Assessment tools for the self-reported symptoms of upper limb lymphedema

April 14, 2023

Patients who have upper limb lymphedema (ULL) or are at-risk for the development of ULL may experience multiple symptoms related to edema (i.e., swelling, heaviness, tightness, firmness, and hardness), sensory changes (i.e., pain, tenderness, numbness, aching, tingling, increased arm temperature, burning, and coldness), and functional alterations (i.e., limitations in range of motion, fatigue, difficulty in writing, and swelling after exercise) (1).  A total of 35 subjective symptoms reported by breast cancer survivors were extracted from the included studies in a systematic review conducted by our research group (1).

What did this systematic review add to the current literature?

In this systematic review, important issues are speculated as follows: a) swelling (80%) and heaviness (66%) are the most frequent symptoms in patients with ULL, whereas tenderness (37%) and numbness (27%) are reported more commonly by patients without ULL; b) perceived larger arm size, tightness, and thickness in skin are predictive symptoms for the development of ULL; c) the symptoms of swelling, heaviness, firmness, and tightness are moderately correlated with the presence and/or severity of ULL.


To determine the presence and/or severity of lymphedema and the effectiveness of specific treatments, objective measurements such as volumetric or circumference measurements, bioimpedance spectroscopy, and/or perometry are used. Apart from objective lymphedema measurements, self-reported signs and symptoms are increasingly recognized as an integral part of patient assessments (2). It has been reported that subjective symptoms should be assessed in order to reveal early indicators of ULL and patients’ own feelings regarding the effect of treatments. When compared to the volume difference outcome, these symptoms may be more important for patients, especially those who have a minimal volume difference. In addition, the assessment of subjective symptoms is important to facilitate the timely referral of patients with or at-risk for lymphedema to the physiotherapists who are responsible for the management of lymphedema (1, 3). Patients are often aware of lymphedema through the experience of symptoms such as swelling, heaviness, and/or tightness before it is able to be clinically detected by objective measurements (4).

            According to our systematic review, approximately half of the included studies assessed subjective signs and symptoms of ULL using self-developed questionnaires or questions by the authors (1). On the other hand, there are several questionnaires for the evaluation of self-reported symptoms of ULL. It has been indicated that self-reported signs and symptoms of ULL are evaluated using the Lymphedema and Breast Cancer Questionnaire (LBCQ) (5), the Norman Questionnaire (6), the Breast Cancer and Lymphedema Symptom Experience Index (BCLE-SEI) (7), and the Lymphedema Symptom Intensity and Distress Survey-Arm (8). The characteristics of these self-reported questionnaires in terms of subscales, symptoms, scores, and available languages are summarized in Table 1.

Table 1. Characteristics of self-reported questionnaires for the assessment of subjective symptoms of upper limb lymphedema


Subscales/ number of items or symptoms



Lymphedema and Breast Cancer Questionnaire (LBCQ)

- 19 items

- Symptoms occurrence currently or in the past year (i.e., swelling, heaviness, tightness, aching, numbness, redness, stiffness, tenderness, limited range of motion, weakness) are assessed.

- Yes/no answers for the symptoms

- Demographic items and questions on treatment history, disease course, and symptom management are included.

Total symptom score = 0-38

English (original language), translated in Chinese and Turkish

Norman Questionnaire

- Part A: Symptom of “difference in size”; presence, frequency, degree, and distress of this symptom are rated.

- Part B: 9 symptoms (i.e., puffiness, heavy feeling, tightness, skin indentation, skin texture, pain, hand swelling, difficulty in writing, swelling after exercise) are assessed. The presence, frequency, degree, and distress of these symptoms are scored.

Total symptom score = 0-100

English (original language), translated in Dutch

Breast Cancer and Lymphedema Symptom Experience Index (BCLE-SEI)

- 34 items

- Part I: occurrence and severity of 24 symptoms (i.e., impaired range of motion, swelling, heaviness, firmness, tightness, stiffness, numbness, tenderness, pain, aching, soreness, stiffness, redness, blistering, burning, stabbing, and tingling) are assessed.

- Part II: Symptom distress is defined in 6 dimensions: functional, social, sleep, sexuality, emotional & psychological, and self-perception.

- Total symptom score: 0-96

- Total distress score: 0-224


English (original language), translated in Chinese

Lymphedema Symptom Intensity and Distress Survey-Arm (LSIDS-A)

- 30 symptoms

- 7 subscales: Soft tissue sensation (4 items; i.e., heaviness, tightness, swelling, hardness), neurological sensation (7 items; i.e., stabbing, cramping, pain, numbness, aching, tingling, needling), function (2 items; i.e., arm range of motion), biobehavioral (9 items; i.e., sadness, anger, self-confidence, appearance concerns, fatigue, loss of sleep), resources (2 items; i.e., insurance), sexuality (3 items; i.e., sexual interest, partner interest, sexual activity), and activity (3 items; i.e., hobbies, social activities, physical activities).

-Total symptom score: 0-30

- Intensity score: 0-10

- Distress score: 0-10

English (original language), translated in Turkish


Based on the recent systematic review (9), which investigated the quality of the patient-reported outcome measures based on the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMINE) checklist, the BCLE-SEI had adequate structural validity and very good internal consistency, but its reliability was found to be inadequate, and its criterion and construct validity were categorized as doubtful. In this systematic review (9), the LSIDS-A also has very good internal consistency and adequate convergent validity. However, its reliability was categorized as inadequate.

Furthermore, in another systematic review conducted with the COSMINE framework (11), the BCLE-SEI and LSIDS-A were found not to have sufficient evidence to support their measurement properties. Furthermore, only the responsiveness of the BCLE-SEI has been reported, and it is found to be very low (12).

In conclusion, it has been indicated that these questionnaires are comprehensive, time-efficient, and cost-effective; however, the use of the existing questionnaires is not completely recommended based on the quality of the development phase and the level of validity and reliability. Further evidence is needed for some of the measurement properties, especially the content validity and responsiveness of these questionnaires.


What is the current need?

- Based on the recent systematic reviews and editorial reports (9-11), a patient-reported questionnaire for the assessment of the symptoms of ULL should be developed using the modern validation guidelines and taking high-quality and extensive patient input via open-ended questions.

- The questionnaire can be used to assess comprehensively different domains of lymphedema symptoms. In addition to the presence of the symptoms, the intensity and distress of the symptoms should be assessed as well. A questionnaire should be valid to measure the change of the symptoms over time and to show the effect of treatments on the symptoms.

- When adapting a questionnaire for a non-Western population, researchers should be aware that the definition of sensory symptoms (i.e., tingling and needles) can vary among different cultures.


Thank you so much for reading!

Ceren Gursen



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