Long-term views on chronic kidney disease research priorities among stakeholders engaged in a priority-setting partnership: A qualitative study

Abstract Background Osteogenesis imperfecta, fibrous dysplasia/McCune-Albright syndrome and X-linked hypophosphatemia are three rare musculoskeletal diseases characterised by bone deformities, frequent fractures and pain. Little high-quality research exists on appropriate treatment and long-term management of these conditions in adults. This is further worsened by limited research funding in rare diseases and a general mismatch between the existing research priorities and those of the patients. This partnership adopted the James Lind Alliance approach to identify the top 10 research priorities for rare musculoskeletal diseases in adults through joint patient, carer and healthcare professional collaboration. Results The initial survey for question collection recruited 198 respondents, submitting a total of 988 questions. 77% of the respondents were patients with a rare musculoskeletal disease. Following out-of-scope question exclusion, repeating query grouping and scientific literature check for answers, 39 questions on treatment and long-term management remained. In the second public survey, 220 respondents, of whom 85% were patients with a rare musculoskeletal disease, their carers, relatives or friends, prioritised these uncertainties, which allowed selection of the top 25. In the last stage, patients, carers and healthcare professionals gathered for a priority setting workshop to reach a consensus on the final top 10 research priorities. These focus on the uncertainties surrounding appropriate treatment and holistic long-term disease management, highlighting several aspects indirect to abnormal bone metabolism, such as extra-skeletal symptoms, psychological care of both patients and their families and disease course through ageing. Conclusions This James Lind Alliance priority setting partnership is the first to investigate rare bone diseases. The priorities identified here were developed jointly by patients, carers and healthcare professionals. We encourage researchers, funding bodies and other stakeholders to use these priorities in guiding future research for those affected by rare musculoskeletal disorders.

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Rare musculoskeletal diseases in adults: a research priority setting partnership with The James Lind Alliance

10.21203/rs.3.rs-20724/v1 ◽

2020 ◽

Author(s):

Gerda Mickute ◽

Kristina Staley ◽

Heather Delaney ◽

Oliver Gardiner ◽

Amy Hunter ◽

...

Keyword(s):

Priority Setting ◽

Healthcare Professionals ◽

Musculoskeletal Diseases ◽

Research Priorities ◽

Musculoskeletal Disease ◽

Appropriate Treatment ◽

James Lind Alliance ◽

Priority Setting Partnership ◽

Term Management

Abstract Background: Osteogenesis imperfecta, fibrous dysplasia/McCune-Albright syndrome and X-linked hypophosphatemia are three rare musculoskeletal diseases characterised by bone deformities, frequent fractures and pain. Little high-quality research exists on appropriate treatment and long-term management of these conditions in adults. This is further worsened by limited research funding in rare diseases and a general mismatch between the existing research priorities and those of the patients. This partnership adopted the James Lind Alliance approach to identify the top 10 research priorities for rare musculoskeletal diseases in adults through joint patient, carer and healthcare professional collaboration. Results: The initial survey for question collection recruited 198 respondents, submitting a total of 988 questions. 77% of the respondents were patients with a rare musculoskeletal disease. Following out-of-scope question exclusion, repeating query grouping and scientific literature check for answers, 39 questions on treatment and long-term management remained. In the second public survey, 220 respondents, of whom 85% were patients with a rare musculoskeletal disease, their carers, relatives or friends, prioritised these uncertainties, which allowed selection of the top 25. In the last stage, patients, carers and healthcare professionals gathered for a priority setting workshop to reach a consensus on the final top 10 research priorities. These focus on the uncertainties surrounding appropriate treatment and holistic long-term disease management, highlighting several aspects indirect to abnormal bone metabolism, such as extra-skeletal symptoms, psychological care of both patients and their families and disease course through ageing. Conclusions: This James Lind Alliance priority setting partnership is the first to investigate rare bone diseases. The priorities identified here were developed jointly by patients, carers and healthcare professionals. We encourage researchers, funding bodies and other stakeholders to use these priorities in guiding future research for those affected by rare musculoskeletal disorders.

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A Priority Setting Partnership to Identify Research Priorities for Expectant Families and Those With Children to Age 24 Months: The Family Research Agenda Initiative Setting (FRAISE) Project

SSRN Electronic Journal ◽

10.2139/ssrn.3736151 ◽

2020 ◽

Author(s):

Meredith Lee Brockway ◽

Elizabeth Morgan Keys ◽

K.S. Bright ◽

Carla Ginn ◽

J. Wilson ◽

...

Keyword(s):

Priority Setting ◽

Research Agenda ◽

Research Priorities ◽

Family Research ◽

The Family ◽

A Priority ◽

Priority Setting Partnership

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EFFECTIVENESS OF ANTIAGGREGANT THERAPY ON KIDNEY ACTIVITY IN THE PREDIALYSIS STAGE OF CHRONIC KIDNEY DISEASE

UZBEK MEDICAL JOURNAL ◽

10.26739/2181-0664-2020-6-9 ◽

2020 ◽

Vol 6 (1) ◽

pp. 55-60

Author(s):

Khabib Barnoev ◽

◽

Sherali Toshpulatov ◽

Nozima Babajanova ◽

Keyword(s):

Chronic Kidney Disease ◽

Renal Function ◽

Kidney Disease ◽

Comparative Study ◽

Functional Status ◽

Stage Ii ◽

Term Administration ◽

Antiaggregant Therapy

The article presents the results of a study to evaluate the effectiveness of antiaggregant therapy on the functional status of the kidneys in 115 patients with stage II and III chronic kidney disease on the basis of a comparative study of dipyridamole and allthrombosepin. Studies have shown that long-term administration of allthrombosepin to patients has led to improved renal function.

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ASSESSMENT OF KIDNEY FUNCTIONAL RESERVE ON THE BACKGROUND OF ANTI-AGGREGATE THERAPY IN CHRONIC KIDNEY DISEASE II-III STAGE

UZBEK MEDICAL JOURNAL ◽

10.26739/2181-0664-2020-6-8 ◽

2020 ◽

Vol 6 (1) ◽

pp. 49-54

Author(s):

Khabib Barnoev ◽

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Comparative Study ◽

Early Stage ◽

Raw Material ◽

Functional Reserve ◽

Functional Reserves ◽

Term Administration ◽

Antiaggregant Therapy

The article presents the results of a study to assess the functional reserve of the kidneys against the background of a comparative study of antiaggregant therapy dipyridamole and allthrombosepin in 50 patients with a relatively early stage of chronic kidney disease. Studies have shown that long-term administration of allthrombosepin to patients has resulted in better maintenance of kidney functional reserves. Therefore, our research has once again confirmed that diphtheridamol, which is widely used as an antiaggregant drug in chronic kidney disease, does not lag behind the domestic raw material allthrombosepin

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Exploring Patients' Experiences After Chronic Kidney Disease Diagnosis: A Qualitative Study

Nephrology Nursing Journal ◽

10.37526/1526-744x.2020.47.1.67 ◽

2020 ◽

Vol 47 (1) ◽

pp. 67

Author(s):

Areti Stavropoulou ◽

Michael Rovithis ◽

Maria G. Grammatikopoulou ◽

Konstantina Kyriakidi ◽

Andriani Pylarinou ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

Disease Diagnosis

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Kidney Microstructural Features at the Time of Donation Predict Long-term Risk of Chronic Kidney Disease in Living Kidney Donors

Mayo Clinic Proceedings ◽

10.1016/j.mayocp.2020.08.041 ◽

2021 ◽

Vol 96 (1) ◽

pp. 40-51 ◽

Cited By ~ 1

Author(s):

Massini A. Merzkani ◽

Aleksandar Denic ◽

Ramya Narasimhan ◽

Camden L. Lopez ◽

Joseph J. Larson ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Kidney Donors ◽

Living Kidney Donors

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Postoperative acute kidney injury in adult non-cardiac surgery: joint consensus report of the Acute Disease Quality Initiative and PeriOperative Quality Initiative

Nature Reviews Nephrology ◽

10.1038/s41581-021-00418-2 ◽

2021 ◽

Author(s):

John R. Prowle ◽

Lui G. Forni ◽

Max Bell ◽

Michelle S. Chew ◽

Mark Edwards ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Acute Kidney Injury ◽

Cardiac Surgery ◽

Kidney Disease ◽

Kidney Injury ◽

Adverse Outcomes ◽

Baseline Risk ◽

Major Surgery ◽

Increased Risk

AbstractPostoperative acute kidney injury (PO-AKI) is a common complication of major surgery that is strongly associated with short-term surgical complications and long-term adverse outcomes, including increased risk of chronic kidney disease, cardiovascular events and death. Risk factors for PO-AKI include older age and comorbid diseases such as chronic kidney disease and diabetes mellitus. PO-AKI is best defined as AKI occurring within 7 days of an operative intervention using the Kidney Disease Improving Global Outcomes (KDIGO) definition of AKI; however, additional prognostic information may be gained from detailed clinical assessment and other diagnostic investigations in the form of a focused kidney health assessment (KHA). Prevention of PO-AKI is largely based on identification of high baseline risk, monitoring and reduction of nephrotoxic insults, whereas treatment involves the application of a bundle of interventions to avoid secondary kidney injury and mitigate the severity of AKI. As PO-AKI is strongly associated with long-term adverse outcomes, some form of follow-up KHA is essential; however, the form and location of this will be dictated by the nature and severity of the AKI. In this Consensus Statement, we provide graded recommendations for AKI after non-cardiac surgery and highlight priorities for future research.

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