The National Institute of Nursing Research (NINR) hosted two workshops in June with the National Center for Advancing Translational Sciences (NCATS).
The first workshop, “The Spectrum of Caregiving and Palliative Care in Serious, Advanced Rare Diseases,” brought together a community of experts in palliative care, pediatrics and adolescent care, oncology, and neurology to examine key priorities and research questions to address the knowledge gaps in palliative care and caregiving for those impacted by rare diseases.
NINR’s director, Dr. Patricia Grady, ended the day with closing remarks which emphasized the need to consider the wishes of the patient and family, “What people want is quality of life. We have to think about whether an intervention really helps achieve patient and family goals.”
The second workshop, “Advancing Symptom Science through Symptom Cluster Research,” was held to stimulate evidenced-based discussion on the state of the science of symptom clusters in chronic conditions, such as rare cancers. The workshop emphasized that a transformation as to how symptoms are understood and treated is needed to enhance quality of life for those living with chronic illnesses.
The workshop involved an interdisciplinary working group of experts from the extramural clinical research community and partners from other NIH institutes. Expert discussion after each presentation allowed gaps and opportunities within the science areas to emerge. The day ended with a session to gather consensus on a summary of definitive elements to be included in a future blueprint to guide symptom clusters research in chronic conditions.