Optimizing the measurement of health‐related quality of life in adolescents and young adults with cancer

Abstract

To date, the health‐related quality of life experiences of adolescents and young adults (AYA) with cancer have been inconsistently and incompletely captured by existing patient‐reported outcome (PRO) measures. The National Institutes of Health Patient‐Reported Outcomes Measurement Information System (PROMIS) represents the state of the art for measurement science of PROs and provides an optimal approach for addressing these measurement challenges and catalyzing future patient‐centered research in AYA oncology.

Measuring health‐related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient‐Reported Outcomes Measurement Information System®: Comparing adolescent, emerging adult, and young adult survivor perspectives

“…Additionally, existing HRQOL measures are limited in AYA survivors because they do not measure all important domains (e.g., body image) and are often validated in pediatric (<18 years) or adult (≥18 years) populations, but not both. Linking efforts suggest that pediatric and adult PROMIS measures are comparable, 32,33 but efforts are needed to improve these gaps 38 . The current study represents a starting point for recognizing the importance of HRQOL and developmental stage in AYA survivorship care and research.…”

A qualitative assessment of body image in adolescents and young adults (AYAs) with cancer

“…This study is a component of a larger project with aims toward expanding the use of PROMIS ® (Patient‐Reported Outcomes Measurement Information System) to provide reliable and valid assessment of HRQOL concerns for AYA cancer survivors including body image, fertility, and financial burden 6 . Body image is recognized as a critical psychosocial issue in the oncology setting with growing research addressing body image challenges for adult cancer survivors 7 .…”

The importance of a collaborative health‐related quality of life measurement strategy for adolescents and young adults with cancer

“…With great interest, we read Salsman et al's commentary highlighting the need for psychometrically robust measures that capture meaningful health-related quality of life (HRQOL) constructs for adolescents and young adults (AYAs) with cancer. 1 The authors describe the potential benefit of applying standards and methodology from the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) to the field of HRQOL measurement among AYAs.…”

“…For AYAs, the impact of a cancer diagnosis and treatment is often distinct from the impact on other age groups because of the unique and complex physical and psychosocial challenges of this developmental phase. 2 As outlined by Salsman et al, 1 the current research infrastructure for assessing AYA cancer-related HRQOL issues is inadequate because available instruments lack content validity (missing content: fertility, body image, financial, educational, and occupational issues). 3,4 There is an urgent need to develop or modify existing AYA assessment tools.…”

“…The advantage of using a cancer-specific measure such as the EORTC QLQ-C30 in combination with specific modules is that general population norm data across Europe and North America 6 and minimal clinically important difference data are available to facilitate interpretation and serve as a benchmark to assess the effectiveness of an intervention. 5 As stated by Salsman et al, 1 the heterogeneity of AYAs with cancer with respect to developmental and life stages, the high number of histological subtypes, and hence the broad (drug) treatment landscape with different modes of action and associated toxicities make it challenging to develop a single AYA-specific measure that meets all the needs of clinical practice, academia, and industry. The development and validation of outcome measures are time-consuming, and in the era of personalized medicine and with rapid advances in medicines and treatments, a more flexible HRQOL measurement strategy is required.…”