Table 6 Views of respondents on the use of PROMs in palliative care

   • "acceptance of the experience by staff in spite of initial reluctance"

   • "good information to share with staff as affirmation of care and in identifying areas of improvement"

   • "the tools turned out to be exceptionally helpful referring to our negotiations with commissioners"

Problems and barriers using tools

   • "staff sometimes take the audits as criticism and not as constructive criticism"

   • "some health professionals are not sure how to use them (PROMs) or understand the benefit of them and so consistency can be a problem - particularly if trying to look at change over time and if a different person is asking on different occasions. Sometimes the health professionals complete the tool but do not look at what it is telling them and use this to help the patient - they are just ticking the box to say that they have used them"

   • "scores don't always correspond to how the patient is feeling"

   • "some patient groups have more difficulty than others completing them e.g. hospital inpatients achieved 50% response rate whenever used patient completed tool"

Development of web-based resources

   • "updated info in regard to symptoms management, spiritual care, psychosocial interventions, including case-studies when available"

   • "recommended reading resources (research etc.)"

   • "training opportunities for multi-disciplinary staff members"

   • "list of centres using the tool for exchange of experience (or even creating control groups in terms of research)"

   • "comparative information on different tools to ease choice (as far as possibly in lay-friendly terms); access when possible to PDF or word document of the tool; contact details and requirements of use (e.g. payment); link to validation paper and other publications; accounts of researchers who used the tool"

Future development of PROMs in palliative care

   • "don't invent another one! Use/develop the ones we currently have"

   • "I think there is enough already and we should focus on identifying the best and then working out how to implement/integrate them in routine care"

   • "if there can be training on how to use the tools it would be better because it is important"

   • "keep them easy, otherwise implementation will be difficult. Tools are only as good as the people who use them, and I often prefer reading through someone's narrative account of a situation rather than looking at numbers"