THE JOURNEY TO DIAGNOSIS AND LIVED EXPERIENCE OF PATIENTS WITH LOW-GRADE GLIOMA: A QUALITATIVE STUDY FROM GREECE
Author(s)
Eleftheria Karampli, PhD1, George Koulierakis, PhD2, Nikolaos Vrontaras, MSc, PhD(c)1, Panagiota Naoum, PhD1, Vasilis Ramfidis, MD, MSc3, Ippokratis Korantzis, MD, MSc, PhD, MRCP (UK)4, GEORGE PISSAKAS, MD, PhD5, Evangelia Razis, MD, PhD, FASCO6, Elpida Pavi, PhD1, Kostas Athanasakis, PhD1.
1Laboratory for Health Technology Assessment (LabHTA), Department of Public Health Policy, School of Public Health, University of West Attica, Athens, Greece, 2Laboratory of Epidemiology, Health Determinants and Well-Being – EpiHDW, Department of Public Health Policy, University of West Attica, Athens, Greece, 3Oncology Unit, 251 Hellenic Air Force General Hospital, Athens, Greece, 4Medical Oncology Department, St Luke's Hospital, Thessaloniki, Greece, 5Department of Radiotherapy, Alexandra Hospital, Athens, Greece, 63rd Department of Oncology, Hygeia Hospital, Marousi, Greece.
1Laboratory for Health Technology Assessment (LabHTA), Department of Public Health Policy, School of Public Health, University of West Attica, Athens, Greece, 2Laboratory of Epidemiology, Health Determinants and Well-Being – EpiHDW, Department of Public Health Policy, University of West Attica, Athens, Greece, 3Oncology Unit, 251 Hellenic Air Force General Hospital, Athens, Greece, 4Medical Oncology Department, St Luke's Hospital, Thessaloniki, Greece, 5Department of Radiotherapy, Alexandra Hospital, Athens, Greece, 63rd Department of Oncology, Hygeia Hospital, Marousi, Greece.
OBJECTIVES: Patients with low grade gliomas (LGGs) often face challenges in obtaining a diagnosis as well as disparities in access to specialized healthcare. In addition, they report impaired health-related quality-of-life (HRQoL). The study aimed to describe the pathway to diagnosis and treatment of adults with LGGs within the Greek healthcare system and to explore their experiences of living with the disease.
METHODS: Participants were recruited from four public and private hospital clinics/departments in the two largest Greek cities. Eligible patients were informed about the study by their treating physicians; semi-structured interviews were conducted with consenting patients. Interviews were audio-recorded, pseudonymized, and transcribed verbatim. Transcripts were analyzed by three researchers using thematic analysis with deductive and inductive coding. Ethical approval was obtained from participating hospitals’ Scientific Boards and the University of West Attica’s Ethics Committee.
RESULTS: Seven patients (three women and four men) (mean age 41.3 years) participated. Mean interview duration was 70 minutes. Thematic analysis generated six themes: the journey to diagnosis; treatment; ways of coping with the disease; impact of illness on life; life beyond diagnosis and treatment; relationship with healthcare professionals and the healthcare system. Patients described diverse pathways to diagnosis, ranging from prompt symptom recognition to misdiagnosis. The perioperative and postoperative periods were associated with emotional strain and psychological adjustment challenges. Disease and treatment affected physical health (including cognitive deficits and epileptic seizures), and necessitated adjustments to daily and professional life. While some participants maintained relatively stable employment, others required work adjustment or temporary cessation. Financial burden constituted a significant concern for some patients. Communication and relationships with physicians strongly influenced trust, adherence and overall satisfaction with care.
CONCLUSIONS: Findings highlight supportive care needs of patients with LGGs and underscore the importance of timely diagnosis, optimized referral pathways, multidisciplinary care, and patient-centered information and care delivery.
METHODS: Participants were recruited from four public and private hospital clinics/departments in the two largest Greek cities. Eligible patients were informed about the study by their treating physicians; semi-structured interviews were conducted with consenting patients. Interviews were audio-recorded, pseudonymized, and transcribed verbatim. Transcripts were analyzed by three researchers using thematic analysis with deductive and inductive coding. Ethical approval was obtained from participating hospitals’ Scientific Boards and the University of West Attica’s Ethics Committee.
RESULTS: Seven patients (three women and four men) (mean age 41.3 years) participated. Mean interview duration was 70 minutes. Thematic analysis generated six themes: the journey to diagnosis; treatment; ways of coping with the disease; impact of illness on life; life beyond diagnosis and treatment; relationship with healthcare professionals and the healthcare system. Patients described diverse pathways to diagnosis, ranging from prompt symptom recognition to misdiagnosis. The perioperative and postoperative periods were associated with emotional strain and psychological adjustment challenges. Disease and treatment affected physical health (including cognitive deficits and epileptic seizures), and necessitated adjustments to daily and professional life. While some participants maintained relatively stable employment, others required work adjustment or temporary cessation. Financial burden constituted a significant concern for some patients. Communication and relationships with physicians strongly influenced trust, adherence and overall satisfaction with care.
CONCLUSIONS: Findings highlight supportive care needs of patients with LGGs and underscore the importance of timely diagnosis, optimized referral pathways, multidisciplinary care, and patient-centered information and care delivery.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
HSD40
Topic
Health Service Delivery & Process of Care, Patient-Centered Research
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Oncology