Managing neurogenic bowel dysfunction: what do patients prefer? A discrete choice experiment of patient preferences for transanal irrigation and standard bowel management

Figures & data

Table 1 Final attributes and levels

Attribute	Levels
Risk of urinary tract infection: People can experience bladder or urinary infections while using various approaches to bowel care. The infection can last for several days and may require a course of antibiotics.	• No infection • One infection in the following year • Two infections in the following year • Four infections in the following year
Risk of fecal incontinence: People can experience fecal incontinence which can result, for instance, in soiling of clothes from time to time. Some devices can minimize the likelihood of incontinence by enabling you to decide when to go to the toilet and empty your bowels. This would give you more control over your bowel movements.	• No episodes of fecal incontinence per month • One episode of fecal incontinence per month • Two episodes of fecal incontinence per month • Three episodes of fecal incontinence per month
Time spent in the toilet: Different approaches to bowel care vary in the time that you have to spend in the toilet in order to empty your bowel. This may be related, for instance, to the number of different steps required to use a device. This feature relates to the time that you spend in the toilet.	• You will spend up to 30 minutes • You will spend up to 1 hour • You will spend up to 1.5 hours • You will spend up to 2 hours
Ease of use: Devices to help your bowel care often rely on water being gently pumped into your bowel. Existing irrigation devices are manually operated, requiring several steps along with some hand movement and strength to operate the device. Some new irrigation devices are automatically operated, thereby reducing the number of steps involved and requires less hand movement and strength.	• You will use a manual pump (process requirinĝ30 steps) • You will use an automatic pump (process requirinĝ15 steps)
Frequency of use: Some approaches to bowel care can be undertaken every other day, some need to be done every day, and some people need to be on the toilet more than once a day. Different approaches can give you control of when you wish to empty your bowels. This can enable you to feel more in control and plan ahead in terms of when you need to use the toilet.	• Once every two days on average • Once every day on average • Twice a day on average • Three times a day on average
Level of control/independence: Devices for bowel emptying can require a lot of different steps to work properly. Different components or parts need to be operated in the correct sequence. Some people need help from others because the devices are complex to use. However, with simpler devices people may feel confident to use the device on their own.	• No help needed while emptying your bowels • You need less help than you did previously • You need as much help as you did previously • You need more help than you did previously
Out-of-pocket cost: Most people do not pay out of their own pocket for devices to assist with bowel care. However, we would like you to think about how much you would value different approaches to bowel care.	• £20 • £40 • £60 • £80

Table 5 Results of conditional logit model, including odds ratios for preference of attribute levels

Parameter	Level	All (N=129)
		OR (SE)	95% CI	WTP (£)
Risk of urinary tract infection
	0 infection	3.430 (0.107)*	2.77–4.23	123.20
	1 infection in the following year	2.089 (0.117)*	1.66–2.62	73.70
	2 infections in the following year	1.502 (0.103)*	1.22–1.83	40.70
	4 infections in the following year (reference)	–	–	–
Risk of fecal incontinence
	No episodes per month	5.182 (0.111)*	4.17–6.43	164.50
	One episode per month	2.861 (0.112)*	2.29–3.56	105.10
	Two episodes per month	1.588 (0.100)*	1.30–1.93	46.30
	Three episodes per month (reference)	–	–	–
Time spent on toilet
	Up to 30 minutes	2.661 (0.107)*	2.15–3.28	97.90
	Up to 1 hour	1.890 (0.122)*	1.48–2.40	63.70
	Up to 1.5 hours	1.211 (0.092)*	1.01–1.45	19.10
	Up to 2 hours (reference)	–	–	–
Ease of use (how you will pump water into your bowel)
	Use an automatic pump	0.878 (0.066)*	0.77–0.99	−13.00
	(requiring ~15 steps)
	No pump	0.295 (0.183)*	0.20–0.42	−122.00
	Use a manual pump	–	–	–
	(requiring ~30 steps/reference)
Frequency of use
	Once every two days	4.691 (0.107)*	3.80–5.78	154.60
	Once every day	3.410 (0.120)*	2.69–4.31	122.70
	Twice a day	1.639 (0.100)*	1.34–1.99	49.40
	Three times a day (reference)	–	–	–
Level of control/independence
	No help needed while emptying bowels	1.998 (0.092)*	1.66–2.39	69.20
	Less help than previously	1.174 (0.118)	0.93–1.48	16.10
	As much help as previously	1.203 (0.096)	0.99–1.45	18.50
	More help than previously (reference)	–	–	–
Out-of-pocket cost	Per £20 decrease	1.230 (0.034)*	1.15–1.31	–

Note:

* Significant at P<0.05.

Abbreviations: CI, confidence intervals; OR, odds ratio; SE, standard error; WTP, willingness to pay; –, Not applicable.

Table 2 Sociodemographic profile of the sample

Sociodemographic characteristics	N=129
Sex, female	72 (56%)
Average annual income of household (£), n (%)*
<20,000	51 (40%)
21,000–30,000	31 (24%)
31,000–40,000	15 (12%)
41,000–50,000	8 (6%)
51,000–and higher	10 (8%)
Prefer not to answer	14 (11%)
Duration of condition in years (mean)	18.7 (14.0)
Number of bowel movements or attempts the previous day, n (%)
None	46 (36%)
1–3 times	71 (55%)
4–6 times	11 (9%)
7 or more times	1 (<1%)
Was the number of times typical, n (%) (yes)	109 (84%)
Previous approach to bowel care, n (%)
Same as current	12 (9%)
Previously used anal irrigation device	10 (8%)
Previously used approach that did not include an anal irrigation device	107 (83%)
Previous approach to go to toilet (more than one response could be selected) [a], n (%)
Peristeen (Coloplast) – device	8 (7%)
B Braun Irrimatic – device	0 (0%)
MBH Qufora – device	0 (0%)
MBH Qufora Mini – device	1 (1%)
Practomed GmbH – Reprop Clyster – device	0 (0%)
Pads	15 (13%)
Diet plan	14 (12%)
Laxatives/suppositories	80 (68%)
Digital stimulation	27 (23%)
Manual digital evacuation	39 (33%)
Anal plug	2 (2%)
Physical exercise/muscular training	9 (8%)
Abdominal massage	22 (19%)
Smaller enemas with active ingredients (not anal irrigation)	34 (29%)
Other	10 (9%)
Length of time using previous approach [a], n (%)
<1 year	12 (10%)
1–2 years	12 (10%)
2–3 years	16 (14%)
4 years or more	77 (66%)
Reason for discontinuing your previous approach (more than one response could be selected) [a], n (%)
Insufficient effect	82 (70%)
Emptying bowel takes too long	39 (33%)
Bowel incontinence	49 (42%)
Dependence on carer	7 (6%)
Given up due to lack of support training	1 (1%)
Did not have a carer available to help	0 (0%)
Device was too complex to use	1 (1%)
Did not want to use anal irrigation device	3 (3%)
Other	20 (17%)
EQ-5D-3L score [b]
Mean (SD)	0.37 (0.32)
St Marks Overall Score
Mean (SD)	12.1 (4.9)
Cleveland Overall Score
Mean (SD)	12.9 (4.3)

Notes: [a] Among patients whose previous approach differed from current approach; [b] Using UK weights;

* not all data is shown.

Abbreviations: EQ-5D-3L, EuroQoL-5D-3L; SD, standard deviation.

Table 3 Clinical profile of the sample

Bowel care approaches	N=129
Current approach to bowel care, n (%)
Have a formal bowel care plan as discussed with a health care professional or have received training in use of an anal irrigation device	127 (98%)
Do not have a specific bowel care plan recommended by a health care professional and have not received any training in the use of an anal irrigation device	2 (2%)
Current approach to go to toilet (more than one response could be selected), n (%)
Peristeen (Coloplast) – device	126 (98%)
B Braun Irrimatic – device	0 (0%)
MBH Qufora – device	1 (1%)
MBH Qufora Mini – device	1 (1%)
Practomed GmbH – Reprop Clyster – device	0 (0%)
Pads	17 (13%)
Diet plan	14 (11%)
Laxatives/suppositories	41 (32%)
Digital stimulation	18 (14%)
Manual digital evacuation	19 (15%)
Anal plug	5 (4%)
Physical exercise/muscular training	8 (6%)
Abdominal massage	28 (22%)
Smaller enemas with active ingredients (not anal irrigation)	7 (5%)
Other	2 (2%)
Length of time using current approach, n (%)
<1 year	27 (21%)
1–2 years	21 (16%)
2–3 years	27 (21%)
4 years or over	54 (42%)
Position most frequently used to empty bowel, n (%)
From wheelchair	1 (1%)
On toilet	121 (94%)
On bed	1 (1%)
On commode	9 (7%)
Other	3 (2%)

Table 4 Features of current appliances, all patients and by condition

Features of current appliances	N=129
Urinary tract infection in the last 12 months, n (%) (yes)	80 (62%)
Number of urinary tract infections requiring antibiotics in the last 12 months [a] mean (SD)	3.1 (3.1)
Any fecal incontinence on current treatment, n (%) yes	75 (58%)
Episodes of fecal incontinence in last month [b], n (%)
None	25 (33%)
1–2 episodes	32 (43%)
3–4 episodes	12 (16%)
5–6 episodes	4 (5%)
Episodes most days	2 (3%)
Time on toilet, n (%)
Less than 30 minutes	48 (37%)
30 minutes to 1 hour	58 (45%)
1 hour to 1.5 hours	14 (11%)
1.5 to 2 hours	6 (5%)
Longer than 2 hours	3 (2%)
Pump requirements on current device, n (%)
Manually operated	115 (89%)
Automatically operated	8 (6%)
No device used	6 (5%)
Frequency of going to toilet, n (%)
Normally once every two days	76 (59%)
Normally once every day	40 (31%)
Normally twice a day	6 (5%)
Normally more than twice a day	7 (5%)
Assistance needed with current approach, n (%)
No help needed	92 (71%)
Sometimes need help	20 (16%)
Always need help	17 (13%)
Assistance received from [c], n (%)
Carer, eg, spouse, family member, or friend	33 (89%)
Health care provider, eg, nurse	4 (11%)
Do you currently pay for your bowel care, n (%)
Currently pay for a device	4 (3%)
Currently pay for laxatives, suppositories, or antidiarrheal medication	9 (7%)
Currently pay nothing	116 (90%)
Out-of-pocket cost per month (£) [d], mean (SD)	19.31 (39.39)

Notes: [a] Among patients who had urinary tract infection; [b] among patients who had any fecal incontinence; [c] among patients who were receiving assistance; [d] among patients who were paying for their bowel care.

Abbreviation: SD, standard deviation.