P523 Survey to identify patient characteristics, treatment preferences and impact of inflammatory bowel disease (IBD) on quality of life across 7 countries in Europe

Abstract Background The treatment paradigm for inflammatory bowel disease (IBD) is becoming increasingly diverse and complex. It is suggested that engaging patients through shared decision-making optimises treatment selection in line with clinical need and patient preference and expectations. This patient survey aimed to explore patients’ preferences towards attributes of currently available advanced therapies for IBD as well as the impact of IBD on patients’ quality of life (QoL) across 7 countries in Europe. The demographic profile of the study cohort and findings on the patient-rated impact of IBD on QoL are reported here. Methods An online, cross-sectional survey (October 2020 to January 2021) enrolling adults aged ≥18 years who self-reported having and being previously/currently treated for Crohn’s disease (CD) or ulcerative colitis (UC) was conducted across Europe (France, the UK, Spain, Italy, Belgium, Switzerland and the Netherlands). Patient perspectives on IBD care and preferences regarding specific attributes of existing treatment options were explored using the Carenity platform and via partnerships with local organisations. This descriptive analysis evaluated the demographic and clinical profile of respondents, treatment management and impact on QoL. Results Overall, 686 patients (CD: 360; UC: 326) across 7 countries completed the survey. Among CD and UC patients, respectively, 71.9% and 57.7% were females; mean age (range) was 48.0 (19.0–77.0) and 50.0 (19.0–82.0) years; and mean disease duration (range) was 13.6 (0.2–49.1) and 11.0 (0.1–68.7) years. Overall, 37.5% of CD patients reported fistulising CD, and 9.4% (CD) and 10.1% (UC) of patients had a stoma or pouch; 76.7% (CD) and 78.5% (UC) of patients were being treated for IBD. Approximately 50.0% of patients with IBD were full-time or part-time employed at the time of survey. Abdominal pain, fatigue, and stool frequency were ranked by 83%, 79%, and 73% patients with CD, respectively, as the symptoms most impacting QoL; 79%, 71%, and 61% patients ranked energy status, general well-being and daily activities, respectively, as the most impacted aspects. Abdominal pain, stool frequency and fatigue were ranked by 73%, 72% and 67% patients with UC, respectively, as the symptoms most impacting QoL; the most impacted aspects were similar to those of patients with CD. Patients in both groups prioritised general well-being, energy status and daily activities as aspects for improvement through treatment. Conclusion This large European survey highlights the most impactful symptoms and QoL aspects from the patient perspective. These findings can support clinical decision-making and treatment strategies to improve treatment outcomes and patient QoL.

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P248 Assessment of health-related quality of life of paediatric Inflammatory Bowel Disease patients through the IMPACT-III questionnaire

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.374 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S289-S289

Author(s):

J A Vázquez Gómez ◽

M Velasco Rodríguez-Belvís ◽

L M Palomino Pérez ◽

P Sánchez Llorente ◽

C Aguilar Ladrón de Guevara ◽

...

Keyword(s):

Quality Of Life ◽

Inflammatory Bowel Disease ◽

Body Image ◽

Well Being ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Health-related quality of life (HRQOL) is a multi-dimensional concept used to examine the impact of health status on their global well-being. The IMPACT-III is a 35-item questionnaire specifically designed to evaluate the quality of life of patients with paediatric Inflammatory Bowel Disease (pIBD). This questionnaire had its origin in 1999 in Canada (Otley et al.) and, since then, it has been adapted to many languages. The objective of this study was to assess the quality of life of pIBD patients using the IMPACT-III questionnaire and to identify specific needs according to the patient’s profile. Methods An observational, descriptive, and retrospective study was carried out in November 2020, including the pIBD patients undergoing follow-up in a tertiary hospital that have previously completed the IMPACT-III questionnaire. Epidemiological and clinical data were anonymously retrieved from the electronic medical records. We established three blocks of IMPACT-III items according to physical, emotional and social well-being, or to the perception of body image. The results of each block and totals were compared according to gender, age, diagnosis, time of evolution, activity and treatment. To make the comparison, the Mann-Whitney U test for independent samples for 2 groups and the Kruskal-Wallis test for 3 or more independent groups were used. The statistical analysis was performed using SPSS software and the results were considered statistically significant when reaching a bilateral critical level (p) ≤ 0.05, with a 95% confidence interval. Results We included a total of 40 patients. There were no significant differences according to gender, type of IBD or type of treatment. The group of adolescents obtained a higher score in the body image block (p = 0.009). Patients with over two years of evolution of the disease obtained statistically significantly higher scores in the physical well-being block (p = 0.027). In patients who filled out the questionnaire during a flare, the scores on questions of physical well-being (p = 0.007), emotional and social (p = 0.037), as well as total (p = 0.012) were significantly higher. Overall, 31 patients (77.5%) answered that IBD had negatively affected their family. Conclusion Our data suggest that patients with a longer evolution time, adolescents and patients suffering an active flare seem to report a worst HRQOL. Patients with the mentioned characteristics constitute a vulnerable population with special care needs that should be addressed from an interdisciplinary point of view. Despite the limitations of the retrospective design and the scarce number of patients, our results indicate that family-centered care should be a priority.

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Abdominal Pain and Health Related Quality of Life in Pediatric Inflammatory Bowel Disease

Journal of Pediatric Psychology ◽

10.1093/jpepsy/jss097 ◽

2012 ◽

Vol 38 (1) ◽

pp. 63-71 ◽

Cited By ~ 21

Author(s):

Rachel Neff Greenley ◽

Jennifer Hauser Kunz ◽

Jennifer Verrill Schurman ◽

Erica Swanson

Keyword(s):

Quality Of Life ◽

Inflammatory Bowel Disease ◽

Abdominal Pain ◽

Bowel Disease ◽

Health Related Quality ◽

Pediatric Inflammatory Bowel Disease ◽

Related Quality ◽

Health Related ◽

Inflammatory Bowel

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Application of Polymeric Nano-Materials in Management of Inflammatory Bowel Disease

Current Topics in Medicinal Chemistry ◽

10.2174/1568026620666200320113322 ◽

2020 ◽

Vol 20 (11) ◽

pp. 982-1008

Author(s):

Prasad Minakshi ◽

Rajesh Kumar ◽

Mayukh Ghosh ◽

Basanti Brar ◽

Manju Barnela ◽

...

Keyword(s):

Quality Of Life ◽

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Well Being ◽

Physical Growth ◽

Nano Materials ◽

Disease Occurrence ◽

Group Population ◽

Inflammatory Bowel

Inflammatory Bowel Disease (IBD) is an umbrella term used to describe disorders that involve Crohn’s disease (CD), ulcerative colitis (UC) and pouchitis. The disease occurrence is more prevalent in the working group population which not only hampers the well being of an individual but also has negative economical impact on society. The current drug regime used therapy is very costly owing to the chronic nature of the disease leading to several side effects. The condition gets more aggravated due to the lower concentration of drug at the desired site. Therefore, in the present scenario, a therapy is needed which can maximize efficacy, adhere to quality of life, minimize toxicity and doses, be helpful in maintaining and stimulating physical growth of mucosa with minimum disease complications. In this aspect, nanotechnology intervention is one promising field as it can act as a carrier to reduce toxicity, doses and frequency which in turn help in faster recovery. Moreover, nanomedicine and nanodiagnostic techniques will further open a new window for treatment in understanding pathogenesis along with better diagnosis which is poorly understood till now. Therefore the present review is more focused on recent advancements in IBD in the application of nanotechnology.

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N09 Sexuality as lived incompleteness: exploring intimacy and sexuality experiences of people living with inflammatory bowel disease

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab074.823 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S612-S613

Author(s):

S Fourie ◽

C Norton ◽

D Jackson ◽

W Czuber-Dochan

Keyword(s):

Quality Of Life ◽

Inflammatory Bowel Disease ◽

Thematic Analysis ◽

Bowel Disease ◽

Healthcare Professionals ◽

Phenomenological Study ◽

Well Being ◽

Negative Effects ◽

Inflammatory Bowel

Abstract Background Sexual function in those living with Inflammatory Bowel Disease (IBD) is known to be affected by their condition, with impact on their psychosocial well-being. Little is known about the causality of low sexual functions scores and their contribution to low quality of life reports. The aim of this study was to explore how intimacy and sexuality is experienced in the context of IBD. Methods This was a phenomenological study guided by van Manen’s methodology. Data were collected from 43 participants from interviews and narrative accounts submitted via Google Forms. Reflection on four existential domains (body, relationships, space and time) and thematic analysis were used to interpret the data. Results Four themes were generated from data analysis: Otherness of the sick body, Interrupted connectedness, Missing out on life fullness and Fragmented openness. These led to the overarching theme Sexuality as lived incompleteness, which reflected the essence of the experiences described by participants. Their experiences were deeply embedded in everyday life, and the IBD posed an obstacle to intimacy and sexuality, negatively affecting their life, relationships, family planning and their social position, imposing limitations and isolation. Conclusion IBD has a significant impact on sexual well-being with negative effects on overall quality of life, which may be unknown to healthcare professionals, therefore remain unaddressed. A better understanding of the potential issues could help healthcare professionals identify and address concerns and worries related to sexual well-being, and approach them in a reflective, holistic manner in situations arising in practice.

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Short Health Scale: a Valid and Reliable Quality of Life Scale for Chinese Patients With Inflammatory Bowel Disease

10.21203/rs.3.rs-380504/v1 ◽

2021 ◽

Author(s):

Jiang-tao Hou ◽

Bin Peng ◽

Shi-jing Zhang ◽

Yong-xin Luo ◽

Yi-ming Chen ◽

...

Keyword(s):

Quality Of Life ◽

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Correlation Coefficients ◽

Well Being ◽

Chinese Version ◽

Chinese Patients ◽

Quality Of Life Scale ◽

Inflammatory Bowel

Abstract Background: The aim of our study was to translate and validate the Chinese version of the Short Health Scale (SHS), a disease-specific quality of life (QoL) scale for the patients with inflammatory bowel disease (IBD).Methods: The SHS was translated and validated according to the standard process: a translation and back-translation procedure, culture adaptation and a validation study. Patients with IBD were enrolled, and their QoL were assessed using the SHS and the short inflammatory bowel disease questionnaire (SIBDQ). Reliability (internal consistency reliability, split-half reliability and test-retest reliability) and validity (content validity, construct validity, criterion validity and discriminant validity) analysis were performed to evaluate the psychometric characteristics of the SHS.Results: A total of 95 patients with IBD (62 ulcerative colitis and 33 Crohn’s disease) completed the Chinese version of the SHS, and 40 patients completed the SHS within 1-4 weeks once again. Cronbach's alpha value of the SHS was 0.91, and its split-half coefficient was 0.83. Intraclass correlation coefficients of four items ranged from 0.55 to 0.75. All four items of the SHS were significantly associated with the corresponding domains of the SIBDQ, with correlation coefficients ranging from -0.47 to -0.63 (P < 0.001). Exploratory factor analysis showed that the cumulative contribution rate of variance reached 68%, and the factor loading of all the items were greater than 0.8. The scores of four items were significantly different for the patients of different Bristol stool form scale (P < 0.001). The scores of function, worry and general well-being were significantly different among the patients with different smoking status (P < 0.05).Conclusions: The SHS is a simple and quick scale. The SHS had good validity and reliability, and was suitable to evaluate the QoL of patients with IBD in Chinese.

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