Article Figures & Data
Figures
- Figure 1.
Flow chart depicting the overall five-step study methodology. HOME-DCE, Home Dialysis Care Experience; PREM, patient-reported experience measure.
Tables
Characteristica Prioritization Survey Participants,bn=91 Age, yr 18–34 6 (7) 35–54 26 (28) 55–74 49 (54) 75 or older 10 (11) Sex Men 44 (48) Women 47 (52) Race/ethnicity Non-Hispanic White 61 (72) Hispanic 11 (13) Non-Hispanic Black 6 (7) Asian 6 (7) Other 1 (1) Education Less than high school 2 (2) High school graduate or GED 12 (13) Some college or 2-yr degree 34 (37) College graduate 14 (15) More than college degree 29 (32) Home dialysis modalityc Peritoneal dialysis 30 (33) Home hemodialysis 18 (20) Unknown 43 (47) Time on home dialysis <6 mo 7 (8) 6–11 mo 14 (17) 1–5 yr 49 (58) >5 yr 14 (17) Employment status Employed full time 21 (24) Employed part time 7 (8) Unemployed 4 (4) Homemaker 3 (3) Full-time student 1 (1) Retired 28 (32) Disabled or cannot work due to health reason 22 (25) Other 2 (2) United States geographic region West 31 (34) Midwest 16 (18) South 24 (27) Northeast 19 (21) Self-rated overall health Excellent 0 (0) Very good 30 (35) Good 31 (36) Fair 18 (22) Poor 6 (7) Comorbid conditions Hypertension 60 (66) Diabetes 26 (31) Cardiovascular disease 16 (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.
Characteristica Prioritization Survey Participants, n=39 Age, yr 18–34 1 (3) 35–54 22 (56) 55–74 16 (41) 75 or older 0 (0) Sex Men 20 (51) Women 19 (49) Clinical role Nephrologist 17 (44) Nurse 19 (49) Dialysis technician 1 (3) Other 2 (5) Length of time caring for patients on home dialysis, yr <5 2 (5) 5 to <10 4 (11) 10 to <20 16 (42) >20 15 (39) No. of patients on home dialysis, currentb 5 to <10 3 (18) 10 to <15 3 (18) >15 11 (64) No. of patients on home dialysis, lifetimeb <20 0 (0) 20 to <50 3 (18) >50 14 (82) United States geographic region West 26 (66) Midwest 4 (10) South 7 (18) Northeast 2 (5) - Table 3.
Home dialysis care domains and aspects of care from concept elicitation focus groups
Grouped Area and Home Dialysis Care Domain No. of Mentions Key Aspects of Care Communication and education Dialysis center staff education of patients and patient-centered communication 107 Clarity 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 communication 15 Frequency 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 staff 36 Perception 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 nephrologist 7 Perception by patient that nephrologist is caring, informed Nephrologist shows respect and takes patient seriously Support services 38 Availability of social work, dietitian, transportation services Availability of backup and respite care Care partner training and support 7 Degree to which care partners receive training and support from staff Proficiency of the care team Dialysis center staff proficiency 36 Perception by patient that dialysis staff members can manage problems, deliver timely care, and show/perform technical aspects of dialysis Patient-centered care Personalization of care 39 Patient perception that staff members take patients’ values and preferences into account in treatment decisions and integration of treatment into life Patient involvement in care 12 Inclusion of patients in decisions regarding dialysis modality Patient comfort in asking questions about care Access and convenience of care 31 Accessibility of home dialysis center Ease of contacting dialysis center staff Accessibility of different dialysis modalities Confidence and safety to perform dialysis at home 33 Confidence in performing all steps of dialysis procedure Knowledge of response to complications, emergencies, disasters Handling of grievances 3 Response by dialysis staff members to complaints and comfort of patients in raising complaints Care coordination Care coordination 39 Perception of patient regarding cooperation among providers Amenities and environment Facility amenities and environment 15 Cleanliness, convenience, quality of dialysis facility space Dialysis supplies, equipment, and home environment 30 Convenience 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.
Domain and Aspect of Care Patient Survey,an=91 Provider Survey,an=39 Not Important Somewhat Important Extremely Important Not Important Somewhat Important Extremely Important Access and convenience of care If asking for help, receiving help as soon as needed at home 0 (0) 7 (8) 84 (92) 0 (0) 2 (5) 37 (95) Seen by the dialysis center staff within 15 min of appointment 5 (5) 43 (47) 43 (47) 1 (3) 22 (56) 16 (41) Care coordination Kidney doctor and dialysis center staff work well together as a team 0 (0) 2 (2) 89 (98) 0 (0) 1 (3) 38 (97) Frequency of good communication among the dialysis center staff 0 (0) 8 (9) 83 (91) 0 (0) 2 (5) 37 (95) Knowing who to call if there are problems with home dialysis equipment 0 (0) 2 (2) 89 (98) 0 (0) 0 (0) 39 (100) Staff members help solve problems with receiving home dialysis supplies 1 (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 person 1 (1) 22 (24) 67 (74) 0 (0) 4 (10) 35 (89) Staff members ask if you have concerns or questions 1 (1) 24 (27) 64 (72) 0 (0) 3 (8) 36 (93) Staff members listen carefully to you 0 (0) 5 (5) 86 (95) 0 (0) 1 (3) 38 (97) Staff members show respect for what you have to say 0 (0) 7 (8) 83 (92) 0 (0) 1 (3) 38 (97) Feel supported when calling home dialysis center staff for help 0 (0) 7 (8) 84 (92) 0 (0) 0 (0) 39 (100) Staff members spend enough time with you 1 (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 access 0 (0) 1 (1) 89 (99) 0 (0) 1 (3) 38 (97) Staff members tell you what to do if you have problems with dialysis equipment 0 (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 home 0 (0) 16 (18) 74 (82) 0 (0) 5 (13) 34 (87) You are confident in ability to perform dialysis safely at home 0 (0) 3 (3) 87 (97) 0 (0) 2 (5) 37 (95) Staff proficiency Staff members able to help solve problems you encounter with home dialysis 0 (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 care 1 (1) 28 (31) 62 (68) 0 (0) 6 (15) 33 (85) Satisfied with the way staff members address concerns you raise about care 0 (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, transplant 0 (0) 4 (4) 87 (96) 0 (0) 3 (8) 36 (93) Personalization of care Home dialysis care adjusted to individual lifestyle and schedule 2 (2) 12 (13) 77 (85) 0 (0) 8 (20) 31 (79) Staff and nephrologist help to find a treatment plan that works for you 1 (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 understand 0 (0) 18 (20) 73 (80) 0 (0) 2 (5) 37 (95) Receive timely laboratory results 2 (2) 29 (32) 60 (66) 1 (3) 15 (39) 23 (59) Receiving teaching related to care 3 (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 emergency 0 (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 dialysis 2 (2) 16 (17) 73 (81) 0 (0) 7 (18) 32 (82) Support services Staff members talk to you about what you should eat and drink 6 (7) 32 (35) 53 (58) 1 (2) 7 (18) 31 (80) You are able to meet with the social worker if you want to 8 (9) 41 (45) 42 (46) 1 (3) 9 (23) 29 (74) Dialysis staff members conduct home visits 14 (15) 41 (45) 36 (40) 1 (3) 9 (23) 29 (74) ↵a Data are presented as n (%).
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Development and Content Validity of a Patient-Reported Experience Measure for Home Dialysis
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