7Information and Support

Publication Details

A clinical service that treats patients with NLUTD will face the need to inform and educate patients and carers. Information might be needed about relatively simple practical issues such as fluid management or may involve education about procedures such as intermittent self catheterisation. However, in some cases, there are complex decisions to be made that involve weighing up benefits and risks. For example, parents of children with NLUTD might need to be involved with decisions about reconstructive surgery that will have life-long implications. In such circumstances decisions aids are likely to be of value.

A further challenge to clinicians who are providing information is the need to adapt the presentation of information to the individual patient’s circumstances. Some patients will have significant cognitive and communication impairment due to their underlying neurological condition while others, such as patients after stroke or spinal cord injury, will be coping with major changes to their life of which their NLUTD is only one facet. The need for information to be appropriately presented to patients in the paediatric age group is self-evident.

One of the difficulties facing the patient with NLUTD is that of sifting information that comes from different sources. There are numerous on-line resources that provide information to patients; these include the websites of specialist hospital departments, disease-specific charities, patient groups and commercial organisations. There is a need to help patients and carers interpret information and apply knowledge to their own particular circumstances in an appropriate way.

7.1. Information and Support

7.1.1. Does the provision of information and support regarding the different management systems improve patient outcomes?

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Frequency of voiding by day and night No. of incontinence episodes per week

7.1.1.1. Clinical Evidence Review

Four studies were found. Cardenas 200432 was an RCT, but lacked blinding or evidence of allocation concealment, thus being prone to bias. It evaluated effects on areas related to quality of life and patient perception of symptoms, but these outcomes were incompletely reported. For example, data on symptomatic UTIs were presented as episodes rather than counts of subjects affected, and group data were not presented for the other outcomes.

Hagglund 200533 and Anderson 198334 were trials, but not randomised. In the Hagglund 200533 paper, participants were allocated according to geographical area, and although the areas were evaluated for demographic similarity no baseline comparison of the groups were made, except for the outcome variable. Therefore this study was prone to considerable bias. The only relevant outcome reported was UTIs in the past 6 months. In the Anderson 198334 study, two cohorts of patients were treated at different times: 1975 and 1979. Although no attempts were made to match the groups, they were reportedly similar in terms of age, sex, proportion of quadriplegics and types of drainage used. Again, the only relevant outcome reported was number of UTIs in the past 6 months.

Barber 199935 was a prospective single-group observational study, and thus prone to bias through inevitable threats to internal validity. All patients had experienced >2 symptomatic UTIs during the 6 month period before intervention, and were deemed to have had a successful outcome if their count of symptomatic UTIs (or significant pyuria/bacteriuria) dropped to <2 in the 6 month period after intervention. Patients not responding after one session in the first 6 months were either offered further education sessions or antibiotic therapy. Those opting for further antibiotic therapy at 6 months (or later) were classified as outcome failures, although of course they may have responded to education sessions eventually had they been given the chance.

All outcomes from all four studies were graded as very low quality with respect to confidence in the effect of the interventions. Table 11 summarises the included papers.

Table 11. Summary of studies included in the clinical evidence review.

Table 11

Summary of studies included in the clinical evidence review.

Incidence of symptomatic UTIs

Hagglund 200533 reported that the incidence of symptomatic UTIs was 78% at both baseline and follow up in the control group, but in the intervention group it reduced from 70% at baseline to 41% at follow up (data extrapolated from a figure). The groups did not differ significantly at baseline for the primary outcome, and so the follow up proportions were compared within a meta-analysis. Anderson 198334 reported that groups differed in terms of symptomatic UTIs at 6 months follow up, with an incidence of 29% in the Information group and 69% in the control group. However, no reports of baseline incidence were given. The GRADE profile below summarises these results.

GRADE profile. Symptomatic UTIs (follow-up mean 6 months).

GRADE profile

Symptomatic UTIs (follow-up mean 6 months).

Incomplete reported outcomes
Episodes of symptomatic UTIs

Cardenas 200432 reported a trend for a lower number of total episodes of symptomatic UTIs in the intervention group (p=0.097), after adjustment for baseline values. At baseline the intervention group had 41 episodes of UTIs, which reduced to 32 at 6 months follow up, whilst the control group had 27 episodes at baseline and 26 at follow up.

Barber 199935 reported that the intervention led to 3/17 patients having a positive outcome (defined as less than a threshold of >2 UTIs/6 month period) after one intervention session. After an unspecified number of further intervention sessions (one per subsequent 6 month period) the total count of positive responders rose to 11/17. The 6 non-responders opted for antibiotics after one or more interventions, and thus it cannot be assumed they would not have responded to the intervention after more repetitions. Overall, repeated education sessions appeared to be more effective than a single session.

Patient and carer perception of symptoms/quality of life

Cardenas 200432 compared the health beliefs, locus of control and self efficacy across the intervention and control groups, with adjustment for baseline scores (Table 12). Compared to the control group, the group receiving the information intervention had a significantly increased perception of the severity of their UTIs, a decreased sense of self efficacy, and showed a trend for a higher locus of control. Unfortunately no data were presented apart from the ANCOVA results.

Table 12. Patient and carer perception of symptoms/quality of life reported by Cardenas 2004.

Table 12

Patient and carer perception of symptoms/quality of life reported by Cardenas 2004.

7.1.1.2. Economic evidence

No economic studies were identified on the provision of information and support.

7.1.1.3. Evidence Statements

Clinical Evidence Statements

Two non-randomised trials comprising 135 participants suggested that provision of information might reduce incidence of symptomatic UTIs (6 months) (very low quality).

Evidence statements could not be produced for the following outcomes of the study by Cardenas 200432 as results were presented in a way that meant we could not estimate the size of the intervention effect:

  • Incidence of UTIs
  • Patient and carer perception of symptoms/quality of life

Evidence statements could not be produced for the following outcomes of the study by Barber 199935 as results were presented in a way that meant we could not estimate the size of the intervention effect:

  • Incidence of symptomatic UTIs
Economic evidence statement

No economic studies were found on the provision of information and support for patients with NLUTD. The GDG believes that a better informed patient will result in fewer long term costs due to better adherence to treatment and a better understanding of self care. There was recognition of the need for good quality information to be provided and this would incur staff time cost especially when provided through face to face training by clinical staff.

7.1.2. Recommendations and links to evidence

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Offer people with neurogenic urinary tract dysfunction, their family members and carers specific information and training. Ensure that people who are starting to use, or are using, a bladder management system that involves the use of catheters, appliances (more...)