OBJECTIVE: This patient perspective study aimed to explore the emotional and psychosocial burdens faced by patients with psoriasis in Malaysia and their attitudes toward current psoriasis treatment.
METHODS: Adult patients with mild or moderate-to-severe plaque psoriasis, preferably with concomitant psoriatic arthritis, participated in a patient advisory board meeting along with a senior consultant dermatologist. Patients had to describe their initial symptoms, time of diagnosis, misdiagnosis, treatment initiation delays, treatment course, flare-ups, psychosocial impact, and QoL associated with psoriasis.
RESULTS: The 11 participating patients had a mean age of 46 years with mean age of psoriasis diagnosis and an average year of suffering with psoriasis being 21.9 years and 24.5 years, respectively. The most common initial symptom of psoriasis was itching (62.5%), particularly of the scalp followed by itchiness and red patches on skin. Most patients (90%) reported initial misdiagnosis with other skin diseases by their primary care physicians (PCPs), which led to delayed treatment initiation. Most patients reported an emotional impact of psoriasis, including low self-esteem (18%), lack of confidence (27%), shock (18%), sadness (9%), and outrage (9%). Social discrimination/stigmatization in public places and at work (45%), and even from relatives (18%) was another reported challenge. However, 73% of patients were highly satisfied with the current treatment. Overall, the patients agreed that the lack of public awareness of psoriasis was responsible for the social stigma.
CONCLUSIONS: The evidence obtained from this qualitative study indicated that psoriasis has a significant emotional and psychological impact on the patients affecting their QoL. Lack of awareness of the disease among PCPs, patients, and the public is a major challenge leading to poor treatment outcomes.
METHODOLOGY: The study used a prospective follow-up mix methodology approach with six-month follow-ups of patients. The participants included in the study population were those with chronic kidney disease grade 4 and kidney failure. Pre-validated and translated questionnaires (Kidney Disease Quality of Life-Short Form, Hamilton Depression Rating Scale Urdu Version, and Morisky Lewis Greens Adherence Scale) and assessment tools were used to collect data.
RESULTS: This study recruited 314 patients after an initial assessment based on inclusion criteria. The mean age of the study population was 54.64 ± 15.33 years. There was a 47.6% male and a 52.4% female population. Hypertension and diabetes mellitus remained the most predominant comorbid condition, affecting 64.2% and 74.6% of the population, respectively. The study suggested a significant (p < 0.05) deterioration in the mental health composite score with worsening laboratory variables, particularly hematological and iron studies. Demographic variables significantly impact medication adherence. HRQOL was found to be deteriorating with a significant impact on mental health compared to physical health.
CONCLUSIONS: Patients on maintenance dialysis for kidney failure have a significant burden of physical and mental symptoms, depression, and low HRQOL. Given the substantial and well-known declines in physical and psychological well-being among kidney failure patients receiving hemodialysis, the findings of this research imply that these areas related to health should receive special attention in the growing and expanding population of kidney failure patients.
METHODS: This cross-sectional study was conducted from June 2021 until April 2022, and SLE patients were recruited to complete the SLEQoL, LupusQoL and Short Form Health Survey (SF-36) in Malay language. Disease activity were recorded using the modified SLE Disease Activity Index (M- SLEDAI) and British Isles Lupus Assessment Group 2004 (BILAG-2004) index. Presence of organ damage was determined using the SLICC Damage index. Cronbach's alpha was calculated to determine internal consistency while exploratory factor analysis was done to determine the construct validity. Concurrent validity was evaluated using correlation with SF-36. Multiple linear regression analysis was deployed to determine the factors affecting each domain of SLEQoL and LupusQoL.
RESULTS: A total of 125 subjects were recruited. The Cronbach's α value for the Malay-SLEQoL (M-SLEQoL) and Malay-LupusQOL (M-LupusQoL) was 0.890 and 0.944 respectively. Exploratory factor analysis found formation of similar number of components with the original version of questionnaires and all items have good factor loading of >0.4. Both instruments also had good concurrent validity with SF-36. M-SLEQoL had good correlations with BILAG-2004 and M-SLEDAI scores. Musculoskeletal (MSK) involvement was independently associated with lower M-SLEQoL in physical function, activity and symptom domains. Meanwhile, MSK and NPSLE were associated with fatigue in M-LupusQoL.
CONCLUSION: Both M-SLEQoL and M-LupusQoL are reliable and valid as disease -specific QoL instruments for Malaysian patients. The M-Lupus QoL has better discriminative validity compared to the M-SLEQoL. SLE patients with MSK involvement are at risk of poor QoL in multiple domains including physical function, activity, symptoms and fatigue.
AIM: The study aimed to understand the experiences of parents of children with thalassemia related to their family, financial, social, treatment, and psychological issues in Pakistan.
METHODS: This descriptive phenomenological study recruited 21 parents of children with thalassemia through purposive sampling until data saturation was achieved. Analysis of transcribed interviews was performed through Colaizzi's method and themes and subthemes revolving around diagnosis, challenges, and treatment issues were extracted.
FINDINGS: A total of 21 Pakistani parents participated in this study. Most of the participants were females (n = 16, 76.19%), housewives/stay-at-home moms (n = 13 (61.90%), and were uneducated (n = 6, 28.57%). Regarding genetic traits, only three (14.28%) parents declared that they had genetic traits of thalassemia. The findings of our study revealed that thalassemia is enormously influenced by psychosocial and economic problems because of this disease in their families.
CONCLUSION: Our findings indicated that parents of these children face multi-faceted challenges, such as physical, socio-emotional, financial, and familial. These findings may lead to an adequate understanding of their individual needs and efficient utilization of supportive and care programs.
PRACTICE IMPLICATIONS: An understanding of such experiences, involving those distinctive to Pakistani culture, is especially vital to inform the care of these children and enhance their quality of life.
OBJECTIVE: This study investigated the extent to which accessibility and use of 11 specific family-friendly work conditions were associated with physical health, anxiety and depression in Malaysian women with young children.
DESIGN: A cross-sectional design using a retrospective self-complete, anonymous, online survey was conducted between March and October 2021.
METHODS: Women with a child aged 5 years or less (N = 190) completed an online survey measuring their exposure (availability and use) to 11 specific family-friendly work conditions, and their physical health, anxiety, and depression. The sample included women who were currently and recently working and with both formal and informal employment.
RESULTS: After accounting for potential confounders, women who used paid maternity leave have a lower likelihood of having anxiety symptoms.
CONCLUSION: Future research is needed to extend the findings from this study by over-sampling women who are informally employed and not currently working. Policy creation and development processes, including research and decision-making, should be led by and inclusive of women. For example, research funding could be allocated to 'lived experience' research that privileges the co-design of research with consumers. Based on these findings, the extent to which family-friendly work conditions fulfill their intent to improve the well-being for working women requires further critique.
METHODS AND ANALYSIS: All observational studies, including descriptive, descriptive-analytic, case-control, and cohort studies published between 1990 and 2019, will be included in the study. Review articles, case studies, case reports, letter to editors, pilot studies, and editorial will be excluded from the study. The search will be conducted in the Cochrane Central Register, MEDLINE, Google Scholar, EMBASE, ProQuest, Scopus, WOS, and CINAHL databases. Eligible studies should assess at least one of the sexual dysfunction symptoms in pregnant women or in the first year postpartum. Quality assessment of studies will be performed by two authors independently based on the NOS checklist. This checklist is designed to assess the quality of observational studies. Data will be analyzed using Stata software ver. 11. Considering that the index investigated in the present study will be the level of sexual disorder, standard error will be calculated for each study using binomial distribution. The heterogeneity level will be investigated using Cochran's Q statistic and I2 index in a chi-square test at a significance level of 1.1. Predictable limitations of this study included a small number and unacceptable quality of studies.
DISCUSSION: This systematic review addresses the factors associated with sexual dysfunction during pregnancy and postpartum. Considering the high prevalence of sexual dysfunction among women, the treatment of this problem has been highly sought after by the World Health Organization in recent years. The results of this study can help discover new strategies by introducing factors affecting women's sexual dysfunction, thereby eliminating or diminishing these factors, and play an important role in improving the quality of life of women during pregnancy and postpartum periods.
SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018083554.
METHODS: This cross-sectional study recruited adult PWH during routine follow-up at five HIV clinical sites in the Asia-Pacific region. Participants were screened for depression using Patient Health Questionnaire-9 and SU using Alcohol, Smoking, and Substance Involvement Screening Test (ASSIST). Quality of life (QoL) was assessed with WHOQOL-HIV BREF and functional ability with World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Factors associated with mean QoL and disability scores were analysed using linear regression.
RESULTS: Of 864 PWH enrolled, 753 screened positive for depression or SU. The median (interquartile range, IQR) age was 38 (31-47) years and 97% were on ART. Overall mean WHOQOL-HIV BREF and WHODAS scores indicated greater impairment with increasing depressive symptom severity and SU risk. In multivariate analysis, PWH reporting previous trauma/stress (difference = 2.7, 95% confidence interval [CI] 1.5-3.9, P
MATERIALS AND METHODS: This is a retrospective study of patients with chronic refractory breathlessness and Modified Medical Research Council (mMRC) dyspnoea scale grade ≥ 2 who attended the BST clinic over 1 year period. BST consists of two clinic sessions 2 weeks apart. Data was retrieved from patients' medical notes and analysis done using Microsoft Excel.
RESULTS: A total of 21 patients were identified. Median age was 69 years with 52% of females. 72% had non-malignant diagnoses. Median Charlson's Comorbidity Index score was 6.5. Median mMRC dyspnoea scale was 3. 47.6% had long term oxygen usage. Median Australian Karnofsky Performance Scale (AKPS) was 65 and the median baseline breathlessness visual analogue scale (VAS) was 2. 62% completed two sessions, the remaining 38% completed only one session. Mean time from BST intervention to death was 18.26 weeks, median was 22 weeks. 72% died at home, whilst 28% died in the hospital. All the patients scored 4 (somewhat agree) and 5 (strongly agree) on the overall feedback score.
CONCLUSIONS: Development of a breathlessness intervention service is feasible in a resource limited setting and generally accepted by most patients. More research and prospective studies are needed to evaluate the effectiveness of BST in the future.
METHODS: A cross-sectional study of patients with advanced CKD (stage 4 and 5 non-dialysis) treated in our centre. We interviewed those aged 18 to 60 years old who were selected based on random sampling of their employment status and associated factors. Work disabilities and quality of life were assessed using work productivity and activity impairment (WPAI-GH) questionnaire and kidney disease and quality of life (KDQOL-36) questionnaire. These questionnaires were assisted by the main investigators to aid participants in facilitating their response process.
RESULT: A total of 318 patients recruited, 53.5% were males, with a mean age of 49.0 ± 9.0 years old. The main cause of CKD was diabetes (67.0%) followed by hypertension (11.3%). Majority of them were obese (55.3%) with a mean body mass index of 28.81 ± 6.3 kg/m2. The mean household income was RM 4669.50 ± 3034.75 (USD1006.27 ± 653.99). The employment rate was 50% (n = 159). 86% of the unemployed patients were in B40 income category. Multiple Logistic Regression was performed on the significant factors affecting employment status showed one year increase in age increased 6.5% odds to be unemployed. Female and dyslipidaemia had 2.24- and 2.58-times higher odds respectively to be unemployed. Meanwhile, patients with tertiary level of education were 81% less odds to be unemployed. Patients with advanced CKD had a mean percentage of 24.35 ± 15.23 work impairment and 13.36 ± 32.34 mean percentages of face absenteeism due to the disease burden. Furthermore, patients who were unemployed had significant perceived symptoms and problem lists, effects, and burden of kidney disease (p<0.01) and showed poor mental and physical composites (p<0.01) as compared with those who were employed.
CONCLUSION: The employment rate of advanced CKD patients was low with half of patients lost their jobs due to the disease burden and had poor mental and physical composites of quality of life. This raises the concern for financial support for long term renal replacement therapy.
METHODS: The source questionnaire in English was translated into Bahasa Melayu. Linguistic validation guidelines by the MAPI Research Institute were followed. The already validated Bahasa Melayu PedsQL 4.0 Generic Core Scales was used for comparison. Sociodemographic data were collected during the interview. Statistical analyses were performed using SPSS version 25.0.
RESULTS: Sixty-nine children aged 8 to 18 with CKD stages 4 and 5, with or without dialysis, and their caregivers were recruited. Mean age was 12.62 ± 2.77 (SD). Evaluation of the PedsQL 3.0 ESRD Module Bahasa Melayu version demonstrated good internal consistency (Cronbach alpha 0.82). There was good agreement between child self-report and parent proxy report in all domains; average intraclass correlation coefficients (ICC) were 0.78, 95% CI (0.71, 0.84). Scores obtained from Generic 4.0 scales correlated with the disease-specific ESRD 3.0 scale, Spearman's rho = 0.32, p = 0.007. The Kruskal-Wallis H test indicated that there were no significant differences between stages of CKD and their respective mean HRQoL score, χ2(2) = 2.88, p = 0.236.
CONCLUSIONS: The PedsQL 3.0 ESRD Module Bahasa Melayu version is a reliable and feasible tool for cross-cultural adaptation. A longer prospective study may help better illustrate the quality of life in this group of children.
METHODS: We conducted a comprehensive cross-sectional study across multiple centers in Iraq from April to September 2021. Our cohort consisted of 404 women who had a mastectomy for breast cancer treatment, 154 of whom also chose to have BR. Utilizing the European Organisation for Research and Treatment of Cancer's (EORTC) tools specifically, select domains from EORTC QLQ-BR23, QLQ-C30, and QLQ-BRECON23-we evaluated various facets of their QoL.
RESULTS: The mean QoL score was 54 out of 100, with patients who did not undergo BR reporting slightly higher scores (55) compared to those who did (52). Notably, social and sexual functioning scores were statistically superior in the non-BR group. Satisfaction with surgery, sexual function, and breast aesthetics were the lowest rated aspects among BR patients, indicating a considerable gap between expectations and outcomes. Marital status and the type of mastectomy notably influenced body image and sexual function. A significant portion of patients (100 out of 250) opted out of BR due to recurrence concerns, while 26.2% (106 out of 154) pursued BR to restore their pre-mastectomy physique.
CONCLUSION: Contrary to the anticipated benefits of BR, our findings suggest that women who underwent the procedure reported a lower QoL compared to those who did not. The outcomes highlight the discrepancy between expected and actual benefits of BR, suggesting a pressing need for comprehensive rehabilitation programs. These programs should aim to enhance the QoL for post-mastectomy patients and provide in-depth counseling to align expectations with the potential realities of BR.
OBJECTIVES: Work-related disability is common in persons with spinal cord injury (SCI). The aims of this study are to examine the associations of employment with self-perceived health (SPH) and quality of life (QoL) across 22 countries and to explore the covariates around employment and SPH and QoL.
SETTING: Community.
METHODS: We analyzed 9494 community-dwelling persons with SCI aged 18-65. We performed an adjusted regression and path analysis. The independent variable was 'employment' and the dependent variables were two single items: QoL (very poor to very good) and SPH (excellent to poor). Covariates included the Gross Domestic Product (GDP), education, time since SCI, age, gender, years of employment after SCI, SCI level (paraplegia, tetraplegia), and completeness of SCI.
RESULTS: Participants' mean age was 47, 74% were male, and 63% had paraplegia. We found an association between employment and QoL and SPH. While the magnitude of the effect of employment on QoL did not differ across GDP quartiles, its perceived effect on QoL was found to be significant in the highest GDP quartile. Employment was predictive of good SPH in two GDP quartiles (Q1 and Q4), but significant across all quartiles when predicting poor perceptions, with the magnitude of effect varying significantly.
CONCLUSIONS: Employment is closely related to QoL and SPH depending on the GDP. We may positively influence the QoL and SPH in the SCI population to promote better employment outcomes by considering the infrastructure and economy.
METHODS: An electronic data search in Web of Science, SCOPUS, and PubMed for relevant papers; those written in English; those reporting quantitative data; and those including more than one hundred patients who received just chemotherapy were included. Studies involving participants that received other kinds of anti-neoplastic therapies were excluded.
RESULTS: A total of 35 papers published between January 2000 and December 2021 were retrieved from the search databases of which (11612 patients) met the inclusion criteria. Findings showed that fatigue negatively affected QOL with a pooled prevalence of 49% (95% CI; 25.00-74.00) and the significant heterogeneity between articles was (I²=98%, P <0.001). Further, breast cancer contributed to the majority of selected articles with about 55 % (95%CI; 9:00- 94:00), followed by cancer (unspecified) 44% (95%CI; 5:00 - 92:00). Most studies (71%) (95%CI; 4:00 - 99:00) used the brief fatigue inventory (BFI) tool to assess severity of fatigue and 39% (95%CI; 17:00 -68:00) employed the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire to evaluate QOL among cancer survivors.
CONCLUSION: The prevalence of fatigue in cancer patients is high and fatigue has a negative impact on QOL of cancer patients receiving chemotherapy. Directionality, fatigue needs to be addressed and treated properly for better improvement of health status and QOL in cancer patients.
OBJECTIVE: The aim of this study is to evaluate the effectiveness of three-modal exercise on fatigue, sleep, QoL as well as to determine the relationship between age, disease severity, disease stage and working years with women diagnosed with Parkinson's disease (PD).
METHODS: In this randomized controlled trial, 44 female educators in stages I-II with PD who were between the ages of 40 and 60 volunteered. For a total of 36 sessions over the course of six weeks, Group A received a three-modal fitness program through online video sessions, whereas Group B received Nordic walking. The outcome measures included the Fatigue Severity Scale, Parkinson's Disease Sleep Scale, and Parkinson's Disease Quality of Life Questionnaire-39.
RESULTS: Age, Hoehn and Yahr scale, working years, and PD in years did not correlate with each other (p > 0.50). The three-modal exercise experimental Group A showed statistically significant improvement in QoL (p 0.001), sleep (p 0.001), and fatigue (p 0.001).
CONCLUSION: Women in the field of education who participated in a three-modal exercise programme for PD reported a significant improvement in their level of exhaustion, sleep patterns, and quality of life.
AIMS: This study aims to investigate the effect of cosmetic products on users' quality of life in eight Arab countries.
METHODS: A cross-sectional study was carried out using an online data collection approach. A validated and specialist instrument tool called BeautyQoL, which consists of five domains and a total of 52 questions, was distributed to a sample of 2219 cosmetic users. Descriptive and inferential statistical analysis was done using SPSS® version 26.0.
RESULTS: The mean age of participants was 34 ± 11.25 years, and more women were represented in the sample (71%) than men. The majority of respondents had oily skin type (39.6%) and tan skin tone (30.4%). QoL through cosmetic use is computed with a mean score of 51 out of 100. The users' mean score satisfaction from cosmetic use is centred on attractiveness (56.1), followed by self-confidence (51.8). Cosmetics have a statistically significant effect on participants who are young adults, women, single, and employed with high income. As the respondents' skin tone deepens from very fair to dark, the mean score for each domain significantly increases, whereas when skin type changes from very oily to dry, the mean score for each domain decreases.
CONCLUSION: The effect of cosmetics on the users' QoL is limited, contrary to the narrative commonly portrayed in cosmetics' advertisements. Therefore, the use of cosmetics among the Arab population should be from an informed perspective of their specific needs instead of conforming to the viral trends pedaled by influencers and bloggers on social media, which might be irrelevant for them.
METHODS: A cross-sectional observational study was conducted using a convenience sample technique. The translation procedure included five stages: forward translation, revision of translation, backward translation, refinement of translation, and a final test of the pre-final version. The final sets of questionnaires were constructed using an online JotForm platform. The online platform was chosen to automatically calculate the questionnaire's final overall score. Overall, 260 participants were instructed to fill out the English and the Arab-OSDI version twice to conduct the reliability of the translated version and repeatability evaluation.
RESULTS: The mean age of the participants was 33.45 ± 11.74 years old. Cronbach's alpha for all items was greater than 0.80, except for the "blurred vision" and "deteriorating vision" items (0.77 and 0.74, respectively). The mean overall score difference between the English-OSDI and Arab-OSDI was 0.86 based on the Bland-Altman chart. For repeatability, no significant difference in the overall scores between the two repeats of the Arab-OSDI (p = 0.632). The Arab-OSDI overall score (sessions 1 and 2) has a clinical difference (bias) of 0.21. Using the varimax rotation method, only three factors (ocular symptoms, vision-related function, and environmental triggers) had eigenvalues greater than one in the structure of the Arab-OSDI.
CONCLUSION: The Arab-OSDI is an appropriate, reliable, and repeatable tool for the determination of dry eye symptoms, ocular discomfort, and quality of life in the Gazan population. This version could remove the language barrier in answering OSDI items more easily.
METHODS: A cross-sectional study was conducted on T2DM patients at a tertiary hospital outpatient using the Malay and English version of the EQ-5D-5L questionnaire. Health utility values were derived using the Malaysian EQ-5D-5L value set. Ordinary least squares (OLS) multivariable regression model was used to estimate the health utility decrements associated with T2DM-related complications and clinical characteristics.
RESULTS: A total of 513 T2DM patients were recruited. Overall, pain was the most affected of all five EQ-5D-5L dimensions. Patients with foot ulcer, amputation, severe heart failure and frequent hypoglycemia reported more problems collectively in all EQ-5D-5L dimensions. Older age, lower education level, longer duration of T2DM, urine protein creatine index (UPCI) > 0.02 g/mmol, and injection therapy were significantly associated with lower EQ-5D-5L utility values (p
METHODS: In a cross-sectional design, 3,380 college students (60% females; age = 22.7 ± 5.4) from four continents (Africa: 32%; America: 5%; Asia: 46%; and Europe: 15%; others: 2%) completed the Pittsburgh Sleep Quality Index (PSQI); Insomnia Severity Index (ISI); Epworth Sleepiness Scale (ESS); the Depression, Anxiety, and Stress Scale 21 (DASS); the International Physical Activity Questionnaire short-form (IPAQ); and the World Health Organization Quality of Life-BREF (WHOQOL-Brief).
RESULTS: We showed that sleep quality, insomnia, and depression had direct negative effects on the physical domain of QOL (β = -0.22, -0.19, -0.31, respectively, p life.
METHODS: A cross-sectional study was conducted in two tertiary hospitals, specifically the pediatric ophthalmology services at Hospital Selayang and Universiti Sains Malaysia, spanning from 2019 to 2020. Participants aged between 8 and 15 years were categorized into two groups: those diagnosed with VKC and healthy children serving as the control group. Each participant completed the Quality of Life in Children with Vernal Keratoconjunctivitis (QUICK) questionnaire, consisting of 16 questions, divided into two subscales: 12 questions focusing on symptoms and four questions for daily activities.
RESULTS: A total of 240 children took part in the study, with 120 children diagnosed with VKC and another 120 in the control group. The mean age of participants with VKC was 11.21 ± 1.91 years, with a male predominance of 4:1 compared to female. Tearing (98.4%) and itchiness (98.3%) emerged as the most prevalent symptoms affecting HRQoL, while the most challenging activities were outdoor play (36.6%) and participation in recreational water activities (34.2%). The mean total score was significantly higher in the VKC group compared to the control group. Additionally, both the mean total score and all subscale scores were significantly higher in the severe type compared to the mild-moderate type.
CONCLUSIONS: VKC significantly reduce the HRQoL among Malaysian children, and the negative impact increases with the disease severity.