Survivorship care plans for breast cancer patients: understanding the quality of the available evidence

Original Article


Survivorship care plans for breast cancer patients: understanding the quality of the available evidence


V. D’Souza, PhD*, H. Daudt, PhD*, A. Kazanjian, DrSoc*


doi: https://doi.org/10.3747/co.24.3632


ABSTRACT

Aim

The overall goal of the present study was to contribute to consistency in the provincial approach to survivorship care planning through knowledge synthesis and exchange. Our review focused on the research concerning the physical and emotional challenges of breast cancer (bca) patients and survivors and the effects of the interventions that have been used for lessening those challenges.

Methods

The psychosocial topics identified in bca survivorship care plans created by two different initiatives in our province provided the platform for our search criteria: quality of life (qol), sexual function, fatigue, and lifestyle behaviours. We conducted an umbrella review to retrieve the best possible evidence, and only reviews investigating the intended outcomes in bca survivors and having moderate-to-high methodologic quality scores were included.

Results

Of 486 reports retrieved, 51 reviews met the inclusion criteria and form part of the synthesis. Our results indicate that bca patients and survivors experience numerous physical and emotional challenges and that interventions such as physical activity, psychoeducation, yoga, and mindfulness-based stress reduction are beneficial in alleviating those challenges.

Conclusions

Our study findings support the existing survivorship care plans in our province with respect to the physical and emotional challenges that bca survivors often face. However, the literature concerning cancer risks specific to bca survivors is scant. Although systematic reviews are considered to be the “gold standard” in knowledge synthesis, our findings suggest that much remains to be done in the area of synthesis research to better guide practice in cancer survivorship.

KEYWORDS: Breast cancer, survivorship, survivorship care planning, psychosocial concerns

INTRODUCTION

Breast cancer (bca) is the most common cancer among women in both developed and developing countries13. Advancements in screening, diagnostic techniques, and cancer treatments have increased the survival rate for women with bca4. Although an overwhelming menu of treatment options to fight this cancer is available, no treatment is devoid of side effects. And like other cancer survivors, bca survivors experience numerous treatment-related challenges, the frequent ones being premature menopause, infertility, impaired physical and psychosocial functioning, and fear of a recurrence or a second primary cancer5,6.

After the U.S. Institute of Medicine made its recommendation in 20067, survivorship care plans (scps) were introduced in North America and Europe to help cancer survivors as they move from treatment into the next phase of their lives. Substantial survivorship research and knowledge implementation efforts have occurred in the United States and the United Kingdom810. In the United States, the American Cancer Society, the Centers for Disease Control and Prevention, the livestrong Foundation, and the National Cancer Institute have been collaborating to enhance the translation of survivorship research into evidence-based interventions11. Although the Canadian Partnership Against Cancer made survivorship and scps a practice and research priority in 20097,12, research pertaining to the integration of survivorship care into primary care in Canada is much more recent1319.

Survivorship care plans are personalized records of care and follow-up, which include potential post-treatment problems, signs of recurrence, guidelines for lifestyle modifications, and important community resources. The primary purpose of scps is to improve patient-reported or health-related outcomes, or both, in cancer survivors20,21. No scp format has been universally accepted, and thus, many cancer care facilities develop their own scps, leading to duplication of effort and scp content that varies from institution to institution. A study that evaluated 16 scps from several developed countries found substantial variations with respect to their content and delivery approaches22.

In British Columbia, two independent initiatives led by clinician–researchers from two BC Cancer Agency centres located in two different geographic regions and funded by different external sources, created scps for women with bca. No or little coordination in terms of format, language, or content occurred. Thus, the overall goal of the present study was to contribute to consistency in the provincial approach to survivorship care planning through knowledge synthesis and exchange. Our review focuses on the research concerning the physical and emotional challenges of bca patients and survivors and the effects of the interventions that have been used for lessening those challenges.

METHODS

This umbrella review—that is, a systematic review of systematic reviews23—was conducted in accordance with the prisma (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines24.

The electronic databases medline, psycinfo, Cochrane Library, cinahl, and embase were systematically searched using both key words and mesh terms. Hand searches of reference lists in the identified articles were also conducted to gather all the available literature about the outcomes of interest. The search was conducted during April and May 2013 and was updated in December 2014 and again in April 2016 by the first author (VDS) with the support of the BC Cancer Agency–Vancouver Island Centre medical librarian. Grey literature was included only if it contained a detailed description of the included studies while also meeting the inclusion criteria.

Based on our analysis of the scps created by the two clinical research groups in British Columbia, we defined the outcomes of interest (presented in Table i, together with the search terms used). Systematic reviews, meta-analyses, and any kinds of reviews were included if they were conducted with at least 50 bca patients or survivors, if they reported any of the outcomes of interest, and if they had at least a moderate quality score of 5 or greater. Studies conducted with a mixed group of cancer patients were included only if they reported the measured outcomes separately for bca patients and survivors.

TABLE I The outcomes of interest with respect to breast cancer patients and survivors

 

The quality of the included studies was assessed using amstar25, a reliable and valid measurement tool to assess the methodologic quality of systematic reviews26. The amstar score characterizes the quality of systematic reviews at three levels, with 0–4 being considered poor quality; 5–7, moderate quality; and 8 and greater, high quality. All potentially eligible studies were scored independently by two authors (VDS, HD). Discrepancies were resolved by discussion between those authors; if necessary, the third author (AK) was consulted. Studies with a quality score of 5 or greater were included in the review.

RESULTS

The search identified 486 citations, of which 74 scientific reviews met the inclusion criteria. Of those seventy-four reviews, twenty-three were eliminated (reasons presented in Table ii). The remaining fifty-one systematic reviews or meta-analyses2777 were included in the synthesis. The details of the search for, and inclusion or exclusion of, articles are presented in Figure 1.

TABLE II Eliminated articles and the reason for elimination

 

Of the fifty-one included reviews, twenty-six were of high quality (scores ≥ 8, with a mean quality score of 7.24 ± 1.5). Table iii presents the general characteristics of the included studies; their overall findings; the summary risk ratio estimates, odds ratios, effect sizes or standardized mean differences (when available); and the quality scores. No reviews that investigated the cancer risk in bca patients or survivors were found. Given the diversity of the included reviews and the heterogeneity in the measured outcomes, the data were synthesized qualitatively and were summarized in categories as described in the subsections that follow.

TABLE III The general characteristics of the included reviews







 

Two streams of studies were delineated:

  • ■ Cancer- or treatment-related physical and emotional challenges in bca patients or survivors, or both

  • ■ Interventions used in bca patients or survivors, or both, to alleviate identified challenges and the effects of those interventions

Cancer- or Cancer Treatment–Related Challenges

Of the included reviews, thirteen reported challenges faced by bca patients and survivors2738,40. Their findings are categorized and described next.

Anxiety, Depression, and Distress

Five reviews investigated anxiety, distress, and symptoms of depression in bca patients and survivors3034. According to those reviews, anxiety and distress are frequently observed in this population and seem to persist for a very long time, although the severity can vary from person to person and across time after the diagnosis.

In one review, anxiety was investigated in 1894 bca patients receiving various types of cancer treatments. The authors reported that anxiety was a pervasive issue in bca patients who undergo any of the three most common bca treatment modalities (surgery, chemotherapy, and radiotherapy) and that it tends to persist beyond the acute stage of treatment31. The authors also observed higher levels of anxiety among women who underwent mastectomy than among those who underwent breast-conserving therapy. Compared with other treatments, chemotherapy was associated with higher levels of anxiety, and anxiety was highest before the first chemotherapy infusion.

According to another review that investigated depression in bca survivors, levels of depressive symptoms were higher in younger survivors (<50 years of age) than in older survivors (>50 years of age) and in age-matched cancer-free women32. Higher levels of anxiety and depressive symptoms were found to be associated with poor social functioning30,33, poor physical functioning30,32, premature menopause, infertility concerns30,32, weight gain, body image, physical inactivity32, fear of follow-up diagnostic tests, cancer recurrence, and sexual and relationship problems34.

Fatigue

Three reviews reported fatigue in bca patients and survivors28,30,38. According to those reviews, fatigue is one of the most frequently observed side effects during the active treatment period and beyond28,30. One review that investigated fatigue in 526 bca patients and survivors reported that radiation was significantly and positively associated with fatigue, indicating that patients who received radiation treatment experienced higher levels of fatigue28. Other factors that were associated with increased fatigue were decreased appetite, nausea, vomiting, diarrhea, decreased body mass index, and anxiety and depression. Disease staging and neoadjuvant chemotherapy were not found to be associated with the level of fatigue28.

Quality of Life

Seven reviews reported on the quality of life (qol) of bca patients and survivors28,29,3235,37, and according to those reviews, bca patients and survivors often experience poorer qol. Two reviews found an association between qol and age, with considerably poorer qol being experienced by younger (≤50 years of age) than by older bca patients and survivors32,34. In addition, positive associations were also observed for life stage; comorbid conditions; increased physical symptoms such as breast pain and fatigue; physical, emotional, and psychological dysfunctions; sexual challenges; disease stage; relapse; and active cancer treatment.

One review investigated the types of treatment given to bca patients and their effects on qol, finding that qol was poorer in patients who received chemotherapy or who underwent mastectomy than in those who underwent breast-conserving surgeries34. In one review, the qol of 2447 Latina bca survivors was compared with that of non-Latina bca survivors. Latina women were found to experience poorer qol than their non-Latina counterparts33. Additionally, bca-related lymphedema and higher levels of fatigue were significantly associated with poorer qol28,29. The other factors that were associated with qol were poorer mental and physical health, poor social functioning, greater distress, and greater fear of recurrence.

Lymphedema

Two reviews reported on bca-related lymphedema27,29. One estimated the risk for lymphedema based on the treatment that the bca patients received, and they observed that the risk for lymphedema was higher in patients who underwent mastectomy than in those who underwent lumpectomy; higher in those who had an axillary dissection than in those who had no axillary dissection; higher in those who underwent axillary dissection than in those who had a sentinel lymph node biopsy; and higher in those who received radiation and in those who had positive axillary nodes than in those who did not. The second review reported on the effect of lymphedema on qol in bca patients and survivors, finding that lymphedema was significantly associated with poor physical, psychological, and social well-being, and with poorer qol, with the effects being more pronounced in younger survivors (<40 years of age)29.

Cognitive Functioning

Only one review investigated cognitive functioning in bca survivors, and it observed significant deficits in cognitive functioning and in verbal and visuospatial abilities for patients who received chemotherapy compared with those who did not, although the magnitude of the effect was small36. Age, education, time since treatment, and endocrine therapy did not moderate the observed deficits.

 


 

FIGURE 1 The process used to search for and select the final articles.

Urinary Challenges

A single review investigated “urinary challenges” in 2500 bca survivors37. It reported that, of their cohort, 23% experienced severe urinary dysfunctions, 12% had pain on micturition, and 58% experienced mild-to-moderate difficulties with bladder control (while laughing, crying, or performing simple tasks).

Return to Work

Return to work was investigated in one review, according to which, bca patients and survivors often face a miscellany of challenges that affect the return-to-work decision38. They frequently experienced extreme fatigue and fear of recurrence. Also, they were apprehensive about their physical appearance and changed body image; about disclosing the diagnosis to their employer, colleagues, and relatives; and about their ability to work, therefore fearing job loss. Some of the important observations were that the women’s perception about their job or work had changed: they valued work less than before, and their motivation and priorities changed and became more goal-focused toward life. Some of the women felt discriminated against because of their cancer; some felt annoyed by questions from colleagues and heard hurtful remarks; some experienced awkward moments of social silence at workplaces; and some required changes in their work situation, such as task modifications that could marginalize them further. Also, some reported not receiving needed advice or support for returning to work, and thus found the return to work difficult, leading to job loss.

Religion and Spirituality

One review investigated the relations between religious and spiritual constructs and psychological well-being in 2582 bca survivors40. Although the findings suggest that religion and spirituality (religious coping, religious behaviours, God’s image, faith) could play a role in improving or maintaining psychological well-being, multiple operational definitions for religion and spirituality and the challenges involved in quantifying “spirituality” meant that conclusions could not be drawn.

Interventions Used to Alleviate Challenges

Physical Activity Interventions

Twenty-three reviews investigated the effects on bca patients and survivors of various physical activity interventions4163. The types of physical activity and their effects are presented in detail in Table iv. The findings of the included reviews indicate that resistance training and aerobics provide significant benefit for physical42,44,46,48,49,5254,56,61,63 and emotional42,45,47,49,54,55,61,63 functioning, and that recreational physical activities or any kind of light-to-vigorous physical activity provides a survival benefit41,51

TABLE IV Results of the studies that investigated the effect of physical activity (PA) on breast cancer (BCa) patients and survivors


 

Psychoeducational Interventions

Of the eight scientific reviews40,6062,7377 that reported the effects of psychoeducational interventions such as cognitive–behavioural techniques or education for bca patients and survivors, one61 reported statistically significant benefits for fatigue (p < 0.001), depression (p < 0.001), anxiety (p < 0.001), and body image (p < 0.051). Two reviews found clinically important benefits for anxiety, depression, and stress levels with moderate-intensity activity60,73; one reported benefits for mobility, muscle strength, and general fitness, and clinically important benefits for sexual functioning62; four reported short-term benefits for overall survival with low-intensity activity, and also improvements in mood and pain reduction7477; and yet another reported significant reductions in fatigue, nausea, oral mucositis, diarrhea, constipation, pain, and insomnia, and improved qol60.

Combined Interventions

Two reviews investigated the effects on bca patients and survivors of combinations of interventions39,64.

The first review investigated the effects of physical activity combined with psychological counselling (individually or in group sessions) provided to bca patients and survivors for physical and social recovery from breast loss. The authors found that 75%–85% of participants returned to work by about 18 months’ follow-up. However, that result might not be generalizable, because three of the four studies included in the review had been published 25 years earlier.

The second review examined the effects of combinations of interventions on bca patients and survivors without analyzing the effects separately by intervention type64. The interventions included combinations of inpatient rehabilitation, psychological education, psychological education and information, self-help education, information support, information support plus cognitive–behavioural techniques, and exercise together with behavioural therapy. Such interventions were beneficial with respect to cognition, health-related qol, and social well-being.

Complementary and Alternative Therapies

Ten reviews reported on the effects of complementary and alternative therapies in bca patients and survivors40,60,6572. Of those ten, six investigated the effects of a yoga intervention60,6569; two, the effect of tai chi60,70; one, the effect of reflexology71; one, the effect of polarity therapy60; and one, the effect of mindfulness-based stress reduction therapy72. In addition, one review that had investigated psychosocial well-being, religion, and spirituality in eighteen observational studies had included one randomized controlled trial (181 women with bca) using meditation, affirmation, imagery, and ritual as the test intervention, comparing that group with a control group receiving cognitive–behavioural therapy40. The test intervention was associated with improvements in spiritual integration (p = 0.001) and higher satisfaction (p = 0.006). Yoga was significantly associated with lower levels of fatigue67, anxiety, and depression, and with better qol65,66,68,69. Mindfulness-based stress reduction was associated with significant reductions in stress, anxiety, and depression in bca patients and survivors72. Although polarity treatment, tai chi, and reflexology showed important benefits for cancer-related fatigue in bca survivors, those results are inconclusive because of small sample sizes and high risk for bias.

DISCUSSION

The overall goal of the present study was to contribute to a consistent, province-wide, evidence-based approach to survivorship care planning by synthesizing the published literature about care for bca survivors and by updating the evidentiary base used for the scps created in our province. To our knowledge, this umbrella review is the first to comprehensively summarize the scientific evidence about the psychosocial aspects of bca survivorship. It is important to note that, although scps aim to support people with cancer as they complete treatment and usually provide information and recommendations to lessen subsequent cancer risk, our review did not find any systematic reviews that investigated the risk of a second primary cancer or bca recurrence. Within the limits of the study design, our findings suggest that, compared with the general population, bca patients and survivors frequently experience higher levels of anxiety and depression, poorer qol, higher levels of fatigue, poorer physical functioning, and urinary dysfunction. Interventions such as physical activity, psychoeducation, yoga, and mindfulness-based stress reduction are beneficial with respect to fatigue, anxiety, depression, stress, fatigue, qol, and physical functioning.

This synthesis project, which forms a part of our quality improvement initiatives, aimed to support the production of evidence-based scps and information materials that health care providers can share with bca survivors in our province. Thus, our goal was to use a systematic review of systematic reviews to synthesize, within a short timeframe, the best available evidence to inform a more comprehensive project on scps. The findings of this umbrella review accord with the existing bca scps in our province with respect to the physical and emotional challenges of bca survivors and the dietary and physical activity recommendations (Table v). However, literature concerning the cancer risks specific to bca survivors is lacking.

TABLE V Outcomes of interest retrieved from the survivorship care plans (SCPs)


 

Although bca is one of the well-studied cancers, the serious dearth in the systematically synthesized literature concerning cancer risk in bca patients and survivors raises a serious question about the extent to which the recommendations made by bca clinicians and scps concerning cancer prevention are evidence-based. Interestingly, Norman et al.78 described a similar challenge when reviewing the evidence for the effect of lifestyle factors on bca recurrence in early 2007. Although the authors mentioned a number of trials focused on survivors being conducted at that time, we found no systematic reviews that reported on the risk of recurrence or a second primary cancer.

In spite of the serious knowledge gap concerning lifestyle modifications, many bca scps—including the scps from our province—continue to recommend lifestyle modifications to lower future bca risk7981. Nevertheless, we identified eighteen reviews (not included in the present umbrella review) of mild-to-moderate quality that investigated bca risk in general populations (Table ii). According to those reviews, alcohol and caffeine intake increase the risk, and healthy diet, fish (those containing long-chain fatty acids), and vitamin D and calcium intake lower the bca risk in the general population; findings for soy intake and multivitamin supplements were inconclusive. Although those findings are important in the primary prevention of bca, can that knowledge be applied for secondary prevention in bca patients and survivors?

Systematically conducted reviews have been considered the “gold standard” in knowledge synthesis24,82,83, but we have identified a significant gap in the scientific literature that is crucial to bca survivorship care planning. Much has to be done in the area of synthesis research on survivorship, confirming what Luctkar-Flude et al.16 recently reported. We are therefore highlighting the urgent need for appropriate studies targeting secondary prevention of cancer for bca survivors, especially studies that explore lifestyle and behavioural factors, including diet. Campbell et al.84 indicated that support for patient self-management and use of evidence-based health promotion interventions were areas of relative weakness when survivorship models of care were analyzed in 8 livestrong Survivorship Centers of Excellence Network sites in the United States, corroborating our statement.

Our study findings concerning fatigue, anxiety, depression, and qol in bca patients and survivors further confirm what was reported recently by Sisler et al.19. It is typical that, when faced with certain degrees of physical or functional challenge, a person’s psychological adjustment and qol can be impaired85,86.

Our umbrella review included a large number of scientific reviews that investigated the effects of various types of interventions on bca patients and survivors. Of those interventions, physical activity and psychoeducation seem promising with respect to fatigue, anxiety, depression, stress, physical functioning, and qol in bca patients and survivors42,54,61,63. The findings concerning physical activity are in line with a recent report published by Segal et al.18. Treatments for bca—such as ovarian suppression, chemotherapy, and endocrine therapies—can lead to severe menopausal symptoms in women87,88, and it has been postulated that estrogen deficiency might be leading to atrophy of the urinary tract, leading to urinary symptoms and sexual dysfunctions88,89. Although sexual dysfunction is a frequently observed side effect of treatment in bca patients and survivors, we found only one review that investigated the effects of exercise, counselling, and information interventions on sexual functioning90. The review reported that counselling seemed to be beneficial, but its findings remain inconclusive because of methodology flaws and a high risk for bias found both in the review itself and in the included primary studies.

The following limitations should be kept in mind in interpreting our results. Although our umbrella review included only moderate- or high-quality systematic reviews and meta-analyses, we had no control over the studies that were included in those publications. The systematic reviews—but not the original studies included in those reviews—can be assessed using amstar. Even when quality assessments were performed in the included reviews, the tools used for those assessments varied widely. We came across many reviews that reported inconclusive findings because of the heterogeneities that they observed. And heterogeneities were not restricted to measured outcomes alone; they also pertained to the measuring tools used, to follow-up periods, to the populations studied, and to the contradictory findings observed.

While recognizing those limitations, a major strength of our study is that the umbrella review was very rigorously conducted. Decision-makers are increasingly required to make evidence-informed policy decisions and often require evidence within short timeframes. In our umbrella review, we collated and highlighted the existing scientific evidence that is of superior quality, and we present a snapshot of the events and challenges that are important in bca survivorship. The amstar tool used here to assess the quality of the included reviews is reliable for quality assessment, giving us confidence in the results we have reported.

Our umbrella review combines data from high-quality systematic reviews and summarizes the best evidence available to inform clinicians delivering scps to people affected by bca. Our findings also accord with the recently published American Cancer Society and American Society of Clinical Oncology bca survivorship guideline10. We postulate that, in the absence of more germane systematic reviews on cancer risk for bca patients and survivors, the information presented here is current and reliable, and can help clinicians in making recommendations to women completing treatment for bca and living with or beyond cancer, complementing those recently published bca survivorship guidelines. Furthermore, our review has generated more research questions and hypotheses, thus pointing to the need for more studies that are important in survivorship care planning for women with bca.

CONCLUSIONS

Our study findings support existing scps in our province concerning the physical and emotional challenges that bca survivors often face. However, literature concerning the cancer risks specific to bca survivors is sparse. Although systematically conducted reviews are the “gold standard” in knowledge synthesis, our findings suggest that much remains to be done in the area of synthesis research to better guide practice in cancer survivorship.

CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none.

AUTHOR AFFILIATIONS

*BC Cancer Agency–Vancouver Island Centre, Victoria, BC;,
School of Population and Public Health, Faculty of Medicine, University of British Columbia, Vancouver, BC..

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Correspondence to: Violet D’Souza, BC Cancer Agency–Vancouver Island Centre, 2410 Lee Avenue, Victoria, British Columbia V8R 6V5. E-mail: violet.dsouza@mail.mcgill.ca

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Current Oncology, VOLUME 24, NUMBER 6, December 2017








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ISSN: 1198-0052 (Print) ISSN: 1718-7729 (Online)