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 ... Show moreObjectives 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. Show less
Broese, J.M.C.; Heij, A.H. de; Janssen, D.J.A.; Skora, J.A.; Kerstjens, H.A.M.; Chavannes, N.H.; ... ; Kleij, R.M.J.J. van der 2021
Background:Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for... Show moreBackground:Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically.Aim:To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes.Design:Systematic review and narrative synthesis (PROSPERO CRD42017079962).Data sources:Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing > 30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively.Results:Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients).Conclusion:Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation. Show less
