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A mixed-method study into quality of life for bladder cancer patients

This study examined the quality of life of patients with superficial bladder cancer who were undergoing intravesical therapy. It used both qualitative and quantitative methods.

Denise Williams-Cox, MSc, RGN, DipHE

Thackray Care Nurse Specialist, Continence Division, Coloplast Ltd, Peterborough

 

The patients in this study had received or were receiving courses of chemotherapy - mitomycin C - or immunotherapy - bacillus Calmette-Guerin (BCG). Some were receiving maintenance treatments, dependent on tumour grade, response and recurrence seen at check cystoscopy.

The side-effects of mitomycin C are low (Van Helsdinjen et al, 1988), but those from immunotherapy (BCG) are increased, mainly consisting of bladder irritability. Symptoms severe enough to require BCG occur in up to 6% of patients (Lamm et al, 1986; 1995).

Literature review

Quality of life is commonly seen as reflecting the subjective feeling of well-being (Ringdal and Ringdal, 1993). It is a multidimensional construct that includes physical, functional, emotional and social well-being issues (Hakamies-Blomqvist et al, 2001). Many participants in this study knew they had a good prognosis, but this does not necessarily relate to quality of life (Ringdal et al, 1994).

The diagnosis alone may have varying effects on each patient, and this needed to be analysed subjectively, and viewed objectively, for a model of appropriate care to be implemented.

Patients with superficial bladder cancer may live with the threat of recurrence for years, an issue that has received little attention in the nursing literature, although many patients experience it, including those in this study (Mahon, 1991).

Education and information are important (Rose, 1989; Luker et al, 1995; Graydon et al, 1997). Nurses cannot assume that just because patients have been told something in the past, it means they have all the information they need if their cancer recurs. Many patients may have remained disease-free for some years.

Methodology and design

The research was exploratory, descriptive and non-experimental, and used quantitative and qualitative approaches. Linking quantitative and qualitative data can be useful (Rossman and Wilson, 1991; Greene et al, 1989), for reasons including:

  • Each can confirm or corroborate the other via triangulation
  • It can elaborate or develop analysis, providing richer detail
  • It can initiate new lines of thinking.

This combined approach was chosen to obtain systematic outcomes and measures for use as a comparison with personal experiences.

More in-depth case studies were undertaken on one patient in each group. This was appropriate for evaluation purposes, as it provided a detailed and multi-perspective account of experiences and processes resulting from an intervention. The study was approved by the local ethics committee.

Study sample

Participants were recruited from the caseload of a urology department and were under the care of a urology nurse specialist. All had transitional cell carcinoma bladder cancer and were receiving intravesical treatments in a dedicated cancer care unit.

A small convenience sample of all patients undergoing intravesical therapy over a three-month period were asked to participate. All those willing were included in the study, regardless of age or gender. Bladder cancer is more prevalent in men, and only one woman was recruited. To provide comparable data to meet the research aims, participants were divided into two groups:

  • Three patients newly diagnosed with bladder cancer starting a formal course of intravesical treatment (all male; mean age 64 years)
  • Ten patients on maintenance treatment (nine male, one female; mean age 65.2 years; mean time since diagnosis 9.5 years).

They were asked to complete a questionnaire, and were then interviewed individually, to provide further information.

Data collection

The quality of life questionnaire was adapted by Bohle et al (1996), and was suitable for the present study as it focused on bladder cancer and its treatments. It had 27 questions relating to general quality-of-life issues in the following areas:

  • Well-being (physical and mental state, energy and health) (questions 1-4)
  • Work (business and domestic, financial situation, leisure activities, independence in everyday life) (questions 5-9)
  • Illness (coping with disease, abilities, self-esteem and person in general) (questions 10-13)
  • Family (everyday life with partner, sexual activity, family and position in family) (questions 14-17)
  • Friends and social contacts (contact with and number of friends and acquaintances, contact with other people and medical treatment) (18-21).

Participants were also asked to what degree their condition affected their everyday life, impairment of mood, dissatisfaction with life, and to give a general rating of physical condition and rating of quality of life in a comment section (questions 22-25).

Participants were asked to answer most questions (questions 1 to 25) using a five-point scale, where 1 is either ‘very satisfied’ or ‘not at all’, and 5 is ‘very dissatisfied’ or ‘very much’, depending on the question format. Those relating to physical condition and quality of life (questions 26 to 27) have a seven-point scale in which 1 is ‘poor’ and 7 ‘excellent’.

Interviews were undertaken to gain insight into participants’ subjective experiences, allowing a more in-depth exploration and greater insight into the effects of treatment and care. Questions were open-ended, yet focused, and allowed participants to discuss relevant issues and insights. They were conversational in style, and followed the themes within the questionnaire.

The interviews lasted 10-15 minutes, and were recorded, with participants’ permission. The researcher transcribed the interviews, then reviewed the data to ensure accuracy. The interviews were conducted in relaxed, informal surroundings.

Quantitative data analysis

Table 1 shows the results of the data collected from the questionnaires. In questions 1-21, there was a ‘satisfied’ to ‘somewhat satisfied’ response in both groups. In questions 22-25, there was no difference in the mode of responses; however, the newly diagnosed group showed a mean which related to ‘little’ or a ‘rather’ affected response, whereas the maintenance group showed a ‘not at all’ to ‘little’ response to the effects on their general quality of life. Comparisons were statistically insignificant. The figures suggest that while newly diagnosed participants appeared ‘satisfied’ to ‘somewhat satisfied’ with their quality of life, they felt ‘a little’ or ‘rather’ affected by their health.

In questions 26 and 27, answers corresponded, and the same responses were given for both questions, so the data collated were compared together. There was no difference between the groups, as both showed a mean nearer the top end of the scale, with a mode of 6. Comparisons were statistically insignificant.

Qualitative data analysis

The qualitative data were collected from the comment section of the questionnaires and from the transcribed interviews.

The framework method of analysis was chosen (as described by Pope et al, 2000). This allowed a structured analysis generating data that could be generalisable to a patient group, under-pinning care.

Case study analysis was also used, collating data from a patient receiving maintenance therapy and a patient who had been newly diagnosed (Yin, 1994).

Interview data analysis - area 1: general well being, physical, mental, health and energy

Newly diagnosed participants

Responses in this area were minimal, although all were ‘satisfied’ or ‘very satisfied’ in the quantitative data. Participants were satisfied with their health, but questioned whether it would deteriorate.

Maintenance therapy participants

Other health issues were affecting participants’ responses in this area, which elicited mixed responses in the quantitative study. It appeared they were more worried about other aspects of their health than their cancer.

Interview data analysis - area 2: independence, business and domestic

Newly diagnosed participants

Two participants expressed no real concerns in the interviews. However, the third was dissatisfied with his work and financial situation. He was a seaman, and unable to work because he needed weekly treatment. He expressed fears about his disease and his future in his job. It is important to identify and discuss individual problems.

Maintenance therapy participants

Most of the quantitative responses were ‘satisfied’ or ‘somewhat satisfied’, although two participants were unhappy with their financial situation. One was ‘somewhat dissatisfied’ with her life in general, but her partner had cancer, and she had other health problems.

Although high levels of satisfaction regarding work were given in the questionnaire, in interviews some participants talked of disappointment that their condition had forced them to retire early. This was because they had found it difficult to continue or were unable to give full commitment due to sick leave, or their employers had not been understanding. They felt pushed out through no fault of their own and, in one case, punished for having cancer. This participant had been diagnosed for 23 years, but still felt let down, and blamed ill health not on his cancer, but on the stress his employers caused. It is important to identify such factors and use a problem-solving approach to tailor treatment.

Interview data analysis - area 2: illness, coping with disease, personal, self-esteem

Newly diagnosed participants

Although this generated a lot of discussion, in the quantitative analysis only the case study participant was dissatisfied with how he was coping with his disease. He described being devastated by his diagnosis, but this was eased by the care and support he received from medical and nursing professionals. Other responses reiterated that information-giving, counselling and support benefit patients, easing their journey through the grieving process.

Maintenance therapy participants

The quantitative data indicated that all but one participant were satisfied with how they were coping with their disease, and their general life. The qualitative data indicated uncertainty, fear and a lack of trust in the information given. Building trust and confidence in patient relationships by providing consistent reliable information is vital.

Other responses appeared to confirm this point. However, it must be realised that patients may have said what they thought the researcher wanted to hear. They talked about gaining confidence in their treatment from the information they received and the way it was given. This emphasises the need to ensure patients are kept informed, as uncertainty can affect their coping mechanisms.

Interview data analysis - area 3: everyday life with family

Newly diagnosed participants

The quantitative data showed that all participants were ‘satisfied’ or ‘somewhat satisfied’, although one said none of the responses was appropriate. In interview he explained this was because his wife lived abroad. Participants discussed communication with partners and feelings they had expressed, and how they had reacted to the diagnosis. Partners are also living with the diagnosis, and need professional support.

Maintenance therapy participants

One participant was dissatisfied with his sexual activity due to erectile dysfunction. Most said their partners were quite happy living with the diagnosis, and supportive at times of treatment. Although there was satisfaction in relationships, there was some uncertainty in participants being treated with BCG, because of its association with TB. However, it was reassuring to see that when patients and family members receive accurate information, these uncertainties were allayed.

Interview data analysis: area 4 - friends, contacts, medical treatment

Newly diagnosed participants

All participants expressed satisfaction, except one, who acknowledged that he and his wife did not socialise, so none of the possible answers was appropriate.

One said his cancer had not affected contact with friends, but added that his symptoms affected him for two days after treatment. Since he received treatment on Fridays, it would seem to affect his socialisation. When this was raised he replied that it was tolerable because he could see an end to it, showing no real perception that he may need further maintenance treatments - even though he had been told this was likely. This highlights the importance of repeating information.

Maintenance therapy participants

In the quantitative data only one participant was ‘somewhat dissatisfied’ with contact with other people, but explained that this was more related to a recent diagnosis of diabetes, which had created fear and uncertainty and caused some withdrawal from socialisation.

Although participants were satisfied in this area, they seemed to express stress related to their check cystoscopy. All said this was their most worrying time. In the researcher’s service patients sometimes lack support from a familiar person, as they are not admitted to a designated urology unit for their operations. Although the nurse specialist checks the operation lists, this is done on an ad hoc basis, and she may only realise a patient has a check cystoscopy if they call for support or advice.

Communicating with others with the same disease during treatment was discussed. Participants said this passed the time and was reassuring. They also discussed familiarity, in that they got used to the same nurse, and found it helpful to be able to ring ‘someone they know, and knows them’ about problems or uncertainties.

Summary of qualitative analysis

Participants’ overall perception of quality of life was satisfactory in the quantitative data. However, the qualitative data provided information that could help us to improve patient care.

Participants coping with their diagnosis and treatment in the early stages appear only to highlight the direct problems of acceptance. Those who have lived with their diagnosis for some time discussed problems that have arisen over time, relating to work, fear of recurrence, and of needing further treatments, which may be why cystoscopies are such a stressful time. All participants highlighted the fact that a familiar face in a clinic and voice on the telephone is important.

Recommendations for practice

Communication and information are essential to patients with superficial bladder cancer. They need a support network which hinges significantly on the specialist nurse involved in their care, who is a familiar face and voice. A more seamless service is needed, which may be achieved by continuing to develop the nurse specialist role and ensuring patients are treated in designated urology departments and wards. Patients could be given a 24-hour contact number to call staff familiar to them.

While specialist nurses are valuable assets in specific areas, they must cascade knowledge, and act as role models for their peers (Peplau, 1965). All nurses need knowledge and awareness of quality-of-life issues, so they can be part of the supportive network for these patients. A rolling programme of education by the nurse specialist and medical practitioners would enable this to happen.

In treating patients with bladder cancer, nurses must meet a variety of physiological and psychological needs at each stage of the illness. Patient education is critical, and nurses have a key role in patients’ physiological and psychological well-being.

Conclusion

It is essential to continue improving services, identifying what patients need and want. Nurses play a key role with patients and families/carers with cancer, because they have direct, prolonged contact with them, and can assess and positively affect their quality of life. To do this, they must be aware of individual coping mechanisms, and identify and tailor care to individual needs.

 

 

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