scholarly journals Patient-reported outcome measures as a new application in the Swedish Renal Registry: health-related quality of life through RAND-36

2019 ◽  
Author(s):  
Agneta A Pagels ◽  
Maria Stendahl ◽  
Marie Evans
Keyword(s):  
Age Groups ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Age Group ◽  
Patient Reported ◽  
Related Quality ◽  
Centered Care ◽  
Health Related ◽  
Impaired Health

AbstractBackgroundAlthough patient-reported outcome measures (PROMs) are gaining increased interest in developing health care quality and are a useful tool in person-centered care, their use in routine care is still limited. The aim of this study is to describe the implementation and initial results of PROMs via the Swedish Renal Registry (SRR) on a national level.MethodsAfter testing and piloting the electronic PROM application, nationwide measures were carried out in 2017 for completing the RAND-36 questionnaire online or by paper in a wide range of chronic kidney disease (CKD) patients (Stages 3–5, dialysis and transplantation) through the SRR. Cross-sectional results during the first year were analyzed by descriptive statistics and stratified by treatment modality.ResultsA total of 1378 patients from 26 of 68 renal units (39%) completed the questionnaire. The response rate for all participating hemodialysis units was 38.9%. The CKD patients had an impaired health profile compared with a Swedish general population, especially regarding physical functions and assessed general health (GH). Transplanted patients had the highest scores, whereas patients on dialysis treatment had the lowest scores. The youngest age group assessed their physical function higher and experienced fewer physical limitations and less bodily pain than the other age groups but assessed their GH and vitality (VT) relatively low. The oldest age group demonstrated the lowest health profile but rated their mental health higher than the other age groups. The older the patient, the smaller the difference compared with persons of the same age in the general population.ConclusionsNationwide, routine collection of PROMs is feasible in Sweden. However, greater emphasis is needed on motivating clinical staff to embrace the tool and its possibilities in executing person-centered care. CKD patients demonstrate impaired health-related quality of life, especially regarding limitations related to physical problems, GH and VT/energy/fatigue.

Patient Reported Outcome Measures of Health-Related Quality of Life and Asthenia after Thyroidectomy

2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Computerized adaptive technology for the assessment of HRQOL of PD and CKD patients

2020 ◽  
pp. 089686082095996
Author(s):  
Fredric O Finkelstein ◽  
Monica Cimini ◽  
Susan H Finkelstein ◽  
Alan S Kliger
Keyword(s):  
Quality Of Life ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Adaptive Technology ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

This study was designed as a pilot study to see whether electronic patient-reported outcome measures using computer adaptive technology (CAT) could be successfully implemented in clinics caring for chronic kidney disease (CKD) and peritoneal dialysis (PD) patients. The results demonstrate the feasibility of using CAT on an iPad to assess the symptom burden and health-related quality of life of both PD and CKD patients.

Use of Patient-reported Outcome Measures and Patient-reported Experience Measures within Evaluation Studies of Telemedicine Applications: Systematic Review (Preprint)

2021 ◽  
Author(s):  
Andreas Knapp ◽  
Lorenz Harst ◽  
Stefan Hager ◽  
Jochen Schmitt ◽  
Madlen Scheibe
Keyword(s):  
Evaluation Studies ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Controlled Trials ◽  
Health Related Quality ◽  
Emotional Function ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

BACKGROUND With the rise of digital health technologies and telemedicine services, the need for evidence-based evaluation is growing. Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are recommended as an essential part of comprehensive and multidisciplinary evaluation studies on telemedicine applications. For the first time, a systematic review has been conducted investigating the use of PROMs and PREMs in evaluation studies of telemedicine applications covering all application types and medical purposes. OBJECTIVE Our review investigates the following research questions: • In which scenarios were PROMs and PREMs collected for evaluation purposes? • Which PROM/PREM outcome domains have been covered and how often? • Which outcome measurement instruments (OMIs) have been used and how often? • Did the selection and quantity of PROMs and PREMs differ between study types and application types? • Has the use of PROMs and PREMs in evaluation studies changed over time? METHODS We conducted a systematic literature search in the MEDLINE and EMBASE databases and included studies published from inception until April 2, 2020. We included studies evaluating telemedicine applications with patients as main users; these studies reported PROMs and PREMs within randomized controlled trials (RCT), controlled trials, non-controlled trials and feasibility trials in English and German. RESULTS Out of 2671 records identified, 303 studies were included with 22.1% (67/303) feasibility studies, 23.1% (70/303) non-controlled trials, 6.6% (20/303) controlled trials and 48.2% (146/303) RCTs. Health-related quality of life (n=307, mean=1.0, SD=1.04), emotional function (n=244, mean=0.81, SD=1.18) and adherence (n=103, mean=0.34, SD=0.53) were the most frequently assessed outcome domains. 21.4% (65/303) of all studies used self-developed PROMs and 22.3% (68/303) self-developed PREMs. PROMs (n=884) were assessed more frequently than PREMs (n=234). As the evidence level of the studies increased, the number of PROMs also increased (τ=-0.45) with the number of PREMs decreasing (τ=0.35) at the same time. Since 2000, not only has the number of evaluation studies using PROMs/PREMs increased – the level of evidence and the number of OMIs used have also increased, with the number of PREMs permanently remaining at a lower level compared to the number of PROMs. CONCLUSIONS There have been increasingly more studies, particularly high-evidence studies, which use PROMs and PREMs to evaluate telemedicine applications. PROMs have been used more frequently than PREMs. With an increasing maturity stage of the telemedicine applications and higher evidence level, the use of PROMs increased in line with the recommendations of evaluation guidelines. Health-related quality of life (HRQoL) and emotional function were measured in almost all studies whereas health literacy as a critical precondition for using the application properly to gain health benefits was rarely reported. Therefore, further efforts should be pursued for the standardization of PROM and PREM collection in evaluation studies of telemedicine applications.

Assessing Patients’ Unmet Palliative Care Needs With Tools for Assessment

2020 ◽  
pp. 49-57
Author(s):  
Chandra Thomas ◽  
Amanda Halpin
Keyword(s):  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Management Plan ◽  
Patient Reported Outcome ◽  
Care Needs ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

High symptom burden of living with kidney disease negatively impacts patients’ health-related quality of life, making it important to routinely screen for symptoms to identify their unmet needs. Research shows that clinicians are inaccurate at estimating symptoms of their patients; therefore, validated tools called patient-reported outcome measures have been developed to improve screening for and identification of troublesome symptoms patients are experiencing. Routinely incorporating patient-reported outcome measures will likely require some change to many current practices; utilizing a change management plan with appointed champion(s) and a supporting multidisciplinary team can help ensure the success of this practice transformation.

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