"The place it puts us in emotionally and relationally with our child, it's damaging": understanding the real-world psychosocial needs of caregivers of childhood cancer survivors.

PURPOSE: Understanding the lived experiences of childhood cancer caregivers can guide the development of effective psychosocial models of care. We conducted this qualitative study to understand triggers that impact the mental health, quality of life, and mental health supportive care needs of caregivers. METHODS: A maximum variation sampling strategy was used to recruit study participants for semi-structured interviews. Using a grounded theory approach, transcripts were independently dual-coded using inductive thematic analysis. We conducted a secondary thematic analysis emphasizing the impact of pediatric oncology on caregiver mental health. RESULTS: Our findings highlight caregiver experiences connected to their child's appearance, quality of life, or change in behavior. Caregivers reported the need to transition between the role of nurturer and protector and simultaneously be part of the care team, which increased trauma for caregivers and their children. Caregivers noted that the hardest part of being a caregiver is witnessing, participating, and forcing the child to comply with cancer treatment. Caregivers were left wishing there had been more support for these situations. CONCLUSION: Our findings reveal real-world experiences that caregivers view as among the most stressful during their child's cancer journey. These events provide insight into the nuanced and most difficult experiences from the caregiver perspective in which emotional support services would be most useful. These insights will inform a future model for mental healthcare. IMPLICATIONS FOR CANCER SURVIVORS: Caregivers' treatment-related stress is associated with the quality of life of pediatric cancer patients. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines may positively impact the caregiver-child relationship long into survivorship.  Children's and their caregivers' treatment-related stress are indelibly connected to the quality of life concerns throughout the cancer journey. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines will positively impact the caregiver-child relationship long into survivorship.

Family perspectives on the transition from active treatment to survivorship for children with cancer.

BACKGROUND: Completing therapy for childhood cancer is an exciting milestone. However, this adjustment can be extremely stressful for patients and their families as they transition from cancer patient to survivor. A better understanding of the patient and family experience and their needs during this transition is crucial for developing guidelines and leveraging support for future patients and families. PROCEDURE: Participants were recruited from across the United States using a maximum variation sampling strategy. Families were eligible if they had a child diagnosed with cancer before age 15 and had completed treatment at least 1 year prior to their interview. Participants completed a 90-180-minute semi-structured interview either in person or virtually. Interviews focused on the experiences of getting a diagnosis, experiences with treatment, information seeking, impact of cancer on the family, social support, and transitions to survivorship. Inductive thematic analysis revealed a wide variety of themes. This paper examines the transition from active cancer therapy into survivorship. RESULTS: Identified primary themes included (i) feelings about transitioning off therapy; (ii) coping with lingering effects; and (iii) experiences of transitioning off therapy and survivorship care. Subthemes highlighted the need for more support for both patients and families during this transition. CONCLUSION: Patients and families desire more support during the transition off therapy. Suggestions included access to additional resources, earlier transition to receiving survivorship care, and more holistic survivorship care. Further research is needed to determine best models and feasibility of delivering this desired support to all patients and families.

Risk Factors and Trends for HPV-Associated Subsequent Malignant Neoplasms among Adolescent and Young Adult Cancer Survivors.

BACKGROUND: Subsequent malignant neoplasms (SMN; new cancers that arise after an original diagnosis) contribute to premature mortality among adolescent and young adult (AYA) cancer survivors. Because of the high population prevalence of human papillomavirus (HPV) infection, we identify demographic and clinical risk factors for HPV-associated SMNs (HPV-SMN) among AYA cancer survivors in the SEER-9 registries diagnosed from 1976 to 2015. METHODS: Outcomes included any HPV-SMN, oropharyngeal-SMN, and cervical-SMN. Follow-up started 2 months after their original diagnosis. Standardized incidence ratios (SIR) compared risk between AYA survivors and general population. Age-period-cohort (APC) models examined trends over time. Fine and Gray's models identified therapy effects controlling for cancer and demographic confounders. RESULTS: Of 374,408 survivors, 1,369 had an HPV-SMN, occurring on average 5 years after first cancer. Compared with the general population, AYA survivors had 70% increased risk for any HPV-SMN [95% confidence interval (CI), 1.61-1.79] and 117% for oropharyngeal-SMN (95% CI, 2.00-2.35); cervical-SMN risk was generally lower in survivors (SIR, 0.85; 95% CI, 0.76-0.95), but Hispanic AYA survivors had a 8.4 significant increase in cervical-SMN (SIR, 1.46; 95% CI, 1.01-2.06). AYAs first diagnosed with Kaposi sarcoma, leukemia, Hodgkin, and non-Hodgkin lymphoma had increased HPV-SMN risks compared with the general population. Oropharyngeal-SMN incidence declined over time in APC models. Chemotherapy and radiation were associated with any HPV-SMN among survivors with first HPV-related cancers, but not associated among survivors whose first cancers were not HPV-related. CONCLUSIONS: HPV-SMN in AYA survivors are driven by oropharyngeal cancers despite temporal declines in oropharyngeal-SMN. Hispanic survivors are at risk for cervical-SMN relative to the general population. IMPACT: Encouraging HPV vaccination and cervical and oral cancer screenings may reduce HPV-SMN burden among AYA survivors.

Hopping as an Indicator of Chemotoxicity: Gait Analysis in Patients With Leukemia and Lymphoma.

BACKGROUND: Survivors of acute lymphoblastic leukemia (ALL) can experience chemotherapy-related changes in neuromuscular function, which can persist and impact the quality of life. Clinically, neuromuscular changes are assessed by observing gait. The primary aims of this study were to compare observational gait/functional movement analysis to matched electronic gait analysis in children with ALL and lymphoblastic lymphoma at specific time points during and after treatment. PATIENTS AND METHODS: Participants 2 to 27 years old diagnosed with ALL/lymphoblastic lymphoma who were on or off therapy within 10 years were eligible. Participants underwent electronic gait assessment using GAITRite, observational gait, and functional movement analysis and completed quality of life questionnaires. Parents also completed quality-of-life assessments. RESULTS: Electronic gait parameters were not different in this cohort compared with controls. Mean overall scores on observational gait and functional movement analysis improved over time. Hopping was the most frequent and walking was the least frequent noted deficit. Participants had a lower patient and parent-reported QoL scores compared with the general population. CONCLUSION: Observational gait and functional movement analysis identified more deficits than the electronic gait assessment. Future studies are warranted to determine whether hopping deficits are an early clinical indicator of toxicity and signal for intervention.

'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.

AIMS AND OBJECTIVES: To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. BACKGROUND: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. DESIGN: An inductive qualitative inquiry. METHODS: In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. RESULTS: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. CONCLUSION: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. RELEVANCE TO CLINICAL PRACTICE: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. PARTICIPANT CONTRIBUTION: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.

Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research.

Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The "Database of Individual Patient Experiences" (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.

Parental decision making regarding consent to randomization on Children's Oncology Group AALL0932.

BACKGROUND: Within pediatric oncology, parental decision making regarding participation in clinical trials that aim to reduce therapy to mitigate side effects is not well studied. The recently completed Children's Oncology Group trial for standard-risk acute lymphoblastic leukemia (AALL0932) included a reduction in maintenance therapy, and required consent for randomization immediately prior to starting maintenance. At our institution, 40% of children enrolled on AALL0932 were withdrawn from protocol therapy prior to randomization due to parental choice. This study sought to identify factors that impacted parental decision making regarding randomization on AALL0932. PROCEDURE: Parents of children enrolled on AALL0932 at our institution were eligible if their child met criteria for the average-risk randomization. Parents were invited to participate in a 30-50-minute phone interview. Questions focused on factors that shaped parental decision making about randomization, as well as their perspectives about the clinical trial experience more generally. RESULTS: Fear of receiving less therapy and subsequent relapse was the predominant reason to decline randomization. Reasons given for consenting to randomization included trust in the physician, altruism, hope for less therapy, and potential for fewer side effects. Parents also reflected on ways to support future families making decisions about clinical trial participation. CONCLUSION: While many parents recognize the importance of clinical trials aiming to mitigate side effects, the fear of their own child relapsing with less than standard therapy may dissuade them from study participation. Recognizing and addressing these concerns will be important for enrollment and retention in future clinical trials.