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1.
Reumatologia ; 62(4): 266-273, 2024.
Article in English | MEDLINE | ID: mdl-39381730

ABSTRACT

Introduction: Antiphospholipid syndrome (APS) manifests with thrombosis and pregnancy losses and may significantly impair the health-related quality of life (HRQoL). So far, APS has been perceived as a less burdensome disease than systemic lupus erythematosus (SLE), but data on this are scarce. The purpose of the present study was to evaluate HRQoL in APS patients by applying the Short Form 36 Health Survey (SF-36) and World Health Organization Quality-of-Life Scale (WHOQoL-BREF); to examine the impact of primary APS and with coexisting SLE (APS/SLE) on patient HRQoL; and to provide a description of the APS patient population. Material and methods: One hundred twelve patients with APS were included in the study, 57 of them with primary APS and 55 with coexisting SLE. HRQoL was measured by the 36-Item SF-36 and WHOQoL questionnaires. Results: Mean age was 47 years (47.6 ±13.8), and 96 patients were (85.7%) women. The mean disease duration was 72 months. Health-related quality of life impairment was found in both components for all APS patients in comparison to the healthy Polish population (p < 0.0001). There was no difference between APS and APS/SLE groups in HRQoL (mental component p = 1.0, physical component p = 0.337). The history of venous thrombosis was associated with HRQoL impairment only in the APS/SLE group in the physical component (p = 0.0118), not in primary APS (p = 0.6862). The mental component of SF-36 was associated with all domains of WHOQoL-BREF, while the physical component was associated only with physical health (p < 0.001). Conclusions: Primary APS and APS secondary to SLE lead to equal impairment in HRQoL. Diagnosis and proper management of all patients with APS are essential to prevent thrombosis and miscarriages, which ultimately will lead to longer survival with optimal life quality.

2.
World J Urol ; 42(1): 587, 2024 Oct 23.
Article in English | MEDLINE | ID: mdl-39441315

ABSTRACT

PURPOSE: We evaluated short-term postoperative recovery in patients with benign prostatic hyperplasia (BPH), especially focusing on symptoms reduction and life quality enhancement. METHODS: We prospectively enrolled 160 BPH patients who underwent surgery and were followed up regularly for 12 weeks, collecting the International Prostate Symptom Score (IPSS), Quality of Life (QoL), and Qmax. Regression analysis and mixed effect models were used to evaluate the tendency of symptoms on recovery from the perspective of quality of life. RESULTS: At 12 weeks, all patients recovered well with conspicuous change in IPSS, QoL and Qmax, that were 4.80 ± 4.59, 1.34 ± 1.14,20.02 ± 8.61 mL/s respectively. Voiding symptoms were significantly reduced by 79.4% at 2 weeks, whereas storage symptoms recovered slowly until 12 weeks with residual lower urinary tract symptoms (LUTS), predominantly urinary frequency and nocturia. Improvements in incomplete emptying urination and urinary frequency were significantly associated with QoL. CONCLUSIONS: With regards to the comprehensive full-cycle treatment of LUTS patients, in addition to the objective results, more attention should also be focused on the change in following symptoms, that is, incomplete emptying urination, urine frequency and urination difficulty, which play key roles in the enhancement of patients' quality of life.


Subject(s)
Laser Therapy , Lower Urinary Tract Symptoms , Prostatectomy , Prostatic Hyperplasia , Quality of Life , Recovery of Function , Thulium , Humans , Male , Prostatic Hyperplasia/surgery , Prostatic Hyperplasia/complications , Lower Urinary Tract Symptoms/etiology , Lower Urinary Tract Symptoms/surgery , Aged , Prospective Studies , Middle Aged , Laser Therapy/methods , Prostatectomy/methods , Prostatectomy/adverse effects , Time Factors , Postoperative Period
3.
Article in Russian | MEDLINE | ID: mdl-39435776

ABSTRACT

OBJECTIVE: To identify factors affecting the quality of life (QOL) of patients with neurological manifestations of post-COVID syndrome (PCS). MATERIAL AND METHODS: The study included 60 patients undergoing treatment at the A.Ya. Kozhevnikov Clinic of Nervous Diseases for the underlying disease: tension headaches, migraine, musculoskeletal pain in the neck and back, who had recovered from COVID-19. The main group consisted of 40 patients (average age 47.7±11.43 years). In addition to the manifestations of the underlying disease, they complained of fatigue, decreased performance and concentration, anxiety, memory impairment, low mood, apathy, which arose for the first time during, immediately after, or within 2 months after the coronavirus infection (CI), which met the criteria of the PCS. The comparison group included 20 patients (average age 39±14 years). Patients in this group presented complaints only about their underlying diseases and did not note any peculiarities in their course due to the past CI. For objective assessment of emotional state, we used the Spielberger-Khanin scale, the Beck depression scale, MFI-20, SF-36. RESULTS: Factors influencing the QoL of patients with PCS are age over 40 years, high trait anxiety, depressive and asthenic syndromes. For the most part, the psychological domain of QOL was lower in patients with PCS, a decrease in vital activity, physical functioning, mental health has also been identified. CONCLUSION: The results of the study indicate a deterioration in QoL in patients with PCS. In terms of rehabilitation treatment, it is necessary to pay more attention to the treatment of anxiety, depressive and asthenic manifestations.


Subject(s)
COVID-19 , Quality of Life , Humans , Middle Aged , Male , COVID-19/psychology , COVID-19/complications , Female , Adult , Post-Acute COVID-19 Syndrome , Anxiety/etiology , Depression/etiology , Depression/psychology , SARS-CoV-2 , Fatigue/etiology , Fatigue/psychology , Nervous System Diseases/psychology , Nervous System Diseases/etiology , Migraine Disorders/psychology
4.
Soc Work Health Care ; : 1-18, 2024 Oct 22.
Article in English | MEDLINE | ID: mdl-39436808

ABSTRACT

The aim of this research is to evaluate the effect of visual education for the basic needs of people with disabilities on the health literacy and life quality of caregivers. The study sample comprised 268 caregivers evaluated in a pretest-posttest pattern. The data were collected using a Personal Information Form, the Health Literacy Scale, and the World Health Organization [WHO] Life Quality Scale-Short Form. Data were evaluated with the Wilcoxon test and Spearman correlation analysis. Following the education given to caregivers, an increase was determined in the Health Literacy Scale sub-dimension of information comprehension and in the WHO Life Quality Scale-Short Form sub-dimension of social relations. Thus it was seen that the visual education increased the health literacy and life quality of the caregivers.

5.
Physiother Res Int ; 29(4): e2140, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39356273

ABSTRACT

BACKGROUND: Cognitive decline is a debilitating symptom in Parkinson's disease (PD). Cognitive impairment in PD has a significant impact on many aspects of an individual's life, social interactions, and overall quality of life (QOL). It is also associated with a faster disease progression and an increased risk of developing dementia. A biopsychosocial approach is likely to address not only the underlying biological mechanisms of cognitive impairment in PD but also the psychological and social factors that can contribute to cognitive decline and influence treatment outcomes. METHOD: This experimental study was conducted on 60 older adults with PD at Saveetha medical college and hospital. Participants who met the inclusion criteria were randomly allocated into two groups of Biopsychosocial (n = 30) and conventional (n = 30). Participants in the intervention group received the multiple interventions based on the biopsychosocial approach with a duration of 60 min per session. Pre and post-test evaluation conducted using Scales for Outcomes in PD-cognition (SCOPA-cog) and Parkinson disease QOL Questionnaire (PDQ-8). RESULT: The results of the study showed that there is a statistically significant difference in the median scores within the Groups for the outcome measures SCOPA-cog and PDQ-8 (p < 0.001). For SCOPA-cog, the BPS group median score increased from 30 to 36, while the Conventional group median score increased from 31 to 33. For PDQ-8, the BPS group median reduced from 27 to 14, compared to the Conventional group's reduced from 30 to 24. On comparison between the post-test values, the biopsychosocial approach group showed more improvement in cognition and QOL with (p < 0.001). CONCLUSION: The findings of this study concluded that the biopsychosocial approach is effective in improving cognition and QOL among the Parkinson population.


Subject(s)
Cognitive Dysfunction , Parkinson Disease , Quality of Life , Humans , Parkinson Disease/psychology , Male , Female , Aged , Middle Aged , Cognition/physiology , Surveys and Questionnaires , Treatment Outcome
6.
J Eval Clin Pract ; 2024 Oct 13.
Article in English | MEDLINE | ID: mdl-39396390

ABSTRACT

OBJECTIVE: This study was planned to determine the effect of superstitions during pregnancy on quality of life and pregnancy adjustment. METHODS: A descriptive and correlational design was employed. Data were collected from all pregnant women who accepted to participate in the study and lived in the Central Anatolia Region in Türkiye between December 2022 and May 2023 (a single region was targeted due to the possibility of cultural diversity between regions). Data collection tools were a Descriptive Information Form, the Prenatal Self-Evaluation Questionnaire, the Superstitious Belief Scale (SBS), and the SF-36 Quality of Life Scale. Descriptive, comparative, and multiple regression analyses were performed. RESULTS: The mean age of the participants was 27.78 ± 5.09. The mean score of the pregnant women was 32.73 ± 11.18 on the total SBS, 155.80 ± 29.37 on the total Prenatal Self-Evaluation Questionnaire, and 59.27 ± 22.02 on the total SF-36 Quality of Life Scale. A relationship was observed between superstition and pregnancy adjustment and quality of life. The findings of this study showed that as the superstition level of pregnant women increased, their incompatibility with pregnancy increased and quality of life decreased. CONCLUSION: Midwives and other health personnel should be informed and made aware of superstitions and practices that affect maternal and child health and women should be educated about harmful superstitious practices in the prenatal period.

7.
Clin Dermatol ; 2024 Sep 13.
Article in English | MEDLINE | ID: mdl-39278515

ABSTRACT

Nail psoriasis affects 20 to 30% of psoriasis patients and is an early predictor of psoriatic arthropathy (PsA). We have evaluated the prevalence, clinical characteristics, and impact on quality of life of patients with nail psoriasis. We conducted a multicenter retrospective cohort study was of patients registered with The Malaysian Psoriasis Registry (MPR) from 1 January 1, 2007 through 31 December 31, 2020. Of the 24147 patients, 13081 (54.2%) had nail psoriasis. Patients with nail psoriasis had la ater onset of psoriasis (34.0±16.6 vs 32.9±17.6 years, p<0.001) and longer disease duration (11.4±10.5 vs 8.5±9.4 years, p<0.01), with a male to female ratio of 1.2:1. They were more likely to have a family history of psoriasis, cardiometabolic diseases, smoking history, higher body mass index, severe disease, PsA, face and scalp involvement and higher mean Dermatology Life Quality Index scores (9.36±6.84 vs 8.87±6.60). Systemic treatment and biologics were more commonly prescribed in this cohort (25.0% vs 13.2%, p<0.001). Overall, 54.2% of the MPR patients had nail involvement. Nail psoriasis was associated with longer duration of psoriasis, older age of onset, male gender, and a family history of psoriasis. It proved to be an important predictor for PsA, severe psoriasis, face and scalp involvement, increased cardiometabolic risk, and a greater impairment of quality of life.

8.
J Clin Med ; 13(17)2024 Sep 05.
Article in English | MEDLINE | ID: mdl-39274461

ABSTRACT

Background: Epidemiological data indicate that low back pain (LBP) affected 619 million people globally in 2020, representing a significant health and economic burden. Additionally, chronic LBP (cLBP) strongly impairs quality of life and leads to disability and premature retirement, thus emphasizing the need for providing deeper insight into the factors that affect treatment outcomes and for offering thorough guidance for the assessment and management of this condition. Taking into consideration the rising prevalence of cLBP and the knowledge gap referring to the overall health benefits of balneotherapy (BT), the aim of this study was to assess the effects of BT on functional status, quality of life, and psychological symptoms in patients with cLBP. Methods: Among 220 patients from the database, two groups were retrospectively identified: patients receiving conventional pharmacological therapy (CT) and patients receiving BT. The effectiveness of the treatment was assessed through a visual analog scale for pain intensity, EuroQol (EQ-5D), and the Work Ability Index Questionnaire. In order to provide deeper insight into the quality of life and also factors associated with functional status and mental health affected by BT, we also used the Short Form Health Survey Questionnaire and the Center of Epidemiologic Studies Depression Scale. Results: Both age and treatment protocol were found to have a significant impact on all observed parameters, i.e., older patients and those receiving CT tended to report lower overall health and physical functioning. On the other hand, BT was associated with better functionality and disability perception status. Conclusions: Understanding the association between individual perceptions of functionality and its emotional and social elements provides a basis for providing comprehensive guidelines and recommendations for cLBP management.

9.
Sci Rep ; 14(1): 21384, 2024 09 13.
Article in English | MEDLINE | ID: mdl-39271764

ABSTRACT

Central vision loss (CVL) is a major form of low vision that remains inadequately managed worldwide. This study evaluated the clinical efficacy of a novel head-mounted device (HMD), Onyx, designed to enhance visual function and vision-related quality of life for CVL patients. It employs a projection system that enables patients to leverage their residual peripheral vision for environmental awareness. It also integrates artificial intelligence to augment the automatic recognition of text, faces, and objects. In this single-center, prospective cohort study, 41 binocularly low vision patients with CVL were instructed to use Onyx for 4 to 6 h daily over a one-month period. Various metrics were assessed, including near and distance visual acuity (VA), recognition abilities for faces and objects, and the low vision quality-of-life (LVQOL) questionnaire scores, at the start and end of the study. The results showed significant improvements in near VA for 60.98% of the participants, distance VA for 80.49%, and recognition ability for 90.24%. 68.29% of the participants showed significant improvements in the LVQOL scores. Improvement in recognition ability was negatively correlated with baseline recognition ability. Additionally, improvement in the LVQOL scores was correlated with age and the baseline LVQOL score. Overall, the study found that the novel HMD significantly improved visual function and vision-related quality of life for low vision patients with CVL, highlighting the potential benefits and the need for further evaluation of such devices.


Subject(s)
Quality of Life , Vision, Low , Visual Acuity , Humans , Male , Female , Visual Acuity/physiology , Middle Aged , Aged , Vision, Low/physiopathology , Vision, Low/therapy , Vision, Low/rehabilitation , Prospective Studies , Adult , Treatment Outcome , Surveys and Questionnaires , Head , Aged, 80 and over
10.
Postepy Dermatol Alergol ; 41(4): 372-377, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39290896

ABSTRACT

Introduction: Vitiligo (VL) is associated with several autoimmune diseases, especially Hashimoto's thyroiditis, VL and concomitant Hashimoto's thyroiditis (HT) up to 34% in VL. Aim: To assess the predictive value of serum inflammatory factors in guiding treatment response among patients with concurrent VL and concomitant HT. Material and methods: This retrospective study enrolled 67 cases of VL and concomitant HT, and the patients according to treatment outcomes were divided into the unsatisfied group and the satisfied group. The serum thyroid parameters, autoimmune markers, and inflammatory factor levels were analysed and the correlation analysis of serum inflammatory factors was made. Results: The study analysis of serum thyroid parameters showed elevated levels of thyroid-stimulating hormone (TSH), free triiodothyronine (FT3), free thyroxine (FT4), thyroperoxidase (TPO), and thyroglobulin (Tg) (p < 0.05) in the group with unsatisfactory treatment response. Patients in the unsatisfied group exhibited elevated inflammatory factor levels of C-reactive protein (CRP), tumor necrosis factor-α (TNF-α), interleukin-6 (IL-6), interleukin-8 (IL-8), and interleukin-10 (IL-10) (p < 0.05) compared to their counterparts in the satisfied group. Correlation analysis showed that the levels of the above inflammatory factors were significantly negatively correlated with the treatment response. Conclusions: CRP, TNF-α, IL-6, IL-8, IL-10 showed the strongest correlation with VL and concomitant HT, and serum inflammatory factors levels can predict treatment response in patients with VL and concomitant HT.

12.
Arch Dermatol Res ; 316(9): 623, 2024 Sep 14.
Article in English | MEDLINE | ID: mdl-39276276

ABSTRACT

This study examines the origins and utilization trends of top quality-of-life (QoL) measures in acne research. A literature search on PubMed identified the Dermatology Life Quality Index (DLQI), Cardiff Acne Disability Index (CADI), and Acne Quality-of-Life Questionnaire (Acne-QoL) as the most frequently used QoL measures in studies on Acne Vulgaris. The DLQI was implemented in 142 studies it since its inception, compared to 43 utilizing CADI and 21 utilizing Acne-QoL. Despite it not being acne-specific, DLQI's usage surpassed other measures by over 50% annually since 2006. While DLQI displayed the steepest rise in utilization, usage of all measures increased significantly from 2010 to 2020. This trend underscores the growing emphasis on patient-centered outcomes in acne research, highlighting the need to incorporate both patient-reported and objective outcomes to better capture disease severity and its impact on patients' lives. For dermatologists, QoL indices can expand disease severity beyond purely objective clinical measurements.


Subject(s)
Acne Vulgaris , Patient-Centered Care , Quality of Life , Severity of Illness Index , Humans , Acne Vulgaris/psychology , Acne Vulgaris/therapy , Acne Vulgaris/diagnosis , Patient Reported Outcome Measures , Surveys and Questionnaires/statistics & numerical data
13.
Cureus ; 16(7): e65873, 2024 Jul.
Article in English | MEDLINE | ID: mdl-39219933

ABSTRACT

Background Vitiligo is a prevalent skin disease that results from the loss of melanocytes and subsequent hypo-melanosis, resulting in the depigmentation of the skin. It not only presents as pathological manifestations but also imposes a substantial psychological burden and exerts a significant influence on the quality of life (QOL) of individuals. This research proposal seeks to systematically explore the association between vitiligo and the QOL of affected individuals, employing rigorous scientific methodologies to identify effective interventions aimed at improving their holistic well-being. Methodology It was a cross-sectional survey conducted in the Eastern Region of the Kingdom of Saudi Arabia (KSA). Data collection utilizes an online survey through Google Forms and employs the Dermatology Life Quality Index (DLQI). Appropriate statistical analyses were performed. Results Our study comprised 263 vitiligo patients, 55.1% of whom were females and 54.4% of whom were aged 18-30. Impact assessment revealed a substantial emotional toll (56.3% embarrassed), affecting daily activities (42.6%) and clothing choices (43.7%). Notably, 36.5% reported very much impact on relationships and 35.7% on sexual problems. Notably, 41.4% face a very large impact, and 35.4% face an extremely large impact. Linear regression identified a significant gender difference (p = 0.008), with males experiencing less QOL impact or females experiencing more QOL impact due to vitiligo. Age and marital status showed nonsignificant associations. Conclusions Our study highlights the substantial impact of vitiligo on the QOL among Saudi adults. Gender significantly influences severity, with females experiencing a more severe impact on the QoL, emphasizing the need for tailored interventions and support.

14.
Arch Dermatol Res ; 316(8): 601, 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39225867

ABSTRACT

Scabies is a prevalent ectoparasitic infectious disease, caused by the mite Sarcoptes scabiei. As a consequence of the infestation, localised cutaneous inflammation, pruritus and polymorphic skin lesions develop. The primary symptoms of scabies manifest as hypersensitivity-like reactions and immune responses, the precise mechanisms of which remain poorly defined. The objective of this study was to evaluate the effects of oral ivermectin treatment in patients with scabies on the systemic immune response and the patient's quality of life (QoL). Patients admitted to the dermatology outpatient clinic and diagnosed with scabies were administered oral ivermectin treatment following diagnosis at week 0 and 2. Laboratory tests were conducted to measure complete blood count (CBC), erythrocyte sedimentation rate (ESR), and C-reactive protein (CRP) levels before treatment and at week 4. The systemic immune-inflammation index (SII) was calculated using the platelet, neutrophil and lymphocyte counts. Additionally, data pertaining to the Dermatological Life Quality Index (DLQI) were recorded. In 119 patients (51 males) diagnosed with scabies, increases in ESR, CRP, and SII values and decreases in inflammatory cell counts and DLQI scores were observed one month after treatment with oral ivermectin. The results of the study showed that the use of oral ivermectin, a scabicidal agent, triggered the inflammatory response and improved the QoL of the patients.


Subject(s)
C-Reactive Protein , Ivermectin , Quality of Life , Scabies , Humans , Scabies/drug therapy , Scabies/immunology , Ivermectin/administration & dosage , Ivermectin/therapeutic use , Male , Female , Middle Aged , Administration, Oral , Adult , C-Reactive Protein/analysis , C-Reactive Protein/metabolism , Aged , Young Adult , Adolescent , Antiparasitic Agents/administration & dosage , Antiparasitic Agents/therapeutic use , Sarcoptes scabiei/drug effects , Sarcoptes scabiei/immunology , Blood Sedimentation , Inflammation/immunology , Inflammation/drug therapy , Treatment Outcome , Animals
15.
Adv Ther ; 41(10): 3951-3971, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39207667

ABSTRACT

INTRODUCTION: The aim of this observational, multicenter study was to assess the real-world use of brodalumab for the treatment of moderate-to-severe plaque psoriasis in patients in the Czech Republic, using data from the BIOREP registry. METHODS: The study included 273 patients aged ≥ 18 years with moderate-to-severe psoriasis who received brodalumab. Endpoints were drug survival (time from treatment initiation to discontinuation), effectiveness [Psoriasis Area and Severity Index (PASI)], and health-related quality-of-life [Dermatology Life Quality Index (DLQI)]. RESULTS: Predicted drug survival probability was 92.4% [95% confidence interval (CI): 89.1, 95.7%] at 6 months and 84.2% (95% CI 79.5, 89.1%) at 12 months; this was maintained at 24 months [80.4% (95% CI 74.5, 86.8%)]. Younger age, higher body mass index, and no previous biologic treatment were significantly associated with longer drug survival. Absolute PASI ≤ 3 after 3 months was achieved by 89.8% of patients; 92.4%, 77.8%, and 59.1% reached PASI 75, PASI 90, and PASI 100, respectively. After 12 months, 96.5% of 141 patients had an absolute PASI ≤ 3. The proportion of patients achieving DLQI 0/1 was 87.3% at 12 months. CONCLUSION: This study demonstrated high and sustained drug survival with high rates of skin clearance and improved quality of life in patients with relatively severe disease treated with brodalumab. Improvements were observed as early as 3 months post-treatment initiation and were sustained for up to 24 months in a real-life setting.


Subject(s)
Antibodies, Monoclonal, Humanized , Psoriasis , Quality of Life , Registries , Severity of Illness Index , Humans , Psoriasis/drug therapy , Male , Female , Czech Republic , Middle Aged , Adult , Antibodies, Monoclonal, Humanized/therapeutic use , Treatment Outcome , Aged , Dermatologic Agents/therapeutic use
17.
Support Care Cancer ; 32(9): 606, 2024 Aug 21.
Article in English | MEDLINE | ID: mdl-39168868

ABSTRACT

PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.


Subject(s)
Neoplasms , Palliative Care , Quality of Life , Referral and Consultation , Terminal Care , Humans , Palliative Care/methods , Male , Female , Neoplasms/therapy , Prospective Studies , Middle Aged , Aged , Terminal Care/methods , Longitudinal Studies , Aged, 80 and over , Adult
18.
Ther Adv Chronic Dis ; 15: 20406223241264477, 2024.
Article in English | MEDLINE | ID: mdl-39091508

ABSTRACT

Background: Elexacaftor/tezacaftor/ivacaftor (ETI) has reduced many symptoms of cystic fibrosis (CF). Objectives: We sought to identify the impact of ETI on both symptoms and treatment decisions among adults with CF. Design: Participants were enrolled in a cross-sectional study. Surveys were sent via a RedCap link. Semistructured interviews were administered remotely via Microsoft Teams. Interviews were audio recorded and professionally transcribed. Methods: We assessed Cystic Fibrosis Questionnaire-Revised (CFQ-R) subscales for physical, respiratory, emotion, and treatment, and analyzed semistructured interviews covering CF treatment regimens and daily living. Quantitative and qualitative results were analyzed separately and via a mixed-methods convergence coding matrix. Results: Twenty-four adults with CF taking ETI were included. CFQ-R subscale scores (mean scores/standard deviation) were physical (82.1/22.8), respiratory (83.7/11.2), emotion (65.3/14.2), and treatment (57.5/20.1). Three themes about decision-making for non-ETI-treatments emerged: (1) How I'm feeling, (2) Not noticing a difference, and (3) Uncertainty about long-term impact of modifying treatment regimens, and we found participants weighed each of these factors in their treatment decisions. Key findings from mixed-methods analysis show that among individuals experiencing higher CFQ-R scores for physical and respiratory compared to emotion and treatment, there were statements indicating that while those participants were experiencing better physical health, many continued their burdensome treatment regimens. Conclusion: With little long-term data on the impact of reducing non-ETI treatments, participants weighed how they were feeling, treatment efficacy beliefs, and risk tolerance when making treatment decisions.


The impact of Trikafta on CF health, health-related quality of life, and treatment adherence People with cystic fibrosis may be experiencing many health benefits from taking Trikafta, leading some people to cut back on or stop their other non-Trikafta treatments. We explored the impact of Trikafta on CF health, health-related quality of life, and treatment adherence for people with CF currently taking Trikafta. We compared health-related quality of life subscales from the CF Questionnaire-Revised questionnaire focused on physical symptoms, respiratory symptoms, treatment burden, and emotional well-being to assess whether people with CF were experiencing improved physical and respiratory health compared to emotional health and feelings of treatment burden. We found that many people were feeling better physically, but were still experiencing poor mental health and high treatment burden. We then looked at results from open-ended interviews to see if our qualitative data could explain the differences in the health-related quality of life scores. We found that while people were feeling better physically, many people were still continuing with the pre-Trikafta treatment regimens which may explain why physical health and respiratory health scores were higher than emotional well-being and treatment burden scores. At this time, we believe that more research is needed to guide treatment decisions related to cutting back or stopping burdensome treatment regimens.

19.
Healthcare (Basel) ; 12(15)2024 Aug 03.
Article in English | MEDLINE | ID: mdl-39120242

ABSTRACT

This narrative review explores the essential role of physical activity in managing long COVID, which is characterized by persistent symptoms such as fatigue, breathlessness, and cognitive impairments following SARS-CoV-2 infection. In this context, "physical activity" includes various exercises, such as aerobic and resistance training, as well as flexibility and balance exercises, thereby encompassing the subset known as "exercise". The methodology involved a comprehensive literature search across PubMed, EBSCO (EDS), and Google Scholar, selecting peer-reviewed articles from December 2019 to June 2024 focusing on long COVID physical activity interventions. The review highlights that tailored exercise programs, adjusted to individual health status and abilities, significantly alleviate symptoms and enhance psychological well-being. Key findings emphasize the importance of personalized exercise prescriptions due to the variability in patient responses and the need for a multidisciplinary approach in developing and monitoring interventions. Despite promising outcomes, the review identifies research gaps, including the need for long-term studies, randomized controlled trials, and deeper mechanistic insights. It suggests that standardized reporting, templates like the Consensus on Exercise Reporting Template (CERT), and integrating digital health tools are essential for optimizing interventions. Overall, the review advocates including personalized physical activity or exercise programs in standard care for long COVID to improve patient outcomes and quality of life.

20.
Cureus ; 16(7): e64917, 2024 Jul.
Article in English | MEDLINE | ID: mdl-39156258

ABSTRACT

BACKGROUND: Acne vulgaris is a chronic inflammatory skin condition that primarily affects the face, affecting a person's physical appearance. Anxiety, depression, and body dysmorphic disorder (BDD) are the three primary psychological conditions seen in dermatological patients. This study aimed to assess how prevalent anxiety, depression, and BDD in acne patients and the negative effect of acne on quality of life and self-esteem in dermatology patients. MATERIALS AND METHODS: This cross-sectional study was done at the dermatology clinic in East Jeddah Hospital, Jeddah, Saudi Arabia. Data was collected using two pre-designed questionnaires. Part 1 contained demographic information and part 2 included four sets of questionnaires including the dermatology life quality index (DLQI), Rosenberg Self-Esteem Scale (RSES), Hospital Anxiety and Depression Scale (HADS), and Body Dysmorphic Disorder Questionnaire (BDDQ). Post-acne hyperpigmentation index (PAHPI), global scale for acne scar severity (SCAR-S), and LEEDS were used by the dermatologist to assess the patients' acne severity, post-acne scars, and pigmentation conditions. Data were analyzed using the IBM SPSS Statistics for Windows, Version 26 (Released 2019; IBM Corp., Armonk, New York, United States). RESULTS: The majority of the participants were females (76%), Saudi Arabians (95%), students (58%), single (82%), and attended university (66%). The mean acne duration was 5.75 ± 4.58 years and 44% of the participants used social media for more than five hours per day. The participants scored high on the RSES (27.54 ± 3.05), indicating normal self-esteem. The HADS-A score was 11.14 ± 2.74, whereas the HADS-D score was 11.46 ± 1.78, indicating anxiety and depression symptoms. Their mean SCAR-S score is 4.38 ± 2.89. DLQI scores (6.04 ± 6.05) indicate that acne had a moderate effect on patients' quality of life. The percentage of positive BDD patients is significantly higher than those with negative BDD (p = 0.022). Furthermore, a significant association between PAHPI total score and SCAR-S (r = 0.48, p ≤ 0.001) and HADS-D (r = 0.39, p = 0.005) total scores. CONCLUSION: The study focuses on how acne vulgaris affects patients' quality of life. The findings suggest that acne-related quality of life is positively associated with anxiety and depressive symptoms. This study provides clinicians with practical advice for implementing a more thorough management strategy for acne vulgaris.

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