Breast Cancer Patient Stories Project

Abstract

Objective.

It is estimated that there are almost half a million women living with or beyond a breast cancer diagnosis in the UK, often referred to as the breast cancer survivor population. We report on the setting up of a dedicated breast cancer and menopause symptoms service (BCMS), and present results from research undertaken with breast cancer survivors with the aim of obtaining their perspectives on the BCMS service.

Method.

An action-oriented approach incorporating improvement science methodology has been used to help develop and drive changes to support a high standard of NHS patient care delivery for women with breast cancer within the BCMS setting. Evaluation was undertaken of this innovative service using qualitative methodology, and included discussion within a focus group setting, patient consent to record discussion, followed by thematic analysis of transcription.

Results

Women who have survived breast cancer identified a need for specialist support to help improve their quality of life, which is also affected by menopause type symptomology. This support can be provided within the BCMS service setting. Our recommendations are that the BCMS service model is incorporated into any regional or national breast cancer patient pathway and service redesign work in place.

Conclusions

Breast cancer survivors would support the setting up of a BCMS service, and would actively help raise awareness and market this service.

Keywords

Menopause breast cancer NHS services improvement science patient stories

Introduction

There are about 1.8 million people living with and beyond a cancer diagnosis.¹ There have been improvements in survival and mortality rates in recent years, but generally poorer cancer outcomes are reported for England.^2,3 English survival rates continue to fall below the best performing countries in Europe, with the exception of breast cancer.² It is estimated that there are almost half a million women living with or beyond a breast cancer diagnosis.^1,3,4

The 2011 Department of Health document ‘Improving Outcomes: A Strategy for Cancer’ aims to support future work to help the reformed NHS deliver cancer outcomes that are among the best in the world.¹ The strategy proposes to drive NHS activity underpinned by innovation and service development to achieve cancer survival rates in line with the European average, which would save a further 5000 lives every year in England.¹ The challenges for NHS health professionals will then be to ensure everything is done to allow survivors of cancer and in particular, breast cancer survivors^5–8 to live healthily and with as good a quality of life as is feasible.

In this paper, we describe the setting up of a dedicated breast cancer and menopause symptoms service (BCMS) after identifying a clinical need for the service for breast cancer survivors. An action-oriented approach incorporating improvement science methodology^9–11 was used to help develop and drive changes to support a high standard of NHS patient care delivery for women with breast cancer within the BCMS setting. We report on the evaluation of this innovative service undertaken as part of a larger NIHR Collaboration and Leadership for Applied Health Research and Care (CLAHRC) fellowship project,^12–14 with recommendations that BCMS services are incorporated into any regional or national breast cancer patient pathway and reconfiguration work in place.

Background

With close working between a specialist outpatient menopause service and the hospital's breast unit, a dedicated BCMS clinic was piloted in late 2006, with the service formally established by April 2007.^15–18 The menopause service is also supported by a pharmacist-led medication management clinic.^19,20 Patients are seen on the third Thursday of each month. One of the weekly menopause clinics was converted to a dedicated BCMS, so in essence the service has been operating at no additional cost to the NHS. Referrals are for patients with either a personal or family history of breast cancer, seeking specialist menopause management advice.¹⁵ The BCMS team engaged in action cycles of improvements^15–18 as the service was being developed. This included ensuring competency and optimizing patient management with multidisciplinary team (MDT) patient case discussions at the end of each clinic, close working with the breast team, development of BCMS patient history taking proformas, setting up of a BCMS database, Hospital Drugs and Therapeutics Committee ratified BCMS service prescribing guidance and patient satisfaction questionnaire surveys. However, the service had been established based on a clinically identified need, with early referrals coming mainly from the breast team.¹⁴ More research was needed to understand whether breast cancer survivors felt that there was a need for the BCMS service. It would be informative to explore what support breast cancer patients generally received if and when they suffered from menopausal symptoms^5–8,14 during their breast cancer journey, and whether there were any similar services elsewhere in the UK. We have previously reported findings from focus group research undertaken with Caucasian and Asian women with breast cancer¹⁴ not aware of the BCMS service and who spoke about support offered, if any, when they struggled with menopausal type symptoms.

Ethics committee approval for the breast cancer patient stories project covered the running of three focus groups. Two were run with breast cancer survivors who were BCMS service naive, and we have reported on this work previously.¹⁴ This paper reports on the findings from the third focus group, run with women who had attended for consultation at a BCMS clinic. This further research was supported by the hospital executive team, as it was in line with national directives that ask organizations to ensure patient and public involvement^21–23 within service development work. Findings from this work would help add weight to support a case for local service commissioning provided results showed that breast cancer patients felt there was a need for a BCMS service. Study aims were to invite breast cancer patients who had attended for consultation at the BCMS service to present their story, to speak about any support they had had for menopausal symptoms during their breast cancer journey, what their experience of the BCMS consultation had been and what improvements could be made to the BCMS service.

Methods

Women with breast cancer or who were at high risk of breast cancer and who had attended for consultation at the BCMS service were targeted for this study. Every second ‘new patient’ on the clinic lists from January 2008 to December 2009 was called on the telephone. In line with hospital policy to ensure balance between non-clinical patient contact versus minimal invasion of privacy,²³ we stopped making contact once around 20 women had expressed an interest in taking part. These women were asked if it was a convenient time to talk. Those who felt well enough and were free to talk were informed about the project, and asked if they would be happy to help with the study. A study information sheet was mailed to patients who accepted the invitation to participate, with the proviso that they could still decline once they had read the information sheet. Patients were provided with details of venue and time when the focus group would take place in the same mailing and informed that the discussion would be recorded. As patients may attend various units at the hospital and see their general practitioner (GP) at the same time, these women would be invited to speak about their breast cancer journey, and then focus on any help they had with managing their menopausal symptoms. To ensure an understanding of menopause symptoms, four copies of a list of menopausal symptoms were placed on the table around which the women sat for the discussion. On the day, the patients were informed that their breast cancer journey stories would be recorded and their consent for this was reaffirmed. They were informed that they could request deletion of any sentence at the end of the discussion, if they so wished. Participants were informed that all reports and publications from this project would be anonymised. After the focus group session, the recording was transcribed, followed by thematic analysis.

Results with Discussion

Forty patients were contacted in total, with half saying they would be happy to support the project. Eight of these breast cancer patients confirmed their intention to attend the focus group session, but on the day, three women attended and took part in the discussion. Reasons given by the five women who did not attend included not feeling well on the day, with one delayed at work and therefore unable to get to the meeting on time and another patient who could not come as her husband had a hospital appointment himself and could therefore not drive her in. All five women said they would be keen to attend a future focus group session.

The three women who attended included a Caucasian patient with a family history of breast cancer, and an Asian and a European (with a Muslim husband), with personal history of breast cancer. They provided demographic data prior to start of the discussion (Table 1). They presented their breast cancer journey stories and spoke about their satisfaction with the service and highlighted some improvements that could be made.

Table 1

Demographics of project participants

ID	Breast cancer status	Age	Ethnicity	Diagnosis of breast cancer - year	Menopause status
Pt 1	Family history/ high genetic risk	53	Caucasian	Early 2009 [Elective double mastectomy and bilateral-salpingo oophorectomy]	Surgical menopause 2009
Pt 2	Personal history/ first breast cancer	58	Asian	July 2009	Surgical menopause TAH + Single oophorectomy 2004 Single oophorectomy 2006
Pt 3	Personal history/ first breast cancer	63	European	End 2004	Postmenopausal/menopause four years before breast cancer diagnosis

What did these breast cancer survivors tell us?

In general, these patients struggled with menopause symptoms and getting help. Throughout their breast cancer journey they had difficult decisions to make, had to ask for more information and checked with various sources which included Internet searches and speaking with friendly health professional colleagues to help their decision. GPs were not able to help with options for control of menopause symptoms and patients expressed some concerns with regards to their prescribing knowledge.

Where did the BCMS service do well?

Patients were impressed when they were told that the menopause unit team would discuss their case and would liaise with the breast unit to help management decision-making.

Patients felt that they were provided with management options and choices. This included the BCMS health professional being able to provide some ‘answer’ to breast cancer patient request for management of their menopause symptoms whether this was for hormone replacement therapy (HRT) or non-hormonal options.^24–26 The participant in the discussion group, who said she had made a strong case for use of HRT, described her menopause symptoms as a

tropical storm … [that were] … affecting self esteem … [and where she felt she] could have lost… job due to loss of confidence …

She felt that she did not get support from other units where she had asked for help, saying in her own words.

… Trust XX did not say much, been to the GP and everybody sort of shakes their heads and says you have high risk of breast cancer, so I started swallowing a few, you know, over the counter products…

Another patient spoke about being given various choices and feeling that she was in control and could decide what option she preferred. Patients spoke about being ‘taken seriously’ and having both medication and non-medication choices, including counselling.

… I felt I was taken seriously and not kind of randomly given some kind of treatment…

The other interesting point that came up during the discussion was around improvement of quality of life, an aspect which has also been raised by other researchers.^5,6,8 The hospital's Macmillan team had undertaken an audit project to evaluate the BCMS service. They phoned the first 18 patients they had referred to the BCMS service and reported that 7 (39%) said that their quality of life had improved after their BCMS service consultation (personal communication: Anna Veal). Interestingly within this patient stories project one patient said that her quality of life was much better, providing further contextual information on how the consultation had helped her.

… loads better, … [then going on to say] … its something about knowing if anything changes…, you know there are people who can help sort it out. I had this feeling off, gosh, you know I am just on my own and there's all these horrible symptoms, and I am kind of unravelling …

Where could the BCMS service improve?

The two areas highlighted for improvement included ‘distant’ reception staff and the need for assistance with completion of the unit's symptom assessment chart…

… you get that pink form … you know symptoms, … didn't really explain it and you find yourself, libido, so I don't know, it's a bit like full on without explanation but I kind of understood what it was for, so … not that I am trying to … we ended up sitting there and laughing about the whole thing …

At the time of this project, our regular reception member of staff had been on maternity leave. Therefore the service had rotational staff attending the clinics over 2009, and this may have been viewed by patients as reception staff not being welcoming or knowledgeable. To help address these issues a volunteer with cancer has been recruited for the BCMS service. The volunteer is tasked with being a welcoming face, sitting and chatting with patients in the waiting room, and offering to assist with information to help completion of the unit's menopause symptom assessment chart on request. The cancer volunteer is also able to flag up any other issues that patients may highlight in order for the BCMS team to help improve the patient experience.

The need to market the BCMS service

Patients were asked for any final comments before the tape recorder was switched off. The following comment came up without any prompting. The patients discussed the need for marketing of both the menopause and BCMS services at this point, with one patient offering to ‘go out with a banner’ for the service.

… because I have been marketing you quite well with people my age … and people have no idea that… in [this area]

When you say you have been marketing?

… lots of people moaning about menopausal symptoms, so [asks] has your GP referred you to this clinic, and they say no, I have never heard of it, … I just think there are lots of women who need a clinic like yours

… and you are talking about a clinic for general menopause?

… general menopause …

whereas the specialized breast cancer menopause service:

… all I am saying is that I don't know what I would have done if you hadn't been there … drifting around with hot flushes, … its started where people stop coming to work, … and I thought how am I going to do this, … and it could have ended up costing me, you know ruining my confidence, so I think its terribly important…

Other suggestions from patients on the theme of marketing the service included:

‘… put up posters …’, ‘… link with Macmillan …’ and accept referrals from out of area …

…my sister who … had breast cancer so she's on her own with it, uhm …, she just can't find the equivalent, she is saying to me can I come to your clinic … you know, can I get referred … I've realized that for people outside the area this is a very special clinic … you know with various cuts and things… you know I'll go out with a banner if you like.

Work in progress - the case for commissioning

The Department of Health's document ‘Improving Outcomes: A Strategy for Cancer¹ considers three mutually reinforcing principles to underpin future work in order to achieve their target of saving a further 5000 cancer patient lives per year. The strategy proposes that NHS and social care professionals ensure that no decisions for care are made without the patient or service user's input,²⁷ that focus is on ensuring improvements in care outcomes that matter rather then the care process being simply one based on process measures or targets,^27,28 and with empowerment of local organizations and professionals so they can drive improvements in service provision with patients receiving care of a high standard and quality.^1,29 The establishment and development of the BCMS service has incorporated these principles. In summary, our dedicated BCMS service has been operating since late 2007 at no additional NHS cost and was developed using a clinical governance approach. With the current NHS drive to move care into the community, breast cancer patient specialist follow up appointments are to be reduced from five years to one year, but with patients receiving annual mammograms for the five years. Women who have survived breast cancer will now receive most of their care from their GPs and associated primary care professionals.

Data from the NW London Cancer Network shows that there were around 12,000 survivors of breast cancer at the end of 2007. This would be the catchment population of the BCMS service if established as a regional service, and encapsulates eight primary care organisations. It is important to remember that these patients need holistic care, with the needs of breast cancer survivors encompassing more than just menopause symptoms.^14,28 Looking at potential activity levels for a BCMS regional service to support primary care, in 2007 in North West London sector, there were 1013 diagnoses of breast cancer. A referral rate to BCMS of 30% would lead to an expected 304 new patients being seen, and a referral rate of 50% would lead to 506 new patients. As at 31 December 2007, 12,182 patients in NWL sector were registered as breast cancer survivors and still alive. From this total, an expected 3655 patients from a referral rate of 30%, and an expected 6091 patients from a referral rate of 50% could be seen. Discussion needs to take place with the newly forming Clinical Commissioning Groups on how this service can be integrated within patient pathway redesign, with funding for such a service. The BCMS service is now starting to receive cross referrals for advice on vasomotor symptom control in men with prostate cancer and on androgen deprivation therapy. Expanding the BCMS service therefore to provide care for prostate cancers and also for gynaecological cancers could be explored.

Study limitations

A limitation of this study is that only three women attended on the day for the focus group session. Five women, unable to attend at the last minute, indicated that they would attend a future session. However the ethics committee had agreed to three focus group sessions, one run with Caucasian women with breast cancer who attended a monthly support group,¹⁴ one run with Asian women with breast cancer also attending a monthly support group¹⁴ and the third focus group with women who had attended for consultation at the BCMS service, the findings of which are reported in this paper. With due regard to research governance, we were unable to run a further focus group session. We had also considered the pros and cons of undertaking a BCMS service patient satisfaction questionnaire survey at the outset. However as the hospital was undertaking various general service questionnaire surveys, the feeling was that it would be kinder to limit these so that hospital patients did not feel overwhelmed with questionnaires. As this project was part of a NIHR CLAHRC fellowship project, we were able to present and discuss the findings at a CLAHRC research meeting. The value of patient stories was highlighted.^21,22,30,31 As Wilcock et al.³¹ state, narratives from patient stories develop understanding grounded in experience. Those delivering care can interpret narratives using their own clinical and professional knowledge and experience to create better and new ways of meeting patients' needs. Interestingly, improvement methodologists feel that using their own expert knowledge, health and service improvement professionals can identify needs that sometimes even patients and carers do not know that they have.^21,32 In our work, these three patient stories provided information-rich data that helped improve understanding of the need for the BCMS service, and allowed for reflection about any changes needed to improve the patient experience when they attend the outpatient clinic.

In summary

We have previously reported that Caucasian and Asian women with breast cancer identified a need for support to improve their quality of life during their survivorship phase, and this included support for menopause symptom control.¹⁴ In fact, these women had said that they were not sure whether the symptoms they suffered from were due to the menopause or their breast cancer condition. Some of these survivors said that they were just so glad to be alive, that they accepted and lived with their poorer day to day quality of life. Many of these women had little clinical support and self medicated, and we have highlighted safety concerns with use of some of these medicines (progestogens or ayurvedic complementary medicines) for the control of menopause symptom control in breast cancer due to the paucity of data in this field.¹⁴ Findings from the work we have already reported¹⁴ and this paper indicate that breast cancer survivors would support the setting up of a dedicated breast cancer and menopause service. Any business case for service commissioning needs to ensure provision of a high standard of safe and individualized patient care. The BCMS service model incorporates formal, close and collaborative joint working between the menopause service and breast services, is supported by a medication management clinic and delivers on quality criteria for safe patient care. With the current drive for delivery of NHS care by primary care, and with an increase in number of breast cancer survivors, our recommendations are to incorporate the BCMS service model within any patient pathway redesign work and for the service to be duly commissioned. A regional service in N W London, based on data from the Cancer Network, can expect to provide care for around 3600 breast cancer survivors annually based on a 30% referral rate (Table 2).

Conclusion

Findings from the Breast Cancer Patient Stories project show that breast cancer survivors support the need for a dedicated breast cancer and menopause service. These patients also presented their views on how the service should be marketed. Our recommendations are to incorporate the BCMS service model within any patient pathway redesign work and for the service to be duly commissioned.

Footnotes

Acknowledgement

Information Department, N W London Cancer Network.

Competing interests: None declared.

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