Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease

Overview

Journal Children (Basel)

Specialty Health Services

Date 2022 Jul 27

PMID 35884083

Authors

Maureen E Lyon

Lori Wiener

Affiliations

Soon will be listed here.

Abstract

This Special Issue of the journal constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families [...].

Citing Articles

Impact of mental health in persons living with rare disease: Findings from the AMCP Market Insights Program.

Richardson T, Rice M, Lyon M, Kobernick M, Brackbill L J Manag Care Spec Pharm. 2024; 30(7-b Suppl):S1-S11.

PMID: 38953469 PMC: 11318483. DOI: 10.18553/jmcp.2024.30.7-b.s1.

Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.

Tsitsani P, Katsaras G, Soteriades E Pediatr Rep. 2023; 15(3):462-482.

PMID: 37606447 PMC: 10443320. DOI: 10.3390/pediatric15030043.

NCI intramural program approach to rare tumors: Natural history study of rare solid tumors in children and adults: A longitudinal, comprehensive data and biospecimen collection protocol.

Wedekind M, Reilly K, Del Rivero J, Lockridge R, Allen T, Raygada M Pediatr Blood Cancer. 2023; :e30495.

PMID: 37345354 PMC: 10733551. DOI: 10.1002/pbc.30495.

References

Fratantoni K, Livingston J, Schellinger S, Aoun S, Lyon M . Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases. Children (Basel). 2022; 9(3). PMC: 8947189. DOI: 10.3390/children9030445. View

Scharping M, Brennenstuhl H, Garbade S, Wild B, Posset R, Zielonka M . Unmet Needs of Parents of Children with Urea Cycle Disorders. Children (Basel). 2022; 9(5). PMC: 9140128. DOI: 10.3390/children9050712. View

Kreicbergs U, Nilsson S, Nolbris M, Lovgren M . Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs. Children (Basel). 2022; 9(5). PMC: 9139212. DOI: 10.3390/children9050641. View

Allen T, Reda S, Martin S, Long P, Franklin A, Bedoya S . The Needs of Adolescents and Young Adults with Chronic Illness: Results of a Quality Improvement Survey. Children (Basel). 2022; 9(4). PMC: 9025253. DOI: 10.3390/children9040500. View

Lockridge R, Bedoya S, Allen T, Widemann B, Akshintala S, Glod J . Psychosocial Characteristics and Experiences in Patients with Multiple Endocrine Neoplasia Type 2 (MEN2) and Medullary Thyroid Carcinoma (MTC). Children (Basel). 2022; 9(6). PMC: 9221799. DOI: 10.3390/children9060774. View

Sandquist M, Davenport T, Monaco J, Lyon M . The Transition to Adulthood for Youth Living with Rare Diseases. Children (Basel). 2022; 9(5). PMC: 9139297. DOI: 10.3390/children9050710. View

Aoun S, Stegmann R, Deleuil R, Momber S, Cuddeford L, Phillips M . "It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care. Children (Basel). 2022; 9(3). PMC: 8947323. DOI: 10.3390/children9030322. View

Wawrzynski S, Alderfer M, Kvistad W, Linder L, Reblin M, Guo J . The Social Networks and Social Support of Siblings of Children with Cancer. Children (Basel). 2022; 9(1). PMC: 8774421. DOI: 10.3390/children9010113. View

Brunetta J, Fahner J, Legemaat M, van den Bergh E, Krommenhoek K, Prinsze K . Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review. Children (Basel). 2022; 9(6). PMC: 9221719. DOI: 10.3390/children9060830. View

10.

Butti N, Castagna A, Montirosso R . Psychosocial Difficulties in Preschool-Age Children with Beckwith-Wiedemann Syndrome: An Exploratory Study. Children (Basel). 2022; 9(4). PMC: 9024744. DOI: 10.3390/children9040551. View

11.

Belzer L, Wright S, Goodwin E, Singh M, Carter B . Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action. Children (Basel). 2022; 9(7). PMC: 9325007. DOI: 10.3390/children9070933. View

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Chu S, Wen C, Weng C . Gender Differences in Caring for Children with Genetic or Rare Diseases: A Mixed-Methods Study. Children (Basel). 2022; 9(5). PMC: 9139271. DOI: 10.3390/children9050627. View

13.

McCarthy S, Golembiewski E, Gravholt D, Clark J, Clark J, Fischer C . Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions. Children (Basel). 2022; 9(5). PMC: 9139272. DOI: 10.3390/children9050664. View