Journal of pain and symptom management
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J Pain Symptom Manage · Jan 2022
ReviewDyspnoea-12 and Multidimensional Dyspnea Profile: Systematic Review of Use and Properties.
The Dyspnoea-12 (D-12) and Multidimensional Dyspnea Profile (MDP) were specifically developed for assessment of multiple sensations of breathlessness. ⋯ D-12 and MDP are widely used, reliable, valid and responsive across various chronic conditions, settings and languages, and could be considered standard instruments for measuring dimensions of breathlessness in international trials.
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J Pain Symptom Manage · Jan 2022
ReviewPalliative Care Intervention Trials for Adults Living with Progressive Central Nervous System Diseases and Their Caregivers: A Systematic Review.
Interest in implementing palliative care for adults living with progressive central nervous system diseases (PCNSD) and their caregivers is increasing. ⋯ Sparse, low-certainty evidence for PCI impact on patient QOL, symptom burden and caregiver burden indicate future research should consider refining study populations, interventions, outcomes assessed and outcome measures to detect any change due to PCI.
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J Pain Symptom Manage · Jan 2022
Multicenter Study Pragmatic Clinical TrialNatural Language Processing to Identify Advance Care Planning Documentation in a Multisite Pragmatic Clinical Trial.
Large multisite clinical trials studying decision-making when facing serious illness require an efficient method for abstraction of advance care planning (ACP) documentation from clinical text documents. However, the current gold standard method of manual chart review is time-consuming and unreliable. ⋯ NLP is more efficient and as accurate as manual chart review for identifying ACP documentation in studies with large patient cohorts.
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J Pain Symptom Manage · Jan 2022
Randomized Controlled TrialAn early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: The CASCADE pilot factorial trial.
Patients with advanced cancer often involve family caregivers in health-related decision-making from diagnosis to end-of-life; however, few interventions have been developed to enhance caregiver decision support skills. ⋯ We pilot tested components of CASCADE, an early palliative care decision support training intervention for family caregivers of patients with advanced cancer. CASCADE components were acceptable and the trial design feasible, providing promising future directions for palliative care intervention development and testing. Pilot results will inform a fully-powered trial.
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J Pain Symptom Manage · Jan 2022
Symptoms and Suffering at End of Life for Children with Complex Chronic Conditions.
Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). ⋯ Nearly one-third of parents of children with CCCs report high suffering in their child's final days of life. Parent preparedness was associated with lower perceived child suffering. Future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering.