Assessing Patient-Reported Experience of Care for Home Dialysis (ASPIRED)

Study Overview
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Brief Summary
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Home dialysis modalities, including peritoneal dialysis (PD) and home hemodialysis (HHD), represent alternatives to conventional in-center hemodialysis (HD) that for some patients may be better aligned with preferences regarding the integration of dialysis treatments into their lives. Assessment of patient experience and satisfaction with care among individuals undergoing maintenance dialysis in the United States is a national health care priority and mandated by Congress. While validated instruments (ICH CAHPS) are in use to assess patient experience with in-center HD, currently no validated instruments are available to measure patient-reported experience in home dialysis. This Home Patient Experience Survey Validation Study is an in-house research study conducted in partnership with the University of Washington.

Detailed Description
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Assessment of patient experience and satisfaction with care among individuals undergoing maintenance dialysis in the United States is a national health care priority and mandated by Congress. No validated instruments are available to measure the patient-reported experience of care in-home dialysis patients. Such tools are needed as more patients are expected to choose home dialysis therapies in the future. This study aims to validate a home patient experience survey instrument. This is a cross-sectional validation to determine the measurement properties of a new home dialysis patient experience survey instrument. Satellite Healthcare home dialysis patients will be approached by mail or by phone to complete the survey. The aim of this study is to perform field testing for this newly developed instrument for the purposes of instrument validation and to determine survey instrument measurement properties. This will include the evaluation of any multi-item scales as well as an overall score.

Official Title
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Assessing Patient-Reported Experience of Care for Home Dialysis (ASPIRED)

Conditions
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Home Dialysis, End Stage Renal Disease

Intervention / Treatment
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* Other: Survey using Your Home Dialysis Care Experience tool.


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patients receiving care for home dialysis at a facility that provides care for >= 3 patients at the time of cohort identification. Exclusion Criteria: Age < 18 years Patients receiving care for home dialysis at the facility for less than 3 months Institutionalized (senior nursing facility/multi-resident facility) or Hospice care patients

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Mail Survey Participants<br>Approximately 1200 home patients will receive mail surveys. Of these, one thousand and twenty (1,020) patients will be asked to complete the survey once. One hundred and eighty (180) patients will be asked to complete the survey twice. | Other: Survey using Your Home Dialysis Care Experience tool.<br>* Validation of a new survey instrument to capture the experience of care by home dialysis patients.<br>|
| Telephone Survey Participants<br>Three hundred (300) home patients will be surveyed by phone. Of those, one hundred and twenty will be asked to complete the survey once. One hundred and eighty patients will be asked to complete the phone surveys on two separate occasions. | Other: Survey using Your Home Dialysis Care Experience tool.<br>* Validation of a new survey instrument to capture the experience of care by home dialysis patients.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Evaluation of the measurement model | The evaluation will encompass the survey burden, presence of a floor or ceiling effect for any item, test-retest reliability, development of multi-item subscales, internal consistency and reliability, center level reliability of the items and composites, and construct validity. | through survey completion, an average of 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Survey response rate | Percent (%) of participants contacted who complete survey instrument | through survey completion, an average of 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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ESRD, Dialysis, Patient Experience, Home Dialysis