Information Topics Important to Chronic Kidney Disease Patients: A Systematic Review

Ormandy, Paula

doi:10.1111/j.1755-6686.2008.00006.x

Cited by 37 publications

(58 citation statements)

References 15 publications

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“…These content areas included the functions of the kidney, treatment options for kidney failure, signs and symptoms of disease progression, medications of potential benefit or harm to the kidney, blood pressure targets, and other topics important to preserving kidney function. We conducted a content review of kidney knowledge questionnaires,18–19, 21, 32–37 patient perspectives on disease specific information needs,14, 22–25, 38–42 and convened experts in various areas of kidney disease care, including nephrologists (3), nurses (3), dieticians (2), research personnel (6), and a kidney disease educator (1). In addition, we solicited methodological input from experts (3) in health literacy, scale validation, and psychometric analysis.…”

Section: Methodsmentioning

confidence: 99%

Development and Results of a Kidney Disease Knowledge Survey Given to Patients With CKD

Wright

Wallston

Elasy

et al. 2011

American Journal of Kidney Diseases

175

214

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Background Little is known about disease specific knowledge in patients with chronic kidney disease (CKD). We developed and examined the results of a survey to characterize kidney disease knowledge. Design Survey about kidney disease knowledge, with questions developed by experts. Setting and Participants: 401 adult patients with CKD (Stages 1–5) attending a nephrology clinic from April to October 2009. Outcomes & Measurements We calculated survey reliability using the Kuder-Richardson-20 coefficient, and established construct validity by testing a priori hypotheses of associations between the survey and patient characteristics. We descriptively analyzed survey responses and applied linear regression analyses to evaluate associations with patient characteristics. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine. Results Participants median age was 58 (25th-75th percentile, 46–68) years, 83% were White, 18% had limited literacy, and 77% had CKD Stages 3–5. The 28 question knowledge survey had good reliability (KR-20=0.72), and mean (SD) knowledge score was 66% (15%). In support of construct validity of our knowledge survey, bivariate analysis shows that scores are associated with age (β, −0.01 per ten years; 95% CI, −0.02–−0.005; p=0.003), formal education (β, 0.09; 95% CI, 0.03–0.15; p=0.004), health literacy (β, 0.06; 95% CI, 0.03–0.10; p=0.001), kidney education class participation (β, 0.05; 95% CI, 0.01–0.09; p=0.009), knowing someone else with CKD (β, 0.05; 95% CI, 0.02–0.08; p=0.001), and awareness of one’s own CKD diagnosis (β, 0.07; 95% CI, 0.04–0.10; p<0.001). Findings were similar in adjusted analyses. Limitations Recruitment from one clinic limits generalizabilty of findings. Conclusions For patients with CKD, this kidney disease knowledge survey (KiKS) is reliable and valid, and identifies areas of and risk factors for poor kidney knowledge. Further study is needed to determine the impact of CKD knowledge on self-care behaviors and clinical outcomes.

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Section: Methodsmentioning

confidence: 99%

Development and Results of a Kidney Disease Knowledge Survey Given to Patients With CKD

Wright

Wallston

Elasy

et al. 2011

American Journal of Kidney Diseases

175

214

View full text Add to dashboard Cite

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“…Engaging in this level of self-management is arduous and requires support, however, not all individuals desire the same kind or level of assistance [1]. Despite this, people with CKD are rarely consulted regarding the support that they desire in order to effectively manage their condition [2].…”

Section: Introductionmentioning

confidence: 99%

Person-centred care in chronic kidney disease: a cross-sectional study of patients’ desires for self-management support

Douglas

Bonner

2017

BMC Nephrol

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BackgroundPeople with chronic kidney disease (CKD) must self-manage their illness to assist with slowing disease-progression, but this is a complex task requiring support from healthcare professionals. Despite the established importance of person-centred care, people with CKD are rarely consulted regarding their desires for self-management support (SMS).MethodsA cross-sectional survey was conducted face-to-face in a Queensland primary care clinic and distributed Australia-wide via an online interface promoted by Kidney Health Australia during 2015. Participants were ≥18 years old and had a self-reported doctor’s diagnosis of CKD (any stage; N = 97). The survey was based upon existent literature which identified 10 areas that those with CKD believe require additional support. Descriptive data were generated and Mann-Whitney U tests were performed to compare the desires of different groups of participants.ResultsOf the 97 participants, 36 completed a hardcopy survey in clinic, and 61 completed the online version. Just over half (60.8%) were female, age ranged from 16–89 (M = 56.44), and time since diagnosis ranged from just diagnosed to 60 years (Mdn = 8.08 years). Strong interest in receiving additional support across all 10 areas was reported (Mdns = 8.00–10.00), with “keeping a positive attitude and taking care of mental and physical health” receiving the highest rating. Those who were: younger (p < .001); more highly educated (p < .001); working (p < .001); diagnosed longer ago (p = .015); and women (p = .050) expressed stronger overall desire for additional support.ConclusionsIn addition to information about CKD and medications, everyday strategies ought to be prioritised in patient education. Varying levels of engagement and eagerness to learn more about self-management highlight the need for a person-centred approach to SMS.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-016-0416-2) contains supplementary material, which is available to authorized users.

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“…The various forms of dialysis and transplantation differ not only in their impacts on patients’ future survival and quality of life [1-4], but also in important characteristics which could influence patients’ preferences, including treatment invasiveness [3,5], length of time for treatment delivery [5], and treatment requirements for self-care or family involvement [3]. Despite this, evidence suggests patients are often not fully informed about the availability of various RRT options or how these options differ from one another, even when initiated under the routine care of nephrologists [6-8].…”

Section: Introductionmentioning

confidence: 99%

Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study

et al. 2013

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BackgroundLittle is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions.MethodsIn 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients’ RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback.ResultsTen groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients’ psychological well-being and finances. Views of African American and non-African American participants were largely similar.ConclusionsEducational resources addressing the influence of RRT selection on patients’ morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients’ personal relationships and finances could enhance resources’ cultural relevance for African Americans.

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Information Topics Important to Chronic Kidney Disease Patients: A Systematic Review

Cited by 37 publications

References 15 publications

Development and Results of a Kidney Disease Knowledge Survey Given to Patients With CKD

Development and Results of a Kidney Disease Knowledge Survey Given to Patients With CKD

Person-centred care in chronic kidney disease: a cross-sectional study of patients’ desires for self-management support

Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study

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