The Breast 24 (2015) 242e247
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Original article
A qualitative study of women's experiences of healthcare, treatment and support for metastatic breast cancer Sophie Lewis a, *, Jasmine Yee b, Sharon Kilbreath c, Karen Willis d a
Faculty of Health Sciences, University of Sydney, Australia Breast Cancer Research Group, Faculty of Health Sciences, University of Sydney, Australia c Discipline of Physiotherapy, Faculty of Health Sciences, University of Sydney, Australia d Faculty of Health Sciences, Australian Catholic University, Postal Address: Locked Bag 4115, Fitzroy, Vic, 3065, Australia b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 19 October 2014 Accepted 13 February 2015 Available online 7 March 2015
Objective: The purpose of this qualitative research was to identify the healthcare, information and support needs of women living with metastatic breast cancer. Materials and methods: Semi-structured qualitative interviews were conducted with 18 women. Women were asked about their experiences of living with metastatic breast cancer and their information and support needs. Results: Women valued relationships with their healthcare professionals, particularly their oncologists. They wanted more attention paid to side-effects of ongoing treatments, which had a negative impact on their health. While oncologists were a primary source of information, women also drew on other sources. There were mixed findings about the value of support groups, with women preferring to seek alternative sources of social support. Conclusion: A diagnosis of metastatic breast cancer brings heightened reliance on healthcare professionals to respond to women's needs in a way that is different to that required with a diagnosis of early breast cancer. © 2015 Elsevier Ltd. All rights reserved.
Keywords: Breast cancer Metastatic Healthcare Social support Qualitative research
Introduction Metastatic breast cancer (MBC), also referred to as advanced or stage IV, occurs when breast cancer cells spread beyond the lymph nodes of the axilla to distant sites [1]. While incurable, treatment advances have resulted in an increasingly long period of time between diagnosis and end of life [2,3]. Despite this we have limited knowledge about women's experiences of living with MBC. To date, most research has comprised intervention studies examining treatment efficacy [4e6] or studies showing the negative health consequences of a diagnosis of MBC [7]. Women with MBC are vulnerable to physical and psychosocial health issues, associated with ongoing treatment and symptoms and the uncertainty of living in ‘contracted time’ [8,9]. Although social support is important in improving psychosocial wellbeing [7,10], it decreases
* Corresponding author. Postal Address: University of Sydney, P.O. Box 170, Lidcombe, NSW, 1825, Australia. Tel: þ61 2 90367432; fax: þ61 2 90367367. E-mail addresses: [email protected] (S. Lewis), jasmine.yee@sydney. edu.au (J. Yee), [email protected] (S. Kilbreath), karen.willis@acu. edu.au (K. Willis). http://dx.doi.org/10.1016/j.breast.2015.02.025 0960-9776/© 2015 Elsevier Ltd. All rights reserved.
over time, and women may feel isolated [9,11e13]. Vilhauer [12] found women with metastases may not receive adequate support from their partners, other family members and friends. They perceive other people as being uncomfortable, fearful or disinterested in talking about their experiences and concerns. As a result they may seek out support from other sources, particularly other women with MBC, because of their shared experiences [7,11]. The relationship between patients and healthcare providers has changed over time with patients now taking a more active role in their own healthcare, and the healthcare resources they choose to access [14,15]. While they depend on information and follow up care from their treating clinicians [16], they also draw on other information sources such as social networks or online sources [17]. At the same time women with metastases need to trust their healthcare providers because of vulnerabilities of living with a chronic, incurable condition [18,19] and the need for ongoing medical intervention. Quantitative research examining experiences with their healthcare providers, has found that women with recurrent MBC feel less supported and more dissatisfied with medical care and information after being diagnosed with a recurrence than when they were diagnosed with early breast
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cancer [20]. This may be because healthcare providers feel illequipped to provide care for women with MBC. Butow et al. [14] suggest there could be a disconnect between the information provided by clinicians and the information that patients want, with clinicians relying on statistics and patients wanting advice about the impacts of symptoms and treatments on daily living. For example, women have indicated a need for greater coordination of care and communication between healthcare team members, along with more information and support for psychological health issues [16]. Materials and method A qualitative approach was used to explore women's experiences of living with MBC, the healthcare and treatment they receive, and their information and support needs. Women were recruited from a cross-sectional research project which investigated physical activity and physical fitness levels in women with MBC. All women participated in an exit interview at the conclusion of the study to talk about their experiences of the program within one week after completing the physical activity component of the study. Following the exit interview questions, women were asked if they would be happy to answer some additional questions about their health, and all women agreed to this. Ethical approval was granted by a Local Health District Human Research Ethics Committee. Semi-structured telephone or face-to-face interviews were conducted by an experienced qualitative researcher (see list of questions in Table 1). Prompts were used to elicit indepth information about women's experiences. The interviews allowed participants to talk about aspects of their experience that were important to them and for both participants and interviewer to introduce new topics. Interviews were audio-recorded, and transcribed in full. A thematic analysis was conducted to identify the key ideas within the data [21]. Transcripts were read closely and codes developed for the ideas expressed throughout. Codes were compared across and within transcripts and broader categories developed, before deriving broader themes that encapsulated women's perceptions of their experience of living with MBC. Results Eighteen women, aged 42e78 years old, participated in the study. Twelve were married with children, three were married without children, two women were separated or divorced with children and one was single with no children. Two women identified as Asian, one as Middle Eastern, one as South American and one as Pacific Islander. Women had been diagnosed with MBC between one and 11 years prior to the study. Fifteen women had been diagnosed with a recurrence of breast cancer (one to six years prior) following an initial diagnosis of early breast cancer. Three women were diagnosed with MBC as their primary diagnosis (in 2001, 2009 and 2012). Table 2 provides demographic information about participants.
Table 1 Interview questions. The following questions were asked, with prompts to elicit further information as needed: 1. Can you tell me, how you are feeling? 2. Can you tell me about your diagnosis and treatment of breast cancer? 3. What strategies do you use to stay as healthy as possible? 4. What advice would you give a friend who was in a similar situation to you? 5. Have you participated in any support groups for women with breast cancer?
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The main themes identified about participants' perspectives on support, information and healthcare were (1) the paradox of care, (2) communication and information needs, and (3) the good and bad of social support groups. Theme one: the paradox of care The paradoxical nature of women's experience can be seen in the sub-themes (see Table 3): the side-effects of treatment; expressions of hope and trust; and the use of complementary and alternative therapies. While on the one hand, women acknowledged the need, and continued to hope, for life-saving interventions, on the other, their quality of life was impacted by the side-effects of their cancer treatment. Side-effects such as pain, fatigue, lack of energy, muscle weakness, nausea, infections and lymphoedema had the greatest negative impacts on women's health and placed limitations on their level of functioning and participation in daily life. While women were very positive about their medical care and support and reported being confident in their healthcare providers' ability to manage their disease, many were dissatisfied or frustrated with the support that their healthcare providers gave to alleviate sideeffects of treatment. Some said they were not told about the potential side-effects of particular treatments and perceived that oncologists expected their patients to “put up with” side-effects even when they were having a serious impact on their quality of life. There may be differences between what clinicians and patients perceive is most important in caring for women with MBC, with healthcare providers focusing on survival and women focusing on living with good overall quality of life. Importantly, for women who had experienced a recurrence of cancer, their perspective was also shaped by the differences between their experience of primary cancer and their recurrence. The following quote illustrates this difference; as well as the perceived difference between women and their healthcare providers: “I guess when you get diagnosed the second time, [it] is a different type of thing, but they [healthcare professionals] probably don't see it that way, they just say well here's the next lot of treatment I guess.” (Donna). This paradoxical relationship between treatment needs and wellbeing was illustrated in the continued hope women had about the capacity of treatment to keep them alive (and healthy) for a long time. Hope was sustained by the development and advancement of new treatments for metastases. Most women discussed having high trust in their healthcare professionals, and this played a vital role in their experiences of MBC and of undergoing cancer treatment. Women discussed having complete trust in their oncologist's ability to manage their cancer, including that oncologists would find alternatives when treatment became ineffective. This trust was important in sustaining their hopeful outlook. Women were unlikely to use complementary or alternative therapies (CAM) to manage cancer symptoms. Only four women currently used CAM to manage symptoms or side-effects. This may be another sign of women's high trust in conventional medicine but also an indication of low trust in CAM. Two women, who had used CAM after their diagnosis with early breast cancer, chose not to after their secondary diagnosis, stating either that treating oncologists did not encourage it because of concerns that CAM use may have been a contributing factor in their recurrence. Theme two: information and communication needs Healthcare professionals emerged as integral to women's support and information needs. Healthcare professionals, particularly clinicians, were described as the most dependable source of information, with four women relying exclusively on their oncologist for
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Table 2 Participant characteristics. Name
Age
Marital status
Ethnicity
Early diagnosis
Secondary diagnosis
Location of metastases
Work
Shey Barbara Mali Shirley Susan Sarina Margaret Michelle Carmen Jenny Rebecca Elizabeth Anne Maria Christine Pam Carolyn Donna
47 53 47 74 43 52 59 69 56 42 53 42 66 63 47 78 79 47
Married with children Married with children Married with children Married with children Married with children Married with children Married, no children Married with children Married with children Married, no children Single, no children Married with children Married, no children Married with children Divorced with children Separated with children Married with children Married with children
Asian Caucasian Asian Caucasian Caucasian Middle Eastern Caucasian Caucasian Caucasian Caucasian Caucasian Pacific Islander Caucasian South American Caucasian Caucasian Caucasian Caucasian
2002 2007 2008 2000 2007 2008 2003 2006 Missed 2003 2011 2006 Missed 2007 Missed 2005 2006 2008
2008 2008 2012 2011 2011 2012 2012 2012 2009 2011 2012 2011 2001 2010 2012 2012 2012 2012
Bone and Viscera Viscera Bone Bone Bone and Viscera Bone Bone Bone and Viscera Viscera Bone Bone and Bone Viscera Viscera Bone and
Not working Full time Full time Retired Casual Not working Not working Volunteer work Not working Retired Not working Not working Retired Part time Not working Not working Not working Full time
information. However, while generally positive, women identified unmet information needs, issues in expert to patient communication, and communication difficulties with their healthcare professionals (see Table 4). Some women discussed how they used the Internet to check whether their symptoms were normal and about ways to manage side-effects. However, this was not necessarily the way that women wanted to access information. Women who did not want to be reminded of the negativity of metastatic disease were sometimes fearful about accessing information about MBC online because they wished to avoid negative messages. Women preferred information from healthcare professionals, breast cancer advocacy and support networks, and other health organisations. Although positive interactions with oncologists that took account of women's own knowledge and concerns were highly valued, some women discussed having communication difficulties with their oncologists. While not widespread, one participant described the lack of opportunity to ask questions (and added that her choice of oncologist was limited as she lived in a rural area). More common were descriptions about being “talked about” with other health professionals as though they weren't there or couldn't understand; and the use of medical terms that excluded them from the conversation. One woman also described collecting authoritative evidence about her condition that was not well received by her oncologist leaving her feeling that her opinions and knowledge were not valued. Medical terminology and language used to describe MBC appeared to be disconnected from some women's own experience of living with this disease. This was evident in women's own conceptualisations, and rejection, of some of the ways their illness was described medically: as “secondary” or “stage IV”. Instead, these women described their cancer as “bad” or “rogue cells” “spots” or “poison” that their bodies were fighting. Women's own descriptors of their illness matched better with how they were feeling, made them feel less fearful, and gave them a feeling of hopefulness. Theme three: the good and bad of social support groups Women expressed diverse views about breast cancer support groups. Although there was general recognition of the importance of social support, only three women stated that talking to other women who shared their experiences provided the support that they themselves needed. Others indicated that they chose not to participate in a support group because they felt marginalised due to
viscera
viscera
viscera
viscera
viscera
their experiences or because they drew on their existing informal support networks (See Table 5). However, all identified a need for more access to groups specifically for women living with MBC. Reluctance to participate in a support group occurred for several reasons. These reasons included that their sense of independence was compromised; they felt well-supported by friends and family members; or they felt hopeless about their ability to improve their situation. Importantly, women did not feel that support groups met their needs. Some women did not want to be reminded constantly of the negativity of living with an incurable condition and discussing negative experiences such as sickness, hospitalisation and death. One woman described her experience of participating in a support group as “suffocating” because discussions centred on symptoms, rather than strategies for managing with cancer. Younger women did not identify with the general experiences of women with MBC who attend support groups. Others described themselves as “strong” or healthy enough to cope with their illness without this kind of support, but did believe that support groups were needed to help other women with MBC, particularly those more socially isolated, with less quality of life, or in more pain. The small number of women actively involved in a support group said that these groups provided unique support because other women with MBC could personally identify with their experiences and concerns, and for some women, even though it was difficult when other members of the group died, the benefits of solidarity outweighed the negativity. All women identified a need for support groups designed specifically for women with MBC. Women talked extensively about the lack of support for women with MBC because the majority of groups were designed for women with early breast cancer, and they felt there was no space within these groups for women with MBC. Women with early breast cancer have different experiences and support needs than women with MBC, and while early breast cancer support groups focused on discussions around ‘survivorship’, these discussions had very little value for women with MBC. Others commented that women had to actively seek out support, rather than it being offered at the time they were first diagnosed with MBC. Discussion This study highlights the pivotal role of healthcare professionals in meeting the information and support needs of women with metastases. A diagnosis of MBC brings heightened uncertainty and
S. Lewis et al. / The Breast 24 (2015) 242e247 Table 3 The paradox of care. The side-effects of treatment The doctors are great, they like to give you, there's lots of drugs and they've got the expertise, but there seems to be a bit of a gap whereby, the whole side-effects of all the treatment, they don't seem to be zeroing in on as much as they should and they don't seem to be interested in managing them. So there's a great gap there for many, because if you're going to keep treating these as chronic diseases, these people are going to have these chronic side-effects from all the treatment. And that's what interferes with your lifestyle. (Margaret) I wasn't in menopause at all before I got this cancer and once I had all the treatment it was just horrendous. I was sweating all day long and all night, I was sweating at work … I couldn't take anything for it. (Barbara) But, the tiredness is one of the dreadful things. Its lack of sleep, it is lack of sleep that is why I'm so tired. (Mali) The only problem I had was getting through radiation. Started off fine, and they said ‘you're having no reaction to this. This is wonderful’. And all of a sudden, I had the worst radiation burns. (Michelle) You know the medication … that's been my biggest hurdle the last two weeks. Not being able to do anything much at all … they keep changing the levels of that on me, it just knocks you about. (Carmen) OK, the certain drug I'm on [you get what's] called hand and foot syndrome … it's horrible, you get very red hands and feet and you get blisters on your feet and they can be quite painful, but at the moment, my doctor, she's lowered the doses and its stable, so I can manage with that at the moment. (Jenny) I'm definitely chemobrain! (Both laugh) … and it's horrible. I just stand there sometimes and I look at my husband and I think, ‘oh my gosh, I can't even get out what I'm trying to say’. It's just blank. (Jenny) With after effects, you can get very tired, with radiotherapy … it becomes an accumulative thing and you suddenly feel awful, you feel nauseous. (Anne) I really get frustrated with that, but you know, its acceptance of limitations and the disease. It's not the disease, it's the treatment that, you know. (Maria) Expressions of hope and trust [My oncologist's] just lost her very first patient that she treated with secondary … and she lasted 18 years. So she said, ‘you've got heaps of time’. (Carmen) This is the treatment that I'm on, it's been working for the last three months so, it should work but I don't start thinking what if it doesn't and you know what if this happens and that happens and what will I do then. ‘Cause I just feel that I can't do anything. When it gets to the next three months and the results are not positive, the oncologist will have a plan for me. We've already discussed that. (Donna) If they're trialing a certain drug I go and ask the oncologist about that drug. (Christine) I've lasted two years … I feel that I'm doing everything, I'm seeing my oncologist and I'm on … Arimidex, which is still working. And so I feel I'm doing as much as I can and I'm doing all the things I know how to keep myself as healthy as possible … People are pessimistic and I'm not going to go down that road. I'm not; I'm not a pessimistic person. And I would preach optimism and the fact again that it's not all gloom and doom. (Carolyn) So this last scan showed that they're gone altogether which is good, and the bone metastases has shrunk as well, there's no new sites. And all the areas that had been attacked by the chemo have all, the bones all sort of filled back in after it, so there was nothing negative. And the word [my oncologist] used was actually fantastic when they read the report, which is unusual (laughs) … It's not often you hear that word so that's good, it's very pleasing. It just means that all the work you've done, like those nine months of chemo, which you hate, at least you know that it's, it's done something. And it's been worth it. (Donna) We're going to have another scan in three months' time. I'm on the medication, if that's holding it, we'll leave it there, but if not, the only option is surgery … but we've just got to speak to [oncologist's name] first and see what he thinks is a good idea … I'm going to have another ultrasound to see if it's grown anymore. (Michelle) Use of complementary and alternative therapies I've never read or seen anyone that's gone the alternative way and survived; that's my opinion … Okay it might work for some but I've never met anyone or read anything that that's worked for. (Pam) I'm a bit hesitant doing any alternative therapies. Because I'm a bit scared of what might, what can happen. Yeah. I was taking multivitamins and calcium and everything before my secondaries, but I've stopped all that now. (Elizabeth) I haven't really thought about it. I just, I think I just think to myself. I, I have faith in the medical profession and what they're; we're doing, what they're doing. (Donna) [Doctors] put a lot of emphasis on the medicine and of course you need to take all the medication but they really just dismiss anything else … because every time I wanted to discuss it, it's more to humour me … so for example I take vitamin D and omega 3 because it helps with inflammation and keeping your immune system strong and I also take Celebrex because that stops inflammation … [The oncologist] said well it's not going to make any difference but it's not going to hurt you. (Christine)
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Table 3 (continued ) I've been seeing a naturopath from the very beginning … I can go to see her and say ‘I'm having a lot of problems with my gut’ and she'll give me something and the pain in my gut settles down and you know, whereas I say something to the GP … or the oncologists and they're just, virtually, ‘well you just have to put up with it’. And they've never been able to … They'll take down what I'm telling them, they won't give me anything to relieve the pain. (Anne)
reliance on healthcare professionals to understand and respond to their needs in a way that is different to that required with a diagnosis of early breast cancer. Women exhibited a high level of trust in their healthcare professionals' ability to manage their cancer treatment but, consistent with previous research [16], felt
Table 4 Information and communication needs. Satisfaction with information from clinicians My oncologist is just fantastic. All the information she's provided for me through this journey has been great. (Jenny) I just kind of go there and say ‘okay you give me the information’. … usually the oncologist, like for this medication she would have just said look this is what it does and this is why we're giving it to you and some of the possible side-effects. (Donna) I ended up going to see the oncologist at [name of hospital], and he was just so different, he gave me all the information and he kept saying but you already know this. So, that experience was much more positive. (Christine) Unmet information needs I'm a nurse, I've got a fair bit of knowledge, but it must be very hard for women out there just sort or being sent home and floundering around. (Margaret) I go online and I read about women who have been taking the drugs and when they talk about the side-effects, it actually does make you feel a bit better. You think, god, I'm not the only one with dreadful diarrhoea. (Margaret) I'll always go to the Internet when I'm given medication to look at the medication, and maybe what it's used for and some side-effects… just to get the facts about… what the medication is, and that's it. (Donna) [I'd like more] information for women because it's not provided. I mean I did all the research myself… maybe it's something that can be provided you know as part of a service at the cancer centres or hospitals or through oncologists or even to have a place to go because again I've tried to do some research but there is no place to go so you really have to go on the Internet. (Christine) Lymphoedema's a big issue for me and at the moment I feel like I've got lots of swelling in my arms. And I find that there's not a lot of information out about where you can go to get help with that. Like [to the see] a lymphoedema specialist … is $150 [each time]. That's not something I can afford to do… so it'd be nice to have probably a bit more information about that, or someone just to call to say ‘what can I do?’ rather than having to spend money all the time to go and see a specialist. (Donna). Expert to patient communication [My oncologist is] very regimental, ‘we'll do this, don't ask those questions, hubby can't speak (both laugh)… If there's anything you want to ask that's different to what she's just said, you ask it, but you can't go in their first up and ask. You just sit down there and just be quiet (both laugh). Then she goes through all the paperwork and plans your treatment and tells you what needs to be done… (Carmen) [My oncologist] thinks that I don't know anything. I didn't at the start but I do know now. I know the types of cancer and the different hormones… and I know the different drugs. I'm interested and I want to know what drugs I'm on… I feel I've got to do everything I can to keep myself healthy and I only have to look after myself whereas you know doctors have hundreds of patients so they can never be as targeted as I can be for myself. (Christine) They don't realise that we hear what they're talking about, and we listen, and we understand. (Carmen) Communication difficulties I didn't get the results… they would forward onto him, to the GP. And I didn't get any of that communication from the radiography place, or the GP or the specialist until I was diagnosed with the secondary. I had gone to another doctor and he said ‘you go back and you demand your results.’ (Carmen) The nurses there and the specialist, she's great and everything, but it's just [the] lack of communication. I just get frustrated… I don't know if they're just vague or don't care. (Elizabeth) I suppose some days when it's been really bad, it would have been nice to maybe talk to a nurse practitioner that knows a lot about the side-effects of drugs and things. (Margaret)
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Table 5 The good and bad of social support groups. Opportunities for solidarity and shared experiences I belong to this wonderful group that unfortunately I don't go to as much as I should… It is a good group and I would recommend it to other people. I find it helps me more to be with people that understand the cancer… (Maria) I mean there's a lot of help out there, so you can just, you can always locate something and I am a member of a couple of different support groups… I think there's a lot of support out there for us, it's a matter of finding it, looking for it, and putting up your hand and saying that you need it. (Susan) Marginalising women's experiences I don't go for cancer support groups or any of that, it doesn't appeal to me at all… I don't particularly look for self-help groups. I don't like the conversation. You know, talk about, it's all well intended, I'm sure, all that stuff, but I find that suffocating. (Rebecca) Every time I went, someone had already died, or been in hospital or whatever, so it just didn't seem to be, because I wanted to stay alive…I also didn't want to be talking about cancer all the time. And that's what the group seemed to be doing. It was just not that positive. (Anne) They were kind of in a different space and a lot of their concerns was more that their families wouldn't accept the fact that this was, that they would die…. I wanted a group that was actually worried about living longer and living better and so that I've never been able to find. (Christine) If you have first breast cancer, initial cancer, there's a lot of support for that group but mine, it was very, very tricky… in my age group. (Christine) I was the only one there with a secondary. Nobody knew what to say to me. They don't want to know about it, because that's down the track for them. And they don't want to dwell on it. (Carmen) Informal networks of support I've got friends around me that are a great support and I sort of, don't want to be reminded that I've got it or talk about it too much or worry about it, you know. (Michelle) You really need to have somebody you can talk to that understands you, that's not going to criticise you for anything that you, that will listen to you, not tell everybody, like a confidante, it has to be a friend or a family member. (Carmen) Support, yes, and your girlfriends are quite, they're angels, and you know a couple of good close friends around. (Jenny) I'm quite lucky ‘cause I have a lot of friends that I can talk to who are really supportive and none of them has cancer… they're quite supportive anyway and quite happy to talk and quite interested because nobody wants it to happen to them. (Christine) I think one or two really close friends or family that you have that you can tell anything too, is definitely something that helps. (Donna)
the support and information women receive. Women felt more supported by healthcare professionals when they had early breast cancer than following the diagnosis of metastatic cancer. This is consistent with research that shows that women with MBC receive lower levels of healthcare and support than women with early breast cancer [27]. Aranda et al. [28] reported that women with MBC are less likely to be seen by a breast cancer nurse in hospital than women with early breast cancer. A survey of breast cancer nurses found that over half reported that they did not have the knowledge, skills or time to provide an adequate level of care to those with MBC [29]. Previous research also highlights the need for improved coordination of care [16], with more involvement from other healthcare providers such as general practitioners, nurses, psychologists, social workers, occupational therapists and other allied health professionals [14]. More sources of support are also needed, including medical and non-medical and both on and offline sources, particularly for those who feel constrained in other social settings and social relationships, to talk about their cancer experience. The main limitations of this study relate to sampling and recruitment which mean that the generalisability of study findings are limited. Women were recruited from research exploring physical activity levels in patients with MBC. Potential participants were informed of the physical activity study by their treating oncologist and asked if their details could be forwarded to the researchers. Women enrolled into this study were physically able to complete a range of fitness tasks and are therefore likely to represent a higher level of function and performance compared to the general MBC population. Selection bias may have resulted in the women engaged in the current study experiencing relatively good health. It is, however, plausible that some of the issues identified by women in this study would be magnified among women who are experiencing poorer health. Most women were recently diagnosed with MBC. As such, their experiences may not reflect all women with MBC. However, it is difficult to ascertain this due to the lack of population data about the demographics of women with MBC. Conclusion
unsupported by the providers in managing some symptoms and side-effects. Women perceived that healthcare professionals did not always recognise the seriousness and impact of side-effects on quality of life. This may reflect a broader range of outcomes that are important to women with MBC, which encompass not only longevity, but also practical and quality of life outcomes [14]. This is supported by the findings of Rodriquez et al. [22] that the goals and expectations of oncologists, which are focused on treatment and biomedical outcomes, rather than disease-related or psychosocial outcomes, are different from their patients. A paradoxical situation therefore exists between treatment needs and wellbeing. Women experience feelings of hope, optimism and confidence because they trust medical treatment and their healthcare professionals to prolong their life, alongside sideeffects that can be debilitating and compromise quality of life [23]. Qualitative research has found treatment side-effects had a more serious impact on women's physical health and appearance, than their cancer symptoms [9]. These findings (also reiterated by women in this study), have clear implications for clinical practice and healthcare policy considering that a key policy goal for management of MBC is to promote good quality of life through reducing cancer symptoms and treatment side-effects, and meet women's specific information and support needs [1,11]. Limited support and information specific to women with metastatic disease resulted in these women reporting higher levels of unmet information, communication and support needs [14,24e26]. From the comments of women in this study, there remains a gap in
The unique healthcare and social support needs of women living with MBC identified in this study provide insights about their unmet needs, which have implications for future research and clinical practice. More health information and supportive care is needed that is tailored to women with MBC, and in particular about the alleviation of treatment side-effects as well as cancer symptoms. Further research is needed into the experiences of diverse groups of women with MBC, including those of different ages, ethnic backgrounds and different levels of social support and those who have been living with metastatic cancer for longer. Future research should explore the impacts of cancer and treatment on women's quality of life, and the strategies women draw upon to improve their quality of life. Conflict of interest statement All authors declare no conflict of interest. Ethical approval Ethical approval was granted by a Local Health District Human Research Ethics Committee. Acknowledgements Thank you to all the women who participated in this study for sharing their experiences.
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Original article
A qualitative study of women's experiences of healthcare, treatment and support for metastatic breast cancer Sophie Lewis a, *, Jasmine Yee b, Sharon Kilbreath c, Karen Willis d a
Faculty of Health Sciences, University of Sydney, Australia Breast Cancer Research Group, Faculty of Health Sciences, University of Sydney, Australia c Discipline of Physiotherapy, Faculty of Health Sciences, University of Sydney, Australia d Faculty of Health Sciences, Australian Catholic University, Postal Address: Locked Bag 4115, Fitzroy, Vic, 3065, Australia b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 19 October 2014 Accepted 13 February 2015 Available online 7 March 2015
Objective: The purpose of this qualitative research was to identify the healthcare, information and support needs of women living with metastatic breast cancer. Materials and methods: Semi-structured qualitative interviews were conducted with 18 women. Women were asked about their experiences of living with metastatic breast cancer and their information and support needs. Results: Women valued relationships with their healthcare professionals, particularly their oncologists. They wanted more attention paid to side-effects of ongoing treatments, which had a negative impact on their health. While oncologists were a primary source of information, women also drew on other sources. There were mixed findings about the value of support groups, with women preferring to seek alternative sources of social support. Conclusion: A diagnosis of metastatic breast cancer brings heightened reliance on healthcare professionals to respond to women's needs in a way that is different to that required with a diagnosis of early breast cancer. © 2015 Elsevier Ltd. All rights reserved.
Keywords: Breast cancer Metastatic Healthcare Social support Qualitative research
Introduction Metastatic breast cancer (MBC), also referred to as advanced or stage IV, occurs when breast cancer cells spread beyond the lymph nodes of the axilla to distant sites [1]. While incurable, treatment advances have resulted in an increasingly long period of time between diagnosis and end of life [2,3]. Despite this we have limited knowledge about women's experiences of living with MBC. To date, most research has comprised intervention studies examining treatment efficacy [4e6] or studies showing the negative health consequences of a diagnosis of MBC [7]. Women with MBC are vulnerable to physical and psychosocial health issues, associated with ongoing treatment and symptoms and the uncertainty of living in ‘contracted time’ [8,9]. Although social support is important in improving psychosocial wellbeing [7,10], it decreases
* Corresponding author. Postal Address: University of Sydney, P.O. Box 170, Lidcombe, NSW, 1825, Australia. Tel: þ61 2 90367432; fax: þ61 2 90367367. E-mail addresses: [email protected] (S. Lewis), jasmine.yee@sydney. edu.au (J. Yee), [email protected] (S. Kilbreath), karen.willis@acu. edu.au (K. Willis). http://dx.doi.org/10.1016/j.breast.2015.02.025 0960-9776/© 2015 Elsevier Ltd. All rights reserved.
over time, and women may feel isolated [9,11e13]. Vilhauer [12] found women with metastases may not receive adequate support from their partners, other family members and friends. They perceive other people as being uncomfortable, fearful or disinterested in talking about their experiences and concerns. As a result they may seek out support from other sources, particularly other women with MBC, because of their shared experiences [7,11]. The relationship between patients and healthcare providers has changed over time with patients now taking a more active role in their own healthcare, and the healthcare resources they choose to access [14,15]. While they depend on information and follow up care from their treating clinicians [16], they also draw on other information sources such as social networks or online sources [17]. At the same time women with metastases need to trust their healthcare providers because of vulnerabilities of living with a chronic, incurable condition [18,19] and the need for ongoing medical intervention. Quantitative research examining experiences with their healthcare providers, has found that women with recurrent MBC feel less supported and more dissatisfied with medical care and information after being diagnosed with a recurrence than when they were diagnosed with early breast
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cancer [20]. This may be because healthcare providers feel illequipped to provide care for women with MBC. Butow et al. [14] suggest there could be a disconnect between the information provided by clinicians and the information that patients want, with clinicians relying on statistics and patients wanting advice about the impacts of symptoms and treatments on daily living. For example, women have indicated a need for greater coordination of care and communication between healthcare team members, along with more information and support for psychological health issues [16]. Materials and method A qualitative approach was used to explore women's experiences of living with MBC, the healthcare and treatment they receive, and their information and support needs. Women were recruited from a cross-sectional research project which investigated physical activity and physical fitness levels in women with MBC. All women participated in an exit interview at the conclusion of the study to talk about their experiences of the program within one week after completing the physical activity component of the study. Following the exit interview questions, women were asked if they would be happy to answer some additional questions about their health, and all women agreed to this. Ethical approval was granted by a Local Health District Human Research Ethics Committee. Semi-structured telephone or face-to-face interviews were conducted by an experienced qualitative researcher (see list of questions in Table 1). Prompts were used to elicit indepth information about women's experiences. The interviews allowed participants to talk about aspects of their experience that were important to them and for both participants and interviewer to introduce new topics. Interviews were audio-recorded, and transcribed in full. A thematic analysis was conducted to identify the key ideas within the data [21]. Transcripts were read closely and codes developed for the ideas expressed throughout. Codes were compared across and within transcripts and broader categories developed, before deriving broader themes that encapsulated women's perceptions of their experience of living with MBC. Results Eighteen women, aged 42e78 years old, participated in the study. Twelve were married with children, three were married without children, two women were separated or divorced with children and one was single with no children. Two women identified as Asian, one as Middle Eastern, one as South American and one as Pacific Islander. Women had been diagnosed with MBC between one and 11 years prior to the study. Fifteen women had been diagnosed with a recurrence of breast cancer (one to six years prior) following an initial diagnosis of early breast cancer. Three women were diagnosed with MBC as their primary diagnosis (in 2001, 2009 and 2012). Table 2 provides demographic information about participants.
Table 1 Interview questions. The following questions were asked, with prompts to elicit further information as needed: 1. Can you tell me, how you are feeling? 2. Can you tell me about your diagnosis and treatment of breast cancer? 3. What strategies do you use to stay as healthy as possible? 4. What advice would you give a friend who was in a similar situation to you? 5. Have you participated in any support groups for women with breast cancer?
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The main themes identified about participants' perspectives on support, information and healthcare were (1) the paradox of care, (2) communication and information needs, and (3) the good and bad of social support groups. Theme one: the paradox of care The paradoxical nature of women's experience can be seen in the sub-themes (see Table 3): the side-effects of treatment; expressions of hope and trust; and the use of complementary and alternative therapies. While on the one hand, women acknowledged the need, and continued to hope, for life-saving interventions, on the other, their quality of life was impacted by the side-effects of their cancer treatment. Side-effects such as pain, fatigue, lack of energy, muscle weakness, nausea, infections and lymphoedema had the greatest negative impacts on women's health and placed limitations on their level of functioning and participation in daily life. While women were very positive about their medical care and support and reported being confident in their healthcare providers' ability to manage their disease, many were dissatisfied or frustrated with the support that their healthcare providers gave to alleviate sideeffects of treatment. Some said they were not told about the potential side-effects of particular treatments and perceived that oncologists expected their patients to “put up with” side-effects even when they were having a serious impact on their quality of life. There may be differences between what clinicians and patients perceive is most important in caring for women with MBC, with healthcare providers focusing on survival and women focusing on living with good overall quality of life. Importantly, for women who had experienced a recurrence of cancer, their perspective was also shaped by the differences between their experience of primary cancer and their recurrence. The following quote illustrates this difference; as well as the perceived difference between women and their healthcare providers: “I guess when you get diagnosed the second time, [it] is a different type of thing, but they [healthcare professionals] probably don't see it that way, they just say well here's the next lot of treatment I guess.” (Donna). This paradoxical relationship between treatment needs and wellbeing was illustrated in the continued hope women had about the capacity of treatment to keep them alive (and healthy) for a long time. Hope was sustained by the development and advancement of new treatments for metastases. Most women discussed having high trust in their healthcare professionals, and this played a vital role in their experiences of MBC and of undergoing cancer treatment. Women discussed having complete trust in their oncologist's ability to manage their cancer, including that oncologists would find alternatives when treatment became ineffective. This trust was important in sustaining their hopeful outlook. Women were unlikely to use complementary or alternative therapies (CAM) to manage cancer symptoms. Only four women currently used CAM to manage symptoms or side-effects. This may be another sign of women's high trust in conventional medicine but also an indication of low trust in CAM. Two women, who had used CAM after their diagnosis with early breast cancer, chose not to after their secondary diagnosis, stating either that treating oncologists did not encourage it because of concerns that CAM use may have been a contributing factor in their recurrence. Theme two: information and communication needs Healthcare professionals emerged as integral to women's support and information needs. Healthcare professionals, particularly clinicians, were described as the most dependable source of information, with four women relying exclusively on their oncologist for
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Table 2 Participant characteristics. Name
Age
Marital status
Ethnicity
Early diagnosis
Secondary diagnosis
Location of metastases
Work
Shey Barbara Mali Shirley Susan Sarina Margaret Michelle Carmen Jenny Rebecca Elizabeth Anne Maria Christine Pam Carolyn Donna
47 53 47 74 43 52 59 69 56 42 53 42 66 63 47 78 79 47
Married with children Married with children Married with children Married with children Married with children Married with children Married, no children Married with children Married with children Married, no children Single, no children Married with children Married, no children Married with children Divorced with children Separated with children Married with children Married with children
Asian Caucasian Asian Caucasian Caucasian Middle Eastern Caucasian Caucasian Caucasian Caucasian Caucasian Pacific Islander Caucasian South American Caucasian Caucasian Caucasian Caucasian
2002 2007 2008 2000 2007 2008 2003 2006 Missed 2003 2011 2006 Missed 2007 Missed 2005 2006 2008
2008 2008 2012 2011 2011 2012 2012 2012 2009 2011 2012 2011 2001 2010 2012 2012 2012 2012
Bone and Viscera Viscera Bone Bone Bone and Viscera Bone Bone Bone and Viscera Viscera Bone Bone and Bone Viscera Viscera Bone and
Not working Full time Full time Retired Casual Not working Not working Volunteer work Not working Retired Not working Not working Retired Part time Not working Not working Not working Full time
information. However, while generally positive, women identified unmet information needs, issues in expert to patient communication, and communication difficulties with their healthcare professionals (see Table 4). Some women discussed how they used the Internet to check whether their symptoms were normal and about ways to manage side-effects. However, this was not necessarily the way that women wanted to access information. Women who did not want to be reminded of the negativity of metastatic disease were sometimes fearful about accessing information about MBC online because they wished to avoid negative messages. Women preferred information from healthcare professionals, breast cancer advocacy and support networks, and other health organisations. Although positive interactions with oncologists that took account of women's own knowledge and concerns were highly valued, some women discussed having communication difficulties with their oncologists. While not widespread, one participant described the lack of opportunity to ask questions (and added that her choice of oncologist was limited as she lived in a rural area). More common were descriptions about being “talked about” with other health professionals as though they weren't there or couldn't understand; and the use of medical terms that excluded them from the conversation. One woman also described collecting authoritative evidence about her condition that was not well received by her oncologist leaving her feeling that her opinions and knowledge were not valued. Medical terminology and language used to describe MBC appeared to be disconnected from some women's own experience of living with this disease. This was evident in women's own conceptualisations, and rejection, of some of the ways their illness was described medically: as “secondary” or “stage IV”. Instead, these women described their cancer as “bad” or “rogue cells” “spots” or “poison” that their bodies were fighting. Women's own descriptors of their illness matched better with how they were feeling, made them feel less fearful, and gave them a feeling of hopefulness. Theme three: the good and bad of social support groups Women expressed diverse views about breast cancer support groups. Although there was general recognition of the importance of social support, only three women stated that talking to other women who shared their experiences provided the support that they themselves needed. Others indicated that they chose not to participate in a support group because they felt marginalised due to
viscera
viscera
viscera
viscera
viscera
their experiences or because they drew on their existing informal support networks (See Table 5). However, all identified a need for more access to groups specifically for women living with MBC. Reluctance to participate in a support group occurred for several reasons. These reasons included that their sense of independence was compromised; they felt well-supported by friends and family members; or they felt hopeless about their ability to improve their situation. Importantly, women did not feel that support groups met their needs. Some women did not want to be reminded constantly of the negativity of living with an incurable condition and discussing negative experiences such as sickness, hospitalisation and death. One woman described her experience of participating in a support group as “suffocating” because discussions centred on symptoms, rather than strategies for managing with cancer. Younger women did not identify with the general experiences of women with MBC who attend support groups. Others described themselves as “strong” or healthy enough to cope with their illness without this kind of support, but did believe that support groups were needed to help other women with MBC, particularly those more socially isolated, with less quality of life, or in more pain. The small number of women actively involved in a support group said that these groups provided unique support because other women with MBC could personally identify with their experiences and concerns, and for some women, even though it was difficult when other members of the group died, the benefits of solidarity outweighed the negativity. All women identified a need for support groups designed specifically for women with MBC. Women talked extensively about the lack of support for women with MBC because the majority of groups were designed for women with early breast cancer, and they felt there was no space within these groups for women with MBC. Women with early breast cancer have different experiences and support needs than women with MBC, and while early breast cancer support groups focused on discussions around ‘survivorship’, these discussions had very little value for women with MBC. Others commented that women had to actively seek out support, rather than it being offered at the time they were first diagnosed with MBC. Discussion This study highlights the pivotal role of healthcare professionals in meeting the information and support needs of women with metastases. A diagnosis of MBC brings heightened uncertainty and
S. Lewis et al. / The Breast 24 (2015) 242e247 Table 3 The paradox of care. The side-effects of treatment The doctors are great, they like to give you, there's lots of drugs and they've got the expertise, but there seems to be a bit of a gap whereby, the whole side-effects of all the treatment, they don't seem to be zeroing in on as much as they should and they don't seem to be interested in managing them. So there's a great gap there for many, because if you're going to keep treating these as chronic diseases, these people are going to have these chronic side-effects from all the treatment. And that's what interferes with your lifestyle. (Margaret) I wasn't in menopause at all before I got this cancer and once I had all the treatment it was just horrendous. I was sweating all day long and all night, I was sweating at work … I couldn't take anything for it. (Barbara) But, the tiredness is one of the dreadful things. Its lack of sleep, it is lack of sleep that is why I'm so tired. (Mali) The only problem I had was getting through radiation. Started off fine, and they said ‘you're having no reaction to this. This is wonderful’. And all of a sudden, I had the worst radiation burns. (Michelle) You know the medication … that's been my biggest hurdle the last two weeks. Not being able to do anything much at all … they keep changing the levels of that on me, it just knocks you about. (Carmen) OK, the certain drug I'm on [you get what's] called hand and foot syndrome … it's horrible, you get very red hands and feet and you get blisters on your feet and they can be quite painful, but at the moment, my doctor, she's lowered the doses and its stable, so I can manage with that at the moment. (Jenny) I'm definitely chemobrain! (Both laugh) … and it's horrible. I just stand there sometimes and I look at my husband and I think, ‘oh my gosh, I can't even get out what I'm trying to say’. It's just blank. (Jenny) With after effects, you can get very tired, with radiotherapy … it becomes an accumulative thing and you suddenly feel awful, you feel nauseous. (Anne) I really get frustrated with that, but you know, its acceptance of limitations and the disease. It's not the disease, it's the treatment that, you know. (Maria) Expressions of hope and trust [My oncologist's] just lost her very first patient that she treated with secondary … and she lasted 18 years. So she said, ‘you've got heaps of time’. (Carmen) This is the treatment that I'm on, it's been working for the last three months so, it should work but I don't start thinking what if it doesn't and you know what if this happens and that happens and what will I do then. ‘Cause I just feel that I can't do anything. When it gets to the next three months and the results are not positive, the oncologist will have a plan for me. We've already discussed that. (Donna) If they're trialing a certain drug I go and ask the oncologist about that drug. (Christine) I've lasted two years … I feel that I'm doing everything, I'm seeing my oncologist and I'm on … Arimidex, which is still working. And so I feel I'm doing as much as I can and I'm doing all the things I know how to keep myself as healthy as possible … People are pessimistic and I'm not going to go down that road. I'm not; I'm not a pessimistic person. And I would preach optimism and the fact again that it's not all gloom and doom. (Carolyn) So this last scan showed that they're gone altogether which is good, and the bone metastases has shrunk as well, there's no new sites. And all the areas that had been attacked by the chemo have all, the bones all sort of filled back in after it, so there was nothing negative. And the word [my oncologist] used was actually fantastic when they read the report, which is unusual (laughs) … It's not often you hear that word so that's good, it's very pleasing. It just means that all the work you've done, like those nine months of chemo, which you hate, at least you know that it's, it's done something. And it's been worth it. (Donna) We're going to have another scan in three months' time. I'm on the medication, if that's holding it, we'll leave it there, but if not, the only option is surgery … but we've just got to speak to [oncologist's name] first and see what he thinks is a good idea … I'm going to have another ultrasound to see if it's grown anymore. (Michelle) Use of complementary and alternative therapies I've never read or seen anyone that's gone the alternative way and survived; that's my opinion … Okay it might work for some but I've never met anyone or read anything that that's worked for. (Pam) I'm a bit hesitant doing any alternative therapies. Because I'm a bit scared of what might, what can happen. Yeah. I was taking multivitamins and calcium and everything before my secondaries, but I've stopped all that now. (Elizabeth) I haven't really thought about it. I just, I think I just think to myself. I, I have faith in the medical profession and what they're; we're doing, what they're doing. (Donna) [Doctors] put a lot of emphasis on the medicine and of course you need to take all the medication but they really just dismiss anything else … because every time I wanted to discuss it, it's more to humour me … so for example I take vitamin D and omega 3 because it helps with inflammation and keeping your immune system strong and I also take Celebrex because that stops inflammation … [The oncologist] said well it's not going to make any difference but it's not going to hurt you. (Christine)
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Table 3 (continued ) I've been seeing a naturopath from the very beginning … I can go to see her and say ‘I'm having a lot of problems with my gut’ and she'll give me something and the pain in my gut settles down and you know, whereas I say something to the GP … or the oncologists and they're just, virtually, ‘well you just have to put up with it’. And they've never been able to … They'll take down what I'm telling them, they won't give me anything to relieve the pain. (Anne)
reliance on healthcare professionals to understand and respond to their needs in a way that is different to that required with a diagnosis of early breast cancer. Women exhibited a high level of trust in their healthcare professionals' ability to manage their cancer treatment but, consistent with previous research [16], felt
Table 4 Information and communication needs. Satisfaction with information from clinicians My oncologist is just fantastic. All the information she's provided for me through this journey has been great. (Jenny) I just kind of go there and say ‘okay you give me the information’. … usually the oncologist, like for this medication she would have just said look this is what it does and this is why we're giving it to you and some of the possible side-effects. (Donna) I ended up going to see the oncologist at [name of hospital], and he was just so different, he gave me all the information and he kept saying but you already know this. So, that experience was much more positive. (Christine) Unmet information needs I'm a nurse, I've got a fair bit of knowledge, but it must be very hard for women out there just sort or being sent home and floundering around. (Margaret) I go online and I read about women who have been taking the drugs and when they talk about the side-effects, it actually does make you feel a bit better. You think, god, I'm not the only one with dreadful diarrhoea. (Margaret) I'll always go to the Internet when I'm given medication to look at the medication, and maybe what it's used for and some side-effects… just to get the facts about… what the medication is, and that's it. (Donna) [I'd like more] information for women because it's not provided. I mean I did all the research myself… maybe it's something that can be provided you know as part of a service at the cancer centres or hospitals or through oncologists or even to have a place to go because again I've tried to do some research but there is no place to go so you really have to go on the Internet. (Christine) Lymphoedema's a big issue for me and at the moment I feel like I've got lots of swelling in my arms. And I find that there's not a lot of information out about where you can go to get help with that. Like [to the see] a lymphoedema specialist … is $150 [each time]. That's not something I can afford to do… so it'd be nice to have probably a bit more information about that, or someone just to call to say ‘what can I do?’ rather than having to spend money all the time to go and see a specialist. (Donna). Expert to patient communication [My oncologist is] very regimental, ‘we'll do this, don't ask those questions, hubby can't speak (both laugh)… If there's anything you want to ask that's different to what she's just said, you ask it, but you can't go in their first up and ask. You just sit down there and just be quiet (both laugh). Then she goes through all the paperwork and plans your treatment and tells you what needs to be done… (Carmen) [My oncologist] thinks that I don't know anything. I didn't at the start but I do know now. I know the types of cancer and the different hormones… and I know the different drugs. I'm interested and I want to know what drugs I'm on… I feel I've got to do everything I can to keep myself healthy and I only have to look after myself whereas you know doctors have hundreds of patients so they can never be as targeted as I can be for myself. (Christine) They don't realise that we hear what they're talking about, and we listen, and we understand. (Carmen) Communication difficulties I didn't get the results… they would forward onto him, to the GP. And I didn't get any of that communication from the radiography place, or the GP or the specialist until I was diagnosed with the secondary. I had gone to another doctor and he said ‘you go back and you demand your results.’ (Carmen) The nurses there and the specialist, she's great and everything, but it's just [the] lack of communication. I just get frustrated… I don't know if they're just vague or don't care. (Elizabeth) I suppose some days when it's been really bad, it would have been nice to maybe talk to a nurse practitioner that knows a lot about the side-effects of drugs and things. (Margaret)
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Table 5 The good and bad of social support groups. Opportunities for solidarity and shared experiences I belong to this wonderful group that unfortunately I don't go to as much as I should… It is a good group and I would recommend it to other people. I find it helps me more to be with people that understand the cancer… (Maria) I mean there's a lot of help out there, so you can just, you can always locate something and I am a member of a couple of different support groups… I think there's a lot of support out there for us, it's a matter of finding it, looking for it, and putting up your hand and saying that you need it. (Susan) Marginalising women's experiences I don't go for cancer support groups or any of that, it doesn't appeal to me at all… I don't particularly look for self-help groups. I don't like the conversation. You know, talk about, it's all well intended, I'm sure, all that stuff, but I find that suffocating. (Rebecca) Every time I went, someone had already died, or been in hospital or whatever, so it just didn't seem to be, because I wanted to stay alive…I also didn't want to be talking about cancer all the time. And that's what the group seemed to be doing. It was just not that positive. (Anne) They were kind of in a different space and a lot of their concerns was more that their families wouldn't accept the fact that this was, that they would die…. I wanted a group that was actually worried about living longer and living better and so that I've never been able to find. (Christine) If you have first breast cancer, initial cancer, there's a lot of support for that group but mine, it was very, very tricky… in my age group. (Christine) I was the only one there with a secondary. Nobody knew what to say to me. They don't want to know about it, because that's down the track for them. And they don't want to dwell on it. (Carmen) Informal networks of support I've got friends around me that are a great support and I sort of, don't want to be reminded that I've got it or talk about it too much or worry about it, you know. (Michelle) You really need to have somebody you can talk to that understands you, that's not going to criticise you for anything that you, that will listen to you, not tell everybody, like a confidante, it has to be a friend or a family member. (Carmen) Support, yes, and your girlfriends are quite, they're angels, and you know a couple of good close friends around. (Jenny) I'm quite lucky ‘cause I have a lot of friends that I can talk to who are really supportive and none of them has cancer… they're quite supportive anyway and quite happy to talk and quite interested because nobody wants it to happen to them. (Christine) I think one or two really close friends or family that you have that you can tell anything too, is definitely something that helps. (Donna)
the support and information women receive. Women felt more supported by healthcare professionals when they had early breast cancer than following the diagnosis of metastatic cancer. This is consistent with research that shows that women with MBC receive lower levels of healthcare and support than women with early breast cancer [27]. Aranda et al. [28] reported that women with MBC are less likely to be seen by a breast cancer nurse in hospital than women with early breast cancer. A survey of breast cancer nurses found that over half reported that they did not have the knowledge, skills or time to provide an adequate level of care to those with MBC [29]. Previous research also highlights the need for improved coordination of care [16], with more involvement from other healthcare providers such as general practitioners, nurses, psychologists, social workers, occupational therapists and other allied health professionals [14]. More sources of support are also needed, including medical and non-medical and both on and offline sources, particularly for those who feel constrained in other social settings and social relationships, to talk about their cancer experience. The main limitations of this study relate to sampling and recruitment which mean that the generalisability of study findings are limited. Women were recruited from research exploring physical activity levels in patients with MBC. Potential participants were informed of the physical activity study by their treating oncologist and asked if their details could be forwarded to the researchers. Women enrolled into this study were physically able to complete a range of fitness tasks and are therefore likely to represent a higher level of function and performance compared to the general MBC population. Selection bias may have resulted in the women engaged in the current study experiencing relatively good health. It is, however, plausible that some of the issues identified by women in this study would be magnified among women who are experiencing poorer health. Most women were recently diagnosed with MBC. As such, their experiences may not reflect all women with MBC. However, it is difficult to ascertain this due to the lack of population data about the demographics of women with MBC. Conclusion
unsupported by the providers in managing some symptoms and side-effects. Women perceived that healthcare professionals did not always recognise the seriousness and impact of side-effects on quality of life. This may reflect a broader range of outcomes that are important to women with MBC, which encompass not only longevity, but also practical and quality of life outcomes [14]. This is supported by the findings of Rodriquez et al. [22] that the goals and expectations of oncologists, which are focused on treatment and biomedical outcomes, rather than disease-related or psychosocial outcomes, are different from their patients. A paradoxical situation therefore exists between treatment needs and wellbeing. Women experience feelings of hope, optimism and confidence because they trust medical treatment and their healthcare professionals to prolong their life, alongside sideeffects that can be debilitating and compromise quality of life [23]. Qualitative research has found treatment side-effects had a more serious impact on women's physical health and appearance, than their cancer symptoms [9]. These findings (also reiterated by women in this study), have clear implications for clinical practice and healthcare policy considering that a key policy goal for management of MBC is to promote good quality of life through reducing cancer symptoms and treatment side-effects, and meet women's specific information and support needs [1,11]. Limited support and information specific to women with metastatic disease resulted in these women reporting higher levels of unmet information, communication and support needs [14,24e26]. From the comments of women in this study, there remains a gap in
The unique healthcare and social support needs of women living with MBC identified in this study provide insights about their unmet needs, which have implications for future research and clinical practice. More health information and supportive care is needed that is tailored to women with MBC, and in particular about the alleviation of treatment side-effects as well as cancer symptoms. Further research is needed into the experiences of diverse groups of women with MBC, including those of different ages, ethnic backgrounds and different levels of social support and those who have been living with metastatic cancer for longer. Future research should explore the impacts of cancer and treatment on women's quality of life, and the strategies women draw upon to improve their quality of life. Conflict of interest statement All authors declare no conflict of interest. Ethical approval Ethical approval was granted by a Local Health District Human Research Ethics Committee. Acknowledgements Thank you to all the women who participated in this study for sharing their experiences.
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