A REVIEW: THE DEVELOPMENT AND CONTENT VALIDITY OF A PATIENT REPORTED EXPERIENCE MEASURE FOR HOME DIALYSIS (1st draft)

 

A REVIEW: THE DEVELOPMENT AND CONTENT VALIDITY OF A PATIENT REPORTED EXPERIENCE MEASURE FOR HOME DIALYSIS

BY JIM MYERS
BOD AT LARGE FOR THE AMERICAN ASSOCIATION OF KIDNEY PATIENTS

Introduction

I have been asked to review Dr. Matthew Rivera, et al recent paper on Development and Content Validity of a Patient Reported Experience Measure for Home Dialysis, https://www.asn-online.org/education/kidneyweek/2020/program-abstract.aspx?controlId=3437240 (October 2020)

Background and Objectives
The number of kidney patients utilizing home dialysis has been growing rapidly and it appears that it will continue to grow in the immediate future. Although there are scientific numbers to quantify the quality of care and actual patient experience with in center hemodialysis, there are no corresponding scientific numbers to quantify the quality of home dialysis modalities from home dialysis patients. How kidney patients feel about their experiences with home dialysis has not been reduced to a quantifiable, uniform, verifiable set of scientific terms.

The purpose of this paper was to suggest some repeatable, objective terms to help define how home dialysis patients feel about their home dialysis experiences. The authors used what they referred to as a "mixed method multiple stakeholder approach."

Design, Setting, Participants, and Measurements

They did a precise literature search, conducted special topic oriented focus group interviews, and interviewed 65 participants, including 21 home dialysis patients, 33 home dialysis nurses, 3 patient care partners, and 8 nephrologists. This helped them come up with a list of possible measurement items. They ran the measurement list candidates past a nationwide group including, 91 home dialysis patients and 39 providers using a web-based platform. The group was requested to prioritize the items on the list in the order of importance.

From these interviews, they create the Home Dialysis Care Experience (Home-DCE) standards. Then they conducted cognitive debriefing interviews to evaluate item interpretability, order, and structure. The measures were reevaluated and refined based on interview findings.

Results

As a result of the interviews and studies, they were able to create 15 domains of home dialysis care experience
in 6 areas:
• Communication and education of patients;
• Concern and helpfulness of the care team;
• Proficiency of the care team;
• Patient-centered care;
• Care coordination; and
• Amenities and environment.
Focus groups results showed that what patients thought was the most important were:
• Patient education and communication,
• Care coordination, and personalization of care.
The Prioritization exercise results confirmed focus group findings.

Also, concluding debriefing with patients indicated that the final measures was easily understood and supported content validity.

Conclusions

The group accomplished it's goal in discovering an objective, scientific method to quantify the patients' home dialysis experience. The Home-DCE toolbox is a 26-item patient-reported experience measure for use in peritoneal dialysis and home hemodialysis. The Home-DCE instrument represents the first of it's kind for the assessment of patient-reported experience of care in home dialysis.