CHAPTER 2 Lymphedema and Its Impact on Quality of Life
KEY POINTS
All patients undergoing lymph node dissection for any type of solid tumor are at a lifetime risk for the development of secondary lymphedema. These solid tumors include breast cancer, melanoma, gynecologic cancer, genitourinary cancer, and head/neck cancers.
Lymphedema results in negative psychosocial outcomes, poorer physical and mental wellbeing, social isolation, and higher economic burden. Psychological symptom clusters include emotional distress, decreased sleep, negative self-identity and decreased self-confidence, and psychological distress.
Health care providers have long believed that posttreatment late effects of cancer treatment such as lymphedema are to be expected and tolerated; this has led to survivors’ hesitation to share lymphedema concerns with their health care providers.
As cancer detection and treatment advance, a growing number of aging cancer survivors develop posttreatment multifactorial sequelae that require a multidisciplinary approach for rehabilitation and management.
Many survivors are aware of the risk for developing lymphedema after breast cancer treatment. They are hyperaware of engaging in physical activities that may trigger lymphedema or exacerbate existing lymphedema symptoms, which results in feelings of increased frustration and limitation of daily physical activities. This in turn leads to other deleterious survivorship outcomes.
Physical impairments, functional limitations, and symptoms associated with cancer-related lymphedema may be successfully treated using a multidisciplinary approach throughout the survivorship, a period that spans from the time of cancer diagnosis through all years of life. This includes a surveillance model that advocates early assessment and referral for exercise and rehabilitative therapies. Early physiotherapy intervention may reduce the risk of developing lymphedema and of progressive lymphedema. It may also be considered cost effective, because it reduces the economic burden associated with intensive rehabilitation measures and hospitalizations for infection.
Lymphedema teaching strategies should incorporate culturally specific, spiritually based interventions to promote positive worldviews and positive spiritual experiences to enhance perceptions of quality of life. Lymphedema education should focus on the promotion of positive self-efficacy strategies that reinforce a survivor’s ability to control lymphedema through early detection and early referral for rehabilitation.
Lymphedema can arise as a consequence of the treatment of breast cancer and of many other solid tumors, such as melanoma, head and neck cancers, and gynecologic and genitourinary malignancies. 1 A characteristic of all of these malignancies is that they spread to the regional lymph nodes before distant disease dissemination occurs. Treatment for many of these malignancies often includes complete dissection of the involved lymph node basin, which may include axillary, inguinofemoral, or pelvic (iliac/obturator) lymph nodes. Limited research has been dedicated to determining the incidence and impact of lymphedema among survivors of these malignancies. 1
It is well established that symptoms of persistent cancer-related lymphedema result in negative psychosocial outcomes, poorer physical and mental wellbeing, social isolation, and higher economic burden. 2 – 6 In addition, chronic lymphedema symptoms significantly affect the overall health-related quality of life (QOL) of older female survivors. 7 As techniques for cancer detection and treatment improve, a growing population of aging cancer survivors report posttreatmentrelated difficulties that are unique and multifactorial and that therefore require a multidisciplinary approach for rehabilitation and management. 8 , 9
Historically, health care providers have held the view that posttreatment late effects of cancer treatment such as lymphedema are expected and represent minor sequelae that are to be tolerated. Qualitative data suggest that this viewpoint has resulted in survivors’ perceptions that lymphedema symptoms should be disregarded, so these individuals therefore hesitate to share lymphedema concerns with their health care providers. 10 These perceptions and interactions may be some of the reasons that few survivors receive early referrals to rehabilitation programs and consequently do not undergo baseline assessments for the early detection of physical and functional impairment. 10 This chapter will explore the impact of lymphedema on QOL issues, including psychosocial outcomes, functional impairment, and economic burden experienced by cancer survivors with long-term lymphedema.
Incidence of Lymphedema
In developed countries, secondary lymphedema is attributed to traumatic injury to the lymphatic channels associated with surgical interventions for the treatment of cancer. 11 Determining the true prevalence and incidence rates of lymphedema is complicated, because they have been shown to vary according to the treatment received, the anatomic location affected, the methods of lymphedema assessment, the criteria applied, and the duration of followup. 1 Moreover, methods for the global tracking and reporting of lymphedema occurrence are inconsistent, fragmented, and often disease based rather than population based. 12 The diagnosis of lymphedema can be challenging given the multidisciplinary nature of treatment involving different clinicians from the time of diagnosis through the duration of long-term posttreatment follow-up care. 13
Although few data are available regarding lymphedema prevalence rates in developed countries, an exception is a Brazilian study that reported a prevalence rate of 44.8% among breast cancer survivors. 14 The reported incidence of lymphedema among breast cancer survivors in developed countries has been estimated as 28% in Australia, 21% in Jordan, 27% in Turkey, 30% in Great Britain, and 30% to 40% in the United States. 15 – 22 With respect to the lifetime risk for the development of lymphedema, longitudinal data from American breast cancer survivors reveal a reported incidence that varies between 6% and 94% within 5 years after treatment, depending on the methods of measurement and the criteria applied. 23 , 24
All patients who undergo lymph node dissection for any type of solid tumor evaluation are at a lifetime risk for lymphedema. 1 Lymphedema affects survivors of various malignancies, including melanoma (16%), gynecologic cancer (20%), genitourinary cancer (10%), and head/neck cancers (4%). 1 Risk factors for the development of lymphedema include poor general health, advanced breast cancer, and obesity, which are associated with breast cancer–related lymphedema. 13 With respect to obesity, a body mass index (BMI) of more than 30 kg/m2 at the initiation of breast cancer treatment has been shown to be associated with a 3.6-fold increase in the likelihood of developing lymphedema at 6 months compared with survivors with BMIs of less than 30 kg/m2. 13 However, weight gain after breast cancer treatment during the first 30 months of survivorship has not been shown to increase the risk of late-onset lymphedema. 25 Advanced age (older than 80 years) has also been shown to be associated with a lower risk of lymphedema. 7
Assessment of Quality of Life
Health-related QOL is a multidimensional construct that encompasses physical, functional, emotional, and social and family wellbeing. 26 – 29 Physical wellbeing in this context refers to symptoms related to disease (for example, pain, nausea, and fatigue) as well as side effects of treatment. The physical impact of lymphedema is very different among survivors of head/neck cancers. In this patient population, swelling of the head and neck region has significant functional implications, because it may have an impact on the patient’s ability to speak and swallow. In a study of 103 survivors of head/neck cancers, Deng et al 26 reported that external and internal lymphedema also affected patients’ nutritional intake and resulted in weight loss. In addition, internal lymphedema was also linked to self-reported voice-related symptoms.
Functional wellbeing includes an individual’s ability to perform activities of daily living such as walking, bathing, and dressing oneself in addition to societal role performance. Hull 27 noted the effects of lymphedema on survivors’ daily lives, which included the following:
Difficulty sleeping because of positioning of the swollen limb
Difficulty carrying items, such as heavy pots and groceries
Challenges with many forms of exercise, even walking
Problematic fitting and comfort of clothing
Overall, the physical problems associated with lymphedema affect a wide range of daily activities.
Emotional wellbeing is a measure of coping ability, and it reflects the experience of feelings that range from enjoyment to distress, whereas social wellbeing reflects the quality of relationships with family and friends as well as wider social interaction. 28
Health utilities are related to QOL, but they are distinctly different. Health utilities assess the value assigned by populations to specific health states with the use of standardized methods. One of the most commonly used health utilities instruments is the EuroQOL-5D, which uses preference weights from the general population and which can be used to calculate quality-adjusted life-years for cost-effectiveness analyses. 30 , 31 In a study that examined the impact of lymphedema on utility measures, elevated BMI showed a strong association with decreasing utility scores for those with higher stages (stages 2 and 3) of lymphedema. 30
QUALITY OF LIFE INSTRUMENTS
A number of instruments have been used to measure QOL among breast cancer survivors. These include the validated Psychosocial Adjustment to Illness Scale (PAIS), which was used by one study to report a low to moderate relationship between lymphedema symptoms and poor function; however, the use of the PAIS did not demonstrate a correlation between lymphedema and physical, social, vocational, or sexual function measures. 32 , 33
The EuroQOL-5D is a validated QOL tool widely used in Europe and the United States to measure five domains: self-care, mobility, usual activities, pain/discomfort, and anxiety/depression. 30 In a study of 236 patients with lymphedema, many of whom were cancer survivors, lymphedema was found to be associated with lower utility values compared with the values of the general population; adjusted utility scores were lowest in patients with lower extremity lymphedema. 30
The Lymphedema Quality of Life (LYMQOL) questionnaire is a self-report tool intended for use as a standard measure of QOL outcomes among patients with upper and lower limb lymphedema in clinical settings. 34 The LYMQOL was adapted from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 Questions (EORTC QLQ-C30), 35 and it asks 38 questions of patients with upper limb lymphedema and 40 questions of patients with lower limb lymphedema to assess four domains: mood, function, body image/appearance, and symptoms. Although the LYMQOL has demonstrated validity and reliability for all domains (Cronbach’s alpha, >0.8), the tool’s responsiveness over time continues to be evaluated. 36
In a systematic review of 17 QOL instruments, Pusic et al 37 reported that only one study made use of a patientreported outcome instrument, the Upper Limb Lymphedema 27 (ULL-27), which included lymphedema-specific items. 38 The ULL-27 demonstrated strong psychometric properties and content validity for the purposes of lymphedema survivorship research. A study involving the ULL-27 demonstrated improvements in QOL—specifically in the social and emotional wellbeing domains—among survivors engaged in aqua therapy for lymphedema treatment. 38 Generic QOL instruments such as the Medical Outcome Survey Short-Form 36 (SF-36) are not sensitive enough to detect or measure changes related to lymphedema-associated QOL. 37 – 39
In a systematic review of the literature pertaining to QOL among patients with lower limb lymphedema, Cernal et al 40 reported that a deficit exists with regard to the availability of high-quality studies. In this review, it was noted that the majority of studies also did not use validated patientreported outcome instruments specific to assessing lymphedema-associated conditions. Current expert opinion suggests that QOL instruments are inadequate for measuring the specific psychosocial factors associated with lymphedema; specifically, they do not assess the frustration associated with lymphedema management. 37 , 40 , 41 Although a number of objective tools exist, data suggest that subjective tools may be more sensitive for assessing the functional and emotional impairment associated with lymphedema. 42 Therefore QOL instruments specific to lymphedema and psychosocial impairment require further research and development. 37 , 41
In a retrospective trial that assessed the effect of complete decongestive therapy for patients with melanoma and lower extremity lymphedema, patients completed a questionnaire developed by the Italian Lymphedema Association. 43 This instrument addressed the patient’s general medical status as well as patientreported QOL, and it had been validated for patients with melanoma. With the use of this questionnaire, improved QOL was noted as a result of a complete decongestive therapy regimen and an active lifestyle.
Preliminary data from a prospective trial of melanoma patients used the Functional Assessment of Cancer Therapy-Melanoma (FACT-M) questionnaire 44 to evaluate changes in QOL over time in patients with melanoma with or without lymphedema. In this study, lower QOL was associated with lymphedema. 45 In addition, patients with lower extremity melanoma, regardless of lymphedema status, reported lower QOL after surgical treatment compared with patients with upper extremity disease. The FACT is a validated 27-item cancer-specific instrument to which tumor-specific modules can be added for many different types of cancer, including breast, bladder, cervical, endometrial, nasopharyngeal, melanoma, prostate, vulvar, and other solid and nonsolid tumors. 28 , 46 , 47
A study of survivors of head and neck cancers (N = 103), which made use of the head and neck–specific module of the FACT, reported an inverse correlation between lymphedema and functional wellbeing. The investigators noted that the head and neck–specific subscale was sensitive to differences in QOL among those with and without lymphedema. 26
The EORTC also developed and validated a tool to assess the QOL of patients with cancer. 47 , 48 This tool has been used to evaluate survivors of gynecologic cancers, including uterine, ovarian, cervical, and breast. In a study of 263 patients who were stratified by age and evaluated using the disease-specific modules of the EORTC QLQ, women less than 45 years old were more affected by fatigue, lymphedema, poor body image, and impaired sexuality compared with women more than 45 years old. 35 , 49 The EORTC questionnaire was also used in a study of patients with melanoma, which found no differences in overall QOL among patients with lymphedema compared with those without lymphedema. 50 In a study of 63 patients who underwent ilioinguinal lymph node dissection for the treatment of various malignancies such as melanoma, squamous cell carcinoma, and vulvar cancer, the authors reported that QOL among these patients was similar to that of the general population and that lymphedema did not have an impact on overall scores or activities of daily living. 51 These findings suggest that the EORTC questionnaire with disease-specific modules may not be sensitive enough to detect lymphedema-specific issues.
A systematic review of QOL and patientreported outcomes among patients with cancer-related lower extremity lymphedema discussed five different tools used to capture patientreported QOL. 40 Among the instruments identified were those mentioned previously: PAIS, FACT, EORTC, ULL-27, and SF-36.
*References 28 , 32 , 35 , 38 , 39 , 50 .
The SF-36 measures physical functioning as well as mental health constructs. It was also used in a pilot study of weight lifting among patients with lower extremity lymphedema (n = 10), but no significant differences in scores at the beginning of training compared with those obtained after the completion of training were found in this small sample. 52 In another study that used the SF-36 to evaluate the effects of complex decongestive therapy on QOL among 57 survivors of gynecologic cancer, decreased limb volume was associated with statistically significant improvements in QOL. 53The Complex Effects of Lymphedema on Patients’ Well-Being
PSYCHOSOCIAL OUTCOMES
Lymphedema directly affects QOL through a combination of negative psychological and social factors that arise from coping with lymphedema symptoms and the complexities of lymphedema management. 41 Both upper extremity and lower extremity lymphedema symptoms are associated with a psychological symptom cluster that includes emotional distress, decreased sleep, negative self-identity, decreased self-confidence, and psychological distress. 4 , 41 , 54 Lymphedema in the affected hand and limb is associated with high levels of psychosocial distress, and those who have been identified as having lymphedema-associated pain have the highest levels of psychosocial distress. 55 In a study that examined psychosocial distress among those with chronic lymphedema symptoms (stage 2 or 3 lymphedema) compared with those with early or transient lymphedema symptoms (stage 0 or 1 lymphedema), those with transient lymphedema reported greater levels of psychosocial distress. 56
A systematic review of the psychosocial impact of lymphedema found no significant differences in emotional wellbeing and psychological distress among those with and without lymphedema. 41 This suggests that patients accept their lymphedema over time and become better able to cope—or that the tools used are not sensitive to the differences. Qualitative findings from studies identified in the systematic review indicate that people with lymphedema feel negative social effects with respect to work, sexuality, and social engagement.
Psychosocial impairment has been shown to affect breast cancer survivors with lymphedema to a greater extent than survivors without lymphedema with respect to body image, appearance, sexuality, and social isolation. 41 Survivors with lymphedema experience increased feelings of frustration related to a lack of understanding from the public and a lack of consideration within the workplace, which perpetuates feelings of marginalization and social abandonment. 57
Survivors’ perceptions of privacy may potentially be violated as a result of limb swelling, which is a visible indication of prior cancer treatment. 58 Although studies have established that survivors of breast cancer with lymphedema rely on the social support of loved ones for physical assistance and emotional comfort, the culmination of many negative social factors may result in survivors with lymphedema limiting their social exposure, which results in further perceptions of marginalization, social abandonment, social isolation, and decreased sexuality. 9 , 41 , 59
Related posts:
CHAPTER 3 Quality of Life Measurement Instruments
CHAPTER 1 Lymphedema: Lack of Solutions to a Clinical Problem
CHAPTER 16 Lymphedema in Pediatric Patients
CHAPTER 29 Conservative Treatments for Lymphedema
CHAPTER 35 Lymphaticovenular Anastomosis
CHAPTER 43 Lymphedema Complications and Their Treatment
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