According to the World Health Organization, breast cancer is the most common cancer affecting women worldwide with an estimated 1.67 million new cases in 2012 – accounting for 25% of all cancers.1 In less-developed world regions, there are slightly more cases (883,000) of breast cancer than in developed countries (794,000).1 In Denmark, one in every nine women will be diagnosed with breast cancer during her life.2
Worldwide, breast cancer ranks as the fifth cause of death from cancer overall.1 The five-year age-standardized survival rate for breast cancer has increased from 78% in 1978 to 84% in 2011 in Denmark.3 This trend is likely due to implementation of the national mammography screening program, which has increased the possibility that breast cancer is diagnosed at an earlier stage. In addition, improved surgical techniques and more effective adjuvant treatment possibilities have reduced the risk of dying from the disease.3 Improvement in breast cancer detection, and diverse and more effective modality regimens have improved survival. Nevertheless, they may contribute to women experiencing a prolonged period of distress. Distress represents a continuum ranging from feelings of vulnerability, grief and worry to depression, anxiety, panic, social isolation and existential and spiritual crisis.4
A policy of early discharge practised in most countries reduces the surveillance period5,6 and increases the risk that distress is unnoticed and therefore untreated among women taking part in surgical continuity of care for breast cancer. In this systematic review protocol, surgical continuity of care is defined as the time period from diagnosis of breast cancer to the start of adjuvant therapy or follow-up. According to Purushotham et al.,7 discharge within 48 h after breast cancer surgery did not lead to increased psychological morbidity, and de Kok et al.8 also found that early discharge was feasible and safe. The healthcare system has been noted to benefit from early discharge with regard to saved bed days.7
Receiving a diagnosis of breast cancer is a key turning point in life, and the majority of women experience distress following diagnosis and treatment for breast cancer.9,10 Breast cancer also has a profound impact on the couple's relationship, from diagnosis through survivorship, leading to couple distress such as distancing and abandonment.11 However, the published rates of distress differ between research studies regarding breast cancer patients, which may depend upon different measurement tools and methods and/or different measurement times. Initial distress can be extreme, persistent and presage a psychiatric disorder such as major depression.12 According to Suppli et al.,13 25% of breast cancer patients used antidepressants at some time after diagnosis even though the rates of prescriptions do not entirely reflect the rate of depression. The diagnosis of breast cancer confronts women with their risk of dying14 because it is a potentially life-threatening disease. One of the most frequently reported psychological symptoms is a lifelong fear of recurrence, which represents a continuing problem in women with breast cancer.15 Fear of recurrence decreases overall quality of life as well as lower self-reported physical and mental health, causing considerable disruption in social functioning and relationship.15
During surgical continuity of care, the women are afraid of the risk of further surgery and/or adjuvant treatment,16 which may signify that the cancer is more aggressive. Women with breast cancer are also exposed to distinct changes in their physical appearance such as loss or disfigurement of one or both breasts and skin changes from radiotherapy. Chemotherapy and/or anti-hormone treatment may also contribute to a change in physical appearance such as weight changes.11 Some women also experience reduced mobility in shoulders and arms, loss of sensations in fingers and arms or/and lymphedema.17,18 These bodily changes may impact self-image, self-confidence, sexuality, activity and rest,17 which may lead to fear about the ability to form an intimate relationship in the future.18
A diagnosis of breast cancer may precipitate complex changes in women's identity as females and mothers.19,20 According to Fisher and O’Connor,19 women construct and reconstruct their identities as mothers in the context of living with breast cancer. Their identity as mothers is innately entwined with meeting the emotional, social and physical needs of their children. The diagnosis and treatment for breast cancer often implied the inability to undertake their mothering role in the same way they had prior to the diagnosis. Being objectified to a “breast cancer patient” by healthcare providers and not a mother suffering from breast cancer with responsibilities for their children may imply that the identity as a mother is changed, which can cause additional distress and uncertainty.19
While most women with breast cancer may experience distress, McGarry et al.21 indicated that the supportive needs of a large proportion of women with breast cancer were not adequately met. This included inconsistent assessment and follow-up of the emotional needs leading to increased and often silent suffering. To increase their wellbeing, women confronting breast cancer wish to feel addressed personally, so that support and care suit their individual needs, wishes and particularities.10 Failure to detect and treat severe distress may limit the outcome of cancer therapy, impact quality of life and ultimately place additional cost to the healthcare systems.22 Timely recognition and treatment of distress for women diagnosed with breast cancer is essential. Identifying factors that may affect women's experience of distress in surgical continuity of care for breast cancer is important for understanding the issues patients face in order that adequately support and care can be provided. This systematic review aims to identify, appraise and synthesize the evidence on perceived factors that affect distress among women taking part in surgical continuity of care for breast cancer to provide evidence for improving supportive care.
An initial search in MEDLINE, CINAHL, Embase, PsycInfo and JBI Database of Systematic Reviews and Implementation Reports indicated that no systematic review exists or is in progress at this time. However, there is a body of knowledge that can be assessed to assist healthcare professionals in their clinical practice to identify and be attentive to factors affecting distress among women taking part in surgical continuity of care for breast cancer.
Types of participants
The current review will consider studies that include women at any time point from the diagnosis of breast cancer through surgery to start of adjuvant treatment or follow-up. Only studies with women having a diagnosis of primary breast cancer will be included. Studies focusing on women who have gone through adjuvant treatment before breast cancer surgery will be excluded.
Phenomena of interest
The current review will consider studies that explore the experience of perceived factors affecting distress among women with breast cancer from the point of diagnosis to the initiation of adjuvant treatment or follow-up. The perceived factors can either have an alleviating effect on distress or contribute to an increase in distress.
The current review will consider studies that explore perceived factors affecting distress in surgical continuity of care for breast cancer regardless of country or culture.
Types of studies
The review will consider studies that focus on qualitative data including, but not limited to, design such as phenomenology, grounded theory, ethnography, action research and feminist research.
A three-step search strategy will be utilized in this review. An initial search in MEDLINE, CINAHL, Embase and PsycInfo will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified articles will be searched for additional studies. Studies published in English, Danish, German, Norwegian and Swedish from 2005 will be considered for inclusion in this review. This date range has been chosen because cultural changes in female identity and focus on bodily issues are constantly changing and far-reaching organizational and structural changes have taken place within the healthcare system for the last 10 years. The literature search will be carried out under the guidance of a research librarian.
The databases to be searched include
CINAHL, Embase, MEDLINE, Swemed+, PsycInfo and ProQuest.
Initial keywords to be used will be breast cancer, distress, women, surgical continuity of care, surgery, quality of life, anxiety, depression and concern.
The following homepages will be searched:
www.dbcg.dk (Danish Breast Cancer Group)
www.cancer.dk (Danish Cancer Society)
www.brystkraeft.dk (Danish Breast Cancer Organization)
www.asco.org (American Society of Clinical Oncology)
www.nbcj.org.au (National Breast Cancer Foundation)
www.bcna.org.au (Breast Cancer Network Australia)
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Authors of primary studies will be contacted for missing information or to clarify unclear data.
Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II) to minimize error and provide a historical record of decisions made about the data set for categorization and synthesis. The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
Qualitative research findings will, in possible cases, be pooled using JBI-QARI. This step aims to assemble findings from the qualitative research by categorizing these findings into groups on the basis of similarity in meaning and not on the basis of study types. The categories are then subjected to a meta-synthesis to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Before this process, the reviewers will have established documentation on how to assign findings to categories and how to aggregate categories into synthesized findings.
The initial literature search has been conducted in corporation with Jens Peter Andersen from The Medical Library, Aalborg University Hospital.
Appendix I: Appraisal instrument
QARI appraisal instrument
Appendix II: Data extraction instrument
QARI data extraction instrument
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