The information needs of well, longer-term survivors of breast cancer

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Abstract

Nine focus groups for well, longer-term survivors of breast cancer were held in Ontario, Canada. Prevalent themes identified through analysis of focus group transcripts fell into two broad categories, one reflecting the context within which women seek information and the other reflecting the content of information desired and sought. Themes related to context included: the ongoing impact on women of their initial disease experience and continued uncertainty about possible recurrence; womens' lack of information and understanding about processes involved in developing medical knowledge; prevailing mistrust about the impact of cost curtailment policies; and, concerns related to how professional communication can aid or hinder the goal of obtaining information. Themes related to content issues included: follow-up protocols, tamoxifen, detecting signs of possible recurrence, prevention for daughters, neglected side effects of treatment, insurance, lifestyle, and unconventional therapies.

Introduction

A need for information has frequently been cited by cancer patients and their families 1, 2, 3, and patients in every age group report wanting maximum amounts of information [4]. In this paper, the informational needs of well, longer-term survivors of breast cancer will be highlighted. The importance of providing information to cancer patients extends beyond satisfying a perceived need. Patients with cancer who receive information experience significant benefits, including increased participation in treatment decision-making [5], better preparation for medical procedures [5], increased satisfaction with treatment choices and interactions with health professionals 6, 7, increased control and coping with the stress of diagnosis [8], decreased levels of anxiety, mood disturbance and affective distress [9], increased ability to cope during and after treatment [10], and assistance in communicating illness-related information to their families [11].

There has been some controversy about whether information is universally useful. Study of coping styles [12]has shown that a proportion of patients prefer to limit their access to information. For example, in one recent study 10% of cancer patients reported wanting only limited information [13]. But the point to be made is that information needs to be limited, or tailored, not omitted. Even when individuals may wish to reduce anxiety by minimizing the amount of information they receive, they nevertheless need some information to assist in making decisions or preparing for procedures. In another recent study, most of those who noted at least one disadvantage to receiving information were, nevertheless, quick to point out that they still wanted to receive the information [5]. Information is typically perceived as important, even by those who adopt a passive role in relation to treatment decision-making [14].

Some types of information have tended to be more valued by patients than other types. Unfortunately, most of the research related to information preference has sampled newly diagnosed patients only, or used the point of diagnosis as a reference point for study participants to retrospectively identify their information needs. Likelihood of cure, stage of disease, and types of treatment available were identified as the three most preferred categories in a series of studies with newly diagnosed patients across cancer sites 4, 15, 16. Similarly, a survey conducted as background for Canada's National Forum on Breast Cancer reported that the information most important to women at the time of their diagnosis was that related to medical condition, to treatment choices available, and to possible effects of both the disease and associated treatments [17]. Although disease and treatment related information may be of greatest importance to newly diagnosed women, it is important to note that virtually all types of practical and psychosocial information are also typically rated as valuable [17].

Satisfaction with information received, where it has been assessed, has typically been greatest for the most valued medical domains. In the series of Canadian needs studies for four provinces, the greatest unmet needs for information were in the area of emotional issues, including, reactions to cancer and its treatment, impact on personal and social relations, lifestyle and body image changes, and the emotional needs of family members [3].

Cancer patients may seek information from a variety of sources, and may prefer some sources over others. Typical of findings in this regard, Bilodeau and Degner [18]reported the following preferred sources for newly diagnosed breast cancer patients in order of importance: physicians, nurses, friends or relatives, brochures, medical journals or textbooks, videotapes, television or radio programs, womens' journals, and newspapers. Interestingly, there are preliminary indications that the well documented reliance on physicians as the primary, preferred source of information may not extend beyond the diagnosis and active treatment phases. In a follow-up study of women approximately two years post-diagnosis for breast cancer, it was found that most information was gleaned from the media and that the hospital breast specialist team played a much lesser role than it had earlier on [19]. In another study, nurses were found to become much more important sources of information after cancer treatment ended, and physicians became less important than they had previously been [5]. Although there are various interpretations of these preliminary findings, one possibility is that they reflect shifts in the specific context of information that patients desire over time.

There has been little study of the information needs of cancer survivors as they move beyond the period of active treatment. Studies specific to longer-term survivorship have tended to focus on lingering consequences of diagnosis and treatment. The overall picture from available studies is one of most women doing fairly well across physical, psychological, social and functional domains five years or more after diagnosis 20, 21. Specific areas that have been reported to be more problematic than others include: spiritual/philosophical meaning [22], psychological well-being—especially distress related to recall of diagnosis and treatment as well as to fear of recurrence 23, 24, 25, sexuality 24, 25, lack of adequate emotional support [22], and surgery-related physical effects [25]. In addition to these areas of heightened difficulty overall, a minority of women continue to be substantially troubled by a range of issues related to breast cancer years after successful treatment [20].

The focus of the study reported on in this paper is less on trying to identify `problems', or clinically important levels of dysfunction, and more on identifying the information needs and preferences of well breast cancer survivors, four years or more post-diagnosis. This focus on information takes the emphasis away from considerations of whether womens' distress levels justify professional interventions, and places it more in a context of proactive health promotion—where information is understood as a helpful educational tool for maintaining and enhancing psychological and physical health.

Before proceeding further, it may be helpful to say a bit about the health system context for the breast cancer survivors we interviewed in Ontario, Canada. Cancer treatment is provided within a centrally funded system at no cost to patients. All of the women in this study had surgery, with a mix of lumpectomies and mastectomies. Those receiving lumpectomies would have travelled to one of eight regional cancer centres for radiation treatment. A minority of the women would have been treated with chemotherapy, which they received either at a cancer treatment centre or a local community hospital. Women attending a cancer treatment centre would have had access to nurses, dietitians and, in some cases, additional supportive care professionals. There are numerous information resources available to Ontario women, including a national toll-free cancer information line, breast cancer support group libraries, and, more recently, a provincial breast cancer resource centre, with a telephone information line.

Section snippets

Participants

Nine focus groups were held for well, `longer-term' survivors of breast cancer, defined as at least four years disease free. This definition was based on discussions with medical colleagues at the Toronto-Sunnybrook Regional Cancer Centre. A total of 70 women participated, with group size ranging from 5 to 13. Groups were conducted across Ontario and in both rural and urban settings (Peterborough, Scarborough, Toronto, Windsor, Sudbury, Manitoulin Island, Kenora, Ottawa and Burlington). The

Results

The prevalent themes identified in this study fall into two broad categories, one reflecting the context within which women seek information and the other focused on the content of information that is desired and sought. Themes related to context include: the ongoing impact on women of their initial disease experience and continued uncertainty about possible recurrence; womens' lack of information and understanding of processes involved in developing medical knowledge; prevailing mistrust about

Discussion

Study limitations: It is necessary to acknowledge the limitations of this study. The sample may not have been representative of the larger group of well, long-term survivors of breast cancer, as women willing to participate in focus groups are likely more proactively interested in information. Additionally, recruitment strategies resulted in a relatively high level of participation from the select group of women who have involvement in self-help groups. For these reasons, we must be tentative

Summary

Well, long-term survivors of breast cancer continue to feel affected by their illness experience and are looking to the health care system to provide them with adequate, coherent follow-up care, and information that will help to ease anxiety related to possible recurrence and allow them to best deal with ongoing consequences of illness and treatment. Health care teams would likely better serve the needs of breast cancer survivors if they assisted womens' transitions to follow-up care through a

Acknowledgements

This research was supported through funding provided by the Ontario Breast Cancer Information Exchange Project, a Health Canada initiative, with an additional contribution from the Ontario Breast Health Promotion Network. The authors wish to acknowledge the valuable assistance of Catherine Black, Valerie Hepburn, Natalie Parry, Chris Sinding and Dr. Debra Bakker.

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