Perceived Significance of Engagement in Research Prioritization Among Chronic Kidney Disease Patients, Caregivers, and Health Care Professionals: A Qualitative Study

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.

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THE LIVED EXPERIENCE OF PATIENTS WITH PRE-DIALYSIS CHRONIC KIDNEY DISEASE: A QUALITATIVE STUDY

Belitung Nursing Journal ◽

10.33546/bnj.409 ◽

2018 ◽

Vol 4 (2) ◽

pp. 263-270

Author(s):

Tri Hapsari Retno Agustiyowati ◽

Ratna Sitorus ◽

Agung Waluyo ◽

Besral Besral

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

Lived Experience ◽

Health Care Professionals ◽

Activity Patterns ◽

Behavioral Adaptation ◽

Coping Mechanism ◽

Descriptive Phenomenology ◽

Spiritual Problems

Background: Chronic kidney disease is identified as kidney damage for more than three months with glomerulus filtration rate less than 60ml / min / 1.73 m2.Objective: This study aims to explore the experience of life of patients with pre-dialysis chronic kidney disease used Roy’s adaptation model.Methods: This study was a qualitative study using descriptive phenomenology approach in the General Hospital of Cibabat Cimahi West Java, Indonesia. Data were obtained with depth interviews involved eight participants with pre-dialysis chronic kidney disease consisting of two men and six women, aged ranged from 35 to 65 years. The years living with chronic kidney disease ranged from 1 to 2 years. Data were analyzed using Colaizzi’s methods. Results: We found nine themes, namely: physical stimulus, psychic stimulus, socio-economic stimulus, physical coping mechanisms to control the situation, a coping mechanism to maintain health function, selecting behavioral adaptation physiology, selecting a behavior adaptation of the self-concept, selecting adaptation behaviors role function, and selecting behavioral adaptation interdependence. Conclusion: It can be concluded that the experience of patients with pre-dialysis chronic kidney disease complained physical, psychological, social, economic, and spiritual problems. Therefore, health care professionals need to design an intervention to improve patients’ coping mechanism to maintain kidney function, and adapt to diet for foods and drinks, activity patterns and roles according to their conditions, which also elaborate the function of family support.

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

Journal of Medical Internet Research ◽

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.

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

PLoS ONE ◽

10.1371/journal.pone.0146615 ◽

2016 ◽

Vol 11 (1) ◽

pp. e0146615 ◽

Cited By ~ 16

Author(s):

Clement Lo ◽

Dragan Ilic ◽

Helena Teede ◽

Alan Cass ◽

Greg Fulcher ◽

...

Keyword(s):

Health Care ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study

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

Health Expectations ◽

10.1111/hex.12818 ◽

2018 ◽

Vol 21 (6) ◽

pp. 1142-1149 ◽

Cited By ~ 3

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

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

BMJ Open ◽

10.1136/bmjopen-2020-044059 ◽

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.

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The Psychosocial and Somatic Effects of Relocation from Remote Canadian First Nation Communities to Urban Centres on Indigenous Peoples with Chronic Kidney Disease (CKD)

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18073838 ◽

2021 ◽

Vol 18 (7) ◽

pp. 3838

Author(s):

Denise Genereux ◽

Lida Fan ◽

Keith Brownlee

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Indigenous Peoples ◽

Health Care Professionals ◽

Medical Condition ◽

Geographical Location ◽

Well Being ◽

First Nation ◽

Urban Centre ◽

The Impact

Chronic kidney disease, also referred to as end-stage renal disease (ESRD), is a prevalent and chronic condition for which treatment is necessary as a means of survival once affected individuals reach the fifth and final stage of the disease. Dialysis is a form of maintenance treatment that aids with kidney functioning once a normal kidney is damaged. There are two main types of dialysis: hemodialysis (HD) and peritoneal dialysis (PD). Each form of treatment is discussed between the patient and nephrologist and is largely dependent upon the following factors: medical condition, ability to administer treatment, supports, geographical location, access to necessary equipment/supplies, personal wishes, etc. For Indigenous Peoples who reside on remote Canadian First Nation communities, relocation is often recommended due to geographical location and limited access to both health care professionals and necessary equipment/supplies (i.e., quality of water, access to electricity/plumbing, etc). Consequently, the objective of this paper is to determine the psychosocial and somatic effects for Indigenous Peoples with ESRD if they have to relocate from remote First Nation communities to an urban centre. A review of the literature suggests that relocation to urban centres has negative implications that are worth noting: cultural isolation, alienation from family and friends, somatic issues, psychosocial issues, loss of independence and role adjustment. As a result of relocation, it is evident that the impact is profound in terms of an individuals’ mental, emotional, physical and spiritual well-being. Ensuring that adequate social support and education are available to patients and families would aid in alleviating stressors associated with managing chronic kidney disease.

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