The majority of palliative care provision occurs in general practice, yet only 9% of palliative care clinical trials were conducted in this setting. Evidence from hospital and specialist settings is not readily transferable to general practice, as the population, context and care processes are vastly different. Conducting interventional palliative care research in general practice settings is subject to many challenges and barriers. This narrative review aims to describe the factors influencing the conduct of interventional research in general practice settings for patients with palliative care needs.
ABSTRACT Background The Utrecht Symptom Diary (USD) is a Dutch and adapted version of the Edmonton Symptom Assessment System, a patient‐reported outcome measurement (PROM) tool to asses and monitor symptoms in cancer patients. This study analyses the validity and responsiveness of the USD and the cutoff points to determine the clinical significance of a symptom score. Methods Observational longitudinal cohort study including adult in‐ and outpatients treated in an academic hospital in the Netherlands who completed at least one USD as part of routine care (2012‐2019). The distress thermometer and problem checklist (DT&PC) was used as a reference PROM. Content, construct and criterion validity, responsiveness, and cutoff points are shown with prevalences, area under receiver operating characteristic (ROC) curve, Chi‐squared test, Wilcoxon signed‐rank test, and positive and negative predictive values, respectively. Results A total of 3913 patients completed 22 400 USDs. Content validity was confirmed for all added USD items with prevalences of ≥22%. All USD items also present on the DT&PC demonstrated a good criterion validity (ROC >0.8). Construct validity was confirmed for the USD as a whole and for the items dry mouth, dysphagia and well‐being ( P < .0001). USD scores differed significantly for patients when improving or deteriorating on the DT&PC which confirmed responsiveness. Optimal cutoff points (3 or 4) differed per symptom. Conclusion The USD is a valid 12‐item PROM for the most prevalent symptoms in cancer patients, which has content, criterion, and construct validity, and detects clinically important changes over time, in both curative and palliative phase.
Background: Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. Aims: This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care. Design: Retrospective cohort study. Settings/Participants: Data were collected from Dutch hospice patient’s clinical records and hospice surveys, detailing hospice structures, patient clinical characteristics and care processes. Results: 662 patients were included from 42 hospices, mean age 76.1 years. Hospices were categorised according to their care structures - structured clinical documentation and multidisciplinary meetings. Patients receiving care in hospices with structured multidisciplinary meetings had an increased quantity of documented care processes per patient on admission through identification (median 4 vs 3, P < .001), medication (2 vs 1, P = .004) and non-medication (1 vs 0, P < .001) interventions, monitoring (2 vs 1, P < .001) and evaluation (0 vs 0, P = .014), and prior to death. Similar increases were identified for patients who received care in hospices with structured documentation upon admission, but these changes were not consistent prior to death. Conclusions: This study details that the care structures of documentation and multidisciplinary meetings are associated with increased quantity and breadth of documentation of care processes in hospice care. Employing these existing structures may result in improvements in the documentation of patient care processes, and thus better communication around patient care.
In palliative care, caregivers often lack words and competences to discuss patients' needs in social and spiritual dimensions. The Utrecht Symptom Diary-4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social, and spiritual dimensions and to optimize communication between patients and caregivers.To assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance, and comprehensiveness.An explorative qualitative study was conducted using in-depth semistructured interviews and thematic analysis. Twelve participants (male N = 7, 53-87 years old) with an estimated life expectancy of less than one year were recruited in two home care services: a general hospital and a hospice.The instructions, items, and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life, and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing.The USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs.
Providing the right care for each individual patient is a key element of quality palliative care. Complexity is a relatively new concept, defined as the nature of patients' situations and the extent of resulting needs. Classifying patients according to the complexity of their care needs can guide integration of services, anticipatory discussions, health service planning, resource management and determination of needs for specialist or general palliative care. However, there is no consistent approach to interpreting and classifying complexity of patient needs.The aim of this article is to identify and describe classification systems for complexity of patient care needs in palliative care.Narrative systematic review (PROSPERO registration number CRD42020182102).MEDLINE, Embase, CINAHL and PsychINFO databases were searched without time limitations. Articles were included that described classification systems for complexity of care requirements in populations with palliative care needs.In total, 4301 records were screened, with nine articles identified reporting the use of patient classification systems in populations with palliative care needs. These articles included the use of six classification systems: HexCom, Perroca Scale, AN-SNAP, Hui Major Criteria, IDC-Pal and PALCOM. These systems were heterogenous in the manner they determined complexity of care needs. The HexCom and IDC-Pal systems contained items that covered all domains of complexity as described by Hodiamont; personal, social support, health care team and environment.Although six classification systems have been developed, they access differing aspects of care needs and their application has been limited. The HexCOM and IDC-Pal systems offer the broadest determinations of complexity from an individual perspective. Further research is needed to apply these systems to populations external to those in which they were developed, and to appreciate how they may integrate with, and impact, clinical care.
