BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics.

PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19.

RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time.

CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics.

PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19.

RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time.

CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

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.

<p><strong>BACKGROUND: </strong>Perceptions and practices of parties in pediatric pain are critical in children's access to adequate acute pain management. The personal factors of the child and parents have been shown to be central to pediatric pain management by the Symptom Management Theory.</p>

<p><strong>AIM: </strong>To describe children and parents/guardians' perceptions (knowledge, attitudes and beliefs) and practices regarding pediatric acute pain management and explain the influence of socio-cultural and environmental factors on those perceptions and practices.</p>

<p><strong>METHODS: </strong>Descriptive cross-sectional survey using modified versions of the American Pain Society Patient Outcome Questionnaire-Revised among parents/guardians and children.</p>

<p><strong>RESULTS: </strong>A convenience sample of 275 parents/guardians and 42 children aged 8 to 13 years admitted between date November 2018 and February 2019 to two Botswana tertiary hospitals completed the surveys. Forty-seven percent (n = 129) of parents/guardians reported the child to be in moderate-severe pain, while 38% (n = 16) of children reported pain as moderate-severe at the time of the survey. The children mean scores for cm-APS-POQ-R were 113(33) while parents/guardian's guardians for m-APS-POQ-R were 123(26). The subscales except for the parents/'guardians' pain interference (p = .96) were statistically significant (p = .000), showing adequate knowledge, positive attitudes and high pain intensity for both parents/guardians and children.</p>

<p><strong>CONCLUSION: </strong>Parent/guardians and children reported a high incidence of acute pain, were content with pain management services, and showed adequate knowledge of pediatric pain and its management. The incongruence between the intensity of pain, satisfaction on the adequacy of pain management and knowledge and attitudes demonstrated in this study need further inquiry.</p>

<p><strong>BACKGROUND: </strong>There is very limited clinical and observational data on acute pain experienced by children in sub-Saharan Africa.</p>

<p><strong>AIMS: </strong>To report the prevalence and intensity of acute pain, pain management practices, and describe associations between acute pain outcomes, children's and parents or guardian's demographics in hospitalized children aged 2 months to 13 years in Botswana.</p>

<p><strong>DESIGN: </strong>A descriptive correlational prospective observational study using five repeated cross-sectional samples.</p>

<p><strong>SETTINGS: </strong>Two referral hospitals in Botswana.</p>

<p><strong>PARTICIPANTS: </strong>The sample size included 308 children and 226 parents or guardians. Data were collected between November 2018 and February 2019 from children, their parents or guardians (&lt;7 years child), and the health record for pain documentation and treatment.</p>

<p><strong>MEASURES: </strong>Pain was measured using Faces Pain Scale-Revised for children ≥7 years, revised Face, Legs, Activity, Cry, Consolability scale for children &lt;7 years and numeric rating scale for parents or guardians.</p>

<p><strong>RESULTS: </strong>There are 1,290 data points for children of which 1,000 were children &lt;7 years and 999 data points for parents or guardians of children &lt;7 years were used in analysis. Fifty percent of children &lt;7 years were in pain using the revised Face, Legs, Activity, Cry, Consolability scale, whereas parents indicated 46% to be in pain. The pain prevalence for children ≥7 years was estimated at 54%. Pain was documentated at a rate of 54 % on the health records. Acetaminophen was most common analgesic across all age groups. Univariate associations of child &lt;7 years pain intensity was statistically significant (p ≤ .05) for weight, diagnosis, residence, and parent relationship. Parents reported pain intensity was statistically significant (p ≤ .05) for child sex, weight, diagnosis, residence, surgery, parent or guardian age and education. Only age and surgery were significant for children ≥7 years.</p>

<p><strong>CONCLUSIONS: </strong>Acute pain prevalence and intensity among hospitalized children in Botswana is low.</p>

<p><strong>BACKGROUND: </strong>Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families.</p>

<p><strong>METHODS: </strong>We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4).</p>

<p><strong>RESULTS: </strong>Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home."</p>

<p><strong>CONCLUSIONS: </strong>The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.</p>

<p><strong>CONTEXT: </strong>Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.</p>

<p><strong>OBJECTIVE: </strong>To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.</p>

<p><strong>METHODS: </strong>Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.</p>

<p><strong>RESULTS: </strong>Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/Emotional Support for the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the Caregiver Supportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed.</p>

<p><strong>CONCLUSIONS: </strong>Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.</p>

<p>This mixed methods study sought to assess adolescent and young adult (AYA) adherence to three cancer treatment recommendations (medications, diet, physical activity), and determine the individual, family, and health system factors associated with suboptimal adherence. In Stage 1, 72 AYA-caregiver dyads completed a validated adherence interview and surveys about individual and family functioning. Matched providers ( = 34 who reported on 61 AYAs) completed global adherence ratings through survey. In Stage 2, a subset ( = 31) completed qualitative interviews. Medication adherence was higher ( = 94.8%) than diet ( = 73.9%) and physical activity ( = 55.4%), although ≥50% demonstrated "Imperfect Adherence" for each subtask. Univariately, AYAs who missed a medication had more depressive symptoms, worse health-related quality of life (HRQOL), and more medication barriers; their families had more financial stress, worse family functioning, and lower self-efficacy. The odds of adhering to medications were lower with worse HRQOL (odds ratio [OR] = 1.08; 95% confidence interval [CI], 1.02-1.15) and family functioning (OR = 0.18; 95% CI, 0.04-0.91). The odds of adhering to physical activity and diet were lower with worse family functioning (OR = 0.09; 95% CI, 0.01-0.91) and more barriers (OR = 0.24, CI: 0.10-0.61), respectively. Qualitative themes further supported multilevel influences on AYA adherence. Adherence challenges were identified across medications, diet, and physical activity. Multilevel contextual factors were associated with suboptimal adherence, including poorer HRQOL and family functioning. Findings support the need to improve clinical adherence assessment and develop contextually tailored interventions.</p>

<p><strong>PURPOSE: </strong>This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.</p>

<p><strong>METHODS: </strong>Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes.</p>

<p><strong>RESULTS: </strong>Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools.</p>

<p><strong>CONCLUSIONS: </strong>These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.</p>

<p><strong>IMPLICATIONS FOR CANCER SURVIVORS: </strong>Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.</p>

<p>Reasons for the relatively low rates of adolescent and young adults (AYA) enrollment in cancer clinical trials in the United States require further empirical examination. In addition to structural factors such as lack of access and insurance barriers, attitudes toward clinical trials may be important to consider. This study aimed to evaluate and validate the Pediatric Research Participation Questionnaire (PRPQ)-a measure of attitudes to clinical trials adapted for AYA (15-29) with cancer and their caregivers. One hundred twenty-four AYA and 94 caregivers completed the PRPQ-AYA and measures of clinical trial knowledge and developmental/emotional maturity. Factor analysis evaluated the PRPQ-AYA structure, interitem reliability was computed, and Pearson correlations examined associations of validation measures with factor scores and computed scores reflecting perceived barriers, perceived benefits, and decision balance. Confirmatory factor analysis did not confirm the prior PRPQ factor structure. Exploratory factor analysis suggested a new four-factor structure for: AYA (1) trust/mistrust, (2) barriers/costs, (3) support for participation, and (4) incentives; and caregivers (1) trust/access, (2) mistrust/costs, (3) support for participation, and (4) risks to AYA. Factor scores and barriers, benefits, and decision balance scores demonstrated acceptable interitem reliability and were significantly correlated with clinical trial knowledge and emotional maturity in the expected direction. PRPQ-AYA factor structure for AYA and caregivers varied and should be interpreted cautiously due to limited power. Simple solutions of perceived benefits, perceived barriers, and decision balance were reliable and valid and provide important information to address and engage AYA through the clinical trial informed consent process.</p>