Quality of life and current coping in young adult survivors of childhood cancer: Positive expectations about the further course of the disease were correlated with better quality of life

OBJECTIVES: As a result of advances in the treatment of childhood cancer many patients who may previously have had a limited life expectancy, are now surviving into adulthood. More insight is needed into the long-term adjustment of young adult survivors of childhood cancer. The purpose of this study was to (1) assess health-related quality of life (HRQoL), and (2) to explore the role of cognitive coping in relation to HRQoL. METHODS: HRQoL of 353 Dutch young adult survivors of childhood cancer was compared with HRQoL of 507 peers. Linear regression analyses predicted survivors' HRQoL by cognitive coping, independent of the impact of demographics and medical variables. RESULTS: Survivors reported a lower HRQoL than their peers. Health status was the best predictor of the Physical Component Scale of the RAND-36; health status and cognitive coping contributed almost equally well to the Mental Component Scale. The explanatory value of cognitive coping could mainly be attributed to the use of predictive control strategies. CONCLUSIONS: Because current coping seemed to be an important predictor of HRQoL, interventions directed at the coping strategies of survivors should be useful. The strong association between predictive coping and HRQoL stresses the importance of focusing at having positive expectations about the further course of the diseas

Children with cancer

Some specific aspects of communication in pediatric oncology will be outlined in this chapter. These include openness about the disease, which has become increasingly important. Furthermore, the law of double protection, a self-protective strategy used by children, parents, and hospital staff, will be sketched out. It is very striking that protection is often achieved through protection of the other. Several examples of this strategy will be presented. Finally, attention will be paid to communication about death in the palliative phas

Health-related quality of life problems of children aged 8-11 years with a chronic disease

In paediatric research, Health-Related Quality-of-Life (HRQoL) has received increasing recognition as an important health outcome. This study aimed to investigate the nature and prevalence of HRQoL problems in children with different chronic diseases. Data were available on 318 children aged 8-11 years with different diseases: congenital heart disease (n = 50); coeliac disease (n = 105); asthma (n = 32); cancer (n = 23); juvenile chronic arthritis (n = 45); children with capillary haemangioma (n = 25) and severe meningococcal disease (n = 38). They all answered a validated generic instrument [TNO-AZL Children's Quality of life questionnaire] (TACQoL), in the outpatient clinic or at home. Analyses of variance were performed to investigate differences in mean scores for children with chronic conditions in comparison to healthy children. Prevalence of children at risk for substantial HRQoL problems was based on the 25th percentile in the norm population. In comparison to healthy children, only a small number of differences were found in mean scores of children studied. In contrast, prevalence of HRQoL problems in children with chronic diseases was higher in several domains. It is concluded that using an indicator variable of the norm 25th percentile seems important in identifying at-risk children with chronic disease. © 2007 Informa UK Ltd

Explorative study on the aftercare of pediatric brain tumor survivors: A parents' perspective

PURPOSE: Whilst the need for aftercare for long-term sequelae of brain tumor survivors is well known and evident, information from a parent’s perspective is lacking on whether the need for aftercare is detected in time, and whether the aftercare is timely initiated and meets the needs for aftercare. METHODS: A survey regarding aftercare in five domains of long-term sequelae (neurocognitive, physical, emotional, social and parenting problems) was sent to 57 parents of survivors treated for a brain tumor in our center. RESULTS: Forty-two (74%) parents participated in this study. With a mean period of 8.1 years (SD = 3.9) since start of treatment, the majority of the survivors (mean age = 14.7 years, SD = 3.8) needed aftercare in several domains of functioning. This need was highest and most met for physical sequelae (N = 34), and lowest but still substantial and least met for parental difficulties (N = 11). Parents of survivors with surgery only as treatment reported a similar need for aftercare as those of survivors with adjuvant therapy. Most of the survivors received aftercare; however, substantial delay of aftercare and self-referral for aftercare were frequently reported. Furthermore, parents showed a lack of knowledge about and use of aftercare services. CONCLUSIONS: Increased awareness for the need for psychosocial aftercare is required. Coaching, psycho-educative programs about coping with the long-term sequelae and information about available specialized aftercare services are required to meet the needs of brain tumor survivors and their parents more adequately

Psychosocial indicators of health related quality of life in children with cancer 2 months after end of succesful treatment

Contains fulltext : 52983.pdf (publisher's version ) (Closed access)The purpose of the study was to identify psychosocial correlates of Health-Related Quality of Life (HRQoL) in pediatric cancer patients after completion of cancer treatment. Multiple regression analyses were performed to predict self-reported HRQoL of 52 patients aged 8 to 15 years, and parent-reported HRQoL of 54 patients aged 1 to 5 years. Cognitive coping, family functioning, parental emotional reactions, communication about the disease, and several medical variables were included in the regression models. Better HRQoL was especially associated with more positive expectations of the further course of the disease and less frequent parental asking after disease-related emotions of the child. Interventions should include "positive thinking" as a coping strategy. Several other psychosocial variables were indicative of better HRQoL but further research is needed to confirm and to understand the relationship between psychosocial variables and HRQoL

Quality of life, developmental milestones, and self-esteem of young adults with congenital hypothyroidism diagnosed by neonatal screening

Contains fulltext : 71281.pdf (publisher's version ) (Closed access)CONTEXT: With advances in the treatment of congenital hypothyroidism (CH), the neuropsychological functioning of CH patients is considerably improved. Although much is written about cognitive and motor development, little is known about emotional and social consequences for patients growing up with CH, diagnosed by neonatal screening. OBJECTIVES: The objectives of the study were to: 1) compare health-related quality of life (HRQoL), developmental milestones also called course of life (CoL), sociodemographical outcomes, and self-esteem of CH patients with the general population; and 2) explore whether severity of CH was related to these outcomes. DESIGN/SETTING/PATIENTS: A total of 69 young adults with CH, born in The Netherlands in 1981-1982, completed the "TNO-AZL Questionnaire for Adult's Health related Quality of Life" questionnaire, the CoL survey (developmental milestones and sociodemographical outcomes), and a self-esteem questionnaire. MAIN OUTCOME MEASURES: HRQoL, CoL, social demographical outcomes, and self-esteem in young adults with CH were determined. RESULTS: CH patients are more often at risk for HRQoL impairment and reported lower HRQoL on several domains (cognitive functioning, P < 0.0001; sleeping, P < 0.004; pain, P < 0.0001; daily activities, P < 0.004; vitality, P < 0.0001; aggressiveness, P < 0.0001; and depressive moods, P < 0.0001) compared with healthy adults. Patients reported a lower self-esteem (P < 0.005) and had a delayed CoL on the domain of social development (P < 0.016). There were no significant within-group differences between the severity groups for HRQoL, CoL, and self-esteem. CONCLUSIONS: Negative consequences in terms of HRQoL, development, and self-esteem are prevalent in young adults with CH. Health care physicians should be attentive to these consequences and provide additional support (emotional and educational guidance) if necessary

A community-based survey of posttraumatic stress disorder in the Netherlands

In this study, the lifetime prevalence of stressful events and current posttraumatic stress disorder (PTSD) in the general adult population in theNetherlands were examined, and risk groups for PTSD were determined. A representative sample of 2,238 adults (≥18 years) in the Netherlands completed digital questionnaires by computer-assisted self-interviewing. In total, 52.2% of the population reported at least one stressful event throughout their life. The estimated prevalence of current PTSD in the total population was 3.8%. Rape and physical assault were the stressful events most likely to be associated with PTSD, witness of injury the least likely. Stressful medical events were moderately associated with PTSD. Prevalence of PTSD was elevated among single women and middle-aged men

Health- related quality of life and self-worth in 10-year old children with congenital hypothyroidism diagnosed by neonatal screening

Contains fulltext : 108082.pdf (publisher's version ) (Open Access)ABSTRACT: BACKGROUND: Much is written about cognitive and motor development; less is known about social and emotional consequences of growing up with congenital hypothyroidism (CH).The objectives of the study were: (1) to compare health related quality of life (HRQoL) and self-worth of 10 year old patients with CH with the general population; (2) to explore associations of disease factors, IQ and motor skills with the outcomes. METHODS: Children with CH and their parents completed several questionnaires. Patients were classified to 'severe CH, n = 41' or 'moderate/mild CH, n = 41' based on pre-treatment FT4 concentration.Differences between CH and the general population were tested by analysis of covariance and one sample t-tests (mean scale scores HRQoL and self-worth), chi-square tests and binomial tests (% at risk of impaired HRQoL and self-worth). Linear regression analyses corrected for gender were conducted to explore associations of the outcomes with disease factors, IQ and motor skills. RESULTS: Patients with CH reported lower mean HRQoL on motor, cognitive and social functioning, and on autonomy and positive emotions (p < 0.0001). Patients were also more often at risk for impaired HRQoL and self-worth. No differences were found between the severity groups. Lower IQ was only significant associated with worse cognitive HRQoL. Initial FT4 plasma, age at onset of therapy, initial T4 dose and motor skills were not significantly associated with HRQoL and self-worth. CONCLUSIONS: Negative consequences in terms of HRQoL and self-worth are prevalent in children with CH, independent of disease factors, IQ and motor skills. Physicians should to be attentive to these consequences and provide attention and supportive care

Intellectual and motor development of young adults with congenital hypothyroidism diagnosed by neonatal screening

Contains fulltext : 35756.pdf (publisher's version ) (Open Access)CONTEXT: Long-term follow-up data on cognitive and motor functioning in adult patients with congenital hypothyroidism, diagnosed by neonatal screening, are scarce. Hence, it is still unclear whether the frequently reported cognitive and motor deficits observed during childhood persist in adulthood. OBJECTIVE: The objective of this study was to examine cognitive and motor functioning in young adults with congenital hypothyroidism, born in the first 2 yr after the introduction of the Dutch neonatal screening program. DESIGN/SETTING/PATIENTS: Seventy patients were tested (mean age, 21.5 yr); 49 of them were previously tested at 9.5 yr. The median age at the start of treatment was 28 d (range, 4-293 d). Congenital hypothyroidism was classified as severe, moderate, or mild, according to pretreatment T(4) concentrations. MAIN OUTCOME MEASUREMENT: The main outcome measurement was the influence of the severity of congenital hypothyroidism and age at which T(4) supplementation was started on cognitive and motor outcome. RESULTS: Patients, particularly those with severe congenital hypothyroidism, had significantly higher (i.e. worse) motor scores (total score, 7.8; ball skills, 2.0; balance, 4.1) compared with controls (total score, 3.2; ball skills, 0.7; balance, 1.1), and lower full-scale (95.8), verbal (96.4), and performance (95.6) intelligence quotient (IQ) scores than the normal population. No significant change in IQ from childhood to adulthood was found, and for the majority of patients, motor score classification remained the same. The severity of congenital hypothyroidism, but not the starting day of treatment, was correlated with IQ and motor scores. CONCLUSIONS: It is concluded that the severity of congenital hypothyroidism, but not the timing of treatment initiation, is an important factor determining long-term cognitive and motor outcome. Clearly, detrimental effects on developmental outcome in patients with congenital hypothyroidism persist over time