Knowledge of patients with sarcoma about their illness—a cross-sectional questionnaire-based study (KNOWSARC)

OBJECTIVE: To explore the knowledge of Indian patients with sarcoma about their illness in the sarcoma medical oncology clinic of a tertiary care centre. METHOD: This prospective cross-sectional questionnaire-based study was done on patients attending the adult sarcoma clinic at the All India Institute of Medical Sciences, New Delhi. Patients aged between 18 and 60 years who gave consent and could understand Hindi or English were recruited for the study. A questionnaire (bilingual – English/Hindi) was given to the patients in the language they understood. The questionnaire captured the knowledge of patients about their illness (cancer/sarcoma), sub-type of sarcoma, the occurrence of the disease (common or rare), origin (bone or soft tissue), metastatic or non-metastatic and the understanding of the possibility of recurrence/progression. RESULT: There were 102 patients in the study with a median age of 31.5 years. About 62% of patients had soft tissue sarcomas, and the rest had bone sarcomas. The most common sarcoma in the studied population was Ewing’s sarcoma (23.5%). Metastatic disease was present in 48 (47.1%) of the total patients studied. About 87.2% of patients were aware that they had some form of cancer, and only 62 (69.9%) patients said that they had sarcoma. Only 55 of the 102 patients (56%) knew that the illness was rare. About 70.6% of patients knew about their disease’s actual stage. More patients with metastatic disease understood the stage correctly (35 of 54 patients) as compared to patients with the non-metastatic disease (37 of 48 patients) (77% versus 64.8%, p = 0.001). About 77% of patients reported the site of origin of cancer correctly. The patients who had a higher level of education and belonged to a higher socioeconomic status had significantly better knowledge regarding the diagnosis, stage, rarity and prognosis of the disease. CONCLUSION: Our patients have poor knowledge about different types of sarcomas, and very few patients know that sarcoma is a rare malignancy. The most crucial factor that influenced the knowledge was the level of education. Through this study, we could identify the sub-group wherein the knowledge gap was significant. Thus, active patient education programmes can help these patients to identify their illness and henceforth therapeutically manage it more wisely.