Social Well-being Of Patients Research Articles

Updates on the Synthetic Strategies and Structure-Activity Relationship of Anticonvulsant Benzothiazole and Benzimidazole Derivatives

Abstract: Epilepsy is a chronic neurological disorder characterized by periodic and unpredictable seizures affecting the neurobiological, psychological, cognitive, economic, and social well-being of patients. It is one of the causes of concern in developed as well as developing countries as currently marketed drugs are not capable of providing protection against it. Although several heterocyclic moieties have been frequently used as building blocks for the preparation of anticonvulsant drugs, more focused and consistent research on the synthesis of potential molecules with less adverse effects is the need of the hour. It can be concluded on the basis of available research reports that among several heterocyclic compounds, benzo-fused five-membered heterocyclic moieties (benzothiazole and benzimidazole) have been utilized far less than their great potential as building blocks for the synthesis of anticonvulsant drugs. Various reports clearly established that the required pharmacophore model could be easily achieved through benzothiazole and benzimidazole moieties as two hetero atoms and aryl rings are present in the structure. The present study highlights various synthetic approaches for anticonvulsant benzothiazole and benzimidazole derivatives with their structure-activity relationship studies in order to provide a trove of knowledge to medicinal chemists for future research.

Middle Eastern Patients with Breast Cancer and Depression: A Systematic Review and Meta-analysis

Context: Breast cancer (BC) is the most prevalent cancer diagnosed in women and the second most common cancer worldwide. Objectives: This study aimed to determine the rates of depression and identify the characteristics that put women at risk for developing depression while coping with BC in the Middle East. Evidence Acquisition: The present meta-analysis was performed by searching for keywords related to BC and depression in Middle East countries, including Egypt, Iran, Jordan, Lebanon, Pakistan, Qatar, and Turkey, in 4 main databases (PubMed, Embase, Web of Science, and Scopus) between January 2000 and November 2021. The results were analyzed using R and CMA software. Results: Fifteen English-language papers were included in this meta-analysis. The estimated prevalence of depression was 40.8% among a total of 2369 BC women, with the highest depression rate (83.9%) among Pakistani women (95% CI, 73.6 - 89.5; P = 0.000) and the lowest depression rate (27.5%) among Turkish women (95% CI, 17.2 - 40.9; P = 0.002). The women who were under treatment had higher levels of depression compared with those who were treated. Conclusions: The diagnosis of depression during a clinical treatment process can provide accurate assessments of the mental and social well-being of patients and consequently inform them about their own care. Thus, cancer treatment centers need to integrate mental illness assessment and support significant parts of the treatment plan to prevent and treat depression among BC patients.

PD05-04 THE ASSOCIATION OF SELF-REPORTED RECURRENT URINARY TRACT INFECTIONS AND HORMONALLY MEDIATED VESTIBULODYNIA

You have accessJournal of UrologyCME1 Apr 2023PD05-04 THE ASSOCIATION OF SELF-REPORTED RECURRENT URINARY TRACT INFECTIONS AND HORMONALLY MEDIATED VESTIBULODYNIA Ryan Nasseri, Valencia Henry, and Maria Uloko Ryan NasseriRyan Nasseri More articles by this author , Valencia HenryValencia Henry More articles by this author , and Maria UlokoMaria Uloko More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003229.04AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Introduction: Hormonally mediated vestibulodynia (HMV) is a very common condition affecting up to 30% of women yet is poorly diagnosed and treated. The cause of HMV is secondary to testosterone deficiency which can be caused by various things (i.e medications, menopause, breast feeding, etc) Although the primary symptoms of HMV are associated with dyspareunia, patients with HMV often have bothersome lower urinary symptoms that are often misdiagnosed as recurrent urinary tract infections (rUTI). Both conditions have profound impact on the psychological and social well-being of patients. We hypothesize that there is a correlation between patients with self-reported rUTI and HMVObjective: The purpose of this study is to assess the correlation of self-reported rUTI and HMV. METHODS: We performed a retrospective chart review of patients over a 12-month period presenting to our vulvar sexual health clinic with a primary complaint of self-reported rUTIs We defined self-reported as a history of negative urine cultures despite positive symptoms. All patients underwent a comprehensive evaluation including a detailed history, comprehensive vulvar exam including assessment of the vestibule with a Q-tip, pelvic floor assessment, comprehensive hormone labs in premenopausal women including estrogen, testosterone, SHBG, free testosterone, FSH, LH, prolactin, TSH, urine culture, and cystoscopy /renal US if indicated by the guidelines. Patients that demonstrated vestibular tenderness on exam with correlated low free testosterone or post-menopausal status were diagnosed with HMV. RESULTS: There was a total of 107 patients seen for evaluation of self-reported rUTIs. The median age was 57. 55.1% (59/107) of patients were post-menopausal and 44.9% (48/107) pre-menopausal. Of the 107 patient, 64 (60%) were diagnosed with HMV. When stratifying for menopause status, 50% of the menopausal cohort were diagnosed with HMV and 73% of the premenopausal cohort were diagnosed with HMV. The average free testosterone of the premenopausal women was 0.23 ng/dl (goal=0.8ng/dl). CONCLUSIONS: There is a high correlation between HMV and lower urinary tract symptoms. Further studies are needed to elicit if treatment of HMV can eradicate symptoms of lower urinary tract symptoms in certain demographics. Source of Funding: N/a © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e149 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Ryan Nasseri More articles by this author Valencia Henry More articles by this author Maria Uloko More articles by this author Expand All Advertisement PDF downloadLoading ...

Psychosocial services provided by licensed cardiac rehabilitation programs.

Professional health organizations recommend that outpatient cardiac rehabilitation programs include activities to optimize the physical, mental, and social well-being of patients. The study objectives were to describe among cardiac rehabilitation programs (1) mental health assessments performed; (2) psychosocial services offered; and (3) leadership's perception of barriers to psychosocial services offerings. A cross-sectional survey of North Carolina licensed outpatient cardiac rehabilitation programs on their 2018 services was conducted. Descriptive statistics were used to summarize survey responses. Thematic analysis of free text questions related to barriers to programmatic establishment or expansion of psychosocial services was performed by two team members until consensus was reached. Sixty-eight programs (89%) responded to the survey. Forty-eight programs (70%) indicated offering psychosocial services; however, a majority (73%) of programs reported not directly billing for those services. At program enrollment, mental health was assessed in 94% of programs of which 92% repeated the assessment at discharge. Depression was assessed with the 9-item Patient Health Questionnaire by a majority (75%) of programs. Psychosocial services included individual counseling (59%), counseling referrals (49%), and educational classes (29%). Directors reported lack of internal resources (92%) and patient beliefs (45%) as the top barriers to including or expanding psychosocial services at their facilities. Cardiac rehabilitation programs routinely assess mental health but lack the resources to establish or expand psychosocial services. Interventions aimed at improving patient education and reducing stigma of mental health are important public health opportunities.

Assessment of Health-Related Quality of Life of Tuberculosis Patients in Lagos State, Nigeria

Background and aims: Tuberculosis (TB) is a major public health disease threat in the world, particularly in Nigeria. The burden of TB infection could have a far-reaching effect on the psychological, physical, and social well-being of patients and consequently deterioration in their health-related quality of life (HRQOL). Accordingly, this study examined the HRQOL of TB patients in directly observed therapy (DOT) centers in Lagos State, Nigeria. Methods: The survey design was used for the study, and a total of twelve public DOT Centers were chosen as the study sites. A sample size of 310 was obtained using the Taro Yamane formula. A structured and validated questionnaire was applied to collect data. The World Health Organization Quality of Life Assessment-BREF tool was employed to assess HRQOL. Statistical analysis was conducted using SPSS software, version 23. Results: Based on the results, the overall status of the HRQOL of the studied TB patients was moderate (average weighted mean=2.48) on a 4-point scale. The finding of the study also highlighted the significant effect of TB on several domains of HRQOL. The psychological domain had the highest HRQOL score (x̅=2.60±0.64), while the environmental domain represented the lowest HRQOL score (x̅=2.31±0.63). Conclusion: Overall, the HRQOL of TB patients was at a moderate level. The disease had no negative impact on the HRQOL of TB patients across all domains. This finding calls upon strategies to ensure a healthy lifestyle and a conducive living physical environment.

Barreras y facilitadores del programa de ejercicio EfiKroniK para pacientes con enfermedad crónica en atención primaria

ObjectiveExplore patients’ perceptions during a supervised exercise program and detect the barriers and facilitators that influence exercise adherence after the supervision period. DesignA qualitative observational study with three focus groups as the main data collection technique was conducted. SitePrimary Health centers of Bizkaia. ParticipantsOut of the 175 randomized patients in the hybrid effectiveness-implementation trial, a sample of 19 patients from the intervention group were included in the qualitative study (12 advanced-stage onco-haematological patients and seven with severe mental disorders). MethodsContent analysis of the generated transcripts was performed by combining a deductive approach, based on the domains of the PRACTIS theoretical framework, and an inductive one, based on the postulates of the Grounded Theory. ResultsThe data analysis showed that participants were satisfied with the EfiKroniK program and that the main identified benefits were discovery of the benefits of physical exercise, the psychological and emotional management of the disease, the benefits from peer communication and emotional support, and the break from routine of their illness. Participants decreased the levels of physical exercise at the end of the supervision6 due to the confluence of several barriers. ConclusionA supervised exercise program carried out in Primary Care contributed to the improvement of the quality of life as well as the emotional and social well-being of patients with advanced-stage diseases. Our study identified potential barriers and facilitators associated with exercise participation and its continuity, however, it is necessary to encourage inter-sectoral coordination within the socio-health system to promote integrated and continuous care for chronic patients.

Study of Alarm Threshold for Assumed Nasogastric Tube Self-removal Action Using a Contact Sensor System.

Physical restraints negatively impact the physical, mental, and social well-being of patients. However, elderly people with dementia are often physically restrained by preventing nasogastric tube (NG tube) self-removal. This study aimed to examine alarm threshold settings limited to the actions that the subject makes contact with the NG tube out of feeling uneasy for the NG tube (assumed self-removal actions) using a contact sensor system in order to achieve non-physical restraint. In this study, subjects with experience in caring for older people with dementia were required to perform an assumed self-removal action along with 15 kinds of non-self-removal actions, while we observed the contact detection and measured the voltage. The alarm thresholds for the assumed self-removal action were examined from the ROC curve using the voltage zero time and the number of times the voltage was up and down during each action as a variable. The system presented in this study allowed us to reduce the false alarm rate from 23.3% to 8.5%. Furthermore, we used this alarm threshold to verify the data of three new subjects, observing a false alarm rate of 0.0%. Our future research would focus on investigating and evaluating elderly with dementia using the alarm threshold of the assumed self-removal action that we examined. In addition, we would use ICT to link contact detection with the nurse call system. Clinical Relevance- In this study, we examined the alarm threshold limited to the expected self-removal action using a contact sensor system. We showed that it is possible to detect the NG tube self-removal with few false alarms.

Effects of Health Care System Responsiveness On Diabetes Management Among the Patients Seeking Care at St. Mary’s Mission Hospital in Nairobi

Purpose: Diabetes is one of the non-communicable diseases (NCDs) of great global public health and development concern. This NCD has adverse effects on the social well-being of patients, their households, and the whole society. The overall objective of this study was to determine the effects of health care system responsiveness on diabetes management among the patients seeking care at St. Mary’s Mission Hospital in Nairobi.
 Methodology: This study drew on descriptive study design, involving quantitative and qualitative methods, particularly closed and open questions. The sample size was 269 respondents included in the study through purposive and convenient sampling. These sampling techniques were preferred in this research since data was gathered from the respondents during their visit to the hospital. The researcher collected data through interviewer-administered questionnaires containing both open and closed questions. Qualitative data was grouped, coded, and categorized, picking on cross-cutting issues, then compiled, analysed, and interpreted accordingly. Quantitative data was coded then entered into Statistical Package for Social Sciences (SPSS) version 22 for windows. SPSS was used to run frequency distributions and cross-tabulations for analysis and interpretation, and Microsoft Excel was used for graphical presentation.
 Findings: The study established unequal distribution of health care facilities for diabetes management across the Counties in Kenya. This leads to a late diabetes diagnosis. The respondents reported that the health care system in Kenya does not offer an affordable quality of care to diabetes patients. This makes some patients skip days or weeks without medication.
 Unique contribution to theory, practice and policy: The study recommends the hospitals to form support groups or devise other forums for patients’ education and encouragement on diabetes management. They should also look into the possibilities of having diabetes services in one building. This would ensure rapid diagnostic tests and treatment for diabetes patients.

The Quality of Life in Patients with Chronic Urticaria

Background: Chronic skin urticaria (CU) is a type of skin illness that is characterized by pruritus, angioedema, or wheals for longer than six weeks. It has a major impact on patients quality of life. Study aim: To identify the impact of chronic skin urticaria on the patients quality of life. Study setting: Erbil Dermatology Teaching Center. Study sample: One hundred and three patients, above 16 years of both sexes who were having chronic urticaria were included in the study sample. Study design: A case series research was used in this study. Study period: The study was conducted from the first of March 2021 to the end of January 2022. Data collection: All patients were interviewed by the researcher using a specially designed questionnaire sheet and the needed information was filled by the researcher. These information include age, gender, education, occupations, residence, marital status, and skin types in addition to the DLQI questionnaire which was downloaded from Cardiff University website. There are 10 questions or items in the DLQI questionnaire, which are further subdivided into six subdomains of life. Result: The score mean of DLQI was (9.3±4.37); 24 (23.3%) CU patients have a low effect, 39 (37.9%) with moderate effect and 40 (38.8%) patients have high effects. The mean DLQI score was higher among self employed patients and lower among retired patients and higher among CU patients were visiting more than two doctors and among patients who receiving treatment. Conclusion: Chronic skin urticaria has commonly moderate effect on the patients’ quality of life and affected by occupation, severity of disease, and treatment. Recommendations: This study recommended that the physician should adopt an integral plan in management of CU taking in consideration mental and social wellbeing of patients. Additionally, more national researches on the QoL of CU patients must be maintained.

Abstract 250: Psychosocial Assessment And Services Provided By Licensed Cardiac Rehabilitation Programs

Background: Professional health organizations recommend that outpatient cardiac rehabilitation (CR) programs include activities to optimize the physical, mental, and social well-being of patients. How these guidelines are being put into practice is not well known so there is a critical need to describe the real-world implementation of psychosocial guidelines in CR programs. To meet this need, the study objectives were to describe 1) mental health assessments performed and 2) psychosocial services offered among CR programs. Methods: A cross-sectional survey of North Carolina licensed outpatient CR programs was conducted. The online survey was designed to obtain descriptive information on CR personnel, assessments completed, services offered, and the patient population that is served by each program in 2018. Descriptive statistics were used to summarize mental health assessments and other closed-question responses. Standardized differences were computed to detect an imbalance in characteristics between CR programs that did and did not provide psychosocial services. Thematic analysis of free text responses to psychosocial services offered was performed by 2 team members until consensus was reached. Results: Sixty-eight programs (89%) responded to the survey. Forty-eight programs (70%) indicated offering psychosocial services. At program enrollment, mental health was assessed in 94% of programs of which 92% repeated the assessment at discharge. Depression was assessed with the 9-item Patient Health Questionnaire by a majority (75%) of programs. Health-related quality of life (QoL) instruments were used by 60 (88%) programs. Health-related QoL was assessed at program enrollment and conclusion by 95% of programs that completed this type of assessment. Psychosocial services included individual counseling (59%), counseling referrals (49%), and educational classes (29%). Conclusions: Cardiac rehabilitation programs routinely screen for psychosocial distress, a known risk factor for heart disease. CR programs can identify patients at risk for mental health problems following an MI and be a resource for connection to appropriate services.

Prediction of Genetic Disorders using Machine Learning

A genetic disorder is a health condition that is usually caused by mutations in DNA or changes in the number or overall structure of chromosomes. Several types of commonly-known diseases are related to hereditary gene mutations. Genetic testing aids patients in making important decisions in the prevention, treatment, or early detection of hereditary disorders. With increasing population, studies have shown that there has been an exponential increase in the number of genetic disorders. Genetic disorders impact not only the physical health, but also the psychological and social well-being of patients and their families. Genetic disorders have powerful effects on families. Like many chronic conditions, they may require continual attention and lack cures or treatments. Low awareness of the importance of genetic testing contributes to the increase in the incidence of hereditary disorders. Many children succumb to these disorders and it is extremely important that genetic testing be done during pregnancy. In that direction, the project aims to predict Genetic Disorder and Disorder Subclass using a Machine Learning Model trained from a medical dataset. The model being derived out of a predictor and two classifiers, shall predict the presence of genetic disorder and further specify the disorder and disorder subclass, if present.

Correlation of Psoriasis Disability Index and Psoriasis Area and Severity Index: A Study from Afghanistan.

BackgroundPsoriasis is a common skin disease that affects physical, psychological, and social well-being of patients. Several studies have assessed health-related quality of life of patients with psoriasis in different populations with large variations.ObjectiveTo investigate, for the first time, the impact of psoriasis on quality of life of Afghan patients with psoriasis.MethodsThis is a prospective observational study conducted at the dermatology department of Maiwand Teaching hospital in Kabul City during April 2018 to May 2019. Patients with plaque psoriasis with age ≥16 years were included in the study. Psoriasis Disability Index was used for the assessment of health-related quality of life. Psoriasis Area and Severity Index was used to define the severity of disease. Appropriate tests were performed using Statistical Package for Social Science.ResultsA total of 174 patients with psoriasis were included in the study, 89 of them were male (51.1%) and 85 of them were female (48.9%). The mean age of the patients was 27.7 years with 13.2 years SD, and the average duration of the disease was 3.2 years with 4.7 years SD. The mean of PASI score was 13.3 with 7.8 SD, while the mean of total PDI was 9.6 with 3.7 SD; there was a strong correlation between total PDI and PASI score (r=0.751, p<0.001). The mean of total PDI was higher among moderate-to-severe psoriasis, female patients, younger age, and those who were single.ConclusionOur study highlighted that psoriasis disability index was highly correlated with psoriasis area and severity index. Furthermore, the quality of life was more affected among female patients, patients younger than 40 years, and those patients who were single.

Keeping calm on a busy day\u2014an interpersonal skill home care patients desire in health workers: hermeneutical phenomenological method

BackgroundIn Western countries, many health and social care provisions have been transferred to primary care, and most older patients wish to remain in their own homes for as long as possible. For older patients who live alone, health workers could be their only personal contacts. Hence, health workers’ personal skills affect their relationships with these patients. Accordingly, this study aimed to shed light on the interpersonal skills needed by health workers to establish good relationships with older home care patients and highlight the importance of interpersonal skills training in nursing education.MethodsThis study adopted a hermeneutical phenomenological approach. The qualitative method was used to elicit data on patients’ perspectives. Ten home care patients were interviewed individually in their own homes between December 2019 and January 2020.ResultsDespite individual variations, health workers’ interpersonal skills are of significance with regard to the social well-being of patients living at home. The findings revealed that patients want health workers to be mentally present, congruent in their communications, calm and relaxed during the available time spent with them, and capable of facilitating autonomy.ConclusionsIt is important to present patients’ perspectives to ensure that nursing education is geared towards patients’ best interests.Trial registration numberThe Norwegian Centre for Research Data (NSD): 953937.

Patient experiences in an art-making cancer support group: A qualitative study

Background This hospital-based art-making support group for female adult cancer patients was set up in 2009. Participants meet weekly for art and craft activities, which are facilitated by a psychiatrist. The group is open-ended and participation is voluntary. There are currently around 150 participants in total. Objectives This qualitative study explores patient experiences in a hospital-based art-making support group. Methods 15 semi-structured qualitative interviews were conducted. The participants were all female, predominantly Chinese Singaporean, and had been diagnosed with either breast cancer or a gynaecological cancer. A constructivist phenomenological research paradigm was adopted. Thematic analysis was conducted to identify, analyse and report patterns in the data. Results Three overarching themes and corresponding subthemes were identified: Benefits and challenges of journeying through cancer as a group (supporting one another, maturing relationships, interpersonal conflict, death and illness in the group), increased personal well-being (increased emotional well-being, personal growth and reduced social isolation) and going beyond group-based art-making (value of non-art-making activities, artistic development beyond the group). Conclusion Our findings demonstrate that art-making support groups may enhance the emotional, psychological and social well-being of patients with cancer. The group experience has provided participants with emotional, informational and experiential support, though participants cited the need to accept interpersonal conflict and grief over fellow participants’ illness and death. Potential areas for future study include the impact of interpersonal dynamics on cancer support groups, the impact of cultural factors on participants’ interactions and the skills required of group facilitators to manage conflict, grief and anxiety amongst participants.

PATIENTS’ PERSPECTIVES, EXPERIENCES, AND CONCERNS WITH CROHN’S PERIANAL FISTULAE: INSIGHTS FROM SOCIAL MEDIA PLATFORMS

Abstract INTRODUCTION Crohn’s perianal fistulae (CPF) impact the physical, emotional, and social wellbeing of patients. Despite the high biopsychosocial burden of CPF, limited data exist regarding how patients navigate challenges associated with this complication of CD and how they perceive treatments. Social media offers a rich opportunity to gain an in-depth understanding of the impact of CPF on patients’ daily lives outside of controlled environments. In this study, we used social media to examine patients’ experiences and concerns with CPF and assess its impact on their behavior and overall wellbeing. METHODS We used a mixed-method approach to examine 119,986 publicly available posts related to CPF from 10 US CD forums between 1/1/10-1/1/20. We randomly selected 700 posts for qualitative analysis using an inductive thematic approach. A latent Dirichlet allocation probabilistic topic model was applied to explore themes in an unsupervised manner within the collection of the 119,986 posts. Fifty topics were generated and manually reviewed to identify themes, which were compared to the themes identified in the qualitative data analysis. RESULTS We distinguished 4 main themes and several subthemes that were also identified in the qualitative thematic analysis. In 38% of the posts, patients used social media to seek peer-support and information about CPF symptoms, treatments, diet, experimental therapies, natural remedies, and patients’ apprehension regarding treatments. Moreover, 30% of the posts focused on discussions surrounding the biopsychosocial burden of CPF. Patients reported pain and constant discomfort, psychological effects including stress symptoms, distress, and fear, as well as social impact on work and intimate relationships. In 21% of the posts users discussed challenges associated with CPF treatments including financial challenges, unsuccessful procedures/treatments, recurrence of CPF post-treatment, and lack of information on CPF treatments. Lastly, 15% of the posts involved patients’ experiences with medications and surgeries such as efficacy of treatments, side effects experienced and complications. While the quantitative analysis revealed an additional subtheme related to financial challenges and local and topical care, the qualitative analysis revealed an additional subtheme related to patients’ apprehension to undergo treatments (Figure 1). DISCUSSION Social media analysis reveals a dynamic range of themes governing patients’ perspectives and experiences with CPF. The use of a mixed-methods approach generated complementary insights regarding patients’ need for information about CPF, the biopsychosocial burden of CPF, the different encountered challenges with treatment and the difficulty to navigate among available management options. These results highlight a gap in patient educational needs for CPF.

PATIENTS' PERSPECTIVES, EXPERIENCES, AND CONCERNS WITH CROHN'S PERIANAL FISTULAE: INSIGHTS FROM SOCIAL MEDIA PLATFORMS

Crohn’s perianal fistulae (CPF) impact the physical, emotional, and social wellbeing of patients. Despite the high biopsychosocial burden of CPF, limited data exist regarding how patients navigate challenges associated with this complication of CD and how they perceive treatments. Social media offers a rich opportunity to gain an in-depth understanding of the impact of CPF on patients’ daily lives outside of controlled environments. In this study, we used social media to examine patients’ experiences and concerns with CPF and assess its impact on their behavior and overall wellbeing. We used a mixed-method approach to examine 119,986 publicly available posts related to CPF from 10 US CD forums between 1/1/10-1/1/20. We randomly selected 700 posts for qualitative analysis using an inductive thematic approach. A latent Dirichlet allocation probabilistic topic model was applied to explore themes in an unsupervised manner within the collection of the 119,986 posts. Fifty topics were generated and manually reviewed to identify themes, which were compared to the themes identified in the qualitative data analysis. We distinguished 4 main themes and several subthemes that were also identified in the qualitative thematic analysis. In 38% of the posts, patients used social media to seek peer-support and information about CPF symptoms, treatments, diet, experimental therapies, natural remedies, and patients’ apprehension regarding treatments. Moreover, 30% of the posts focused on discussions surrounding the biopsychosocial burden of CPF. Patients reported pain and constant discomfort, psychological effects including stress symptoms, distress, and fear, as well as social impact on work and intimate relationships. In 21% of the posts users discussed challenges associated with CPF treatments including financial challenges, unsuccessful procedures/treatments, recurrence of CPF post-treatment, and lack of information on CPF treatments. Lastly, 15% of the posts involved patients’ experiences with medications and surgeries such as efficacy of treatments, side effects experienced and complications. While the quantitative analysis revealed an additional subtheme related to financial challenges and local and topical care, the qualitative analysis revealed an additional subtheme related to patients’ apprehension to undergo treatments (Figure 1). Social media analysis reveals a dynamic range of themes governing patients’ perspectives and experiences with CPF. The use of a mixed-methods approach generated complementary insights regarding patients’ need for information about CPF, the biopsychosocial burden of CPF, the different encountered challenges with treatment and the difficulty to navigate among available management options. These results highlight a gap in patient educational needs for CPF.

Associations between inflammatory bowel disease, social isolation, and mortality: evidence from a longitudinal cohort study.

Background:Social well-being of patients with inflammatory bowel disease (IBD) is garnering increased attention; however, the impact of social isolation remained poorly understood.Objectives:We investigated the joint association of social isolation and IBD with premature deaths to articulate the profound impact of social isolation in IBD prognosis.Design:Longitudinal cohort study.Methods:We leveraged data of 486,014 participants from UK Biobank (including 5791 with IBD), the mean follow-up was 11.84 years. Diagnoses of IBD and its subtypes of Crohn’s disease (CD) and ulcerative colitis were confirmed with the combination of self-reporting, primary care, and hospital admission data. Social isolation was measured by the frequency of meeting family/friends, leisure and social activity, and communal/solitary living. Mortality was ascertained through data linkage with national death registries. Multivariable Cox regression models were conducted to estimate hazard ratio (HR) and 95% confidence interval (CI).Results:Comparing non-isolated non-IBD population, the HRs of mortality in patients with IBD who were socially isolated or not were 2.06 (95% CI: 1.69, 2.51) and 1.33 (95% CI: 1.21, 1.45), respectively. The excess risk of death was observed in socially isolated patients with IBD (HR = 1.69, 95% CI: 1.36, 2.11), particularly among patients with CD (HR = 2.06, 95% CI: 1.48, 2.87) than their non-isolated counterparts. Data from subgroup and sensitivity analyses were consistent with those from the primary analysis.Conclusion:Socially isolated patients with IBD especially CD increases the risk of premature death. Preventing social isolation might be a promising approach to improve IBD prognosis.Plain language summary Social isolation as a risk factor to excess mortality in patients with IBD: findings from a longitudinal cohort study Social isolation is prevalent in individuals with inflammatory bowel disease (IBD); however, its potential health impact on IBD prognosis has not been quantitatively well examined. In this study, we explored the association between social isolation and subsequent death, with the focus on patients with IBD.We leveraged data of 486,014 participants (including 5791 with IBD) from UK Biobank. We measured social isolation by the frequency of meeting family/friends, leisure and social activity, and communal/solitary living. We ascertained patients with IBD and mortality by self-report data and data linkage with primary care, hospital, and national death registry. Participants were followed up for a mean of 11.84 years.Comparing non-isolated non-IBD population, we found that patients with IBD who were deemed as socially isolated or not were associated with a 2.06-fold (1.69–2.51) and 1.33-fold (1.21–1.45) risk of death, respectively. Furthermore, we revealed that socially isolated patients with IBD and subtype Crohn’s disease (CD) had 69% (36–111%) and 106% (48–187%) increased risk of premature death compared with their non-isolated counterparts, respectively.Social isolation merits attention in IBD care and management. Patients with IBD, especially CD, are more likely to be affected when socially isolated. Targeted social support strategies ought to be devised to improve IBD prognosis.

A qualitative exploration of the impact of ovarian cancer on the well-being of women: evaluating the intersection and influences of social determinants of health

<h3>Objectives:</h3> Women with ovarian cancer (OC) may experience long-term financial burdens due to ongoing effects of disease and treatment. We qualitatively explored the interplay of social determinants of health such as economic stability, access to health care, and the social and community context in the lives of OC survivors. <h3>Methods:</h3> Participants were recruited by purposive sampling for semi-structured interviews. Interviews were audio-recorded, transcribed verbatim and coded. Framework analyses guided content analysis using ATLASti.V8. <h3>Results:</h3> 40 women with recurrent OC completed interviews between Dec. 2017 and Nov. 2018 (Table 1). Median age was 59.3 yrs (range 32.1-77.6). Median time from diagnosis was 44.7 months. A dominant theme was economic instability due to loss of financial independence or increased debt from care. On not working, a patient stated: "It affects everything you do, every part of your life. You worry. You know, it's like, ‘Am I gonna be homeless with cancer?' ‘Am I gonna be without heat with cancer?' ‘Am I gonna have enough food?'" Modifications of spending on food was common. "Even at the grocery store, cutting out the … food … just the junk food, I would call it. Cutting that out and, you know, changing the way I cook. A lot of, you know, pasta dishes, rice. things that have maybe a little meat in them. You know, some little chopped chicken, but just make even the chicken stretch, you know." High co-pays and insurance coverage were structural barriers directly impacting care. Some chose to cancel appointments due to prohibitive costs. "… I cancelled my scans in April, where I'm going every four months instead. Since I have to pay so much for the scans, I think three a year is going to be a little more manageable than four a year." Impacts from economic instability on the social well-being of patients were striking. "When I did not work. the first three to four months seemed like it was okay.and then after that, it got to be extremely depressing. I felt like I was not a participant of society". Eliminating social activities to manage costs was common. ". We used to go to festivals and stuff on the weekends. We used to go out to eat. We don't do any of that anymore. The money just isn't there for that." Another stated, "… my granddaughter, used to like to go to the football games. I can't take her to those. We don't go to the movies. We just sit home and do nothing. I try to keep her entertained by, you know, playing little games with her and stuff like that, but otherwise we don't do anything." Another explained, "we've cut out, well, things we used to do. You know, like going out to eat and just going out with friends, and we used to have a 4th of July party every year. We live out in the country and we would have fireworks and … invite friends and family and we've quit doing that. We haven't done that since I've been diagnosed with cancer, but we haven't borrowed any money. We've just quit doing things that we always enjoyed doing." <h3>Conclusions:</h3> Social determinants of health influence well-being of patients. In this qualitative study we found that economic instability and structural barriers negatively impacted both social well-being and access to care for some women with recurrent OC. We identified a striking theme of social isolation resulting from economic factors across the spectrum of annual income. Further understanding of these impacts can help inform interventions to enhance the overall welfare of patients and their families.

A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

BackgroundPrimary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated. This qualitative study investigated the impact of pHLH and its treatment on the physical, emotional, and social well-being of patients and caregivers in the USA and UK using interviews to provide a comprehensive insight from the perspective of the caregivers and young survivors.ResultsTwenty-one caregivers were enrolled (median [range] age, 41.1 [26–58] years) and represented 20 patients, four from the UK and 16 from the USA. At enrollment, 17 of the 20 patients were alive with a median [range] age of 12.75 [5–31] years at a mean [range] of 7.8 [0.6–11.6] years after diagnosis. In addition, four adult survivors (median [range] age, 23.3 [21–30] years) were also enrolled (total participants n = 25). From noticing initial symptoms to receiving a diagnosis, caregivers reported a mean (range) of 25.9 (0–258) months. pHLH and its treatment had a substantial and long-lasting impact on patients and caregivers, affecting their physical, emotional and social well-being, family relationships, friendships, and ability to work and study. Many of the experiences reported were negative, even after curative treatment, and some participants experienced long-lasting physical and emotional issues. The most noticeable impact of pHLH for patients was on their physical well-being, whereas for caregivers it was emotional well-being. Across all participants there was a sense of isolation due to the illness and its treatment, particularly regarding the patient being immunocompromised and the fear of infection. Areas having a major impact and considered in need of improvement included: delays in diagnosis, lack of patient-specific information on pHLH and a lack of support and understanding about the condition.ConclusionspHLH placed a substantial burden on patients and caregivers, which for some were long-lasting. This was compounded by the lack of awareness and understanding of pHLH by healthcare professionals, and a lack of accessible information for those affected by pHLH.

HEMODİYALİZ TEDAVİSİ ALAN HASTA BİREYLERİN KİŞİLER ARASI TARZ VE SOSYAL İYİ OLMA DÜZEYLERİNİN DEĞERLENDİRİLMESİ

Bu çalışma hemodiyaliz tedavisi alan hastaların kişiler arası tarz ve sosyal iyi olma düzeylerinin değerlendirilmesi amacıyla yapılmıştır. Tanımlayıcı kesitsel nitelikteki araştırma, 18.10.2019-10.01.2020 tarihleri arasında bir kamu hastanesinin Hemodiyaliz Ünitesi’nde hemodiyaliz tedavisi alan ve araştırmaya katılmayı kabul eden 69 hasta ile gerçekleştirilmiştir. Veriler; Kişisel Bilgi Formu, Kişiler arası Tarz Ölçeği (KTÖ) ve Sosyal İyi Olma Ölçeği (SİOÖ) kullanılarak toplanmıştır. Veriler; ortalama, standart sapma, frekans, Student t-test, Tek Yönlü ANOVA ve Pearson Korelasyon Analizi ile değerlendirilmiştir. Hasta bireylerin KTÖ toplam puan ortalaması 128.65±29.9 ve SİOÖ toplam puan ortalaması 53.72±14.48’dir. KTÖ; kaçınan, öfkeli ve alaycı tarz alt boyut puan ortalamaları arasında yaş durumuna göre istatistiksel olarak anlamlı fark vardır (p&amp;lt;0.05). SİOÖ ile KTÖ öfkeli tarz alt boyut puanları arasında negatif yönde istatistiksel olarak anlamlı ilişki vardır (p&amp;lt;0.05). Bu sonuçlar doğrultusunda son dönem böbrek yetmezliği olan, hemodiyaliz tedavisi alan ve özellikle genç yaşta olan bireylerin daha çok olumsuz kişilerarası tarz sergiledikleri ve sosyal iyi olma düzeyi düşük olan bireylerin ise kişilerarası tarz olarak öfkeli tarzı benimsedikleri bulunmuştur.