First name
Barbara
Last name
Jones

Title

Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology.

Year of Publication

2015

Number of Pages

S531-601

Date Published

2015 Dec

ISSN Number

1545-5017

Abstract

<p>Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.</p>

DOI

10.1002/pbc.25783

Alternate Title

Pediatr Blood Cancer

PMID

26700918

Title

Research Priorities in Pediatric Palliative Care.

Year of Publication

2015

Number of Pages

467-70.e3

Date Published

08/2015

ISSN Number

1097-6833

Abstract

<p><strong>OBJECTIVE: </strong>To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda.</p>

<p><strong>STUDY DESIGN: </strong>A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus.</p>

<p><strong>RESULTS: </strong>A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education.</p>

<p><strong>CONCLUSIONS: </strong>This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.</p>

DOI

10.1016/j.jpeds.2015.05.002

Alternate Title

J. Pediatr.

PMID

26028284

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