Breast Cancer Survivorship: the Role of Rehabilitation According to the International Classification of Functioning Disability and Health—a Scoping Review

Breast cancer (BC) is the most frequent cancer in women worldwide, accounting for 11.7% of total cases, with 2.3 million cases newly diagnosed in 2020 [1•]. Due to earlier diagnoses and more effective treatment, the 5-year survival rate has continued to improve over the last two decades and is now 86% in Italy and Turkey [2]. Male BC cases are less than 1% of all diagnosed breast cancers [3, 4•]; therefore, where not specified, we refer to female BC patients.

With improving survival rates globally [5‐7], many survivors experience short-term, long-term, and late effects from both the cancer and cancer-related treatments. These effects may result in mental, physical, and social health–related issues not only while in active treatment but also during long-term survivorship phase [8, 9]. In the last two decades, distinguished authors have addressed cancer survivorship [10, 11, 12•, 13‐15] with both American Cancer Society and the American Society of Clinical Oncology publishing Breast Cancer Survivorship Care Guidelines [16] to support clinicians in the care for BC survivors. With growing population of BC survivors, the individual, family, and societal challenges for women beyond BC are becoming a critical issue in public health system and require an in-depth reorganization of survivorship care at the local, regional, and national levels. Survivorship care is a significant challenge for the future of BC and all cancers. Rehabilitation medicine is the most appropriate medical specialty for treating cancer survivors suffering from disability related to cancer itself and long-term side effects of treatments [17•].

Rehabilitation can be thought of both as “a general health strategy” [18] and as “a set of interventions” focused on enabling persons at risk or with physical and/or mental health disabling conditions to achieve and maintain optimal functioning and to pursue the best health-related quality of life in their family and social context [18, 19].

According to the International Classification of Functioning Disability and Health (ICF) [20] adopted by the World Health Organization (WHO) in 2001, cancer and its treatments affect body structures and influence body functions, activities, and participation, as well as environmental factors. Specific Comprehensive and Brief ICF Core Sets were subsequently developed for BC to describe function and disability [21].

Therefore, the aim of this scoping review is to define the role of rehabilitation in the BC survivorship within the context of the current ICF BC Core Sets, increase awareness of the needs in BC survivors, and support stakeholders, health professionals and governments to provide optimal care as well as contain healthcare costs.

The authors, with the assistance of the librarian of the National Cancer Institute in Naples, provided a review of indexed PubMed articles from January 1, 2018, to November 9, 2021, using the keywords “breast cancer,” “survivorship,” and “rehabilitation.” Exclusion criteria were articles not in English (both text and abstract); published prior to 2018; including pharmaceutical interventions for cancer and/or treatment-related conditions (e.g., osteoporosis); including population without cancer (excluding non-cancer population as control group); nonhuman studies; letters to the editor, protocols, or preliminary results of major ongoing studies; including survivors with various cancer diagnoses together with BC, unless the results reported by specific cancer types; sample size less than 50 BC patients; specific for a subgroup of BC patients as such as BC and type 2 diabetes; and considering survivorship even during the active treatment phase and/or time after active treatment less than 1 year. Secondly, two of the authors hand-searched PubMed, based on their experience, for additional relevant literature about survivorship care although unrelated to rehabilitation, including the guidelines for BC survivorship and BC Survivorship Care Plans (BC SCPs).

Two reviewers independently extracted data from included studies using a customized data extraction table in Microsoft Excel. In case of disagreement, consensus was achieved by the decision of another reviewer. The following data were extracted: (1) first author, (2) publication year, (3) journal, (4) nationality, (5) type of study, and (6) patient-reported outcome measures.

All the included publications were analyzed with the Comprehensive ICF BC Core Set (CCS) perspective, and were considered related to the Body Structure category, 3rd level s6302 breast and nipple. Therefore, considering the main topics of each paper, the selected articles were assigned to one or more of the ICF BC CCS major components (body function, activity and participation, environmental factors) and linked to specific categories. Finally, the same selected papers were assigned to one or more of the 3 areas of Health: Physical Health, Mental Health and Social Health (Fig. 1).

A total of 181 publications were searched on PubMed. Following the exclusion criteria in the “Methods” section, 63 articles were selected and 118 were excluded. An additional 2 articles were selected by hand-searching; ultimately, 65 papers [22‐30, 31••, 32‐37, 38••, 39, 40, 41•, 42‐61, 62•, 63‐66, 67•, 68‐70, 71•, 72•, 73‐75, 76•, 77, 78•, 79‐83, 84•, 85, 86] in total have been reviewed to extract the main topics and survivors needs (Table 1).

Given the presented studies, it is clear that rehabilitation is an essential part of cancer care in all phases of disease, and especially in survivorship, when the priority of interventions is focused on persons who experienced cancer and need to return to their family and social life. This is a common goal across all types of cancer, and there are many high-quality studies on assessing survivorship in a mixed populations of a variety of cancer diagnoses. However, there is no international consensus on the time framework of survivorship care.

We focused our attention on early or long-term survivorship at least 1 year after the end of active treatments considering the rehabilitation strategy prevalent in the posttreatment phase better than in the acute phase when cancer curative strategy is the main goal [87]. To guarantee the continuum of care beyond diagnosis and active treatment until survivorship, the Survivorship Care Plan (SCP) model was developed. In several countries, oncologists have adopted this model involving general practitioners (GPs) and primary care physicians (PCPs) in the survivorship care. The SCP provides information on cancer and related treatments along with instructions for follow up care; however, equally detailed post-treatment side effects are less frequently included. Despite the recommendations from major bodies and scientific societies (American Cancer Society, American College of Surgeon, and others) to implement the SCPs, there is no strong evidence that SCPs positively impact on level of outcomes in cancer survivors [88•, 89•]. Specific BC SCPs are available including a brief clinical summary and the follow-up planning rather than recommendations to support survivors and their family in carrying out daily life, adopting healthy behaviors, and following rehabilitation programs if indicated [75]. This strategy is still far from optimal. GPs and PCPs have limited time and resources to provide appropriate interventions for a cancer survivor’s physical, mental, and social health needs, including education and empowerment, while continuing to provide comprehensive medical care. However, the addition of the involvement of a physiatrist’s focus on rehabilitation needs and function could specifically address a survivor’s physical, mental, and social health needs.

The multidimensional aspect of BC-related disability is evident considering the assignment of the selected papers to the major components of ICF BC CCS and included categories based on the topics of each paper. A paper is commonly assigned to a couple or more categories of the ICF BC CCS major components but less frequently to 2 or 3 of the areas of health. Out of the 65 selected articles, 31 papers cover a single area of health and 15 are not matched with any area of health because they concern health system and policy.

However, many categories of the ICF BC CCS are not linked to the items of selected papers. On the other hand, the ICF BC CCS does not include many categories recurring in the analyzed papers. In our opinion, the ICF BC Comprehensive and Brief Core Sets are a valuable tool, but they need to be updated. Significant categories are lacking in the BC CCS such as b144 Memory function, b164 High level cognitive function, e125 Products and technology for communication, e130 Products and technology for education, e135 Products and technology for employment, and e140 Products and technology for culture, recreation, and sports. Memory loss and cognitive decline are frequent complaints from BC survivors and can strongly impact their return to work and the maintenance of the same level of pay.

There is a growing interest in the use of computer technology and social media to support BC survivors by providing resources and information regarding physical activity, healthy behavior, cognitive enhancement, and vocational training. Financial burden and loss of work opportunity are strategic issues for individuals and families as well as for society. There are notable disparities in survivors returning to work and sustaining financial burden between developed and underdeveloped countries as well as various socioeconomic groups and geographic (rural versus urban) areas of the same country. Items included between “body functions” and “activity and participation” are traceable to the areas of physical and mental health. Among these problems, some issues have been very well represented for decades such as b435 Lymphedema, fatigue; b455 Exercise tolerance functions; and b740 Muscle endurance functions, psychological needs (d240 Handling stress and other psychological demands). However, new needs are emerging including weight management, sexual and intimate life difficulties, and daily challenges that have been less reported in previous rehabilitation studies. These issues are evident in many studies on quality of life (QoL) which is a significant outcome in cancer care and a substantial endpoint in many clinical trials. QoL is a powerful indicator for outcomes in all chronic diseases as well as in cancer. Among all QoL measurement scales, the most used remains the MOS 36-item Short-Form Health Survey (SF-36) that is widely validated in several chronic diseases. However, SF-36 is not cancer specific [90]. There are current studies to develop specific cancer survivorship QoL measurement instrument [91•]. In our opinion, it will be successful if QoL measurement becomes an essential step in survivor’s rehabilitation assessment to further highlight the role of rehabilitation in cancer survivorship care. As social health is a key factor to QoL, it will be important to leverage technology to help provide information and support for the self-management of a healthy lifestyle including nutrition and physical activity.

BC survivors are asking for support from the health care systems and policies; however, these systems are still far from offering satisfactory support to patients and families. The reality of cancer care is changing with increasing prevalence of BC survivors, needing interventions covering aspects of physical, mental, and social health even after their active treatment and surveillance have completed. Rehabilitation services could be the bridge between the comprehensive cancer center–based model and primary care–based model, offering each cancer survivor a tailored treatment along with an individual rehabilitative plan including and not excluding the model of SCP. This paper is far from giving a certain answer on how to manage cancer survivorship, but we hope to identify the need for supporting policy and health system changes to bridge the gap between active treatment and survivorship beyond cancer.

The findings of this scoping review report that BC survivors are a growing population with emerging issues that strongly impact their life. The ICF BC CCS, along with its brief version, remains an essential tool in rehabilitation assessment for BC survivors even though it needs updating and to be associated with quality of life evaluation scales. The role of rehabilitation is crucial in BC survivorship both to give personalized answers to women beyond BC and to support the proper allocation of available resources for survivorship in each country within their means.