TABLE 1.

Characteristics of lymphedema-specific PROMs

PROM (first article)	Target population	No. of items	Subscales	Response options	Scoring	Original language	Available translations
BCLE-SEI (Fu et al.,2012)55	Patients with breast cancer-related lymphedema	34	Symptoms, Distress	Yes/no questions, 5-point scale	Symptom score, distress score	English	Chinese
FLQA-I (Augustin et al., 2005)22	Patients with all forms of lymphedema	92	Physical Complaints, Everyday Life, Social Life, Emotional Status, Treatment, Satisfaction, Profession/Household	Unknown	Unknown	German
FLQA-LS (Augustin et al., 2018)37	Patients with all forms of lymphedema	33	Physical Impairments, Daily Life, Social Life, Psychological Well-Being, Therapy of the Lymph Condition, Global Assessment	5-point scale, 11-point visual analog scale	Unknown	German	English
LLIS (Weiss and Daniel, 2015)28	Patients with any extremity lymphedema	18	Physical, Psychosocial, Functional	5-point scale	Total score, subscale score	English
LLIS 2.0 (Weiss and Daniel, 2018)23	Patients with any extremity lymphedema	18	Physical, Psychosocial, Functional, Infection Occurrence	5-point scale	Total score, subscale score	English
LSIDS-A (Ridner and Dietrich, 2015)29	Patients with upper extremity lymphedema	30	Soft Tissue Sensation, Neurologic Sensation, Function, Biobehavioral, Resource, Sexuality, Activity	Yes/no questions, 10-point scale	Total score, subscale score, intensity and distress scores	English
LSIDS-H&N (Deng et al., 2012)30	Patients with head and neck cancer-related lymphedema	67	Altered Sensations, General Psychosocial Issues, Functional Impairments and Symptom Burden, Anatomical Sites of Swelling	Yes/no questions, 10-point scale, 11-point scale	Unknown	English
LSIDS-L (Ridner et al., 2018)35	Patients with lower extremity lymphedema	31	Activity, Soft Tissue Sensation, Pain, Resources, Biobehavioral, Neurologic Sensation, Function, Sexuality	Yes/no questions, 5-point scale	Total score, subscale score	English
Lymph-ICF (Devoogdt et al., 2011)31	Patients with breast cancer-related lymphedema	29	Physical Function, Mental Function, Household Activities, Mobility Activities, Life and Social Activities	Visual analog scale	Total score, subscale score	Dutch	English, Turkish, Danish
Lymph-ICF-UL (De Vrieze et al., 2019)27	Patients with upper extremity lymphedema	29	Physical Function, Mental Function, Household Activities, Mobility Activities, Life and Social Activities	11-point scale	Total score, subscale score	Dutch	English, French
Lymph-ICF-LL (Devoogdt et al., 2014)32	Patients with lower extremity lymphedema	28	Physical Function, Mental Function, General Tasks/Household Activities, Mobility Activities, Life Domains/Social Life	11-point scale	Total score, subscale score	Dutch	English, Turkish, Portuguese
LYMQOL (Keeley et al., 2010)33	Patients with any extremity lymphedema	Arm: 28 Leg: 27	Function, Appearance, Symptoms, Mood, Overall QoL	4-point scale, 11-point scale, open question	Total score, subscale score	English	Dutch, Turkish
LyQLI (Klernäs et al., 2015)38	Patients with all forms of lymphedema	45	Physical, Psychosocial, Practical, General HRQoL	4-point scale, yes/no question	Subscale score	Swedish	English
S)LQOLI (Klernas et al., 2010)25	Patients with all forms of lymphedema	58	Physical, Emotional, Social, Practical, General QoL	point scale, 11-point scale	Unknown	English (LQOLI), Swedish (SLQOLI)
PBI-L (Blome et al., 2014)24	Patients with lymphedema and/or lipedema	46	Patient Needs, Patient Benefit	5-point scale	Total score	German	English, Turkish
ULL-27 (Launois and Alliot, 2000)34	Patients with breast cancer-related lymphedema	27	Physical, Psychological, Social	5-point scale	Total score, subscale score	French	Dutch
ULLQoL (Williams et al., 2018)26	Patients with breast cancer-related lymphedema	14	Physical Well-Being, Emotional Well-Being	5-point scale	Total score, subscale score	English

PROM patient-reported outcome measure, LQOLI Lymphedema Quality of Life Inventory, SLQOLI Swedish version of the Lymphedema Quality of Life Inventory, QoL quality of life