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Vol. LXVII, No. 20
September 25, 2015
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NINR, NCATS Host Two Workshops

Dr. Andrea Barsevick, director of nursing research at Fox Chase Cancer Center, speaks at the workshop on symptom science.
Dr. Andrea Barsevick, director of nursing research at Fox Chase Cancer Center, speaks at the workshop on symptom science.
The National Institute of Nursing Research recently hosted two workshops with the National Center for Advancing Translational Sciences.

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 about knowledge gaps in palliative care and caregiving for those affected by rare diseases. The workshop highlighted the need for research focused on caregivers and families of those facing advanced rare diseases, since most rare disorders have intensive, long-term caregiving and palliative care needs.

Participating was Grace Whiting, director of strategic partnerships for the National Alliance for Caregiving, who touched on the role of research in improving quality of life for patients and families by providing an “evidence base” to improve clinical, patient and caregiver understanding of the benefits of palliative care.

NINR director Dr. Patricia Grady ended the day with remarks emphasizing 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 evidence-based discussion on the state of the science of symptom clusters in chronic conditions, such as rare cancers. The workshop emphasized that a transformation is needed to enhance quality of life for those living with chronic illnesses.

NINR director Dr. Patricia Grady (front, fourth from r) and palliative care experts meet at a recent joint NINR-NCATS workshop.
NINR director Dr. Patricia Grady (front, fourth from r) and palliative care experts meet at a recent joint NINR-NCATS workshop.

The workshop involved an interdisciplinary working group of experts from the extramural clinical research community and partners from other NIH institutes. There was representation from nursing, medicine, oncology, psychology and bioinformatics. The day was divided into four sessions of panel presentations addressing key science areas such as defining characteristics of symptom clusters, underlying causative mechanisms, identification of priority clusters, measurement issues, targeted interventions and new analytic strategies.

Expert discussion after each presentation allowed gaps and opportunities within the science areas to emerge. The chair of the working group, Dr. Christine Miaskowski, American Cancer Society clinical research professor and endowed chair in symptom management research at the University of California, San Francisco, ended the day with a session to gather consensus on definitive elements to be included in a future blueprint to guide symptom clusters research in chronic conditions.


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