Aims. To investigate the long‐term benefits of a six‐week comprehensive cardiac rehabilitation programme on physical activity, psychological well‐being and quality of life in patients with coronary ...heart disease.
Background. Cardiac rehabilitation (CR) in short term improves exercise capacity and quality of life in patients with cardiac disease. However, the long‐term benefits of CR are inconclusive.
Design. A prospective CR programme with repeated measures follow‐up over 12 months.
Methods. A six‐week outpatient cardiac rehabilitation programme was conducted including 147 patients with coronary heart disease. Patients completed the physical activity energy expenditure (seven‐day recall activity), MacNew Heart Disease Health‐Related Quality of Life (MacNew) and Hospital Anxiety and Depression scale (HADs) at baseline, six weeks, six and 12 months.
Results. One hundred and five (71%) patients (76 male) mean age of 61·8 (SD 9·7) completed the four‐measurement points. Analysis of variance revealed that total energy expenditure (F (2, 231) = 131, p < 0·001), HADs (F (2, 237) = 19·3, p < 0·001), depression score (F (2, 235) = 21·06, p < 0·001), anxiety score (F (2,237) = 17·02, p < 0·001) and MacNew (F (2, 197) = 77·02, p < 0·001) were all statistically significant over time. Bonferroni pairwise follow‐up confirmed significant positive differences (p < 0·05) between baseline values and all subsequent measures over time. Depression was independently explained in 22% of the variance in quality of life at 6 or 12 months. The energy expenditure was significantly higher for men compared to women (F (1, 103) = 31, p < 0·001).
Conclusion. A six‐week cardiac rehabilitation programme is beneficial in improving quality of life, physical activity status, anxiety and depression. These benefits were maintained at 12 months. Elevated levels of depression were associated with impaired quality of life.
Relevance to clinical practice. All relevant health care staff should be aware of the benefits of CR and routinely refer and encourage patients with cardiac disease to attend a cardiac rehabilitation programme. Depression and anxiety intervention strategies should be incorporated in cardiac rehabilitation programmes.
Psoriasis is a long-term immune-mediated inflammatory disorder mainly, but not only, affecting skin, and is associated with significant medical and psychological morbidity. Evidence suggests that ...sleep is disrupted in psoriasis, however high quality empirical evidence is lacking. Given the importance of sleep for health, characterisation of sleep disruption in psoriasis is an important goal. We therefore conducted a systematic review of the sleep-psoriasis literature.
Searches were conducted in Pubmed, SCOPUS and Web of Science from inception to May 2016. Studies were compared against inclusion/exclusion criteria and underwent a quality evaluation. Given the heterogeneity of studies, we conducted a narrative synthesis of the findings.
Searches revealed 32 studies which met our predetermined inclusion/exclusion criteria. Whilst 93.7% of studies reported sleep disruption in this population, ranging from 0.05% to 85.4%, many had important methodological shortcomings. Over half of all quantitative studies (54.8%; 17/31) relied on non-validated measures, contributing to heterogeneity in study findings. In those that employed valid measures, assessing sleep was often not the primary objective. We frequently found the absence of adequate sample size calculations and poor statistical reporting.
This review showed that in psoriasis, reported sleep rates of sleep disturbance varied substantially. Most studies lacked a hypothesis driven research question and/or failed to use validated measures of sleep. We were unable to draw firm conclusions about the precise prevalence and nature of sleep disturbance within the psoriasis population. We offer suggestions to help advance understanding of sleep disturbance in psoriasis.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
This open access book provides an overview of the International Map of Axial Spondyloarthritis (IMAS) project -focusing on Europe-, a wide-ranging, multi-disciplinary collaboration between academic ...groups, Health Care Professionals (HCPs), patient organizations and Novartis. IMAS was conceived to improve knowledge of Axial Spondyloarthritis (axSpA) and raise awareness of its heavy burden globally. By asking more than 2,000 patients across Europe about the impact of axSpA on multiple aspects of their life, the full extent of this disease was investigated from a direct patient perspective. This allowed a unique understanding of how living with axSpA affects the daily lives and well-being of patients, and how this varies between European countries. Axial Spondyloarthritis: Patient-Reported Impact in Europe highlights opportunities for progressing quality patient care to be applied to health services globally. HCPs, policy makers and patients will find this book to be an indispensable resource for improving the understanding of this chronic condition, including patients’ clinical outcomes, the protection of those at risk of psychological distress, and the economic burden on patients and society.
ObjectivesTo investigate the impact of SARS-CoV-2 on self-reported mood, coping and health behaviours of people living with existing health conditions in the UK to understand how to improve coping ...responses to the threat of SARS-CoV-2.DesignQuantitative design using a cross-sectional survey.SettingOnline survey in the UK.ParticipantsUK adults (18+ years) were eligible to participate. A total of 9110 people participated. Of these, 4377 (48%) reported at least one existing health condition, 874 (10%) reported having two or more existing conditions, and 715 (8%) reported having an existing mental health condition.Primary and secondary outcome measuresMultivariable linear regression and sequential multiple mediation analysis were used to estimate differences in average scores for active and avoidant coping response scores due to pre-existing health conditions, and to investigate the extent to which these differences are explained by differences in perceptions, beliefs, concerns and mood.ResultsPeople with pre-existing physical (+1.11 higher; 95% CI 0.88 to 1.34) and especially mental health conditions (3.06 higher; 95% CI 2.65 to 3.48) reported poorer health and used more avoidant coping compared with healthy participants. Under some strong untestable assumptions, we estimate that experiencing low mood or concern related to SARS-CoV-2 mostly explained the relationship between existing health conditions and avoidant coping.ConclusionPsychological support and interventions including behaviour change are required to mitigate the psychological burden of the SARS-CoV-2 pandemic and increase autonomy in people with and without pre-existing conditions during this highly uncertain time. Psychologists are well placed to support clinicians and people with existing health conditions to minimise the psychological impact of SARS-CoV-2, in order to alleviate the subsequent strain on healthcare services.
Illness perceptions are beliefs about the cause, nature and management of illness, which enable patients to make sense of their conditions. These perceptions can predict adjustment and quality of ...life in patients with single conditions. However, multimorbidity (i.e. patients with multiple long-term conditions) is increasingly prevalent and a key challenge for future health care delivery. The objective of this research was to develop a valid and reliable measure of illness perceptions for multimorbid patients.
Candidate items were derived from previous qualitative research with multimorbid patients. Questionnaires were posted to 1500 patients with two or more exemplar long-term conditions (depression, diabetes, osteoarthritis, coronary heart disease and chronic obstructive pulmonary disease). Data were analysed using factor analysis and Rasch analysis. Rasch analysis is a modern psychometric technique for deriving unidimensional and intervally-scaled questionnaires.
Questionnaires from 490 eligible patients (32.6% response) were returned. Exploratory factor analysis revealed five potential subscales 'Emotional representations', 'Treatment burden', 'Prioritising conditions', 'Causal links' and 'Activity limitations'. Rasch analysis led to further item reduction and the generation of a summary scale comprising of items from all scales. All scales were unidimensional and free from differential item functioning or local independence of items. All scales were reliable, but for each subscale there were a number of patients who scored at the floor of the scale.
The MULTIPleS measure consists of five individual subscales and a 22-item summary scale that measures the perceived impact of multimorbidity. All scales showed good fit to the Rasch model and preliminary evidence of reliability and validity. A number of patients scored at floor of each subscale, which may reflect variation in the perception of multimorbidity. The MULTIPleS measure will facilitate research into the impact of illness perceptions on adjustment, clinical outcomes, quality of life, and costs in patients with multimorbidity.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Aim
To examine Registered Nurses (RNs') and nursing students' perspectives on factors contributing to moral distress and the effects on their health, well‐being and professional and career ...intentions.
Design
Joanna Briggs Institute mixed‐methods systematic review and thematic synthesis. Registered in Prospero (Redacted).
Methods
Five databases were searched on 5 May 2021 for studies published in English since January 2010. Methodological quality assessment was conducted in parallel with data extraction.
Results
Searches yielded 2343 hits. Seventy‐seven articles were included. Most were correlational design and used convenience sampling. Studies were mainly from North America and Asia and situated in intensive and critical care settings. There were common, consistent sources of moral distress across continents, specialities and settings. Factors related to perceived inability or failure to enact moral agency and responsibility in moral events at individual, team and structural levels generated distress. Moral distress had a negative effect on RNs health and psychological well‐being.
Patient or Public Contribution
No patient or public contribution to this systematic review.
ObjectivesIn psoriatic arthritis (PsA), self-management is important for patient function and quality of life. Behaviour change can be difficult, patients could benefit from high-quality support to ...initiate change. Our aim was to codesign the project as theory-informed, evidence-based, patient-focused, materials supporting healthy lifestyle changes for patients diagnosed with PsA.MethodsDevelopment of the materials was overseen by a steering group of patients with PsA, psychologists, rheumatologists, a design team and researchers. First, a literature review was performed to establish the evidence base for behaviours and potential interventions in PsA, including diet, weight, alcohol, smoking, exercise, anxiety, depression and stress. An initial roundtable of patients with PsA prioritised areas and content ideas. Draft materials including a website and downloadable materials were produced. A second roundtable of patients with PsA collected feedback on the draft content and design. A third roundtable was held with patients with PsA and a fourth with clinicians to refine the materials and ensuring that they were evidence based, accessible, interesting, and helpful to initiate and maintain change. A final evaluation survey was performed to review the draft website before launching the final materials.Results15 candidate topics were prioritised. A website and set of postcards summarising the topics were developed by the design team and refined following feedback from the roundtable groups.ConclusionThis project created patient-focused resources to support behaviour change. It addresses common concerns of patients with PsA about how they may optimise their health by providing practical and brief interventions to challenge and support them to make changes.
BackgroundThe International Map of Axial Spondyloarthritis (IMAS) is a global initiative aimed to assess the impact and burden of axial spondyloarthritis (axSpA) and identify the unmet needs from the ...patient’s perspective.MethodIMAS is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville, Novartis Pharma AG and steered by a scientific committee. IMAS collected information through an online cross-sectional survey (2017–2022) from unselected patients with axSpA from Europe, Asia, North America, Latin America and Africa who completed a comprehensive questionnaire containing over 120 items.Results5557 patients with axSpA participated in IMAS. Mean age was 43.9 ±12.8 years, 55.4% were female, 46.2% had a university education and 51.0% were employed. The mean diagnostic delay was 7.4 ±9.0 years (median: 4.0), and the mean symptom duration was 17.1 ±13.3 years. 75.0% of patients had active disease (Bath Ankylosing Spondylitis Disease Activity Index ≥4), and 59.4% reported poor mental health (12-item General Health Questionnaire ≥3). In the year before the survey, patients had visited primary care physicians 4.6 times and the rheumatologist 3.6 times. 78.6% had taken non-steroidal anti-inflammatory drug ever, 48.8% biological disease-modifying antirheumatic drugs and 43.6% conventional synthetic disease-modifying antirheumatic drugs. Patients’s greatest fear was disease progression (55.9%), while the greatest hope was to be able to relieve pain (54.2%).ConclusionsIMAS shows the global profile of patients with axSpA, highlighting unmet needs, lengthy delays in diagnosis and high burden of disease in patients with axSpA worldwide. This global information will enable more detailed investigations to obtain evidence on the critical issues that matter to patients around the world to improve their care and quality of life.
Introduction
To assess differences in the diagnosis journey and access to care in a large sample of patients with axial spondyloarthritis (axSpA) from around the world, included in the International ...Map of Axial Spondyloarthritis (IMAS).
Methods
IMAS was a cross-sectional online survey (2017–2022) of 5557 unselected patients with axSpA from 27 countries. Across five worldwide geographic regions, the patient journey until diagnosis and healthcare utilization in the last 12 months prior to survey were evaluated. Univariable and multivariable linear regression was used to analyze factors associated with higher healthcare utilization.
Results
Of 5557 participants in IMAS, the diagnosis took an average of 7.4 years, requiring more than two visits to HCPs (77.7% general practitioner and 51.3% rheumatologist), and more than two diagnostic tests 67.5% performed human leukocyte antigen B27 (HLA-B27), 64.2% x-ray, and 59.1% magnetic resonance imaging (MRI) scans. North America and Europe were the regions with the highest number of healthcare professional (HCP) visits for diagnosis, while the lowest number of visits was in the Asian region. In the previous 12 months, 94.9% (
n
= 5272) used at least one healthcare resource, with an average of 29 uses per year. The regions with the highest healthcare utilization were Latin America, Europe, and North America. In the multiple linear regression, factors associated with higher number of healthcare utilization were younger age (b = – 0.311), female gender (b = 7.736), higher disease activity (b = 1.461), poorer mental health (b = 0.624), greater functional limitation (b = 0.300), greater spinal stiffness (b = 1.527), and longer diagnostic delay (b = 0.104).
Conclusion
The diagnosis of axSpA usually takes more than two visits to HCPs and at least 7 years. After diagnosis, axSpA is associated with frequent healthcare resource use. Younger age, female gender, higher disease activity, poorer mental health, greater functional limitation, greater spinal stiffness, and longer diagnostic delay are associated with higher healthcare utilization. Europe and North America use more HCP visits and diagnostic tests before and after diagnosis than the other regions.
The Development and Validation of a Neuropathy- and Foot Ulcer-Specific Quality of Life Instrument
Loretta Vileikyte , MD 1 ,
Mark Peyrot , PHD 2 3 ,
Christine Bundy , PHD 1 ,
Richard R. Rubin , PHD ...4 ,
Howard Leventhal , PHD 5 ,
Pablo Mora , PHD 5 ,
Jonathan E. Shaw , MD 1 ,
Paul Baker , MD 6 and
Andrew J.M. Boulton , MD 1
1 Departments of Medicine and Behavioral Science, Manchester Royal Infirmary, Manchester, U.K
2 Center for Social Research, Loyola College, Baltimore, Maryland
3 Department of Medicine, Johns Hopkins University, Baltimore, Maryland
4 Department of Pediatrics, Johns Hopkins University, Baltimore, Maryland
5 Department of Psychology, University of Rutgers, New Brunswick, New Jersey
6 The Diabetes Center, Bolton, U.K
Address correspondence and reprint requests to Dr. Loretta Vileikyte, Division of Endocrinology, University of Miami School
of Medicine, P.O. Box 016960 (D-110), Miami, FL 33101. E-mail: lvileikyte{at}med.miami.edu
Abstract
OBJECTIVE —The purpose of this study was to develop a questionnaire that measures patients’ perceptions of the impact of diabetic peripheral
neuropathy and foot ulcers on their quality of life and to assess the psychometric properties of this instrument in a sample
of patients with varying severity and symptomatology of diabetic peripheral neuropathy.
RESEARCH DESIGN AND METHODS —The neuropathy- and foot ulcer-specific quality of life instrument (NeuroQoL), generated from interviews with patients with
( n = 47) and without ( n = 15) diabetic peripheral neuropathy, was administered to 418 consecutive patients with diabetic peripheral neuropathy (35%
with foot ulcer history) attending either U.K. ( n = 290) or U.S. ( n = 128) diabetes centers. Psychometric tests of NeuroQoL included factor analyses and internal consistency of scales; a series
of multivariate analyses were performed to establish its criterion, construct, and incremental validity. Results were compared
with those obtained using the Short Form (SF)-12 measure of health-related functioning.
RESULTS —Factor analyses of NeuroQoL revealed three physical symptom measures and two psychosocial functioning measures with good
reliability (α = 0.86–0.95). NeuroQoL was more strongly associated with measures of neuropathic severity than SF-12, more
fully mediated the relationship of diabetic peripheral neuropathy with overall quality of life, and significantly increased
explained variance in overall quality of life over SF-12.
CONCLUSIONS —NeuroQoL reliably captures the key dimensions of the patients’ experience of diabetic peripheral neuropathy and is a valid
tool for studying the impact of neuropathy and foot ulceration on quality of life.
MCS, Mental Component Summary
NDS, Neuropathy Disability Score
NeuroQoL, neuropathy-specific quality of life instrument
PCS, Physical Component Summary
SF, Short Form
VPT, vibration perception threshold
Footnotes
A table elsewhere in this issue shows conventional and Système International (SI) units and conversion factors for many substances.
Accepted May 30, 2003.
Received March 7, 2003.
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