Health System Research Priorities for Children and Youth With Special Health Care Needs

被引：61

作者：

Coller, Ryan J. ^{[1
]}

Berry, Jay G. ^{[2
,3
]}

Kuo, Dennis Z. ^{[4
]}

Kuhlthau, Karen ^{[5
,6
]}

Chung, Paul J. ^{[7
,8
,9
,10
]}

Perrin, James M. ^{[11
]}

Hoover, Clarissa G. ^{[12
]}

Warner, Gemma ^{[1
]}

Shelton, Charlene ^{[13
]}

Thompson, Lindsey R. ^{[14
]}

Garrity, Brigid ^{[2
,3
]}

Stille, Christopher J. ^{[13
]}

机构：

[1] Univ Wisconsin, Sch Med & Publ Hlth, Dept Pediat, Madison, WI USA

[2] Harvard Univ, Harvard Med Sch, Div Gen Pediat, Boston, MA 02115 USA

[3] Boston Childrens Hosp, Boston, MA USA

[4] Univ Buffalo, Jacobs Sch Med & Biomed Sci, Dept Pediat, Buffalo, NY USA

[5] Harvard Univ, Harvard Med Sch, Dept Pediat, Boston, MA 02115 USA

[6] Massachusetts Gen Hosp, Div Gen Acad Pediat, Boston, MA 02114 USA

[7] Kaiser Permanente, Dept Hlth Syst Sci, Sch Med, Los Angeles, CA USA

[8] Univ Calif Los Angeles, Dept Pediat, Los Angeles, CA 90024 USA

[9] Univ Calif Los Angeles, Dept Hlth Policy & Management, Los Angeles, CA USA

[10] RAND Corp, RAND Hlth, Los Angeles, CA USA

[11] MassGen Hosp Children, Boston, MA USA

[12] Family Voices, Albuquerque, NM USA

[13] Univ Colorado, Sch Med, Dept Pediat, Aurora, CO USA

[14] Univ Calif Los Angeles, David Geffen Sch Med, Mattel Childrens Hosp, Childrens Discovery & Innovat Inst,Dept Pediat, Los Angeles, CA 90095 USA

来源：

PEDIATRICS | 2020年 / 145卷 / 03期

关键词：

MEDICAL COMPLEXITY; SERVICES; RESILIENCE; DISABILITY; CAREGIVERS; OUTCOMES; ILLNESS; IMPACT; BIRTH; RISK;

D O I：

10.1542/peds.2019-0673

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

OBJECTIVES: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixedmethods approach. METHODS: Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of >= 7 in all domains. RESULTS: The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized. CONCLUSIONS: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.

引用

页数：12

共 49 条

[11] Linking Caregiver Strain to Diabetes Illness Management and Health Outcomes in a Sample of Adolescents in Chronically Poor Metabolic Control [J].

Carcone, April Idalski ;

Ellis, Deborah A. ;

Naar-King, Sylvie .

JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS, 2012, 33 (04) :343-351

[12] Quality Measures for Primary Care of Complex Pediatric Patients [J].

Chen, Alex Y. ;

Schrager, Sheree M. ;

Mangione-Smith, Rita .

PEDIATRICS, 2012, 129 (03) :433-445

[13]

Child and Adolescent Health Measurement Initiative, 2016, NAT SURV CHILDR HLTH

[14] Association Between the Birth of an Infant With Major Congenital Anomalies and Subsequent Risk of Mortality in Their Mothers [J].

Cohen, Eyal ;

Horvath-Puho, Erzsebet ;

Ray, Joel G. ;

Pedersen, Lars ;

Adler, Nancy ;

Ording, Anne Gulbech ;

Wise, Paul H. ;

Milstein, Arnold ;

Sorensen, Henrik Toft .

JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2016, 316 (23) :2515-2524

[15] Well-Child Care Clinical Practice Redesign for Serving Low-Income Children [J].

Coker, Tumaini R. ;

Moreno, Candice ;

Shekelle, Paul G. ;

Schuster, Mark A. ;

Chung, Paul J. .

PEDIATRICS, 2014, 134 (01) :E229-E239

[16] Strategies to Reduce Hospitalizations of Children With Medical Complexity Through Complex Care: Expert Perspectives [J].

Coller, Ryan J. ;

Nelson, Bergen B. ;

Klitzner, Thomas S. ;

Saenz, Adrianna A. ;

Shekelle, Paul G. ;

Lerner, Carlos F. ;

Chung, Paul J. .

ACADEMIC PEDIATRICS, 2017, 17 (04) :381-388

[17] A critical evaluation of the effectiveness of interventions for improving the well-being of caregivers of children with cerebral palsy: a systematic review protocol [J].

Dambi, Jermaine M. ;

Jelsma, Jennifer ;

Mlambo, Tecla ;

Chiwaridzo, Matthew ;

Tadyanemhandu, Cathrine ;

Chikwanha, Mildred T. ;

Corten, Lieselotte .

SYSTEMATIC REVIEWS, 2016, 5

[18] Children with medical complexity: a scoping review of interventions to support caregiver stress [J].

Edelstein, H. ;

Schippke, J. ;

Sheffe, S. ;

Kingsnorth, S. .

CHILD CARE HEALTH AND DEVELOPMENT, 2017, 43 (03) :323-333

[19] Refining Our Understanding of Value-Based Insurance Design and High Cost Sharing on Children [J].

Ellis, Randall P. ;

Bachman, Sara S. ;

Tan, Hui Ren .

PEDIATRICS, 2017, 139 :S136-S144

[20] Accelerated telomere shortening in response to life stress [J].

Epel, ES ;

Blackburn, EH ;

Lin, J ;

Dhabhar, FS ;

Adler, NE ;

Morrow, JD ;

Cawthon, RM .

PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA, 2004, 101 (49) :17312-17315

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