Emotional Well-being Of Patients Research Articles

Palliative care considerations for the older adults with HIV/AIDS: a clinical practice review.

Human immunodeficiency virus (HIV) has historically been viewed as a terminal condition affecting younger populations, however, with advancements in antiretroviral therapy (ART) and better healthcare provisions, people with HIV are now living longer than ever before. This shift has highlighted the need to readdress the end-of-life care needs of patients aging with HIV. People aging with HIV face a double burden. Aging itself comes with an array of health challenges, including cognitive decline, frailty, and increased susceptibility to chronic illnesses. Despite effective management with ART, HIV is associated with ongoing inflammation, and may accelerate aging processes, increasing the risk of certain cancers and comorbidities, as well as an increased risk of cardiovascular disease. The stigma surrounding HIV, though diminished over the years, still lingers. People living with HIV have experienced decades of intersecting stigmatized identities in the context of social isolation, leading to potential psychological challenges like depression, anxiety, and loneliness, all of which may be amplified by aging. Addressing these emotional and social needs is as crucial as managing their physical health. The integration of primary palliative care into geriatric practice is crucial, as it improves the quality of life for older patients with chronic illnesses, lifelimiting conditions. This is particularly relevant for aging individuals with HIV, who often face complex medical needs and multiple comorbidities. Primary palliative care is the basic, integrated palliative care support provided by non-specialists as part of routine care, while specialist palliative care involves more complex and specialized support from a team with specific training in palliative care. Incorporating palliative care principles enables geriatric healthcare providers to address these comprehensive needs more effectively. This approach encompasses not only physical symptom management but also the emotional well-being of patients. It aids in advanced care planning and decision-making that resonate with the patients' values and goals. Ultimately, this integrated approach leads to improved patient outcomes and a higher quality of care. This review delves into the unique considerations and challenges of providing palliative care to people aging with HIV, recognizing the interplay of age and HIV in the era of modern ART.

Alexithymia in primary ciliary dyskinesia.

Recent evidence suggests that alexithymic deficits in emotional processing may also affect physical health, and alexithymia may also be associated with organic disorders. The emotional well-being of patients with primary ciliary dyskinesia (PCD) is often negatively affected by uncertainty about the prognosis, lack of ongoing medical care, and lack of symptom control. This study aims to evaluate the frequency of alexithymia and its possible impact on the management of childhood PCD. Subjects were recruited from patients with PCD and healthy volunteers aged 8-18 years. The questionnaire included sociodemographic characteristics and self-report scales. Data were compared between patient and control groups. In the >14 years of age group, the total Toronto Alexithymia Scale (TAS-20) score was significantly higher in the patients (56.60 ± 13.01) compared to the control group (46.47 ± 7.50) (p = .007). There were 6 (30) patients with a TAS-20 score ≥61. There was a significant correlation between TAS-20 and Pediatric Quality of Life (PedsQL) score (child), but no correlation between TAS-20 and Kovacs Children Depression Inventory (CDI) and PedsQL score (parents). The TAS-20 score was significantly higher in patients with bronchiectasis (p = .035), nasal polyps (p = .045), and siblings with PCD (p = .001). Furthermore, the TAS-20 score had a significant negative correlation with pulmonary function tests. Although this study is based on limited data from a single center and cannot be generalized to all PCD patient communities, our results show that PCD patients are more likely to have alexithymia compared to healthy controls and highlight the need to evaluate for alexithymia in patients with PCD. It is important for pediatric pulmonologists to have a thorough knowledge of the alexithymic features associated with PCD and to refer patients to pediatric psychiatry when necessary, especially in patients who are noncompliant with treatment protocols.

Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey: Perspectives of adolescent and adult patients, caregivers, and healthcare professionals on the burden of sickle cell disease.

Sickle cell disease (SCD) is an inherited disorder that causes lifelong complications, substantially impacting the physical and emotional well-being of patients and their caregivers. Studies investigating the effects of SCD on quality of life (QOL) are often limited to individual countries, lack SCD-specific QOL questionnaires, and exclude the caregiver experience. The SHAPE survey aimed to broaden the understanding of the global burden of SCD on patients and their caregivers and to capture the viewpoint of healthcare providers (HCPs). A total of 919 patients, 207 caregivers, and 219 HCPs from 10, 9, and 8 countries, respectively, answered a series of closed-ended questions about their experiences with SCD. The symptoms most frequently reported by patients were fatigue/tiredness (84%) and pain/vaso-occlusive crises (71%). Patients' fatigue/tiredness had one of the greatest impacts on both patients' and caregivers' QOL. On average, patients and caregivers reported missing 7.5 days and 5.0 days per month, respectively, of school or work. HCPs reported a need for effective tools to treat fatigue/tiredness and a desire for more support to educate patients on long-term SCD-related health risks. The multifaceted challenges identified using the SHAPE survey highlight the global need to improve both patient and caregiver QOL.

Stem cells and diabetes: Compassionate care with comfort, a humanized reflection

The aim was to analyze the role of stem cells in Diabetes Mellitus, adopting the humanized perspective of Kolcaba's Comfort Theory. The methodology used a reflexive approach, reviewing literature on platforms such as Google Scholar and PubMed. The results highlighted the capacity of stem cells in tissue regeneration in DM1, offering a promising vision. The scientific evidence revealed the versatility of stem cells, not only in insulin replacement, but also in differentiation into various cell lineages, broadening the therapeutic spectrum. The discussion addressed challenges including heterogeneity in individual responses, optimization of cell differentiation and ethical issues. The Comfort Theory enriched the analysis by highlighting the importance of compassionate care, promoting humanized practices and considering emotional dimensions. In stem cell transplantation, attention to the patient's emotional well-being, psychological support and effective communication were crucial. Methodological limitations were acknowledged, suggesting more in-depth approaches in future research, and practical implications were highlighted, proposing the integration of Comfort Theory into the therapeutic approach to optimize care for patients with Diabetes Mellitus.

Network analysis to examine sex differences linked to emotional well-being in cardiovascular disease.

Psychosocial dimensions are essential to guarantee an optimal approach to improve emotional well-being in patients with cardiovascular disease (CVD). There is evidence of sex differences regarding these dimensions. Thus, the connections between them are crucial to implement personalized therapies. Network model analyses were conducted on data from 593 CVD patients. The models included scores from the Hospital Anxiety and Depression Scale (HADS), positive (PA) and negative affect (NA), positivity (PS), satisfaction of life (SLS), social support (SS), self-efficacy on emotion regulation (RESE), cardiac self-efficacy (CSE) and the Short Form-12 Health Survey. The main sex differences were found in: PA-PS (p = 0.03), SS-RESE (p = 0.04), for which the positive associations are stronger for men than for women and PA-RESE (p < 0.01) for which the positive association is stronger for women than for men. These nuances should be considered to implement tailored and integrative therapies for each CVD patient.

The Effect of Clay Therapy on The Quality of Life of Pediatric Oncology Patients

Some interventions in pediatric oncology care for pediatric patients, such as art therapy and play therapy, ensure the physical and emotional well-being of patients. It also has the potential to improve quality of life during treatment and at the end of life. We aimed to determine the effect of clay therapy on the quality of life of pediatric oncology patients. This study was conducted with nine children (intervention group/clay therapy) inpatients in haematology units and nine children (comparison group). The “KINDL Quality of Life Scale” was used. The children participated for eight weeks in clay applications for two days a week. The post-test (69.66±15.70) of the KINDL Quality of Life Scale total mean score of the children in the intervention group was higher than the pre-test (57.00±10.54) (Z = 2.670; p = 0.008). There were no significant differences between the pre-test (74.66±5.97) and the post-test (74.55±6.94) of the quality of life of the children in the comparison group (Z = 0.005; p = 0.755). Clay therapy should be included in nursing care interventions to increase the quality of life for pediatric oncology patients. To increase quality of life, especially in pediatric oncology patients, it is suggested that environments be formed in hospitals where clay therapy can be applied. .

Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) Survey: Findings on the Burden of Sickle Cell Disease and Impact on the Quality of Life of Patients and Caregivers in Gulf Cooperation Council Countries

Introduction: Sickle cell disease (SCD) is an inherited disorder that adversely impacts the physical and emotional well-being of patients and caregivers, yet research on the impact of SCD on quality of life (QoL) is limited. In a systematic review the prevalence of SCD in Gulf Cooperation Council (GCC) countries ranged 0.24-5.8% (Abu-Shaheen et al. Expert Rev Hematol 2022). The 3 countries with the highest prevalence were Bahrain (1.2-2.1%, 2 studies), Saudi Arabia (0.24-4.5%, 15 studies), and Oman (5.8%, 1 study). The Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey aimed to improve our understanding of the global burden of SCD. This analysis reports the experiences of patients with SCD and caregivers in GCC countries who participated in the SHAPE survey within the context of insights obtained globally. Methods: The SHAPE survey included patients and caregivers from Brazil, Canada, France, Germany, the UK, the US, and 4 countries in the GCC (Bahrain, Oman [patients only], Saudi Arabia, and the United Arab Emirates [UAE]). Participants completed a 12-minute face-to-face survey (GCC only) or online survey (other countries) comprising close-ended questions about their experiences with SCD. Patients with SCD aged ≥12 years and caregivers aged ≥18 years supporting a patient with SCD were eligible. Results: Of 919 patients and 207 caregivers globally who responded, 150 patients (16.3%; Saudi Arabia n=70, the UAE n=46, Bahrain n=19, and Oman n=15) and 50 caregivers (24.2%; Saudi Arabia n=25, the UAE n=17, and Bahrain n=8) were from GCC countries (Table). Symptoms experienced most frequently by patients in GCC countries and all surveyed patients, respectively, were fatigue/tiredness (91% vs 84%), bone aches (91% vs 69%), and vaso-occlusive crisis (VOC) pain (81% vs 71%). Compared with all surveyed patients, a significantly greater proportion of patients in GCC countries experienced fatigue/tiredness, bones aches, VOC pain, generalized pain, and signs of organ damage (Figure). Symptoms reported by a significantly smaller proportion of patients in GCC countries than by all surveyed patients were poor sleep/insomnia, poor appetite, memory/concentration issues, nausea, yellow eyes/nails/skin, vision difficulties/retinopathy, and leg ulcers. The top 3 symptoms patients in GCC countries reported as being most impactful in terms of the following categories were: (i) relationships/potential relationships (25% VOC pain, 19% low mood/feeling depressed, 16% bone aches); (ii) family (30% VOC pain, 12% bone aches, 11% low mood/feeling depressed); and (iii) long-term health prospects (29% bone aches, 23% VOC pain, 21% signs of organ damage). The average number of missed school/work days in the past month for patients was 3.9 in GCC countries and 7.5 globally. A smaller proportion of patients in GCC countries were optimistic about their future compared with all surveyed patients (35% vs 52%). The biggest concerns of caregivers of individuals with SCD were worsening of symptoms (54% in GCC countries vs 17% globally) and early loss of life (34% vs 39%). Approximately half of caregivers agreed that caring for a person with SCD had a big or noticeable impact on their family (52% in GCC countries vs 50% globally). The majority of caregivers agreed they were well-equipped to care for someone with SCD (80% in GCC countries vs 72% globally). A smaller proportion of caregivers in GCC countries were optimistic about the future of the person they care for with SCD compared with all surveyed caregivers (32% vs 62%). Conclusions: Findings from the SHAPE survey highlight the physical and emotional burden of SCD on patients and caregivers in GCC countries. Patients in GCC countries reported VOC pain, bone aches, and low mood/feeling depressed as symptoms that most affected their relationships/potential relationships and family. Caregivers in GCC countries expressed concerns about early loss of life and worsening SCD symptoms. Overall, these findings underline the need for effective treatments that alleviate symptoms and manage disease sequalae, and for additional resources to improve the QoL of patients and caregivers.

Health-related quality of life among adults newly diagnosed with pulmonary tuberculosis in Lagos State, Nigeria: a prospective study.

Tuberculosis (TB) has far-reaching effects on the social, mental, and emotional well-being of patients and consequently, their health-related quality of life (HRQOL). Few studies in Nigeria have examined changes in quality of life over the course of treatment. changes in (PTB) and factors associated with HRQOL. A prospective cohort study was conducted with patients recruited from health facilities in Lagos State. The World Health Organization Quality of Life Instrument, Short-Form (WHOQOL-BREF) was used to assess HRQOL. A semi-structured questionnaire was also administered to elicit information on socio-demographic characteristics and the medical and social history of the respondents. Data were analysed using Statistical Package for the Social Sciences (SPSS) version 23. A repeated measures analysis of variance (ANOVA) test with polynomial contrasts was used to assess how domain scores varied over time. Multivariable analysis was conducted using generalized estimating equations (GEE) to assess change in HRQOL and its predictors. Two hundred and ten patients, predominantly male [108 (63.3%)] were recruited. The mean age was 36.7 ± 12.3years. The HRQOL was impaired in all four domains at baseline. However, HRQOL scores increased over the treatment period with the largest improvement being in the 'environment' domain, where mean scores increased from 45.27 ± 14.59 to 61.28 ± 15.86. The proportion of respondents that expressed satisfaction with their health increased from 13.5% at baseline to 55.7% at the end of treatment. Low socio-economic status, delay in presentation, and an HIV-positive status were found to be significantly associated with reduced HRQOL at baseline (p < 0.05). In the multivariable longitudinal analysis, patients who were employed had higher HRQOL scores while persistent symptoms and a delay in presentation (≥ 4weeks) were negatively associated with change in HRQOL scores over the course of treatment. The HRQOL of respondents progressively improved over the six-month treatment period. However, change in HRQOL was influenced by a delay in presentation and persistence of symptoms. The study also highlights the need for increased recognition of patient-reported outcomes as an adjunct outcome measure.

Impact of Mental State on the Severity of Psoriasis Symptoms: A Study on Patient's Emotional Well-Being.

BACKGROUND Psoriasis is a chronic systemic skin disease affecting approximately 2% of the global population. In addition to the characteristic inflammatory changes on the skin, patients with psoriasis often experience comorbidities, including depressive symptoms and anxiety. This study aimed to investigate the relationship between the course of psoriasis and the mental state of patients. MATERIAL AND METHODS The study was conducted among 70 patients with psoriasis. An interview was conducted to assess the course of psoriasis. The Beck Depression Inventory (BDI) and Hospital Anxiety and Depression Scale (HADS) were used. CRP concentration as well as VAS, NRS, and PASI scales were measured. The results were subjected to statistical analysis. RESULTS Psoriasis was severe in 50% of the patients. Most (52.8%) of patients had moderate pruritis (VAS) and 58.5% had moderate pain (NRS). Moderate depressive symptoms (BDI) were present in 60% of patients, 18.6% had pathological anxiety (HADS-A), and 18.6% had pathological depression (HADS-D). CRP levels were significantly associated with PASI, VAS, and NRS. CONCLUSIONS The mental state of the patient plays an essential role in the course of psoriasis, and negative emotions affect the severity of skin symptoms. Emotional stress to patients with psoriasis should be limited, which will undoubtedly contribute to overall improvement of health.

Reconstruction of the Mammary Gland: Breast Implants versus Autologous Tissues in Breast Cancer

Breast reconstruction is an essential component of breast cancer management, aiming to restore the physical appearance and emotional well-being of patients who have undergone mastectomy or lumpectomy. Two primary approaches, implant-based reconstruction and autologous tissue reconstruction, offer distinct advantages and considerations. Implant-based reconstruction involves the use of silicone or saline breast implants, offering a less invasive surgical procedure and shorter recovery time. However, potential complications, such as implant malposition and capsular contracture, should be carefully considered. Autologous tissue reconstruction utilizes the patient's own tissues to reconstruct the breast, providing a more natural outcome. While this method may involve a more complex surgery and longer recovery time, it avoids the use of foreign materials. The choice between these approaches is multifaceted and involves patient preferences, anatomical considerations, previous treatments, and overall health status. Shared decision-making between patients and healthcare professionals is crucial to achieving patient satisfaction and optimal outcomes. Breast reconstruction plays a significant role in supporting breast cancer survivors on their journey towards physical and emotional healing, empowering them to embrace their new identity and regain a positive body image. Continued research and advancements in breast reconstruction techniques hold promise for further improving patient outcomes and enhancing quality of life.

Treatment options and emotional well-being in patients with rosacea: An unsupervised machine learning analysis of over 200,000 posts

Many patients with rosacea join online support groups to gather and disseminate information about disease management and provide emotional support for others. To better understand rosacea patient's primary concerns for the disease as well as their disease search patterns online. Overall, 207,038 posts by 41,400 users were collected from June 1, 2017, to June 1, 2022, in a popular online forum. We applied Latent Dirichlet Allocation (LDA), an unsupervised machine learning model, to organize the posts into topics. Keywords for each topic supplied by LDA were used to manually assign topic and category labels. Twenty-three significant topics of conversation were identified and organized into 4 major categories, including Management (50.33%), Clinical Presentation (24.14%), Emotion (21.97%), and Information Appraisal (3.57%). Although we analyzed the largest forum on the internet for rosacea, generalizability is limited given the presence of other smaller forums and the skewed demographics of forum users. Social media forums play an important role for disease discussion and emotional venting. Although rosacea management was the most frequently discussed topic, emotional posting was a significantly prevalent occurrence.

Dental anxiety and oral health-related quality of life before and after non-surgical periodontal treatment.

To (1) investigate dental anxiety (DA) and oral health-related quality of life (OHRQOL) before and after non-surgical periodontal treatment (NSPT) and (2) determine correlations between these patient-reported measures. Demographics, smoking habits, dental pain, Modified Corah's Dental Anxiety Scale (MDAS), and Oral Health Impact Profile (OHIP-14) were assessed in eighty-two participants. Mean age was 48.3years ± 11.5. At baseline, 8.5% reported being active smokers. Of non-smokers, 11% reported being an ex-smoker. After NSPT, 11.0% reported smoking. Patients' maximal pain in the last month decreased after therapy. Before treatment, participants reported higher DA. Extreme DA was observed in 8.5% of participants before therapy. Afterwards, 2.4% of participants reported extreme DA. Fear of having a foreign object in the mouth decreased after NSPT. All OHIP-14 scores, except functional limitation, improved post-treatment. Higher DA was associated with worse OHRQoL before treatment. After treatment, total MDAS score was associated with OHIP-14 global score, physical pain, psychological disability, and social disability. Worse MDAS sub-scores were associated with a higher OHIP-14 global score. Individuals with "normal/slight anxiety" had a significant improvement in OHRQoL, whereas people in the "moderate and extreme anxiety" group did not report a significant improvement. Patients diagnosed with generalized periodontitis (GP) stage III grade B and GP stage IV grade B reported less anxiety after NSPT. Associations of MDAS subcategories with OHIP-14 domain scores were found before and after therapy. DA decreases and OHRQoL enhances after NSPT in patients with "normal/slight" anxiety to dental treatment. Dental practitioners should plan strategies to cope with anxiety to dental treatment and prevent decreases in OHRQoL. Within the limitations of this study, DA and OHRQoL were positively correlated in patients with periodontitis, before and after NSPT, using the MDAS and OHIP-14 questionnaires. The results of our study suggest that treatment is effective in terms of alleviating DA and improving oral health, along with quality of life, in patients that report "normal/slight" anxiety to dental treatment. Nonetheless, results must be interpreted with caution since patients are generally anxious before any type of dental treatment. DA may not just be confined to NSPT per se. According to our results, evaluation of both outcomes should be an integral part of routine periodontal clinical evaluation and periodontal reevaluation of initial therapy. It is important that clinicians learn to identify patients that suffer from anxiety and take time to explain the treatment procedures to the patient, to strive for patient's emotional well-being before, during, and after dental care services. The use of specific questionnaires for both DA and OHRQoL may be more appropriate to demonstrate the psychological and quality of life differences due to periodontal disease and NSPT.

The impacts of visual comfort on pediatric oncology intensive care units

Abstract Patient's discomfort in hospital Intensive Care Units (ICUs) regarding infrastructure, the lack of natural light and complementary artificial light, as well as colours found in these environments are important humanization concerns directly affecting the physical and emotional well-being of patients, caregivers and the multidisciplinary team, especially in paediatric oncology ICUS, which are stressful environments. This paper sought to answer relevant questions about visual comfort and traces of stress experienced by caregivers and a multidisciplinary team in a paediatric oncology ICU. For this purpose, a Visual Comfort Questionnaire and a Lipp’s Stress Symptoms Inventory were applied to obtain participants´ feedback at a [hospital] in Brazil. The results showed that caregivers and employees pointed out the need to have more windows in the environment, addressing the importance of natural light for physical and emotional well-being. Based on this, a significant number of employees and companions associate stress to the everyday life in the ICU, which occurred mainly in the intermediate (resistance) or final (exhaustion) phases, according to the Lipp scale. These results showed the importance of a broader approach to hospital humanization.

Analysis of the influential factors of the emotional health of patients with cancer based on the structural equation model: the role of social media and emotional support.

To explore the mental health status of patients with cancer and related influential factors and provide a scientific basis to reduce serious emotional problems, improve the quality of life of cancer survivors and adopt targeted interventions. A total of 517 patients who attended the oncology departments of six grade-A tertiary hospitals from July 2022 to September 2022 were selected by convenience sampling. The effects of emotional support, social media, patient-centred communication, health self-efficacy and cancer beliefs on the emotional well-being of patients with cancer were analysed based on the structural equation model. A Spearman correlation analysis showed a significant positive correlation among the six latent variables (P<0.01). The structural equation model path analysis showed that health self-efficacy (β=0.374, P<0.001), cancer belief (β=0.214, P=0.003) and emotional support (β=0.104, P=0.031) all had positive effects on emotional health. The mediating effect results showed that cancer beliefs had a mediating effect on mental health in social media use (β=0.106, P=0.001), emotional support (β=0.028, P=0.002) and patient-centred communication (β=0.050, P=0.002). Further, health self-efficacy had mediating effects on mental health in emotional support (β=0.084, P=0.001) and patient-centred communication (β=0.098, P=0.001). By constructing structural equation models, this study found that emotional support, cancer beliefs and health self-efficacy showed a positive effect on the emotional well-being of patients with cancer. Further, it found a mediating role of health cancer beliefs on the impact of emotional support, social media use and patient-centred communication on mental health. Additionally, health self-efficacy has a mediating role regarding the effects of emotional support and patient-centred communication on mental health.

A qualitative study exploring the lived experiences of patients living with mild, moderate and severe frailty, following hip fracture surgery and hospitalisation.

It is well recognised that hip fracture surgery is associated with a negative impact on short and long-term post-operative physical health and emotional well-being for patients. Furthermore, these patients are known to be frail with multiple co-morbidities. This study explores how frailty shapes the lived experiences of rehabilitation and recovery for patients who have undergone hip fracture surgery. Semi-structured interviews were conducted with sixteen participants, recently discharged from hospital following hip fracture surgery. Interpretative phenomenological analysis was applied to explore the lived experiences of frail patients and ascertain important themes. Patient experiences were captured in seven overarching themes: 1) the hospital as a place of "safety", 2) placing trust in others, 3) the slow recovery journey impeded by attitude and support, 4) maintaining autonomy and dignity whilst feeling vulnerable, 5) seeking a new normal, 6) loneliness and social isolation and 7) the ageing body. Based on our study findings, we have been able to suggest a number of opportunities to improve support for frailer patients in finding a new routine to their everyday lives, these include on-going physical and psychological support, information and education and a robust pathway for transition of care into the community. A conceptual thematic diagram is presented which helps to understand the experience and the complex needs of frail older people undergoing hip fracture surgery.

Treatment of perianal fistulas in Crohn’s disease - review of literature and current recommendations

Introduction: Crohn's disease is an idiopathic inflammatory disorder of unknown etiology, associated with genetic, immunological, and environmental factors. The incidence of this disease continues to rise in developed countries. In almost 25% of patients, perianal fistulas occur during the course of the disease, which are difficult to treat and significantly impair the patient's quality of life.&#x0D; Aim of the study: To summarize the current state of knowledge on the treatment of Crohn's disease with perianal fistulas, with a particular focus on biological therapies and stem cell treatments.&#x0D; Methods and Materials: A systemic review was conducted using PubMed, Google Scholar, and ScienceDirect databases and it was limited to studies published in last 5 years. The search strategy was based on following terms: "Crohn's disease", "perianal fistula", "biological treatment", and "inflammatory bowel disease".&#x0D; Results: In recent years, there has been intensive research into new treatment options for perianal fistulas in Crohn's disease. Infliximab remains the first-line therapy, best controlled by monitoring the drug concentration in the serum. Alternatively, other drugs such as ustekinumab and vedolizumab may be considered. The combination of biological and surgical treatment is a recognized standard of care and modern, minimally invasive techniques that preserve sphincters, such as the FiLaC™ laser procedure, are increasingly being used. A novel and very promising therapeutic approach is based on mesenchymal stem cells, which may offer hope for patients who do not improve with standard treatment.&#x0D; Conclusion: Perianal disease in patients with Crohn's disease poses a significant therapeutic challenge and has a substantial negative impact on the physical and emotional well-being of patients. Despite the existence of various therapeutic options, a certain percentage of patients still fails to achieve clinical remission. Further research into new therapies is necessary.

P121 Real world effectiveness of Digital Therapeutics on quality of life and emotional wellbeing amongst patients with Rheumatoid Arthritis

Abstract Background/Aims Rheumatoid arthritis (RA) is a systemic chronic autoimmune disease. It presents as an inflammatory arthritis with varying severity and symptoms like joint pain, joint stiffness, fatigue, sleep disturbances, dryness, etc reducing the quality of life (QoL).1 Patients with RA experience impairment in all aspects of QoL (limitation of physical function, disability and pain) and mental health (anxiety and depression etc). Depression is two times more common in RA patients and intriguingly a bi-directional relationship with RA has been shown in cross-sectional studies.2 Patients with RA are more likely to suffer from anxiety, depression and low self-esteem, with high levels of associated mortality and suicide.3 There is an imperative need to improve the QoL and emotional wellbeing for these patients. Digitalization plays an incredibly significant role in health care, not only in monitoring but also in self-management of disease and symptoms. The aim of the study is to assess the impact of a digital health program on the emotional wellbeing and QoL of patients suffering from RA. Methods An intervention trial with a patient support program was delivered using Wellthy Care digital platform over a period of 16 weeks. Recruitment of 30 patients was done using a convenient sampling method. Patients who were diagnosed with RA were included in the trial. Patients who were under 18, pregnant/lactating, and with hearing disability were excluded. The program included interventions such as physiotherapy sessions, CBT (cognitive behavioural therapy) counselling, nutrition counselling, health and lifestyle coaching, symptom monitoring, disease awareness and self-management training. WHO-5 wellbeing score4, a widely used questionnaire for assessing subjective psychological well-being was administered along with a proprietary questionnaire for QoL by Wellthy. Results The Mean emotional wellbeing score of patients at baseline was 10.13 and at endline was 18.13. The program positively impacted the emotional wellbeing and quality of life by 78.97% and 41.18 % respectively. The mean Qol score of the patients at baseline was 12.82 and at endline was 18.1. The Paired T-test witnessed significant improvement in emotional wellbeing scores, Qol scores following RA patient support program from 10.13±4.65 to 18.13±3.04, an improvement of 8.0±1.61(p &amp;lt; 0.01), from 12.82±2.87 to 18.1±1.5, an improvement of 5.28±1.37 (p &amp;lt; 0.01), respectively. Conclusion The RA support program delivered by Wellthy therapeutics proved to be highly effective in improving emotional wellbeing and QoL for RA patients. This health program had a great impact on several dimensions of patient-reported outcomes for emotional wellbeing and QoL. Digital health technology has the potential to bridge the gap in current care delivery of chronic and debilitating conditions such as RA. Disclosure S. Bhalla: None. A. Shah: None. B. Sinha: None. S. Damse: None. P. Thiyagarajah: None. K. Soulat: None.

A medical assistive robot for tele-healthcare during the COVID-19 pandemic: development and usability study in an isolation ward.

The coronavirus disease 2019 (COVID-19) pandemic is affecting the mental and emotional well-being of patients, family members, and healthcare workers. Patients in the isolation ward may have psychological problems due to long-term hospitalization, the development of the epidemic, and the inability to meet their families. The medical assistive robot (MAR), acting as an intermediary of communication, can be deployed to address mental pressures. CareDo, a MAR with telepresence and teleoperation functions, is developed in this work for remote healthcare. This study aims to investigate its practical performance in the isolation ward during the pandemic. Two systems were integrated into the CareDo robot. For the telepresence system, web real-time communications solution is used for the multi-user chat system and the convolutional neural network is used for expression recognition. For the teleoperation system, an incremental motion mapping method is used for operating the robot remotely. This study was finally conducted at the First Affiliated Hospital, Zhejiang University for clinical trials. During the clinical trials in First Affiliated Hospital, Zhejiang University, tasks such as video chatting, emotion detection, and medical supplies delivery are performed through this robot. Seven voice commands are set for performing system wakeup, video chatting, and system exiting. Statistical durations from 1 second to 3 seconds of common commands are set to improve voice command detection. The facial expression was recorded 152 times for a patient in one day for the psychological intervention. The recognition accuracy reaches 95% and 92.8% for happy and neutral expressions respectively. Patients and healthcare workers can use this MAR in the isolation ward for tele-healthcare during the COVID-19 pandemic. It can be a useful approach to break the chains of virus transmission, and also an effective way for remote psychological intervention.

5612992 SICKLE CELL HEALTH AWARENESS, PERSPECTIVES, AND EXPERIENCES (SHAPE) SURVEY: FINDINGS ON THE BURDEN OF SICKLE CELL DISEASE AND IMPACT ON THE QUALITY OF LIFE OF PATIENTS AND CAREGIVERS IN THE UK

Background: Sickle cell disease (SCD) substantially impacts the physical and emotional well-being of patients and their caregivers, yet research of the impact of SCD on quality of life (QOL) is limited. Approximately 15,000 people in the United Kingdom (UK) live with SCD, and 1 in 2517 babies in England were diagnosed with SCD between 2019 and 2020, warranting the need to identify and address the challenges faced by individuals with SCD and their caregivers in this region of the world. The SHAPE survey aims to improve our understanding of the global impact of SCD on patients and their caregivers. This analysis reports survey findings from the UK within the context of insights obtained internationally. Aims: To understand the impact of SCD on the QOL of patients and caregivers in the UK. Methods: SHAPE was an online survey administered to patients and caregivers from the UK, Germany, France, US, Brazil, Canada, Saudi Arabia, United Arab Emirates, Bahrain, and Oman (patients only). Patients with SCD aged ≥12 years and caregivers aged ≥18 years supporting a patient with SCD were eligible. Participants completed a 12-minute online survey comprising a range of close-ended questions regarding their circumstances and experiences to build a robust and reliable dataset on which descriptive statistics were performed. Results: Of 919 patients and 207 caregivers interviewed globally, 151 patients and 30 caregivers were from the UK. Fatigue/tiredness (84%) and vaso-occlusive crises (VOCs; 71%) were the symptoms most frequently experienced by patients from all 10 countries. In the UK, a comparable percentage of patients experienced fatigue/tiredness (90%), while a higher percentage experienced VOCs (81%). In addition, the symptoms more frequently reported by patients in the UK (≥60%) than all patients were low mood/feeling down/depressed (74% UK vs 62% total), poor sleep/insomnia (72% UK vs 60% total), headache (71% UK vs 60% total), poor mobility/movement (70% UK vs 46% total), and joint stiffness (62% UK vs 50% total). Patients in the UK missed a similar number of days of school or work in 1 month to all patients (mean, 7.9 UK vs 7.5 total). Compared with all patients, a greater percentage of patients in the UK were worried about being seen less competent than others at school/work (72% vs 63% total). The symptoms experienced by all patients with SCD that most impacted caregivers’ lives were fatigue/tiredness (49%) and VOCs (43%), while caregivers in the UK reported a lower impact of fatigue/tiredness (27%) and a greater impact of VOCs (77%). More than half of the caregivers in the UK felt that caring for someone with SCD affected their earning potential (57% vs 54% total) and the ability to attend and succeed at school or work (53% vs 56% total). Caregivers in the UK missed an average of 6.1 days of school or work in a month vs 5.0 days among all caregivers. Summary/Conclusion: The findings reported in this survey highlight the symptoms of SCD that are perhaps a greater concern for patients in the UK compared with patients globally, emphasizing the need for symptom management to improve the QoL of affected individuals in the UK. Compared with all caregiver respondents, more caregivers in the UK identified VOCs as having the greatest impact on their lives, limiting the earning potential and ability to attend school or work. Overall, these insights highlight areas that require improved patient and caregiver support. Reference 1. Osunkwo et al, Am J Hematol 2021; 96: 404

Adolescent idiopathic scoliosis patients treated with bracing, surgery, or observation showed no difference in behavioral and emotional function over a 2-year period.

The purpose of this study was to assess if behavior and emotional function, as measured by the Pearson Behavioral Assessment Survey for Children, Second Edition (BASC-2) in patients and parents, changes with differing treatment protocols in patients with adolescent idiopathic scoliosis (AIS). One previous study showed abnormal BASC-2 scores in a substantial number of patients diagnosed with AIS; however, no study has assessed how these scores change over the course of treatment. AIS patients aged 12 to 21 years completed the BASC-2. The 176-item questionnaire was administered to subjects at enrollment, assessing behavioral and emotional problems across 16 subscales of 5 domains: school problems, internalizing problems, inattention/hyperactivity, emotional symptoms index, and personal adjustment. Parents were given an equivalent assessment survey. Surveys were administered again after 2 years. Subject treatment groups (bracing, surgery, and observation) were established at enrollment. Patients were excluded if they did not complete the BASC-2 at both time points. Forty-six patients met the inclusion criteria, with 13 patients in the surgical, 20 in the bracing, and 13 in the observation treatment groups. At enrollment, 26% (12/46) of subjects with AIS had a clinically significant score in 1 or more subscales, and after 2 years 24% (11/46) of subjects reported a clinically significant score in at least 1 subscale (P = .8). There were no significant differences in scores between enrollment and follow-up in any treatment group. Similar to what was reported in a previous study, only 36% (4/11) of patients had clinically significant scores reported by both patient and parent, conversely 64% (7/11) of parents were unaware of their child's clinically significant behavioral and emotional problems. Common patient-reported subscales for clinically significant and at-risk scores at enrollment included anxiety (24%; 11/46), hyperactivity (24%; 11/46), attention problems (17%; 8/46), and self-esteem (17%; 8/46). At 2-year follow-up, the most commonly reported subscales were anxiety (28%; 13/46), somatization (20%; 9/46), and self-esteem (30%; 14/46). Patients with AIS, whether observed, braced or treated surgically, showed no significant change in behavior and emotional distress over the course of their treatment, or compared with each other at 2-year follow-up.