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1.
Br J Nurs ; 30(17): S24-S30, 2021 Sep 23.
Article in English | MEDLINE | ID: mdl-34605263

ABSTRACT

Myeloproliferative neoplasms (MPNs) are associated with a high disease burden, reduced quality of life and shortened survival. The aim of this questionnaire was to gain patients' and caregivers' perspectives on the impact of living with an MPN in the Republic of Ireland. An Irish adaptation of the 'Global MPN Landmark survey' was conducted. Fifty-one patients and 44 caregivers completed the questionnaire. Patients reported a wide variety of symptoms at the time of questionnaire completion; fatigue, bone pain and pruritus being most frequently reported. Approximately one-third of respondents from each of the groups (patients and caregivers) reported a negative impact of MPNs on their emotional wellbeing and daily lives. The study findings revealed that, despite treatment, symptom burden remains high, and several unmet needs exist, including educational, emotional and peer group support. Interventions that focus on reducing symptom burden and addressing these unmet needs, may improve the quality of life for patients with MPNs and their caregivers.


Subject(s)
Caregivers , Quality of Life , Cost of Illness , Fatigue , Humans , Ireland
2.
Biomed Instrum Technol ; 49(3): 214-22, 2015.
Article in English | MEDLINE | ID: mdl-25993585

ABSTRACT

UNLABELLED: Medical alarm signals are important for alerting clinicians to life-threatening conditions, but the high rate of false alarms can be problematic. Reduction in alarm signals may lead to increased staff responsiveness to alarms and create a quieter environment for patients. The effect of these changes on patient outcomes is uncertain. METHODS: We conducted a pilot, prospective, randomized, controlled trial in the cardiac care unit (CCU) to test a study protocol and data collection instruments and to examine the differences in alarms between usual care and altered settings. Subjects were randomized daily to either standard or altered CCU alarm settings. Secondary outcomes included the number of clinically significant events (CSEs) detected, event-triggered interventions (ETIs), frequency of alarms per monitored bed, and patient complications. RESULTS: Over the two-week study time frame, 22 unique patients were enrolled. There were 1,710 alarms over 163 hours of monitoring in the standard group and 1,165 alarms over 169 hours in the study group (P < 0.001). There were more CSEs detected (14 vs. 3) and ETIs (12 vs. 2) in the study group, but sample size was too small to determine efficacy. No cardiac arrests or adverse patient outcomes were observed in either group. All patients were discharged from the hospital. Study protocol and outcomes were feasible and lessons were learned. CONCLUSION: This study demonstrated feasibility of a study protocol for conducting a randomized controlled trial to evaluate CSEs, ETIs, frequency of alarms, and adverse patient outcomes when altering default alarm settings. A longer study can be performed using a similar study design.


Subject(s)
Clinical Alarms , Monitoring, Physiologic/instrumentation , Data Collection , Female , Heart Diseases/diagnosis , Humans , Male , Middle Aged , Pilot Projects , Prospective Studies
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