Life after paediatric brain tumour; the perspectives of the survivors and their parents.

AIMS: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. DESIGN: A qualitative interview study using reflexive thematic analysis. METHODS: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. RESULTS: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications. CONCLUSION: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. REPORTING METHOD: We used the COREQ guidelines when reporting the study. PATIENT OR PUBLIC CONTRIBUTION: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.

Perceived barriers and facilitators to physical activity in childhood cancer survivors and their parents: A large-scale interview study from the International PACCS Study.

BACKGROUND: Physical activity (PA) may reduce risks of late effects in childhood cancer survivors, yet many have low activity levels. Using the WHO's International Classification of Functioning, Disability, and Health for Children and Youths (ICF-CY) as a conceptual framework, we aimed to identify perceived barriers and facilitators to PA in young survivors and their parents. DESIGN/METHODS: We conducted individual, semi-structured interviews with 63 survivors, aged 9-18 years, ≥1-year off treatment, and 68 parents, recruited from three pediatric oncology departments in Norway and Denmark. Interviews were analyzed inductively using thematic analysis to identify barriers and facilitators to PA, which were mapped onto the ICF-CY model components; body function/structures, activities, participation, and environmental and personal factors. RESULTS: Two-thirds of the survivors described how treatment-related impairments of bodily functions (e.g., fatigue, physical weakness, reduced lung capacity) caused physical limitations, reducing opportunities to participate in PA, especially team sports and school physical education. This resulted in a perceived ability gap between survivors and peers, reducing motivation for PA. These PA barriers were moderated by environmental factors that facilitated or further hindered PA participation (family, peer, and school support). Similarily, personal factors also facilitated (acceptance, motivation, goal setting) or hindered (anxiety, low motivation, and lack of trust) PA participation. CONCLUSION: Treatment-related long-term or late effects represented significant barriers to PA as their functional consequences reduced survivors' capacities and capabilities to be active. Environmental and personal factors acting as facilitators or further barriers to PA were identified. Applying the ICF-CY framework in clinical practice could help to enable PA participation.

Fear of cancer recurrence eight years after early-stage breast cancer - results from a national survey.

BACKGROUND: Fear of cancer recurrence (FCR) in breast cancer survivors (BCSs) is common, associated with reduced quality of life and effective interventions exist. There are knowledge gaps concerning FCR among long-term, early-stage BCSs and its associations with other late effects. Within a national cohort, we explored these knowledge gaps, with the ultimate aim of improved care for BCSs experiencing long-term FCR. METHODS: In this cross-sectional study, all BCSs aged 20-65 years with early-stage breast cancer in 2011-2012 (n = 2803), were identified by the Cancer Registry of Norway in 2019 and mailed a survey including the Assessment of Survivor Concerns used to measure FCR. Factors associated with moderate/high FCR (defined as a sum score of ≥ 6 of a possible range 3-12, or a single score on one of the items of ≥ 3) were explored using a three-block regression analyses including relevant sociodemographic-, health- and cancer-related variables. RESULTS: In total, 1311 BCSs were included (47%). Median age at survey was 60 years. Fifty-six % reported moderate-to-high FCR, associated with younger age (OR 0.96, 95% CI 0.95-0.97) and receiving chemo- and endocrine therapy (OR 1.59, 95% CI 1.15-2.20). After adding late effects into the model, FCR remained significantly associated with these variables, in addition to sleep disturbances (OR 1.58, 95% CI 1.18-2.10). In the final block, adding mental distress, FCR remained significantly associated with younger age (OR 0.97, 95% CI 0.96-0.99), receiving chemo- and endocrine therapy (OR 1.14, 95% CI 1.00-1.97), sleep disturbances (OR 1.44, 95% CI 1.08-1.94) and anxiety (OR 2.67, 95% CI 1.38-5.19). CONCLUSIONS: FCR was prevalent eight years after early-stage breast cancer. Being younger, receiving intensive treatment, experiencing sleep disturbances and/or anxiety were associated with moderate/high FCR. Addressing FCR should be part of standard follow-up care of long-term BCSs.

Exploring reported distress before and pain during needle insertion into a venous access port in children with cancer.

BACKGROUND: Venous access port is commonly used during cancer treatment in children, yet little is known about how children experience such needle insertion procedures. AIM: To study distress before and pain after venous access port needle insertion among children and adolescents with cancer. A second aim was to explore associations between their self-report of procedure-related distress and pain with proxy reports by parents and nurses. METHOD: The sample included 43 children/adolescents, aged 1-16 years with cancer, treated at two Norwegian university hospitals. The patient, parent(s), and the nurse performing the procedure completed developmentally appropriate 11-point distress and pain scales before and immediately after the venous access port procedure. Data were analysed using descriptive statistics and non-parametric correlations. ETHICAL ISSUES: The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Regional Committee for Medicine and Health Research and the data protector officer at the hospitals. RESULTS: For the youngest children (1-5 years), the median distress proxy score was 8 (range 0-9) and pain proxy score 4 (range 0-10). Median distress and pain scores for children aged 6-12 years were 3 (range 0-9) and 1 (range 0-10), respectively, and for the adolescents (age 13-16) 0 (range 0-6) and 1 (range 0-5), respectively. Patients' self-reported distress and pain correlated highly with parents' (distress: rho = 0.83, p < 0.001, pain: rho = 0.92, p < 0.001) and with nurses' proxy ratings (distress: rho = 0.89, p < 0.001, pain: rho = 0.88, p < 0.001). CONCLUSION: There were individual age differences in experienced distress/pain associated with venous access port needle insertion, with a trend for younger children to experience higher levels of distress/ pain than the older children. Children's self-report of distress/ pain concurred with both parental and nurse proxy reports.

The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study.

OBJECTIVE: In this sub-study from the 'PACCS' study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences. METHODS: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. RESULTS: Two main themes were identified: 'The post-treatment gap between expectations and reality' comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, 'Managing the gap', comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. CONCLUSION: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

The use of antidepressants in patients with advanced cancer--results from an international multicentre study.

OBJECTIVES: Depression is common in patients with advanced cancer; however, it is not often recognized and therefore not treated. The aims of this study were to examine the prevalence of the use of antidepressants (ADs) in an international cross-sectional study sample and to identify sociodemographic and medical variables associated with their use. METHODS: The study was conducted in patients with advanced cancer from 17 centres across eight countries. Healthcare professionals registered patient and disease-related characteristics. A dichotomous score (no/yes) was used to assess the use of ADs other than as adjuvant for pain. Self-report questionnaires from patients were used for the assessment of functioning and symptom intensity. RESULTS: Of 1051 patient records with complete data on ADs, 1048 were included (M:540/F:508, mean age 62 years, standard deviation [SD] 12). The majority were inpatients, and 85% had metastatic disease. The prevalence of AD use was 14%. Multivariate logistic regression analyses showed that younger age (odds ratio [OR] 2.46; confidence interval [CI] 1.32-4.55), female gender (OR 1.59; CI 1.09-2.33), current medication for pain (OR 2.68; CI 1.65-4.33) and presence of three or more co-morbidities (OR 4.74; CI 2.27-9.91) were associated with AD use for reasons other than pain. Disease-related variables (diagnoses, stage, Karnofsky Performance Status and survival) were not associated with the use of ADs. CONCLUSIONS: Female gender, younger age, analgesic use and multiple co-morbidities were associated with the use of ADs. However, information is still limited on which variables guide physicians in prescribing AD medication. Further longitudinal studies including details on psychiatric and medication history are needed to improve the identification of patients in need of ADs.

Adolescent Cancer Survivors and Their Parents' Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study.

Background: Transitioning from active cancer treatment to survivorship represents a vulnerable yet underresearched phase for adolescents and their families. Knowledge of their support needs, the challenges they experience, and how they manage them are useful to inform tailored follow-up care. Thus, we aimed to explore their transition experiences. Method: We interviewed 15 adolescents (12-19 years) who had transitioned off of treatment 1 to 47 months prior at Oslo University Hospital's Department of Paediatric Haematology and Oncology and their biological parents (n = 16). The interviews were analyzed using inductive, reflexive thematic analysis inspired by Braun and Clarke. NVivo-12 was used for data management. Results: Four main themes were identified: (a) consequences of cancer beyond transition, (b) transition back to normalcy, (c) survivorship competence, and (d) changes in roles and relationships. The families described happiness and relief but also said that the lingering effects of cancer treatment had a profound impact on day-to-day living. The adolescents expressed closeness with and dependency on their parents, and they perceived family and friends as essential for social readjustment. Discussion: Although adolescent survivors and their parents described a wide variety of strategies for returning to "normalcy," their perspectives also illustrate ongoing psychosocial and educational support needs that changed over time. Our findings indicate a need for improved preparation for and support through the transition. Nurses are well positioned to provide continuous and structured transition support tailored to the needs of the individual survivors and their families.

Sexual Problems as Late Effects: Awareness and Information Needs Among 1870 Long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (The NOR-CAYACS Study).

Purpose: Treatment-related sexual problems are common, but understudied, among survivors of Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS). We investigated awareness of, and information needs regarding, sexual problems as late effects in a nation-wide sample of long-term CAYACS. Methods: Five-year survivors were identified by the Cancer Registry of Norway, diagnosed between 1985 and 2009 with any childhood cancer (0-18 years of age, excluding central nervous system tumors), leukemia, colorectal cancer, breast cancer, non-Hodgkin lymphoma, or malignant melanoma (19-39 years of age). Malignant melanoma survivors treated with local surgery only served as an unmatched reference group. Survivors were mailed a survey, including items on awareness and information needs. Descriptive statistics and logistic regression analyses were used for data analyses. Results: Of 5361 CAYACS invited, 2104 responded (39%), of which 1870 were eligible for inclusion. In all, 62% were aware of sexual problems as late effects (46% aware only, 16% experienced it) and 31% reported information needs. Of all groups, childhood cancer survivors reported the lowest level of awareness (43% aware, 7% experienced it) and the highest information needs (38%). In multivariable models, awareness was associated with higher education, shorter time since treatment, more intense treatments, and experiencing hormonal changes and reduced fertility. Information needs were associated with having experienced sexual problems, female gender, higher treatment intensity, chronic fatigue, and increased depressive symptoms. Conclusions: A substantial proportion of long-term CAYACS report being unaware of, and have information needs regarding sexual problems as late effects decades beyond treatment. Addressing such issues during follow-up care is important.

Effects of Aerobic Exercise on Cardiorespiratory Fitness, Cardiovascular Risk Factors, and Patient-Reported Outcomes in Long-Term Breast Cancer Survivors: Protocol for a Randomized Controlled Trial.

BACKGROUND: Anthracycline-based chemotherapy has been mainstay of adjuvant breast cancer therapy for decades. Although effective, anthracyclines place long-term breast cancer survivors at risk of late effects, such as reduced cardiorespiratory fitness and increased risk of cardiovascular disease. Previous research has shown beneficial effects of exercise training on cardiorespiratory fitness, but the effects of exercise on limiting factors for cardiorespiratory fitness, cardiovascular risk factors, and patient-reported outcomes in long-term survivors are less clear. Whether previous exposure to breast cancer therapy modulates the effects of exercise is also unknown. OBJECTIVE: The primary aim of the CAUSE (Cardiovascular Survivors Exercise) trial is to examine the effect of aerobic exercise on cardiorespiratory fitness in anthracycline-treated long-term breast cancer survivors. Secondary aims are to examine effects of exercise training on limiting factors for cardiorespiratory fitness, cardiovascular risk factors, and patient-reported outcomes, and to compare baseline values and effects of exercise training between similar-aged women with and those without prior breast cancer. A third aim is to examine the 24-month postintervention effects of aerobic exercise on primary and secondary outcomes. METHODS: The CAUSE trial is a 2-armed randomized controlled trial, where 140 long-term breast cancer survivors, 8-12 years post diagnosis, are assigned to a 5-month nonlinear aerobic exercise program with 3 weekly sessions or to standard care. Seventy similar-aged women with no history of cancer will undergo the same exercise program. Cardiorespiratory fitness measured as peak oxygen consumption (VO2peak), limiting factors for VO2peak (eg, cardiac function, pulmonary function, hemoglobin mass, blood volume, and skeletal muscle characteristics), cardiovascular risk factors (eg, hypertension, diabetes, dyslipidemia, obesity, physical activity level, and smoking status), and patient-reported outcomes (eg, body image, fatigue, mental health, and health-related quality of life) will be assessed at baseline, post intervention, and 24 months post intervention. RESULTS: A total of 209 patients were included from October 2020 to August 2022, and postintervention assessments were completed in January 2023. The 24-month follow-up will be completed in February 2025. CONCLUSIONS: The findings from the CAUSE trial will provide novel scientific understanding of the potential benefits of exercise training in long-term breast cancer survivors. TRIAL REGISTRATION: ClinicalTrials.gov NCT04307407; https://clinicaltrials.gov/ct2/show/NCT04307407. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/45244.

Correction: Effects of Aerobic Exercise on Cardiorespiratory Fitness, Cardiovascular Risk Factors, and Patient-Reported Outcomes in Long-Term Breast Cancer Survivors: Protocol for a Randomized Controlled Trial.

[This corrects the article DOI: 10.2196/45244.].

Prepared for survivorship? Multidisciplinary healthcare professionals' experiences with adolescents' transition off cancer treatment: A focus group study.

PURPOSE: Research indicates that re-entering everyday life after completed cancer treatment can be challenging for adolescents, and knowledge about how healthcare professionals prepare them is scarce. This study explored (a) healthcare professionals' experiences with adolescents with cancer transitioning off active cancer treatment; and (b) what healthcare professionals' do to prepare adolescents and their families for this transition; and c) their ideas to improve current practice. METHODS: We conducted 8 focus-group interviews with 56 multidisciplinary healthcare professionals working in paediatric oncology settings across Norway. The sample consisted of nurses, physicians, social workers, psychologists, physiotherapists, a nutritionist, a dentist, a teacher and a music therapist. Inductive thematic analyses was used. RESULTS: We identified three main themes: (a) the multifaceted nature of the end of the treatment phase; (b) navigating challenges in providing early survivorship care; and (c) healthcare professionals' views and wishes regarding their role in transition care. The healthcare professionals conveyed uncertainty regarding how and when to talk about survivorship during treatment. Post-treatment, healthcare professionals' challenges included time restrictions, meeting the families' individual information needs and providing tailored psychosocial care. Suggestions for improvements included checklists, defined roles and dedicated transition consultations. CONCLUSIONS: Healthcare professionals were aware of the challenges families face during transition, and felt many were not addressed adequately. Although they had similar concrete suggestions for improvements, system barriers and lack of time and focus on survivorship were seen to hamper implementation. Implementing a standardized transition programme with increased nurse involvement could potentially improve the transition phase for everyone involved.

"I have to do things differently now, but I make it work"-young childhood cancer survivors' experiences of self-management in everyday living.

PURPOSE: Living with late effects can affect young childhood cancer survivors' (CCSs) self-management (SM) abilities. In this study, we explored different approaches to SM of everyday life by young CCS. METHODS: This is a sub-study of a larger study on Physical Activity among Childhood Cancer Survivors (the PACCS study). We conducted individual interviews with 22 CCS aged 9 to 18 years who were at least 1 year off-treatment. An hybrid inductive-decductive thematic analysis was used. RESULTS: Three main themes were identified: (1) managing everyday life with fatigue, (2) building self-management competence, and (3) cancer survivor as part of identity. Late effects, especially fatigue, contributed to a perceived ability gap compared to peers, limiting participation in everyday activities. CCS developed new SM skills to overcome such challenges and pushed themselves physically and mentally to master and balance activities and rest to regain energy. CCS changed activities, adapted their expectations, or legitimized their apparent lack of SM skills to regain a sense of self-efficacy. Managing the impact of cancer on relationships with family and friends also required use of SM strategies. CONCLUSIONS: The findings expand our currently limited knowledge of young CCS and SM skills they develop to manage everyday life after treatment completion. These, combined with ongoing support from family and peers, "make it work". IMPLICATIONS FOR CANCER SURVIVORS: The perspectives of young CCS illustrate their SM skills and support needs beyond transitioning off-treatment. Conceptualizing this within follow-up care may contribute to a feeling of mastery and increased satisfaction among CCS.

Fatigue following pediatric acquired brain injury: Interplay with associated factors in a clinical trial population compared to healthy controls.

OBJECTIVE: The aims of the present study were to compare fatigue levels in children with pediatric acquired brain injury (pABI) with healthy controls (HCs), and examine the interplay of fatigue with associated factors. METHOD: We used baseline data from a preregistered randomized controlled trial. Seventy-six children aged 10-17 (median 13 years) with pABI in the chronic phase (88% with confirmatory cerebral imaging findings) and executive function (EF) complaints were included, most with moderate disability according to The Glasgow Outcome Scale Extended (GOSE-E) categorization. HCs consisted of 60 children aged 10-17 (median 13 years). All 127 participants completed measures of fatigue and intelligence. pABI participants were also assessed for behavioral problems, health-related quality of life (HRQoL), and EF. Nonparametric statistics were employed, in addition to a network analysis to model the unique associations between parent-reported fatigue and related factors. RESULTS: Parents reported significantly more fatigue in the pABI-group (75% of scores in clinical range; < 70) compared to HCs (11.7% of scores in clinical range). No strong associations were found between fatigue and injury characteristics, but findings indicated more fatigue in the older than younger age-group for pABI participants. Network modeling revealed a central role for HRQoL, behavioral, and EF symptoms in relation to fatigue. CONCLUSIONS: Fatigue is reported to be highly prevalent in the chronic phase of pABI. When addressing fatigue, our findings demonstrate the advantage of including multidimensional measures of fatigue and examining associated psychological and cognitive constructs, such as HRQoL, behavioral problems, and EF. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members.

PURPOSE: Little is known about the emotional concerns expressed by adolescent and young adult (AYA) patients in consultations when a diagnosis of cancer is delivered. Here, we investigated the content of such concerns and how health care providers respond to them. METHOD: We audio-recorded nine consultations with AYA cancer patients (ages: 12-25 years) at the time of diagnosis. We have previously identified and coded 135 emotional concerns and the responses to these in the nine consultations using the Verona Coding Definitions of Emotional Sequences (VR-CoDES) framework. Here, we used qualitative content analysis to study these emotional concerns and categorize them according to overarching themes. We then quantitatively explored associations between the themes of the concerns and whether the responses to them varied according to their themes. RESULTS: We identified four themes for the content of concerns: "Side-effects/late-effects" (39%), "What happens in the near future/practical aspects" (16%), "Fear" (27%) and "Sadness" (17%) (e. g. crying, sighing or other sounds that expressed sadness). Health care providers' responses did not appear to vary according to the different themes of concerns, but typically consisted of providing medical information. CONCLUSION: The content analysis revealed that patients and family members expressed a wide range of emotional concerns. Health care providers tended to respond to the content-aspect of the concerns, but did rarely explicitly acknowledge the affective-aspect of the concerns. The effect of responses to patients' emotional concerns in the important first consultations about the cancer diagnosis and planned treatment should be investigated in future studies.

Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases.

Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients' emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12-25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists' communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists' communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patient's expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists' communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients.

How are patient populations characterized in studies investigating depression in advanced cancer? Results from a systematic literature review.

CONTEXT: Prevalence rates of depression in patients with advanced cancer vary considerably. This may be because of heterogeneous samples and use of different assessment methods. Adequate sample descriptions and consistent use of measures are needed to be able to generalize research findings and apply them to clinical practice. OBJECTIVES: Our objective was twofold: First, to investigate which clinically important variables were used to describe the samples in studies of depression in patients with advanced cancer; and second, to examine the methods used for assessing and classifying depression in these studies. METHODS: PubMed, PsycINFO, Embase, and CINAHL were searched combining search term groups representing "depression," "palliative care," and "advanced cancer" covering 2007-2011. Titles and abstracts were screened, and relevant full-text articles were evaluated independently by two authors. Information on 32 predefined variables on cancer disease, treatment, sociodemographics, depression-related factors, and assessment methods was extracted from the articles. RESULTS: After removing duplicates, 916 citations were screened of which 59 articles were retained. Age, gender, and stage of the cancer disease were the most frequently reported variables. Depression-related variables were rarely reported, for example, antidepressant use (17%) and previous depressive episodes (12%). Only 25% of the studies assessed and classified depression according to a validated diagnostic system. CONCLUSION: Current practice for describing sample characteristics and assessing depression varies greatly between studies. A more standardized practice is recommended to enhance the generalizability and utility of findings. Stakeholders are encouraged to work toward a common standard for sample descriptions.