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: 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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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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Background: Burn scar maturation can take several years but is generally studied shortly after injury. Therefore, we investigated patient-reported scar quality up to 5–7 years post-burn. Methods: Patients with ≤ 20 % total body surface area burned completed the Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS 2.0) on the same scar at 3, > 18 months (median 28 months) and 5–7 years (median 63 months) post-burn. Results: Fifty-eight patients (21 children; 37 adults) with a median total body surface area burned (TBSA) of 6.3 % participated. Average patient-reported scar quality (POSAS score) was generally worst at 3 months (median score: 4.2), best at 28 months (median score: 2.2) and intermediate at 63 months post-burn (median score: 3.4) (p < 0.001). Many patients (66 %) reported a median 1.8 point higher (worse) POSAS score at 63 months compared to 28 months post-burn, whereas 14 % reported an identical, and 21 % a lower (better) score. At any assessment, largest differences with normal skin were reported for scar colour. Univariate predictive factors of long-term patient-reported scar quality were scar quality at 3 months (p = 0.002) and 28 months post-burn (p < 0.001), full-thickness burn size (p = 0.033), length of hospital stay (p = 0.003), and number of surgeries (p < 0.001). Conclusion: Two-thirds of patients with burns up to 20 % TBSA scored the quality of their scars worse at 63 months compared to 28 months post-burn. Whether this corresponds to increased dissatisfaction with scars in the long term should be further investigated. These new insights add to the body of knowledge on scar maturation and underscores the importance of discussing patients’ expectations.
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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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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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Background: In the past years, a mobile health (mHealth) app called the Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in The Netherlands. The aim of development was to enable Dutch physical therapy patients to autonomously complete a health-related questionnaire regardless of their level of literacy and digital skills. Objective: The aim of this study was to evaluate the usability (defined as the effectiveness, efficiency, and satisfaction) of the prototype of the DTTSQ for Dutch physical therapy patients with diverse levels of experience in using mobile technology. Methods: The qualitative Three-Step Test-Interview method, including both think-aloud and retrospective probing techniques, was used to gain insight into the usability of the DTTSQ. A total of 24 physical therapy patients were included. The interview data were analyzed using a thematic content analysis approach aimed at analyzing the accuracy and completeness with which participants completed the questionnaire (effectiveness), the time it took the participants to complete the questionnaire (efficiency), and the extent to which the participants were satisfied with the ease of use of the questionnaire (satisfaction). The problems encountered by the participants in this study were given a severity rating that was used to provide a rough estimate of the need for additional usability efforts. Results: All participants within this study were very satisfied with the ease of use of the DTTSQ. Overall, 9 participants stated that the usability of the app exceeded their expectations. The group of 4 average-/high-experienced participants encountered only 1 problem in total, whereas the 11 little-experienced participants encountered an average of 2 problems per person and the 9 inexperienced participants an average of 3 problems per person. A total of 13 different kind of problems were found during this study. Of these problems, 4 need to be addressed before the DTTSQ will be released because they have the potential to negatively influence future usage of the tool. The other 9 problems were less likely to influence future usage of the tool substantially. Conclusions: The usability of the DTTSQ needs to be improved before it can be released. No problems were found with satisfaction or efficiency during the usability test. The effectiveness needs to be improved by (1) making it easier to navigate through screens without the possibility of accidentally skipping one, (2) enabling the possibility to insert an answer by tapping on the text underneath a photograph instead of just touching the photograph itself, and (3) making it easier to correct wrong answers. This study shows the importance of including less skilled participants in a usability study when striving for inclusive design and the importance of measuring not just satisfaction but also efficiency and effectiveness during such studies.
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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: Clinicians are currently challenged to support older adults to maintain a certain level of Functional Independence (FI). FI is defined as "functioning physically safely and independent from another person, within one's own context". A Core Outcome Set was developed to measure FI. The purpose of this study was to assess discriminative validity of the Core Outcome Set FI (COSFI) in a population of Dutch older adults (≥ 65 years) with different levels of FI. Secondary objective was to assess to what extent the underlying domains 'coping', 'empowerment' and 'health literacy' contribute to the COSFI in addition to the domain 'physical capacity'. Methods: A population of 200 community-dwelling older adults and older adults living in residential care facilities were evaluated by the COSFI. The COSFI contains measurements on the four domains of FI: physical capacity, coping, empowerment and health literacy. In line with the COSMIN Study Design checklist for Patient-reported outcome measurement instruments, predefined hypotheses regarding prediction accuracy and differences between three subgroups of FI were tested. Testing included ordinal logistic regression analysis, with main outcome prediction accuracy of the COSFI on a proxy indicator for FI. Results: Overall, the prediction accuracy of the COSFI was 68%. For older adults living at home and depending on help in (i)ADL, prediction accuracy was 58%. 60% of the preset hypotheses were confirmed. Only physical capacity measured with Short Physical Performance Battery was significantly associated with group membership. Adding health literacy with coping or empowerment to a model with physical capacity improved the model significantly (p < 0.01). Conclusions: The current composition of the COSFI, did not yet meet the COSMIN criteria for discriminative validity. However, with some adjustments, the COSFI potentially becomes a valuable instrument for clinical practice. Context-related factors, like the presence of a spouse, also may be a determining factor in this population. It is recommended to include context-related factors in further research on determining FI in subgroups of older people.
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Rationale, aims and objective: Primary Care Plus (PC+) focuses on the substitution of hospital-based medical care to the primary care setting without moving hospital facilities. The aim of this study was to examine whether population health and experience of care in PC+ could be maintained. Therefore, health-related quality of life (HRQoL) and experienced quality of care from a patient perspective were compared between patients referred to PC+ and to hospital-based outpatient care (HBOC). Methods: This cohort study included patients from a Dutch region, visiting PC+ or HBOC between December 2014 and April 2018. With patient questionnaires (T0, T1 and T2), the HRQoL and experience of care were measured. One-to-two nearest neighbour calliper propensity score matching (PSM) was used to control for potential selection bias. Outcomes were compared using marginal linear models and Pearson chi-square tests. Results: One thousand one hundred thirteen PC+ patients were matched to 606 HBOC patients with well-balanced baseline characteristics (SMDs <0.1). Regarding HRQoL outcomes, no significant interaction terms between time and group were found (P > .05), indicating no difference in HRQoL development between the groups over time. Regarding experienced quality of care, no differences were found between PC+ and HBOC patients. Only travel time was significantly shorter in the HBOC group (P ≤ .001). Conclusion: Results show equal effects on HRQoL outcomes over time between the groups. Regarding experienced quality of care, only differences in travel time were found. Taken as a whole, population health and quality of care were maintained with PC+ and future research should focus more on cost-related outcomes.
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