ABSTRACT
Rationale & Objective: Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information on dialysis and CKM but also encourage end-of-life planning. We iteratively developed a paper-based patient-decision aid for older people with low literacy and conducted surveys to assess its acceptability. Study Design: Design-based research. Setting and Participants: Informed by design-based research principles and theory of behavioral activation, a multidisciplinary team of experts created a first version of the patient-decision aid containing 2 components: (1) educational material about kidney therapy options such as CKM, and (2) a question prompt list relevant to kidney therapy and end-of-life decision making. On the basis of the acceptability input of patients and caregivers, separate qualitative interviews of 35 people receiving maintenance dialysis, and with the independent feedback of educated layperson, we further modified the patient-decision aid to create a second version. Analytical Approach: We used descriptive statistics to present the results of acceptability surveys and thematic content analyses for patients' qualitative interviews. Results: The mean age of patients (n=21) who tested the patient-decision aid was 80 years and the mean age of caregivers (n=9) was 70 years. All respondents held positive views about the educational component and would recommend the educational component to others (100% patients and caregivers). Most of the patients reported that the question prompt list helped them put concerns into words (80% patients and 88% caregivers) and would recommend the question prompt list to others (95% patients and 100% caregivers). Limitations: Single-center study. Conclusions: Both components of the patient-decision aid received high acceptability ratings. We plan to launch a larger effectiveness study to test the outcomes of a decision-supporting intervention combining the patient-decision aid with palliative care-based decision coaching.
ABSTRACT
Rationale & Objective: The incidence and prevalence of patients with kidney failure requiring dialysis are increasing in Pakistan. However, in-depth perspectives on kidney care from Pakistani people requiring maintenance dialysis are lacking. Study Design: Qualitative interview study. Setting & Participants: Between September 2020 and January 2021, we interviewed 20 adults receiving maintenance hemodialysis in 2 outpatient dialysis units in Pakistan. We asked open-ended questions to explore their experiences with various aspects of kidney care. Analytical Approach: We recorded, transcribed, and then, using a phenomenological approach, thematically analyzed interviews. Results: We observed the following 6 main themes: (1) Patients perceived various supernatural phenomena as causes of their illness and chose traditional medicine for chronic kidney disease (CKD) treatment. (2) Patients expressed dissatisfaction with their physicians' communication. They felt poorly informed and resented their decision to initiate dialysis. (3) Family members tried to dissuade patients away from dialysis but also provided support once dialysis was initiated. (4) Patients and families found it challenging to afford dialysis and transplantation and also to arrange for transportation. (5) Women found it challenging to fulfill their obligations as wives and mothers while receiving maintenance dialysis. (6) Patients seemed reluctant to discuss end-of-life care. Limitations: We collected data from only 2 hospitals in neighboring cities. Additionally, patients on peritoneal dialysis were not included. Conclusions: Our findings shed light on patients' perspectives on kidney care in Pakistan and call for financially feasible solutions to raise kidney disease awareness and improve patients' experiences with dialysis. Physician training in communication and shared dialysis decision making along with the development of culturally adapted decision aids are needed to improve CKD knowledge and shared decision making. Although financial challenges preclude many from receiving long-term dialysis, cost-effective strategies to improve the availability of other options (eg, supportive kidney care, peritoneal dialysis, and transplantation) are still warranted.
