Quality of life in chronic illness: children, parents and paediatricians have different, but stable perceptions.

AIM: Quality of life assessments can be helpful to estimate the well-being of chronically ill children. The aim of this study was to investigate the differences in perception of health-related quality of life (HRQoL) among children, parents and paediatricians at the time of diagnosis and after initial treatment in four chronic diseases. METHODS: HRQoL was assessed with the Health Utilities Index mark 3 (HUI3). The HUI3 consists of eight attributes (vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain). RESULTS: Nineteen paediatricians and 60 patients (aged 10-17 years) and their parents with newly diagnosed acute lymphoblastic leukaemia, juvenile idiopathic arthritis, asthma or with cystic fibrosis admitted for pneumonia participated in the study. Health and well-being perceptions were clearly different among paediatricians, parents and patients, both at diagnosis and after initial treatment. Perception differences were more prominent in the subjective attributes, emotion and pain. The agreement for these attributes was 23% and 5%, respectively. Paediatricians assessed the patients to have less pain than the patients and parents did. The reverse was true for the attribute emotion. At follow-up, the agreement was higher for the attributes ambulation and pain. CONCLUSION: At the onset of a chronic disease and after initial treatment, paediatricians, parents and children have different perceptions of the child's quality of life, particularly as to the subjective attributes pain and emotion. In view of these differences in perception among patients, their caregivers and paediatricians, this study suggests that whenever possible, multi-respondent assessment of HRQoL should be considered.

Neuroendocrine dysregulations in sexually abused children and adolescents: a systematic review.

Several studies provided evidence for neuroendocrine dysregulations in adults with a history of child sexual abuse. This review focuses on neuroendocrine studies in sexually abused children and adolescents, dating from January 1, 1990 to January 1, 2007 and obtained from a systematic Medline Indexed literature search to identify endocrine correlates of child sexual abuse. Results from studies on hypothalamic-pituitary-adrenal axis (re)activity showed to be inconclusive. Studies on the sympathetic nervous system provided evidence for a higher baseline activity of this system in sexually abused children and adolescents. Factors contributing to divergent outcomes will be discussed and suggestions for future research will be presented.

Psychological side effects of MTX treatment in juvenile idiopathic arthritis: a pilot study.

OBJECTIVE: To document the psychological side effects of methotrexate (MTX) treatment in children with juvenile idiopathic arthritis (JIA) and to explore the usefulness of psychological therapy to ameliorate these side effects. METHODS: The patients included in this study consisted of 29 patients with JIA using MTX. Of these, ten were referred to a pediatric psychologist because of MTX side effects, and had behavioural therapy to cope with these side effects with a strong behavioural component (anticipatory nausea, anxiety). The behavioural therapy was adapted to age and used systemic desensitization (distraction in a positive atmosphere) or cognitive behavioural therapy (relaxation and overruling negative thoughts by positive ones). The parents of the 29 children were interviewed about MTX treatment and the side effects their child had developed. Parents of children referred to the psychologist were also interviewed for their impression of the results of the behavioural therapy. RESULTS: Prior to the behavioural therapy, nine out of 10 children reported MTX related nausea. Six of these ten were nauseous even before the administration and developed anticipatory nausea. Nine out of ten patients also showed some sign of distress in anticipation of MTX treatment, either orally of via injections. The behavioural therapy they had fully abolished side effects in five children and decreased the severity of nausea and distress in two children. Of the remaining nineteen children, not referred to the pediatric psychologist, 11 reported nausea after MTX treatment and four of these developed anticipatory nausea. In addition, eight of these 18 developed behavioural distress in anticipation of the treatment. CONCLUSION: This study showed that children with JIA who receive MTX treatment frequently develop psychological side effects, such as anticipatory nausea and behavioural distress in anticipation of treatment. This is true for patients selected for reported MTX side effects, as well as for randomly chosen JIA patients using MTX. As MTX is still the first choice in the treatment of severe JIA, more attention should be given to the treatment and prevention of side effects. Psychological intervention can be of help, but further studies are needed on the nature of the side effects, as well as on the prerequisites and efficacy of behavioural therapy.

Growing up with idiopathic short stature: psychosocial development and hormone treatment; a critical review.

To facilitate decisions on interventions in medically referred children with idiopathic short stature, the research on psychosocial functioning of these children, possible risk and protective factors influencing adaptation, and effects of hormone treatment were reviewed. Parents ranked the behaviour of their children on average between normal and below normal. The magnitude of these deviations varied from small to large. Little is known about the children's self-perceived psychosocial functioning. Some risk factors were found: being teased, being juvenilised, being a boy, having a younger but taller sibling, low intelligence, and low socioeconomic status. There have been few studies on the impact of protective factors including temperament, coping strategies, and social support. On average, hormone treatment did not improve psychosocial functioning. The research shows the advantages and disadvantages of hormone treatment that must be considered when choosing a suitable intervention. It is suggested that psychosocial adjustment can be improved by focusing on factors other than height alone.

Chronic fatigue syndrome and health control in adolescents and parents.

AIMS: To explore the locus of health control in adolescents with chronic fatigue syndrome (CFS) and their parents in comparison with healthy adolescents and their parents. METHODS: In this cross-sectional study 32 adolescents with CFS were compared with 167 healthy controls and their respective parents. The Multidimensional Health Locus of Control (MHLC) questionnaire was applied to all participants. RESULTS: There was significantly less internal health control in adolescents with CFS than in healthy controls. An increase of internal health control of one standard deviation was associated with a 61% reduced risk for CFS (OR = 0.39, 95% CI 0.25 to 0.61). Internal health control of the parents was also protective (OR fathers: 0.57 (95% CI 0.38 to 0.87); OR mothers: 0.74 (95% CI 0.50 to 1.09)). The external loci of health control were higher in adolescents with CFS and in their parents. Increased levels of fatigue (56%) were found in the mothers of the adolescents with CFS, in contrast with the fathers who reported a normal percentage of 13. CONCLUSIONS: In comparison with healthy adolescents, adolescents with CFS and their parents show less internal health control. They attribute their health more to external factors, such as chance and physicians. This outcome is of relevance for treatment strategies such as cognitive behaviour therapy, for which health behaviour is the main focus.

A difference in perception of quality of life in chronically ill children was found between parents and pediatricians.

BACKGROUND AND OBJECTIVES: Quality of life measurements can help to estimate the well-being of chronically ill patients, and disclose discrepancies in perception between physicians and patients that might otherwise interfere with the effectiveness of treatment. The objective was to investigate the differences in perception of quality of life between parents of chronically ill children and pediatricians. METHODS: A cross-sectional study was conducted in four tertiary pediatric care centers in The Netherlands. The Health Utilities Index mark 3 (HUI3) was used by 37 pediatricians and 279 parents of patients (children aged 1 to 17 years) with cystic fibrosis admitted either in daycare or for a pneumonia, or patients with newly diagnosed acute lymphoblastic leukemia, juvenile idiopathic arthritis, or asthma. RESULTS: Differences in perception of quality of life between parents and pediatricians appeared to be dependent of the disease. In patients with acute lymphoblastic leukemia (OR 7.4; [95% CI 2.88-18.97], juvenile idiopathic arthritis (4.7; [95% CI 2.00-11.22]), and asthma (2.3; [95% CI 1.13-4.69]) a difference in perception was more likely to occur than in patients with cystic fibrosis admitted in daycare. CONCLUSION: At the onset of a chronic disease, the parents of pediatric patients may be misunderstood by health care professionals, especially in subjective attributes. Assessment of quality of life may contribute to better understanding between pediatricians and parents, and thus may even enhance compliance and treatment effects.

Quality of life in chronic illness: perceptions of parents and paediatricians.

AIMS: To investigate the differences in perception of quality of life between parents of chronically ill children and paediatricians at diagnosis and follow up. Quality of life was assessed using the (HUI3). METHODS: Longitudinal study (July 1999-January 2002) of 37 paediatricians and 181 parents of patients (children aged 1-17 years) with cystic fibrosis admitted for a pneumonia or patients with newly diagnosed acute lymphatic leukaemia, juvenile idiopathic arthritis, or asthma. Main outcome measure was percentage agreement on the attributes of the HUI3 between parents and paediatricians. RESULTS: Differences in perception of health and wellbeing between paediatricians and parents of children with a chronic disease were found, not only at diagnosis but also after a period of follow up. Differences were particularly clear in the subjective attributes emotion (range of agreement 28-68%) and pain/discomfort (range of agreement 11-33%). In all patient groups, at baseline and follow up, the paediatrician assessed the patient to have less pain/discomfort in comparison to the parents. Despite a prolonged patient- paediatrician relationship, differences at follow up did not decrease compared to baseline. CONCLUSION: At the onset of a chronic disease, but also after a period of follow up, quality of life of paediatric patients may be misunderstood by healthcare professionals, especially in the subjective attributes. Systematic assessment of quality of life may contribute to better understanding between physicians and parents.

Quality of life: patients and doctors don't always agree: a meta-analysis.

OBJECTIVE: In addition to traditional clinical markers, quality-of-life assessment can be helpful to estimate the well-being of patients. Discrepancies in perception of well-being between physicians and patients may interfere with the effectiveness of treatment. A systematic review and meta-analysis were performed to explore the (dis-)agreement in quality-of-life assessments between patients and physicians. STUDY DESIGN AND SETTING: Data on the proportion agreement of paired observations were collected from Medline, Embase, Psychlit, and Social Abstracts. RESULTS: Of the 1,316 articles found, six met the selection criteria, four studied the proportion agreement between children and physicians, and all six the proportion agreement between parents and physicians. None examined the magnitude of over- or underestimation by physicians. The agreement was lower in the more subjective domains (0.54-0.77) in comparison to the more objective domains (0.79-0.94). CONCLUSION: Quality-of-life assessment should be integrated in clinical practice. During long-term treatment the perception of the patients' well-being by physicians and patients themselves can easily diverge from each other, resulting in misunderstandings about the treatment and its usefulness in relation to perceived quality of life, and may even become the base for noncompliance.

Psychological adjustment of adolescent girls with chronic fatigue syndrome.

OBJECTIVE: To examine psychosocial problems and adaptation of adolescent girls with chronic fatigue syndrome (CFS). METHODOLOGY: Thirty-six adolescent girls with CFS (mean age: 15.2 years; mean syndrome duration: 19.7 months) who fulfilled the criteria of the Centers for Disease Control and Prevention were examined by interviews regarding premorbid problems and by questionnaires regarding psychosocial functioning and distress, psychological attitudes, and coping resources. Data were compared with normative data. RESULTS: Of the adolescents, 86.1% reported 1 or more premorbid problems (58.3% physical, 38.9% psychological, and 52.8% familial). Normal adjustment was reported for psychosocial self-esteem, social abilities, and attentional abilities. High adjustment to adult social standards of behavior was found, but low perceived competence in specific adolescent domains, such as athletic ability, romance, and participation in recreational activities. The girls reported predominantly internalizing problems. Normal achievement motivation, no debilitating fear of failure, and high internal locus of control were observed. Palliative reaction patterns and optimism were predominantly used as coping strategies. CONCLUSIONS: The large number of premorbid problems suggests a possible contributing factor to the onset of the syndrome, although there were no reference data of healthy adolescents. In distinct domains of psychosocial adjustment, the adolescent girls with CFS showed strengths such as adequate self-esteem and scholastic and social abilities, and weaknesses such as low competence in adolescent-specific tasks and internalizing distress, which may partly be explained by syndrome-specific somatic complaints. The use of optimistic and palliative reaction patterns as coping strategies in this patient group indicates that the patients with CFS seem to retain an active and positive outlook on life, which may result in a rather adequate psychological adaptation to the syndrome, but also in maintenance of the syndrome by exceeding the physical limits brought about by the CFS. Our results on adjustment and coping strategies may be helpful to implement (individual) rehabilitation programs.

High nocturnal melatonin in adolescents with chronic fatigue syndrome.

Decreased quality of sleep is frequently reported by chronic fatigue syndrome (CFS) patients. The pineal hormone melatonin is involved in regulation of sleep. We analyzed the nocturnal rise in melatonin in 13 adolescent CFS patients and 15 healthy age-matched controls. Saliva samples were collected at hourly intervals between 1700 and 0200 h. Nocturnal saliva melatonin levels were significantly higher in CFS patients, compared with controls, at midnight, 0100 h, and 0200 h (P < 0.001). No differences were observed in timing of melatonin increase in saliva between patients and controls. Time of sleep onset and duration of sleep did not differ significantly between patients and controls. However, all CFS patients and only one of the controls in our study group reported unrefreshing sleep. Our data demonstrate that sleep problems in adolescents with CFS are associated with increased melatonin levels during the first part of the night. Based on these data, we suggest that there is no indication for melatonin supplementation in adolescents with CFS.

Social functioning in children with a chronic illness.

Behavioural, cognitive, and affective aspects of social functioning of 107 children with a chronic illness were studied. The aim of the study was twofold: (1) to describe peer interaction of children with a chronic illness in comparison with normative data of healthy children; (2) to examine whether peer interaction was related to the illness characteristics physical restrictions and pain. Peer interaction was assessed with measures of social activities (CBCL), parent-reported social skills (CABS), child-reported social skills (MESSY), social self-esteem (SPPC), and social anxiety (SASK). Results showed no differences between diagnosis groups, suggesting that the social consequences of chronic illness are not diagnosis specific. Compared with healthy norms, chronically ill children reported less aggressive behaviour. The parent-report measures suggested a similar trend. Children with chronic illness also tended to display more submissive behaviour than healthy norms, as perceived by their parents. With regard to illness characteristics, both physical restrictions and pain were associated with restricted social activities, but not with other measures of social peer interaction. Children who display submissive behaviour and children who are restricted in their social activities should receive extra attention because they are especially vulnerable for problems in their social development.

The psychological and social functioning of 14 children and 12 adolescents after Ilizarov leg lengthening.

We studied the psychological and social impact of the Ilizarov leg lengthening procedure in 26 patients (aged 6-17 years), who had completed the treatment at least 2 months previously. Measurements of depression and anxiety were performed preoperatively and at follow-up. Questions about functioning at school, daily life activities and treatment-related experiences were answered by the patient and his/her parents. The school or work results showed no significant decline during the lengthening procedure. Serious sleeping problems occurred during the procedure. There was no subjective improvement in physical skill after the procedure and almost one-fourth of the children still had complaints about their leg. We conclude that the Ilizarov procedure caused no serious psychological disturbances.

Psychological, behavioural, and social adjustment in children and adolescents with juvenile chronic arthritis.

OBJECTIVE: To assess the psychological, behavioural and social adjustment of children (7-11 years) and adolescents (12-16 years) with juvenile chronic arthritis (JCA). Higher rates of maladjustment were expected to be found in these patients. METHODS: Self report questionnaires were used within the context of personal interviews. Family functioning and social support were studied as well. Forty seven patients with JCA, 52 healthy peers and their respective parents participated in the study. RESULTS: Self esteem, perceived competence and body image in patients with JCA were as positive as they were in healthy participants. There were no differences between ill and healthy youngsters with respect to the incidence of psychopathology. Patients with JCA, in general, perceived themselves as socially competent, but they seemed to have somewhat less opportunity or energy to participate in social activities. Children with JCA showed a high level of aspiration to cope with social expectations. This aspiration seemed to be even stronger in case the disease caused more strains, for example, in periods of inflammation and in the systemic onset type. The high level of social adjustment in children with JCA seemed to be supported by highly cohesive family structures. Generally, adolescents with JCA experienced much social support. CONCLUSIONS: In contrast with our expectation, children and adolescents with JCA seemeed to cope quite well with the psychological and social consequences of their long term condition. For future studies, it is hypothesised that the high levels of adaptation might imply an enduring psychological strain, which is reflected in an altered function of the autonomic nervous system.

Disturbed neuroendocrine-immune interactions in chronic fatigue syndrome.

The present study was designed to investigate the interaction between neuroendocrine mediators and the immune system in chronic fatigue syndrome (CFS). We examined the sensitivity of the immune system to the glucocorticoid agonist dexamethasone and the beta2-adrenergic agonist terbutaline in 15 adolescent girls with CFS and 14 age- and sex-matched controls. Dexamethasone inhibits T-cell proliferation in healthy controls and in CFS patients. However, the maximal effect of dexamethasone on T-cell proliferation is significantly reduced in CFS patients as compared with controls. The beta2-adrenergic receptor agonist terbutaline inhibits tumor necrosis factor-alpha production and enhances interleukin-10 production by monocytes. Our data demonstrate that the capacity of a beta2-adrenergic agonist to regulate the production of these two cytokines is also reduced in CFS patients. We did not observe differences in baseline or CRH-induced cortisol and ACTH between CFS patients and controls. Baseline noradrenaline was similar in CFS and controls, whereas baseline adrenaline levels were significantly higher in CFS patients. We conclude that CFS is accompanied by a relative resistance of the immune system to regulation by the neuroendocrine system. Based on these data, we suggest CFS should be viewed as a disease of deficient neuroendocrine-immune communication.

Pain in childhood rheumatic arthritis.

Pain is a major symptom in chronic inflammatory arthropathies such as rheumatoid arthritis and affects the health status of arthritis patients negatively. There has been much debate about the role of pain in juvenile chronic arthritis and this review deals with the controversies about this subject. Pain in children is best understood as a multifactorial concept in which pain is the result of somatosensory, behavioural and environmental factors. The role of the different factors contributing to pain will be assessed with special reference to mechanisms relevant to children with chronic pain, the various instruments to measure pain, such as visual analogue scales and algometry, and the treatment of chronic pain in juvenile chronic arthritis. For a true understanding of chronic pain in children, these multidimensional assessments should be integrated into a biobehavioral model, by means of which a better understanding should lead to new therapeutic interventions for one of the most common symptoms of rheumatic diseases in childhood: pain.