Eufemia Jacob

Resumo Objetivo Comparar os escores de qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes hospitalizados com câncer que apresentaram e não apresentaram fadiga e correlacionar fadiga e QVRS. Método Estudo transversal realizado durante 48 meses no setor de onco-hematologia de hospital público localizado no interior paulista, com 63 crianças e adolescentes com câncer. Para mensurar a fadiga e a QVRS, os participantes preencheram, respectivamente, os instrumentos Pediatric Quality of Life Inventory™ Escala Multidimensional do Cansaço e Pediatric [...] Resumo Objetivo Comparar os escores de qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes hospitalizados com câncer que apresentaram e não apresentaram fadiga e correlacionar fadiga e QVRS. Método Estudo transversal realizado durante 48 meses no setor de onco-hematologia de hospital público localizado no interior paulista, com 63 crianças e adolescentes com câncer. Para mensurar a fadiga e a QVRS, os participantes preencheram, respectivamente, os instrumentos Pediatric Quality of Life Inventory™ Escala Multidimensional do Cansaço e Pediatric

Background Sickle cell disease (SCD) is a genetic blood disorder that increases the risk for recurrent painful episodes. Parents’ knowledge regarding SCD management is poor, leading to poor symptom management and lower Health Related Quality of Life (HRQOL) in children with SCD. The purpose of this study was to examine the effects of a parent educational intervention program ( PEIP ) on the parental knowledge, self-efficacy and perception of the HRQOL of their children with SCD.Methods Two groups of Omani parents of children with SCD were randomly assigned to either an experimental group (n=37) receiving PEIP accessed on a smartphone + weekly phone reinforcement for four weeks, or a control group (n=35) receiving Standard Educational Program (SEP) as part of standard of care. Outcome measures were knowledge, self-efficacy and HRQOL of children with SCD. Knowledge Questionnaire, Self-Efficacy Scale, and HRQOL-SCD + HRQOL-GENERIC were administered twice (at enrollment, and 4 weeks after enrollment). Statistical Pakage for Social Science, version 24 was used for data analyses.Results Parents’ knowledge and self-efficacy scores were significantly higher for the intervention group (PEIP) when compared to the SEP 4 weeks post intervention. Also, The total HRQOL scores were higher at 4 weeks compared to baseline, and were also higher in the PEIP compared to the SEP. Parents’ knowledge and self-efficacy were significant predictors of HRQOL in children with SCD.Conclusions PEIP delivered by using a smartphone was effective in improving the parents’ knowledge, self-efficacy in symptom management, and parent and child perception of HRQOL. PEIP was innovative in that it targeted all dimensions of HRQOL in children with SCD. Finally, the family played an important role in the process of care and therefore, developing family-based interventions is the key factor for improving HRQOL in children with SCD. The study highlighted the effectiveness of smartphone technology for delivering a high quality educational intervention program for parents and their families.

An exploratory study was conducted to examine the quality of life and pain experienced by patients with pediatric cancer at home after discharge. Physical, cognitive, social, and emotional aspects of quality of life were measured and how these may be affected by age, sex, diagnosis, and pain status. The authors also characterized intensity, location, and quality of pain experienced. A sample of 33 patients participating in a larger study was selected on the basis of having pain on the day of discharge and having completed the Pediatric Quality of Life Inventory Generic, Cancer Module, Multidimensional Fatigue Scale, and the Adolescent Pediatric Pain Tool at home. Cancer diagnoses were leukemias/lymphomas (42.4%), brain/central nervous system tumors (27.3%), sarcomas (24.2%), or other (6.1%). More than half of patients reported pain (n=17; 51.5%). Patients with pain had more fatigue affecting the quality of life (P=0.01), and lower physical and emotional functioning, leading to lower overall health-related quality of life scores (P=0.011). Female individuals and adolescents reported worse emotional functioning (P=0.02 and P=0.05, respectively). Physical, cognitive, and social functioning were lowest among patients diagnosed with sarcomas (P=0.00, P=0.01, and P=0.04, respectively). It is important to understand the symptom experience of patients at home as a first step in moving towards optimal discharge teaching and treatment.

This randomised crossover trial compared nocturnal auto-adjusting continuous positive airway pressure (APAP) and nocturnal oxygen therapy (NOT) in adults and children with sickle cell anaemia, with patient acceptability as the primary outcome. Secondary outcomes included pulmonary physiology (adults), safety, and daily pain during interventions and washout documented using tablet technology. Inclusion criteria were age > 8 years and the ability to use an iPad to collect daily pain data. Trial participation was 4 weeks; week 1 involved baseline data collection and week 3 was a washout between interventions, which were administered for 7 days each during weeks 2 and 4 in a randomised order. Qualitative interviews were transcribed verbatim and analysed for content using a funnelling technique, starting generally and then gaining more detailed information on the experience of both interventions. Safety data included routine haematology and median pain days between each period. Missing pain day values were replaced using multiple imputation. Ten adults (three female, median age 30.2 years, range 18–51.5 years) and eleven children (five female, median age 12 years, range 8.7–16.9 years) enrolled. Nine adults and seven children completed interviews. Qualitative data revealed that the APAP machine was smaller, easier to handle, and less noisy. Of 16 participants, 10 preferred APAP (62.5%, 95% confidence interval (CI) 38.6–81.5%). Haemoglobin decreased from baseline on APAP and NOT (mean difference −3.2 g/L (95% CI −6.0 to −0.2 g/L) and −2.5 g/L (95% CI −4.6 to 0.3 g/L), respectively), but there was no significant difference between interventions (NOT versus APAP, 1.1 (−1.2 to 3.6)). Pulmonary function changed little. Compared with baseline, there were significant decreases in the median number of pain days (1.58 for APAP and 1.71 for NOT) but no significant difference comparing washout with baseline. After adjustment for carry-over and period effects, there was a non-significant median difference of 0.143 (95% CI −0.116 to 0.401) days additional pain with APAP compared with NOT. In view of the point estimate of patient preference for APAP, and no difference in haematology or pulmonary function or evidence that pain was worse during or in washout after APAP, it was decided to proceed with a Phase II trial of 6 months APAP versus standard care with further safety monitoring for bone marrow suppression and pain. ISRCTN46078697 . Registered on 18 July 2014

Purpose To compare sleep and health‐related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. Method A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8–18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. Results Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. Conclusions The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.

Objective: to describe the steps in the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool, a pain assessment measure, for use with Brazilian children and adolescents with cancer. Method: a methodological and cross-sectional study was undertaken. The steps in the cross-cultural adaptation process of the tool that resulted in the semantic validation followed an adapted method, including: initial translation, consensus version of translations, evaluation by Expert Committee, back-translation, comparison with original tool and actual semantic validation. Results: the initial translation process of the tool until the final consensus was reached took approximately four months. In the evaluation by the Expert Committee, three health professionals participated in the study, who were knowledgeable on the theme and mastered the English language. In the semantic validation, 35 children and adolescents aged between eight and 18 unfinished years participated, who were patients at the institution where children and adolescents with cancer were treated and monitored. After concluding all steps, the researchers met to discuss the proposed changes. At the end of the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool, all initially proposed 67 pain descriptors were maintained in their Portuguese version. Conclusion: the steps in the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool were executed and described in detail, evidencing the rigorous development of the study.