Symptom-based interventions to promote quality survivorship

Abstract

Survival alone is no longer an adequate outcome for persons with brain tumors; the quality of the survivorship experience should be viewed with equal importance. Symptom management is a significant component of quality survivorship care. Regardless of their histology, brain tumors and therapies used to treat them produce symptoms that affect an individual's ability to function in everyday life. Common symptoms include fatigue, cognitive impairment, distress, and sleep disturbance. Symptom-based interventions for persons with brain tumors focus on prevention, self-management, and prescriptive interventions targeted to these problems. Unfortunately, little evidence exists to support many interventions, making it challenging for clinicians to provide concrete recommendations. Research is needed to provide evidence in support of symptom-based interventions while novel approaches to these challenging problems are developed.

Research on cognitive and sociocognitive functions in patients with brain tumours: a bibliometric analysis and visualization of the scientific landscape

“…5 and 8 ), early research on cognitive functions in brain tumour patients focused on assessment of cognitive functions as a relevant outcome measure beside overall- and progression-free survival in clinical trials. Since both the treatment and the (residual) brain tumour itself might affect the individual’s ability to function in everyday life situations, “quality of survivorship” has become an additional research focus and survival alone is no longer considered an adequate single outcome measure [ 62 ] especially in patient populations that have to cope with potential impairments of (socio)cognitive functions for many years or even decades. In this vein, current research also focuses on interactions between cognitive functions and psychological constructs, for instance “anxiety” and “depression” since those constructs are important for general and mental health and therefore for “quality of survivorship”, for instance in terms of reintegration into social and occupational roles.…”

<p>Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma</p>

“…Complexity of the cause of symptoms and distress in patients with high-grade glioma also make it difficult to evaluate supportive and treatment effects. One obstacle is the lack of evidence to support many symptom-based interventions, making it challenging for health care professionals to provide recommendations 20. Still, to see a PRO measure as primary outcome in clinical trials in patients with high-grade gliomas is exceedingly rare.…”

“…Symptom management is one of the key components and includes identifying, preventing or treating the symptoms of the disease, side effects caused by treatment, and psychological, social or spiritual problems related to the disease or the treatment 19. Symptom management strategies can incorporate preventive interventions, patient and family self-management methods, and prescribed interventions to treat symptoms 20…”

Proposed Additions to the NCCN Guidelines for Adult Medulloblastoma

“…1 The workshop consensus was to recommend inclusion of the following items in the adult medulloblastoma algorithm, at a minimum: discuss contraception before initiating therapy; discuss risk of infertility caused by therapy and fertility preservation; offer psychologic support, such as participation in support groups; perform an evaluation for symptoms and medical management (endocrine, vision, hearing, neurocognitive deficits); and offer referral to neurorehabilitation both at initial diagnosis and at any other time as needed throughout the course of the disease. [41][42][43] Avoid Delays in Therapy After Initial Diagnosis…”