Design and development of an electronic system for pain reporting in palliative care Dr Matthew Allsop, Dr Sally Taylor, Prof Rick Jones, Prof Mike Bennett, Dr Bridgette Bewick Academic Unit of Palliative Care Leeds Institute of Health Sciences University of Leeds United Kingdom
IMPACCT is independent research funded by the National Institute of Health Research (NIHR). The views expressed throughout this presentation are those of the authors and not necessarily those of the NHS, NIHR or the Department of Health. The NIHR had no role in the study design, collection, analysis or interpretation of the data, writing the presentation, or the decision to submit the article for dissemination. The views and opinions expressed in this presentation are those of the authors and not necessarily those of the NHS, the Department of Health, or the NIHR.
IMPACCT Project Team Improving the Management of Pain from Advanced Cancer in the CommuniTy
Background An information and communication technology (ICT) intervention is one component to explore in improving pain management Exploratory work to develop system for use in a feasibility study A literature review carried out by research team 1 : ICT systems are being developed for electronic symptom reporting Applied across different stages of the cancer trajectory Research in palliative care at an early stage 1 Allsop MJ, Taylor S, Mulvey MR, Bennett MI, Bewick BM. Information and communication technology for managing pain in palliative care: a review of the literature. BMJ Supportive and Palliative Care 2014.
System development User involvement methodology Health professionals IMPACCT system Patients
Design Process
Project status Currently analysing data Preparing to start in June 2014
Patient perspective How do patients report pain currently? Advanced cancer patients with pain 20 patients to complete a paper diary for three weeks Record their pain ratings daily in week one, then at their discretion for the remaining two weeks (feasibility of reporting pain) Face-to-face interviews conducted with all participants to explore how patients found the experience of recording pain (processes of reporting)
Health professional perspective Which pain data are currently used by health professionals when assessing patients in routine practice? 200 community-based health professionals in the region to complete online survey exploring current pain assessment practice with palliative care patients 15 health professionals survey respondents asked to participate in face-to-face interviews Motivation behind health professionals use of systems for routine capture and communication of pain data (existing systems and processes)
Experience so far patients Recruitment of patients to the paper diary study encountered slow recruitment and regular instances of attrition Issues with recruitment in oncology and community leading to biases in patients from specialist palliative care Patients withdrew after initial recruitment for number of reasons: decline in health, inability to concentrate, dislike of completing forms, or thinking that pain levels were too low to participate The research nurse has suggested that duration of time and nature of the task may have both impacted recruitment and retention of patients
Experience so far health professionals Multi-disciplinary nature of palliative care teams has required different strategies for recruiting each group more time consuming than anticipated Palliative care doctors Learning group mailing list General practitioners Local primary care research network District nurses District Nursing Clinical Development Manager Clinical nurse specialists - Cancer research network chair Not comprehensive lists and difficult to track number of contacts to whom the survey had been sent
Questions and challenges The role of caregivers is integral to symptom management for some patients. How might caregiver perspectives be incorporated alongside patients into the design of electronic systems for palliative care? How can planning take account of who is most likely to benefit from an intervention? What other research areas might be useful to draw on to inform the development of electronic systems for palliative care (such as alcohol or weight loss online interventions?)
Contact: Dr Matthew Allsop Email: m.j.allsop@leeds.ac.uk Academic Unit of Palliative Care Leeds Institute of Health Sciences, University of Leeds, UK