Kidney Disease Pathways, Options and Decisions (KD-POD): An Environmental Scan of International Patient Decision Aids (PtDA), Nephrol Dial Transplant 2020;gfaa102. doi: 10.1093/ndt/gfaa102
In the originally published version of this manuscript, several errors were noted and listed in this corrigendum.
Upon the original publication, the following texts in the “Results” section should read:
“Resources varied in length between 1 and 55 pages {mean 14.8 [standard deviation (SD) 14.2]}”
“They were available as booklets and PDF files (PtDA 1, 2, 3, 4, 5, 6, 7, 8, 10, 11, 12, 14, 15, 16, 17), interactive websites (PtDAs 2, 5, 7, 9, 10, 11, 13, 14, 15); additional materials included an audio file (PtDA 3), videos (PtDAs 6, 8), a staff user guide (PtDA 4), drawings (PtDA 6), a patient worksheet (PtDA 3), a development document (PtDA 7), risk information (PtDA 16) and individualised summary sheet (PtDA 13).”
Upon the original publication, the resource availability for “My Life, My Dialysis Choice.” in Table 1. should read: “Interactive website” instead of “Interactive website and online PDF”. In addition, the number of pages should read: “27” instead of “3”.
Upon the original publication, the results in cell 3, in Table 2. recorded “A Decision Aid for Patients: The choice of dialysis for the older person with End Stage Kidney Disease. Study Protocol”. This has been updated to record “A Decision Aid for Patients: The choice of dialysis for the older person with End Stage Kidney Disease: OPTIONS tool”.
Table 1.
Characteristics of PtDAs designed to support patients with CKD in making treatment choices
| PtDA ID | Title | Organization | Location | Resource availability | Publically available | Year published | No. pages1 | Flesch readability score | Endorsement by third party |
|---|---|---|---|---|---|---|---|---|---|
| 1 | Dialysis Decision Aid booklet: Making the right choices for you | Kidney Research UK (charity) | UK | Online PDF | ✓ | 2014 | 55 | 58.9 | ✓ |
| 2 | NHS Rightcare—Established Kidney Failure (Kidney Dialysis) decision Aid. | Totally Health/NHS (healthcare service) | UK | Online PDF | 2017 | 10 | 63.6 | ||
| 3 | The Choice of Dialysis for the Older Person with End-Stage Kidney Disease: A Decision Aid for Patients | Queensland University of Technology (academic institution) | Australia | PDF and audio CD, worksheet | ✓ | – | 36 | 70.7 | ✓ |
| 4 | ‘My Kidney’s, My Choice’. A decision aid for the treatment of kidney disease. | Kidney Health Australia; Kidney Health New Zealand; Home Dialysis (charity) | Australia and New Zealand | Online PDF, staff handbook, available and adapted by the Canadian Kidney Knowledge Translation and Generation Network (CANN-NET) website | ✓ | – | 15 | 61.4 | |
| 5 | Choosing dialysis: empowering patients for choices on renal replacement therapy | Ann Arbor Research Collaborative for Health (not for profit organization) | USA | Interactive website and online PDF | ✓ | 2017 | 9 | 68.7 | |
| 6 | Dialysis Choice | Aarhus University (academic institution) | Denmark | PDF, four videos and a book of photographs/drawings | – | 16 | 70.1 | ✓ | |
| 7 | Option Grid: Chronic Kidney Disease: treatment options | Option Grid Collaborative: The Dartmouth Institute (academic institution) | UK | Web based and online PDF | ✓ | 2015 | 1 | 63.2 | |
| 8 | Shared End-Stage Renal Patients Decision-Making | The Ottawa Hospital (healthcare service) | Canada | PDF, YouTube video with scripted drama about use of shared decision-making and decision aid | 2014 | 4 | 67.6 | ||
| 9 | Conservative Kidney Management | Kidney Health Strategic Clinical Network TM of Alberta Health Services, Northern Alberta Renal Programme, Southern Alberta Renal Programme and Alberta Innovates Health Solutions (multi-organization healthcare service) | Canada | Interactive website | ✓ | 2017 | 3 | 70.1 | |
| 10 | Kidney Failure: Should I Start Dialysis? | Healthwise (not for profit organization) | USA | Interactive website and online PDF | ✓ | – | 10 | 62.6 | ✓ |
| 11 | Kidney failure: What type of dialysis should I have? | Healthwise (not for profit organization) | USA | Interactive website and Online PDF | ✓ | – | 14 | 63.9 | ✓ |
| 12 | Dialysis decision aid: Brighton and Sussex University Hospitals NHS Trust | Brighton and Sussex University Hospitals NHS Trust (healthcare service) | UK | Online PDF | ✓ | 2013 | 62.1 | ✓ | |
| 13 | My Life, My Dialysis Choice. | Medical Education Institute (not for profit organization) | USA | Interactive website | ✓ | 2016 | 27 | 88.6 | ✓ |
| 14 | The Yorkshire Dialysis Decision Aid | University of Leeds | UK | Research website | ✓ | 2014 | 11 | 59.0 | ✓ |
| 15 | Established Kidney Failure decision aid—NHS Rightcare | Totally Health/NHS (healthcare service) | UK | Web based and online PDF | 2017 | 6 | 62.9 | ||
| 16 | Ottawa decision aid: Dialysis versus non-comprehensive dialysis care | The Ottawa Hospital (healthcare service) | Canada | Paper, additional sheets on risk | 2016 | 4 | 56.3 | ||
| 17 | Renal Treatment Options Grid: comparing treatment options for when your kidneys are not working | The Ottawa Hospital (healthcare service) | Canada | Paper | 2014 | 5 | 55.4 |
Table 2.
Overview of studies piloting and/or evaluating a selection of decision aids (n = 7)
| Decision aid ref no. | Title | Treatment options | Sample | Theoretical background/developmental framework | Study design | Outcome variables | Findings |
|---|---|---|---|---|---|---|---|
| 1 | Dialysis Decision Aid booklet: Making the right choices for you | Four dialysis options—Home HD Hospital Dialysis, Automated PD, Continuous Ambulatory PD | 105 Usual Care and 84 + decision aid patients | Review of clinical guidelines, service frameworks and existing patient information; patient and professional surveys of dialysis choices and kidney disease experience using decision analysis and behavioural decision support guidance | Prospective, randomized pre- and post-test with historic controls | Sample and clinical characteristics, patient-reported health-related QoL (EQ-5D); usefulness of information: ease to read, understanding of illness, treatments and decision, sufficient to make a decision, satisfaction with care; use of decision aid. Decision-making processes: control over choice, sharing decision with and views of others, difficulty in refusing Doctor recommendations, dialysis choice preference, knowledge, perceived seriousness and risk complications, Brief Illness Perception Questionnaire, Stage of Decision-Making, Preparation for Decision-Making, Decisional Conflict Scale | Patients valued receiving decision aid, 96% read it on their own, and/or shared with family (72%). Decision aid participants had higher scores for understanding kidney disease, reasoning about options, feeling in control, sharing decision with family than usual care group. Decision aid study uptake by staff ∼45% |
| 3 |
|
Dialysis versus conservative management | 41 participants: 19 intervention group, 22 standard care. | Ottawa decision support framework | Pragmatic randomised controlled trial | Decision regret scale, decisional conflict scale, knowledge; quality of life; preparation for decision- making; clinical characteristics | The decision aid improved knowledge of risks and benefits, improved preparedness to make a decision, had no impact on quality of life or decision regret. The study was unable to assess impact of intervention on decisional conflict. |
| 4 | My Kidneys, My Choice | Transplantation, dialysis (HD, PD, continuous ambulatory PD, automated PD) conservative care |
|
Concept development, engagement of relevant stakeholders, international literature review, structured brainstorming, document development and critical review; review of IPDAS guidelines |
|
Patient evaluation: knowledge, fears, decision-making Health Professional: use of decision aid, intention/barriers to use, supporting the understanding of options, assisting understanding of the patients’ priorities and for supporting decision-making |
|
| 5 | Choosing dialysis: empowering patients for choices on renal replacement therapy | HD versus PD | 70 control group: 63 intervention group | Literature review, US Renal Data System data, results from previous studies by research team, a multi-stakeholder panel reviewed and refined decision aid, IPDAS checklist | Randomized controlled trial | Treatment preference, decisional conflict, decision self-efficacy, preparation for decision-making and knowledge | Improved knowledge, better preparation for Decision-making and reduced decisional conflict but no significant improvement in decision self-efficacy |
| 6 | Dialysis Choice | Four dialysis options—home HD, hospital HD, PD, assisted PD | 137 tested decision aid intervention; 16 patients completed questionnaire | Elwyn et al. (2012) model for shared decision-making; IPDAS guidelines; based on ‘Option grid’ (Prichard and Thomas, 2012) My Kidneys, My Choice [13] and YoDDA [8]; literature review and patient interviews | Feasibility and piloting—prospective study using survey methods |
|
Increase in home dialysis, patients perceived shared decision-making occurred, patients had good knowledge and readiness scores |
| 7 | Option Grid | Four dialysis options, conservative management and transplant | 65 patients at Time 1 and 39 patients at Time 2 | Option Grid template (Elwyn et al., 2012) | Pre- and post-test | DQM | Increased knowledge and increased readiness to make a decision |
| 13 | My Life, My Dialysis Choice | Four dialysis options—PD, Standard HD (in-centre), Daily HD, Nocturnal HD | 106 comments from ‘consumers’ once launched online | Modification and refinement of previous research conducted at Medical Education Institute, brainstorming/pilot feedback agreement on content | Developmental article | Written feedback | Feedback incorporated in to decision aid to improve content |
These have now been corrected online.
doi: 10.1093/ndt/gfaa315