Primary care utilization and barriers among pediatric cancer and bone marrow transplant survivors.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e22523-e22523
Author(s):  
Keagan Lipak ◽  
Cynthia Gerhardt ◽  
Randal S. Olshefski ◽  
Rajinder Bajwa ◽  
Micah Skeens
Keyword(s):  
Primary Care ◽  
Bone Marrow ◽  
Childhood Cancer ◽  
Bone Marrow Transplant ◽  
Primary Care Physicians ◽  
Family Income ◽  
Primary Care Providers ◽  
Marrow Transplant ◽  
Annual Family Income

e22523 Background: The Institute of Medicine (IOM) report on childhood cancer survivorship specified the need to create and evaluate standards and alternative models of care delivery, including collaborative practices between oncologists and primary care physicians (PCP).1 We aimed to examine the utilization of primary care physicians by childhood cancer and bone marrow transplant (BMT) survivors, as well as identify barriers to non-oncology follow-up care. Methods: Survivors and caregivers were recruited from a cancer and bone marrow transplant survivorship clinic at a large Midwestern pediatric hospital. Participants completed a demographic survey and an 8-item semi-structured interview in clinic or online. Results: A total of 472 participants (211 survivors, 259 caregivers, 2 left unanswered) completed the survey (Survivors Mage= 26.11, SD= 7.32). Most participants were Caucasian (89%) and female (58%). Only 57 (12.3%) survivors received a BMT. There were no significant differences in PCP utilization between BMT survivors and those who did not receive a BMT, t(448) = -.519, p = .604. In addition, there were no significant group differences in PCP utilization between oncological and hematologic survivors, t(387) = 1.144, p = .253. Most survivors (87%) had a PCP, but 43% sought care for ill visits only. Survivors most commonly chose their PCP through referral from family or friends (45%), with only 4% obtaining a recommendation from their oncology provider. Top reasons for not having a PCP included being unsure who to see (52%), lack of insurance (20%), and not perceiving a need for a PCP (18%). In a logistic regression, greater annual family income ( β= .209, p< .001) and having health insurance ( β= .161, p< .01) were predictive of having a PCP. The frequency of PCP visits was also positively correlated with annual family income ( r= .13, p= .014). Conclusions: While most survivors had a PCP, higher income and insurance coverage were important predictors of having a PCP. There is a clear need for education and formal transition programs to primary care, as survivors and their family identified the need for guidance in choosing a PCP. Stronger partnerships between oncology and primary care providers may improve surveillance and outcomes for these survivors. 1. Blaauwbrock R, Zwart, N., Bouma, M., Meyboom-de Jung, B., Kamps, W., & A. Postma. The willingness of general practitioners to be involved in the follow up of adult survivors of childhood cancer. Journal of Cancer Survivors. 2007;1:292-297.

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
Keyword(s):  
Primary Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Primary Care Physicians ◽  
Adult Survivors ◽  
Likert Scale ◽  
Care Transition ◽  
Term Care

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.

EXTENDED FOLLOW-UP IN 212 LONG-TERM ALLOGENEIC BONE MARROW TRANSPLANT SURVIVORS ISSUES OF QUALITY OF LIFE

1993 ◽  
Vol 55 (3) ◽  
pp. 551-556 ◽  
Author(s):  
GERHARD M. SCHMIDT ◽  
JOYCE C. NILAND ◽  
STEPHEN J. FORMAN ◽  
FILAR P. FONBUENA ◽  
ANDREW C. DAGIS ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bone Marrow ◽  
Bone Marrow Transplant ◽  
Marrow Transplant ◽  
Allogeneic Bone Marrow ◽  
Allogeneic Bone ◽  
Allogeneic Bone Marrow Transplant

Autoimmune Lymphoproliferative Syndrome (ALPS): A Case with Congenital Onset

2007 ◽  
Vol 10 (4) ◽  
pp. 315-319 ◽  
Author(s):  
Samir B. Kahwash ◽  
Bonita Fung ◽  
Stephanie Savelli ◽  
Jack J. Bleesing ◽  
Stephen J. Qualman
Keyword(s):  
Bone Marrow ◽  
Bone Marrow Transplant ◽  
Clinical Picture ◽  
Peripheral Blood ◽  
Marrow Transplant ◽  
Autoimmune Lymphoproliferative Syndrome ◽  
Clinical Onset ◽  
Lymphoproliferative Syndrome

We describe a case of autoimmune lymphoproliferative syndrome (ALPS), which is very unusual with regard to a clinical onset soon after birth, and a clinical picture dominated by splenomegaly, jaundice, and consumptive peripheral blood cytopenias, with minimal lymphadenopathy. Our documented close follow up demonstrated initial involvement of the spleen, followed by involvement of the bone marrow and the peripheral blood. The patient underwent bone marrow transplant and is alive and well 20 months after diagnosis.

scholarly journals Hodgkin Lymphoma in a Thymic Cyst: Report of a Case with Multiple Secondary Neoplasms

2010 ◽  
Vol 2010 ◽  
pp. 1-4
Author(s):  
Saeeda Almarzooqi ◽  
Sue Hammond ◽  
Samir B. Kahwash
Keyword(s):  
Bone Marrow ◽  
Hodgkin Lymphoma ◽  
Bone Marrow Transplant ◽  
Lymphoproliferative Disorder ◽  
Marrow Transplant ◽  
Thymic Cyst ◽  
Malignant Neoplasms ◽  
Secondary Neoplasms ◽  
Second Malignant Neoplasms

The presentation of Hodgkin Lymphoma in a thymic cyst is rare. We describe a case in a 9 year-old boy, with a long follow-up course, complicated by two secondary neoplasms and a post bone marrow transplant lymphoproliferative disorder. We also review the literature on such presentations and second malignant neoplasms in childhood.

scholarly journals Total Hip Arthroplasty in Very Young Bone Marrow Transplant Patients

2014 ◽  
Vol 4 (1) ◽  
pp. 19-23
Author(s):  
Samuel S Wellman ◽  
Cameron Ledford ◽  
Alexander R Vap
Keyword(s):  
Bone Marrow ◽  
Total Hip Arthroplasty ◽  
Bone Marrow Transplant ◽  
Hip Arthroplasty ◽  
Young Patients ◽  
Marrow Transplant ◽  
Allogeneic Bone ◽  
Total Hip ◽  
Transplant Patients

ABSTRACT Concerns remain about total hip arthroplasty (THA) performed in very young patients, especially those with complex medical history such as allogeneic bone marrow transplantation (ABMT). This study retrospectively reviews the perioperative courses and functional outcomes of ABMT patients <21 years old undergoing primary uncemented THA. Nine THAs were performed in five ABMT patients at an average age of 19.7 years. The interval between ABMT and THA was 73.0 months with clinical follow-up of 25.8 months. Harris Hip Scores (HHS) increased dramatically from preoperatively 44.5 (31.1-53.4) to postoperatively 85.2 (72.0-96.0) and all patients subjectively reported a good (4 hips) to excellent (5 hips) overall outcome. There was one reoperation for periprosthetic fracture fixation but there were no infections or revisions performed. Despite the history of severe hematopoietic conditions requiring ABMT, these very young patients do appear to have improved pain and function following primary THA with short-term follow-up. These results are comparable to prior studies of adult ABMT patients undergoing THA and are encouraging given the complexity of the decision to perform hip arthroplasty in the medically complicated very young patient. Ledford CK, Vap AR, Bolognesi MP, Wellman SS. Total Hip Arthroplasty in Very Young Bone Marrow Transplant Patients. The Duke Orthop J 2014;4(1):19-23.

LYMPHOCYTE RESPONSES AFTER CYTOMEGALOVIRUS INFECTION IN BONE MARROW TRANSPLANT RECIPIENTS—A ONE-YEAR FOLLOW-UP

1985 ◽  
Vol 40 (5) ◽  
pp. 515-519 ◽  
Author(s):  
PER LJUNGMAN ◽  
BERIT LÖNNQVIST ◽  
BRITTA WAHREN ◽  
OLLE RINGDÉN ◽  
GÖSTA GAHRTON
Keyword(s):  
Bone Marrow ◽  
Bone Marrow Transplant ◽  
Cytomegalovirus Infection ◽  
Marrow Transplant ◽  
Transplant Recipients ◽  
One Year ◽  
Lymphocyte Responses

Barriers to caring for survivors of childhood cancer: Primary care providers’ and oncologists’ perspectives.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19194-e19194
Author(s):  
Aminat Adewumi ◽  
Cynthia Gerhardt ◽  
Randal S. Olshefski ◽  
Micah Skeens
Keyword(s):  
Primary Care ◽  
Childhood Cancer ◽  
Late Effects ◽  
Primary Care Physicians ◽  
Care Delivery ◽  
Paper Copy ◽  
Primary Care Providers ◽  
Comfort Level ◽  
Care Providers ◽  
Survivors Of Childhood Cancer

e19194 Background: Advances in treatment have resulted in a growing population of childhood cancer survivors. As most survivors will develop at least one late effect from treatment, it is important to continue to monitor their health. The incidence of late effects increases with age and often are not clinically apparent until decades after cancer treatment. The Institute of Medicine has recommended models of care delivery that include collaboration between oncologists and primary care physicians (PCP). Thus, we explored PCP and pediatric oncologists’ perceptions and experiences with survivors of childhood cancer in primary care. Methods: Recruitment of primary care physicians occurred utilizing the state Board of Medicine listings. A link and a paper copy of the survey were supplied via mail to approximately 3,000 pediatricians. Pediatric oncologists from a large Midwestern hospital completed the survey via email. Results: A total of 197 participants (19 oncologists/ 178 PCPs) completed the survey. The response rate was 95% for oncologists and 6% for PCPs. Although most PCPs (76%, n=134) had cared for a childhood cancer survivor, some respondents (16%, n=8) reported an unwillingness to care for a survivor. Using a ten-point scale, PCPs mean comfort level in caring for survivors of pediatric cancer was 5.78 ( SD= 2.37). PCPs identified the following barriers: limited knowledge of late effects (64%; n=114), lack of communication with oncologist (47%; n=83), and comfort level (38%; n=67). Nearly all oncologists (86%, n=19) reported referring patients to PCPs. Oncologists typically (83%, n=15) referred patients within the first year after treatment. Overall, oncologists were comfortable referring survivors to a PCP ( M=7.5; SD=1.97) and over half were satisfied with the PCP’s care of survivors (57%, n=12). Years in practice and sex of the oncologist were unrelated to comfort level referring to PCP. Conclusions: Barriers faced by PCPs in caring for survivors illustrate a need for increased education and communication between PCPs and oncologists. Attention to these concerns may improve follow-up care and comfort in the referral process.

Clinical Presentation, Risk Profiles and Outcomes of Chemotherapy without Bone Marrow Transplant in a Cohort of Minority Patients with Acute Lymphoblastic Leukemia from a Public Health Hospital

Blood ◽  
2008 ◽  
Vol 112 (11) ◽  
pp. 3958-3958
Author(s):  
Bety Ciobanu ◽  
Shylendra B Sreenivasappa ◽  
Tracy Smiley ◽  
Barbara Yim ◽  
Paula Kovarik ◽  
...  
Keyword(s):  
Bone Marrow ◽  
Bone Marrow Transplant ◽  
Clinical Presentation ◽  
Lymphoblastic Leukemia ◽  
Marrow Transplant ◽  
Cns Disease ◽  
Ph Chromosome ◽  
Wbc Count

Abstract Background: Outcomes of therapy for adult population diagnosed with acute lymphoblastic leukemia (ALL) remain unsatisfactory. Chemotherapy with or without bone marrow transplant (BMT) is the mainstay of treatment. We sought to describe the outcomes of chemotherapy in our population of adults with ALL who were not eligible for bone marrow transplant due to socio-economic reasons. Methods: Data from 50 patients (pts) with ALL over an 8-year period were studied as a retrospective cohort for clinical presentation, response, remission duration and long-term survival. Clinical and survival data were analyzed via Student’s T test and Fisher’s exact test. Time to relapse was analyzed with Kaplan-Meier life table analyses and Log Rank test. Results: There were 16 (32%) women and 34 (68%) men diagnosed with ALL. Median age at diagnosis was 31 years. Hispanics were the majority group with 27 pts (54%), African Americans 11 (22%), Caucasians 8 (16%), and Asian 4 (8%). B precursor ALL was present in 39 pts (78%), T precursor ALL in 8 (16%), and Burkitt’s leukemia in 3 (6%). Cytogenetics were available in 42 pts (84%): 29 pts (58%) were intermediate risk, 12 (24%) poor risk, and 1(2%) good risk. Ph chromosome was present in 6 pts (12%). A WBC above 30,000/dL was seen in 13 pts (25.49%). Myeloid markers were present in 9 (17.64%), CD10 in 45 (88.23%), and CD34 in 34 (66.6%) pts. Four pts (7.84%) had CNS disease at presentation and 3 (5.9%) had mediastinal disease. Based on age, WBC count, cytogenetics, and CNS disease at diagnosis, there were 28 high-risk pts (56%) and 22 standard-risk pts (44%). Majority of pts 38 (76%) received a 4-drug induction chemotherapy (BFM protocol). Hyper-CVAD, and CALGB protocols were used in 6 pts each (12%). A total of 42 pts (84%) achieved remission after first induction chemotherapy. There were 3 deaths (6%) and 5 (10%) nonresponders (NR). After the induction protocol, 19 pts remained in remission but 21 pts (50%) relapsed. Median time to first relapse (TTR) was 12 months. Relapsed pts were re-induced with 2nd line chemotherapy: Hyper-CVAD regimen in 10 pts (47.6%), BFM protocol in 4 (19%), and 33% with other regimens. Eleven pts (52.3%) entered a 2nd remission, 3 died, and 7 NR. Out of 11 pts who achieved a second remission, 5 pts later relapsed, 1 was still in remission at the last follow up, 2 underwent BMT and 3 were lost to follow up. TTR was analyzed according to age, gender, ethnicity, immunophenotype, cytogenetics, WBC count, presence of CD10, CD34, myeloid markers and induction protocol and no significant differences were found. Median overall survival was 16 months (range 1–97 months). Significant differences in survival were found with regards to cytogenetics (poor vs. intermediate risk, p= 0.027), presence of Ph chromosome (p= 0.0002), CNS disease at diagnosis (p= 0.0046), and response to first chemotherapy (p= 0.0032). There were no differences in overall survival according to age, gender, Hispanics vs. other ethnic groups, immunophenotype (B vs. T ALL), WBC count, presence of CD10, CD34, and myeloid markers. Also, the choice of chemotherapy regimen did not impact survival significantly. Conclusions: This cohort of patients revealed a predominance of younger male adults (median age 31 years), Hispanics (54%) and high-risk disease (56%). Remission rate after induction was 84% and early death rate (6%), comparable to those reported in the literature. 50% of responders relapsed after a median TTR of 12 months. No factors were found to impact the TTR significantly. Median survival was 16 months lower than historical cohort (30 months). Cytogenetics, Ph +, CNS disease at diagnosis and response to chemotherapy had a significant impact on survival but not on TTR. More investigation of factors which affect long-term outcome in minority population is needed.

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