scholarly journals Primary and tertiary health professionals’ views on the health-care of patients with co-morbid diabetes and chronic kidney disease – a qualitative study

2016 ◽  
Vol 17 (1) ◽  
Author(s):  
Clement Lo ◽  
Dragan Ilic ◽  
Helena Teede ◽  
Greg Fulcher ◽  
Martin Gallagher ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Health Professionals

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

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.

Primary health care decision making in pre-dialysis chronic kidney disease

2017 ◽  
Vol 14 (4) ◽  
pp. 297-309
Author(s):  
Sandra Joan Campbell-Crofts ◽  
Janet Roden
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Primary Health Care ◽  
Kidney Disease ◽  
Qualitative Interviews ◽  
Correct Diagnosis ◽  
Primary Health Care System ◽  
Health Care Decisions ◽  
Primary Health ◽  
Kidney Health

Objectives This qualitative descriptive study explored the primary health care decisions of a group of 12 Australians in Stages 3B to 5 with chronic kidney disease in the preservation of kidney health. Methods Questioning within the qualitative interviews focused on gaining an understanding of the participants’ perceptions of their kidney health and the decisions made as a consequence of their interaction within the Australian primary health care system. Results Participants were dependent on their General Practitioner to recognise their symptoms, make the correct diagnosis and authorise the correct referral for specialist nephrology care. Three pathways in this process were identified: ‘easy’; ‘difficult’ and ‘protracted’. Clinician failure to correctly attribute symptoms to chronic kidney disease influenced the ‘difficult’ pathway, while failure to adequately communicate kidney health status influenced the ‘protracted’ pathway. Use of the language of ‘recovery’, ‘stability’ and ‘protection’ held meaning to the participants in gaining an understanding of their kidney health. Discussion Identifying pathways to diagnosis and referral can raise awareness of the challenges kidney health consumers face in their participation within the primary health care arena. Using consumer meaningful language improves the capacity of these consumers to engage in their own primary health care agenda.

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