Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

2023

03/2023

1573-2649

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals.

METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined.

RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found.

CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

10.1007/s11136-023-03392-3

Qual Life Res

36952075

Sociodemographics, Health Competence, and Transition Readiness Among Adolescent/Young Adult Cancer Survivors.

2022

2022 Apr 28

1465-735X

<p><strong>OBJECTIVE: </strong>Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer.</p>

<p><strong>METHODS: </strong>A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used.</p>

<p><strong>RESULTS: </strong>Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals.</p>

<p><strong>CONCLUSION: </strong>Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance.</p>

10.1093/jpepsy/jsac039

J Pediatr Psychol

35482609

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

2017

983-994

2017 Oct 01

1465-735X

<p><strong>Objective: </strong>The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods.</p>

<p><strong>Methods: </strong>Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART).</p>

<p><strong>Results: </strong>Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version.</p>

<p><strong>Conclusions: </strong>TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.</p>

10.1093/jpepsy/jsx095

J Pediatr Psychol

29046041

Initial Validation of the Sleep Disturbances in Pediatric Cancer Model.

2016

2016 Mar 18

1465-735X

<p>OBJECTIVE : The current study evaluates content validity of the Sleep Disturbance in Pediatric Cancer (SDPC) model using qualitative and quantitative stakeholder input.  METHODS : Parents of children (aged: 3-12 years) with acute lymphoblastic leukemia (n = 20) and medical providers (n = 6) participated in semi-structured interviews about child sleep during cancer treatment. They also rated SDPC model component importance on a 0-4 scale and selected the most relevant sleep-related intervention targets.  RESULTS : Qualitatively, parents and providers endorsed that changes in the child's psychosocial, environmental, and biological processes affect sleep. Stakeholders rated most model components (parent: 32 of 40; provider: 39 of 41) as important (&gt;2) to child sleep. Parents were most interested in interventions targeting difficulty falling asleep and providers selected irregular sleep habits/scheduling, though groups did not differ significantly. CONCLUSIONS : Stakeholders supported SDPC content validity. The model will inform subsequent measure and intervention development focusing on biological and behavioral factors most salient to sleep disturbances in pediatric cancer.</p>

10.1093/jpepsy/jsw008

J Pediatr Psychol

26994058