The Psychosocial Burden of Families with Childhood Blood Cancer

Cancer is the second leading cause of death for children, and leukemias are the most common pediatric cancer diagnoses in Chile. Childhood cancer is a traumatic experience and is associated with distress, pain, and other negative experiences for patients and their families. Thus, psychosocial costs represent a large part of the overall burden of cancer. This study examines psychosocial experiences in a sample of 90 families of children with blood-related cancer in Chile. We provide a global overview of the family experience, focusing on patients, caregivers, and siblings. We find that most families report a negative impact upon diagnosis; disruptions in family dynamics; a range of negative feelings of the patient, such as depression, discouragement, and irritability; and difficulty with social lives. Additionally, they report negative effects in the relationship between the siblings of the patient and their parents, and within their caregivers’ spouse/partner relationship, as well as a worsening of the economic condition of the primary caregiver. Furthermore, over half of the families in the sample had to move due to diagnosis and/or treatment. Promoting interventions that can help patients, siblings, and parents cope with distress and promote resilience and well-being are important.

Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol

Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers.

Frequency and Correlation of Depression in Melasma Patients

Background: Melasma is hyper-pigmentation of skin, usually seen in young female adults, and previous studies have established substantial psychosocial burden associated with this disease. Aim: To measure the frequency of depression in melasma patients and its correlation with severity of melasma Study Design: Descriptive cross-sectional study. Place and duration of study: Dermatology OPD, HIT Hospital Taxila from 1st January 2021 to 31st August 2021 Methods: One hundred consecutive patients of melasma diagnosed by a skin specialist were enrolled. Elderly patients aged >60 years, those with previous psychiatric disease or chronic illnesses and on long term streroids were not included. After getting written informed consent, enrolled patients were screened for depression using Patient Health Questionnaire 9 (PHQ-9) Results: There were 17 males and 83 females. The mean age was 41.5±8.14 years. On MASI scale for assessing severity of melasma, 38 patients scored mild, 51 scored moderate and 11 scored severe. Using Patient Health Questionnaire 9 (PHQ-9) in patients with melasma, 18 patients didn’t have depression, 38 had mild depression, 31 had moderate depression, 6 had moderately severe depression and 7 had severe depression. Conclusion: The frequency of depression is quite high in patients suffering from melasma. It indicates a need for prompt diagnosis, appropriate intervention at correct time to ensure patient’s compliance to therapy to improve his disease outcome. Keywords: Depression, Melasma, Frequency

Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients

For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.

Medium-term and peri-lockdown course of psychosocial burden during the ongoing COVID-19 pandemic: a longitudinal study on patients with pre-existing mental disorders

While the COVID-19 pandemic continues, patients with pre-existing mental disorders are increasingly recognized as a risk group for adverse outcomes. However, data are conflicting and cover only short time spans so far. Here, we investigate the medium-term and peri-lockdown-related changes of mental health outcomes in such patients in a longitudinal study. A cohort of 159 patients comprising all major mental disorders (ICD-10 F0-F9) were interviewed twice with the Goettingen psychosocial Burden and Symptom Inventory (Goe-BSI) to evaluate psychosocial burden, psychiatric symptoms and resilience at the end of the first (April/May 2020) and the second lockdown in Germany (November/December 2020). For the primary outcome “psychosocial burden” ratings also comprised retrospective pre-pandemic (early 2020) and very early states during the pandemic (March 2020). For all diagnostic groups, psychosocial burden varied significantly over time (p < 0.001) with an increase from the pre-pandemic to the initial phase (p < 0.001), followed by a steady decrease across both lockdowns, normalizing in November/December 2020. Female gender, high adjustment disorder symptom load at baseline and psychiatric comorbidities were risk factors for higher levels and an unfavorable course of psychosocial burden. Most psychiatric symptoms changed minimally, while resilience decreased over time (p = 0.044 and p = 0.037). The longitudinal course of psychosocial burden indicates an initial stress response, followed by a return to pre-pandemic levels even under recurrent lockdown conditions, mimicking symptoms of an adjustment disorder. Strategies for proactive, specific and continuous treatment have to address resilience capacities before their depletion in the pandemic aftermath, especially for patients with additional risk factors.

The Association Between Psychological Symptoms and Self-Reported Temporomandibular Disorders Pain Symptoms in Children and Adolescents

Background: Several studies have reported an association between temporomandibular disorder pain (TMD-P) and emotional disorders in children and adolescents. However, no studies have reported if self-reported TMD-P in Saudi Arabia is associated with psychosocial symptoms. Therefore, the current study aimed to evaluate the association between self-reported TMD-P with depression, anxiety and somatic problems in children and adolescents in Saudi Arabia. The hypothesis was that there is an association between self-reported TMD-P and psychological symptoms among children and adolescents.Materials and Methods: The included participants were randomly selected boys and girls aged between 10 and 18 years, with a mean (SD) age of 14.0 (2.3) years. Out of 633 children and adolescents that were invited to participate, 509 voluntarily agreed to participate, and 466 completed all questionnaires. The questionnaires included items retrieved from the Youth Self Report (YSR) and Axis II of the Research Diagnostic Criteria for TMD (RDC/TMD) besides demographic data, medical history, and presence of oral parafunctions. To assess the presence of self-reported TMD-Pain, each participant was verbally asked two validated questions regarding the presence of TMD-P and dysfunction (2Q-TMD).Results: Self-reported TMD-P in children and adolescents was significantly associated with anxiety, depression, somatic symptoms, and social problems (P &lt; 0.0001). Further, the frequencies of anxiety, depression, and somatic disorders were more evident among children and adolescents who suffered from TMD-P (P &lt; 0.0001). The odds of reporting TMD-P in children and adolescents was 1.4 times for border line and clinical diagnosis scores for anxiety and withdrawal depression domains, and 2.6 times for the somatic symptoms' domains. However, in the multiple regression model after controlling for possible confounders, only somatic symptoms and social scores were significant. Moreover, self-reported TMD-P was twice as prevalent among girls compared to boys.Conclusion: This study reports a significant association between psychosocial burden and presence of self-reported TMD-Pain, with a stronger impact on girls than boys. There were significantly higher number of participants with self-reported TMD-P reporting a poor oral and general health. In addition, self-reported TMD-P was higher among those with borderline and clinically diagnosed anxiety/depression scores. Based on this finding, the current study supports that an early approach and recognition of children and adolescents with anxiety, depression, somatic symptoms, and TMD problems. This could result in a lesser burden for these children and adolescents both in regard to pain and psychosocial implications with increased quality of life.

QOLP-27. NEURO-ONCOLOGICAL PATIENTS' AND CAREGIVERS' PSYCHOSOCIAL BURDEN DURING THE COVID-19 PANDEMIC – A PROSPECTIVE STUDY WITH QUALITATIVE CONTENT ANALYSIS

OBJECTIVE The COVID-19 pandemic may reinforce psychosocial distress of neuro-oncological patients. We aimed to 1) differentiate the burden caused by the pandemic vs. the tumor and 2) establish topics relevant for brain tumor patients (BTPs) and caregivers. METHODS Patients and caregivers were prospectively assessed from April 2020 – July 2020 by a 10-item comprising interview over the phone, including qualitative and quantitative questions. They were quantitatively evaluated i.a. by the Distress Thermometer (DT, score 1-10). The qualitative questions were analyzed using structured content analysis: The interview questions defined the main categories. Subcategories were derived by an inductive approach assessing the frequency of patients' and caregivers' answers. RESULTS A total of 69 patients and 20 caregivers were interviewed; n= 36 were female (49%), mean age was 53 years (range 32-81). Patients' disease-related DT scores were higher than the COVID-19-related DT scores: the median of the disease-related DT score was 7 (range 2-10) vs. median of COVID-19-related distress: 5.0 (range 2-7). Caregivers perceived a higher burden due to the disease (DT median disease: 8; range 2-10 vs. DT pandemic: 3, range 0-10). A total of 5 main and 21 subcategories were elaborated, most frequently mentioned were "restrictions in public and private affairs" (28%), "changes in the psychological well-being" (23%), "limited social interaction by contact restriction" (25%). Subcategories relevant for caregivers were similar to those of BTPs. CONCLUSION A considerable proportion of patients and caregivers still perceived the brain tumor disease as more burdensome than the pandemic. We established main and subcategories of interview items possibly of great relevance to patients during these difficult times, which could be implemented in the content-related adaption of the psychosocial assessment.

Managing patterned hair loss – a hair raising task!

Diffuse alopecia wields a significant psychosocial burden by virtue of its clinical presentation and visibility. Patterned alopecia is an umbrella term with the focus point being androgen-mediated alopecias - androgenetic alopecia/male pattern baldness/male androgenetic alopecia and female pattern hair loss/female androgenetic alopecia, both of which have a genetic susceptibility that alters the follicular sensitivity to circulating androgens. Diffuse alopecia affects nearly half the population based on weighted averages. It may present with hair shedding and hair thinning (miniaturization) or a combination. With the female variant, the role of androgens is not fully delineated; hence, the term female pattern hair loss which has replaced prior nomenclature. Managing patterned hair loss has seen a sea change in the last decade, moving well beyond the FDA-approved modalities - topical minoxidil and oral finasteride. Through this short review, the authors have attempted to condense existing information into a ready reference.

429 - Human rights crisis for older people during the COVID-19 pandemic in India: Psychosocial cohesion as a mitigating strategy

It has been more than a year of the global unprecedented Coronavirus disease 2019 (COVID-19) crisis. The pandemic has exposed and exploited risks not only related to health, but also the societies, economies and our future. India, being one of the worst hit nations during this outbreak, has faced a significant economic fallout with certain vulnerable populations enduring major humanitarian crisis. The frontline workers, age and gender minorities, socio-economically impoverished and migrant workers have been disproportionately affected in India, with the disparities being widened further in the sub- continent with the second largest population and a marked socio-ethnic diversity.COVID-19 is in no way a “great equalizer”, contrary to its popular term. Older adults are at disproportionate risk of severe infection, mortality as well as loneliness, seclusion, abuse and neglect during the pandemic. Age and ageism have both factored as risks for physical and psychosocial burden of the elderly. Besides the medical factors, lack of social security, isolation, stigma, sexism, elder abuse, loss of autonomy and restricted healthcare access are crucial in the pandemic situation. Among the proposed pathways to restore human rights and societal balance during such a global crisis, social cohesion is a potential strategy. A multi-dimensional driver of long-term prosperity and collectivism, social cohesion refers to the extent of connectedness and solidarity among various groups. Interpersonal relationships within the community and sense of belongingness are the twin pillars on which social cohesion stands. This presentation reviews psychosocial vulnerabilities of older adults during infectious disease outbreaks in light of the present pandemic and proposes strategies to mitigate this marginalization through the WHO’s concept of healthy ageing based on social cohesion and inclusion. In this regard, policies and interventions require deep reflections on how best to balance opportunities and adversities, and sustain resilience to cope both with the present and future.