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

Psychosocial Correlates and Consequences of Adolescents' Self-Generated Academic Goals and Appraisals.

2020

2020 Nov 07

1532-7795

<p>The current study examined whether characteristics of adolescents (i.e., externalizing problems) and their environments (i.e., social support, adverse childhood experiences) relate to academic goal setting, appraisals, and outcomes. Adolescents (n&nbsp;=&nbsp;99; 87% Black/African American) 13-16&nbsp;years old completed baseline interviews, and 80% also completed follow-up interviews. Adolescents with more externalizing problems set fewer academic goals, and youth with social networks characterized by greater support (and less strain) appraised their academic goals as more supported and achievable. Adolescents' appraisals of their academic goals, but not how many academic goals they had, predicted grades at follow-up. Increasing social support (and reducing social strain) may foster adolescents' positive appraisals of their academic goals, which may promote academic achievement.</p>

10.1111/jora.12593

J Res Adolesc

33159837

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

Associates of Engagement in Adult-Oriented Follow-Up Care for Childhood Cancer Survivors.

2017

147-153

2017 Feb

1879-1972

<p><strong>PURPOSE: </strong>Understanding how to predict appropriate uptake of adult-oriented medical care is important for adult patients with pediatric-onset chronic health conditions with continued health vulnerability. We examined associates of engagement in adult survivors of childhood cancer following transfer to adult-oriented care.</p>

<p><strong>METHODS: </strong>Adult survivors of childhood cancer (N&nbsp;= 80), within 1-5&nbsp;years post transfer from pediatric to adult-oriented follow-up care, completed assessments of engagement with recommended adult-oriented follow-up care and psychosocial and transition readiness measures. Measures were validated with adolescent and young adults and/or intended to measure readiness to transition to adult care.</p>

<p><strong>RESULTS: </strong>Earlier age at diagnosis, parental involvement in health care decision-making, higher motivation, and increased comfort speaking to providers about health concerns were significantly associated with attendance at adult-oriented follow-up care visits.</p>

<p><strong>CONCLUSIONS: </strong>Associates of engagement in adult care are complex, representing social-ecological variables. Current measures of transition readiness or adolescent and young adult health-related measures may not adequately capture the associates of engagement in care or identify targets of intervention to promote successful transfer of care. Identifying patients at risk for loss to follow-up will be useful to design interventions for young adult survivors of childhood cancer and other young adults with pediatric-onset chronic conditions who require ongoing adult-oriented care.</p>

10.1016/j.jadohealth.2016.08.018

J Adolesc Health

28270337

What a Pain: The Impact of Physical Symptoms and Health Management on Pursuit of Personal Goals Among Adolescents with Cancer.

2016

2016 Oct 28

2156-535X

<p><strong>PURPOSE: </strong>This study examined health-related hindrance (HRH) of personal goals among adolescents receiving treatment for cancer and healthy peers.</p>

<p><strong>METHODS: </strong>Adolescents and parents completed measures of demographics and psychosocial variables. Adolescents reported on their HRH, measured by ratings of the impact of pain, fatigue, other physical symptoms, and doing things to manage their health on self-identified personal goals. Disease-related information was abstracted from patient charts.</p>

<p><strong>RESULTS: </strong>Adolescents with cancer experienced significantly more HRH than healthy peers, and their HRH was significantly associated with poorer health-related quality of life (p &lt; 0.001), negative affect (p = 0.03), and depressive symptoms (p = 0.03). Risk and resilience factors associated with HRH for those with cancer included pain (current and past month severity, frequency, and pain-related quality of life), fatigue, nausea, cognitive problems, worse parent-reported family functioning, and female gender. When testing these significant associates in a regression model predicting HRH among adolescents with cancer, those with more severe pain (p &lt; 0.001) and worse parent-reported family functioning (p = 0.01) were significantly associated with HRH; fatigue was marginally (p = 0.09) significant.</p>

<p><strong>CONCLUSIONS: </strong>Results suggest that HRH is a significant problem for adolescents with cancer, particularly those who are experiencing pain. Addressing pain and other symptom management, enhancing family functioning, and helping adolescents adjust their goals or enhance support for goal pursuit may reduce HRH among adolescents with cancer. This may improve psychosocial well-being, address adolescent unmet needs, and ultimately help adolescents with cancer maintain normal developmental trajectories.</p>

10.1089/jayao.2016.0031

J Adolesc Young Adult Oncol

27792462

Medical and psychosocial associates of nonadherence in adolescents with cancer.

2015

103-13

2015 Mar-Apr

1532-8457

<p>The current study examined adherence to medication regimens among adolescents with cancer by applying the Pediatric Self-Management Model. Adolescents and their parents reported on adherence to medication, reasons for nonadherence, and patient-, family-, and community-level psychosocial variables. Adolescent- and parent-reported adherence were significantly correlated, with about half of the sample reporting perfect adherence. The majority reported "just forgot" as the most common reason for missed medication. Patient-, family-, and community-level variables were examined as predictors of adherence. With regard to individual factors, adolescents who endorsed perfect adherence reported a greater proportion of future-orientated goals and spent fewer days in outpatient clinic visits. For family factors, adolescents who endorsed perfect adherence reported greater social support from their family and were more likely to have a second caregiver who they perceived as overprotective. The community-level variable (social support from friends) tested did not emerge as a predictor of adherence. The results of this study provide direction for intervention efforts to target adolescent goals and family support in order to increase adolescent adherence to cancer treatment regimens.</p>

10.1177/1043454214553707

J Pediatr Oncol Nurs

25366574

Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care.

2016

342-50

2016 Apr

1932-2267

<p><strong>PURPOSE: </strong>Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care.</p>

<p><strong>METHODS: </strong>YAS transferred from pediatric survivorship care in the prior 1-5&nbsp;years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year.</p>

<p><strong>RESULTS: </strong>Eighty YAS (M age = 27.7&nbsp;years, M time since diagnosis = 10.4&nbsp;years) participated. Just over half of YAS surveyed (n = 44, 55&nbsp;%) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n = 16, 44&nbsp;%) and primary care providers (n = 22, 50&nbsp;%) or utilizing a shared care model (n = 6, 14&nbsp;%). About a third of YAS endorsed seeing subspecialists (n = 29, 36&nbsp;%) or using other support services (n = 22, 27&nbsp;%). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable.</p>

<p><strong>CONCLUSIONS: </strong>YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters.</p>

<p><strong>IMPLICATIONS FOR CANCER SURVIVORS: </strong>Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.</p>

10.1007/s11764-015-0480-9

J Cancer Surviv

26303367

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

2015

577-83

2015 Nov

1536-3678

<p>The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients' quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.</p>

10.1097/MPH.0000000000000427

J. Pediatr. Hematol. Oncol.

26492583

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

2014

2083-91

2014 Nov

1536-4844

<p><strong>BACKGROUND: </strong>For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition.</p>

<p><strong>METHODS: </strong>We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes.</p>

<p><strong>RESULTS: </strong>Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes.</p>

<p><strong>CONCLUSIONS: </strong>IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.</p>

10.1097/MIB.0000000000000136

Inflamm. Bowel Dis.

25137417