A new approach to developing and designing information for patients has been hailed as a “flagship study”, Dr Tony Stevens told the 3rd European Breast Cancer Conference in Barcelona today (Wednesday 20 March).
Dr. Stevens, a Research Associate with the Sheffield Palliative Care Studies Group at Sheffield University, said he and his team had decided to involve patients right from the beginning in the production of an information booklet about medical research and clinical trials.
He said: “Traditionally, patient information has been designed by professionals, but we put consumers at the forefront of this study and they had control over the format and content of the final document.” Representatives from five breast cancer support groups in the North Trent region of northern England joined breast care nurses and other primary and secondary health care professionals to review the basic outline of the information proposed for the booklet, then the professionals were asked to refine the information and finally the consumer groups reviewed the revised information. At each stage they were asked to comment upon the design, content and potential usefulness of the information.
The resulting booklet is easy to read (it has a reading age of 12 years), is aimed at both patients and carers, is not specific to any disease, meaning that it can be used in a variety of situations, and it conforms to the UK National Health Service Guidelines on patient information.
The booklet is being distributed in four breast units in northern England as part of a randomized trial to see whether it has any effect on the numbers of patients who join clinical trials and how they decide whether to participate or not. Many patients have a limited knowledge about the process of research and may decide not to enter clinical trials because they are unsure of what is involved.
Dr. Stevens said: “Feedback from recipients has been very positive, including unsolicited letters and telephone calls. One patient said ‘It is great, everybody should be given one’. Professor Rob Coleman of the North Trent Cancer Research Network has said that the booklet is ‘excellent’ and that it is a ‘flagship study’.
“An evaluation of the process of the booklet’s development showed that the approach was inclusive (taking account of the opinions of patients and carers normally excluded), it enhanced patient understanding of research, it reinforced the principle of informed consent and it was a sensitive and focused way of developing consumer information.”
HELPING GPS TO HELP THEIR BREAST CANCER PATIENTS
General Practitioners in Melbourne, Australia, are better equipped to meet the needs of breast cancer patients following a project which plugged the gaps in their knowledge and experience, Dr Josie Samers told the conference today.
The Inner and Eastern Melbourne BreastCare Consortium, which is made up of public and private hospitals and GPs, conducted a study which aimed to assess referral patterns, communication between specialist breast services and GPs, and GP education, support and resource needs.
A questionnaire was sent to 450 randomly chosen GPs and 104 replied (a 23% response rate). Dr Samers, a GP and the project’s officer, said: “The response rate appears low, but given the length of the 27-point questionnaire, the demands on GPs’ time, and the fact that GPs were not paid for their time to complete the survey, we felt this response rate was as expected. Also, the concordance of responses between the three divisions of General Practice we surveyed was high, indicating that the results were representative of the views held by GPs in the area.”
The responses showed that, on average GPs have one patient a year diagnosed with breast cancer in their practice, and that while GPs were generally satisfied with communications with the specialist breast services about the initial stages of diagnosis and treatment, 41% said that a phone conversation with a specialist during the patient’s hospital treatment would improve the continuity of patient care. Half the GPs surveyed requested faxed notification of admission and discharge from hospital. Recent advances in breast cancer management was identified by 65% of GPs as an area in which they required further professional development, and a massive 92% asked for a resource directory which listed available breast services in their local area.
As a result of these findings, the Inner and Eastern BreastCare Consortium Breast Services Enhancement Program arranged three education seminars at which surgeons, medical and radiation oncologists and breast care nurses presented GPs with an overview of the recent advances made in breast cancer treatment and management. This gave the GPs an opportunity to meet fact-to-face with the local breast service specialists. An information kit which included best practice guidelines and a local resource directory was given to GPs attending the seminars.
Dr. Samers said: “An evaluation of the seminars indicated that GPs not only furthered their clinical knowledge, but also gained an understanding of the many services available to women and their families, such as the breast care nurse service, genetic counselling clinics and lymphoedema services. The project fostered the development of links between the specialist breast teams and GPs, and GPs also indicated that following the seminar they were better equipped and more confident in meeting patients’ needs during the treatment phase and beyond.”
PATIENTS THINK NURSES OFFER BETTER FOLLOW-UP BREAST CANCER CARE THAN DOCTORS
Specialist breast cancer nurses offer more supportive, patient-centred and cost-effective follow-up care for breast cancer patients than doctors, according to a study carried out at the Royal Marsden Hospital in London, the conference heard today.
Mrs. Emma Pennery, senior clinical nurse and honorary clinical research fellow in the specialist breast unit at the hospital, said the study revealed that when doctors conducted the follow-up care the examinations were hurried, investigations were not always reassuring, lack of continuity was unacceptably poor and most women felt uncomfortable expressing emotional concerns or asking questions.
She said: “Meaningful care depends on the recognition of patients’ needs and development of cost-effective, patient-focused interventions. Patients have multiple ongoing psychosocial and physical needs after treatment, yet follow-up in a busy outpatient clinic does not provide the opportunity for comprehensive care and support.”
By contrast, patients who saw the specialist nurses were much more satisfied. “The key areas of improvement were greater continuity because they saw the same person each time, and more attention was paid to emotional and informational needs,” said Mrs Pennery.
One hundred patients were recruited to the study, with 50 patients being randomized to the nurse-led arm of the trial, and 50 to the traditional doctor-led arm of the trial. The women answered two questionnaires, Functional Assessment of Cancer Therapy and Your views of Follow-Up Care. The data collected were analysed to show the relative benefits to quality of life and patient satisfaction, and the comparative costs of the two approaches.
Mrs. Pennery said: “The doctors are seen as being there to focus on the physical examination, whereas nurses answered questions more, and discussed psychosocial needs about issues such as altered body image and menopausal symptoms. The study has revealed the differences between what doctors and nurses offer, and has identified nurses as potentially the more appropriate professional to enhance future follow-up care.
“The difficulty is that there are not enough trained nurses to take on the whole of follow-up. Routine follow-up as it exists is not cost effective and does not have proven efficacy. We recommend an alternative model that properly addresses the needs of women and the issues that hinder their recovery from breast cancer. This might involve an open access system, or one that collaborates between GPs and specialist nurses, the aim being to develop a model of care that ensures women’s needs are met within available resources. Central to an alternative approach is the transfer of emphasis away from a costly, medically orientated cancer surveillance model, which has questionable efficacy, to a more patient-centred, supportive and humanistic model of care.”
MEN NEED SUPPORT TOO
A programme which offers support to men whose female partners have been diagnosed with breast cancer is proving to be a success, it was reported at the conference today.
So far 52 men have taken part in the ARC Breast Cancer Partners Programme, and 47 have completed it, according to Mrs Ursula Courtney, director of the ARC Cancer Support Centre in Dublin, Ireland.
The programme was first piloted in July 1998 following a national survey of Irish men which identified the educational and emotional support needs of men whose partners have breast cancer. Nine programmes have been completed since then.
Groups of no more than six men at a time join an educational class which has the added advantage of enabling them to meet other men in a similar situation. The programme is divided into four main areas which deal with the facts and myths surrounding breast cancer, and the physical, psychological and social aspects of breast cancer.
Mrs. Courtney said: “Key findings from the study show that these men have an increased ability to cope with aspects of breast cancer treatment, their increased knowledge base has allowed them to feel involved, and the fact that the meetings have such a small number of participants helps to lessen the feelings of loneliness and isolation which the men had been experiencing prior to the programme. Over 90% of men have admitted to an improvement in many aspects of their marital relationship and describe an increased closeness with their partner.”
The five men who withdrew from the course did so for a variety of reasons: two had domestic/childminding problems, the female partner of one died, one had an irretrievable breakdown in his relationship with his partner, and one was too shy to cope with the group setting.
The programme is run two to three times a year and is advertised through the ARC Cancer Support Centre, through hospital breast clinics and breast surgeons, radiotherapists and oncologists. Mrs Courtney assesses the suitability of the potential participants for working in a group and invites six men to take part. The other men are offered a one-to-one service or a series of counselling sessions with their partner.
Mrs. Courtney said: “There are limitations to the study, which include the ‘cherry-picking’ of suitable participants. This ensures that the numbers remain limited, but it also ensures that the most suitable applicants are selected who are most likely to complete the programme. Another limitation is the fact that the partners of the men selected may be at any stage in their breast cancer treatment. There are no age barriers for the men and the age range has been from 32 to 73 years; a more homogenous age group might yield different results.”
She hopes to expand her research so that the support programme could include women in lesbian relationships whose needs would be very different from their male counterparts. Another area of research could involve exploring the effects of such a support programme at specific stages of the breast cancer diagnosis. For instance, one could be run for a group for men under 40 years old whose partners had been diagnosed with ductal carcinoma in situ (DCIS). “The potential is limitless,” said Mrs. Courtney.
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