Information needs and preferences of women as they proceed through radiotherapy for breast cancer

Abstract

Objective

While radiotherapy is commonly employed in the treatment of breast cancer, many women know little about treatment and experience treatment related anxiety. The aims of this study were to: Prioritise breast cancer patients’ radiotherapy related information needs and concerns; determine unmet information needs; ascertain which information sources patients prefer to receive; and explore whether information provision reduces anxiety and depression.

Methods

A longitudinal survey was administered at four time points: after initial consultation with radiation oncologist, after the planning appointment, within first week of treatment and after treatment completion. Data was analysed using generalised estimating equations.

Results

123 women participated. Women were most concerned about the impact treatment would have on their health in the future. Women identified high information needs prior to treatment planning and commencing treatment. Women's anxiety at baseline (mean = 6.07, SD = 3.89) did not significantly drop until after treatment commencement (mean = 5.33, SD = 4.15).

Conclusion

This study demonstrates that women's information needs and anxiety levels are high until treatment commencement.

Practice implications

In order to reduce patients’ psychological distress, information needs and concerns we recommend that a greater focus is placed on providing information to patients prior to treatment planning and prior to treatment.

Introduction

A lack of information and support prior to commencing cancer treatment causes psychological distress to both patients and their families [1], [2]. Patients who are poorly informed are likely to be dissatisfied with their care, have difficulty coping and also experience a reduced sense of well-being [3], [4]. Furthermore, a lack of information may lead to increased uncertainty, unnecessary anxiety and distress and may also have a negative impact on the patients’ treatment decisions [1]. Previous studies suggest that the provision of information may be correlated to a number of dependent variables, including: patient anxiety and depression; coping and self efficacy; and knowledge [1], [5], [6], [7].

Patient anxiety and depression following a cancer diagnosis is often high. Two studies conducted in the United Kingdom and Australia [8], [9] found that 45–46% of breast cancer patients experience borderline clinically relevant levels of anxiety [10] and 10–12% experience borderline clinically relevant levels of depression post-treatment using the hospital anxiety and depression scale (HADs). Research is required to determine how these anxiety levels change as patients’ information needs are met and they progress through radiotherapy.

Public awareness of radiotherapy and its role in cancer treatment is limited [11]. Uptake of radiotherapy may be increased if patients have a better understanding of radiotherapy and are provided with adequate information at appropriate times following their diagnosis. Previous studies have identified that the following radiotherapy related topics should be discussed with patients prior to radiotherapy: radiotherapy in general, the goals of treatment, their cancer diagnosis, treatment side-effects, when tests and physical exams would be performed and treatment alternatives [12], [13], [14], [15]. However, these studies did not examine these topics in detail or assess when information should be provided. Harrison et al. [16] expanded on these studies by surveying 125 breast cancer patients at four time points: during the first week of treatment, during the third week of treatment, at the end of treatment and one month after treatment. Participants reported that disease and treatment related information was important at all time points. Although this study investigated the timing of information during radiotherapy, it did not assess the specific radiotherapy related concerns and information needs of patients. It is likely that patients have concerns and information needs that are directly related to the experience of receiving radiotherapy as well as their cancer in general. In our earlier work we therefore developed and piloted two scales to measure patient concerns and information needs during radiotherapy [17].

Several randomised controlled trials [18], [19], [20], [21], [22] were conducted using different educational interventions (e.g. written material, videos, one-on-one meetings, group education sessions) with breast cancer patients to determine whether they can decrease patient anxiety and depression and improve patient satisfaction and knowledge. However, only two studies found they were able to reduce anxiety. The first, conducted by D’Haese et al. [23] examined whether staggered information provided at two time points (following first visit to radiotherapy and on third or fourth day of treatment) (n = 37) reduced patient anxiety, compared with provision of all information on the first visit (n = 31). Patients were provided with an information booklet and teaching sheets. Those who received staggered information received the information booklet on the first occasion and teaching sheets on the second. The state-trait anxiety inventory [24] was used to measure patients’ levels of anxiety before their treatment planning appointment, during the second week of treatment and during the last week of treatment. Patients were significantly less anxious if they were provided with staggered information rather than all information at one time point. However, this study was limited because the baseline measurement of anxiety was taken after patients had been provided with the information booklet. The second study by Thomas et al. [19] found that they were able to significantly reduce patient anxiety when they provided an educational video prior to chemotherapy and/or radiotherapy. The educational video provided a comprehensive description of therapy, an indication of the associated risks and patients’ personal accounts of treatment, side effects and management. Patients completed questionnaires (including the hospital anxiety and depression scale) after their consultation with their oncologist and three weeks after commencing their treatment. Results showed that the video significantly reduced patient anxiety (p = 0.001). Although, this was a significant result, it is unknown whether patients felt significantly less anxious prior to their treatment planning appointment or treatment commencement. Furthermore, the information provided in the video focused on general information about radiotherapy and its associated side effects and failed to provide patients with information about the procedures they were about to undergo or detailed information about what the experience is like. Additionally, the provision of the video did not facilitate providing patients with tailored information or allow patients to be involved in discussing their fears, concerns and decisions as they progressed through treatment [16], [25].

In order to tailor information for breast cancer patients we need to have an understanding of their specific information needs and preferences for different types and sources of information as they progress through radiotherapy. To date, there has been a lack of quantitative research that provides a detailed account of breast cancer patients’ information needs and preferences as they progress through their radiotherapy treatment. Our previous qualitative research provides a summary of the possible information needs that patients may have as they progress through treatment [26]. The aims of this study were to: (1) Prioritise breast cancer patients’ radiotherapy related information needs and concerns as they progress through treatment; (2) determine which information needs are currently not being met; (3) ascertain which information sources patients prefer; and (4) explore whether the provision of information reduces patient anxiety and depression over time. The following research questions were identified: (1) what concerns do patients have about radiotherapy as they progress through treatment; (2) what are patients’ highest information needs as they progress through treatment and how do these information needs change over time; (3) which information needs are currently not being met; (4) which information sources do patients prefer; and (5) how do patients’ anxiety and depression levels change as they progress through treatment.