Anxiety Impacts Consent Capacity to Treatment in Alzheimer's Disease

This study aimed to clarify how behavioral and psychological symptoms of dementia (BPSD) and cognitive function affect the decision-making capacity of persons with Alzheimer's disease (AD) in a real informed consent situation about anti-dementia drug prescriptions. The participants were 76 patients with AD. We used the MacArthur Competence Assessment Tool to assess the capacity for consent to treatment (MacCAT-T). We simultaneously used the Mini-Mental State Examination, Executive Interview, Executive Clock Drawing Task, Logical Memory I of the Wechsler Memory Scale-Revised (LM I), LM II, and Neuropsychiatric Inventory (NPI) to assess cognitive function and psychiatric symptoms. We calculated the correlations between the MacCAT-T scores and the demographic, neuropsychological, and psychiatric variables. Once the univariable correlations were determined, we performed simple linear regression analyses to examine if the regression equations were significant. In the final analyses, we incorporated significant variables into stepwise multiple linear regression analyses to determine the most significant predictors of mental capacity. Age (β = −0.34), anxiety (β = −0.27), and LM I (β = 0.26) were significant predictors of “understanding” (adjusted R2 = 0.29). LM II (β = 0.39), anxiety (β = −0.29), and education (β = 0.21) were significant predictors of “understanding of alternative treatments” (adjusted R2 = 0.30). Anxiety (β = −0.36) and age (β = −0.22) were significant predictors of “appreciation” (adjusted R2 = 0.18). Age (β = −0.31) and anxiety (β = −0.28) were significant predictors of explained variance in “reasoning” (adjusted R2 = 0.17). Patients with anxiety had lower scores on all five MacCAT-T subscales: “understanding,” without 3.8 [SD = 1.2] vs. with 2.6 [SD = 1.1]; “understanding of alternative treatments,” without 2.9 [SD = 2.2] vs. with 1.3 [SD = 1.8]; “appreciation,” without 2.9 [SD = 1.1] vs. with 1.9 [SD = 1.2]; “reasoning,” without 4.0 [SD = 2.0] vs. with 2.7 [SD = 1.7]; and “expressing a choice,” without 1.9 [SD = 0.4] vs. with 1.5 [SD = 0.6]. Considering the effects of BPSD, cognitive function, and age/education when assessing consent capacity in persons with AD is important. Reducing anxiety may contribute to improved capacity in persons with AD.

Randomised feasibility trial of the helping families programme-modified: an intensive parenting intervention for parents affected by severe personality difficulties

BackgroundSpecialist parenting intervention could improve coexistent parenting and child mental health difficulties of parents affected by severe personality difficulties.ObjectiveConduct a feasibility trial of Helping Families Programme-Modified (HFP-M), a specialist parenting intervention.DesignPragmatic, mixed-methods trial, 1:1 random allocation, assessing feasibility, intervention acceptability and outcome estimates.SettingsTwo National Health Service health trusts and local authority children’s social care.ParticipantsParents: (i) primary caregiver, (ii) 18 to 65 years, (iii) severe personality difficulties, (iv) proficient English and (v) capacity for consent. Child: (i) 3 to 11 years, (ii) living with index parent and (iii) significant emotional/behavioural difficulties.InterventionHFP-M: 16-session home-based intervention using parenting and therapeutic engagement strategies. Usual care: standard care augmented by single psychoeducational parenting session.OutcomesPrimary feasibility outcome: participant retention rate. Secondary outcomes: (i) rates of recruitment, eligibility and data completion, and (ii) rates of intervention acceptance, completion and alliance (Working Alliance Inventory-Short Revised). Primary clinical outcome: child behaviour (Eyberg Child Behaviour Inventory). Secondary outcomes: child mental health (Concerns About My Child, Child Behaviour Checklist-Internalising Scale), parenting (Arnold-O’Leary Parenting Scale, Kansas Parental Satisfaction Scale) and parent mental health (Symptom-Checklist-27). Quantitative data were collected blind to allocation.ResultsFindings broadly supported non-diagnostic selection criterion. Of 48 participants recruited, 32 completed post-intervention measures at mean 42 weeks later. Participant retention exceeded a priori rate (HFP-M=18; Usual care=14; 66.7%, 95% CI 51.6% to 79.6%). HFP-M was acceptable, with delivery longer than planned. Usual care had lower alliance rating. Child and parenting outcome effects detected across trial arms with potential HFP-M advantage (effect size range: 0.0 to 1.3).ConclusionHFP-M is an acceptable and potentially effective specialist parenting intervention. A definitive trial is feasible, subject to consideration of recruitment and retention methods, intervention efficiency and comparator condition. Caution is required in interpretation of results due to reduced sample size. No serious adverse events reported.Trial registration numberISRCTN14573230

Ethical Issues in Vascular Neurology

There are ethical aspects to each of the three phases of cerebrovascular disease: hyperacute management, acute prognostication and management of early complications, and long-term recovery and reintegration with the community. This article addresses ethical concerns pertinent to each phase. First, we discuss ethical issues regarding consent for thrombolysis and endovascular treatment for acute ischemic stroke, including a review of considerations regarding the provision of acute stroke treatment advice over the telephone. Next, we discuss capacity for consent and prognostication after ischemic stroke and intracranial hemorrhage, with a focus on the problems of the self-fulfilling prophecy. Finally, we discuss residual disability and patients' return to driving. Consideration of these ethical dimensions of cerebrovascular disease will assist neurologists in caring for patients and families suffering from this complex condition.

Abstract 99: Prep2: A Refined Algorithm for Predicting REcovery Potential of Upper Limb Function After Stroke

Independence after stroke depends on the recovery of motor function, but this is difficult to accurately predict for individual patients. We have previously described an algorithm for predicting potential for recovery of upper limb function for individual patients after stroke. The Predict REcovery Potential (PREP) algorithm begins with a bedside assessment of paretic shoulder abduction and finger extension strength (SAFE score out of 10), followed by transcranial magnetic stimulation (TMS), and magnetic resonance imaging (MRI), as required. Patients are predicted to have potential for an Excellent, Good, Limited or Poor recovery of upper limb function within 12 weeks. The algorithm was developed with data from 40 patients with first-ever ischaemic stroke. This study evaluated and refined the algorithm with a larger, more heterogeneous cohort. Inclusion criteria were confirmed stroke (ischaemic or haemorrhagic), new upper limb motor symptoms, and age at least 18 years. Previous stroke, thrombolysis and thrombectomy were allowed. Exclusion criteria were cerebellar stroke, contraindications to TMS and MRI for those patients who required these tests, and reduced capacity for consent. The Action Research Arm Test was used to measure paretic upper limb function 12 weeks post-stroke. A sample of 192 patients was recruited within 3 days of stroke (106 men, mean age 72 y, 100 right hemisphere), and 157 patients completed the 12 week assessment. The algorithm was refined by combining the SAFE score with age (<80, ≥80 years) to more accurately distinguish between patients with an Excellent or Good prognosis; and by revising the MRI asymmetry index threshold from 0.15 to 0.125 to more accurately distinguish between patients with a Limited or Poor prognosis. These revisions improved accuracy from 59% to 75%. With the revised algorithm, the proportion of patients who need TMS is reduced from over half to around one third. The revised algorithm is therefore more accurate and more efficient. Alternative versions of the PREP2 algorithm will also be presented, which can be used when TMS and/or MRI are unavailable. The potential clinical and economic benefits of implementing the PREP2 algorithm will be discussed.

Informed consent in a vulnerable population group: supporting individuals aging with intellectual disability to participate in developing their own health and support programs

Objective The aim of the present study was to explore the use of complementary consent methodologies to support a potentially vulnerable group of people, namely those aging with intellectual disability, to provide personal input. It was premised on the view that processes to determine capacity for consent, appropriately modified to account for individual capabilities and current circumstances, could facilitate meaningful participation in the development of personal health care plans of people previously excluded from contributing. Methods The present descriptive case study research was undertaken in New South Wales, Australia. A seven-step process for determining capacity for consent was developed, and 10 participants aged between 54 and 73 years with lifelong intellectual disability and health comorbidities were involved. A variety of assistive communication tools was used to support individuals to demonstrate their capacity for giving informed consent. Results After being provided with tailored support mechanisms, seven participants were considered to meet all seven components for determining capacity for consent. Three participants were deemed not to have capacity to give consent regardless of the type of support provided. Conclusions Three critical factors for facilitating personal involvement in decision making for individuals with an intellectual disability were identified: (1) defining consent specifically for the target outcome; (2) outlining the criteria needed for consent to be obtained; and (3) using appropriately modified alternative communication mechanisms as necessary. What is known about the topic? Self-determination is one of the fundamental principles of human rights legislation around the world and, as such, it is considered desirable to have personal input by individuals into the development of their own health care plans. However, this is not always considered feasible if the person comes from a group in the community perceived to be vulnerable to exploitation and viewed as lacking capacity to give informed consent. This results in the use of proxy respondents, who may not accurately represent the desires and life aspirations of the individual. What does this paper add? This paper examines the development and implementation of a targeted program to support individuals aging with lifelong intellectual disability to demonstrate their capacity to provide informed consent. Specifically, it outlines how alternative communications methods, tailored to personal needs and capacity, can assist an individual to both understand and then confirm their understanding of consent in order to participate in developing health care plans. What are the implications for practitioners? People with intellectual disability are now living longer and are increasingly at risk of serious health conditions. The development of long-term health management plans has traditionally not included individuals with more complex needs and moderate intellectual disability, but the present study shows that members of this cohort can successfully understand and consent to participate in health care decision making. By proactively supporting this process, community and healthcare settings may be able to directly facilitate contribution from more individuals, therefore better meeting the goal of person-centred support.