Epilepsy Transition in Ambulatory Care: Experiences and Benefits of an Epilepsy Transition Team

2020 ◽  
Vol 09 (04) ◽  
pp. 143-149
Author(s):  
Amisha Patel ◽  
Sophia Jan ◽  
Caren Steinway ◽  
Alexandra Bullock ◽  
Adam Greenberg ◽  
...  
Keyword(s):  
Clinical Care ◽  
Transition Process ◽  
Children And Youth ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Practical Program ◽  
Ongoing Assessment ◽  
Transition Policy

AbstractEpilepsy is the fourth most common neurological disorder and affects people of all ages; however, at least 40% of children will continue to have seizures into adulthood. Children and youth with epilepsy (CYE) experience neurologic and extraneurologic changes that can negatively impact self-management skills necessary for optimal adult function. Those with intellectual disability have additional transition challenges. Improving the medical transition process for all CYE is vital and necessary. In this article, we will review some of the biologic, behavioral, psychologic, therapeutic, and social considerations for CYE complicating transition. We will then describe general approaches to transitioning CYE to adult care, specifically methods involving creating a framework with overarching transition aims in place, and share our experience at the Children's Hospital of Philadelphia implementing these approaches. Our comprehensive model for a formal transition policy, team structure, and ongoing assessment supporting CYE transitioning into adult care is a practical program that can be integrated into clinical care. Proper investment in the transition process will translate into measurable, significant long-term benefits for all involved.

scholarly journals Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review

10.2196/13579 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e13579 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

Background More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611

Are some more equal than others? Social comparison in self-management skills training for long-term conditions

2009 ◽  
Vol 5 (4) ◽  
pp. 305-317 ◽  
Author(s):  
Anne Rogers ◽  
Claire Gately ◽  
Anne Kennedy ◽  
Caroline Sanders
Keyword(s):  
Social Comparison ◽  
Skills Training ◽  
Self Management ◽  
Management Skills ◽  
Long Term Conditions

scholarly journals Health Care Transition Outcomes in Inflammatory Bowel Disease: A Multinational Delphi Study

2019 ◽  
Vol 13 (9) ◽  
pp. 1163-1172 ◽  
Author(s):  
Gertrude van den Brink ◽  
Martha A C van Gaalen ◽  
Lissy de Ridder ◽  
C Janneke van der Woude ◽  
Johanna C Escher
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Delphi Study ◽  
Expert Panel ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Successful Transition ◽  
Inflammatory Bowel ◽  
Stage 1

Abstract Background Transition programmes are designed to prepare adolescent inflammatory bowel disease [IBD] patients for transfer to adult care. It is still unclear which outcome parameters define ‘successful transition’. Therefore, this study aimed to identify outcomes important for success of transition in IBD. Methods A multinational Delphi study in patients, IBD nurses, and paediatric and adult gastroenterologists was conducted. In stage 1, panellists commented on an outcome list. In stage 2, the refined list was graded from 1 to 9 [least to very important], by an expert and a patient panel. In stage 3, the expert panel ranked important outcomes from 1 to 10 [least to most important]. Descriptive statistics and Mann–Whitney U-tests were performed. Results The final item list developed in stage 1 was tested by the expert [n = 74 participants, 52.7% paediatric] and patient panel [n = 61, aged 16–25 years, 49.2% male]. Respectively, ten and 11 items were found to be important by the expert and patient panel. Both panels agreed on eight of these items, of which six reflected self-management skills. In stage 3, the expert panel formed a top-ten list. The three most important items were: decision-making regarding IBD [mean score 6.7], independent communication [mean score 6.3] and patient satisfaction [mean score 5.8]. Conclusion This is the first study identifying outcomes that IBD healthcare providers and patients deem important factors for successful transition. Self-management skills were considered more important than IBD-specific items. This is a first step to further define success of transition in IBD and subsequently evaluate the efficacy of different transition models.

scholarly journals Recommendations for the use of long-term experience sampling in bipolar disorder care: a qualitative study of patient and clinician experiences

2020 ◽  
Vol 8 (1) ◽  
Author(s):  
Fionneke M. Bos ◽  
Evelien Snippe ◽  
Richard Bruggeman ◽  
Bennard Doornbos ◽  
Marieke Wichers ◽  
...  
Keyword(s):  
Bipolar Disorder ◽  
Real Time ◽  
Clinical Care ◽  
Experience Sampling ◽  
Self Management ◽  
Type I ◽  
Feedback Report ◽  
Personalized Feedback ◽  
Self Monitoring

Abstract Background Self-monitoring has been shown to improve the self-management and treatment of patients with bipolar disorder. However, current self-monitoring methods are limited to once-daily retrospectively assessed mood, which may not suit the rapid mood fluctuations in bipolar disorder. The experience sampling method (ESM), which assesses mood in real-time several times a day, may overcome these limitations. This study set out to assess the experiences of patients and clinicians with the addition of ESM monitoring, real-time alerts, and personalized feedback to clinical care. Participants were twenty patients with bipolar disorder type I/II and their clinicians. For four months, patients completed five ESM assessments per day on mood, symptoms, and activities. Weekly symptom questionnaires alerted patients and clinicians to potential episodes. After the monitoring, a personalized feedback report based on the patient’s data was discussed between patient and clinician. Three months later, patient and clinician were both interviewed. Results Thematic analysis of the transcripts resulted in four themes: perceived effects of the monitoring, alerts, and feedback, and recommendations for implementation of ESM. ESM was perceived as helping patients to cope better with their disorder by increasing awareness, offering new insights, and encouraging life style adjustments. ESM was further believed to facilitate communication between patient and clinician and to lead to new treatment directions. However, high assessment burden and pre-occupation with negative mood and having a disorder were also described. Patients and clinicians advocated for increased personalization and embedding of ESM in care. Conclusions This study demonstrates that long-term ESM monitoring, alerts, and personalized feedback are perceived as beneficial to the treatment and self-management of patients with bipolar disorder. Future research should further test the clinical utility of ESM. Clinically relevant feedback and technology need to be developed to enable personalized integration of ESM in clinical care.

scholarly journals QOL-02. PERCEPTIONS OF LATE EFFECTS CARE NEEDS AMONG SURVIVORS OF PEDIATRIC BRAIN TUMOURS

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii431-iii431
Author(s):  
Chantel Cacciotti ◽  
Adam Fleming ◽  
Hanna Tseitlin ◽  
JoAnn Duckworth ◽  
Stacey Marjerrison
Keyword(s):  
Brain Tumour ◽  
Late Effects ◽  
Self Management ◽  
Cancer Worry ◽  
Management Skills ◽  
Care Needs ◽  
Care Experience ◽  
Pediatric Brain

Abstract OBJECTIVES Pediatric brain tumour survivors are at risk of long-term consequences of therapy. Comprehensive late effects care may mitigate these risks, but the best care model is unclear. We sought to describe the care experience and quality of life (QOL) of pediatric brain tumour survivors at the McMaster Children’s Hospital joint adult/pediatric Neuro-Oncology clinic. METHODS Cross-sectional survey data were collected. Care needs were assessed with the Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), and Self-Management Skills Scale (SMSS). Quality of life was measured utilizing the PedsQL Brain Tumor Module. Data were analyzed descriptively. RESULTS Thirty-two childhood brain tumor survivors and/or their parents participated. Their malignancies included embryonal tumors (medulloblastoma/ATRT) (62%), ependymoma (22%), and germ cell tumours (16%). Among 77%, therapy included chemotherapy, surgery and radiation. Most respondents reported high quality cancer care, although some could not recall discussions of late effects risks and health promotion. Mean cancer worry scores were low (71.8 (± 28.4)). Survivors reported limited self-management skills (58.5 (±18.2)), with support required in clinic visits, arranging medical appointments, filling prescriptions and tasks of daily living. Overall median QOL scores were in the ‘good’ range (parental report 72.3 (±17.7), survivor 68.2 (±16.6)). CONCLUSION In comparison to other childhood cancer survivor cohorts, this group of long-term brain tumour survivors appear to have similar QOL, fewer cancer worries, and increased need for aid with self-management. Given this, along with the positive care experience reported, this clinic model of care appears to meet the needs of this population.

scholarly journals Digital Technologies for Children and Parents Sharing Self-Management in Childhood Chronic or Long-Term Conditions: A Scoping Review

Children ◽  
2021 ◽  
Vol 8 (12) ◽  
pp. 1203
Author(s):  
Jill Edwards ◽  
Jenny Waite-Jones ◽  
Toni Schwarz ◽  
Veronica Swallow
Keyword(s):  
Scoping Review ◽  
Mobile Apps ◽  
Digital Technologies ◽  
Self Management ◽  
Management Skills ◽  
Long Term Conditions ◽  
Future Technology ◽  
Parents And Children ◽  
Children And Parents

Worldwide, the prevalence of chronic (or long-term) conditions in children and young people from birth to 18 years (children) is increasing. Promoting competent and effective self-management skills early in the trajectory is important to improve adherence to treatment and optimise quality of life. Successful self-management, therefore, requires parents and children who are developmentally able to develop a range of complex skills, including the use of digital technologies. This scoping review aimed to identify primary research investigating digital technologies for children and parents sharing self-management in childhood chronic illnesses. A comprehensive search of electronic databases was conducted. Nineteen papers were included, assessed for quality and methodological rigour using the Hawker tool and thematically analysed. Three themes were identified: (i) the feasibility and acceptability of using technology, (ii) the usability of technologies and (iii) the effect of technologies on adherence and self-management skills. The results indicate that technologies such as mobile apps and websites can assist the management of long-term conditions, are an acceptable method of delivering information and can promote the development of effective self-management skills by parents and children. However, future technology design must include children and parents in all stages of development.

scholarly journals Promoting Self-Care in Nursing Encounters with Persons Affected by Long-Term Conditions—A Proposed Model to Guide Clinical Care

2021 ◽  
Vol 18 (5) ◽  
pp. 2223
Author(s):  
Carina Hellqvist
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Care ◽  
Self Care ◽  
Self Management ◽  
Unique Contribution ◽  
Management Support ◽  
Data Set ◽  
Long Term Conditions

Background: Nursing interventions for persons affected by long-term conditions should focus on providing support to enhance the ability to manage disease in everyday life. Many clinical nurses feel they have inadequate training or experience to provide self-management support in a beneficial and structured way. This study explores the process towards independent self-care and management of disease in persons affected by Parkinson’s disease and the support required from healthcare to achieve this. It presents a nursing model to guide nurses in providing self-management support in the clinical care encounter. Methods: The results from three previously published articles investigating a self-management support program for persons with Parkinson’s disease were combined to form a new data set, and analyzed using qualitative thematic analysis. Results: Three separate, but interrelated, themes were identified, which described the process towards self-management of disease as expressed by the participants of the self-management program. Themes describe the factors important for developing and improving self-management abilities and actions. The results were applied to Orem’s Self-care deficit theory to suggest a model of self-management support in the clinical nursing encounter. Conclusion: This study investigated factors important for self-management and highlighted the unique contribution and focus of nursing support to promote independent self-care.

scholarly journals Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review (Preprint)

2019 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

BACKGROUND More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. OBJECTIVE This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. METHODS We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. RESULTS A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. CONCLUSIONS There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs.

Russian Federalism at the Critical Stage of Development

2008 ◽  
pp. 70-83 ◽  
Author(s):  
E. Bukhvald
Keyword(s):  
Economic Development ◽  
Social Processes ◽  
Self Management ◽  
Intergovernmental Fiscal Relations ◽  
Critical Stage ◽  
Municipal Reform ◽  
Stage Of Development ◽  
Social And Economic Development ◽  
Basic Course

Transformations in the sphere of federal relations concern the most important directions of the reforming processes in the country. However, not all proposed and actually developing components of the federal reform seem well-argued and corresponding to long-term, strategic interests of the Russian statehood. The basic course of reform should meet the objective requirements of further decentralization of governing economic and social processes and the need to ensure strengthening the responsibility of RF subjects’ executive bodies and local self-management for steady social and economic development of their territories. The solution of these problems calls for a new model of federal policy of regional development, specification of some important components of the municipal reform as well as inserting certain amendments into the system of intergovernmental fiscal relations in order to stir up their stimulating function.

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