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Page 4 of 12 Baker et al. J Cancer Metastasis Treat 2020;6:24 I http://dx.doi.org/10.20517/2394-4722.2020.36

to return for an annual visit. The first enrollment was in October 2014 and the most recent was in May
2019. Survivors could be either self- or provider-referred and did not have to have received treatment at the
host institution. Our study was approved by our institution’s Institutional Review Board (HUM00095825),
and informed consent was obtained from all patients. Patients who did not consent to participate in the
prospective cohort study were not included in this analysis but are still seen in the clinic.

Risk-based survivorship clinic
In the absence of existing clinical guidelines for the care of this population of high-risk survivors of
sarcoma, consultation was sought from nephrology, cardiology, endocrinology, lipidology, psycho-
oncology, physical medicine, and nutrition in development of the clinical protocol with a focus on
laboratory surveillance for the chronic diseases. Biometric and laboratory data were collected to encompass
the conventional cardiovascular risk factors of hypertension and elevated total cholesterol, as established
[27]
by the Framingham Heart Study , obesity and high-sensitivity C-reactive protein hsCRP as found in
[20]
the Reynolds Risk Score , and diabetes as advocated by the ACA/AHA . The Multi-Ethnic Study of
[28]
Atherosclerosis risk calculator includes coronary artery calcium scores, which will be collected going
forward . Importantly, while the Pooled Cohort Equation can calculate a lifetime risk score for persons
[29]
aged 20-59 years, no risk assessment is intended to accurately predict risk in individuals under age 30 and
certainly not with a history of anthracycline chemotherapy and/or chest radiation.

At the enrollment visit and annually thereafter, patients received a comprehensive health examination
with a focus on cardiovascular illness, patient-centered surveillance based on past therapy, family history,
genetic predispositions, lifestyle behaviors, and comorbid health conditions. Patients were assessed for
musculoskeletal dysfunction, metabolic syndrome, diabetes mellitus, hypertension, cardiac diseases,
anxiety/fear disorder, depression, renal insufficiency, and obesity. Treatment history, demographic, family
history, biometric, and patient risk assessment data were also collected at each visit. The patient’s risk
assessment was reviewed with the nurse practitioner, who engaged the patients in education about their
risks and counseled them on lifestyle changes to reduce their risk of chronic illness, such as exercise, weight
reduction, nutrition modification, and mindfulness. Surveillance for disease recurrence was personalized
to the primary sarcoma. Clinic visits averaged 60+ min of face-to-face interaction with the clinician. The
nurse practitioner prepared the initial draft of the survivorship care plan after each annual visit, which was
shared with the patients and their providers. The survivorship care plan included laboratory test results,
imaging studies, treatment history, a cancer screening schedule, medication and vaccination review, and
management plan. About 1.5-2.5 h were spent on pre-visit patient care and after-visit documentation and
in the creation of the survivorship care plan.

Data collection
Patients annually completed a health questionnaire that included family history, fertility, behavior, patient
risk assessment, and patient-reported outcome measures, the results of which would be reported in a
subsequent paper. We used the Patient-Reported Outcomes Measurement Information System (PROMIS),
developed by the National Institute of Health (NIH) to collect PROs using PROMIS Anxiety Short Form
8a v1.0, Depression Short Form 8a v1.0, Sleep Disturbance Short Form 6a v1.0, Pain Interference Ca
Bank v1.1, Physical Function Ca Bank v1.1, and Global Health Scale v1.2. Patients completed the health
questionnaire via an electronic link prior to each clinic visit to support clinical care, and the data were
collected and managed using Research Electronic Data Capture (REDCap) tools hosted at University of
[30]
,
Michigan, a HIPAA-compliant web-based data capture application and database . Biometric data and
imaging were included as standard of care. Laboratory and clinical data were extracted from the patient’s
electronic medical record and entered into the REDCap database.