Patient Reported Experiences at a Swedish National Burn Centre.
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ABSTRACT:
SUBMITTER: Pompermaier L
PROVIDER: S-EPMC8737083 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ImportanceMedicare's End-Stage Renal Disease Quality Incentive Program incorporates measures of perceived value into reimbursement calculations. In 2016, patient experience became a clinical measure in the Quality Incentive Program scoring system. Dialysis facility performance in patient experience measures has not been studied at the national level to date.ObjectiveTo examine associations among dialysis facility performance with patient experience measures and patient, facility, and geographic characteristics.DesignIn this cross-sectional analysis, patients from a national end-stage renal disease registry receiving in-center hemodialysis in the United States on December 31, 2014, were linked with dialysis facility scores on the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS) survey. Of 4977 US dialysis facilities, 2939 (59.1%) reported ICH-CAHPS scores from April 8, 2015, through January 11, 2016. Multivariable linear regression models with geographic random effects were used to examine associations of facility ICH-CAHPS scores with patient, dialysis facility, and geographic characteristics and to identify the amount of total between-facility variation in patient experience scores explained by these categories. Data were analyzed from September 15, 2017, through June 1, 2018.ExposuresDialysis facility, geographic characteristic, and 10% change in patient characteristics.Main outcomes and measuresDialysis facility ICH-CAHPS scores and the total between-facility variation explained by different categories of characteristics.ResultsOf the 2939 facilities included in the analysis, adjusted mean ICH-CAHPS scores were 2.6 percentage points (95% CI, 1.5-3.7) lower in for-profit facilities, 1.6 percentage points (95% CI, 0.9-2.2) lower in facilities owned by large dialysis organizations, and 2.3 percentage points (95% CI, 0.5-4.2) lower in free-standing facilities compared with their counterparts. More nurses per patient was associated with 0.2 percentage points (95% CI, 0.03-0.3) higher scores; a privately insured patient population was associated with 1.2 percentage points (95% CI, 0.2-2.2) higher scores. Facilities with higher proportions of black patients had 0.95 percentage points (95% CI, 0.78-1.12) lower scores; more Native American patients, 1.00 percentage point (95% CI, 0.39-1.60) lower facility scores. Geographic location and dialysis facility characteristics explained larger proportions of the overall between-facility variation in ICH-CAHPS scores than did patient characteristics.Conclusions and relevanceThis study suggests that for-profit operation, free-standing status, and large dialysis organization designation were associated with less favorable patient-reported experiences of care. Patient experience scores varied geographically, and black and Native American populations reported less favorable experiences. The study findings suggest that perceived quality of care delivered in these settings are of concern, and that there may be opportunities for improved implementation of patient experience surveys as is highlighted.
| S-EPMC6233760 | biostudies-literature
Project description:ObjectivesTo examine the relative importance of patient and centre level factors in determining self-reported experience of care in patients with advanced kidney disease treated by maintenance haemodialysis (HD).DesignAnalysis of data from a cross sectional national survey; the UK Renal Registry (UKRR) national Kidney patient-reported experience measure (PREM) survey (2018). Centre-level data were obtained from the UKRR report (2018).SettingNational survey of patients with advanced kidney disease receiving treatment with maintenance HD in UK renal centres in 2018.ParticipantsThe Kidney PREM was distributed to all UK renal centres by the UKRR in May 2018. Each centre invited patients receiving outpatient treatment for kidney disease to complete the PREM. These included patients with chronic kidney disease, those receiving dialysis-both HD and peritoneal dialysis, and those with a functioning kidney transplant. There were no formal inclusion/exclusion criteria.Main outcome measuresThe Kidney PREM has 38 questions in 13 subscales. Responses were captured using a 7-point Likert scale (never 1, always 7). The primary outcome of interest was the mean PREM score calculated across all questions. Multilevel modelling was used to determine the proportion of variation of the mean PREM score across centres due to patient-related and centre-related factors.ResultsThere were records for 8253 HD patients (61% men, 77% white) from 69 renal centres (9-710 patients per centre). There was significant variation in mean PREM score across centres (5.35-6.53). In the multivariable analysis there was some variation in relation to both patient- and centre-level factors but these contributed little to explaining the overall variation. However, multilevel modelling showed that the overwhelming proportion of the explained variance (45%) was explained by variation between centres (40%), only a small proportion of which is identified by measured factors. Only 5% of the variation was related to patient-level factors.ConclusionsCentre rather than patient characteristics determine the experience of care of patients receiving HD. Further work is required to define the characteristics of the treating centre which determine patient experience.
| S-EPMC8054084 | biostudies-literature
Project description:IntroductionThe use of patient-reported outcomes (PROs) to systematically quantify adverse events (AE) will assist in the improvement of medical care and the QoL of patients living with HIV (PLWH). The aim of this study was to investigate the associations between self-reported side effects and other PROs, demographics and laboratory data, and further evaluate the Health Questionnaire (HQ) as a tool for following trends in patient-reported side effects over time in relation to trends in prescribed third agent in ART.Materials and methodsThe Swedish National Registry InfCareHiv includes an annual self-reported nine-item HQwhich is used in patient-centered HIV care in all Swedish HIV units. In this study, the experience of side effects was addressed. We analyzed 9,476 HQs completed by 4,186 PLWH together with details about their prescribed ART and relevant biomarkers collected during 2011-2017. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and mixed logistic regression.ResultsThe cross-sectional analysis of the HQs showed that the frequency of reported side effects decreased from 32% (2011) to 15% (2017). During the same period, there was a shift in ART prescription from efavirenz (EFV) to dolutegravir (DTG) (positive correlation coefficient r = 0.94, p = 0.0016). Further, PLWH who reported being satisfied with their physical health (OR: 0.47, p = <0.001) or psychological health (OR: 0.70, p = 0.001) were less likely to report side effects than those less satisfied.ConclusionsSelf-reported side effects were found to have a close relationship with the patient's ratings of their overall health situation and demonstrated a strong correlation with the sharp decline in use of EFV and rise in use of DTG, with reported side effects being halved. This study supports the feasibility of using the HQ as a tool for longitudinal follow up of trends in PROs.
| S-EPMC7757802 | biostudies-literature
Project description:BACKGROUND:Understanding children's views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs. METHODS:In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a 'heart problem'. We compared the characteristics of children with more and less severe cardiac diagnoses and, through collaborative inductive content analysis, investigated the subjective experiences and coping strategies described by children in both clinical severity groups. RESULTS:Text and/or drawings were returned by 436 children (246 boys [56%], mean age 12.1 years [SD 1.0; range 10-14]); 313 had less severe (LS) and 123 more severe (MS) cardiac diagnoses. At the most recent hospital visit, a higher proportion of the MS group were underweight (more than two standard deviations below the mean for age) or cyanosed (underweight: MS 20.0%, LS 9.9%; cyanosed: MS 26.2%, LS 3.5%). Children in the MS group described concerns about social isolation and feeling 'different', whereas children with less severe diagnoses often characterised their CHD as 'not a big thing'. Some coping strategies were common to both severity groups, including managing health information to avoid social exclusion, however only children in the LS group considered their CHD 'in the past' or experienced a sense of survivorship. CONCLUSIONS:Children's reported experiences were not dependent on their cardiac diagnosis, although there were clear qualitative differences by clinical severity group. Children's concerns emphasised social participation and our findings imply a need to shift the clinical focus from monitoring cardiac function to optimising participation. We highlight the potential for informing and evaluating clinical practice and service provision through seeking patient-reported outcomes in paediatric care.
| S-EPMC4972252 | biostudies-literature
Project description:ObjectiveThe standard data-collection procedure in the Norwegian national patient experience survey programme is post-discharge mail surveys, which include a pen-and-paper questionnaire with the option to answer electronically. A purely electronic protocol has not previously been explored in Norway. The aim of this study was to compare response rates, background characteristics, data quality and main study results for a survey of patient experiences with general practitioners (GPs) administered by the standard mail data-collection procedure and a web-based approach.DesignCross-sectional survey.SettingGP offices in Norway.ParticipantsThe sample consisted of 6999 patients aged 16 years and older registered with a GP in November 2018.InterventionBased on a three-stage sampling design, 6999 patients of GPs aged 16 or older were randomised to one of two survey administration protocols: Group A, who were mailed an invitation with both a pen-and-paper including an electronic response option (n=4999) and Group B, who received an email invitation with electronic response option (n=2000).Main outcome measuresResponse rates, background characteristics, data quality and main study results.ResultsThe response rate was markedly higher for the mail survey (42.6%) than for the web-based survey (18.3%). A few of the background variables differed significantly between the two groups, but the data quality and patient-reported experiences were similar.ConclusionsWeb-based surveys are faster and less expensive than standard mail surveys, but their low response rates and coverage problems threaten their usefulness and legitimacy. Initiatives to increase response rates for web-based data collection and strategies for tailoring data collection to different groups should be key elements in future research.
| S-EPMC7554501 | biostudies-literature
Project description:BackgroundWith the onset of coronavirus disease 2019 (COVID-19), the delivery of routine outpatient heart failure (HF) care abruptly shifted to telehealth. Appropriate HF management extensively relies upon patient-reported symptoms. With the growing attention towards patient-centered care, our team recognized an invaluable opportunity to solicit patient-reported subjective experiences regarding telehealth.MethodsIn total, 127 patients with a known diagnosis of HF were contacted by phone for participation in an online questionnaire. The tool consisted of questions generated by the investigators and from prior validated patient-reported experience measures. The intention was to assess the quality of care in our HF clinic and to solicit feedback regarding telehealth.ResultsThirty-five patients provided a response. Questions with the most favorable outcomes were in line with our predetermined themes of interpersonal matter, communication, and perceived quality of care. The worst performing questions exhibited a lack of satisfaction with and perceived quality of telehealth. Only 9% (n = 3) preferred follow-up via telehealth, 69% (n = 22) preferred in-person, and 22% (n = 7) were indifferent.ConclusionsGiven the multitude of benefits of telehealth, especially appropriate social distancing, telehealth is quite likely here to stay. In sum, with the rapid change in care delivery, patients currently perceive the care delivered via telehealth to be of inferior quality. This lack of quality can be largely attributed to the lack of physical examination, depersonalization of healthcare, and likely, a lack of familiarity with the platform. We urge our colleagues to solicit similar feedback from their patients to improve their own telehealth efforts.
| S-EPMC8139753 | biostudies-literature
Project description:Population-based registers are widely used in epidemiological studies. We aimed to estimate the validity of multiple sclerosis (MS) diagnoses registered in the Swedish National Patient Register (NPR) by two sequential register-based case-definition algorithms. Prevalent MS patients aged 16-64 years were identified from the in- and specialised out-patient NPR in 2001-2013, using International Classification of Diseases code G35. These identified MS diagnoses were validated through two sequential register-based case-definition algorithms, as the 'gold-standard' reference, by linking individual-level data longitudinally to other nationwide registers. The primary algorithm first sought to corroborate the MS diagnoses with MS-specific information in other nationwide registers. The exploratory secondary algorithm identified individuals with MS-related information in other registers and those who were unable to be followed sufficiently. Through multi-register linkage, we estimated the number of confirmed and uncertain individuals with an MS diagnosis recorded in the NPR. A total of 19,781 individuals (mean age at first visit 45.2 years; 69.5% women) had at least one MS diagnosis recorded in the NPR during 2001-2013. Using the two case-definition algorithms, 92.5% (n?=?18,291) of the MS diagnoses recorded in the NPR were confirmed, while 7.5% (n?=?1490) remained uncertain. Our findings indicate that a very high percentage of patients coded with an MS diagnosis in the Swedish NPR actually have MS, and supports the use of the NPR as a viable source to identify individuals with an MS diagnosis for population-based research. This exploratory methods paper suggests an alternative novel method to verify individuals' diagnoses in register-based settings.
| S-EPMC7010617 | biostudies-literature
Project description:Background and objectivesNew payment models resulting from the Advancing American Kidney Health initiative may create incentives for nephrologists to focus less on face-to-face in-center hemodialysis visits. This study aimed to understand whether more frequent nephrology practitioner dialysis visits improved patient experience and could help inform future policy.Design, setting, participants, & measurementsIn a cross-sectional study of patients receiving dialysis from April 1, 2015 through January 31, 2016, we linked patient records from a national kidney failure registry to patient experience data from the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey. We used a multivariable mixed effects linear regression model to examine the association between nephrology practitioner visit frequency and patient-reported experiences with nephrologist care.ResultsAmong 5125 US dialysis facilities, 2981 (58%) had ≥30 In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems surveys completed between April 2015 and January 2016, and 243,324 patients receiving care within these facilities had Medicare Parts A/B coverage. Face-to-face practitioner visits per month were 71% with four or more visits, 17% with two to three visits, 4% with one visit, and 8% with no visits. Each 10% absolute greater proportion of patients seen by their nephrology practitioner(s) four or more times per month was associated with a modestly but statistically significant lower score of patient experience with nephrologist care by -0.3 points (95% confidence interval, -0.5 to -0.1) and no effect on experience with other domains of dialysis care.ConclusionsIn an analysis of patient experiences at the dialysis facility level, frequent nephrology practitioner visits to facilities where patients undergo outpatient hemodialysis were not associated with better patient experiences.
| S-EPMC8425623 | biostudies-literature
Project description:The aim of this study was to find out whether the charging costs (calculated using interventional burn score) increased as mortality decreased.During the last 2 decades, mortality has declined significantly in the Linköping Burn Centre. The burn score that we use has been validated as a measure of workload and is used to calculate the charging costs of each burned patient.We compared the charging costs and mortality in 2 time periods (2000-2007 and 2008-2015). A total of 1363 admissions were included. We investigated the change in the burn score, as a surrogate for total costs per patient. Multivariable regression was used to analyze risk-adjusted mortality and burn score.The median total body surface area % (TBSA%) was 6.5% (10-90 centile 1.0-31.0), age 33 years (1.3-72.2), duration of stay/ TBSA% was 1.4 days (0.3-5.3), and 960 (70%) were males. Crude mortality declined from 7.5% in 2000-2007 to 3.4% in 2008-2015, whereas the cumulative burn score was not increased (P? = ?.08). Regression analysis showed that risk-adjusted mortality decreased (odds ratio 0.42, P? = ?.02), whereas the adjusted burn score did not change (P? = ?.14, model R 0.86).Mortality decreased but there was no increase in the daily use of resources as measured by the interventional burn score. The data suggest that the improvements in quality obtained have been achieved within present routines for care of patients (multidisciplinary/orientated to patients' safety).
| S-EPMC5484180 | biostudies-literature
Project description: Not available
| S-EPMC10898865 | biostudies-literature