Research-Informed Patient Involvement Interventions

Patient Decision Aid & Shared Decision Making

 

Kidney Resource, Contact & Publications    

Dialysis Choices booklet & decision coaching 2020

ResCenPI contact: jeanette.finderup@skejby.rm.dk 

https://kidneyresearchuk.org/kidney-health-information (2020 update TBC)

ResCenPI contact: h.l.bekker@leeds.ac.uk

  • Lambie M et al. Risks of Encapsulating Peritoneal Sclerosis Accounting for the Competing Risk of Death. Nephrology Dialysis and Transplant. 2019. 34: 1585-1591 https://doi.org/10.1093/ndt/gfz034
  • Brown E et al. Supportive Care Communication Strategies to Improve Cultural Competence in Shared Decision Making. Clin J Am Soc Nephrol August, 2016. doi: 10.2215/CJN.13661215
  • Durand M-A et al. Can we routinely measure patient involvement in treatment decision making in chronic kidney care? A service evaluation in 27 renal units in the UK. Clinical Kidney Journal. 2016; 1-8.
  • Winterbottom AE et al. Patient acceptability of the Yorkshire Dialysis Decision Aid (YoDDA) Booklet: a prospective non-randomised comparison study across 6 predialysis services. Perit Dial Int. 2016 Jul-Aug;36(4):374-81
  • Winterbottom AE et al. Patient acceptability of the Yorkshire Dialysis Decision Aid (YoDDA) Booklet: a prospective non-randomised comparison study across 6 predialysis services – supplementary materials. Peritoneal Dialysis International. 2016; 36 (4)
  • Winterbottom AE, Bekker HL, Conner M, Mooney A. Choosing Dialysis Modality: decision making in a chronic disease context. Health Expectations. 2014; 17: 5: 710-723.
  • 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. 2012; 27: 325-331
  • Bekker HL, Winterbottom A, Mooney A. Patient information and decision making processes (editorial). British Journal of Renal Medicine. 2009; 14: 28-30.
  • Winterbottom A, Bekker HL, Conner Mark, Mooney A, Evaluating the quality of patient information provided by Renal Units across the UK. Nephrology, Dialysis and Transplantation. 2007; 22: 2291-2296.     

https://www.kidneyresearchyorkshire.org.uk/home/yodca/ (sept 2020)

ResCenPI contact: h.l.bekker@leeds.ac.uk 
  • Winterbottom AE et al. Kidney Disease Pathways, Options and Decisions (KD-POD): An Environmental Scan of International Patient Decision Aids (PtDA). Nephrol Dial Transplant (2020) 1–11. 10.1093/ndt/gfaa102  
  • Winterbottom AE et al Critical review of leaflets about conservative management used in UK renal services. Journal of Renal Care. 8th April 2020.  10.1111/jorc.12327
  • Winterbottom AE, Bekker HL, Ziegler L. Hipkiss V, Williams R, Russon L, Mooney A. The Yorkshire Dialysis vs Conservative-management Decision Aid (YoDCA): study protocol. Journal of Kidney Care 2018; 2: 179-185.    
 

Multiple Sclerosis/ NeurologicalResource, Contact & Publications


https://crimson.leeds.ac.uk/wp-content/uploads/sites/51/2019/12/UOL169_CRIMSON-A4-Brochure_WEB.pdf (TBC Oct 2020)

ResCenPI contact: h.l.bekker@leeds.ac.uk 

  • Webb EJD, et al. The impact of reproductive issues on preferences of women with relapsing multiple sclerosis for disease modifying treatments. The Patient. Oct.2020 DOI: 10.1007/s40271-020-00429-4   
  • Manzano A, et al. Patient Perspective on Decisions to Switch Disease-Modifying Treatments in Relapsing-Remitting Multiple Sclerosis. Multiple Sclerosis and Related Disorders. Novemeber:46:2020 OI:https://doi.org/10.1016/j.msard.2020.102507
  • Manzano A, et al. Impact of Communication on First Treatment Decisions in People with Relapsing-Remitting Multiple Sclerosis. Patient Education and Counselling. 11th may 2020. oi.org/10.1016/j.pec.2020.05.014    
  • Eskyte I, et al. Understanding treatment decisions from the perspective of People with Relapsing Remitting Multiple Sclerosis: A critical interpretive synthesis. Multiple Sclerosis and Related Disorders. 2019. 27: 370-377    

Cancer                                 Resource, Contact & Publications  
   

https://cancerfertilityandme.org.uk/  (July 2020)    

ResCenPI contact: h.l.bekker@leeds.ac.uk   

  • Mahmoodi N, Bekker HL, King NV, Hughes J, and Jones GL on behalf of the Cancer, Fertility and Me research team. Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan? BMC Medical Informatics and Decision Making. 2018; 18:104 (accepted 26th Oct. 2018)
  • Jones GL, et al. Observational study of the development and evaluation of a fertility preservation patient decision aid for teenage and adult women diagnosed with cancer: The Cancer, Fertility and Me research protocol. BMJ open 2017:7     
Obstetrics & GynaecologyResource, Contact & Publications

Termination Methods for Early Pregnancy Decision Support Leaflet (2003)

ResCenPI contact: h.l.bekker@leeds.ac.uk

  • 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. British Journal of Obstetrics and Gynaecology. 2006; 113: 688 - 695.    
  • Wong SM, Bekker HL, Thornton JG, Gbolade B. Choices about termination method: assessing the quality of patient information in England and Wales. BJOG. 2003;110:263-266.      

Prenatal Diagnosis Testing Decisions After Down Syndromme Screening.

ResCenPI contact: h.l.bekker@leeds.ac.uk

  • 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. Prenatal Diagnosis. 2004; 24: 265-275.   
  • Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process and outcome. Patient Education and Counselling. 2003; 50: 323-329. 
  • Bekker HL. Genetic screening: facilitating informed choices. (p. 926-930). In (Eds) Cooper DN, Thomas N. Nature Encyclopaedia of the Human Genome. (2003). New York: Nature Publishing Group - Macmillan Publishers Ltd.     
Pregnancy & Multiple Sclerosis https://crimson.leeds.ac.uk/wp-content/uploads/sites/51/2019/12/UOL169_CRIMSON-A4-Brochure_WEB.pdf
Fetility & Cancer https://cancerfertilityandme.org.uk/      

Patient Reported Outcome & Self-Management Support

Under construction...    

Involving Patients as Partners in the Research Process

Under construction...    

Patient Involvement Intervention & Complex Intervention Framework

Framework & MeasuresResource, Contact & Publications

MIND-IT Framework to guide intervention design and research.

ResCenPI contact: h.l.bekker@leeds.ac.uk

  • Brown E, et al. Supportive Care Communication Strategies to Improve Cultural Competence in Shared Decision Making. Clin J Am Soc Nephrol August, 2016.
  • Breckenridge K, 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; 30: 1605-1614.
  • Légaré F et al. Training health professionals in shared decision-making: An international environmental scan. Patient Education and Counselling. 2012: 88: 159-169. 
  • Légaré F, et al. How can continuing professional development better promote shared decision-making? Perspectives from an international collaboration. Implementation Science. 2011. 6:68
  • Bekker HL. The loss of reason in patient decision aid research: do checklists affect the validity of informed choice interventions? Patient Education and Counseling 2010; 78:357-364.
  • Bekker HL. Chapter 7: Using decision making theory to inform clinical practice. (2009) In (eds) Elwyn G and Edwards A. Shared Decision Making - Achieving Evidence-based patient choice. London: OUP
  • Bryant L, et al. The Lure of Patient Choice. British Journal of General Practice, 2007; 57:822-826.
  • Bekker HL et al. Understanding why decision aids work: linking process and outcome. Patient Education and Counselling. 2003; 50: 323-329.
  • Bekker H, et al Informed decision making: an annotated bibliography and systematic review. (1999) UK: Health Technology Assessment Number 3. NHS R&D    
 

SHARED: A Patient Reported Measure of Shared Decision Making

ResCenPI contact: h.l.bekker@leeds.ac.uk  

  • Bekker et al. Psychometric testing of SHARED A Patient Reported Measure of Shared Decision Making. 10th International Shared Decision Making bi-annual conference, Quebec, CA (abstract 59 https://fourwaves-sots.s3.amazonaws.com/static/media/uploads/2019/06/28/isdm2019-oralsessionsbooklet-2019-06-28.pdf)
  • Durand M-A, et al. Can we routinely measure patient involvement in treatment decision making in chronic kidney care? A service evaluation in 27 renal units in the UK. Clinical Kidney Journal. 2016; 1-8.
  •   Nye A on behalf of the NHS Advancing Quality Alliance. Your Health, Your Decision. A report from the creating a receptive culture - shared decision making project, Right Care NHS 2011-13 (UK)    

Standards for Universal reporting of Patient Decision Aid Evaluation Studies: The Development of SUNDAE Checklist

ResCenPI contact: h.l.bekker@leeds.ac.uk  

  • Sepucha K, et al. Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist. BMJ Qual Saf 2018; 27:380-388. (accepted 13 August 2017).
  • Sepucha K, et al. Explanation and elaboration of the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) guidelines: rationale and examples of high quality reporting from patient decision aid evaluation reports. BMJ Quality & Safety. 2018; 27:389-412. (accepted 13 August 2017).doi: 10.1136/bmjqs-2017-006985
  • Bekker HL, et al. Do personal stories make patient decision aids more effective: a critical review of evidence and theory? BMC Medical Informatics and Decision Making. 2013: 13 (Suppl2):S9
  • Barratt A, et al.  IPDAS Collaboration Background Document Chapter C: Presenting Probabilities. Published online 2005 (http://ipdas.ohri.ca/resources.html)
  • Bekker HL, et al. Is anxiety an appropriate measure of decision aid effectiveness: a systematic review? Patient Education and Counselling. 2003; 50: 255-262