'Nobody knows me better than me' : the development and pilot-testing of a patient-targeted complex intervention to prepare patients to participate in shared decision-making

• Main Author: Joseph-Williams, Natalie J.
• Published: Cardiff University 2015
• Subjects: 616.8; R Medicine (General)
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.681270

Clinicians are ‘medical knowledge experts’ who can use their training, their experience, and evidence based medicine to diagnose and determine healthcare options available to patients, but patients are ‘personal preference experts’. Shared decision-making (SDM) depends on the combination of the different clinician and patient expertise, but to date efforts to increase SDM have largely not addressed how to enable patients to contribute their expertise to the process. The work in this thesis describes the development and pilot-testing of a theory-based intervention, which aims to prepare patients to participate in SDM. Development and pilot-testing was guided by the MRC’s framework for developing complex interventions. A systematic review revealed patient-reported barriers and facilitators to participating in SDM (key barriers included knowledge and perceived power imbalance) and a literature review found that existing interventions do not sufficiently address patient-reported barriers; thus there was scope to develop on more comprehensive theory-based intervention. The Behaviour Change Wheel guide was used to develop a theory-based intervention: an 8-page booklet entitled ‘Your Health, Your Choice’. Pre-testing with lay users, clinicians and organisational representatives revealed positive responses to the booklet’s key messages and design. Preliminary pilot-testing in a breast care setting showed evidence of high reach, dose and usage, and potential for the intervention to change patients attitudes towards the patient role in consultations (i.e. should patients be involved in SDM). However, the booklet had less impact on patients’ perceptions of whether clinicians want patients to become more involved (i.e. would patients be able to become involved.) Overall, preliminary findings suggest that the intervention could be a useful tool for preparing patients for SDM and for changing patients’ attitudes towards patient involvement. However, preparation for SDM must be followed by enablement by willing and skilled clinicians, and delivered within a supportive organisation.