UNASSIGNED: Advances in our understanding of the genetic basis of childhood cancer, including primary central nervous system cancers, are improving the diagnosis, treatment, and clinical management of pediatric patients. To effectively translate scientific breakthroughs into enhanced clinical care, it is essential we understand and learn from the experiences of patients, families, and health professionals.
UNASSIGNED: This report summarizes findings from 4 Australian psychosocial substudies exploring the perspectives of patients, parents, clinicians, and scientists participating in research related to childhood cancer genetics. Specifically, these studies focus on the psychosocial impact of germline testing in children, surveillance for children with a cancer predisposition syndrome and the perspectives of healthcare professionals who deliver this testing and surveillance.
UNASSIGNED: Data presented highlight some of the opportunities and challenges associated with the changing context of genetic predisposition testing for children, adolescents and yound adults with cancer and illustrate how embedding psychosocial data collection in clinical research can answer important questions in the field and inform the design of patient-centric models of care, resources, and workforce training.
UNASSIGNED: By embracing these perspectives, we can ensure that advances in genetic research translate into enhanced family experiences, and, ultimately, improved outcomes for children and young people with cancer, and their families.

UNASSIGNED: The purpose of this study was to assess the long-term stability of objective and subjective psychosocial improvements and fluency more than 10 years after participation in an intensive stuttering therapy camp.
UNASSIGNED: Ten former participants in intensive stuttering therapy (IST; mean age at time of intervention 14; 2 years) participated in this study. Outcomes of the IST at that time were assessed with the Stuttering Severity Instrument (SSI-3; Riley, 1994) and a questionnaire to measure the psychosocial impact of stuttering. A semi-structured video call and a general questionnaire for the long-term evaluation were used to gauge the participants\' perceptions of the IST. These follow-up data were compared to the therapy outcomes reported by Cook (2011, 2013).
UNASSIGNED: Therapy effects on the severity of stuttering and psychosocial impact were stable over the follow-up period of more than 10 years. Moreover, scores for psychosocial impact and severity of stuttering further decreased from the end of the IST to the long-term evaluation. The intensive time and the periodically offered follow-up treatments were described as particularly positive by the participants.
UNASSIGNED: Intensive stuttering therapy in childhood or adolescence can have a long-term positive effect on both internal and external stuttering symptoms.

OBJECTIVE: this study aims to analyze QOL and psychosocial impact on patients with blood disorders.
METHODS: A cross-sectional survey design is adopted in this study. The survey questionnaire included SF-36 form for measuring quality of life (QOL), along with psychosocial impact assessment scale. Adult patients with different types of blood disorders were recruited for the survey. Out of the 417 responses received, 389 were considered for data analysis and the remaining were avoided due to incomplete data.
RESULTS: In terms of psychosocial impact scales, the highest mean is observed for financial stress (4.09 ± 1.22), followed by social exclusion (3.76 ± 1.19) and relationship challenges (3.31 ± 1.18). Among the QOL scales, the highest mean was observed for pain (3.81 ± 1.17), followed by physical functioning (3.68 ± 1.12). Statistically significant differences (p < 0.05) were observed among the participants groups characterized by age and type of disorder. Strong positive correlations between social exclusion and general health (r = 0.513), as well as pain and relationship challenges (r = 0.735) were observed.
CONCLUSIONS: Given the existing challenges in social exclusion, poor awareness, and support there is a need to develop comprehensive and personalized treatment plans integrating physical and mental support, awareness creation, and financial support.

OBJECTIVE: Female genital circumcision (FGC), a prevalent practice in the Kurdistan Region of Iraq, has significant psychosocial and sexual implications for affected women. Therefore, this study aimed to investigate these impacts among circumcised and non-circumcised Kurdish women.
METHODS: This comparative study was conducted from January 2 to June 27, 2023, at the Al Mesalla for Human Rights Improvement organization in Erbil, Iraq. Purposive sampling was used to collect data using a comprehensive questionnaire. The questionnaire included demographic information, the Depression, Anxiety, and Stress Scale (DASS-21), the Rosenberg Self-Esteem Scale (RSE), and the New Sexual Satisfaction Scale-Short Form (NSSS-S). Statistical analysis was performed using SPSS version 26 (IBM Corp., Armonk, NY), with frequency and percentage used for categorical variables and mean and standard deviation for quantitative variables. Independent sample t-tests and Chi-square tests were conducted to compare groups. A p-value of less than 0.05 was considered statistically significant.
RESULTS: A total of 772 participants were enrolled in the study, including 382 circumcised and 390 non-circumcised women. The study found significant differences between the two groups in terms of depression, self-esteem, and sexual satisfaction. Circumcised women had higher mean scores for depression (12.19 ± 5.6 vs. 10.68 ± 5.3), lower mean scores for self-esteem (24.4 ± 12.1 vs. 30.3 ± 10.1), and lower mean scores for sexual satisfaction (52.4 ± 24.6 vs. 67.6 ± 20.4) compared to non-circumcised women (all p < 0.001).
CONCLUSIONS: The study demonstrated that FGC is associated with higher levels of depression, lower self-esteem, and lower sexual satisfaction among Kurdish women. It is recommended for policymakers and healthcare providers to develop targeted interventions to address the psychosocial and sexual health needs of circumcised women in the Kurdistan Region of Iraq.

BACKGROUND: While food allergy (FA) can be fatal, the greatest public health impact of FA arguably lies in its detrimental effect on quality of life (FAQOL). Understanding the factors that contribute to FAQOL at different ages is essential to develop personalized interventions that will improve FAQOL.
OBJECTIVE: To determine the most influential factors that impact FAQOL across ages in well-phenotyped participants with confirmed FA.
METHODS: One hundred and twenty-five individuals aged 2-28 years with IgE-mediated FA completed validated age-specific FAQOL questionnaires. The relationship between demographic/clinical variables and scores were analyzed to identify key predictors of FAQOL.
RESULTS: Poor FAQOL was associated with increasing age, strict avoidance practices, reactions to trace exposures, and more severe reactions as assessed by epinephrine use, anaphylaxis, and/or treatment in the emergency department; FAQOL improved with time from the event. FAQOL was worse in subjects avoiding >2 versus ≤2 foods and in those avoiding milk, egg, soy, sesame, or wheat. Number of foods avoided had greatest impact on children ages 2-7 years, while total number of allergic reactions strongly impacted FAQOL in teens and adults; FAQOL of subjects ages 8-12 years appeared less affected by these variables compared to other age groups. A decision tree analysis identified key predictors of overall FAQOL (age, number of food avoidances, and time since epinephrine use) that can be used to guide intervention strategies to improve FAQOL.
CONCLUSIONS: We directly compared FAQOL in extensively phenotyped children, teenagers, and adults with confirmed IgE-mediated FA. Age; timing, number, and severity of reactions; type and number of FA; and food avoidance practices influence FAQOL and should guide intervention strategies.

OBJECTIVE: Ataxia telangiectasia (A-T) is an inherited multisystem disorder with increased sensitivity to ionising radiation and elevated cancer risk. Although other cancer predisposition syndromes have established cancer screening protocols, evidence-based guidelines for cancer screening in A-T are lacking. This study sought to assess feasibility of a cancer screening protocol based on whole-body MRI (WB-MRI) in children and young people with A-T.
METHODS: Children and young people with A-T were invited to undergo a one-off non-sedated 3-Tesla WB-MRI. Completion rate of WB-MRI was recorded and diagnostic image quality assessed by two experienced radiologists, with pre-specified success thresholds for scan completion of >50% participants and image quality between acceptable to excellent in 65% participants. Positive imaging findings were classified according to the ONCO-RADS system. Post-participation interviews were performed with recruited families to assess the experience of participating and feelings about waiting for, and communication of, the findings of the scan.
RESULTS: Forty-six children and young people with A-T were identified, of which 36 were eligible to participate, 18 were recruited and 16 underwent WB-MRI. Nineteen parents participated in interviews. Fifteen participants (83%) completed the full WB-MRI scan protocol. The pre-specified image quality criterion was achieved with diagnostic images obtained in at least 93% of each MRI sequence. Non-malignant scan findings were present in 4 (25%) participants. Six themes were identified from the interviews: (1) anxiety is a familiar feeling, (2) the process of MRI scanning is challenging for some children and families, (3) preparation is essential to reduce stress, (4) WB-MRI provides the reassurance about the physical health that families need, (5) WB-MRI experience turned out to be a positive experience and (6) WB-MRI allows families to be proactive.
CONCLUSIONS: This study shows that WB-MRI for cancer screening is feasible and well-accepted by children and young people with A-T and their families.

UNASSIGNED: Choroideremia (CHM) is an X-linked inherited retinal disease mostly affecting males. However, women with phenotypic and/or genotypic evidence of CHM may develop degenerative visual disability with advancing age. Our objective was to determine the visual impacts of phenotypic and/or genotypic evidence of CHM in women and its associated psychosocial burden and influence on activities of daily living (ADLs).
UNASSIGNED: We conducted an international cross-sectional survey from April to December 2022 using an e-questionnaire distributed through not-for-profit stakeholder organizations and social media plat-forms.
UNASSIGNED: With a total of 55 respondents (n = 55), most women with phenotypic and/or genotypic evidence of CHM (76%) reported a change in their visual acuity. When assessing its impact on ADLs, Pearson\'s correlation coefficient showed a negative correlation between driving (p = 0.046) and mobility capabil-ities (0.046) with the respondent\'s age. More than half of women reported being afraid, anxious, and stressed, with women below the age of 50 years old reporting a significantly higher level of distress and hopelessness (p = 0.003), anxiety (p = 0.00007), issues with relaxing (p = 0.025), and negative personal thoughts (p = 0.042).
UNASSIGNED: Overall, this survey outlines both physical and psychological burden of being a woman with phenotypic and/or genotypic evidence of CHM. Given the limited clinical research in females affected by CHM, this patient-centered survey is a crucial advocacy tool for these individuals.

UNASSIGNED: The aim of this research is to develop a multidimensional scale that reveals the psychosocial impact of coronavirus disease 2019 (COVID-19) pandemic on people with its dimensions.
UNASSIGNED: An item pool of 155 questions was created by examining the literature, and these items were turned into a questionnaire with 76 questions by taking expert opinions. During the pilot study, this questionnaire was applied to 335 people from the general population, who were reached with the snowball sampling model. The second phase of the study was carried out with a second new sample group consisting of 826 participants, and confirmatory factor analysis, mean explained variance and compound reliability, and Cronbach\'s alpha analyses were applied to the obtained data. The test-retest study of the scale was re-applied to the second sample group, reaching 826 participants with an interval of 3 weeks.
UNASSIGNED: The explained variance value of the scale was 81.352%. As a result of confirmatory factor analysis, the factor loads of the items of the scale were between 0.59 and 0.91, and the relationships between the items and the latent variables were significant at the P < .01 level; fit criteria is excellent and acceptable; Cronbach\'s alpha coefficient was found to be between 0.897 and 0.957, and as a result of the test-retest, the reliability coefficients were found to be between 0.948 and 0.950.
UNASSIGNED: From the results obtained, it was accepted that all the reliability and validity indicators of the COVID-19 pandemic Psychosocial Impact Scale are high and can be used as a valid and reliable scale to measure the psychosocial effects of the coronavirus disease 2019 pandemic process on individuals.

UNASSIGNED: Approximately 82% of children with childhood cancer survive more than five years after diagnosis. Living as a cancer survivor elicits a new reality that can include psychosocial impacts. These psychosocial impacts interact collectively, especially regarding reassimilation, and are rarely explored.
UNASSIGNED: To explore the psychosocial impacts of surviving childhood cancer and reassimilation back into society in young adult survivors of childhood cancer.
UNASSIGNED: Individual in-depth semi-structured interviews were conducted with childhood cancer survivors and explored psychosocial aspects associated with returning to work, school, and social environments after remission. Interpretive phenomenological analysis was conducted once interviews were manually transcribed. A group interview with survivors was held to discuss the study\'s findings and interpretation.
UNASSIGNED: Individual interviews and the group interview revealed three major themes: outlook on reassimilating, outlook on coping, and outlook on cancer.
UNASSIGNED: This work is a first step to understanding how survivors\' personal outlook on coping and healthcare system barriers play influential roles in reassimilation following cancer treatment. Survivors expressed the need for reliable survivorship information and improved communication with healthcare providers regarding what to expect, so they could feel prepared for life post-cancer. These aspects need to be explored more deeply through other qualitative studies.

BACKGROUND: Oral Health-Related Quality of Life (OHRQoL) is a comprehensive concept covering daily comfort, self-esteem, and satisfaction with oral health, including functional, psychological, and social aspects, as well as pain experiences. Despite abundant research on OHRQoL related to oral diseases and hygiene, there is limited data on how patients perceive changes after implant-prosthetic rehabilitation. This study aimed to evaluate OHRQoL and aesthetic perception using OHIP-14 and VAS scales respectively, before (baseline-TB), during (provisional prostheses-TP), and after (definitive prostheses-TD) implant-prosthetic rehabilitation. It also explored the impact of biological sex, substitution numbers, and aesthetic interventions on OHRQoL and VAS scores, along with changes in OHIP-14 domains.
METHODS: A longitudinal prospective single-center observational cohort study was conducted with patients requiring implant-prosthetic rehabilitation. Quality of life relating to dental implants was assessed through the Italian version of Oral Health Impact Profile-14 (IOHIP-14), which has a summary score from 14 to 70. Patients\' perceived aesthetic was analyzed through a VAS scale from 0 to 100. Generalized Linear Mixed Effect Models, Linear Mixed Effect Models, and Friedman test analyzed patient responses.
RESULTS: 99 patients (35 males, 64 females) aged 61-74, receiving various prosthetic interventions, were enrolled. Both provisional and definitive prosthetic interventions significantly decreased the odds of a worse quality of life compared to baseline, with odds ratios of 0.04 and 0.01 respectively. VAS scores increased significantly after both interventions, with estimated increases of 30.44 and 51.97 points respectively. Patient-level variability was notable, with an Intraclass Correlation Coefficient (ICC) of 0.43. While biological sex, substitution numbers, and aesthetic interventions didn\'t significantly affect VAS scores, OHRQoL domains showed significant changes post-intervention.
CONCLUSIONS: These findings support the effectiveness of implant-prosthetic interventions in improving the quality of life and perceived aesthetics of patients undergoing oral rehabilitation. They have important implications for clinical practice, highlighting the importance of individualized treatment approaches to optimize patient outcomes and satisfaction in oral health care.