The information needs of relatives of childhood cancer patients and survivors: A systematic review of quantitative evidence.

OBJECTIVE: We aimed to: (1) summarize the quantitative evidence on the information needs of relatives of childhood cancer patients, survivors, and children deceased from cancer; and (2) identify factors associated with these needs. METHODS: PubMed, PsycINFO, Scopus, and CINAHL were systematically searched. The methodological quality of all included publications was assessed, and the extracted data were analyzed using narrative synthesis. RESULTS: Of 5810 identified articles, 45 were included. Information needs were classified as unmet, met (satisfied), and unspecified and categorized into five domains: medical information, cancer-related consequences, lifestyle, family, and support. Most unmet information needs concerned cancer-related consequences (e.g., late effects), while information needs on support were generally met. Migrant background and higher education were associated with higher information needs among parents. Siblings had lower information needs than parents. CONCLUSION: This systematic review provides a comprehensive overview of the information needs of relatives in the context of childhood cancer, showing that information on cancer-related consequences is needed most often. The socioeconomic background of the relatives needs continued consideration throughout the cancer trajectory. PRACTICE IMPLICATIONS: Our findings suggest the need for personalized information. Healthcare professionals should adapt their communication strategies to respond to the different and evolving needs of all affected relatives.

Incidence and prevalence of musculoskeletal health conditions in survivors of childhood and adolescent cancers: A report from the Swiss childhood cancer survivor study.

PURPOSE: Childhood cancer and its treatment can cause damage to the musculoskeletal system. We aimed to determine the incidence and prevalence of musculoskeletal health conditions (MSHC) in survivors, and to investigate differences by cancer-related characteristics. METHODS: We used data from the Childhood Cancer Registry and the Swiss Childhood Cancer Survivor Study, including survivors (≥5 years since diagnosis; diagnosed 1976-2015 at <20 years of age) aged ≥15 years at study. Cumulative incidence and prevalence of MSHCs (osteoporosis, limb length discrepancy, limited joint mobility, bone/joint pain, scoliosis, changes to chest/ribs and amputation) were calculated from self-reported data. RESULTS: We included 2645 survivors (53% men; median age 24 years, range 15-59 years). Prevalence and cumulative incidence of any MSHC was 21% and 26%, respectively. Incidence rate for any MSHC was 15.6/1000 person-years. Scoliosis (8%), bone/joint pain (7%) and limited joint mobility (7%) were the most prevalent MSHC. MSHC co-occurred with other health conditions in 87% of survivors. We found increased rates of MSHC in women (RR = 1.4, 95%CI: 1.2-1.7), bone tumour survivors (RR = 6.0, 95%CI: 4.5-7.9), survivors older at diagnosis (11-15 years: RR = 1.8, 95%CI: 1.5-2.3), after a relapse (RR = 1.5, 95%CI: 1.3-1.9), treatment with surgery (RR = 1.2, 95%CI: 1.0-1.5), chemotherapy (RR = 1.4, 95%CI: 1.1-1.8) or stem cell transplantation (RR = 1.6, 95%CI: 1.0-2.5), and more recent year of diagnosis (2011-2015: RR = 4.3, 95%CI: 2.8-6.8). CONCLUSION: MSHCs are prevalent in survivors, the risk is increasing in younger survivor cohorts, and MSHCs usually occur in multimorbid survivors. Strengthening of rehabilitation services and appropriate referrals are needed to mitigate the effects of the cancer and cancer treatment.

Exploring grandparents' psychosocial responses to childhood cancer: A qualitative study.

OBJECTIVE: A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. METHODS: We collected data using a semi-structured interview guide and applied qualitative content analysis. RESULTS: We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0-82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0-18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4-1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. CONCLUSIONS: Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system.

Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents.

OBJECTIVE: Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS: CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS: In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.

Smoking trends and health equity in Switzerland between 1992 and 2017: dependence of smoking prevalence on educational level and social determinants.

Background: Switzerland ranks among the top three healthcare systems in the world with regards to healthcare access, suggesting a high degree of health equity. However, Switzerland has few preventive strategies against smoking abuse. The aim of this study is to clarify whether educational level and citizenship status have an influence on the prevalence of smoking in Switzerland and whether there is health inequity related to a lack of preventive strategies. Methods: We based our analysis on publicly available health data published in the Swiss government's Swiss health survey (1992-2017). We compared the prevalence of smoking across the years and correlated these data with levels of educational attainment, citizenship status and age. Results: A continuous significant decline in smokers is observed in the highest education group (TERT). Over time, prevalence was reduced from 29% in 1992 to 23% in 2017 (p < 0.001). The intermediate-level educational group (SEK 2) showed smaller but also significant decline on a 0.05 sigificance level over the same period, from 31% to 29% (p = 0.003). The lowest educational group showed a nonsignificant decline from 28% to 27% (p = 0.6). The population who holds Swiss citizenship showed a decrease in smoking from 28% to 26% within the time frame (p < 0.001). People without Swiss citizenship had a much higher prevalence of smokers, at 38% in 1992 and declining to 32% in 2017 (p < 0.001). All cohorts from age 15 to age 64 have a far higher prevalence of smokers than cohorts at an older age, with the highest prevalence in the 25-34 age group. Conclusion: In Switzerland, individuals with lower levels of education and non-Swiss populations are more susceptible to health risk of smoking. This is despite the existence of a high-quality healthcare system that has nevertheless failed to negated health inequities.

Education, Employment, and Financial Outcomes in Adolescent and Young Adult Cancer Survivors-A Systematic Review.

Adolescents and young adults (AYAs) with cancer face unique challenges. We aimed to describe (i) education, employment, and financial outcomes and (ii) determinants for adverse outcomes in AYA cancer survivors. We performed a systematic literature search. We included original research articles on AYA (15-39 years of age) cancer survivors (≥2 years after diagnosis) and our outcomes of interest. We narratively synthesized the results of the included articles. We included 35 articles (24 quantitative and 11 qualitative studies). Patients in education had to interrupt their education during cancer treatment, and re-entry after treatment was challenging. After treatment, most survivors were employed but started their employment at an older age than the general population. Overall, no disadvantages in income were found. Survivors reported more absent workdays than comparisons. We identified chemotherapy, radiotherapy, late effects or health problems, female sex, migration background, and lower education associated with adverse outcomes. Although most AYA cancer survivors were able to re-enter education and employment, they reported difficulties with re-entry and delays in their employment pathway. To facilitate successful re-entry, age-tailored support services should be developed and implemented.

Posttraumatic growth and illness perception in survivors of adolescent and young adult cancer.

BACKGROUND: Adolescents and young adults (AYAs) are diagnosed with cancer during a challenging period of life. We aimed to (1) describe positive changes (posttraumatic growth; PTG) and illness perception, and (2) determine associations between PTG and illness perception, sociodemographic, and cancer-related characteristics in Swiss AYA cancer survivors. METHODS: We conducted a population-based survey among AYA cancer survivors diagnosed 1990-2005 at age 16-25 years, who had survived ≥ 5 years. We used the Posttraumatic Growth Inventory (PTGI) and the Brief Illness Perception Questionnaire (BIPQ). Data were analyzed using descriptive statistics and linear regressions. RESULTS: Among 389 contacted survivors, 160 responded (61.3% male; mean age = 34 years, SD = 5.8). The mean PTG sum score was 54.63 (SD = 20.24; range: 8-101). Survivors reported high PTG especially in the domains Appreciation of life (mean = 3.23; 95% confidence interval, 3.05-3.40), Personal strength (2.94; 2.77-3.12), and Relating to others (2.57; 2.40-2.74). Neither sociodemographic nor cancer-related characteristics were associated with PTG. Survivors who perceived follow-up care as helpful (p < 0.001) and those with high concerns about the consequences of the illness (p < 0.001) reported higher PTG. CONCLUSIONS: Finding ways to promote PTG and to identify and address maladaptive illness perceptions may help survivors transform their experience into something meaningful for their future life.

The information needs of relatives of childhood cancer patients and survivors: A systematic review of qualitative evidence.

OBJECTIVES: To synthesize qualitative research on the information needs of relatives of childhood cancer patients and survivors. METHODS: Systematic searches of PubMed, PsycINFO, CINAHL, and Scopus identified relevant literature. Extracted data were combined using thematic synthesis. Methodological quality was assessed using the JBI critical appraisal tool for qualitative research. RESULTS: The review included 27 publications, with most research focusing on parents or primary caregivers. Five areas of information needs were identified: treatment, medication, and care; general information about cancer; coping and support; follow-up, late effects, and rehabilitation; and parenting and everyday life. Appropriateness of information depended on health care professionals' aptitude, message characteristics, communication setting, and relatives' personal factors. Preferences for form, sources, and timing for information provision varied. CONCLUSION: The review identified information needs, communication barriers, and preferences among caregivers and siblings of childhood cancer patients and survivors, highlighting areas requiring further research and clinical consideration in addressing the identified challenges. PRACTICE IMPLICATIONS: Caregivers and siblings have unique but similar information needs regarding childhood cancer. To ensure that these needs are met, health care professionals could use eHealth and mHealth technologies, assess each family member's knowledge, and create a safe and supportive environment for questions and feedback.

Worries and anxiety in parents of adult survivors of childhood cancer: A report from the Swiss Childhood Cancer Survivor Study-Parents.

OBJECTIVE: Having a child diagnosed with cancer is distressing for parents. We aimed to compare worries and anxiety in parents of adult childhood cancer survivors with parents of the Swiss general population (GP-parents), and to evaluate characteristics associated with worry in parents of survivors. METHODS: We conducted a nationwide, population-based study in parents of survivors (survivors aged ≥20 years at study, ≤16 years at diagnosis, >5 years post diagnosis) and GP-parents (≥1 child aged ≥20 years at study). We used the Worry and Anxiety Questionnaire (WAQ), and computed the WAQ total score (worries; possible range 0-80) and caseness for generalized anxiety disorder (anxiety), cognitive, somatic, and any criteria. We used multilevel, multivariable linear regression to identify characteristics associated with worries in parents of survivors. RESULTS: We included 787 parents of 513 survivors (41.0% fathers) and 478 GP-parents (42.3% fathers). Parents of survivors and GP-parents did not differ regarding worries (16.6 vs. 17.1, p = .977), anxiety (2.7% vs. 3.6%, p = .536), cognitive (p = .440), and somatic criteria (p = .067). Less parents of survivors met any criteria (17.7% vs. 24.0%, p = .039). Half of parents reported current cancer-related worries. Higher cancer-related worries were reported by mothers (ß = 4.1; 95% CI: 2.0-6.2), parents with one child (ß = 5.9; 95% CI: 2.0-9.7), currently experiencing disadvantages because of their child's former disease (ß = 7.3; 95% CI: 4.0-10.6), or with support needs (ß = 9.0; 95% CI: 3.9-14.2; p = .001). CONCLUSIONS: It is encouraging that most parents of adult survivors report similar worries and anxiety as GP-parents, but cancer-related worries are still prevalent. Efforts should be made to empower parents to seek psycho-social support if required.

Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol.

INTRODUCTION: Long-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium therefore developed the PanCareFollowUp Care Intervention, an innovative person-centred survivorship care model based on experiences in the Netherlands. This paper describes the protocol of the prospective cohort study (Care Study) to evaluate the feasibility and the health economic, clinical and patient-reported outcomes of implementing PanCareFollowUp Care as usual care in four European countries. METHODS AND ANALYSIS: In this prospective, longitudinal cohort study with at least 6 months of follow-up, 800 childhood cancer survivors will receive the PanCareFollowUp Care Intervention across four study sites in Belgium, Czech Republic, Italy and Sweden, representing different healthcare systems. The PanCareFollowUp Care Intervention will be evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework. Clinical and research data are collected through questionnaires, a clinic visit for multiple medical assessments and a follow-up call. The primary outcome is empowerment, assessed with the Health Education Impact Questionnaire. A central data centre will perform quality checks, data cleaning and data validation, and provide support in data analysis. Multilevel models will be used for repeated outcome measures, with subgroup analysis, for example, by study site, attained age, sex or diagnosis. ETHICS AND DISSEMINATION: This study will be conducted in accordance with the guidelines of Good Clinical Practice and the Declaration of Helsinki. The study protocol has been reviewed and approved by all relevant ethics committees. The evidence and insights gained by this study will be summarised in a Replication Manual, also including the tools required to implement the PanCareFollowUp Care Intervention in other countries. This Replication Manual will become freely available through PanCare and will be disseminated through policy and press releases. TRIAL REGISTRATION NUMBER: Netherlands Trial Register (NL8918; https://www.trialregister.nl/trial/8918).

Fatigue self-management education in persons with disease-related fatigue: A comprehensive review of the effectiveness on fatigue and quality of life.

OBJECTIVES: To systematically synthesize the effectiveness of fatigue self-management education (SME) on fatigue and quality of life (QoL) in persons with disease-related fatigue, and to describe the intervention characteristics. METHODS: We systematically reviewed the literature on SMEs in people with disease-related fatigue. We included randomized controlled trials (RCT), which aimed to improve self-management skills for fatigue in daily life. We synthesized the effectiveness and mapped the intervention characteristics. RESULTS: We included 26 RCTs studying samples from eight disease groups. At follow-up, 46% studies reported statistically significant improvements on fatigue and 46% on QoL. For persons with cancer 6/8 and multiple sclerosis 8/10 RCTs showed positive evidence in favor of SME. The range of effect sizes was wide (d: 0.0 ->0.8). Delivery modalities (inpatient, outpatient, home), interactions (individual, group, remote), and duration [range (h): 1-17.5] varied. CONCLUSIONS: The overall evidence on the effectiveness of SMEs on fatigue and QoL is limited and inconsistent. For persons with cancer and multiple sclerosis, the evidence provides a positive effect. The RCTs with medium to large effect on QoL indicate the potential benefit of SMEs. PRACTICAL IMPLICATION: Duration and peer interaction should be considered when tailoring SMEs to populations and contexts.

"I don't take for granted that I am doing well today": a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors.

PURPOSE: With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS' needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors' wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors' unmet needs. METHOD: In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. RESULTS: Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS' ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment. CONCLUSION: In our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors' needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support.

The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer.

BACKGROUND: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union-funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. PATIENTS AND METHODS: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. RESULTS: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. CONCLUSIONS: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being.

The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers.

BACKGROUND: The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. METHODS: The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline-based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. RESULTS: Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. CONCLUSIONS: The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer.

BACKGROUND: The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. METHODS: Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. RESULTS: Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS' concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. CONCLUSIONS: With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

Healthcare professionals' opinions on psychological screening in follow-up care for childhood cancer survivors.

INTRODUCTION: Implementation of screening for psychological distress in populations at risk, as recommended in existing guidelines, can be challenging on different levels: structural, organisational and personal (provider and patient). A specific group at risk for psychological distress, including anxiety and depression, is the growing population of childhood cancer survivors (CCS). In many countries, including Switzerland, the standardised assessment of psychological late effects during follow-up care is not yet established. The emotion thermometer, a short and validated assessment tool to screen for psychological distress, might facilitate implementation of psychological screening in Swiss CCS follow-up care. AIMS OF THE STUDY: To inform implementation strategy and assess readiness of centres to integrate standardised psychological screening, we conducted a cross-sectional survey. We describe healthcare professionals’ opinions on (i) the current standard of psychological screening in follow-up care, (ii) their experience using the emotion thermometer, and (iii) perceived barriers and facilitators of possible implementation of psychological screening, including the emotion thermometer. METHODS: We contacted 49 healthcare professionals involved in CCS follow-up care in all nine paediatric oncology clinics in Switzerland. The electronic survey included closed and open questions. RESULTS: A majority of the healthcare professionals (17/24, 71%) stated that assessment of psychological distress is currently not standard in follow-up care. On the contrary, about half of them (11/24, 46%) think that psychological distress is adequately assessed in follow-up care. None of the participants had any previous experience with the emotion thermometer. After being informed about the emotion thermometer, nearly 80% (19/24) agree that it appears to be a good screening instrument and support the idea of regular application during follow-up care. Facilitators of implementation included the instrument’s brevity, its ability to visualise psychological topics and raising awareness of the need to think about the psychological side of follow-up care. Barriers included lack of time, the additional effort and the perception that instead an informal assessment would be sufficient. Concerns about using an artificial assessment, rather than a natural conversation, were also expressed. CONCLUSIONS: There is overall agreement that screening for psychological late effects is not yet standard in follow-up care in Switzerland. It is important to mitigate perceived barriers and concerns of healthcare professionals to enable a successful implementation of psychological distress screening according to the established standards of care.

Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

PURPOSE: Cancer-related fatigue (CRF) negatively affects the lives of childhood, adolescent, and young adult (CAYA) cancer survivors. We aimed to provide an evidence-based clinical practice guideline (CPG) with internationally harmonized CRF surveillance recommendations for CAYA cancer survivors diagnosed < 30 years. METHODS: This CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of four existing CPGs, we performed systematic literature searches. We screened articles for eligibility, assessed quality, extracted, and summarized the data from included articles. We formulated recommendations based on the evidence and clinical judgment. RESULTS: Of 3647 articles identified, 70 articles from 14 countries were included. The prevalence of CRF in CAYA cancer survivors ranged from 10-85%. We recommend that healthcare providers are aware of the risk of CRF, implement regular screening with validated measures, and recommend effective interventions to fatigued survivors. CONCLUSIONS: A considerable proportion of CAYA cancer survivors suffers from CRF even years after the end of treatment. IMPLICATIONS FOR CANCER SURVIVORS: We recommend that healthcare providers adopt regular screening to detect and treat CRF early and positively influence survivors' health and quality of life.

Post-traumatic stress in parents of long-term childhood cancer survivors compared to parents of the Swiss general population.

BACKGROUND: We describe post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD) in parents of long-term childhood cancer survivors (CCS-parents) and compare them to parents of similar-aged children (comparison-parents) of the Swiss general population (SGP). We compare type of reported stressful event, prevalence of PTSS and PTSD, and psychosocial and cancer-related characteristics associated with PTSS. We further describe the respective normative data for the SGP. METHODS: We conducted a nationwide cross-sectional questionnaire survey in a population-based sample of long-term CCS-parents (survivors aged ≤16 years at diagnosis, ≥20 years at study, >5 years post-diagnosis) and in the SGP. Using the Impact of Event Scale-Revised, we measured PTSS regarding the most stressful event experienced, and computed probable cases of PTSD. RESULTS: Participants included 663 CCS-parents (39.4% fathers) and 1035 individuals of the SGP (40.0% male), of which we identified 391 comparison-parents (41.2% fathers). Illness was most often indicated as stressful event (CCS-parents: 49.5%, comparison-parents: 27.6%, SGP: 25.3%). Prevalence of PTSS and PTSD (CCS-parents: 4.8%, comparison-parents: 6.7%, SGP: 5.6%) did not significantly differ. Lower education was associated with higher intrusion, avoidance, and hyperarousal in all samples (all P ≤ .003). Parents of children with a chronic illness reported higher intrusion (all P ≤ .004). We found no associations with cancer-related characteristics. CONCLUSIONS: No increased risk for PTSS or PTSD was found among CCS-parents. Individuals with lower education and those with a chronically ill child might benefit from additional support to help manage and resolve the stress symptoms in the long term.

A systematic review on the use of the emotion thermometer in individuals diagnosed with cancer.

OBJECTIVE: Physiological and psychological sequelae are frequent after a cancer diagnosis and also on the long term. Screening could help detect psychological distress early and thus enable timely provision of adequate treatment. The emotion thermometer (ET) is a validated screening tool including five dimensions (distress, anxiety, depression, anger, and need-for-help). Reviewing the literature, we aimed to describe (a) the validity and (b) the application of the ET. METHODS: Six databases were systematically searched for studies using the ET in individuals diagnosed with cancer. Included studies were critically appraised for methodological quality. ET validity and application were narratively synthesized. RESULTS: We identified 580 records eligible for title-abstract screening. Seventeen studies based on 13 different populations were included. Validation studies (5 of 17) concluded that the ET is sensitive to distress detection, delivering prompt and accurate results with no negative impact on clinic visit time. Furthermore, its use is accepted in patients and clinicians. The remaining 12 exploratory studies applied the ET for screening purposes (3 of 12), as outcome measure (6 of 12), or as predictor variable measure (3 of 12). Most studies were conducted in Europe (11 of 17), and 7 of the 12 exploratory studies used the recommended cutoff (greater than or equal to 4). Study populations were mostly female (9 of 13) with a mean age greater than 50 years (12 of 13) at study. CONCLUSIONS: Publications on distress screening with the ET are scarce, especially among young populations. However, research and studies' recommendations support the ET's utility as a valid and feasible tool for distress screening including anxiety and depression and suggest its implementation as part of a structured program for early screening in cancer care.

"I wish someone had once asked me how I'm doing": Disadvantages and support needs faced by parents of long-term childhood cancer survivors.

BACKGROUND: Childhood cancer affects the whole family and can have a lasting impact on parents of childhood cancer survivors (CCS). We aimed to (1) describe parents' perspective of currently experienced disadvantages and of their support needs during treatment, after treatment, and today; (2) identify characteristics associated with disadvantages and support needs; and (3) describe the use of existing support services. PROCEDURE: In this population-based study, we identified parents of CCS (diagnosed ≤16 years of age, ≥5 years since diagnosis, aged ≥20 years at study) through the Swiss Childhood Cancer Registry (SCCR). Parents completed a questionnaire on perceived disadvantages (e.g., job-related, financial, etc.), support needs (e.g., job-related, financial, etc.), and socio-demographics. Cancer-related characteristics were available from the SCCR. We used multivariable multilevel logistic regression to identify characteristics associated with disadvantages and support needs. RESULTS: An average of 24 years after diagnosis, one-fifth of parents (n = 59/308; 19.2%) reported disadvantages, and 7.1% reported support needs. Many parents had desired more support during (66.9%) or after (34.4%) their child's cancer treatment. Parents whose child experienced late effects (OR = 26.6; 95% CI, 2.9-241.0) or was dependent on parents (OR = 10.6; 95% CI, 2.1-53.7) reported greater current need for more support. Almost half of parents (43.5%) reported having used existing support services. CONCLUSIONS: Many parents need more support during and after active treatment of their child's cancer, and some experience support needs and disadvantages long into survivorship. Better promotion of existing services for parental and familial support and setting up new services, where needed, may help parents in the long term.