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. 2022 Sep 21;12(9):e055248. doi: 10.1136/bmjopen-2021-055248

Table 7.

Overview of studies evaluating the identified PtDAs

PtDA Source Population* Sample size Primary outcome(s)† Secondary outcome(s)† Main findings‡
What type of dialysis modality?
No. 6 Multicentre non-randomised controlled study121 Patients with CKD referred for predialysis services Total=189
  • YODDA+standard care=84

  • Control=105

  1. Immediately post-intervention/control: patient and clinical characteristics, illness perception, health-related quality of life, preparation for decision-making

  2. Immediately, and 6 weeks post-intervention/control: how easy were leaflets to read, useful in helping understand kidney disease, dialysis and the decision, sufficient to make a decision, views over control over choice, sharing decisions with spouse/family/health/professionals, knowing other patients’ choices, views of others in decision-making, difficulty in refusing healthcare professional’s recommendation, dialysis choice preference, dialysis and CKD knowledge, perceived seriousness and risk complications of HD and PD, stage of decision-making

  3. 6 weeks post-intervention/control: use of YODDA, decisional conflict

n.a.
  1. Patients in the intervention group had higher scores than patients in the control group for understanding kidney disease, reasoning about options, feeling in control and sharing their decision with family

  2. Patients in the intervention group valued receiving the intervention: 96% read it on their own and 72% shared it with family

  3. At 6 weeks follow-up, patients’ dialysis preferences were spread around 50:50 for home and hospital treatment options in both groups

No. 7 Meeting abstract of pilot study132
  1. Patients with an eGFR <30 mL/min/1.73 m2

  2. Providers

Total=38
(17 patients)
Post-intervention: outcomes of acceptability, usability and feasibility of integrating the interventions into existing care models n.a.
  1. Over 95% of participants recommended the option grid and 100% recommended the decision aid

  2. Participants felt more prepared to identify a treatment options after using the option grid

  3. 100% of participants agreed that the explanation of the options were clear and relevant

  4. 100% of patients reported that the decision aid was relevant and helpful in preparing them to make a decision and plans for next steps

  5. 89,5% of providers found the tools helped patients to better participate in decision-making

No. 8
No.9 Mixed methods: development and pilot study122 Patients with an eGFR <20 mL/min/1.73 m2 Total=137
  • Questionnaires=16

Post-intervention: patient-reported SDM, decisional quality, the patient’s choice of dialysis modality, registration of the dialysis mode for patients starting dialysis n.a.
  1. 80% of the patients chose dialysis at home after the intervention; an increase of 23% compared with prior rates

  2. The majority of the patients experienced the intervention as SDM

Qualitative study: interviews142 Patients with an eGFR <20 mL/min/1.73 m2 Total=349
  • Interviews=29

Post-intervention: patients’ experiences on the impact of SDM and Dialysis Choice (DC) on their involvement in the decision-making process n.a.
  1. Patients experienced the decisions made as their own

  2. Patients felt the meetings contributed to the decision process

  3. Patients felt SDM-DC contributed to the decision process

  4. Patients experienced the decision process as iterative

Mixed methods: questionnaires and interviews143 Patients with an eGFR <20 mL/min/1.73 m2 Total=349
  • Questionnaires=148

  • Interviews=29

Post-intervention: patient-reported SDM, decisional quality, results of semi-structured interviews n.a.
  1. The participants obtained a mean score for SDM of 86 out of 100

  2. There was no significant difference between those choosing home-based or hospital-based treatment

  3. Those choosing home-based treatment had higher knowledge scores that those choosing hospital-based treatment (p=0.006)

  4. 83% of participants achieved a high-quality decision

  5. No significant differences were found in decision quality between patients choosing home-based or hospital-based treatment

Qualitative study: interviews144 Patients with an eGFR <20 mL/min/1.73 m2 Total=349
  • Interviews=13

3 months after dialysis initiation: results of semi-structured interviews n.a.
  1. Patients who had chosen home-based treatment had become more involved in their healthcare

  2. The involvement of relatives and support from healthcare professionals contributed to this increase in self-management

  3. Patients who had chosen hospital-based treatment had become less involved in their healthcare

No. 10 Mixed methods: development and evaluation123 Patients with an eGFR between 10 and 20 mL/min/1.73 m2 Total=22
  1. Pre-intervention: decisional conflict

  2. Post-intervention: decisional conflict, system usability

n.a.
  1. There was no reduction in decisional conflict after using the intervention

  2. The intervention received a low usability score

No. 11 RCT124 Patients with an eGFR <25 mL/min/1.73 m2 Total=133
  • Choosing dialysis=63

  • Control=70

  1. Pre-intervention/control: treatment preference, decisional conflict, decisional self-efficacy

  2. Immediately post-intervention/control: treatment preference, decisional conflict, decisional self-efficacy

  1. Pre-intervention/control: patient characteristics, knowledge, health literacy, health numeracy

  2. Immediately post-intervention/control: preparation for decision-making, knowledge, user experience

  1. Decisional conflict scores were significantly lower in the intervention group (p<0.001)

  2. Knowledge scores were significantly higher in the intervention group (p<0.001)

  3. Decisional self-efficacy scores were comparable between the intervention and control groups

  4. Uncertainty about the choice of dialysis treatment decreased from 46% to 16% in the intervention group

  5. >90% of the intervention group reported that the decision aid helped them in decision-making

Transplantation or dialysis?
No. 13 Multicentre RCT70 Patients with ESKD and on dialysis for <1 year Total=470
  • iChoose Kidney+standard care=238

  • Control=232

Pre-intervention and immediately post-intervention/control: transplant knowledge
  1. Pre-intervention/control: patient characteristics

  2. Within 1 year post-intervention/control: >1 living donor inquiry, placement on the kidney transplant waiting list or the receipt of a living or deceased donor transplant

  3. Pre-intervention and immediately post-intervention/control: decisional conflict

  4. Pre-intervention and immediately post-intervention/control: patient treatment preferences

  5. Immediately post-intervention/control: provider use of estimates of patient survival or mortality to communicate risk estimates, discussion of the benefits of transplant versus dialysis and LDKT versus DDKT

  1. 226 patients in the intervention group completed both the baseline and post-intervention surveys

  2. There was a greater improvement in knowledge score for the intervention group compared with the control group (p<0.0001)

  3. There was no difference in access to transplantation between the intervention and control groups

No. 14 Mixed methods: development and pilot study125 Patients considering renal transplantation Total=81
  1. Pre-intervention: patient characteristics, previous transplant education, access to and comfort with technology, access to mobile phone with internet or an iPad, comfort with downloading apps, knowledge of transplant options, ability to make an informed decision about ESKD treatment options

  2. Post-intervention: knowledge of transplant options, ability to make an informed decision about ESKD treatment options, acceptability and cultural competence of My Transplant Coach

n.a.
  1. 86% of patients reported that the intervention improved their knowledge

  2. 67%–85% of patient-reported that the intervention was culturally appropriate for their race/ethnicity

  3. Knowledge scores were significantly higher in patients after the intervention (p<0.001), including in patients with low health literary scores

No. 16 Meeting abstract of prospective cohort study135
  1. Patients

  2. Healthcare professionals

Total=293 (176 patients) Post-intervention: patient-reported SDM, SDM awareness and use of the Option grid: KRT, the Dutch Kidney Guide and the Option grid: KRT versus CCM by healthcare professionals n.a.
  1. 12 centres (2 academic, 10 non-academic) participated in the study

  2. When centres with the worst scores for SDM were compared with centres with the best scores for SDM, a difference was noticed in the use of the decision aids (50% vs 100%)

  3. Overall, no significant differences between centres in the scores for SDM were found

  4. 56% of the professionals believed SDM was applied, but only 31%–33% of clinicians used the Option grid: KRT and the Option grid: KRT versus CCM. The Dutch Kidney Guide was used by 51%

Accept or decline IRD kidney offer?
No. 17 RCT126 Kidney transplant candidates Total=288
  • Inform me=133

  • Control=155

Immediately and at 1 week post-intervention/control: IRD knowledge kidneys, willingness to accept an IRD kidney offer, experiences with Inform Me Pre-intervention/control: patient characteristics, health literacy, health numeracy
  1. 105 patients in the intervention group completed both the baseline and post-intervention surveys

  2. Patients in the intervention group had significantly higher knowledge scores immediately after the intervention compared with patients in the control group (p<0.001)

  3. Patients in the intervention group had significantly higher knowledge scores 1 week after the intervention compared with patients in the control group (p<0.001)

  4. These was no difference in the willingness to accept an IRD kidney offer between the groups

Dialysis or CCM?
No. 18 RCT127 Patients >70 years of age with AKD Total=41
  • OPTIONS tool+consultations with a trained renal nurse=19

  • Control=22

1 month and 3 months post-intervention/control: decisional regret, decisional conflict
  1. Pre-intervention/control: patient and clinical characteristics

  2. 1 month post-intervention/control: knowledge, preparation for decision-making

  3. 1 and 3 months post-intervention/control: clinical characteristics health-related quality of life

  1. There were no significant differences in decision conflict, decision regret or health-related quality of life between the intervention and control group

  2. The intervention group had a significantly better improvement in knowledge score than the control group (p<0.001)

  3. The intervention was helpful in preparing patients to make a treatment decision

No. 21 Multicentre RCT129 Patients >65 years of age with an eGFR <25 mL/min/1.73 m2 Total=104
  • Supportive kidney care video education=54

  • Scripted verbal education=51

Pre-intervention and post-intervention/control: supportive kidney care knowledge
  1. Pre-intervention/control: patient characteristics, health literacy

  2. Pre-intervention and post-intervention: preference for KRT

  3. Post-intervention: satisfaction with and acceptability of the intervention

  1. 50 patients in the intervention group completed both the baseline and the post-intervention surveys

  2. Knowledge of supportive kidney care increased significantly after education among all participants (p<0.001)

  3. There were no differences in knowledge between the intervention and the control group

  4. There were no differences in preference for supportive kidney care between the intervention and the control group

  5. 96% of patients were comfortable with watching the video

  6. 96% of patients felt that the content of the video was helpful

  7. 96% of the patients reported they would recommend the video to others

Transplantation, dialysis or CCM?
No. 22 Mixed methods: development and evaluation130 Patients with an eGFR <20 mL/min/1.73 m2 Total=65  Pre-intervention and 2 months post-intervention: decisional quality n.a.
  1. 39 patients completed the both the baseline and post-intervention surveys

  2. Comparison of the decisional quality at baseline and follow-up showed improvements in patients’ overall knowledge on their treatment options

  3. Comparison of the decisional quality at baseline and follow-up showed improvements in patients’ readiness to decide on a treatment option

No. 24 Multicentre RCT145 Self-reported African-Americans with ESKD <2 years Total=92
  • PREPARED=30

  • PREPARED+living donor financial assistance programme=31

  • Control=31

1, 3 and 6 months post-intervention/control: discussing LDKT with family members, discussing LDKT with their doctor, initiation of the recipient medical evaluation for LDKT, completion of the recipient evaluation for LDKT, identification of a potential live kidney donor, participants beliefs about kidney transplant and their concerns about LDKT
  1. Pre-intervention/control: patient and clinical characteristics, experiences with HD care, prior preparation for KRT or LDKT, perceived involvement in kidney treatment decisions, concerns regarding LDKT

  2. 1, 3 and 6 months post-intervention: fidelity and usefulness, whether participants shared the donor financial assistance programme with family members or friends

  1. 62% of participants in the intervention groups reported that it helped them their decision-making about KRT

  2. There were no significant improvements in LDKT action in both groups over 6 months

  3. There were no participants that used the living donor financial assistance programme

No. 25 Multicentre pre-post study178 Patients referred for ESKD education Total=97 Pre-intervention and post-intervention: patient characteristics, knowledge, worries, values and decision-making experience with the decision-aid, experienced education-methods, utilisation level of the decision-aid, whether decision-making involved significant others, ranking of preferred treatment options n.a.
  1. 72 patients completed the both the baseline and post-intervention surveys

  2. Knowledge levels increased significantly after the intervention (p<0.001)

  3. Worry and flexibility scores all increased significantly after the intervention (p<0.05)

  4. This preliminary assessment revealed high patient acceptance and usability of the intervention

No. 26 Meeting abstract of prospective cohort study135
  1. Patients

  2. Healthcare professionals

Total=293 (176 patients) Post-intervention: patient-reported shared decision-making, SDM awareness and use of the Option grid: KRT, the Dutch Kidney Guide and the Option grid: KRT versus CCM by healthcare professionals n.a.
  1. 12 centres (2 academic, 10 non-academic) participated in the study

  2. When centres with the worst scores for SDM were compared with centres with the best scores for SDM, a difference was noticed in the use of the decision aids (50% vs 100%)

  3. Overall, no significant differences between centres in the scores for SDM were found

  4. 56% of the professionals believed SDM was applied but only 31%–33% of clinicians used the Option grid: KRT and the Option grid: KRT versus CCM. The Dutch Kidney Guide was used by 51%

No. 27

*Population formulated as reported in the identified records.

†Outcomes formulated as reported in the identified records.

‡Main findings formulated as reported in the identified records.

AKD, advanced kidney disease; CCM, conservative care management; CKD, Chronic Kidney Disease; DDKT, deceased donor kidney transplantation; eGFR, estimated glomerular filtration rate; ESKD, end-stage kidney disease; HD, Haemodialysis; IRD, increased risk donors; KRT, Kidney Replacement Therapy; LDKT, Living Donor Kidney Transplantation; n.a., not applicable; PD, peritoneal dialysis; PREPARED, providing resources to enhance African-American patients' readiness to make decisions about kidney disease; PtDAs, patient decision aids; RCT, randomised controlled trial; RRT, renal replacement therapy; SDM, shared decision-making; YODDA, Yorkshire dialysis decision aid.