Evaluation of the breast-care nursing service in Yorkshire

Evaluation of the breast-care nursing service in Yorkshire V. M.Allinson Objectives: this study was undertaken to evaluate the patients’ experiences of the breast-care nursing service provided in Yorkshire from centres and breast units within the Yorkshire Breast Care Nurses Group (YBCNG). Design: the evaluation asked about: • • • •

The presence of the breast care nurse (BCN) at diagnosis. The information delivery to the patient. The provision of a home visit before and after surgery, and during the treatment phase (chemotherapy and radiotherapy). The prosthetic service provided in each unit.

Setting: breast cancer units and centres within Yorkshire. Participants: 260 patients from 13 hospitals within Yorkshire. Findings: patients valued the presence of the BCN at diagnosis and comments were made if they were absent. Home visits are highly valued by patients and are preferable to a phone call. Patients often did not recall receiving information at diagnosis even though hospital records confirmed its distribution. Patients were generally satisfied with the prosthetic service provided. Discussion: areas for improvement are highlighted providing benchmarks for units that are underachieving in some areas, such as the BCN availability at diagnosis. Information delivery has been re-evaluated in the region and format changed to a more personalized folder. © 2001 Harcourt Publishers Ltd Keywords: breast care nurses, evaluation, breast cancer

INTRODUCTION

Veronica M.Allinson RGN, BSc (Hons), Post GradDiploma (ANP), Clinical Nurse Specialist, Breast Care, Halifax Royal Infirmary, Free School Lane, Halifax,Yorkshire, UK

Breast cancer is one of the most common causes of cancer deaths among women in the UK, with one in 12 women developing it in their lifetime (Dey et al. 1997). Recent figures have indicated a decrease in the number of deaths from breast cancer. Peto et al. (2000) attribute this decline to different approaches in the management of breast cancer. There is a large amount of (ageing) literature focusing on the psychological and psychosocial issues surrounding breast cancer diagnosis and treatment (Watson et al. 1988, Maguire et al. 1978, Austoker 1995, Bloch, Kissane 1995). However, this research, although some years old, is widely accepted as standing the test of time.

Clinical Effectiveness in Nursing (2001) 5, 4–9 © 2001 Harcourt Publishers Ltd doi: 10.1054/cein.2001.0181, available online at http://www.idealibrary.com.on

The Calman/Hine report (1995) proposed a new structure for cancer services, it required uniform delivery of service for all cancer patients and advocated the benefits of locally-based specialist treatment, making it the most significant report for clinicians involved in the treatment and care of cancer sufferers. The specialist care was to be provided through the provision of designated cancer centres and cancer units. Research by Gillis and Hole (1996) indicated that specialist care resulted in a more favourable outcome for the patient. Just prior to the Calman/Hine report, a report was undertaken by Tait (1994) investigating the individual development of the breast-care nurse’s role. This showed that the role had developed according to client groups needs, within the

Evaluation of the breast-care service in Yorkshire 5

constraints of environment and time placed upon the individual. This study evaluated the service provision within breast-cancer centres and cancer units in Yorkshire by the BCN after the implementation of the Calman/Hine report.

patient. The perceived value of a home visit as opposed to a remote follow-up call will be determined. Finally, the prosthetic service provision will be assessed.

METHOD BREAST-CARE NURSES’ ROLE Following the implementation of the national screening programme the Breast Care Nursing Society encouraged the development of the BCN role in response to research which showed the benefit of a psychosocial approach to the care of women with breast cancer (Jary 1996). Areas to be continually addressed by the BCN were highlighted by Denton (1991). These included expanding choices and providing good-quality care. Spencer-Knott (1996) later suggested those services should be patient centred to encourage openness and honesty. Tait (1994) points out, although there are variations in individual practices, consistency in the development of the role is shown. The consensus of research shows that networking was greatly valued as it helped the BCNs to develop a uniform working approach, as advocated in the Calman/Hine report (1995). Investigations into the information needs of cancer patients (Graydon et al. 1997) suggest that women indicated a need for information no matter what treatment they received. Luker et al. (1996) established that women at diagnosis required information about survival and Spencer-Knott (1996) indicated that adequate information, both verbal and written, needs to be tailored to the individual needs of the patient. The general consensus of research stated by Luker et al. (1996), is that the BCN focuses attention on the newly diagnosed patient whereas patients indicate the need for ongoing information. During radiotherapy, Lawton and Twooney (1991), and Hinds and Moyer (1997) concluded that radiotherapy was a stressful time for the patient and extra support was valued. Mock et al.’s (1994) research indicated that psychological adjustment was improved in a group of women who had extra support, including a moderate exercise programme throughout chemotherapy. Although this study had limitations, it highlighted the benefit of a support network throughout treatment. After a mastectomy the patient is fitted with a prosthetic, usually by the BCN. Lugton (1997) suggests that providing a woman with a suitable prosthetic will help her to look and feel ‘normal’ again. This study proposes to evaluate the service and uniformity of care the patient receives from her BCN from diagnosis through all stages of treatment. The access and availability of the BCN at diagnosis will be questioned as will the value of the information distribution and its comprehension by the

As this research evaluation gathered facts and figures from a large geographical area and population, a postal questionnaire was chosen as the most effective tool for data collection. The questionnaire was divided into six sections. Section one was concerned with the outpatient’s facilities, resources and availability of the breastcare nurse with section 2 questioning the information given at diagnosis. Sections 3, 4, and 5 asked about home visits before, during and after treatment, and section 6 asked about prosthetic provision. In an effort to test the effectiveness of the wording, a pilot study of 25 questionnaires was carried out. No significant changes were required in the questionnaire. Each participating breast unit was sent a pack containing 20 questionnaires, stamped addressed envelopes, and 20 copies of a patient’s information letter explaining the nature of the project with a contact number for their own BCN. The explanation letter was overprinted with the familiar hospital logo of the NHS trust where the patient was being treated and the familiar name of the BCN for each unit was given for the respondent to contact if there were any problems. This provided a safety net for patients. Discussion of exclusions was universally accepted by the participating BCNs as patients who had a recurrence within 1 year or patients who the nurse felt were having an emotionally or physically difficult time with their treatment.

SAMPLE A total of 260 questionnaires were sent out to patients from 13 participating NHS Trusts across Yorkshire. The BCN from each trust randomly selected 20 patients who had been diagnosed with breast cancer from January 1997 to January 1998. The only access to the patients was via the BCN of the participating unit or centre, there was no direct contact with the researcher. The small sample number was universally agreed with the participating units as a sufficient percentage of the average new patient population. The total number was manageable and provided a snapshot of service provision.

ETHICS All research carried out in the NHS involving human subjects requires the approval of an ethics

6 Clinical Effectiveness in Nursing

committee (Department of Health 1991). Ethical approval was requested and given from each participating unit. It is important to remember that when the researcher is not involved in delivering the treatment to the participant, as in this evaluation, the clinicians in charge of their care need to know their patients are participating in a study (McHaffie 1996). Nurses and doctors are expected to protect their patients and be sensitive to their needs when asking them to partake in any research. In this evaluation, the BCN was primarily the ‘gatekeeper’ to the patients and also the treating clinician. In order to protect patients, at least one breast unit opted out of the study because it was felt that questioning the provision of home visits would raise the expectations of their patients who may then ask for a home visit. The BCN and their management felt this would be unfair to their patients as home visits were not possible. Confidentiality and anonymity of the individual respondent were guaranteed in order to encourage honesty. The explanatory letter stated that the individual hospitals would be identifiable with a code to the researcher so that information could be relayed to each unit and comparisons made. As the BCN role aims to provide the same core foundations, (support, advocacy, information resource etc.) as any specialist nurse, the results of this audit should be transferable to other clinical areas.

ANALYSIS Each Breast Care Unit was identifiable only to the researcher for analysis purposes by a code on the questionnaire. All replies were sent to the researcher’s hospital where the data were analyzed using a formic scanner and ‘Access’ programme.

RESULTS A total of 72% (187), questionnaires were completed, but not all respondents completed the questionnaire, so for some sections, the sample size is smaller. Not all participants had had chemotherapy, radiotherapy or surgery requiring prosthetic fitting, therefore those respondents could not answer questions from those sections. As all respondents were new patients within the first year of diagnosis, random selection would have included patients who had not yet completed treatment or yet been fitted with prosthetics. Table 1 shows the number of completed questionnaires returned by each hospital (note hospital M sent out 21 questionnaires). Section 1 was valuable in highlighting one of the main findings, which was that 91% of respondents had access to the BCN at diagnosis. Four patients declined the service. The reasons for not wanting to see the BCN were not known. The BCN was not

available for 9% of the respondents. Although at first sight 91% appears to be a good result, there are concerns for the patients who did not see the BCN, as their comments reflected. The BCN was available for 155 of the 170 respondents to this question with 2% of patients declining to see her. The BCN service was not offered to 9% of the respondents. Of the 151 patients who replied to the section on accommodation provision, 140 saw the BCN in a quiet place, but 11 felt that it was not private and 15 respondents were interrupted during their time with the BCN. Section 2 covered the provision of information and its comprehension by the patient. The most significant finding here was that, although it was possible to verify from hospital records that patients had received adequate information, clearly, the information was not understood by all patients. More importantly, some patients did not recall receiving any information. This led to the conclusion that more emphasis needs to be placed on the provision of comprehensive and accessible information leading to the fuller understanding of the material presented. The question of provision and understanding of information was answered by 182 respondents with 68% saying that they received information and 32% of respondents indicating that they received no information as shown in Table 2. Fewer people responded to the section about understanding the information with 113 replies. One hundred and one respondents understood the information and 12 did not with one respondent only partly understanding it. There was no correlation between age and understanding of the information. Written information was by far the preferred format of delivery with 102 out of 156 people preferring written information. Video and audiotape presentation was only preferred by 48 of the respondents and six indicated they would prefer another format, but they do not state what. Sections 3, 4, and 5 included questions relating to home visits from a BCN before, during and after treatment. An important finding of this section was that the provision of home visits was varied across the county. Some units clearly visit every patient,

Table 1 Illustration of hospital codes and responses Hospital

Replies

A B C D E F K L M N P Q R

12 17 9 15 11 18 13 17 21 17 10 16 11

Evaluation of the breast-care service in Yorkshire 7 Table 2

Patients who received and understood information

Written information given

Written information understood

Breast unit

Yes

No

Yes

No

A B C D E F K L M N P Q R

8 15 9 12 10 11 6 9 15 8 6 11 4

4 2 0 2 1 7 6 7 6 8 4 4 7

6 14 7 11 8 6 5 9 13 7 4 9 2

1 1 1 1

whilst some do not. There were 182 respondents to this question with 177 actually having had surgery and five having medication as primary treatment. A home visit prior to surgery was offered to 143 out of 180 respondents with some hospitals achieving 100% of visits and some achieving none at all. Of the 164 respondents having treatment, home visits were only offered to 57% with 6% declining a visit and 37% having no offer of a visit. Home visits are time-consuming, therefore respondents were questioned several times whether a telephone call would suffice. Only three patients indicated that it would. Section 6 asked about the provision of prosthetics. Of the 116 respondents who required a prosthetic, 74% felt that the range was wide enough and overall, 80% of the respondents did have a choice of prosthetic; however, 27 out of 103 respondents felt that the range was not wide enough. Respondents were invited to comment at the end of the questionnaire. Of the 91 that did respond, 73 were satisfied with their input from their BCN with 23 respondents feeling that more support was required in the provision of information and home visits.

LIMITATIONS The questionnaire was a successful method of data collection with a 72% response rate; however, when the numbers were filtered into individual hospitals, the sample size for some questions was sometimes small as not all respondents had experience of the various facets of the service. The results highlight the vagaries of using questionnaires and emphasize that they should only be treated as opinions not facts. This was particularly evident in the section relating to the provision of written information where it was possible to verify the patient’s responses against hospital records. The respondent’s replies contradicted the hospital records. There was no direct comparison made between the provision of service via a cancer ‘unit’ compared to a cancer ‘centre’ even though it was possible to

Partly 0 0

3 1 0

0

1 1 2

0 1 0

identify them from the data. However, service quality appeared equal in the evaluation, so there appears to be no variation of service quality between the two.

DISCUSSION The questionnaire data provided were manageable and adequate providing interesting and valuable results. The size was manageable and adequate, providing interesting and valuable results. The first section of the evaluation asked questions about the presence of the BCN at diagnosis, the appropriateness of the information received and satisfaction with the physical environment. Although the majority of respondents had access to the BCN at diagnosis, comments made by patients in the questionnaire emphasized the concerns of the 19 patients who had no access. Watson et al.’s (1988) research indicated that a patient who had the support of a BCN might be better informed and more able to make rational decisions about her treatment plan and Tait (1994), advocated that surgeons and breast-care nurses play a vital part in helping the woman to overcome the difficulties associated with choices of treatment. This evaluation has shown that the provision of home visits by the BCN varies widely from unit to unit. On the strength of Watson et al. (1988) and Tait’s (1994) research this function of the service needs reinforcing and prioritizing amongst units who are currently not achieving all their home visits. This study provides benchmarks on which to base service development, reinforcing the need for adequate cover for the BCN in order to provide continuity of care. In some units, the service provided by the BCN stops when the BCN is on holiday or is absent due to illness. It would be advantageous as units develop, to employ a second BCN to ensure a better continuity of service. It is suggested that in order to help women deal with their disease and understand the treatment, they should have adequate information (Graydon et al. 1997). In order to gain maximum benefit from

8 Clinical Effectiveness in Nursing

the information they need to fully understand it. Patients indicated that information that is understood is conducive to a good recovery (Suominem et al. 1994). Although the majority of respondents did understand the information material, a significant number did not. The evaluation indicated that for many respondents, insufficient literature was given at the time of diagnosis or, as Luker et al. (1996) suggests, right through the disease journey. There was no correlation between the age of the respondent and the level of understanding of the information and nobody indicated that English as a second language had caused them any difficulty. The compilation and distribution of easily understood and comprehensive information to all patients should be of paramount importance to all breast units. However, the evaluation has shown that currently some patients do not receive any information, some patients do not understand the information given to them and even when it is proven by record that patients have received adequate information, their recollection is that they never received information. It is therefore extremely important for BCNs to appraise their current information literature, however provided, in order to be certain that the message imparted has been understood. There is little point in producing copious amounts of printed matter if its impact on the patient is negligible. The perceived lack of information undoubtedly has implications for practice as it shows that the procedures used and information provided at present do not seem to be significant to the patient. The study shows that little information was given out by some hospitals. However, the researcher was able to access hospital records of one unit included in the study to cross check the replies. Information was given out to all the sample population, even though 50% had no recollection of receiving any. What the study actually shows is that the information that was given out had so little impact at the time that it is forgotten. Sections 3, 4, and 5 that questioned home visits before, after surgery and during treatment showed some variations in provision. It is suggested in the Yorkshire Breast Care Nurses’ Handbook (1996), that the ideal service should include home visits pre and post surgery and suggests that only a few breast cancer patients should be denied this part of the service. However, not many units scored well in this part of the survey. Overall, 79% of respondents received a home visit prior to surgery. The main reason given by the BCNs for not visiting was that there was not enough time between diagnosis and surgery date. Time constraints and geographical locations can make home visits difficult so it seemed valuable to ask whether a telephone call would suffice. This question was asked three times. Overwhelmingly, the response was that a phone call would not have sufficed. Patients obviously put a very high value on home visits, but the study has shown that almost 20% of patients in the survey did

not have a home visit. It is understandably not always easy to visit 100% of the patients, but it should be done. There may be problems with geography, time constraints and cover, but should we deny the patients a part of the service, which they perceive to be very valuable just because it is difficult to achieve? Home visits, though more time-consuming, are appreciated by those who experienced them and are always preferable to phone calls. There are possible implications for staffing levels if every unit were to introduce home visits. Looking at the bigger hospitals, BCNs from cancer centres with larger caseloads indicate that they are unable to offer home visits to every patient because of the volume of patients. Indeed, one unit declined to participate in the study because it was felt that asking about the provision of home visits compromised their service and may give the patient unachievable expectations of their service. This last issue raises very serious concerns.

CONCLUSIONS The evaluation has provided a valuable snapshot of the service provision throughout the area and given all the breast units some pointers towards potential areas for improvement, particularly in the area of information provision. Breast-care nurses are valued team members at diagnosis and should be available to all patients at that time. Home visits are greatly valued and should be undertaken even if it is difficult to do. Much of the service provision has been shown to be uniform and well received (85% of respondents indicated they were satisfied or very satisfied with their treatment). However, wide variations came to light in specific areas of the service. The evaluation highlighted the inconsistencies in the provision of information and especially the impact the information has on patients. This has resulted in the development of a new personalized information folder produced by the YBCNG. A primary audit of the folder has proved favourable with the patients. It would not be unreasonable to suggest that all cancer nurses working in specialist areas, i.e. colorectal, lung, could benefit from the findings of this evaluation to determine the efficacy of their own practice.

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