Psychological impact after treatment in patients with head and neck cancer

Background: Cancer is the second cause of death all over the world and it causes considerable morbidity, disability, and treatment sequela, which often lead to post-treatment pain and disfigurement. This study aims to evaluate such physical sequelae, and their psychological, (cognitive and emotional), impact, in a cohort of patients treated for Head and Neck (HNC) cancer, in search for methods to help such patients deal effectively with the psychological effects of their cancer treatments adverse consequences. Material and methods: The sample consists of 56 subjects, 47 men and 9 women, ranging from 47 years to 86 years of age, who were treated for head and neck cancers at Spanish Public General Hospital in the Otolaryngology Unit, Surgery Section. Two types of questionnaires were used in the study: the Questionnaire of Sequelae after Treatment of head and neck carcinoma and the State-Trait Anxiety Inventory (STAI-E and R). Results: With respect to anxiety, the study found high levels of state anxiety which was significantly associated with the degree of perception of social stigma but was not associated with the post-treatment sequelae themselves nor with the level of discomfort that such symptomatic sequelae produced. The presence of a post-surgical stoma with cannula, increased patient's stigma (both components: external rejection and self-rejection) and state anxiety ratings, while there was no difference in state anxiety between cannulated and non-cannulated patients. There are few differences between men and women in terms of the presence of anxiety and their responses are similar in terms of the after-effects of surgery. Conclusions: Our study confirmed that current treatments for Head and Neck carcinoma generate adverse symptomatic sequela that impose significant psychological and physical burden for these patients. We will discuss the various pathways for preventive intervention that these findings open up. (AU)

Calidad de vida relacionada con la salud en niños y niñas con síndrome de Down / Health-related quality of life in children with Down syndrome

Introducción. Los pacientes con síndrome de Down (SD) presentan características que pueden afectar su calidad de vida. El objetivo de este trabajo fue evaluar la calidad de vida relacionada con la salud (CVRS) en pacientes con síndrome de Down. Población y métodos. Se realizó un estudio de corte transversal para evaluar CVRS con el cuestionario PedsQL 4.0 a pacientes de 2 a 4 años con síndrome de Down y a pacientes sanos en 2020-2021 en un hospital universitario. Resultados. Se incluyeron 51 pacientes en cada grupo. El puntaje de CVRS en infantes con SD fue 82,1 vs. 88 (p = 0,003) comparado con población sin SD. La salud psicosocial fue la más afectada (p = 0,007), especialmente, en el funcionamiento social y el escolar (p = 0,0001). Conclusión. Se observó que los niños y niñas con SD de 2 a 4 años tuvieron menor CVRS. La escala de la salud psicosocial fue más afectada, especialmente, el funcionamiento social y el escolar.

Introduction. The characteristics of patients with Down syndrome (DS) may affect their quality of life. The objective of this study was to assess the health-related quality of life (HRQoL) in patients with DS. Population and methods. This was a cross-sectional study to assess the HRQoL with the PedsQL 4.0 questionnaire administered to patients with DS and healthy patients aged 2 to 4 years in 2020­2021 at a teaching hospital. Results. Each study group included 51 patients. The HRQoL score in children with DS was 82.1 compared to 88 (p = 0.003) in the population without DS. Psychosocial health was impacted the most (p = 0.007), especially in terms of social and school functioning (p = 0.0001). Conclusion. Children with DS aged 2 to 4 years were observed to have a lower HRQoL. The psychosocial health scale was affected the most, especially in terms of social and school functioning.

Quality of life and associated factors among infertile women attending infertility clinic at Mnazi Mmoja Hospital, Zanzibar.

BACKGROUND: Worldwide, it is estimated at least 50 million couples are affected by infertility with the prevalence of infertility being 16% in Tanzania. Psychological impact of infertility in patients negatively affects women's Quality of Life (QoL) defined as a person`s perception of where they are in life in terms of culture and value in the emotional, mind-body, relational, social, environment and tolerability of treatment aspects. Poor Quality of Life is related to increased treatment discontinuation. The aim of this study was to determine the Quality of Life and associated factors among infertile women attending infertility clinic at Mnazi Mmoja Hospital, Zanzibar. METHODS: A hospital based cross-sectional study was conducted among 340 infertile women attending infertility clinic at Mnazi Mmoja Hospital, Zanzibar. Data was collected using FertiQoL tool. The factors associated with Quality of Life using FertiQoL tool in infertile women were estimated in a multivariable linear regression model at 95% confidence interval and 5% level of significance. RESULTS: Quality of life of infertile women at Mnazi Mmoja infertility clinic was 70.6 ± 10.0 on a scale of 0 to 100. It increased significantly with increase in educational level (p = 0.009). Women with female individual causes on average had 5.07 (B=- 5.07, 95%CI: -7.78, -2.35) and women with individual and respective male partner causes of infertility had on average 4.95 (B= -4.95, 95% CI: -7.77, -2.12) respective decrease in the FertiQoL scores compared to those who had their male partner with problems as reason for infertility. There was an average 4.50 (B=-4.50, 95% CI: 2.30, 6.70) decrease in quality of life in women with secondary infertility compared to women with primary infertility. Every month increase in duration of infertility led to an average of 0.04 (B=-2.57, 95%CI: -0.07, -0.01) decrease in FertiQoL scores. CONCLUSION: The overall quality of life in this population was positively associated with level of education but negatively affected with reason for infertility, type of infertility and duration of infertility.

Self-rated health and quality of life in female sex workers with substance use disorders in Tehran, Iran.

BACKGROUND: While self-rated health (SRH) and quality of life (QoL) has been associated with substance use disorders (SUDs) in sex-working populations, little is known about this association in Iran. This study aimed to assess QoL and SRH in Iranian female sex workers (FSWs) in Tehran. METHOD: FSWs were recruited using convenience sampling methods from substance abuse treatment centers in Tehran that exclusively provided services for women. Participants completed an interviewer-administered demographic questionnaire in Persian and the Iranian version of the Short Form Health Survey (SF-36). Descriptive analyses, means and standard deviations; frequency and percentages, t-test and one-way ANOVA, and Chi-square tests were utilized to analyze the data. RESULTS: The mean age among 161 participants clinically diagnosed with SUD was 34.09 years (SD 7.97; range: 18-57). The total mean QoL score was 41.03 (SD: 12.92). The highest and lowest mean scores were observed in the physical functioning (52.23) and role emotional (26.64) dimensions, respectively. Significant differences (p < 0.05) in QoL were observed according to education and marital status, and the average QoL score was lower in women who reported permanent marriages and women who were illiterate. The average score of QoL was significantly higher in employed women. Overall, 51.6% of the women rated their health as sub-optimal, with divorced participants and women who were illiterate more likely to rate their health as sub-optimal (p < 0.05). CONCLUSION: Results emphasize the need for mental, physical, and sexual health screening and gender-specific interventions to improve QoL in this population. Further investigation may elucidate the consequences of poor SRH and QoL on SUD treatment adherence, sexual risk behavior, and morbidity and mortality in FSWs.

Quality-of-life, concerns, and treatment priorities in patients with cancer-related ischemic stroke: A prospective survey study.

OBJECTIVES: Comorbid cancer with stroke is a complex situation with multiple factors affecting quality of life (QoL). No specific questionnaire exists to assess current drivers of QoL and future concerns and priorities in patients with cancer-related stroke. METHODS: After developing a structured survey instrument, we prospectively interviewed patients with recent ischemic stroke and active cancer to assess views about their condition, factors currently impacting QoL, concerns for the future, and preferences regarding antithrombotic treatment strategy. RESULTS: In 2021-2022, at two quaternary-care stroke and cancer centers, we surveyed 50 patients with cancer-related stroke (mean age 70 years, 42% women). Most (87%) had solid cancers with lung, prostate, and breast cancers being the most prevalent. The most frequent adverse feelings were sadness and anxiety about another stroke. Disability from stroke, pain from cancer, and dependency were the items rated to have the highest current effect on patients' QoL and were ranked as the number one effector on QoL in 25%, 23%, and 16% of surveys, respectively; bleeding was ranked the lowest. Cognitive/memory impairment (ranked first in 28% of surveys), dependency on others (ranked first in 18%), and speech disturbance (ranked first in 16%) were the highest ranked future concerns; bleeding and pain were ranked the lowest. When questioned about antithrombotic treatment preferences to prevent further stroke, 50% favored a more aggressive approach with anticoagulant therapy, 16% favored a less aggressive approach with antiplatelet therapy, and 34% were neutral/unsure. CONCLUSIONS: Patients with cancer-related stroke reported that stroke disability and cancer pain were their most impactful current issues, while long-term cognitive impairment, functional dependence, and speech disturbance were their most important future concerns. These patients seemed to be more concerned about future stroke than bleeding events and tended to prefer a more aggressive antithrombotic strategy, although considerable variability existed.

Correlation of health-related quality of life for older adults with diabetes mellitus in South Korea: theoretical approach.

BACKGROUND: While some studies have explored the health-related quality of life (HRQOL) of older adults with diabetes mellitus (DM) in South Korea using a theoretical framework, these studies suffer sample-related limitations, as they focus only on a specific subgroup of older adults. To address this gap, this study aimed to investigate the predictors of HRQOL of older adults with DM in South Korea, using extensive national data and based on the theory of Health-Related Quality of Life in South Korean Older Adults with Type 2 Diabetes (The HIKOD theory). METHODS: A secondary data analysis was conducted using data from 1,593 participants aged 65 years and older with DM sourced from the 2015-2019 Korea National Health and Nutrition Examination Survey (KNHANES). The variables included in this study are as follows: demographic factors (gender, age, household income, and education level), disease-specific factors (duration of DM, treatment of DM, and control of HbA1c), barriers (number of comorbidities), resources (living alone status), psychosocial factors (perceived stress), and health-promoting behaviors (physical activity and fundus examination). Considering the complex sampling design employed in this study, statistical analyses including Rao-Scott chi-square tests, correlation analysis, and hierarchical multiple regression analysis were conducted. RESULTS: Mobility (45.0%) was the HRQOL dimension with which participants experienced the highest number of problems. Number of comorbidities (r = -0.36, p < 0.001), living alone status (rpb = 0.16, p < 0.001), perceived stress (rpb = 0.14, p < 0.001), and physical activity (rpb = 0.12, p < 0.001) were correlated with HRQOL. While adjusting for background factors, HRQOL was negatively predicted by higher number of comorbidities (estimate B = -0.03, p < 0.001), living alone (estimate B = -0.03, p = 0.043), higher perceived stress (estimate B = -0.09, p < 0.001), and lower physical activity (estimate B = -0.03, p < 0.001). CONCLUSION: Complex and diverse factors influence HRQOL among older adults with DM in South Korea. To improve their HRQOL, intervention programs that integrally regard HRQOL, along with various predictors, are necessary.

Living with a rare disease - experiences and needs in pediatric patients and their parents.

BACKGROUND: A rare disease (RD) diagnosis and therapy can affect the family's quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients' and parents' experiences in daily life and with the health care system as well as their needs and current pathways to psychosocial care to develop implementation strategies adapted to the families' needs. METHODS: The present analysis is part of the national multicenter study "Children Affected by Rare Disease and Their Families-Network (CARE-FAM-NET)." We conducted semi-structured telephone interviews with children, adolescents, and young adults with RD (aged 12 to 21 years) and parents of children with RD (aged 0 to 17 years). We analyzed the transcribed and anonymized interviews using the method of focused interview analyses to identify previous experiences with medical and psychosocial care and possible needs for improvement and support. RESULTS: Seventy-four parents of children with RD and 15 children, adolescents, and young adults with RD participated. Five main themes emerged. Daily life with an RD: RD affects the everyday and social life of the respondents, negatively impacting mental well-being. Experiences with the health care system: The long diagnostic path is stressful for families. Professionals' lack of information/education leads to inadequate care for those affected. Psychosocial support: Families do not know about psychosocial care services. In some cases, the families take advantage of psychosocial support services (such as support groups or advocacy groups), which are predominantly very helpful. Difficulties and barriers: Time, socio-legal and organizational problems burden families and lead to advantages in using psychosocial services. Improvements for patient-oriented support: Those affected wished for timely, preventive support (especially in administrative and socio-legal matters) and education regarding psychosocial care services. CONCLUSION: RD represent a great challenge for all family members - patients, parents, and siblings. The patients' and parents' previous experiences in daily life, medical and psychosocial care show a need for target-group specific support, including training of health care professionals and low-threshold access care services and practical help for all family members.

A network analysis of the long-term quality of life and mental distress of COVID-19 survivors 1 year after hospital discharge.

Objectives: COVID-19 survivors suffer from persistent mental distress and impaired quality of life (QOL) after recovery from the infection. However, the symptom-symptom interaction between these psychological variables remained unexplored. The present study aimed to determine the symptom network of mental distress (depression, anxiety, sleep disturbance, fatigue, and post-traumatic stress disorder) and their association with QOL among 535 COVID-19 survivors 1 year after hospital discharge. Methods: 9-item Patient Health Questionnaire, 7-item Generalized Anxiety Disorder Scale, Chalder fatigue scale, Impact of Event Scale-Revised, Pittsburgh Sleep Quality Index, and 36-Item Short-Form Health Survey were applied to measure depression, anxiety, fatigue, PTSD, sleep disturbances, and QOL, respectively. Two networks were estimated using Gaussian graphical model. Network 1 consisted of mental symptoms to determine the central and bridge symptoms. Network 2 additionally included QOL to determine which mental symptoms were mostly related to QOL. Results: 60% of the COVID-19 survivors experienced mental distress 1 year after hospital discharge. Uncontrollable and excessive worry, psychomotor symptoms, intrusion, and daytime dysfunction were the most central symptoms. Daytime dysfunction and fatigue (especially mental fatigue and loss of energy) served as the bridge symptoms across the mental distress network and exhibited the most substantial association with QOL. Conclusion: Our study demonstrated several key symptoms that played a vital role in mental distress and QOL among COVID-19 survivors. Prompt screening and targeted interventions for these symptoms might hold great promise in preventing mental distress and improving QOL in COVID-19 survivors.

Psychometric properties of the Chinese version of the functional assessment of chronic illness therapy-fatigue (FACIT-F) among patients with breast cancer.

BACKGROUND: Fatigue is the most frequent and distressing symptom affecting the physical, cognitive, and affective domains of breast cancer patients. The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) has been widely used in patients with chronic diseases and has shown satisfactory reliability and validity. This study aimed to examine the psychometric properties of the FACIT-F among Chinese patients with breast cancer. METHODS: Using a convenience sampling method, a cross-sectional survey (January 2020 and September 2022) was used with patients recruited from two tertiary hospitals in Shanghai, Mainland China, and a total of 597 patients completed a demographic information questionnaire, the FACIT-F and the Functional Assessment of Cancer Therapy for Breast Cancer (FACT-B). Convergent validity was estimated by calculating the Pearson correlation coefficient of the FACIT-F with the FACT-B. Measurement invariance across age was performed by examining differential item functioning (DIF) across age groups (≤ 60 and > 60 years). The internal consistency and split-half reliability were performed for reliability analysis. Unidimensionality of the scale was evaluated by the principal component analysis by Rasch analysis. Additionally, Rasch analysis was performed for item difficulty levels, and an item-person map was used. RESULTS: No floor/ceiling effects were observed for the FACIT-F. Moderate correlations were found between FACIT-F and FACT-B (r = - 0.342, p < 0.01). Most items showed an absence of DIF regarding age, except for one item. In addition, the FACIT-F showed acceptable internal consistency. Principal component analysis of Rasch residuals showed that the proportion of variance explained by the FACIT-F was 53.3%, and the outfit mean square statistics for the items ranged from 0.68 to 1.90 and the infit MNSQ from 0.63 to 1.73. Additionally, an acceptable response between items and persons was found. CONCLUSIONS: The findings indicate that the Chinese version of the FACIT-F is a valid tool for the measurement of fatigue in breast cancer patients.

Development and validation of a disease-specific quality of life measure QLICD-HY (V2.0) for patients with hypertension.

The purpose of the present study is to develop and validate the hypertension scale of the Quality of Life Instruments (QoL) for Chronic Diseases system, QLICD-HY (V2.0). The QLICD-HY (V2.0) was developed via a programmed decision method with several focus groups, nominal discussions and pilot testing. The data was collected from 370 hypertensive inpatients and measured their QoL three times before and after treatment. Using correlation, factor analyses, as well as t-tests, the psychometric properties of the scale were assessed with regard to validity, reliability and responsiveness. Correlation and factor analysis supported good construct validity and criterion-related validity when using Short Form 36 as a criterion. Test-retest reliability coefficients for the overall scale score and all domains, with the exception of the psychological and social domain (0.77, 0.78), were greater than 0.80, with a range of 0.77-0.92. The internal consistency for all domains was higher than 0.70. With the exception of the psychological domain and social domain, the overall score and scores for the majority of aspects within each domain underwent statistically significant changes (t-tests) after the treatment. The QLICD-HY (V2.0) has good validity, reliability and responsiveness and can be used as a QoL measure for hypertensive patients.

Translation and evaluation of the HeartQoL in patients with coronary heart disease in Iceland.

BACKGROUND: Health-related quality of life (HRQoL) reflects an individual's own perception of their symptom burden, functional limitations, prognosis, overall health and changes associated with treatment. The HeartQoL is a validated heart disease-specific questionnaire with a physical and an emotional subscale that is used internationally to assess HRQoL in patients with coronary heart disease (CHD). The aim of this study was to translate and evaluate the psychometric properties of the HeartQoL in patients with CHD in Iceland. METHODS: Patients ≥ 18 years (n = 396; mean age 64.4 ± 8.8 years; 79.6% male) admitted with CHD were recruited from two hospitals in Iceland and completed the Icelandic versions of the HeartQoL, Short-Form 12v2 Health Survey (SF-12v2), and Hospital Anxiety and Depression Scale (HADS). A subsample of 47 patients completed the HeartQoL 14 days later. Confirmatory factor analysis for ordinal data was used to evaluate the measurement model with a physical and an emotional subscale. Convergent and divergent validity, internal consistency, and test-retest reliability were evaluated. RESULTS: Overall, the hypothesized two-factor structure of the Icelandic version of the HeartQoL was supported. However, problems with cross-loadings and correlated error variances were identified. Convergent and divergent validity were supported in correlational analyses between HeartQoL, SF-12v2, and HADS. Internal consistency reliability, measured by ordinal alpha, was good for the physical (α = 0.96) and emotional (α = 0.90) subscale. According to intraclass correlations (ICC), acceptable test-retest reliability was demonstrated (ICC = 0.79-0.86). CONCLUSION: With the two-factor structure confirmed, the Icelandic HeartQoL demonstrated satisfactory psychometric properties in the sample of patients with CHD. Users of the instrument can use the original scoring.

Implementing strabismus-specific psychosocial questionnaires in everyday clinical practice: mental health and quality of life in the context of strabismus surgery.

BACKGROUND: Strabismus can have a great negative impact on the quality of life and the well-being of affected patients. In the past, these aspects were often neglected and, compared with somatic functioning, placed in the background. The aim of our study is to elicit factors influencing satisfaction with strabismus surgery, quality of life and expectations of surgery in order to better predict who will benefit the most and who may need further support. METHODS: We made a selection of suitable questionnaires to assess psychosocial aspects of strabismus and decided for Adult Strabismus 20 Questionnaire, Amblyopia and Strabismus Questionnaire, Diplopia Questionnaire, Expectations of Strabismus Surgery Questionnaire and Hospital Anxiety and Depression Scale. We then translated these measures (if not available in German). The patients filled out these forms as part of their preoperative orthoptic and ophthalmological assessment as well as approximately 3 months after strabismus surgery. RESULTS: We enrolled 59 patients in this study. Postoperative strabismus-related quality of life was higher after surgery and anxiety and depression levels were lower. Satisfaction with surgery was lower with higher postoperative angle and diplopia; the latter was also a determinant of lower postoperative quality of life. Higher expectations of strabismus surgery were present with higher depression levels and higher preoperative strabismus angle. CONCLUSION: Our data indicate that strabismus surgery may cause a significant improvement in several psychosocial domains. There is evidence that psychosocial factors can have significant impact on expectations with surgery. Hence, it is important to consider mental health aspects of this disease in order to treat patients in the best possible way.

Influence of pain on the quality of life in patients with venous ulcers: Cross-sectional association and correlation study in a brazilian primary health care lesions treatment center.

We aimed to verify the association and correlation between pain and QoL in people with VU treated in a Brazilian Primary Health Care (PHC) lesions treatment center. This is an observational, cross-sectional study with a quantitative approach, carried out in a service specialized in the treatment of chronic injuries, linked to 29 PHC units. Sociodemographic and health characterization instruments were used. The Short Form Health Survey-36 (SF-36) and Visual Analogue Pain Scale (VAPS) also were used. The Kruskal-Wallis test verified the association between the scalar variables of QoL and pain intensity. With Spearman's correlation test, we verified the level of correlation between the scales applied. A total of 103 patients participated in the study. Higher QoL scores associated with moderate pain were found, especially in the Physical role functioning, Physical functioning, and Vitality domains. Correlation analysis showed its greatest (moderate) strength in the interaction between the highest scores in the Physical role functioning and Emotional role functioning domains with the lowest pain levels.

Understanding Causes of Inferior Outcomes in Adolescents and Young Adults With Cancer.

Individuals diagnosed with cancer as adolescents and young adults (AYAs; ages 15-39 years) face unique vulnerabilities. Compared with individuals diagnosed when younger (≤14 years) or older (≥40 years), AYAs have not seen the same improvement in survival. Furthermore, they sit at a complex moment of social, emotional, and cognitive development, and have a unique interface with the healthcare system. With these observations, NCI prioritized addressing the unique vulnerabilities among AYAs with cancer, and NCCN developed guidelines regarding optimal AYA cancer care. Improvements in certain locales have been seen in the wake of this focus on AYAs, suggesting that continuing to consider AYA outcomes in the context of their specific needs is critical as we strive toward additional improvements. However, it is key to consider the drivers of these outcomes to continue this trajectory. This review presents a holistic conceptual model that includes factors that influence outcomes among AYAs with cancer, including domains in these levels that influence both clinical outcomes (such as relapse and survival) and health-related quality of life (HRQoL). These include domains at the patient level, such as social constructs (race/ethnicity, socioeconomic status), behavior (adherence, risk-taking), biologic characteristics (cancer biology, host genetics), medical treatment (treatment regimen, risk-based survivorship care), and treatment-related toxicities. The model also includes domains at the system level, which include treatment location (NCI designation, facility model, AYA program presence), clinical trial enrollment, transdisciplinary communication, fertility preservation, and psychosocial support. Recognizing these multiple factors at the level of the individual and the healthcare system influence AYA outcomes (from HRQoL to survival), it is key not only to consider patient-level interventions and development of novel cancer agents but also to develop systems-level interventions that can be executed in parallel. In this way, the impact can be expanded to a vast number of AYAs.

Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM.

BACKGROUND: Tuberous sclerosis complex (TSC) is a rare and complex genetic disorder, associated with tumor growth in various organ systems, epilepsy, and a range of neuropsychiatric manifestations including intellectual disability. With improving patient-centered care and targeted therapies, patient-reported outcome measures (PROMs) are needed to measure the impact of TSC manifestations on daily functioning. The aim of this study was to develop a TSC-specific PROM for adults that captures the impact of TSC on physical functions, mental functions, activity and participation, and the social support individuals with TSC receive, called the TSC-PROM. METHODS: COSMIN methodology was used to develop a self-reported and proxy-reported version. Development and validation consisted of the following studies: PROM development, content validity, structural validity, internal consistency, and construct validity. The International Classification of Functioning and Disability was used as a framework. Content validity was examined by a multidisciplinary expert group and cognitive interview study. Structural and construct validity, and internal consistency were examined in a large cohort, using confirmatory factor analysis, hypotheses testing, and Cronbach's alpha. RESULTS: The study resulted in an 82-item self version and 75-item proxy version of the TSC-PROM with four subscales (physical functions 18 and 19 items, mental functions 37 and 28 items, activities and participation 13 and 14 items, social support 13 items, for self version and proxy version respectively). Sufficient results were found for structural validity with sufficient unidimensionality for each subscale. With regard to construct validity, 82% of the hypotheses were met for the self version and 59% for the proxy version. The PROM showed good internal consistency (Cronbach's alpha 0.78-0.97). CONCLUSIONS: We developed a PROM for adults with TSC, named TSC-PROM, showing sufficient evidence for reliability and validity that can be used in clinical and research settings to systematically gain insight into their experiences. It is the first PROM in TSC that addresses the impact of specific TSC manifestations on functioning, providing a valuable, patient-centered addition to the current clinical outcomes.

Racial differences in long-term social, physical, and psychological health among adolescent and young adult cancer survivors.

BACKGROUND: The current guidelines for survivorship in adolescents and young adults (AYA) cancer are based on studies conducted in the United States and European AYA survivors. However, previous studies have shown that the health-related quality of life in cancer survivors can vary depending on race, yet the long-term health differences among AYA survivors by race/ethnicity have not been fully explored. Therefore, our aim is to compare the psychosocial and physical health of AYA survivors and their matched controls across different racial and ethnic groups. METHODS: We conducted a cross-sectional study using US National Health and Nutrition Examination Survey (NHANES) and the Korea NHANES from 2007 to 2018. We included AYA cancer survivors who were diagnosed with any type of cancer aged between 15 and 39 years, and who were adult with aged over 18 years old at survey year. We then stratified the study population by race/ethnicity with Non-Hispanic White (NHW, n = 310), African American (AA, n = 42), Hispanic (n = 81) from NHANES, and Asian (n = 389) from the Korea NHANES. We also selected 5 times age-, sex-, race-, and survey year-matched general population among participants who had never been diagnosed with cancer (N = 4110). Variables were defined using questionnaire data, physical exams, and laboratory tests. RESULTS: Compared to NHW, Hispanics (aOR 1.15, 95% CI 1.00-1.32) had poor or fair general health, lower education (aOR 1.23, 95% CI 1.07-1.40), and lower household income (aOR 1.16, 95% CI 1.01-1.33). AA survivors were more likely to be non-coupled (aOR 1.35, 95% 1.15-1.60) and have hypertension (aOR 1.18, 95% CI 1.03-1.36). Asians were more former/current drinkers (aOR 1.21, 95% CI 1.05-1.40). NHW are more likely to experience psychological limitation. Compared to matched general, NHW and Asian survivors had poor general health and psychological health. CONCLUSIONS: This study provides evidence for future studies concerning long-term health after AYA cancer survivorship that may vary according to race.

The effectiveness of mindfulness-based cognitive therapy for social anxiety symptoms in people living with alopecia areata: a single-group case-series design.

BACKGROUND: Alopecia areata (AA) is an immunological disorder characterised by hair loss. Individuals with AA report high levels of social anxiety. One intervention that holds potential for reducing social anxiety in individuals with AA is mindfulness-based cognitive therapy (MBCT). AIMS: Our key aim was to investigate whether MBCT reduces social anxiety in individuals with AA. The study also investigated whether MBCT reduces depression, general anxiety, and increases quality of life and increases trait mindfulness in individuals with AA. METHOD: Five participants with AA took part in an 8-session in-person MBCT intervention. A multiple-baseline single-group case series design was adopted. Idiographic measures of social anxiety were measured each day from baseline, through intervention, to follow-up. Standardised questionnaires of trait mindfulness, social anxiety, depression, anxiety, and quality of life were completed at baseline, post-intervention, and at 4-week follow-up. RESULTS: All participants completed the MBCT course, but one participant was excluded from the idiographic analysis due to a high amount of missing data. The remaining four participants demonstrated reductions in idiographic measures of social anxiety from baseline to follow-up. These effects were larger between baseline and follow-up, than between baseline and post-intervention. Two participants demonstrated significant improvement in standardised measures of wellbeing from baseline to follow-up - they also practised mindfulness most regularly at home between sessions. CONCLUSION: MBCT may be effective in reducing social anxiety and improving wellbeing in individuals with AA, although this might be dependent on the extent to which participants regularly practise mindfulness exercises.

Impact of severe mental illnesses on health-related quality of life among patients attending the Institute of Psychiatry, Rawalpindi from 2019 to 2021: A cross-sectional study.

BACKGROUND: Severe mental illnesses have huge impact on health-related quality of life. They contribute to significant morbidity in terms of number of number of years of life lost in form DALYS (disability adjusted life years) and shorter life expectancy and early mortality. There is limited evidence on their burden in low- and middle-income countries like Pakistan. OBJECTIVE: To determine the health-related quality of life in patients suffering from severe mental illness (schizophrenia, depression, and bipolar affective disorder) and demographic factors associated with poor health related quality of life in these patients. METHODOLOGY: This was descriptive cross sectional, using retrospective record view of data. Study was done under IMPACT (Improving Mental And Physical health Together) Program, which conducted a multi-morbidity survey conducted at institute of psychiatry, Benazir Bhutto hospital, Rawalpindi, using EQ 5d 5l (EURO QOL 5D5L) questionnaire having both subjective (EQVAS) and objective domains. RESULTS: The study included 922 SMI patients, of whom 555 participants (60.2%) were males and 367(39.69%) were females. The participants suffered from major depressive disorder (422;45.8%), followed by bipolar affective disorder (392; 42.51%) and schizophrenia (108;11.7%). Most participants were in a younger age group with (80%) of population being below 50 years old and had education level below secondary education (57.4%). In the analysis of association between EQ-VAS (subjective quality of life scale) and demographic factors, a significant association was found for marital status(p<0.001), gender (p< 0.001) and education (p< 0.001). Women had lower EQ-VAS scores (M = 49.43±SD = 27.72) as compared to males (M = 58.81±SD = 27.1) and individuals with lower educational status also had lower mean scores. Additionally, participants who were single, divorced or widowed also had lower mean EQVAS scores. When health related quality of life was analyzed across SMI, it was lower in all SMI, but was significantly lower for depression in both subjective and objective domains of health related of quality-of-life instrument. CONCLUSION: Health related quality of life is an important outcome measure and regular assessment of both subjective and objective aspects should be incorporated in management plans of patients suffering from severe mental illnesses.

Improving goal striving and resilience in older adults through a personalized metacognitive self-help intervention: a protocol paper.

BACKGROUND: Successful aging is often linked to individual's ability to demonstrate resilience: the maintenance or quick recovery of functional ability, well-being, and quality of life despite losses or adversity. A crucial element of resilience is behavioral adaptability, which refers to the adaptive changes in behavior in accordance with internal or external demands. Age-related degradation of executive functions can, however, lead to volition problems that compromise flexible adjustment of behavior. In contrast, the reliance on habitual control has been shown to remain relatively intact in later life and may therefore provide an expedient route to goal attainment among older adults. In the current study, we examine whether a metacognitive self-help intervention (MCSI), aimed at facilitating goal striving through the gradual automatization of efficient routines, could effectively support behavioral adaptability in favor of resilience among older adults with and without (sub-clinical) mental health problems. METHODS: This metacognitive strategy draws on principles from health and social psychology, as well as clinical psychology, and incorporates elements of established behavioral change and activation techniques from both fields. Additionally, the intervention will be tailored to personal needs and challenges, recognizing the significant diversity that exist among aging individuals. DISCUSSION: Despite some challenges that may limit the generalizability of the results, our MCSI program offers a promising means to empower older adults with tools and strategies to take control of their goals and challenges. This can promote autonomy and independent functioning, and thereby contribute to adaptability and resilience in later life. TRIAL REGISTRATION: Pre-registered, partly retrospectively. This study was pre-registered before the major part of the data was collected, created, and realized. Only a small part of the data of some participants (comprising the baseline and other pre-intervention measures), and the full dataset of the first few participants, was collected prior to registration, but it was not accessed yet. See: https://osf.io/5b9xz.

Greek Adaptation and Validation of the Bad Sobernheim Stress Questionnaire-Brace and the Bad Sobernheim Stress Questionnaire-Deformity.

Adolescent idiopathic scoliosis (AIS) is a progressive condition responsible for spinal deformity in all three planes. Spinal deformity and how the rib hump affects the aesthetics, and the functionality of the trunk can be a cause of psychological distress as well. Bracing as a treatment can have a negative impact on QoL, cause pain, affect participation levels in physical activities, and cause isolation and depression. Brace-induced stress may affect the patient's compliance with the treatment which may lead to scoliosis progression. The purpose of this study was to adapt and validate in the Greek language two instruments that can evaluate stress levels induced by bracing treatment and by deformity. The process of cross-cultural adaptation and validation of the Bad Sobernheim Stress Questionnaire-Brace (ΒSSQ-Brace) and the Bad Sobernheim Stress Questionnaire-Deformity (BSSQ-Deformity) followed the International Quality of Life Assessment Project (IQOLA) guidelines. Forty-seven AIS patients with a mean age of 14.4 ± 1.51 years, mean Cobb angle of 30.08 ± 9.25, and mean duration of the bracing treatment at 20.5 ± 12.2 months participated. The mean score for GR-BSSQ Brace was 14.04 ± 6.42, which is interpreted as medium stress, whereas the mean score for GR-BSSQ Deformity was 20.34 ± 3.78, which is interpreted as low stress. GR-BSSQ Brace demonstrated good internal consistency with Cronbach's α = 0.87. GR-BSSQ Deformity demonstrated acceptable internal consistency with Cronbach's α = 0.73. Both GR-BSSQ Brace and GR-BSSQ Deformity exhibited excellent test-retest reliability with ICC values of 0.94 (95% CI 0.89-0.97) and 0.92 (95% CI 0.86-0.95), respectively. BSSQ Brace and BSSQ Deformity questionnaires have been cross-culturally adapted into the Greek language and have been proven to be valid and reliable instruments measuring brace and deformity-induced stress. Both questionnaires can be used for clinical and research purposes in Greek-speaking population.