P435 The impact of perianal fistula in Crohn’s disease on quality of life: results of a patient survey conducted in Europe

Abstract Background Perianal fistulas (PAF) in Crohn’s disease (CD) may impair social performance, sexual function, life activities and overall patients’ quality of life (QoL). Patient experience is important in the treatment decision making and in providing adequate support. Despite the clinical relevance, few studies have addressed the patient perspective on the impact of PAF and complex PAF (CPAF) in CD on QoL. Methods A questionnaire assessing the impact of PAF on QoL was developed by patient representatives and medical experts addressing diagnosis, symptoms and QoL including close relationships, social life, sexual activity and working life. CD patients with and without PAF were invited to participate. The self-selective anonymous survey was available in 11 languages and accessible on the European Federation of Crohn’s & Ulcerative Colitis Associations’ (EFCCA) website and national inflammatory bowel disease patient association websites from 15 July to 31 December 2019. Results Of 820 respondents with CD (67.2% women; mean age 40.8 years), 532 (64.9%) reported PAF in CD of which 272 (51.1%) reported CPAF. PAF/CPAF patients had experienced and were currently experiencing more anal pain and perianal leaking than CD patients (Figure). On a 10-point scale, PAF/CPAF patients reported a greater impact on overall QoL (6.91 vs 6.18, p<0.001), relationships with family and friends (5.54 vs 4.78, p<0.001), relationship with partner (5.24 vs 4.11, p<0.001), social life (5.65 vs 4.97, p=0.001) and working life (5.54 vs 5.12, p=0.02) than CD patients. PAF/CPAF patients reported feeling more unhygienic, uncomfortable, and guilty about their condition toward family and friends than CD patients. They also found it more difficult to talk with family and close friends about their condition. PAF/CPAF patients avoided having sex, ended relationships, had arguments with partner, felt inadequate to partner, avoided dating and had their partner refuse having sex more often than CD patients. Furthermore, these patients were unable to play sports, carried a personal hygiene kit, were aware of access to clean toilets, and had changed profession/career due to their condition more often (Figure). Conclusion From the patients’ perspective, PAF/CPAF in CD severely impacts patients’ overall QoL, social and sexual relationships and work life. These results are important to consider when tailoring treatment strategy and patient services in a multidisciplinary way to address individual patient needs.

Download Full-text

P042 Patient perspective on the impact of complex perianal fistulas in Crohn’s disease on quality of life: introducing the concept of the patient survey conducted in Europe

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.171 ◽

2020 ◽

Vol 14 (Supplement_1) ◽

pp. S154-S154

Author(s):

A Spinelli ◽

S Lönnfors ◽

L Avedano ◽

D Bojic

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Social Life ◽

Patient Perspective ◽

Control Group ◽

Rectal Pain ◽

Perianal Fistulae ◽

The Impact

Abstract Background Perianal involvement in Crohn’s disease (CD), including fistulas, ulcers, abscesses, strictures and cancer, can lead to a significant, occasionally debilitating impairment in the patients‘ short- and long-term quality of life (QoL). Perianal fistulae can cause symptoms such as leakage, rectal pain, swelling, pain with bowel movements, and fever, which may significantly affect a patient’s social performance, sexual function and normal life activities. Fistulae are a relatively common CD complication: around 35% of CD patients have at least one fistula, while the majority of CD fistulas are complex. Still, few studies have assessed the impact of complex perianal fistulae (CPF) on the QoL of CD patients from the patient perspective. Methods A questionnaire assessing the effect of CPF on the QoL of CD patients was developed by patient representatives and medical experts. It consisted of 43 questions about history and activity of CD and CPF, treatment experiences, self-reported level of being informed about the disease, past and current symptoms, self-reported impact on QoL, emotions related to the disease, impact and restrictions on close relationships and social life, sexual activity, professional life and work absence. The survey was launched online on the European Federation of Crohn’s and ulcerative colitis Associations (EFCCA) website on July 15, 2019 (remains open until December 2019) and shared to national patient associations through the EFCCA network. Both CD patients with and without CPF were invited to participate in order to have a control group of patients for data analysis. The self-selective, anonymous survey was offered in English, French, German, Greek, Hebrew, Italian, Polish, Portuguese, Romanian, Spanish and Slovenian. Results On November 20, 2019, there were 788 responses from CD patients with and without CPF. There may have been selection bias as the survey is self-selective, only available online and in a limited amount of languages. Considering the retrospective aspect of some questions, recall bias may also have affected some of the responses. Regardless, the data collected will allow a comparison between CD patients with and without CPF, and between patients in different countries, in important, patient-relevant QoL aspects. Conclusion The collected data will be analysed in early 2020. The results will provide valuable insights into the often unspoken burden in the life of CD patients with CPF and potentially help in making treatment decisions for CD patients suffering from CPF.

Download Full-text

The impact of biological interventions on health-related quality of life in adults with Crohn's disease

Cochrane Database of Systematic Reviews ◽

10.1002/14651858.cd012973 ◽

2018 ◽

Author(s):

Mirjana Stanic Benic ◽

Vanja Giljaca ◽

Vera Vlahovic-Palcevski

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Download Full-text

The impact of surgery on health related quality of life in Crohn's disease

Gastroenterology ◽

10.1016/s0016-5085(98)84173-5 ◽

1998 ◽

Vol 114 ◽

pp. A1026

Author(s):

J. López Vivancos ◽

F. Casellas ◽

X. Badía ◽

J. Vilaseca ◽

J-R. Malagelada

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Download Full-text

The Impact of Cholecystectomy on Long-Term Disease Outcomes and Quality of Life in Patients with Crohn’s Disease

Inflammatory Bowel Diseases ◽

10.1093/ibd/izaa076 ◽

2020 ◽

Author(s):

Filippos Koutroumpakis ◽

Maham Lodhi ◽

Maaz Ahsan ◽

Claudia Ramos Rivers ◽

Marc Schwartz ◽

...

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Disease Activity ◽

Hospital Admissions ◽

Tertiary Center ◽

Prospective Longitudinal ◽

The Impact

Abstract Background Cholecystectomy (CCY) is one of the most frequently performed abdominal surgeries. However, the impact of CCY in clinical settings with altered gastrointestinal physiology and anatomy, such as Crohn’s disease (CD), has not been fully characterized. We sought to investigate clinical outcomes, disease severity, and quality of life of CD patients after CCY. Methods We utilized a prospective, longitudinal registry of consented CD patients followed at a tertiary center. Crohn’s disease patients that had or had not undergone CCY formed the 2 study groups. The absence or presence of gallbladder was confirmed with abdominal CT scans obtained during routine care. Multiyear clinical, biochemical, and histologic data were collected and analyzed. Results Among 834 CD patients, 151 (18%) had undergone CCY. History of CCY was associated with higher disease activity (median Harvey-Bradshaw index; P < 0.001), more years with anemia (P = 0.048), lower albumin (P = 0.001), worse quality of life (mean Short Inflammatory Bowel Disease Questionnaire; P < 0.001), chronic abdominal pain (P < 0.001), higher risk for incident colonic dysplasia (P = 0.011), higher rates of annual hospital admissions (P = 0.004), and opioid use (P < 0.001). In multivariate analysis, CCY remained associated with higher disease activity (P < 0.001), lower albumin (P = 0.008), lower quality of life (P < 0.001), and more hospital admissions (P = 0.008), whereas CD patients with diseased ileum had higher risk for colonic dysplasia (P = 0.031). Conclusions CCY in CD patients was associated with multiple markers of disease activity and worse quality of life during multiyear follow up. This data suggests that CCY in CD patients may adversely impact the long-term clinical course.

Download Full-text

The Ultimate Therapeutic Goal: Establishing and Maintaining Quality of Life

Canadian Journal of Gastroenterology ◽

10.1155/2004/569262 ◽

2004 ◽

Vol 18 (7) ◽

pp. 465-466

Author(s):

Remo Panaccione

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Activity Index ◽

Disease Activity Index ◽

Related Quality ◽

Disease Study ◽

National Cooperative ◽

The Impact

Outcomes in Crohn's disease clinical trials are traditionally reported in terms of remission and response rates according to the Crohn's Disease Activity Index (CDAI), which was developed as part of the National Cooperative Crohn's Disease Study (1). However, it has been argued that the CDAI does not measure the overall burden of the illness experienced by patients. An alternative is to assess the impact of a particular therapy on health-related quality of life (HRQL). HRQL not only measures the benefits of the therapy on disease symptoms but also is probably better at evaluating the trade-off between therapeutic efficacy and potential adverse effects.

Download Full-text

A Crohn’s Disease Patient with Extraintestinal Manifestations: A Case Report

The Indonesian Journal of Gastroenterology Hepatology and Digestive Endoscopy ◽

10.24871/2232021254-260 ◽

2022 ◽

Vol 22 (3) ◽

pp. 254-260

Author(s):

Yhan Batista ◽

Herry Purbayu

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Disease Patient ◽

Clinical Judgement ◽

Extraintestinal Manifestations ◽

History Taking ◽

Diagnostic Modalities ◽

Gold Standards

Crohn’s disease (CD) is a chronic debilitating inflammatory disease which mostly affect gastrointestinal tract, but due to its unique features, CD enables to affect extraintestinal organs. Pathophysiology of extraintestinal manifestations is still debatable as many experts propose immune-related hypotheses. It is still unpredictable which manifestation precedes another as studies ongoing. Diagnosing CD is difficult since no gold standards available, therefore clinicians must combine history taking, diagnostic modalities, and a good clinical judgement to diagnose CD. Treatment for CD is not only to treat disease activity, but also to prevent complications to preserve patients’ quality of life.

Download Full-text

Surgery-Related Quality of Life of Pediatric Patients With Crohn's Disease

Frontiers in Pediatrics ◽

10.3389/fped.2020.608370 ◽

2020 ◽

Vol 8 ◽

Author(s):

Valeria Dipasquale ◽

Enrica Antonelli ◽

Laura Cannavò ◽

Giorgio Cavatoi ◽

Carmelo Romeo ◽

...

Keyword(s):

Quality Of Life ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Pediatric Patients ◽

University Hospital ◽

Ileocecal Resection ◽

Severe Problem ◽

Related Quality ◽

The Impact

Objective: Up to 30% of pediatric patients with Crohn's disease (CD) require surgery. The aim of the study was to evaluate long-term health-related quality of life (HRQoL) outcome in children with CD who have had ileocolonic resection.Materials and methods: This was a retrospective cross-sectional study on all pediatric patients who had undergone surgery for CD between January 2015 and December 2017 in the Pediatric Surgery and Gastroenterology Units of the University Hospital of Messina. Surgical treatment was represented by laparoscopic ileocecal resection with latero-lateral anastomosis. Patients were asked to fill in a modified version of the IMPACT III questionnaire made up of 15 closed questions before and after surgery. The questionnaire was scored on a five-point scale with 5 reporting “not a problem” and 1 “a very severe problem.” The total score ranged from 15 (worst HRQoL) to 75 (best HRQoL). Frequency of relapses, reoperations, complications during follow-up, and postoperative bowel function were also studied.Results: Data were obtained in 10 patients (9 males), who underwent surgery at a median age of 13.5 years (range 13–18), after a median post-diagnosis period of 2.5 years (range 0–8). Preoperative scores were low in all 4 domains of the questionnaire. Postoperatively, HRQoL measures improved significantly (p < 0.05) about symptoms, school attendance, social and emotional functioning. Overall, nearly all patients were completely satisfied with the surgical outcome.Conclusions: HRQoL is low in CD children referred for possible operation, and surgery may positively affect the overall HRQoL. Collecting HRQoL data provides insight into the impact of treatment on children health status.

Download Full-text