Quality of Life Survey

Overview

Results

• 93% of respondents were the only member of their household with CD, with 7% sharing the household with at least 1 other person with CD
• 28% (220/777)= male and 72% (557/777)= female
• 12% were <18 years of age and 10% were 65 years plus
• On average, respondents were 41.3 years at diagnosis
• Mean age for those diagnosed pre 2000 was 39 versus 44 post 2000 (Significant difference of 5 years). Most common symptoms reported were: abdominal pain/bloating (71%), diarrhoea (70%), anaemia (65%), chronic fatigue (62%) and weight loss (61%). 78% of respondents reported at least 4 symptoms and only 1% reported no symptoms pre diagnosis
• Average duration of any symptoms before diagnosis across the whole sample was 13.2 years. Mean duration of specific symptoms include constipation at 12.6 years and weight loss at 5.5 years. Duration of symptoms in those diagnosed before and after 2000 was 14.5 and 12 years respectively
• 655 respondents (83%) provided information on the number of GP visits pre-diagnosis. On average individuals consulted their GP 13 times with symptoms prior to being diagnosed. The average number of pre-diagnosis GP visits was 7 amongst those diagnosed post 2000 compared with 17.4 amongst those diagnosed before 2000 (when adjusted for age of respondent and duration of symptoms the difference remained significant)
• The proportion of respondents with no problems in the 5 dimensions assessed with the EQ-5D (5 dimensions: mobility, self-care, usual activities, pain, anxiety/depression) was significantly higher at the time of survey compared to pre diagnosis. In particular, there was a pronounced difference in the ‘Pain Dimension’ with 60% reporting no problems at the time of survey compared with only 22% pre diagnosis. Across all 5 dimensions, the proportion of respondents reporting no problems pre diagnosis was lower than in the general population, but at the time of survey was similar or higher than in the general population
• On a visual analogue scale, respondents rated their health at 47% pre diagnosis (0=worst imaginable state and 100=best imaginable state) and at 79% now, a highly significant improvement of 32 percentage points
• However, there was no clear evidence that levels of health reported by respondents before and after diagnosis were related to duration of symptoms
• All age groups reported a significant improvement in QOL at the time of survey compared to pre diagnosis

Discussion

• QOL of people with undiagnosed symptomatic CD is substantially reduced compared to the general population, and increases markedly post diagnosis
• The difference is quantitatively similar to the QOL impact of severe events such as stroke. (0.56 prior to diagnosis (where 0=death and 1= full health) to 0.84 at the time of survey)
• Whilst mean duration of symptoms was 13.2 years, there was some evidence this had fallen since the widespread adoption of serological testing in the 1990’s the mean duration of symptoms of those diagnosed after 2000 was 12 years, still high (Similar findings to a large American study)
• EQ-D5 tool permits comparison across many different disease areas and is therefore useful in assessing the comparative cost-effectiveness of a wide range of interventions (recommended by NICE for calculating quality adjusted life years)

Conclusion

• The symptoms of undiagnosed coeliac disease are associated with a prolonged and substantial reduction to QOL. In light of these results, there seems to be a case for examination of the cost-effectiveness of improved methods of detection and diagnosis, including population screening.