{"doi":"10.3310/pgfar09100","title":"Long-term monitoring in primary care for chronic kidney disease and chronic heart failure: a multi-method research programme","abstract":"Background Long-term monitoring is important in chronic condition management. Despite considerable costs of monitoring, there is no or poor evidence on how, what and when to monitor. The aim of this study was to improve understanding, methods, evidence base and practice of clinical monitoring in primary care, focusing on two areas: chronic kidney disease and chronic heart failure. Objectives The research questions were as follows: does the choice of test affect better care while being affordable to the NHS? Can the number of tests used to manage individuals with early-stage kidney disease, and hence the costs, be reduced? Is it possible to monitor heart failure using a simple blood test? Can this be done using a rapid test in a general practitioner consultation? Would changes in the management of these conditions be acceptable to patients and carers? Design Various study designs were employed, including cohort, feasibility study, Clinical Practice Research Datalink analysis, seven systematic reviews, two qualitative studies, one cost-effectiveness analysis and one cost recommendation. Setting This study was set in UK primary care. Data sources Data were collected from study participants and sourced from UK general practice and hospital electronic health records, and worldwide literature. Participants The participants were NHS patients (Clinical Practice Research Datalink: 4.5 million patients), chronic kidney disease and chronic heart failure patients managed in primary care (including 750 participants in the cohort study) and primary care health professionals. Interventions The interventions were monitoring with blood and urine tests (for chronic kidney disease) and monitoring with blood tests and weight measurement (for chronic heart failure). Main outcome measures The main outcomes were the frequency, accuracy, utility, acceptability, costs and cost-effectiveness of monitoring. Results Chronic kidney disease: serum creatinine testing has increased steadily since 1997, with most results being normal (83% in 2013). Increases in tests of creatinine and proteinuria correspond to their introduction as indicators in the Quality and Outcomes Framework. The Chronic Kidney Disease Epidemiology Collaboration equation had 2.7% greater accuracy (95% confidence interval 1.6% to 3.8%) than the Modification of Diet in Renal Disease equation for estimating glomerular filtration rate. Estimated annual transition rates to the next chronic kidney disease stage are ≈ 2% for people with normal urine albumin, 3–5% for people with microalbuminuria (3–30 mg/mmol) and 3–12% for people with macroalbuminuria (> 30 mg/mmol). Variability in estimated glomerular filtration rate-creatinine leads to misclassification of chronic kidney disease stage in 12–15% of tests in primary care. Glycaemic-control and lipid-modifying drugs are associated with a 6% (95% confidence interval 2% to 10%) and 4% (95% confidence interval 0% to 8%) improvement in renal function, respectively. Neither estimated glomerular filtration rate-creatinine nor estimated glomerular filtration rate-Cystatin C have utility in predicting rate of kidney function change. Patients viewed phrases such as ‘kidney damage’ or ‘kidney failure’ as frightening, and the term ‘chronic’ was misinterpreted as serious. Diagnosis of asymptomatic conditions (chronic kidney disease) was difficult to understand, and primary care professionals often did not use ‘chronic kidney disease’ when managing patients at early stages. General practitioners relied on Clinical Commissioning Group or Quality and Outcomes Framework alerts rather than National Institute for Health and Care Excellence guidance for information. Cost-effectiveness modelling did not demonstrate a tangible benefit of monitoring kidney function to guide preventative treatments, except for individuals with an estimated glomerular filtration rate of 60–90 ml/minute/1.73 m 2 , aged < 70 years and without cardiovascular disease, where monitori","journal":"Programme Grants for Applied Research","year":2021,"id":196834,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":5,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9624,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2021-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":770044,"name":"Richard Stevens","orcid":"0000-0002-9258-4060","position":1,"is_corresponding":false},{"id":770045,"name":"Jeffrey K Aronson","orcid":"0000-0003-1139-655X","position":2,"is_corresponding":false},{"id":22963,"name":"Amitava Banerjee","orcid":"0000-0001-8741-3411","position":3,"is_corresponding":false},{"id":770046,"name":"Julie Evans","orcid":"0000-0002-7450-5744","position":4,"is_corresponding":false},{"id":770047,"name":"Benjamin G. Feakins","orcid":"0000-0002-3928-6750","position":5,"is_corresponding":false},{"id":424674,"name":"Susannah Fleming","orcid":"0000-0001-7205-2051","position":6,"is_corresponding":false},{"id":928,"name":"Paul Glasziou","orcid":"0000-0001-7564-073X","position":7,"is_corresponding":false},{"id":536765,"name":"Carl Heneghan","orcid":"0000-0002-1009-1992","position":8,"is_corresponding":false},{"id":40664,"name":"Richard Hobbs","orcid":"0000-0001-7976-7172","position":9,"is_corresponding":false},{"id":770048,"name":"Louise Jones","orcid":"0000-0002-0519-2334","position":10,"is_corresponding":false},{"id":770741,"name":"Milena Kurtinecz","orcid":null,"position":11,"is_corresponding":false},{"id":770049,"name":"Daniel Lasserson","orcid":"0000-0001-8274-5580","position":12,"is_corresponding":false},{"id":395135,"name":"Louise Locock","orcid":"0000-0002-8109-1930","position":13,"is_corresponding":false},{"id":770050,"name":"Julie McLellan","orcid":"0000-0002-2868-8631","position":14,"is_corresponding":false},{"id":50015,"name":"Borislava Mihaylova","orcid":"0000-0002-0951-1304","position":15,"is_corresponding":false},{"id":770051,"name":"Christopher A. 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Simons","orcid":"0000-0003-0822-7261","position":23,"is_corresponding":false},{"id":58239,"name":"Clare Taylor","orcid":"0000-0001-8926-2581","position":24,"is_corresponding":false},{"id":770058,"name":"Kathryn Taylor","orcid":"0000-0001-6589-5456","position":25,"is_corresponding":false},{"id":104053,"name":"Jan Y. 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