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MEASURING SHARED DECISION-MAKING IN ROUTINE CLINICAL PRACTICE AMONGST PATIENTS APPROACHING ESKD: A PILOT AUDIT
Tomson C (12) Durand M (1), Bekker H (2), Braddon F (3), Casula A
(3) Cullen R (3), Elias R (4), Ferraro A (5), Jain N (6), Metcalfe W (7), Mooney A (8), Nye A (9), Thomson R (10), WIllan P (11)
1: University of Hertfordshire 2: Institute of
Health Sciences, University of Leeds 3: UK Renal Registry, Bristol 4: Kings'
College Hospital, London 5: Nottingham University Hospitals NHS Trust 6:
Kidney Research UK 7: Scottish Renal Registry 8: St James University Hospital, Leeds 9: Advancing Quality Alliance, Salford 10: Institute of Health and Society, University of Newcastle upon Tyne 11: Patient and Carer Network, Royal College of Physicians of London: North Bristol NHS Trust
Background: Ensuring patients’ preferences are elicited and taken into account when making treatment choices - shared decision-making (SDM) – is explicitly recommended by the National Service Framework, the NHS Constitution, and NICE CG 138. SDM increases the likelihood of patient preferences being integrated systematically into treatment choices. Marked geographical variation in use of different renal replacement therapy (RRT) modalities is indirect evidence that the preferences of physicians, rather than patients, may drive choice in many centres. As part of a national programme (the ‘Call to Action’) to accelerate the adoption of SDM, the UKRR was funded to develop a programme for routine measurement of SDM amongst patients with advanced kidney disease.
Aim: A pilot audit to a) identify patient reported experience measures of SDM, and b) investigate the acceptability and practicability of systematically auditing patient experiences of SDM.
Methods: Multi-disciplinary experts developed a questionnaire capturing ESKD patients’ experiences of making transplant, dialysis and conservative care choices, assessing: demographic details, information sources, decision aid use, treatment choices offered/ chosen, and decision-making process instruments, Control Preference Scale (Degner et al, 1997), SHARED (Bekker et al, 2012), and SURE (O’Connor and Légaré, 2010). Nurses from 31 English renal units taking part in the NHS Kidney Care projects on care planning or embedding patient decision aids were approached and invited to audit all their eligible patients’ experiences of SDM, and to return completed questionnaires and recruitment sheets weekly to the UK Renal Registry. Eligible patients were those about to implement an RRT decision or those who had just started RRT without prior preparation.
Results: From January-March 2013, 385 questionnaires from 21 of 31 centres were submitted. The observed/expected ratios of returned questionnaires varied from 8% to 735% when comparing those returned from each centre with the expected number of incident patients (from UKRR data). The highest-recruiting centre subsequently reviewed their patients against the selection criteria and withdrew 80 questionnaires. The observed/expected ratios for 305 still varied from 8% to 318%; 19% were referred within 90 days of their treatment decision. Mean age was 66 years, 67% were male, 90% Caucasian; of 213 patients starting or about to start dialysis, 36% were planning PD. In addition to usual information sources (doctors, nurses, written materials), 27.8% had accessed a website and 24.2% a Patient Decision Aid. Participants’ experiences of shared decision making were active or shared (93.9% Control Preference Scale), informed (84.9% SURE) and/or best-choice-for-me (96.1% SHARED). Those who had used a decision aid were more likely to experience a SHARED decision (p=0.025) than those receiving usual information.
Discussion: This pilot found that services can capture patient reported experience measures of shared decision making for use in service quality evaluation. These results appear to be encouraging evidence of a high quality of SDM in those centres supplying data. However, we are concerned about selection bias (with more activated, well-prepared, articulate patients being approached by nurses, in centres more interested in SDM); social acceptability bias (patients supplying the ‘right’ answers); and administration of the questionnaire to patients earlier or later in the decision-making process than intended. Further audit cycles will be designed to address these concerns[CT1].
[CT1]I’ve re-inserted my concluding phrase because I think it captures the need for further work better! I don’t think it does any harm to advertise the fact that we are fully aware of the limitations of the data.