First name
Wendy
Middle name
L
Last name
Hobbie

Title

Late effects in survivors of high-risk neuroblastoma following stem cell transplant with and without total body irradiation.

Year of Publication

2021

Number of Pages

e29537

Date Published

2021 Dec 31

ISSN Number

1545-5017

Abstract

<p><strong>BACKGROUND: </strong>Neuroblastoma is the most common extracranial solid tumor in children. Those with high-risk disease are treated with multimodal therapy, including high-dose chemotherapy, stem cell transplant, radiation, and immunotherapy that have led to multiple long-term complications in survivors. In the late 1990s, consolidation therapy involved myeloablative conditioning including total body irradiation (TBI) with autologous stem cell rescue. Recognizing the significant long-term toxicities of exposure to TBI, more contemporary treatment protocols have removed this from conditioning regimens. This study examines an expanded cohort of 48 high-risk neuroblastoma patients to identify differences in the late effect profiles for those treated with TBI and those treated without TBI.</p>

<p><strong>PROCEDURE: </strong>Data on the study cohort were collected from clinic charts, provider documentation in the electronic medical record of visits to survivorship clinic, including all subspecialists, and ancillary reports of laboratory and diagnostic tests done as part of risk-based screening at each visit.</p>

<p><strong>RESULTS: </strong>All 48 survivors of BMT for high-risk neuroblastoma had numerous late effects of therapy, with 73% having between five and 10 late effects. TBI impacted some late effects significantly, including growth hormone deficiency (GHD), bone outcomes, and cataracts.</p>

<p><strong>CONCLUSION: </strong>Although high-risk neuroblastoma survivors treated with TBI have significant late effects, those treated without TBI also continue to have significant morbidity related to high-dose chemotherapy and local radiation. A multidisciplinary care team assists in providing comprehensive care to those survivors who are at highest risk for significant late effects.</p>

DOI

10.1002/pbc.29537

Alternate Title

Pediatr Blood Cancer

PMID

34971017

Title

Feasibility and Acceptability of a Pilot Tailored Text Messaging Intervention for Adolescents and Young Adults Completing Cancer Treatment.

Year of Publication

2019

Date Published

2019 Nov 11

ISSN Number

1099-1611

Abstract

<p><strong>PURPOSE: </strong>Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors.</p>

<p><strong>METHODS: </strong>Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n=31) or an AYA survivor handbook (n=30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received 1-2 health-related text messages per day over 16 weeks.</p>

<p><strong>RESULTS: </strong>THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability.</p>

<p><strong>CONCLUSIONS: </strong>Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.</p>

DOI

10.1002/pon.5287

Alternate Title

Psychooncology

PMID

31713265

Title

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

Year of Publication

2017

Number of Pages

983-994

Date Published

2017 Oct 01

ISSN Number

1465-735X

Abstract

<p><strong>Objective: </strong>The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods.</p>

<p><strong>Methods: </strong>Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART).</p>

<p><strong>Results: </strong>Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version.</p>

<p><strong>Conclusions: </strong>TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.</p>

DOI

10.1093/jpepsy/jsx095

Alternate Title

J Pediatr Psychol

PMID

29046041

Title

Associates of Engagement in Adult-Oriented Follow-Up Care for Childhood Cancer Survivors.

Year of Publication

2017

Number of Pages

147-153

Date Published

2017 Feb

ISSN Number

1879-1972

Abstract

<p><strong>PURPOSE: </strong>Understanding how to predict appropriate uptake of adult-oriented medical care is important for adult patients with pediatric-onset chronic health conditions with continued health vulnerability. We examined associates of engagement in adult survivors of childhood cancer following transfer to adult-oriented care.</p>

<p><strong>METHODS: </strong>Adult survivors of childhood cancer (N&nbsp;= 80), within 1-5&nbsp;years post transfer from pediatric to adult-oriented follow-up care, completed assessments of engagement with recommended adult-oriented follow-up care and psychosocial and transition readiness measures. Measures were validated with adolescent and young adults and/or intended to measure readiness to transition to adult care.</p>

<p><strong>RESULTS: </strong>Earlier age at diagnosis, parental involvement in health care decision-making, higher motivation, and increased comfort speaking to providers about health concerns were significantly associated with attendance at adult-oriented follow-up care visits.</p>

<p><strong>CONCLUSIONS: </strong>Associates of engagement in adult care are complex, representing social-ecological variables. Current measures of transition readiness or adolescent and young adult health-related measures may not adequately capture the associates of engagement in care or identify targets of intervention to promote successful transfer of care. Identifying patients at risk for loss to follow-up will be useful to design interventions for young adult survivors of childhood cancer and other young adults with pediatric-onset chronic conditions who require ongoing adult-oriented care.</p>

DOI

10.1016/j.jadohealth.2016.08.018

Alternate Title

J Adolesc Health

PMID

28270337

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