Objectives: Question prompt lists (QPLs) support patients and family to ask questions they consider important during conversations with clinicians. We aimed to evaluate how a QPL developed for... Show moreObjectives: Question prompt lists (QPLs) support patients and family to ask questions they consider important during conversations with clinicians. We aimed to evaluate how a QPL developed for specialist palliative care is used during consultations and is perceived by patients and family, and how non-specialist clinicians would use the QPL. We further developed the QPL using these perspectives. Methods: The QPL is part of a conversation guide on palliative care. Patients and family were asked to select topics and questions before consultation with a palliative care consultant. This qualitative study (2016-2018) included 18 interviews with patients and family who had used the QPL, 17 interviews with non-specialist clinicians and 32 audiotaped consultations with palliative care consultants. The data were analysed thematically and iteratively to adjust the QPL accordingly. Results: All participants considered the QPL elaborate, but recommended keeping all content. Patients and family found that it helps to structure thoughts, ask questions and regain a sense of control. They also felt the QPL could support them in gathering information. Although it could evoke strong emotions, their real challenge was being in the palliative phase. Clinicians considered the QPL especially helpful as an overview of possible discussion topics. During audiotaped consultations, topics other than those selected were also addressed. Conclusion: By using the QPL, patients and family felt empowered to express their information needs. Its use may not be as unsettling as clinicians assume. Nevertheless, clinicians who hand out the QPL should introduce the QPL properly to optimise its use. Show less
Stap, L. van der; Heij, A.H. de; Heide, A. van der; Reyners, A.K.; Linden, Y.M. van der 2021
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
Peeters, M.; Ottenheijm, G.; Bienfait, P.; Eekers, D.; Gijtenbeek, A.; Hanse, M.; ... ; Taphoorn, M. 2021
Introduction Routine assessment of patient-reported outcomes (PROs) in oncology has shown to improve the quality of the delivered care and to prolong survival. However, for successful... Show moreIntroduction Routine assessment of patient-reported outcomes (PROs) in oncology has shown to improve the quality of the delivered care and to prolong survival. However, for successful implementation of routine assessment of PROs, more knowledge on their usability in clinical practice is needed. Objective This study aimed to cross-sectionally assess the perspective of patients and clinicians on the practicality of routinely measuring PROs in clinical practice for glioma patients. Methods Semistructured interviews were conducted evaluating the role of healthcare professionals (HCP) in discussing results of PRO measures (PROMs), and the preferred topics, methods and frequency of PRO assessment. Glioma patients, their proxies and HCPs involved in the treatment of glioma patients from eight centres in the Netherlands were included. Results Twenty-four patients, 16 proxies and 35 HCPs were interviewed. The majority of patients, proxies and HCPs (92%, 81% and 80%, respectively) were willing to discuss PRO results during consultations. Although HCPs prefer that results are discussed with the nurse specialist, only one-third of patients/proxies agreed. Functioning of daily life was considered important in all three groups. Most participants indicated that discussion of PROM results should take place during standard follow-up visits, and completed at home about 1 week in advance. On group level, there was no preference for administration of questionnaires on paper or digitally. Lastly, all centres had staff available to send questionnaires on paper. Conclusion This study shows that routine assessment of PROs is desired by patients, proxies and HCP's in neuro-oncological care in Dutch hospitals. Show less
Objectives To evaluate the impact of provision and timing of palliative care (PC) on potentially inappropriate end-of-life care to patients with cancer in a mixed generalist—specialist PC model.... Show moreObjectives To evaluate the impact of provision and timing of palliative care (PC) on potentially inappropriate end-of-life care to patients with cancer in a mixed generalist—specialist PC model. Method A retrospective population-based observational study using a national administrative health insurance database. All 43 067 adults in the Netherlands, who were diagnosed with or treated for cancer during the year preceding their death in 2017, were included. Main exposure was either generalist or specialist PC initiated >30 days before death (n=16 967). Outcomes were measured over the last 30 days of life, using quality indicators for potentially inappropriate end-of-life care. Results In total, 14 504 patients (34%) experienced potentially inappropriate end-of-life care; 2732 were provided with PC >30 days before death (exposure group) and 11 772 received no PC or ≤30 days before death (non-exposure group) (16% vs 45%, p<0.001). Most patients received generalist PC (88%). Patients provided with PC >30 days before death were 5 times less likely to experience potentially inappropriate end-of-life care (adjusted OR (AOR) 0.20; (95% CI 0.15 to 0.26)) than those with no PC or PC in the last 30 days. Both early (>90 days) and late (>30 and≤90 days) PC initiation had lower odds for potentially inappropriate end-of-life care (AOR 0.23 and 0.19, respectively). Conclusion Timely access to PC in a mixed generalist—specialist PC model significantly decreases the likelihood of potentially inappropriate end-of-life care for patients with cancer. Generalist PC can play a substantial role. Show less
Gijsberts, M.J.H.E.; Steen, J.T. van der; Hertogh, C.M.P.M.; Deliens, L. 2020
ObjectiveTo examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors... Show moreObjectiveTo examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision.MethodsA cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians' provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis.ResultsThe response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident's religiousness, fear of dying and involvement of a healthcare chaplain.ConclusionMost physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician's own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents. Show less
