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Why women leave therapy for stress incontinence

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AUTHOR Carolyn Louise MacInnes, BSc, MPC, RCN, is clinical nurse specialist – continence care, Castlemilk Health Centre, South-East and Camglen CHP, Glasgow, Scotland.

ABSTRACT MacInnes, C. (2008) Why women leave therapy for stress incontinence. Nursing Times; 104: 41, 50–53.

Stress urinary incontinence (SUI) is the involuntary leakage of urine associated with effort, exertion, sneezing or coughing (Abrams et al, 2002) and is the most common type of incontinence in women (Hampel et al, 2004). In 2005, NHS Greater Glasgow introduced a primary care management of SUI pathway. However, a high percentage of patients failed to complete their therapy. The aim of this study was to explore why some women with SUI dropped out of the pathway.

The NHS Greater Glasgow pathway for the management of stress urinary incontinence (SUI) in primary care follows the Scottish Intercollegiate Guidelines Network (SIGN) (2004) guidelines and recommendation from the Scottish Medicine Consortium that duloxetine should only be prescribed by GPs when the patient had tried conservative treatments (Scottish Medicines Consortium, 2007).

Duloxetine, an inhibitor of serotonin and noradrenaline reuptake, is licensed for the treatment of moderate to severe stress incontinence in women; it may be more effective when used as an adjunct to pelvic floor exercises.

NHS Greater Glasgow has 32 weekly nurse-led continence clinics. However, patients being treated for SUI often failed to complete their treatment.

The aim of this study was to understand why some women with SUI do not complete their therapy and to make recommendations to improve completion rates.

The study explored four main themes:

  • Patients’ reasons for referral to the clinic and their perceptions of the service they received;

  • Their perceptions of and satisfaction with the pathway;

  • Attitudes towards and the impact of SUI on their life;

The main reasons why patients fail to complete the course of their therapy.

Literature search

SUI has a negative impact on quality of life (Subak et al, 2006). This includes depression (Valvanne, 1996), anxiety (Berglund et al, 1994), embarrassment (Mitteness and Barker, 1995) and low self-esteem (Fultz et al, 2003).

SUI can be successfully managed conservatively with pelvic floor muscle therapy (PFMT) as the first-line treatment option (Wilson et al, 2002; Fantl et al, 1996) and PFMT in conjunction with duloxetine as the second-line treatment (Mariappan et al, 2006; Berghmans et al, 1998).

PFMT requires high levels of motivation but many women with SUI fail to attend their clinic appointments (Di Matteo, 1994; Vasey, 1990; Epstein and Cluss, 1982) or comply with therapies. Despite this, research has shown that patients are generally satisfied with treatment for SUI (Dattilo, 2001; Cammu and Van Nylen, 1995).

Duloxetine is currently the only approved medication for the treatment of SUI. Trials comparing duloxetine with a placebo indicated that it can improve quality of life and reduces the frequency of episodes of incontinence. However, many participants report side-effects, in particular nausea, with 12–15% of patients discontinuing treatment (Mariappan et al, 2006).

Poor compliance by patients with prescribed medication or other therapies is a acknowledged problem and this can have negative effects on treatment outcomes (Rosner, 2006).

Non-compliance may be due to a lack of confidence in the efficacy of treatment (Di Matteo et al, 1993), poor motivation, a lack of family support (Di Matteo, 2004), depression (Cammu et al, 1991) or a lack of knowledge (Wilson and Herbison, 1998).

Method

This study used a philosophical qualitative approach to explore the patient’s individual experiences (Parahoo, 1997) including cultural, social and other external factors that influence their behaviour. The data was generated from individual patient interviews.

Patients were recruited using convenience sampling. The target population was all of the women over 16 years who had attended the nurse-led continence promotion clinics with symptoms of SUI and had commenced on the SUI pathway but then dropped out of therapy. Patients must have missed two consecutive follow-up appointments.

All of the women who had been referred to the community nurse-led continence clinic over a six-month period were sent a patient information form. If they fitted the inclusion criteria, participation in the study was discussed.

Informed consent was given at all potential participants’ first appointments prior to their details being passed to the researcher. They were included in the study if they later dropped out.

Patients excluded from the study included those with predominant symptoms of another type of incontinence and those with a learning disability or cognitive impairment. The researcher did not invite any patient who they had treated in their clinic to take part.

Data was collected through individual open-ended telephone interviews using a topic guide. Each interview was taped and transcribed.

Telephone interviews were more convenient for the researcher and the participant, took less time than face-to-face interviews and could be conducted out of work hours. The disadvantage of this approach was that it was more difficult to establish a rapport with the patient.

Interviews were of approximately 40 minutes duration and prompts were given to encourage a discussion of the issues identified in the literature and the topic guide. All interviews were carried out by the same researcher.

Transcripts were read a number of times and the results were compared and checked for emerging themes. To help with the analysis, several charts were made of each of the themes so these could be examined and compared.

Ethics approval was gained for the study.

Results

Twelve patients participated in the study. The characteristics of the sample are outlined in Table 1.

TABLE 1. PATIENT CHARACTERISTICS
Pt*AgeDepcat Score**Current depression***Point last seen in pathwayEthnic group
1 65 7 Yes PFMT British
2 53 3 YesPFMT British
3 55 4 YesPFMTBritish
4457 NoPFMT British
5 37 5 No PFMT British
6 43 7 No PFMT British
7 51 4 No PFMT British Asian
8 62 7 No PFMT British
9 28 6 No PFMT British
10 65 7 No PFMT British
11 57 5 Yes PFMT British
12 60 7 Yes Duloxetine and PFMT British
* Pt=patient;** Depcat score: a measurement of deprivation in relation to health and disease in Scotland (1=most affluent, 7= most deprived).
*** Current depression: The patient stated they had been diagnosed with and are currently being treated for, depression by their general practitioner.

This study used the Carstairs Deprivation Categories (depcat) scoring system, which is the most commonly used measure of deprivation in relation to health and disease in Scotland (Carstairs and Morris, 1991). Scores range from 1 (most affluent) to 7 (most deprived). The patients included in this study lived in postcode areas of deprivation 3–7, with more than half of the patients living in Glasgow’s most deprived areas.

The literature search indicated a link between clinical depression and non-compliance with medical therapies so a category to note whether a patient was diagnosed as having clinical depression was included. Five of the patients suffered from clinical depression, four of whom were prescribed antidepressants.

Eleven of the patients who were interviewed had dropped out of therapy during the first 12 weeks of the pathway when they were receiving PFMT, with only one patient dropping out while on drug therapy and PFMT.

Reasons for referral into the clinic and expectations of the service

The majority of participants were seeking advice or help for their problem. Their reasons for attending included ‘to take steps to not feel so powerless’ and for ‘some medicine’ . One patient was hoping to have surgery.

Most women reported that they were happy with the service they received and that it had met their expectations.
However, two patients said that they had not received any written information at the clinic and would have found this helpful.

Perceptions and satisfaction of the pathway

Nearly all the patients stated that they found the pathway easy to understand and were happy with it.

The patient who was not happy had previously undertaken a pelvic floor exercise programme and said she ‘didn’t really find them very good and I don’t like doing them’.

Despite most patients reporting that they were happy to follow the pathway, three reported negative feelings about regular pelvic floor exercises. Comments included: ‘they’ve always made me feel a bit queasy’; ‘I can’t really do them and they make me feel a wee bit sick’; and ‘sometimes I forget.’

Only four patients thought this treatment pathway was the right plan for them. Five were unsure and three thought it would not work.

The majority of the patients felt that doing 12 weeks’ PFMT was a reasonable timescale.

Attitudes towards and the impact of SUI

Two patients said SUI had no impact on their lives, while the rest of the sample all stated that it had a negative impact.

The negative factors included anxiety regarding leakage, an impact on their social life and personal relationships/working life, embarrassment, fear of smells, having to alter the clothing that they wear, increased laundry, the stigma attached to incontinence and the financial impact of purchasing pads.

Main reasons for failing to complete therapy

Most patients gave one main reason then added other reasons during the interview. Five main categories were identified: health; family; housing; forgotten/mixed-up appointment dates; and previously failed therapy. Two patients were dry and one patient dropped out because of the side-effects of duloxetine. Common themes are listed in Box 1.

BOX 1. REASONS FOR DROPPING OUT OF THERAPY
  • Health problems, for example depression and alcohol addiction

  • Family, for example caring for a sick relative

  • Housing, for example the kitchen ceiling falling in and the flat being renovated as a part of Glasgow’s regeneration programme

  • Forgotten/mixed-up appointments

  • Previously failed therapy. Comments included: ‘I was given pelvic floor exercises, and I had tried them before, I used to go to the physio… and they never worked then, so I don’t think they would work now’

  • No evening clinics available

Discussion

The findings of this study were similar to those reported in the literature search.

Nearly all of the patients were seeking help/advice for their SUI, were happy with the service they received and said the nurse-led clinic had met their expectations.

Most of the women had expected to receive pelvic floor exercises, with two seeking medication and one seeking surgery. This indicated that most patients had realistic expectations of the initial treatment they would receive for their SUI and unrealistic expectations were not a reason for dropping out of therapy.

All of the patients found the pathway easy to understand and most were happy with it so the pathway was not the reason for dropping out of the therapy.

Patients gave several reasons for not being happy with PFMT and it is apparent that some women have an aversion to doing the exercises. This is a similar to the research findings of Cammu and Van Nylen (1995) who reported that only 77% of women would recommend PFMT to friends and relatives.

All the patients stated that they had understood the treatment. Only four participants believed the pathway would work, five were unsure and three did not think it would work. This indicates that, despite understanding the pathway, some of the women were unsure or had negative feelings about its effectiveness. This is in line with the literature search findings that non-compliance may be due to a lack of confidence in the efficacy of treatment (Di Matteo et al, 1993).

Failing to complete therapy may indicate poor motivation and a lack of belief in their treatment.

Some of the reasons given were superficial; for example, one participant missed an appointment because her Christmas decorations were damp.

It is clear that people prioritise circumstances in their lives in different ways. Research has shown that PFMT is time consuming (Cammu et al, 2004; Ashworth and Hagan, 1993) and requires high levels of motivation and a willingness to carry out an intense training programme (Bø, 1995).

Research has demonstrated the negative impact urinary incontinence has on the lives of women.

This research found that two patients were very affected by the stigma of having a continence problem and attending a clinic.

Depression is a risk factor for non-compliance with therapies (Goodenow et al, 1990) and four of the patients reported a diagnosis of clinical depression, which may support the possible link between clinical depression and non-compliance.

Limitations of the study

This study used a small sample and telephone interviews did not allow for any non-verbal communication cues to be read.

As qualitative research is grounded in ‘real-life experience’ the interpretation of the results may have been influenced by the researcher’s beliefs and background knowledge.

Owing to the sample size and time constraints, the researcher was able to use only one method of data collection. The findings would have been stronger had more than one method been used.

Implications for further research

This study has identified several implications for practice. It would be helpful to implement the recommendations listed in Box 2 then undertake an audit to identify whether there is any reduction in drop-out rates. A larger study would enable themes identified in this research to be developed and also for new themes to emerge.

BOX 2. SUMMARY OF PRACTICE RECOMMENDATIONS

  • Assessments should identify patients’ expectations of the service

  • Patients should be monitored regularly and progress monitored against their goals

  • Patients who have failed therapy in the past should be allowed to consider other options

  • The care pathway for SUI should be used as a guide

  • Options such as home visits and evening clinics should be considered if patients have difficulty attending clinic

  • Patients who drop out of therapy should be given an opportunity to talk to a nurse about other treatment options

Conclusion and recommendations

This study provided an initial framework for understanding why women undertaking the primary care management of stress urinary incontinence pathway drop out of therapy prior to completion. Additionally, there is a possible link between non-compliance and depression.

A more holistic nursing assessment of patients is required. All continence assessment tools must include a section that identifies what the patient is looking for from the clinic. Patients should have their progress monitored regularly and their goals should be evaluated at each appointment.

Patients who have previously failed therapy should be encouraged to discuss their options and choose the path they want to follow, even if this means an onward referral to secondary care.

It should be acknowledged that the care pathway is only a guide to care and patients should be provided with written information.

The removal of barriers to compliance may reduce the numbers of patients dropping out of therapy. This may include the option of house calls for patients who are caring for sick relatives or evening clinics.

Patients should be informed that they can rebook appointments if they are unable to attend. The use of appointment reminders has been proven to reduce clinic non-attendance (Herrick et al, 1994).

Patients who drop out of therapy should receive a standard letter advising them that they can telephone to discuss further treatment options with a nurse.

Signs for continence clinics need to be discreet. Directions to the clinic room at the health centres/doctors’ surgeries should be given in the appointment letter to reduce the need for patients having to ask for directions.

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