Silvia Rivas - Academia.edu (original) (raw)

Papers by Silvia Rivas

JCO Global Oncology

PURPOSE Surveys to assess patient and family experiences of pediatric cancer care have been prima... more PURPOSE Surveys to assess patient and family experiences of pediatric cancer care have been primarily developed and validated in high-income Western settings with English-speaking participants. However, 90% of children with cancer live in low- and middle-income countries. We sought to develop a survey focused on pediatric cancer communication for use in a low-literacy population in Guatemala, including adaptation of many previously validated items. METHODS A multidisciplinary team developed a quantitative survey on the basis of a theoretical model of important components and influences on pediatric cancer communication. The original survey included established items previously used in high-income settings and novel questions designed for this study. The survey was translated into Spanish and pilot tested with parents of children receiving treatment at Unidad Nacional de Oncologia Pediatrica in Guatemala City, Guatemala, from April-June 2019. Cognitive interviews were used during pil...

Revista Arrupe, Jul 1, 2021

Journal of Global Oncology, 2016

59 Background: Abandonment of therapy is a major cause of therapeutic failure in the treatment of... more 59 Background: Abandonment of therapy is a major cause of therapeutic failure in the treatment of childhood cancer in Low and Middle Income Countries (LMIC). This study examines factors associated with increased risk of therapy abandonment in Guatemalan children with cancer and the rates of therapy abandonment before and after implementation of a multidisciplinary psychosocial intervention program. Methods: A retrospective population-based study was performed to identify risk factors for abandonment of therapy in Guatemalan children, ages 0-18, with cancer who were seen at UNOP from 2001-2008. Patient data was collected from the Pediatric Oncology Networked Database (POND4Kids). Abandonment was defined as a lapse of 4 weeks in planned treatment or failure to begin treatment for a potentially curable cancer. Cox proportional hazards analysis identified the effect of age, sex, year of diagnosis, distance travelled to UNOP, ethnicity, and principal diagnosis on abandonment of therapy. ...

JCO Global Oncology, 2021

PURPOSE Although > 90% of children with cancer live in low- and middle-income countries, littl... more PURPOSE Although > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication. METHODS A cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala. RESULTS Guatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and lat...

Pediatric Blood & Cancer, Apr 19, 2017

Background: Treatment refusal and abandonment are major causes of treatment failure for children ... more Background: Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low-and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. Methods: This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival.

Lancet Oncology, Aug 1, 2011

Children, 2021

Palliative care offers children who have life-limiting and life-threatening oncologic illnesses a... more Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.

Pediatric Blood & Cancer, Sep 21, 2013

JAMA Network Open

ImportanceEarly integration of pediatric palliative care (PPC) for children with cancer is critic... more ImportanceEarly integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood.ObjectivesTo evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America.Design, Setting, and ParticipantsThe Assessing Doctors’ Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America.Main Outcomes and MeasuresThe ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previou...

Cancer Epidemiology, Biomarkers & Prevention, 2021

Purpose: Ninety percent of children with cancer live in low- and middle-income countries, and few... more Purpose: Ninety percent of children with cancer live in low- and middle-income countries, and fewer than 40% survive. In these countries, rates of treatment abandonment can be up to 50-60%, contributing to the mortality gap. Fatalistic cancer beliefs may lead to delayed diagnosis and poor outcomes, including treatment abandonment. This study explored the evolution of Guatemalan parents' cancer beliefs during initial pediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs. Methods: Twenty families of children with cancer were included in this study. We audio-recorded initial psychosocial and diagnostic conversations between parents, psychologists, and oncologists, then conducted semi-structured interviews with parents. Audio-recordings were transcribed and translated from Spanish into English and thematically analyzed. Results: Guatemalan parents' beliefs evolve as they learn about cancer through various sources. Sources of in...

JAMA Network Open, 2022

IMPORTANCE The World Health Organization (WHO) designates early integration of palliative care as... more IMPORTANCE The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resourcelimited settings, underlying physician perceptions may also impede early integration of PPC in cancer care. OBJECTIVE To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer. DESIGN, SETTING, AND PARTICIPANTS This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts. MAIN OUTCOMES AND MEASURES The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data. RESULTS A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC. CONCLUSION AND RELEVANCE Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in (continued) Key Points Question What are the perceptions among physicians caring for children with cancer in Latin America on the integration of palliative care? Findings In this survey study of 874 physicians from 17 countries in Latin America, physicians' understanding of palliative care was generally aligned with World Health Organization guidance, but their comfort level in providing palliative care to patients and families was low. Meaning The findings suggest that opportunities exist for improving physician training in symptom management and emotional support for children with cancer and their families.

BMJ Global Health, 2021

IntroductionFatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, incl... more IntroductionFatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, including treatment abandonment, for children with cancer. This study explored Guatemalan parents’ cancer beliefs during initial paediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs.MethodsTwenty families of children with cancer were included in this study. We audio-recorded psychosocial conversations with psychologists and diagnostic conversations with oncologists, then conducted semi-structured interviews with parents to explore the evolution of their cancer beliefs. Audio-recordings were transcribed and translated from Spanish into English, with additional review in both languages by bilingual team members. All 60 transcripts were thematically analysed using a priori and novel codes.ResultsGuatemalan parents’ beliefs evolve as they learn about cancer through various sources. Sources of information external to the cancer centre, includi...

Pediatric Blood & Cancer, 2019

Background: At least 80% of children with cancer live in low-and middle-income countries where th... more Background: At least 80% of children with cancer live in low-and middle-income countries where the prevalence of malnutrition and socioeconomic disadvantage is high. We examined the relationship between nutritional status (NS), assessed by arm anthropometry, and socioeconomic status (SES) in children diagnosed with cancer at Unidad Nacional de Oncologia Pediatrica (UNOP) in Guatemala over a three-year period. Method: Patients aged 0 to 18 years of age diagnosed between January 2015 and December 2017 were included. NS was evaluated by mid-upper arm circumference, triceps skin fold thickness, and serum albumin level, and subjects were classified as adequately nourished, moderately depleted, and severely depleted nutritionally. SES was measured by a 15-item instrument developed at UNOP. Results: Of 1365 patients diagnosed in the study period, 1060 (78%) fulfilled the eligibility criteria. Only 6% of patients were classified as medium to high, the remainder as medium-low to extremely low SES. Almost 47% were severely depleted at diagnosis, 19% moderately depleted, and 34% adequately nourished. SES was shown to be a determinant of NS; with progressively lower SES, the probability of a decline in NS increased by a factor of 1.04 points (P < 0.0001). Leukemia and lymphoma were also important predictors of nutritional depletion with odds ratios of 6.08 (95% CI, 1.74-28.28; P = 0.008) for leukemias and 4.83 (95% CI, 1.33-23.03; P = 0.03) for lymphomas. Conclusion: Both low SES and a diagnosis of leukemia or lymphoma are strong predictors of poor NS at diagnosis in children with cancer in Guatemala.

Pediatric Blood & Cancer, 2014

Pediatric blood & cancer, Jan 19, 2017

Treatment refusal and abandonment are major causes of treatment failure for children with cancer ... more Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low- and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival. Of 1,789 patients, 21% refused or abandoned treatment. Abandonment decreased from 27% in 2001 to 7% in 2008 following the implementation of medicina integra...

Rev Cuba Med, Sep 1, 1987

Rev Med Hosp Gen Mex, Mar 1, 1995

Avaliacao Psicologica, Aug 1, 2014