Creating Technology-enhanced Practice: A University-Home Care-Corporate Alliance

Insuring full benefit of consumer health informatics innovations requires integrating the technology into nursing practice, yet many valuable innovations are developed in research projects and never reach full integration. To avoid this outcome, a team of researchers partnered with a home care agency’s staff and patients and their corporate parent’s Information Systems and Research group to create a Technology-Enhanced Practice (TEP) designed to enhance care of home bound patients and their family care givers. The technology core of TEP, the HeartCare2 web site, was built in a collaborative process and deployed within the existing patient portal of the clinical partner. This paper describes the innovation and the experience of bringing it into full operation

Impact of medical, health related, social and occupational factors on post-liver transplant recovery: a longitudinal study

poster abstractPurpose: Organ transplantation is a serious surgery with nearly 10% of patients failing to survive the first three months. Studies of quality of life reflect an increase post-transplant, as compared to pre-transplant, then reports vary including a trend towards decreasing QOL scores by the end of the first transplanted year. In this first year, patients have an increased risk of re-hospitalization due to infection, failure of the body to accept the graft, problems with anti-rejection medications or post- surgical complications. Methods: A longitudinal study of liver transplant recipients (n=23) followed medical, social, and occupational factors, along with SF-36 measures. Results: Variability in QOL scores at 1, 2, 3, 6, 9, and 12 months were directly related to identifiable factors. In those subjects where health returned in an uncomplicated manner, QOL scores consistently improved with the greatest change occurring over the first six months and then tapering off through the end of the first year. Conclusions: These subjects almost uniformly expressed frustration at the length of time it took to return to a healthy state. In circumstances where recovery was delayed due to medical reasons, QOL scores declined significantly until the problems were resolved. In several cases, QOL scores stayed low as these individuals were unprepared for the potential complications associated with this difficult surgery

Fatigue as Reported at 12 Time Points during the First Year Post-Liver Transplant

abstractBACKGROUND: Although liver transplantation has evolved as an effective procedure, fatigue remains a post-transplant complaint [1]. As yet, there are no published accounts of the experience of fatigue at temporal intervals during the first post-transplant year, and this information would benefit LT candidates in recovery planning. Van Ginneken [2] found that time since transplant was not associated with physical fatigue and reduced activity, but was associated with albumin levels less than 25g/l and with lower GFR. METHODS: Data used in this study were collected through an ongoing, longitudinal, prospective design. Results presented here are for fatigue and biometric data at 12 data points starting one week post hospital discharge, continued weekly for the first 8 weeks, then monthly at 3, 6, 9, and 12 months. RESULTS: We sampled 30 subjects: 19 (70.4%) male and 8 (29.6%) female, age 55.4 ± 9.8 years. A mixed models analysis of variance was done to investigate a change in FACIT over time. The initial model included age, MELD, sex, week, albumin, ALT, BILI T, and CREAT. The final model included age, BILI T, and week. Increasing age and BILI T were associated with greater fatigue (p=0.0376 and p=0.0005, respectively). There was significant decrease in fatigue over time (p<0.0001). Pair-wise comparisons were done to determine which weeks significantly differed. Tukey’s adjustment for multiple comparisons was used. Figure 1 indicates which visits significantly differed. DISCUSSION: Our subjects experienced decreased fatigue over time. The data set was rich with prospectively collected longitudinal information helpful for establishing realistic expectations for post-transplant fatigue. Finding include early weeks of recovery (weeks 2-3) differ from weeks 7+ and that there is no significant change after 3 months, up to one year. No association was seen with Albumin levels although total bilirubin and age were associated with greater fatigue

Pancreas Transplantation: Personal Factors Associated with Good and Poor Post-Transplant Adaptive Response

Notable differences in patient adaptation after pancreas transplant cause some to thrive and return to independent living, while others struggle with emotional and social problems. In order to prepare vulnerable individuals to better cope after transplant, we investigated pre-transplant factors associated with post-transplant adaptive capacity. The pancreas transplant team de ned; good adaptive response (GAR) in patients who were responsible, resourceful, and optimistic. Poor adaptive response (PAR) was associated with patients who tended to complain and were emotionally dependent. METHODS: Experts included 3 nurse coordinators and 3 social workers. A modified Delphi approach was used to achieve consensus on the de nition of GAR and PAR. 200 of the last transplanted pancreas recipients were selected if they: received a pancreas transplant for type 1 DM, with, or without a kidney, and survived a minimum of six months post-transplant. The experts classified cases into GAR and PAR, contextualized by confidence. We completed a chart abstraction of all 200 cases using pre-transplant data and the extracted variables were regressed on the 54 top weighted GAR cases and the top 40 weighted PAR cases. RESULTS: In the final model, past smoker, currently on disability, simultaneous pancreas and kidney (SPK), and less than high school education significantly predicted probability of having a PAR (p<0.05). The model was a well-fitting model with a Hosmer and Lemeshow goodness of t test of (p=0.8250 < 0.05). Given the lack of inclusion of any of the predicted social variables for PAR patients we looked at predictors of GAR. The goodness of fit test was a well-fitting model (p= 0.6294 < 0.05). In addition to pancreas after kidney (PAK) having an odds ratio of 10.39, past smoker was 10.99 and current disability was 5.8. Discussion: The association of PAK with GAR and SPK with PAR suggests a possible effect from prior experience with transplant aiding in coping afterwards. Our findings support the need for a prospective study of coping with pancreas transplant and points to more intensive pre-transplant preparation of recipients, particularly those with lesser education

Motor and non-motor improvements following short-term multidisciplinary day-clinic care in Parkinson's disease

Background: Inpatient as well as outpatient care does often not meet PD-patients' individual needs. Introduction: Day-clinic concepts encompassing a multidisciplinary team as well as therapy adjustments accompanying everyday demands aim at filling this gap. Methods: This is a retrospective study on short-term effects of a 3 week multidisciplinary rehabilitation program in patients with Parkinson's disease (PD) embedded in a specialized movement disorder day-clinic. We analyzed short-term outcome of motor and non-motor symptoms (NMS) in 143 PD-patients (mean age 65.3 +/- 11.9 years; Hoehn-and-Yahr-score 2.6 +/- 0.7) after 3 weeks with 7.4 +/- 1.8 active days of interdisciplinary day-care treatment. Participants attended the day-clinic in groups of five patients at a time. Improvements were evaluated by comparison of standardized physical therapy assessments, disease specific scores for motor symptoms (MDS-UPDRS III), mood (BDI), quality of life (PDQ39, SF36), sleep (PDSS, ESS), impulsiveness (QUIP), apathy (SAS), cognition (MMST), as well as change in medication before and directly after the intervention. Results: MDS-UPDRS motor score improved significantly by 22.9 +/- 21.5% (p < 0.001) and was accompanied by a significant reduction of imbalance, immobility, and weakness ranging between 6% and 17% in standardized physical therapy tests. In addition, all disease-specific non-motor scales improved significantly. Conclusions: A multidisciplinary day-clinic approach can support benefit on motor, non-motor symptoms and QoL in PD-patients. Given the increase in PD incidence and prevalence as well as the significant treatment effects shown here, more day-clinic treatment opportunities ought to be implemented to improve PD treatment adapted to everyday challenges while still reducing costs to the health care system

Long-term effects of pallidal deep brain stimulation in tardive dystonia: a follow-up of 5–14 years

Introduction: Pallidal DBS is an established treatment for severe isolated dystonia. However, its use in disabling and treatment-refractory tardive syndromes (TS) including tardive dyskinesia and tardive dystonia (TD) is less well investigated and long-term data remain sparse. This observational study evaluates long-term effects of deep brain stimulation (DBS) of the globus pallidus internus (GPi) in patients with medically refractory TS. Methods: We retrospectively analyzed a cohort of seven TD patients with bilateral GPi-DBS. Involuntary movements, dystonia and disability were rated at long-term follow-up (LT-FU) after a mean of 122 +/- 33.2 SD months (range 63-171 months) and compared to baseline (BL), short-term (ST-FU; mean 6 +/- 2.0 SD months) and 4-year follow-up (4y-FU; mean 45 +/- 12.3 SD months) using the Abnormal Involuntary Movement Scale (AIMS) and the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS), respectively. Quality of life and mood were evaluated using the SF36 and Beck Depression Index (BDI) questionnaires, respectively. Results: At LT-FU patients had improved by 73% +/- 14.2 SD in involuntary movements and 90% +/- 1.0 SD in dystonia. Mood had improved significantly whereas quality of life remained unchanged compared to baseline. No serious long-lasting stimulation-related adverse events (AEs) were observed. Three patients of this cohort presented without active stimulation and ongoing symptom relief at long-term follow-up after 3-10 years of continuous DBS. Conclusion: Pallidal DBS is a safe and effective long-term TD treatment. Even more interesting, three of our patients could stop stimulation after several years of DBS without serious relapse. Larger studies need to explore the phenomenon of ongoing symptom relief after DBS cessation

Long-term effects of bilateral pallidal deep brain stimulation in dystonia: a follow-up between 8 and 16 years

Objective: Observational study to evaluate the long-term motor and non-motor effects of deep brain stimulation (DBS) of the globus pallidus internus (GPi) on medically refractory dystonia. Background: Dystonia is a chronic disease affecting mainly young patients with a regular life expectancy and lifelong need for therapy. Pallidal DBS is an established treatment for severe isolated dystonia but long-term data are sparse. Methods: We considered 36 consecutive patients with isolated generalized (n = 14) and cervical/segmental (n = 22) dystonia operated at Charité-University Hospital between 2000 and 2007 in a retrospective analysis for long-term outcome of pallidal DBS. In 19 of these patients, we could analyze dystonic symptoms and disability rated by the Burke–Fahn–Marsden Dystonia Rating scale (BFMDRS) at baseline, short-term (ST-FU, range 3–36 months) and long-term follow-up (LT-FU, range 93–197 months). Quality of life and mood were evaluated using the SF36 and Beck Depression Index (BDI) questionnaires. Results: Patients reached an improvement in motor symptoms of 63.8 ± 5.7% (mean ± SE) at ST-FU and 67.9 ± 6.1% at LT-FU. Moreover, a significant and stable reduction in disability was shown following DBS (54.2 ± 9.4% at ST-FU and 53.8 ± 9.2% at LT-FU). BDI and SF36 had improved by 40% and 23%, respectively, at LT-FU (n = 14). Stimulation-induced adverse events included swallowing difficulties, dysarthria, and bradykinesia. Pulse generator (n = 3) and electrodes (n = 5) were revised in seven patients due to infection. Conclusions: Pallidal DBS is a safe and efficacious long-term treatment for dystonia with sustained effects on motor impairment and disability, accompanied by a robust improvement in mood and quality of life

Deep brain stimulation reduces (nocturnal) dyskinetic exacerbations in patients with ADCY5 mutation: a case series

Mutations in the ADCY5 gene can cause a complex hyperkinetic movement disorder. Episodic exacerbations of dyskinesia are a particularly disturbing symptom as they occur predominantly during night and interrupt sleep. We present the clinical short- and long-term effects of pallidal deep brain stimulation (DBS) in three patients with a confirmed pathogenic ADCY5 mutation. Patients were implanted with bilateral pallidal DBS at the age of 34, 20 and 13 years. Medical records were reviewed for clinical history. Pre- and postoperative video files were assessed using the “Abnormal Involuntary Movement Scale” (AIMS) as well as the motor part of the “Burke Fahn Marsden Dystonia Rating Scale” (BFMDRS). All patients reported subjective general improvement ranging from 40 to 60%, especially the reduction of nocturnal episodic dyskinesias (80–90%). Objective scales revealed only a mild decrease of involuntary movements in all and reduced dystonia in one patient. DBS-induced effects were sustained up to 13 years after implantation. We demonstrate that treatment with pallidal DBS was effective in reducing nocturnal dyskinetic exacerbations in patients with ADCY5-related movement disorder, which was sustained over the long term

Long‐term effects of pallidal and thalamic deep brain stimulation in myoclonus dystonia

Objective: Observational study to evaluate long-term effects of deep brain stimulation (DBS) of the globus pallidus internus (GPi) and the ventral intermediate thalamic nucleus (VIM) on patients with medically refractory myoclonus dystonia (MD). Background: More recently, pallidal as well as thalamic DBS have been applied successfully in MD but long-term data are sparse. Methods: We retrospectively analyzed a cohort of seven MD patients with either separate (n = 1, VIM) or combined GPi- DBS and VIM-DBS (n = 6). Myoclonus, dystonia and disability were rated at baseline (BL), short-term (ST-FU) and long-term follow-up (LT-FU) using the United Myoclonus Rating Scale, Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) and Tsui rating scale, respectively. Quality of life (QoL) and mood were evaluated using the SF-36 and Beck Depression Inventory questionnaires, respectively. Results: Patients reached a significant reduction of myoclonus at ST-FU (62% ± 7.3%; mean ± SE) and LT-FU (68% ± 3.4%). While overall motor BFMDRS changes were not significant at LT-FU, patients with GPi-DBS alone responded better and predominant cervical dystonia ameliorated significantly up to 54% ± 9.7% at long-term. Mean disability scores significantly improved by 44% ± 11.4% at ST-FU and 58% ± 14.8% at LT-FU. Mood and QoL remained unchanged between 5 and up to 20 years postoperatively. No serious long-lasting stimulation-related adverse events were observed. Conclusions: We present a cohort of MD patients with very long follow-up of pallidal and/or thalamic DBS that supports the GPi as the favourable stimulation target in MD with safe and sustaining effects on motor symptoms (myoclonus>dystonia) and disability