![]() 5įor each patient, demographics and clinical data, including all symptoms and applied interventions, covering the period of the last 12 weeks (i.e. Eligible patients were those aged 0–18 years receiving palliative care following the diagnosis of a typical DIPG on MR-imaging, defined as a T1-weighted hypointense and T2-weighted hyperintense tumor with at least 50% involvement of the pons on T2 as confirmed by the local radiologist. A retrospective chart review was performed for children with DIPG who were diagnosed between 19. This study was approved by the institutional review boards of the Royal Marsden Hospital and Great Ormond Street Hospital. The aim of this first study was therefore (i) to investigate DIPG-specific symptoms and their evolution during the 12 weeks before death, (ii) describe the current palliative and end-of-life care approach, including the timing of initiation and the use of clinical guidelines, and (iii) evaluate the potential need for uniform international disease-specific palliative and end-of-life care guidelines for DIPG. This raises the important questions of when to introduce the concept of palliative care and when a more active end-of-life phase is indicated. 4 Currently, radiotherapy may temporarily reduce symptoms for DIPG patients, but premature death remains inevitable. 3 Since DIPG is a rapidly progressive and severely disabling disease, it is important to examine the disease-specific distressing symptoms and their evolution over time to optimally anticipate the interventions and services needed for holistic palliative and active end-of-life care as defined by the World Health Organization (WHO). To the best of our knowledge, no data have been published that describe the symptoms in DIPG patients at end-stage disease and, most importantly, the associated specific needs for palliative and active end-of-life care.Įighty-nine percent of parents whose child died of cancer report at least one distressing symptom in the last month of life. Local disturbance results in symptoms that severely affect the child's daily functioning and quality of life, especially at end-stage disease. ![]() The pons regulates vital autonomic functions, contains nuclei of the cranial nerves, and serves as a bridge for neuronal tracts from the brain to the spinal cord. ![]() 1, 2 Tumor growth and associated peritumoral edema lead to serious dysfunction of internal pontine and brainstem structures. Despite decades of clinical research, the dismal prognosis and inevitable neurological decline has not changed for patients suffering from diffuse intrinsic pontine glioma (DIPG). ![]()
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