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INTRODUCTION: Vitiligo is an autoimmune disease, causing skin depigmentation. Individuals with vitiligo incur substantial psychosocial burden and have expressed frustration with their treatments. Here, we describe the burden of vitiligo and opinions on what constitutes meaningful change among participants of two qualitative interview studies. METHODS: Qualitative interviews were conducted with a subgroup of adolescent and adult participants with vitiligo from two pivotal phase 3 clinical trials of ruxolitinib cream (Study 1) and a real-world panel (Study 2). Participants were asked about their disease burden, treatment goals, importance of facial/body improvement (treatment satisfaction: scale range 0-10), and meaningfulness of change (yes/no). RESULTS: A total of 36 participants from Study 1 and 23 from Study 2 were interviewed. In Study 1, the highest degree of impact was on reduced self-esteem (facial lesions, 62.5%; body lesions, 55.6%), social inhibition (facial lesions, 65.6%; body lesions, 61.1%), and sun sensitivity (facial lesions, 31.3%; body lesions, 55.6%). Most participants (83.3%) reported that facial improvement was equally (36.1%) or more important (47.2%) than body improvement, with mean treatment satisfaction of 8.1 and 6.9, respectively. Meaningful change was reported by 83.3% and 92.9% of participants with 50-74% and ≥ 75% improvement per the facial Vitiligo Area Scoring Index, respectively, and by 82.6% of participants with ≥ 25% improvement per the total Vitiligo Area Scoring Index per Study 1 outcomes at Week 24. In Study 2, most (82.6%) participants felt that the noticeability of their vitiligo affected their behavior. Nearly all (87.0%) said that an ideal treatment would repigment or return natural color to their facial skin; 56.5% considered ≥ 50% facial repigmentation to be the smallest meaningful improvement. CONCLUSIONS: Participants from both qualitative interviews expressed substantial psychosocial burden. Repigmentation in both facial and body vitiligo were important, with meaningful change determined to be ≥ 50% facial repigmentation and ≥ 25% body repigmentation.
Vitiligo is an autoimmune disease that causes white patches to appear on the skin, affecting about 2% of people worldwide. People with vitiligo often have poor quality of life due to their disease and frequently do not believe that treatments work. We explored how people with vitiligo felt about their disease, and asked what hopes they had for treatment. Individual telephone interviews were conducted with 36 adolescents and adults with vitiligo from two clinical studies (Study 1) and 23 adolescents and adults with vitiligo from a real-world panel (Study 2) in the USA and Canada. Those from Study 1 said that their vitiligo caused them to have low self-esteem and to feel lonely. Most said that it was as important or more important to restore color to white patches on their face (i.e., repigmentation) than the body. Most achieving repigmentation of more than 50% on the face or more than 25% on the body were pleased with their treatment. In Study 2, most people said that their disease affected their behavior, and nearly all said that completely restoring color to their facial skin (i.e., 100% repigmentation) was important. Over half said that the smallest change they thought was important was more than 50% facial repigmentation. In short, people with vitiligo in two interview studies said that their vitiligo affected their quality of life. Most people with vitiligo in these studies reported that it was important to repigment more than 50% on the face and more than 25% on the body.
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Newborn screening (NBS) is one of the most effective measures of secondary prevention. While the benefit of NBS on the clinical long-term outcomes of children with inherited metabolic diseases (IMD) has been demonstrated, the potential burden of families living with an early diagnosed and treated child with an IMD has not been thoroughly investigated. The aim of this longitudinal questionnaire-based study on 369 families living with a child with an IMD was to investigate the psychosocial and financial burden following a true-positive NBS. The reported psychosocial burden differed between children and their parents, and was associated with the child's age, diagnosis, and treatment. At younger ages, parent-reported burden was higher for the parents than for the individual child, while it increased for children and decreased for parents as the child grew older. Furthermore, psychosocial burden increased if the child required a strict dietary treatment and was at risk of metabolic decompensation. Regardless of diagnosis and treatment, the developmental delay of their child independently increased the parental psychosocial burden. Financial burden was reported by 24% of all families, and was higher in low-income families and in families whose children required dietary treatment. In conclusion, a substantial psychosocial and financial burden was revealed for children and their families after true-positive NBS. Since this burden is likely to have a negative impact on the long-term individual health benefits of NBS, this study underlines the importance of regularly assessing the psychosocial and financial needs of these families.
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BACKGROUND: Cancer patients with minor children but also their families suffer from significant psychological distress and comorbidity. Protective factors predicting successful coping are well known. Corresponding systematic interventions are rare and limited by access barriers. We developed a comprehensive family-centered intervention for cancer patients with at least one dependent minor. PATIENTS AND METHODS: Family-SCOUT represents a multicentric, prospective, interventional, and controlled study for families with parental cancer and their minor children. In the intervention group (IG), all family members were addressed using a care and case management approach for nine months. Families in the control group (CG) received standard of care. Participating parents were asked to complete the Hospital-Anxiety-Depression-Scale (HADS) questionnaire at enrolment (T0) and after 9 months (T2). The primary outcome was a clinically relevant reduction of distress in at least one parent per family, measured as minimal important difference (MID) of ≥1.6 in the HADS total score. The percentage of families achieving MID is compared between the IG and CG by exact Fisher's test, followed by multivariate confounder analyses. RESULTS: T0-questionnaire of at least one parent was available for 424 of 472 participating families, T2-questionnaire after 9 months was available for 331 families (IG n = 175, CG n = 156). At baseline, both parents showed high levels of distress (HADS total: sick parents IG: 18.7 ± 8.1; CG: 16.0 ± 7.2; healthy partners: IG: 19.1 ± 7.9; CG: 15.2 ± 7.7). The intervention was associated with a significant reduction in parental distress in the IG (MID 70.4% in at least one parent) compared with the CG (MID 55.8%; P = 0.008). Adjustment for group differences from specific confounders retained significance (P = 0.047). Bias from other confounders cannot be excluded. CONCLUSIONS: Parental cancer leads to a high psychosocial burden in affected families. Significant distress reduction can be achieved through an optimized and structured care approach directed at the family level such as family-SCOUT.
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Neoplasias , Padres , Humanos , Femenino , Masculino , Neoplasias/psicología , Neoplasias/terapia , Estudios Prospectivos , Niño , Adulto , Padres/psicología , Adaptación Psicológica , Encuestas y Cuestionarios , Estrés Psicológico/etiología , Adolescente , Preescolar , Persona de Mediana EdadRESUMEN
BACKGROUND: Paediatric oncology/haematology patients and their families are confronted with a life-threatening situation for which music therapy can be a cross-linguistic field of action. The creative act of making music together offers the possibility to strengthen competences and make conflicts tangible. Besides its complementing of evidence-based biomedical care, there is little research on the feasibility and efficacy of interactive music therapy including the diagnosed child and their significant others. METHODS: We conducted an assessor blind, prospective, multicentric feasibility randomized controlled trial (RCT) with subsequent intervention. Including overall 52 child-significant other dyads, INMUT investigates interaction-focused music therapy with cancer-affected children and their significant others (INMUT-KB; n = 21) compared to music therapy only with the child (MUT-K; n = 21) and a wait-list group (WLG; n = 10). The measurement points include the screening for a cancer diagnosis, psychometric baseline (pre-T1), initial assessment (T1/T2), music therapy sessions (T3-T9), final assessment (T10), final psychometric evaluation (post-T10), and 3-month follow-up (cat-T11). Feasibility and acceptability of the (1) research methodology, (2) intervention and (3) estimation of effect sizes will be assessed using qualitative and quantitative data. The proposed primary outcome includes the parent-child interaction (APCI), and the proposed secondary outcomes refer to subjective goal achievement (GAS), quality of life (KINDL), system-related functional level (EXIS), psychosocial stress (BAS), psychosomatic complaints (SCL-9k), and resources (WIRF). We plan to investigate the efficacy of INMUT-KB and MUT-K post-intervention (post-T10) within the RCT design and at 3-month follow-up (cat-T11). DISCUSSION: This study will provide insights into the feasibility of INMUT and the final sample needed for a confirmatory RCT. We will reflect on successfully implemented study procedures and, if necessary, provide recommendations for changes considering the design, procedures, measures, and statistical analyses. The discussion will conclude with an evaluation whether a confirmatory RCT is worth the investment of future resources, including the calculated number of child-significant other dyads needed based on the efficacy trends derived from this feasibility study. TRIAL REGISTRATION: ClinicalTrials.gov: NCT05534282; date of registration: June 23, 2022.
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Food Allergy (FA) is a growing global public health concern. In the United States alone, 8% of children and 11% of adults have a convincing FA (symptoms consistent with an IgE-mediated reaction to a specific allergen). Given the significant prevalence of this condition, the objective of this mini-review is to illustrate the many dimensions of life that are impacted among those with FA. Summarizing findings from a breadth of current literature, we present how FA affects social, psychological, and economic-related quality of life. With this informative review, we endeavor to bring increased awareness to these issues and help cultivate a better future for individuals with FA.
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BACKGROUND: With a prevalence of 0.5-2%, vitiligo is one of the most common skin disorders worldwide with loss of pigment. The skin disease has a disfiguring, often stigmatising character and is often associated with psychosocial distress. OBJECTIVE: To provide an overview of the psychosocial impairment, disease burden and resulting health care needs of patients with vitiligo. MATERIALS AND METHODS: Narrative review based on a literature search in PubMed for the years 1996-2022 on disease burden, quality of life and stigmatization is provided. RESULTS: The search yielded 175 relevant original papers including clinical studies, meta-analyses and systematic reviews (nâ¯= 65) for the search period. A large number of studies document that vitiligo is associated with considerable psychosocial stress and relevant losses in quality of life. Problem areas particularly concern stigmatisation, sexual dysfunction, anxiety, reduced self-esteem and problems at work. The observed increased levels of anxiety and depression correlate with the severity and activity of vitiligo. Often, comorbidity also contributes to reduced self-esteem and social isolation. These factors determine a high need for care in a relevant proportion of those affected. CONCLUSION: Vitiligo is not primarily a cosmetic problem, but a disease requiring treatment according to the World Health Organisation's definition of health as physical, mental and social well-being. The benefits of treatment options are to be measured by their effects on patient-reported outcomes.
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Costo de Enfermedad , Calidad de Vida , Vitíligo , Vitíligo/psicología , Vitíligo/epidemiología , Humanos , Calidad de Vida/psicología , Estigma Social , Necesidades y Demandas de Servicios de SaludRESUMEN
BACKGROUND: Experiencing food allergies and food insecurity has been linked to socioeconomic, physical, and mental health-related challenges, but less is known about the intersection of these experiences. This study aims to better understand the impact of food insecurity on food allergy patients and their caregivers, with the intention of informing ongoing efforts to improve screening for food insecurity and mental health concerns and reducing their burden among households managing food allergy. METHOD: As part of a community needs assessment, a cross-sectional survey was administered to a large, national sample (N=5,940) of US households with at least one food-allergic individual, The Hunger Vital Sign was utilized to assess food insecurity, the Patient Health Questionnaire (PHQ-4) and Food Allergy Independent Measure (FAIM) were leveraged to measure psychosocial outcomes. RESULTS: Among respondents, 69.9% screened at-risk of food insecurity on the Hunger Vital Sign, while 5.6% reported very low food security. Both adults and children with food allergy (FA) from households at risk for food insecurity were more likely to report FA-related anxiety, anger, loneliness, fear of eating, and bullying victimization than their counterparts from households not at risk of food insecurity (p < .0001 for all). Among these specific experiences, FA-related anxiety was the most common (25.4%/30.1% of children/adults). Perceived risk of food allergy-related fatality was positively associated with food insecurity status. CONCLUSION: Individuals with food allergies who are concomitantly experiencing food insecurity are at greater risk of a variety of mental health concerns, including those specific to food allergy as well as more general anxiety and depressive symptoms.
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Hipersensibilidad a los Alimentos , Inseguridad Alimentaria , Humanos , Hipersensibilidad a los Alimentos/psicología , Estudios Transversales , Femenino , Masculino , Adulto , Persona de Mediana Edad , Niño , Adolescente , Encuestas y Cuestionarios , Estados Unidos , Ansiedad/epidemiología , Composición Familiar , Cuidadores/psicología , Salud Mental , Adulto JovenRESUMEN
Stigmatization of patients with skin diseases has only recently attracted more attention in research. However, both external stigmatization by society and self-stigmatization by the affected patients are widespread in patients with skin diseases. Many studies show that in this group of patients, the experience of both kinds of stigmatization is associated with psychosocial burden, such as social anxiety. This is often independent of the visibility of skin lesions. The psychosocial burden of affected individuals may lead to psychological comorbidities, such as depression or anxiety disorders, making it important to screen patients in dermatologic settings for the presence of these conditions. Interventions to reduce external and self-stigmatization have been developed, but more randomized controlled trials are needed to test the effects of such interventions.
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Enfermedades de la Piel , Estereotipo , Humanos , Pacientes , Trastornos de Ansiedad , AnsiedadRESUMEN
BACKGROUND: The transition to parenthood represents a critical life period with psychosocial, and behavioral changes and challenges for parents. This often increases stress and leads to unhealthy weight gain in families, especially in psychosocially burdened families. Although universal and selective prevention programs are offered to families, specific support often fails to reach psychosocially burdened families. Digital technologies are a chance to overcome this problem by enabling a low-threshold access for parents in need. However, there is currently a lack of smartphone-based interventions that are tailored to the needs of psychosocially burdened families. AIMS: The research project I-PREGNO aims to develop and evaluate a self-guided, smartphone-based intervention in combination with face-to-face counseling delivered by healthcare professionals for the prevention of unhealthy weight gain and psychosocial problems. The intervention is specifically tailored to the needs of psychosocially burdened families during the pregnancy and postpartum period. METHODS: In two cluster randomized controlled trials in Germany and Austria (N = 400) psychosocially burdened families will be recruited and randomized to i) treatment as usual (TAU), or ii) I-PREGNO intervention (self-guided I-PREGNO app with counseling sessions) and TAU. We expect higher acceptance and better outcomes on parental weight gain and psychosocial stress in the intervention group. DISCUSSION: The intervention offers a low cost and low-threshold intervention and considers the life situation of psychosocially burdened families who are a neglected group in traditional prevention programs. After positive evaluation, the intervention may easily be implemented in existing perinatal care structures in European countries such as Germany and Austria. TRIAL REGISTRATION: Both trials were registered prospectively at the German Clinical Trials Register (Germany: DRKS00029673; Austria: DRKS00029934) in July and August 2022.
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Periodo Posparto , Telemedicina , Femenino , Humanos , Embarazo , Ensayos Clínicos Controlados Aleatorios como Asunto , Estrés Psicológico/prevención & control , Aumento de PesoRESUMEN
Pancreatic cysts are an increasingly identified entity with significant health care implications. Although some cysts present with concurrent symptoms that often require operative intervention, the advent of improved cross-sectional imaging has heralded an era of increased incidentally detected pancreatic cysts. Although the rate of malignant progression in pancreatic cysts remains low, the poor prognosis of pancreatic malignancy has driven recommendations for ongoing surveillance. A uniform consensus has not been reached on the management and surveillance of pancreatic cysts leading clinicians to grapple with the burden of how best to approach pancreatic cysts from a health, psychosocial, and cost perspective.
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Quiste Pancreático , Neoplasias Pancreáticas , Humanos , Quiste Pancreático/diagnóstico por imagen , Quiste Pancreático/patología , Neoplasias Pancreáticas/diagnóstico por imagen , Neoplasias Pancreáticas/patologíaRESUMEN
In recent years, some cases of central precocious puberty (CPP) have been reported in patients with autism spectrum disorder (ASD). Here, we report CPP in two girls with ASD. The first case was a girl, 7 years and 9 months of age. Breast budding was observed at 7 years and 2 months and pubic hair at 7 years and 8 months of age. She was diagnosed with CPP based on guidelines and ASD according to her developmental history. Considering the psychosocial burden caused by the discrepancy between her cognitive and behavioral development and the progression of secondary sex characteristics, gonadotropin-releasing hormone (GnRH) analog therapy was initiated. Case 2 was a girl, 9 years and 8 months of age. She was diagnosed with ASD according to her developmental history. Treatment using oral aripiprazole for hypersensitivity to touch and taste had been initiated, with the onset of menarche at 9 years and 10 months of age. Breast budding had been observed before 7 years and 6 months old. She was diagnosed with CPP based on guidelines. Considering that menarche was not a significant psychosocial burden and the difficulty for her and her family to attend regular follow-ups, GnRH analog therapy was not initiated. Although the pathophysiological pathway linking ASD and CPP remains to be elucidated clinically, attention to CPP in ASD is needed, considering the increase in reported cases. In addition, the indication of GnRH analog therapy should be judged considering the psychosocial burden associated with secondary sexual characteristics.
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The detrimental effects of social isolation on physical and mental health are well known. Social isolation is also known to be associated with criminal behavior, thus burdening not only the affected individual but society in general. Forensic psychiatric patients with schizophrenia spectrum disorders (SSD) are at a particularly high risk for lacking social integration and support due to their involvement with the criminal justice system and their severe mental illness. The present study aims to exploratively evaluate factors associated with social isolation in a unique sample of forensic psychiatric patients with SSD using supervised machine learning (ML) in a sample of 370 inpatients. Out of >500 possible predictor variables, 5 emerged as most influential in the ML model: attention disorder, alogia, crime motivated by ego disturbances, total PANSS score, and a history of negative symptoms. With a balanced accuracy of 69% and an AUC of 0.74, the model showed a substantial performance in differentiating between patients with and without social isolation. The findings show that social isolation in forensic psychiatric patients with SSD is mainly influenced by factors related to illness and psychopathology instead of factors related to the committed offences, e.g., the severity of the crime.
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Esquizofrenia , Humanos , Crimen/psicología , Conducta Criminal , Aislamiento Social , Aprendizaje AutomáticoRESUMEN
Despite significantly improved supportive measures, oncological treatment is still exhausting and is accompanied by organ loss, disability and functional limitations. In the longer term those affected have to cope with the loss of important life commodities and after the end of treatment to live under the much-cited "sword of Damocles". Around one third of all people diagnosed with cancer develop a mental disorder at some point during the course of the illness that requires treatment and pronounced stress reactions occur at key points over the course of treatment. Both mental disorders and subsyndromic distress can be successfully treated with psychotherapeutic and psycho-oncological interventions. Therefore, every cancer patient should be informed about the availability and potential benefit of psycho-oncological support after the diagnosis or in the further course of treatment.
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Neoplasias , Médicos , Trastornos Psicóticos , Humanos , Psicooncología , Neoplasias/terapia , Oncología MédicaRESUMEN
We assessed the humanistic and economic burden of chronic red blood cell (RBC) transfusions on patients with ß-thalassemia. This cross-sectional, US-based study included adults (≥18 years) who self-reported a ß-thalassemia physician diagnosis and had received ≥1 RBC transfusion in the past 6 months. The outcomes included the Functional Assessment of Cancer Therapy-Anemia (FACT-An), Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, and ad hoc questions about treatment experience, side effects, direct/indirect costs, and psychological burden. Overall, 100 patients completed the survey, of whom 70% experienced "moderate" to "extremely high" burden due to RBC transfusions, 81% reported iron overload, 42% reported compromised social lives. The mean FACT-An score was 132 (higher score indicates better outcomes; 0-188). Mean scores were 33/52 for fatigue and 20/28 for anemia symptoms in the previous 7 days. Health-related quality of life (HRQoL) temporarily improved after RBC transfusion, although patients continued to experience mild-to-severe depression and anxiety, substantial direct costs, compromised employment, and suboptimal quality of life. Over 6 months, patients dedicated a mean of 173 h to transfusion requirements and incurred out-of-pocket costs of USD 2239 for transfusions and USD 896 for additional care costs. These findings highlight the need for new treatment options to improve patient HRQoL and economic outcomes.
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OBJECTIVE: To evaluate the efficacy of a specialized inpatient rehabilitation program in patients with early in comparison with chronic epilepsy. METHODS: We performed a prospective, open pre/post study using a parallel group design. Patients with early epilepsy (EE, treatment with anti-seizure medication [ASM] ≤ 1 year) or with chronic epilepsy (CE, ASM treatment > 5 years) completed questionnaires at the time of their admission to the rehabilitation program and at discharge. Outcome measures comprised scales from the PESOS questionnaire (PErformance, SOciodemographic aspects, Subjective estimation; e.g., emotional adaptation to epilepsy) as well as screening instruments for depression (Neurological Disorders Depression Inventory for Epilepsy, NDDI-E) and anxiety (Generalized Anxiety Disorder Scale, GAD-7). Linear mixed models (LMMs) were used to determine the effects of the program in the total group and to compare the effects between patients with EE and CE. RESULTS: The analyses included 79 patients with EE and 157 patients with CE. Baseline comparisons revealed differences in disease-related and sociodemographic variables (e.g., patients with EE were older, those with CE had a higher seizure frequency and a higher rate of unemployment; all p < .01). LMMs showed significant improvements in emotional adaptation to epilepsy, depression, anxiety, overall quality of life and overall health as well as in perceived overall restrictions because of epilepsy and the subjective level of information about epilepsy (all p < .001). Despite the different duration of epilepsy, baseline levels as well as improvements did not differ between patients with EE and CE (all p > .05) except for the perceived level of information, which was significantly lower in patients with EE at admission and improved to a higher extent in this group (both p < .001). CONCLUSION: Both patients with EE and patients with CE who are referred to a specialized comprehensive rehabilitation program benefit from the participation in this program with respect to emotional adaptation to epilepsy, aspects of quality of life, and level of information about epilepsy.
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Epilepsia , Calidad de Vida , Humanos , Calidad de Vida/psicología , Pacientes Internos , Estudios Prospectivos , Epilepsia/psicología , Ansiedad/etiología , Ansiedad/psicología , Depresión/etiología , Depresión/psicologíaRESUMEN
INTRODUCTION: Previous research reported transactional relations between child functioning and parenting stress. There is limited evidence whether a transactional developmental model also fits children below the age of 12 months, especially in psychosocially burdened families. This study aims to test the fit of a transactional model during the first 3 years of life and examines whether the model differs between families with low and high psychosocial burden. METHODS: A total of 302 psychosocially burdened families were observed over 3 years at age 4, 12, 24, and 36 months. Child behavioral problems and parenting stress were assessed via self-report while psychosocial burden was assessed via external rating at baseline. Cross-lagged panel analysis was used to investigate the fit of a transactional model. RESULTS: A transactional model fitted the data significantly better (Δχ2 = 81.87, p < 0.001) than an autoregressive model reaching acceptable to good fit indices (CFI = 0.96, RMSEA = 0.09). The model indicated moderate stability within and reciprocal effects between child behavioral problems and parenting stress from age 12 to 36 months. From age 4 to 12 months, parenting stress predicted child behavioral problems but not vice-versa. Model fit indices and transactional relations did not substantially differ between families with low and high psychosocial burden, except for child effects on parenting stress during the first year of life, which were only evident in higher burdened families. CONCLUSION: Transactional relations among child and parent variables are evident in the first 3 years of life. Child effects in the first year of life may be restricted to highly psychosocially burdened families. Future research may focus on potential mediating variables such as parental sensitivity or contextual variables like significant life events. Targeted prevention strategies should be adapted to the level of psychosocial burden to account for the differing transactional relations.
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Relaciones Madre-Hijo , Responsabilidad Parental , Niño , Humanos , Lactante , Preescolar , Responsabilidad Parental/psicología , Estudios Longitudinales , Autoinforme , Relaciones Padres-Hijo , Padres , Estrés Psicológico/psicologíaRESUMEN
BACKGROUND: The global prevalence of chronic kidney disease is growing at an alarming rate, and the number of patients progressing to kidney failure is increasing. A substantial number of patients are undergoing hemodialysis (HD), which improves health and lengthens life. However, it imposes multiple physical and psychological demands on the patients. With the intensity of symptoms being greater among women, a greater focus is needed to obtain empirical evidence regarding the health problems of females receiving HD. MATERIALS AND METHODS: A descriptive qualitative design was used to explore the health problems of women undergoing maintenance HD. The sampling technique used was maximum variation purposive sampling. The data were collected through in-depth face-to-face interviews with 12 female patients attending the dialysis unit of a tertiary care hospital in northern Kerala, South India, using a semi-structured interview guide. The interview was audiotaped, and the participant content was later converted verbatim into English. The content was imported to NVivo and coded. Thematic analysis was performed using Braun and Clarke's six-step approach. RESULT: During data analysis, six major themes and 20 subthemes emerged. The themes include (1) physical suffering, (2) mental agony, (3) restricted life, (4) sexual inactivity, (5) breakdown of social life, and (6) financial hardship. CONCLUSION: Females undergoing maintenance hemodialysis experience significant health-related issues in all major dimensions of health. They are physically vulnerable, psychologically defeated, and socially detached. The study highlights the need for detailed evaluation and consistently supportive and educational care.
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BACKGROUND: The Covid-19 pandemic led to increased work-related strain and psychosocial burden in nurses worldwide, resulting in high prevalences of mental health problems. Nurses in long-term care facilities seem to be especially affected by the pandemic. Nevertheless, there are few findings indicating possible positive changes for health care workers. Therefore, we investigated which psychosocial burdens and potential positive aspects nurses working in long-term care facilities experience during the Covid-19 pandemic. METHODS: We conducted a mixed-methods study among nurses and nursing assistants working in nursing homes in Germany. The survey contained the third German version of the Copenhagen Psychosocial Questionnaire (COPSOQ III). Using Welch's t-tests, we compared the COPSOQ results of our sample against a pre-pandemic reference group of geriatric nurses from Germany. Additionally, we conducted semi-structured interviews with geriatric nurses with a special focus on psychosocial stress, to reach a deeper understanding of their experiences on work-related changes and burdens during the pandemic. Data were analysed using thematic coding (Braun and Clarke). RESULTS: Our survey sample (n = 177) differed significantly from the pre-pandemic reference group in 14 out of 31 COPSOQ scales. Almost all of these differences indicated negative changes. Our sample scored significantly worse regarding the scales 'quantitative demands', 'hiding emotions', 'work-privacy conflicts', 'role conflicts', 'quality of leadership', 'support at work', 'recognition', 'physical demands', 'intention to leave profession', 'burnout', 'presenteeism' and 'inability to relax'. The interviews (n = 15) revealed six main themes related to nurses' psychosocial stress: 'overall working conditions', 'concern for residents', 'management of relatives', 'inability to provide terminal care', 'tensions between being infected and infecting others' and 'technicisation of care'. 'Enhanced community cohesion' (interviews), 'meaning of work' and 'quantity of social relations' (COPSOQ III) were identified as positive effects of the pandemic. CONCLUSIONS: Results clearly illustrate an aggravation of geriatric nurses' situation and psychosocial burden and only few positive changes due to the Covid-19 pandemic. Pre-existing hardships seem to have further deteriorated and new stressors added to nurses' strain. The perceived erosion of care, due to an overemphasis of the technical in relation to the social and emotional dimensions of care, seems to be especially burdensome to geriatric nurses.
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COVID-19 , Enfermeras y Enfermeros , Anciano , COVID-19/epidemiología , Estudios Transversales , Humanos , Casas de Salud , Pandemias , Encuestas y Cuestionarios , Carga de Trabajo/psicologíaRESUMEN
Background: Cow's milk is a food allergen of public health importance both in the United States and globally. Its natural history and epidemiology have been most studied among infants and young children, but the public health burden it places on adults and older pediatric populations remains unclear. This study comprehensively characterizes the US population-level burden of cow's milk allergy (CMA), including its prevalence, severity, health care utilization, psychosocial impact, natural history, and other associated factors-including ability to tolerate extensively heated milk products-within a large, nationally-representative survey sample of US households. Methods: A cross-sectional survey was administered via web and telephone. Population level inference was based on data collected from participants recruited from National Opinion Research Center (NORC) at the University of Chicago's probability-based AmeriSpeak panel. Established dual-sample complex survey calibration methods were used to augment this sample with additional participants recruited through Survey Sampling International to increase the precision of the resulting estimates. In total, surveys were administered to a nationally representative sample of 51 819 US households from October 1, 2015, through September 31, 2016. Self-report responses from 40 453 adults and parent-proxy report for 38 408 children were analyzed. Results: Analyzing survey responses from 78 851 individuals, an estimated 4.7% (95% CI, 4.4%-4.9%) of the US population reported current CMA, whereas 1.9% (95% CI, 1.8%-2.1%) met symptom-report criteria for convincing IgE-mediated allergy. An estimated 0.9% (95% CI, 0.8%-1.0%) had CMA that met convincing symptom-report criteria and was physician diagnosed. Female and White respondents were more likely to report outgrowing CMA relative to males and those reporting other races and ethnicities. Individuals with CMA who reported tolerance to baked milk products were less likely to report severe reaction histories (33.5% vs 42.7%; p = .03), a lifetime history of food allergy-related emergency department visits (43.4% vs. 55.8%; p = .005), and treating a milk-allergic reaction with epinephrine (10.6 vs. 18.9%; p = .003). These individuals also exhibited less psychosocial burden on the validated Food Allergy Independent Measure (FAIM) than their counterparts with CMA who were allergic to baked forms of milk. Conclusion: These data indicate a discrepancy in reported rates of allergy to cow's milk among the US general population ranging from approximately 1 in 20 with reported CMA to fewer than 1 in 50 with physician-confirmed CMA. However, they suggest a substantial population-level burden of CMA, including substantial healthcare utilization, psychosocial burden and nutritional impacts-particularly among the approximately 30% of individuals with CMA who cannot tolerate baked forms of milk.