Family Impact Research Articles

The impact of posterior urethral valves on pediatric quality of life and family function: Prospective analysis of serial patients managed in a dedicated multidisciplinary clinic

Posterior urethral valves (PUV) is a chronic condition that can adversely impact child and family health related quality of life (HRQOL). Surprisingly, to date, the impact of this condition on the QOL of children with PUV has not been studied. Thus, our aim is to evaluate this important aspect of care using validated questionnaires in our institutional PUV clinic. From December 2022 to January 2024, the PedsQL Inventory and associated family impact module was distributed in our PUV clinic. Higher scores reflect better HRQoL and less impact on family. Children >8 years old completed the tool themselves, otherwise parents completed the tools on behalf of the child. We compared PUV scores against reported psychometric data from healthy children and other chronic illnesses. A total of 112 families completed the questionnaires. The total HRQoL score was 80±13. Overall, we noted that the domains reflecting psychosocial impact were significantly lower than those of physical well-being (76±16 vs. 89±15 for psychosocial and physical impact, respectively; p<0.01). There was a significant difference in the psychosocial emotional impact for children managed with clean intermittent catheterization (CIC) compared to those who were not (69±21 vs. 81±16; p=0.005) (Table 2). In addition, we noted that children with PUV scored similar to healthy controls, but higher than children with other chronic illnesses. With respect to the impact on family, overall, parent, and family impacts were 76±19, 78±21, and 81±21, respectively. Chronic illness has been associated with a negative impact on HRQoL in both adults and children. We noted similar findings the present study, particularly for young children and those who are maintained on CIC. To our knowledge, this is the first study to evaluate the impact of PUV on a child's HRQoL as well as the impact on the family, and to document a negative psychosocial impact of CIC in this population. However, there are some important limitations to be addressed including relying on families to complete questionnaires accurately during busy clinic visits and the lack of controls from the same environment. When compared to healthy controls, PUV patients score similarly in HRQoL assessment. In addition, children <3years of age report a negative impact on physical well being, and CIC negatively impacts the emotional well-being. These data can be used to advocate for better mental health supports and social work for these children.

The Arabian Muslim Family and Globalization Impact

The Arabian Muslim Family and Globalization Impact

Analysis of the Impact of Family Upbringing Methods on Positive Psychological Qualities of Adolescents and their Cultivation Strategies

Analysis of the Impact of Family Upbringing Methods on Positive Psychological Qualities of Adolescents and their Cultivation Strategies

Tradução e adaptação para o processo de validação transcultural da Family Impact of Assistive Technology Scale for Augmentative and Alternative Communication (FIATS-AAC)

ABSTRACT Purpose: to present data from the theoretical validation and face validation of the Family Impact of Assistive Technology Scale for Augmentative and Alternative Communication for the Brazilian context. Methods: an initial translation, a reconciled translation, a content assessment by experts, a back-translation, and face validation. Researchers, bilingual translators, and judges specialized in alternative and augmented communication, participated in the study. Results: the analysis of the translations and back-translations showed high reliability in most items, with some discrepancies adjusted according to the experience of professionals in the area. The face validation included the participation of parents/caregivers of children/adolescents who use alternative and augmented communication, resulting in adjustments to the items that generated questions. Conclusion: the study concludes that the research objectives were achieved, contributing to the continuity of the validation process of the scale’s psychometric properties, thus, providing a tool that assesses the impact of using alternative communication resources from the family's perspective.

Predictors of loneliness among middle childhood and adolescence during the COVID-19 pandemic.

Social contexts (e.g., family, friends) are important in predicting and preventing loneliness in middle childhood (MC) and adolescence; however, these social contexts were disrupted during the COVID-19 pandemic. Comparison of social context factors that may differentially contribute to loneliness at each developmental stage (MC vs. adolescence) during the COVID-19 pandemic have been overlooked. This study examined longitudinal predictors of loneliness, including social contexts and COVID-19 impact, within MC (8-12y) and adolescence (13-17y). Parents reported on demographic information, and their children completed surveys on COVID-19 impact, loneliness, and family functioning using the COVID-19 Exposure and Family Impact Survey (CEFIS), the NIH Toolbox Loneliness (Ages 8-17) measure, and the PROMIS Family Relationships Short Form 4a measure, respectively. Regression models examined time one (T1; May-June 2020) predictors of time two (T2; November 2020-January 2021) MC child (n=92, Mage=10.03) and adolescent (n=56, Mage=14.66) loneliness. For the MC child model, significant predictors of higher loneliness included worse family functioning as well as higher COVID-19 impact and lower family income. On the other hand, higher adolescent loneliness was significantly predicted by not having married/partnered parents and was marginally significantly predicted by higher COVID-19 impact. The regression model with the full sample and interaction terms revealed no significant interactions, but that lower family functioning and higher COVID-19 impact were significant predictors of higher loneliness. Lower family income and lower in-person communication were marginally significant predictors of higher loneliness in the combined interaction model. Lastly, further exploratory mediation analyses displayed that family functioning significantly mediated the relationship between COVID-19 impact and T2 loneliness only for MC children and the full sample. Results support future interventions focused on optimizing family functioning to help mitigate MC loneliness in the context of adversity, such as a global pandemic.

Parental emotions in families of children and adolescents with and without autism spectrum disorder.

This study assessed the influence of sociodemographic conditions, oral hygiene habits, and the socio-psychological need for orthodontic treatment on the emotions of caregivers of children with and without autism spectrum disorder (ASD). We conducted a comparative cross-sectional study with families of individuals aged 6 to 14 years at a reference center for neurodevelopmental disorders and two dental school clinics in northeastern Brazil. Caregiver emotions were assessed using the 'Parental Emotions' domain of the Family Impact Scale (FIS). We analyzed sociodemographic variables, oral hygiene habits, and sociopsychological need for orthodontic treatment using the esthetic component of the Index of Orthodontic Treatment Need (IOTN). We used descriptive and hierarchical Poisson regression analyses with robust variance (α = 5%). The study included 144 families evenly distributed across the groups. The caregiver group with ASD demonstrated a higher total score for parental emotions (p < 0.001). Factors associated with this factor included caregiver responsible for brushing (PR = 1.34; 95%CI: 1.12-1.59), mandatory need for orthodontic treatment (PR = 1.25; 95%CI: 1.07-1.46), and caregivers' education up to 8 years (PR = 1.45; 95%CI: 1.02-2.07). Caregivers with lower income showed a lower prevalence of parental emotions (PR = 0.57; 95%CI: 0.35-0.93). Caregivers of children with ASD exhibited a higher emotional burden. Factors associated with parental emotions included responsibility for tooth brushing attributed to caregivers, sociopsychological need for orthodontic treatment, and family income.

Assessing the Impact of Oral Disorders on the Oral Health-Related Quality of Life of Preschool Children and their Families: A Cross-sectional Study

Introduction: Oral disorders such as Traumatic Dental Injury (TDI) and Early Childhood Caries (ECC) can significantly impact the functional, social, and psychological well-being of growing children and their families. The Early Childhood Oral Health Impact Scale (ECOHIS) serves as a proxy assessment of Oral Health-Related Quality of Life (OHRQoL) in children, developed to evaluate the effects on the quality of life of preschool children. Aim: To assess the impact of oral disorders on the OHRQoL of children aged two to six years and their families. Materials and Methods: In this cross-sectional study, a total of 1000 children aged 2 to 6 years from various preschools in South Bangalore were selected. All children underwent examinations for caries, stains, and fractures. A modified questionnaire survey based on ECOHIS, consisting of 26 questions, was completed by the parents of the children. The answered questionnaire was then evaluated to assess the impact of dental conditions on the quality of life of both children and parents. Kruskal-Wallis Test, Dunn’s post-hoc Test, and Mann-Whitney Test were used to compare the mean scores of different domains of the OHRQoL scale based on ECC and dental trauma, respectively. Results: The severity of ECC demonstrated an adverse effect on the symptom domain (p&lt;0.001), function domain (p=0.002), psychology domain (p=0.03), and the entire score of the Child Impact Section (CIS) (p&lt;0.001). In the Family Impact Section (FIS), the mean scores of the family distress domain and the overall FIS were statistically significant (p&lt;0.001). Dental trauma also showed an adverse effect on the symptoms domain (p&lt;0.001) and the entire scores of the CIS (p=0.001). Additionally, the mean scores of the family distress domain and the overall FIS were statistically significant (p&lt;0.001). Conclusion: The presence of ECC and dental trauma is likely to have a negative impact on the physical, psychological, and emotional well-being of preschool-aged children and their families.

Validity and reliability of the Brazilian version of the Illness Perception Questionnaire-Revised for Dental.

This study aimed to test the validity and reliability of the Brazilian version of the "Illness Perception Questionnaire-Revised for Dental" (IPQ-RD) in parents/guardians of children aged six to 14 years. The sample consisted of 63 parents/guardians of schoolchildren from the municipal school system of Teófilo Otoni, MG. Remote and virtual data collection consisted of self-completion of personal data, socioeconomic questionnaire and the Brazilian short versions of the "Parental-Caregiver Perceptions Questionnaire" (16-P-CPQ) and the "Family Impact Scale" (4-FIS). The IPQ-RD was applied by telephone interview. Almost half of the sample belonged to socioeconomic classes C1 and C2. Approximately 1/3 classified their child's oral health as "regular" or "poor", while 11.1% reported "strong" or "very strong" impact on their child's well-being. The items most frequently cited as having an impact on the four domains of the 16-P-CPQ were: "bad breath" (23.8%), "mouth breathing" (20.7%), "feeling anxious or afraid" (20.7%), and "paying attention at school" (10%). In the 4-FIS, 11.1% "had little time for themselves or the family". There were higher IPQ-RD scores in the "disease coherence" domain for women and lower values of "emotional dimensions" for parents/guardians with incomplete education. The mean IPQ-RD score was 126.4 (±15.1), and domain scores were positively correlated. The internal consistency was "almost perfect" for the IPQ-RD total score, ranging from "moderate" to "almost perfect" for the "child-control" and "child-consequences" domains. The intraclass correlation coefficient ranged from 0.04 (poor) to 0.68 (substantial). The Brazilian Portuguese version of the IPQ-RD proved to be valid and reliable for assessing the cognitive and emotional perception of parents/guardians about childhood dental caries.

Psychosocial wellbeing, parental concerns, and familial impact of children with developmental coordination disorder

BackgroundDevelopmental Coordination Disorder (DCD) is a neurodevelopmental condition impacting motor skill acquisition and competence. While previous studies have identified adverse psychosocial outcomes in DCD, they are limited by small or population-screened, community-based samples. AimsTo understand the psychosocial difficulties, parental concerns, and familial impacts of childhood DCD in a large population-based sample. Methods and proceduresParents of 310 children aged 4 – 18 years with a diagnosis of DCD (or synonymous term) completed the Impact for DCD survey. Parent-rated measures of emotional problems, peer problems, and prosocial behaviour were compared to normative data. Parental concerns for the impact of DCD on participation, interaction, emotional well-being, and the family system were examined. Outcomes and resultsCompared to typically developing children, children with DCD were rated significantly higher for emotional and peer problems, and significantly lower for prosocial behaviours. Parents most commonly reported concerns for their child’s future and withdrawal from physical activity. The presence of one or more co-occurring disorders did not significantly influence outcomes. Conclusion and implicationsFindings highlight the poor psychosocial outcomes for children with DCD. Crucially, poor psychosocial outcomes were just as likely in those with a single diagnosis of DCD as those with DCD and multiple co-occurring diagnoses. Parents reported concerns for their child (i.e., non-participation and social withdrawal) that are not targeted in existing DCD intervention modalities and emphasised the impact of DCD on the whole family unit. What this paper addsThis paper presents data from the largest parent-reported survey of children with a known diagnosis of DCD (or synonymous labels). It highlights the significant impact of DCD on psychosocial outcomes in children across age groups. The children in this study were rated by their parents to have significantly higher levels of emotional and peer problems, and lower prosocial behaviours, than similarly aged Australian children without DCD. It also challenges the misconception that poor psychosocial outcomes in DCD are the result of co-occurring disorders, with outcomes observed to be as poor in children with a sole diagnosis of DCD in this sample. Furthermore, findings highlighted the significant worry and concern that parents with DCD face, particularly around their child’s participation and their emotional health. Finally, parents reported on the considerable impact that DCD had on their family unit, regularly causing worry and concern, influencing their choice of activities, and causing financial strain. These concerns and impacts are not addressed in current intervention models for DCD and highlight the need for support mechanisms moving forward.

The Impact of Raising Children with Barth Syndrome on Parental Health-Related Quality of Life and Family Functioning: Preliminary Reliability and Validity of the PedsQL™ Family Impact Module.

This study examined the preliminary reliability and validity of the PedsQL™ Family Impact Module (PedsQL FIM) in families of children with Barth syndrome (BTHS). A total of 72 parents with children or youth between the ages of 5 and 19 participated in this study. Thirty-three parents of children with BTHS and 39 parents of unaffected children completed the PedsQL FIM and a demographic information form. Internal consistency reliability and item-total correlations were calculated to test the reliability of the PedsQL FIM. Construct validity was examined using the known-groups method. We estimated the mean score differences of the PedsQL FIM between the two groups using three different models, including unadjusted, multivariate regression, and propensity score matching with inverse probability of treatment weighting (PS-IPTW) models. The Cronbach's alpha coefficients were greater than 0.70 for all scales of the PedsQL FIM, except for the communication scale. The item-total correlations were significant for all scales with moderate to high correlations (p < .05). In construct validity, the mean scores of the PedsQL FIM between the two groups were significantly different (p < .05) for all scales and total score in the unadjusted and PS-IPTW models. However, in the multivariate regression model, the family relationships scale was not significant between the two groups. The PedsQL FIM demonstrated adequate measurement properties of preliminary reliability and validity in assessing the impact of children with BTHS on parental health-related quality of life (HRQoL) and family functioning. Further research needs to be conducted to examine the psychometric properties of the PedsQL FIM with a large sample of BTHS and with other pediatric rare diseases.

Transdisciplinary assessment frame as leverage for integrated care

In patients with severe, complex, and long-lasting psychiatric problems, psychopathology becomes intrinsically intertwined with personality, biological, social, and existential well-being. Consequently, the share of experience of general well-being becomes more critical. Therefore, apart from standard evidence-based treatment, added guidelines and good practices concerning suicidality, lifestyle, family impact and resource, human custodial measures, collaboration with patients and their expertise, and spiritual and existential guidance, complement standard guidelines. Unfortunately, these extra guidelines are used only as an add-on with traditional treatments or separated in a recovery approach where treatment would no longer be the focus. Because of the lasting need for integrated and precision care in these patients, UPC Duffel Belgium started an integrated plan for precision care. The first step in this plan was the development of a three-level assessment frame, a 'general treatment' backbone as leverage for uniting the different specializations, and a frame in which all interdisciplinary and transdisciplinary activities find their place. The next step is the collaborative use of the system and implementation of the associated skills and attitudes for all participants.&#x0D; The first person-centered level is the individual psychotherapeutic level at which criteria for treatment indication are evaluated in an overview that prioritizes with the patients’ different problems, systematically organized in four axes. Axis I, of distant fixed factors of nature and nurture is associated with the latent intrapersonal or permanent contextual or cultural factors (Axis II). The outcome behavior Axis III shows problem behaviors as a flip side of their associated therapeutic goals, followed by Axis IV with direct behavior-triggering and factual temporary, environmental, and relational/contextual factors. This case conceptualization is feasibly visualized and translated into a short explanation and hope inspiring narrative with the patient. &#x0D; The second interdisciplinary level is the team level, at which treatment criteria are evaluated in the context of the treatment history. The staff and the patient check ten points: identification of the patient, triggering events for admission, previous treatments with successes and failures, important influences of personality, contextual or cultural factors as far as conditional for the present treatment, preferences of the patient, short term risks, long term risks, treatment priorities, ultimate goal and deselected treatment targets, criteria for dismission and contextual points of attention. Experience experts coach patients, using these points as a guide, to emancipate these patients to equality and to informed negotiator in their treatment, thus obliging the teams to prepare for a transparent discussion. &#x0D; The third transdisciplinary level is the hospital level which automatically and repeatedly evaluates the stay's effect by Routine Outcome Monitoring in all domains of functioning as in the International Classification of Functioning model (ICF). This model provides an overview of functioning, activity, and participation problems and resources and indicates the right places for engaging in transdisciplinary actions and collaboration beyond the restricted cure field of psychiatry. The functioning chart is a hinge that connects the psychopathology frame and the complementary positive health domains as both map on the same ICF scheme.

Family involvement in care: essential next step?!

First, we outline the current state of family involvement in mental health care. Based on testimonials from families and family organizations, the strengths, needs and deficits regarding family involvement in mental health care are listed. Furthermore, some innovative good practices are explained, demonstrating the ongoing evolution in healthcare.&#x0D; Research has demonstrated that treatement, involving, supporting and informing family members and children has an important positive impact for family, patient and care provider.&#x0D; However, too often Familieplaform receive signals from family members and family organizations that family invovement in mental health care is limited. Moreover, great differences exist between organisations, teams and health care provivers: while some organisations/teams/care providers akcnowlegde the importance of family (involvement) and make great efforts to maximale involve the context, many others don’t. By creating frameworks - such as the multidisciplinary guideline for involving relatives in mental health care - we want to invite mental healthcare organizations to systematically make the ‘family reflex’ and to see family as equal partners in care.&#x0D; The ‘Family Reflex’ translates the guideline on involving relatives in mental health care by offering online trainings, a Quickscan, coaching programs, etc. During this workshop, we will discuss the recommendations of the guideline, the merrit of the Family Reflex and our experiences in helping organisations and care providers to integrate these recommendations into their own practice. &#x0D; We discuss with participants on different topics : professional secrecy, support for family members/ children, participation in care.&#x0D; Concrete:&#x0D; explaination 45min&#x0D; interaction 3x15 min (each topic/ can be less)&#x0D; &#x0D; &#x0D; &#x0D;

Assessment of families'experience with care integration within an aerodigestive program.

The objective of this study was to assess if enrollment in a pediatric multidisciplinary aerodigestive program significantly impacted families' experiences with care integration. A previously validated 48-question Pediatric Integrated Care Survey (PICS) was administered in a cross-sectional manner to both new (new-ADC) and established (est-ADC) patients presenting for an outpatient Aerodigestive Center visit at Boston Children's Hospital. Survey results were grouped into the following five care coordination domains: (1) access to care, (2) care goal creation/planning, (3) family impact, (4) communication with health care providers, and (5) team functioning. Families were asked to rate their care integration experiences in the prior 12 months using yes/no and Likert-based questions. Comparisons were analyzed using logistic regression. Factor analysis was also performed. Ninety patient families were surveyed: 54 (60%) est-ADC patients and 36 (40%) new-ADC patients. Est-ADC patients reported higher levels of experience with team functioning, provider awareness of prior testing, provider communication, and access to alternative methods of communication. Self-identified non-White patients reported lower satisfaction in team functioning and provider understanding of their child's long-term care plan. No significant differences in care integration experiences before and after the onset of the coronavirus pandemic were seen. Patients enrolled in aerodigestive centers experienced improved care integration, most significantly in provider communication and team functioning. Despite these improvements, self-identified non-White families reported a lower care integration experience.

Economic burden and health-related quality of life in patients with neurofibromatosis type 1 in Greece

Abstract Background Neurofibromatosis (NF) is a group of rare genetic disorders characterized by the development of tumours that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord and all other parts of the body. The disease burden on Greek patients and caregivers is unknown. Objective The aim of this study is to determine the societal economic burden and health-related quality of life (HRQoL) of families with neurofibromatosis type 1 (NF1) in Greece. Methods A cross-sectional study was conducted in which an online questionnaire was completed by NF1 patients and their caregivers. A cost of illness model was developed in which costs per NF1 patient were calculated from a societal perspective and extrapolated to the total affected population in Greece. Finally, the 36-item PedsQL™ Family Impact Module was used to measure the HRQoL of families with NF1 members. Results The economic burden of NF1 was estimated at €21,594 per patient in 2022. When extrapolating this outcome across all affected persons, the average annual cost was €56,319,583. Out-of-pocket expenses accounted for 10% of the total. Results of the analysis on HRQoL indicated a significant burden on family members representing the caregivers of NF1 patients with the majority of scores falling below 50 and a mean total score of 45. Conclusions The results highlight the considerable burden of NF1 not only in terms of the high costs but also in terms of reduced HRQoL for patients’ families.

Kualitas hidup terkait kesehatan gigi dan mulut pada anak prasekolah di Batam

Background: The high number of dental and oral health problems in preschool children, such as dental caries, can indirectly interfere with children's development and daily activities. This situation will affect children's Oral-Health Related Quality of Life (OHRQoL) up to his family. Objective: Defines the quality of life related to dental and oral health at Nabilah Kindergarten in Batam City District. Methods: This research is a descriptive observational study with a cross-sectional design to describe the Oral-Health Related Quality of Life at Nabilah Kindergarten in Batam City District. The research was conducted by distributing ECOHIS questionnaire sheets consisting of 13 question items to 79 mothers of Nabilah Kindergarten students in Batam City District. Respondents filled out the informed consent and ECOHIS questionnaire sheets. The assessment of Oral-Health Related Quality of Life in the questionnaire is divided into four categories, namely good, sufficient, bad, and very bad. The score of each respondent's answer is added up and then adjusted based on the score range of the ECOHIS questionnaire. Results: The results showed that Oral-Health Related Quality of Life in the children impact section was in the good category 68.4%, sufficient 29.1%, bad 2.5%. Meanwhile, the family impact section was 58.2% good, 35.4% sufficient, and 6.3% bad. Conclusion: Oral-Health Related Quality of Life at Nabilah Kindergarten in Batam City District tends to be in the good category.

The last 22 years of student lending – Analysis of the socio-economic impact of the student loan product family

The Student Loan Center was established 22 years ago by the first civic government with the aim of increasing access to higher education. The measure was particularly important in channeling talented students from poor financial circumstances into higher education. Over the past two decades, both higher education and the socio-economic environment surrounding higher education have changed considerably. The aim of this study is to examine the extent to which student loan instruments have been able to maintain their effectiveness over this period. Through a historical overview and the presentation of results from questionnaire data collection, the study demonstrates that student loan products have adapted to the changing environment by introducing and adapting existing products, and that they are still very popular among higher education students.

WHO DIES IN A RURAL NURSING HOME WITH AND WITHOUT FAMILY? EVIDENCE FROM THE UTAH POPULATION DATABASE

Abstract Rural nursing homes (NHs) are an increasingly important focus for policy makers given the lack of available post-acute and long-term care services in these areas. Families often play a critical role in filling this void in services and supporting NH residents at the end of life (EOL). No population-based studies to date, however, have documented the characteristics of families of persons who die in rural NHs. This study aimed to describe the size and composition of first-degree families (FDF) of Utah NH residents who died in rural/frontier NHs 1998-2016 (n=10,567). Using the Utah Population Caregiving Database, we linked rural/frontier NH decedents to their FDF (n=31,118; children=53.7%; siblings=33.8%; spouses=11.3%; parents=1.1%) and compared characteristics of those with and without FDF. Compared to rural/frontier NH decedents with FDF (77.5%), those without (22.5%) were more likely to be older (median 85.7 vs 84.8), female (61.3% vs 56.8%), Hispanic or Non-White Non-Hispanic (6.8% vs 3.7%), and less educated (&amp;lt;9th grade; 45.9% vs 37.4%), all p&amp;lt;0.001. There were no differences in diagnosis of dementia, Charlson Comorbidity Index, or hospitalizations in the last 6 months of life. Persons who live and die in rural NHs without FDF may be in double jeopardy, if you will, given the lack of family support and few to no options for care. Understanding the impact of family, or lack thereof, on rural NH resident EOL care trajectories is an important next step.

Social adjustment in children diagnosed with sickle cell disease: A retrospective study.

Children with sickle cell disease (SCD) are at risk for physical, psychological, and social adjustment challenges. This study sought to investigate social adjustment and related factors in children living with SCD. Data from 32 children (50% male, mean age=10.32years, SD=3.27) were retrospectively collected from a neuropsychology clinic at a tertiary care pediatric hospital. Social adjustment was measured using the Behavior Assessment System for Children (BASC-3) parent-proxy, withdrawal subscale, and the Pediatric Quality of Life Inventory (PedsQL) Generic Module Social Functioning self- and parent-proxy subscales. Other measures captured executive functioning (i.e., Behavior Rating Inventory of Executive Function, Second Edition (BRIEF-2) Parent Form) and non-disease-related associations with social adjustment, including number of years in Canada and family functioning (i.e., PedsQL Family Impact Module). Sixteen percent of patients reported elevated social adjustment difficulties. Multiple linear regression found better family functioning [B=.48, t=2.65, p=.016], and higher executive functioning [B=-.43, t=-2.39, p=.028] were related to higher scores on the PedsQL parent-proxy ratings of social adjustment [F(4,18)=5.88, p=.003]. Male sex [B=.54, t=3.08, p=.005], and having lived more years in Canada [B=.55, t=2.81, p=.009], were related to higher PedsQL self-reported social adjustment [F(4,23)=3.75, p=.017]. The model examining the BASC-3 withdrawal subscale was not statistically significant [F(4,16)=1.63, p=.22]. Social adjustment in children diagnosed with SCD warrants future research to understand the influence of executive function, and non-disease-related factors, particularly focusing on sociocultural factors.

Health-related quality of life and family functioning of primary caregivers of children with down syndrome.

Down Syndrome (DS; OMIM #190685), known as trisomy 21, is one of the most common genetic disorders in the human population and the commonest known cause of intellectual disability. The study was conducted to investigate the quality of life (QoL) of children with DS syndrome and its impact on family functioning. To assess the quality of life of children with trisomy 21 and the impact of the disorder on the family. We used a cross-sectional questionnaire study. The respondents were 52 parents of children with trisomy 21. The following structured questionnaires were used: the PedsQL™ 4.0 Generic Core Scales, the PedsQL™ Family Impact Module and Study-Specific Questionnaire (SSQ). The combined scores, with a mean value of approximately 55 out of a possible 100 points, indicated a significant impact of the child's genetic defect on family functioning. In the overall QOL, the highest rated domain was physical functioning (x̅ =60.14; SD = 23.82) and the lowest was school functioning (x̅ =51.36; SD = 18.72). Better school functioning (p = 0.022) was reported for girls. The presence of reduced muscle tone also had a negative impact on the child's functioning in the physical (p = 0.036), emotional (p = 0.011), psychosocial (p = 0.027) and overall QOL domains (p = 0.023). Overall, our results showed that the quality of life of children with trisomy 21 is impaired. There was a positive association between the child's QOL and the QOL of their parents, as well as the general functioning of the child's whole family. For this reason, an improvement in the QOL of parents and the family functioning is closely related to an increased QOL of the child. The continuous deepening of knowledge of QOL in individual trisomy 21 management allows for better preparation and ongoing care for the patients concerned.

The patient journey in Chronic Obstructive Pulmonary Disease (COPD): a human factors qualitative international study to understand the needs of people living with COPD

BackgroundChronic obstructive pulmonary disease (COPD) is a common condition that causes irreversible airway obstruction. Fatigue and exertional dyspnoea, for example, have a detrimental impact on the patient’s daily life. Current research has revealed the need to empower the patient, which can result in not only educated and effective decision-making, but also a considerable improvement in patient satisfaction and treatment compliance.The current study aimed to investigate the perspectives and requirements of people living with COPD to possibly explore new ways to manage their disease.MethodsAdults with COPD from 8 European countries were interviewed by human factor experts to evaluate their disease journey through the gathering of information on the age, performance, length, and impact of diagnosis, symptoms progression, and family and friends' reactions. The assessment of present symptoms, services, and challenges was performed through a 90-min semi-structured interview. To identify possible unmet needs of participants, a generic thematic method was used to explore patterns, themes, linkages, and sequences within the data collected. Flow charts and diagrams were created to communicate the primary findings. Following analysis, the data was consolidated into cohesive insights and conversation themes relevant to determining the patient's unmet needs.ResultsThe 62, who voluntarily accepted to be interviewed, were patients (61% females, aged 32–70 years) with a COPD diagnosis for at least 6 months with stable symptoms of different severity. The main challenges expressed by the patients were the impact on their lifestyle, reduced physical activity, and issues with their mobility. About one-fourth had challenges with their symptoms or medication including difficulty in breathing. Beyond finding a cure for COPD was the primary goal for patients, their main needs were to receive adequate information on the disease and treatments, and to have adequate support to improve physical activity and mobility, helpful both for patients and their families.ConclusionsThese results could aid in the creation of new ideas and concepts to improve our patient’s quality of life, encouraging a holistic approach to people living with COPD and reinforcing the commitment to understanding their needs.