Implementation and use of patient-reported outcome measures in routine nephrology care

Healthcare is shifting towards a more person-centred approach, aiming at a personalised treatment that fits the patient’s preferences and needs⁠. The use of patient-reported outcome measures (PROMs) to systematically assess outcomes such as health-related quality of life and symptom burden can facilitate the process of adapting to what is important to the patient⁠. But, how to integrate PROMs into a routine care setting and how to use PROMs to achieve this personalised treatment? This dissertation provides insight into and practical knowledge of the implementation and use of PROMs in routine nephrology care⁠. Research was performed within the different steps for implementation of PROMs into routine care, including the selection of PROMs, pilot testing PROMs, and nationwide implementation and use of PROMs, using a broad variety of quantitative and qualitative research methods⁠. The use of PROMs was investigated both at individual patient level and at population level, with the potential to facilitate personalised treatment and evaluation of healthcare quality⁠. Patients and healthcare professionals considered the PROM-results relevant additional information in routine practice, complementary to traditional clinical measures⁠. In addition, discussing individual PROM results proved to be of great added value and directly applicable in routine care⁠.The work in this dissertation was supported by unrestricted grants from the Dutch Kidney Foundation (A1D1P04 and 18SWO03), the KIDZ program of the Dutch Patient Federation, the Dutch Health Insurers Association and CSL Vifor⁠. Printing of this dissertation was partially sponsored by Chiesi Pharmaceuticals B⁠.V⁠. and CSL Vifor⁠.LUMC / Geneeskund

Person centred care provision and care planning in chronic kidney disease: which outcomes matter? A systematic review and thematic synthesis of qualitative studies. Care planning in CKD: which outcomes matter?

Rationale & Objective: Explore priorities related to outcomes and barriers of adults with chronic kidney disease (CKD) regarding person centred care and care planning.Study design: Systematic review of qualitative studies.Search Strategy & Sources: In July 2018 six bibliographic databases, and reference lists of included articles were searched for qualitative studies that included adults with CKD stages 1-5, not on dialysis or conservative management, without a previous kidney transplantation.Analytical Approach: Three independent reviewers extracted and inductively coded data using thematic synthesis. Reporting quality was assessed using the COREQ and the review reported according to PRISMA and ENTREQ statements.Results: Forty-six studies involving 1493 participants were eligible. The period after diagnosis of CKD is characterized by feelings of uncertainty, social isolation, financial burden, resentment and fear of the unknown. Patients show interest in ways to return to normality and remain in control of their health in order to avoid further deterioration of kidney function. However, necessary information is often unavailable or incomprehensible. Although patients and healthcare professionals share the predominant interest of whether or not dialysis or transplantation is necessary, patients value many more outcomes that are often unrecognized by their healthcare professionals. We identified 4 themes with 6 subthemes that summarize these findings: 'pursuing normality and control' ('pursuing normality'; 'a search for knowledge'); 'prioritizing outcomes' ('reaching kidney failure'; 'experienced health'; 'social life'; 'work and economic productivity'); 'predicting the future'; and 'realising what matters'. Reporting quality was moderate for most included studies.Limitations: Exclusion of non-English articles.Conclusions: The realisation that patients' priorities do not match those of the healthcare professionals, in combination with the prognostic ambiguity, confirms fatalistic perceptions of not being in control when living with CKD. These insights may contribute to greater understanding of patients' perspectives and a more person-centred approach in healthcare prioritization and care planning within CKD care.Clinical epidemiolog

A meta-review demonstrates improved reporting quality of qualitative reviews following the publication of COREQ- and ENTREQ-checklists, regardless of modest uptake

Background Reviews of qualitative studies allow for deeper understanding of concepts and findings beyond the single qualitative studies. Concerns on study reporting quality led to the publication of the COREQ-guidelines for qualitative studies in 2007, followed by the ENTREQ-guidelines for qualitative reviews in 2012. The aim of this meta-review is to: 1) investigate the uptake of the COREQ- and ENTREQ- checklists in qualitative reviews; and 2) compare the quality of reporting of the primary qualitative studies included within these reviews prior- and post COREQ-publication. Methods Reviews were searched on 02-Sept-2020 and categorized as (1) COREQ- or (2) ENTREQ-using, (3) using both, or (4) non-COREQ/ENTREQ. Proportions of usage were calculated over time. COREQ-scores of the primary studies included in these reviews were compared prior- and post COREQ-publication using T-test with Bonferroni correction. Results 1.695 qualitative reviews were included (222 COREQ, 369 ENTREQ, 62 both COREQ/ENTREQ and 1.042 non-COREQ/ENTREQ), spanning 12 years (2007-2019) demonstrating an exponential publication rate. The uptake of the ENTREQ in reviews is higher than the COREQ (respectively 28% and 17%), and increases over time. COREQ-scores could be extracted from 139 reviews (including 2.775 appraisals). Reporting quality improved following the COREQ-publication with 13 of the 32 signalling questions showing improvement; the average total score increased from 15.15 to 17.74 (p-value < 0.001). Conclusion The number of qualitative reviews increased exponentially, but the uptake of the COREQ and ENTREQ was modest overall. Primary qualitative studies show a positive trend in reporting quality, which may have been facilitated by the publication of the COREQ.Clinical epidemiolog

Funnel plots of patient-reported outcomes to evaluate health-care quality: basic principles, pitfalls and considerations

A funnel plot is a graphical method to evaluate health-care quality by comparing hospital performances on certain outcomes. So far, in nephrology, this method has been applied to clinical outcomes like mortality and complications. However, patient-reported outcomes (PROs; eg, health-related quality of life [HRQOL]) are becoming increasingly important and should be incorporated into this quality assessment. Using funnel plots has several advantages, including clearly visualized precision, detection of volume-effects, discouragement of ranking hospitals and easy interpretation of results. However, without sufficient knowledge of underlying methods, it is easy to stumble into pitfalls, such as overinterpretation of standardized scores, incorrect direct comparisons of hospitals and assuming a hospital to be in-control (ie, to perform as expected) based on underpowered comparisons. Furthermore, application of funnel plots to PROs is accompanied by additional challenges related to the multidimensional nature of PROs and difficulties with measuring PROs. Before using funnel plots for PROs, high and consistent response rates, adequate case mix correction and high-quality PRO measures are required. In this article, we aim to provide insight into the use and interpretation of funnel plots by presenting an overview of the basic principles, pitfalls and considerations when applied to PROs, using examples from Dutch routine dialysis care.Development and application of statistical models for medical scientific researc

Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures

Background. The use of patient-reported outcome measures (PROMS) is becoming increasingly important in healthcare. However, incorporation of PROMS into routine nephrological care is challenging. This study describes the first experience with PROMS in Dutch routine dialysis care.Methods. A pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMS at baseline and 3 and 6 months. PROMS consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients' views on using PROMS in clinical practice.Results. In total, 512 patients (36%) completed 908 PROMS (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1-3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial.Conclusions. The first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient-professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.Clinical epidemiolog

Itching in dialysis patients: impact on health-related quality of life and interactions with sleep problems and psychological symptoms-results from the RENINE/PROMs registry

Background Itching (pruritus) is common in dialysis patients, but little is known about its impact on health-related quality of life (HRQOL), sleep problems and psychological symptoms. This study investigates the impact of itching in dialysis patients by looking into the persistence of itching, the effect of itching on the course of HRQOL and the combined effect of itching with sleep problems and with psychological symptoms on HRQOL. Methods Data were obtained from the RENINE/PROMs registry and included 2978 dialysis patients who completed patient-reported outcome measures between 2018 and 2020. Itching, sleep problems and psychological symptoms were assessed with the Dialysis Symptom Index (DSI) and HRQOL with the 12-item Short Form Health Survey. Effects of itching on HRQOL and interactions with sleep problems and psychological symptoms were investigated cross-sectionally and longitudinally using linear regression and linear mixed models. Results Half of the patients experienced itching and in 70% of them, itching was persistent. Itching was associated with a lower physical and mental HRQOL {-3.35 [95% confidence interval (CI) -4.12 to -2.59) and -3.79 [95% CI -4.56 to -3.03]}. HRQOL remained stable during 2 years and trajectories did not differ between patients with or without itching. Sleep problems (70% versus 52%) and psychological symptoms (36% versus 19%) were more common in patients with itching. These symptoms had an additional negative effect on HRQOL but did not interact with itching. Conclusions The persistence of itching, its impact on HRQOL over time and the additional effect on HRQOL of sleep problems and psychological symptoms emphasize the need for recognition and effective treatment of itching to reduce symptom burden and improve HRQOL.Clinical epidemiolog

Implementation and use of patient-reported outcome measures in routine nephrology care

Healthcare is shifting towards a more person-centred approach, aiming at a personalised treatment that fits the patient’s preferences and needs⁠. The use of patient-reported outcome measures (PROMs) to systematically assess outcomes such as health-related quality of life and symptom burden can facilitate the process of adapting to what is important to the patient⁠. But, how to integrate PROMs into a routine care setting and how to use PROMs to achieve this personalised treatment? This dissertation provides insight into and practical knowledge of the implementation and use of PROMs in routine nephrology care⁠. Research was performed within the different steps for implementation of PROMs into routine care, including the selection of PROMs, pilot testing PROMs, and nationwide implementation and use of PROMs, using a broad variety of quantitative and qualitative research methods⁠. The use of PROMs was investigated both at individual patient level and at population level, with the potential to facilitate personalised treatment and evaluation of healthcare quality⁠. Patients and healthcare professionals considered the PROM-results relevant additional information in routine practice, complementary to traditional clinical measures⁠. In addition, discussing individual PROM results proved to be of great added value and directly applicable in routine care⁠.</p

Implementation and use of patient-reported outcome measures in routine nephrology care

Healthcare is shifting towards a more person-centred approach, aiming at a personalised treatment that fits the patient’s preferences and needs⁠. The use of patient-reported outcome measures (PROMs) to systematically assess outcomes such as health-related quality of life and symptom burden can facilitate the process of adapting to what is important to the patient⁠. But, how to integrate PROMs into a routine care setting and how to use PROMs to achieve this personalised treatment? This dissertation provides insight into and practical knowledge of the implementation and use of PROMs in routine nephrology care⁠. Research was performed within the different steps for implementation of PROMs into routine care, including the selection of PROMs, pilot testing PROMs, and nationwide implementation and use of PROMs, using a broad variety of quantitative and qualitative research methods⁠. The use of PROMs was investigated both at individual patient level and at population level, with the potential to facilitate personalised treatment and evaluation of healthcare quality⁠. Patients and healthcare professionals considered the PROM-results relevant additional information in routine practice, complementary to traditional clinical measures⁠. In addition, discussing individual PROM results proved to be of great added value and directly applicable in routine care⁠.</p

Exclusively breastfed overweight infants are at the same risk of childhood overweight as formula fed overweight infants

Several early life determinants play a role in childhood obesity. Rapid weight gain and overweight in infancy increases the risk while breast feeding seems to protect against childhood overweight. However, should we worry about exclusively breastfed overweight infants? The aim of the study is to examine the association of feeding type (exclusive breast feeding (EBF), formula feeding or mixed feeding) and overweight at the age of 6 months with the risk of overweight at the age of 5-6 years. The Amsterdam Born Children and their Development study is a large prospective population-based birth cohort study conducted in Amsterdam, the Netherlands. Children with complete information pertaining to feeding type and weight status at the age of 6 months and 5-6 years were included (N=3367). EBF was defined as receiving only breast feeding for at least 3 months. Overweight at the ages of 6 months and 5-6 years were defined by the WHO child growth standards and the International Obesity Task Force guidelines, respectively. The association of feeding type and overweight at 6 months with overweight at 5-6 years was assessed using logistic regression analyses. Overweight infants have a 4.10-fold (95% CI 2.91 to 5.78) higher odds of childhood overweight compared with those who were not overweight, independent of feeding type. EBF did not affect the association between infant overweight and childhood overweight. Overweight in infancy increases the odds of childhood overweight, equally for exclusively breastfed and formula fed infants. Overweight prevention should start before or at birth and applies to formula fed children as well as exclusively breastfed childre

National Comparison of Hospital Performances in Lung Cancer Surgery: The Role of Case Mix Adjustment

Surgical oncolog