TY - JOUR
T1 - Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood
T2 - Concerns and needs of patients and parents from the transitional period to adulthood
AU - Both, Pauline
AU - Ten Holt, Lyenne
AU - Mous, Sabine
AU - Patist, Joke
AU - Rietman, André
AU - Dieleman, Gwen
AU - Ten Hoopen, Leontine
AU - Vergeer, Menno
AU - de Wit, Marie-Claire
AU - Bindels-de Heus, Karen
AU - Moll, Henriëtte
AU - van Eeghen, Agnies
N1 - Copyright © 2018. Published by Elsevier Inc.
PY - 2018/6/1
Y1 - 2018/6/1
N2 - INTRODUCTION: Transitioning into adulthood and from pediatric services to adult healthcare are both challenging processes for young adults with rare chronic disorders such as tuberous sclerosis complex (TSC) and their parents. Adult healthcare systems are often less family-oriented and lack multidisciplinary care and experience with TSC, which can result in increased health risks and morbidity. Patient-driven data on care needs are necessary to optimize support for this vulnerable patient group.AIM: The aim of this study was to explore the concerns and care needs of young adult patients with TSC in medical, psychological, and socioeconomical domains.METHOD: A qualitative study was performed using semistructured interviews with 16 patients (median age: 21years; range: 17 to 30) and 12 parents. Concerns and care needs were organized using the International Classification of Functioning, Disability, and Health (ICF).RESULTS: Main concerns involved mental and physical health, participation, self-management skills, family planning, and side effects of medications. Patients expressed the need for multidisciplinary care that is well-informed, easily accessible, and focused on the patient as a whole, including his/her family. Parents reported high stress levels.CONCLUSION: The current study provides patient-driven information, allowing recommendations to facilitate the (transition of) care for young adults with TSC. In addition to seizures, tumor growth, and TSC-associated neuropsychiatric disorders (TAND), more attention is needed for concerns and care needs specific to the transitional period, participation, and environmental factors. Adult healthcare providers should offer expert multidisciplinary care for adult patients with TSC, including attention for parental stress.
AB - INTRODUCTION: Transitioning into adulthood and from pediatric services to adult healthcare are both challenging processes for young adults with rare chronic disorders such as tuberous sclerosis complex (TSC) and their parents. Adult healthcare systems are often less family-oriented and lack multidisciplinary care and experience with TSC, which can result in increased health risks and morbidity. Patient-driven data on care needs are necessary to optimize support for this vulnerable patient group.AIM: The aim of this study was to explore the concerns and care needs of young adult patients with TSC in medical, psychological, and socioeconomical domains.METHOD: A qualitative study was performed using semistructured interviews with 16 patients (median age: 21years; range: 17 to 30) and 12 parents. Concerns and care needs were organized using the International Classification of Functioning, Disability, and Health (ICF).RESULTS: Main concerns involved mental and physical health, participation, self-management skills, family planning, and side effects of medications. Patients expressed the need for multidisciplinary care that is well-informed, easily accessible, and focused on the patient as a whole, including his/her family. Parents reported high stress levels.CONCLUSION: The current study provides patient-driven information, allowing recommendations to facilitate the (transition of) care for young adults with TSC. In addition to seizures, tumor growth, and TSC-associated neuropsychiatric disorders (TAND), more attention is needed for concerns and care needs specific to the transitional period, participation, and environmental factors. Adult healthcare providers should offer expert multidisciplinary care for adult patients with TSC, including attention for parental stress.
KW - Adolescent
KW - Adult
KW - Adults
KW - Delivery of Health Care/trends
KW - Disabled Persons/psychology
KW - Female
KW - Health Services Needs and Demand/trends
KW - Humans
KW - ICF classification
KW - Male
KW - Middle Aged
KW - Parents/psychology
KW - Qualitative Research
KW - TSC-associated neuropsychiatric disorders
KW - Transition
KW - Transitional Care/trends
KW - Tuberous Sclerosis/diagnosis
KW - Tuberous sclerosis complex
KW - Young Adult
UR - http://www.scopus.com/inward/record.url?scp=85044955038&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.yebeh.2018.03.012
DO - https://doi.org/10.1016/j.yebeh.2018.03.012
M3 - Article
C2 - 29631156
SN - 1525-5050
VL - 83
SP - 13
EP - 21
JO - Epilepsy & Behavior
JF - Epilepsy & Behavior
ER -