scholarly journals Patient views about the impact of ulcerative colitis and its management with drug treatment and surgery: a nested qualitative study within the CONSTRUCT trial

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Frances Rapport ◽  
Clare Clement ◽  
Anne C. Seagrove ◽  
Laith Alrubaiy ◽  
Hayley A. Hutchings ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Disease Duration ◽  
Qualitative Interview ◽  
Steroid Resistant ◽  
Appropriate Treatment ◽  
Qualitative Interview Study ◽  
The Impact ◽  
Trial Participants ◽  
Prompt Diagnosis

Abstract Background A nested qualitative interview study within the CONSTRUCT trial was conducted to explore experiences and perceptions of patients with acute severe ulcerative colitis following treatment with infliximab or ciclosporin, surgery, or other medication. Methods Two hundred seventy patients with steroid-resistant ulcerative colitis were randomised to either infliximab or ciclosporin. Interviews were conducted with 20 trial participants. Thirty-five data capture events took place in total, 20 interviews conducted 3 months after treatment and a further 15 interviews with the same cohort as second interviews at 12 months. Results Disease duration varied but similar stories emerged about how people adjusted to living with ulcerative colitis. Issues raised by patients included; the debilitating effect of the disease on quality of life, living with the unpredictability of symptoms and treatment, dealing with embarrassment and stigma and the desire to share knowledge of the disease with others to combat the private nature of this debilitating illness and bring greater visibility to patient experience of symptoms and outcomes. Conclusion Patients were more positive about treatment with infliximab than ciclosporin, mainly due to the cumbersome intravenous regimen required for ciclosporin. Prompt diagnosis is required and early reporting of changes in symptoms is encouraged to ensure appropriate treatment. Trial registration This trial is registered with the ISRCTN registry; number ISRCTN22663589. The date of registration was 16/05/2008.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals AB0727 WORK OUTCOMES AND ASSOCIATED FACTORS IN ANKYLOSING SPONDYLITIS PATIENTS IN CHINA

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1658.1-1658
Author(s):  
L. Tu ◽  
Y. Xie ◽  
Q. Lv ◽  
M. Yang ◽  
Z. Liao ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Disease Duration ◽  
Productivity Loss ◽  
Work Productivity ◽  
Work Outcomes ◽  
Activity Impairment ◽  
Factors Associated ◽  
The Impact

Background:Poorer work productivity due to pain and functional impairment is commonly seen in ankylosing spondylitis (AS) patients, which may contribute to huge social economic burden. However, data about work outcomes and associated factors in Chinese AS patients were barely reported.Objectives:To assess work outcomes and identify factors associated with poor work productivity in patients with AS in China.Methods:A cross-sectional study was conducted in China. Adult patients (aged ≥ 18 years) fulfilled the 1984 New York modified criteria of AS were enrolled from rheumatology center from Jan 2017 to Aug 2017. All participants completed questionnaires about socio-demographic characteristics, disease characteristics, quality of life and the Work productivity and activity impairment questionnaire in AS (WPAI:SpA) to accesses the impact of chronic health conditions on job performance and productivity. Factors associated with work outcomes were evaluated.Results:A total of 91 patients with AS were included: 87.8% males, 78.02% employed, mean age and disease duration of 30 and 10 years respectively. The mean (SD) activity impairment of all patients was 48.57% (22.02%). For patients with employed work, mean (SD) absenteeism, presenteeism and work productivity loss were 10.22% (19.44%), 43.86% (22.48%) and 47.92% (25.81%) respectively. In multivariable analysis, activity impairment was associated with Bath Ankylosing Spondylitis Functional Index (BASFI) (P<0.01) and Ankylosing Spondylitis Quality of Life (ASQoL) (P<0.01). Absenteeism was associated with disease duration (P=0.03). Presenteeism was associated with disease duration (P=0.04), BASFI (P<0.01) and ASQoL (P<0.01). Work productivity loss was associated with BASFI (P<0.01) and ASQoL (P<0.01).Conclusion:Longer disease duration, reduced physical function and poorer quality of life are associated with reduced work productivity in Chinese AS patients.References:[1]Boonen A, van der Heijde D, Landewe R, Spoorenberg A, Schouten H, Rutten-van Molken M, et al. Work status and productivity costs due to ankylosing spondylitis: comparison of three European countries. Annals of the rheumatic diseases. 2002;61(5):429-37.[2]Martindale J, Shukla R, Goodacre J. The impact of ankylosing spondylitis/axial spondyloarthritis on work productivity. Best Pract Res Clin Rheumatol. 2015;29(3):512-23.[3]Castillo-Ortiz JD, Ramiro S, Landewe R, van der Heijde D, Dougados M, van den Bosch F, et al. Work Outcome in Patients With Ankylosing Spondylitis: Results From a 12-Year Followup of an International Study. Arthritis Care Res (Hoboken). 2016;68(4):544-52.[4]Sag S, Nas K, Sag MS, Tekeoglu I, Kamanli A. Relationship of work disability between the disease activity, depression and quality of life in patients with ankylosing spondylitis. J Back Musculoskelet Rehabil. 2018;31(3):499-505.[5]Goh Y, Kwan YH, Leung YY, Fong W, Cheung PP. A cross-sectional study on factors associated with poor work outcomes in patients with axial spondyloarthritis in Singapore. Int J Rheum Dis. 2019;22(11):2001-8.Disclosure of Interests:None declared

744 The Impact of Ulcerative Colitis on Quality of Life and Productivity Across Europe: A Burden of Illness Study

2019 ◽  
Vol 114 (1) ◽  
pp. S436-S437
Author(s):  
Jimmy K. Limdi ◽  
Alison Rose ◽  
Declan Noone ◽  
Alan J. Lobo ◽  
Helen Terry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Burden Of Illness ◽  
Illness Study ◽  
The Impact

scholarly journals PTU-127 The impact of surgery on health related quality of life in ulcerative colitis: Abstract PTU-127 Figure 1

Gut ◽  
2012 ◽  
Vol 61 (Suppl 2) ◽  
pp. A237.2-A237 ◽  
Author(s):  
P Swinburn ◽  
H Elwick ◽  
K Bean ◽  
A Curry ◽  
S Patel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals Work Productivity Loss in Inflammatory Bowel Disease Patients in Turkey

2020 ◽  
Vol 2020 ◽  
pp. 1-6 ◽  
Author(s):  
Firdevs Topal ◽  
Hakan Camyar ◽  
Elif Saritas Yuksel ◽  
Suleyman Gunay ◽  
Fatih Topal ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Online Survey ◽  
Productivity Loss ◽  
Young Patients ◽  
Significant Difference ◽  
Inflammatory Bowel ◽  
The Impact

Background. Beyond the medical treatment in inflammatory bowel disease (IBD), there are other issues which influence the quality of life adversely. The aim of this study was to determine the impact of the IBD patients’ illness on working and education life. Method. The participants were invited to participate in the online survey from the Turkish Crohn’s and Ulcerative Colitis Patient Association network. The data was analysed and then discussed to improve the health-related quality of working and education life. Results. One hundred and fifteen patients had ulcerative colitis (UC) (57.2%), and 86 had Crohn’s disease (CD) (42.8%). There was a statistically significant difference in UC between retirement age group 1 (<40 age) and groups 2 (40-49 ages) and 4 (60-65 ages) (p<0.05). There was the same significant difference in CD. Even though the data did not have significant statistical difference, there was clustering around negative perceptions the patients have about their working and education lives. Conclusion. Our survey revealed a very strong causative relationship between work and IBD involving problems before, during, and at the end of employment. Young patients lower their career expectations, and that announces a clear need to support them and improve career guidance.

scholarly journals P759 Correlation of quality-of-life components with sexual function scores and disease duration in patients with inflammatory bowel disease

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S605-S605
Author(s):  
V Domislović ◽  
M Brinar ◽  
L Vujičić ◽  
M Novosel ◽  
D Grgić ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sexual Function ◽  
Erectile Function ◽  
Disease Duration ◽  
Function Score ◽  
Validated Questionnaire ◽  
Inflammatory Bowel ◽  
Male Patients ◽  
The Impact

Abstract Background Inflammatory Bowel Disease (IBD) has a negative impact on quality of life (QOL), and sexuality is one of its major determinants. The impact of disease characteristics on sexuality and intimacy is one of the main concerns of IBD patients. Despite the obvious relevance of this problem, knowledge of the extent and the determinants of sexual dysfunction in persons with IBD is limited. The main goal of the study was to determine the correlation of quality of life (QOL) and it’s components in patients with IBD, and to investigate the impact of disease duration on QOL components. Methods In this cross-sectional study patients fulfilled anonymous validated questionnaire on their sexual function. In International Index of Erectile Function (IIEF) for males, five domains were evaluated through questions on erectile function, orgasmic function, sexual desire, intercourse satisfaction and overall satisfaction. In women were six domains assessed, desire, arousal, lubrication, orgasmic function, satisfaction and pain. For both scores, higher scores indicated a better function. Patients also fulfilled IBDQ-32, a validated questionnaire for assessing quality of life in IBD patients that consists of four main components (social, emotional, systemic and bowel function). Results In this study we have enrolled 202 patients who fulfilled the questionnaire (133 CD, 69 UC). Among them 122 were men and 80 women. Average age of included patients was 39.2 ± 11.02. Prevalence of SD in women was 70% (n = 60) and 18% (n = 22) in males. Female patients with sexual dysfunction had lower emotional and social QOL (p = 0.035 and p = 0.03, respectively). Total male IIEF sexual function score correlated significantly with all of the components of IBDQ; emotional (rho=0.36, p &lt; 0.001) systemic (rho=0.24, p = 0.006), social (rho=0.28, p = 0.002), bowel (rho=0.27, p = 0.002) and with total IBDQ (rho=0.36, p &lt; 0.001). Regarding erectile function score, there was also correlation with all of the components of IBDQ. Total female sexual function FSFI score correlated significantly only with systemic component of IBDQ (rho=0.25, p = 0.02). Interestingly, in male patients disease duration correlate negatively with emotional and social component of IBDQ (rho = −0.21, p = 0.02 and rho=-023, p = 0.01, respectively), which was not the case in female patients. Conclusion The results show correlation of sexual function score with components of QOL, which were more correlated in male patients. Our results suggest that longer disease duration might have positive impact on emotional and social life in male patients, which could be connected with achieving disease control and accepting the disease. It is important to provide proper psychological support, medical treatment and educational information.

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