Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.

Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensi...

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Publicado en:Journal of Adolescent & Young Adult Oncology Vol. 14; no. 2; pp. 180 - 187
Autores principales: Canzona, Mollie Rose, Victorson, David E., Murphy, Karly M., Clayman, Marla L., Reeve, Bryce B., Patel, Bonnie, Strahley, Ashley E., McLean, Thomas W., Harry, Onengiya, Roth, Michael E., Smith, Regina V., Salsman, John M.
Formato: research tables/charts Journal Article
Publicado: Mary Ann Liebert, Inc. Apr2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Apr2025
      vid: 14
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      pub: Mary Ann Liebert, Inc.
      place: New Rochelle, New York
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        184236430
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        10.1089/jayao.2024.0042
        184236430
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        atl: Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.
      aug:
        au:
          Canzona, Mollie Rose
          Victorson, David E.
          Murphy, Karly M.
          Clayman, Marla L.
          Reeve, Bryce B.
          Patel, Bonnie
          Strahley, Ashley E.
          McLean, Thomas W.
          Harry, Onengiya
          Roth, Michael E.
          Smith, Regina V.
          Salsman, John M.
        affil: Communication Science, Wake Forest University, Winston-Salem, North Carolina, USA.
      sug:
        subj:
          Cancer Survivors In Adolescence
          Fertility In Adolescence
          Psychological Well-Being
          Cognition
          Conversation
          Self Report
          Human
          Funding Source
          Adolescence
          Adult
          Content Validity
          Fertility Preservation
          Reproductive Health
          Interviews
          Qualitative Studies
          Questionnaires
          Adolescent: 13-18 years
          Adult: 19-44 years
      ab: Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch–Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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