Dataset Information

Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM.

ABSTRACT:

Background

Patient experience is a recognized aspect of quality of care for people with chronic kidney disease (CKD), but current patient-reported experience measures (PREMs) only focus on dialysis care. We developed and validated the Kidney PREM to assess patients' experience with renal services in secondary care for any CKD stage or treatment (transplant, haemodialysis and peritoneal dialysis).

Methods

We developed the Kidney PREM in two phases, informed by a multidisciplinary expert group to ensure face validity. We organized three national data collections (2016-8) to investigate item response profiles and to conduct exploratory and confirmatory analyses to assess internal consistency. We also explored content validity in cognitive interviews and evaluated test-retest reliability. Finally, we developed the Kidney PREM Short Form for more frequent measurement of patient experience to inform local service improvements.

Results

We analysed 32 959 responses across data collections, with the 2018 collection covering all 71 UK renal centres. The Kidney PREM final version consisted of 38 items grouped into 13 themes, all pertaining to one underlying dimension reflecting the construct of 'patient experience' with high internal consistency (Cronbach's α = 0.94). The Kidney PREM Short Form consisted of 15 items across the same 13 themes.

Conclusions

The Kidney PREM supports the collection of reliable information on patient experience that people with CKD consider relevant, regardless of CKD stage or treatment modality. Kidney PREM data have the potential to guide local and national initiatives to improve patients' experiences with renal services in the UK and other countries.

SUBMITTER: Hawkins J

PROVIDER: S-EPMC9317163 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM.

Hawkins Janine J Wellsted David D Corps Claire C Fluck Richard R Gair Rachel R Hall Natalie N Busby Amanda A Rider Beth B Farrington Ken K Sharma Shivani S van der Veer Sabine N SN

Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association 20220701 8

<h4>Background</h4>Patient experience is a recognized aspect of quality of care for people with chronic kidney disease (CKD), but current patient-reported experience measures (PREMs) only focus on dialysis care. We developed and validated the Kidney PREM to assess patients' experience with renal services in secondary care for any CKD stage or treatment (transplant, haemodialysis and peritoneal dialysis).<h4>Methods</h4>We developed the Kidney PREM in two phases, informed by a multidisciplinary e ...[more]

PMID: 35138389

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Project description:ContextPatient-reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient-reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient perspectives and identify areas where patients may need additional support or interventions.ObjectiveThe aim of this study was to develop and evaluate content for the new 'My Hearing PREM', which captures lived experiences of hearing loss from patients' perspectives.DesignMy Hearing PREM was developed and tested in two key phases. Phase 1 involved generating the PREM prototype in accordance with our conceptual model of the lived experience of hearing loss. In Phase 2, cognitive interviews were conducted with adults with hearing loss to appraise the content of the PREM (relevance, clarity, acceptability and comprehensiveness) and assess its respondent burden. Key stakeholders (e.g., adults with hearing loss, patient and public representatives, clinicians and researchers) were consulted throughout Phases 1 and 2 to review and refine the PREM. Interview data were analysed using thematic analysis.Setting and participantsSixteen participants (aged 16 years and over) with hearing loss took part in cognitive interviews, recruited from UK audiology departments and non-clinical settings (e.g., lip-reading classes, national charity links and social media).ResultsMost PREM items were found to be relevant, clear, acceptable and comprehensive. Several problems were identified, including items not working well with the response scale options, irrelevant questions and a lack of clarity about terms (e.g., healthcare professionals) and whether questions should be answered based on the use of hearing aids (or not). The PREM was amended accordingly.ConclusionsCurrently, no hearing loss-specific PREMs exist in audiology. Involving multiple stakeholders in the development of the PREM helped to ensure that the items were relevant, clear, acceptable and comprehensive. The PREM is undergoing further evaluation and refinement in preparation for investigating the feasibility of implementing it into clinical practice.Patient or public contributionOngoing Patient and Public Involvement and Engagement (PPIE) with key groups (South Asian Women's groups, young people's groups, learning disability networks and student populations) was integral to the study. PPIE members reviewed patient information sheets and consent forms, advised on recruitment, reviewed the interview schedule and checked coding and analysis procedures. PPIE members provided feedback on the PREM's comprehensibility. Members of the public, including adults attending lip-reading classes and hearing aid users from the South Asian community, provided feedback on iterative PREM drafts.

Project description:ContextPatient-reported experience measures (PREMs) generate insights into daily challenges experienced when living with a chronic condition and experiences of care. There are no validated PREMs to measure the experience of hearing loss.ObjectiveThe aim of this study was to evaluate the psychometric properties of a newly developed tool, 'My Hearing PREM', designed to assess the experience of living with hearing loss and receiving audiology care.Setting and participantsAdults with hearing loss (n = 401) were recruited from audiology clinics in Scotland and England, and non-clinical routes such as lip-reading classes, clinical research networks, national charity links and social media.DesignParticipants completed a 27-item PREM alongside validated scales to measure communication difficulties, loneliness, quality of life, decisional conflict and health literacy. Modern (Rasch) and traditional psychometric analysis techniques (internal consistency and construct validity) were used to assess the psychometric properties of the My Hearing PREM.ResultsFactor analysis of the initial 27 items produced 3 subscales: Emotional Burden, Support and Communication, after 4 items were removed due to poor fit. Rasch analysis was carried out on each of these subscales and a further 7 items with poor fit to the Rasch model were removed. This resulted in a long-form 16-item (My Hearing PREM-16) demonstrating good internal reliability (Cronbach's α = 0.91). Each subscale showed good internal reliability (0.91, 0.85 and 0.71). A short-form (My Hearing PREM-9) version was developed for use in clinical practice (α = 0.79). Both forms of the PREM demonstrated medium to strong significant correlations with the validated measures.ConclusionBoth the My Hearing PREM-16 and My Hearing PREM-9 are reliable measures with good construct validity. They provide a way for healthcare professionals to understand how hearing loss is affecting an individual's emotional well-being, social interactions and communication. Ongoing research is exploring the feasibility of My Hearing PREM in routine audiology practice.Patient or public contributionWe developed the project in collaboration with members of the public who have lived experience of hearing loss, recruited through Aston University and volunteer networks connected to audiology services. Additionally, we engaged with individuals more likely to be impacted by hearing loss, including adults with learning disabilities, older adults in residential care, and members of South Asian communities (Bangladeshi, Indian and Pakistani). These stakeholders provided valuable feedback on the study's aims, the content and format of the My Hearing PREM items, the survey design and recruitment strategies.

Project description:BackgroundMobile health services are gradually being introduced to support patients' self-management of chronic conditions. The success of these services is contingent upon patients' continuous use of them.ObjectiveThis study aims to develop a model to measure the success of patients' continuous use of mobile health services for the self-management of chronic conditions.MethodsThe proposed model was derived from the information systems continuance model and the information systems success model. This model contains 7 theoretical constructs: information quality, system quality, service quality, perceived usefulness, user satisfaction, perceived health status, and continuous use intention. A web-based questionnaire survey instrument was developed to test the model. The survey was conducted to collect data from 129 patients who used a mobile health app for hypertension management from 2017 to 2019. The questionnaire items were derived from validated instruments and were measured using a 5-point Likert scale. The partial least squares modelling method was used to test the theoretical model.ResultsThe model accounted for 58.5% of the variance in perceived usefulness (R2=0.585), 52.3% of the variance in user satisfaction (R2=0.523), and 41.4% of the variance in patients' intention to make continuous use of mobile health services (R2=0.414). The continuous use intention was significantly influenced by their perceived health status (β=.195, P=.03), perceived usefulness (β=.307, P=.004), and user satisfaction (β=.254, P=.04) with the mobile health service. Information quality (β=.235, P=.005), system quality (β=.192, P=.02), and service quality (β=.494, P<.001) had a significantly positive influence on perceived usefulness but not on user satisfaction. Perceived usefulness had a significantly positive influence on user satisfaction (β=.664, P<.001). In a result opposite to the original hypothesis, perceived health status did not negatively influence patients' intention to continue using the mobile health service but showed a significantly positive correlation.ConclusionsThis study developed a theoretical model to predict and explain patients' continuous use of mobile health services for self-management of chronic conditions and empirically tested the model. Perceived usefulness, user satisfaction, and health status contributed to patients' intention to make continuous use of mobile health services for self-managing their chronic conditions.

Project description:BackgroundPatient centeredness is an integral part of the quality of care. Patient-reported experience measures (PREMs) are assumed to be an appropriate tool to assess patient-centredness. An evaluation of German-speaking PREMs is lacking.ObjectiveTo perform a systematic review and qualitative analysis of psychometric measurement qualities of German-language PREMs using for the first time a comprehensive framework of patient centredness.MethodsA systematic literature search was performed in Medline, PsycInfo, CINHAL, Embase, Cochrane database (last search 9th November 2021) for studies describing generic, surgery- or cancer care-specific PREMs. All questionnaires that were developed in or translated into German were included. The content of the included PREMs was evaluated using a comprehensive framework of patient centredness covering 16 domains. Baseline data of all PREM studies were extracted by two independent reviewers. Psychometric measurement qualities of the PREMs were assessed using current COSMIN guidelines.ResultsAfter removal of duplicates 3,457 abstracts were screened, of which 3,345 were excluded. The remaining 112 articles contained 51 PREMs, of which 12 were either developed in (4 PREMs) or translated into German (8 PREMs). Eight PREMs were generic (NORPEQ, PPE-15, PEACS, HCAHPS, QPPS, DUQUE, PEQ-G, Schoenfelder et al.), 4 cancer care-specific (EORTC IN-PATSAT32, PSCC-G, Danish National Cancer Questionnaire, SCCC) and none was surgery-specific. None of the PREMs covered all domains of patient-centeredness. Overall rating of structural validity was adequate only for PEACS and HCAHPS. High ratings for internal consistency were given for NORPEQ, Schoenfelder et al., PSCC-G and the SCCC. Cross-cultural validity for translated questionnaires was adequate only for the PSCC-G, while reliability was adequately assessed only for the EORTC IN-PATSAT32. Due to a lack of measurement gold standard and minimal important change, criterion validity and measurement invariance could not be assessed for any of the PREMs.ConclusionThis is the first systematic review using a comprehensive framework of patient centredness and shows that none of the included PREMs, even those translated from other languages into German, cover all aspects of patient centredness. Furthermore, all included PREMS show deficits in the results or evaluation of psychometric measurement properties. Nonetheless, based on the results, the EORTC IN-PATSAT32 and PSCC-G can be recommended for use in cancer patients in the German-language region, while the German versions of the HCAHPS, NORPEQ, PPE-15 and PEACS can be recommended as generic PREMs.Trial registrationRegistration. PROSPERO CRD42021276827.

Project description:ObjectiveTo provide an overview of existing instruments measuring patient-perceived quality of nursing care and to develop and psychometrically evaluate a new multidimensional scale applicable to the German acute care sector.DesignWe conducted a scale development and validation study involving the following phases: (1) performing a structured literature search to identify existing scales, (2) generating an initial pool of items using the results of the literature search and expert interviews, (3) coding/categorising the item pool, (4) organising a peer researcher workshop to select relevant items, (5) drafting the survey questionnaire and conducting cognitive pretesting, (6) pilot testing the survey questionnaire, (7) administering the survey to a large sample of hospital patients and (8) conducting a psychometric evaluation comprising exploratory factor analysis using the survey results, followed by confirmatory factor analysis and reliability and validity assessment of the resulting draft scale.Survey participants17 859 recently hospitalised patients discharged from non-intensive care in non-paediatric and non-psychiatric hospital units in Germany between May and October 2019.ResultsWe identified 32 instruments comprising 635 items on nursing care quality. Alongside 135 indicators derived from expert interviews, these formed our initial item pool, which we coded into 15 categories. From this pool, 36 items were selected in the peer researcher workshop for pretesting and psychometric evaluation. Based on the results of our exploratory and confirmatory factor analyses, we propose a second-order scale to measure Patients' Experience of Nursing Quality in Acute Hospitals (PENQuAH), including the two higher-order dimensions 'patients' perception of direct nursing care activities' and 'patients' perception of guidance provided by nurses'. The results of various tests suggest the scale has sufficient goodness of fit, reliability and validity.ConclusionsThe PENQuAH scale is promising in terms of its psychometric properties, the plausibility and meaningfulness of its dimensions, and its ease of use.

Dataset Information

Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM.

Background

Methods

Results

Conclusions

Publications

Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM.

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