Cancer-Related Fatigue Outcome Measures in Integrative Oncology: Evidence for Practice and Research Recommendations.

Cancer-related fatigue (CRF) is one of the most common symptoms across the cancer continuum and is often underreported and undertreated. Defined as a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or its treatment, CRF includes physical, emotional, cognitive, and spiritual dimensions. Patient-reported outcome (PRO) measures are the most widely used tool to screen for and assess fatigue and the associated negative impacts on quality of life. However, selecting subjective CRF measures can be complex. This has resulted in the availability of and inconsistent use of numerous PROs, limiting the ability to cross-compare outcomes clinically and within research. To address this, the PROs that are most widely reported in the literature are recommended to support the standardization of a core set of validated measures. The National Comprehensive Cancer Network single-item tool for clinical significance is recommended for quick use in clinical environments; the Brief Fatigue Inventory allows for fast, easy, helpful cutoffs on severity threshold for triage, and measures both severity and interference with daily functioning; while the MD Anderson Symptom Inventory allows for multisymptomatic assessment. In addition, a fundamental consideration for any PRO use is the administrative burden on the patient and clinician. In this review, we aim to summarize current, validated PROs specific to CRF to aid clinicians and researchers in patient care and in study design and implementation. We conclude with suggestions for future directions in CRF research that can increase the possibility for long-term impact on future guidelines of fatigue management.

The "Day Zero Talk": the Initial Communication of a Pediatric Oncology Diagnosis by Primary Care Physicians and Other Primary Care Providers.

While much is known about the initial communication of a definitive pediatric cancer diagnosis by the child's pediatric oncologist, little is known about the discussions leading up to this formal conversation, which are often had with nononcologists. We sought to describe these initial conversations regarding the possibility of a child's oncologic diagnosis, from the perspective of both the patient/family as well as the provider. Semistructured interviews were performed with individuals involved with a child with recently diagnosed cancer at a quaternary care institution in an urban, mid-Atlantic city. Interviews were recorded, transcribed, and analyzed using qualitative thematic analysis. In total, 71 people were interviewed, representing the experiences of 29 unique pediatric patients. Patient and caregiver themes included recognition of the urgency of the situation and variety of terms used to indicate the potential of cancer. Physician themes included the impact of health literacy on the discussion and varying opinions on how direct to be regarding the possibility of a cancer diagnosis. The initial discussions of the possibility of a pediatric cancer diagnosis often occur with nononcologists, and this day zero talk is critical in laying the groundwork for future communication with providers.

Educating Childhood Cancer Survivors: a Qualitative Analysis of Parents Mobilizing Social and Cultural Capital.

Childhood cancer impacts the child patient as well as the family and caregivers throughout diagnosis, treatment, and survivorship. Secondary analysis of qualitative data revealed the critical role of parents' adaptability and flexibility when navigating advocacy decisions about their child's schooling following diagnosis and through survivorship. After cancer, adjusting to school means adjusting to a new normal creating challenges related to curriculum, peers, and educators that can affect quality of life. Critically, parents' adjustment to a new advocacy role emerged as an important consideration. Concepts of social and cultural capital aid in understanding the experiences of parents whose children have returned to school following their successful treatment for pediatric cancer. Framed in this way, how parents mobilize (or do not mobilize) these forms of capital as they devise strategies to support their children are understood. This study interprets parent reports and actions as taken often in the hope that they will help both their own child and others that follow, creating mutual benefit for the network of people touched by cancer.

When my four-year-old got cancer: a retrospective on resilience in a paediatric oncology ward.

The author presents an interpersonal experience between the author and her son during childhood cancer treatment and care, illustrating the complex relationship between childhood cancer and the term 'resilience'. During treatment and care, nurses used the term 'resilience' in an apparent attempt to reassure her. However, the author found that the concept distanced her from her and her son's experience, creating emotional distress for him. She discovered that the everyday use of resilience, devoid of its research connotations, has the potential to create barriers in understanding these experiences for the patient and the caregiver. For example, this everyday use did not account for the relationship that resilience has with growth. It is not just important in terms of diagnosing a tumour, it is also important for supporting the agency of a child and the cultivation of trustworthiness. A focus on growth supports the notion of an "active resilience," a process informed by research literature to help medical staff and families develop the child patient's capability for growing into resilience throughout the survivorship experience. By neglecting this relationship with growth, resilience was found to silence the agency and voice of the author's child which added to the difficulty that she had in providing care. As more children survive cancer, a meaningful use of the term resilience can support their recovery from the adversities of treatment and a life of adverse outcomes. The ethnographic detail provides the context necessary for contributing to and unpacking the normative use of the term resilience in paediatric oncology.

Availability of cancer survivorship support services across the National Cancer Institute Community Oncology Research Program network.

BACKGROUND: National cancer organizations recommend provision of nutrition, physical activity, and mental health supportive services to cancer survivors. However, the availability of these services across diverse community oncology settings remains unclear. METHODS: The National Cancer Institute Community Oncology Research Program (NCORP) is a national network of community oncology practices engaged in cancer research. The 2022 NCORP Landscape Assessment (5UG1CA189824) assessed individual practices' establishment of survivorship clinics and nutrition, physical activity, and mental health services, resources, and/or referrals. Descriptive statistics summarized and logistic regression quantified the association between services, practice, and patient characteristics. RESULTS: Of 46 NCORP community sites, 45 (98%) responded to the survey, representing 259 adult practice groups. A total of 41% had a survivorship clinic; 96% offered mental health, 94% nutrition, and 53% physical activity services, resources, and/or referrals. All 3 services were offered in various formats (eg, in-house, referrals, education) by 51% and in-house only by 25% of practices. Practices with advanced practice providers were more likely to have a survivorship clinic (odds ratio [OR] = 3.19, 95% confidence interval [CI] = 1.04 to 9.76). Practices with at least 30% Medicare patients (OR = 2.54, 95% CI = 1.39 to 4.66) and more oncology providers (OR = 1.02, 95% CI = 1.01 to 1.04) were more likely to have all 3 services in any format. Practices with at least 30% Medicare patients (OR = 3.41, 95% CI = 1.50 to 7.77) and a survivorship clinic (OR = 2.84, 95% CI = 1.57 to 5.14) were more likely to have all 3 services in-house. CONCLUSIONS: Larger oncology practices and those caring for more survivors on Medicare provided more supportive services, resources, and/or referrals. Smaller practices and those without survivorship clinics may need strategies to address potential gaps in supportive services.

"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.

Supportive Care in Pediatric Oncology: Opportunities and Future Directions.

The optimization of outcomes for pediatric cancer patients relies on the successful advancement of supportive care to ease the treatment burden and mitigate the long-term impacts of cancer therapy. Advancing pediatric supportive care requires research prioritization as well as the development and implementation of innovations. Like the prevailing theme throughout pediatric oncology, there is a clear need for personalized or precision approaches that are consistent, evidence-based, and guided by clinical practice guidelines. By incorporating technology and datasets, we can address questions which may not be feasible to explore in clinical trials. Now is the time to listen to patients' voices by using patient-reported outcomes (PROs) to ensure that their contributions and experiences inform clinical care plans. Furthermore, while the extrapolation of knowledge and approaches from adult populations may suffice in the absence of pediatric-specific evidence, there is a critical need to specifically understand and implement elements of general and developmental pediatrics like growth, nutrition, development, and physical activity into care. Increased research funding for pediatric supportive care is critical to address resource availability, equity, and disparities across the globe. Our patients deserve to enjoy healthy, productive lives with optimized and enriched supportive care that spans the spectrum from diagnosis to survivorship.