Disease and medication burden of medically complex adolescents seen in an interdisciplinary transitional care clinic

2021 ◽  
pp. 1-8
Author(s):  
Scott Bolesta ◽  
Andrea Berger ◽  
Emily Black ◽  
Gerard A. Greskovic ◽  
Thomas W. Davis
Keyword(s):  
Medication Reconciliation ◽  
Complex Disease ◽  
Transitional Care ◽  
Median Number ◽  
Transition To Adult Care ◽  
Study Cohort ◽  
Adult Care ◽  
Care Clinic ◽  
Disease States ◽  
Average Patient

PURPOSE: Transitional care for adolescents with complex diseases, who are entering adulthood, is challenging. The purpose of this study is to quantify the disease and medication burden of this population, who are transitioning though an interdisciplinary specialty clinic. METHODS: This study is a retrospective observational study of all patients seen in a transitional care clinic between July 2012 and March 2015. The main outcomes assessed included disease state and medication burden. Descriptive statistics, along with the paired t-test and McNemar’s test, were used. RESULTS: The study cohort included 216 patients. The average patient age was 20.7 years, and the median number of clinic encounters was 6. Patients had at least 1 of 8 primary diagnoses. On average, patients took medications from 5 classes and used 3 dose forms. Among 163 patients who had medication reconciliation performed, the average number of medication classes increased by 0.44±1.51 (p = 0.003). There was an average increase of 3.70%(SD±36.31%; p = 0.27) in the number of required medication lab assessments ordered for patients who had medication reconciliation performed. CONCLUSION: There is a high disease and medication burden among adolescent patients with complex disease states who are to transition to adult care.

scholarly journals Symposium 6: Young people, artificial nutrition and transitional care Nutrition, growth and puberty in children and adolescents with Crohn's disease

2009 ◽  
Vol 69 (1) ◽  
pp. 174-177 ◽  
Author(s):  
R. M. Beattie
Keyword(s):  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Transitional Care ◽  
Adult Life ◽  
Normal Growth ◽  
Transition To Adult Care ◽  
Artificial Nutrition ◽  
Adult Care ◽  
Final Adult Height ◽  
Delayed Growth

Of the individuals who present with Crohn's disease 25% are <18 years of age, mostly adolescent. Nutritional impairment and delayed growth are common at diagnosis and remain an issue during the disease course. Treatment has the primary aim to control symptoms, induce disease remission and achieve normal growth in the long term and includes nutritional support and early use of immunomodulation. Puberty may be discordant and is generally late and final adult height may not be achieved until the late teenage years. Chronic ill health and delayed growth may be accompanied by emotional and intellectual immaturity. These factors, including the varying rates of physical and emotional development, need to be considered during adolescence with multidisciplinary input to ensure that the young patient is appropriately supported. Transition to adult care requires close collaboration between paediatric and healthcare teams with careful attention to nutritional, emotional and educational issues, all of which are relevant in the progression from childhood, through adolescence and to adult life.

Transition from a renal paediatric clinic to an adult clinic: Perspectives of adolescents and young adults, parents and health professionals

2021 ◽  
pp. 136749352110284
Author(s):  
Kimberley Crawford ◽  
Jac Kee Low ◽  
Amelia K Le Page ◽  
William Mulley ◽  
Rosemary Masterson ◽  
...  
Keyword(s):  
Young Adults ◽  
Health Professionals ◽  
Transitional Care ◽  
Transition Process ◽  
Adolescents And Young Adults ◽  
Transition To Adult Care ◽  
Adult Health ◽  
Structured Interviews ◽  
Adult Care ◽  
Health Services Need

The management of chronic kidney disease is complex. With disease management being the responsibility of parents in the paediatric renal clinic, the responsibility is gradually shifted to adolescents and young adults during the transition to adult care. This multi-perspective qualitative study aimed to explore the experiences of adolescents and young adults, their parents and health professionals to gain an insight into transitional care. Focussing on the transition process and transfer to adult care, 18 adolescents and young adults and eight mothers participated in individual semi-structured interviews. Additionally, three focus groups were conducted with 20 multidisciplinary health professionals. Data were transcribed verbatim and analysed thematically. Similar responses from adolescents and young adults and mothers included the reluctance to leave the paediatric health service. Mothers found the transition to adult care more challenging than the adolescents and young adults. While health professionals acknowledged that engaging adolescents and young adults in their own care was challenging, they believed parents had an important role in facilitating their child’s independence. This study highlights that health professionals in both paediatric and adult health services need to work collaboratively. However, importantly, health professionals need to be mindful that parents require an equal amount of engagement as adolescents and young adults, if not more, to mitigate parental barriers in achieving a successful transfer.

Pharmacological Considerations When Transitioning the Care of Epilepsy Patients from Pediatric to Adult Epilepsy Centers

2020 ◽  
Vol 09 (04) ◽  
pp. 177-185
Author(s):  
Natalie Guido-Estrada ◽  
Shifteh Sattar
Keyword(s):  
Medication Compliance ◽  
Lifestyle Changes ◽  
Transition To Adult Care ◽  
Pediatric Epilepsy ◽  
Transition Of Care ◽  
Adult Health ◽  
Adult Care ◽  
Adult Model ◽  
Antiepileptic Medications ◽  
The Many

AbstractThere is scarce evidence in review of the available literature to support a clear and superior model for the transition of care for epilepsy patients from pediatric to adult centers. Anecdotally, there is a common perception that families are reluctant to make this change and that the successful transition of care for epilepsy can be a challenge for patients, families, and physicians. As part of the effort to prepare the patient and family for the adult model of care, several treatment issues should be addressed. In this article, we discuss the specific challenges for physicians in transition of care for epilepsy patients from a pharmacological standpoint, which include differences in metabolism and pharmacodynamics that can impact tolerability or efficacy of antiepileptic medications, lifestyle changes affecting medication compliance and seizure control, acquired adult health conditions necessitating new medications that may result in adverse drug interactions, and adult neurologists' potential lack of familiarity with certain medications typically used in the pediatric epilepsy population. We offer this as a guide to avoid one of the many possible pitfalls when epilepsy patients transition to adult care.

scholarly journals Does inflammatory bowel disease have different characteristics according to stage of adolescence?

2021 ◽  
Vol 14 ◽  
pp. 175628482098667
Author(s):  
Kata Judit Szántó ◽  
Tamás Balázs ◽  
Dóra Mihonné Schrempf ◽  
Klaudia Farkas ◽  
Tamás Molnár
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Severe Disease ◽  
Transition To Adult Care ◽  
Insurance Fund ◽  
Late Adolescent ◽  
Adult Care ◽  
Adolescent Group ◽  
Adolescent Patients ◽  
Inflammatory Bowel

Background: There is a lack of data about demographic and treatment characteristics of adolescent patients with inflammatory bowel disease (IBD). The aim of this retrospective, epidemiological study was to evaluate characteristics and therapeutic features of Hungarian adolescents with IBD. Methods: We analysed the social security databases of the National Health Insurance Fund. Adolescent patients with IBD for whom data from 2009 to 2016 were observable in the database were enrolled. Patients aged 14 to 17 years and 18 to 21 years were defined as middle and late adolescent patients. Results: The incidences of IBD were 20.12 per 100,000 middle adolescent patients and 29.72 per 100,000 late adolescent patients. Admission to gastroenterology department was higher in both groups compared with admissions to surgery department. Mesalazine was used by a high proportion of Crohn’s disease and ulcerative colitis patients. Rates of corticosteroid use were similar in both groups, with a tendency to decrease over time. The need for biologic agents was higher in the middle adolescent patients. The proportion of patients in the middle adolescent group who received anti-TNF therapy showed an increasing tendency. Conclusion: Our data suggest differences in the treatment strategies of gastroenterologists for these age groups. The greater need of anti-TNF therapy among the middle adolescent group indicates that adolescent patients before the transition to adult care may have a more severe disease phenotype. We expect that a strategy of early, effective treatment will significantly ameliorate the subsequent disease course, which is manifested in adult care.

scholarly journals Predictors of Urgent Cancer Care Clinic and Emergency Department Visits for Individuals Diagnosed with Cancer

2021 ◽  
Vol 28 (3) ◽  
pp. 1773-1789
Author(s):  
Kathleen Decker ◽  
Pascal Lambert ◽  
Katie Galloway ◽  
Oliver Bucher ◽  
Marshall Pitz ◽  
...  
Keyword(s):  
Emergency Department ◽  
Mixed Models ◽  
Cancer Care ◽  
Median Number ◽  
Emergency Department Visits ◽  
Planning Service ◽  
Care Clinic ◽  
Future Studies ◽  
Acute Complications ◽  
Ed Visits

In 2013, CancerCare Manitoba (CCMB) launched an urgent cancer care clinic (UCC) to meet the needs of individuals diagnosed with cancer experiencing acute complications of cancer or its treatment. This retrospective cohort study compared the characteristics of individuals diagnosed with cancer that visited the UCC to those who visited an emergency department (ED) and determined predictors of use. Multivariable logistic mixed models were run to predict an individual’s likelihood of visiting the UCC or an ED. Scaled Brier scores were calculated to determine how greatly each predictor impacted UCC or ED use. We found that UCC visits increased up to 4 months after eligibility to visit and then decreased. ED visits were highest immediately after eligibility and then decreased. The median number of hours between triage and discharge was 2 h for UCC visits and 9 h for ED visits. Chemotherapy had the strongest association with UCC visits, whereas ED visits prior to diagnosis had the strongest association with ED visits. Variables related to socioeconomic status were less strongly associated with UCC or ED visits. Future studies would be beneficial to planning service delivery and improving clinical outcomes and patient satisfaction.

scholarly journals The biopsychosocial condition of childhood cancer survivors in the transition towards adult care: a national survey from the joint pediatric and adult transition care group

2018 ◽  
Vol 0 (0) ◽  
Author(s):  
Giulia Zucchetti ◽  
Simona Bellini ◽  
Marina Bertolotti ◽  
Eleonora Biasin ◽  
Enrico Brignardello ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Adolescent And Young Adult ◽  
Transition To Adult Care ◽  
Care Group ◽  
Adult Care ◽  
Care Plans ◽  
Health Domains ◽  
The Moment

AbstractBackgroundTo provide successful transfer from childhood to adult-oriented healthcare is one of the priorities of survivorship care plans.PurposeThis study describes adolescent and young adult childhood cancer survivors’ conditions at the moment of the transition to adult care deepening their biological, psychological, social and assistant state and their associations with socio-demographic and clinical characteristics.MethodsA biopsychosocial check-list in four health domains (biological, psychological, social and assistant) was filled in by healthcare professionals (oncologists, psychologists, social workers and nurses) through qualitative interviews and clinical observations of 79 survivors (58% boys; Mage= 20 years old) at the moment of the transition from the Pediatric Oncology Unit to the Transition Unit of the Childhood Cancer Survivors.ResultsAt the moment of transition, 38% of survivors showed a positive condition in all the four health domains without any kind of impairment. Biological (37%) and psychological areas (44%) were found to be those with major incidence of impairments. Association phenomena were found between psychological and social condition (p < 0.05) and between social and assistant condition (p < 0.05). Biological condition was also significantly associated with the type of cancer (χ = 6,2414, p < 0.05).ConclusionAlthough many survivors entered in adult care system without any impairment, the biopsychosocial approach highlighted that there is a presence of impairments in at least one of the main health domains.

scholarly journals Living with systemic lupus erythematosus in 2020: a European patient survey

2021 ◽  
Vol 8 (1) ◽  
pp. e000469
Author(s):  
Alain Cornet ◽  
Jeanette Andersen ◽  
Kirsi Myllys ◽  
Angela Edwards ◽  
Laurent Arnaud
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
Complex Disease ◽  
Renal Involvement ◽  
Median Number ◽  
Sexual Life ◽  
Diagnosis Delay ◽  
Systemic Lupus ◽  
Organ Systems

ObjectiveThe aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective.MethodsIn May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician’s diagnosis of SLE living in Europe.ResultsData from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36–54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22–40) and the median diagnosis delay was 2 years (IQR: 0–6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6–11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3–7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component.ConclusionThis survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient’s perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.

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