Table 4.

Subjects for research, advocacy, and information

Subjects for research (R)
1	What are causes of sarcoma?
2	Are preventative measures possible? Can vaccines be developed?
3	Research into hereditary aspects of sarcoma.
4	More research on all subtypes of sarcoma •Specifically mentioned: GIST, retroperitoneal liposarcoma, angiosarcoma, TGCT •Role of hormones in desmoid tumors
5	Research the effect of personal characteristics: what have survivors in common?
6	Research better diagnostic techniques (imaging, blood tests, scans, innovative image analysis techniques, whole gene sequencing) and research how to better distinguish between subtypes and benign and malignant tumors.
7	What percentage of diagnosis is wrong?
8	What is the risk of taking biopsies?
9	Research into innovative treatment: immunotherapy, targeted therapy, and combined therapies.
10	Research more options for treatment; compare their effectiveness (e.g. perfusion versus amputation); and pay more attention to quality of life (balancing of overall survival and quality of life).
11	Research into methods for precision surgery. What is the effect of surgical margins on prognosis?
12	Research on effects of lifestyle, diet, mental condition (integrative health care).
13	Research on all kinds of side-effects (pain, side-effects of TKIs, chemotherapy, radiotherapy, surgery, etc.) and treatments thereof.
14	Research coping strategies for side-effects.
15	Research long-term effects of treatment on fertility, intimacy.
16	Research for better estimation of prognosis and risk.
17	Research personalized, risk-based follow-up schemes.
18	What is the effect of mental condition on the result of the treatment?
19	Research on treatment methods (e.g. psychotherapy, mindfulness, psychedelics) for disease-related mental suffering (e.g. acceptance, anxiety).
20	Research on the re-integration of sarcoma survivors.
21	How is end-of-life care organized in different countries?
22	What is happening in the terminal phase (development of the disease and best supportive care)?
23	Research shared decision making in final phase: what is role of carers?

Subjects for advocacy (A)
1	The diagnostic process must be improved through better education and development of tools (artificial intelligence) that can assist GPs in recognizing the possibility of a sarcoma.
2	A better classification is needed for benign and malignant tumors and benign tumors should be included in registries.
3	Mutational analysis of the tumor should be available for all patients.
4	Data sharing should be improved; all relevant data of a patient should be available across medical institutions.
5	An international registry is needed to supply with data for research and stimulate international research collaboration.
6	International registry for research and the use of big data analysis.
7	Communication between specialists and patient must be improved to stimulate shared decision making.
8	A single point of contact must be provided to patients (e.g. case manager, specialized nurse).
9	Information on all tumor subtypes must be available for patients.
10	Sarcoma centers should advise patients on complementary treatments, lifestyle, and diet.
11	Ample attention should be given to quality of life and consequences of treatment (e.g. pain, temporary/permanent effects of surgery, side-effects of medication) during the shared decision-making process.
12	Mental support must be available for sarcoma patients.
13	End-of-life scenario should be discussed openly and timely with the patient.
14	Referral of patients to sarcoma expert centers, centralization, networks.
15	The availability to patients of off-label or compassionate use medication.

Information requests (I)
1	What are causes of sarcoma?
2	What do survivors have in common?
3	What are symptoms that can alert patients?
4	Is it possible to screen people for sarcoma?
5	Can sarcoma be prevented? What have I done myself?
6	What methods are available for detecting sarcoma? What are differences between diagnostic methods?
7	Request for information about trials.
8	Information about treatment options, including success rate, side-effects, quality of life, long-term effects.
9	What are consequences of the disease and treatment on mental health?
10	More information on successive treatment options after first-line treatment.
11	Information about alternative treatment (including integral medicine) in case medical treatment fails.
12	More information on prognosis.
13	When can I be considered cured?
14	Which is the best place for sarcoma treatment? Request for more information about expert centers (also internationally).
15	Can I be treated in a center abroad? Information about insurance coverage for sarcoma treatment abroad.
16	Which medical professional is responsible for me?
17	Information on all aspects of end of life, both for patients and carers.

GIST, gastrointestinal stromal tumor; GP, general practitioner; TGCT, tenosynovial giant cell tumor; TKI, tyrosine kinase inhibitor.