Health-related quality of life in perinatally HIV-infected children in the Netherlands

Combination antiretroviral therapy (cART) can alter HIV infection in children into a chronic condition. Studies investigating health-related quality of life (HRQoL) in HIV-infected children are scarce, and lacking from Western Europe. This study aimed to compare the HRQoL of clinically stable perinatally HIV-infected children to healthy, socioeconomically (SES)-matched controls as well as the Dutch norm population, and to explore associations between HIV and cART-related factors with HRQoL. HIV-infected and healthy children aged 8–18 years completed the Pediatric Quality of Life Inventory? 4.0 (PedsQL?). We determined differences between groups on PedsQL? mean scores, and the proportion of children with an impaired HRQoL per group (≥1 SD lower than the Dutch norm population). Logistic regression models were used to explore associations between disease-related factors and HRQoL impairment. In total, 33 HIV-infected and 37 healthy children were included. There were no differences in the mean PedsQL? subscales between HIV-infected children and both control groups. The proportion of children with an impaired HRQoL was higher in the HIV-infected group (27%) as compared to the healthy control group (22%) and the Dutch norm (14%) on the school functioning subscale (HIV vs. Dutch norm: P?=?.045). Mean scores of HRQoL of perinatally HIV-infected children in the Netherlands were not different from a SES-matched control group, or from the Dutch norm population. However, the HIV-infected group did contain more children with HRQoL impairment, suggesting that HIV-infected children in the Netherlands are still more vulnerable to a compromised HRQoL.     

Psychosocial implications during adolescence for infant heart transplant recipients

Background & Objectives:

As more heart transplant recipients survive into late adolescence, research addressing long-term psychosocial and neurodevelopmental outcomes is imperative. The limited literature available suggests risk for psychosocial difficulties and lower cognitive, academic, and neuropsychological functioning. This paper reviews topic-related literature and provides preliminary data examining psychosocial and neuropsychological functioning of adolescents who received their heart transplant during infancy.

Method:

This paper offers a literature review AND presents preliminary data from studies conducted through Loma Linda University Children’s Hospital (LLUCH). Study one examined psychosocial functioning and quality of life of adolescent infant heart transplant recipients. In study two, cognitive, academic, and neuropsychological data were analyzed.

Results:

Study 1: Overall psychosocial functioning fell in the Average range, however, a significant percentage of participants presented with difficulties on one or more of the psychosocial domains. Quality of life was also within normal limits, though concerns with general health and bodily discomfort were noted. Study 2: Cognitive functioning was assessed to be Below Average, with 43-62% of the participants demonstrating significant impairments. Neuropsychological functioning yielded significant weakness on language functioning, and mild weakness on visual-motor integration and executive functioning.

Conclusion:

While the majority of the participants demonstrate psychosocial resiliency, a subgroup present with difficulties suggesting the need for intervention. Cognitive/neuropsychological functioning suggests poorer functioning with patterns similar to other high-risk pediatric populations. These results are preliminary and further research on long-term psychosocial and neuropsychological development of pediatric heart transplant recipients is needed to better understand and ameliorate developmental trajectories.     

Neuropsychological and psychiatric outcomes following coronary surgery or angioplasty: a comparative study

BACKGROUND: Medical outcomes following coronary artery bypass grafting (CABG) or percutaneous transluminal coronary angioplasty (PTCA) are similar, but few studies have compared neuropsychological outcomes after these procedures. METHODS: A retrospective study compared detailed neurocognitive and psychosocial functioning in 32 patients (CABG, n = 16; PTCA, n = 16) aged 61 +/- 6 years, 9-15 months after coronary revascularisation. Subjects were tested for executive functioning, speed of processing/attention and learning/memory, significant psychopathology (General Health Questionnaire, GHQ) and psychosocial functioning (Short Form (SF)-36 health survey). In the prospective study, 55 patients completed GHQ and SF-36 surveys, the day prior to and 6 months following PTCA. RESULTS: There were no significant differences between the CABG and PTCA groups for neuropsychological or psychosocial end-points (P > 0.20). Executive functioning in both groups, however, was worse than for healthy population controls (P < 0.01). The PTCA patients were significantly more likely than CABG patients to have psychiatric abnormality (GHQ Score >4; P < 0.01). After PTCA, however, there was a significant improvement in the GHQ and SF-36 scores (P < 0.05). CONCLUSIONS: Although executive function is often impaired after coronary revascularisation, neuropsychological status appears equivalent after CABG or PTCA. Psychiatric pathology is common in patients undergoing PTCA, but improves after this intervention.     

Changes in neuropsychological functioning during alcohol detoxification

This study investigates changes in neuropsychological functioning during early abstinence from alcohol. 30 alcohol-dependent inpatients were tested at intake (day 4 of admission) and post detoxification (day 26), using a test-retest design. The neuropsychological battery included measures of pre-morbid IQ, full-scale IQ, verbal and non-verbal measures of memory and executive function. IQ was within the normal range at intake and comparable with age-adjusted normative values and there were some impairments in memory and executive function. There were significant increases in performance scores post detoxification in working memory, verbal fluency and verbal inhibition but not in non-verbal executive function tasks (mental flexibility and planning ability). Despite increased scores on tests of verbal and memory skills after 3 weeks of abstinence, complex executive abilities showed little change. These may have a negative impact on engagement and response to treatment and compromise clinical outcomes, heightening the risk of relapse.     

Caring for perinatally HIV-infected children: call for mental care for the children and the caregivers

Antiretroviral therapy has dramatically improved the survival rate of perinatally HIV-infected children. For them to thrive, it is necessary to understand better their mental health issues. Caregivers play an important role in children’s daily care and caregiver mental health may relate to children’s mental health. However, this association has rarely been studied. Accordingly, the present study examined the associations between depression of caregivers and that of perinatally HIV-infected children in Kigali, Rwanda. We conducted a cross-sectional study of 475 perinatally HIV-infected children aged 7–14 years and their caregivers. We collected children’s depression score data via face-to-face interviews with children using the Beck Depression Inventory for Youth. We also collected sociodemographic data using a semi-structured questionnaire with caregivers. In addition, we measured children’s weight, height, and collected their clinical records. Data were analyzed via linear and logistic regression analyses. Of all children, 22% had symptoms of depression. Among those who had depressive symptoms (n=?105), 49% had never received psychological support. In both the linear and logistic regression analysis, caregiver’s high depression scores were positively associated with children’s higher depression scores (AOR: 3.064, 95% CI: 1.723, 4.855, and AOR: 1.759, 95% CI: 1.129, 2.740, respectively). Taking Efavirenz and low height-for-age were also positively associated with higher depression scores among HIV-infected children. Mental health needs to be addressed to improve quality of life of perinatally HIV-infected children. Caregiver’s depression was positively associated with children’s depressive symptoms. Caring for both children and the caregivers’ mental health may prevent the mutual fostering of depression.     

Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators

Few data exist on the quality of life in children and adolescents with implantable cardioverter-defibrillators (ICDs). The objective of this study was to determine whether anxiety, depression, family functioning, and quality of life are related to cardiac illness severity in pediatric patients with ICDs. The subjects were 20 patients (mean age 14.8 years; median 15.1, range 9 to 19) who had an ICD implantation a mean 1.4 years (median 0.1, range 0 to 6) before the study. The patients completed the Revised Children's Manifest Anxiety Scale, Reynold's Adolescent/Child Depression Scales, Child Health Questionnaire-87, and the Worries About ICDs Scale. The parents completed the Impact-on-Family Scale and the Child Health Questionnaire (CHQ-50). The Defibrillator Severity Index assessed cardiac severity. The rates of anxiety or depression were not increased, although the patients appeared to experience a greater need for social acceptance. Parent ratings of overall family functioning did not differ significantly from normative sample means. Parents reported significantly lower CHQ-50 summary physical functioning scores than scores of a normative United States sample, whereas there was no significant difference for the CHQ-50 summary psychosocial score. Caregivers perceived that their children had a lower quality of life when asked about their child's physical functioning, functioning in the social-physical role, and general health perceptions. Despite the overall nonsignificance of the psychosocial summary score, the social emotional/behavioral role, and the emotional impact their child's health had on themselves, subscales were all significantly lower than the normative sample. Cardiac illness severity was not significantly associated with anxiety, depression, quality of life, or family functioning. However, significant associations were found among measures of anxiety, depression, family functioning, and quality of life. Overall, most pediatric patients with ICDs appear to be a resilient group of youngsters. Their quality of life was more strongly correlated with their feelings of anxiety and depression as well as their family functioning than to the severity of their cardiac illness.     

Covid-fatigued? A longitudinal study of Norwegian older adults’ psychosocial well-being before and during early and later stages of the COVID-19 pandemic

As the pandemic continues, many older adults are facing prolonged isolation and stress while having less access to traditional ways of coping. There is widespread concern that the situation is increasingly taking its toll on older adults’ psychological and social well-being. We use linear mixed models to examine psychosocial impacts and predictors thereof among older Norwegians in early and later stages of the pandemic. Longitudinal data were collected online in the Norwegian Counties Public Health Survey right before the pandemic and in June and November–December 2020 in two counties (baseline n = 4,104; age 65–92). Outcomes include loneliness (single item, UCLA3), psychological ill-being (worried, anxious, depressed), and psychological well-being (satisfied, engaged, happy). From before to three months into the pandemic men’s psychosocial well-being remained stable, whereas women’s slightly declined. Five months later we observe broad and substantial declines in psychosocial well-being. These impacts disproportionately affect women (all outcomes) and single and older individuals (loneliness only) and are not moderated by educational level, urbanicity, or whether self or partner are reported “at risk” due to health problems. Pre-pandemic low social support and high psychological distress predict relatively improved psychosocial well-being. Older Norwegians seemed to manage the pandemic’s early stage without clear psychosocial impacts. However, we observe notably compromised well-being during the second wave of COVID-19 in late 2020. Lessons learned about the nature and distribution of the psychosocial impacts of prolonged health-threats and social distancing provide valuable knowledge for intervention design during this and future pandemics.     

Stronger feelings of loneliness among Moroccan and Turkish older adults in the Netherlands: in search for an explanation

The prevalence of loneliness among Turkish–Dutch and Moroccan–Dutch older adults is higher than among Dutch older adults of non-migrant origin. Three explanations may account for this difference: (1) differential item functioning might result in scores that vary in intensity and in meaning across categories; (2) the position of migrants is much more vulnerable than that of non-migrants; (3) the lack of protective factors has more severe consequences for older migrants. The Longitudinal Aging Study Amsterdam interviewed 176 persons born in Morocco and 235 born in Turkey, aged 55–66 and living in urban areas. They are compared with a matched sample of 292 Dutch persons. The psychometric properties of the loneliness scale are satisfying, although there is some differential item functioning. Older migrants have more frequent social contacts but are at a disadvantage in other domains. Taking into account differences in social participation, satisfaction with income, mastery and depressive symptoms, the difference between older migrants’ and non-migrants’ loneliness is reduced by more than half. Protective factors are equally important for older migrants and non-migrants. Exceptions are marriage (less protective for Moroccans), frequent contact with children/children-in-law (mostly for Turks), a higher educational level (protects Moroccans and Turks) and better physical functioning (less for Turks). Being an older migrant and belonging to a minority might further contribute to feelings of loneliness. Interventions can be directed at stimulating social contact, but also at aspects like enhancing the appreciation of their social status and avoiding negative interpretations of a situation.Electronic supplementary materialThe online version of this article (10.1007/s10433-020-00562-x) contains supplementary material, which is available to authorized users.     

Neurocognitive Functioning of Children and Adolescents with Mild-to-Moderate Chronic Kidney Disease

Summary

Background and objectives

Few data exist on the neurocognitive functioning of children with mild-to-moderate chronic kidney disease (CKD). The primary objectives of this paper are (1) to determine the neurocognitive status in this population and (2) to identify sociodemographic and health-status variables associated with neurocognitive functioning.

Design, setting, participants, & measurements

This was a cross-sectional study of 368 children, aged 6 to 16 years, from the Chronic Kidney Disease in Children (CKiD) cohort. Median iGFR was 43 ml/min per 1.73 m², and the median duration of CKD was 8.0 years. Approximately 26% had underlying glomerular disease. Measures of intelligence, academic achievement, attention regulation, and executive functioning were obtained at study entry. The prevalence of neurocognitive deficits was determined by comparing participant scores on each measure of neurocognitive functioning with normative data. The association between hypothesized predictors of neurocognitive dysfunction was evaluated using multivariate regression analyses.

Results

Neurocognitive functioning was within the average range for the entire group; however, 21% to 40% of participants scored at least one SD below the mean on measures of intelligence quotient (IQ), academic achievement, attention regulation, or executive functioning. Higher iohexol-based GFR (iGFR) predicted a lesser risk for poor performance on measures of executive function. Participants having elevated proteinuria (i.e., urine protein/creatinine >2) scored lower on verbal IQ, full-scale IQ, and attention variability than those without elevated proteinuria.

Conclusions

Whereas most children with mild-to-moderate CKD have no major neurocognitive deficits, a substantial percentage did show neurocognitive dysfunction that places them at risk for poor long-term educational and occupational outcomes.     

Reproductive health,social life and plans for the future of adolescents growing-up with HIV: a case-control study in Thailand

Most perinatally HIV-infected children receiving antiretroviral treatment now survive into adolescence. This is a period when young people experience puberty, shape their sexual identity and initiate their own social life. The aim of our analysis was to compare aspects of the sexual and reproductive health, social life and plans for the future of perinatally HIV-infected adolescents (PHIVAs) with a control group from the general population. We used data from the Teens Living with Antiretrovirals (TEEWA) survey carried out from 2010 to 2012 in Thailand among PHIVAs aged 12–19 years. Adolescents completed a self-administered questionnaire focusing on their daily life. Each PHIVA (case) was matched on sex, age and place of residence with a randomly selected adolescent from the general population (control). Analysis was stratified by gender and age; McNemar’s test was used to compare cases and controls. A total of 1142 adolescents (571 cases and 571 controls) were included in the analysis, 42% boys and 58% girls. Cases experienced puberty delay compared to controls (p?<?0.01). Cases and controls did not differ in terms of sex education, sexual initiation, romantic relationships or friendships, and risky behaviours. However, PHIVAs were less likely to attend the education system (p?<?0.01), to plan for marriage (p?<?0.01) or parenthood (p?<?0.01). PHIVAs do not differ substantially from controls in terms of sexual and social life. Yet, affirmative action policies could help counterbalance their educational handicap. Provision of psychosocial support could enhance their ability to make informed decisions with regards to family formation.     

Health-related quality of life in children with newly diagnosed immune thrombocytopenia

Despite its generally transient and benign course, childhood immune thrombocytopenia has a large impact on health-related quality of life. Recently published guidelines state that quality of life should be taken into account while making decisions on management in childhood immune thrombocytopenia. We, therefore, assessed health-related quality of life in children with newly diagnosed immune thrombocytopenia in a prospective multicenter study. One hundred and seven children aged 6 months-16 years (mean age 5.57 years) were included. We used Pediatric Quality of Life Inventory™ and Kids’ ITP Tools questionnaires at diagnosis and during standardized follow-up. Scores on the Pediatric Quality of Life Inventory™ Core Scales were compared with those of healthy children. Relationships between health-related quality of life scores and treatment modality, bleeding tendency and course of the disease were examined. Kids’ ITP Tools proxy reports and parent self-reports showed significant higher health-related quality of life scores in children who recovered than in children with persistent immune thrombocytopenia (at 3 months: Kids’ ITP Tools parent self-report score 80.85 for recovered patients (n=69) versus 58.98 for patients with persistent disease (n=21), P<0.001). No significant differences in health-related quality of life were found between children with mild or moderate bleeding or between children who received intravenous immunoglobulin or children who were carefully observed. In conclusion, health-related quality of life of children with newly diagnosed immune thrombocytopenia is not influenced by treatment modality or bleeding severity, but only by clinical course of the disease. (Dutch Trial Register identifier: NTR TC1563)     

Transfer is not a transition – voices of Jamaican adolescents with HIV and their health care providers

Increasing access to antiretroviral therapy in resource-limited settings (RLS) has resulted in the survival of perinatally HIV-infected children into adulthood. We characterized the transition process from pediatric to adult care by conducting semi-structured interviews of HIV-infected adolescents and health care providers in Jamaica. Using an inductive content analytic approach, four themes emerged: (1) Transition should be holistic and a process; (2) Pediatric clinics were like families; (3) Rootedness in the pediatric clinic; and (4) Need for adolescent-centered services to bridge the gap between pediatric and adult-centered services. Adolescent informed- and centered-transition approach may result in better outcomes for HIV-infected adolescents.     

The Developmental and Family Services Unit--a model AIDS project serving developmentally disabled children and their families

This paper describes a model program that uses a multidisciplinary team to assess the developmental and psychosocial needs of HIV-infected children and their families. The objective of the program is to assess the needs of the children, in order to provide rehabilitative and psychosocial services; and to improve the quality of life by optimizing developmental functioning. The team includes developmental pediatricians, social workers, psychologists, a medical ethicist, physiatrist, psycho-educational specialist, and occupational, physical, and language therapists, each of whom perform complete evaluations. A weekly conference results in the formation of an individual Family Service Plan for each child and family. Forty children have been evaluated and are in program. Family compositions were varied and non-traditional. The disabilities and rehabilitative needs differed as well. The most frequently required services were occupational therapy and psychosocial intervention, to increase parental coping skills in handling disabled, chronically ill children. Children with HIV infection are living longer and will have serious deficits. The need to develop services to address the unique developmental and psychosocial needs of the children and families iS paramount.     

Neuropsychological and behavioral correlates of obstructive sleep apnea syndrome in children: A preliminary study

Study Objectives: The purpose of this pilot study was to evaluate a group of children with mild to moderate Obstructive Sleep Apnea Syndrome (OSAS) for baseline neurocognitive deficits and behavioral dysfunction. A subset of the sample were also reassessed, using the same test battery, after treatment with adenotonsillectomy.Design: Baseline and post-treatment neuropsychological and behavioral assessment.Setting: Pediatric sleep disorders clinic at a children’s teaching hospital.Patients: 18 children (12 males, 6 females, mean age 7.3 years ±2.0) meeting polysomnographic criteria for OSAS underwent baseline assessment; 8 children (6 males, 2 females, mean age 8.4 years ±2.6) also completed the post-treatment assessment phase.Measurements: An age appropriate neuropsychological battery including measures of global cognitive functioning, language, executive functioning and attention, memory, visual perception/visual motor skills and motor skills; two parent rating scales of behavior.Results: Modest impairments, largely in executive functioning/attention and motor skills, were found at baseline. Parents endorsed a variety of behavioral problems, especially somatic complaints and problems with learning. There appeared to be relatively little association between impairment and disease severity, although there was a trend for the children with less severe disease, who were also older, to have relatively more behavioral problems. Post treatment, there were modest improvements in executive functioning/attention and motor skills, as well as in parent-reported internalizing and externalizing behaviors.Conclusions: The preliminary results with a small sample suggest mild deficits in executive functions and motor skills in children with mild to moderate OSAS, with modest improvements in the same neuropsychological domains post-treatment. A variety of parent-reported behavioral problems were found at baseline, again with modest improvement post-adenotonsillectomy.     

Social adjustment in three cultures: data from families affected by chronic blood disorders. A sibling study

This study explores the rate of psychosocial dysfunction in affected and unaffected children from families with haemophilia or beta-thalassaemia, as part of a cross-sectional, multicentre study into the resilience of 115 families with blood disorders. Sociodemographic and developmental data were collected from the parents using a standardized and semi-structured interview format, and medical data were obtained from the clinician. The children's social functioning over the year prior to the assessment was assessed with The Social Adjustment Scale adapted for school-aged children. Children with beta-thalassaemia showed significantly higher rates of social dysfunction than their unaffected siblings or children with haemophilia and their siblings. Older children showed significantly higher social dysfunction at school. The high rate of social dysfunction in children with beta-thalassaemia compared with unaffected siblings is likely to have a basis in the negative experiences associated with their medical problems. In contrast, the therapeutic advances in haemophilia allows boys to lead an almost normal life. Overall, the rates of social dysfunction in families with both these disorders proved commoner than reported in population surveys, but with the unavailability of local population controls, caution needs to be exercised in the interpretation of this finding.     

Contributions of Disease Severity,Psychosocial Factors,and Cognition to Behavioral Functioning in US Youth Perinatally Exposed to HIV

Among perinatally HIV-infected (PHIV) and perinatally HIV-exposed, uninfected (PHEU) youth, we evaluated the contributions of home environment, psychosocial, and demographic factors and, among PHIV only, HIV disease severity and antiretroviral treatment (ART), to cognitive functioning (CF) and behavioral functioning (BF). A structural equation modeling (SEM) approach was utilized. Exploratory factor analysis was used to reduce predictor variables to major latent factors. SEMs were developed to measure associations between the latent factors and CF and BF outcomes. Participants included 231 PHIV and 151 PHEU youth (mean age = 10.9 years) enrolled in the PHACS adolescent master protocol. Youth and caregivers completed assessments of CF, BF, psychosocial factors and HIV health. Medical data were also collected. Clusters of predictors were identified, establishing four parsimonious SEMs: child-assessed and caregiver-assessed BF in PHIV and PHEU youth. Among both groups, higher caregiver-child stress predicted worse BF. Caregiver resources and two disease severity variables, late presenter and better past HIV health, were significant predictors of CF in PHIV youth. Higher youth CF was associated with better caregiver-reported BF in both groups. Caregiver resources predicted caregiver-reported BF in PHEU youth, which was mediated via youth CF. Among PHIV youth, better past HIV health and caregiver resources mediated the effects of CF on caregiver-assessed BF. Using SEMs, we found a deleterious impact of caregiver and child stress on BF in both groups and of HIV disease factors on the CF of PHIV youth, reinforcing the importance of early comprehensive intervention to reduce risks for impairment.     

Cognitive impairment in HIV infection.

HIV-infected subjects at various stages of illness but without opportunistic cerebral disease were evaluated using a comprehensive, cognitively-based neuropsychological protocol and measures of levels of depression and anxiety. The data indicated a prominent attentional disorder among impaired subjects; however, language, visual-spatial and memory functioning were not deficient. There was also evidence suggesting executive function deficit. Depression contributed a small additional component in differentiating the groups. These findings help to specify the nature of the cognitive disturbance associated with HIV encephalopathy and are consistent with the pathological effects of primary infection of the brain by HIV. In addition, they provide a specific basis for ameliorative treatment with psychostimulant medication.     

Quality of life and its predictors in patients with mild hypoxemia and chronic obstructive pulmonary disease

Measures of quality of life were obtained on 985 patients with mild hypoxemia and chronic obstructive pulmonary disease (COPD). A subsample of 100 patients were also given extensive neuropsychological and personality tests. Mildly hypoxemic COPD patients showed impairment in quality-of-life activities. They showed less impairment in physical function, compared with previous studies on COPD patients with hypoxemia, but about equal impairment in psychosocial function and dysphoric mood. Nonrelated health changes in life do not seem to account for these findings. Degree of self-reported tension-anxiety was the single greatest predictor of both physical and psychosocial measures of quality of life. Level of exercise completed, forced expiratory volume in 1 s, and neuropsychological status were significantly related to physical limitations, but not psychosocial functioning. The Pao2 was not significantly related to quality-of-life measures in this patient group.     

Arthritis and the family

Objectives. This paper reviews the literature on arthritis and the family in two areas, juvenile rheumatic diseases and adult-onset arthritis. Methods. All published papers related to arthritis and the family were identified through a Medline search and through hand searching of the major rheumatology journals. Results. The literature on the family and juvenile arthritis is somewhat inconsistent, in that some studies demonstrate significant psychosocial impact among children and families, while others find no differences in children who have arthritis compared to normative data or to siblings. Lack of consistency in the literature is largely related to methodologic problems, as most studies are retrospective reports, consisting of relatively small, nonrepresentative samples of children with rheumatic diseases. The influence of adult-onset rheumatoid arthritis and osteoarthritis on family role functioning and the performance of household responsibilities is well documented, and a body of literature on the importance of family functioning to well-being is accumulating. Conclusions. Future studies should expand sample sizes in order to investigate family impact on juvenile rheumatoid arthritis more thoroughly. More studies on the factors that contribute to improved family functioning and subsequent improvements in well-being, especially in conditions other than rheumatoid arthritis and osteoarthritis, are needed. Intervention studies to reduce perceived pain and functional disability in arthritis by incorporating a family-systems perspective are particularly lacking.