BURDEN OF UC

Patients with UC face a substantial burden

People living with inflammatory bowel disease (IBD) have significantly reduced health-related quality of life (QoL) compared with the general population.1

The impact of ulcerative colitis (UC) on QoL is multifaceted. It often affects individuals at a time in their lives when they are pursuing employment, building families and reaching key milestones.2


The burden of UC can be physical, financial and psychological2


There is a high psychosocial burden on patients with UC during the course of their disease.3


“It’s a beautiful day at a park, but here I am, with my wife and my sons, desperately wishing I stayed at home…”

“It’s a beautiful day at a park, but here I am, with my wife and my sons, desperately wishing I stayed at home…”

“The symptoms are about as humiliating as they come: crippling pain and diarrhoea full of blood…”

“The symptoms are about as humiliating as they come: crippling pain and diarrhoea full of blood…”

“I was too embarrassed to see my doctor…thoughts of an embarrassing procedure, having to do a stool test, all of that was dampening my desire to seek answers for my condition…”

“I was too embarrassed to see my doctor…thoughts of an embarrassing procedure, having to do a stool test, all of that was dampening my desire to seek answers for my condition…”

“I am constantly fearful that I will have a flare-up, be hospitalised, or even worse, soil myself in public…”

“I am constantly fearful that I will have a flare-up, be hospitalised, or even worse, soil myself in public…”

“I was depressed. I had to quit my job and for the first time since I’d been diagnosed, I started to seriously worry that my wife might leave me…”

“I was depressed. I had to quit my job and for the first time since I’d been diagnosed, I started to seriously worry that my wife might leave me…”


Although the images above are stock images, the statements belong to real patients.



Looking beyond the symptoms of UC

Debilitating symptoms and the psychological stress associated with UC impede a patient’s normal life pursuits.Disease activity and psychological distress have been shown to significantly impair the QoL of individuals living with UC.1

 

The impact of UC on the personal lives of patients

72% have problems with sleep4,*,†

43% have depressive feelings4,*,†

38% have anxious feelings4,*,†

29%  have problems participating in the community4,*

25% have problems with personal relationships4,*

21% have impairments in sexual function,5 with 31% of men and 80% of women with IBD reporting low or no interest in sex6

29% admit to self-medicating with oral steroids7

The impact of UC on the professional lives of patients

Up to 98% experience absenteeism (up to 60 days per patient year)8

47% report that UC influenced their career choice9,‡

50% are unemployed5

20% have rejected a job9

19%  are receiving a disability pension5



Patients report self-medication with steroids due to suspected clinical worsening and fear of hospitalisation or need for sick leave.7


Psychological interventions and effective medical therapy have demonstrated a positive impact on QoL.1


* Data from 424 Dutch patients with UC who completed the IBD disability index (IBD-DI) after 2 years of follow-up. The IBD-DI has been reported to be reliable, reproducible, and sensitive for detecting disability.4

† Percentage estimated from graphic data, ±1%.

‡ Data from the UC-LIFE survey to assess patients’ perception of the impact of UC on their lives, conducted in 38 outpatient clinics in Spain. Survey response rate was 74.5% (436/585 patients with UC).9



Professor Charlie Lees, speaking at the Galapagos UK symposium at BSG Campus, 25 January 2021, Virtual.

“For an individual patient, something that we need to refocus our attention on even more, is the symptomatology. And it's not just pain and diarrhoea, nausea and vomiting, and weight loss. It's urgency. It's incontinence. It is fatigue. It is stress. It is low mood with anxiety and depression, as really important factors.

One of the things that we will learn a lot about in the next five years is resilience. These positive psychological interventions that we can make to improve the way someone's behaviours allow them to cope with a chronic illness such as Crohn's disease or ulcerative colitis.”



References:

  1. Jones JL, Nguyen GC, Benchimol EI, et al. J Can Assoc Gastroenterol. 2019;2(Suppl 1):S42–S48.
  2. Benchimol EI, Bernstein CN, Bitton A, et al. J Can Assoc Gastroenterol. 2019;2(Suppl 1):S1–S5.
  3. Bokemeyer B, Hardt J, Hüppe D, et al. J Crohns Colitis. 2013;7(5):355–368.
  4. van der Have M, Fidder HH, Leenders M, et al. Inflamm Bowel Dis. 2015;21(2):369–377.
  5. Danese S, Allez M, van Bodegraven AA, et al. Dig Dis. 2019;37(4):266–283.
  6. Taft TH, Ballou S, Bedell A, Lincenberg D. Gastroenterol Clin North Am. 2017;46(4):847–858.
  7. Bernal I, Domènech E, Garcia-Planella E, et al. Dig Dis Sci. 2006;51(12):2165–2169.
  8. Constantin J, Atanasov P, Wirth D, Borsi A. BMC Gastroenterol. 2019;19(1):179.
  9. Calvet X, Argüelles-Arias F, López-Sanromán A, et al. Patient Prefer Adherence. 2018;12:1815–1823.