Arm Disability. after Breast Cancer. Exploring the impact of arm morbidity

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1 Arm Disability after Breast Cancer Research Team Roanne Thomas University of Ottawa Tom Hack University of Manitoba Winkle Kwan B.C. Cancer Agency Bo Miedema Dalhousie Family Medicine Teaching Unit Liz Quinlan University of Saskatchewan Andrea Tilley Atlantic Health Services Corporation Sue Tatemichi Dalhousie Family Medicine Teaching Unit Anna Towers McGill University Journals of Publications Journal of Cancer Survivorship; Journal of Disability Policy Studies Journal of Lymphoedema; Psycho- Oncology Work: A Journal of Prevention, Assessment and Rehabilitation; Canadian Journal of Surgery; Current Oncology; Oncology Nursing Forum Exploring the impact of arm morbidity Many Canadian breast cancer survivors will, Already, this research has fostered the unfortunately, experience arm problems after development of additional studies, including the treatment. Pain, range of motion restrictions From Dissemination to Intervention project, in and lymphedema may all be disabling. It is which women with lymphedema after breast therefore critical to examine the impact of these cancer contributed to the development of an challenges. In addition to the lack of a national ethnodrama script. The resulting video can be rehabilitation program, the knowledge base viewed via a link at The surrounding disability after breast cancer has photos on the cover of this report were been limited. Studies of its effects on childcare, prepared by participants in this study. They intimacy, or paid and unpaid labour are minimal. depict the modifications to everyday life As a result of insufficient research, health care described by women with lymphedema, professionals are unable to adequately address including a need to unlock information and find arm problems following breast cancer. With this new tools to address their concerns. in mind, our research team was assembled with Research in the area of disability after breast the goal of executing a nation-wide study at four cancer continues and I invite you to explore our sites (Fredericton/Saint John, Montreal, website for information about presentations, Winnipeg and Surrey). Participants have been publications and future work. followed for 5 years to generate knowledge regarding the ways in which arm problems manifest, and to what extent these problems may be disabling. To date, disability has been examined within the domains of work and labour, family, and leisure activities. Ultimately, the study will create a foundation for cancer rehabilitation and associated policy development on both a national and international stage. Produced May 1, 2012

2 Arm morbidity and disability after breast cancer: New directions for care Many women suffer from arm-morbidity (swelling, pain, restricted range of motion[rom]) following medical treatment for breast cancer Lack of standardized and substantiated measures for assessing arm morbidity symptoms may inhibit the response of healthcare professionals Arm morbidity pain significantly affects activities of daily living and the quality of life of breast cancer survivors Healthcare professionals may increase their ability to assess, treat, and educate patients through pertinent questioning of patients regarding activities of daily living Addresses gaps in the literature about arm morbidity and its impact on quality of life, impact on functionality, prevention, and psychosocial aspects for breast cancer survivors. Assesses the impact of arm morbidity on 347 breast cancer survivors, at least 6 months after surgical interventions. Fifty-nine percent of survivors reported at least some ROM restriction Shows that the conditions of arm morbidity occur discretely and can impede daily functioning, yet are often under-reported by survivors Argue that healthcare practitioners could elicit valuable information with a few simple questions about sensations and activities of daily living Suggest that simple tests screening for pain and ROM restrictions can adequately illustrate arm morbidity and its impact on the quality of life of survivors, and help health practitioners address these impediments more effectively Call for additional research to ascertain possible relationships among various types of arm morbidity and the duration of symptoms beyond the 6 12 month period after surgery. The ongoing longitudinal study will produce new information on breast cancer survivors experiences with arm morbidity over a 5 year period A literature review has revealed that little attention has been paid to pain or limitations in range of motion. This longitudinal study seeks to address this gap, and by doing so helps to establish a foundation for the creation of rehabilitation policies and practices for women with breast cancer Roanne Thomas-MacLean, Tom Hack, Winkle Kwan, Anna Towers, Baukje Miedema, and Andrea Tilley Arm morbidity and disability after breast cancer: New directions for care. Oncology Nursing Forum, 35(1), doi: /08.onf

3 Pain and disability: Are we ignoring parts of the picture? Clinical experience illustrates that many patients with lymphedema come to their health practitioners with co-morbidities including pain, numbness, reduced joint movement, and functional problems To study this issue, the arm morbidity (including pain, range of motion restrictions, and lymphedema) experiences of >700 breast cancer survivors over a period of five years will be charted as part of a multi-site Canadian study A recently published Best Practices Guideline document outlines the importance of pain assessment for lymphedema patients, but no specific training is provided to lymphedema clinic physicians for chronic pain management Discusses the extent of arm morbidity and its implications for the quality of life of breast cancer survivors Highlights the lack of support encountered by breast cancer survivors when dealing with the pain, swelling, and range of motion limitations associated with lymphedema Calls on health practitioners to consider co-morbidities, pain, and disability as symptoms related to lymphedema Illustrate that 39.4% of breast cancer patients endured pain related to their medical treatment, 12% experienced swelling, and more than 50% had range of motion (ROM) restrictions. Discuss the implications that these co-maladies have on survivors lives: women reported difficulties completing heavy household chores, gardening/yard work, making a bed, carrying shopping bags and briefcases, carrying objects weighing ten pounds or more, and putting on pullovers/sweaters Question the role of those working in lymphedema clinics beyond direct medical treatment. Call for additional, longitudinal research into the trajectory of all types of arm morbidity, along with their inter-relationships, in order to demonstrate the need for comprehensive rehabilitation This publication firmly suggests that interdisciplinary programs are needed to integrate the collective knowledge of physiotherapists, kinesiologists, pain experts, social worker, and others to better address the challenges faced by breast cancer survivors post-surgery Anna Towers Pain and disability: Are we ignoring parts of the picture? Journal of Lymphedema, 3(1), 8.

4 Predicting recreational difficulties and decreased leisure activities in women 6-12 months post breast cancer surgery Arm morbidity is lymphedema (swelling), limited range of motion and arm pain suffered by breast cancer survivors post-surgery Mixed information has emerged regarding whether or not physical activities may trigger or exacerbate arm morbidity, and if so, which ones are more likely to contribute to this ailment Previous studies have established that lymphedema, limited range of motion, and arm pain significantly affect the daily lives of survivors Past research has established varying rates of arm morbidity amongst survivors, ranging from 5% to 80% of survivors. Most of this data is based on self-report surveys Involves 547 breast cancer survivors in 4 regions in Canada. Three phases of data collection were used: review of medical chart information, clinical assessment, and administered surveys Demonstrates the impact of arm morbidity on survivors abilities to resume a normal life, of which physical activity is considered to be a key factor Shows that 48.5% of survivors dealing with lymphedema, limited range of motion and arm pain reported having difficulties carrying out activities that require some force or impact, and 29% experienced a negative change in their degree of participation in leisure activities post-surgery Argue that there is a significant, negative relationship between recreation/leisure activities and arm morbidity. Furthermore, in accordance with past research, this study demonstrates that arm morbidity significantly affected survivors abilities to participate in recreation activities 6-12 months after medical interventions Suggest that women engage in activities that will not exacerbate their arm morbidity, but will ameliorate their pain and range of motion restrictions. This type of activity provides important opportunities for physical exercise, health maintenance, social interaction, support and personal meaning Call for a well-designed randomized controlled trial to examine in greater detail the relationships between treatment and arm functioning Physical therapists may benefit from being cognizant of arm morbidity and thus assist breast cancer survivors to ameliorate pain and ROM restrictions Baukje Miedema, Ryan Hamilton, Sue Tatemichi, Roanne Thomas-MacLean, Anna Towers, Thomas F. Hack, Andrea Tilley, Winkle Kwan Predicting recreational difficulties and decreased leisure activities in women 6-12 months post breast cancer surgery. Journal of Cancer Survivorship, 2(4), doi: /s

5 Lymphatic cording or axillary web syndrome after breast cancer surgery Lymphatic cording or axillary web syndrome (AWS) refers to a ropelike structure that develops mainly under the axilla (armpit) but can extend to involve the medial aspect of the ipsilateral arm down to the antecubital fossa (inner-elbow) When untreated, AWS can significantly affect the range of motion (ROM) of breast cancer survivors arms It usually appears after axillary dissection and can develop after a patient s last surgical followup Non-surgical health professionals such as physio and massage therapists often manage patient care relating to AWS Explores the development of AWS in one otherwise healthy 37 year old cancer survivor. She had recently had a lumpectomy, lymph node biopsy, and axillary dissection for breast cancer Displays the quick progression of AWS over a two week period post-operation Illustrates that despite having regained full, pain-free ROM immediately after surgery the survivor began developing lymphatic cording within a week, and within four weeks her ROM was limited by pain and tension with a 1 cm thick ropelike structure visible under the skin Indicate that mobility can become very limited, very rapidly. The survivor considered for this paper had no limits to her ROM immediately after surgery, but within two weeks her shoulder flexion and abduction had reduced to 135 and 123, respectively, and at 4 weeks after surgery, it was just 148 and 145 Suggest that physiotherapy and home exercises may help alleviate some of the discomfort associated AWS, and may also help restore survivors ROM. Over a three week period with 6 visits to a physiotherapist in conjunction with home exercises, the survivor discussed in this paper gradually restored her ROM to 180 flexion and abduction Signify the importance of greater collaboration among surgeons and nonsurgical health professionals to improve education about and treatment of AWS This paper outlines the need for a clear, uniform description of the phenomenon of lymphatic cording/aws, and formulation of a treatment strategy to positively impact the quality of life of breast cancer patients Andrea Tilley, Roanne Thomas-MacLean, Winkle Kwan Lymphatic cording or axillary web syndrome after breast cancer surgery. Canadian Journal of Surgery, 54(4), E

6 Predictors of arm morbidity following breast cancer surgery Arm morbidity post-breast cancer surgery is increasingly being recognized as a chronic problem for some women following breast cancer surgery Lack of standardized and substantiated measures for assessing arm morbidity symptoms may inhibit the response of healthcare professionals The impact of arm morbidity on psychosocial well-being has been well documented, with empirical evidence demonstrating that women who experience arm morbidity report significantly lower quality of life and higher psychological distress Women that undergo an axial lymph node dissection (ALND) are comparatively more prone to arm morbidity than those who undergo a sentinel lymph node biopsy (SLNB) alone Examines the arm morbidity clinical assessments of 316 breast cancer survivors; 78 percent of participants had either SLNB and ALND procedures or ALND procedures alone Demonstrates that range of motion limitations, lymphedema, and reported levels of pain were significantly higher for survivors that had undergone both ALND and SLNB or ALND procedures alone Illustrates that SLNB in the surgical management of axillary lymph nodes is preferable to using more invasive procedures Illuminate the need for accelerated improvement and adoption of SLNB procedures within Canadian institutions to minimize the use of dual procedures. While this practice commonly occurs in the United States, uptake in other countries has been relatively slow Are suggestive of the fact that there may be a negative, cumulative effect of lymph node surgeries on any given patient and that efforts should be made to minimize the use of invasive surgeries Call for efforts to be directed toward developing comprehensive psychosocial and behavioral management and rehabilitation programs for arm morbidity that consider the full scope of symptoms and treatment modalities Acknowledge the importance of addressing longitudinal data to develop these programs while the oncology community simultaneously develops and refines less invasive surgical treatments for breast cancer This publication illustrates the impact that dual procedures have on arm morbidity and also demonstrates the need for comprehensive behavioral management and rehabilitation programs to treat arm morbidity following breast cancer surgery Thomas Hack, Winkle Kwan, Roanne Thomas-MacLean, Anna Towers, Baukje Miedema, Andrea Tilley, and Dan Chateau Predictors of arm morbidity following breast cancer surgery. Psycho-Oncology, 19(11), doi: /pon.1685

7 The impact of breast cancer among Canadian women: Disability and productivity Over 21,000 Canadian women are diagnosed each year with breast cancer, which has survival rates of over 85%. Many breast cancer survivors anticipate being able to participate in the paid labour market for a considerable number of years There are three types of arm morbidity: lymphedema, arm pain, and range of motion limitations Breast cancer associated arm morbidity has an estimated incidence of 30-50%, thus illuminating the need to examine the link between survivorship and productivity, in terms of survivors workrelated decisions and behaviours Loss of productivity is an individual and societal concern Is motivated by the question, what is the impact of arm morbidity associated with cancer treatment on survivors productivity capacity? Analyzes productivity at 6-12 months following breast cancer surgery of women from four distinct Canadian regions Examines individual characteristics including clinical and health factors of breast cancer survivors participating in the labour market at the time of surgery. Clinical variables include arm morbidity, stage of breast cancer, surgery type, and adjuvant treatments. Fatigue, age, and family income are also included as factors Highlight the fact that location carries the strongest association with a loss of productivity, hypothesized to be the outcome of economic and political differences between the four regions Indicate that, collectively, fatigue, range of motion limitations, arm pain, breast cancer stage, and geographic location compose the most parsimonious model of loss of productivity Establish that women with some range of motion limitation and some arm pain are more than twice as likely to lose some productivity capacity compared to their counterparts with no arm morbidity Illuminate the need for sufficient rehabilitation programs to be delivered at crucial times in the breast cancer recovery process Reinforce the importance for the development of regulatory policy, as it moulds decisions and behaviours relating to the labour market made by survivors Elizabeth Quinlan, Roanne Thomas-MacLean, Tom Hack, Winkle Kwan, Baukje Miedema, Sue Tatemichi, Anna Towers, Andrea Tilley The impact of breast cancer among Canadian women: Disability and productivity. Work, 34(3), doi: /wor

8 This is a kind of betrayal : A qualitative study of disability after breast cancer Issues surrounding arm morbidity and disability are sparsely documented, yet women who experience lymphedema indicate that the condition has a major effect on everyday life through pain and range of motion (ROM) restrictions Preliminary findings from a longitudinal study predict that 30% to 50% of women with breast cancer will experience some form of arm morbidity Recent research on breast cancer survivorship has started to acknowledge the long-term social effects of the illness Analyzes the qualitative findings of a longitudinal study examining three types of arm morbidity pain, rom restrictions, and lymphedema in a subsample of 745 Canadian women are reported Demonstrates the impact that these conditions have on the quality of life for breast cancer survivors, significantly affecting their paid work (professional occupations), unpaid work (housework, gardening, etc.), and family relationships (increased reliance on partners, difficulty hugging) Indicate that the social effects of arm morbidity after breast cancer are complex. In particular, survivors experiences in all three categories demonstrate the need for rehabilitation programs Signify that there is a great need for health professionals to assess the effects of disability on the lives of their patients simply by asking questions about paid and unpaid work and relationships with family Acknowledge that future collaboration using a multidisciplinary approach is crucial in order to address arm morbidity and disability after treatment for breast cancer. Juxtaposing social research with medical frameworks for treatment will help to transcend traditional disciplinary boundaries and assist in the development of rehabilitation programs that effectively address cancer-related disability This publication makes significant headway toward developing an intersection of social and medical research in addressing the arm morbidity challenges faced by breast cancer survivors Roanne Thomas-MacLean, Anna Towers, Elizabeth Quinlan, Tom Hack, Winkle Kwan, Baukje Miedema, Paul Graham "This is a kind of betrayal": A qualitative study of disability after breast cancer. Current Oncology, 16(3),

9 Arm morbidity and disability: Reporting the current status from Canada Arm morbidity is lymphedema (swelling), limited range of motion and arm pain occurring after treatment for breast cancer The current literature indicates post-operative lymphedema is under-diagnosed by healthcare professionals, and has previously established that arm lymphedema is often under-recognized by both survivors and health practitioners Previous studies demonstrated that the workplace capabilities of survivors dealing with limited range of motion and arm pain are significantly affected post-surgery Examines 285 post-surgery breast cancer survivors in 4 regions in Canada. The survivors participated in two clinical assessments at 6-12 months and then months after surgery to test for lymphedema and assess their range of motion restrictions and pain Demonstrates that arm problems related to cancer decreased time, but pain and range of motion restrictions remained high Reveals that survivors face long-term, significant restrictions to their everyday life as a result of arm morbidity, pain, and motion restrictions that occur post-surgery Highlight the necessity of proactive inquiry into survivors concerns with pain in order to alleviate future difficulties patients may face with engaging in daily activities. Although many participants reported difficulties conducting daily tasks such as opening tight jars or doing heavy household chores, less than half reported discussing treatment with a physician or oncologist Demonstrate that great significance can be found within simple, low-tech, and cost effective methods in assessing and treating limitations to cancer survivors enjoyment of life post-surgery Call for a continued longitudinal study of post-surgery disability in order to maintain an active search for understanding in this area of research. While an overall improvement in the frequencies of pain and range of motions was reported, the frequencies remained much higher than predicted. This may be alleviated through proactive inquiry by medical practitioners To our knowledge, there are currently few studies specifically addressing arm pain related to breast cancer and its implications for disability Roanne Thomas-Maclean, Paul Spriggs, Elizabeth Quinlan, Anna Towers, Thomas Hack, Sue Tatemichi, Baukje Miedema, Winkle Kwan, Andrea Tilley Arm morbidity and disability in Canada: Reporting the current status from Canada. Journal of Lymphoedema, 5(2),

10 Breast cancer survivorship and work disability Cancer is a condition which has the capacity to sufficiently alter the abilities of victims to the point of disability in terms of functional limitations Disability resulting from breast cancer treatment takes the form of pain, lymphedema (swelling), and restricted range of motion Analyzes prospective, longitudinal, and multisite data in order maintain a methodological approach concurrent with illuminating the association between cancer-related disability and subsequent work-productivity of survivors within the Canadian population with accuracy Demonstrates the ways in which predictors of the loss of productivity of breast cancer survivors alter between 6 to 12 months, 18 to 24 months, and 30 to 36 months post-surgery Involves an initial 372 women over 2.5 years in 4 Canadian regions. The survivors were tested for their range of motion (ROM) impairment, an objective indicator, presented with the McGill Pain questionnaire, a subjective indication of arm disability for measurement purposes during the three time periods post-surgery Shows that the percentage of the participants experiencing fatigue, ROM restrictions, and pain decreases consistently over the three time periods, while the percentage of participants experiencing lymphedema remains statistically the same Reveals that for up to 3 years post-surgery, more than 40% of the participants experience a loss in productivity, be it for the first time from the first or second time period, or continuously from the first time period. Comorbidities and a more advanced stage of breast cancer increase the likelihood of a loss of productivity Reveal that for up to 3 years post-surgery, more than 40% of the participants experience a loss in productivity. Demonstrate that arm pain and/or ROM limitations were meaningful predictors of productivity, but in the long term, fatigue and occupation were not There is a critical need for rehabilitation programming for breast cancer survivors following surgery in order to allow them to resume their previous levels of productivity. However, rehabilitation alone is not sufficient to meet this demand, and must be supplemented with the appropriate social and structural conditions facilitating an accessible position in the paid labour market Elizabeth Quinlan, Roanne MacLean, Thomas Hack, Sue Tatemichi, Anna Towers, Winkle Kwan, Bo Miedema, Andrea Tilley Breast cancer survivorship and work disability. Journal of Disability Policy Studies, 22(1), doi: /

11 Do breast cancer survivors post-surgery difficulties with recreational activities persist over time? Studies show that physical activity improves both mental and physical health amongst breast cancer survivors, yet such engagement can be difficult for a subsample of breast cancer patients A previous study by the same authors revealed that 49% of 547 women in a national longitudinal study of arm morbidity after breast cancer reported difficulty participating in recreational activities 6-12 months post-surgery if free movement of the affected arm was required Aims to determine if temporal changes in arm morbidity (from 8 to 43 months post-surgery) were predictive of difficulties in participating in recreational activities Demonstrates the value of longitudinal methodologies for studies of breast cancer patients, as long-term problems requiring further study may be suffered during remission Analyzes assessments of 178 breast cancer survivors, from four different Canadian geographic regions, at an average of 3.6 year following breast-cancer surgery Reveal that arm morbidity factors (pain, lymphedema, range of motion) are significant predictors of participatory difficulties in recreational activities Reveal that pain, as a unique variable, is a major predictor of recreational difficulty, unlike lymphedema. The pain in question is greatly indiscernible, although tumour size and treatment modalities were not predictive of pain Indicate that while any level lymphedema was not predictive of recreational difficulty in this particular analysis, this may be because improvements in absolute volume measurements may not be sufficient to impact change It is crucial that interventions targeted at pain reduction and the enhancement of the ability to participate in recreational activities are developed in order to establish a positive influence upon a survivor s quality of life during years after the surgery Baukje Miedema, Ryan Hamilton, Sue Tatemichi, Roanne Thomas-MacLean, Thomas F. Hack, Elizabeth Quinlan, Anna Towers, Andrea Tilley, Winkle Kwan Do breast cancer survivors post-surgery difficulties with recreational activities persist over time? Journal of Cancer Survivorship, 5(4), doi: /s x