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ObjectivesSymptom 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.MethodsWe 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 measuresPrimary 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.ResultsThis 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.ConclusionsWe 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.

In order to reduce nonadherence and treatment abandonment of children with cancer in El Salvador, institutions located nearby the patients' homes were involved to provide support. Methodological approach: Health clinics and municipality offices in the patients' communities were asked to assist families who were not promptly located after missing hospital appointments, or those whose financial limitations were likely to impede continuation of treatment. Data was collected about the number of contacted institutions, the nature of help provided, staff's time investments, and parents' perceptions about the intervention.Local institutions (133 from 206 contacts) conducted home visits (83), and/or provided parents with money (55) or transportation (60). Parents found this support essential for continuing the treatment but they also encountered challenges regarding local institutions' inconsistencies. Nonadherence and abandonment decreased.Economic burden was reduced on both the families and the hospital. Involvement of external institutions might become regular practice to support families of children with cancer.

ObjectivesTo 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.MethodsWe 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 measuresThe 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.ResultsThere 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.ConclusionsWe translated and finalised Argentinian Spanish SSPedi. Future research will focus on its use to describe bothersome symptoms by Argentinian Spanish-speaking children.

ObjectivesPaediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child’s physical health, pain or general fatigue and parents’ QoL over time among patients with paediatric leukaemia in El Salvador.MethodsThis was a prospective observational cohort study. Children 2–18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time.ResultsOf the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child’s physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents’ QoL (estimate=1.0, 95% CI −0.8 to 2.8).ConclusionsAmong paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.

Background In El Salvador, about 200 new cases of pediatric cancer are diagnosed each year, and survival rates approach 70%. Although treatment is available at no cost, abandonment of therapy has remained at a steady yearly rate of 13% during the past decade. A time sensitive adherence tracking procedure (TS-ATP) was recently implemented to detect missed appointments, identify their causes, and intervene promptly. Procedure The study team was informed daily of patient/family failure to attend medical appointments in the pediatric oncology unit; the families were contacted and interviewed to ascertain and address the reasons. Patients who did not return after this initial contact were contacted again through local health clinics and municipalities. Law enforcement was a last resort for patients undergoing frontline treatment with a good prognosis., The system was adapted to clinical urgency: families of patients undergoing induction therapy were contacted within 24 hr, those in other therapy phases, within 48 hr, and those who had completed treatment, within one week. Reasons for absence were obtained by telephone or in person. Results The annual rate of abandonment was reduced from 13–3% during the 2 years period. There were 1,111 absences reported and 1,472 contacts with caregivers and institutions. The three main reasons for absences were financial needs (165, 23%), unforeseen barriers (116, 16%), and domestic needs (86, 12%). Conclusions Use of the treatment adherence tracking system to locate and communicate with patients/families after missed appointments and the allocated aid stemming from these interviews substantially reduced abandonment and non-adherence. Pediatr Blood Cancer 2015;62:1609–1615. © 2015 Wiley Periodicals, Inc.

Treatment abandonment, the failure to complete therapy that is required for definitive disease control, frequently causes treatment failure for pediatric patients in low- and middle-income countries with chronic conditions, particularly cancer. Other forms of incomplete treatment affecting children in all settings, such as nonadherence and loss to follow-up, are often confused with treatment abandonment. Unclear definitions of incomplete treatment dramatically affect reported outcomes. To facilitate disease-specific and cross-sector analyses, we outline a practical approach to categorize forms of incomplete treatment, present distinct semantic categories with case examples and provide an algorithm that could be tailored to disease- and context-specific needs. Pediatr Blood Cancer 2015;62:565–570. © 2015 Wiley Periodicals, Inc.

Hospital detention practices can be defined as refusal to release living patients after medical discharge is clinically indicated, or refusal to release bodies of deceased patients, when families are unable to pay hospital bills. Each additional day for which patients are detained adds to their bills, increasingly hindering families’ ability to obtain patients’ release. Patients are sometimes detained in hospitals, or bodies detained in mortuaries, for months. Occasionally, patients are completely left behind in hospitals when families are unable to pay. Unclaimed patients’ bodies might be disposed of in mass graves. The problem’s magnitude is unknown, but is probably more widespread than is documented. Hospital detention has been reported by human rights organisations, clinicians, journalists, and laypeople in Africa, Asia, Latin America, and eastern Europe. The problem aff ects children and adults with acute disorders (eg, people involved in road accidents and women with birth complications) and chronic diseases (eg, cancer or HIV/AIDS). Reports do not have consistent terminology to enable comparisons of studies worldwide or to eff ectively unite forces. We have formed the International Society of Paediatric Oncology and Paediatric Oncology in Developing Countries (SIOP PODC) Global Taskforce on Hospital Detention Practices, with the following objectives: to augment critical awareness; to introduce consistent terminology; to help to map global scope reliably; to elucidate adverse consequences; to address root causes; and to identify and support implementation of eff ective solutions to end hospital detention practices. The Taskforce endorses the following core statements related to each objective. Patients’ detention violates international human rights, including the right to not be imprisoned as a debtor and to have access to medical care. Recommended terminology includes “hospital detention practices” and “detained patients”. The term “detention” minimises confusion with positive health-care retention in medical literature. The term “practices” more accurately describes reality than does “policies”. Although hospital detention is often not the offi cial policy publicly defended by governments, it might be a wide spread unofficial practice. To map the global scope, the Taskforce calls on professionals and advocates to report hospital detention in scientifi c journals, media, and public venues. Recognition of adverse consequences is crucial. Fear of detention might prevent or delay conventional medical help-seeking, and encourages abandonment of potentially curative treatment after patients’ release. Progressive or relapsed disease and unnecessary death often result. Detention aggravates hospital overcrowding, increases infection risk, and denies schooling to children. Hospital detention is often the result of mismanagement, corruption, dysfunctional health-care system structures, inadequate health insurance coverage, and unfair waiver procedures, warranting attention. Advocacy by stakeholders is urgently needed (panel). Our Taskforce endorses this position statement in the conviction that detention of patients is unethical and inhumane, and must end.

Abandonment of therapy is one of the most common causes of treatment failure among children with cancer in low-income countries. Our objectives were to describe the prevalence and predictors of abandonment among such children with cancer in El Salvador. We analyzed data on patients younger than 16 years, diagnosed with any malignancy between January 2001 and December 2003 at the Benjamin Bloom National Children's Hospital, San Salvador. Among 612 patients, 353 were male (58%); the median age at diagnosis was 5.1 years; 59% of patients were diagnosed with leukemia/lymphoma, 28% with solid tumors and 13% with brain tumors. The prevalence of abandonment was 13%. Median time to abandonment was 2.0 (range 0-36) months. In univariate analyses, paternal illiteracy [odds ratio (OR) 3.8, 95% confidence interval (CI) 2.0-7.2; p = 0.001]; maternal illiteracy (OR = 5.1, 95% CI 2.5-10; p < 0.0001); increasing number of household members (OR = 1.2, 95% CI 1.1-1.3; p = 0.004); and low monthly household income (OR per $100 = 0.59, 95% CI 0.45-0.75; p < 0.0001) all significantly increased the risk of abandonment, whereas travel time to hospital did not. In multiple regression analyses, low monthly income and increased number of people in the household were independently predictive of abandonment. In conclusion, in El Salvador, despite the provision of free treatment, socioeconomic variables significantly predict increased risk of abandonment of therapy. Understanding the pathways through which socioeconomic status affects abandonment may allow the design of effective interventions.