scholarly journals Optimizing childhood oncology care transition from pediatric to adult settings: A survey of primary care physicians’ and residents’ perspectives

2020 ◽  
Vol 43 (2) ◽  
pp. E14-23
Author(s):  
Sophie Marcoux, MD, PhD Marcoux ◽  
Caroline Laverdière

Purpose: The majority of childhood cancer survivors suffer from late adverse effects after the completion of treatment. The prospect of most survivors reaching middle-age is a relatively new phenomenon, and the ways by which current and future primary care physicians (PCPs) will address this novel public health challenge are uncertain. Methods: A survey assessing knowledge level and information delivery preferences regarding long-term follow-up guidelines for adult patients having survived a childhood cancer was distributed by e-mail through the Quebec (Canada) national associations of PCPs and residents (n=238). Results: Participants reported an estimated average of 2.9 ± 1.9 cancer survivors in their yearly caseload, and only 35.3% recalled having provided services to at least one survivor in the last year. Most participants indicated ignoring validated follow-up guidelines for these patients (average score 1.66 on a Likert scale from “1—totally disagreeing” to “5—totally agreeing”). Scarce access to personalized follow-up guidelines and lack of clinical exposure to cancer survivors were identified as main obstacles in providing optimal care to these patients (respective averages of 1.66 and 1.84 on a Likert scale from “1— is a major obstacle” to “5—is not an obstacle at all”). Conclusion: The PCPs and residents rarely provide care for childhood cancer adult survivors. On an individual basis, there is a clear need for increased awareness, education and collaboration regarding long-term care of childhood cancer adult survivors during medical training. On a more global basis, structural, organizational and cultural changes are also needed to ensure adequate care transition.

2015 ◽  
Vol 83 (4) ◽  
pp. 264-271 ◽  
Author(s):  
A. Cárceles-Álvarez ◽  
J.A. Ortega-García ◽  
J.L. Fuster-Soler ◽  
G.A. Rivera-Pagán ◽  
M. Bermúdez-Cortés ◽  
...  

1998 ◽  
Vol 16 (8) ◽  
pp. 2864-2867 ◽  
Author(s):  
K C Oeffinger ◽  
D A Eshelman ◽  
G E Tomlinson ◽  
G R Buchanan

PURPOSE The potential for late effects of treatment necessitates long-term monitoring of adult survivors of childhood cancer. The purpose of this study was to determine how institutions follow up young adult survivors of pediatric malignancy. Specifically, we were interested in the types of health care providers who follow up these patients, how the follow-up is administered, and what barriers to follow-up have been encountered. METHODS A 16-item questionnaire was mailed to the 219 members of the Children's Cancer Group (CCG) and the Pediatric Oncology Group (POG). The survey consisted of four categories of questions that asked for information regarding the existence of a program to follow up young adults, the setting of the program, routine activities of the program, and commonly encountered barriers to care. RESULTS One hundred eighty-two members returned the survey (83% response rate). Fifty-three percent of the respondents have a long-term follow-up clinic at their institution. Whereas 44% have a mechanism for following up adult survivors, only 15% of the programs have established a formal database for adults. Nearly all the programs (93%) use a pediatric oncologist. Although an adult oncologist assists in 13% of the programs, primary care physicians are uncommonly (8%) involved. CONCLUSION Few programs focus on the long-term health care needs of adult survivors of childhood cancer. The majority of existing programs are in pediatric institutions, without significant input from adult-oriented, generalist health care providers.


Blood ◽  
2007 ◽  
Vol 110 (11) ◽  
pp. 3312-3312 ◽  
Author(s):  
Peter J. Rosen ◽  
Richard C. Wender ◽  
Haleh Kadkhoda ◽  
Scott L. Kober

Abstract In 2004, the Centers for Disease Control and Prevention awarded funding (Coop. Agreement No. U58/CCU324301-01) for the Hematologic Oncology Primary Intervention Networking Group (HOPING), a national educational initiative of the Institute for Continuing Healthcare Education (the Institute). HOPING was developed to increase survivorship of patients with hematologic malignancies beyond 5 years. Its intent was to educate PCPs on the signs and symptoms of hematologic malignances to encourage more appropriate and timely referrals to a specialist, as well as to identify and bridge gaps in knowledge regarding the long-term follow-up and care of survivors of hematologic malignancies. Methods: Educational strategies included live presentations at primary care conferences, distribution of resource materials at an educational booth, and a resource Web site (www.hopingdocs.org). As part of the HOPING initiative, immediate participant feedback was gathered during live programs through an audience response system as well as through registrant surveys distributed at the booth and on the Web. The questions within those two settings were intended to gauge the practitioner’s ability to properly recognize the signs and symptoms of hematologic malignancies and provide appropriate follow-up care for patients with hematologic malignancies. Results: Data were collected from a total of 357 individuals (277 from live activities, 80 from online/booth surveys). Approximately 64% of the live program survey respondents were physicians; the majority identified themselves as family practice/family medicine or internal medicine specialists. When asked how they would monitor a 54-year-old male patient free from Hodgkin’s lymphoma for five years, only 44% of respondents correctly indicated that they would conduct an annual physical exam, clinical lab tests, thyroid function tests, and a chest x-ray. Respondents also showed lack of knowledge regarding appropriate studies to order for a patient presenting with specific symptoms and laboratory test results consistent with leukemia. The online/booth surveys were completed by 80 respondents; specific demographic data were not collected. Only 22% of respondents said that they are confident educating patients (and/or their caregivers) about hematologic malignancies. Respondents’ experience with available blood tests for MGUS and MDS was particularly poor -- only 10% said that they "have ordered" such tests while 46% were "unaware" of available tests. The overall ability of respondents to detect possible signs and symptoms of hematologic malignancies (specifically, leukemia, lymphoma, and multiple myeloma) was also low. Conclusion: In the eyes of the primary care community, hematologic malignancies are low-volume, high-risk conditions, and the complexity of diagnosing and providing long-term care to patients with hematologic malignancies is a growing challenge. Post-treatment chronic conditions such as late-onset cardiomyopathy, hypertension, and secondary malignancies often develop after therapy for hematologic malignancies and must be properly managed. Gaps in knowledge regarding the signs, symptoms, and diagnosis of hematologic malignancies may negatively impact timely referral to specialists. Because of their increasingly vital role in the cancer care continuum, PCPs need additional education to improve the short- and long-term outcomes of patients with hematologic malignancies.


BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann

Abstract 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.


2014 ◽  
Vol 62 (2) ◽  
pp. 322-328 ◽  
Author(s):  
Morven C. Brown ◽  
Gillian A. Levitt ◽  
Eva Frey ◽  
Edit Bárdi ◽  
Riccardo Haupt ◽  
...  

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
M. Abe ◽  
S. Tsunawaki ◽  
M. Dejonckheere ◽  
C. T. Cigolle ◽  
K. Phillips ◽  
...  

Abstract Background While dementia is a common problem in Japan and the US, primary care physicians' practices and perspectives about diagnosing dementia in these different healthcare systems are unknown. Methods Qualitative research was conducted in an ethnographic tradition using semi-structured interviews and thematic analysis in primary care settings across Japan and in the Midwest State of Michigan, US. Participants were a total of 48 primary care physicians, 24 each from Japan and the US participated. Both groups contained a mixture of geographic areas (rural/urban), gender, age, and years of experience as primary care physicians. Results Participants in Japan and the US voiced similar practices for making the diagnosis of dementia and held similar views about the desired benefits of diagnosing dementia. Differences were found in attitudes about the appropriate timing of formally diagnosing dementia. Japanese physicians tended to make a formal diagnosis when problems that would benefit from long-term care services emerged for family members. US physicians were more proactive in diagnosing dementia in the early stages by screening for dementia in health check-ups and promoting advance directives when the patients were still capable of decision-making. Views about appropriate timing of diagnostic testing for dementia in the two systems reflect what medical or nursing care services physicians can use to support dementia patients and caregivers. Conclusions Benefits of making the diagnosis included the need to activate the long-term care services in Japan and for early intervention and authoring advance directives in the US. Testing to establish an early diagnosis of dementia by primary care physicians only partly relates to testing and treatment options available. Benefits of making the diagnosis included the need to activate the long-term care services in Japan and for early intervention and authoring advance directives in the US.


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