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Background: Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints., Objectives: To explore parents' perspectives on reporting about child symptoms and quality of life (QoL) concurrently with their child in the context of pediatric advanced cancer., Methods: This qualitative study was embedded in the PediQUEST Response Study, a randomized controlled trial of timely palliative care integration in children with advanced cancer. Over 18 weeks, study dyads (children ≥5 years old and one parent) completed weekly e-PROs assessing symptoms and QoL. Using a grounded theory approach, we ran a secondary analysis of end-of-study semi-structured parent interviews to examine their views on concurrent reporting of symptoms., Results: Out of 110 randomized dyads included in this analysis, 77 parents completed an exit interview. Most were White non-Hispanic mothers. Parent reflections on concurrent reporting of child symptoms and QoL are summarized in the following themes: symptom experience is subjective, parent and child viewpoints are unique, parents ask fewer questions as they adapt to child treatment, and children may hesitate to share symptoms. To better grasp their child's experience, parents developed proactive communication strategies., Conclusion: Interviewed parents acknowledged that parent report and child self-report are distinct and complementary. Their perspectives provide guidance to clinicians and researchers about the implementation and interpretation of concurrent outcomes measurement in pediatric advanced cancer care., Clinicaltrials: gov NCT03408314., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions., Methods: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire)., Results: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively)., Conclusions: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes., (© 2024 American Cancer Society.)

Purpose: Advance care planning (ACP) discussions can help adolescents and young adults (AYAs) communicate their preferences to their caregivers and clinical team, yet little is known about willingness to hold conversations, content, and evolution of care preferences. We aimed to assess change in care preferences and reasons for such changes over time and examine the reasons for engaging or not engaging in ACP discussions and content of these discussions among AYAs and their caregivers., Methods: We conducted a pilot randomized controlled trial of a novel video-based ACP tool among AYA patients aged 18-39 with advanced cancer and their caregivers. Participants were asked their care preferences at baseline, after viewing the video or hearing verbal description (post questionnaire), and again 3 months later. Three-month phone calls also queried if any ACP conversations occurred since the initial study visit. Study team notes from these phone calls were evaluated using content analysis., Results: Forty-five AYAs and 40 caregivers completed the 3-month follow-up. Nearly half of AYAs and caregivers changed their care preference from post questionnaire to 3-month follow-up. Increased reflection and learning on the topic (n = 45) prompted preference change, with participants often noting the nuanced and context-specific nature of these decisions (n = 20). Most AYAs (60%) and caregivers (65%) engaged in ACP conversation(s), often with a family member. Disease-related factors (n = 8), study participation (n = 8), and a desire for shared understanding (n = 6) were common reasons for initiating discussions. Barriers included disease status (n = 14) and timing (n = 12). ACP discussions focused on both specific wishes for treatment (n = 26) and general conversations about goals and values (n = 18)., Conclusion: AYAs and caregivers acknowledged the complexity of ACP decisions, identifying obstacles and aids for these discussions. Clinicians should support a personalized approach to ACP that captures these nuances, promoting ACP as an iterative, longitudinal, and collaborative process., Trial Registration: This trial was registered 10/31/2019 with ClinicalTrials.gov (Identifier: NCT0414907)., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background and Objectives: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret., Methods: We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models., Results: Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories., Conclusions: Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret., (© 2023 Wiley Periodicals LLC.)

Context: Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage., Objectives: This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL., Methods: We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here., Results: Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion., Conclusion: Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Adolescents and young adults (AYAs) with advanced cancer often receive intensive end-of-life care, yet it is unclear if this is goal-concordant. Advance care planning (ACP) video tools may promote identification and communication of AYA preferences., Patients and Methods: We conducted a dual-site, 1:1 pilot randomized controlled trial of a novel video-based ACP tool in 50 dyads of AYA patients aged 18 to 39 years with advanced cancer and their caregivers. ACP readiness and knowledge, preferences for future care, and decisional conflict were obtained pre, post, and 3 months after the intervention and compared between groups., Results: Of the 50 AYA/caregiver dyads enrolled, 25 (50%) were randomized to the intervention. Participants primarily identified as female, white, and non-Hispanic. Most AYAs (76%) and caregivers (86%) identified their overall goal as life-prolonging preintervention; less identified this goal postintervention (42% AYAs; 52% caregivers). There was no significant difference in change in proportion of AYAs or caregivers choosing life-prolonging care, CPR, or ventilation between arms postintervention or at 3 months. The change in participant scores for ACP knowledge (AYAs and caregivers) and ACP readiness (AYAs) from preintervention to postintervention was greater in the video arm compared with the control arm; the difference in caregivers' scores for decisional conflict from preintervention to postintervention in the video arm was statistically significant (15 vs 7; P=.005). Feedback from the video participants was overwhelmingly positive; of the 45 intervention participants who provided video feedback, 43 (96%) found the video helpful, 40 (89%) were comfortable viewing the video, and 42 (93%) indicated they would recommend the video to other patients facing similar decisions., Conclusions: Most AYAs with advanced cancer and their caregivers preferred life-prolonging care in advanced illness, with fewer preferring this type of care postintervention. A brief video-based ACP tool was well-liked by participants and improved caregiver decisional certainty. Videos may be a useful tool to inform AYAs and caregivers about end-of-life care options and promote ACP discussions.

Context: Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement., Objectives: We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement., Methods: We analyzed responses from a cross-sectional, dual site study of parents six to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents' responses., Results: A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to five categories: treatments, including those pursued and/or not pursued (n = 57), decision-making processes (n = 35), relationships with their child and care team (n = 26), child suffering (n = 10), and end-of-life characteristics (n = 6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret., Conclusion: Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes., Methods: Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning., Results: One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores., Conclusion: Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.

Purpose: Dynamic limb valgus, particularly high knee abduction moments, is a known risk factor for anterior cruciate ligament (ACL) injury and may result from poor static anatomic limb alignment, faulty biomechanics, or a combination of both. The purpose of this study was to assess the influence of static lower extremity anatomic alignment and dynamic kinematic/kinetic measures on knee abduction moments during sidestep cutting in adolescent athletes with recent ACL reconstruction., Methods: This retrospective study included 50 adolescents with recent unilateral ACL reconstruction (18/50 female, mean age = 15.8 yr, 7.6 months postsurgery). Frontal plane hip-to-ankle imaging was used to measure mechanical axis deviation and tibial-femoral angle. Three-dimensional motion capture provided lower extremity kinematics and kinetics during quiet standing and during the loading phase (initial contact to peak knee flexion) of an anticipated 45° sidestep cut. Imaging, static motion capture, and dynamic motion capture measures were investigated as potential predictors of average dynamic knee abduction moment using correlation and backward stepwise linear regression., Results: Dynamic knee abduction moment was best predicted by a combination of younger age and dynamic measures: trunk lean toward the planting limb, knee abduction and external rotation, and ankle inversion. Although static measures were correlated with dynamic knee abduction moment in univariate analysis, no static/anatomic variables entered the model once the dynamic measures were included., Conclusion: Knee abduction moments during sidestep cutting were related to dynamic factors reflecting frontal and transverse plane motion. Static (anatomic) lower limb alignment did not influence knee abduction moments once these dynamic factors were considered. Knee abduction moments and ACL injury risk are therefore not dictated by anatomic alignment and can be altered through neuromuscular/biomechanical training., (Copyright © 2021 by the American College of Sports Medicine.)