Psychosocial readiness assessment for heart transplant candidates.

BACKGROUND: Psychosocial evaluation for transplant suitability is required by the Centers for Medicare and Medicaid Services (CMS) as a condition of participation for transplant programs. There are no regulations regarding follow-up reassessment for transplant readiness after waitlisting. OBJECTIVES: An evidence-based pilot project was developed and implemented to evaluate the feasibility of psychosocial readiness assessments for waitlisted heart transplantation candidates. The primary aim was to test the feasibility of these assessments in practice from a patient and programmatic perspective. METHODS: During a 12-week period, waitlisted outpatients underwent one assessment each. Socioeconomic elements of caregiver support, housing, transportation, and insurance coverage status were assessed by simple using "yes/no" questions. To assess mental health needs, the General Anxiety Disorder-7 questionnaire (GAD-7) and the Patient Health Questionnaire-8 (PHQ-8) tools were utilized. Rescheduled readiness visits and no-show rates were measured. A post-implementation Qualtrics survey was administered to measure team member perceptions of feasibility. RESULTS: A total of 57 patients were assessed during the 12-week period. The primary aim of feasibility was achieved with 93 % of visits performed with freedom from rescheduling or patient no-show to the visit. Additionally, 75 % of team members reported the readiness assessments were feasible to complete in practice. CONCLUSIONS: Addressing the non-medical and mental health needs of waitlisted heart transplant patients allows transplant programs to maintain candidates with necessary resources and care. The readiness assessments are feasible in practice and may serve to reduce untoward outcomes in the post-transplant phase by providing targeted care prior to the time of transplant.

Association of the Stanford Integrated Psychosocial Assessment for Transplant and 1-Year Outcome of Living Kidney Transplantation in Japan.

BACKGROUND: Because most kidney transplantations in Japan are performed on the basis of living donors, after-transplant outcomes should achieve optimum results, overcoming participants' possible reduced adherence. OBJECTIVE: To investigate the association between the Japanese version of the Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT-J) and outcomes, 1 year after the patient's living kidney transplant (LKT). METHODS: The prospective cohort study was undertaken at Tokyo Women's Medical University Hospital from January 2020 to July 2021, with a 1-year follow-up period. The SIPAT-J assesses 18 psychosocial risk factors: (1) Patient's Readiness Level and Illness Management (SIPAT A), (2) Social Support System Level of Readiness (SIPAT B), (3) Psychological Stability and Psychopathology (SIPAT C), and (4) Lifestyle and Effect of Substance Use (SIPAT D). The evaluators, a psychiatrist and 3 clinical psychologists, conducted an independent, blinded application of the SIPAT-J using participants' medical records. The study focused on physical composite outcomes, psychiatric outcomes, and nonadherent behaviors. RESULTS: The participants were 173 LKT recipients (median age [interquartile range], 51 [38-59]); 67.1% were male and 67.1% were employed. The median (interquartile range) SIPAT scores were SIPAT A [7 (5-9)], SIPAT B [7 (5-9)], SIPAT C [2 (0-4)], SIPAT D [3 (3-4)], and SIPAT total [20 (16-23)]. The physical composite outcome was 25 (14.5%), psychiatric outcome 9 (5.2%), and nonadherent behavior 17 (9.8%). SIPAT C (odds ratio = 1.34, 95% confidence interval = 1.06-1.72, P = 0.02) was significantly associated with the psychiatric outcome. SIPAT B (odds ratio = 1.49, 95% confidence interval = 1.12-1.98, P = 0.01) and SIPAT total (odds ratio = 1.13, 95% confidence interval = 1.03-1.24, P = 0.01) were significantly associated with nonadherent behaviors. There was no significant association between the SIPAT and physical composite outcomes. CONCLUSION: This study is the first to examine the association between SIPAT and physical and psychiatric outcomes 1 year after LKT, controlling for follow-up periods and factors other than SIPAT. Comprehensive psychosocial assessment before LKT and early identification of factors that may negatively affect transplant success can allow targeted interventions to be implemented and increase the likelihood of favorable recipient outcomes.

Engaging Parents Affected by Mental Health Problems in Pediatric and Gynecologic Practices-Implications of the KID-PROTEKT Study.

Children of parents with mental illness are at higher risk of developing cognitive, mental health or physical health difficulties. Previous studies have described several barriers for reaching parents with mental health problems (MHPs) and their utilization of psychosocial services. We conducted a cluster randomized controlled study in 24 pediatric and gynecologic practices to evaluate KID-PROTEKT, a psychosocial healthcare intervention that comprises a psychosocial assessment to identify families with psychosocial needs and refer them to support services. In this paper, we analyzed whether psychosocially distressed parents with additional MHPs (identified by the PHQ-9 and GAD-7) had higher support needs, could be referred to support and utilized it in comparison to parents with psychosocial burden only. In total, 178 pregnant women and mothers with psychosocial burden were included, of whom 55 had MHPs. Participants with MHPs were distressed in their relationships more often and medical staff rated their level of support needs higher compared to parents without MHPs. There were no significant differences between the groups regarding whether they were referred to support services or utilized the recommended services. All participants were most frequently referred to family or parent counseling/care or childcare assistance. The results indicate that despite existing barriers, parents with MHPs could be reached and identified by the KID-PROTEKT psychosocial assessment. A psychosocial intervention like KID-PROTEKT can help to provide support for mentally ill parents.

The psychosocial impact of caring for children with Dravet Syndrome.

This study examined the psychosocial impact on parents of children affected by Dravet Syndrome (DS), a rare drug-resistant developmental encephalopathic epileptic syndrome which affects children at an early age and that involves severe cognitive, behavioral, and motor impairments. DS has a major negative impact on caregivers, mainly on their physical and mental health, and on their social relationships and economic resources. Similarly, it has been suggested that the quality of life of caregivers and children with DS is lower compared to the general population, especially because of the severe and frequent seizures suffered by the child, leaving caregivers with heavy burdens. The main aim of the current study was to assess in detail the psychosocial impact that having a child with DS represents for their parents or caregivers. To this end, a standardized assessment tool was used, and the results were compared to those of a control group. The results highlighted critical differences in most of the areas explored, revealing a marked difference between parents caring of children with DS and parents of normotypically developing children in the psychosocial wellness. This study provides important qualitative data to help us understand and identify the complexity of DS.

How to select a patient for LVAD.

Left ventricular assist device (LVAD) implantation leads to improvement in symptoms and survival in patients with advanced heart failure. An important factor in improving outcomes post-LVAD implantation is optimal preoperative patient selection and optimization. In this review, we highlight the latest on the evaluation of patients with advanced heart failure for LVAD candidacy, including discussion of patient selection, implantation timing, laboratory and other testing considerations, and the importance of psychosocial evaluation. Such thorough evaluation by multidisciplinary team can serve to improve the outcomes of a complex group of patients with advanced heart failure being evaluated for LVAD.

Characterization of the stanford integrated psychosocial assessment for transplant for heart, liver, and kidney transplant candidates in Japan.

BACKGROUND: The Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT) is a comprehensive psychosocial assessment proven useful for predicting the outcomes of organ transplantation that is expected to be useful in Japan. However, the characteristics of organ-specific SIPAT scores for organ transplant recipient candidates in Japan are unclear and, to date, the SIPAT has not been properly utilized in clinical practice. The purpose of this study was to present basic data that can be used to establish the relation between SIPAT scores and post-transplantation psychosocial outcomes as well as organ-specific outcomes. METHODS: This study included 167 transplant recipient candidates (25 heart, 71 liver, and 71 kidney) who completed a semi-structured interview based on the Japanese version of SIPAT (SIPAT-J) prior to transplantation. The differences between organs in terms of SIPAT scores and differences in SIPAT scores based on demographic data were comparatively analyzed. RESULTS: The total SIPAT scores were higher for liver recipient candidates than for heart recipient candidates (P = .019). Regarding the subscales, SIPAT B (social support system) scores were higher for liver and kidney recipient candidates than for heart recipient candidates (P = .021), whereas SIPAT C (psychological stability and psychopathology) scores were higher for liver recipient candidates than for kidney recipient candidates (P = .002). Recipient candidates with a history of psychiatric treatment and those who were unemployed had higher SIPAT scores, regardless of the transplant organ, than recipient candidates without a history of psychiatric treatment and those who were employed (P < .001, P = .016, respectively). CONCLUSIONS: There were notable differences in the total SIPAT-J and subscale scores among the liver, heart, and kidney recipient candidates. Each organ was associated with specific psychosocial issues that should be addressed before transplantation. Interventions such as information provision and patient education based on SIPAT assessment results for each organ may improve recipient post-transplant outcomes.

Psychosocial assessment of adolescents and young adults in paediatric hospital settings: patient and staff perspectives on implementation of the e-HEEADSSS.

BACKGROUND: The main causes of morbidity and mortality for adolescents and young adults are preventable and stem from psychosocial and behavioural concerns. Psychosocial assessments can help clinicians to identify and respond holistically to risks and strengths that may impact upon a young person's physical and mental health. Despite broad support at a policy level, the implementation of routine psychosocial screening for young people remains varied in Australian health settings. The current study focused on the pilot implementation of a digital patient-completed psychosocial assessment (the e-HEEADSSS) at the Sydney Children's Hospital Network. The aim of this research was to evaluate patient and staff barriers and facilitators to local implementation. METHODS: The research used a qualitative descriptive research design. Semi-structured interviews were conducted online with 8 young patients and 8 staff members who had completed or actioned an e-HEEADSSS assessment within the prior 5 weeks. Qualitative coding of interview transcripts was carried out in NVivo 12. The Consolidated Framework for Implementation Research guided the interview framework and qualitative analyses. RESULTS: Results demonstrated strong support for the e-HEEADSSS from patients and staff. Key reported facilitators included strong design and functionality, reduced time requirements, greater convenience, improved disclosure, adaptability across settings, greater perceived privacy, improved fidelity, and reduced stigma for young people. The key barriers were related to concerns over available resources, the sustainability and continuity of staff training, perceived availability of clinical pathways for follow-up and referrals, and risks related to off-site completions. Clinicians need to adequately explain the e-HEEADSSS assessment to patients, educate them about it, and make sure that they receive timely feedback on the results. Greater reassurance and education regarding the rigour of confidentiality and data handling procedures is required for patients and staff. CONCLUSIONS: Our findings indicate that continued work is required to support the integration and sustainability of digital psychosocial assessments for young people at the Sydney Children's Hospital Network. The e-HEEADSSS shows promise as an implementable intervention to achieve this goal. Further research is required to determine the scalability of this intervention across the broader health system.

Emotional well-being and HbA1c following the implementation of the Diabetes Psychosocial Assessment Tool (DPAT) in young adults with type 1 diabetes (T1DM): An observational study.

AIMS: This observational study evaluated the implementation of the Diabetes Psychosocial Assessment Tool (DPAT), assessing emotional well-being of young adults with type 1 diabetes (T1DM) and the clinical congruency between DPAT-recommended and specialist-led referrals. METHODS: Young adults with T1DM attending the clinic completed the DPAT on two occasions. The DPAT includes the PAID (diabetes distress), PHQ-4 (depression/anxiety) and WHO-5 (general well-being), a diabetes health audit and a referral pathway to (allied) health professionals. Demographic and clinical information was retrieved from medical records. Data was analyzed using descriptive statistics and generalized estimating equations. RESULTS: 115 people with T1DM, aged 16-25 years, were included in the analysis. Symptoms of moderate-severe diabetes distress were present in 29 (25%) participants, symptoms of depression/anxiety and impaired well-being in 21 (19%) and 26 (23%) participants, respectively. The odds of depression/anxiety symptoms was lower at the second timepoint compared to the first timepoint (OR 0.55, 95% CI 0.32-0.96, p = 0.03). The odds of moderate-severe diabetes distress tended to be lower. No change was observed in general well-being or HbA1c. There was moderate concordance between DPAT and clinician referrals to psychologists (81%) and dieticians (70%). CONCLUSIONS: Using the DPAT facilitates the conversation about emotional well-being during routine consultation and follow-up.

'It's about developing a trustful relationship': A Realist Evaluation of midwives' relational competencies and confidence in a Danish antenatal psychosocial assessment programme.

OBJECTIVE: to explore how contextual conditions influence midwives' relational competencies, ability and confidence to undertake psychosocial assessment of pregnant women and their partners during the first antenatal consultation that identifies expectant parents in vulnerable positions. DESIGN: a realist evaluation carried out through three phases: 1) development 2) testing and 3) refinement of programme theories. Data was generated through realist interviews and observations. SETTING: nine community-based and hospital-based midwife clinics in the North Region of Denmark. INTERVENTION: a dialogue-based psychosocial assessment programme in the the North Region of Denmark was evaluated. PARTICIPANTS AND DATA: 15 midwives were interviewed and 16 observations of midwives undertaking psychosocial assessment during the first antenatal consultation were conducted. FINDINGS: contextual conditions at multiple levels which supported midwives' relational competencies, autonomy and the power of peer reflection-and thus facilitation of a woman-centred approach and trust-were identified, i.e., being experienced, having interest, organisational prioritisation of peer reflection and flexibility. Where midwives lacked experience, competency development regarding psychosocial assessment, opportunities for peer reflection and autonomy to individualise care for expectant parents in vulnerable positions, the approach to assessment tended to become institution-centred which caused a distant dialogue and instrumental assessment which potentially harmed the midwife-woman/couple relationship. CONCLUSION: midwives' ability and confidence to undertake psychosocial assessment were affected by whether individual and organisational contextual conditions empowered them to assess and care for expectant parents within a philosophy of woman-centred care. Accordingly, development of trustful midwife-woman/couple relationships - which is essential for disclosure - was achievable. These conditions become fundamental for securing quality of antenatal care for expectant parents in vulnerable positions.

Live Donor Assessment Tool (LDAT): Reliability and Validity of the German Version in Living Kidney Donor Candidates.

BACKGROUND: The Live Donor Assessment Tool (LDAT) is a semi-structured psychosocial assessment tool for evaluating potential organ donors. It enables standardization of the psychosocial evaluation across institutions and allows the quantification of the evaluation result. OBJECTIVE: To evaluate the validity and reliability of the German version of the LDAT in living kidney donors. METHODS: We assessed the internal consistency and convergent validity (using known groups) of the German version of the LDAT in donor candidates who were evaluated at Hannover Medical School from May 2017 to December 2021. RESULTS: One hundred fifty-two donor candidates were evaluated. The mean age was 50.9 (standard deviation, 12.0), 99 were female (65.1%) and 53 (34.9%) were male candidates. LDAT scores ranged from 39 to 78 (possible maximum score = 82). The mean and median LDAT scores in the entire sample were 69 (standard deviation, 6.4) and 71 (95% confidence interval, 68; 70), respectively. The LDAT items demonstrated good internal consistency (α = 0.737). LDAT scores were significantly lower in high and moderate risk donors compared to a low/no risk group as determined by clinical evaluation. We found a significant positive association of the LDAT total score with age and a negative correlation with levels of depression and anxiety. The best cutoff score in our sample was 66.5 with an area under the curve of 93%. CONCLUSIONS: The German version of the LDAT was found to be a reliable and valid tool, which seems suitable to support psychosocial donor evaluation.

Measuring the Optimal Time Interval Between Arrival and First Mental Health Evaluation's for Refugees in Québec: A Scoping Review.

To map the state of the existing literature to identify the optimal time frame between the arrival of refugees in a host country and psychosocial assessments. We conducted scoping review using the method of Arksey and O'Malley (2005). A systematic search of 5 databases including PubMed, Psycinfo (OVID), PsycINFO BD APA, Scopus and Web of Sciences) and grey literature identified 2698 references. Thirteen studies published between 2010 and 2021 were considered eligible. A data extraction grid was designed and tested by the research team. It is not so ease to identify the most appropriate time interval to assess the mental health of newly settled refugees. All the studies selected agree on the need to carry out an initial assessment when refugees arrive in their host country. Several authors agree on the need to carry out screening at least twice during the resettlement period. However, what is less clear is the best time to perform the second screening. This scoping review mainly helped in highlighting the lack of probing data on the mental health indicators focused on during the assessment and on the optimal timeline for the assessment of refugees. Further research is needed to determine whether developmental and psychological screening is beneficial, the right time to perform the screening, and the most appropriate collection instruments and interventions.

Racial and ethnic disparities in psychosocial evaluation and liver transplant waitlisting.

Health disparities have been well-described in all stages of the liver transplantation (LT) process. Using data from psychosocial evaluations and the Stanford Integrated Psychosocial Assessment, our objective was to investigate potential racial and ethnic inequities in overall LT waitlisting and not waitlisting for medical or psychosocial reasons. In a cohort of 2271 candidates evaluated for LT from 2014 to 2021 and with 1-8 years of follow-up, no significant associations were noted between race/ethnicity and overall waitlisting and not waitlisting for medical reasons. However, compared with White race, Black race (odds ratio [OR], 1.65; 95% confidence interval [CI], 1.07-2.56) and Hispanic/Latinx ethnicity (OR, 2.10; 95% CI, 1.16-3.78) were associated with not waitlisting for psychosocial reasons. After adjusting for sociodemographic variables, the relationship persisted in both populations: Black (OR, 1.95; 95% CI, 1.12-3.38) and Hispanic/Latinx (OR, 2.29; 95% CI, 1.08-4.86) (reference group, White). High-risk Stanford Integrated Psychosocial Assessment scores were more prevalent in Black and Hispanic/Latinx patients, likely reflecting upstream factors and structural racism. Health systems and LT centers should design programs to combat these disparities and improve equity in access to LT.

Adaptation and pilot implementation of the Psychosocial Assessment Tool for Autism Spectrum Disorders (PAT-ASD).

Recognizing the multifaceted and chronic demands on families of children with Autism Spectrum Disorder (ASD) and challenges in providing care matched to need, we adapted the Psychosocial Assessment Tool (PAT), a brief caregiver-report screener of family psychosocial risk, for this population. Study methods included literature review, focus groups with providers, and feedback from caregivers. The PAT-ASD is consistent with the original PAT, with new items reflecting core behavioral manifestations of ASD and parent and family challenges associated with chronicity. The PAT-ASD was implemented in a four-month pilot and was completed online by 59% of families. Although further testing of its validity is necessary, the PAT-ASD is a promising means of assessing family psychosocial risk for families of children with ASD.

Teaching SSHADESS Versus HEADSS to Medical Students: An Association With Improved Communication Skills and Increased Psychosocial Factor Assessments.

OBJECTIVE: The most recent Bright Futures edition describes both the HEADSS (Home, Education, Drugs, Sexuality, Safety) and the strength-based SSHADESS (Strengths, School, Home, Activities, Drugs, Emotions, Sexuality, Safety) frameworks for conducting an adolescent psychosocial history. We found limited research comparing the effectiveness of these 2 frameworks. Our study objective was to examine whether teaching medical students SSHADESS versus HEADSS is associated with increased communication skills and/or completion of the psychosocial assessment. METHODS: In this retrospective cohort study of pediatric clerkship students at New York University Grossman School of Medicine, we collected data from observer (faculty, fellow, and resident) and standardized patient (SP) assessments during Objective Structured Clinical Examinations. Primary outcomes were observer and SP-rated usage of communication skills. Secondary outcomes were observer-rated assessment of 6 psychosocial factors. Our predictor variable was whether students were taught HEADSS (11/2015-10/2016) or SSHADESS (11/2016-10/2017). We used Fisher's exact tests and then logistic regressions to adjust for pediatrics clerkship timing and baseline communication skills. RESULTS: About 200 students were assessed (n = 97 HEADSS cohort, n = 103 SSHADESS cohort). In adjusted analyses of observer scores, the SSHADESS cohort was more likely to use all communication skills (adjusted odds ratio [aOR] 3.2, 95% confidence interval [CI] 1.7-6.3]) and assess all psychosocial factors (aOR 1.9, 95% CI 1.01-3.4). There was no significant difference in SP communication scores. DISCUSSION: Teaching SSHADESS was associated with higher observer-rated communication skills scores and improved completeness in assessment of psychosocial factors. Future work should examine the efficacy of SSHADESS through workplace-based assessments and 360 degree assessments from adolescent patients.

Antenatal depression screening and psychosocial assessment in an Australian private hospital: An evaluation.

BACKGROUND: Universal mental health screening and psychosocial assessment during pregnancy have been recommended as best practice, but uptake of universal programs in the private hospital system has been slow. AIM: The aim of this study was to evaluate the Pre-admission Midwife Appointment Program (PMAP), an antenatal mental health screening program at the Mater Hospital, Sydney. MATERIALS AND METHODS: In this mixed-methods design study, PMAP interview data were collected for a consecutive series of 485 women who attended the PMAP during a 10-month period. Women also completed two postnatal telephone interviews (10 weeks and 9 months postpartum). The interviews involved depression screening and questions about the program. RESULTS: Of the 485 participants, 4.1% screened positive for depression on the Edinburgh Postnatal Depression Scale. In total, 19% were identified as currently suffering from, or at risk of developing, perinatal mental health issues; referrals to support services were provided for the 13% who were not already linked in with appropriate supports. All women displayed a decrease in depressive symptom severity from pregnancy to 10 weeks and 9 months postpartum. The PMAP was viewed positively by consumers, with >93% viewing the program as helpful and >98% saying that they would recommend the program to others. Additional program benefits identified included opportunities to gain practical information and prepare for motherhood and to think/reflect on their emotional well-being. CONCLUSIONS: Given the observed rates of psychosocial risk among this sample, related referral opportunities and positive consumer feedback, we recommend other Australian private hospitals consider implementing PMAP or similar programs.

Preliminary Validation of the Psychosocial Assessment Tool in the Neonatal Intensive Care Unit.

OBJECTIVE: Research suggests families whose infants are admitted to the Neonatal Intensive Care Unit (NICU) experience elevated distress and may have pre-existing risk factors for maladjustment. This study sought to validate the newly developed Psychosocial Assessment Tool (PAT-NICU/Cardiac Intensive Care Unit [CICU]), a comprehensive screening measure for family psychosocial risk in the NICU. METHODS: The sample included 171 mothers, who completed the PAT-NICU/CICU and other related measures within 2 weeks of their infant's NICU admission at a level 4 unit within a large pediatric hospital. PAT-NICU/CICU scores were compared to a companion risk survey completed by NICU social workers. Test-retest reliability was assessed through repeated measures at 2-month follow-up. RESULTS: Analyses suggest the PAT-NICU/CICU is effective in classifying psychosocial risk. This is supported by statistically significant correlations between the PAT-NICU/CICU and validated measures, in addition to elevated scores on concurrent measures by risk classification. Internal consistency, test-retest reliability, and acceptability for the PAT-NICU/CICU were satisfactory. CONCLUSIONS: This preliminary study demonstrates the validity, reliability, and acceptability of the PAT-NICU/CICU as a psychosocial screening tool to aid identification of families who may benefit from supportive services during NICU admission. This new measure is a more comprehensive tool that assesses a wide variety of risk factors and stress responses. However, future studies of this measure are needed with more diverse samples. Prompt screening of NICU parents may facilitate earlier linkage with appropriate levels of resources or intervention. This research is crucial in improving risk assessment and psychosocial care for families in the NICU.

Impact of psychosocial factors on medication level variability index and outcomes in pediatric liver transplant recipients.

BACKGROUND: Caregivers play an important role in maintaining a functioning graft after pediatric liver transplantation. Therefore, the psychosocial factors of both patients and caregivers can have a critical impact on transplant outcomes. Appropriate assessment and recognition of these factors pre-transplantation may allow transplant teams to better define the needs of pediatric organ recipients and develop specific countermeasures, which may then contribute toward improving transplant outcomes. METHODS: We studied 136 pediatric LT recipients followed at Texas Children's Hospital. Licensed social workers conducted comprehensive pre-transplant assessments on each patient, consisting of 22 psychosocial variables that were thought to impact adherence, which were reviewed during our study period. Non-adherence was determined using the MLVI for up to 4 years after transplantation. Biopsy-confirmed rejection episodes were assessed in the first 3 years after liver transplantation. RESULTS: Factors significantly associated with non-adherence (defined as MLVI >2) included parental age and parental education level at assessment, type of insurance, and household income. The number of ACR episodes trended higher in patients with non-adherence, and these patients had a higher number of moderate to severe rejection episodes but this trend was not statistically significant. CONCLUSIONS: Psychosocial characteristics such as parental age, education level, insurance, and household income may contribute significantly to suboptimal adherence to medications after transplantation. Identification of these psychosocial factors and early intervention is essential to the success and equitable care of our pediatric LT recipients.

Efficacy, tolerance and acceptability of pulsed dye laser on facial and neckline telangiectasias in systemic scleroderma: a prospective open-label monocentric study in 21 patients.

Facial and neckline telangiectasias have an underestimated yet important impact on quality of life of patients with systemic scleroderma (SSc). This monocentric, prospective, open-label, intra-patient comparative study was conducted in 21 consecutive patients with SSc. Patients underwent 4 sessions of PDL 8 weeks apart. A final quadruple assessment was performed by several raters 2 months after the last session, based on the following criteria: change in telangiectasia number; subjective improvement score (LINKERT scale); impact on the quality of life (QoL; SKINDEX score); visual analog pain scale; adverse effects (AEs), including treatment discontinuation for PDL-induced purpura and patient satisfaction. The mean telangiectasia number decreased by 5 (32%) at the end of the protocol. Eighteen patients (85.7%) reported an improvement or a strong improvement, versus 73.81% for the expert committee. Immediate session pain (mean = 3.4/10) was slightly less than overall pain (mean = 4.6/10). Ten patients (47%) experienced at least one AE (oozing/crusts, edema, epidermal blistering), including PDL-induced purpura in 3 patients (14%). AEs were mostly transient (<1 week) and mild (CTCAE grade 1). All QoL parameters improved after treatment, and 85% of patients were satisfied.

Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy.

This study addresses the social relevance of low-prevalence childhood diseases and reports the process of generation and validation of a tool to assess the social impact on the direct family environment and the social context of reference. The aim of the process of construction and validation of this instrument is to provide the field with a tool with the capacity to shed light on the social consequences of suffering from a low-prevalence disease, specifically those comorbid with treatment-resistant epileptic seizures of childhood origin. The instrument here presented and called CRESIA (acronym derived from Childhood Rare Epilepsy Social Impact Assessment) provides valuable information on six specific areas framing health, economic, psychological, social, and child-related stressors, as well as family. CRESIA represents a valid and reliable instrument for family members or primary caregivers of children and adolescents with childhood rare epilepsy.