Free-text analysis of general practice out-of-hours (GPOOH) use by people with advanced cancer: an analysis of coded and uncoded free-text data.

BACKGROUND: People with advanced cancer frequently use the GP out-of-hours (GPOOH) service. Considerable amounts of routine GPOOH data are uncoded. Therefore, these data are omitted from existing healthcare datasets. AIM: To conduct a free-text analysis of a GPOOH dataset, to identify reasons for attendance and care delivered through GPOOH to people with advanced cancer. DESIGN AND SETTING: An analysis of a GPOOH healthcare dataset was undertaken. It contained all coded and free- text information for 5749 attendances from a cohort of 2443 people who died from cancer in Tayside, Scotland, from 2013-2015. METHOD: Random sampling methods selected 575 consultations for free-text analysis. Each consultation was analysed by two independent reviewers to determine the following: assigned presenting complaints; key and additional palliative care symptoms recorded in free text; evidence of anticipatory care planning; and free-text recording of dispensed medications. Inter-rater reliability concordance was established through Kappa testing. RESULTS: More than half of all coded reasons for attendance (n = 293; 51.0%) were 'other' or 'missing'. Free-text analysis demonstrated that nearly half (n = 284; 49.4%) of GPOOH attendances by people with advanced cancer were for pain or palliative care. More than half of GPOOH attendances (n = 325; 56.5%) recorded at least one key or additional palliative care symptom in free text, with the commonest being breathlessness, vomiting, cough, and nausea. Anticipatory care planning was poorly recorded in both coded and uncoded records. Uncoded medications were dispensed in more than one- quarter of GPOOH consultations. CONCLUSION: GPOOH delivers a substantial amount of pain management and palliative care, much of which is uncoded. Therefore, it is unrecognised and under-reported in existing large healthcare data analyses.

Improving palliative care in Scottish acute hospitals – a three strand approach

BackgroundHospitals remain an important and necessary place of care for people nearing the end of their lives, and in Scotland nearly 1 in 3 hospital beds are occupied by someone who will die within the next 12 months (Clark, Armstrong, Allan, et al., 2014. Palliat Med. 28:474). Despite this, resources to support improvement activity across the country remain underdeveloped and ad hoc.AimBuilding on the Best (Phase 2) a three-year, Macmillan funded project aimed to improve the experiences and outcomes for patients and families in Scotland’s hospitals.MethodsWe:Created a multidisciplinary national network for hospital specialist palliative care team (HSPCT) members.Supported a range of quality improvement projects across the country.Facilitated public engagement via the projects and other stakeholders.ResultsThe Scottish Network for Acute Palliative Care (SNAPC) was launched in Jan 2020. It facilitated the HSPCTs across Scotland to work very effectively and efficiently to collaborate and contribute to the development of COVID-19 specific palliative care guidelines;share local work nationally;and develop new collaborative connections.9/12 QI projects successfully completed in six health boards showing local improvements to the care being offered to patients and their families specifically in planning ahead and bereavement care.Public engagement activities included participation in focus groups to develop resources for introducing the ReSPECT document and feedback on bereavement follow up.ConclusionsThe successes and limitations of this project were defined by the pandemic. While the SNAPC network flourished and developed as a need for information and sharing experiences with colleagues was required, barriers to engaging with the public restricted engagement activities. A sense of urgency amongst HSPCT to improve care, an infrastructure to support information sharing and collaboration and resource to support small projects has led to impactful change in the care experiences in several hospital settings across Scotland.

A Rapid Review of Internet Mediated Research Methods with People with Dementia: Practical, Technical, and Ethical Considerations

Doing research with People with Dementia (PwD) can be challenging given that disease symptoms of anxiety, forgetfulness, and fluctuating mental capacity can make recruitment and data collection difficult. Once COVID-19 made face-toface data collection impractical, using internet-based methods became an alternative option to continue with research. However, data collection with PwD over the internet requires strategies to observe, support, and enable them to engage with research, especially with qualitative approaches. Nine articles were selected via a decade rapid scoping review (undertaken March-June 2020) to identify qualitative online methods used with PwD and associated challenges. Methods used were online interviews, clinical assessment/telemedicine, and textual analysis from blogs, forum posts, and Tweets created by PwD. Practical challenges identified: the researchers' limited ability to manage the physical and social environment. Technical challenges identified: the need for a high degree of technical support for participants prior and during data collection. Ethical challenges identified, negotiating confidentiality, obtaining valid informed consent, and ensuring data security. Implicit findings found related to how researchers perceived and treated online data retrieved from the internet and how the challenges mentioned in the included articles did not link to dementia symptoms.

Symptom burden and clinical profile of COVID-19 deaths: a rapid systematic review and evidence summary.

The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients. METHODS: We undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19. RESULTS: 12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure. CONCLUSIONS: There remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency.