Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease

O’Hare, Ann M.; Richards, Claire; Szarka, Jackie; McFarland, Lynne V.; Showalter, Whitney; Vig, Elizabeth K.; Sudore, Rebecca L.; Crowley, Susan T.; Trivedi, Ranak; Taylor, Janelle S.

doi:10.2215/cjn.14261217

Cited by 20 publications

(13 citation statements)

References 44 publications

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“…To the best of our knowledge, this study represents the first pilot randomized trial of a video decision aid on knowledge of supportive kidney care. The landscape of care for older and frail patients with advanced CKD has changed to prioritize shared decision-making, quality of life, and better transitions of care at the end of life [50][51][52]. Our trial demonstrated that knowledge of supportive kidney care improved significantly among participants regardless of the educational intervention -this only enriches shared decision-making.…”

Section: Discussionmentioning

confidence: 75%

Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial

et al. 2020

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Background: There are few studies of patient-facing decision aids that include supportive kidney care as an option. We tested the efficacy of a video decision aid on knowledge of supportive kidney care among older patients with advanced CKD. Methods: Participants (age ≥ 65 years with advanced CKD) were randomized to receive verbal or video education. Primary outcome was knowledge of supportive kidney care (score range 0-3). Secondary outcomes included preference for supportive kidney care, and satisfaction and acceptability of the video. Results: Among all participants (n = 100), knowledge of supportive kidney care increased significantly after receiving education (p < 0.01); however, there was no difference between study arms (p = 0.68). There was no difference in preference for supportive kidney care between study arms (p = 0.49). In adjusted analyses, total health literacy score (aOR 1.08 [95% CI: 1.003-1.165]) and nephrologists' answer of "No" to the Surprise Question (aOR 4.87 [95% CI: 1.22-19.43]) were associated with preference for supportive kidney care. Most felt comfortable watching the video (96%), felt the content was helpful (96%), and would recommend the video to others (96%). Conclusions: Among older patients with advanced CKD, we did not detect Randomized Clinical Trial 737

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Section: Discussionmentioning

confidence: 75%

Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial

et al. 2020

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“…Because our study relied on patientreported difficulty with adherence by social worker assessment, the length and quality of the relationship between social worker and patient (which are likely to be short and low at the initial assessment at the clinic), or problems with general mistrust of the medical system, could affect patient responses. 18 In addition, social desirability bias could cause patients to underreport difficulty in adherence, with the hope of being viewed favorably by the social worker. 19 Importantly, patients only reported difficulty with adherence to recommendations, and it is possible that patients are non-adherent for reasons other than finding them difficult.…”

Section: Discussionmentioning

confidence: 99%

<p>Association of Patient-Reported Difficulty with Adherence with Achievement of Clinical Targets Among Hemodialysis Patients</p>

Snyder¹,

Jaar²,

Lea³

et al. 2020

PPA

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Background: Non-adherence to dialysis recommendations is common and associated with poor outcomes. We used data from a cohort of in-center hemodialysis patients to determine whether patients' reported difficulties with adherence were associated with achievement of clinical targets for treatment recommendations. Patients and Methods: We included 799 in-center patients receiving hemodialysis from February 2010 to October 2016 at Emory Dialysis (Atlanta, GA, USA). Patient-reported difficulty with adherence (yes vs no) across multiple domains (coming to dialysis, completing dialysis sessions, fluid restrictions, diet restrictions, taking medications) was obtained from baseline social worker assessments. Achievement of clinical targets for coming to dialysis (missing ≥3 expected sessions), completing dialysis sessions (shortening >3 sessions by ≥15 min), fluid restrictions (mean interdialytic weight gain ≥3 kg), diet restrictions (mean potassium ≥5.0 mEq/L, mean phosphate >5.5 mg/dL), and taking medications (mean phosphate >5.5 mg/dL) was estimated over the following 12 weeks, using electronic medical record data. Crude agreement was assessed, and multivariable logistic regression was used to estimate the associations between these measures. Results: Agreement between reported difficulty in adherence and failure to achieve clinical targets was generally poor across all domains (percent agreement: 52.9-65.3%). After adjustment, patients reporting difficulty with fluid restrictions were 62% more likely to have mean interdialytic weight gain ≥3 kg than those not reporting difficulty (OR: 1.62, 95% CI: 1.08, 2.43). Patients reporting difficulty with coming to dialysis were 41% more likely to miss ≥3 expected dialysis sessions over 12 weeks (OR: 1.41, 95% CI: 0.96, 2.07); however, this association was not statistically significant. There were no significant associations between reported difficulty and failure to achieve clinical targets in other categories. Conclusion: While reported difficulty with only fluid restrictions and coming to dialysis were associated with failure to achieve clinical targets in our study, the general lack of agreement between reported difficulty with adherence and failure to achieve clinical targets highlights a gap that could be explored to develop and target educational interventions aimed at increasing adherence among dialysis patients.

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“… 62 , 65 - 67 There is a large emotional toll associated with having CKD, especially when it comes to deciding on and initiating dialysis. 38 , 49 , 68 Anxiety, depression, and the emotional impact of dialysis are additional patient quality metrics that must be incorporated into CKD guidelines as they have been shown to predict patient morbidity, mortality, and QOL. 62 Psychologists are considered an essential part of any multidisciplinary RRT educational program.…”

Section: Reviewmentioning

confidence: 99%

“… 47 Therefore, it is important to ask what CKD means to them, how it has affected their lifestyle and family, and what support structures they have. 47 , 68 …”

Section: Reviewmentioning

confidence: 99%

Barriers to Education and Shared Decision Making in the Chronic Kidney Disease Population: A Narrative Review

Cassidy

Getchell²,

Harwood

et al. 2018

Can J Kidney Health Dis

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Purpose of review:Provision of education to inform decision making for renal replacement therapy (RRT) is a key component in the management of chronic kidney disease (CKD), yet patients report suboptimal satisfaction with the process of selecting a dialysis modality. Our purpose is to review the influencers of RRT decision making in the CKD population, which will better inform the process of shared decision making between clinicians and patients.Sources of information:PubMed and Google Scholar.Methods:A narrative review was performed using the main terms “chronic kidney disease,” “CKD,” “dialysis,” “review,” “decision-making,” “decision aids,” “education,” and “barriers.” Only articles in English were accessed. The existing literature was critically analyzed from a theoretical and contextual perspective and thematic analysis was performed.Key findings:Eight common themes were identified as influencers for decision making. “Patient-focused” themes including social influence, values and beliefs, comprehension, autonomy and sociodemographics, and “clinician-focused” themes including screening, communication, and engagement. Early predialysis education and decision aids can effectively improve decision making. Patient-valued outcomes need to be more fully integrated into clinical guidelines.Limitations:This is not a systematic review; therefore, no formal tool was utilized to evaluate the rigor and quality of studies included and findings may not be generalizable.Implications:Standardized comprehensive RRT education programs through multidisciplinary health teams can help optimize CKD patient education and shared decision making. Involving patients in the research process itself and implementing patient values and preferences into clinical guidelines can help to achieve a patient-centered model of care.

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Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease

Abstract: Interactions with individual providers and with the wider health system coupled with patients' own struggles to make meaning of their illness can take a large emotional toll. A deeper appreciation of patients' emotional experiences may offer important opportunities to improve care.

Cited by 20 publications

References 44 publications

Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial

Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial

<p>Association of Patient-Reported Difficulty with Adherence with Achievement of Clinical Targets Among Hemodialysis Patients</p>

Barriers to Education and Shared Decision Making in the Chronic Kidney Disease Population: A Narrative Review

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