Patient acceptability of the yorkshire dialysis decision aid (Yodda) booklet: A prospective non-randomized comparison study across 6 predialysis services

Peritoneal Dialysis International

Volumn 36, Issue 4, 2016, Pages 374-381

  Winterbottom, Anna E ^a   Gavaruzzi, Teresa ^a   Mooney, Andrew ^b   Wilkie, Martin ^c   Davies, Simon J ^d   Crane, Dennis ^e   Tupling, Ken ^f   Baxter, Paul D ^g   Meads, David M ^a   Mathers, Nigel ^f   Bekker, Hilary L ^a  

^a UNIVERSITY OF LEEDS   (United Kingdom)

^b ST JAMES S UNIVERSITY HOSPITAL   (United Kingdom)

^c Sheffield Kidney Institute   (United Kingdom)

^d KEELE UNIVERSITY   (United Kingdom)

^e National Kidney Federation   (United Kingdom)

^f NORTHERN GENERAL HOSPITAL   (United Kingdom)

^g UNIVERSITY OF LEEDS   (United Kingdom)

Author keywords

Conservative care; Dialysis; Implementation science; Patient decision aid; Renal replacement therapy; Shared decision making

Indexed keywords

ADULT; AGED; ARTICLE; COMPARATIVE STUDY; CONTROLLED STUDY; DECISION MAKING; DIALYSIS; FEMALE; GLOMERULUS FILTRATION RATE; HEALTH CARE SURVEY; HUMAN; INTERVENTION STUDY; KIDNEY DISEASE; KIDNEY FUNCTION; KNOWLEDGE; MAJOR CLINICAL STUDY; MALE; MIDDLE AGED; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUESTIONNAIRE; SCORING SYSTEM; DECISION SUPPORT SYSTEM; HEMODIALYSIS; KIDNEY FAILURE, CHRONIC; PATIENT ATTITUDE; PATIENT EDUCATION; PATIENT REFERRAL; PROSPECTIVE STUDY; PSYCHOLOGY; PUBLICATION;

AGED; CHOICE BEHAVIOR; DECISION MAKING; DECISION SUPPORT TECHNIQUES; FEMALE; HUMANS; KIDNEY FAILURE, CHRONIC; MALE; MIDDLE AGED; PAMPHLETS; PATIENT ACCEPTANCE OF HEALTH CARE; PATIENT EDUCATION AS TOPIC; PROSPECTIVE STUDIES; REFERRAL AND CONSULTATION; RENAL DIALYSIS; SURVEYS AND QUESTIONNAIRES;

EID: 84977536741     PISSN: 08968608     EISSN: 17184304     Source Type: Journal    
DOI: 10.3747/pdi.2014.00274     Document Type: Article

References (60)

1. National Clinical Guideline Centre-CG182. Chronic kidney disease: early identification and management for adults in primary and secondary care. 2014; National Institute for Health and Clinical Excellence, UK.
2. National Clinical Guideline Centre-CG125. Peritoneal dialysis: peritoneal dialysis in the treatment of stage 5 chronic kidney disease. 2011; National Institute for Health and Clinical Excellence, UK.
3. Loud F, Gallagher H on behalf of The Kidney Alliance. Kidney health: delivering excellence. 2013; The Kidney Health Advisory Group, UK.
4. Brady M, Donoghue D. Back to the future: changes in the dialysis delivery model in the UK. Perit Dial Int 2011; 31:S63-72.
5. Van Biesen W, van der Veer SN, Murphy M, Loblova O, Davies S. Patients’ perceptions of information and education for renal replacement therapy: an independent survey by the European Kidney Patients’ Federation on information and support on renal replacement therapy. PLOS One 2014; 9:e103914.
6. Prieto-Velasco M, Bagnis CI, Dean J, Goovaerts A, Melander S, Mooney A, et al. Predialysis education in practice: a questionnaire survey of centres with established programmes. BMC Research Notes 2014; 7:730.
7. Winterbottom A, Conner M, Mooney A, Bekker HL. Evaluating the quality of patient leaflets about renal replacement therapy across UK renal units. Nephrol Dial Transplant 2007; 22:2291-6.
8. Winterbottom A, Bekker HL, Conner M, Mooney A. Choosing dialysis modality: decision making in a chronic illness context. Health expect 2014; 17:710-23.
9. Ormandy P, Hulme C. Measuring patients’ preferences and priorities for information in chronic kidney disease. Information Research 2013; 18: paper 588.
10. Morton R, Tong A, Howard K, Snelling P, Webster AC. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ 2010; 340:c112.
11. Murray MA, Brunier G, Chung JO, Craig LA, Mills C, Thomas A, Stacey D. A systematic review of factors influencing decision-making in adults living with chronic kidney disease. Patient Educ Couns 2009; 76:149-58.
12. Harwood L, Clark AM. Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies. Int J Nurs Stud 2013; 50:109-20.
13. Bekker H, Thornton JG, Airey CM, Connelly JB, Hewison J, Lilleyman J, et al. Informed decision making: an annotated bibliography and systematic review. Health Technol Assess Winchester, UK 1999; 3:1-156.
14. Bekker HL. The loss of reason in patient decision aid research: do checklists affect the validity of informed choice interventions? Patient Educ Couns 2010; 78:357-64.
15. Bekker HL, Winterbottom AE, Butow P, Dillard A, Feldman-Stewart D, Fowler J, et al. Do personal stories make patient decision aids more effective: a critical review of evidence and theory? BMC Med Inform Decis Mak 2013; 13(Suppl 2):S2-9.
16. Pieterse AH, de Vries M, Stiggelbout AM, Feldman-Stewart, D. Theory-informed design of values clarification methods: a cognitive psychological perspective on patient health-related decision making. Soc Sci Med 2013; 77:156-63.
17. Stacey D, Légaré F, Pouliot S, Kryworuchko J, Dunn S. Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis. Patient Educ Couns 2010; 80:164-72.
18. O’Connor A, Edwards E. Chapter 14: The role of decision aids in promoting evidence-based patient choice. In: Edwards A, Elwyn G, eds. Evidence-based patient choice: inevitable of impossible. Oxford, UK: Oxford University Press, 2001(220-242).
19. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014; 1:CD001431.
20. Légaré F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Affairs 2013; 2: 2276-84.
21. Elwyn G, Lloyd A, Joseph-Williams N, Elwyn G, Lloyd A, Joseph-Williams N, et al. Option grids: shared decision making made easier. Patient Educ Couns 2013; 90: 207-12.
22. Légaré F, Politi MC, Drolet R, Desroches S, Stacey D, Bekker H, the SDM-CPD team. Training health professionals in shared decision-making: an international environmental scan. Patient Educ Couns 2012; 88:159-69.
23. Bekker HL, Winterbottom A, Gavaruzzi T, Mooney A, Wilkie M, Davies S, et al. of the Yorkshire Dialysis Decision Aid (YoDDA) Research Projects. The Dialysis Decision Aid Booklet: Making The Right Choices for You. Kidney Research UK: Peterborough, UK. 2015. Available from: https://www.kidneyresearchuk.org/DialysisDecisionAid
24. Shaw C, Pitcher D, Pruthi R, Fogarty D. UK Renal Registry 16th Annual Report: Chapter 2: UK RRT Prevalence in 2012: National and Centre-specific Analyses. Nephron Clin Pract 2013; 125:29-54.
25. Britton A, McPherson K, McHee M, McPherson K, Sanderson C, Bain C. Choosing between randomised and non-randomised studies: a systematic review. Health Technol Assess 1998; 2(13):1-124.
26. Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AGK, Clay C, et al. “Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC Med Inform Decis Mak 2013; 13(Suppl 2):S14.
27. Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman, et al. Process evaluation of complex interventions: Medical Research Council guidance. Brit Med J 2015; 350:h1258.
28. Coulter A, Stilwell D, Kryworuchko J, Dolan Mullen P, Ng JC, van der Weijden T. A systematic development process for patient decision aids. BMC Med Inform Decis Mak 2013, 13(Suppl 2):S1-2.
29. Fukuhara S, Lopes AA, Bragg-Gresham JL, Kurokawa K, Mapes DL, Akizawa T, et al. held for The Worldwide DOPPS. Health-related quality of life among dialysis patients on three continents: the Dialysis Outcomes and Practice Patterns Study. Kidney Int 2003; 64:1903-10.
30. Stein A, Wild J. Kidney failure explained (4Thed.). London, UK: Class Publishing, 2010.
31. Ameling JM, Auguste P, Ephraim PL, Lewis-Boyer L, DePasquale N, Greer RC, et al. Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions. BMC Med Inform Decis Mak 2012; 12:140.
32. Fortnum D, Smolonogov T, Walker R, Kairaitis L, Pugh D. ‘My Kidneys, my Choice’ Decision Aid: empowering shared decision making. J Renal Care 2014; 41:81-7.
33. Parfeni M, Nistor I, Covic A. A systematic review regarding the association of illness perception and survival among end-stage renal disease patients. Nephrol Dial Transplant 2013; 28:2407-14.
34. Smith C, Da Silva-Gane M, Chandna S, Warwicker P, Greenwood R, Farrington K. Choosing not to dialyse: evaluation of planned non-dialytic management in a cohort of patients with end-stage renal failure. Nephron Clin Pract 2003; 95:c40-6.
35. Brown EA, Johansson L, Farrington K, Gallagher H, Sensky T, Gordon F, et al. Broadening Options for Long-term Dialysis in the Elderly (BOLDE): differences in quality of life on peritoneal dialysis compared to haemodialysis for older patients. Nephrol Dial Transplant 2010; 25:3755-63.
36. Liem YS, Bosch JL, Hunink MGM. Preference-based quality of life of patients on renal replacement therapy: a systematic review and meta-analysis. Value Health 2008; 11:733-41.
37. Griva K, Jayasena D, Davenport A, Harrison M, Newman SP. Illness and treatment cognitions and health related quality of life in end stage renal disease. Br J Health Psychol 2009; 14:17-34.
38. Winterbottom AE, Bekker HL, Conner M, Mooney A. Patient stories about their dialysis experience biases others’ choices regardless of doctor’s advice: an experimental study. Nephrol Dial Transplant 2010; 27:325-31.
39. Von Winterfeldt D, Edwards W. Decision analysis and behavioural research. Cambridge, UK: Cambridge University Press, 1993.
40. Janis IL, Mann, L. Decision making: a psychological analysis of conflict, choice and commitment. New York, USA: The Free Press, 1977.
41. Larrick RP. Chapter 16-Debiasing. In: Koehler DJ, Harvey N, eds. Blackwell handbook of judgment and decision making. Malden, MA: Blackwell Publishing; 2004.
42. Ley P. Communicating with patients: improving communication, satisfaction and compliance. London, UK: Croom-Helm, 1988.
43. Kessler S. Psychological Aspects of Genetic Counseling. VII. Thoughts on Directiveness. J Genet Couns 1992; 1:9-17.
44. Flesch R. A new readability yardstick. J Appl Psychol 1948; 32:221-33. Available from https://readability-score.com
45. Abhyankar P, Volk RJ, Blumenthal-Barby J, Bravo P, Buchholz A, Ozanne E, et al. Balancing the presentation of information and options in patient decision aids: an updated review. BMC Med Inform Decis Mak 2013; 13(2):S2-6.
46. Abhyankar P, Summers BA, Velikova G, Bekker HL. Framing options as choice or opportunity: does the frame influence decisions? Med Decis Making 2014; 34:567-82.
47. Trevena LJ, Zikmund-Fisher BJ, Edwards A, Gaissmaier W, Galesic M, Han PKJ, et al. Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Med Inform Decis Mak 2013; 13(Suppl 2):S2-7.
48. Conner M, Norman P. Chapter 1-Predicting health behaviour: a social cognition approach. In: Connor M, Norman P, eds. Predicting Health Behaviour: Research and Practice with Social Cognition Models. Berkshire, UK: Open University Press, 2005.
49. Leventhal A, Benyamini Y, Brownlee S, Diefenbach M, Leventhal E, Patrick-Miller L, et al. Chapter 1-Illness representations: theoretical foundations. In: Petrie KJ, Weinman JA, eds. Perceptions of Health and Illness. Current Research and Applications. Amsterdam, The Netherlands: Harwood Academic Publishers, 1997.
50. Horne R. Chapter 5-Representations of medication and treatment: advances in theory and measurement. In: Petrie KJ, Weinman JA, eds. Perceptions of Health and Illness. Current Research and Applications. Amsterdam, The Netherlands: Harwood Academic Publishers, 1997.
51. Tabachnick BG, Fidell LS. Using Multivariate Statistics, 6Thed. Boston: Allyn and Bacon, 2013.
52. Breckenridge K, Bekker HL, van der Veer SN, Gibbons E, Abbott D, Briançon S, et al. NDT Perspectives-How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrol Dial Transplant 2015. [Epub ahead of print]
53. Bekker HL, Thornton JG, Hewison J. Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down’s syndrome: a randomised controlled trial. Prenat Diagn 2004; 24:265-75.
54. Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process and outcome. Patient Educ Couns 2003; 50:323-9.
55. Wong SSM, Thornton JG, Gbolade B, Bekker HL. A randomised controlled trial of a decision aid leaflet to facilitate women’s choice between pregnancy termination methods. BJOG 2006; 113:688-95.
56. Devlin N, Krabbe P. The development of new research methods for the valuation of EQ-5D-5L. Eur J Health economics 2013; 14:S1-3.
57. Broadbent E, Petrie K, Main J, Weinman J. The Brief Illness Perception Questionnaire. J Psychosom Res 2006; 60:631-7.
58. O’Connor AM. User Manual-Stage of Decision Making [document on the internet]. Ottawa: Ottawa Hospital Research Institute. 2000 [Modified 2003: http://decisionaid.ohri.ca/docs/develop/User_manuals/UM_stage_decision_making.pdf; accessed 19/11/2013].
59. Graham ID, O’Connor AM. User Manual-Preparation for Decision Making Scale [document on the internet]. Ottawa: Ottawa Hospital Research Institute. 1995 [updated 2010; http://decisionaid.ohri.ca/docs/develop/User_manuals/UM_PrepDM.pdf; accessed 19/11/2013].
60. O’Connor AM. User Manual-Decisional Conflict Scale [document on the internet]. Ottawa: Ottawa Hospital Research Institute. 1993 [updated 2010; http://decisionaid.ohri.ca/docs/develop/User_manuals/UM_decisional_conflict.pdf; accessed 19/11/2013].