Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey

El-Damanawi, Ragada; Harris, Tess; Sandford, Richard; Karet, Fiona E.; Hiemstra, Thomas F.

doi:10.1093/ckj/sfw153

Cited by 6 publications

(2 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…PKD Charity and the PLRH have since successfully conducted an externally funded, randomised controlled feasibility trial (NCT02933268). Some of the feasibility work and the design of the trial are described in two joint publications [ 14 , 15 ]. Following this success, a second proposal from the PKD Charity focused on chronic pain interventions in PKD; a high priority for patients but unlikely to receive industry funding.…”

Section: Establishing the Patient Led Research Hubmentioning

confidence: 99%

Inverting the patient involvement paradigm: defining patient led research

et al. 2018

Self Cite

View full text Add to dashboard Cite

Plain English SummaryPatients usually understand their disease and lifestyle needs better than many medical professionals. They also have important ideas about what research would be most beneficial to their lives, especially on how to manage symptoms in a way that improves daily quality of life. In the UK, the National Institute for Health Research has recognised the value of patient insight, and now requires researchers with public funding to involve patients and the public throughout the research process. There are many opportunities for involvement, but these generally focus on improving study design to ensure the trial is acceptable to participants. Some programmes work towards setting research priorities as important to patients, public members, and medical experts, but due to the complexity and cost involved in running clinical trials, the majority of research originates with the pharmaceutical industry or academic institutions. There is a clear mismatch between research ideas that patients prioritise (quality of life), and those actually investigated (drug development).The Patient Led Research Hub (PLRH) is a new initiative hosted by the Cambridge Clinical Trials Unit. The PLRH supports research ideas as proposed by patient organisations, providing resources and expertise in research design and delivery. The PLRH aims to co-produce any technically feasible project, regardless of disease or symptom focus. The proposing patient group maintains ownership of the project with an active role in study management. This method of research has proven to produce credible research studies that are of direct relevance to patients.AbstractPatient and Public Involvement has become an indispensable and expected component of healthcare research in the United Kingdom, largely driven by the National Institute of Health Research and other research funders. Opportunities for patients to become involved in research abound, and many organisations now have dedicated ‘public involvement’ teams. However, its value is often questioned amidst criticism of tokenism and the recognition that a mismatch persists between patient priorities and funded research. Although patients are frequently consulted, evidence that their involvement influences the research agenda remains limited. We propose a novel model that allows patients and the public not only to propose research questions, but to design, initiate and deliver their own research with all the necessary support from research professionals. We demonstrate the feasibility and utility of this approach in reporting the establishment, experiences and progress of the Patient Led Research Hub. Using this resource, patient organisations are now able to initiate and conduct rigorous clinical research unfettered by the constraints of academic or economic agendas.

show abstract

Section: Establishing the Patient Led Research Hubmentioning

confidence: 99%

Inverting the patient involvement paradigm: defining patient led research

et al. 2018

Self Cite

View full text Add to dashboard Cite

show abstract

“…Until more information becomes available 44, 45 , moderate enhancement of hydration, spread out over the course of 24 hours, is recommended with the goal of maintaining an average urine osmolality of not more than 280 mOsm/L 27, 46 .…”

Section: Basic Renal Protective Measuresmentioning

confidence: 99%

Recent advances in the clinical management of autosomal dominant polycystic kidney disease

Torra

2019

F1000Res

View full text Add to dashboard Cite

Autosomal dominant polycystic kidney disease (ADPKD) is a genetic systemic disorder causing the development of renal and hepatic cysts and decline in renal function. It affects around 1 in 1,000 live births. Early hypertension and progressive renal failure due to massive enlargement of cysts and fibrosis are hallmarks of the disease. This article reviews recent advances in ADPKD and focuses mainly on diagnosis, management, and prediction of the course of the disease.

show abstract

Nutritional therapy in autosomal dominant polycystic kidney disease

et al. 2018

View full text Add to dashboard Cite

CKD-related nutritional therapy (NT) is a crucial cornerstone of CKD patients' treatment, but the role of NT has not been clearly investigated in autosomal dominant polycystic kidney disease (ADPKD). Several clinical studies have focused on new pharmacological approaches to delay cystic disease progression, but there are no data on dietary interventions in ADPKD patients. The aim of this paper is to analyze the evidence from the literature on the impact of five nutritional aspects (water, sodium, phosphorus, protein intake, and net acid load) in CKD-related ADPKD extrapolating-where information is unavailable-from what occurs in CKD non-ADPKD patients Sodium intake restriction could be useful in decreasing the growth rate of cysts. Although further evidence is needed, restriction of phosphorus and protein intake restriction represent cornerstones of the dietary support of renal non-ADPKD patients and common sense can guide their use. It could be also helpful to limit animal protein, increasing fruit and vegetables intake together with a full correction of metabolic acidosis. Finally, fluid intake may be recommended in the early stages of the disease, although it is not to be prescribed in the presence of moderate to severe reduction of renal function.

show abstract

Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey

Cited by 6 publications

References 19 publications

Inverting the patient involvement paradigm: defining patient led research

Inverting the patient involvement paradigm: defining patient led research

Recent advances in the clinical management of autosomal dominant polycystic kidney disease

Nutritional therapy in autosomal dominant polycystic kidney disease

Contact Info

Product

Resources

About