Childhood To Adulthood Research Articles

Panorama of the distal myopathies.

Distal myopathies are genetic primary muscle disorders with a prominent weakness at onset in hands and/or feet. The age of onset (from early childhood to adulthood), the distribution of muscle weakness (upper versus lower limbs) and the histological findings (ranging from nonspecific myopathic changes to myofibrillar disarrays and rimmed vacuoles) are extremely variable. However, despite being characterized by a wide clinical and genetic heterogeneity, the distal myopathies are a category of muscular dystrophies: genetic diseases with progressive loss of muscle fibers. Myopathic congenital arthrogryposis is also a form of distal myopathy usually caused by focal amyoplasia.Massive parallel sequencing has further expanded the long list of genes associated with a distal myopathy, and contributed identifying as distal myopathy-causative rare variants in genes more often related with other skeletal or cardiac muscle diseases.Currently, almost 20 genes (ACTN2, CAV3, CRYAB, DNAJB6, DNM2, FLNC, HNRNPA1, HSPB8, KHLH9, LDB3, MATR3, MB, MYOT, PLIN4, TIA1, VCP, NOTCH2NLC, LRP12, GIPS1) have been associated with an autosomal dominant form of distal myopathy. Pathogenic changes in four genes (ADSSL, ANO5, DYSF, GNE) cause an autosomal recessive form; and disease-causing variants in five genes (DES, MYH7, NEB, RYR1 and TTN) result either in a dominant or in a recessive distal myopathy. Finally, a digenic mechanism, underlying a Welander-like form of distal myopathy, has been recently elucidated. Rare pathogenic mutations in SQSTM1, previously identified with a bone disease (Paget disease), unexpectedly cause a distal myopathy when combined with a common polymorphism in TIA1.The present review aims at describing the genetic basis of distal myopathy and at summarizing the clinical features of the different forms described so far.

Evaluation of the v2.0 Brief Profiles for Sexual Function and Satisfaction PROMIS in Adolescent and Young Adult Childhood Cancer Survivors.

Purpose: Sexual dysfunction (SD) is a common, but often unrecognized potential late effect among childhood cancer survivors (CCS). Unfortunately, both patients and providers report low levels of routine screening and identify multiple barriers, including lack of knowledge, discomfort, and limited time. This is particularly true among CCS who are adolescent or young adult aged (AYA-CCS). One potential way to increase screening, detection, and treatment for SD among AYA-CCS is to employ patient-reported outcomes measures. While adult screening tools exist, no SD screening tool has been evaluated specifically among this younger population. Methods: This qualitative study used Think-Aloud and cognitive interviewing methods to obtain feedback from AYA-CCS on acceptability, usefulness, and validity of the Patient-Reported Outcomes Measurement Information System® (PROMIS®) v2.0 Brief Profiles for Sexual Function and Satisfaction (SexFS Brief) in CCS now 15-24 years of age. Results: The SexFS Brief demonstrated acceptability, response process and content validity, and usefulness among AYA-CCS. There were no detectable differences by age or gender. This study did not reveal any necessary modification to the SexFS Brief for this population. Conclusion: The PROMIS SexFS Brief is an acceptable and useful tool, with demonstrated response process and content validity, and may facilitate improved screening and diagnosis of SD among AYA-CCS. Furthermore, this tool was viewed favorably by AYA-CCS as a way to reduce barriers such as discomfort and lack of knowledge on the part of patients. Further evaluation of its effectiveness and acceptability in a clinical setting is warranted.

Testicular Function of childhood cancer survivors: Who is worse?

This cross-sectional study evaluated morpho-volumetric development of the testis, endocrine function and sperm parameters in 102 young adult childhood cancer survivors (CCS). About 1/3 of patients showed low testicular volume (<24 ml); the Hodgkin disease group showed significantly lower total testicular volumes, compared to the rest of the group. CCS who underwent hematopoietic stem cell transplantation (SCT) showed significantly lower total testicular volume, followed by those who received chemotherapy plus radiotherapy. Eighty-seven CCS underwent hormonal evaluation; 3/87 showed low LH levels, 5/87 high LH levels, 8/87 high FSH values. Twenty-eight out of 84 patients (33.3%) had suboptimal testosterone values (<3.5 ng/ml), while 5/84 showed frankly reduced levels (<2.3 ng/ml). AMH levels were measured in 17 CCS and were normal in all of them. Thirty-four patients accepted to undergo sperm analysis; sperm count was reduced in 7/34 patients (20.6%), while azoospermia was found in 6/34 patients (17.7%). All patients with azoospermia had a primary testicular failure (FSH levels >8 UI/l and low testicular volume) and had received radiotherapy or SCT. History of Hodgkin’s disease, SCT, and non-cranial irradiation associated with chemotherapy were risk factors for reduced sperm concentration. Patients treated during puberty showed lower total testicular volume than patients treated before puberty, probably due to a more aggressive treatment in older patients. Sperm concentration was more closely related to testicular volume than to FSH levels, while AMH values were unrelated to testicular function. In this study, only one third of patients accepted to undergo sperm analysis. The same reluctance has been described by other authors. This common attitude among CCS has prompted the search for surrogate markers of spermatogenesis to be used in infertility screening. Inhibin B has proved to be a better marker for spermatogenesis than FSH. Surprisingly, inhibin B was not analysed in this study, while as expected, AMH was not useful in the evaluation of testicular function. Similarly, the cumulative dose of alkylating agents, already identified as a detrimental factor affecting gonadal function in these patients, was not evaluated.

HUBUNGAN PENGASUHAN ANAK DALAM KELUARGA YANG MENIKAH MUDA DENGAN PERKEMBANGAN KARAKTER TANGGUNG JAWAB PADA ANAK USIA 5-6 TAHUN DI KORONG SUNGAI PINANG, NAGARI KASANG, KECAMATAN BATANG ANAI.

The role of parents is very big for the development of their children. Parental care for children affects the personality of the child in adulthood. The lack of development of the character of responsibility for children aged 5-6 years in Korong Sungai Pinang, Nagari Kasang, Batang Anai District, Padang Pariaman Regency is suspected to be one of the causes because in this area many parents of children have a background of getting married at a young age. So that they are not yet mature in educating their children. This study aims to determine the relationship of child care in young married families with the development of the character of responsibility in children aged 5-6 years in Sungai Pinang, Nagari Kasang, Batang Anai District. This research belongs to a quantitative type of correlational research. Parents who are married at a young age who have children aged 5-6 years in Korong Sungai Pinang, Nagari Kasang, Batang Anai District, totaling 26 people, the sample of this study took 19 parents with the sample technique. purposive sampling. Data analysis using Spearman rho test. Based on the results of the research, the description of child care in young married families in Korong Sungai Pinang, Nagari Kasang, Batang Anai District is categorized as less accomplished , the description of the development of the character of responsibility in children aged 5-6 years is categorized as less developed and there is a relationship of childcare in families who marry young with the development of the character of responsibility in children aged 5-6 years in Sungai Pinang, Nagari Kasang, Batang Anai District. (sig 0.029 &lt;0.05).Keywords: Responsibility, Character, Development, Child Care, in Young Married Families, 5-6 Years Old Children

Parenting Patterns and Its Implications for Formation Religious Character in Early Childhood

The purpose of this study was to determine which form of parenting is the most dominant applied by parents in instilling religious characters in early childhood. Parenting is a process in the family, the interaction between parents and children. Parenting patterns have been applied since the child was born and adjusted to the age and stage of development. Learning in early childhood is the initial foundation of character building in children. Religious character education should be carried out comprehensively, covering all aspects of education, from the preparation of children from birth to efforts to strengthen children's physical and spiritual abilities, conveyed with advice, with examples well as well as with the process of getting used to good things so that it has implications for the personality of the child in adulthood. This study used an analysis descriptive qualitative method. To collect data, the researcher used three methods, namely: interview method, documentation, and observation method. The results showed that the parenting style of parents and its implications for the formation of a religious character in early childhood at TK Al-Hikmah Karangbesuki Sukun Malang is democratic and permissive parenting which is the most dominant applied.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors

BackgroundAdolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient’s perspective, key factors that facilitate successful transitions to adult-centered survivorship care.MethodsA qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis.ResultsFour major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being.ConclusionsFrom the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS’ report as important in transitioning care from pediatric- to adult-centered care.

Fertility-Related Concerns and Uncertainties in Adolescent and Young Adult Childhood Cancer Survivors.

Purpose: This study aimed to uncover the fertility-related concerns and uncertainties in adolescent and young adult (AYA) childhood cancer survivors. Methods: In this qualitative study, participants were recruited from an oncohematology outpatient clinic at a university hospital in Brazil. Twenty-four AYA cancer survivors, aged 18- 24 years (13 men and 11 women), participated in individual semistructured interviews focusing on two parts-sociodemographic and clinical variables and guiding questions that enabled understanding of the concerns and uncertainties regarding the risks of infertility and their impact on relationships and the need for guidance. Data were analyzed using inductive thematic analysis. Results: Four themes were identified from the data-(1) knowledge about fertility, (2) emotional impact and fertility-related uncertainty, (3) sharing the possible risk of infertility with partners, and (4) need for information on possible loss of fertility. Conclusion: The meanings attributed to the loss of fertility after cancer treatment uncovered the need for health professionals to organize survivor services in line with the survivors' needs, and include reproductive concerns and uncertainties in this planning. The study results provide insights for the development of health care services that meet the real needs of this particular population that has long-term follow-up demands.

Relationships between parent and adolescent/young adult mental health among Hispanic and non-Hispanic childhood cancer survivors

Purpose To examine associations between parents and adolescent and young adult (AYA) childhood cancer survivors’ (CCS) mental health, and differences by Hispanic ethnicity. Sample Participants were 129 CCS (Mage = 19.5 yrs.; 49.9% female) and their parents (Mage = 49.0 yrs.; 87.6% female); 52.7% identified as Hispanic. Methods CCS completed assessments of Depressive Symptoms (CES-D), Posttraumatic Growth (PTG) and Pediatric Quality of Life (PedsQL), while parents completed CES-D, Perceived Stress (PSS) and Posttraumatic Stress Disorder (PTSD) measures. Results After controlling for covariates, all three negative parental mental health measures (Parent CES-D, PSS, and PTSD), were positively associated with CCS CES-D indicating that higher depressive symptoms and stress in parents was associated with higher depressive symptoms in CCS. Parent CES-D was negatively associated with CCS PedsQL and parent PSS was negatively associated with CCS PTG. Moderation analysis revealed parent PSS to be negatively associated with PedsQL and positively related to CES-D among Hispanic families only. Conclusion Higher parental negative mental health measures may adversely affect CCS levels of depression, while lower values for parental negative health measures were associated with positive CCS mental health outcomes in AYA. Hispanic parents experience more associations with stress than non-Hispanics. Implications for psychosocial providers Long-term survivorship follow-up care guidelines should address the mental health needs of both parents and CCS, paying particular attention to perceived stress in Hispanic families.

9.I. Workshop: Healthy ageing and public health: a bound fate

Abstract The promotion of healthy ageing at all ages of life is a key point of public health strategy in almost all health systems throughout the world with a special focus on the systems of the advanced economies. The World Health Organization promotes a lifespan approach in order to put the basis of healthy ageing in the early life, supported by a growing set of data that show the relevance of life habits and socio-economic condition since the childhood for the older adults' health. However, we already witness the impact of large cohort of older adults who fuel the demand for health and social services, with worrying projection for the next 20-30 years in terms of economic stressors on the public finances coming from the request for Long Term Care as well as for Acute care services. Prevention at all age, namely at older age, is crucial to manage the demand for care. What interventions can lead this approach? What model of care could be put on the field in order to offer a mix of integrate health and social care able to meet the individual needs and to promote the best possible quality of life for each individual? what is the role of bio-psycho-social frailty as synthetic indicator of the needs of care at population level as well as of key information to stratify the risk of negative event at individual level? what professionals should be more involved in the new model of community care? what pathway in terms of training could we promote in the next years to support the shift from acute to long term care? what contribution should be asked to civil society to allow the spread of community care? Answers to these questions should fit with different geographical, political, social and economic settings as well as with different health systems. At the same time the development of a multidimensional assessment of the demand of care, both at individual and population level, is a crucial step to plan effective interventions. The main obstacles to this process seem to stem from the organization of community care still in silos with rare collaboration among different professionals. To overcome the obstacles a mindset change should be achieved mainly by training of personnel to set up a new model of care based on the systematic interaction among the prevention and care actors. Moreover, a pro-active component of prevention and care programs at community level, could strengthen many interventions that address a population which is not always aware of the risk associated to the progression of frailty. Finally, ICT devices could provide a valuable contribution to the reshuffling of community care, if they are embedded in a comprehensive model including a robust investment in human resources. The aim of the workshop is to report on the challenges that healthy ageing process has to face in different world areas and to discuss future developments likely to affect public health policies. Key messages Multidimensional approach to public health policies aimed at increasing health promotion programs impact on older adults is the key to promote healthy ageing. Pro-active services could increase the involvement of older adults’ population into healthy ageing program.

Incidence of exercise intolerance, organ system impairment, and mortality in adult childhood cancer survivors

Incidence of exercise intolerance, organ system impairment, and mortality in adult childhood cancer survivors

Cultural patterns in autobiographical memory of childhood: Comparison of Chinese, Russian, and Uzbek samples

In the present study, I examined whether the regular patterns of variables that referred to mental representation of the entire childhood in young adults might be associated with the different types of cultural selves proposed by Kagitcibasi's model of family change. In this model, three types of cultural selves (heteronomous-related self, autonomous-separated self, and autonomous-related self) are merged with culturally specific styles of parenting and childhood experience. Chinese, Russian, and Uzbekistani participants (N = 439) visualized their childhood on timelines. The exploratory factor analysis suggested a three-factor solution. Factor 1 combined memories of achievements and vicarious memories; that is, memories representing events that happened to other people. In my point of view, in contrast to "we-memories," vicarious memories portray a readiness to view other people as a valuable part of one's own life, but in the context of well-defined self-boundaries. Therefore, they denote the kind of relatedness which does not contradict autonomy. Because Factor 1 was found to be the most articulated in the Chinese sample, it was linked to the autonomous-related self, with the focus on directive function of autobiographical memory. Factor 2 was composed of the abundance of recollections, the early age of first memory, and prolonged childhood. Due to the highest scores being achieved on Factor 2 in the Russian sample, it was attributed to the autonomous-separated self, employing predominantly a self-reflective function of autobiographical memory. Factor 3 consisted of memories of attending social groups, positive emotional bias, and a tendency to mention one's own birth. Taking into account that the Uzbeks achieved the highest scores on this factor, it was interpreted as a mnemonic database of a heteronomous-related self, predominantly associated with social bonding and emotion regulation functions. Taken together, the findings highlight the assumption that childhood memories reveal a cultural self.

The association of health status and cancer history of young adult survivors of childhood cancer with parental accompaniment to survivorship clinic visits.

Adult childhood cancer survivors are frequently accompanied by a parent to survivorship clinic. From clinical evaluations among young adult survivors of childhood cancer we aimed to (1) investigate the association between accompaniment and the survivors' health complexity; and (2) determine whether accompaniment is associated with adherence to recommended surveillance tests and follow-up in clinic. This was a cross-sectional study of all patients ≥ 18years old at their first visit to the regional Yale Childhood Cancer Survivorship Clinic from 2003 to 2018. Patients underwent standardized evaluations for medical, neurocognitive, and emotional late effects of therapy; individuals accompanying patients were documented. The 168 patients were a median of 12.0 (range: 0-17.9) years at diagnosis and 22.7 (range: 18.1-39.9) years at evaluation, and 45.8% were accompanied by a parent. In multivariable analyses, 18.0-24.99years vs. 25.0-39.99years at visit (OR = 3.43, p = 0.022) and central nervous system (CNS) tumor diagnosis (OR = 6.09 vs. leukemia/lymphoma diagnosis, p = 0.010) were significantly associated with parental accompaniment. Accompaniment was not associated with number and severity of medical late effects, neurocognitive impairment, or emotional distress. Accompaniment was not associated with completed surveillance tests or a clinic follow-up within 2years. Forty-six percent of survivors were accompanied by a parent, and accompaniment was not associated with survivor health status. Accompaniment was not associated with adherence to recommended surveillance tests or clinic follow-up.

Pathways to incarceration: an examination of childhood maltreatment and personality psychopathology in incarcerated adults

ABSTRACT Early-life exposure to childhood maltreatment, whether physically-, emotionally-, and/or sexually-based has been linked consistently to psychological distress throughout the lifespan, including the development of personality disorders (PDs). Individuals with PD diagnoses are at an increased risk for criminal behavior, and borderline and antisocial PDs are particularly common in forensic settings. However, little research has assessed associations among all three variables: childhood maltreatment, personality psychopathology, and adult criminal behavior. The current study sought to address this gap in the literature by examining the associations among childhood maltreatment, maladaptive personality domains, and adult criminal behavior broadly, as well as examining the mediation pathway from childhood maltreatment to maladaptive personality to adult criminal behavior. Data collection for the current study occurred at a county jail in the Southern United States (n = 180), where participants were administered self-report measures of demographics, adult arrest history, maladaptive personality, and childhood trauma. Pearson correlation and path analyses were used to examine the data, and support was found for both broad associations of childhood maltreatment with maladaptive personality domains and adult criminal behavior, and a relationship between childhood maltreatment and adult criminal behavior, which was mediated by maladaptive personality. Implications and directions for future research are discussed.

Everybody’s Child: An Exploration of Images of Children that Shocked the World

Despite the passivity and vulnerability of childhood as a social construction, the image of the child is both powerful and transformative. Such is the power of images of the child they can and have shaped the history of nation states, shifted policy and become emblematic of a cry for change. In journalism, filmmaking, and news media the child can become the symbol of a nation, a conflict, a tragedy and the failure of policy, or indeed the adult world, to care and protect childhood itself. Using evocative images from across the 20th and 21st century, this paper interrogates how idealised notions of childhood become focal and challenged by images which reveal the death, deprivation and destruction of children. The image of 3-year-old Alan Kurdi’s body on a Turkish Beach in 2015 resonated around the world. It became the biggest trending photo on Twitter within 24 h and graced the front of hundreds of global newspapers the following day. It also demanded a political response, as presidents and prime ministers scrambled to hold press conferences and generate policy to respond to the Syrian and wider so-called Mediterranean crisis. This is just a recent example in a long line of iconic images of ‘the child’ that have shaped policy and shifted hearts and minds. The power and influence of these photographs is traced here to highlight where the discursive vulnerability of a single child becomes emblematic of the failures of the powerful: adults, governments, nation states, and global governance. Using the examples of famine stricken South Sudan (1993) and the ‘migrant crisis’ of the Mediterranean Sea (2015), how these hitherto anonymous children briefly become everybody’s child is explored here.

Facing the unknown: uncertain fertility in young adult survivors of childhood cancer.

The purpose of this research was to describe the challenges young adult childhood cancer survivors (ACCS) experience of living with an unknown fertility status. In this qualitative study, we analyzed data from in-depth interviews with 25 ACCS (15 females, 10 males) using content-driven inductive thematic analysis and constant comparative techniques. Three themes provide insight into ACCS' experiences of living with an uncertain fertility status. (1) The marked psychological burden, which included fear, worry, anxiety, and sadness, was ubiquitous. (2) Romantic relationships were negatively affected and entailed fear of disappointing one's partner, the difficulty of discussing fertility issues, and shying away from romantic relationships. (3) Communication challenges with healthcare providers were apparent across the cancer trajectory, made worse by provider knowledge gaps and dismissal of fertility concerns. (4) Well-known gender stereotypes about pregnancy and childrearing were replicated, while the emotional and life impacts that uncertain fertility could exert on males were minimized. This study provides beginning insights into the experiences of young ACCS as they navigate an unknown fertility status and highlights existing gaps in fertility-related healthcare services. Uncertain fertility has implications for survivors' wellbeing that remain poorly addressed by the existing structure of cancer survivor and fertility services. Assessing and addressing the fertility-related needs of ACCS will continue to be a vital component of patient-centered care in the future, and research to develop comprehensive support, resources, and processes of care are vital to meet this priority need.

Diagnosing Preclinical Cardiac Dysfunction in Swiss Childhood Cancer Survivors: Protocol for a Single-Center Cohort Study.

BackgroundCardiovascular disease is the leading nonmalignant cause of late deaths in childhood cancer survivors. Cardiovascular disease and cardiac dysfunction can remain asymptomatic for many years, but eventually lead to progressive disease with high morbidity and mortality. Early detection and intervention are therefore crucial to improve outcomes.ObjectiveIn our study, we aim to assess the prevalence of preclinical cardiac dysfunction in adult childhood cancer survivors using conventional and speckle tracking echocardiography; determine the association between cardiac dysfunction and treatment-related risk factors (anthracyclines, alkylating agents, steroids, cardiac radiation) and modifiable cardiovascular risk factors (abdominal obesity, hypertension); investigate the development of cardiac dysfunction longitudinally in a defined cohort; study the association between cardiac dysfunction and other health outcomes like pulmonary disease, endocrine disease, renal disease, quality of life, fatigue, strength and endurance, and physical activity; and gain experience conducting a clinical study of childhood cancer survivors that will be extended to a national, multicenter study of cardiac complications.MethodsFor this retrospective cohort study, we will invite ≥5-year childhood cancer survivors who were treated at the University Children's Hospital Bern, Switzerland with any chemotherapy or cardiac radiation since 1976 and who are ≥18 years of age at the time of the study for a cardiac assessment at the University Hospital Bern. This includes 544 childhood cancer survivors, of whom about half were treated with anthracyclines and/or cardiac radiation and half with any other chemotherapy. The standardized cardiac assessment includes a medical history focusing on signs of cardiovascular disease and its risk factors, a physical examination, anthropometry, vital parameters, the 1-minute sit-to-stand test, and echocardiography including 2-dimensional speckle tracking.ResultsWe will invite 544 eligible childhood cancer survivors (median age at the time of the study, 32.5 years; median length of time since diagnosis, 25.0 years) for a cardiac assessment. Of these survivors, 300 (55%) are at high risk, and 244 (45%) are at standard risk of cardiac dysfunction.ConclusionsThis study will determine the prevalence of preclinical cardiac dysfunction in Swiss childhood cancer survivors, inform whether speckle tracking echocardiography is more sensitive to cardiac dysfunction than conventional echocardiography, and give a detailed picture of risk factors for cardiac dysfunction. The results will help improve primary treatment and follow-up care of children with cancer.Trial RegistrationClinicalTrials.gov NCT03790943; https://clinicaltrials.gov/ct2/show/NCT03790943International Registered Report Identifier (IRRID)DERR1-10.2196/17724

Evaluating sexual function in adolescent and young adult childhood cancer survivors.

e24180 Background: Up to half of adolescent and young adult (AYA) childhood cancer survivors (CCS) experience sexual dysfunction (SD) as a result cancer or its treatment. SD in CCS is under-recognized, with low levels of routine screening due to barriers such as discomfort, time, and awareness. This study explores solutions to these barriers by describing AYA CCS preferences for implementation of screening for SD and evaluating the utility of a validated adult screening tool (PROMIS SexFS Brief) in this population. Methods: 16 AYA CCS (aged 15-24 years) completed semi-structured interviews followed by questionnaire completion. Interviews explored patients’ prior experiences with SD screening, along with preferences for screening type (e.g., discussion, screening tool), delivery modality, and timing. Patients then completed the PROMIS SexFS Brief while verbalizing their thoughts and providing open-ended responses to each item. Transcribed interviews were inductively coded and analyzed, guided by content analysis methodology. Results: This analysis represents 2/3 of planned interviews, and all will be completed by April 1, 2020. Interviews were performed with 11 females and 5 males (median age 21). Preliminary analysis demonstrates that participants had minimal experience with SD conversations, but had preferences regarding by whom, how, and when screening/education should occur. Who: Participants felt providers should have preexisting rapport with their patients; preferences existed for provider role and sex/age. How: A combination of written materials and in-person conversations was preferred. Several acknowledged a desire to have a “warning” that the conversation would happen, such as through a questionnaire. Participants did not have a preference regarding delivery modality (paper vs. online). The PROMIS SexFS Brief appeared to demonstrate content validity and acceptability in AYA CCS. When: Participants wanted education and screening to occur regularly throughout cancer therapy and survivorship. SD conversations should be tailored developmentally to the patient. Conclusions: Our results demonstrate a theme throughout interviews of the importance of patient/provider rapport. Further, while AYA CCS prefer in-person conversations about SD, conversations should be preceded by written information or a questionnaire to increase patient preparedness/comfort. Preliminary findings suggest that the PROMIS SexFS Brief is a promising tool for screening SD in this population; further studies evaluating use in clinical settings is warranted.

Frailty and neurocognitive decline in young adult survivors of childhood cancer: A longitudinal analysis from the St. Jude lifetime cohort.

10555 Background: Among young adult childhood cancer survivors, 8% meet the criteria for frailty, an aging phenotype associated with poor health. Frailty is associated with neurocognitive decline in the elderly general population, but this association has not been examined in young adult survivors of childhood cancer. Methods: Childhood cancer survivors (N = 845, mean [SD] age 30 [7] years, 22 [7] years post diagnosis, 52% male) were clinically evaluated for prefrailty/frailty (defined as ≥2/≥3 of muscle wasting, muscle weakness, low energy expenditure, slow walking speed, exhaustion) and completed neuropsychological assessments at baseline and five years later. Linear regression models estimated mean differences in neurocognitive decline in prefrail/frail survivors vs. non-frail survivors adjusting for age, sex, race, CNS therapy (cranial radiation, intrathecal chemotherapy, neurosurgery), and baseline neurocognitive performance. P-values were adjusted for multiple comparisons using false discovery rate (FDR). Results: 18% and 6% of survivors were prefrail and frail at baseline. Baseline frailty was associated with declines in visual-motor processing speed, short-term memory, and sustained attention (Table). Prefrailty and frailty were associated with declines in focused attention and executive function (Table). No significant associations were observed between prefrailty or frailty and decline in global cognition, academics, motor processing speed, long-term memory, verbal learning, or verbal fluency despite significant baseline cross-sectional associations. Conclusions: Young adult prefrail and frail survivors had greater declines in attention and executive function compared to non-frail survivors, domains commonly associated with aging. These findings suggest that interventions designed to mitigate components of frailty may also mitigate or prevent neurocognitive decline. [Table: see text]

The Loneliness and Isolation of the Parentified Child in the Family

Samotnośc i izolacja dziecka parentyfikowanego w rodzinie Parentyfikacja to zjawisko wystepujące w zyciu rodzinnym, ktore polega na odwroceniu rol miedzy dzieckiem a rodzicem/rodzicami (Boszormenyi-Nagy i Spark, 1973). W realizowanych przez autorke badaniach, osadzonych w paradygmacie interpretatywnym, parentyfikacja staje sie glownym przedmiotem zainteresowania. Na podstawie zgromadzonego materialu badawczego autorka wyroznia etapy dziecinstwa parentyfikowanego, a w ich ramach takie kategorie jak: odpowiedzialnośc, niedobrowolny heroizm, samoradzenie sobie i osamotnienie. W odniesieniu do dwoch ostatnich kategorii autorka konstruuje obraz osamotnionego dziecka doświadczającego odwrocenia rol w rodzinie. Na uwage zasluguje fakt, ze dochodzi tu do swoistego paradoksu – osamotnienia dziecka w rodzinie, środowisku mu najblizszym. Toczy ono samotną walke o przetrwanie i wlaściwe funkcjonowanie rodziny, zachowanie pozorow normalności, utrzymywanie rodzinnej homeostazy, zaspokojenie potrzeb swoich i bliskich.

Narrative orphaned: When grief overwhelms.

WHAT IS KNOWN ON THE SUBJECT?: The loss of a parent for an adult can be devastating and can impact other relationships. The adult, in absence of parental love and support, may question their own identity. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: A narrative is used to explain the adults' experience of parental death and their new identity of being orphaned. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Increased awareness for adults grieving the loss of a parent(s), as to the normalcy of feeling orphaned Adults grieving the death of a parent(s) are provided resources and support in addressing their grieving process. ABSTRACT: Introduction When a parent dies during their child's adulthood, the life of the adult is altered as the familiarity of parental love and safety changes. The isolation and loneliness penetrates deeply as the orphaned adult must now navigate their world in absence of the most significant people in their lives, their parents. Aim To assist persons affected by parental death in understanding the normalcy of feeling orphaned while grieving. Method The use of a personal narrative to provide mental health support to others. Results The resumption of a routine that existed before parental death is possible, but takes time. Intermittent periods of grief can occur throughout one's life. Discussion When grief interrupts one's ability to function daily and the affected adult has relationships impacted by their parent's death, it is recommended that the adult seek mental health treatment. Implications for Practice Narratives can be used with persons affected by parental loss, to provide an example of normal versus complicated grieving and identify when mental health treatment is needed.