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Clinical decision support system to optimise symptom management in palliative medicine: focus group study
  1. Lotte van der Stap1,
  2. Albert H de Heij2,
  3. Agnes van der Heide3,
  4. Anna KL Reyners4 and
  5. Yvette M van der Linden5
  1. 1 Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, The Netherlands
  2. 2 Center of Expertise for Palliative Care, University Medical Center Groningen, Groningen, The Netherlands
  3. 3 Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
  4. 4 Center of Expertise for Palliative Care/Department of Medical Oncology, University Medical Center Groningen, Groningen, The Netherlands
  5. 5 Center of Expertise in Palliative Care/Department of Radiotherapy, Leiden University Medical Center, Leiden, The Netherlands
  1. Correspondence to Dr Lotte van der Stap, Center of Expertise in Palliative care, Leiden University Medical Center, Leiden, 2333 ZA, The Netherlands; l.vanderstap{at}lumc.nl

Abstract

Objectives Suboptimal symptom control in patients with life-limiting illnesses is a major issue. A clinical decision support system (CDSS) that combines a patient-reported symptom assessment scale (SAS) and guideline-based individualised recommendations has the potential to improve symptom management. However, lacking end-user acceptance often prevents CDSS use in daily practice.

We aimed to evaluate the acceptability and feasibility of a palliative care CDSS according to its targeted end-users.

Methods Six focus groups with different groups of stakeholders were conducted: (1) patient representatives; (2) community nurses; (3) hospital nurses; (4) general practitioners; (5) hospital physicians and (6) palliative care specialists. Audiotapes were transcribed verbatim and thematically analysed.

Results Fifty-one stakeholders (6–12 per focus group) participated. Six themes were discussed: effect, validity, continuity, practical usability, implementation and additional features. All participants expected a CDSS to improve symptom management, for example, by reminding clinicians of blind spots and prompting patient participation. They feared interference with professional autonomy of physicians, doubted the validity of using a patient-reported SAS as CDSS input and thought lacking care continuity would complicate CDSS use. Clinicians needed clear criteria for when to use the CDSS (eg, life-limiting illness, timing in illness trajectory). Participants preferred a patient-coordinated system but were simultaneously concerned patients may be unwilling or unable to fill out an SAS.

Conclusions A palliative care CDSS was considered useful for improving symptom management. To develop a feasible system, barriers for successful implementation must be addressed including concerns about using a patient-reported SAS, lacking care continuity and unclear indications for use.

  • clinical decisions
  • symptoms and symptom management
  • education and training

Data availability statement

The data that support the findings of this study are available from the corresponding author on reasonable request.

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Data availability statement

The data that support the findings of this study are available from the corresponding author on reasonable request.

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Footnotes

  • Contributors LvdS, AHdH, AvdH, AKLR and YMvdL and the collaborating partners of he MuSt-PC project were involved in study planning. All authors were involved in the conduct of the study and data analysis. LvdS drafted the manuscript and all authors critically reviewed the manuscript.

  • Funding This study was funded by a grant from ZonMw, The Netherlands Organisation for Health Research and Development (grant number 844001402). ZonMw approved the study design.

  • Disclaimer ZonMw had no role in the collection, analysis and interpretation of the data, in the writing of the report or the decision to submit the paper for publication.

  • Competing interests LvdS, AHdH, AvdH, AKLR and YMvdL report grants from ZonMw (The Netherlands Organisation for Health Research and Development), during the conduct of the study.

  • Provenance and peer review Not commissioned; externally peer reviewed.