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A nurse-led e-mail service for breast cancer information

Internet use has increased exponentially in the past decade, with the provision of medical information and support forming two of its more important functions (Till, 1996). Women with breast cancer have been shown to have a greater need for information following primary treatment (Raupach and Hiller, 2002). The internet can play a part in the search for this information and also has an important role to play for cancer survivors after their treatment has ended (Satterlund et al, 2003).

Abstract

VOL: 101, ISSUE: 39, PAGE NO: 36

Maria Leadbeater, BA, RGN, Onc Cert, is online services manager, Breast Cancer Care

Internet use has increased exponentially in the past decade, with the provision of medical information and support forming two of its more important functions (Till, 1996). Women with breast cancer have been shown to have a greater need for information following primary treatment (Raupach and Hiller, 2002). The internet can play a part in the search for this information and also has an important role to play for cancer survivors after their treatment has ended (Satterlund et al, 2003).

 

 

Background
The website of the charity Breast Cancer Care (www.breastcancercare.org.uk) is currently used by more than 3,000 people a day as a source of information and support.

 

 

Nurses have a long history of ‘being there’ for people who are in need of health care (Cudney and Weinert, 2000) and in April 2002 Breast Cancer Care established an e-mail service called ‘Ask the nurse’ to provide people with the option of e-mailing their questions or concerns to a team of specialist nurses.

 

 

All e-mail responses from the nurses are peer-reviewed before being sent back to the client. The nurses follow clear guidelines that detail how they should respond to queries and concerns to ensure the information is evidence-based.

 

 

A response is guaranteed within three working days, with the majority of queries being answered within one day. It is generally considered that client satisfaction decreases as response time increases (Carr et al, 2004).

 

 

It has been suggested that the internet will never supplant a personal consultation with a health care professional (Pleat et al, 2003), and while there is little published information on nurse-patient communication via the web (Tarpey, 2003), our experience demonstrates that e-mail can provide personal information that is useful to the client.

 

 

As the service grows, with more than 120 questions being sent in each month, an evaluation was undertaken to find out why people accessed this service, the type of information they requested and their overall level of satisfaction with it.

 

 

Method
An e-mail questionnaire was attached to the end of e-mail replies from the nurses. The questionnaire was based on the International Cancer Information Service’s short survey method of customer satisfaction (Thomsen, 2004).

 

 

It was decided that, because of the sensitive nature of the questions sent to the ‘Ask the nurse’ service, questionnaires would not be re-sent to people who did not reply. Therefore the sample size remained comparatively small, with 31 replies received out of 272 e-mail questionnaires sent, giving a response rate of 11 per cent.

 

 

Results
All respondents to the questionnaire reported that they were completely satisfied with the service they received.

 

 

‘A good service. I wish I had it three years ago. I am a nurse but still have lots of questions.’

 

 

The service was reaching people who were not going to other health care professionals with their questions (Fig 1). A large number of people (74 per cent) were using the service instead of going to a doctor. The reasons given for this were mainly that they had problems getting access to their doctor and the e-mail service was available 24 hours a day. Other respondents indicated that they felt more comfortable asking what they described as a ‘trivial’ question by e-mail, as the service is seen as more informal and low-key than standard primary health care consultations.

 

 

‘I was confused as to my options and was unable to contact my GP.’

 

 

‘Not due to return to the hospital for nearly a year, wished for a sooner reply than that!’

 

 

‘Don’t like going to the doctors for advice.’

 

 

Clarification purposes

 

 

A number of people (10 per cent) indicated that they were using the service after seeing their doctor (see Fig 1). One female participant described how she had felt ‘in shock’ at the clinic and was using the service to try and make sense of what she remembered being said.

 

 

Another reason given was wanting a second opinion from professionals who were impartial and were also anonymous.

 

 

‘I couldn’t get a clear answer from my doctor.’

 

 

‘I had already asked all the health professionals looking after me.’

 

 

Others (16 per cent) were using the service before going to see their doctor and they described wanting validation that their problem was not trivial and that they were taking the right action in making an appointment to see their GP.

 

 

In other words, using the service empowered people to take steps to address their problem.

 

 

‘I was unsure as to whether the GP would think I was wasting their time.’

 

 

I wanted to know whether I could expect my current symptoms to resolve themselves, but didn’t feel it was urgent or necessary to see a doctor so this is a convenient option.’

 

 

Types of information requested

 

 

The main type of information requested was from people worried about:

 

 

- A problem or change in their breast (26 per cent);

 

 

- Adjuvant treatment (22 per cent);

 

 

- Secondary breast cancer (19 per cent);

 

 

- Problems with diagnosis (13 per cent);

 

 

- Hereditary breast cancer (6 per cent).

 

 

This reflects the types of questions the service receives each day.

 

 

The service was considered both novel and effective. It was viewed as a non-threatening, facilitated access point to a professional opinion.

 

 

‘I wanted to know the opinion of a total outsider, someone who did not know me personally but was also a professional nurse.’

 

 

When asked to whom they would have asked questions if this service hadn’t been available (see Fig 2, p40) respondents said the following:

 

 

- 40 per cent would have asked their doctor;

 

 

- 21 per cent would have asked a nurse;

 

 

- 6 per cent said either a doctor or a nurse.

 

 

However, 33 per cent of people said that they had no idea who else they would have gone to with their question:

 

 

‘I am a relative and have no contact with health people.’

 

 

‘Had no idea who to turn to for advice.’

 

 

Sources of further information

 

 

All questions are replied to by a specialist nurse, who may also recommend a specific page of our website or information from other organisations such as the Breast Care Campaign or CancerBACUP. Other breast cancer care services may be offered, such as the freephone helpline, peer-to-peer support or the internet-based message board.

 

 

It was reported by 29 per cent of respondents that they went on to use the web pages recommended in their reply and 10 per cent used the helpline, with one woman describing this support as tremendous. The majority of people had not used any other services. Some typical replies were:

 

 

‘I received a full reply and an offer of future help.’

 

 

‘I get weepy if I try to talk about things at present.’

 

 

All the participants reported that they would use the service again.

 

 

‘The response I had was very prompt. I really appreciate the personal comments that were made and my concerns were directly dealt with rather than just being referred on somewhere else.’

 

 

‘It’s great to know such an impressive service exists.’

 

 

Discussion
People’s use of e-mail is clearly increasing both at work and at home, and from anecdotal evidence it seems that health care professionals are already giving some patients the option of e-mailing them directly.

 

 

Advantages of e-mail

 

 

Access to the internet and e-mail is still a problem for some socially disadvantaged groups. This digital divide may exclude some patients, but other commentators have argued that communicating online could lead to greater patient equality (Rozmovits and Ziebland, 2004) and that e-mail has value beyond patient communication by removing some of the barriers that currently exist between patients and doctors (Waldren and Kibbe, 2004).

 

 

Virtually all patients have difficulty reaching their doctor by telephone (Delbanco and Sands, 2004) and studies have shown that more than 50 per cent of patients would like to use e-mail to communicate with health professionals (Sittig and Hazelhurst, 2001). E-mail has the advantage of being a fast and convenient way of contacting a health professional. It also has great potential for people who are shy or deaf (Eminovic et al, 2004) and it has been demonstrated that some doctors can communicate more effectively via e-mail with patients who are unable to communicate verbally but who are accustomed to using chat rooms and the internet (Patt et al, 2003).

 

 

Suitability for breast cancer information

 

 

It has been suggested that there is a therapeutic value in writing down your experience of breast cancer (Hoeybye et al, 2004). This contention is borne out by the experience of many of our clients at Breast Cancer Care.

 

 

Although this was a small study and the response rate was also small, the responses gave valuable information about why people use the service and what they like about it.

 

 

Breast cancer is one of the most searched-for topics on the internet (Meric et al, 2002) and as many as 40-45 per cent of people say that they access medical information via the internet (Metz et al, 2001).

 

 

While easy access to information is a good thing, it can raise more questions and concerns among patients. Any website provider should be aware of their responsibilities to their clients, and access via an e-mail service means that any concerns can be raised directly.

 

 

People are now followed up for around two years after breast cancer treatment. For many years after their treatment has ended, the people who contact Breast Cancer Care will have questions that need answers. E-mail is clearly an effective way to ensure that people have easy access to health professionals to address their continuing concerns.

 

 

Reservations

 

 

Clients need to be educated as to what is possible or ethical in relation to diagnosis via e-mail (Eysenbach, 2000) and it is not really clear from the review of its definition what people expect from ‘e-health’ (Oh et al, 2005).

 

 

However, e-mails are time-consuming and can take twice the time of a telephone conversation. In addition, there need to be guidelines or local protocols for answering client e-mails, as responses will vary (Eysenbach and Diepgen, 1998) and it is important that the same standards are met with this type of communication as would apply in a face-to-face or telephone consultation.

 

 

The quick e-mail responses that many of us use when communicating with colleagues and friends may appear abrupt to clients and (from our experience) while e-mail can be effective in communicating, it is important to develop good writing skills that can convey information, support and empathy in equal measure.

 

 

Conclusion
Use of e-mail and the internet is increasing and this small study shows that they can offer advantages in the provision of breast cancer information.

 

 

The reasons for using the service described by people in response to our questionnaire included a need for clarity either before or after a diagnosis and as an alternative to seeking advice from a health care professional. People also said that they used the service because it was accessible and convenient.

 

 

There are, however, potential problems that health care professionals need to be aware of before they offer this type of communication channel to their patients.

 

 

This article has been double-blind peer-reviewed.

 

 

For related articles on this subject and links to relevant websites see www.nursingtimes.net

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