 yr) reported more financial difficulties (mean score 20 [95% CI: 16-25]) than those aged 85+ yr (6.8 [4.5-9.2], p < 0.001). HRQOL for BC patients (for comparison, males with problems in one or more EQ-5D dimensions 69% [95% CI: 66-72]) was significantly worse than what has been found after colorectal and prostate cancers and in the general population (51% [95% CI: 48-53], all p < 0.05).ConclusionsHRQOL following BC appears to be relatively independent of disease stage, treatment, and multimodal care. Issues are reported with sexual function and financial toxicity. HRQOL after BC is worse than that after other pelvic cancers.Patient summaryPatients living with bladder cancer often have reduced quality of life, which may be worse than that for other common pelvic cancer patients. Age and other illnesses appear to be more important in determining this quality of life than the treatments received. Many men complain of sexual problems. Younger patients have financial worries.
| S-EPMC8082273 | biostudies-literature
Project description:Background and aimOstomy is a radical treatment that is sometimes required due to severe inflammatory bowel disease (IBD), colorectal cancer (CRC), and so on. Around 8000 people in New Zealand live with stoma bags. We studied factors associated with poor quality of life (QoL) in ostomy patients to improve patient care.MethodsEligible adult patients identified through the Southern District Health Board database were invited to participate. The survey consisted of the general stoma QoL, IBD, CRC QoL, and dietary and lifestyle questionnaires.ResultsResponse rate was 54.5% (n = 241/448). Study participants were a mean (SD) 70.9 (14.2) years old, 60.6% were male, and 89.5% were New Zealand European; 52.5% of the study participants had a colostomy, and 56.4 and 22.4% received their stoma due to CRC and IBD, respectively. Median (first-third interquartile range) duration since ostomy for overall study sample was 6.9 (3.3-15.1) years. Mean (SD) Stoma-QoL score for all the patients was 60.3 (10.8) points (scale 20-80). Stoma-underlying disease (P = 0.28) and type of stoma (P = 0.60) were not associated with Stoma-QoL scores. Older adults had higher Stoma-QoL, IBD questionnaire and QLQ-C30 quality-of-life scores; 73.1% received dietary recommendations for the stoma, And 56.4% changed their diet, 51.4% found it easy to adhere to dietary recommendations, and 9.2% found it quite/very difficult.ConclusionThis study found high-quality life scores in postostomy patients and no significant association between the underlying disease, time since ostomy, level of comorbidities, and how the appliance worked, which highlight the multifactorial nature of the quality of life concept and difficulties measuring it.
| S-EPMC7578297 | biostudies-literature
Project description:BackgroundIn order to effectively target and provide individualised patient support strategies it is crucial to have a comprehensive picture of those presenting for services. The purpose of this study was to determine the characteristics and patient rated outcomes of individuals presenting to SolarisCare cancer support centres and their choices regarding complementary and integrated therapies (CIT).MethodsA cohort with a current or previous cancer diagnosis aged 18 - 87 years presenting to a SolarisCare centre during a 5-day period completed a questionnaire. Four SolarisCare centres participated in the trial including regional and metropolitan locations. Outcomes included medical and demographic characteristics, CIT variables and patient rated outcomes (PROs) including quality of life (QoL).ResultsOf the 95 participants (70.3%) who completed the survey, the mean age was 60.5 years with 62% currently receiving treatment. Eighty percent of the sample had at least one other comorbid condition, with the most popular CIT being relaxation massage. Of the PROs, QoL was significantly lower than norms for the Australian population and other mixed cancer populations. No notable differences were seen between genders, however significantly poorer outcomes were found for the younger age group. Fifty percent of the population did not meet physical activity recommendations, and musculoskeletal symptoms explained between 25-27% of variance in QoL.ConclusionsA greater understanding of the health profiles of patients presenting to supportive care centres and their use of CIT, provides Western Australian health professionals with key information to ensure the safety of supportive care practices, as well as fosters optimal patient outcomes and enhances the integration of supportive care strategies within mainstream medical care.
| S-EPMC3717092 | biostudies-literature
Project description:IntroductionLichen planus (LP) is an inflammatory skin disorder that can present in various forms across the body, including lesions on the skin (cutaneous LP [CLP]), scalp (lichen planopilaris [LPP]), and mucosal regions (mucosal LP [MLP]). Qualitative exploration of the patient experience of LP, notably symptoms and impacts on health-related quality of life (HRQoL), is limited. A scarcity of research was also identified relating to emotional wellbeing impacts of CLP patients. Two qualitative studies were conducted with LP patients to address these gaps.MethodsStudy 1 consisted of exit interviews conducted with a subset of adult patients with MLP (n = 5), CLP (n = 4), and LPP (n = 4) enrolled in an LP clinical study in the United States (US) to explore the patient experience. Study 2 consisted of independent qualitative interviews conducted with adult CLP patients (n = 13) from the US and Germany to further explore impacts on emotional wellbeing.ResultsExit interviews found that itch , pain, and skin lesions were most frequently reported as signs/symptoms of LP. Itch and skin lesions were experienced across all LP subtypes, while pain was only reported by CLP and MLP patients. These signs/symptoms impacted HRQoL including emotional wellbeing (frustration, embarrassment), daily activities (oral hygiene, clothing options), social functioning (intimacy, social activities), and physical functioning (chewing/swallowing, opening/moving mouth). Impacts on activities of daily living (ADL) and physical functioning were mostly experienced by MLP patients. Independent qualitative interviews, which further explored impacts of CLP on patients' emotional wellbeing, identified frustration, worry, sadness, embarrassment, and depression as the most frequently experienced.ConclusionThe findings contribute to the literature by providing qualitative insights into signs/symptoms and HRQoL impacts of LP, from the adult patient perspective. The findings also highlight the importance of considering assessment of HRQoL impacts in future clinical LP research, particularly impacts on emotional wellbeing when selecting instruments for assessment of HRQoL in the CLP population.Trial registrationNCT04300296.
| S-EPMC10442305 | biostudies-literature