Approximately 3190 surveys were disseminated, with 133 surveys initiated. The final sample included 78 surveys for data analysis due to incompleteness (n = 52), less than 5 years of experience (n = 2), and participant from excluded country (n = 1) (supplemental information C). Professions of expert respondents included Physical Therapist (PT) (n = 42), Occupational Therapist (OT) (n = 20), Physician (n = 9), BCRL Researcher (n = 3), Physical Therapist Assistant (n = 2), Advanced Practice Nurse (n = 1), and Massage Therapist (n = 1). Respondents had an average of 26.5 ± 9.69 years (range 7.0–51.0) practicing in their profession and an average of 17.2 ± 7.41 years (range 5.0–42.0) either managing and/or researching BCRL. Of those respondents, 88.5% (n = 69) were CLTs and 79.5% were certified through LANA. Those who were CLTs had retained this credential for an average of 14.4 ± 8.32 years. A majority of the experts described their workload with BCRL was moderate (41–60% of workload) (n = 26) and worked in hospital-based outpatient clinics (n = 51). Respondent and practice characteristics are presented in Table 2.

Second surveys were disseminated via submitted emails (n = 74) and had a response rate of 54% (n = 40) (supplemental information C). Due to incompleteness 7 surveys were removed for a total of 33 surveys available for data analysis which included PT (n = 14), OT (n = 7), Physician (n = 2), BCRL Researcher (n = 2), and Advanced Practice Provider (n = 1) respondents. Respondents had an average of 15.52 ± 7.59 years either managing and/or researching BCRL. A majority of respondents were CLTs (n = 24) and were certified through LANA (n = 19). Further characteristics are presented in Table 2.

ODs to be assessed in a time-constrained clinical and/or research environment to investigate the ICF domain of body function and structures were included if they met the minimum consensus threshold of 70%. Volume was highly recommended for all phases on the continuum of BCRL; pre-surgical (n = 66, 86.8%), post-surgical (n = 72, 96%), subclinical (n = 71, 95.9%), acute (n = 72, 98.6%), and chronic (n = 69, 94.5%). Tissue consistency was highly recommended for the following phases: post-surgical (n = 53, 70.7%), subclinical (n = 62, 83.8%), acute (n = 67, 91.8%), and chronic (n = 68, 93.2%). Pain was a highly recommended OD for the post-surgical phase (n = 55, 73.3%). Highly recommended ODs for body function and structures that met consensus threshold are expanded in Table 3. Moderately recommended ODs included strength for the subclinical (n = 49, 73.1%), acute (n = 50, 73.5%), and chronic (n = 51, 75%) phases.

ODs to be assessed in a time-constrained clinical and/or research environment to investigate the ICF domain of activities and participation were included if they met the minimum consensus threshold of 70%. PR upper quadrant function was highly recommended for all phases; pre-surgical (n = 58, 81.7%), post-surgical (n = 58, 82.9%), subclinical (n = 60, 84.5%), acute (n = 64, 90.1%), and chronic (n = 61, 87.1%). PR HRQOL was recommended for the chronic phase (n = 57, 81.4%), while upper extremity activity and motor control was recommended for the post-surgical phase (n = 50, 71.4%). Highly recommended time-constrained ODs for activities and participation that met consensus threshold are expanded in Table 4. Moderately recommended ODs included mobility and balance for the post-surgical phase (n = 48, 72.7%).

ODs to be assessed in a clinical and/or research environment not constrained by time or resources to investigate the ICF domain of body function and structures were included if they met the minimum consensus threshold of 80%. Comparable to the time-constrained results, ≥ 93% of respondents highly recommended volume for all phases and tissue consistency was highly recommended for all phases except the pre-surgical phase. Joint function was recommended to be measured for pre-surgical (n = 29, 90.6%), post-surgical (n = 28, 87.5%), subclinical (n = 26, 81.3%), acute (n = 27, 84.4%), and chronic (n = 29, 90.6%) phases. Flexibility was recommended for pre-surgical (n = 30, 93.8%), post-surgical (n = 30, 93.8%), subclinical (n = 28, 87.5%), acute (n = 26, 81.3%), and chronic (n = 28, 87.5%) phases. Pain was recommended to be measured for pre-surgical (n = 29, 90.6%), post-surgical (n = 30, 93.8%), subclinical (n = 29, 90.6%), acute (n = 31, 96.9%), and chronic (n = 31, 96.9%) phases. Sensation did not meet the consensus threshold for the subclinical phase (n = 25, 78.1%), and strength did not meet the threshold for subclinical (n = 22, 68.8%), acute (n = 24, 75%), and chronic (n = 25, 78.1%) phases. Recommended ODs to use in a non-constrained work environment for body function and structures that met an 80% consensus threshold are expanded in Fig. 1.

Recommended BCRL outcome domains for non-constrained environments that measure the ICF domain of body structures and functions. BCRL Breast Cancer-Related Lymphedema, ICF International Classification of Disability, Functioning and Health. * Met the minimum consensus threshold of 80%

ODs to be assessed in a clinical and/or research environment not constrained by time or resources to investigate the ICF domain of activities and participation were included if they met the minimum consensus threshold of 80%. PR HRQOL was recommended to be measured for pre-surgical (n = 27, 84.4%), post-surgical (n = 29, 87.9%), subclinical (n = 28, 84.8%), acute (n = 31, 93.9%), and chronic (n = 31, 93.9%) phases. PR upper quadrant function was recommended to be measured for pre-surgical (n = 32, 100%), post-surgical (n = 33, 100%), subclinical (n = 33,100%), acute (n = 32, 97.0%), and chronic (n = 33, 100%) phases. Mobility and balance was recommended to be measured in the pre-surgical (n = 26, 81.3%) and post-surgical (n = 29, 87.9%) phases. Upper extremity activity and motor control was recommended to be assessed in the post-surgical (n = 97.0%), subclinical (n = 29, 87.9%), acute (n = 30, 90.0%), and chronic phases (n = 29, 87.9%). Assessing fatigue was recommended for the post-surgical (n = 30, 90.9%) and chronic phases (n = 28, 84.8%). Recommended ODs to use in a non-constrained work environment for activities and participation that met an 80% consensus threshold are expanded in Fig. 2.

Recommended BCRL outcome domains for non-constrained environments that measure the ICF domain of activities and participation. BCRL Breast Cancer-Related Lymphedema, ICF International Classification of Disability, Functioning and Health, PR Patient-Reported, UE Upper Extremity, AMC Activity and Motor Control, MOB & BAL Mobility and Balance, HRQOL Health-Related Quality of Life, UQF Upper Quadrant Function. * Met the minimum consensus threshold of 80%