Skip to main content

Find A Doctor

 

Adult-care doctor

Pediatrician specialist

Obsetrician

 

Clinics & Services

 

Adult Care

Pediatric Care

Obstretics

Clinical Trials

Locations

Stanford Health Care

Stanford Children's Health

Emergency Department

Dial 911 in the event of a medical emergency

Explore Health Care

Learn how we are healing patients through science & compassion

Basic Science

Clinical Science

Institutes

Research centers

See full directory

 

Research Resources

 

Research administration

Academic profiles

Clinical trials

Funding opportunities

See all

 

Professional Training

 

Postdoctoral scholars

Clinical research fellows

Research News

Michelle Monje

Nueroscientist Michelle Monje awarded MacArthur 'genius grant'

Explore Research

Learn how we are fueling innovation

Publications

      Stephanie Melissa Smith

    • Incidence and Risk Factors for Steroid-associated Osteonecrosis in Children and Adolescents: A Systematic Review of the Literature.

      Johnson, T., Naz, H., Taylor, V., Farook, S., Hofmann, G., Harbacheck, K., Pham, N. S., Smith, S. M., Chao, K., Lee, T., Goodman, S., Shea, K.

      Journal of pediatric orthopedics

      ABSTRACT
      Steroid-associated osteonecrosis in pediatric patients with inflammatory and oncologic disease is an uncommon yet debilitating condition causing significant functional disability. Pediatric orthopaedic surgeons encounter this population during stages in which surgical intervention may be necessary for joint preservation. Various risk factors for steroid-associated osteonecrosis have been suggested, but a comprehensive systematic review of the literature has not been performed. The purpose of this systematic review is to investigate incidence and risk factors for steroid-associated osteonecrosis in pediatric, adolescent, and young adult patients to help guide clinical decision-making.We conducted a systematic review of the literature according to the preferred reporting items for systematic reviews and meta-analyses guidelines. MEDLINE, Embase, PubMed databases, and the Cochrane Central Registry of Controlled Trials were used to search for studies assessing risk factors for osteonecrosis in patients 0 to 21 years of age with systemic corticosteroid exposure. Two reviewers independently screened titles, abstracts, and full texts of retrieved studies for inclusion. Quality assessment of retrospective and prospective nonrandomized case-control and cohort studies was completed using the MINORS criteria. Outcomes and variables of interest included reported incidence and demographic, clinical, radiographic, and genetic risk factors for steroid-associated osteonecrosis. Reported statistics were deemed significant if P <0.05. Due to heterogeneous and limited reporting, data were not combined in a meta-analysis.The literature search revealed 895 articles and 37 articles were included. Of the included studies, 47% were retrospective cohort studies, and 39% were prospective cohort studies. There were 3 randomized controlled trials included. of the included studies, 95% were conducted in patients with leukemia and/or lymphoma. The overall prevalence of steroid-associated osteonecrosis ranged from 1% to 39%. Osteonecrosis was diagnosed with a mean or median of 1 to 2 years after the start of steroid therapy, and the most frequently involved joints were knees, followed by hips. Age older than 10 years, female gender, greater body mass index, and white and non-Hispanic race were the most reported risk factors for steroid-associated osteonecrosis. Core decompression was a frequent operative treatment with variable improvement in outcomes. For pediatric leukemia patients, those stratified as High risk and Intermediate risk were at the greatest risk for steroid-associated osteonecrosis.This systematic review summarizes specific risk factors and demographics of steroid-associated osteonecrosis and helps lay the foundation for future studies to delineate the causal role of risk factors and guides clinical decision-making for current and proposed screening techniques. Steroid-associated osteonecrosis is often asymptomatic with clinical symptoms frequently lagging presentation on advanced imaging. The development of standard clinical pathways that incorporate screening for osteonecrosis may become necessary to improve outcomes through early detection and interventions such as core decompression to reduce pain and prevent progression to early osteoarthritis.
      https://www.ncbi.nlm.nih.gov/pubmed/40078093 https://doi.org/10.1097/BPO.0000000000002919
      More

    • Identifying the Financial Toxicity Experiences of Childhood Cancer Survivors Through Partnership With a Community Organization Serving Rural and Minoritized Families.

      Benedict, C., Bloomer, K., Billman, E., Smith, M., Boynton, H., Schapira, L., Smith, S. M.

      Psycho-oncology

      ABSTRACT
      Financial toxicity (FT) refers to cancer-related economic distress and hardship, and disproportionately affects adolescent/young adult (AYA) survivors and minoritized groups. This study explored the FT experiences of AYA survivors of childhood cancer and their parents, and the perspective of staff members of a community-based cancer support organization in a rural region with majority Hispanic/Latino (H/L) residents and high rates of non-English language preference.A needs assessment study was conducted in partnership with Jacob's Heart, a nonprofit organization that serves predominantly H/L families of childhood cancer in a rural region in California. English- and Spanish-speaking AYA survivors, parents, and Jacob's Heart staff members completed semi-structured interviews. Qualitative data were analyzed using an applied thematic analysis approach.Participants included 12 AYAs, 11 parents, and 7 organization staff. Material hardship was characterized by direct and indirect medical costs (e.g., time, transportation), which impacted parents' employment, required balancing caregiving and financial needs, and caused economic strain. Behavioral effects of FT included adaptations to meet basic needs; cost-coping behaviors included skipping medical visits. Parents and survivors experienced financial stress and worry, exacerbated by disruption in parents' employment and income, transportation pressures of living in a rural area, challenges obtaining or maintaining insurance coverage, and lack of a safety net. Support needs and resources were described.AYA survivors of childhood cancer and their parents experience long-lasting FT across multiple domains, which is exacerbated by socioeconomic and structural factors. Interventions targeting FT should partner with community-based organizations to reach vulnerable populations.
      https://www.ncbi.nlm.nih.gov/pubmed/40097346 https://doi.org/10.1002/pon.70120
      More

    • Risk Factors for Corticosteroid-associated Osteonecrosis in Children: A National Database Study.

      Smith, G. B., Pham, N. S., Alayleh, A., Smith, S., Chao, K., Goodman, S. B., Shea, K. G.

      Journal of the Pediatric Orthopaedic Society of North America

      ABSTRACT
      Corticosteroid-associated osteonecrosis presents a risk for severe pain and joint collapse. While the relationship between corticosteroid treatment and osteonecrosis in pediatric patients is well-documented, less is known about which patients are at greatest risk across medical conditions. The purpose of this study was to identify high-risk pediatric populations for developing osteonecrosis following corticosteroid treatment across autoimmune, inflammatory, and oncologic conditions.The Merative MarketScan Research Databases (2007-2022) were queried to identify pediatric patients with an outpatient oral or intravenous corticosteroid prescription. Demographic, clinical, and prescription differences between osteonecrosis and non-osteonecrosis patients were analyzed using t-tests, Fisher's exact, and chi-square tests. Factors associated with time to osteonecrosis were assessed using a multivariable Cox proportional-hazards regression model.We identified 5,606,781 pediatric patients who received corticosteroids, and 131 developed osteonecrosis. The mean time to osteonecrosis following corticosteroid administration was 7.1 months (SD = 5.2). Osteonecrosis patients were significantly older at the age of corticosteroid administration (12.1 [SD = 4.9] vs. 8.2 [5.6], P < .001) and were prescribed corticosteroids for more total days (136.6 [224.8] vs. 17.1 [89.2], P < .001) compared to patients who did not develop osteonecrosis. Adjusting for all other covariates, risk factors for osteonecrosis include acute lymphoblastic leukemia (HR = 575.82, 95% CI = [346.68, 956.40], P < .001), systemic lupus erythematosus (HR = 106.41, 95% CI = [44.65, 253.63], P < .001), Crohn's disease (HR = 6.67, 95% CI = [1.54, 28.86], P = .011), juvenile idiopathic arthritis (HR = 4.62, 95% CI = [1.06, 20.08], P = .041), solid organ transplant (HR = 4.24, 95% CI = [2.08, 8.65], P < .001), dexamethasone (HR = 2.59, 95% CI = [1.56, 4.28], P < .001), older age (hazard ratio [HR] = 1.11, 95% CI = [1.06, 1.16], P < .001), and greater total days prescribed (HR = 1.01, 95% CI = [1.00, 1.02], P = .041).Our national database study highlights the need for targeted screening of pediatric patients treated with high-dose corticosteroids. This investigation may inform multidisciplinary studies and interventions in children treated with corticosteroids.(1)Corticosteroid-associated osteonecrosis presents a risk for severe pain and joint collapse, yet little is known regarding which pediatric patients are at greatest risk across medical conditions.(2)Adjusting for other covariates, pediatric patients with acute lymphoblastic leukemia, systemic lupus erythematous, Crohn's disease, juvenile idiopathic arthritis, solid organ transplants, patients prescribed dexamethasone, patients prescribed corticosteroids for greater total days, and older patients were at increased risk for osteonecrosis in our national database study.(3)Our findings highlight the need for targeted screening of pediatric patients treated with high-dose corticosteroids.(4)Future prospective multidisciplinary screening and intervention protocols should be studied in children treated with corticosteroids.Level III: Case-control study or retrospective cohort study.
      https://www.ncbi.nlm.nih.gov/pubmed/40756153 https://doi.org/10.1016/j.jposna.2025.100199
      More

    • A dyad-based analysis of social support dynamics among adolescent/young adult cancer survivors and their parents from a predominately Hispanic/Latino, socioeconomically disadvantaged, and rural population.

      Lewinsohn, R. M., Benedict, C., Smith, M., Boynton, H., Schapira, L., Smith, S. M.

      Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

      ABSTRACT
      Social support can ameliorate the challenges faced by childhood cancer survivors and their parents as survivors transition into adulthood. This study examined social support dynamics within adolescent/young adult (AYA)-parent dyads by comparing their support needs and gaps.This qualitative study was conducted in collaboration with a community-based organization serving predominately socioeconomically disadvantaged, Hispanic/Latino (H/L), rural families affected by childhood cancer in California. English- and Spanish-speaking AYA childhood cancer survivors (≥ 15 years old, ≥ 5 years from diagnosis) and parents were interviewed. Transcripts were analyzed qualitatively using applied thematic analysis.Seven AYA-parent dyads (six H/L and bilingual or Spanish speaking only) were interviewed. AYAs (six male, one female) had a median (min-max) age of 19 (16-23) and were 14 years post-diagnosis (6-17). Forms of social support fell into emotional, instrumental (i.e., tangible assistance), and informational domains. Family and faith were shared sources of emotional support for parents and AYAs. Although AYAs identified parents as consistent sources of emotional support, parents frequently discussed inadequate family support and unmet emotional needs. Parents also more commonly discussed gaps in instrumental support. AYAs often lacked cancer-related knowledge, with parents serving as primary sources of informational support. Parents worried about children's readiness to transition to adult-focused survivorship care.Parents experienced gaps in emotional and instrumental support not noted by AYAs, suggesting parents help buffer these experiences. AYAs' reliance on parents for informational support in the post-treatment period highlights an opportunity to build upon supportive parent-AYA relationships through dyad-focused education to facilitate adult-focused survivorship care transitions.
      https://www.ncbi.nlm.nih.gov/pubmed/40591011 https://doi.org/10.1007/s00520-025-09706-0
      More

    • Retrospective Analysis and Characterization of Avascular Necrosis By Bone Location in Pediatric Leukemia/Lymphoma Patients.

      Alayleh, A., Naz, H., Taylor, V., Johnson, T. R., Farook, S., Hofmann, G., Obilo, C., Pham, N. S., Harbacheck, K., Laureano, T., Smith, S. M., Chao, K., Goodman, S. B., Shea, K. G.

      Journal of pediatric orthopedics

      ABSTRACT
      Avascular necrosis (AVN) is a serious complication of high-dose steroid therapy for pediatric patients with leukemia/lymphoma. AVN affects multiple bones and joints, leading to significant pain in different bone regions, early-onset osteoarthritis, and early joint replacement. Early detection and intervention for AVN may prevent pain and progressive joint collapse. The purpose of this study is to evaluate and characterize the specific AVN locations in a cohort of pediatric and adolescent patients with leukemia/lymphoma using the newly developed Bone Location for AVN from STeroids (BLAST) classification system that considers epiphyseal, metaphyseal, and diaphyseal locations in long bones.An imaging database was queried for patients 25 years old and younger with a diagnosis of AVN and leukemia/lymphoma who required steroid treatment. Patient MRIs were reviewed, and AVN sites were classified using the BLAST system. AVN locations were described using descriptive statistics. Multivariable logistic regression analysis was used to assess the odds of AVN bilaterality based on location.A total of 84 patients (49/35 males/females) with acute lymphoblastic leukemia (ALL) (B-cell 74%, T-cell 21%) or acute myeloid leukemia (5%) were included in this cohort. The median age was 14.8 years at leukemia diagnosis and 16.5 years at AVN diagnosis. Most AVN locations include the femur (87%), tibia (68%), and humerus (25%). On the basis of the BLAST classification, the most common sites of AVN overall include the proximal tibial metaphysis (61%), distal femoral metaphysis (60%) and epiphysis (60%), and femoral head epiphysis (50%). The most common sites of AVN in the tibia, humerus, and femur are proximal tibial metaphysis (89%), humeral head epiphysis (86%), and distal femoral metaphysis (68%) and epiphysis (68%), respectively.This analysis demonstrates that AVN in leukemia/lymphoma patients on steroid therapy has a clear predilection for specific locations in long bones. Using the BLAST classification, practitioners are better equipped to characterize the location of AVN, monitor high-risk locations for joint collapse, and track early outcomes of preventative treatment. The development of prospective multicenter AVN study groups and screening protocols for early detection will be critical to improve functional outcomes and joint preservation for leukemia/lymphoma survivors and all other patients taking high-dose steroids.Level II-retrospective cohort study.
      https://www.ncbi.nlm.nih.gov/pubmed/40214168 https://doi.org/10.1097/BPO.0000000000002963
      More

    • Cancer Survivorship at Stanford Cancer Institute.

      Smith, S. M., Steele, N., Kim, J., Yurkiewicz, I. R., Benedict, C., Trivedi, R., Heathcote, L. C., Simon, P. J., Bugos, K., Clayton, A., Palesh, O., Schapira, L.

      Journal of cancer survivorship : research and practice

      ABSTRACT
      The Stanford Cancer Survivorship Program is a key initiative of Stanford Cancer Institute. The program's mission is to improve the experience and outcomes of patients and family caregivers throughout all phases of the cancer trajectory by advancing survivorship research, clinical care, and education. The four pillars of the program include clinical care delivery with a focus on primary care-survivorship collaboration and expanding specialty services, education and training of healthcare professionals, transdisciplinary patient-oriented research, and community engagement. Cross-cutting areas of expertise include the following: (a) adolescents and young adults (AYAs), (b) mental health and patient self-management, (c) integration of primary care, and (d) postgraduate medical education. The clinical care model includes embedded survivorship clinics within disease groups in outpatient clinics, novel clinics designed to address unmet needs such as sexual health for women, and primary care-based faculty-led survivorship clinics for patients undergoing active cancer care requiring co-management, those who have completed active therapy and those at high risk for cancer due to genetic risk. Educational initiatives developed to date include an online course and medical textbook for primary care clinicians, a lecture series, monthly research team meetings, and rotations for medical trainees. Patient-facing activities include webinars and a podcast series designed to promote awareness, thus expanding the provision of expert-vetted information. Ongoing research focuses on oncofertility and family building after cancer, improving communication for AYAs, changing mindsets to improve quality of life through targeted digital interventions, increasing capacity to care for cancer survivors, and strengthening collaboration with community partners. IMPLICATIONS FOR CANCER SURVIVORS: Stanford's Cancer Survivorship Program includes a robust transdisciplinary and interdisciplinary research, training and clinical platform that is committed to advancing access and improving care for people living with and beyond cancer, through innovation in design and care delivery.
      https://www.ncbi.nlm.nih.gov/pubmed/38183579 https://doi.org/10.1007/s11764-023-01523-w
      More

    • Developing "The Health After Cancer Podcast" to amplify cancer survivors' voices through digital storytelling.

      Billman, E., Steele, N., Servino, K., Bumgardner, D., Walker, K., Smith, S. M., Schapira, L.

      Patient education and counseling

      ABSTRACT
      Cancer survivors experience complex medical and psychosocial challenges after a cancer diagnosis, leading to unmet informational and emotional needs. There is a paucity of cancer survivorship educational resources co-created by survivors and medical professionals.Our aim was to create an educational resource for cancer survivors, caregivers, and medical professionals that would leverage digital storytelling to address survivorship topics.Our content and production team included cancer survivors, clinicians, educators, and design experts. All content was co-created by cancer survivors and medical experts.We conducted an environmental scan of existing cancer survivorship educational resources in academic and public domains. Applying human-centered design principles, we incorporated patient perspectives through advisory board meetings and focus groups and identified a podcast as the preferred medium. We selected content and speakers, produced the podcast, and developed a corresponding website.Based on patient recommendations, podcast episodes address mental health, fear of cancer recurrence, relationships, parenting, relating to a new body, care transitions for adult survivors of childhood cancer, disclosing health information, and financial burden of cancer. Podcast guests were invited based on lived or learned experience in these domains. Thirteen guests (survivors, experts) and four hosts (two cancer survivors, two oncologists) co-created 15 podcast episodes. Podcast guests found the storytelling experience to be powerful and therapeutic.Digital storytelling is a scalable and accessible educational tool for communicating complex survivorship concepts that can amplify survivors' voices and increase awareness among survivors and clinicians. Co-creation of educational resources for cancer survivorship by survivors and professionals is a feasible and innovative educational strategy.A podcast created by and for cancer survivors in partnership with medical experts highlights opportunities for peer-to-peer digital storytelling to foster community among survivors and caregivers.Podcast production was supported by the Stanford Comprehensive Cancer Center.
      https://www.ncbi.nlm.nih.gov/pubmed/38350208 https://doi.org/10.1016/j.pec.2024.108194
      More

    • Impact of a Cancer Survivorship Continuing Medical Education Course on Learners' Attitudes and Intention to Change Practice.

      Jackson, K. K., Alberto, J., Kim, J., Smith, S. M., Schapira, L.

      Journal of cancer education : the official journal of the American Association for Cancer Education

      ABSTRACT
      An innovative, case-based continuing medical education course, Health After Cancer: Cancer Survivorship for Primary Care, was developed to engage clinicians in cancer survivorship care. A post-course survey measured the educational impact of the course on learners' intentions to change practice and changes in attitudes related to interprofessional collaborative practice. Qualitative analysis of free text responses was performed using the immersion-crystallization method. Learners earning continuing education credit (N = 1202) completed the post-course evaluation survey: 17.4% physicians, 8.0% advanced practice providers, 56.7% nurses, 2.2% pharmacists, 15.7% other health professionals. Learners' intended practice changes included improving communication (N = 438), incorporating knowledge into practice (N = 282), prioritizing survivorship clinical care (N = 167), and increasing oncology-primary care collaboration for patients (N = 53). Responses frequently involved more than one theme. Specific actions or knowledge that learners intended to incorporate into practice included improving their assessment of cancer survivor's risk and concerns (N = 128), incorporating knowledge of late effects of cancer treatment into practice (N = 122), educating patients about survivorship topics (N = 117), increasing empathy and understanding of survivors' experiences (N = 94), improving listening skills (N = 70), and dedicating more time to survivorship care (N = 63). Learners' changes in attitudes reflected an increased appreciation for collaboration, especially between oncology and primary care clinicians. A continuing medical education course designed to drive interest in engaging with cancer survivorship topics was effective at shaping learners' attitudes and intent to change practice, and has the potential to improve communication, care coordination, and healthcare experiences of cancer survivors.
      https://www.ncbi.nlm.nih.gov/pubmed/39235548 https://doi.org/10.1007/s13187-024-02497-8
      More

    • Social support dynamics within parent-AYA cancer survivor dyads in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

      Lewinsohn, R. M., Benedict, C., Smith, M., Boynton, H., Schapira, L., Smith, S. M.

      ABSTRACT
      The Stanford Cancer Survivorship Program is a key initiative of Stanford Cancer Institute. The program's mission is to improve the experience and outcomes of patients and family caregivers throughout all phases of the cancer trajectory by advancing survivorship research, clinical care, and education. The four pillars of the program include clinical care delivery with a focus on primary care-survivorship collaboration and expanding specialty services, education and training of healthcare professionals, transdisciplinary patient-oriented research, and community engagement. Cross-cutting areas of expertise include the following: (a) adolescents and young adults (AYAs), (b) mental health and patient self-management, (c) integration of primary care, and (d) postgraduate medical education. The clinical care model includes embedded survivorship clinics within disease groups in outpatient clinics, novel clinics designed to address unmet needs such as sexual health for women, and primary care-based faculty-led survivorship clinics for patients undergoing active cancer care requiring co-management, those who have completed active therapy and those at high risk for cancer due to genetic risk. Educational initiatives developed to date include an online course and medical textbook for primary care clinicians, a lecture series, monthly research team meetings, and rotations for medical trainees. Patient-facing activities include webinars and a podcast series designed to promote awareness, thus expanding the provision of expert-vetted information. Ongoing research focuses on oncofertility and family building after cancer, improving communication for AYAs, changing mindsets to improve quality of life through targeted digital interventions, increasing capacity to care for cancer survivors, and strengthening collaboration with community partners. IMPLICATIONS FOR CANCER SURVIVORS: Stanford's Cancer Survivorship Program includes a robust transdisciplinary and interdisciplinary research, training and clinical platform that is committed to advancing access and improving care for people living with and beyond cancer, through innovation in design and care delivery.
      https://www.ncbi.nlm.nih.gov/pubmed/38183579 https://doi.org/10.1007/s11764-023-01523-w
      More

    • HEALTH AFTER CANCER: A CONTINUING MEDICAL EDUCATION COURSE TO PREPARE CLINICIANS TO CARE FOR CANCER SURVIVORS

      Jackson, K., Alberto, J., Smith, S. M., Schapira, L., Kim, J.

      ABSTRACT
      Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices.196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively.Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.
      https://www.ncbi.nlm.nih.gov/pubmed/36800566 https://doi.org/10.1200/OP.22.00630
      More

    • Understanding unmet needs of adult survivors of childhood cancer in California's Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment

      Smith, S. M., Pecos-Duarte, C., Ariceaga, E., Billman, E., Teer, A., Benedict, C., Smith, M., Montes, S., Rivera, E., Ramirez, D., Boynton, H., Schapira, L.

      ABSTRACT
      Clinical pathways are evidence-based tools that have been integrated into many aspects of pediatric hospital medicine and have proven effective at reducing in-hospital complications from a variety of diseases. Adaptation of similar tools for specific, high-risk patient populations in pediatric oncology has been slower, in part due to patient complexities and variations in management strategies. There are few published studies of clinical pathways for pediatric oncology patients. Pediatric patients with a new diagnosis of leukemia or lymphoma often present with one or more "oncologic emergencies" that require urgent intervention and deliberate multidisciplinary care to prevent significant consequences. Here, we present two clinical pathways that have recently been developed using a multidisciplinary approach at a single institution, intended for the care of patients who present with hyperleukocytosis or an anterior mediastinal mass. These clinical care pathways have provided a critical framework for the immediate care of these patients who are often admitted to the pediatric intensive care unit for initial management. The goal of the pathways is to facilitate multidisciplinary collaborations, expedite diagnosis, and streamline timely treatment initiation. Standardizing the care of high-risk pediatric oncology patients will ultimately decrease morbidity and mortality associated with these diseases to increase the potential for excellent outcomes.
      https://www.ncbi.nlm.nih.gov/pubmed/36523979 https://doi.org/10.3389/fonc.2022.1033993
      More

    • Crucial Role of Effective Communication in Recruiting Immigrant Patients Into Cancer Clinical Trials.

      Schapira, L., Smith, S. M.

      JCO oncology practice

      ABSTRACT
      Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices.196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively.Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.
      https://www.ncbi.nlm.nih.gov/pubmed/37782883 https://doi.org/10.1200/OP.23.00522
      More

    • Leveraging a community-academic partnership to evaluate the needs of Latinx AYA cancer survivors

      Smith, S. M., Teer, A., Ariceaga, E., Billman, E., Goyal, A., Benedict, C., Pecos-Duarte, C., Smith, M., Montes, S., Luna, E., Ramirez, D., Boynton, H., Schapira, L.

      ABSTRACT
      Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices.196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively.Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.
      https://www.ncbi.nlm.nih.gov/pubmed/36800566 https://doi.org/10.1200/OP.22.00630
      More

    • Implementation of a Pilot Clinic for Pediatric to Adult Cancer Survivorship Transitions.

      Jin, A. H., Simon, P. J., Clayton, A., Benedict, C., Liedtke, M., Muffly, L., Schapira, L., Smith, S. M.

      Journal of adolescent and young adult oncology

      ABSTRACT
      Childhood cancer survivors are recommended to have lifelong survivorship care, yet many become disengaged during pediatric to adult care transitions. We implemented a pilot clinic for adult survivors of pediatric or adolescent and young adult (AYA) leukemia transitioning to adult-focused survivorship care. The clinic featured AYA-specific care, bidirectional communication with primary care, and a quality improvement (QI) cycle. During the 1-year QI period, 27 patients were seen and 21 completed postvisit interviews. The clinic was positively received by patients and primary care providers, showed promise for improving self-management and care coordination, and highlighted the need for novel approaches to connect survivors with primary care.
      https://www.ncbi.nlm.nih.gov/pubmed/37615593 https://doi.org/10.1089/jayao.2023.0041
      More

    • Predictors of cancer center-based follow-up among pediatric and adolescent/young adult cancer survivors

      Pang, E., Smith, S. M., Saynina, O., Schapira, L., Chamberlain, L. J.

      ABSTRACT
      This study investigates the resources used by childhood cancer survivors (CCS) to learn about their cancer histories and evaluates if CCS feel these resources prepare them to manage their health needs as young adults. Young adult participants (aged 18-30 years) were diagnosed with cancer at ≤ 10 years and recruited by word of mouth and from social media and/or non-profit organizations and completed semi-structured interviews. A descriptive thematic analysis guided by an essentialist/realist paradigm combined inductive and deductive approaches to identify key themes. Fourteen participants were interviewed, and six key themes were identified: (1) CCS are aware of general cancer history (age at diagnosis, treating hospital, cancer type), (2) CCS are unaware of treatment regimen (medications and duration), (3) CCS want to learn more about their treatment regimens and (4) potential late effects of treatment, (5) CCS use diverse resources to learn about their cancer histories and potential late effects, and (6) survivors' interests to learn about their cancer histories change over time. Limited knowledge of their cancer treatments leaves some CCS unprepared to manage their health needs as young adults or to address potential risk of late effects. CCS recognize their limited knowledge, but the resources available to them fall short of their information needs. Identifying the shortcomings of resources used by CCS provides evidence for how resources need to be improved to meet survivors' cancer education needs.
      https://www.ncbi.nlm.nih.gov/pubmed/36456891 https://doi.org/10.1007/s13187-022-02240-1
      More

    • A qualitative study of childhood cancer families' post-treatment needs and the impact of a community-based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

      Smith, S. M., Teer, A., Tolamatl Ariceaga, E., Billman, E., Benedict, C., Goyal, A., Pang, E. M., Pecos-Duarte, C., Lewinsohn, R., Smith, M., Boynton, H., Montes, S., Rivera, E., Ramirez, D., Schapira, L.

      Pediatric blood & cancer

      ABSTRACT
      Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference.We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners.Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication.Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.
      https://www.ncbi.nlm.nih.gov/pubmed/38053230 https://doi.org/10.1002/pbc.30798
      More

    • Racism and health among cancer survivors.

      Smith, S. M., Schapira, L.

      Cancer

      ABSTRACT
      Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices.196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively.Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.
      https://www.ncbi.nlm.nih.gov/pubmed/37489767 https://doi.org/10.1002/cncr.34963
      More

    • International Survey of Pediatric Oncologists' Beliefs and Communication Practices Regarding Symptom Self-Monitoring by Childhood Cancer Survivors.

      Webster, S. N., Spunt, S. L., Cunningham, S. J., Wakefield, C. E., Smith, S. M., Alberts, N. M., Palesh, O., Simons, L. E., Heathcote, L. C.

      JCO oncology practice

      ABSTRACT
      Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices.196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively.Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.
      https://www.ncbi.nlm.nih.gov/pubmed/36800566 https://doi.org/10.1200/OP.22.00630
      More

    • Cancer center-based follow-up among pediatric and adolescent/young adult cancer survivors: the role of a community-based organization and the social determinants of health.

      Pang, E. M., Saynina, O., Schapira, L., Wise, P. H., Boynton, H., Smith, M., Chamberlain, L. J., Smith, S. M.

      Journal of cancer survivorship : research and practice

      ABSTRACT
      Adherence to survivorship care is suboptimal among pediatric and adolescent/young adult (AYA) cancer survivors. We evaluated predictors of cancer center-based follow-up among pediatric/AYA cancer survivors, with an emphasis on social determinants of health (SDOH).This retrospective cohort study used electronic health record data at an academic medical center to identify patients aged 0-29 years at last cancer treatment who completed treatment 2010-2019. Cancer center-based follow-up was defined by oncology or survivorship clinic visits through 12/31/2022. Multivariate logistic regression models (overall, ages 0-19 [pediatric], 20-29 [YA]) evaluated the association of demographics, clinical/treatment characteristics, and SDOH (insurance type, distance to cancer center, area deprivation index) with clinic attendance. Further modeling accounted for the service area of a community-based organization (CBO) that supports families of children with cancer.A total of 2210 survivors were included (56% pediatric, 44% YA; 66% non-White). Cancer center-based follow-up decreased from 94% 1-year post-treatment to 35% at > 5-7 years. In adjusted analysis, AYAs had the lowest follow-up (5-7 years post-treatment: OR 0.25 [0.15-0.41] for age 25-29; OR 0.25 [0.16-0.41] for age 20-24; OR 0.32 [0.20-0.52] for age 15-19). Survivors residing within the CBO service area were twice as likely to follow-up (OR 2.10 [1.34-3.29]).Among a diverse population, AYA survivors were vulnerable to loss to follow-up. Other SDOH were not consistently associated with follow-up. Support from a CBO may partly explain these findings.CBOs may strengthen survivorship follow-up within medically underserved communities. More research is needed to understand community support in survivorship.
      https://www.ncbi.nlm.nih.gov/pubmed/37792162 https://doi.org/10.1007/s11764-023-01463-5
      More

    • When Breasts Become a Liability-Discussing Risk-Reducing Mastectomy With Individuals Following Chest Irradiation for Childhood Cancer.

      Smith, S. M., May, D. G., Link, M. P.

      JAMA oncology

      ABSTRACT
      This study investigates the resources used by childhood cancer survivors (CCS) to learn about their cancer histories and evaluates if CCS feel these resources prepare them to manage their health needs as young adults. Young adult participants (aged 18-30 years) were diagnosed with cancer at ≤ 10 years and recruited by word of mouth and from social media and/or non-profit organizations and completed semi-structured interviews. A descriptive thematic analysis guided by an essentialist/realist paradigm combined inductive and deductive approaches to identify key themes. Fourteen participants were interviewed, and six key themes were identified: (1) CCS are aware of general cancer history (age at diagnosis, treating hospital, cancer type), (2) CCS are unaware of treatment regimen (medications and duration), (3) CCS want to learn more about their treatment regimens and (4) potential late effects of treatment, (5) CCS use diverse resources to learn about their cancer histories and potential late effects, and (6) survivors' interests to learn about their cancer histories change over time. Limited knowledge of their cancer treatments leaves some CCS unprepared to manage their health needs as young adults or to address potential risk of late effects. CCS recognize their limited knowledge, but the resources available to them fall short of their information needs. Identifying the shortcomings of resources used by CCS provides evidence for how resources need to be improved to meet survivors' cancer education needs.
      https://www.ncbi.nlm.nih.gov/pubmed/37471071 https://doi.org/10.1001/jamaoncol.2023.2303
      More
see all 58 publications