scholarly journals Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Jordan E. Roberts ◽  
Olha Halyabar ◽  
Carter R. Petty ◽  
Mary Beth Son
Keyword(s):  
Prescription Medication ◽  
Patient Survey ◽  
Self Management ◽  
Longitudinal Assessment ◽  
Single Center ◽  
White Youth ◽  
Adult Care ◽  
Medication Counseling ◽  
Taking Charge ◽  
Transition Preparation

Abstract Background Despite the risk for poor outcomes and gaps in care in the transfer from pediatric to adult care, most pediatric rheumatology centers lack formal transition pathways. As a first step in designing a pathway, we evaluated preparation for transition in a single-center cohort of adolescents and young adults (AYA) with rheumatologic conditions using the ADolescent Assessment of Preparation for Transition (ADAPT) survey. Findings AYA most frequently endorsed receiving counseling on taking charge of their health and remembering to take medications. Less than half reported receiving specific counseling about transferring to an adult provider. AYA with lower education attainment compared with those who had attended some college or higher had lower scores in self-management (1.51 vs 2.52, p = 0.0002), prescription medication counseling (1.96 vs 2.41, p = 0.029), and transfer planning (0.27 vs 1.62, p < 0.001). AYA with a diagnosis of MCTD, Sjögren’s or SLE had higher self-management scores than those with other diagnoses (2.6 vs 1.9; p = 0.048). Non-white youth indicated receiving more thorough medication counseling than white youth (2.71 vs 2.07, p = 0.027). When adjusting for age, educational attainment remained an independent predictor of transfer planning (p = 0.037). AYA with longer duration of seeing their physician had higher transition preparation scores (p = 0.021). Conclusion Few AYA endorsed receiving comprehensive transition counseling, including discussion of transfer planning. Those who were younger and with lower levels of education had lower preparation scores. A long-term relationship with providers was associated with higher scores. Further research, including longitudinal assessment of transition preparation, is needed to evaluate effective processes to assist vulnerable populations.

Perspectives on mental health among patients receiving dialysis

2020 ◽  
Author(s):  
Melissa Nataatmadja ◽  
Nicole Evangelidis ◽  
Karine E Manera ◽  
Yeoungjee Cho ◽  
David W Johnson ◽  
...  
Keyword(s):  
Mental Health ◽  
Symptom Burden ◽  
Self Management ◽  
Health Practitioners ◽  
Taking Charge ◽  
Mental Health Support ◽  
Health Support ◽  
Mental Wellness ◽  
Uncertain Future ◽  
Using Data

Abstract Background Diminished mental health is associated with increased morbidity and mortality and may contribute to loss of independence and motivation in patients receiving dialysis and their caregivers. Increased understanding of the patient perspective on triggers, impacts and strategies for managing mental health may inform ways to address mental health conditions in this population. Methods A secondary thematic analysis was undertaken using data from the Standardized Outcomes in Nephrology (SONG)-Hemodialysis and SONG-Peritoneal Dialysis projects. We extracted and analysed data on the perceived causes, meaning, impact and management of mental health in patients receiving dialysis from 26 focus groups (in six countries), multinational Delphi surveys and consensus workshops. Results A total of 644 patients and caregivers participated. We identified five themes: bound to dialysis (forced into isolation, enslaved to a machine, stress of relentless planning and grieving the loss of a normal life), underrecognized and ignored (missed by health practitioners, need for mental health support), an uncertain future (dreading complications, coming to terms with mortality), developing self-reliance (vulnerability in being solely responsible for dialysis, sustaining motivation for dialysis, necessity for self-vigilance and taking charge to regulate emotions) and responding to a lifestyle overhaul (guilt of burdening family, controlling symptoms for overall mental wellness, protecting independence and trying to feel grateful). Conclusions Patients receiving dialysis and their caregivers endure mental and emotional distress attributed to the burden of dialysis, lifestyle restrictions, the constant threat of death and symptom burden, which can impair motivation for self-management. Increased attention to monitoring and management of mental health in this population is needed.

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

scholarly journals Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3536-3536
Author(s):  
Cecelia Calhoun ◽  
Regina Abel ◽  
Hai Anh Pham ◽  
Shomari Thompson ◽  
Allison A King
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Psychosocial Development ◽  
Sexual Development ◽  
Independent Living ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness

Abstract Background: The transition from the pediatric setting to adult care is a challenge for many adolescents with chronic disease. Patients with sickle cell disease (SCD) represent a unique cohort as the timing of psychosocial development of adolescence often coincides with worsening end organ damage. Previously, we used the Adolescent Autonomy Checklist (AAC) modified to include SCD specific tasks that patients with SCD need to practice in order to transition to adult healthcare and independent living. This study sought to use the AAC to measure the effects of skill based educational handouts on improving self-management and transition readiness in adolescents with SCD. Methods: This was a single center, retrospective study approved by the Washington University Institutional Review Board. Inclusion criteria were patients with SCD, age 13-21 years, and completion of pre and post assessments. As standard care, patients from a pediatric hematology clinic completed the AAC-SCD. The AAC-SCD assesses skill level in twelve domains (Table). The tool includes 100 items, and users check "can do already" or "needs practice" for each item. After review with the coordinator, participants were given skill-based handouts based on up to five noted deficits. Patients completed the AAC-SCD at the subsequent clinic visit. In addition to baseline and follow up AAC-SCD data, medical and demographic data were collected via chart abstraction. All data were entered into SPSS for statistical analysis, including descriptives, paired sample T-tests, and bivariate Pearson's correlations. Results: A total of 61 patients completed baseline and follow up. Of those participants, 49.2% were female. The mean age was 15.4 (+ 2.2) years. The genotypic distribution was as follows: 67.2% HbSS, 19.7% HbSC, 3.3% HbS-beta-thal+ and 9.8% HbS-beta-thal0. The majority of patients received healthcare coverage via Medicaid (52.5%), private insurance (45.6%) and 1.6% had no insurance coverage. Twenty-five patients (42.0 %) had a history of stroke or silent cerebral infarct and 34 (55.7%) were currently taking or were previously prescribed hydroxyurea. Formal academic support (IEP or 504 Plan) was reported for 20 (32.8%) of patients. At baseline, patients needed the most help with skills in the kitchen, housekeeping, personal care and leisure. Statistically significant improvements (p< 0.05) occurred in skills related to laundry, housekeeping, healthcare, sexual development and living arrangements. Modest sized and statistically significant correlation between the receipt of the educational handouts and decreased number of items marked "needs help" occurred in the areas of money management (r=-0.27, p=0.044), vocational skills (r=-0.27, p=0.046;) and laundry (r=0.32, p=0.015). A post hoc analysis by age groups 13-15 (n= 34),16-18 (n=24) and 19-21 (n=3) showed a decreased amount of items marked "needs help" in the areas of sexual development for both 13-15 year olds (r=0.42, p=0.024) and 16-18 year olds (r=0.93, p=0.001) as well. Conclusion: Transition skills improved over time among adolescents with SCD. While we cannot say for certain if gains in knowledge occur with age as development progresses or if a formal transition program can be credited, providing educational materials on transition related skills within a clinic setting was associated with significant improvements in three of the domains. Our preliminary data offers insight into what skill deficits may be most amenable to educational interventions based on age group. As is the case with medical management, the development of a multimodal intervention is needed to prepare adolescents with SCD to transition to adult care and independent living. Clinic based education is a simple intervention that could be one component of future approaches to transition. Disclosures No relevant conflicts of interest to declare.

scholarly journals Experiences and perspectives of the parents of emerging adults living with type 1 diabetes

2020 ◽  
Vol 8 (1) ◽  
pp. e001125
Author(s):  
Cheryl Pritlove ◽  
Benjamin Markowitz ◽  
Geetha Mukerji ◽  
Andrew Advani ◽  
Janet A Parsons
Keyword(s):  
Type 1 Diabetes ◽  
Emerging Adulthood ◽  
Emerging Adults ◽  
Diabetes Management ◽  
Self Management ◽  
Comparative Approach ◽  
Transition To Adult Care ◽  
Adult Care ◽  
Difficult Time

IntroductionWhereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child’s diabetes ‘self’-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes.Research design and methodsSemi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach.ResultsAnalysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent–child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child’s diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a ‘new normal’ for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child’s readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings.ConclusionsAdult healthcare providers should recognize both the ongoing involvement of parents in the ‘self’-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.

scholarly journals Lending an Ear: iPeer2Peer plus Teens Taking Charge online self-management to empower adolescents with arthritis in Ireland: protocol for a pilot randomised controlled trial

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e027952 ◽  
Author(s):  
Siobhan O'Higgins ◽  
Jennifer Stinson ◽  
Sara Ahola Kohut ◽  
Line Caes ◽  
Caroline Heary ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
Peer Support ◽  
Qualitative Content Analysis ◽  
Controlled Trial ◽  
Self Management ◽  
Advisory Panel ◽  
Post Intervention ◽  
Pilot Randomised Controlled Trial ◽  
Taking Charge ◽  
Randomised Controlled

IntroductionJuvenile idiopathic arthritis (JIA) negatively affects adolescents’ everyday activities. To address the need for innovative, effective, convenient, low-cost psychosocial self-management programmes, we developed an Irish version of Canadian Teens Taking Charge (TTC) and integrated it with Skype-based peer support iPeer2Peer (iP2P).ObjectivesTo explore the feasibility and preliminary outcome impact (effectiveness) of an integrated iP2P and Irish TTC, via three-arm (treatment as usual, TTC and iP2P–TTC) pilot randomised controlled trial (RCT); and determine feasibility and sample size for a full RCT. To ensure active involvement of adolescents with JIA via a Young Person Advisory Panel and examine how participants experienced the study. Finally, to see if TTC and iP2P with TTC reduce costs for families.Methods and analysisRecruitment of 60 families will be ongoing until July 2019, via healthcare professionals and support groups. Analysis will consist of single-blinded (outcome assessment), three-arm pilot RCT, using online questionnaires, with assessments at baseline (T1), after intervention (T2) and 3 months post-intervention (T3). The primary outcomes on feasibility with comparisons of TTC and iP2P–TTC on fidelity, acceptability and satisfaction, engagement and degrees of tailoring. The secondary outcomes will be self-management and self-efficacy and a range of health-related quality-of-life factors, pain indicators and costs.Participants from the intervention groups will be invited to share their perspectives on the process in semistructured interviews. Quantitative data will be analysed using SPSS V.21 and the audio-taped and transcribed qualitative data will be analysed using qualitative content analysis.DisseminationVia journal articles, conference presentations, co-delivered by key stakeholders when possible, launch of accessible, effective and sustainable Internet self-management and peer support for Irish adolescents with JIA.Trial registration numberISRCTN13535901; Pre-results.

scholarly journals Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study (Preprint)

2019 ◽  
Author(s):  
Anjelica C Saulsberry ◽  
Jason R Hodges ◽  
Audrey Cole ◽  
Jerlym S Porter ◽  
Jane Hankins
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Participation Rate ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Web Based ◽  
Disease Knowledge ◽  
Transition Readiness ◽  
One Step

BACKGROUND Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. OBJECTIVE The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. METHODS This was a single-center, Institution Review Board–approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. RESULTS Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (<italic>r</italic>=0.47) was found between the number of STEP modules completed and disease knowledge scores (<italic>P</italic>=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed &lt;3 STEP modules (<italic>U</italic>=149.00; <italic>P</italic>=.007). CONCLUSIONS Improvement in disease knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care.

Factors Affecting Type One Diabetes Self-Management According to Youth and Parents (Preprint)

2020 ◽  
Author(s):  
Janet Panoch ◽  
Lisa Yazel ◽  
Courtney Moore ◽  
Sarah Wiehe ◽  
Tamara Hannon
Keyword(s):  
Type 1 Diabetes ◽  
Decision Support ◽  
Decision Support Tool ◽  
Self Management ◽  
Adult Care ◽  
Patient Centered ◽  
Diabetes Clinic ◽  
Human Centered Design ◽  
Support Tool

BACKGROUND Adolescents with type 1 diabetes differ from their parents and physicians about what they need from healthcare. Therefore, it is important to implement patient-centered diabetes care for adolescents. OBJECTIVE This study used human-centered design to reveal diabetes self-management challenges faced by youth with type 1 diabetes and their parents. This was a pre-study design phase of a larger study to develop a patient-centered automated decision support tool for diabetes clinic. METHODS Data were collected from youth and parents in two settings 1) a diabetes summer camp to capture challenges faced by youth and parents, 2) youth and parents participating in human-centered design sessions to further explore challenges. RESULTS Fifty-six people completed the camp worksheet, identifying 15 unique themes. The sessions further verified three problematic themes each for youth and parents. Youth generated 23 questions and parents identified 33 questions for potential use for the decision support tool development. CONCLUSIONS Including patient and parent self-management needs is vital. Providers should understand the psychosocial factors associated with barriers to self-management. The incorporation of patient and parent questions, ideas, and subsequent patient-provider communication in the support tool may improve trust in the provider and youth self-efficacy as they navigate the transition to independent adult care. CLINICALTRIAL Trial Registration: ClinicalTrials.gov NCT03084900

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.

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