Cancer knowledge and health-consciousness in childhood cancer survivors following transition into adult care-results from the ACCS project

BACKGROUND: Knowledge on chronic medical conditions in childhood cancer survivors (CCSs) is constantly growing and underlines that long-term follow-up (LTFU) care is often mandatory, also in adulthood. However, many CCSs discontinue follow-up care after transition to adult care. One reason might be that the current transition practices do not meet the needs of adolescent and young adult CCSs. We therefore aim to evaluate different transition models for Swiss CCSs by assessing their cancer knowledge, cancer worries, self-management skills, and expectations for LTFU care, following transition in two different hospital-based models. METHODS: Within the Aftercare of Childhood Cancer Survivors (ACCS) study, we performed a questionnaire-based survey with a cross-sectional and longitudinal part. We included 5-year CCSs aged >16 years at recruitment who were transitioned to adult care in two hospitals between 2014 and 2021. Here, we report the results of the cross-sectional part. We compared the survivors' cancer knowledge with medical record data and assessed cancer worries (6 questions), self-management skills (15 questions), and expectations (12 questions) by validated scales. We used descriptive statistics, chi-squared test, and t-tests to describe the results. RESULTS: We analyzed 57 CCSs (response rate 44%), 60% of those were female, had a median age of 9 years at diagnosis and 23 years at the questionnaire. Most CCSs recalled their diagnosis (95%) and exposure to treatment modalities (98%) correctly. CCSs worried the most about potential late effects (47%) and issues with having children in the future (44%). At least 75% of CCSs agreed to 12 of the 15 self-management questions, indicating high self-management skills. The top three expectations included that physicians know the survivors' cancer history, that visits start on time, and that physicians can always be called in case of questions. CONCLUSION: CCSs receiving hospital-based LTFU care have good cancer knowledge and high self-management skills. The identified worries and expectations will help to improve the LTFU care of CCSs who transition to adult care, to further inform and educate survivors and healthcare professionals about and might be relevant for other countries with a similar healthcare system

Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study.

BACKGROUND Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs); a substantial proportion of CCSs are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors' health if late effects are not discovered in a timely fashion. OBJECTIVE In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models. METHODS The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions. RESULTS To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021. CONCLUSIONS The ACCS study will provide information on CCSs' preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood. TRIAL REGISTRATION ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) PRR1-10.2196/18898

Determining transition readiness in Swiss childhood cancer survivors - a feasibility study.

BACKGROUND The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. METHODS We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. RESULTS We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55-71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. CONCLUSIONS The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs

Transition from pediatric to adult follow-up care in childhood cancer survivors-a systematic review.

PURPOSE The successful transition of childhood cancer survivors from pediatric- to adult-focused long-term follow-up care is crucial and can be a critical period. Knowledge of current transition practices, especially regarding barriers and facilitators perceived by survivors and health care professionals, is important to develop sustainable transition processes and implement them into daily clinical practice. We performed a systematic review with the aim of assessing transition practices, readiness tools, and barriers and facilitators. METHODS We searched three databases (PubMed, Embase/Ovid, CINAHL) and included studies published between January 2000 and January 2020. We performed this review according to the PRISMA guidelines and registered the study protocol on PROSPERO; two reviewers independently extracted the content of the included studies. RESULTS We included 26 studies: six studies described current transition practices, six assessed transition readiness tools, and 15 assessed barriers and facilitators to transition. CONCLUSION The current literature describing transition practices is limited and overlooks adherence to follow-up care as a surrogate marker of transition success. However, the literature provides deep insight into barriers and facilitators to transition and theoretical considerations for the assessment of transition readiness. We showed that knowledge and education are key facilitators to transition that should be integrated into transition practices tailored to the individual needs of each survivor and the possibilities and limitations of each country's health care system. IMPLICATIONS FOR CANCER SURVIVORS The current knowledge on barriers and facilitators on transition should be implemented in clinical practice to support sustainable transition processes

Wie Schweizer Kinder, Jugendliche und junge Erwachsene eine stationäre onkologische Rehabilitation beurteilen.

BACKGROUND Inpatient rehabilitation improves physical and psychosocial performance in childhood cancer patients and their families. Two kinds of inpatient rehabilitation are available in specialized institutions in Germany: family-oriented rehabilitation or peer group-oriented rehabilitation for adolescents and young adults (AYA). Our study aimed to find out what Swiss childhood and AYA cancer patients and their families thought about the rehabilitation programs in which they had participated. PATIENTS AND METHODS We conducted a questionnaire-based, cross-sectional study of Swiss childhood and AYA cancer patients and their families whose inpatient rehabilitation stays were scheduled to take place in Germany between May 2012 and March 2019. We analyzed the data descriptively and present our findings in accordance with the STROBE statement. RESULTS Of the 57 eligible families contacted, 38 (67%) responded. Most rated the rehabilitation stay as very good (68%) or good (26%). Nearly all participants emphasized that these programs should be available to all affected patients and their families. Most (80%) thought the program gave them enough valuable information to enable them to cope with daily life after the stay ended. Only one fifth (19%) of the rehabilitation stays were fully funded by the health or disability insurance. CONCLUSION Participants expressed an overwhelmingly positive opinion about the rehabilitation programs they attended. We are convinced that childhood and AYA cancer patients and their families in Switzerland benefit from these programs and encourage insurances to cover the costs.Hintergrund Spezialisierte stationäre Rehabilitation verbessert die physische und psychosoziale Gesundheit von Kinderkrebspatienten und deren Familien. In Deutschland gibt es 2 entsprechende Rehabilitationsformen: die Familien-orientierte Rehabilitation oder die Gruppenrehabilitation für Adoleszente und junge Erwachsene (AYA). Ziel dieser Studie ist es, dass Schweizer Kinderkrebspatienten und deren Familien ihren absolvierten Rehabilitationsaufenthalt bewerten. Patienten und Methode Diese fragebogenbasierte Querschnittsstudie schloss an Krebs erkrankte Kinder, AYA sowie deren Familien aus der Schweiz ein, die zwischen Mai 2012 und März 2019 an einer stationären Rehabilitation in Deutschland teilgenommen haben. Wir analysierten die Daten deskriptiv und stellen die Resultate gemäss den STROBE-Kriterien dar. Ergebnisse Wir kontaktierten 57 Familien, wovon 38 (67%) teilgenommen haben. Die meisten Teilnehmer beurteilten den Rehabilitationsaufenthalt als sehr gut (68%) oder gut (26%). Fast alle Teilnehmer betonten, dass solche Aufenthalte allen betroffenen Patienten und deren Familien zur Verfügung stehen sollten. Den meisten Teilnehmern (80%) wurden genügend und wertvolle Möglichkeiten aufgezeigt, den Alltag nach der Rehabilitation zu meistern. Nur jeder fünfte Rehabilitationsaufenthalt wurde komplett durch obligatorische Versicherungen bezahlt. Schlussfolgerung Die Teilnehmer haben eine durchwegs sehr positive Meinung über die onkologische stationäre Rehabilitation, die sie in Deutschland besucht haben. Wir sind überzeugt, dass Schweizer Kinder und AYA sowie deren Familien von diesen Rehabilitationsprogrammen profitieren und ermutigen die Versicherungen, die Kosten zu übernehmen