The living with leg lymphedema study
Developing a novel model of quality lymphedema care for cancer survivors
By Catharine BowmanThis article is based upon our research publication in the Journal of Cancer Survivorship. Please see the citation at the end of this article to read more.1
Background
As readers of this magazine may know, patients living with cancer-related lymphedema face numerous challenges that can impair quality of life and psychosocial well-being after cancer treatment. These challenges range from physical limitations to financial implications associated with treatment and/or changes to employment with disease progression.2–4
The majority of cancer-related lymphedema literature focuses upon the experiences of patients with upper-extremity lymphedema related to breast cancer treatment. These studies demonstrate the negative physical, emotional, social, familial, and financial impacts of cancer-related lymphedema on patients’ quality of life.4–6 In addition to what we know about breast cancerrelated lymphedema, many patients experiencing lower-extremity cancers are also at an increased risk of lymphedema development after therapy.7–9 Hence, it is critical that the experiences of all cancer patients at an increased risk of developing lymphedema are considered in order to develop care programs that are aimed at improving quality of life and psychosocial well-being across various patient groups. The aim of this study was to integrate the perspective
of patients living with cancer-related leg lymphedema with that of providers of leg lymphedema healthcare to develop a novel model of lymphedema care.
Methods
People living with cancer related leg lymphedema and healthcare providers were both recruited for this study. Patient participants were recruited through provincial oncology centres, the Alberta Lymphedema Association, and electronic medical records. Potential healthcare provider participants were identified through tumour groups at the Tom Baker Cancer Centre. Recruitment was conducted over five months. Our study team implemented both quantitative (questionnaires) and qualitative (interview) methods to explore the perspectives and experiences of leg lymphedema patients and healthcare providers: The quantitative methods included the use of online standardized questionnaires (i.e.
GAD-7/PHQ-8/FACT-G/LYMQOL) to collect data on participants’ demographic and clinical characteristics, as well as validated questionnaires on their quality of life and psychosocial well-being. The validated questionnaires measured leg lymphedemaspecific quality of life, general quality of
Catharine Bowman is a third-year medical student at the University of Calgary. Her research surrounds pharmacology and lymphatic physiology, psychosocial manifestations of lymphatic disease, and surgical treatment of lymphedema. Catharine also volunteers as Vice-President of the Alberta Lymphedema Association.
life, generalized anxiety, and depressive symptoms.10–14
The qualitative data were collected through individual semi-structured interviews with adult patients who had received a formal diagnosis of lymphedema at least one month after completing active cancer treatment and with healthcare providers treating patients with cancer-related leg lymphedema. A collaborative approach was taken to summarize and synthesize the interview data using inductive thematic analysis. A full description of the qualitative analysis methods used can be found in the published paper1
Results
Participant characteristics
Quantitative data were collected from 22 patient participants and semi-structured interviews were undertaken with 19 patients. Semi-structured interviews were conducted with eleven healthcare providers. The mean age of patient participants was 60.1 years. The majority of patients were female (72.7%) with a history of melanoma (41%). Other tumour groups represented include gynecologic (31.8%), prostate (13.6%) and other cancers (41%). Most participants lived in metropolitan areas (72.7%) and had private health insurance (63.6%). The mean age of healthcare provider participants was 50.8 years. Most healthcare providers were male (55%) and worked in the gynecologic cancer group (63.%). The majority of healthcare provider participants were nurses (72.7%) followed by oncologists (27.3%).
The model created for quality lymphedema care based upon the findings from semistructured interviews in this study.1
Major Themes:
Quality of Life and Psychosocial Well-Being: Patients
Through the validated questionnaires, it was identified that our study cohort maintained a similar leg lymphedema-specific quality of life to the overall Canadian lymphedema population. Leg lymphedema was associated with a lower overall quality of life when compared to the general population and to other cancer survivors. It was noted that the level of generalized anxiety within the study group was similar to that of general and cancer survivor populations; however, this cohort had significantly higher depressive symptoms than the general population.
Quantitative outcomes:
Patients & HCPs
1) Lymphedema knowledge
The majority of patient participants described having a well-rounded understanding of lymphedema. Although most participants sourced information independently through online resources, some participants described HCPs as the primary source of their lymphedema education after cancer treatment. Furthermore, the majority of participants described lack of knowledge about the specific mechanisms that contribute to lymphedema progression and its unpredictability as factors
complicating their fears of cancer recurrence and lymphedema exacerbation. As shared within our publication,1 the following quote from a participant represents this concept:
“There is always a doubt… This lymphedema is not going to get better, and most things don’t stay the same. So that, by extension, means you’re probably going to get worse. So what’s that going to mean? Am I going have to start walking with crutches or cane, a walker? Am I going to be in a wheelchair? … Am I going to die from it?” – ID010, Age 79, Male
All healthcare providers were aware of lymphedema and able to describe basic signs/symptoms, screening strategies and referral pathways to support patients at an increased risk for lymphedema in cancer clinics. Despite their awareness, most healthcare providers did not receive formal lymphedema education during their medical training. Rather, lymphedema education was facilitated experientially. The three areas of lymphedema care most commonly identified by healthcare providers as needing improvement were 1) access to treatment, 2) patient resources, and 3) standard screening protocols. The majority of practitioners also identified their desire to receive further lymphedema education.
2) Effectiveness of rehabilitation oncology services for lymphedema management
The majority of patients described the benefits of having access to rehabilitation oncology services for their lymphedema management, teaching, and self-care education. Most participants reported positive interactions with clinic staff, despite challenges associated with wait times and clinical volume. The clinic was most heavily used by participants at the beginning of their lymphedema journeys, as most patients transitioned to self-care management and accessed the clinic for questions, annual appointments, and/or during a flare-up.
Healthcare providers also recognized the importance of lymphedema clinics for long-term management. Some participants discussed their practice of regular screening for lymphedema in post-treatment appointments. Other participants felt screening was not being undertaken enough, leading to lower referral rates to lymphedema clinics in Alberta. Different indications for referral were described by healthcare providers, and the need for a standardized approach was also emphasized.
3) Barriers to lymphedema management
The most common barriers to lymphedema management cited by patients included delayed diagnosis, financial requirements of long-term treatment, and lack of awareness of the provincial lymphedema clinics in Alberta at the time of lymphedema onset. In terms of diagnosis, patients discussed the nature of their diagnosis journeys including meeting with several practitioners before receiving a formal diagnosis.
“The oncologist didn’t know, the vein doctor didn’t know, my GP certainly didn’t know what was going on. Nobody knew… I just wished some of the medical people would have known about it”. – ID007, Age 72, Female
The main barriers to treatment described by healthcare providers included delayed diagnosis, variable timeline to lymphedema onset, a lack of prophylactic referral protocols
and the variability of patient follow-up schedules following cancer treatment. Increasing communication between cancer clinics and lymphedema clinics was identified as an area to improve lymphedema care.
Quality Lymphedema Care Model
The perspectives and themes identified within the study data were combined to create a novel model of quality lymphedema care Figure 1. A full description of this model can be found within our research publication.
Discussion and conclusions
The aim of this study was to explore the quality of life and psychosocial well-being of cancerrelated leg lymphedema patients and to further integrate the perspectives of patients and healthcare providers to create a novel model of quality lymphedema care. The quantitative outcomes indicated that patients in this study maintained a similar lymphedema-specific quality of life to other Canadian lymphedema patients, despite having a lower general quality of life than the general population and
other Canadian lymphedema patients.15–17 Generalized anxiety levels did not differ significantly to published norms for the general public and other cancer survivors.18,19 However, the expression of depressive symptoms was significantly higher in our study cohort when compared to the general population.20 The quantitative data collected in this study did not complement findings from the qualitative interviews. Our hypotheses around this relationship are included in the full text of our research publication.1 However, it is important to note the difference between qualitative and quantitative findings emphasize a need for increased research in this area.
Three primary themes were identified from the interviews with patient and healthcare practitioners. These themes were then used to create branches of the novel model of lymphedema care shown in this article. The model emphasizes the need for a multifactorial approach to care, including the need for healthcare provider education, consistent screening and diagnosis, resource awareness for patients, clinical referrals and accessibility
of clinical resources, as well as the need for continuity of care and psychosocial support for patients over time. Ultimately, the factors presented within this care model must be considered as we aim to optimize lymphedema care within Canada and globally. Findings from this study have revealed opportunities for future studies that include the implementation of this model of care, optimization of healthcare provider lymphedema education, as well as the unique interplay between patients’ quality of life and coping mechanisms to address the chronic nature of lymphedema. LP
A full set of references can be found at www.lymphedemapathways.ca
Publication Citation
Bowman, C., Oberoi, D., Radke, L., Francis, G J., Carlson, L. Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors. J Cancer Surviv 15, 140–150 (2021). https://doi.org/10.1007/ s11764-020-00919-2.
