scholarly journals Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study

2020 ◽  
Vol 2020 ◽  
pp. 1-10
Author(s):  
Alison Rouncefield-Swales ◽  
Bernie Carter ◽  
Lucy Bray ◽  
Lucy Blake ◽  
Stephen Allen ◽  
...  

Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people’s social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of young people with IBD. An online Young Person’s Advisory Group was actively engaged throughout the study. Thirty-one young people participated (n=16 males, n=15 female; n=24 Crohn’s disease, n=6 ulcerative colitis, n=1 IBD-unclassified; the mean age at study was 18.7 years; range 14-25 years). Findings present a metatheme “The importance and meaning of friendships” and three interwoven subthemes of “Sustaining friendships,” “Forming new friendships,” and “Letting go of friendships.” Friendship was important to the young people with IBD, providing support, but associated with challenges such as disclosure. Such challenges could be mitigated by clearer conversations with clinicians about friendships and more extensive conversations about friendships and long-term conditions in education settings.

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S297-S298
Author(s):  
K Kontola ◽  
P Oksanen ◽  
H Huhtala ◽  
H Tunturi-Hihnala ◽  
A Jussila

Abstract Background Finland has one of the highest prevalence of inflammatory bowel disease (IBD), especially UC. There is scarce data about long-term disease outcome in UC in population-based cohorts. The aim was to evaluate the long-term clinical outcome of patients with UC in the region of South Ostrobothnia, a district in rural central western Finland with a population of about 190 000. Methods All patients treated with diagnosis of UC or IBDU (inflammatory bowel disease Unclassified) during years 1981–2000 were included in this study. Data were collected retrospectively from the patient registry of the Central Hospital of South Ostrobothnia until 1 August 2019. Results There were 589 patients with a median follow-up time of 25 years. Median age at the diagnosis was 34 years. 59% of patients were male, 93% had UC and 7% IBDU. According to Montreal classification 80% had extensive disease, 15% left-sided disease and 5% proctitis. Medical treatment used at any point during the disease is shown in Table 1. Twenty-two per cent of patients had colectomy. Of operated patients, (pan)proctocolectomy with ileostomy was performed to 50%, IPAA (ileal pouch anal anastomosis) to 40% and IRA (ileorectal anastomosis) to 3%. Median time from the diagnosis to surgery was 11 years; the risk of surgery is shown in Table 2. Twenty-six per cent of the operations were emergency surgeries. The mean age at the time of surgery was 49 years. The indications for colectomy are specified in Table 3. Cumulative risk of colorectal cancer (CRC) and biliary tract cancer was 3.2% and 1.7%, respectively. Twenty-eight per cent of patients died during follow-up, at the mean age of 72 years. The cause of death was recorded for 91/167 and the most common causes were cardiovascular disease and malignancy. Conclusion In this population-based cohort with surveillance of 25 years 22% patients with UC or IBDU were operated. Even after becoming available, biological medication is rarely used for UC patients diagnosed in the prebiologic era.


2019 ◽  
Vol 25 (1) ◽  
pp. 57-63 ◽  
Author(s):  
Clara Yzet ◽  
Stacy S. Tse ◽  
Maia Kayal ◽  
Robert Hirten ◽  
Jean-Frédéric Colombel

The emergence of biologic therapies has revolutionized the management of inflammatory bowel disease (IBD) by halting disease progression, increasing remission rates and improving long-term clinical outcomes. Despite these well-described benefits, many patients are reluctant to commence therapy due to drug safety concerns. Adverse events can be detected at each stage of drug development and during the post-marketing period. In this article, we review how to best assess the safety parameters of new IBD medications, from the earliest stage of development to population-based registries, with a focus on the special populations often excluded from the evaluation process.


Author(s):  
Stefanie Howaldt ◽  
Eugeni Domènech ◽  
Nicholas Martinez ◽  
Carsten Schmidt ◽  
Bernd Bokemeyer

Abstract Background Iron-deficiency anemia is common in inflammatory bowel disease, requiring oral or intravenous iron replacement therapy. Treatment with standard oral irons is limited by poor absorption and gastrointestinal toxicity. Ferric maltol is an oral iron designed for improved absorption and tolerability. Methods In this open-label, phase 3b trial (EudraCT 2015-002496-26 and NCT02680756), adults with nonseverely active inflammatory bowel disease and iron-deficiency anemia (hemoglobin, 8.0-11.0/12.0 g/dL [women/men]; ferritin, <30 ng/mL/<100 ng/mL with transferrin saturation <20%) were randomized to oral ferric maltol 30 mg twice daily or intravenous ferric carboxymaltose given according to each center’s standard practice. The primary endpoint was a hemoglobin responder rate (≥2 g/dL increase or normalization) at week 12, with a 20% noninferiority limit in the intent-to-treat and per-protocol populations. Results For the intent-to-treat (ferric maltol, n = 125/ferric carboxymaltose, n = 125) and per-protocol (n = 78/88) analyses, week 12 responder rates were 67% and 68%, respectively, for ferric maltol vs 84% and 85%, respectively, for ferric carboxymaltose. As the confidence intervals crossed the noninferiority margin, the primary endpoint was not met. Mean hemoglobin increases at weeks 12, 24, and 52 were 2.5 vs 3.0 g/dL, 2.9 vs 2.8 g/dL, and 2.7 vs 2.8 g/dL with ferric maltol vs ferric carboxymaltose. Treatment-emergent adverse events occurred in 59% and 36% of patients, respectively, and resulted in treatment discontinuation in 10% and 3% of patients, respectively. Conclusions Ferric maltol achieved clinically relevant increases in hemoglobin but did not show noninferiority vs ferric carboxymaltose at week 12. Both treatments had comparable long-term effectiveness for hemoglobin and ferritin over 52 weeks and were well tolerated.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1188.1-1188
Author(s):  
C. Daldoul ◽  
N. El Amri ◽  
K. Baccouche ◽  
H. Zeglaoui ◽  
E. Bouajina

Background:Inflammatory bowel disease (IBD), including ulcerative colitis (UC) and Crohn’s disease (CD), is considered as a risk factor of low bone mineral density (BMD). In fact, the prevalence of osteoporosis ranges from 17% to 41% in IBD patients. The possible contributing factors may include malabsorption, glucocorticoid treatment and coexisting comorbiditiesObjectives:The purpose of our work was to determine the frequency and the determinants of osteoporosis in patients with IBD and to assess whether there is a difference in BMD status between UC and CD.Methods:This is a retrospective study, over a period of 5 years (from January 2014 to December 2018) and including patients followed for IBD who had a measurement of BMD by DEXA. Clinical, anthropometric and densitometric data (BMD at the femoral and vertebral site) were recorded. The WHO criteria for the definition of osteoporosis and osteopenia were applied.Results:One hundred and five patients were collected; among them 45 were men and 60 were women. The average age was 45.89 years old. The average body mass index (BMI) was 25.81 kg/m2 [16.44-44.15]. CD and UC were diagnosed in respectively 57.1% and 42.9%. A personal history of fragility fracture was noted in 4.8%. Hypothyroidism was associated in one case. Early menopause was recorded in 7.6%. 46.8% patients were treated with corticosteroids. The mean BMD at the vertebral site was 1.023 g/cm3 [0.569-1.489 g/cm3]. Mean BMD at the femoral site was 0.920g/cm3 [0.553-1.286g / cm3]. The mean T-score at the femoral site and the vertebral site were -1.04 SD and -1.27 SD, respectively. Osteoporosis was found in 25.7% and osteopenia in 37.1%. Osteoporosis among CD and UC patients was found in respectively 63% and 37%. The age of the osteoporotic patients was significantly higher compared to those who were not osteoporotic (52.23 vs 43.67 years, p = 0.01). We found a significantly higher percentage of osteoporosis among men compared to women (35.6% vs 18.3%, p=0.046). The BMI was significantly lower in the osteoporotic patients (23.87 vs 26.48 kg/m2, p=0.035) and we found a significant correlation between BMI and BMD at the femoral site (p=0.01). No increase in the frequency of osteoporosis was noted in patients treated with corticosteroids (27.9% vs 21.6%, p=0.479). Comparing the UC and CD patients, no difference was found in baseline characteristics, use of steroids or history of fracture. No statistically significant difference was found between UC and CD patients for osteoporosis(p=0.478), BMD at the femoral site (p=0.529) and at the vertebral site (p=0.568).Conclusion:Osteoporosis was found in 25.7% of IBD patients without any difference between CD and UC. This decline does not seem to be related to the treatment with corticosteroids but rather to the disease itself. Hence the interest of an early screening of this silent disease.Disclosure of Interests:None declared


2015 ◽  
Vol 148 (4) ◽  
pp. S-463
Author(s):  
Ioannis E. Koutroubakis ◽  
Claudia Ramos Rivers ◽  
Miguel Regueiro ◽  
Efstratios Koutroumpakis ◽  
Benjamin H. Click ◽  
...  

2009 ◽  
Vol 136 (5) ◽  
pp. A-663 ◽  
Author(s):  
Alessandro Armuzzi ◽  
Fabio De Vincentis ◽  
Manuela Marzo ◽  
Giammarco Mocci ◽  
Carla Felice ◽  
...  

2017 ◽  
Vol 152 (5) ◽  
pp. S391 ◽  
Author(s):  
Eve Sedillot-Daniel ◽  
Audrey Désilets ◽  
Alexandra Verreault ◽  
France Gervais ◽  
Colette Deslandres ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document