This Quality of Life Survey Needs Your Voice
As a malignancy that was nearly 100% fatal 20 years ago gradually becomes a "chronic disease," and survival is no longer the primary hurdle, how can patients achieve a higher quality of life and live fully?
July 13 is World GIST Awareness Day. On this day, the "China GIST Patient Quality of Life Survey" was officially launched, jointly initiated by the China Charity Federation's "Love Without Boundaries" GIST Comprehensive Care Community and the GIST Clinical Practice and Innovation Network (CGIN).
This is the first systematic survey in China focusing on the quality of life of GIST patients. It aims to provide reference for standardized clinical diagnosis and treatment, helping patients achieve a high-quality recovery. The survey will explore:
Physical symptoms
Psychological state
Social functioning
Treatment satisfaction
These four dimensions will explore and uncover the most urgent needs of GIST patients, analyzing their current quality of life.
What challenges do GIST patients face?
The name "Gastrointestinal Stromal Tumor" (GIST) is unfamiliar to the general public and even to some patients. China sees about 20,000 to 30,000 new diagnoses annually, with over 100,000 patients currently undergoing treatment. In 2023, GIST was included in the "Second Batch of Rare Diseases Catalog" by six national ministries.
GIST is a type of solid tumor originating from the mesenchymal tissue of the gastrointestinal tract, most common in adults aged 50-70. About one-third of patients show no obvious symptoms in the early stages, often discovering the tumor incidentally during endoscopy or routine check-ups. As the tumor grows and compresses surrounding tissues and organs, some patients may experience abdominal pain, gastrointestinal bleeding, or abdominal masses. Due to its diverse and non-specific clinical manifestations, approximately 20%-30% of patients are already at an advanced stage at their first visit.
Professor Ye Yingjiang, Chairman of the CSCO GIST Committee and Director of the Gastrointestinal Surgery Department at Peking University People's Hospital, has been involved in GIST treatment since 1998 and has witnessed the evolution of its diagnosis and therapy.
At the turn of the century, surgical resection was the only treatment for GIST. However, only a subset of primary tumors could be cured by surgery, and many patients experienced recurrence or passed away shortly after, surviving only a few months. In 2003, the targeted drug imatinib entered China, elevating GIST treatment to a new level. Over the next two decades, targeted therapies like sunitinib, regorafenib, and ripretinib were successively approved. Patients are now living longer, with many surviving with the disease for over 5, 10, or even 20 years.
As GIST transitions from a highly aggressive, chemo- and radio-resistant tumor with a poor prognosis to a manageable chronic condition, patient quality of life has garnered increasing attention.
Surgery remains a primary treatment for GIST, and most patients will undergo it. During the perioperative period, many patients face challenges such as excessive psychological stress, poor wound healing, impaired digestive function, and restricted daily activities, all of which significantly impact their quality of life.
During postoperative recovery, patients may experience anxiety, depression, or even thoughts of abandoning treatment. This can stem from disease progression or poor treatment response. Additionally, adverse reactions to targeted drugs, such as hand-foot syndrome causing severe pain and mobility issues, or hair loss, contribute to emotional distress. Although first- to fourth-line targeted drugs are now covered by medical insurance, low reimbursement rates for some patients still impose a certain financial burden.
Why are patients encouraged to participate in the survey?
Ye Yingjiang
Chairman of the CSCO GIST Committee, Director of Gastrointestinal Surgery, Peking University People's Hospital
"Living long and living well are shared goals for both doctors and patients. GIST is a long-term disease, and during the ongoing battle with the tumor, a patient's quality of life can be affected by multiple factors. Through this survey, we hope to help healthcare professionals better understand patient needs, provide more targeted treatment, nursing care, and health education, and ultimately improve treatment adherence and recovery outcomes."
Li Jian
Chief Physician, Department of Gastrointestinal Medical Oncology, Peking University Cancer Hospital
"Most of our outpatient time is spent discussing treatment plans and managing side effects. We rarely have time to address psychological and emotional changes, or the difficulties patients face when returning to family and social roles. We hope this survey questionnaire will authentically capture the feelings and concerns that are often overlooked or left unspoken during clinic visits."
The "China GIST Patient Quality of Life Survey" is open to all GIST patients. Patients can participate online via the official WeChat account of the China Charity Federation or the "Love Without Boundaries" GIST Comprehensive Care Community.
Scan the QR code below to make your voice heard
Patients can also complete paper questionnaires at GIST clinics in 35 CGIN-affiliated hospitals.
CGIN stands for the GIST Clinical Practice and Innovation Network, covering 35 top-tier (Grade III) hospitals across 21 provinces and municipalities in China that specialize in GIST diagnosis and treatment.
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