Examining the Role of Caregiver towards Blood Transfusion Decisions Among Individuals with Chronic Kidney Disease

Examine the roles of a caregiver in supporting treatment decisions towards blood transfusions among individuals with chronic kidney disease (CKD) currently not on dialysis.

An online survey was conducted from a nationally representative patient panel in 1Q2011. All respondents consented to participate through informed consent. IRB review was sought through Western Institutional Review Board (WIRB). Respondents were aged ≥18 years, living in the United States, and diagnosed with CKD by a physician. Eligible participants have stage 3 or 4 CKD and not currently undergoing dialysis treatment and have health insurance. Participants were asked about blood transfusion history, presence of anemia, types of caregivers, and roles of the caregiver in assisting with management of their CKD and making health and treatment decisions towards blood transfusion. Informed patient consent was provided

A total of 416 individuals responded to the survey. 59% (n=246) were female; 40% (n=165) were >65 years. 35% (n=144) had stage 4 and 58% (n=240) stage 3 CKD. 53% were insured by Medicare, 49% were insured under a commercial PPO plan, and 3% had various other types of commercial insurance coverage. 54% (n=226) were anemic. 43% (n=179) had received blood transfusion, whereas, 57% (n=237) had no transfusions. Among all respondents (n=416), over half (53%, n=220) reported that no one helps them with their daily activities, over one-third (36%, n=150) said that their spouse helps them, followed by child (9%, n=37), friend (7%, n=29), another relative (5%, n=21), parent (3%, n=12), paid helper (3%, n=12), a visiting doctor or nurse (3%, n=12). Among those who seek caregiver help (n=195), two-thirds (64%) reported being cared for by their spouse, 42% said they seek help from a friend, and 21% get care from their child on a daily basis. When asked about how often someone helps with making health and medical care decision, 86% reported that their spouse helps them, followed by friend (51%), and child (46%) always or sometimes. Almost two-thirds (63%) indicated that they have the right amount of caregiver support in making the treatment choice for a blood transfusion and 61% reported that they made an informed decision, whereas, 40% said that they feel pressured by others to make the decision. Furthermore, a higher percentage (74%) of previously transfused individuals agreed that they have the right amount of caregiver support in making a transfusion choice as compared to the not transfused group (55%). Among previously transfused, only 50% indicated they shared in treatment decision with their doctor, whereas 40% indicated their doctor or someone else had made the decision for them. Among those who indicated someone else made the decision, 82% indicated that they like to make a shared decision. Among not transfused, over 75% would like to share decision to have blood transfusion with their doctor.

Caregivers play an important role in helping individuals with their health and medical treatment decision. Spouse, child, and friend are the main types of caregivers providing care on a daily basis. Furthermore, caregivers play a major role in providing health and treatment decision support. Visiting doctors and nurses are also sought as caregivers to a lesser extent. A significant number feel that they feel pressured into making treatment decisions towards blood transfusion.

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