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

Willik, Esmee M van der; Hemmelder, Marc H; Bart, Hans; Ittersum, Frans J. van; Akker, Judith M. Hoogendijk-van den; Bos, Willem Jan W; Dekker, Friedo W.; Meuleman, Yvette

doi:10.1093/ckj/sfz192

Cited by 59 publications

(91 citation statements)

References 46 publications

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“…Data on PROs (HRQOL and symptom burden), socio-demographic and clinical characteristics of patients receiving dialysis treatment were obtained from Renine, the Dutch renal registry (www.nefrovisie.nl/renine). For more information about the Dutch PROMs registry, see van der Willik et al 10,14…”

Section: Summary At a Glancementioning

confidence: 99%

“…The latter could be a concern when using PROs, since response rates rarely reach 100% in routine care ( Figure 3) and some people are more likely to participate than others, resulting in a reference standard that may not fully represent the population of interest. [10][11][12] Box 1 describes how this selective response may cause generalizability problems or even selection bias.…”

Section: Indicator Of Performancementioning

confidence: 99%

“…Especially in routine chronic and advanced care, response rates that reach 100% are very rarely achieved. [10][11][12] Obviously, lower response rates result in lower sample sizes and thus, less precision (as clearly visualized by the funnel-shaped control limits that narrow with larger sample sizes). Low response rates may be reasons for concern, especially for low-volume hospitals who already deal with power issues.…”

Section: General Interpretationmentioning

confidence: 99%

“…Low response rates may be reasons for concern, especially for low-volume hospitals who already deal with power issues. 18 However, the main problem of low response rates is the selective response: some people are more likely to participate than others, 10,19 which may result in generalizability problems and selection bias (see also Figure 3 and Table S1).…”

Section: General Interpretationmentioning

confidence: 99%

“…For example: the hospital rates depicted in are increasingly being implemented into routine care, including nephrological care. [10][11][12][13] Therefore, the logical next step is to include PROs-in addition to clinical outcomes-in the process of health-care quality evaluation. However, incorporation of PROs and using funnel plots for PROs is accompanied with additional challenges.…”

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confidence: 99%

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

et al. 2020

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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.

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Section: Summary At a Glancementioning

confidence: 99%

Section: Indicator Of Performancementioning

confidence: 99%

Section: General Interpretationmentioning

confidence: 99%

Section: General Interpretationmentioning

confidence: 99%

mentioning

confidence: 99%

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

et al. 2020

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The Personalized Priority and Progress Questionnaire (PPPQ): A personalized instrument for quality of life and self-management for use in clinical trials and practice

Tommel,

Cardol,

Evers

et al. 2023

Qual Life Res

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Purpose The aim of this study was to develop and validate a brief personalized instrument that (1) defines patients’ priorities for improvement, (2) measures progress in prioritized quality of life (QoL) and self-management outcomes, and (3) is applicable in both clinical practice and clinical trials. Methods The instrument was developed based on the literature on personalized assessment and patient priorities, feedback by clinicians, and six cognitive interviews with patients with chronic kidney disease. The resulting questionnaire, the Personalized Priority and Progress Questionnaire (PPPQ), contains a baseline and follow-op measurement. The baseline measurement assesses functioning on QoL (8 items) and self-management (5 items). The final item evaluates patients’ priorities for improvement. The follow-up measurement assesses progress in QoL and self-management. A personalized progress score can be calculated indicating the amount of progress on the QoL or self-management domain that is prioritized by the individual patient. Psychometric properties of the PPPQ were evaluated among patients with chronic kidney disease (n = 121) and patients with kidney failure treated with dialysis (n = 22). Results The PPPQ showed to be a feasible instrument that is easy and quick to complete. Regarding the construct validity, small to large correlations were found between the items and existing validated questionnaires measuring related constructs. Conclusion The PPPQ proved to be a feasible and valid instrument. The PPPQ can be adapted to match diverse populations and could be a useful tool both in clinical practice (e.g., to identify priorities and tailor treatment) and clinical trials (e.g., to evaluate the effectiveness of personalized interventions).

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Healthcare consumer acceptability of routine use of the EQ-5D-5L in clinical care: a cross-sectional survey

Snowdon,

Collyer,

Marsh

et al. 2024

Qual Life Res

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Purpose Patient reported outcome measures, such as the EQ-5D-5L, provide a measure of self-perceived health status or health-related quality of life. Understanding the consumer acceptability of a patient reported outcome measure can help to decide about its implementation across a healthcare organisation and possibly increase the likelihood of its use in clinical care. This study established the acceptability of the EQ-5D-5L from the perspective of clients receiving healthcare, and determined if acceptability varied by client sub-types. Methods A cross-sectional survey explored clients’ experience of the EQ-5D-5L. Eligible clients were aged ≥ 18 years and completed the EQ-5D-5L on admission and discharge to one of two multi-disciplinary community health services. Likert scale items explored acceptability, and open-ended questions determined if the EQ-5D-5L reflects experience of illness. Associations between acceptability and client characteristics were established using χ2 test. Open-ended questions were analysed using content analysis. Results Most of the 304 clients (mean age 70 years, SD 16) agreed that the EQ-5D-5L: was easy to use/understand (n = 301, 99%) and useful (n = 289, 95%); improved communication with their therapist (n = 275, 90%); and made them feel more in control of their health (n = 276, 91%). Most clients also agreed that they wished to continue using the EQ-5D-5L (n = 285, 93%). Clients aged ≥ 60 years reported lower acceptability. Clients noted that the EQ-5D-5L did not capture experience of illness related to fatigue, balance/falls, cognition, and sleep. Conclusion The EQ-5D-5L is acceptable for use in care but does not capture all aspects of health relevant to clients, and acceptability varies by subgroup.

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

Cited by 59 publications

References 46 publications

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

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

The Personalized Priority and Progress Questionnaire (PPPQ): A personalized instrument for quality of life and self-management for use in clinical trials and practice

Healthcare consumer acceptability of routine use of the EQ-5D-5L in clinical care: a cross-sectional survey

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