gms | German Medical Science

Introduction: Sarcomas challenge research and clinical routine standards because of the complex treatment intervention required and the treatment associated burden. Patients report severe limitations in quality of life and currently there is a lack of an interdisciplinary nationwide network for the care of patients. We track the current sarcoma care and the situation of sarcoma patients in a threefold approach. This is the first study of its kind in Germany.

Methods:

1.

Nationwide prospective cohort study. Approximately 1200 patients with incident or prevalent sarcoma, of whom 400 can be considered in palliative state, will be included in approximately 100 recruitment centers. Data will be collected at 3 time points over a year between 09/2017 and 12/2019. We will collect individual and structural clinical data and patient reported outcomes (PRO) via standardized and self-developed questionnaires. Study data will be collected and managed using REDCap electronic data capture tools.

2.

Cross-Sectional Online Survey. Via their medical society we invited clinicians involved in treatment and diagnosis of sarcoma patients, i.e surgeons, pathologists, orthopedists, gynecologists, haematooncologists, radiation therapists and radiologists to take part. Invitations were sent by e-mail or newsletter.

3.

Secondary data analysis of a cohort of all sarcoma patients of a big German statutory health insurance in 2008-2014. Endpoints of this analysis are the incidence, prevalence, survival rate, distant metastasis rate, and utilization of diagnostic and therapeutic healthcare.

Results/Aims:

1.

Results are expected in Q4 2019. Descriptive measures will include socio-demographic data, diagnose and treatment. PRO’s will include quality of life, psychological distress, pain, satisfaction with treatment, lifestyle and functional assessments. Data on general clinical level will include usage of tumor board, number of patients treated and treatment options. We aim to assess potential influential factors on PRO’s. Until March 2017, 300 Patients in approximately 50 study sites were included.

2.

Preliminary Results. Until January 2017 212 clinicians and resident doctors participated in the survey. The biggest groups were haematologists/oncologists (46%) and (plastic) surgeons (30%). 38% worked in hospitals with maximum care, 34% in medical practices. Nearly 50% treated less than 10 patients per year, 12% more than 100. Access problems to treatment and diagnosis options were reported with regard to ILP (39%), hyperthermia (33%) and PET (27%). 42% reported no access problems. A third of the participants did not cooperate with so called sarcoma centers, 92% used interdisciplinary tumor boards.

3.

Results are expected in Q1 2019.

Conclusions: Detailed information on QoL, care pathways, quality of care and collaboration between disciplines will help to optimize healthcare service for adult sarcoma patients. Knowledge on the patient’s perspectives will contribute to focus translational research on outcomes which are relevant to the patients. The establishment of an interdisciplinary sarcoma network can help to create generally accepted healthcare services.