1 University of Cambridge School of Clinical Medicine, Cambridge, UK.

Slides:



Advertisements
Similar presentations
Back Injury First Aid Management Presentation by: Paul Beaumont SOVRIN Training.
Advertisements

Depression in adults with a chronic physical health problem
MOTOR NEURON DISEASE The motor neuron diseases (or motor neuron diseases) (MND) are a group of neurological disorders that selectively affect motor neurons.
Offender Health, What Role for the Probation Service? Coral Sirdifield 19 January 2011.
End of life research in COPD
UK clinical perspective on treatment reviews of multiple sclerosis therapies Alasdair Coles Neurologist, Cambridge, UK.
Development and initial validation of the ‘Bristol Impact of Hypermobility’ (BIoH) questionnaire ST Palmer a, F Cramp a, R Lewis b, G Gould c, E Clark.
Motor Neurone Disease Different types & Life Expectancy
What is it? -FM is the inflammation of white fibrous tissues (especially muscle sheaths). - FM is one of the main causes of Chronic Widespread Pain (CWP).
Exploring the Washington Group Data from the 2011 U.S. National Health Interview Survey Julie D. Weeks, Ph.D. National Center for Health Statistics, USA.
A qualitative study exploring the CBT experience of dementia patients and their carers Mary Opoku (2012)
PROactive Physical Activity as a Crucial Patient Reported Outcome in COPD
® Introduction Mental Health Predictors of Pain and Function in Patients with Chronic Low Back Pain Olivia D. Lara, K. Ashok Kumar MD FRCS Sandra Burge,
Coronel Institute Quality of Life and illness representation in chronic RSI patients: does work status matter? Dr. Judith K. Sluiter, PhD, Associate Prof.
Men, Women and Ageing Gender differences in the impact of gastrointestinal problems and their association with frailty Derrick Lopez 1, Leon Flicker 1.
Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences Outcome measures in psoriatic arthritis Preliminary identification.
A Prospective Study of the Impact of Bladder Incontinence Surgery on Sexual Satisfaction K. Witzke, DO, Gregory McIntosh, DO, FACOS, Jeffrey Schock, DO,
FDA Approach to Review of Outcome Measures for Drug Approval and Labeling: Content Validity Initiative on Methods, Measurement, and Pain Assessment in.
Fibromyalgia Patients Reading Self-Help Journals and in Internet Self-Help Groups: Are They Different from Patients in Clinical Practice? Robert Katz 1,
Functional assessment and training Ahmad Osailan.
Diagnosis of Spinal Cord Injuries. Traumatic Spinal Cord Injury Immediate loss of strength Immediate numbness in legs and arms Level of injury can predict.
Core Outcome Domains for Eczema – Results of a Delphi Consensus Project Introduction Eczema is a chronic, relapsing, inflammatory skin disorder that affects.
Disclosure of Financial Conflicts of Interest in Continuing Medical Education Michael D. Jibson, MD, PhD and Jennifer Seibert, MD University of Michigan.
Amyotrophic Lateral Sclerosis. Motor Neuron Disease Terminology Lower motor neuron Upper motor neuron Progressive Muscular Atrophy Amyotrophic Lateral.
SPINAL INJURIES. 2 Spine  7 Cervical  12 Thoracic  5 Lumbar  5 Sacral  4 Coccyx.
Psychological Distress and Recurrent Pain: Results from the 2002 NHIS Psychological Distress and Recurrent Pain: Results from the 2002 NHIS Loren Toussaint,
Skills Practicum. You – Are working in the Poly- Clinic.
ALS: Amyotrophic Lateral Sclerosis Lou Gehrig’s Disease.
Janet H. Van Cleave PhD, RN1 Brian Egleston PhD2
Consequences of cancer and its treatment. Improvements in early detection and diagnosis More advanced treatments From acute to long-term condition Increasing.
Comparison of Walking with Poles and Traditional Walking for Peripheral Arterial Disease(PAD) Rehabilitation 組別 : 第 5 組 組員 : 黃俊潔 CPT 湯季哲 CPT
By: Sakina Adams March 6, 2013 Psychology Spinal Cord Injury.
Motor Vehicle Accident and Injuries. Whiplash and back injuries are suffered by most victims involved motor vehicle accident.back injuries Over 200 million.
ACNE CORE OUTCOMES RESEARCH NETWORK Information for new patient members 01/2016.
PMP Outcomes. Background to Chronic Pain One of the most prevalent physical complaints - defined as prolonged pain of at least 3 months’ duration 10-20%
Sleep and Parkinson’s Disease
Motor Disabilities Angela Vujic CS 8803
TELEHEALTH: IDENTIFYING GEOGRAPHIES WITH GREATEST POTENTIAL IMPACT
Bersil Iglesias Anatomy & Physiology Castex P.3
Schizophrenia: an inside view
Long Term Effects of Cancer Treatment
Fibromyalgia Impact Questionnaire McGill Pain Questionnaire
Cognitive Changes in Myotonic Dystrophy
Current practice of continence advisors in the UK:
. Troponin limit of detection plus cardiac risk stratification scores for the exclusion of myocardial infarction and 30-day adverse cardiac events in ED.
The long-term impact of psychotherapy in patients with refractory angina Patel PA2, Ali N1, Thapar S1, Sainsbury PA1 1Department of Cardiology, Bradford.
Multiple sclerosis.
Unit 40 Dementia care.
Measurement Wu Gong, MS, MD
Balance and Falls for people with Multiple Sclerosis
DISCUSSION AND CONCLUSIONS
Kristin McDaniel Ross, M.S., Saint Louis University Contact: Abstract
Minoru Miyazato, Asuka Ashikari, Takuma Oshiro, and Seiichi Saito
The Impact of a Structured Balance Training Program on Elderly Adults
PHQ2 Screening Negative PHQ2 Screening Positive
@hrbtmrn Intro and welcome.
Pain Management a Consultant Perspective
Rhematoid Rthritis Respiratory disorders
Subsequent Healthcare Utilization Associated With Early Physical Therapy for New Episodes of Low Back Pain in Older Adults Deven Karvelas, MD University.
Background & Motivation
Volume 144, Issue 3, Pages e7 (March 2013)
The Research Question Aim TIA is defined by short-lasting symptoms
Diagnosis of Patient Six
Measuring perceptions of safety climate in primary care
Dan Perry, MD (Presented by Jennifer Laine, MD)
2018 Global Patient Survey on Lymphomas and CLL Bulgaria.
Sabrina M. Figueiredo1,3, Alicia Rozensveig3, José A. Morais2, Nancy E
Patient-reported Outcome Measures
#19234, & #19236.
Provider Counseling for Immunizations in Primary Care Settings
Presentation transcript:

1 University of Cambridge School of Clinical Medicine, Cambridge, UK. Common Data Elements in Degenerative Cervical Myelopathy (CODE-DCM): Identifying the Patient and Carer Perspective Colin Munro1, Fahana Akter2, Peter Hutchinson3, Benjamin Davies3, Mark Kotter2,3 1 University of Cambridge School of Clinical Medicine, Cambridge, UK. 2 Welcome Trust and Medical Research Council Stem Cell Institute, Anne Maclaren Laboratory, University of Cambridge, Cambridge, UK. 3 Department of Academic Neurosurgery, University of Cambridge, Cambridge, UK.

Degenerative Cervical Myelopathy (DCM) DCM is a common, progressive disease that: Is caused by degenerative changes in the cervical spine. Severely affects quality of life1. Estimated prevalence of 1% in the over 50s = most common cause of adult spinal cord impairment.

The issues with current DCM research A large proportion of biomedical research is wasted due to mismatch between what patients want and the research that is done3. This is because of a lack of input from patients in setting research outcomes. Variability of outcomes between research studies makes comparisons difficult.

Variability of outcome reporting in DCM studies A large proportion of biomedical research is wasted due to mismatch between what patients want and the research that is done3. This is because of little input from patients in setting research outcomes. Variability of outcomes between research studies makes comparisons difficult.

Common Data Elements in Degenerative Cervical Myelopathy To address variable outcome reporting the COMET Initiative aims to promote the development of Core Outcome Sets for all conditions. Core Outcome Sets are agreed and standardised sets of outcomes; the minimum that should be recorded in clinical studies. This allows studies to be compared, contrasted and combined easily. CODE-DCM is a project aiming to create a Core Outcome Set for Degenerative Cervical Myelopathy. CODE-DCM aims to involve patients in the selection of the core outcomes so that research output corresponds to patient needs.

CODE-DCM: The patient and carer perspective Investigate how DCM affects patients from both patient and carer perspectives. This will guide the outcomes that are chosen for research studies of DCM. Two stage approach: Identify the broad areas in which DCM affects patients Investigate which of these areas are most important to patients

Methods Structured interviews with patients (N=5) and carers (N=4) Reported effects listed and categorised Online DELPHI survey of Myelopathy.org Shortlist of effects and categories Stage 1 Stage 2 Stage 1: identified the areas in which DCM affects a few individuals Stage 2: validates the results of Stage 1 and investigates which areas are most important to patients Details of Stage 1: Using the Delphi process, DCM patients (N=5) and their carers (N=4) were interviewed about the impact of the condition on patients. Results from the systematic reviews1 and patient research priorities2 were disseminated, and further discussion recorded. The groups were merged, results shared and categorised by mutual agreement.

Results - Stage 1 - Reported Effects Reduced grip strength Symptom variability day by day Numbness Depression Difficulty planning life Neck clicking Heavy legs Urinary incontinence Insomnia Neck pain Reduced walking distance Difficulty breathing when lying flat Falls Erectile dysfunction Leg pain Neck stiffness Anxiety Difficult to climb stairs Unable to get out of bed Clumsiness Faecal incontinence Pins and needles Arm pain Muscle weakness Difficulties with social interaction 41 distinct effects were reported by patients and 11 by carers. These were then grouped into 9 categories.

Results - Stage 1 - Categories Patients: Carers: From Stage 1: Patients reported 41 effects of DCM whilst carers reported 11. These effects were categorised into 9 groups: arm/leg function, immobility, pain, psychosocial, sleep, genitourinary issues, sensation, symptom variability and breathing. The proportion of effects, reported by both patients and carers, relating to each category is shown below:

Results - Stage 2 - Round one of DELPHI Results from Stage 1 have been validated in a larger cohort using an online survey of the myelopathy.org community. All DCM effects were reported by at least 10% of patients. Demographics Most common DCM effects Least common DCM effects No. of patients: 244 Fatigue (82.1%) Unable to get out of chair (24.3%) Average age: 57 Reduced grip strength (80.1%) Difficulty breathing when lying flat (19.4%) Male/Female ratio: 1:3 Pins and needles (79.1%) Unable to get out of bed (17.5%) Average mJOA: 11.6 Numbness (78.6%) Faecal incontinence (10.2%) Neck stiffness (77.6%) Erectile dysfunction (10.2%)

Results - Stage 2 - Round one of DELPHI Some additional symptoms were reported by the survey: headaches, allodynia, electric shock sensations (Lhermitte’s sign) and female sexual problems. The results will be fed into round 2 of the DELPHI.

Results - Stage 2 - Patient Priorities We asked respondents to rank the categories of how DCM affects them in order of their impact. The mean rank for pain was the highest, followed by arm/leg function and sensation. 40% of respondents ranked pain first compared with only 15% ranking arm/leg function first. Category Ranking Scores: pain (6.84), arm/leg function (6.16), sensation (5.59), sleep (5.53), immobility (5.52), disease variability (4.79), psychosocial (4.65), genitourinary issues (4.25) and breathing (3.85). 1 having the least impact and 9 the most Scores are calculated by: 10 subtracted by the mean rank

Mismatch between research focus and patient priorities in DCM Whilst 40% of patients ranked pain as having the greatest impact on their lives only 27% of research includes it as an outcome2. Quality of life aspects are also infrequently recorded in studies (29%) despite their importance to patients. Some effects of DCM are not investigated at all: symptom variability, breathing and sleep. Current research is not representing how patients are affected.

Conclusions DCM affects patients in a variety of ways, with differing accounts from patients and carers. Patients consider pain as the most important feature of DCM. There is substantial mismatch between patients’ priorities and conducted research. Symptom variability, breathing and sleep are not currently measured in DCM treatment studies2. Subsequent steps in the CODE-DCM project will increase our understanding of what is important to patients. The results from this project will hopefully give DCM research more of a patient centered focus.

References Oh et al. Comparing Quality of Life in Cervical Spondylotic Myelopathy with Other Chronic Debilitating Diseases Using the SF-36 Survey. World Neurosurgery. 2017. Davies BM et al. Reported Outcome Measures in Degenerative Cervical Myelopathy: A Systematic Review. PloS One. 2016;11(8). Chalmers et al. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912).

If anyone would like to get involved, please visit: Questions? If anyone would like to get involved, please visit: www.myelopathy.org/codedcm