Quality of life of adults born very preterm or very low birth weight : a systematic review

Aim To establish differences in health‐related quality of life (HRQoL) in adults born term and those born very preterm (VPT) and/or with a very low birth weight (VLBW). Methods Our systematic review is preregistered under PROSPERO‐ID CRD42018084005. Studies were eligible for inclusion if their authors had stated the HRQoL of adults (18 years or older) born VPT (<32 weeks of gestation) or VLBW (<1500 g of birth weight) had been measured, if written in English, and if they reported a comparison with a control group or valid norms. We searched Pubmed, Scopus, Psycinfo, Web of Science, Embase and contacted experts in this field. Non‐response and other bias‐related problems were evaluated. Results We included 18 studies of 15 unique cohorts from 11 countries. In 11 studies, no differences in HRQoL between VPT or VLBW and term‐born adults were found; four studies found lower HRQoL in VPT/VLB adults; and evidence from three studies was inconclusive. Disability, sex and age were associated with HRQoL. Conclusion There is no conclusive evidence that HRQoL differs between term‐born adults and those born VPT or with a VLBW. The comparability of studies was restricted by differences between HRQoL measurements, age ranges at assessment and definition of disability

Health-related quality of life in children and emotional reactions of parents following completion of cancer treatment

Contains fulltext : 50105.pdf (publisher's version ) (Closed access)BACKGROUND: Completing therapy is one of the major transitions in care in the practice of pediatric oncology and, therefore, deserves special consideration. The purpose of the study was to investigate health-related quality of life (HRQOL) of pediatric patients, and emotional reactions of their parents, shortly after the end of successful treatment. METHODS: HRQOL of 126 patients, aged 1-15 years, on average 2 months after the end of successful treatment, was assessed with the TNO-AZL Pre-school Quality of life Questionnaire and the TNO-AZL Children's Quality of life Questionnaire. Emotional adjustment of 124 mothers and 111 fathers was assessed with the General Health Questionnaire and the Situation Specific Emotional Reaction Questionnaire. The outcomes of the patients and parents were compared with norm data by means of one sample t-tests, one sample sign-tests or binomial tests. RESULTS: All age groups, except patients aged 8-11 years, experienced worse HRQOL than the norm with respect to motor functioning. In addition, pre-school patients were rated worse on sleeping, appetite, stomach, skin, problem behavior, anxiety, and liveliness, and patients aged 6-7 years on autonomy and cognitive functioning. Parents reported more psychological distress than the norm. Compared to parents whose children were 1-5 years after cancer treatment, they suffered more from feelings of loneliness, helplessness, and uncertainty. CONCLUSIONS: A few months after the end of successful cancer treatment, both patients and parents appeared to experience worse well-being than the norm to a clinically relevant extent. Supporting patients and parents should not stop when treatment ends

The Bt-DUX: Development of a subjective measure of health-related quality of life in patients who underwent surgery for lower extremity malignant bone tumor

Background. To examine the practical applicability, internal consistency, and validity of the Bt-DUX, a disease-specific Health Related Quality of Life (HRQoL) instrument. The Bt-Dux was developed to examine patients' individual values of their life after a malignant bone tumor of the lower extremity at four domains (cosmetic, social, emotional, and functional). Procedure. Patients were eligible for this cross-sectional, multicenter study if they underwent surgery for a malignant tumor of the leg in a period ranging between 12 and 60 months before the recruitment. Assessments included: Bt-DUX, Toronto Extremity Salvage Score (TESS) Short Form (SF)-36, TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL), and TNO-AZL Children's Quality of Life Questionnaire (TACQOL). Results. Seventy-two patients (35 male, 37 female), mean age 17 (SD 4) years were included. Limb sparing surgery took place in 32 patients and ablative surgery in 40 patients. The Bt-DUX was completed in less than 5 min and easy to comprehend. The mean Bt-DUX score was 69.8 (SD 15.5), with Cronbach's alpha being 0.92. Domain-total correlations ranged between 0.84 and 0.88 (P<0.01). Correlations between Bt-DUX Total score and TESS, SF-36 Physical and Mental Component Summary scales a

Long term follow-up of health-related quality of life in young adults born very preterm or with a very low birth weight

Background\ud \ud The purpose was, first, to evaluate changes in health-related quality of life (HRQL) in a cohort of very low birth weight (VLBW; <1500 g.) or very preterm (< 32 weeks of gestation) children between ages 14 and 19, and second, to identify correlates of HRQL at age 19. \ud \ud Methods\ud \ud HRQL was assessed using the Health Utilities Index Mark 3 (HUI3). In order to explore correlates of HRQL, we performed a hierarchical regression analysis. \ud \ud Results\ud \ud Surviving VLBW children (n = 959) from a 1983 Dutch nation-wide cohort were eligible; 630 participated both at age 14 and 19; 54 at age 19 only. The mean HRQL score decreased from 0.87 to 0.86. The HRQL of 45% was stable, 25% were better and 30% were worse. A regression model showed internalizing problems were related most strongly to HRQL. \ud \ud Conclusions\ud \ud In the transition from adolescence to young adulthood, HRQL in Dutch VLBW children was stable at the group level but varied at the individual level. HRQL was negatively associated with internalizing problems and also with physical handicaps. Long-term follow-up studies on the impact of VLBW on HRQL are all the more called for, given the growing number of vulnerable infants surviving the neonatal period.\u

School-aged children after the end of successful treatment of non-central nervous system cancer: Longitudinal assessment of health-related quality of life, anxiety and coping

Contains fulltext : 81585.pdf (publisher's version ) (Closed access)The aim of the study was to investigate: (1) health-related quality of life (HRQoL) and anxiety in school-aged cancer survivors during the first 4 years of continuous remission after the end of treatment; and (2) correlations of disease-related coping with HRQoL and anxiety. A total of 76 survivors aged 8-15 years completed questionnaires about HRQoL, anxiety and disease-related cognitive coping at one to five measurement occasions. Their HRQoL was compared with norm data, 2 months (n = 49) and 1 year (n = 41), 2 years (n = 41), 3 years (n = 42) and 4 years (n = 27) after treatment. Through longitudinal mixed models analyses it was investigated to what extent disease-related cognitive coping was associated with HRQoL and anxiety over time, independent of the impact of demographic and medical variables. Survivors reported worse Motor Functioning (HRQoL) 2 months after the end of treatment, but from 1 year after treatment they did no longer differ from the norm population. Lower levels of anxiety were associated with male gender, being more optimistic about the further course of the disease (predictive control) and less searching for information about the disease (interpretative control). Stronger reliance on the physician (vicarious control) was associated with better mental HRQoL. As a group, survivors regained good HRQoL from 1 year after treatment. Monitoring and screening survivors are necessary to be able to trace the survivors at risk of worse HRQoL

A gp41 MPER-specific llama VHH requires a hydrophobic CDR3 for neutralization but not for antigen recognition

The membrane proximal external region (MPER) of the HIV-1 glycoprotein gp41 is targeted by the broadly neutralizing antibodies 2F5 and 4E10. To date, no immunization regimen in animals or humans has produced HIV-1 neutralizing MPER-specific antibodies. We immunized llamas with gp41-MPER proteoliposomes and selected a MPER-specific single chain antibody (VHH), 2H10, whose epitope overlaps with that of mAb 2F5. Bi-2H10, a bivalent form of 2H10, which displayed an approximately 20-fold increased affinity compared to the monovalent 2H10, neutralized various sensitive and resistant HIV-1 strains, as well as SHIV strains in TZM-bl cells. X-ray and NMR analyses combined with mutagenesis and modeling revealed that 2H10 recognizes its gp41 epitope in a helical conformation. Notably, tryptophan 100 at the tip of the long CDR3 is not required for gp41 interaction but essential for neutralization. Thus bi-2H10 is an anti-MPER antibody generated by immunization that requires hydrophobic CDR3 determinants in addition to epitope recognition for neutralization similar to the mode of neutralization employed by mAbs 2F5 and 4E10

Transilluminations: Making the Transcendent Transparent

Chapter 21 of the Book of Revelations contains a detailed description of the New Jerusalem as a city full of divine light and erected on a foundation of brilliant minerals. In the gothic cathedrals built in the Middle Ages this radiant and transcendent place was often represented in their stained glass windows and so made partly visible by the incoming and always changing light. In this contribution light will be shed on the use of stained glass as a translucent medium to make the transcendent transparent. Next to the imagery of the New Jerusalem, attention will be paid to chandeliers representing this holy city as well as to windows with the sacred heart and the remarkable stained glasswork the Belgian artist Wim Delvoye, by many considered to be blasphemous