scholarly journals Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study (Preprint)

2020 ◽  
Author(s):  
Glen James ◽  
Elisabeth Nyman ◽  
Marcy Fitz-Randolph ◽  
Anna Niklasson ◽  
Katarina Hedman ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Clinical Care ◽  
Study Patient ◽  
Retrospective Data ◽  
Data Set ◽  
Patient Reported ◽  
Key Concepts

BACKGROUND Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. OBJECTIVE The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. METHODS Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. RESULTS The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. CONCLUSIONS This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

scholarly journals Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

10.2196/18548 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e18548
Author(s):  
Glen James ◽  
Elisabeth Nyman ◽  
Marcy Fitz-Randolph ◽  
Anna Niklasson ◽  
Katarina Hedman ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Clinical Care ◽  
Study Patient ◽  
Retrospective Data ◽  
Data Set ◽  
Patient Reported ◽  
Key Concepts

Background Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. Results The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. Conclusions This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

scholarly journals The Perspectives of Patients on Health-Care for Co-Morbid Diabetes and Chronic Kidney Disease: A Qualitative Study

PLoS ONE ◽  
2016 ◽  
Vol 11 (1) ◽  
pp. e0146615 ◽  
Author(s):  
Clement Lo ◽  
Dragan Ilic ◽  
Helena Teede ◽  
Alan Cass ◽  
Greg Fulcher ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study

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

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

Risk Factor Identification, Classification and Prediction Summary of Chronic Kidney Disease

2020 ◽  
Vol 13 ◽  
Author(s):  
Pramila Arulanthu ◽  
Eswaran Perumal
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Disease Diagnosis ◽  
Medical Data ◽  
Machine Learning Algorithms ◽  
World Health ◽  
Medical Field ◽  
Data Set ◽  
Medical Issues ◽  
Health Organization

: The medical data has an enormous quantity of information. This data set requires effective classification for accurate prediction. Predicting medical issues is an extremely difficult task in which Chronic Kidney Disease (CKD) is one of the major unpredictable diseases in medical field. Perhaps certain medical experts do not have identical awareness and skill to solve the issues of their patients. Most of the medical experts may have underprivileged results on disease diagnosis of their patients. Sometimes patients may lose their life in nature. As per the Global Burden of Disease (GBD-2015) study, death by CKD was ranked 17th place and GBD-2010 report 27th among the causes of death globally. Death by CKD is constituted 2·9% of all death between the year 2010 and 2013 among people from 15 to 69 age. As per World Health Organization (WHO-2005) report, 58 million people expired by CKD. Hence, this article presents the state of art review on Chronic Kidney Disease (CKD) classification and prediction. Normally, advanced data mining techniques, fuzzy and machine learning algorithms are used to classify medical data and disease diagnosis. This study reviews and summarizes many classification techniques and disease diagnosis methods presented earlier. The main intention of this review is to point out and address some of the issues and complications of the existing methods. It is also attempts to discuss the limitations and accuracy level of the existing CKD classification and disease diagnosis methods.

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

2018 ◽  
Vol 21 (6) ◽  
pp. 1142-1149 ◽  
Author(s):  
Meghan J. Elliott ◽  
Joanna E. M. Sale ◽  
Zahra Goodarzi ◽  
Linda Wilhelm ◽  
Andreas Laupacis ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Priority Setting ◽  
Research Priorities ◽  
Disease Research ◽  
A Priority ◽  
Priority Setting Partnership

scholarly journals Patients’ and healthcare professionals’ beliefs, perceptions and needs towards chronic kidney disease self-management in China: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044059
Author(s):  
Hongxia Shen ◽  
Rianne M J J van der Kleij ◽  
Paul J M van der Boog ◽  
Wenjiao Wang ◽  
Xiaoyue Song ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Illness Perceptions ◽  
Chinese Patients ◽  
Self Management ◽  
Tertiary Referral Hospital ◽  
Chinese Context ◽  
Management Interventions

ObjectivesTo support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.DesignA basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.SettingOne major tertiary referral hospital in Henan province, China.Participants11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.ResultsFour themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.ConclusionsThe limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.

scholarly journals Perspectives and experiences of patients and healthcare professionals with geriatric assessment in chronic kidney disease: a qualitative study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Carlijn G. N. Voorend ◽  
Noeleen C. Berkhout-Byrne ◽  
Yvette Meuleman ◽  
Simon P. Mooijaart ◽  
Willem Jan W. Bos ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Qualitative Study ◽  
Clinical Outcomes ◽  
Geriatric Assessment ◽  
Clinical Care ◽  
Treatment Options ◽  
Routine Care ◽  
Treatment Team ◽  
Dutch Hospital ◽  
Additional Support

Abstract Background Older patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of standard clinical care, resulting in a missed opportunity to enhance (clinical) outcomes including quality of life in these patients. To develop routine geriatric assessment programs for patients approaching ESKD, it is crucial to understand patients’ and professionals’ experiences with and perspectives about the benefits, facilitators and barriers for geriatric assessment. Methods In this qualitative study, semi-structured focus group discussions were conducted with ESKD patients, caregivers and professionals. Participants were purposively sampled from three Dutch hospital-based study- and routine care initiatives involving geriatric assessment for (pre-)ESKD care. Transcripts were analysed inductively using thematic analysis. Results In six focus-groups, participants (n = 47) demonstrated four major themes: (1) Perceived characteristics of the older (pre)ESKD patient group. Patients and professionals recognized increased vulnerability and (cognitive) comorbidity, which is often unrelated to calendar age. Both believed that often patients are in need of additional support in various geriatric domains. (2) Experiences with geriatric assessment. Patients regarded the content and the time spent on the geriatric assessment predominantly positive. Professionals emphasized that assessment creates awareness among the whole treatment team for cognitive and social problems, shifting the focus from mainly somatic to multidimensional problems. Outcomes of geriatric assessment were observed to enhance a dialogue on suitability of treatment options, (re)adjust treatment and provide/seek additional (social) support. (3) Barriers and facilitators for implementation of geriatric assessment in routine care. Discussed barriers included lack of communication about goals and interpretation of geriatric assessment, burden for patients, illiteracy, and organizational aspects. Major facilitators are good multidisciplinary cooperation, involvement of geriatrics and multidisciplinary team meetings. (4) Desired characteristics of a suitable geriatric assessment concerned the scope and use of tests and timing of assessment. Conclusions Patients and professionals were positive about using geriatric assessment in routine nephrology care. Implementation seems achievable, once barriers are overcome and facilitators are endorsed. Geriatric assessment in routine care appears promising to improve (clinical) outcomes in patients approaching ESKD.

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