Understanding older women’s decision making and coping in the context of breast cancer treatment

Abstract

Background

Primary endocrine therapy (PET) is a recognised alternative to surgery followed by endocrine therapy for a subset of older, frailer women with breast cancer. Choice of treatment is preference-sensitive and may require decision support. Older patients are often conceptualised as passive decision-makers. The present study used the Coping in Deliberation (CODE) framework to gain insight into decision making and coping processes in a group of older women who have faced breast cancer treatment decisions, and to inform the development of a decision support intervention (DSI).

Methods

Semi-structured interviews were carried out with older women who had been offered a choice of PET or surgery from five UK hospital clinics. Women’s information and support needs, their breast cancer diagnosis and treatment decisions were explored. A secondary analysis of these interviews was conducted using the CODE framework to examine women’s appraisals of health threat and coping throughout the deliberation process.

Results

Interviews with 35 women aged 75-98 years were analysed. Appraisals of breast cancer and treatment options were sometimes only partial, with most women forming a preference for treatment relatively quickly. However, a number of considerations which women made throughout the deliberation process were identified, including: past experiences of cancer and its treatment; scope for choice; risks, benefits and consequences of treatment; instincts about treatment choice; and healthcare professionals’ recommendations. Women also described various strategies to cope with breast cancer and their treatment decisions. These included seeking information, obtaining practical and emotional support from healthcare professionals, friends and relatives, and relying on personal faith. Based on these findings, key questions were identified that women may ask during deliberation.

Conclusions

Many older women with breast cancer may be considered involved rather than passive decision-makers, and may benefit from DSIs designed to support decision making and coping within and beyond the clinic setting.

Background

The extent to which older women with breast cancer are involved with and cope with treatment choices, and the potential need or value of decision support interventions, is not well described. Primary endocrine therapy (PET; hormonal therapy) can be just as effective as surgery followed by endocrine therapy for a subset of older women (75 years and over) with oestrogen receptor positive breast cancer and limited life expectancy. It is therefore a good alternative for this group as survival is equal for the two treatments, although local control is inferior with PET [1]. The decision as to which treatment is best for these women is preference-sensitive, highlighting the need for appropriate decision support for older women with breast cancer. The decision involves making trade-offs, for example women may have to consider pain and potential morbidity associated with surgery against potentially having a residual palpable breast lump which may serve as a reminder of their cancer if they choose PET. Having PET also involves more frequent attendance at follow-up appointments over a longer time period, and there is the risk that it may stop working after a couple of years. Should the cancer escape control with PET, a change of management is necessary. This can be surgery or alternative lines of PET. However, alternative PET options tend to be effective for shorter periods and these options are eventually exhausted. In effect, older women are being asked to gamble whether they will die of something else before the breast cancer escapes control by the PET and whether they are prepared to risk this to avoid surgery. It is therefore a complex and potentially difficult decision.

Previous studies of treatment decision making in this patient group suggest that most women do not actively ask questions of healthcare professionals, but rather look to them for guidance [2]. Older women’s main concerns related to non-medical aspects such as maintaining their independence, which they did not discuss with their healthcare professionals. Similarly, Burton and colleagues [3] found that, while older women appreciated being offered a choice of PET or surgery, many sought guidance from their healthcare professionals to recommend or approve a treatment choice. Women often chose their treatment based on past experiences and pre-existing knowledge, and usually with the goal of either removing the cancer or avoiding surgery [3]. These studies highlight the need to engage older women with breast cancer in discussions with their healthcare professionals about their treatment.

Decision support interventions (DSIs) have been shown to improve patient knowledge and involvement in decision making [4]. When developing a complex intervention, such as a DSI, a theoretical underpinning should be used to guide the content [5]. The Coping in Deliberation (CODE) framework [6] is suited to understanding treatment decision making as it includes emotions and coping as well as cognitive processes. The framework integrates cognitive and emotional appraisals of the health threat and decision (primary appraisals) and potential coping strategies which are identified (secondary appraisals) throughout the deliberation process. These concepts are based on Lazarus and Folkman’s [7] transactional theory of stress, appraisal and coping, and Leventhal’s [8] self-regulatory model of illness perceptions [6]. Deliberation is a process comprised of a number of stages throughout which information is considered, appraisals made (i.e. that there is a choice, what the options are, the pros and cons of each option), preferences formed, and finally a decision made [9]. Appraisals at each stage of the deliberation process can influence other stages (both previous and subsequent) of the deliberation process and ultimately influence the treatment decision. The CODE framework has previously been adapted to understand women’s decisions about risk reducing bilateral salpingo-oophorectomy and to form the basis of a DSI [10, 11]. Examining coping and decision making processes is particularly important when DSIs are designed for a specific age group, because the use of different coping strategies across the life span [12] may influence not only the content of the DSI, but also its use and implementation. There is evidence to suggest that older patients tend to prefer less participation in treatment decision making, previously described as a ‘passive’ approach [13]. Older people may in fact be more likely to use efficient coping strategies which conserve processing resources, as well as strategies which have been effective in the past [12]. Older people have also been shown to use positive re-appraisal and advanced coping strategies such as decentring and focusing on long-term, rather than short-term, goals [12]. Their appraisal of stress, and consequent need for coping strategies, is therefore potentially different to those of younger people [12].

The present study is part of the Bridging the Age Gap in Breast Cancer programme which aims to provide evidence-based guidance for the treatment of older women with oestrogen receptor positive breast cancer in the UK, and to minimise unwarranted variation in the management of this patient group. The analysis in the study by Burton and colleagues [3] focused on women’s informational needs and preferences for the decision between surgery and PET. The present study was a secondary analysis of the data to examine women’s cognitive and emotional representations of the treatment decision, as well as coping resources. The CODE framework was used to understand older women’s coping and decision making processes in order to guide the content of DSIs designed to engage them in breast cancer treatment decisions.

Methods

Sample

National Research Ethics approval was obtained (12/LO/1722) and Research Governance approval for each participating centre. Patients were recruited from five Breast Units, over three regions across the UK; Yorkshire and Humber (Doncaster and Sheffield), East Midlands (Derby and Leicester) and South Wales (Cardiff). Women aged 75 years and older who had been diagnosed with oestrogen receptor positive breast cancer (in the last 5 years) and had been offered a choice of PET or surgery with endocrine therapy, were invited to take part in the study (see [3] for more details).

Procedure

Following written informed consent, interviews were conducted by experienced qualitative researchers (MB and KL) predominantly in the participants’ own homes. Interviews were audio-recorded and transcribed verbatim. The interviews were designed to understand women’s treatment decision making, information needs and preferred media for information [3]. The semi-structured interview schedule (see [3] supporting information) included the following topics: breast cancer diagnosis, perceptions of treatment, treatment decision making, sources of information and preferred formats of DSIs. The schedule was not based specifically on the CODE framework; however, areas relating to elements of Leventhal’s [8] self-regulatory model of illness perceptions (one of the theoretical underpinnings of the CODE framework) were included, as well as aspects of the decision making process (e.g. which factors influenced their decision).

Analysis

The interview data generated multiple analyses. The primary analysis focused on the information needs and preferences for decision making and used an inductive approach and is reported elsewhere [3]. For the present study, a secondary analysis of the interviews was conducted by imposing a conceptual framework [6] to identify specific decision making appraisals and coping strategies. The present report therefore summarises results from an additional set of analyses from the same set of interviews. After familiarisation with the data, transcripts were coded (by JW) according to the CODE framework phases (Fig. 1, [6]). Twenty percent of the coded transcripts were reviewed (by KL and KB) and discrepancies were resolved through discussion. Reviewing 20 % of the coded transcripts was a pragmatic decision. Quotes were then charted within the relevant code(s). The data within the chart were then reviewed and used to adapt the questions in the generic CODE framework (Tables 1, 2, 3, column A-Generic CODE question) to the PET vs. surgery with endocrine therapy decision (see [11] for further details). Quotes within the tables are good examples of the issue being raised that relates to the relevant CODE question, but they are not necessarily representative of the sample in terms of their specific content. Because the analysis was secondary, data that were deemed not relevant to the decision making process and coping (such as details of the diagnosis and preferred media for information) were not included.

Fig. 1

Coping in Deliberation analysis coding framework

Table 1 Appraisals of breast cancer

Table 2 Appraisals of treatment choice

Table 3 Appraisals of treatment options and preference construction

Results

Sample characteristics

Interviews were completed with 36 women (we do not have accurate data on the number of women invited); however, one interview was excluded due to a recording failure. Thirty-five patients were therefore included, whose ages ranged from 75 to 98 years (median age 83 years). The majority of women were recruited from Yorkshire and The Humber (n = 27) with a further five from East Midlands and three from South Wales. Women were between 3 and 96 months post-diagnosis when interviewed. The majority of the data for calculating the time since diagnosis is based on women’s reports, some is based on clinician reports, and is therefore only approximate. Twenty three women had received PET (median age 85 years, range 76 to 98 years) and twelve had undergone surgery (median age 79.5 years, range 75 to 94 years).

Interview analysis

Women appraised their breast cancer and potential treatment options (primary appraisals), albeit often only partially. They also considered and employed various coping mechanisms (secondary appraisals). Many did not perceive that they had a choice to make, either because they were not offered a choice by their healthcare professional, or they felt the decision was almost instantly obvious. The majority did not describe experiencing difficulty with decision making. Most formed a preference relatively quickly based on their past experiences and personal goals and values. Women’s appraisal and coping processes are described in more detail in the following sections and references are given to the appropriate CODE framework question adaptation with example quotes (refer to Tables 1, 2 and 3). Quotes are identified by the participant’s age and type of treatment (PET or surgery).

Breast cancer

Primary appraisals: threat or relevance of breast cancer (Table 1 . A)

Women’s cognitive appraisals of breast cancer were mainly focussed on their chances of survival and the potential for cancer control or cure. They often drew on their family members’ and friends’ experiences of cancer.

“…I shut down regarding the breast cancer because I thought that was going to kill me…” _{77, PET}

Some explored the potential causes of their cancer and the impact of their diagnosis on their future plans.

Emotional appraisals of their breast cancer included shock and distress at the diagnosis for some, but also an acceptance of it, with women often remarking that getting the diagnosis later in life was not as bad as being diagnosed at a younger age.

“I didn’t feel sorry for myself, I didn’t like it but I thought well at my age you’ve got to die sometime, I’ve gone a long time you know what I mean and I feel sorry for younger ones I do.” _{82, PET}

They also considered the impact it may have on their quality of life.

Interviewer: Were you upset? “Yes you know, I mean it’s not a pleasant … I only was worrying about the pain I’m going to get in time…”_{90, PET}

Secondary appraisals: resources to cope with breast cancer (Table  1 . B)

Many women did not wish to have a detailed understanding of their breast cancer and did not seek information in addition to that provided by their breast specialists. Some women described distracting themselves from their diagnosis; blocking conversations and thoughts about breast cancer. However, one woman sought additional information and advice from relatives.

Women considered talking to relatives and friends about their breast cancer, with this providing a source of instrumental and/or emotional support (especially in terms of accompanying them to their appointments).

“Because my sister came with me, because she had breast cancer, but she had it over twenty years ago.” _{75, surgery}

Others, however, did not wish to discuss or “burden” relatives and friends. Some considered emotion-focused strategies such as positive reappraisal and their faith to cope with their breast cancer.

“I just keep praying and talking to God about it and telling him all about it and everybody keep[s] praying for me…”_{76, PET}

Treatment choice

Primary appraisals: threat or relevance of choice (Table  2 . A)

Women initially appraised whether there was a choice at all. If they perceived a choice had been offered, they explored the scope of the choice (i.e. how many options, what the options were) and timeline of the decision. Some talked about the choice between types of surgery and did not recall the offer of PET.

“…he did give me the option of what he could do, he could just take the lump out, he could remove the breast, there’s something else.” Interviewer: Hormone treatment? “I don’t remember that but I know he said if I had just the lump taken, oh and he could also rebuild it at the same time if I wished...” _{79, surgery}

Feelings about having a choice were also discussed. While some described difficulty with decision making and therefore did not want so much choice, others felt pleased that they were offered a choice and could participate in decision making.

“I think choice is, I think you like to feel that your body is your own, even (though) you’re having things done to it.” _{80, PET}

Secondary appraisals: resources to cope with choice (Table  2 . B)

Some women discussed their treatment decision with their healthcare professional and/or relatives and friends. They often allowed those individuals to help them reach a decision. Some described canvassing opinions or seeking advice from others.

“…I said to my son-in-law, ‘Honestly [son-in-law’s name], give me your opinion. Now do I really need the operation, or…?’ I didn't say I would go with what he said…”_{81 PET}

Others talked about making a decision independently from their family and friends, appraising that they were sufficiently equipped and confident to complete the task.

Some women turned to their faith to help them cope with the choice.

“I feel if you pray, if you have a faith and you pray and then to put… you leave it in God’s hands.” _{98, PET}

Treatment options and preference construction

Primary appraisals: threat or relevance of treatment options (Table  3 . A)

Some women did not appraise their treatment options in any detail, particularly those options which they rejected outright.

Appraisals that were made often included the risks and benefits of options, with a particular focus on chances of survival, side-effects and practical aspects.

“…I think it’s very important that they give you the options and … for instance, to know how long do you think the tablets can keep the cancer away … and what’s, what’s the success rate is for being operated on, as well because that’s important in your choice. _{80, PET}

Women also appraised the potential negative impact of the options on their quality of life, which included their post-operative care, ability to cope with activities of daily living and ability to continue to enjoy their hobbies.

“…I’m worried that my chief hobby is crown green bowling and about the lymph glands in my right arm…” _{79, PET}

Women tended not to be concerned about post-operative scarring and altered body image. However, some considered the impact of this and other physical changes, in particular hair thinning/loss. They often brought their age and fitness into their appraisals.

“…I’ve had friends that have had surgery ... but they were younger. I didn’t think it was worth it at my age.” _{90, PET}

While appraising their options, most drew on past experiences of cancer (in some cases many years ago).

“…what I’ve heard about it, people and friends going, I would not want to be going every day for radiotherapy somewhere. I thought this I cannot do.” _{90, PET}

When talking about surgery many reported feeling frightened and concerned about the surgical procedure and things associated with it (e.g. hospitals, doctors, anaesthetic). Also, some women specifically mentioned feelings about radiotherapy, chemotherapy and tablets.

“Radiotherapy, I’d got a dread of that…” _{75, surgery}

Primary appraisals: preference construction (Table  3 . B)

Preferences were formed mainly based on personal goals and values and/or doctor’s recommendation. Those who followed the doctor’s recommendation often chose to learn very little about the alternative option and emphasised the trust they put in their healthcare team. Of the women who played an active part in the decision, the goals of those who chose a mastectomy were to get rid of the cancer as soon and fully as possible as well as to avoid further treatment. The goals of those who chose PET were to avoid surgery (often due to their age or past experiences) and hospitalisation, as well as to preserve their current quality of life.

“…I said, ‘I don’t want to live any longer, but I do want to stay in my own house as long as I possibly can’ …what I insisted on was, trying to give me the best quality of life they could give me…” _{85, PET}

While some women preferred PET, a couple also mentioned that it left their options open should PET be unsuccessful.

“I’d say well if I had a choice I’d rather try a tablet first and then if nothing, if it wasn’t successful then I would have surgery.” _{8592, PET}

Many women formed their preferences very quickly, based on past experience and/or a gut feeling when diagnosed.

“…straight away I just said ‘take it off’ and I meant take the lot off … they gave me a choice of treatments, and I said ‘just take it off, cut it out’.” _{84, surgery}

Secondary appraisals: resources to cope with treatment options and preference construction (Table  3 . C)

While most women seemed to accept the information from healthcare professionals, some women sought additional information about the treatment options. Some also spoke to peers with first-hand experience of breast cancer and treatment.

“…[My friend who’d had surgery] said come and see her you know so we both poled over and she bared all and she said she wouldn’t have a lumpectomy because of the radiotherapy which finished her off.”_{79, PET}

Some women considered whether they were strong or healthy enough to recover from surgery and explored whether there were additional coping strategies they could employ, such as dietary supplements or relaxation techniques. Women appraised instrumental coping resources that could help them post-surgery, for example whether family and friends would be able to provide practical support. Potential sources of emotional support were family, friends and religious beliefs.

Discussion

Older women have previously been described as usually preferring a more passive role in treatment decision making [13]. However, the present study suggests that many were involved in their breast cancer treatment decision and used a number of strategies to support this process. Individual variation in degree of involvement ranged from women making the decision themselves, to making a joint decision with their specialist, to asking for or deferring to the specialist’s recommendation. The women interviewed did not appear to struggle with decision making about breast cancer treatment. Some made their decisions very quickly, some had pre-conceived ideas and others rapidly evaluated and rejected or accepted treatments offered, describing an immediate preference. Others deliberated to varying degrees, with differing levels of external support and discussion. Collaboration with healthcare professionals included receiving and seeking information, advice and discussion about the options and choice, joint decision making and help to cope with choosing.

Some women demonstrated active involvement in decision making, reporting strong feelings of knowing clearly what they wanted. In contrast, others followed the doctor’s treatment recommendation and these women often chose to learn very little about the options not recommended to them, suggesting trust in the healthcare team. However, rather than reflecting inactivity in decision making, the approach of this latter group of older women may allow them to conserve resources and use their experience to defer to the clinical expertise and knowledge of the healthcare professionals. The idea of deferring to clinical expertise is supported by Husain and colleagues [2] who reported that women sought guidance from their healthcare professionals. By including an examination of coping strategies when assessing the deliberation process, some decision making preferences previously judged as passive may be understood differently. As Aldwin [12] suggested, older adults may use more efficient coping strategies which can be very adaptive in later life. Some older women may therefore actively choose to use an effective coping strategy, such as deferring to the healthcare professional or consulting their social network, to make their decision. However, an alternative explanation may be that patient barriers, such as lack of confidence in asking questions, difficulty in understanding information and failure to understand that there is a choice [14], preclude active participation in treatment decision making.

Many made their decisions relatively quickly. Making fewer or faster appraisals is no less valid than taking a more deliberative and potentially longer, resource-intensive approach. Indeed, using limited information or rule of thumb approaches to decision making has been argued to be just as effective as more complex approaches [15–17].

Some women did not perceive that they had a choice to make because they were not offered a choice by their healthcare professional, yet the eligibility criteria included having been offered a choice of surgery or PET. There are at least three possible explanations for this. Firstly, an error may have occurred when reviewing the participant’s eligibility for the study. Secondly, the understanding of “offering a choice” might be understood differently among healthcare professionals. For example, for one it may mean that the patient was presented both options equally, asked about their preferences and the two options discussed, however for another it may mean that one treatment was recommended but an alternative was mentioned within the discussion. Thirdly, women may not recall the alternative being offered to them (and this might particularly be the case if they were not interested in the alternative) or may not have understood that they had a choice.

The CODE framework was found to be adaptable to breast cancer treatment decisions and enabled insights to be gained into older women’s decision making and coping. There were, however, limitations to the present study. This was a secondary analysis of data collected to assess older women’s information and decision support needs. The primary focus of the interviews was not on decision making and coping processes, hence full analysis of these processes was not possible. Biases may have been introduced from the limited data and interpretation by the coders. Retrospective recall bias is also possible as the eligibility criteria included diagnosis within the last five years, and some women reported a diagnosis prior to this, possibly demonstrating recall error. Finally, the treatment decisions discussed within the interviews were not always solely decisions between PET and surgery, but also included decisions between different types of surgery (with and without consideration of PET). Despite these limitations, the present findings provide a unique insight into older women’s appraisals about their breast cancer treatment decision and coping strategies, and the basis for a theoretically grounded DSI for these women.

An important implication of this study is that women should be offered decision support that recognises individual variation in decision making and coping, and supports them in achieving their preferred level of involvement. This might include raising questions such as “how much do I want to be involved in this decision?” within decision support material. Such an approach could potentially empower those who lack confidence to take up the opportunity to be involved and open up the option of seeking a recommendation from the healthcare professional for those who want it. Indeed, it might be important to recognise within a DSI that deferring to a healthcare professional’s recommendation is a valid decision making approach, and therefore effective coping strategy, if it is preceded by a discussion of the options available and of personal preferences [18]. As variation was found in decision quality in terms of lack of knowledge about the treatment options or indeed that a choice exists, a DSI which promotes shared decision making and clearly states the options may benefit women facing the choice of PET or surgery with endocrine therapy. Concise and easy to understand information relevant to the decision, such as an option grid [19] for use within the clinical setting, may help patients and healthcare professionals to engage in shared decision making. Information which is short and clear that can be used within the clinic setting may be particularly appropriate for women facing this decision who appear to make a decision relatively quickly, may not want much additional information other than what the healthcare professional provides and appreciate the discussion with healthcare professionals [3]. Longer components of a DSI may also be developed to provide an additional resource for those patients who wish to explore the information and options in more detail, enabling them to consolidate and build on their knowledge, and facilitate discussion with healthcare professionals and relatives/friends (if that is their preference). The dual approach of a concise and expanded DSI format may support fast, intuitive emotional responses as well as more deliberative, cognitive responses to information about treatment options [20].

Having adapted the CODE framework for the decision between PET and surgery with endocrine therapy, these questions can guide the content development of a DSI. For example, along with information on survival and recurrence rates, presenting the possible impact of each treatment option on quality of life may, for women facing the choice of PET or surgery with endocrine therapy, be important. Recognising the limitations of general health at a later stage in life and the effect of comorbid illnesses and medication may also need to be addressed. As past experiences were often reported by women when considering the treatment decision, highlighting that experiences might vary and that treatments may have changed over time would also be a useful addition to a DSI. Different coping strategies which have been identified through the adapted CODE framework can be encouraged and supported within a DSI. This may include suggestions to discuss the decision with others, or to seek strength or comfort in religious/spiritual beliefs.

Further research is needed to assess older women’s preferences for breast cancer treatment decision making within a larger sample. Collecting quantitative data would allow further generalisations to be made about involvement and preferences in breast cancer treatment decisions. It is also important to gain an understanding of healthcare professionals’ attitudes towards treatment decisions in order to be able to encourage shared decision making.

Conclusions

Many older women with breast cancer are involved with their breast cancer treatment decisions and may benefit from DSIs designed to support collaborative decision making and coping, within and beyond the clinic setting. Using the CODE framework, appraisals of coping and decision making about breast cancer treatment were identified and key questions which older women may ask during the deliberation process were outlined. These will be informative for the development of DSIs to support older women making breast cancer treatment decisions.