Arthur R Ablin’s research while affiliated with University of California, San Francisco and other places

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Publications (23)


Palliative Treatment: Redefining Interventions To Treat Suffering Near the End of Life
  • Article
  • Full-text available

June 2010

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181 Reads

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15 Citations

Journal of Palliative Medicine

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Arthur R Ablin

The treatment of suffering is now recognized as an essential component of medical care. By referring to this treatment as "palliative care," however, we diminish its importance. In this essay, we propose a shift in our conception of the treatment of suffering and advocate for the use of a new term: "palliative treatment." We argue that the word "treatment" is more appropriate than "care" because the interventions we employ are evidence-based, goal-directed, and effective in diminishing suffering. We articulate that this alteration in terminology is necessary because it facilitates patient and physician understanding of the importance and efficacy of palliative treatment interventions. We enumerate four distinct forms of suffering that each requires treatment: physical, psychological, existential, and spiritual. Finally, we argue that in rare cases when aggressive palliative treatment has been unsuccessful in diminishing suffering to a degree that is bearable, allowing death to occur unimpeded may be viewed as therapeutic because in death the patient's suffering is finally ended.

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Optimal care for the child with cancer: A summary statement from the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology

July 2009

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80 Reads

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51 Citations

Pediatric Blood & Cancer

John J Spinetta

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Since its foundation in 1991, the SIOP Working Committee on Psychosocial Issues in Paediatric Oncology1 has developed and published 12 sets of Guidelines for health-care professionals treating children with cancer and their families. Those elements considered essential in the process of cure and care of children with cancer are summarized in this document as a formal statement, developed at the 2007 SIOP annual meeting in Mumbai. Elaboration of the concepts with detailed strategies for practice can be found in the referenced guidelines [1-12] and in a companion publication [13]. This article is a summary of what practitioners considered critical elements in the optimal care of the child with cancer, with the goal of stimulating a broader application of these elements throughout the SIOP membership.



Conducting a Qualitative Culture Study of Pediatric Palliative Care

January 2009

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207 Reads

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34 Citations

While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.


Survival after recurrence of osteosarcoma: A 20-year experience at a single institution

September 2006

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89 Reads

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53 Citations

Pediatric Blood & Cancer

Approximately one-third of patients with osteosarcoma who have a complete response to their initial treatment can be expected to relapse. It is important to define what host, tumor, or treatment characteristics determine outcome after relapse. We present findings in 59 patients treated at our institution from 1974 to 1996 who have relapsed one or more times after their initial response. Host and tumor characteristics at diagnosis and relapse, therapeutic interventions and survival outcomes were determined from examination of medical records and a follow-up questionnaire. Of the 59 patients, 37 initially presented with localized disease of the extremity, 11 with localized non-extremity disease, and 11 with metastatic disease. This report focuses on those with localized disease of the extremity. For these patients, median time from original diagnosis to first recurrence was 14 months. Median survival after first recurrence was 31 months. The median post initial relapse survival was the same for patients whose first relapse occurred before or after 14 months from original diagnosis. Seventeen of 29 patients with systemic metastasis at first recurrence had complete removal of their disease and had a median post-op survival of 2.5 years, while the remaining 12 patients with no surgery, had a median survival of 2 years. Of the 37 patients who presented with primary disease only in the extremities and relapsed: 31 died (2 more than 6 years from first recurrence) and 6 are alive from 6 to 24 years from first recurrence (5 without disease and 1 with disease). Three of the five disease-free survivors had three or more relapses. With a long follow-up time, we found 15% of patients with relapsed osteosarcoma who originally presented with localized disease in the extremity are alive with no evidence of disease at 10 years from first recurrence (Kaplan-Meier estimate). Even patients with multiple relapses may have long-term disease-free survival after salvage therapy. Chemotherapy and time to first recurrence were unrelated to survival after relapse in this study. Complete surgical removal of metastatic disease may be important for long-term survival.


Surviving childhood cancer: the impact on life

February 2006

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22 Reads

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11 Citations

Paediatric Drugs

With modern therapies, most children diagnosed with cancer are expected to reach adulthood. Therefore, there are large and ever-increasing numbers of children and young adults in our population who are survivors of childhood cancer. Many of the therapies responsible for improved cancer survival rates can also damage normal cells and tissues. As more children survive cancer, the physical and emotional costs of enduring cancer therapy become increasingly important. Although most childhood cancer survivors are now expected to survive, they remain at risk for relapse, second malignant neoplasms, organ dysfunction, and a negative psychologic impact. Individual risk is quite variable and is dependent on multiple factors including the type and site of cancer, the therapy utilized, and the individual's constitution. The risks are likely to change as we learn more about the specific long-term effects of cancer therapy, develop more refined and targeted therapies, and develop and apply more effective preventative strategies or therapeutic interventions. Guidelines for long-term follow-up have been established and are available to help facilitate appropriate monitoring of and care for potential late effects.


Health Insurance Coverage in Survivors of Childhood Cancer: The Childhood Cancer Survivor Study

January 2006

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22 Reads

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106 Citations

Journal of Clinical Oncology

To examine the prevalence and predictors of health insurance coverage and the difficulties obtaining coverage in a large cohort of childhood cancer survivors. This study included 12,358 5-year survivors of childhood cancer and 3,553 sibling controls participating in the Childhood Cancer Survivor Study. Data were collected by surveys distributed in 1994 (baseline) and 2000 (follow-up). At baseline, 83.9% of adult survivors, compared with 88.3% of siblings, had health insurance coverage (P < .01); 6 years later, small but significant survivor-sibling differences remained (88% v 91%; P < .01). Twenty-nine percent of survivors reported having had difficulties obtaining coverage, compared with only 3% of siblings (P < .01). In multivariate analysis of survivors 18 years of age or older, factors associated with being uninsured included younger age at diagnosis (diagnosis age of 0 to 4 years; odds ratio [OR] = 1.7; 95% CI, 1.3 to 2.2), male sex (OR = 1.3; 95% CI, 1.2 to 1.5), age at baseline survey (age 22 to 24 years; OR = 1.6; 95% CI, 1.2 to 2.1), lower level of attained education (less than high school, OR = 2.6, 95% CI, 2.1 to 3.3; high school graduate, OR = 2.1, 95% CI, 1.8 to 2.5), income less than 20,000 dollars (OR = 5.6, 95% CI, 4.5 to 7.1), marital status (widowed/divorced/separated; OR = 1.3; 95% CI, 1.1 to 1.6), smoking status (current smoker, OR = 2.0, 95% CI, 1.7 to 2.3; former smoker, OR = 1.4, 95% CI, 1.2 to 1.8), and treatment that included cranial radiation (OR = 1.3, 95% CI, 1.0 to 1.6). Compared with siblings, adult survivors of childhood cancer had significantly lower rates of health insurance coverage and more difficulties obtaining coverage. Since lack of coverage likely has serious health and financial implications for this at-risk population, any disparity in availability and quality of coverage is of great concern.


Minority Adult Survivors of Childhood Cancer: A Comparison of Long-Term Outcomes, Health Care Utilization, and Health-Related Behaviors From the Childhood Cancer Survivor Study

October 2005

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83 Reads

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97 Citations

Journal of Clinical Oncology

To determine the influence of race/ethnicity on outcomes in the Childhood Cancer Survivor Study (CCSS). Of CCSS adult survivors in the United States, 443 (4.9%) were black, 503 (5.6%) were Hispanic and 7,821 (86.6%) were white. Mean age at interview, 26.9 years (range, 18 to 48 years); mean follow-up, 17.2 years (range, 8.7 to 28.4 years). Late mortality, second malignancy (SMN) rates, health care utilization, and health status and behaviors were assessed for blacks and Hispanics and compared with white survivors. Late mortality rate (6.5%) and 15-year cumulative incidence of SMN (3.5%) were similar across racial/ethnic groups. Minority survivors were more likely to have lower socioeconomic status (SES); final models were adjusted for income, education, and health insurance. Although overall health status was similar, black survivors were less likely to report adverse mental health (females: odds ratio [OR], 0.6; 95% CI, 0.4 to 0.9; males: OR, 0.5; 95% CI, 0.3 to 0.8). Differences in health care utilization and behaviors noted: Hispanic survivors were more likely to report a cancer center visit (females: OR, 1.5; 95% CI, 1.1 to 2.0; males: OR, 1.7; 95% CI, 1.2 to 2.3); black females were more likely (OR, 1.6; 95% CI, 1.1 to 2.4), and Hispanic females less likely to have a recent Pap smear (OR, 0.7; 95% CI, 0.5 to 1.0); black and Hispanic survivors were less likely to report smoking; black survivors were less likely to report problem drinking. Adjusted for SES, adverse outcomes in CCSS were not associated with minority status. Importantly, black survivors reported less risky behaviors and better preventive practices. Hispanic survivors had equitable access to cancer related care.


Differences in pediatric oncologists' estimates of curability and treatment recommendations for patients with advanced cancer: Response

September 2005

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15 Reads

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9 Citations

Pediatric Blood & Cancer

When goals of therapy for children with advanced cancer are called into question, physician recommendations regarding treatment goals have been shown to be important for families. However, there has been no demonstration of the degree of variation between pediatric oncologists' recommendations in such situations. We provided 48 pediatric oncologists with two identical case histories and identical prognostic data from the literature. Individual interviews were then performed to assess variation in (1) recommended treatment goal, (2) perceived chances for cure, and (3) degree to which further curative intervention would be considered desirable for each patient. There was a large variability in each of the areas examined. For both patients, there was wide divergence (2:1 and 2:3) in whether to recommend cure as the goal of treatment. There were also differences in physician estimates for likelihood of cure for each patient. Finally, even among those with identical estimates for likelihood of cure, there were differences in the treatment goals physicians would recommend and how strongly they would counsel for them. This study demonstrates that even with identical clinical data and prognostic evidence from the literature, pediatric oncologists vary widely in their recommendations regarding goals of treatment for children with advanced cancer.



Citations (20)


... Percentages were reported mainly in publications from the US with elective health insurance. Reported health insurance coverage rates for adult CACS in the US ranged between 80 and 90% [5,40,53,60,64,65,69]. Nonetheless, compared to siblings, survivors were more likely to report underinsurance and less likely to perceive their coverage as stable [51]. ...

Reference:

Insurance, legal, and financial hardships of childhood and adolescent cancer survivors—a systematic review
Education, employment, insurance, and marital status among 694 survivors of pediatric lower extremity bone tumors: A report from the Childhood Cancer Survivor Study
  • Citing Article
  • May 2003

... Palliative Care (PC) is as integrated care model in health services, which seeks to promote dignity and improve the quality of life and well-being of patients and families facing chronic and progressive life-threatening illnesses (Neto, 2021). According to the World Health Organization (World Health Organization [WHO], 2002) and the Strategic Plan for the Development of Palliative Care (2021)(2022), the main objective of PC is to prevent and alleviate suffering, rooted in a multidisciplinary, global and holistic approach and multiple dimensions (physical, psychological, social, spiritual, and existential), through the early identification and treatment of pain or other physical, psychosocial and spiritual needs (Associação Portuguesa de Cuidados Paliativos, 2017;European Association Palliative Care, 2018;Kon & Ablin, 2010;Neto, 2017;Ordem dos Psicólogos Portugueses [OPP], 2019). ...

Palliative Treatment: Redefining Interventions To Treat Suffering Near the End of Life

Journal of Palliative Medicine

... A majority of these procedures involve intravenous access, feeding access, or tracheostomy placement for mechanical ventilation. Despite advances in pediatric palliative care, parents report that they do not feel that their children's symptoms are being controlled well at the end of life (9)(10)(11)(12)(13). One study highlighted the magnitude and often short time from invasive procedures to the time of death experienced by some children (14). ...

It's not palliative care, it's palliative treatment
  • Citing Article
  • March 2009

The Lancet Oncology

... Approximately 11% of children with cancer die from their disease, but little is known about the barriers surrounding end of life communication or how best to support these conversations among caregivers and their terminally ill child. Evidence-based guidelines for best practices and optimal care in oncology recommend open physician communication that is maintained and improved near the end of life (Jankovic et al., 2008;Spinetta et al., 2009;Wiener et al., 2015). Previous work has proposed that providers support caregivers in their endeavors to discuss end of life with their child (Himelstein et al., 2004;Jalmsell et al., 2015). ...

Optimal care for the child with cancer: A summary statement from the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology
  • Citing Article
  • July 2009

Pediatric Blood & Cancer

... A bi-cultural (or bi-lingual) worker is a research assistant who will be employed to work on the research project to overcome linguistic barriers in cross-cultural research (Shklarov, 2007;Hennink, 2008;Davies et al., 2009;Salma et al., 2017;Stevano & Deane, 2019;O'Rourke et al., 2022). Bi-cultural researchers share not only the language with the participants but also many social and cultural aspects. ...

Conducting a Qualitative Culture Study of Pediatric Palliative Care

... B-cell as well as T-cell recovery is probably functional, as normal levels of IgM and IgA and a normal response of lymphocytes to T-and B-cell mitogens have been demonstrated after CBT (Locatelli et al, 1996;Abu-Ghosh et al, 1999;Knutsen & Wall, 1999;Thomson et al, 2000). Most data on immune reconstitution after stem cell transplantation in children are on TCD bone marrow grafts (Cowan et al, 1987;Daley et al, 1987;Foot et al, 1993;Kook et al, 1996;Small et al, 1999). The detailed analysis of Kook et al (1996) on immune reconstitution after TCD BMT in 102 children reported normalization (defined as . ...

Lymphocyte reconstitution in children receiving soybean agglutinin T-depleted bone marrow transplants
  • Citing Article
  • March 1987

Transplantation Proceedings

... The locus contains the RB1 RBL gene, a tumor suppressor gene originally isolated by Friend et al. (15). LOH is caused by either deletion of the chromosomal locus (16) or mutation of the RB1 gene (17), and is detected not only in RBL but also in other malignancies such as osteosarcoma (18), breast cancer (19) and small cell lung cancer (20). Hereditary RBL patients are at an increased risk of developing osteosarcomas (7,21). ...

Location of the retinoblastoma susceptibility gene(s) and the human esterase D Locus
  • Citing Article
  • May 1984

Journal of Medical Genetics

... Despite a relatively homogeneous MRI pattern, the clinical picture of ND-LCH is very heterogeneous, ranging from mild to severe neurological impairment, including tremor, abnormal osteotendinous reflexes, spasticity, gait disturbance up to severe ataxia, cognitive and psychiatric symptoms (3,4,(15)(16)(17)(18). Not all patients with imaging findings suggestive of ND-LCH develop clinical symptoms, even many years after the initial diagnosis (3).Despite all efforts made over the last 20 years to better understand epidemiology, risk factors and pathogenesis of ND-LCH, an effective treatment is still lacking. ...

Disease course and late sequelae of Langerhans' cell Histiocytosis: 25- year experience at the University of California, San Francisco
  • Citing Article
  • August 1996

Journal of Clinical Oncology

... members. [5][6][7] Guidelines and recommendations regarding psychosocial care and communication in pediatric oncology have been available for many years, [8][9][10] but there are few scientifically evaluated psychosocial interventions. A systematic review 11 found that only 2 of 173 interventions in pediatric oncology included siblings. ...

SIOP Working Committee on psychosocial issues in pediatric oncology: Guidelines for communication of the diagnosis
  • Citing Article
  • June 1997

Medical and Pediatric Oncology

... members. [5][6][7] Guidelines and recommendations regarding psychosocial care and communication in pediatric oncology have been available for many years, [8][9][10] but there are few scientifically evaluated psychosocial interventions. A systematic review 11 found that only 2 of 173 interventions in pediatric oncology included siblings. ...

Guidelines for a therapeutic alliance between families and staff: A report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology
  • Citing Article
  • April 1998

Medical and Pediatric Oncology