Cognitive and behavioral outcome after solid organ transplantation in childhood

Organ transplantation (Tx) is a life-saving procedure for patients with end-stage organ failure. Survival rates have improved in recent decades, but the prevalence of neurological and psychiatric morbidities remain high. This is the first study to comprehensively assess cognitive and behavioral outcomes in a national sample of Finnish children who have undergone heart, kidney, or liver Tx. It presents data on 87 children who received transplants between 1993 and 2008. The first aim of this thesis was to assess both global intelligence and a specific neuropsychological profile of pediatric heart, kidney, and liver Tx recipients. The second aim was to compare health-related quality of life and psychosocial adjustment between the Tx groups. Within the cognitive outcome variables, a generalized effect on intelligence was observed, on a group level, in children who underwent heart or kidney Tx, particularly in children with neurological abnormality. Liver Tx children had age-appropriate intelligence. All Tx groups tended to have more problems in nonverbal than in verbal intelligence. In neuropsychological functions, specific visuomotor and visuoconstructive impairment emerged in all Tx groups. In children without neurological comorbidity, few problems emerged in attention, language, or memory and learning. Of the risk factors, early onset and longer disease duration prior to Tx were associated with poorer cognitive outcome, particularly in nonverbal functions. Also, poorer graft function at the time of assessment was associated with lower verbal functions, attention, and memory in kidney Tx children. Within the behavioral outcome variables, no significant differences were observed between heart, kidney, and liver Tx recipients. Parents and teachers reported an increase in internalizing and in the total number of psychiatric symptoms, but these were attributable mainly to a significant increase in somatic complaints. The Tx children themselves found that their health made it more difficult to be with friends, for example, and attend school or hobbies. Of the risk factors, shorter follow-up time after Tx was associated with poorer behavioral outcome. Neurological comorbidity was associated with both self- and proxy-reported behavioral outcome, yet family structure (child not living with both biological parents) and poorer parental health-related quality of life were also negatively associated with the child s adjustment. The outcomes of the majority of school-aged children who have undergone an organ Tx are reassuring. However, a significant minority exhibit considerable global cognitive delay. Additionally, the cognitive profile suggests that Tx children may be susceptible to negative effects in the posterior cortex with associated visuospatial difficulties. Thus, follow-up evaluations of children who have undergone Tx need to include assessment of both intelligence and of other neuropsychological functions, particularly in the domains of visuomotor, visuoconstructive, and visuospatial functions. Further, Tx children and their families should be offered psychosocial support. During cognitive and socioemotional development, new issues may arise; consequently, counseling as a routine part of treatment throughout childhood and adolescence is essential.Bra funktionsnivå hos finländska barn som genomgått organtransplantation Organtransplantation är en livräddande behandling för patienter med organsvikt. Under de senaste årtionden har chanserna för överlevnad kontinuerligt förbättrats. Trots detta förblir förekomsten av neurologisk och psykiatrisk komorbiditet hög. Detta är den första omfattande utredningen av kognitiva och behaviorala variabler i ett nationellt urval av finska barn som genomgått en hjärt-, njur- eller levertransplantation. Majoriteten av barn i skolåldern som genomgått en organtransplantation har en bra funktionsnivå. En betydande minoritet uppvisar ändå omfattande problem i den kognitiva utvecklingen. Detta gäller speciellt barn med neurologisk avvikelse. Dessutom tyder den kognitiva profilen på en benägenhet för negativa effekter i hjärnbarkens posteriora delar, vilket är förknippat med visuospatiala svårigheter. I uppföljningen är det därför nödvändigt att utvärdera både allmän intelligens såväl som specifika neuropsykologiska funktioner, med särskild tonvikt på de visuomotoriska, visuokonstruktiva och visuospatiala funktionerna. Tidig sjukdomsdebut och en längre sjukdomstid före transplantationen var associerade med sämre kognitiva resultat, speciellt i nonverbala funktioner. Det visade sig också att en sämre organfunktion vid tidpunkten för studien var associerad med sämre verbal funktion, uppmärksamhet och minne hos njurtransplanterade barn. Mellan transplantationsgrupperna observerades inga skillnader i hälsorelaterad livskvalitet eller psykosocial anpassning. Patienterna upplevde att deras hälsotillstånd försvårade bl.a. förmågan att umgås med vänner och att delta i skolgång eller hobbyn. Kortare uppföljningstid efter transplantationen var associerad med mera beteendemässiga problem. Neurologisk komorbiditet påverkade både barnens egen utvärdering av sin livskvalitet samt föräldrarnas och lärarnas rapportering av psykosociala anpassningssvårigheter. Även familjestruktur (barnet bodde inte med sina båda biologiska föräldrar) och sämre hälsorelaterad livskvalitet hos föräldrarna var associerade med sämre anpassning hos barnet. Familjer med barn som genomgått en organtransplantation borde därför erbjudas psykosocialt stöd. Detta stöd borde erbjudas som en väsentlig del av vården under hela uppväxten eftersom nya frågor kan uppstå under barnets kognitiva och socioemotionella utveckling.Elinsiirron saaneilla suomalaislapsilla hyvä toimintataso Moderni lääketiede pystyy elinsiirtoleikkausten avulla pelastamaan kasvavan määrän lapsia, joiden elämä on ollut uhattuna. Eloonjäämisluvut ovat parantuneet viime vuosikymmenten aikana, mutta neurologisten ja psykiatristen ongelmien esiintyvyys on pysynyt korkeana. Tämä on ensimmäinen kattava tutkimus kognitiivisista ja behavioraalisista muuttujista kansallisessa otoksessa sydän-, munuais- tai maksansiirron saaneista suomalaislapsista. Enemmistöllä kouluikäisistä elinsiirtolapsista toimintataso oli hyvä. Merkittävällä vähemmistöllä oli kuitenkin huomattavan laaja-alaisia kognitiivisen kehityksen ongelmia. Tämä koski erityisesti lapsia, joilla oli todettu neurologisia poikkeavuuksia. Tämän lisäksi siirron saaneiden lasten kognitiivinen profiili viittasi vaurioihin aivokuoren taemmissa osissa ja näihin liittyviin visuospatiaalisiin ongelmiin. Siirtolasten seurannassa tulisi näin ollen yleisen älykkyyden lisäksi tutkia muita neuropsykologisia toimintoja huomioiden erityisesti visuomotoriset, visuokonstruktiiviset ja avaruudellisen hahmottamisen ongelmat. Riskitekijöistä varhainen sairastuminen ja pidempi sairausaika ennen siirtoa olivat yhteydessä huonompiin kognitiivisiin tuloksiin, erityisesti ei-kielellisissä toiminnoissa. Lisäksi heikompi siirteen toiminta tutkimuksen ajankohtana oli yhteydessä huonompiin kielellisiin toimintoihin, tarkkaavuuteen ja muistiin munuaissiirron saaneilla lapsilla. Behavioraalisissa muuttujissa terveyteen liittyvä elämänlaatu ja psykososiaalinen sopeutuminen eivät eronneet siirtoryhmien välillä. Potilaat raportoivat terveytensä vaikuttavan kielteisesti mm. ystävien kanssa vietettyyn aikaan ja koulunkäyntiin tai harrastuksiin. Riskitekijöistä pidempi seuranta-aika siirrosta oli tärkeä lieventävä tekijä. Neurologinen komorbiditeetti oli yhteydessä sekä lasten omaan arvioon elämänlaadustaan että vanhempien ja opettajien arvioon lasten sopeutumisvaikeuksista. Myös perherakenne (lapsi ei asunut kummankin biologisen vanhempansa kanssa) ja vanhempien oma heikentynyt terveyteen liittyvä elämänlaatu olivat yhteydessä lasten huonompaan sopeutumiseen. Siirtolapsille ja heidän perheilleen tulisi näin ollen tarjota psykososiaalista tukea. Tavanomaisen kognitiivisen ja sosioemotionaalisen kehityksen myötä saattaa ilmetä uudenlaisia kysymyksiä ja psyykkisen tuen tulisikin olla olennainen osa lasten saamaa hoitoa läpi lapsuuden ja nuoruuden

Male Sexual Function after Allogeneic Hematopoietic Stem Cell Transplantation in Childhood: A Multicenter Study

There are many known endocrine complications after allogeneic hematopoietic stem cell transplantation (HSCT) in childhood including increased risk of biochemical hypogonadism. However, little is known about sexuality in adulthood following childhood HSCT. In this multicenter study, sexual functions and possible risk factors were assessed comprehensively in two national cohorts (Finland and Denmark) of male adult survivors of childhood HSCT. Compared to a healthy control group (n = 56), HSCT survivors (n = 97) reported less sexual fantasies, poorer orgasms, lower sexual activity with a partner and reduced satisfaction with their sex life, even in the presence of normal erectile functions and a similar frequency of autoerotic acts. Of the HSCT survivors, 35% were cohabitating/married and 66% were sexually active. Risk factors for poorer self-reported sexual functions were partner status (not cohabitating with a partner), depressive symptoms, CNS and testicular irradiation. Sexual dysfunction increased by age in the HSCT group with a pace comparable to that of the control group. However, because of the lower baseline level of sexual functions in the HSCT group, they will reach the level of clinically significant dysfunction at a younger age. Hence, male survivors of childhood HSCT should be interviewed in detail about their sexual health beyond erectile functions

Male Sexual Function after Allogeneic Hematopoietic Stem Cell Transplantation in Childhood: A Multicenter Study

There are many known endocrine complications after allogeneic hematopoietic stem cell transplantation (HSCT) in childhood including increased risk of biochemical hypogonadism. However, little is known about sexuality in adulthood following childhood HSCT. In this multicenter study, sexual functions and possible risk factors were assessed comprehensively in two national cohorts (Finland and Denmark) of male adult survivors of childhood HSCT. Compared to a healthy control group (n = 56), HSCT survivors (n = 97) reported less sexual fantasies, poorer orgasms, lower sexual activity with a partner and reduced satisfaction with their sex life, even in the presence of normal erectile functions and a similar frequency of autoerotic acts. Of the HSCT survivors, 35% were cohabitating/married and 66% were sexually active. Risk factors for poorer self-reported sexual functions were partner status (not cohabitating with a partner), depressive symptoms, CNS and testicular irradiation. Sexual dysfunction increased by age in the HSCT group with a pace comparable to that of the control group. However, because of the lower baseline level of sexual functions in the HSCT group, they will reach the level of clinically significant dysfunction at a younger age. Hence, male survivors of childhood HSCT should be interviewed in detail about their sexual health beyond erectile functions

Family members' participation in palliative inpatient care: An integrative review

Aim: To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported.Methods: This review followed a methodology outlined in the literature for integrative reviews. A literature search supplemented by a manual search was conducted on four electronic databases during 2020 to 2021: PubMed, CINAHL, PsycINFO, and Cochrane Library. A critical appraisal of the included studies was performed, and data were analysed using inductive content analysis.Results: The literature search resulted in 4990 articles, of which 14 articles were included in this review. Four main categories were identified concerning the participation of family members in hospital inpatient palliative care: participation in the physical care, provision of emotional support, promoting good patient care, and support provided by healthcare professionals for family members' participation. Family members' participation can be supported in different ways, including active communication and adequate information.Conclusion: Family members' participation in hospital inpatient palliative care has been an important part of palliative care in hospital settings. Family members should be offered the opportunity to participate in patient care, and their presence in the hospital should be accommodated. Research on the topic is still scarce, and future research is needed from different perspectives, including intervention research.</p

Postnatal N‑acetylcysteine does not provide neuroprotection in extremely low birth weight infants : A follow-up of a randomized controlled trial

Corrigendum, DOI: 10.1016/j.earlhumdev.2019.05.004.Peer reviewe

Physical Fitness and Frailty in Males after Allogeneic Hematopoietic Stem Cell Transplantation in Childhood: A Long-Term Follow-Up Study

Purpose and methods: To analyze physical fitness, physical activity and the prevalence of frailty in male long-term survivors of pediatric allogeneic hematopoietic stem cell transplantation (HSCT). We performed a Nordic two-center study of 98 male survivors (mean age 28.7 years, range 18.5–47.0) treated with pediatric allogeneic hematopoietic stem cell transplantation (HSCT) 1980–2010 in denmark or finland. physical fitness was evaluated by the dominant hand grip-strength, timed up-and-go, sit-to-stand, gait speed and two-minute walk tests. Results: Survivors presented significantly lower muscle strength and muscle endurance in the dominant hand-grip strength (median Z-score −0.7, range −4.3–3.9) and sit-to-stand tests (median Z-score −1.5, range −3.5–2.5) compared to age and sex matched normative values of the tests. However, mobility and gait speed were not affected on a group level. The prevalence of frailty (pre-frail 20% or frail 10%) was high among the survivors. In multiple regression analysis, chronic graft-versus-host disease, shorter stature, higher body fat mass and hazardous drinking predicted prefrail/frail status. Common cardiovascular risk factors, such as increased levels of serum triglycerides, higher resting heart rate and diastolic blood pressure, were associated with lower physical fitness. Conclusion: Low muscle strength and a high incidence of frailty were observed in survivors of pediatric HSCT. There is a predominant risk of cardiovascular and metabolic diseases in the long-term

Physical Fitness and Frailty in Males after Allogeneic Hematopoietic Stem Cell Transplantation in Childhood : A Long-Term Follow-Up Study

Simple Summary The prevalence of frailty is increased among young adult childhood cancer survivors and is associated with early morbidity and mortality. The aim of our study was to analyze physical fitness, physical activity and the prevalence of frailty in male long-term survivors of pediatric allogeneic hematopoietic stem cell transplantation. We observed significantly lower muscle strength and muscle endurance in the hand-grip and sit-to-stand tests compared to the age and sex matched normative reference values of the tests. Furthermore, 30% of the survivors were considered pre-frail or frail. Chronic graft-versus-host disease, shorter stature, higher body fat mass and hazardous drinking predicted prefrail/frail status. Common cardiovascular risk factors were associated with poor physical fitness and low physical activity level. These results indicate a need for cardiometabolic follow up as well as health education in the decades following HSCT. Purpose and methods: To analyze physical fitness, physical activity and the prevalence of frailty in male long-term survivors of pediatric allogeneic hematopoietic stem cell transplantation (HSCT). We performed a Nordic two-center study of 98 male survivors (mean age 28.7 years, range 18.5-47.0) treated with pediatric allogeneic hematopoietic stem cell transplantation (HSCT) 1980-2010 in denmark or finland. physical fitness was evaluated by the dominant hand grip-strength, timed up-and-go, sit-to-stand, gait speed and two-minute walk tests. Results: Survivors presented significantly lower muscle strength and muscle endurance in the dominant hand-grip strength (median Z-score -0.7, range -4.3-3.9) and sit-to-stand tests (median Z-score -1.5, range -3.5-2.5) compared to age and sex matched normative values of the tests. However, mobility and gait speed were not affected on a group level. The prevalence of frailty (pre-frail 20% or frail 10%) was high among the survivors. In multiple regression analysis, chronic graft-versus-host disease, shorter stature, higher body fat mass and hazardous drinking predicted prefrail/frail status. Common cardiovascular risk factors, such as increased levels of serum triglycerides, higher resting heart rate and diastolic blood pressure, were associated with lower physical fitness. Conclusion: Low muscle strength and a high incidence of frailty were observed in survivors of pediatric HSCT. There is a predominant risk of cardiovascular and metabolic diseases in the long-term.Peer reviewe

Physical Fitness and Frailty in Males after Allogeneic Hematopoietic Stem Cell Transplantation in Childhood: A Long-Term Follow-Up Study

Purpose and methods: To analyze physical fitness, physical activity and the prevalence of frailty in male long-term survivors of pediatric allogeneic hematopoietic stem cell transplantation (HSCT). We performed a Nordic two-center study of 98 male survivors (mean age 28.7 years, range 18.5–47.0) treated with pediatric allogeneic hematopoietic stem cell transplantation (HSCT) 1980–2010 in denmark or finland. physical fitness was evaluated by the dominant hand grip-strength, timed up-and-go, sit-to-stand, gait speed and two-minute walk tests. Results: Survivors presented significantly lower muscle strength and muscle endurance in the dominant hand-grip strength (median Z-score −0.7, range −4.3–3.9) and sit-to-stand tests (median Z-score −1.5, range −3.5–2.5) compared to age and sex matched normative values of the tests. However, mobility and gait speed were not affected on a group level. The prevalence of frailty (pre-frail 20% or frail 10%) was high among the survivors. In multiple regression analysis, chronic graft-versus-host disease, shorter stature, higher body fat mass and hazardous drinking predicted prefrail/frail status. Common cardiovascular risk factors, such as increased levels of serum triglycerides, higher resting heart rate and diastolic blood pressure, were associated with lower physical fitness. Conclusion: Low muscle strength and a high incidence of frailty were observed in survivors of pediatric HSCT. There is a predominant risk of cardiovascular and metabolic diseases in the long-term

Latent class growth analysis identified different trajectories in cognitive development of extremely low birthweight children

Background Recent longitudinal studies suggest stable cognitive development in preterm children, although with great individual variation. This prospective neurocognitive follow-up study of extremely low birthweight (ELBW, 115) showed stable development (-3.2 points, p=0.250). Multiple linear regression showed that neonatal complications (intraventricular haemorrhage grade 3-4 and blood culture positive sepsis) and maternal education significantly predicted lower intelligence at the second assessment (F(3,106)=7.27, pPeer reviewe

Supportive interventions for family members of very seriously ill patients in inpatient care: A systematic review

Aims and objectives To systematically review existing literature exploring supportive interventions for family members of very seriously ill patients in inpatient care.Background Being around a patient with a very serious illness in inpatient care setting is stressful and burdensome for family members. There is little information available on interventions that support family members of very seriously ill patients in inpatient care.Design A systematic review.Methods The literature review was conducted in May 2020 using four databases: PubMed (Medline), CINAHL, PsycINFO and Cochrane. A quality assessment was performed using the Quality Assessment Tool for Before-After (Pre-Post) Studies With No Control Group by the National Heart, Lung, and Blood Institute. The PRISMA checklist was used to support specific reporting and the TIDieR checklist to form detailed descriptions of the interventions.Results Of the 7165 identified studies, 11 studies were included in the review based on predetermined criteria. Interventions were based on meetings with family members, education or therapy. Mindfulness- and therapy-based interventions and multiple-session tailored interventions showed beneficial outcomes for psychological symptoms and educational interventions on preparedness and self-efficacy. Several different measuring instruments to evaluate similar outcomes, such as psychological symptoms and coping, were used.Conclusions Only a few supportive interventions for family members of very seriously ill patients in inpatient care were found, which made comparing the differences in the varying study methods and outcomes difficult. More studies on supportive interventions and their feasibility and effectiveness are essential. Further evaluation of instruments is necessary to identify the most valid and reliable ways of measuring symptoms and coping.Relevance to Clinical Practice The results of this study can be used in clinical practice when selecting effective interventions or assessing family members' need for support. Additionally, the results can be used for guidance when developing new, effective interventions.</div