Patient-reported Flares in Ankylosing Spondylitis: A Cross-sectional Analysis of 234 Patients

2016 ◽  
Vol 44 (4) ◽  
pp. 425-430 ◽  
Author(s):  
Charlotte Jacquemin ◽  
Walter P. Maksymowych ◽  
Annelies Boonen ◽  
Laure Gossec
Keyword(s):  
Quality Of Life ◽  
New York ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Self Report ◽  
Life Questionnaire ◽  
Related Factors ◽  
Cross Sectional ◽  
Patient Reported

Objective.Ankylosing spondylitis (AS) is characterized by periodic flares. The objective of this study was to assess the frequency of patient-reported flares and their related factors.Methods.This cross-sectional study analyzed the 2004 data of a Canadian cohort. Participants had AS according to the modified New York criteria. Current flare status (“Are you experiencing a current flare”?), number of flares over the past 3 months, their average duration, the Bath Ankylosing Spondylitis Disease Activity and Functional Index (BASDAI and BASFI, respectively), and the AS Quality of Life questionnaire were assessed by self-report. Univariate and multivariate regressions analyzed the factors associated with current flare.Results.Among 234 analyzed patients, 169 (73.5%) were men, mean age was 45.5 (± 11.8) years, mean disease duration of 21.7 (± 11.7) years, and mean BASDAI and BASFI (0–10) of 4.4 (± 2.3) and 3.4 (± 2.6), respectively; 18 (7.7%) received antitumor necrosis factor (anti-TNF). Overall, 175 patients (74.8%) reported flares and 117 (50%) were currently in flare. Patients reporting flares had a median of 3 flares in 3 months, with a median duration of 2 weeks. Overall, the 234 patients spent a median of 25% of their time in flare. In multivariate analyses, current flare was significantly associated with higher BASDAI (OR 2.01, p = 0.01), worse quality of life (OR 1.37, p = 0.004), shorter AS duration (OR 1.19, p = 0.04), and less anti-TNF (OR 7.14, p = 0.03).Conclusion.In this population, before the wide use of biologics, flares were frequent and long. As expected, flare was associated with higher disease activity, suggesting the validity of the concept of patient-reported flares.

P018 Functional impairment in enthesitis related arthritis patients

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Hanene Ferjani ◽  
Hiba Bettaieb ◽  
Lobna Ben Ammar ◽  
Kaouther Maatallah ◽  
Dorra Ben Nessib ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Functional Status ◽  
Functional Impairment ◽  
Morning Stiffness ◽  
Life Questionnaire ◽  
Enthesitis Related Arthritis ◽  
Asas Criteria

Abstract Background Enthesitis related arthritis (ERA) is a subgroup of juvenile idiopathic arthritis. It is characterized by the presence of enthesitis and predominately lower limb arthritis and can affect sacroiliac joint and spine. Recent studies showed that ERA is associated with worse physical status and poorer quality of life (1). The main objective of this study was to compare the aspects of functional status in patients (ERA) and patients with spondyloarthritis (SpA). Methods A retrospective monocentric study was carried out on patients with ERA (ILAR criteria) or SpA (ASAS Criteria). Demographic data and clinical characteristics were obtained from medical records. Disease activity was evaluated by: erythrocyte sedimentation rate (ESR), C-reactive protein rate (CRP) and Bath Ankylosing Spondylitis Disease Activity Index (BASDAI). Functional impairment was evaluated by Bath Ankylosing Spondylitis Functional Index (BASFI) and Ankylosing Spondylitis Quality of life Questionnaire (ASQoL). Global well-being was assessed by Bath Ankylosing Spondylitis Global Index (BASGI). Population was divided into two groups: group 1 (G1) stands for ERA patients and group 2 (G2) stands for SpA patients. P < 0.05 was considered statistically significant. Results A total of 174 patients (40 ERA and 134 SpA) were enrolled. Mean age at disease onset was 12.4 ± 3 years in G1 and 27.8 ± 8 years in G2. Male to female sex ratio was 5.6 in G1 and 3.7 in G2. Morning stiffness (>60 min) was reported by 37.5% of G1 and 49.3%. G1 patients had longer morning stiffness than G2 (61 [0–90] min vs 30 [0–240] min; P = 0.58). Multiple nocturnal awakenings were reported by 45% of G1 patients and 58.2% of G2 patients. Median BASDAI score was 4.9 [1–44] in G1 and 4.5 in G2 [0–10] (P = 0.48). Median BASGI score was 6 [1.5–9.5] in G1 and 6 [0–10] in G2 (P = 0.58). Median ESR was 35 mm/h [8–90] in G1 and 35 mm/h [2–125] in G2. Median CRP was 18.2 mg/l [1–70] in G1 and 13 mg/l [3–180] in G2. The assessment of functional status revealed that G1 patients had higher BASFI scores than G2 patients (5.2 vs 4.5). The association between G1 and BASFI was statistically significant (P = 0.05). Median ASQoL was 12 [2–17] in G1 and 9 [0–18] in G2. No link was noted between G1 and ASQoL score (P = 0.152). Conclusion Our study showed that ERA was associated with higher BASFI scores in comparison with SpA. Treat-to target strategies are mandatory in order to optimize the functional status of children with ERA.

scholarly journals Factors associated with disease-specific quality of life in Taiwanese patients with ankylosing spondylitis: a cross-sectional study

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e028966
Author(s):  
Ming-Chi Lu ◽  
Kuang-Yung Huang ◽  
Chien-Hsueh Tung ◽  
Bao-Bao Hsu ◽  
Cheng-Han Wu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Cross Sectional Study ◽  
Dietary Habit ◽  
Sectional Study ◽  
Cross Sectional ◽  
Factors Associated ◽  
Disease Specific

ObjectiveThe aim of this study was to assess the factors associated with disease-specific quality of life in Taiwanese patients with ankylosing spondylitis.DesignA cross-sectional study.SettingA regional teaching hospital in southern Taiwan.ParticipantsAdult patients with ankylosing spondylitis recruited from the outpatient rheumatology clinics of the study hospital.Primary outcome measureDisease-specific quality of life assessed by the Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL).ResultsOf the 265 patients, 57% were 20–49 years of age, with a male preponderance (75.5%). Multiple stepwise linear regression analysis indicated that a higher disease activity, assessed by the Ankylosing Spondylitis Disease Activity Score, was significantly and independently associated with a lower quality of life in all four domains (physical function, disease activity, emotional well-being and social participation) of the EASi-QoL. In addition, various independent factors, including educational level, nature of occupation, disease duration, dietary habit and body mass index, were significantly associated with different domains of the EASi-QoL.ConclusionsOur findings indicated that, in addition to disease activity and perceived health status, a number of other factors could significantly impact the different aspects of quality of life in patients with ankylosing spondylitis, which warrant special consideration and support from healthcare providers.

scholarly journals Health-related quality of life in porphyria cutanea tarda: a cross-sectional registry based study

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Janice Andersen ◽  
Janne Thomsen ◽  
Åshild Rostad Enes ◽  
Sverre Sandberg ◽  
Aasne K. Aarsand
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Porphyria Cutanea Tarda ◽  
Bodily Pain ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract Background Porphyria cutanea tarda (PCT) is a rare, photosensitive disease characterized by skin fragility and blistering on sun-exposed areas. There is little previous research on how this condition affects health-related quality of life (HRQoL) and to the best of our knowledge this is the largest sample of PCT patients surveyed about their HRQoL. The aims of this study were to describe HRQoL, symptoms, susceptibility factors, disease activity and treatment in patients with PCT, and investigate the associations between these factors. Methods This is a cross-sectional, retrospective study based on patient-reported outcome and laboratory data. The Norwegian Porphyria Centre diagnoses all patients with PCT in Norway, all of whom are invited to participate in the Norwegian Porphyria Registry. Between December 2013–2015, 111 patients received a postal questionnaire and invitation to participate. Results Sixty-eight persons responded, with seven being excluded due to prolonged response time or missing information, resulting in 61 participants in the final analyses (55%). Median age was 60 years and 33 were female. We found a moderate negative relationship between the type and localisation of PCT symptoms and both mental (r = −.354 p < 0.01) and physical (r = −.441, p < 0.01) aspects of HRQoL. Participants who had started treatment when answering the questionnaire reported significantly better physical functioning and less bodily pain than those who had not started treatment. We did not observe an association between biochemical markers of disease activity and symptoms or HRQoL. Itching, a symptom that has received little attention in PCT was reported by 59% of the participants. Conclusions Our results show that reduced HRQoL is associated with more symptoms and not having started treatment. PCT is a rare disease, and there is a need for the development of best-practice guidelines to facilitate good patient care.

scholarly journals Children with Cerebral Palsy and their Quality Of Life in Nepal

2018 ◽  
Vol 37 (2) ◽  
pp. 122-128
Author(s):  
Niti Shrestha ◽  
Sabitra Paudel ◽  
Ritesh Thapa
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Classification System ◽  
Cross Sectional Study ◽  
Self Report ◽  
Emotional Wellbeing ◽  
Related Factors ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

Introduction: Cerebral Palsy (CP) may affect individual’s everyday life and it may have significant impact on quality of life (QOL). The objective of this study was to assess the quality of life of children with Cerebral Palsy in Nepal.Material and Methods: This is a descriptive cross sectional study that involved 42 children between 4 and 12 years of age. The Socio-demographic variables were obtained from interviews and CP related factors were obtained from medical reports. Validated CP-QOL child self-report and parent proxy version of questionnaire was used for data collection. Severity was assessed using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication function Classification System (CFCS) and ICD-10 Classification System. Data were summarized using descriptive statistics. Kruskal Wallis and Man Whitney was used to find out association between Cerebral Palsy related factors and Quality of Life.Results: 57.1% (n=24) were between 8 and12 years of age and 42.9% (n=18) were between 4 and 8 years of age. Overall QOL was reported to be fairly good. Both the child and Caregiver gave highest score on “Social wellbeing and acceptance” and “Emotional wellbeing and self-esteem domain” and Lowest Point in “Pain and Impact of disability”. This implies that Psychosocial Quality of Life is good in children with CP. Quality of Life as reported by child was better than Quality of Life reported by Caregiver.Conclusion: Overall QOL is fairly good in children with CP. However, Pain and impact of disability impairs QOL.

scholarly journals Five Potentially Modifiable Factors Predict Poor Quality of Life in Ankylosing Spondylitis: Results from the Scotland Registry for Ankylosing Spondylitis

2017 ◽  
Vol 45 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Linda E. Dean ◽  
Gary J. Macfarlane ◽  
Gareth T. Jones
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Physical Function ◽  
Spinal Mobility ◽  
Factors Associated ◽  
Modifiable Factors ◽  
Chronic Inflammatory Condition ◽  
Patient Reported

Objective.A chronic inflammatory condition manifesting in young adulthood, ankylosing spondylitis (AS) affects both physical and emotional quality of life (QOL). To inform future intervention strategies, this study aimed to (1) assess the QOL of patients with AS, and (2) identify potentially modifiable factors associated with reporting poor QOL.Methods.The Scotland Registry for Ankylosing Spondylitis collects clinical and patient-reported data on clinically diagnosed patients with AS across Scotland. QOL is measured using the ASQoL questionnaire [range: 0 (high) to 18 (poor)]. Potentially modifiable factors associated with reporting poor QOL (score 12–18) were examined using Poisson regression models, adjusted for a variety of demographic characteristics, plus various nonmodifiable factors. Results are given as risk ratios (RR) with 95% CI.Results.Data were available on 959 patients: 74% male, mean age 52 years (SD 13), median ASQoL 7.0 (interquartile range 2–12). Although many factors were univariately associated with poor QOL, 5 were identified as independent predictors: reporting moderate/severe fatigue (RR 1.60, 95% CI 1.13–2.28), poor physical function [Bath Ankylosing Spondylitis Functional Index (BASFI) ≥ 4: 3.46, 1.76–6.82], chronic widespread pain (CWP; 1.92, 1.33–2.75), high disease activity [Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) ≥ 4: 1.52, 1.09–2.12], and poor spinal mobility [Bath Ankylosing Spondylitis Metrology Index (BASMI) ≥ 4: 1.52, 0.93–2.50]. For these factors, population-attributable risks ranged between 20% (disease activity) and 56% (physical function).Conclusion.We have identified 5 potentially modifiable factors independently associated with poor QOL. These findings provide evidence that in addition to traditional clinical targets (BASDAI, BASFI, and BASMI), focus on nonspecific symptoms (CWP and fatigue), perhaps with nonpharmacological therapies, may yield important improvements in QOL.

scholarly journals Relationship between Quality of Life of Women-Headed Households and Some Related Factors in Iran

2016 ◽  
Vol 8 (10) ◽  
pp. 250 ◽  
Author(s):  
Mahnaz Solhi ◽  
Marziyeh Shabani Hamedan ◽  
Masood Salehi
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
World Health ◽  
Physical Aspect ◽  
Life Questionnaire ◽  
Related Factors ◽  
Cross Sectional ◽  
Environmental Aspect ◽  
The Relationship

<p><strong>BACKGROUND &amp; AIM</strong><strong>:</strong> Women heading their households are the ones who lead their life alone. Burden of life probably decreases the quality of life of women-headed households. The aim of this study is to determine the relationship between quality of life of women-headed households and some related factors in Iran.</p><p><strong>METHODS</strong><strong>:</strong> The study was a cross-sectional study and 180 women-head households were selected from Welfare Organization, Tehran Province, using stratified random sampling method in 2015(January up to April). Social World Health Organization's quality of life questionnaire was used to gather information. The data were analyzed using SPSS statistical software (15) and suitable descriptive and analytical methods were applied.</p><p><strong>RESULTS: </strong>Quality of life was moderate in the studied women. The <em>highest mean score </em>(50.35) <em>was</em> related to the physical aspect and the lowest <em>mean </em>(37.82) was about the environmental aspect.</p><p><strong>CONCLUSION:</strong> Quality of life of the studied women is not desirable; so, it is necessary to design appropriate interventions to improve their quality of life.</p>

scholarly journals Determining the sexual quality of life and related factors in patients referred to the department of cardiac rehabilitation: A cross-sectional study

2021 ◽  
Author(s):  
Iman Taqizade Firoozjaei ◽  
Mohsen Taghadosi ◽  
Zohre Sadat
Keyword(s):  
Quality Of Life ◽  
Artery Bypass ◽  
Cross Sectional Study ◽  
Life Questionnaire ◽  
Sexual Knowledge ◽  
Sectional Study ◽  
Related Factors ◽  
Cross Sectional ◽  
Sexual Quality Of Life

Background: One of the neglected issues among cardiovascular participants is sexual activity, which can affect their general quality of life. Objective: To evaluate the sexual quality of life and its related factors. Materials and Methods: This cross-sectional study was conducted on 200 cardiovascular participants, referred to the department of rehabilitation of the Shahid Beheshti Hospital of Kashan, Iran in May 2017. Individuals who met the inclusion criteria filled the demographic characteristics questionnaires, including sexual quality of life questionnaire (SQOL)-female and SQOL-male, sexual knowledge post-myocardial infarction scale (SKS-MI), sexual knowledge after coronary artery bypass grafting surgery scale (SKS-CABG), and couple communication scale (CCS). Results: In this research, the mean score of SQOL of the participants was 50.02 ± 22.57. According to the results, there was a significant and positive association between the scores of SQOL and CCS (r = 0.540, p ≤ 0.0001), SKS-MI (r = 0.322, p = 0.006), and SKSCABG (r = 0.178, p = 0.046). The maximum association was observed between SQOL and CCS and the minimum association between SQOL and SKS-CABG. Moreover, there was a relationship between the SQOL and participant’s age and level of education. Conclusion: According to the results of the study, the sexual quality of life scores among participants with MI and CABG was not favorable and this participant suffered from a lack of sexual knowledge. Key words: Sexual health, Patients, Cardiovascular rehabilitation.

Chronic Obstructive Pulmonary Disease and Dysphagia: What Have We Learned So Far and What Do We Still Need to Investigate?

2021 ◽  
pp. 1-10
Author(s):  
Renata Mancopes ◽  
Fernanda Borowsky da Rosa ◽  
Lidia Lis Tomasi ◽  
Adriane S. Pasqualoto ◽  
Catriona M. Steele
Keyword(s):  
Quality Of Life ◽  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Self Report ◽  
Chronic Obstructive ◽  
Life Questionnaire ◽  
Obstructive Pulmonary Disease ◽  
Volume Viscosity ◽  
Patient Reported

Purpose Dysphagia is an underrecognized concern in people with chronic obstructive pulmonary disease (COPD) and may contribute to disease exacerbations. In this review article, we share information regarding dysphagia in people with COPD, synthesizing knowledge both from the literature and from studies performed in the context of a multidisciplinary clinical pulmonary rehabilitation program at the Federal University of Santa Maria in Brazil. Results This narrative review presents evidence showing that awareness of dysphagia and patient-reported symptoms of dysphagia are rare in individuals with stable COPD. However, evidence from the routine collection of patient-reported symptom data using the Eating Assessment Tool 10 and about dysphagia-related quality of life using the Swallowing Quality of Life questionnaire do suggest that dysphagia is experienced by some individuals with COPD. Several studies suggest that patients with stable COPD present with altered swallowing physiology on videofluoroscopic exams, including silent aspiration in a small number of these individuals. However, both patient self-report and clinical screening using the Volume–Viscosity Swallowing Test have been found to be poor predictors of these videofluoroscopic findings. We discuss the possibility that altered laryngeal sensation and respiratory–swallow discoordination play a role in dysphagia in people with COPD, and highlight assessment tasks that appear to have the highest sensitivity for detecting penetration–aspiration in this population. Finally, we review preliminary evidence suggesting that physical therapy techniques targeting altered respiratory muscle biomechanics may benefit swallowing in people with COPD. Knowledge gaps requiring further research are identified, and implications for clinical practice are discussed.

scholarly journals The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey

2022 ◽  
Author(s):  
David Dingli ◽  
Joana E. Matos ◽  
Kerri Lehrhaupt ◽  
Sangeeta Krishnan ◽  
Michael Yeh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Paroxysmal Nocturnal Hemoglobinuria ◽  
Burden Of Illness ◽  
Patient Survey ◽  
Life Questionnaire ◽  
Complement Protein ◽  
Cross Sectional ◽  
European Organization ◽  
Patient Reported

Abstract Paroxysmal nocturnal hemoglobinuria (PNH) is a rare and life-threatening disease with symptoms of hemolysis and thrombosis. Current therapies for this complement-mediated disease rely predominantly on inhibition of the C5 complement protein. However, data on treatment responses and quality of life in C5-inhibitor (C5i)-treated PNH patients are scarce. The objective of this study was to determine C5i treatment effects on clinical parameters, PNH symptoms, quality of life, and resource use for PNH patients. This cross-sectional study surveyed 122 individuals in the USA receiving treatment for PNH with C5-targeted monoclonal antibodies, eculizumab (ECU) or ravulizumab (RAV). Despite most patients receiving C5i therapy for ≥ 3 months (ECU 100%, n = 35; RAV 95.4%, n = 83), many patients remained anemic with hemoglobin levels ≤ 12 g/dL in 87.5% (n = 28/32) and 82.9% (n = 68/82) of ECU and RAV recipients, respectively. A majority of patients on ECU (88.6%; n = 31/35) and RAV (74.7%; n = 65/87) reported fatigue symptoms. Among PNH patients receiving C5i therapy for ≥ 12 months, some still reported thrombotic events (ECU, 10.0%, n = 1/10; RAV, 23.5%, n = 4/17) and required transfusions within the past year (ECU, 52.2%, n = 12/23; RAV, 22.6%, n = 7/31). Other patient-reported PNH symptoms included breakthrough hemolysis, shortness of breath, and headaches. Patients reported scores below the average population norms on the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) scales. Overall, this study found that PNH patients receiving ECU or RAV therapy demonstrated a significant burden of illness, highlighting the need for improved PNH therapies.

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