Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT).

BACKGROUND: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness. METHODS: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life. RESULTS: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups. CONCLUSIONS: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions. TRIAL REGISTRATION: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200 .

Improving mental health pathways and care for adolescents in transition to adult services (IMPACT): a retrospective case note review of social and clinical determinants of transition.

BACKGROUND: Poor transitions to adult care from child and adolescent mental health services may increase the risk of disengagement and long-term negative outcomes. However, studies of transitions in mental health care are commonly difficult to administer and little is known about the determinants of successful transition. The persistence of health inequalities related to access, care, and outcome is now well accepted including the inverse care law which suggests that those most in need of services may be the least likely to obtain them. We sought to examine the pathways and determinants of transition, including the role of social class. METHOD: A retrospective systematic examination of electronic records and case notes of young people eligible to transition to adult care over a 4-year period across five Health and Social Care NHS Trusts in Northern Ireland. RESULTS: We identified 373 service users eligible for transition. While a high proportion of eligible patients made the transition to adult services, very few received an optimal transition process and many dropped out of services or subsequently disengaged. Clinical factors, rather than social class, appear to be more influential in the transition pathway. However, those not in employment, education or training (NEET) were more likely (OR 3.04: 95% CI 1.34, 6.91) to have been referred to Adult Mental Health Services (AMHS), as were those with a risk assessment or diagnosis (OR 4.89: 2.45, 9.80 and OR 3.36: 1.78, 6.34), respectively. CONCLUSIONS: Despite the importance of a smoother transition to adult services, surprisingly, few patients experience this. There is a need for stronger standardised policies and guidelines to ensure optimal transitional care to AMHS. The barriers between different arms of psychiatry appear to persist. Joint working and shared arrangements between child and adolescent and adult mental health services should be fostered.