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Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood : Concerns and needs of patients and parents from the transitional period to adulthood. / Both, Pauline; Ten Holt, Lyenne; Mous, Sabine; Patist, Joke; Rietman, André; Dieleman, Gwen; Ten Hoopen, Leontine; Vergeer, Menno; de Wit, Marie-Claire; Bindels-de Heus, Karen; Moll, Henriëtte; van Eeghen, Agnies.

In: Epilepsy & behavior, Vol. 83, 06.2018, p. 13-21.

Research output: Contribution to journalArticleAcademicpeer-review

Harvard

Both, P, Ten Holt, L, Mous, S, Patist, J, Rietman, A, Dieleman, G, Ten Hoopen, L, Vergeer, M, de Wit, M-C, Bindels-de Heus, K, Moll, H & van Eeghen, A 2018, 'Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood: Concerns and needs of patients and parents from the transitional period to adulthood', Epilepsy & behavior, vol. 83, pp. 13-21. https://doi.org/10.1016/j.yebeh.2018.03.012

APA

Both, P., Ten Holt, L., Mous, S., Patist, J., Rietman, A., Dieleman, G., Ten Hoopen, L., Vergeer, M., de Wit, M-C., Bindels-de Heus, K., Moll, H., & van Eeghen, A. (2018). Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood: Concerns and needs of patients and parents from the transitional period to adulthood. Epilepsy & behavior, 83, 13-21. https://doi.org/10.1016/j.yebeh.2018.03.012

Vancouver

Author

Both, Pauline ; Ten Holt, Lyenne ; Mous, Sabine ; Patist, Joke ; Rietman, André ; Dieleman, Gwen ; Ten Hoopen, Leontine ; Vergeer, Menno ; de Wit, Marie-Claire ; Bindels-de Heus, Karen ; Moll, Henriëtte ; van Eeghen, Agnies. / Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood : Concerns and needs of patients and parents from the transitional period to adulthood. In: Epilepsy & behavior. 2018 ; Vol. 83. pp. 13-21.

BibTeX

@article{7138cb27509443d98ed09dd7e307774b,
title = "Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood: Concerns and needs of patients and parents from the transitional period to adulthood",
abstract = "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.",
keywords = "Adolescent, Adult, Delivery of Health Care/trends, Disabled Persons/psychology, Female, Health Services Needs and Demand/trends, Humans, Male, Middle Aged, Parents/psychology, Qualitative Research, Transitional Care/trends, Tuberous Sclerosis/diagnosis, Young Adult",
author = "Pauline Both and {Ten Holt}, Lyenne and Sabine Mous and Joke Patist and Andr{\'e} Rietman and Gwen Dieleman and {Ten Hoopen}, Leontine and Menno Vergeer and {de Wit}, Marie-Claire and {Bindels-de Heus}, Karen and Henri{\"e}tte Moll and {van Eeghen}, Agnies",
note = "Copyright {\textcopyright} 2018. Published by Elsevier Inc.",
year = "2018",
month = jun,
doi = "10.1016/j.yebeh.2018.03.012",
language = "English",
volume = "83",
pages = "13--21",
journal = "Epilepsy & behavior",
issn = "1525-5050",
publisher = "Academic Press Inc.",

}

RIS

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

Y1 - 2018/6

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 - Delivery of Health Care/trends

KW - Disabled Persons/psychology

KW - Female

KW - Health Services Needs and Demand/trends

KW - Humans

KW - Male

KW - Middle Aged

KW - Parents/psychology

KW - Qualitative Research

KW - Transitional Care/trends

KW - Tuberous Sclerosis/diagnosis

KW - Young Adult

U2 - 10.1016/j.yebeh.2018.03.012

DO - 10.1016/j.yebeh.2018.03.012

M3 - Article

C2 - 29631156

VL - 83

SP - 13

EP - 21

JO - Epilepsy & behavior

JF - Epilepsy & behavior

SN - 1525-5050

ER -

ID: 6848610