Policies designed to enhance the quality of life of children with cancer at the end-of-life

This study evaluated preventive intervention designed to enhance the quality of life of children with cancer at the end-of-life, based on a theoretical model of crises denoted as the Perceived Personal Control Crisis Model. Preventive intervention on the Social Action level consists of introducing policies and services in the pediatric hemato-oncology department designed to enhance the quality of life of children with cancer at the end-of-life.     

Parents' perception of the quality of life of children with intellectual disabilities

There has been limited research conducted on the quality of life (QoL) of children with intellectual disabilities (IDs). We investigated the QoL in children aged 5-18 years with ID and compared the results with healthy children of the same age in this study. The results indicated that the scores of students with ID were lower on all scales and also that children with ID should be supported in all QoL dimensions (physical, social, emotional, and school functioning). Associations between QoL and factors such as the educational level of the mothers, income level of the family, age at diagnosis, age group, and level of ID were examined in the ID group. A diagnosis of ID before the age of 2 was found to have a statistically significant positive effect on QoL scores. Our findings highlight that early diagnosis is the most important measure to improve the QoL of people with ID.     

Depressive symptoms contribute to quality of life in children with epilepsy

BackgroundImprovement of the quality of life (QOL) for children with epilepsy is one of the most important therapeutic goals. It is widely acknowledged that in adults with epilepsy one of the best QOL predictors is psychiatric comorbidity. In children with epilepsy, however, it is not clear whether psychiatric comorbidity impairs QOL.AimsThe aim of this study was to evaluate QOL in children with epilepsy and to identify the strongest predictors of the same.MethodsA total of 28 enrolled patients completed the Questionnaire for Measuring Health-Related Quality of Life in Children (KINDL-R) and 3 assessments of clinical status: the Depression Self-Rating Scale for Children (DSRS-C), the Children Manifest Anxiety Scale (CMAS), and the Side Effects and Life Satisfaction (SEALS). Various demographic and clinical factors were analyzed as possible predictors of KINDL-R scores.ResultsThe strongest predictor of QOL was the total DSRS-C score (r = −0.69, p < 0.01), which also predicted physical (r = −0.58, p < 0.01) and emotional wellbeing (r = −0.53, p < 0.05) subscale scores.ConclusionsSymptoms of depression were more predictive of QOL than were seizure type, seizure duration, number and adverse effects of AEDs, or anxiety. Number of AEDs did have an effect, just not as prominent as symptoms of depression.     

Parents' assessment of quality of care and grief following a child's death

BACKGROUND: Deaths among children are rare, but the effect on family members is profound. Compared with adult deaths, information about grief, recovery, and quality of care is sparse. OBJECTIVES: To describe aspects of bereavement for parents who had experienced the death of a child and to compare these aspects by parent sex, type of death, and overall experience. DESIGN: In-person interviews with families, primarily parents, a mean of 21.8 months after the child's death. SETTING: Academic, tertiary care, faith-based children's hospital. PARTICIPANTS: Fifty-nine child deaths and 79 parents or guardians. MAIN OUTCOME MEASURES: In-person interviews, including standard instruments for bereavement and quality of care: the Texas Revised Inventory of Grief and the Comprehensive Assessment of Satisfaction With Care-Short Form. RESULTS: Fathers and mothers had similar levels of grief. Mothers who experienced the sudden death of their child had somewhat more intense grief reactions than those whose child died of a chronic condition. Grief scores did not vary according to satisfaction with treatment. Comprehensive Assessment of Satisfaction With Care-Short Form scores were high for parents and similar between mothers and fathers and between sudden and unexpected deaths. CONCLUSIONS: Although there were some differences in grief responses among parents, satisfaction-with-care scores were high. Further studies should examine the role of satisfaction with care in parental grief response and incorporate the reporting of experiences rather than simple ratings to measure satisfaction with care.     

Life and death decisions for incompetent patients: determining best interests--the Irish perspective

Aims: To determine whether healthcare providers apply the best interest principle equally to different resuscitation decisions. Methods: An anonymous questionnaire was distributed to consultants, trainees in neonatology, paediatrics, obstetrics and 4th medical students. It examined resuscitation scenarios of critically ill patients all needing immediate resuscitation. Outcomes were described including survival and potential long‐term sequelae. Respondents were asked whether they would intubate, whether resuscitation was in the patients best interest, would they accept surrogate refusal to initiate resuscitation and in what order they would resuscitate. Results: The response rate was 74%. The majority would wish resuscitation for all except the 80‐year‐old. It was in the best interest of the 2‐month‐old and the 7‐year‐old to be resuscitated compared to the remaining scenarios (p value <0.05 for each comparison). Approximately one quarter who believed it was in a patient best interests to be resuscitated would nonetheless accept the family refusing resuscitation. Medical students were statistically more likely to advocate resuscitation in each category. Conclusion: These results suggest resuscitation is not solely related to survival or long‐term outcome and the best interest principle is applied differently, more so at the beginning of life.     

Health-related quality of life among children with cancer in Hyderabad,India

Objective  

Health-related quality of life (HRQL) experienced by children with cancer is more important than ever before as survival rates are increasing. The aim of this study was to assess the HRQL of children with cancer in a developing country, using physician proxy assessments.     

儿童恶性肿瘤幸存者健康相关生活质量研究进展

随着医疗科学技术的发展,儿童恶性肿瘤的幸存者越来越多,幸存者的健康相关生活质量(HRQoL)逐渐成为关注的焦点。儿童恶性肿瘤幸存者除了要承受疾病带来的生理、心理、社会的压力,还将要面对由治疗带来的生长发育障碍、性腺功能障碍及癌症远期效应,如脏器功能损害和二次肿瘤。大量研究显示,恶性肿瘤HRQoL显著低于健康人群,但也有少量的研究认为癌症经历对幸存者的生活质量可能有积极的影响。目前HRQoL的评价主要通过生活质量量表完成,后者可以从躯体健康、心理健康、社会健康和精神健康等方面进行综合评价。期待更多的观察性、横断面、尤其是长期随访研究来进一步描述儿童恶性肿瘤幸存者的HRQoL,这样可以为更多的干预研究提供基础,更为临床工作者的临床决策提供循证依据。     

Rhinitis, rhinosinusitis and quality of life in children

Quality of life (QoL) or, rather, health-related QoL, is currently regarded as a crucial aspect of the general well-being of patients and, in consequence, of the effects of a disease and its treatment. This is particularly true for respiratory allergy (asthma and rhinitis), which are chronic diseases and also for sinusitis (rhinosinusitis). A number of questionnaires (instruments), either generic or specific, have been developed and validated to assess the QoL in adults and children, for asthma and rhinitis, whereas there are few specific instruments for chronic rhinosinusitis. The literature provides strong evidence of the effects of allergic rhinitis, asthma and their treatments on QoL in paediatric patients, as well as in adults, whereas the number of experimental data on rhinosinusitis is limited, especially in children. Clinical trials evidenced some controversial points, mainly the weak correlation existing between QoL and traditional objective parameters. It has become clear that the QoL questionnaires measure the aspects of the disease that partially differ from the routinely evaluated parameters and that QoL should integrate, not replace, the objective measurements.     

The link between health-related quality of life and clinical symptoms among children with attention-deficit hyperactivity disorder

Clinical research on attention-deficit hyperactivity disorder (ADHD) has begun to integrate measures of health-related quality of life (HRQL) as part of the overall assessment of treatment outcomes. This study examines the association between HRQL and measures of clinical symptoms of ADHD. Data were gathered from 297 children and adolescents in an 8-week, randomized, double-blind, placebo-controlled, clinical trial of atomoxetine treatment for ADHD. HRQL was assessed with the Child Health Questionnaire 50-item Parent Form. ADHD symptoms were assessed with the ADHD Rating Scale-IV; Parent Version and Clinical Global Impressions-ADHD-Severity. Associations between HRQL and clinical symptoms were assessed with correlations, analyses of variance with post hoc comparisons, and t tests. The Child Health Questionnaire 50-item Parent Form scales assessing psychosocial domains of HRQL were significantly negatively correlated with clinical measures. Improvement in clinical symptoms was associated with corresponding improvement in psychosocial aspects of HRQL. The findings suggest that HRQL instruments can add important information to efficacy measures in clinical trials of ADHD treatment.