Working towards integration: Advancing Care Coordination & TeleHealth Deployment (ACT) Programme

This poster gives a summary of the ACT Programme, the sites participating, diseases covered, numbers of patients, project timetable and the aim to provide a ‘toolbox’ of best practice. ACT programmes fall within five broad areas: CC of Management of Chronic and Multimorbid long-term conditions; Management of Chronic and Multimorbid long-term conditions with telehealth; Active patient/prevention/Education; Elderly at home; and Transitional care/post discharge. The number of patients recruited to ACT programmes varied considerably, from the small scale (e.g. Scotland’s REACT project for those over 75 and Groningen’s eDiabetes programme, both with 15-20 patients) to much larger scale (e.g. Lombardy’s Chronic patients with 37,000). Most Programmes (14 out of 17) recruit people with chronic conditions and in some cases these are specified such as Congestive Heart Failure and Diabetes. Patients in recovery or rehabilitation were the second most cited group (12 out of 17). Patients in the preventative category were least likely to enter Programmes (5 out of 17). Some Programmes accept patients at multiple key stages. For example, Groningen’s Effective Cardio Programme accepts patients at the preventative, newly diagnosed, disease management, recovery/rehabilitation, at risk, chronic and palliative stages, in addition to those on new medication. All Programmes reported clear lines of responsibility for the provision of patient care. General Practitioners/Primary Care took responsibility in nine of the 17 Programmes. Elsewhere, specialist nurses held responsibility (e.g. Groningen’s Effective Cardio) or chest physicians (e.g. Groningen’s asthma/COPD Telehealth service). Other Programmes apportioned responsibility at a broader level via a Programme Management Working Group and local managers (Basque Country’s Active Patients) for example, or with a National diabetes standard and regional guidelines (Groningen’s eDiabetes) or with defined care pathways (Scotland’s three Programmes). Further details of the Organisational aspects of the participants in the ACT programme will be presented in the Poste

Investigating the behavioural effects of a mobile-phone based home telehealth intervention in people with insulin-requiring diabetes: Results of a randomized controlled trial with patient interviews

INTRODUCTION: Evidence supporting home telehealth effects on clinical outcomes in diabetes is available, yet mechanisms of action for these improvements remain poorly understood. Behavioural change is one plausible explanation. This study investigated the behavioural effects of a mobile-phone based home telehealth (MTH) intervention in people with diabetes. It was hypothesized that MTH would improve self-efficacy, illness beliefs, and diabetes self-care. METHODS: A randomized controlled trial compared standard care to standard care supplemented with MTH (self-monitoring, data transmission, graphical and nurse-initiated feedback, educational calls). Self-report measures of self-efficacy, illness beliefs, and self-care were repeated at baseline, three months, and nine months. MTH effects were based on the group by time interactions in hierarchical linear models and effect sizes with 95% confidence intervals (CIs). Interviews with MTH participants explored the perceived effects of MTH on diabetes self-management. RESULTS: Eighty-one participants were randomized to the intervention (n = 45) and standard care (n = 36). Significant group by time effects were observed for five out of seven self-efficacy subscales. Effect sizes were large, particularly at nine months. Interaction effects for illness beliefs and self-care were non-significant, but effect sizes and confidence intervals suggested MTH may positively affect diet and exercise. In interviews, MTH was associated with increased awareness, motivation, and a greater sense of security. Improved self-monitoring and diet were reported by some participants. DISCUSSION: MTH empowers people with diabetes to manage their condition and may influence self-care. Future MTH research would benefit from investigating behavioural mechanisms and determining patient profiles predictive of greater behavioural effectiveness

What do coronary artery disease patients think about their treatments? An assessment of patients' treatment representations

This article investigates patients' beliefs about the intervention offered to manage their illness. Coronary artery disease (CAD) patients, 70 of whom were undergoing medication, 71 to undergo angioplasty and 73 to undergo surgery, completed a 58-item questionnaire regarding their treatment beliefs. Responses were subject to principal components analysis, which indicated four factors accounting for 36.7 per cent of the variance. After excluding extraneous items, the final questionnaire consisted of 27 items, clustered around four components: treatment-value, treatment-concerns, decision-satisfaction and cure. A coherent set of subscale inter-correlations and ANCOVAs examining treatment group differences on these sub-scales showed a logical, explicable pattern of group differences reflecting the distinctive natures of each treatment and demonstrated discriminant validity. Correlations with other scales provided evidence of construct validity

The Effects of a Web-Based Tool for Parents of Children With Juvenile Idiopathic Arthritis: Randomized Controlled Trial

Background: Juvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases that cause pain and disability if not controlled by treatment. Parenting a child with JIA is stressful for parents, who express concerns about their child’s treatment and may experience anxiety and powerlessness concerning their child’s illness. Parenting stress is greater in parents of children with chronic illness than in those with healthy children and is related to poorer psychological adjustment in both parents and children. It is therefore important to develop interventions to support parents. This paper reports the evaluation of a web-based tool that provides information and practical skills to help increase parents’ confidence in managing their child’s illness and reduce parenting stress. Objective: The aim of this study is to evaluate the benefits of a web-based tool (WebParC) for parents of children with recently diagnosed JIA. Methods: A multicentered randomized controlled trial was conducted at pediatric rheumatology centers in England. We recruited parents of children aged ≤12 years who had been diagnosed with JIA within the previous 6 months. They were randomized to the intervention (WebParC access plus standard care) or the control (standard care alone) and followed up 4 months and 12 months after randomization. Where both parents participated, they were randomized by household to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive behavioral therapy, to help parents develop skills to manage JIA-related issues. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress. The secondary outcomes were parental mood, self-efficacy, coping, effectiveness of participation in their child’s health care, satisfaction with health care, and child’s health-related quality of life. Results: A total of 203 households comprising 220 parents were randomized to the intervention (100/203, 49.3%) or control (103/203, 50.7%) arm. Follow-up assessments were completed by 65.5% (133/203) of the households at 4 months (intervention 60/100, 60%, and control 73/103, 70.9%) and 61.1% (124/203) of the households at 12 months (intervention 58/100, 58%, and control 66/103, 64.1%). A main effect of the trial arm was found on the Pediatric Inventory for Parents: the intervention participants reported less frequency (subscales communication F1,120627=5.37; P=.02, and role function F1,27203=5.40; P=.02) and difficulty (subscales communication F1,2237=7.43; P=.006, medical care F1,2907=4.04; P=.04, and role function F1,821=4.37, P=.04) regarding illness-related stressful events than the control participants. Conclusions: The WebParC website for parents of children with JIA reduced illness-related parenting stress. This web-based intervention offers a feasible preventive approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 13159730; http://www.isrctn.com/ISRCTN1315973

Prospective Changes in Health-Related Quality of Life and Emotional Outcomes in Kidney Transplantation over 6 Years

Little is known on long-term outcomes in kidney transplantation. This study evaluated changes and predictors of generic and transplantation-specific health-related quality of life (HQoL) over six years in N = 102 kidney transplant survivors using the Short-form Health Survey-36 and the Transplant Effects questionnaire. Mixed models analysis was used to determine long-term outcomes. Emotional HQoL improved over time: Mental Component score, Mental Health, Energy (Ps = .000). Physical HQoL deteriorated: Physical Component Score (P = .001), Pain (P = .002). LRD transplant recipients had greater decline in physical functioning (P = .003) and PCS (P = .000) compared to cadaver recipients. Worry about the transplant (P = .036) and feelings of responsibility (P = .008) increased significantly over time. Worry about the transplant and perceived ability to work predicted 12.7% and 31.1% in variance in MCS and PCS, respectively. Efforts should be made to maintain HQoL and emotional outcomes with ongoing monitoring and support programs throughout the course of posttransplant care

HINTS Outperforms ABCD 2 to Screen for Stroke in Acute Continuous Vertigo and Dizziness

Objectives Dizziness and vertigo account for about 4 million emergency department ( ED ) visits annually in the United States, and some 160,000 to 240,000 (4% to 6%) have cerebrovascular causes. Stroke diagnosis in ED patients with vertigo/dizziness is challenging because the majority have no obvious focal neurologic signs at initial presentation. The authors sought to compare the accuracy of two previously published approaches purported to be useful in bedside screening for possible stroke in dizziness: a clinical decision rule (head impulse, nystagmus type, test of skew [ HINTS ]) and a risk stratification rule (age, blood pressure, clinical features, duration of symptoms, diabetes [ ABCD 2]). Methods This was a cross‐sectional study of high‐risk patients (more than one stroke risk factor) with acute vestibular syndrome ( AVS ; acute, persistent vertigo or dizziness with nystagmus, plus nausea or vomiting, head motion intolerance, and new gait unsteadiness) at a single academic center. All underwent neurootologic examination, neuroimaging (97.4% by magnetic resonance imaging [ MRI ]), and follow‐up. ABCD 2 risk scores (0–7 points), using the recommended cutoff of ≥4 for stroke, were compared to a three‐component eye movement battery ( HINTS ). Sensitivity, specificity, and positive and negative likelihood ratios ( LR +, LR –) were assessed for stroke and other central causes, and the results were stratified by age. False‐negative initial neuroimaging was also assessed. Results A total of 190 adult AVS patients were assessed (1999–2012). Median age was 60.5 years (range = 18 to 92 years; interquartile range [ IQR ] = 52.0 to 70.0 years); 60.5% were men. Final diagnoses were vestibular neuritis (34.7%), posterior fossa stroke (59.5% [105 infarctions, eight hemorrhages]), and other central causes (5.8%). Median ABCD 2 was 4.0 (range = 2 to 7; IQR  = 3.0 to 4.0). ABCD 2 ≥ 4 for stroke had sensitivity of 61.1%, specificity of 62.3%, LR + of 1.62, and LR – of 0.62; sensitivity was lower for those younger than 60 years old (28.9%). HINTS stroke sensitivity was 96.5%, specificity was 84.4%, LR + was 6.19, and LR – was 0.04 and did not vary by age. For any central lesion, sensitivity was 96.8%, specificity was 98.5%, LR + was 63.9, and LR – was 0.03 for HINTS , and sensitivity was 99.2%, specificity was 97.0%, LR + was 32.7, and LR – was 0.01 for HINTS “plus” (any new hearing loss added to HINTS ). Initial MRI s were falsely negative in 15 of 105 (14.3%) infarctions; all but one was obtained before 48 hours after onset, and all were confirmed by delayed MRI . Conclusions HINTS substantially outperforms ABCD 2 for stroke diagnosis in ED patients with AVS . It also outperforms MRI obtained within the first 2 days after symptom onset. While HINTS testing has traditionally been performed by specialists, methods for empowering emergency physicians ( EP s) to leverage this approach for stroke screening in dizziness should be investigated. Resumen Objetivos El mareo y el vértigo contabilizan aproximadamente 4 millones de visitas anuales a los servicios de urgencias ( SU ) en Estados Unidos, y de 160.000 a 240.000 (4% al 6%) tienen un origen cerebrovascular. El diagnóstico de ictus en los pacientes con vértigo o mareo es complejo debido a que la mayoría no tienen signos de focalidad neurológica evidentes en la atención inicial. Los autores comparan la certeza de dos aproximaciones previamente publicadas que resultaron ser de utilidad en el cribaje a pie de cama del posible ictus en el mareo: una regla de decisión clínica [ HINTS : Head Impulse (impulso de la cabeza), Nystagmus (nistagmo), Test of Skew (test de la desviación)], y una regla de estratificación del riesgo [ ABCD 2: Age (edad), Blood pressure (presión arterial), Clinical features (hallazgos clínicos), Duration of symptoms (duración de los síntomas), Diabetes (diabetes)]. Metodología Estudio transversal de pacientes de alto riesgo (más de un factor de riesgo de ictus) con síndrome vestibular agudo ( SVA ) (mareo o vértigo agudo persistente con nistagmo, más náuseas o vómitos; intolerancia a la movilización de la cabeza; e inestabilidad de la marcha aparecidos de novo ) realizado en un único centro universitario. Se llevó a cabo en todos los pacientes una exploración neurootológica, de neuroimagen (97,4% mediante resonancia magnética [ RM ]) y de seguimiento. Las puntuaciones de riesgo ABCD 2 (0–7 puntos), usando el punto de corte recomendado ≥ 4 para ictus, se compararon con una batería de movimiento ocular de tres componentes ( HINTS ). Se evaluaron la sensibilidad, la especificidad y las razones de probabilidad positiva y negativa ( RPP y RPN ) para ictus y otras causas centrales, y los resultados se estratificaron por edad. También se evaluaron los falsos negativos iniciales de la neuroimagen (RM). Resultados Se evaluaron 190 pacientes adultos con SVA (1999–2012). La mediana de edad fue de 60,5 años (rango 18 a 92 años; RIC 52,0 a 70,0 años); un 60,5% fueron hombres. Los diagnósticos finales fueron neuritis vestibular (34,7%), ictus de fosa posterior (59,5% [105 infartos, 8 hemorragias]) y otras causas centrales (5,8%). La mediana de ABCD 2 fue 4,0 (rango 2 a 7; RIC 3,0 a 4,0). ABCD 2 ≥4 para ictus tuvo una sensibilidad de un 61,1%, una especificidad de un 62,3%, una RPP de 1,62, y una RPN de 0,62; la sensibilidad fue menor para aquéllos que eran más jóvenes de 60 años (28,9%). La sensibilidad para el ictus del HINTS fue de un 96,5%, la especificidad de un 84,4%, la RPP de 6,19 y la RPN de 0,04, y no se modificó por la edad. Para cualquier lesión central, la sensibilidad fue de un 96,8%, la especificidad de un 98,5%, la RPP de 63,9 y la RPN de 0,03 para el HINTS ; y la sensibilidad de un 99,2%, la especificidad de un 97,0%, la RPP de 32,7 y la RPN de 0,01 para HINTS + (cualquier nueva pérdida de audición añadida al HINTS ). Las RM iniciales fueron falsamente negativas en 15 de 105 (14,3%) infartos, todas salvo una fueron hechas antes de las 48 horas del inicio de la clínica, y todos fueron confirmados por una RM diferida. Conclusiones El HINTS mejora sustancialmente el ABCD 2 para el diagnóstico de ictus en los pacientes con SVA en el SU . También supera a la RM obtenida en los primeros dos días tras el inicio de los síntomas. Dado que el test de HINTS se ha realizado tradicionalmente por especialistas, se deberían investigar métodos que permitan a los urgenciólogos hacer uso de esta aproximación para el cribado de ictus en el mareo.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/100264/1/acem12223.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/100264/2/acem12223-sup-0001-DataSupplementS1.pd

Psychosocial Risk Factors for Health-Related Quality of Life in Adult Congenital Heart Disease

Background: There is variability in the impact of adult congenital heart disease (ACHD) on health-related quality of life (HRQoL). A greater insight into the impact of ACHD may be gained from investigating HRQoL in various diagnostic groups and considering the importance of psychosocial risk factors for poor HRQoL. / Objective: We compared the HRQoL of people with ACHD with normative data from the general population and among 4 diagnostic groups and identified risk factors for poor HRQoL in ACHD from a comprehensive set of sociodemographic, clinical, and psychosocial factors. / Methods: We conducted a cross-sectional study with 303 participants from 4 diagnostic groups Simple, Tetralogy of Fallot, Transposition of the Great Arteries, Single Ventricle who completed measures of illness perceptions, coping, social support, mood, and generic and disease-specific HRQoL. Data were analyzed using 1-sample t tests, analysis of variance, and hierarchical multiple regressions. / Results: There was diminished psychosocial HRQoL in the Simple group compared with the general population. Consistently significant risk factors for poor HRQoL included younger age, a perception of more severe symptoms due to ACHD, depression, and anxiety. Clinical factors were poor predictors of HRQoL. / Conclusions: The findings highlight the need to develop intervention studies aiming to improve HRQoL in people with ACHD and the routine assessment of illness perceptions and mood problems during key periods in people's lives. This will help address patient misconceptions that could be tackled by clinicians or specialist nurses during routine outpatient appointments and identify people in need of psychological support

XThe psychosocial impact of living with an ocular prosthesis

Objective: Many patients are satisfied with their ocular prosthesis, but some describe problems with social interactions, body image and self-esteem. Although both clinical practice and research suggest that the severity of a disfiguring condition does not predict distress, there has been little research with patients living with an ocular prosthesis. The objective was to explore the psychological impact of living with an artificial eye or cosmetic shell and determine the relationship between psychological well-being and clinical and psychosocial factors. Methods: A cross-sectional study between March and September 2008 at the ocular prosthesis clinic of Moorfields Eye Hospital, UK. The primary outcome measures were mood as measured by the Hospital Anxiety and Depression Scale (HADS) and appearance-related social anxiety and social avoidance, as measured by the Derriford Appearance Scale (DAS24). Results: Mean scores on the HADS and DAS24 were within normal range, but a considerable proportion of participants were experiencing significant levels of distress. Psychosocial adjustment was unrelated to most clinical and demographic variables, but was associated with a series of cognitive processes. Conclusions: Psychological variables, rather than clinical or demographic factors, are associated with how a patient adjusts to wearing an ocular prosthesis. Such factors might be amenable to change through psychosocial intervention