A systematic review of models of care for the follow‐up of childhood cancer survivors

Heirs, Morag; Suekarran, Sara; Slack, Russell; Light, Kate; Gibson, Faith; Glaser, Adam; Hawkins, Michael M.; Phillips, Bob

doi:10.1002/pbc.24253

Cited by 42 publications

(30 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In a systematic review of published and unpublished literature, Heirs et al defined that "follow-up care was useful even for patients who did not perceive this as a need" [32]. Inclusion of the regular biennial collection of data from patients using a selfquestionnaire, such as that administered for the American CCSS cohorts [27,33], combined to a regular clinical visit in a multidisciplinary late-effects clinic, would provide greater consistency with regard to the initial study population and sources of data, improve survivor participation in health surveys, and meet the expectations of those patients who desire greater participation in their care and consideration of their opinions by the medical circle.…”

Section: Discussionmentioning

confidence: 99%

Self-reported and Record-collected Late Effects in Long-term Survivors of Childhood Cancer: A Population-based Cohort Study of the Childhood Cancer Registry of the Rhône-Alpes Region (ARCERRA)

Casagranda¹,

Faure‐Conter²,

Bertrand³

et al. 2013

Pediatric Hematology and Oncology

View full text Add to dashboard Cite

The disparity between reports of late effects by survivors and medical records underscores the need for better communication between survivors and their health care providers. It is important to recognize the potential for bias from both under- and over-reporting in studies based only on survivor self-report. More thorough observation of late effects among survivors of childhood cancer might result from the implementation of a late-effects clinic.

show abstract

Section: Discussionmentioning

confidence: 99%

Self-reported and Record-collected Late Effects in Long-term Survivors of Childhood Cancer: A Population-based Cohort Study of the Childhood Cancer Registry of the Rhône-Alpes Region (ARCERRA)

Casagranda¹,

Faure‐Conter²,

Bertrand³

et al. 2013

Pediatric Hematology and Oncology

View full text Add to dashboard Cite

show abstract

“…We found transitions were individually tailored such that, even within cancer centers, LTF did not fit neatly into any one care model described in earlier research. 7,43 There was inherent tension around whether and when transfer would result in the best care for their patients. These findings support recommendations of flexible models that suit different contexts and Box 4.…”

Section: Discussionmentioning

confidence: 99%

“…No studies compare effectiveness of these models. 43 Shared care is described as the ideal and is hypothesized to be the most cost-effective; however, the degree to which it actually occurs in practice is not known. 7,15 To develop a health services research agenda informing optimal care models, we conducted qualitative research with LTF providers to examine existing models, as well as successes and challenges in maintaining survivors' connections to care across their transitions to adulthood.…”

mentioning

confidence: 99%

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

Mouw

Wertman²,

Barrington³

et al. 2017

Journal of Adolescent and Young Adult Oncology

View full text Add to dashboard Cite

Purpose: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood. Methods: We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques. Results: Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition. Conclusions: Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept.

show abstract

“…A systematic review of several studies, all of which outlined models of long-term follow-up, found that few conclusions could yet be drawn about the most effective models of intervention. 31 The lack of clear answers may drive the need for continued research in this area. 31 …”

Section: Interventions To Reduce Risk Of Treatment-related Cardiotoximentioning

confidence: 99%

Late cardiotoxicity in aging adult survivors of childhood cancer

Armstrong

Ross

2014

Progress in Pediatric Cardiology

View full text Add to dashboard Cite

The survival rate for childhood cancer is steadily improving, and the current estimate for the prevalence of childhood cancer survivors in the United States is 420,000. With this encouraging trend and the aging of this population, there is an ever-increasing responsibility to identify adult survivors of childhood cancer with adverse health outcomes related to cancer treatment across the span of their lives. To accomplish this, large cohort studies have been developed to follow survivors longitudinally. Compared to siblings, survivors have a higher cumulative incidence of morbidity and mortality, and this gap in incidence only widens with age. One of the most significant late toxicities in survivors is late onset cardiotoxicity, largely due to anthracycline and chest-directed radiation exposure. Survivors also have an increased prevalence of traditional cardiovascular risk factors as they age, which potentiates the risk for major cardiac events. Prevention is essential. Minimizing anthracycline dose exposure in pediatric cancer patients is a primary method of cardioprotection. Dexrazoxane and enalapril have also been studied as primary (pre-exposure) and secondary (post-exposure) cardioprotecant agents, respectively. Additionally, the Children’s Oncology Group has published exposure-driven, risk-based screening guidelines for long-term follow-up, which may be a cost-effective way to identify subclinical cardiac disease before progression to clinical presentation. Ongoing research is needed to determine the most effective diagnostic modality for screening (e.g. echocardiography), and the most effective intervention strategies to improve long-term outcomes.

show abstract

A systematic review of models of care for the follow‐up of childhood cancer survivors

Cited by 42 publications

References 15 publications

Self-reported and Record-collected Late Effects in Long-term Survivors of Childhood Cancer: A Population-based Cohort Study of the Childhood Cancer Registry of the Rhône-Alpes Region (ARCERRA)

Self-reported and Record-collected Late Effects in Long-term Survivors of Childhood Cancer: A Population-based Cohort Study of the Childhood Cancer Registry of the Rhône-Alpes Region (ARCERRA)

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

Late cardiotoxicity in aging adult survivors of childhood cancer

Contact Info

Product

Resources

About