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Abstract

The main purpose of this paper is to evidence the importance of fostering research with long-term breast cancer survivors, at the same time that the concept of long-term survivorship is introduced in the Spanish nursing research context. This paper is organised into three sections that examine studies on the quality of life in survivors of breast cancer. Evidence shows that the quality of life of these women differ from that of healthy women. Therefore, it is concluded that it is important to promote research in this area of cancer nursing in Spain in order to provide good care to this growing population.  

Introduction

     One of the constants of all professional disciplines through the history is the concern for increasing scientific knowledge through quality research; for example, an important task in the field of nursing is to contribute to the scientific knowledge with the aim of improving quality in nursing care.^1,4 Therefore, research related tasks are aimed at providing truthful information to nursing professionals that work in different areas, such as assistance, research, teaching, management and administration. In a more specific way, one of the important lines of research in the Health Social Sciences refers to the quality of life in breast-cancer patients. Several studies have been carried out on this subject, specially in Anglo-Saxon countries.^5-10 The appearance of this line of research is based on the fact that having cancer is not seen as an acute terminal disease, but as a long chronic process.¹¹ This fact has implied a change of perspective in research. As a consequence, oncological research has taken a holistic approach that translates in the introduction of a broad concept defined as quality of life.
     Because of major medical and technological breakthroughs as well as the early detection of breast cancer it is important to make reference to the increasing number of long-term survivor women.^12-14 Despite the gradual interest in doing research on aspects related to the quality of life of this population,^15-21 there is not enough information on this matter. Nevertheless, one of the important aspects to improve the quality of life of these women is that nursing professionals, apart form providing good care,²² know about the needs and worries of this population.
     Before proceeding, we ought to give a definition of long-term survivor because this one is a new concept in the Spanish nursing research. According to Leigh,¹³ a long-term survivor is the "patient who has survived for five years or more after his diagnosis of after ending the treatment". In the context of this paper, a long-term breast cancer survivor is defined as a person who has lived for more than five years with no evidence of disease after having been diagnosed as having cancer and that despite not having symptoms, he may suffer from the physical, psychological, social, spiritual and sexual after-effects which are the consequence of cancer. Five years is identified as a reference point to talk about long-term survivors because cancer recurrences have been proved to be more common during the first five post-diagnosis years.²³
     The main purpose of this paper is to evidence the importance of fostering research with long-term breast cancer survivors, at the same time that the concept of long-term survivorship is introduced in the Spanish nursing research context.
     For this reason and given that after a detailed bibliographic revision carried out in Medline database (international database about social and medical sciences that covers the areas of medicine, oncology, nursing, odontology, veterinary science, public health and preclinical sciences) and Cuiden (Spanish nursing database) no article has been found in Spanish about this subject, we present information from studies published in English. Exhaustiveness has not been paramount in this paper. Its usefulness, rather than presenting information of the whole of oncological research, is to offer a precise and specific view of the stage of cancer survival, emphasizing the importance of fostering research in this area of oncologic nursing.
     This paper is organized into four sections. The first one presents some reasons why research during the survival stage is of great interest. In the second section, the specific tools most frequently used to measure the quality of life of long- term breast cancer survivors are considered. In the third section, in order to show the importance of doing research about the needs of this specific population, it is studied whether there are differences in the quality of life between long-term breast cancer survivors and healthy women. In order to carry that out, comparative studies on this subject have been revised. Finally, it is offered a synthesis of the bibliographic revision carried out and some future prospects for nursing research in Spain are suggested.

Why "quality of life" in cancer long-term survivors?

     Taken into account that most breast cancer patients may life for long periods of time,^23,24 it is essential to make an assessment of their quality of life in the long term. Holzner and his colleagues²⁵ identified two main reasons why research on this area of nursing should be promoted. Firstly, the identification of the physical and psychological after-effects after a long cancer remission period may help health professionals to know about the possible later effects that require specialized attention in the monitoring of oncological patients. Secondly, the acquisition of detailed information about the quality of life of this population could help health managers determine the services that must be preserved because of their favourable help or the services that should be developed in the future.
     It is for these reasons that an increasing number of researchers have started to study the quality of life during the cancer survival stage. For example, Holzner et al²⁵ did a transversal study in order to identify the changes of the quality of life from the beginning of the antitumoral treatments in oncological patients. For this aim, researchers divided the patients into three groups depending on the time passed since the beginning of the treatment: Group I: 1-2 years; Group II: 2-5 years; Group III: more than five years. Results showed a reduction in the quality of life, specially visible in the areas of emotional, social and sexual functioning in the groups I and III. A reduction in the quality of life due to emotional, cognitive, sexual and social patients in patients with more than five years survival was also identified apart from changes of role. The authors of this study attributed the reappearance of emotional problems to two main factors. Firstly, despite the fact that women could be free from disease, they had to face the uncertainty of suffering cancer recurrence. Secondly, maybe patients did not receive the necessary social support due to the lack of knowledge of professionals about the needs of this population. Another recent longitudinal study²⁶ presented the results of 195 breast cancer survivors that were interviewed annually during a period of four years after having finished all kind of treatments. The authors measured the quality of life of the participants and they concluded that they experienced a reduction in the quality of life that remained through the years.
     All these results suggest that the psychological impact experienced by women as a result of the diagnosis and the breast cancer treatment is not ephemeral. Long-term breast cancer survivors also experience physical, emotional and social worries some years later.^27-29 Nevertheless, it is important to point out that there are individual variations with regard to the type and degree of necessity of these woman because every person is unique. That is the reason why when health professionals, and especially nurses, assess the needs of these clients, it is important to consider the individual perception of each patient with regard to his quality of life.

Scales for the assessment of the quality of life

     Since a lot of women live more than five years after been diagnosed with breast cancer, it seems reasonable to wonder why so little attention has been paid to this population. Maybe this has been due to the fact that researchers have not had a specific instrument to assess the quality of life of this population until recently. That is why to measure the quality of life of oncological patients, they had instruments that were useful because of their easy application, such as the Karnosfsky scale or the scale by the ECOG or by the WHO.^30-32 Nevertheless, with these scales it was not possible to assess specific dimensions in cancer survivors.
     In an attempt to objectify the quality of life of the long-term cancer survivors, Ferrer et al³³ in 1995 developed an instrument known as Quality of Life-Cancer Survivors questionnaire (QoL-CS). This new conceptual model identified new measuring areas: physical, psychological, social and spiritual well-being. Nevertheless, it is important to highlight that the study by doctor Ferrell and her collaborators was only used in a group of women who showed no evidence of disease during a period between four months and 28 years. Therefore, as the possible differences between short and long-term survivors were not taken into account in this study, this scale cannot be considered to be specific for long-term survivors.
     A year later, Wyatt and Friedman²⁹ identified aspects related to the quality of life in long-term cancer survivor women and they developed a new instrument called Long-Term Quality of Life (LTQL). This instrument was designed to measure the quality of life of four different domains: the physical, the psychological, the social and the spiritual/philosophical one. The authors of this study had results of great importance. They found out that long-term survivor women noticed slight physical changes but they had important after-effects in the psychological, social and spiritual areas. It means that the reduction in the quality of life of these women was mainly due to changes in the emotional, social and spiritual/philosophical areas. On the other hand, it was pointed out that women who had suffered cancer recurrence showed a reduction in the quality of life due to physical changes. So Wyatt and Friedman²⁹ concluded that nursing interventions addressed to long-term survivors  should be aimed at meeting the social and spiritual needs, not only the physical ones, that turned out to be minimal in these patients.
     In another study in which the researchers Wyatt et al³⁴ used the same sample as Wyatt and Frieddman²⁹ to validate the scale LTQL, the authors led a factorial analysis as well as an analysis of the internal consistency of the instrument. It is important to say that until the present day, this one is the only specific instrument developed and validated to measure the quality of life of long-term cancer survivors. The results of this work proved differences between the instrument by doctor Ferrell and associates³³ and that by Wyatt and collaborators.³⁴ While the scale used by Ferrell et al³³ examined the four areas of quality of life (physical, psychological, social and spiritual), the LTQL, apart from measuring these areas, included some aspects related to social support, physical capacity, spiritual health and somatic aspects. Therefore, the studies presented by the authors Wyatt and Friedman²⁹ and by Wyatt and collaborators³⁴ showed that the quality of life measures in long-term survivors should be different from the ones used in short-term survivors because the instrument LTQL showed that long-term survivors had different priorities.

Are there differences in the quality of life between breast cancer long-term survivors and healthy women?

     Most of the bibliography about the quality of life of breast cancer long-term survivor women is descriptive and transversal and it presents their experiences. There is no doubt that these studies have contributed to improve the understanding of the experiences of this population. Nevertheless, it is also interesting to carry out longitudinal studies that present a broad perspective of the phenomenon or of the problem,³⁵ as well as comparative studies that make it possible to identify differences in the quality of life between survivors and healthy women.
     Some recent studies have showed interest in investigating aspects related to the quality of life of breast cancer long-term survivors. For example, Ganz et al¹⁹ carried out a prospective longitudinal study to determine the quality of life of women that had survived breast cancer for more than five years. Furthermore, the authors examined the changes experienced by these women during that period as well as the impact that antitumoral therapies had on them. They also offered some predictions about the quality of life of the participants. It is important to emphasize that this study was one of the most important ones about survivorship because it showed the opinion of a large number of women that had overcome the disease. The results of this research proved that the physical and emotional well-being of these women was excellent. The investigation just revealed an increase in physical symptoms such as urinary incontinence and vaginal dryness apart from sexual problems. Nevertheless, according to the authors, it had to do with the aging process of the population selected and not with the cancer. Therefore, these results suggest that the quality of life of beast cancer survivor women is high, most women showing quality levels equivalent to these of the healthy population.
     Nevertheless, this does not seem to be the case for women who have been treated with antitumoral therapy. In the same study it was assessed the impact of the treatments and it was identified that the quality levels of women who received chemotherapy or tamoxifen were lower. Particularly, it was determined a substantial change relative to physical functioning. Therefore, if we take this information into account we interpret that the adverse effects of the antitumoral treatments deteriorate the physical state of health over the years. Considering that a large number of breast cancer patients underwent this kind of treatments, it is revealed that the quality of life of a big majority of long-term survivor women is lower to that of healthy women.
     On the other hand, a medical study assessed the psychological effects of breast cancer survivor women.³⁶ In order to do it, researchers compared the degree of post-traumatic stress, the quality of life and the coping strategies used in 39 women that had overcome the disease with 39 women that had never been exposed to a chronic disease. The results of this comparative research revealed that survivor women suffered from higher levels of post-traumatic stress as well as a reduction in the quality of life when compared to the control group. Therefore, the authors of this work concluded that one of the common after-effects amongst patients that had overcome cancer was the persistence of post-traumatic emotional symptoms. Another important thing to take into account in the survival stage of breast cancer women refers to sexuality.³⁷ Dorval et al³⁸ in a comparative study in which authors talked about the opinion of women who had survived eight years with that of a healthy control population, found out that the quality of life of survivor women was similar to that of healthy women, except for some aspects such as variations in sexual satisfaction. Another aspect which is important to highlight during this stage of cancer is the fear to a recurrence^15,39-40 and the uncertainty about the future,⁴¹ which shows a permanent feeling of vulnerability that modifies the quality of life of these women. Once more it is showed that the quality of life of the women who have overcome cancer is not equivalent to that of the healthy population. Furthermore, it seems that overcoming breast cancer does not only affect physical aspects but also psychological and emotional ones. In fact, when comparing the subclinical effects of women that had had breast cancer with these of women who were in screening groups and therefore had not had a diagnosis, Saleeba et al⁴² revealed that survivors experienced a relatively higher incidence of psychological stress when compared to the control group. Besides, results proved that psychological stress after breast cancer diagnosis remained over the years in survivor women.
     Therefore, the studies presented prove that the quality of life of breast cancer long-term survivor women differs from that of healthy women. The evidence reveals that these women may suffer from physical, psychological, social, sexual and spiritual after-effects during the survival stage of the disease, resulting in a reduction of their quality of life.

Conclusions

     In this revision it has been showed that breast cancer long-term survivors, apart from being free from disease, present lower levels of quality of life than the rest of the healthy population. It is for this reason that it is essential for health professionals, nurses included, to assess and to identify the needs of these women with the aim of providing them with an assistance of quality. It is important to remember that Nursing does not only play an important role in the care of patients undergoing treatment and of their families, but also in the stages of diagnosis, survival, recurrence and terminal stage of cancer. Nevertheless, in order to offer the right assistance to this growing population, the first thing health professionals should do is to know about the specific needs of breast cancer Spanish survivor women. It is for this reason that before concluding this paper it is important to highlight the importance of fostering research in Spain on this area of oncologic nursing.

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