Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care.

BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care. AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems. DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland. METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted. RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly. CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.

Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners.

BACKGROUND: Key Information Summaries (KIS) were introduced throughout Scotland in 2013 so that anticipatory care plans written by general practitioners (GPs) could be routinely shared electronically and updated in real time, between GPs and providers of unscheduled and secondary care. AIMS: We aimed to describe the current reach of anticipatory and palliative care, and to explore GPs' views on using KIS. METHODS: We studied the primary care records of all patients who died in 2014 in 9 diverse Lothian practices. We identified if anticipatory or palliative care had been started, and if so how many weeks before death and which aspects of care had been documented. We interviewed 10 GPs to understand barriers and facilitating factors. RESULTS: Overall, 60% of patients were identified for a KIS, a median of 18 weeks before death. The numbers identified were highest for patients with cancer, with 75% identified compared with 66% of those dying with dementia/frailty and only 41% dying from organ failure. Patients were more likely to die outside hospital if they had a KIS. GPs identified professional, patient and societal challenges in identifying patients for palliative care, especially those with non-cancer diagnoses. CONCLUSIONS: GPs are identifying patients for anticipatory and palliative care more equitably across the different disease trajectories and earlier in the disease process than they were previously identifying patients specifically for palliative care. However, many patients still lack care planning, particularly those dying with organ failure.

Hospital based palliative care in sub-Saharan Africa; a six month review from Malawi.

BACKGROUND: The World Health Organisation recognises the importance of palliative care in an African setting. Despite this services are often patchy and inconsistent, and many operate at health centre and/or community level. Few reports from hospital based palliative care services in sub-Saharan Africa exist in the current literature. As part of its activities Tiyanjane Clinic has been providing hospital based palliative care to patients at Queen Elizabeth Central Hospital, a large government tertiary referral institution, in the Southern region of Malawi since 2003, caring for patients with HIV, cancer and other non-malignant palliative diagnoses. METHODS: A retrospective review of case notes for all in-patients seen by Tiyanjane Clinic over a six month period (April-Sept 2009) was undertaken. RESULTS: A total of 177 patients were seen, for whom 137 case notes were available (77%). 58% of patients were male, 42% female. The average age of patients was 39.1 years (range 15-92 years). 54% of patients were HIV positive, with 34% on ARV drugs at the time of care. 42% of patients had HIV related diagnoses, including AIDS defining malignancies, 48% had (non AIDS related) cancers and 9% had other palliative diagnoses. The mean age of patients with HIV related diagnoses was 34 years, for cancer patients it was 48 years. Pain was the most commonly reported symptom (74%), with 56% of patients requiring oral morphine. The mean daily dose of morphine was 30 mg/day (range 9-100 mg). 65% of patients were discharged home, 26% of patients died during admission. CONCLUSIONS: The palliative care population in this setting is relatively young, especially among patients with HIV related diagnoses. HIV and cancer are the main diagnostic groups. Pain is the most commonly reported symptom, with oral morphine frequently required. Health workers require access to and knowledge of oral morphine in order to provide appropriate assistance to patients under their care.

Underreporting of side effects of standard first-line ART in the routine setting in Blantyre, Malawi.

INTRODUCTION: In the Malawi ART programme, 92% of 250,000 patients are using the standard first-line regime of stavudine-lamivudine-nevaripine. National ART reports indicate <4% experience ART side effects, much less than expected from literature. METHODS: We interviewed adult patients on standard first-line ART for at least one year, after routine visits to an urban clinic in Blantyre, Malawi. We determined the prevalence of symptoms that are common side-effects, described discrepancies between symptoms that patients reported to us and those that had been recorded by attending staff as side-effects in the point-of-care electronic monitoring system, and studied factors associated with such discrepancies. RESULTS: Of 170 participants, 75 (44%) reported at least one symptom, most common were symptoms suggesting peripheral neuropathy (n=57) and lipodystrophy (n=16). Forty-six (66%) symptomatic patients said they reported symptoms to attending ART staff. Side-effects were recorded in the clinic database for just 4 patients. Toxicity recording was too low for meaningful analysis of factors associated with discrepancies between reporting and recording of side-effects. The prevalence of symptoms indicating characteristic side-effects of the standard first-line regimen was 39% based on interviews, and 2% in the electronic monitoring system. CONCLUSION: There was gross under-recording of side-effects in this setting, mainly due to not recording by ART staff. Pressure of work and insufficient perceived benefit of side-effect recording are suspected causes. Local and national ART reports do not reflect the true toxicity of the standard first line regimen.