Perceived benefits, threat inform intention to pursue early access creation for dialysis
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Results of a questionnaire administered to patients with advanced chronic kidney disease revealed intentions to pursue vascular access were heavily informed by patient perception of the benefits early access creation might provide.
Patients who perceive themselves at higher threat from kidney disease (ie, patients with lower eGFRs) may also be more likely to seek access creation prior to kidney failure, results suggested.
“Much research on dialysis-related decision-making has focused on the retrospective assessment of patients already undergoing dialysis,” Jace Ming Xuan Chia, BSocSci, of the Centre for Population Health Sciences at Lee Kong Chian School of Medicine at Nanyang Technological University in Singapore, and colleagues wrote. “Less is known about patients not receiving [kidney replacement therapy] KRT who are faced with the impending decision regarding dialysis. The present study built on existing research through the development and preliminary validation of a measure of attitudes toward dialysis access and assessed psychosocial factors predictive of dialysis access intentions and outcomes in patients approaching kidney failure.”
A total of 190 patients with stage 4 or 5 CKD, as well as 128 family members, were included in the study, which first gauged patient intention to pursue early access. Intention to create an arteriovenous fistula was based on whether patients chose to proceed with access or “wait and see.”
“We focused on patients’ access intentions because access creation procedures cannot be initiated without patient consent,” the researchers wrote.
Patient responses to the questionnaire provided specific reasoning and attitudes regarding this decision. Specifically, researchers evaluated access and dialysis concerns (eg, concerns about the procedure, adverse events and outcomes), financial concerns, perceived necessity of treatment and value or perceived benefits to be gained from early access creation.
Key patient perceptions
Xuan Chia and colleagues found 51.1% of the study population preferred to delay access creation and went on to initiate dialysis with a central venous catheter. This decision arose, they noted, even after patients attended counseling sessions on KRT.
Results of the multivariable analysis showed the intention to proceed with access creation was best predicted by a greater perceived value from access (odds ratio = 2.61), with patients who perceived fistula creation as serving to make the transition to dialysis “smoother” more likely to proceed.
“Furthermore, high threat (indexed by low eGFR, worse general health perceptions and more negative emotional response) coupled with higher patient satisfaction fosters an intention to undergo access preparation,” the researchers wrote. “Given that dialysis initiation is seen as a threatening prospect, emphasizing the positive outcomes afforded by timely access creation may help mitigate the emotional threat and concerns. Without this emphasis, education efforts may become counterproductive, as patients may adopt unhelpful coping strategies that interfere with treatment activation such as denial or defensive avoidance.”
Shared decision-making, personalized care
According to Xuan Chia and colleagues, tools like the Dialysis Access Attitudes Questionnaire can prove useful for gaining insight into key patient perceptions toward access creation, thereby guiding discussions and providing support for more patient-centered KRT counseling sessions.
“The concerns identified could serve as individualized targets for pre-dialysis education and decision-support interventions, and clinicians may leverage identified benefits to bolster confidence in decision-making.”
Perspective
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Dori Schatell, MS
I have spent 32 years listening to tens of thousands of people with all stages of chronic kidney disease and their loved ones and treatment care partners. From my perspective, the Chia and colleagues’ study was both spot-on and represents exactly the type of research we should see more of in the United States. Our almost exclusive American focus on the clinical aspects of care and not the patients’ and families’ psychosocial experiences means that papers like these nearly always seem to originate from elsewhere in the world – in this case, Singapore.
The researchers identified an important gap in our knowledge – Why do people with progressive CKD delay the creation of a dialysis access? –and used a multifaceted and robust approach with a decent sample size to identify the reasons and then developed and validated a new measure, which proved to explain just more than half of the variance.
While their thorough efforts beg the question of what influences the other 49.9%, I do have to wonder whether fear of mutilation and change in body image specifically might have been more impactful than “I worry about the effects of having the fistula/PD catheter on my everyday life,” and if needle fear might be a good addition as well vs. “I am afraid of dialysis because of the bad things people say about dialysis.”
What I found particularly compelling about their work was their identification of fear as a major barrier and their incorporation of “worries,” “worry," “afraid,” and “concerned” into seven of the 12 items in their dialysis access attitudes questionnaire. Fear matters, yet is rarely acknowledged, normalized or eased in U.S. nephrology care. Educational research finds that people who are afraid cannot learn, and I would argue that our failure to address patients’ fears is central to their denial, refusal to get a dialysis access and crashing into dialysis emergently. A tool like this new questionnaire may help to shift some practices in the U.S. toward more truly person-centered care and more optimal dialysis starts that include a working access at the initiation of treatment.
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