Life in the Shadows of Glioblastoma: Health-related quality of life, psychological symptoms, life situation and support

Abstract

Glioblastoma is a life limiting illness characterised by numerous distressing and progressively worsening symptoms. The patient suffers and so do those closest to them, their relatives. Throughout the course of the disease, care and support are essential. While this need is well recognised, less is known about how the interconnected health-related quality of life, psychological symptoms, and overall life situation within close relationships is affected, what types of support are desired, what kind of support have been tested, and which outcomes have been evaluated. Studies I and II employed a quantitative design. Patients with glioblastoma completed the Short Form Health Survey (SF-36) and The Hospital Anxiety and Depression Scale (HADS) questionnaires pre-surgery (Study I) and longitudinally (Study II), from the pre-surgery phase up to two years post -surgery. The results indicate significant impact on both patients and their relatives, with particularly pronounced symptoms of anxiety reported among the relatives. Study III had a qualitative design and investigated the life situations and support needs of patients with glioblastoma and their relatives. The findings illustrate a changed life situation, including altered family relations, social disconnection and an uncertainty about the time to come. The participants described the value of holding onto what felt most meaningful, setting short-range objectives, and relying on support from relatives, friends, and healthcare professionals. Participants expressed a desire for timely, concrete, and accessible support, as well as emotional and existential care. Clear communication and more responsive feedback were also seen as crucial. In Study IV, a scoping review was to identify existing support interventions for patients with high-grade gliomas and/or their relatives. The interventions demonstrated positive effects, such as improvements in symptoms, psychosocial health, hope, quality of life (QoL), preparedness, and reduced hospital readmissions, along with decreased levels of depression and anxiety. Despite these promising findings, many interventions remain in the early stages of development and implementation. In summary, this thesis illustrates that glioblastoma affects not only the patient, but also their close relationships, highlighting a shared burden that calls for a coordinated care response. The findings underpin the need for support in the physical, emotional, spiritual/existential, and social dimension, that is tailored over time and directed at both patients and their relatives. While promising interventions exist, they require further development, evaluation, and integration into clinical practice. To meet the complex needs posed by glioblastoma, care must be individualised, relational, and firmly embedded throughout the care trajectory, including early palliative care.