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Assessing symptoms, concerns and quality of life in non-cancer patients at end of life : how concordant are patients and family proxy members?
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CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers.
OBJECTIVE: To determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end-of-life.
METHODS: Sample dyads included a mix of patients residing at home, in nursing homes, long term care, and hospice. Diagnoses included Amyotrophic Lateral Sclerosis (ALS) (n=75), Chronic Obstructive Pulmonary Disease (COPD) (n=52), End Stage Renal Disease (ESRD) (n=42); and institutionalized, cognitively intact frail elderly (n=49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care (SISC), and Graham and Longman's 2-item Quality of Life Scale.
RESULTS: Concordance was less than 70% for 7 of the 25 PDI items, with the lowest concordance (65.1%) for the item "Not being able to continue with my usual routines". For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the SISC and Quality of Life Scales, the trend toward family members over-reporting patient distress and poor quality of life continued.
CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step towards minimizing patient and family burden at end-of-life.
http://dx.doi.org/10.1016/j.jpainsymman.2018.07.019
Voir la revue «JOURNAL OF PAIN AND SYMPTOM MANAGEMENT»
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