Survivorship care plan experiences among childhood acute lymphoblastic leukemia patients and their families.
Adolescent
Adult
Child
Child, Preschool
Combined Modality Therapy
Continuity of Patient Care
/ organization & administration
Female
Humans
Infant
Infant, Newborn
Male
Middle Aged
Patient Care Planning
/ organization & administration
Precursor Cell Lymphoblastic Leukemia-Lymphoma
/ mortality
Retrospective Studies
Survival Rate
/ trends
Survivorship
United States
/ epidemiology
Long-term follow up
Paediatric cancer
Survivorship
Survivorship care plan
Treatment summary
Journal
BMC pediatrics
ISSN: 1471-2431
Titre abrégé: BMC Pediatr
Pays: England
ID NLM: 100967804
Informations de publication
Date de publication:
13 04 2019
13 04 2019
Historique:
received:
23
09
2018
accepted:
19
03
2019
entrez:
14
4
2019
pubmed:
14
4
2019
medline:
12
5
2020
Statut:
epublish
Résumé
As survivorship care plan (SCP) use among childhood cancer survivors and their families has not been extensively researched, we report on their experiences with receiving an SCP after the completion of therapy. Eligible patients had acute lymphoblastic leukemia, completed therapy, and had no evidence of disease at enrollment. Patients aged 7 or older (N = 13) and at least one parent (N = 23 for 20 total patients) were surveyed and completed assessments at enrollment (Time 1, T1), SCP delivery (Time 2, T2), and follow-up (Time 3, T3) (retention 90.9%). Surveys assessed the delivery process and SCP format. McNemar tests were used to assess change from T2-T3. Satisfaction with the SCP was generally high among parents. At T1 the majority of parents (69.6%) thought the SCP should be delivered after treatment but by T3 most preferred the plan to be delivered before the end of treatment (60.9%). While 95.7% of parents intended to share their child's SCP with another provider, family, or school at T2, only 60.9% had done so by T3 (P < 0.01). At both T2 and T3, 100% of parents agreed that the SCP would help make decisions about their child's future health care. Most patients at T3 (83.3%) felt they had learned something new from their SCP. Pediatric oncology patients and families feel SCPs are useful and will help them make decisions about health care in the future.
Sections du résumé
BACKGROUND
As survivorship care plan (SCP) use among childhood cancer survivors and their families has not been extensively researched, we report on their experiences with receiving an SCP after the completion of therapy.
METHODS
Eligible patients had acute lymphoblastic leukemia, completed therapy, and had no evidence of disease at enrollment. Patients aged 7 or older (N = 13) and at least one parent (N = 23 for 20 total patients) were surveyed and completed assessments at enrollment (Time 1, T1), SCP delivery (Time 2, T2), and follow-up (Time 3, T3) (retention 90.9%). Surveys assessed the delivery process and SCP format. McNemar tests were used to assess change from T2-T3.
RESULTS
Satisfaction with the SCP was generally high among parents. At T1 the majority of parents (69.6%) thought the SCP should be delivered after treatment but by T3 most preferred the plan to be delivered before the end of treatment (60.9%). While 95.7% of parents intended to share their child's SCP with another provider, family, or school at T2, only 60.9% had done so by T3 (P < 0.01). At both T2 and T3, 100% of parents agreed that the SCP would help make decisions about their child's future health care. Most patients at T3 (83.3%) felt they had learned something new from their SCP.
CONCLUSIONS
Pediatric oncology patients and families feel SCPs are useful and will help them make decisions about health care in the future.
Identifiants
pubmed: 30979365
doi: 10.1186/s12887-019-1464-0
pii: 10.1186/s12887-019-1464-0
pmc: PMC6461822
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
111Subventions
Organisme : NCATS NIH HHS
ID : UL1 TR002538
Pays : United States
Organisme : NCI NIH HHS
ID : K07 CA196985
Pays : United States
Organisme : NCI NIH HHS
ID : P30 CA042014
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR000105
Pays : United States
Organisme : NCRR NIH HHS
ID : UL1 RR025764
Pays : United States
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