The impact and cost of axial spondyloarthritis

Author(s):  
Stefan Siebert ◽  
Sengupta Raj ◽  
Alexander Tsoukas

Patients with ankylosing spondylitis (AS) and axial spondyloarthritis (axSpA) consistently report lower health-related quality of life compared to the general population. The effects of the condition include factors such as pain, reduced mobility, poor sleep, fatigue, and depression, with a similar burden of disease in patients with non-radiographic axSpA and established AS. The impact of fatigue and factors associated with fatigue in axSpA are discussed. AxSpA also significantly impacts on social and work participation. Patients with AS have lower work participation and are more likely to retire earlier than the general population. Those patients in work have reduced work productivity, due to absenteeism (ability to attend work) and presenteeism (productivity while at work) as a result of the condition. The financial cost of AS varies significantly between countries; estimates for the costs in the UK are discussed.

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S575-S576
Author(s):  
G Parkes ◽  
A Akbar ◽  
I Beales ◽  
M Buckley ◽  
T Creed ◽  
...  

Abstract Background Patients with inflammatory bowel disease (IBD) experience substantial impairment in health-related quality of life (HRQoL), therefore HRQoL endpoints are considered important measures of treatment outcome. OCTAVO evaluated the effects of vedolizumab on HRQoL, work productivity and patient concerns in IBD patients in the UK and Ireland. Methods OCTAVO is an ongoing multicentre, observational study to evaluate the impact of vedolizumab on two cohorts. Cohort 1 examined the impact of vedolizumab on concomitant medications compared with anti-TNFs in biologic naïve patients with ulcerative colitis (UC). Cohort 2 was non-comparative and observed changes in patient reported outcomes (PROs) in patients with UC and Crohn’s disease (CD) prescribed vedolizumab at any point in the treatment pathway. PROs are assessed by Short Inflammatory Bowel Disease Questionnaire (SIBDQ), IBD-Control-8 (IBD-C-8), Work Productivity and Activity Impairment (WAPI) and Rating Form of IBD Patient Concerns (RFIPC). PROs are collected prospectively at baseline, Week 14, 6 months and 12 months post-initiation via online questionnaires. The results of an interim analysis of Week 14 PROs for patients aged ≥18 years newly initiated on vedolizumab enrolled across 7 hospital sites in Cohort 2 are reported here. Results Sixty-one patients (21 CD, 40 UC; 51% male) were recruited, with a median age of 39.0 (IQR 32.0–55.0); and median disease duration of 9.6 years (IQR 1.7–17.2) for CD and 5.6 years (IQR 1.3–17.4) for UC. Mean total SIBDQ scores at Week 14 were: 45.2 for CD; 50.0 for UC. Scores increased by 8.5 points in CD patients and 10.2 points in UC patients in the first 14 weeks of the study. Similarly, improvements in IBD-C-8, WPAI-UC/CD sub-scores and RFIPC were observed in both CD and UC (Table 1). Conclusion Vedolizumab treatment was associated with meaningful improvements in PROs at Week 14. Improvements were seen across all measures (SIBDQ, IBD-C-8, WPAI-CD/UC and RFIPC) and were similar between CD and UC. Further investigation of vedolizumab on PROs in the real world is required to assess impact in the longer-term, the full analysis of OCTAVO at months 6 and 12 will help to provide this.


2011 ◽  
Vol 108 (9) ◽  
pp. 1459-1471 ◽  
Author(s):  
Karin S. Coyne ◽  
Chris C. Sexton ◽  
Zoe S. Kopp ◽  
Caty Ebel-Bitoun ◽  
Ian Milsom ◽  
...  

Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.


2017 ◽  
Vol 26 (9) ◽  
pp. 2265-2285 ◽  
Author(s):  
Laura Behan ◽  
Bruna Rubbo ◽  
Jane S. Lucas ◽  
Audrey Dunn Galvin

Abstract Background Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. The aim of this study is to critically review, analyse, and synthesise the literature in order to understand the experiences of patients with primary ciliary dyskinesia (PCD) and the impact on health-related quality of life. Method MEDLINE, EBSCO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO and EMBASE were searched according to the inclusion criteria. A qualitative analysis of 14 studies was conducted. Results Fourteen studies were included in the review, five with qualitative methodologies. Studies originated from the UK, USA, Italy, Denmark and Belgium, one study included a survey distributed internationally. Significant relationships were found between age and worsening of respiratory symptoms, physical, and mental domains of health-related quality of life, with a greater decline compared with reference populations. Variations between the UK and Italy were found for health-related quality of life and its correlation with time since diagnosis. PCD was found to have a physical impact in all age groups: patients found it difficult to keep up with others, and found energy levels were easily depleted compared to family or peers. In terms of social impact, symptoms lead to embarrassment and a sense of isolation, with patients concealing symptoms and/or their diagnosis. In turn, isolation was also linked with the lack of public and medical knowledge. In relation to emotional impact, anxiety was reported in a number of qualitative studies; patients were anxious about getting sick or when thinking about their future health. The burden of treatment and factors influencing adherence were also discussed in depth. Conclusion Health-related quality of life decreases with age in patients with PCD. For all age groups, PCD was found to greatly impact physical, emotional, social functioning, and treatment burden. More research is needed on the psychosocial impact of the illness, disease burden and its effect on quality of life.


2017 ◽  
Vol 49 (12) ◽  
pp. 943-950 ◽  
Author(s):  
Marieke Velema ◽  
Aline de Nooijer ◽  
Vivian Burgers ◽  
Ad. Hermus ◽  
Henri Timmers ◽  
...  

AbstractThe aim of this review was to determine the impact of primary aldosteronism on health-related quality of life (HRQoL) and mental health. We performed a systematic literature search up to July 2017 in six electronic databases. First, we screened the articles derived from this search based on title and abstract. Second, the selected studies were systematically reviewed and checked for our predefined inclusion criteria. The search yielded 753 articles, of which 15 studies met our inclusion criteria. Untreated patients with primary aldosteronism showed an impaired physical and mental HRQoL as compared to the general population. Multiple domains of HRQoL were affected. This applied to patients with both an aldosterone-producing adenoma and bilateral adrenal hyperplasia. Adrenalectomy improves HRQoL. Conflicting results have been reported on the extent of this improvement, the improvement after initiation of medical treatment, and whether there is a difference in HRQoL after both treatments. Similarly, psychopathological symptoms of anxiety, demoralization, stress, depression and nervousness were more frequently reported in untreated patients with primary aldosteronism than in the general population and patients with hypertension. Also an impaired sleep quality has been reported. Improvement of these symptoms was observed after treatment with both adrenalectomy and mineralocorticoid receptor antagonists. This review shows that HRQoL is impaired and psychopathology is more frequently reported in patients with primary aldosteronism. This seems to be at least partly reversible after treatment but the extent of improvement remains unknown. To assess HRQoL in these patients more precisely a primary aldosteronism-specific HRQoL questionnaire is required.


2017 ◽  
Vol 41 (S1) ◽  
pp. S352-S352 ◽  
Author(s):  
P. Asherson ◽  
C. Kosmas ◽  
C. Patel ◽  
H. Doll ◽  
A. Joseph

IntroductionEuropean data on health-related quality of life (HRQoL) in adults with attention deficit/hyperactivity disorder (ADHD) in the general population is sparse.Aims and objectivesTo report HRQoL in UK adults with ADHD.MethodsUK residents aged 18–55 years with a diagnosis of adult ADHD completed an online, cross-sectional survey including questions on disease history, the EuroQol Five Dimensions questionnaire with five-levels (EQ-5D-5L) and the Work productivity and activity impairment questionnaire: general health (WPAI:GH). ADHD symptom severity was assessed by telephone using ADHD rating scale version IV with adult prompts (ADHD-RS-IV).ResultsThe survey was completed by 233 participants (65.2% women; 77.3% white British), mean age 32.6 years (standard deviation [SD] 9.5), mean ADHD-RS-IV total score 43.46 (SD 7.88). Their mean EQ-5D-5L utility score of 0.74 (SD 0.21) was lower than the UK population norm of 0.86 (SD 0.23).[1] WPAI:GH scores indicated that health problems resulted in impairments of 32.04% in work productivity and 45.79% in regular daily activities. Regression analyses adjusting for gender, age and comorbidities demonstrated associations between EQ-5D-5L utility scores and gender (men had lower scores, P < 0.001), work impairment due to health problems (increasing impairment was associated with lower scores, P = 0.005) and age (for each additional year of age, scores decreased by 0.007, P = 0.010).ConclusionsThese results highlight the impact on health utility, work productivity and regular daily activities, and add to the description of the disease burden of adult ADHD in the UK.This study was funded by Shire Development LLC.Disclosure of interestKings College London research support account for Asherson received honoraria for consultancy to Shire, Eli-Lilly and Novartis educational/research awards from Shire, Lilly, Novartis, Vifor Pharma, GW Pharma and QbTech speaker at sponsored events for Shire, Lilly and Novartis.


2019 ◽  
Vol 53 (3) ◽  
pp. 337-347 ◽  
Author(s):  
Sanja Ledinski Ficko ◽  
Vlatko Pejsa ◽  
Vesna Zadnik

Abstract Background The impact of disease and treatment on the patient’s overall well-being and functioning is a topic of growing interest in clinical research and practice. The aim of this study is to obtain reference data on quality of life of Croatian general population. Further, we aim to assess the impact of the disease and its primary systemic treatment on their health related quality of life (HrQoL) in multiple myeloma (MM) patients. Patients and methods Participants for the first part of the study were randomly selected from adult Croatian population. In the clinical part of the study MM patients were included as prospectively diagnosed within two years in two major Croatian haematological centres. The EORTC QLQ-C30 in both trials and QLQ-MY20 in MM patients only were applied for HrQoL assessment. Results Gender, age and place of residence have great impact on quality of life scores in Croatian population. The MM patients at the time of diagnosis have lower QLQ-C30 scores for global quality of life, functional and symptom scale scores, as well as single items. The type of disease followed by the choice of therapy options are important HrQoL determinants. Conclusions The norm values available now for Croatian population will help to interpret HrQoL for clinicians and aid in planning cancer care interventions. This study identified treatment effect consistent with those from other observational studies and provided new data on HrQoL across two different treatment choices for MM patients.


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