Psychosocial Burden Research Articles

Comparison of the Efficacy of Clascoterone, Trifarotene, and Tazarotene for the Treatment of Acne: A Systematic Literature Review and Meta-Analysis.

Acne vulgaris, a chronic inflammatory condition, is associated with significant physical and psychosocial burden. Since 2019, three new topical agents for acne vulgaris have been approved in the USA and Canada. We performed a systematic review and meta-analysis to compare the efficacy between twice-daily clascoterone cream 1%, once-daily trifarotene 0.005% cream, and once-daily tazarotene 0.045% lotion for acne treatment. Randomized controlled trials (RCTs) comparing clascoterone, trifarotene, or tazarotene with vehicle in patients with moderate-to-severe acne were identified from a systematic literature review and included in a meta-analysis. Primary outcomes were percentage reduction in inflammatory and noninflammatory lesion count (ILC and NILC, respectively) and treatment success rate (≥ 2-grade improvement in Investigator's Global Assessment or Evaluator's Global Severity Score and a rating of clear or almost clear) at week 12. DerSimonian and Laird random-effects models with the inverse variance method were used to calculate the mean difference (MD) for percentage reduction in ILC and NILC, and odds ratios (ORs) for the rate of treatment success. Six Phase 3 RCTs were included in the meta-analysis. The analyses showed robust differences favoring the interventions for ILC (MD: - 11.5; 95% confidence interval [CI]: - 14.39, - 8.62), NILC (MD: - 12.25; 95% CI: - 15.21, - 9.29), and treatment success rate (OR: 2.14; 95% CI: 1.81, 2.53). No differences were observed between clascoterone, trifarotene, and tazarotene for ILC (MD: - 12.8, - 11.2, and - 10.1, respectively), NILC (MD: - 11.6, - 13.9, and - 12.8, respectively), or treatment success rate (OR: 2.9, 1.9, and 2.1, respectively (all P > 0.05). No significant differences in efficacy were observed between clascoterone, trifarotene, and tazarotene after 12weeks of treatment in patients with moderate-to-severe acne. Differences in application frequency and safety profile should also be taken into consideration when making treatment decisions.

Melasma: A Step-by-Step Approach Towards a Multimodal Combination Therapy.

Melasma is a common challenge in the field of pigmentary skin disorders, exerting a significant emotional and psychosocial burden on patients. The persistent and recurring nature of melasma complicates its management in routine clinical practice. This comprehensive review outlines a stepwise, practical approach encompassing diagnostic, preventive and therapeutic strategies for the management of melasma. A thorough exploration of aggravating and exacerbating factors, including sun exposure, hormonal imbalances, photosensitizing medication and cosmetics, is essential for a holistic assessment of the disease. With an emphasis on consistent and effective photoprotection, initial topical treatment modalities target the melanin production and/or the transfer of melanosomes to keratinocytes. Topical tyrosine inhibitors emerge as the first choice for reducing and preventing hyperpigmentation, with compounds such as thiamidol or tranexamic acid (TXA) being preferred for their safety profile over hydroquinone (HQ), kojic acid and arbutin. Combination with chemical peels can further enhance the therapeutic efficacy, even in cases with resistant melasma. In more severe cases, laser- and light-based interventions may be considered, but with the caveat of the likelihood of recurrence within 3-6 months. Assisted TXA delivery, via either fractional non-ablative laser or microneedling techniques, can further improve clinical outcomes. In conclusion, an optimal melasma management strategy is a multimodal approach, which includes effective photoprotection and a mix of different topical treatments targeting melanin synthesis, the anti-inflammatory environment, senescence and vascularity. Complementary procedures, such as chemical peels, and laser, light-based or microneedling procedures, with or without TXA, can further expedite melanin clearance in more severely affected instances. Individual discussions with patients regarding treatment expectations, recurrence likelihood and potential side effects are paramount to a comprehensive and successful therapeutic journey.

Punch biopsies in tattooed skin: Complications and patient‐reported outcomes

AbstractBackgroundDespite the popularity and usage of tattoos in modern society, various complications can occur such as allergic tattoo reactions, infections, tattoo removal complications and chronic granulomatous inflammatory tattoo reactions such as sarcoidosis. Histopathology of skin biopsies in tattoos is crucial in the diagnostic process of complications. As tattoos are frequently obtained for cosmetic reasons, cosmetic consequences of a skin biopsy in a tattoo are important. Remarkably, no studies have been performed regarding the consequences and expected outcome of taking a punch biopsy of tattooed skin.ObjectivesThe objective of this study is to report on the possible complications and patient‐reported cosmetic outcomes after punch biopsies in tattooed skin. Specifically, this study aims to assess the impact on appearance, symptoms and psychosocial burden of biopsies in tattooed skin, using the SCAR‐Q.MethodsPatients who underwent a punch biopsy of tattooed skin at the Tattoo Clinic in the Alrijne Hospital between 2021 and 2023 were included. To evaluate patient satisfaction of the biopsy scar the SCAR‐Q and a questionnaire regarding the recovery of the punch biopsy was used.ResultsThe final cohort consisted of 50 patients. Across all scales, the median scores on the SCAR‐Q questionnaire were consistent with the maximum score. Patients scored significantly better on the appearance scale when the biopsy was taken longer than 8 months ago. Two‐third of the patients reported no postbiopsy symptoms, with the remainder experiencing itch, pain or redness, which typically resolved within 10 days (88%). Remarkably, 42% of the patients reported the biopsy scar was not visible on the skin anymore. Scars on the lower extremities and trunk were significantly more frequently visible, as well as scars among patients aged 40 and above.ConclusionsThis study demonstrates that the cosmetic and psychological impact of punch biopsies in tattooed skin is minimal and the recovery is fast with minimal symptoms. For this reason, biopsies of tattooed skin should not be avoided in the diagnostic process.

Psychological Care for People with Inflammatory Bowel Diseases: Exploring Consumers’ Perspectives to Inform Future Service Co-design

BackgroundThere is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease.AimsThis study qualitatively explored the views of people living with IBD to help inform future co-design of services that better meet the psychological needs of consumers.MethodsAdults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional qualitative content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies.ResultsThirty-one participants took part in the study: 10 focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: People-Centered Healthcare (commented on by 90% of participants), Education and Preparation (83%), Social Connection (83%), Psychological Input (93%), and Accessible Services (97%). Results were summarized in a set of proposed clinical guidelines.ConclusionsThe findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements.Graphical

Risk perception, well-being, depression and anxiety in children and adolescents with rheumatic diseases during the COVID-19 pandemic - results from the prospective multicenter KICK-COVID study in Germany

ObjectiveTo investigate the psychosocial burden in children and adolescents with juvenile rheumatic diseases during the COVID-19 pandemic.MethodsAs part of the multicentre observational KICK-COVID study linked to the National Pediatric Rheumatology Database, adolescents < 21 years and parents of children < 12 years with rheumatic diseases answered questions on perceptions of health risk (PHR) due to SARS-CoV2, stress, well-being (WHO-5) and symptoms of depression (PHQ-9) and anxiety (GAD-7). Data were collected at routine visits from June to December 2021 and assessed for association with demographic and clinical parameters, treatment and patient-reported outcomes by multivariable regression analyses.ResultsData from 1356 individuals (69% female, 50% adolescents) were included. Median PHR on a numeric rating scale (NRS, 0–10) was 4 (IQR 2–6), median perceived stress was 3 (IQR 1–6). Adolescents reported a worse well-being with a significantly lower median WHO-5-score (60, IQR 40–76) than parents reported for their children < 12 years (80, IQR 68–84). Moderate to severe symptoms of depression and anxiety were reported by 14.3% and 12.3% of the adolescents, respectively. PHR was significantly higher in patients with systemic lupus erythematosus, methotrexate or biologic disease-modifying anti-rheumatic drug therapy than in patients without these characteristics, whereas lower WHO-5 or higher PHQ-9 or GAD-7 scores were only associated with poorer patient-reported health status and physical functioning.ConclusionThe perception of health risk due to SARS-CoV2 infection was not paralleled by an impairment of mental health, which were, however, significantly correlated with self-rated health status and functional capacity, highlighting the importance of patient-reported outcome assessment.Trial registrationGerman Clinical Trials Register (DRKS), no. DRKS00027974. Registered on 27th of January 2022.

Four-year follow-up of psychiatric and psychosomatic profile in patients with Inflammatory Bowel Disease (IBD).

Psychological characterization of patients affected by Inflammatory Bowel Disease (IBD) focuses on comorbidity with psychiatric disorders, somatization or alexithymia. Whereas IBD patients had higher risk of stable anxiety and depression for many years after the diagnosis of the disease, there is a lack of studies reporting a comprehensive psychosomatic assessment addressing factors of disease vulnerability, also in the long-term. The objective of this investigation is to fill this gap in the current literature. The aims were thus to assess: a) changes between baseline and a 4-year follow-up in psychiatric diagnoses (SCID), psychosomatic syndromes (DCPR), psychological well-being (PWB-I), lifestyle, gastrointestinal symptoms related to IBD and Irritable Bowel Syndrome (IBS)-like symptoms b) stability of psychiatric and psychosomatic syndromes at 4-year follow-up. A total of 111 IBD outpatients were enrolled; 59.5% of them participated at the follow-up. A comprehensive assessment, including both interviews and self-report questionnaires, was provided at baseline and follow-up. Results showed increased psychiatric diagnoses, physical activity, consumption of vegetables and IBS-like symptoms at follow-up. Additionally, whereas psychiatric diagnoses were no longer present and new psychopathological pictures ensued at follow-up, more than half of the sample maintained psychosomatic syndromes (particularly allostatic overload, type A behavior, demoralization) from baseline to follow-up. Long-term presence/persistence of such psychosocial burden indicates the need for integrating a comprehensive psychosomatic evaluation beyond traditional psychiatric nosography in IBD patients. Moreover, since psychosomatic syndromes represent vulnerability factors of diseases, further studies should target subgroups of patients presenting with persistent psychosomatic syndromes and worse course of the disease.

“Like not having an arm”: a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic

PurposeVisitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives.MethodsSixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021.ResultsVisitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients’ negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes.ConclusionsOur data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

Health economic evaluation of blended collaborative care for older multimorbid heart failure patients: study protocol

BackgroundIntegrated care, in particular the ‘Blended Collaborative Care (BCC)’ strategy, may have the potential to improve health-related quality of life (HRQoL) in multimorbid patients with heart failure (HF) and psychosocial burden at no or low additional cost. The ESCAPE trial is a randomised controlled trial for the evaluation of a BCC approach in five European countries. For the economic evaluation of alongside this trial, the four main objectives were: (i) to document the costs of delivering the intervention, (ii) to assess the running costs across study sites, (iii) to evaluate short-term cost-effectiveness and cost-utility compared to providers’ usual care, and (iv) to examine the budgetary implications.MethodsThe trial-based economic analyses will include cross-country cost-effectiveness and cost-utility assessments from a payer perspective. The cost-utility analysis will calculate quality-adjusted life years (QALYs) using the EQ-5D-5L and national value sets. Cost-effectiveness will include the cost per hospital admission avoided and the cost per depression-free days (DFD). Resource use will be measured from different sources, including electronic medical health records, standardised questionnaires, patient receipts and a care manager survey. Uncertainty will be addressed using bootstrapping.DiscussionThe various methods and approaches used for data acquisition should provide insights into the potential benefits and cost-effectiveness of a BCC intervention. Providing the economic evaluation of ESCAPE will contribute to a country-based structural and organisational planning of BCC (e.g., the number of patients that may benefit, how many care managers are needed). Improved care is expected to enhance health-related quality of life at little or no extra cost.Trial registrationThe study follows CHEERS2022 and is registered at the German Clinical Trials Register (DRKS00025120).

Disparities in prevalence and treatment of diabetes, cardiovascular and chronic kidney diseases – Recommendations from the taskforce of the guideline workshop

There is a mounting clinical, psychosocial, and socioeconomic burden worldwide as the prevalence of diabetes, cardiovascular disease (CVD), and chronic kidney disease (CKD) continues to rise. Despite the introduction of therapeutic interventions with demonstrated efficacy to prevent the development or progression of these common chronic diseases, many individuals have limited access to these innovations due to their race/ethnicity, and/or socioeconomic status (SES). However, practical guidance to providers and healthcare systems for addressing these disparities is often lacking. In this article, we review the prevalence and impact of healthcare disparities derived from the above-mentioned chronic conditions and present broad-based recommendations for improving access to quality care and health outcomes within the most vulnerable populations.

Intimate Partner Violence among Mothers of Children with Sickle Cell Disease: A Retrospective Cohort Analysis of 2018 Nigeria DHS Data

Background: The 2018 Nigeria Demographic and Health Survey (NDHS) collected data on the experience of intimate partner violence (IPV) among women aged 15-49 years and the genotype of their children aged 6-59 months. We performed a retrospective cohort analysis to ascertain if having a child with sickle cell disease (SCD) predisposes women to IPV.&#x0D; Methods: Eighty-five mothers of children living with SCD were compared with 320 mothers of children living without SCD after matching for age, number of living children, religion, place of residence and wealth index. The prevalence rates of IPV and the relative risks (RRs) of experiencing controlling behaviour, emotional, physical, sexual and any form of IPV in the 12 months preceding the survey were calculated.&#x0D; Results: Compared to mothers of children without SCD, mothers of children living with SCD were not at greater risk of experiencing controlling behaviour (RR=0.90, 95% CI: 0.54–1.49), emotional violence (RR=1.09; 95% CI=0.78–1.53), physical violence (RR=0.75, 95% CI: 0.38–1.48), sexual violence (RR=0.89, 95% CI: 0.31– 2.56) or any form of IPV (RR=0.98, 95% CI: 0.71–1.37).&#x0D; Conclusion: The study did not find sufficient evidence for increased risk of IPV among mothers of children living with SCD, despite the additional health, psychosocial and financial burdens associated with raising a child with the disease. Further research is needed to address the limitations of this study and to carefully investigate the relationship between having a child with SCD and the experience of IPV among women.

Wigs and Alopecia Areata: Psychosocial Impact and Economic Considerations

Alopecia areata (AA) presents a challenging and unpredictable condition associated with substantial psychosocial and financial burdens. A chronic, relapsing form of non-scarring hair loss, it affects approximately 0.1–0.2% of the population worldwide with a lifetime risk of 1.0% to 2.1%. The psychosocial implications of AA, including its association with depression, anxiety, social phobia, employment disruption, and relationship challenges are well described. Significant economic costs of AA include those of healthcare, lost income, transportation, psychotherapy, and cosmetic accessories (wigs and hairpieces). However, wigs and hairpieces can contribute to enhanced self-esteem, confidence, and overall quality of life (QOL) in AA patients; these positive outcomes correlating with satisfaction in appearance. This article explores the role of wigs in addressing the aesthetic and emotional impact of AA, emphasizing their importance as potential coping mechanisms for individuals facing hair loss whilst also acknowledging possible barriers to their use. Different types of wigs and hairpieces, their respective advantages and disadvantages, and methods of attachment are thoroughly discussed, providing a comprehensive overview for both patients and healthcare professionals. Considering the economic impact of AA, this article explores the cost of wigs in Australia and available financial assistance programs. Wigs can play a pivotal role in rapidly addressing the multifaceted challenges posed by AA, offering time for psychosocial adaptation and delayed response to medical therapies. This review aims to provide valuable insights to inform evidence-based, practical, and personalized counselling of patients with AA and enable shared decision making about the utility of wigs and other cosmetic interventions for hair loss. Further research is warranted to explore differences in the optimal utilization of wigs between diverse sub-populations with AA.

Dysmorphic physical appearance and psychosocial burdens in Klippel-Feil condition

IntroductionKlippel-Feil abnormality (KFA) is an association of bone defects characterized by a triad: fusion of the cervical vertebrae and consequent short neck, low hairline and a limited motion in the neck. KFA may be a feature of another disorder, such as MURCS association. Familial mutations in the GDF6 (KFS1 8q22), MEOX1 (KFS2 17q21), GDF3 (KFS3 12p13) and MYO18B (KFS4 22q11) genes cause inherited KFA.ObjectivesThe aim of this study was to report dysmorphic features and psychological burdens in two sisters with Klippel-Feil condition.MethodsTwo sisters with amenorrhea and dysmorphic clinical features were examined at our genetic counselling. Assessment of dysmorphic and behavioral features and karyotyping using RHG banding were performed.Results Familial history revealed consanguineous parents and seven other healthy sisters. Physical examination shown typical triad of KFA. Karyotyping showed 46,XX formula in both patients. The first 22-year-old sister had body asymmetry with size difference between the two sides at the level of bones, pectus excavatum of the sternum, an ascent of the left scapula, scoliosis, dental position abnormalities and facial dysmorphism. The second 28-year-old sister had size difference between the two legs and scoliosis, vitiligo and facial dysmorphism. Anxious and depressed, the two sisters had normal learning abilities but shared many personal psychological concerns regarding their physical appearance and their amenorrhea. They were also exposed to significant discrimination and stigma making them feel excluded and ignored because of their visible difference.Conclusions Physical appearance has a profound impact on a person’s life. To our knowledge, there is no reports that describe specific psychological burdens of KFA. Self-esteem, body image, and quality of life is negatively impacted in the case of dysmorphic physical appearance, always associated to social discrimination. Patients with KFA should be assessed not only for associated congenital defects but also for psychological distresses.Disclosure of InterestNone Declared

Economics of Emergency Department Visits by Patients With Inflammatory Bowel Disease: A Real-World Analysis.

Inflammatory bowel disease (IBD) is associated with significant psychosocial, economic, and physical burden on patients. IBD care in the United States results in significant healthcare expenditure with recurring emergency department (ED) care and hospital admissions. Despite advances in therapy and improved access to specialty care, there is still room for improvement in cost-efficient care. Specialty medical homes and interdisciplinary care models have emerged as ways to improve medical care, patient outcomes, and quality of life, as well as improve the impact of healthcare costs. There is limited real-world data on cost in the United States, with many articles citing cost estimates from models. We analyzed real-world data from our tertiary care center with a focus on recurrent ED visits by IBD patients. Descriptive statistics were used for a cost analysis of multiple ED visits by IBD patients. Patients with ≥4 visits to the ED in a 6-month period were described as SuperUsers and were included in a separate analysis. The cost of hospitalization was also included. Total cost associated with all ED visits from SuperUsers were $72999.57 with an average of $6636.32 per patient. When the patients were admitted, the total cost of ED visits and hospitalizations was $721461.52, with an average of $65587.41 per patient. ED utilization by IBD patients with or without hospitalization is expensive and is typically driven by a cohort of SuperUsers. More work needs to be done to improve cost-effectiveness in IBD care, including reducing the frequency of ED visits.

Effects of medication management in geriatric patients who have fallen: results of the EMMA mixed-methods study.

comprehensive medication management (CMM) can reduce medication-related risks of falling. However, knowledge about inter-individual treatment effects and patient-related barriers remains scarce. to gain in-depth insights into how geriatric patients who have fallen view their medication-related risks of falling and to identify effects and barriers of a CMM in preventing falls. complementary mixed-methods pre-post study, based on an embedded quasi-experimental model. geriatric fracture centre. qualitative, semi-structured interviews framed the CMM intervention, including a follow-up period of 12weeks. Interviews explored themes of falling, medication-related risks, post-discharge acceptability and sustainability of interventions using qualitative content analysis. Optimisation of pharmacotherapy was assessed via changes in the weighted and summated Medication Appropriateness Index (MAI) score, number of fall-risk-increasing drugs (FRID) and potentially inappropriate medications (PIM) according to the Fit fOR The Aged and PRISCUS lists using parametric testing. thirty community-dwelling patients aged ≥65years, taking ≥5 drugs and admitted after an injurious fall were recruited. The MAI was significantly reduced, but number of FRID and PIM remained largely unchanged. Many patients were open to medication reduction/discontinuation, but expressed fear when it came to their personal medication. Psychosocial issues and pain increased the number of indications. Safe alternatives for FRID were frequently not available. Psychosocial burden of living alone, fear, lack of supportive care and insomnia increased after discharge. as patients' individual attitudes towards trauma and medication were not predictable, an individual and longitudinal CMM is required. A standardised approach is not helpful in this population.

PSYCHOSOCIAL BURDEN OF PARENTS HAVING CHILDREN WITH HAEMOPHILIA IN NEPAL

Background: Parenting a child with haemophilia, a hereditary bleeding disorder, causes more stress than parenting a normal child. The main aim of this study was to find out the psychosocial burden faced by parents having children with haemophilia in Nepal. Methods: In this cross-sectional study, 76 parents having children with haemophilia were recruited from Nepal Haemophilia Society using a non-probability purposive sampling technique. The Zarit Burden Interview scale was used. Chi-square test and odds ratio at 95% confidence interval were used to assess an association between parents’ psychosocial burden with the parents and child-related variables using SPSS version 16. Results: A moderate level of psychosocial burden was prevalent among 60.5% of the parents. There was a significant association between parents’ psychosocial burden with parents’ education (p = 0.037), income (p = 0.03), type of Haemophilia among children (p = 0.03) and type of treatment received by children (p = 0.01). Further, the odds ratio predicted that psychosocial burden was 3.0 times higher (95% CI = 1.1 – 8.3, p = 0.04) among those parents with insufficient income and 4.2 times higher (95% CI = 1.3 – 13.4, p = 0.02) for the parents whose children were under factor VIII and associated treatment. Conclusions: Psychosocial burden, particularly of moderate intensity was higher in parents having children with haemophilia. Those parents with low education level, with less income and whose children are diagnosed with Haemophilia A and under factor VIII and associated treatment should be more considered in reducing their psychosocial burden.

A quantitative cross-sectional study of the burden of caring for patients with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex-associated epilepsy in Japan

IntroductionLennox-Gastaut syndrome (LGS), Dravet syndrome (DS), and tuberous sclerosis complex (TSC)-associated epilepsy are rare conditions associated with severe childhood-onset epilepsy. Caregivers play a critical role in the patients’ care and may experience significant psychosocial and socioeconomic burden. This cross-sectional study determined the burden of caring for patients with these rare epilepsy conditions in Japan. MethodsA quantitative online survey was used to assess patients’ and caregivers’ characteristics and the caregivers’ emotional state, among others. Several validated questionnaires were used: the Hospital Anxiety and Depression Scale (HADS; 0–21 score) assessed the caregivers’ emotional wellbeing, the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM; 0–100 score) assessed the health-related quality of life (HRQoL) of the caregivers and their families, and the Work Productivity and Activity Impairment General Health (WPAI:GH; 0–100 % score) questionnaire assessed work productivity. ResultsA total of 36 caregivers responded (median [interquartile range (IQR)] age 43.5 [39.5, 48.3] years; 33/36 [92 %] female; 13/36 [36 %] working part-time and 13/36 [36 %] not working). Participants cared for 7/36 (19 %), 19/36 (53 %), and 10/36 (28 %) patients with LGS, DS, and TSC, respectively (median [IQR] age, 11.0 [6.8, 16.3] years; age at first seizure, 0 [0, 0] years). Patients received a median (IQR) of 4 (3, 5) treatment drug types. Patients experienced median (IQR) 3.0 (0, 21.0) epileptic seizures in the previous week; 28/36 (78 %) had severe intellectual disabilities, and 34/36 (94 %) had developmental delays. Caregivers reported stress (17/36 [47 %]), sleep problems (13/36 [36 %]), and anxiety (12/36 [33 %]). They spent a median (IQR) of 50.0 (17.5, 70.0) hours caregiving in the previous week, with 3.0 (1.0, 11.0) hours of seizure-specific care. Caregivers reported that their lives would be easier with a median (IQR) of 1.5 (0, 5.0) hours fewer per week caring for patients during/following seizures. Median HADS scores were 9.5 (‘suspected anxiety diagnosis’) and 7.5 (‘no depression’) for caregivers, and PedsQL FIM Total median score was 60.1, indicating HRQoL impairment for the caregiver and their family. WPAI:GH scores for paid workers indicated important work impairment. Higher caregiving hours (≥ 21 h vs. < 21 h in the previous week) resulted in higher caregiver burden as indicated by the HADS Total score (p = 0.0062) and PedsQL FIM Total score (p = 0.0007). ConclusionsCaregivers of patients with LGS, DS, or TSC in Japan experience a significant time burden, reduced HRQoL, and high level of work/activity impairment. Caregivers provide round-the-clock care to patients and rely on family and specialized caring services to help manage the increased caregiving time, which tends to be associated with greater emotional burden and HRQoL impact.

Uncovering the burden of hidradenitis suppurativa misdiagnosis and underdiagnosis: a machine learning approach.

Hidradenitis suppurativa (HS) is a chronic inflammatory follicular skin condition that is associated with significant psychosocial and economic burden and a diminished quality of life and work productivity. Accurate diagnosis of HS is challenging due to its unknown etiology, which can lead to underdiagnosis or misdiagnosis that results in increased patient and healthcare system burden. We applied machine learning (ML) to a medical and pharmacy claims database using data from 2000 through 2018 to develop a novel model to better understand HS underdiagnosis on a healthcare system level. The primary results demonstrated that high-performing models for predicting HS diagnosis can be constructed using claims data, with an area under the curve (AUC) of 81%-82% observed among the top-performing models. The results of the models developed in this study could be input into the development of an impact of inaction model that determines the cost implications of HS diagnosis and treatment delay to the healthcare system.

The mental health burden of food allergies: Insights from patients and their caregivers from the Food Allergy Research & Education (FARE) Patient Registry

BackgroundFood allergies impose a large psychosocial burden, including mental, emotional, and social aspects, on both patients and their caregivers. Patients, caregivers, and their families often experience anxiety, isolation, and fear around food allergies. ObjectiveTo assess the real-world mental health burden of food allergies, using the Food Allergy Research & Education (FARE) Patient Registry (NCT04653324). MethodsSelf-reported data from patients with food allergies, and their caregivers, were analyzed from the FARE Food Allergy History and Mental Health Concerns surveys. Odds ratios were also calculated as a measure of association between patient food allergy characteristics and the likelihood of having mental health concerns or a formal mental health diagnosis. ResultsThe FARE Patient Registry included 1680 patients/caregivers. Anxiety (54%) and panic (32%) were the most common emotions that patients reported as a result of eating the food that produced an allergic reaction. About two-thirds of patients reported mental health concerns related to food allergies (62%), including anxiety after an allergic reaction, anxiety about living with food allergies, and concerns about food avoidance. Caregivers also experienced fear for the safety of their children, and often sought mental health care to cope with worry related to caring for patients with food allergies. The likelihood of having food allergy-related mental health concerns was increased for patients experiencing more than 1 reaction per year (OR 1.68–1.90) and was lowered for patients having a formal mental health diagnosis (OR 0.43). Caregivers filling out the FARE survey for pediatric patients (OR 4.03) and experiencing food allergy-related mental health concerns (OR 2.36) were both significant predictors for having a formal mental health diagnosis. ConclusionOur study highlights a continuing unmet need for mental health screening and support as part of the management of patients with food allergies.

Addressing the psychosocial aspects of transition to adult care in patients with cystinosis.

Cystinosis is a rare autosomal-recessive lysosomal storage disease that progressively affects multiple organs beginning with the kidneys. Patients require lifelong multidisciplinary care for the management of kidney disease and progressive extra-renal manifestations, and thus, they are especially fragile and vulnerable during transition from pediatric to adult care. Previous documents have provided guidance to help the medical transition of these highly burdened patients. Patients and their families often experience great psychological distress and face significant social challenges; for these reasons, they often need help from psychologists, social workers, and other psychosocial professionals. Due to the rarity of the disease, most psychosocial professionals have no expertise in this disorder and require advice. To this end, a steering committee (SC) composed of six experts, including pediatric nephrologists, psychologists, and social workers with experience in the care for patients with cystinosis, have identified and addressed seven key questions related to psychosocial challenges of the disease and the burden of treatment. Ten additional international experts (the extended faculty, EF) were invited to answer these questions. Since robust evidence is lacking, as in many rare diseases, conclusions were based on collective agreement between members of the SC and the EF, and the consolidated answers were summarized into expert opinion statements. The present document contains information on the concerns and psychosocial burden of patients with cystinosis and of their caregivers, and provides practical advice for timely and appropriate support to facilitate the transition to adult care.

A Systematic Review of the Psychosocial Impact of Endometriosis before and after Treatment.

While endometriosis is a common gynecologic disease associated with infertility, the psychosocial impact of endometriosis has not been evaluated against various quality of life (QoL) instruments and compared with other chronic illnesses. We rigorously analyzed the psychosocial burden of endometriosis in adult women and compared standardized and validated QoL scores of women with and without endometriosis, before and following treatment, and against other chronic illnesses. We searched PubMed, PsychINFO Embase, and Cochrane Reviews and ClinicalTrials.gov from January 1990 to December 2022 for publications using a detailed list of search terms related to QoL, endometriosis, and questionnaires. Only English-language publications that evaluated the association between Endometriosis and QoL using standardized and validated questionnaires measured at baseline and following treatment were considered. Four reviewers first performed a title and abstract screening followed by full text-review to finalize included articles. QoL scores of women with endometriosis were measured at baseline and analyzed against women without endometriosis and women with endometriosis who had undergone treatment. Additionally, baseline endometriosis scores were assessed against the published QoL scores of populations with other chronic conditions. Assessment of risk of bias was performed in accordance with Cochrane and Newcastle-Ottawa Scale guidelines. A total of 30 articles were included in this review: 4 randomized trials and 26 observational studies. The diagnosis and experience of women with symptomatic endometriosis had an equal or worse QoL score than that of other chronic conditions including heart disease, diabetes, and breast cancer when compared using the 36-Item Short Form Survey and World Health Organization Quality of Life questionnaires. Evidence showed association between low QoL and infertility, sexual dysfunction, mental health struggles, physical pain, poor sleep and fatigue. QoL scores were lower at baseline compared to following treatment in the majority of these domains. Endometriosis is associated with significant psychosocial burden and impaired QoL scores across baseline measurements in comparison to controls and other chronic illnesses. Medical and surgical interventions significantly decreased experienced burdens and improved QoL of women with endometriosis.