Assessing the Delivery of Coordinated Care to Patients with Advanced Chronic Kidney Disease in Ontario, Canada: A Survey of Patients and Healthcare Professionals.

INTRODUCTION: Patients with advanced Chronic Kidney Disease (CKD) have complex health needs, and thus require care that is coordinated across professionals and organizations. This study aimed to describe the extent of coordinated care delivery for patients with advanced CKD from the perspectives of both patients and healthcare professionals. METHODS: The Coordination Scale of the Patient Assessment of Chronic Illness Care (PACIC-26) survey was administered to a random sample of 14,257 patients on maintenance dialysis or receiving care in end-stage kidney disease preparation clinics in Ontario, Canada. A five-item survey was administered to 596 multidisciplinary nephrology professionals. RESULTS: Among the 1,925 patient respondents, 67% reported they had been referred to an allied health professional; 19% had been encouraged to attend programs in the community; and 34% had been told how their visits with other types of doctors helped their treatment (% reporting "always" or "most of the time"). Patient responses were significantly different by treatment modality/setting, but not by gender or geographic location of treatment facility. Among the 276 professional respondents, 37% reported their patients' care was well-coordinated across settings; 56% reported participating in interdisciplinary care planning discussions; and 53% reported they are aware of appropriate home and community services to support their patients (% reporting "always" or "most of the time"). CONCLUSION: The results suggest that care for patients with advanced CKD in Ontario is not consistently coordinated. Healthcare professionals may enhance patient perceptions of coordinated care through explicit communication with patients about how the professionals they see and treatments or services they receive influence their overall health and well-being. At a systems level, there is a need to improve professional awareness of and linkages to home- and community-based services.

Patient and Staff Engagement in Health System Improvement: A Qualitative Evaluation of the Experience-Based Co-design Approach in Canada.

Surveys and interviews were undertaken in Ontario, Canada, with healthcare staff, patients, caregivers and family members to evaluate the adoption and effectiveness of the experience-based co-design (EBCD) approach. EBCD combines patient and staff experiences to identify opportunities for healthcare improvement. Participants reported that EBCD was an effective form of improving experience. Implementation barriers included time, human resources and funding. Suggestions for increased EBCD utilization included funding, training, promotion of success stories, leadership and greater participant involvement. EBCD can be an effective method of identifying and transforming how healthcare services are delivered to improve the patient, caregiver and family experience.

Hippocampal Functioning and Verbal Associative Memory in Adolescents with Congenital Hypothyroidism.

Thyroid hormone (TH) is essential for normal development of the hippocampus, which is critical for memory and particularly for learning and recalling associations between visual and verbal stimuli. Adolescents with congenital hypothyroidism (CH), who lack TH in late gestation and early life, demonstrate weak verbal recall abilities, reduced hippocampal volumes, and abnormal hippocampal functioning for visually associated material. However, it is not known if their hippocampus functions abnormally when remembering verbal associations. Our objective was to assess hippocampal functioning in CH using functional magnetic resonance imaging (fMRI). Fourteen adolescents with CH and 14 typically developing controls (TDC) were studied. Participants studied pairs of words and then, during fMRI acquisition, made two types of recognition decisions: in one they judged whether the pairs were the same as when seen originally and in the other, whether individual words were seen before regardless of pairing. Hippocampal activation was greater for pairs than items in both groups, but this difference was only significant in TDC. When we directly compared the groups, the right anterior hippocampus was the primary region in which the TDC and CH groups differed for this pair memory effect. Results signify that adolescents with CH show abnormal hippocampal functioning during verbal memory processing.

Facial memory deficits in children with fetal alcohol spectrum disorders.

Prenatal exposure to alcohol may lead to a range of neurobehavioral effects, including impaired learning and memory. Although children with fetal alcohol spectrum disorders (FASD) exhibit both verbal and nonverbal memory impairments, their memory for faces has not been as thoroughly investigated and the extent literature provides inconsistent results. The aim of the current study was to determine whether difficulties in face memory exist in children with FASD and whether the difficulties are mediated by task demands. To address this, we used two measures of immediate and delayed facial recognition memory, the Children's Memory Scale (CMS) and Test of Memory and Learning (TOMAL). Compared to typically developing controls, children with FASD showed memory deficits on all tests and were more likely to perform in a clinically significant range. As well, children performed more poorly on the CMS compared to TOMAL, a finding consistent with the greater difficulty of the CMS task. Our results are consistent with our hypothesis that children with FASD show impairment in facial memory, particularly on demanding memory tasks.

Visuospatial associative memory and hippocampal functioning in congenital hypothyroidism.

Congenital hypothyroidism is a pediatric endocrine disorder caused by insufficient endogenous thyroid hormone production. Children with congenital hypothyroidism have difficulties with episodic memory and abnormalities in hippocampal structure, suggesting deficient hippocampal functioning. To assess hippocampal activation in adolescents with congenital hypothyroidism (N = 14; age range, 11.5-14.7 years) compared with controls (N = 15; age range, 11.2-15.5 years), a functional magnetic resonance imaging visuospatial memory task was used. In this task, participants had to decide if object pairings were novel or were previously studied or if object pairs were in the same location as they were at study or had switched locations. Despite no group differences in task performance, adolescents with congenital hypothyroidism showed both increased magnitude of hippocampal activation relative to controls and bilateral hippocampal activation when only the left was observed in controls. Furthermore, the increased activation in the congenital hypothyroidism group was correlated with the severity of the hypothyroidism experienced early in life. These results suggest that perinatal deprivation of thyroid hormone has longstanding effects on hippocampal function and may account for memory problems experienced by adolescents with congenital hypothyroidism.

Hippocampal size and memory functioning in children and adolescents with congenital hypothyroidism.

BACKGROUND: Despite early diagnosis and treatment of congenital hypothyroidism (CH) after newborn screening, selective and persistent neurocognitive weaknesses may be seen. One area of particular weakness is memory, especially on tasks known to be mediated by the hippocampus. However, the hippocampus has not been directly studied in this population. OBJECTIVE: Our objective was to use magnetic resonance imaging to determine whether children and adolescents with CH have reduced hippocampal size and abnormal hippocampal growth patterns relative to peers and whether reduced hippocampal volumes in CH predict poor memory performance. METHODS: Studied were 35 CH and 44 typically developing controls aged 9-15 yr. All were assessed using standardized tests of intelligence and verbal and visual memory and received an magnetic resonance imaging scan. Parents completed a questionnaire of their everyday memory functioning (EMF). Right and left hippocampal volumes were measured by manual tracing. RESULTS: CH subjects scored significantly below controls on indices of verbal but not visual memory as well as aspects of EMF. CH subjects also had smaller hippocampal volumes, particularly on the left side. Unlike controls, who showed a positive relationship between age and hippocampal volumes, age was unrelated to hippocampal size in CH. Structure-function correlations revealed significant relationships between hippocampal volumes and EMF in controls and modest correlations between hippocampal volumes and memory test scores but not EMF in CH. CONCLUSIONS: Compromised hippocampal development in CH may contribute to some of the memory weaknesses observed in this population.