Abstract
BackgroundSymptom distress in patients toward the end of life can change rapidly. Family caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Electronic health (eHealth) systems may be able to provide those resources. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could.ObjectiveThe aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient’s symptoms, as reported by a family caregiver.MethodsA pooled analysis from two randomized clinical trials (NCT00214162 and NCT00365963) compared outcomes at 12 months for two unblinded groups: a control group (Comprehensive Health Enhancement Support System [CHESS]-Only) that gave caregivers access to CHESS, an online support system, and an experimental group (CHESS+CR [Clinician Report]), which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severity. Participants were dyads (n=235) of patients with advanced lung, breast, or prostate cancer and their respective family caregivers from 5 oncology clinics in the United States of America. The proportion of improved patient threshold symptoms was compared between groups using area-under-the-curve analysis and binomial proportion tests. The proportion of threshold symptoms out of all reported symptoms was also examined.ResultsWhen severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians (P<.001). Fewer symptom reports were completed in the group of caregivers whose reports went to clinicians than in the CHESS-Only group (P<.001), perhaps because caregivers, knowing their reports might be sent to a doctor, feared they might be bothering the clinician.ConclusionsThis study suggests that an eHealth system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress.Trial RegistrationClinicaltrials.gov NCT00214162; https://clinicaltrials.gov/ct2/show/NCT00214162 (Archived by WebCite at http://www.webcitation.org/6nmgdGfuD) and Clinicaltrials.gov NCT00365963; https://clinicaltrials.gov/ct2/show/NCT00365963 (Archived by WebCite at http://www.webcitation.org/6nmh0U8VP)
Highlights
Managing Patient Symptom DistressAs advanced cancer treatments enable patients to live longer, managing patient symptoms becomes even more important for patients, informal caregivers, and clinicians [1,2,3,4,5]
J Med Internet Res 2017 | vol 19 | iss. 11 | e354 | p. 1 in the group of caregivers whose reports went to clinicians than in the Comprehensive Health Enhancement Support System (CHESS)-Only group (P
This study suggests that an Electronic health (eHealth) system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress
Summary
As advanced cancer treatments enable patients to live longer, managing patient symptoms becomes even more important for patients, informal (family or friend) caregivers, and clinicians [1,2,3,4,5]. Research has shown the importance of timely alerts to providers regarding disconcerting changes in patient conditions. Often changes in a patient’s symptoms are reported only at a clinical visit and the patient’s condition is often harder to manage than when the symptoms first worsened. Caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could
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