Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregiv...

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Publicado en:Journal of Adolescent & Young Adult Oncology Vol. 13; no. 5; pp. 760 - 768
Autores principales: Salsman, John M., Nightingale, Chandylen L., Canzona, Mollie R., Howard, Dianna S., Tucker-Seeley, Reginald D., Wiseman, Kimberly D., Victorson, David E., Robles, Joanna M., Roth, Michael, Smith, Regina, Reeve, Bryce B., Danhauer, Suzanne C.
Formato: research tables/charts Journal Article
Publicado: Mary Ann Liebert, Inc. Oct2024
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Oct2024
      vid: 13
      iid: 5
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      pub: Mary Ann Liebert, Inc.
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        10.1089/jayao.2024.0041
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        atl: Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.
      aug:
        au:
          Salsman, John M.
          Nightingale, Chandylen L.
          Canzona, Mollie R.
          Howard, Dianna S.
          Tucker-Seeley, Reginald D.
          Wiseman, Kimberly D.
          Victorson, David E.
          Robles, Joanna M.
          Roth, Michael
          Smith, Regina
          Reeve, Bryce B.
          Danhauer, Suzanne C.
        affil: Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA.
      sug:
        subj:
          Cancer Patients Psychosocial Factors
          Cancer Patients Psychosocial Factors
          Caregivers Psychosocial Factors
          Neoplasms Economics
          Health Care Costs
          Financial Stress Evaluation
          Instrument Construction
          Instrument Validation
          Psychometrics Evaluation
          National Institutes of Health (U.S.)
          Patient-Reported Outcomes
          Human
          Funding Source
          United States
          Validation Studies
          Interviews
          Financial Stress Risk Factors
          Risk Assessment
          Social Determinants of Health
          Adolescence
          Adult
          Instrument Adaptation
          Purposive Sample
          Descriptive Statistics
          Content Validity
          Qualitative Studies
          Questionnaires
          Adolescent: 13-18 years
          Adult: 19-44 years
      ab: Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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