Quality of life of patients living with psoriasis: a qualitative study
BackgroundPsoriasis is a multifactorial inflammatory disease prevalent in dermatology. We aimed to understand the perceptions of patients living with psoriasis in relation to their quality of life and to identify aspects to improve it.MethodsThis is qualitative research carried out in a dermatology outpatient clinic of the São Paulo State University (UNESP) medical school, Botucatu, Brazil, with 81 psoriasis patients. The interviews were transcribed and analysed using the Discourse of the Collective Subject method (DCS).ResultsQuality of life was linked to well-being, happiness, leisure, good food and financial stability. However, disease symptoms, social and clothing restrictions, impairment of professional activities and the absence of a cure, negatively influenced their perceptions. Suggestions for improvements included an increase of public awareness, stress reduction, disease acceptance and multidisciplinary care.ConclusionThe meanings of quality of life revealed by the participants are subjective, multidimensional, linked to moments experienced by them and to the health-disease process. Public health policies promoting reduction in social stigma and stress as well as multidisciplinary approaches towards care can contribute to improvements of QoL in psoriasis.
- Abstract
- 10.1016/j.ijrobp.2012.07.547
- Oct 25, 2012
- International Journal of Radiation Oncology*Biology*Physics
Improved Quality of Life (QOL) Outcomes in Patients With Head-and-Neck Squamous Cell Carcinoma (HNSCC) Treated With Intensity Modulated Radiation Therapy (IMRT) Compared to 3-dimensional Conformal Radiation Therapy (3D-CRT): Evidence From a Prospective Randomized Study
- Front Matter
639
- 10.1186/1477-7525-1-1
- Jan 1, 2003
- Health and Quality of Life Outcomes
Not-only-a-title
- Abstract
2
- 10.1182/blood-2019-123947
- Nov 13, 2019
- Blood
Improvement in Quality of Life Outcomes and Bleeding Rates among Patients Switching from On-demand FVIII to Prophylactic BAY 94-9027 in the PROTECT VIII Study
- Research Article
162
- 10.4073/csr.2012.3
- Jan 1, 2012
- Campbell Systematic Reviews
Mind-body interventions to manage stress-related health problems are of widespread interest. One of the best known methods is mindfulness-based stress reduction (MBSR), and MBSR courses are now offered by health services, as well as in social and welfare settings. In this systematic review, we report on the effects of MBSR interventions on health, quality of life, and social functioning. From the more than 3,000 potentially relevant references identified in two extensive searches, we included 31 relevant studies with an overall total of 1,942 participants, each of whom had been randomised to receive MBSR or other treatment strategies (most often a waiting list control). We utilised all outcome data published in the selected studies using a new statistical method for calculating the effect size. This method addressed the problems presented by the interdependence of many measurements of outcomes. 26 of the 31 studies were identified as having data suitable for meta-analysis. MBSR was found to have a moderate and consistent positive effect on mental health outcomes in both patients selected with somatic problems and with mild to moderate psychological problems, and among participants recruited from community settings. MBSR interventions improved outcomes measuring different aspects of personal development and quality of life. The effects on somatic health outcomes were somewhat smaller. No adverse effects were described. Few studies were found that evaluated the impact of MBSR on social functioning, such as the ability to work.
- Research Article
7
- 10.1212/wnl.0000000000200831
- Jul 5, 2022
- Neurology
In counseling patients with an unruptured intracranial aneurysm (UIA), quality of life (QoL) outcomes are important for informed decision making. We evaluated QoL outcomes in patients with and without preventive aneurysm occlusion at multiple time points during the first year after UIA diagnosis and studied predictors of QoL outcomes. We performed a prospective cohort study in patients aged ≥18 years with a newly diagnosed UIA in 2 tertiary referral centers in the Netherlands between 2017 and 2019. Patients were sent QoL questionnaires at 7 (aneurysm occlusion) or 5 (no occlusion) moments during the first year after diagnosis. We collected baseline data on patient and aneurysm characteristics, passive coping style (Utrecht Coping List), occlusion modality, and neurologic complications. We assessed health-related QoL (HRQoL) with the EuroQol 5 dimensions (EQ-5D), emotional functioning with the Hospital Anxiety and Depression Scale (HADS), and restrictions in daily activities with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P). We used a linear mixed-effects model to assess the course of QoL over time and to explore predictors of QoL outcomes. Of 153 eligible patients, 99 (65%) participated, of whom 30/99 (30%) underwent preventive occlusion. Patients undergoing occlusion reported higher baseline levels of passive coping, anxiety and depression, and restrictions than patients without occlusion. During recovery after occlusion, patients reported more restrictions compared with baseline (adjusted USER-P decrease 1 month post occlusion: -12.8 [95% CI -23.8 to -1.9]). HRQoL and emotional functioning gradually improved after occlusion (EQ-5D increase at 1 year: 8.6 [95% CI 0.1-17.0] and HADS decrease at 1 year: -5.4 [95% CI -9.4 to -1.5]). In patients without occlusion, the largest HRQoL improvement occurred directly after visiting the outpatient aneurysm clinic (EQ-5D increase: 9.2 [95% CI 5.5-12.8]). At 1 year, QoL outcomes were comparable in patients with and without occlusion. Factors associated with worse QoL outcomes were a passive coping style in all patients, complications in patients with occlusion, and higher rupture risks in patients without occlusion. After UIA diagnosis, QoL improves gradually after preventive occlusion and directly after counseling at the outpatient clinic in patients without occlusion, resulting in comparable 1-year QoL outcomes. A passive coping style is an important predictor of poor QoL outcomes in all patients with UIA.
- Research Article
6
- 10.1200/jco.21.02750
- May 16, 2022
- Journal of Clinical Oncology
Besides morbidity and mortality, quality of life (QoL) is a key outcome of cancer treatments. Trials on the basis of clinical outcomes have expectations that QoL outcomes can be either tolerated or improved. Simultaneously considering QoL and clinical outcomes is challenging with lack of suitable metrics allowing incorporation of QoL as coprimary end points in clinical trial design and utilization of hierarchical hypothesis testing. We propose combining time to achieving a minimal clinically important difference (MCID) and probabilities of a MCID occurring in each QoL domain to provide QoL metrics analogous to those used for clinical end points. For QoL domains of interest, these yield QoL profiles, time to MCID, and number needed to treat. Incorporation of QoL as coprimary end points in clinical trial designs through hierarchical hypothesis testing can easily be achieved. The noninferiority designed Laparoscopic Approach to Carcinoma of the Endometrium trial, evaluating laparoscopic versus open abdominal surgery for endometrial cancer with Functional Assessment of Cancer Therapy-General QoL domains, is used to illustrate the usefulness of these metrics. This analysis revealed that laparoscopic surgery had a significant shorter time to MCID for physical and functional well-being QoL domains (physical mean: 1.5 months, 95% CI, 0.5 to 2.6; P = .002; and functional mean: 1.4 months; 95% CI, 0.4 to 2.4; P = .003) than abdominal surgery, but little difference between the two approaches for psychologic social and emotion well-being. Probability profile plots show a consistent > 2-fold higher chance of attaining a MCID for physical and functional well-being over time for laparoscopic compared with abdominal surgery. This analysis reinforces the potential value of novel MCID metrics and their usefulness in raising the profile of QoL outcomes to complement clinical end points. The methods will allow health professionals to counsel patients about QoL outcomes and clinical outcomes simultaneously.
- Research Article
4
- 10.1186/s12903-024-04035-w
- Feb 26, 2024
- BMC oral health
BackgroundThere is a blooming trend in the application of robotic surgery in oral and maxillofacial care, and different studies had evaluated the quality of life (QoL) outcomes among patients who underwent robotic surgery in the oral and maxillofacial region. However, empirical evidence on the QoL outcomes from these procedures is yet to be mapped. Thus, this study was conducted to evaluate the available scientific evidence and gaps concerning the QoL outcomes of patients treated with robotic surgery in the oral and maxillofacial region.MethodsThis study adopted a scoping review design, and it was conducted and reported based on the Arksey and O’Malley, PRISMA-ScR, and AMSTAR-2 guidelines. SCOPUS, PubMed, CINAHL Complete, and APA PsycINFO were searched to retrieve relevant literature. Using Rayyan software, the retrieved literature were deduplicated, and screened based on the review’s eligibility criteria. Only the eligible articles were included in the review. From the included articles, relevant data were charted, collated, and summarized.ResultsA total of 123 literature were retrieved from the literature search. After deduplication and screening, only 18 heterogeneous original articles were included in the review. A total of 771 transoral robotic surgeries (TORSs) were reported in these articles, and the TORSs were conducted on patients with oropharyngeal carcinomas (OPC), recurrent tonsillitis, and obstructive sleep apnoea (OSA). In total, 20 different QoL instruments were used in these articles to assess patients’ QoL outcomes, and the most used instrument was the MD Anderson Dysphagia Inventory Questionnaire (MDADI). Physical functions related to swallowing, speech and salivary functions were the most assessed QoL aspects. TORS was reported to result in improved QOL in patients with OPC, OSA, and recurrent tonsillitis, most significantly within the first postoperative year. Notably, the site of the lesion, involvement of neck dissections and the characteristics of the adjuvant therapy seemed to affect the QOL outcome in patients with OPC.ConclusionCompared to the conventional treatment modalities, TORS has demonstrated better QoL, mostly in the domains related to oral functions such as swallowing and speech, among patients treated with such. This improvement was most evident within the initial post-operative year.
- Dissertation
2
- 10.14264/uql.2016.384
- Jul 1, 2016
The anterior cruciate ligament (ACL) serves to stabilise the knee complex and prevent intra-articular knee structures from sustaining damage during multiaxial, high impact movement. An ACL rupture most commonly occurs in adolescents and young adults taking part in competitive sports and causes substantial disruption to the knee joint. Anterior cruciate ligament reconstruction (ACLR) is the most common treatment offered to ACL-ruptured individuals worldwide. Individuals undergoing this surgery often have high expectations that rarely match surgical outcomes. Return to sport rates are low, re-injury fears are widespread and many individuals develop knee osteoarthritis within ten years of ACLR. This mismatch between expectations and actual outcomes has great potential to impact longer-term quality of life (QOL). The primary aims of this thesis were to: (i) generate a detailed picture of longer-term QOL following ACLR, and (ii) identify factors related to longer-term QOL in people with knee pain, symptoms or functional limitations following ACLR. The first study in this thesis is a systematic review that revealed impaired knee-related QOL at 5 to 20 years after ACLR. However, it became evident that research into factors impacting upon QOL in this population was scarce. The systematic review found that having a subsequent knee injury, an additional knee surgery after ACLR, and developing severe radiographic osteoarthritis were associated with worse QOL outcomes. The second study in this thesis is a systematic review that investigated QOL more than five years after ACL rupture in individuals who remained ACL-deficient (did not undergo ACLR) and compared QOL between ACL-deficient and ACL-reconstructed groups. This systematic review found that ACL-deficient individuals reported comparable QOL outcomes to those who underwent ACLR 5 to 25 years previously. All studies that reported QOL after ACLR included asymptomatic participants without knee difficulties, which may underestimate the degree of QOL impairment experienced by people with ongoing knee difficulties. The third study in this thesis used a cross-sectional design to describe QOL outcomes in 162 individuals with knee pain, symptoms or functional limitations 5 to 20 years following ACLR. It showed that individuals who did not return to sport after ACLR reported poorer knee-related and health-related QOL, compared to people who returned to pre-injury levels of sport. Higher body mass index (BMI) and subsequent surgery were also related to worse QOL after ACLR. This was the first study to show that return to sport was associated with QOL impairment more than five years after ACLR. However, quantitative assessment of QOL may overlook important considerations with regard to an individual’s life priorities, expectations, values and concerns. To provide a detailed understanding of QOL following ACLR, qualitative interviews were performed with 17 individuals with knee difficulties 5 to 20 years following ACLR. This was the first qualitative study to explore QOL following ACLR. In these individuals, maintaining a physically active lifestyle was a critical feature of a satisfactory QOL and individuals with a strong preference for competitive sport who did not enjoy recreational exercise appeared to be at risk of experiencing prolonged periods of poor QOL. Fear of re-injury and lifestyle modifications following ACLR were also strong determinants of QOL. Furthermore, exploring personal perspectives of QOL following ACLR provided unique insights into the trajectory of QOL over time that had not been addressed in previous ACLR studies. This allowed identification of key points of transition, where intervention to facilitate positive lifestyle modifications could be most beneficial. The high rates of early knee osteoarthritis after ACLR are alarming considering the young, active population in which ACLR is most prevalent. The impact of living with symptomatic radiographic osteoarthritis on the QOL of ACL-reconstructed individuals is poorly understood. The fifth study in this thesis explored the relationship between radiographic osteoarthritis and QOL, psychological factors, participant characteristics, work limitations, return to sport and knee symptoms in 81 ACL-reconstructed individuals with knee difficulties. This study found five factors that were strongly associated with increased odds of having radiographic knee osteoarthritis: knee-related QOL impairment, dissatisfaction with knee function, having an ACLR more than six months after ACL injury (compared to less than six months), a non-contact mechanism of ACL rupture and receiving at least one additional surgery since ACLR. In summary, this thesis identified key factors associated with longer-term QOL impairment in people with knee difficulties after ACLR. However, not all individuals with persistent knee symptoms and difficulties after ACLR were dissatisfied with their current knee function. Achieving satisfactory knee-related QOL appears achievable for some individuals irrespective of the presence of knee pain, osteoarthritis and reduced participation in high-level activities. By identifying specific factors related to unsatisfactory QOL following ACLR, this research has provided valuable information that may facilitate a greater clinical and research focus on improving longer-term QOL following ACLR.
- Research Article
2
- 10.24321/0019.5138.201911
- Aug 28, 2019
- Journal of Communicable Diseases
Introduction: The paper attempts to assess quality of life (QOL) outcomes at facet level and the factors affecting it to gain micro level understanding of the disease burden and to highlight key problematic areas faced by people living with HIV/AIDS (PLHA) in Manipur, India. Materials and Methods: A cross-sectional study with 200 PLHA (≥18 years of age) were recruited from 4 NGO centers in Imphal and Chandel using WHOQOL-HIV instrument. ANOVA and logistic regression tests were performed to compare and predict factors influencing QoL outcomes respectively. Results: In the ANOVA model, Physical and social relationships domains (<11) in Imphal, and SRPB and physical domains (<11.20) in Chandel showed poorest QOL outcomes. QOL outcome was reported poor for most facets across the six domains. Financial resources emerged as the worst affected QOL outcomes for both localities followed closely by dependence on treatment, HIV symptoms for Imphal and SRPB, concern about the future for Chandel. In the regression model, employment, clinical status, locality, gender and marital status emerged as significant predictors affecting QoL outcomes. Conclusion: Investments to improve better infrastructure, healthcare services, connectivity, and financial intervention for self-reliance and HIV/AIDS education including safer sex practices could positively affect QoL outcomes in many of the facets.
- Research Article
- 10.1161/circ.132.suppl_3.11614
- Nov 10, 2015
- Circulation
Background: Heart failure (HF) is associated with inflammation characterized by the formation of a protein complex, the inflammasome that triggers maturation of inflammatory cytokines. Inflammation in HF is associated with lower quality of life (QOL), depression, and poor outcomes. ASC, a vital component of the inflammasome, is controlled through epigenetic modification via methylation of CpG islands surrounding exon 1, and this methylation is a candidate pathway of worsening HF. The purpose of this study is to examine the relationships between ASC methylation and clinical, psychological, and QOL outcomes in HF. Methods: Stored samples from 155 HF outpatients (age 56.9±12.0 years, 64% male, 47% black, and mean LVEF 29.9±14.9) were analyzed for % methylation of seven CpG sites in the intron region preceding exon 1 of the ASC gene using pyrosequencing of bisulfite treated genomic DNA. Clinical, QOL (Kansas City Cardiomyopathy Questionnaire), and psychological (Patient Health Questionnaire [PHQ-9]) outcomes were assessed. Two-year combined clinical endpoint (death, heart transplantation, ventricular assist device implantation, or all-cause hospitalization) was analyzed. Results: Mean total ASC methylation was 5.96±0.55%. ASC methylation was inversely related to ASC mRNA (r=-.33, p<0.001) and protein (r=-.464, p<.001). ASC methylation had a positive linear relationship with ejection fraction (r=.81, p<.001) and six-minute walk distance (r=.63, p=.005). ASC methylation had a negative linear relationship with PHQ-9 scores (r=-.65, p<.001) and a positive linear relationship with QOL (r=.83, p<.001). Combined clinical endpoint occurred in 71% (N=110) of participants. Higher levels of ASC methylation were associated with lower odds of clinical endpoint (odd ratio=0.43, 95% CI .187, .997, p=.049), while higher levels of ASC protein expression were associated with higher odds (OR=1.27, 95% CI 1.04,1.54, p=.016). Conclusion: Increased methylation of CpG sites in the intron region of ASC is associated with improved clinical, psychological and QOL outcomes in HF. The associated decrease in ASC expression implicates this inflammatory mediator as a possible driver of HF outcomes, and may represent a therapeutic target.
- Research Article
39
- 10.1016/j.brs.2018.02.015
- Feb 24, 2018
- Brain Stimulation
Short-term quality of life after subthalamic stimulation depends on non-motor symptoms in Parkinson's disease
- Research Article
- 10.1093/ecco-jcc/jjae190.1260
- Jan 22, 2025
- Journal of Crohn's and Colitis
P1086 Achieving early symptom resolution and endoscopic outcomes is associated with improved long-term outcomes in ulcerative colitis: A post-hoc analysis of INSPIRE and COMMAND studies
- Research Article
- 10.1161/str.56.suppl_1.wp119
- Feb 1, 2025
- Stroke
Background: Given the growing number of stroke survivors in the US, especially among women, understanding contemporary sex-specific trajectories of outcomes after stroke is crucial. Yet, such data are rare. We estimated sex-specific functional, neurological, cognitive, and quality of life outcomes at 3, 6, and 12 months post-stroke in a population-based study. Methods: First-ever ischemic strokes (IS) were ascertained between January 1, 2014 and December 31, 2019 from the Brain Attack Surveillance in Corpus Christi (BASIC) Project in South Texas. Data were collected from medical records and patient or proxy interviews (baseline, 3, 6, and 12 months after stroke). Sex-specific trajectories in functional (activities of daily living/instrumental activities of daily living score, ADL/IADL), neurological (National Institutes of Health Stroke Scale, NIHSS), cognitive (Modified Mini-Mental State Examination), and quality of life (QOL) outcomes (12-domain Stroke-specific Quality of Life scale) were estimated using multivariable-adjusted linear mixed effect models accounting for within-subject correlations. Interactions between sex and time were included to examine sex differences at each time point. Results: Among the 1,440 IS (median age 68, 48.4% women), women had significantly worse functional outcomes (0.11 points higher in ADL/IADL score) but better neurological outcomes (0.33 points lower in NIHSS score) than men at 3 months (Table 1). There were no sex differences in quality of life and cognitive outcomes. Throughout the one year following stroke, functional and neurological outcomes among both sexes improved, primarily driven by the improvement between 3 to 6 months, with small changes in the outcomes on the absolute scale (Table 2). Improvement in quality of life was only seen among women between 3 to 6 months, while worsening of cognitive outcome between 6 to 12 months was seen among both sexes. There were no significant sex differences for all outcomes at 6 or 12 months and no significant interactions between sex and time. Conclusions: Functional and neurological outcomes were at their worst at 3 months after stroke for both sexes and sex differences were small throughout the one-year poststroke, suggesting early assessment and intervention to improve these outcomes in both sex groups. The considerable worsening of cognition after 6 months post-stroke in both sexes suggests that longer-term monitoring of cognitive outcome may be needed.
- Research Article
213
- 10.1016/j.ijrobp.2007.04.021
- Jun 8, 2007
- International Journal of Radiation Oncology*Biology*Physics
Impact of Radiation-Induced Xerostomia on Quality of Life After Primary Radiotherapy Among Patients With Head and Neck Cancer
- Research Article
302
- 10.1097/01.mlg.0000182825.82910.80
- Dec 1, 2005
- The Laryngoscope
To assess objective and quality of life (QOL) outcomes before and after endoscopic sinus surgery (ESS) in patients with chronic rhinosinusitis (CRS) and to determine preoperative factors that predict surgical outcome in these patients. One hundred nineteen adult patients with CRS and a mean follow-up of 1.4 +/- 0.35 years were evaluated prospectively including the following patient factors: prior sinus surgery, polyps, asthma, acetylsalicylic acid intolerance (ASA), smoking, allergy, depression, and sex. Computed tomography (CT), endoscopy, and QOL assessment was performed. Predictive value of patient factors was determined based on change in endoscopy and QOL scores after ESS. Objective outcomes: preoperative CT scores were significantly worse in patients with polyps, asthma, and ASA, whereas CT score was unaffected by prior sinus surgery, smoking, allergy, depression, and sex. Patients with CRS demonstrated significant improvement on nasal endoscopy after ESS, but preoperative, postoperative, and change in scores were affected by certain patient factors. Endoscopy scores were significantly worse in patients with prior sinus surgery, polyps, asthma, and ASA, but these patients also experienced the greatest improvement in endoscopy scores. Smokers and patients with depression had the least change in endoscopy scores. QOL outcomes: patients with CRS experienced improvement in QOL after ESS. Pre- and postoperative QOL was positively affected by polyps and adversely affected by ASA, depression, and female sex, but these groups still experienced significant improvement in QOL scores. Pre- and postoperative QOL was unaffected by prior sinus surgery, asthma, smoking, and allergies, and all of these groups experienced significant improvement in QOL scores. Factors predictive of outcome: ASA and depression were predictive of worse outcome. Preoperative CT scores approached significance as being predictive of outcome. Surgical management of CRS was associated with significant improvement on objective and QOL measures; however, specific patient factors, in particular ASA and depression, predict poorer outcome. Preoperative CT may be a predictor of endoscopic and QOL outcome and deserves further study.
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