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Original ArticlesMaintenance Dialysis
Open Access

Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis

Matthew B. Rivara, Todd Edwards, Donald Patrick, Lisa Anderson, Jonathan Himmelfarb and Rajnish Mehrotra
CJASN April 2021, 16 (4) 588-598; DOI: https://doi.org/10.2215/CJN.15570920
Matthew B. Rivara
1Kidney Research Institute, University of Washington, Seattle, Washington
2Division of Nephrology, Department of Medicine, Harborview Medical Center, University of Washington, Seattle, Washington
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Todd Edwards
3Department of Health Services, School of Public Health, University of Washington, Seattle, Washington
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Donald Patrick
3Department of Health Services, School of Public Health, University of Washington, Seattle, Washington
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Lisa Anderson
1Kidney Research Institute, University of Washington, Seattle, Washington
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Jonathan Himmelfarb
1Kidney Research Institute, University of Washington, Seattle, Washington
2Division of Nephrology, Department of Medicine, Harborview Medical Center, University of Washington, Seattle, Washington
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Rajnish Mehrotra
1Kidney Research Institute, University of Washington, Seattle, Washington
2Division of Nephrology, Department of Medicine, Harborview Medical Center, University of Washington, Seattle, Washington
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    Figure 1.

    Flow chart depicting the overall five-step study methodology. HOME-DCE, Home Dialysis Care Experience; PREM, patient-reported experience measure.

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    Table 1.

    Characteristics of patient prioritization survey participants

    CharacteristicaPrioritization Survey Participants,bn=91
    Age, yr
     18–346 (7)
     35–5426 (28)
     55–7449 (54)
     75 or older10 (11)
    Sex
     Men44 (48)
     Women47 (52)
    Race/ethnicity
     Non-Hispanic White61 (72)
     Hispanic11 (13)
     Non-Hispanic Black6 (7)
     Asian6 (7)
     Other1 (1)
    Education
     Less than high school2 (2)
     High school graduate or GED12 (13)
     Some college or 2-yr degree34 (37)
     College graduate14 (15)
     More than college degree29 (32)
    Home dialysis modalityc
     Peritoneal dialysis30 (33)
     Home hemodialysis18 (20)
     Unknown43 (47)
    Time on home dialysis
     <6 mo7 (8)
     6–11 mo14 (17)
     1–5 yr49 (58)
     >5 yr14 (17)
    Employment status
     Employed full time21 (24)
     Employed part time7 (8)
     Unemployed4 (4)
     Homemaker3 (3)
     Full-time student1 (1)
     Retired28 (32)
     Disabled or cannot work due to health reason22 (25)
     Other2 (2)
    United States geographic region
     West31 (34)
     Midwest16 (18)
     South24 (27)
     Northeast19 (21)
    Self-rated overall health
     Excellent0 (0)
     Very good30 (35)
     Good31 (36)
     Fair18 (22)
     Poor6 (7)
    Comorbid conditions
     Hypertension60 (66)
     Diabetes26 (31)
     Cardiovascular disease16 (18)
    • GED, Tests of general educational development.

    • ↵a Data are presented as n (%).

    • ↵b Data were missing for comorbidities and self-rated health for 6% of participants; race was missing for 5%; and ethnicity, employment status, and geographic region were missing for <3%.

    • ↵c Data on home dialysis modality were unknown for 47% of participants due to a missing question on the initial survey round.

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    Table 2.

    Characteristics of health care provider prioritization survey participants

    CharacteristicaPrioritization Survey Participants, n=39
    Age, yr
     18–341 (3)
     35–5422 (56)
     55–7416 (41)
     75 or older0 (0)
    Sex
     Men20 (51)
     Women19 (49)
    Clinical role
     Nephrologist17 (44)
     Nurse19 (49)
     Dialysis technician1 (3)
     Other2 (5)
    Length of time caring for patients on home dialysis, yr
     <52 (5)
     5 to <104 (11)
     10 to <2016 (42)
     >2015 (39)
    No. of patients on home dialysis, currentb
     5 to <103 (18)
     10 to <153 (18)
     >1511 (64)
    No. of patients on home dialysis, lifetimeb
     <200 (0)
     20 to <503 (18)
     >5014 (82)
    United States geographic region
     West26 (66)
     Midwest4 (10)
     South7 (18)
     Northeast2 (5)
    • ↵a Data are presented as n (%).

    • ↵b Data were collected for nephrologists only.

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    Table 3.

    Home dialysis care domains and aspects of care from concept elicitation focus groups

    Grouped Area and Home Dialysis Care DomainNo. of MentionsKey Aspects of Care
    Communication and education
     Dialysis center staff education of patients and patient-centered communication107Clarity and quality of communication between staff, patient, care partner
    Accuracy, completeness, flexibility of education content
    Effectiveness in addressing patient’s questions
     Nephrologist education of patients and patient-centered communication15Frequency of communication between nephrologist, patient, care partner
    Availability of nephrologist and communication with dialysis staff
    Concern and helpfulness of the care team
     Concern and helpfulness of the dialysis center staff36Perception by patient that staff members are caring, informed, respectful
    Perception by patient that staff members are proactive and helpful when asked
     Concern and helpfulness of the nephrologist7Perception by patient that nephrologist is caring, informed
    Nephrologist shows respect and takes patient seriously
     Support services38Availability of social work, dietitian, transportation services
    Availability of backup and respite care
     Care partner training and support7Degree to which care partners receive training and support from staff
    Proficiency of the care team
     Dialysis center staff proficiency36Perception by patient that dialysis staff members can manage problems, deliver timely care, and show/perform technical aspects of dialysis
    Patient-centered care
     Personalization of care39Patient perception that staff members take patients’ values and preferences into account in treatment decisions and integration of treatment into life
     Patient involvement in care12Inclusion of patients in decisions regarding dialysis modality
    Patient comfort in asking questions about care
     Access and convenience of care31Accessibility of home dialysis center
    Ease of contacting dialysis center staff
    Accessibility of different dialysis modalities
     Confidence and safety to perform dialysis at home33Confidence in performing all steps of dialysis procedure
    Knowledge of response to complications, emergencies, disasters
     Handling of grievances3Response by dialysis staff members to complaints and comfort of patients in raising complaints
    Care coordination
     Care coordination39Perception of patient regarding cooperation among providers
    Amenities and environment
     Facility amenities and environment15Cleanliness, convenience, quality of dialysis facility space
     Dialysis supplies, equipment, and home environment30Convenience and accessibility of dialysis supply and delivery process
    Helpfulness of staff in dealing with supply issues
    • Care partner was defined as any person identified by the individual undergoing dialysis as important in assisting in any aspect of the dialysis care.

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    Table 4.

    Results of web-based prioritization exercise

    Domain and Aspect of CarePatient Survey,an=91Provider Survey,an=39
    Not ImportantSomewhat ImportantExtremely ImportantNot ImportantSomewhat ImportantExtremely Important
    Access and convenience of care
     If asking for help, receiving help as soon as needed at home0 (0)7 (8)84 (92)0 (0)2 (5)37 (95)
     Seen by the dialysis center staff within 15 min of appointment5 (5)43 (47)43 (47)1 (3)22 (56)16 (41)
    Care coordination
     Kidney doctor and dialysis center staff work well together as a team0 (0)2 (2)89 (98)0 (0)1 (3)38 (97)
     Frequency of good communication among the dialysis center staff0 (0)8 (9)83 (91)0 (0)2 (5)37 (95)
     Knowing who to call if there are problems with home dialysis equipment0 (0)2 (2)89 (98)0 (0)0 (0)39 (100)
     Staff members help solve problems with receiving home dialysis supplies1 (1)22 (24)68 (74)0 (0)8 (21)31 (79)
    Concern and helpfulness of dialysis center staff
     Feel that staff members really care about you as a person1 (1)22 (24)67 (74)0 (0)4 (10)35 (89)
     Staff members ask if you have concerns or questions1 (1)24 (27)64 (72)0 (0)3 (8)36 (93)
     Staff members listen carefully to you0 (0)5 (5)86 (95)0 (0)1 (3)38 (97)
     Staff members show respect for what you have to say0 (0)7 (8)83 (92)0 (0)1 (3)38 (97)
     Feel supported when calling home dialysis center staff for help0 (0)7 (8)84 (92)0 (0)0 (0)39 (100)
     Staff members spend enough time with you1 (1)13 (14)77 (85)0 (0)5 (13)33 (87)
    Knowledge and safety to perform dialysis at home
     Knowing how to take care of dialysis access0 (0)1 (1)89 (99)0 (0)1 (3)38 (97)
     Staff members tell you what to do if you have problems with dialysis equipment0 (0)12 (13)79 (87)0 (0)3 (8)36 (92)
     Staff members tell you what to do if you have a health problem at home0 (0)16 (18)74 (82)0 (0)5 (13)34 (87)
     You are confident in ability to perform dialysis safely at home0 (0)3 (3)87 (97)0 (0)2 (5)37 (95)
    Staff proficiency
     Staff members able to help solve problems you encounter with home dialysis0 (0)13 (14)77 (86)0 (0)0 (0)39 (100)
    Handling of grievances
     You are able to talk to staff about being unhappy with care1 (1)28 (31)62 (68)0 (0)6 (15)33 (85)
     Satisfied with the way staff members address concerns you raise about care0 (0)17 (19)74 (81)0 (0)3 (8)36 (93)
    Patient involvement in care
     You are involved as much as you want in choosing treatment for your kidney disease, including center dialysis, home dialysis, transplant0 (0)4 (4)87 (96)0 (0)3 (8)36 (93)
    Personalization of care
     Home dialysis care adjusted to individual lifestyle and schedule2 (2)12 (13)77 (85)0 (0)8 (20)31 (79)
     Staff and nephrologist help to find a treatment plan that works for you1 (1)4 (4)86 (95)0 (0)4 (10)35 (90)
    Education of patients and patient-centered communication
     Staff members explain things in a way that is easy to understand0 (0)18 (20)73 (80)0 (0)2 (5)37 (95)
     Receive timely laboratory results2 (2)29 (32)60 (66)1 (3)15 (39)23 (59)
     Receiving teaching related to care3 (3)23 (26)64 (71)0 (0)4 (10)35 (89)
     Staff members tell you what to do if unable to dialyze at home due to emergency0 (0)8 (9)82 (91)0 (0)4 (10)35 (90)
     Staff member or nephrologist talks to you as much as you want about treatment options for dialysis2 (2)16 (17)73 (81)0 (0)7 (18)32 (82)
    Support services
     Staff members talk to you about what you should eat and drink6 (7)32 (35)53 (58)1 (2)7 (18)31 (80)
     You are able to meet with the social worker if you want to8 (9)41 (45)42 (46)1 (3)9 (23)29 (74)
     Dialysis staff members conduct home visits14 (15)41 (45)36 (40)1 (3)9 (23)29 (74)
    • ↵a Data are presented as n (%).

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Clinical Journal of the American Society of Nephrology: 16 (4)
Clinical Journal of the American Society of Nephrology
Vol. 16, Issue 4
April 07, 2021
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Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis
Matthew B. Rivara, Todd Edwards, Donald Patrick, Lisa Anderson, Jonathan Himmelfarb, Rajnish Mehrotra
CJASN Apr 2021, 16 (4) 588-598; DOI: 10.2215/CJN.15570920

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Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis
Matthew B. Rivara, Todd Edwards, Donald Patrick, Lisa Anderson, Jonathan Himmelfarb, Rajnish Mehrotra
CJASN Apr 2021, 16 (4) 588-598; DOI: 10.2215/CJN.15570920
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