From BMC Urology, 1 August 2014 (0pen access journal, full paper available).
The MAPP research network: design, patient characterization and operations
J Richard Landis(1), David A Williams(2), M Scott Lucia(3), Daniel J Clauw(2), Bruce D Naliboff(4), Nancy A Robinson(1), Adrie van Bokhoven(3), Siobhan Sutcliffe(5), Anthony J Schaeffer(6), Larissa V Rodriguez(7), Emeran A Mayer(8), H Henry Lai(9), John N Krieger(10), Karl J Kreder(11), Niloofar Afari(12), Gerald L Andriole(9), Catherine S Bradley(13), James W Griffith(14), David J Klumpp(6), Barry A Hong(15), Susan K Lutgendorf(13), Dedra Buchwald(16), Claire C Yang(10), Sean Mackey(17), Michel A Pontari(18), Philip Hanno(19), John W Kusek(20), Chris Mullins(20), J Quentin Clemens(21*).
* Corresponding author Email: email@example.com
The MAPP Research Network Study Group
1) Department of Biostatistics and Epidemiology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA
2) Departments of Anesthesiology, Medicine and Psychiatry, University of Michigan, Ann Arbor, MI, USA
3) Department of Pathology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA
4) Departments of Medicine, Psychiatry, and Gastroenterology, University of California, Los Angeles, CA, USA
5) Division of Public Health Sciences, Department of Surgery, Washington University, St Louis, MO, USA
6) Department of Urology, Northwestern University, Chicago, IL, USA
7) Department of Urology, University of Southern California, Beverly Hills, CA, USA
8) Division of Digestive Diseases, University of California, Los Angeles, CA, USA
9) Division of Urologic Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA
10) Department of Urology, University of Washington, Seattle, WA, USA 11 Department of Urology, University of Iowa, Iowa City, IA, USA
12) VA Center of Excellence for Stress and Mental Health, University of California San Diego, San Diego, CA, USA
13) Departments of Obstetrics and Gynecology, Urology and Epidemiology, University of Iowa, Iowa City, IA, USA
14) Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA
15) Departments of Psychiatry and Medicine, Washington University School of Medicine, St. Louis, MO, USA
16) Departments of Epidemiology and Medicine, University of Washington, Seattle, WA, USA
17) Department of Anesthesiology, Division of Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, USA
18) Department of Urology, Temple University School of Medicine, Philadelphia, PA, USA
19) Department of Urology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA
20) National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA
21) Department of Urology, Division of Neurourology and Pelvic Reconstructive Surgery, University of Michigan, Ann Arbor, MI, USA
The “Multidisciplinary Approach to the Study of Chronic Pelvic Pain” (MAPP) Research Network was established by the NIDDK to better understand the pathophysiology of urologic chronic pelvic pain syndromes (UCPPS), to inform future clinical trials and improve clinical care. The evolution, organization, and scientific scope of the MAPP Research Network, and the unique approach of the network's central study and common data elements are described.
The primary scientific protocol for the Trans-MAPP Epidemiology / Phenotyping (EP) Study comprises a multi-site, longitudinal observational study, including bi-weekly internet-based symptom assessments, following a comprehensive in-clinic deep-phenotyping array of urological symptoms, non-urological symptoms and psychosocialfactors to evaluate men and women with UCPPS. Healthy controls, matched on sex and age, as well as “positive” controls meeting the non-urologic associated syndromes (NUAS) criteria for one or more of the target conditions of Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS) or Irritable Bowel Syndrome (IBS), were also evaluated.
Additional, complementary studies addressing diverse hypotheses are integrated into the Trans-MAPP EP Study to provide a systemic characterization of study participants, including biomarker discovery studies of infectious agents, quantitative sensory testing, and structural and resting state neuroimaging and functional neurobiology studies.
A highly novel effort to develop and assess clinically relevant animal models of UCPPS was also undertaken to allow improved translation between clinical and mechanistic studies. Recruitment into the central study occurred at six Discovery Sites in the United States, resulting in a total of 1,039 enrolled participants, exceeding the original targets. The biospecimen collection rate at baseline visits reached nearly 100%, and 279 participants underwent common neuroimaging through a standardized protocol. An extended follow-up study for 161 of the UCPPS participants is ongoing.
The MAPP Research Network represents a novel, comprehensive approach to the study of UCPPS, as well as other concomitant NUAS. Findings are expected to provide significant advances in understanding UCPPS pathophysiology that will ultimately inform future clinical trials and lead to improvements in patient care. Furthermore, the structure and methodologies developed by the MAPP Network provide the foundation
upon which future studies of other urologic or non-urologic disorders can be based.
Trial registration: ClinicalTrials.gov identifier: NCT01098279 “Chronic Pelvic Pain Study of Individuals with Diagnoses or Symptoms of Interstitial Cystitis and/or Chronic Prostatitis (MAPP-EP)”. http://clinicaltrials.gov/show/NCT01098279
Journal of Physiotherapy, 29 July 2014 (full text available, epublished ahead of print).
Several submaximal exercise tests are reliable, valid and acceptable in people with chronic pain, fibromyalgia or chronic fatigue: a systematic review.
Ratter J(1), Radlinger L(2), Lucas C(3).
1)Hospital Rivierenland Tiel, The Netherlands.
2)Applied Research and Development Physiotherapy, Health Division, Bern University of Applied Sciences, Switzerland.
3)Department of Clinical Epidemiology, Biostatistics and Bioinformatics, Medical Faculty, University of Amsterdam, Academic Medical Centre, Amsterdam, The Netherlands.
Are submaximal and maximal exercise tests reliable, valid and acceptable in people with chronic pain, fibromyalgia and fatigue disorders?
Systematic review of studies of the psychometric properties of exercise tests.
People older than 18 years with chronic pain, fibromyalgia and chronic fatigue disorders.
Studies of the measurement properties of tests of physical capacity in people with chronic pain, fibromyalgia or chronic fatigue disorders were included.
Studies were required to report: reliability coefficients (intraclass correlation coefficient, alpha reliability coefficient, limits of agreements and Bland-Altman plots); validity coefficients (intraclass correlation coefficient, Spearman's correlation, Kendal T coefficient, Pearson's correlation); or dropout rates.
Fourteen studies were eligible: none had low risk of bias, 10 had unclear risk of bias and four had high risk of bias. The included studies evaluated: Åstrand test; modified Åstrand test; Lean body
mass-based Åstrand test; submaximal bicycle ergometer test following another protocol other than Åstrand test; 2-km walk test; 5-minute, 6-minute and 10-minute walk tests; shuttle walk test; and modified symptom-limited Bruce treadmill test. None of the studies assessed maximal exercise tests.
Where they had been tested, reliability and validity were generally high. Dropout rates were generally acceptable. The 2-km walk test was not recommended in fibromyalgia.
Moderate evidence was found for reliability, validity and acceptability of submaximal exercise tests in patients with chronic pain, fibromyalgia or chronic fatigue. There is no evidence about maximal exercise tests in patients with chronic pain, fibromyalgia and chronic fatigue. [Ratter J, Radlinger L, Lucas C (2014)
Several submaximal exercise tests are reliable, valid and acceptable in people with chronic pain, fibromyalgia or chronic fatigue: a systematic review.Journal of Physiotherapy60:XXX-XXX.].
From Safety and Health at Work, 27 July 2014 (full paper available)
Evaluating interactive fatigue management workshops for occupational health professionals in the UK
Sheila Ali, MSc(a), Trudie Chalder, Professor(b), Ira Madan, Dr(c)
a) South London and Maudsley NHS Foundation Trust
b) Department of Psychological Medicine, King’s College London
c) Guys and St Thomas’ NHS Foundation Trust and Division of Health and Social Care, King’s College London, London, UK
Disabling fatigue is common in the working age population. It is essential that occupational health (OH) professionals are up-to-date with the management of fatigue in order to reduce the impact of fatigue on workplace productivity. Our aim was to evaluate the impact of one-day workshops on OH professionals' knowledge of fatigue and chronic fatigue syndrome (CFS), and their confidence in diagnosing and managing these in a working population.
Five interactive problem-based workshops were held in the United Kingdom. These workshops were developed and delivered by experts in the field. Questionnaires were self-administered immediately before (T1), immediately after (T2) and four months following each workshop (T3). Questionnaires included measures of satisfaction, knowledge of fatigue and CFS, and confidence in diagnosing and managing fatigue. Open-ended questions were used to elicit feedback about the workshops.
General knowledge of fatigue increased significantly after training (with a 25% increase in the median score). Participants showed significantly higher levels of confidence in diagnosing and managing CFS (with a 62.5% increase in the median score), and high scores were maintained at T3. OH physicians scored higher on knowledge and confidence than nurses. Similarly, thematic analysis revealed that participants had increased knowledge and confidence after attending the workshops.
Fatigue can lead to severe functional impairment with adverse workplace outcomes. One-day workshops can be effective in training OH professionals in how to diagnose and manage fatigue and CFS. Training may increase general knowledge of fatigue and confidence in fatigue management in an OH setting.