Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study.

OBJECTIVES: To examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala. SETTING: This study was conducted at Guatemala's National Pediatric Cancer Center in Guatemala City. PARTICIPANTS: Spanish-speaking parents of paediatric patients (≤18 years of age) diagnosed with any form of cancer within the 8 weeks prior to study enrolment. The quantitative portion of this study included 100 parent participants; the qualitative component included 20 parents. Most participants were Catholic or Evangelical Spanish-speaking mothers. OUTCOMES: Priorities and experiences of cancer treatment decision-making including decision-making role and experienced regret. RESULTS: A range of paediatric ages and cancer diagnoses were included. Most Guatemalan parents surveyed (70%) made decisions about their child's cancer together and almost all (94%) without input from their community. Surveyed parents predominately preferred shared decision-making with their child's oncologist (76%), however 69% agreed it was best not to be provided with many options. Two-thirds of surveyed parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p=0.02). A small number of parents (11%) experienced heightened decisional regret, which did not correlate with socio-demographic characteristics or preferred decision-making role. Qualitative results supported quantitative findings, demonstrating a decision-making process that emphasised trust and honesty. CONCLUSIONS: Guatemalan parents preferred to make decisions with their medical team and appreciated providers who were honest and inclusive, but directive about decisions. This study reinforces the importance of the provider-parent relationship and encourages clinicians in all settings to ask about and honour each parent's desired role in decision-making.

Essential core competencies for scope of practice of paediatric oncology nurses in Latin America: a scoping review protocol.

INTRODUCTION: Nurses comprise the largest group of health workers globally and are essential to the provision of care necessary for delivering curative therapy to children with cancer. In high-income countries, previous studies of the nurse workforce have shown an association between patient morbidity and mortality and nursing-related factors such as staffing, education and the nursing practice environment. There is currently limited evidence available to define the scope of essential core competencies for paediatric oncology nursing (PON) practice internationally and specifically in Latin America. Clearly defined essential core competencies contribute to establishing nurses' scope of practice within clinical practice, education and research settings. Here, we aimed to map and synthesise the available evidence on the scope of PON practices in the context of clinical practice, educational training and research settings in Latin America. METHODS: A scoping review (ScR) protocol is reported, adhering to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement and guided by The Joanna Briggs Institute. MEDLINE/PubMed, Cochrane Library, Embase, CINAHL, Web of Science, Scopus, Science Direct and Latin American and Caribbean Health Sciences Literature, plus additional sources: The ProQuest Dissertation & Theses Global, The British Library, Google Scholar, medRXiv, ClinicalTrials.gov and WHO-ICTRP will be searched. No date or language restrictions will be employed. Two independent researchers will conduct all the steps of this ScR. The findings will be presented through tables, charts, narrative summaries and assessed based on the outcomes. The search strategy will be updated in May 2022. The expected completion date for this ScR is November 2022. ETHICS/DISSEMINATION: This protocol does not require ethical approval. The dissemination plans comprise peer-reviewed publication and conference presentations, to be shared with International Oncology Societies/International Nursing Societies and advisory groups to inform discussions on future research. We expect that our results will be of interest to nurse professionals, especially, PON and nurse scholars concerned with this particular issue.

Difficult acute lymphoblastic leukaemia diagnosis in a paediatric patient with mixed presentation of COVID-19 acute respiratory failure and multisystemic inflammatory syndrome.

New diagnoses of leukaemia and other malignancies are recently being made in paediatric patients with COVID-19. The rates of mortality and morbidity in some of these children are expected to be higher. In new cases, concurrent diagnosis can be difficult because multisystemic inflammatory syndrome (MIS-C) and malignancies have similar clinical presentations. We present the case of a preteenage child where the diagnosis of leukaemia was complicated and delayed by a multisystem involvement and an inconclusive bone marrow study. Clinical teams managing children with COVID-19 and MIS-C should suspect leukaemia and other malignancies when the clinical course is complicated and bone marrow suppression is persistent. Prompt diagnosis will allow start of treatment on time, minimising complications.

International Society of Paediatric Surgical Oncology (IPSO) Surgical Practice Guidelines.

Most children with tumors will require one or more surgical interventions as part of the care and treatment, including making a diagnosis, obtaining adequate venous access, performing a surgical resection for solid tumors (with staging and reconstruction), performing procedures for cancer prevention and its late effects, and managing complications of treatment; all with the goal of improving survival and quality of life. It is important for surgeons to adhere to sound pediatric surgical oncology principles, as they are closely associated with improved local control and survival. Unfortunately, there is a significant disparity in survival rates in low and middle income countries, when compared to those from high income countries. The International Society of Paediatric Surgical Oncology (IPSO) is the leading organization that deals with pediatric surgical oncology worldwide. This organization allows experts in the field from around the globe to gather and address the surgical needs of children with cancer. IPSO has been invited to contribute surgical guidance as part of the World Health Organization Initiative for Childhood Cancer. One of our goals is to provide surgical guidance for different scenarios, including those experienced in High- (HICs) and Low- and Middle-Income Countries (LMICs). With this in mind, the following guidelines have been developed by authors from both HICs and LMICs. These have been further validated by experts with the aim of providing evidence-based information for surgeons who care for children with cancer. We hope that this initiative will benefit children worldwide in the best way possible. Simone Abib, IPSO President Justin T Gerstle, IPSO Education Committee Chair Chan Hon Chui, IPSO Secretary.

Translating the Symptom Screening in Pediatrics Tool (SSPedi) into Argentinian Spanish for paediatric patients receiving cancer treatments, and evaluating understandability and cultural relevance in a multiple-phase descriptive study.

OBJECTIVES: To translate a symptom screening tool developed for paediatric patients receiving cancer therapies called Symptom Screening in Pediatrics Tool (SSPedi) into Argentinian Spanish and to evaluate the understandability and cultural relevance of the translated version of SSPedi among children with cancer and paediatric haematopoietic stem cell transplant (HSCT) recipients. METHODS: We conducted a multiphase, descriptive study to translate SSPedi into Argentinian Spanish. Using two translators, forward and backward translations were performed. The translated version was evaluated by Spanish-speaking paediatric patients 8-18 years of age receiving cancer treatments in two centres in Argentina and El Salvador. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was patient self-reported difficulty with understanding of the SSPedi instructions and each symptom using a 5-point Likert scale. Secondary outcomes were incorrect understanding of the SSPedi instructions, symptoms and response scale determined by cognitive interviews with the patients and rated using a 4-point Likert scale. Cultural relevance was assessed qualitatively. RESULTS: There were 30 children enrolled and included in cognitive interviews; 16 lived in Argentina and 14 lived in El Salvador. The most common types of Spanish spoken were Central American (17, 57%) followed by South American (10, 33%) and Castilian (3, 10%). No changes to Argentinian Spanish SSPedi were required based on the outcomes or qualitative comments. No issues with cultural relevance were identified by any of the respondents. CONCLUSIONS: We translated and finalised Argentinian Spanish SSPedi. Future research will focus on its use to describe bothersome symptoms by Argentinian Spanish-speaking children.

Giant intradural myxopapillary ependymoma: review of literature.

This report presents the longest spanning intradural myxopapillary ependymoma consisting of 23 vertebral segments in the literature. An 11-year-old boy presented with right arm pain, mid back pain and progressive paraparesis associated with urinary retention. On MRI, the patient was found to have an intradural lesion extending from C5 to S3. The patient underwent T7 and T8 laminectomies with an almost total resection except for a minimal residual adhering to the spinal cord. The patient with the largest spanning spinal cord ependymoma was managed satisfactorily without significant morbidity. A small laminectomy may be used in some occasions despite the tumour's extensive size because it may have a single point of attachment to the cord.

Oral mucositis in childhood cancer patients receiving high-dose methotrexate: Prevalence, relationship with other toxicities and methotrexate elimination.

BACKGROUND: Oral mucositis (OM) is one of the main adverse effects of the chemotherapeutic agent methotrexate (MTX). AIM: To evaluate the relationship of OM with MTX metabolism time and other toxicities in childhood, cancer patients receiving high-dose of methotrexate (HD-MTX). DESIGN: Seventy-seven childhood patients receiving HD-MTX for treatment of leukaemia, osteosarcoma or lymphoma were evaluated. MTX serum level, hepatic and renal function parameters, and presence and intensity of OM were analysed. RESULTS: The patients were submitted to 255 cycles of chemotherapy. OM was diagnosed in 191 (74.9%) cycles. Of these, 119 (46.6%) presented ulcerative lesions. Lymphoma was associated with severe OM (P = .01). OM was associated with higher serum levels of aspartate aminotransferase (P = .006), alanine aminotransferase (P = .04) and creatinine (P = .008). Increase of one unit of total bilirubin and indirect bilirubin associated, respectively, with 11% and 39% higher prevalence of OM. For each increase of one unit of creatinine serum level, it was observed a 37% higher prevalence of OM in patients with lymphoma. No association was found between delayed excretion of MTX and OM development. CONCLUSIONS: OM is a prevalent complication of childhood cancer patients receiving HD-MTX. Renal and hepatic toxicity could be considered risk factors for OM, especially in patients with lymphoma.

Translating the Symptom Screening in Paediatrics Tool (SSPedi) into North American Spanish and Among Spanish-speaking children receiving cancer treatments: evaluating understandability and cultural relevance in a multiple-phase descriptive study.

OBJECTIVES: Symptom screening is important to achieving symptom control. Symptom Screening in Paediatrics Tool (SSPedi) is validated for English-speaking children. Objectives were to translate SSPedi into Spanish, and to evaluate the understandability and cultural relevance of the translated version among Spanish-speaking children with cancer and paediatric haematopoietic stem cell transplant recipients. METHODS: We conducted a multiphase, descriptive study to translate SSPedi into Spanish. The first step was to determine whether one Spanish version would be appropriate for both North America and Argentina. Once this decision was made, forward and backward translations were performed. The translated version was evaluated by Spanish-speaking children 8-18 years of age receiving cancer treatments. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcome was child self-reported difficulty with understanding of the entire instrument and each symptom using a 5-point Likert scale. Secondary outcomes were incorrect understanding of SSPedi items identified by cognitive interviews with the children using a 4-point Likert scale and cultural relevance, which was assessed qualitatively. RESULTS: This report focuses on North American Spanish as a separate version will be required for Argentinian Spanish SSPedi based on different common vocabulary and grammatical structure. There were 20 children from Toronto and San Antonio included in cognitive interviews. The most common types of Spanish spoken were Mexican (13, 65%), Central American (2, 10%) and South American (2, 10%). No child reported that it was hard or very hard to complete Spanish SSPedi. Changes to the instrument itself were not required based on understanding or cultural relevance. CONCLUSIONS: We translated and finalised Spanish SSPedi appropriate for use in North America. Future research will translate and evaluate SSPedi for use in Argentina and other Spanish-speaking countries.

Prophylactic photobiomodulation therapy using 660 nm diode laser for oral mucositis in paediatric patients under chemotherapy: 5-year experience from a Brazilian referral service.

The use of photobiomodulation therapy (PBMT) in the prevention of oral mucositis (OM) in paediatric care has increased. In this article, we report data of paediatric oncology/haematopoietic stem cell transplantation (HSCT) patients treated with PBMT to prevent chemotherapy-induced OM. A retrospective study was conducted at a Brazilian referral service. Prophylactic PBMT was used in children and adolescents (≤ 17 years) following the protocol: InGaAIP, 660 nm, 100 mW, 2 J, 3.33 W/cm2, and 20 s per point. Demographic data and OM severity scores were assessed. A regression model tested the association between OM with prophylactic PBMT and antineoplastic therapy. A total of 148 individuals who had undergone 358 chemotherapy cycles were analysed. A higher occurrence of OM was observed in HSCT and osteosarcoma (OS) patients. Except for HSCT, OM was associated with methotrexate (MTX) use in all disease groups. PBMT significantly reduced OM severity in acute lymphoblastic leukaemia (ALL) and OS patients. OM grade was 3.16 and 5.45 times higher among individuals with ALL and OS, who had not undergone prophylactic PBMT compared with those who had undergone prophylactic PBMT (p < 0.001). PBMT prevented chemotherapy-induced OM. Individuals who used MTX and did not undergo prophylactic PBMT were at increased risk of OM.

Association between multiple symptoms and quality of life of paediatric patients with cancer in Brazil: a cross-sectional study.

OBJECTIVES: To identify the association of multiple symptoms and clinical characteristics on quality of life (QoL) of paediatric patients with cancer. DESIGN: A descriptive, cross-sectional study. SETTING: South American Children's Hospital for Cancer Treatment (Barretos, São Paulo, Brazil). PARTICIPANTS: A total of 157 participants, 116 paediatric patients, diagnosed with cancer, undergoing chemotherapy treatment, between 7 and 18 years of age and 41 proxies for patients between 2 and 6 years of age. PRIMARY OUTCOME MEASURES: The severity and prevalence ofsymptoms were identified through the use of a culturally adapted multi-symptomscreening tool, and the influence these symptoms, in association with clinicalcharacteristics, had on the QOL of Brazilian pediatric cancer patients wasassessed. RESULTS: Prevalent symptoms identified by all participants were 'feeling tired' (98, 62.4%), 'feeling more or less hungry (do not feel like eating) than you usually do' (96, 61.1%), 'changes in taste (flavour of the food)' (89, 56.7%), 'throwing up or feeling like you may throw up' (77, 49%) and 'changes in how your body (visually) or face looks' (72, 45.9%). The multivariate analysis for symptom severity as reported by proxies showed that surgery (OR 0.20, 95% CI 0.04 to 0.98, p=0.047) and time of diagnosis (OR 0.14, 95% CI 0.03 to 0.66, p=0.012) were associated with a decreased OR of high severity symptoms.An analysis of the clinical characteristics associated with Pediatric Quality of Life Inventory (PedsQL) demonstrated no significant effect on QoL in any of the domains evaluated. The association between Symptom Screening in Pediatrics Tool and PedsQL in the self-report version demonstrated a significant negative influence of all symptoms on the QoL. CONCLUSIONS: The prevalence of symptoms experienced among pediatric patients during treatment was high and significantly influenced all aspects of quality of life,especially in the emotional domain.

Usefulness of serum galactomannan in initiating and modifying antifungal therapy in children with cancer and persistent high-risk febrile neutropenia.

BACKGROUND: Invasive fungal disease is a major cause of morbidity and mortality in children with cancer and high-risk febrile neutropenia (HRFN). Repeated serum galactomannan (sGM) measurements have been described as an effective tool to guide therapy in adults under suspicion of invasive aspergillosis. However, the utility of this approach has not been reported in paediatric population. OBJECTIVES: To evaluate the usefulness of sGM measurements in initiating and modifying antifungal therapy (AFT) in children with cancer and persistent HRFN. PATIENTS/METHODS: Nested case-control study in children with cancer and persistent HRFN episodes, between July 2013 and January 2019. Patients were classified as cases and controls depending on if they received AFT or not, respectively. Through odds ratio analysis, we assessed the role of sGM positivity in the AFT initiation decision. Then, we analysed the group of patients that initiated AFT, and compared those who had AFT modifications and those who did not, analysing different sGM kinetics thresholds. RESULTS: A total of 191 episodes from children with persistent HRFN were enrolled, of which 107 received AFT and 84 did not. The median age was 7 years (IQR 4-12), 52% were male and 89% had a haematologic malignancy as underlying disease. Positive sGM was not associated with AFT initiation (OR 0.99, 95% CI 0.43-2.33, P = .99). A difference threshold in sGM Δ ≥ 0.3 sGM was significantly associated with AFT modification (OR 5.07, 95% CI 1.02- 25.70, P = .04). CONCLUSIONS: Our results suggest the utility of serial sGM sampling during AFT in children with persistent HRFN.

Primary osteosarcoma of the skull in teenager.

Osteosarcoma of the skull is a rare primary malignant bone tumour in children, representing 1-2% of all cranial tumours. We describe a case of a 17-year-old adolescent with chondroblastic osteosarcoma of the parietal-occipital bone and no distant metastases at presentation treated with neoadjuvant chemotherapy, surgery and, later, concurrent chemoradiotherapy. The patient suffered progressive disease and died 15 months after diagnosis. There are at least 15 paediatric cases of osteosarcoma of the skull described in the literature. Due to its rarity, there are no broad prospective studies on this entity, which has distinctive features when compared to other craniofacial tumours, carrying a worse prognosis. Complete surgical resection is needed for long-term survival, whereas chemotherapy and radiotherapy have still questionable indications.

Health-related quality of life, culture and communication: a comparative study in children with cancer in Argentina and Sweden.

BACKGROUND: Malignant disorders in childhood are life-threatening conditions, and issues regarding the children's health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study was to explore HRQOL in children with cancer in two countries, Argentina and Sweden, which have different cultural contexts. The specific aims were: to determine HRQOL by gender, age, diagnosis, treatment modality, time since diagnosis, and parental education/employment across cultures. Further aims were to assess the child/parent relationship in HRQOL and the influence of demographic variables in psychosocial and physical HRQOL in each country. METHODS: A cross-sectional study was performed in 2014, including 58 children (24 females, 34 males) and 62 parents/guardians. The instrument, the Pediatric Quality of Life Inventory™ (PedsQL™, generic, cancer and fatigue modules), and medical records were used. The response rate was 97%. RESULTS: The mean age of the children was 8.67 years (SD 5.1, range 2-18 years) and the mean time on treatment was 10.7 months (SD 8.7, range 1-30 months). The most common diagnosis was leukaemia (57%). In Argentina, in comparison with Sweden, a higher estimation of generic HRQOL was reported among adolescents (p = 0.022) and more cancer-related problems among school-age children (p < 0.0001). Children and parents in both countries confirmed the major problem with fatigue and multimodality therapy regimes, but lower levels of fatigue were reported in Argentina. Adolescents and children with solid tumours appeared as vulnerable groups. In Sweden, children whose mothers had post-secondary education reported less cancer-related problems (p = 0.031). Good relationships were found between child/parent reports in Argentina regarding the fatigue module (p = 0.034) and physical subscale (p = 0.014), and in Sweden regarding generic health (p = 0.004), including psychosocial (p = 0.006) and physical subscales (p = 0.042), and cancer (p = 0.001), and fatigue (p < 0.0001) modules. In Sweden, psychosocial health (OR 7.5; p = 0.007) and physical health (OR 6.2; p = 0.011) were positively influenced by being a school-age child. CONCLUSIONS: Fatigue is as a major problem across cultures. Still, being in school facilitates recovery. Good relationships in psychosocial HRQOL highlight professional challenges regarding severe issues and open communication, and the need of performing comparative studies of HRQOL of children with cancer from different cultural backgrounds.

Paediatric tumour boards in Spain: a national survey.

PURPOSE: Multidisciplinary tumour boards (MDTs) are conducted worldwide for the management of patients with cancer, and they deliver a higher standard of care by simultaneously involving different specialists in diagnosis and treatment planning. However, information of paediatric MDTs functioning is scarce. A pilot study was conducted in Spain in the frame of the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-Net). METHODS: A specific questionnaire was designed regarding various features of MDT practice. Data collected included information on the centres and the team, infrastructure for meetings, MDT organization/logistics and clinical decision-making. The survey was distributed to all Paediatric Oncology Units that register patients in the Spanish Registry of Childhood Tumours (RETI-SEHOP). RESULTS: 32 out of 43 contacted centres responded the questionnaire (74 % response rate; 88 % response rate for centres with >25 new patients/year). All units with >25 new patients/year have a dedicated Paediatric MDT compared to 76 % of units with ≤25 new patients/year. MDTs should be improved at institutional level by clear protected time in service planning for all specialists involved, incentives for attendance and attendance registration. Clinical decision-making process and follow-up of recommendation adherence should be assessed and potential legal responsibilities for physicians participating in Tumour Board defined. Network collaboration through virtual MDTs, using available videoconferencing tools, is an opportunity to share expertise among centres.

Non-pharmacological interventions to manage fatigue and psychological stress in children and adolescents with cancer: an integrative review.

Cancer-related fatigue (CRF) is the most stressful and prevalent symptom in paediatric oncology patients. This integrative review aimed to identify, analyse and synthesise the evidence of non-pharmacological intervention studies to manage fatigue and psychological stress in a paediatric population with cancer. Eight electronic databases were used for the search: PubMed, Web of Science, CINAHL, LILACS, EMBASE, SCOPUS, PsycINFO and the Cochrane Library. Initially, 273 articles were found; after the exclusion of repeated articles, reading of the titles, abstracts and the full articles, a final sample of nine articles was obtained. The articles were grouped into five categories: physical exercise, healing touch, music therapy, therapeutic massage, nursing interventions and health education. Among the nine studies, six showed statistical significance regarding the fatigue and/or stress levels, showing that the use of the interventions led to symptoms decrease. The most frequently tested intervention was programmed physical exercises. It is suggested that these interventions are complementary to conventional treatment and that their use can indicate an improvement in CRF and psychological stress.

Calidad de Vida en cuidadores primarios de pacientes oncopediátricos. Instituto Nacional de Oncología y Radiobiología / Qualityof Life in primary careers of paediatric oncology patients. National Institute of Oncology and Radiobiology

Introducción: el cuidado de pacientes oncopediátricos constituye todo un reto no solo para los servicios de salud, sino también para sus cuidadores primarios.Objetivo: describir el significado de calidad de vida e identificar factores relacionados con ella en cuidadores primarios de pacientes oncopediátricos.Material y Métodos: se realizó un estudio cualitativo, descriptivo de corte transversal, empleándose como método de investigación el estudio de caso, en 24 informantes clave hospitalizados en el Instituto Nacional de Oncología y Radiobiología, durante el período de enero 2012 a mayo del 2013. Las técnicas utilizadas fueron la entrevista en profundidad y la entrevista grupal focalizada. Procesamiento y análisis de los datos: transcripción de entrevistas, segmentación de información, establecimiento de tipologías, elaboración de proposiciones y conclusiones. Resultados: la calidad de vida se describe como un proceso, su significado y contenido varían desde la perspectiva de la salud a la de la enfermedad, matizado por las vivencias de los participantes. Los factores que se identifican en relación con su calidad de vida estuvieron vinculados con las repercusiones de la enfermedad, los tratamientos y la hospitalización en el orden físico, psicológico, socioeconómico y espiritual. Conclusiones: el significado del concepto Calidad de Vida es vivenciado desde diferentes perspectivas: la salud y la enfermedad. La enfermedad y su evolución, los tratamientos y la hospitalización tuvieron repercusiones en las diferentes dimensiones de la calidad de vida(AU)

Introduction: the attention and care of paediatric oncology patients represents a whole challenge, not only for health services, but also for the primary careers.Objective: describe the meaning of life quality and identify the factors related to it in primary careers of children and adolescents with cancer admitted at the National Institute of Oncology and Radiobiology within January 2012 and May 2013. Material and Methods: a qualitative, transversal descriptive case study was done to 24 key informants. Deep interview and focused group interviews were the techniques used. The processing and analysis of the data compiled followed the present algorithm: transcription of the interviews, segmentation of the information, typology establishment and the preparation of proposal and conclusion. Results: quality of life is described as a process where the meaning and content varies from the healthy to the sick perspectives tinged with experiences of the participants. The emerging factors experienced related to quality of life were associated with their worries about the disease, the treatment and hospitalization as to physical, psychological, socio-economical and spiritual facts. Conclusions: the meaning quality of life is experienced from different perspectives: health and illness. Illness and its evolution, treatment and hospitalization had a great impact on the different dimensions of life quality(AU)

Parent perceptions of paediatric oncology services at the Eric Williams medical sciences complex, Trinidad and Tobago / Percepciones de madres y padres sobre los servicios de oncología pediátrica en el complejo Eric Williams de ciencias médicas, en Trinidad y Tobago

OBJECTIVE: To assess the perceptions of parents of children with cancer and to determine level of satisfaction with the paediatric oncology services at the Eric Williams Medical Sciences Complex (EWMSC). DESIGN AND METHODS : Parents of children with cancer were surveyed during the period 12-27 October 2009 as part of a wider needs assessment project using a questionnaire designed to obtain information on their perception of medical, physical and psychosocial resources during the family encounter at the EWMSC. RESULTS: Overall, parents expressed a high level of satisfaction with the quality of delivery of medical and pharmaceutical services which were at no direct cost to the patient. Issues of concern included a lack of a structured clinic appointment system, inadequate patient care assistance on the ward for very young patients and the housing of non-oncology patients in the oncology specialty unit. Apart from their child's illness, fear of job and income loss was a major stressor for parents. CONCLUSION: Medical needs of patients were perceived to be well met, but there was need to address the psychosocial, physical and educational needs of parents.

OBJETIVO: Evaluar las percepciones de madres y padres de niños con cáncer, y determinar el nivel de satisfacción con los servicios de oncología pediátrica del Complejo Eric Williams de Ciencias Médicas (EWMSC). DISEÑO Y MÉTODOS: Se hicieron encuestas a los padres y madres de niños con cáncer, durante el periodo del 12-27 de octubre de 2009, como parte de un proyecto de evaluación de las necesidades. Se diseñó un cuestionario para obtener información acerca de su percepción de los recursos médicos, físicos y psicosociales durante el encuentro de familias en el Complejo Eric Williams de Ciencias Médicas Complejo (EWMSC). RESULTADOS: En general, padres y madres manifestaron un alto nivel de satisfacción con la calidad de los servicios médicos y farmacéuticos sin costo alguno para los pacientes. Los problemas de mayor preocupación incluían la falta de un sistema bien estructurado de citas médicas, atención inadecuada en relación con la asistencia en la sala de los pacientes muy jóvenes, y el alojamiento de los pacientes no oncológicos en la unidad de especialidad de oncología. Aparte de la enfermedad de sus niños, el miedo a perder el trabajo y los ingresos, era una de las causas principales de stress en los padres. CONCLUSIÓN: Las percepciones daban por bien satisfechas las necesidades de los pacientes, pero apuntaban al imperativo de atender las necesidades psicosociales, físicas y educativas de padres y madres.