Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer

Authors

Cynthia J. Bell, Author Affiliations: Department of Cancer Care Services, Corewell Health, Lemmen-Holton Cancer Pavilion, Grand Rapids (Dr Bell); and Department of Pediatrics, Palliative Care, C. S. Mott Children's Hospital, Ann Arbor (Dr Spruit), Michigan; Department of Family and Community Health, School of Nursing, University of Pennsylvania, Philadelphia (Dr Deatrick); Department of Pediatric Palliative Care, Children's Nebraska, University of Nebraska Medical Center, Omaha (Dr Weaver); Department of Pediatrics, Hematology/Oncology, University of Iowa (Dr Dickens); Department of Nursing Science, Professional Practice & Quality, Children's National Hospital, and Department of Pediatrics, George Washington University, Washington, District of Columbia (Dr Hinds); and Department of Nursing Research and Evidence Based Practice, Children's Wisconsin, Milwaukee, and University of Illinois at Chicago (Dr Kavanaugh).
Jessica L. Spruit
Janet A. Deatrick
Meaghann S. Weaver
David S. Dickens
Pamela S. Hinds
Karen L. Kavanaugh

Document Type

Journal Article

Publication Date

6-4-2024

Journal

Cancer nursing

DOI

10.1097/NCC.0000000000001343

Abstract

BACKGROUND: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians. OBJECTIVE: This study describes the development and validation of an instrument that measures AYA readiness to engage in PCEOL clinical conversations. METHODS: A Ready-to-Talk Measure (R-T-M) was developed, guided by the revised conceptual model of readiness across 3 domains (awareness, acceptance, and willingness). Content experts evaluated validity, and 13 AYAs with advanced cancer participated in cognitive interviews. Acceptability (item applicability, clarity, interpretation, sensitivity, missingness) and experiences (benefit, burden) were analyzed. RESULTS: The scale content validity index was ≥0.90 for each domain. Forty-two of the 55 R-T-M items were acceptable without any change. Three items were deleted. Ten items were modified, and 3 were added. Adolescents and young adults wanted more items about friends/siblings and about AYA unique qualities for clinicians to know them better. Adolescents and young adults acknowledged benefit through talking about difficult, relevant topics. CONCLUSION: Ready-to-Talk Measure validity was strengthened by deleting or modifying unclear or misinterpreted items and by adding items. Next steps include psychometric analysis to determine reliability/dimensionality and stakeholder input to make the R-T-M a clinically useful tool. IMPLICATIONS FOR PRACTICE: Ready-to-Talk Measure assessment of readiness to engage in PCEOL conversations while identifying unique preferences of AYAs holds promise for facilitating ongoing discussions.

APA Citation

Bell, Cynthia J.; Spruit, Jessica L.; Deatrick, Janet A.; Weaver, Meaghann S.; Dickens, David S.; Hinds, Pamela S.; and Kavanaugh, Karen L., "Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer" (2024). GW Authored Works. Paper 5156.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/5156

Department

Pediatrics