Many children taking warfarin perform their international normalized ratio (INR) at home, with results phoned to a clinician who instructs warfarin dosing. Data suggest that parents can be supported to make warfarin dosing decisions themselves, a process known as patient self-management (PSM).This study aimed to determine the suitability and acceptability of warfarin PSM in children using the Epic Patient Portal.Children currently performing INR patient self-testing were eligible. Participation involved an individualized education session, adherence to the PSM program, and participation in phone interviews. Clinical outcomes (INR time in therapeutic range and safety outcomes), patient portal functionality, and family experience were assessed. The hospital human research ethics committee approved the study and consent was obtained from parents/guardians.Twenty-four families undertook PSM. The median age of children was 11 years and all children had congenital heart disease. A median of 13 INRs was uploaded to the portal per family (range, 8-47) across a 10-month period. Before PSM, the mean time the INR was in therapeutic range was 71%; this increased to 79.9% during PSM (difference: P < .001). No adverse events were encountered. Eight families participated in a phone interview. The major theme identified was empowerment; minor themes that emerged included "gaining knowledge," "trust and responsibility builds confidence," "saving time," and "resources as a safety net."This study demonstrates that communication via the Epic Patient Portal is satisfactory to families and offers a suitable option for PSM for children. Importantly, PSM empowers and builds confidence in families to facilitate management of their child's health.
Sexual assault (SA) survivors often attend sexual health clinics (SHC) for care relating to their assault. Reported rates of SA amongst SHC attendees can be high. Online sexual health services are becoming increasingly popular. Sexual Health London (SHL) is a large online sexual transmitted infection (STI) screening service. Between 1.1.20– 8.2.20, 0.5% (242/45841) (54% female, 45.6% male) of adults disclosed a recent SA when ordering an online STI testing kit. 79% (192/242) users engaged in a call back discussion initiated by the SHL team: 45% (87/192) users confirmed a SA had occurred and 53% (101/242) users denied an assault (particularly men) stating they had reported this in error. 18% (16/87) users had already reported their SA to the police/sexual assault centre, and one user accepted an onward referral. This study found a low reporting rate of SA amongst SHL users, but despite a high response rate to call backs, >50% cited they reported in error, 25% (22/87) didn’t want to discuss their SA and few accepted onward referrals. Using e-triage to screen for SA followed by service-initiated telephonic support to everyone who discloses, may not be acceptable or offer utility to all. Further evaluation of ways to engage these individuals is required.
Anaemia is a common complication of advanced disease with associated symptoms having a negative impact on quality of life. A recent national hospice audit suggested a need for improvement in the management of anaemia in hospices, with a particular focus on investigation and more restrictive use of blood. As a result, we have updated local hospice guidelines and reviewed their use to assess the impact on patient care.
Method
Alongside the introduction of updated guidelines, prospective data were collected from hospice inpatients with symptoms related to anaemia, who were being investigated for potential treatment. The data, collected over three months, included blood parameters to assess cause of anaemia and guide treatment options.
Results
Of the seven patients investigated, four were folate deficient and five had either iron deficiency or functional iron deficiency. Two were treated with folate replacement; one subsequently deteriorated rapidly. One was too unwell to be treated and the folate level improved in one without treatment. Four out of six patients (one not measured) had reduced serum iron yet ALL ferritin results were >30 microgram/L and five had a ferritin >1000 microgram/L (range 186–3383). CRP results ranged from 95 to 206.
Conclusion
This case series highlights the complexity of interpreting results to guide management of anaemia in the hospice inpatient population. When a deficiency is identified, treatment with folic acid or iron carries less risk than treatment with blood. However, with ferritin levels this high, treatment with oral or intravenous iron is not usually recommended. Iron may not represent a frequently useful treatment option in this population. We are not aware of evidence confirming a positive clinical response to these treatments in hospice patients with complex underlying aetiologies contributing to anaemia. We believe this highlights a need for research to demonstrate clinical benefit to support these treatments.
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