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Objective To compare agreement and reliability between clinician-measured and patient self-measured clinical and functional assessments for use in remote monitoring, in a home-based setting, using telehealth. Design Reliability study: repeated-measure, within-subject design. Setting Trained clinicians measured standard clinical and functional parameters at a face-to-face clinic appointment. Participants were instructed on how to perform the measures at home and to repeat self-assessments within 1 week. Participants Liver transplant recipients (LTRs) (N=18) (52±14y, 56% men, 5.4±4.3y posttransplant] completed the home self-assessments. Interventions Not applicable. Main Outcome Measures The outcomes assessed were body weight, systolic and diastolic blood pressure (SBP and DBP), waist circumference, repeated chair sit-to-stand (STST), maximal push-ups, and the 6-minute walk test (6MWT). Intertester reliability and agreement between face-to-face clinician and self-reported home-based participant measures were determined by intraclass-correlation coefficients (ICCs) and Bland-Altman plots, which were compared with minimal clinically important differences (MCID) (determined a priori ). Results The mean difference (95% confidence interval) and [limits of agreement] for measures (where positive values indicate lower participant value) were weight, 0.7 (0.01-1.4) kg [−2.2 to 3.6kg]; waist 0.4 (−1.2 to 2.0) cm [−5.9 to 6.8cm]; SBP 7.7 (0.6-14.7 ) mmHg [−19.4 to 34.9mmHg]; DBP 2.4 (−1.4 to 6.2 ) mmHg [−12.2 to 17.0mmHg]; 6MWT, 7.5 (−29.1 to 44.1) m [−127.3 to 142.4m]; STST 0.5 (−0.8 to 1.7) seconds [−4.3 to 5.3s]; maximal push-ups −2.2 (−4.4 to −0.1) [−10.5 to 6.0]. ICCs were all >0.75 except for STST (ICC=0.73). Mean differences indicated good agreement than MCIDs; however, wide limits of agreement indicated large individual variability in agreement. Conclusions Overall, LTRs can reliably self-assess clinical and functional measures at home. However, there was wide individual variability in accuracy and agreement, with no functional assessment being performed within acceptable limits relative to MCIDs >80% of the time.
Data were analysed using descriptive statistics and thematic analysis. Results In total 355 respondents completed the survey (overall response rate 25.1%). Statistical analysis of survey data revealed that n=100 respondents (28.2%) had been involved in a research study but only n=24 (6.8%) had been a lead investigator. Twenty-one (5.9%) respondents had a publication within the last five years and n=85 (23.9%) had presented a poster at a local (n=61, 17.2%), national (n=34, 9.6%) or international (n=22, 6.2%) conference. Just over a fifth (n=74; 20.8%) had given an oral presentation at a local (n=59, 16.6%), national (n=26, 7.3%) or international (n=15, 4.2%) conference. On a whole, respondents self-rated their research skills as weak or average across all stages of research (with overall research competence rated as weak/average n=236, 66.5%). Thematic analysis of qualitative data revealed six themes including; time for research; incentives to engage in research; awareness and promotion of research; research training needs; supports required to enable research; and perceived challenges impacting on nurses' ability to undertake research. Conclusions There is the need for a clearer strategic vision and political commitment to establish a research supportive environment for nurses working in children's hospitals to conduct research. Particular recommendations focus on additional time, mentorship, communication, information and education. This survey is one aspect of a number of activities informing the development of a research capacity building strategy for children's nursing at a time of reconfiguration of paediatric health services in Ireland.
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