Introduction

Lymphedema continues to be a significant health issue for cancer survivors, demonstrated in the 2006 and 2010 Livestrong cancer survivor surveys. Among the 6593 survivors of various types of cancer who completed the questionnaires, lymphedema was the sixth most frequently reported physical issue; lymphedema was of increasing concern for 21% of respondents in 2006 and for 25% of respondents in 2010. Of the respondents, 53% had their cancer treated with surgery or radiation, with or without adjuvant systemic therapy. Recent Livestrong surveys in 2012, 2014, and 2015 have focused on additional concerns for persons living with lymphedema, such as survivorship care plans and financial and return to work issues.

Standard-of-care lymphedema treatment is a management-based program providing symptomatic relief but requiring lifelong compression, self-massage, and, in some cases, regular visits to a lymphedema therapist for bandaging, education, and manual lymphatic drainage. Although some surgical management techniques offer patients an opportunity to forgo lifelong treatment and, in some cases, to forgo ongoing compression, little evidence exists for the long-term efficacy of these relatively novel procedures (see Chapter 26 for discussion of lymphedema surgical management techniques).

Because quality of life (QOL) outcomes have become a subject of increasing focus as primary or secondary outcomes in most clinical trials, a variety of general, malignancy-specific, and symptom-specific self-report instruments have been developed and used to assess QOL and symptoms in patients who have or are at risk for lymphedema. This chapter will provide an overview of the published evidence for the nonsurgical treatment of lymphedema, the assessment of patient-centered outcomes, and specific QOL and symptom assessment tools that have been used to evaluate patients with lymphedema.

Nonsurgical Treatment of Lymphedema

The traditional, gold standard treatment for lymphedema remains complete decongestive therapy (CDT). In the treatment phase of CDT, trained lymphedema therapists apply multiple modalities, including manual lymph drainage, multilayer short-stretch compression bandaging, therapeutic exercises, skin care, elastic compression, and education in self-maintenance. After the treatment phase, which usually lasts 3–8 weeks, the patient is expected to continue into the maintenance phase, which includes self-administered lymphatic drainage, exercise, skin care, and compression garments.

A recent systematic review by Lasinski et al. includes 8 randomized controlled trials and 10 prospective cohort studies that examined the outcomes associated with CDT ( Table 25.1 ). The authors concluded that the reviewed studies were moderately strong but lacked consistent, objectively collected data and that several of the studies describing consistent interventions often bundled CDT with other interventions. Findings from these data indicate that CDT is effective in reducing limb volume. Bundling treatment modalities makes it difficult to determine the overall efficacy of a single component of the CDT treatment schema; however, findings from these studies indicate that CDT is effective in reducing limb volume.

Other nonsurgical treatments can be considered for treatment of lymphedema. A systematic review of complementary, alternative, and other non-CDT lymphedema treatments found that treatments like these were widespread but poorly supported by evidence. In this review, the lymphedema therapies were categorized as either physical agents or modalities of contemporary value. The physical agent modalities included ultrasound therapy, electrically stimulated lymphatic drainage, high-voltage electrical stimulation, diathermy, low-level laser therapy, hyperbaric oxygen therapy, elastic taping, and acupuncture. Among the modalities of contemporary value were internationally designed at-home units devised to complete manual lymph drainage through circular massage motions, aqualymphatic therapy, and extracorporeal shockwave therapy. Most of these studies were completed with a small convenience sample or a case series and have not been replicated. Also, very few of these studies used completely objective measures of limb volume reduction, such as circumference, perometry, water displacement, or bioimpedance; subjective measures including symptom assessment and clinical examination were used to identify the pre- and post-treatment changes, which limit the validity of the data.

Patient-Centered Appraisal

The evaluation of patient-centered outcomes is important in identifying treatment-associated objective and subjective outcomes and can be defined using various tools—most commonly, QOL instruments, symptom assessment tools, measures of functional status, and global well-being health ratings. The World Health Organization clarifies that health-related QOL is not only the absence of illness but also broader well-being in the physical, social, and mental domains. Subjective outcome appraisal is a critical component of outcome assessment for any treatment regimen. Thus, the objective appraisal of lymphedema should not exclusively evaluate reduction in limb volume. Indeed, most patients with lymphedema have complaints related to body image, psychosocial barriers, and emotional issues.

The most effective way to capture changes in these patient-centered outcomes is a prospective, longitudinal assessment that collects information at baseline (prior to the intervention), at time points throughout the intervention, and within the maintenance phase following treatment. However, in the absence of longitudinal data, cross-sectional data can provide important insights on the effect of lymphedema treatment on overall QOL.

Some challenges in the evaluation of subjective, patient-reported QOL outcomes are often-observed ceiling effects, in which scores naturally cluster toward the top of the spectrum of outcomes. This may indicate that the tool being used lacks sensitivity to capture the magnitudes of outcome changes, which can result in reporting of limited changes with unclear clinical significance. Therefore, studies that define minimally important clinical differences in outcome measures within a population allow clinicians to interpret important, albeit often modest, changes in subjective outcomes over time. Conversely, subtle differences in scores may indicate important changes in these outcomes and should not be neglected. In an oncologic setting, a contemporary evaluation of health-related QOL takes continuous score distributions and categorizes them according to the extent of the changes in those scores. Despite the challenges capturing true outcomes over time in the evaluation of patient-reported outcomes, these data provide insight that cannot be gained from objective assessments alone.

Quality of Life

Validated Instruments

General QOL and Health Utility Tools Utilized in Lymphedema Outcome Evaluations ( Tables 25.2–25.4 )

Short Form-36 Health Survey (SF-36) from the RAND Medical Outcomes Study

The SF-36 measures physical functioning and mental health constructs in eight domains, including vitality and mental and physical function (see Table 25.2 ). The SF-36 has been used in a pilot study of the effect of weight-lifting on lower extremity lymphedema (n=10), with no significant change between beginning of weight-lifting training and completion of training. The SF-36 was used in another study to assess QOL in 60 breast cancer survivors with lymphedema. QOL was measured before and after liposuction at 1, 3, 6, and 12 months; QOL measured with the SF-36 improved in patients after combined liposuction and controlled compression therapy.

Table 25.2

Overview of Assessed Questionnaires, With Validation.

Reprinted with permission from Cornelissen AJM, Kool M, Keuter XHA, et al. Quality of life questionnaires in breast cancer-related lymphedema patients: review of the literature. Lymph Res Biol. 2018;16(2):134–139, Table 1.

Questionnaire (Abbreviation)	Questionnaire (Full Name)	No. of Studies	Validation Author(s) Year	Consistency Validity (n)	Cronbach’s α Coefficients
Group 1
SF-36	Short Form 36	12	Brazier et al. 1992	1582	0.73–0.96
DASH	Disabilities of Arm, Shoulder, and Hand	4	Dias et al. 2008	100	0.98
HADS	Hospital Anxiety and Depression Scale	1	Bjelland et al. 2002	Review	0.67–0.93
McGill Pain score	McGill Pain score	1	Melzack 1987	16	0.74–1.00
MYMOP	Measure Yourself Medical Outcome Profile	1	Barbosa Lima et al. 2016	74	0.38–0.62
PANAS	Positive and Negative Affect Schedule	1	Watson et al. 1988	Unknown	0.86–0.90
Group II
EORTC QLQ-C30	Quality of Life Questionnaire Core-30	12	Tan et al. 2014	170	0.85
EORTC QLQ-BR23	Quality of Life Questionnaire Breast-23	11	Sprangers et al. 1996	170	0.57–0.89
FACT-B	Functional Assessment of Cancer Therapy Breast Cancer	11	Coster et al. 2001	279	0.62–0.88
Group III
Lymph-ICF	Lymphedema Functioning, Disability, and Health	5	Devoogdt et al. 2011	60	>0.70
ULL 27	Upper Limb Lymphedema 27	3	Launois et al. 2002	301	0.82–0.93
LSIDS-A	Lymphedema Symptom and Intensity Survey–Arm	1	Ridner & Dietrich 2015	236	0.93–0.94
LyQLI	Lymphedema Quality of Life Inventory	2	Klernäs et al. 2015	126	0.87–0.92
PBI-L	Patient Benefit Index–Lymphedema	1	Blome et al. 2014	65	0.80–1.00
LYMQOL	Quality of Life Measure for Limb Lymphedema	1	Keeley et al. 2010	209	0.83–0.88

 

Table 25.3

Overview of Assessed Quality of Life Domains in the Different Questionnaires.

Reprinted with permission from Cornelissen AJM, Kool M, Keuter XHA, et al. Quality of life questionnaires in breast cancer-related lymphedema patients: review of the literature. Lymph Res Biol . 2018;16(2):134–139, Table 25.2 .

Questionnaire a	Answer Type	Physical Function	Mental Function	Daily Activities	Hobbies and Jobs	Mobility	Social Activities	Sexual Function
Group I
SF-36	Categories	×	×	×	–	–	×	–
DASH	Categories	×	×	×	×	×	×	×
HADS	Categories	–	×	–	–	–	–	–
McGill Pain score	Categories—VAS	×	×	×	–	–	–	–
MYMOP	Categories	×	×	×	–	–	–	–
PANAS	Categories	–	×	–	–	–	–	–
Group II
EORTC QLQ-C30	Categories	×	×	×	×	×	×	–
EORTC QLQ-BR23	Categories	×	×	–	–	–	–	×
FACT-B	Categories	×	×	–	×	–	×	×
Group III
Lymph-ICF	VAS	×	×	×	×	×	×	–
ULL 27	Categories	×	×	×	×	×	×	–
LSIDS-A	Categories	×	×	×	×	×	×	×
LyQLI	Categories	×	×	×	×	×	×	×
PBI-L	Categories	×	×	×	×	×	×	–
LYMQOL	Categories	×	×	×	×	×	×	–

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