Background: Effective telemonitoring is possible through repetitive collection of electronic patient-reported outcome measures (ePROMs) in patients with chronic diseases. Low adherence to telemonitoring may have a negative impact on the effectiveness, but it is unknown which factors are associated with adherence to telemonitoring by ePROMs. The objective was to identify factors associated with adherence to telemonitoring by ePROMs in patients with chronic diseases. Methods: A systematic literature search was conducted in PubMed, Embase, PsycINFO and the Cochrane Library up to 8 June 2021. Eligibility criteria were: (1) interventional and cohort studies, (2) patients with a chronic disease, (3) repetitive ePROMs being used for telemonitoring, and (4) the study quantitatively investigating factors associated with adherence to telemonitoring by ePROMs. The Cochrane risk of bias tool and the risk of bias in nonrandomized studies of interventions were used to assess the risk of bias. An evidence synthesis was performed assigning to the results a strong, moderate, weak, inconclusive or an inconsistent level of evidence. Results: Five studies were included, one randomized controlled trial, two prospective uncontrolled studies and two retrospective cohort studies. A total of 15 factors potentially associated with adherence to telemonitoring by ePROMs were identified in the predominate studies of low quality. We found moderate-level evidence that sex is not associated with adherence. Some studies showed associations of the remaining factors with adherence, but the overall results were inconsistent or inconclusive. Conclusions: None of the 15 studied factors had conclusive evidence to be associated with adherence. Sex was, with moderate strength, not associated with adherence. The results were conflicting or indecisive, mainly due to the low number and low quality of studies. To optimize adherence to telemonitoring with ePROMs, mixed-method studies are needed.
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Abstract Background: Lifestyle interventions for severe mental illness (SMI) are known to have small to modest efect on physical health outcomes. Little attention has been given to patient-reported outcomes (PROs). Aim: To systematically review the use of PROs and their measures, and quantify the efects of lifestyle interventions in patients with SMI on these PROs. Methods: Five electronic databases were searched (PubMed/Medline, Embase, PsycINFO, CINAHL, and Web of Science) from inception until 12 November 2020 (PROSPERO: CRD42020212135). Randomised controlled trials (RCTs) evaluating the efcacy of lifestyle interventions focusing on healthy diet, physical activity, or both for patients with SMI were included. Outcomes of interest were PROs. Results: A total of 11.267 unique records were identifed from the database search, 66 full-text articles were assessed, and 36 RCTs were included, of which 21 were suitable for meta-analyses. In total, 5.907 participants were included across studies. Lifestyle interventions had no signifcant efect on quality of life (g=0.13; 95% CI=−0.02 to 0.27), with high heterogeneity (I2 =68.7%). We found a small efect on depression severity (g=0.30, 95% CI=0.00 to 0.58, I2 =65.2%) and a moderate efect on anxiety severity (g=0.56, 95% CI=0.16 to 0.95, I2 =0%). Discussion: This meta-analysis quantifes the efects of lifestyle interventions on PROs. Lifestyle interventions have no signifcant efect on quality of life, yet they could improve mental health outcomes such as depression and anxiety symptoms. Further use of patient-reported outcome measures in lifestyle research is recommended to fully capture the impact of lifestyle interventions.
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Background: Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and external justification (macro level). However, a deeper understanding of implementation issues of these measures is necessary. The narrative Patient Reported Experience Measure “Dit vind ik ervan!” (English “How I feel about it!”) is used in the Dutch disability care sector, but insight into its’ current use is lacking. We aimed to provide insight into experiences with the implementation and current ways of working with “Dit vind ik ervan!” as an integrated measurement strategy. A descriptive qualitative study was done at a disability care organisation. Data were collected by nine documentations, seven observations, 11 interviews and three focus groups. We applied deductive content analysis using the Consolidated Framework for Implementation Research as a framework. Results: Our analysis revealed facilitators and barriers for the implementation of “Dit vind ik ervan!”. We found most barriers at the micro level. Professionals and clients appreciated the measure’s narrative approach, but struggled to perform it with communication vulnerable clients. Some clients, professionals and team leaders were unfamiliar with the measure’s aim and benefit. On the meso level, implementation was done top-down, and the management’s vision using the measure as an integrated measurement approach was insufficiently shared throughout the organisation. Conclusions: Our study shows that Patient Reported Experience Measures have the potential to be used as an integrated measurement strategy. Yet, we found barriers at the micro level, which might have influenced using the measurement outcomes at the meso and macro level. Tailored implementation strategies, mostly focusing on designing and preparing the implementation on themicro level, need to be developed in co-creation with all stakeholders.
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Het Stroke Cohort Outcomes of REhabilitation (SCORE)-onderzoek bestaat tien jaar. Dit observationele onderzoek van Basalt volgt patiënten met een beroerte. Aanvankelijk was het doel om uitkomsten, praktijkvariatie in proces en structuur, en kosten te meten. Momenteel is het onderzoek meer gericht op meeteigenschappen van nieuwere Patient-Reported Outcome Measures (PROMs). In dit artikel geven we een overzicht van de resultaten van het SCORE-onderzoek met gerichte aanbevelingen en blikken we vooruit.
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Abstract Background: Patients with glioma often suffer from cognitive deficits. Physical exercise has been effective in ameliorating cognitive deficits in older adults and neurological patients. This pilot randomized controlled trial (RCT) explored the possible impact of an exercise intervention, designed to improve cognitive functioning in glioma patients, regarding cognitive test performance and patient-reported outcomes (PROs). Methods: Thirty-four clinically stable patients with World Health Organization grades II/III glioma were randomized to a home-based remotely coached exercise group or an active control group. Patients exercised 3 times per week for 20-45 minutes, with moderate to vigorous intensity, during 6 months. At baseline and immediate follow-up, cognitive performance and PROs were assessed with neuropsychological tests and questionnaires, respectively. Linear regression analyses were used to estimate effect sizes of potential between-group differences in cognitive performance and PROs at 6 months. Results: The exercise group (n = 21) had small- to medium-sized better follow-up scores than the control group (n = 11) on several measures of attention and information processing speed, verbal memory, and executive function, whereas the control group showed a slightly better score on a measure of sustained selective attention. The exercise group also demonstrated small- to medium-sized better outcomes on measures of self-reported cognitive symptoms, fatigue, sleep, mood, and mental health-related quality of life. Conclusions: This small exploratory RCT in glioma patients provides a proof of concept with respect to improvement of cognitive functioning and PROs after aerobic exercise, and warrants larger exercise trials in brain tumor patients.
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Background: The use of patient-reported outcomes to improve burn care increases. Little is known on burn patients’ views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs. Methods: Adult patients (≥18 years old), 3–36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (< 6 months) and long-term (6–24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried. Results: A total of 140 patients were included (response rate: 27%). ‘Not having pain’ and ‘good wound healing’ were identified as very important outcomes. Also, ‘physical functioning at pre-injury level’, ‘being independent’ and ‘taking care of yourself’ were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients’ opinions differed widely on the preferred frequency of follow-up. Conclusions: Not having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.
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INTRODUCTION: After treatment with chemotherapy, many patients with breast cancer experience cognitive problems. While limited interventions are available to improve cognitive functioning, physical exercise showed positive effects in healthy older adults and people with mild cognitive impairment. The Physical Activity and Memory study aims to investigate the effect of physical exercise on cognitive functioning and brain measures in chemotherapy-exposed patients with breast cancer with cognitive problems.METHODS AND ANALYTICS: One hundred and eighty patients with breast cancer with cognitive problems 2-4 years after diagnosis are randomised (1:1) into an exercise intervention or a control group. The 6-month exercise intervention consists of twice a week 1-hour aerobic and strength exercises supervised by a physiotherapist and twice a week 1-hour Nordic or power walking. The control group is asked to maintain their habitual activity pattern during 6 months. The primary outcome (verbal learning) is measured at baseline and 6 months. Further measurements include online neuropsychological tests, self-reported cognitive complaints, a 3-tesla brain MRI, patient-reported outcomes (quality of life, fatigue, depression, anxiety, work performance), blood sampling and physical fitness. The MRI scans and blood sampling will be used to gain insight into underlying mechanisms. At 18 months online neuropsychological tests, self-reported cognitive complaints and patient-reported outcomes will be repeated.ETHICS AND DISSEMINATION: Study results may impact usual care if physical exercise improves cognitive functioning for breast cancer survivors.TRIAL REGISTRATION NUMBER: NTR6104.
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Aim and objectives: To provide an in-depth insight into the barriers, facilitators and needs of district nurses and nurse assistants on using patient outcomes in district nursing care. Background: As healthcare demands grow, particularly in district nursing, there is a significant need to understand how to systematically measure and improve patient outcomes in this setting. Further investigation is needed to identify the barriers and facilitators for effective implementation. Design: A multi-method qualitative study. Methods: Open-ended questions of a survey study (N = 132) were supplemented with in-depth online focus group interviews involving district nurses and nurse assistants (N = 26) in the Netherlands. Data were analysed using thematic analysis. Results: Different barriers, facilitators and needs were identified and compiled into 16 preconditions for using outcomes in district nursing care. These preconditions were summarised into six overarching themes: follow the steps of a learning healthcare system; provide patient-centred care; promote the professional's autonomy, attitude, knowledge and skills; enhance shared responsibility and collaborations within and outside organisational boundaries; prioritise and invest in the use of outcomes; and boost the unity and appreciation for district nursing care. Conclusions: The preconditions identified in this study are crucial for nurses, care providers, policymakers and payers in implementing the use of patient outcomes in district nursing practice. Further exploration of appropriate strategies is necessary for a successful implementation. Relevance to clinical practice: This study represents a significant step towards implementing the use of patient outcomes in district nursing care. While most research has focused on hospitals and general practitioner settings, this study focuses on the needs for district nursing care. By identifying 16 key preconditions across themes such as patient-centred care, professional autonomy and unity, the findings offer valuable guidance for integrating a learning healthcare system that prioritises the measurement and continuous improvement of patient outcomes in district nursing.
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Background: Outcome assessment is essential to understand the impact and recovery of burns of the hand and tailor treatment. There is however, a large variety of measures and outcome assessment is often incomplete. The aim was therefore to initiate a set of outcome assessments for use in a clinical setting. Method: A concept set was drafted, based on the framework of the International Classification of Functioning, which distinguished two phases, three patient states and included both patient reported and clinical outcomes. Subsequently, potential assessments were allocated to the various outcomes. This concept was discussed during the European Burns Association congress in 2013 and revised. The revision was sent to 65 colleagues from 28 institutions, accompanied by a survey. Results: Eleven surveys were returned from 16 persons representing 9 institutions from 6 countries. Based on the feedback, final revisions were made. Points raised were time investment and translations of not all assessments already available. Conclusions: With multidisciplinary and international input, a multidimensional set of outcome assessments for burns of the hand has been established, covering almost all domains of functioning. This first step towards more uniform clinical evaluation, will contribute to knowledge on outcome and effectiveness of treatment of hand burns.
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Purpose: This research aimed to explore factors associated with patient-reported breast and abdominal scar quality after deep inferior epigastric perforator (DIEP) flap breast reconstruction (BR). Material and Methods: This study was designed as a descriptive cross-sectional survey in which women after DIEP flap BR were invited to complete an online survey on breast and abdominal scarring. The online survey was distributed in the Netherlands in several ways in order to reach a diverse population of women. Outcomes were assessed with the Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS). Additional items were assessed with a numeric rating scale (NRS). Results: A total of 248 women completed the survey. There was a statistically significant worse POSAS scar appraisal for the abdominal scar compared with the breast scar. The vast majority of women reported high scores on at least one scar characteristic of their breast scar or ab- dominal scar. Overall, color, stiffness, thickness, and irregularity scored higher than pain and itching. Women were only moderately positive about the size, noticeability, location, and the information provided regarding scarring. Conclusion: It is crucial to address the inevitability of scars in patient education before a DIEP flap BR, with a particular focus on the abdominal scar, as women experience abdominal scars significantly worse than their breast scars. Providing more information on the experience of other women and the expected appearance will contribute to having realistic expectations while allowing them to make well-informed decisions.
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