How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design

BACKGROUND: Clinicians request guidance to aid the routine use and interpretation of Patient Reported Outcome Measures (PROMs), but tools are lacking. We aimed to develop a Clinical Decision Support Tool (CDST) focused on information needs, family anxiety, depression, and breathlessness (measured using the Palliative care Outcome Scale (POS)) and related PROM implementation guidance. METHODS: We drafted recommendations based on findings from systematic literature searches. In a modified online Delphi study, 38 experts from 12 countries with different professional backgrounds, including four patient/carer representatives, were invited to rate the appropriateness of these recommendations for problems of varying severity in the CDST. The quality of evidence was added for each recommendation, and the final draft CDST reappraised by the experts. The accompanying implementation guidance was built on data from literature scoping with expert revision (n = 11 invited experts). RESULTS: The systematic literature searches identified over 560 potential references, of which 43 met the inclusion criteria. Two Delphi rounds (response rate 66 % and 62 %; n = 25 and 23) found that good patient care, psychosocial support and empathy, and open communication were central to supporting patients and families affected by all POS concerns as a core requirement. Assessment was recommended for increasing problems (i.e. scores), followed by non-pharmacological interventions and for breathlessness and depression, pharmacological interventions. Accompanying PROM implementation guidance was built based on the 8-step International Society for Quality of Life Research framework, as revised by nine (response rate 82 %) experts. CONCLUSIONS: This CDST provides a straightforward guide to help support clinical care and improve evidence-based outcomes for patients with progressive illness and their families, addressing four areas of clinical uncertainty. Recommendations should be used flexibly, alongside skilled individual clinical assessment and knowledge, taking into account patients’ and families’ individual preferences, circumstances, and resources. The CDST is provided with accompanying implementation guidance to facilitate PROM use and is ready for further development and evaluation. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12916-015-0449-6) contains supplementary material, which is available to authorized users.