National Fibromyalgia and Chronic Pain Association
Acetaminophen - A type of pain reliever that does not contain aspirin and does not need a prescription.
Acupressure -The application of pressure (as with the thumbs or fingertips) to the same discrete points on the body stimulated in acupuncture; used for therapeutic effects (as the relief of tension or pain).
Acupuncture - The ancient Chinese practice of inserting fine needles through the skin at specific points especially to cure disease or relieve pain.
Adherence -(Same as Compliance) How well the patient adheres to an agreed treatment plan.
Adverse Events - Negative side effects of a treatment.
Allodynia - A condition in which you have a painful reaction to a stimulus, such as a light touch on your skin, when you shouldn’t.
Alternative Medicine - Any of various systems of healing or treating disease (as homeopathy, chiropractic, naturopathy, Ayurveda, or faith healing) that are not included in the traditional curricula taught in medical schools of the United States and Britain.
AMERICAN COLLEGE OF RHEUMATOLOGY (ACR)
American College of Rheumatology (ACR) - The official organization for health-care professionals who treat arthritis and other rheumatic diseases. This organization established the criteria for diagnosing fibromyalgia.
A drug that helps reduce or eliminate the perception of pain.
ANTI-TUMOR NECROSIS FACTOR
TNF is a chemical made by the body’s immune system. When it is made in the joints it causes the process of inflammation and joint damage, as in rheumatoid arthritis. It was first discovered many years ago in experiments on cancer, where it was found to cause cancer cells to die, and so it was called Tumor Necrosis (i.e. the death of a piece of bone or tissue) Factor.
A prescription medication that is prescribed to relieve moodiness and depression. Some antidepressants can also promote sleep and help relieve pain.
Joint pain. A diagnosis of arthritis means that you are experiencing joint inflammation that causes pain, swelling, stiffness, and redness in any joint in the body. Note: Unlike arthritis, fibromyalgia is not an inflammatory illness, nor does it cause degeneration of joint or connective tissues (for example cartilage).
A part of the vertebrate nervous system that innervates smooth and cardiac muscle and glandular tissues and governs involuntary actions (as secretion, blood vessel functions, intestinal and esophagus performance, etc.) and consists of the sympathetic nervous system and the parasympathetic nervous system.
This index measures the extent to which somebody functions independently (in their activities of daily living such as bathing, walking and dressing) and has mobility. It also indicates the need for care. The Barthel Index contains 15 items. Each item is assessed by four scores: function intact (1), function limited (2), assistance is needed (3), and function impossible (4). The Barthel ADL Index was first developed by Mahoney and Barthel in 1965 and later modified by Collin et al in 1988.
Bath Ankylosing Spondylitis Disease Activity Index: Measures AS-specific disease activity. Range 0-10; higher values indicating higher disease activity.
The initial assessment at the start of a study. The effect of an intervention (e.g. a new tablet) can be determined by comparing baseline scores to follow up scores.
BASIC SCIENTIFIC RESEARCH
This term is usually used to differentiate studies involving real live patients (e.g. a trial of a new type of physiotherapy, clinical research) from work based in a test tube in a laboratory (basic scientific research). In rheumatology we need both.
Something that distorts a process. This process could be a meeting where a person’s views may be biased, favoring only one way of looking at things, or the process of some research itself where results are distorted, for example by only including patients who can go to the hospital; some studies are biased and the results cannot be generalized to patients who are less mobile and cannot therefore get to the hospital as outpatients.
The technique of making unconscious or involuntary bodily processes (as heartbeat or brain waves) perceptible to the senses (as by the use of an oscilloscope) in order to manipulate them by conscious mental control.
Scientific research that relates and applies to clinical medicine.
The principle that if you don’t know what treatment you are on (maybe you get a placebo), you can’t influence the results. Single blind means that only the patient doesn’t know whether he or she gets the real drug or a placebo. Double blind means that neither the patient nor the clinician (doctor, nurse, or researcher) knows.
Complementary and alternative medicine.
Research based on one or a few patients. Case studies may be very detailed and are a good way of finding out about rare conditions or illnesses. Case studies are usually retrospective (looking back at events), not prospective (or looking forwards to events as they happen) and so are not very useful for coming to conclusions about the safety or efficacy of different treatments.
The part of the human nervous system which consists of the brain and spinal cord, to which sensory impulses are transmitted and from which motor impulses pass out, and which supervises and coordinates the activity of the entire nervous system.
A narrowing of the cervical (C-1 through C-7) spinal canal.
Describes a disease or condition that persists throughout a person’s life and must be managed because it cannot be cured. Chronic illness is characterized by alterations in normal functioning that cannot be reversed or stopped by current medical knowledge. However, most chronic illnesses can be effectively managed using medical treatment combined with patient education. Knowledge regarding the cause of an illness and changes in behavior (for example, coping skills) may reduce symptoms and can help produce a better quality of life.
The daily rhythm that you body adjusts to in order to carry out essential biological functions.
see also: Case Study, Cohort Study, Randomized Clinical Trial (RCT) cf. Basic Scientific Research. Usually applied to studies that have direct applicability to patients and their care, or are carried out in patients, rather than in a laboratory.
A principle, fact, or study that is directly applicable to patient care.
The science of clinical measurement.
Of, relating to, or being conscious of intellectual activity (as thinking, reasoning, remembering, imagining, or learning words).
COGNITIVE BEHAVIOR THERAPY (CBT)
Psychotherapy that is concerned with the treatment (as by desensitization or aversion therapy) of observable behaviors rather than underlying psychological processes. It applies principles to substitute desirable responses and behavior patterns for undesirable ones (as phobias or obsessions). Called also “behavior therapy.”
A research method concerned with observing events involving a particular group of people over time (such as a group of patients’ progress in long-term treatment) in order to provide information, which is useful for identifying longer-term strategies and treatments that are effective.
The existence of two chronic diseases in one person at the same time; for example, a patient with the joint disease rheumatoid arthritis and the skin disease psoriasis.
(Same as Adherence) How well the patient complies with an agreed treatment plan.
(therapies) Other treatments used at the same time as the treatment under investigation. They may be for the same condition or for unrelated conditions.
Joints, bones, cartilage, and other tissue that supports and holds together different parts of the body.
Early in the development of clinical research it became clear that it can be very difficult to disentangle the real effect of an intervention or treatment from the natural background variation in the way patients feel. In other words, patients may feel better or worse and it has nothing to do with the study treatment. To address this problem, study designers often observe patients or volunteers who have not been given the active treatment, and compare their progress with those that have. The former group is termed a control group, and such a study a controlled study. To minimise bias such studies are often randomized (there is an equal chance of any individual being allocated to either the active or the control group) and (double or single blind) placebo controlled.
COPING STRATEGIES (PASSIVE COPING)
The way that people react to radical events (life-strains of stressors). People who have a chronic disease have to deal with the pain and stresses of their disease, e.g. uncertainties about the future, problems at work and in daily life, etc. When people experience an event as stressful, they begin to make efforts to cope with that event. Coping is the process of attempting to manage demands that are seen as taxing or exceeding one’s resources. People can use various coping strategies. Two general types of coping strategies can be distinguished: strategies aimed at solving problems (problem-focused coping) and strategies aimed at controlling emotional reactions to a stressful event. Examples of problem-focused strategies people can use are problem-solving or information seeking. Emotion-focused strategies are, for instance, seeking emotional support, venting feelings, avoidance, and denial. Coping strategies are of great importance in relation to the extent of the negative influence the disease has on the patient. Research has shown that people who react in an active way to the consequences of their disease, are more effective than people who react in a passive way.
The Canadian Occupational Performance Measure (COPM) is an outcome measure designed for use by occupational therapists to assess client outcomes in the areas of self-care, productivity and leisure. It is a measure of a client's self-perception of occupational performance in these areas. The COPM is administered using a semi-structured interview in which the client identifies significant issues in daily activities which are causing difficulty. Two scores, for performance and satisfaction with performance, are obtained. (Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. The Canadian occupational performance measure: an outcome measure for occupational therapy.
A medication used for relief of inflammation and pain, sometimes called steroids.
A cross-sectional study is an observational study, in which the observations (e.g. responses to a questionnaire) are made on a single occasion. Cross-sectional studies generally focus on a single group of people representative of the population of interest. Cross-sectional studies can be a useful way of getting a lot of information quickly but are not considered as powerful as prospective (or longitudinal) studies, in which patients or a disease process are/is followed over time.
Cytokines are immune system cells (found in synovial fluid) that have been linked to the rheumatoid arthritis disease process of inflammation and cartilage destruction.
The Delphi Process is a means of reaching consensus through structured consultation between a group of people who may have very different perspectives and fields of expertise. It is particularly useful where there is little or no published information on the subject under consideration. Unlike more familiar consultation methods such as steering groups, the Delphi Process doesn’t need participants to physically meet together, and there is no limit on how many people can be involved. Since the process is anonymous, it avoids “power struggles” because there is no opportunity for a strong individual to unduly influence the group and people can change their minds without losing face. The process also enables a combination of many opinions into a group response and can be completed in as short a time as possible. To ensure anonymity, the Delphi Process uses questionnaires. These involve a number of statements to which participants respond using a ranking system. Reponses are analysed centrally and then fed back to all participants, enabling individuals to change their mind and re-rank their answers if they wish, in light of opinions expressed by the group. The process is repeated until consensus is reached. At the end, a statistical response is arrived at for each statement that equates to the strength of opinion felt by the group. The result can then be used as a benchmark for developing good practice.
Depression is a disorder of mood, characterized by sadness and loss of interest in usually satisfying activities, a negative view of the self, and hopelessness, passivity, indecisiveness, suicidal intentions, loss of appetite, weight loss, sleep disturbances, and other physical symptoms.
A condition that affects an organism and impairs its normal physiological functioning. Sometimes this term is only used for conditions where there is structural or functional change in the organs or tissues involved.
A disruption of regular or normal functions of health.
Broad area of measurement (e.g. physical function).
A monoamine, C8H11NO2, that is a decarboxylated form of dopa and occurs especially as a neurotransmitter in the brain and as an intermediate in the biosynthesis of epinephrine.
Carr’s Disease Repercussion Profile is an individualized measure that gives a profile of perceived impairment in 6 domains: functional activities, social activities, socio-economic status, relationships, emotional well-being, and body image. Patients specify the impairment they are experiencing in each of the domains and rate its severity on a 10-point graphic rating scale. The instrument is designed to help choose an intervention to suit patients rather than to assess outcomes of chosen interventions in groups of patients.
(Standardized Effect Size). A simple way to determine the degree of improvement (or otherwise) of a particular therapy after any placebo effect has been accounted for. The effect size is calculated as the ratio of the treatment effect (mean differences in treatment group minus differences in placebo group) to the pooled standard deviation of these differences.
The extent to which something actually works. In medicine this is a precise term and relates to the effect size (see below). Effectiveness of a specific treatment may be estimated from relevant research literature but many trials do not include patients with co-morbidity (there might be multiple exclusion criteria), and so the effect size may be less in a typical clinical setting.
The extent to which a treatment improves outcomes under ideal circumstances, for example the maximum effect in patients who didn’t experience side effects and took all prescribed drugs.
A statistical measure. The mean (average) change in the measure divided by the standard deviation (a statistical measure of spread) of the change.
A treatment derived from experiment and observation rather than theory. In practice this term applies to treatments based upon the individual’s clinician’s experience and judgement.
Making it possible for people who are disempowered to exercise power and have more control over their lives. That means having a greater voice in institutions, agencies, and situations that affect them.
A protein that accelerates chemical reactions.
The first European League Against Rheumatism congress took place in 1947. At that time there were 11 members. The congress was held every four years. Each year the Eular organized a symposium. Because of the increasing number of members (42 countries in 2000) Eular has organized a conference each year since 2000. There are scientific programs and programs for allied health professionals and for patient organisations.
The EUROQol is a short self-report questionnaire to measure generic health-related quality of life in 5 dimensions: mobility, self-care, usual activity, pain/discomfort, and anxiety/depression. Each dimension is measured with one item and scored between 0 to 1 (0 equals death and 1 perfect health). It also includes a 0-100 graphic rating scale to measure overall health status. The EuroQol (EQ-5D) was developed by the EuroQol Group in 1990.
Evidence-Based Medicine is the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgement that individual clinicians acquire through clinical experience and clinical practice. By best available external clinical evidence we mean clinically relevant research, often from the basic sciences of medicine, but especially from patient-centred clinical research into the accuracy and precision of diagnostic tests (including the clinical examination), the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence both invalidates previously accepted diagnostic tests and treatments and replaces them with new ones that are more powerful, more accurate, more efficacious, and safer.
There are 4 levels of evidence which are broadly recognized:
1. Meta-study 2. Controlled trials (RCT’s) 3. Observational study 4. Expert opinions
Pre-defined factors that exclude a subject from a trial. For example: clinical studies often exclude patients that would be unable to attend for review for any reason. Many studies exclude subjects of less than 18 years old.
Is a commonly reported symptom of fibromyalgia. Fibromyalgia patients often describe multiple sensations of fatigue and listlessness combined with transitory states of confusion, poor attention and concentration, and short-term memory loss. This fibro fog tends to exacerbate the deficits in daily functioning that a fibromyalgia sufferer must deal with.
FIBROMYALGIA DIAGNOSTIC CRITERIA
The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia History of widespread pain has been present for at least three months
Definition: Pain is considered widespread when all of the following are present:
1. Pain in both sides of the body 2. Pain above and below the waist. In addition, axial skeletal pain (cervical spine, anterior chest, thoracic spine or low back pain) must be present. Low back pain is considered lower segment pain.
Pain in 11 of 18 tender point sites on digital palpation
Definition: Pain, on digital palpation, must be present in at least 11 of the following 18 tender point sites:
1. Occiput (2) - at the suboccipital muscle insertions. 2. Low cervical (2) - at the anterior aspects of the intertransverse spaces at C5-C7. 3. Trapezius (2) - at the midpoint of the upper border. 4. Supraspinatus (2) - at origins, above the scapula spine near the medial border. 5. Second rib (2) - upper lateral to the second costochondral junction. 6. Lateral epicondyle (2) - 2 cm distal to the epicondyles. 7. Gluteal (2) - in upper outer quadrants of buttocks in anterior fold of muscle. 8. Greater trochanter (2) - posterior to the trochanteric prominence. 9. Knee (2) - at the medial fat pad proximal to the joint line.
Digital palpation should be performed with an approximate force of 4 kg. A tender point has to be painful at palpation, not just tender.
The Fibromyalgia Impact Questionnaire (FIQ) is an instrument designed to quantitate the overall impact of fibromyalgia over many dimensions (e.g. function, pain level, fatigue, sleep disturbance, psychological distress etc.). It is scored from 0 to 100 with 100 being the worst case. The average score for patients seen in tertiary care settings is about 50. The FIQ is widely used to assess change in fibromyalgia status and has been translated into several languages.
A period of time (with a start and a finish) when symptoms recur, becoming worse and then slowly starting to improve again. A flare does not mean that fibromyalgia symptoms are getting worse.
Magnetic resonance imaging used to demonstrate correlations between physical changes (as in blood flow) in the brain and mental functioning (as in performing cognitive tasks).
A research method of gathering information from people while they are discussing a subject in small groups.
The Fatigue Severity Scale.
GENERAL SELF-EFFICACY SCALE
The GSES is a general measure for self-efficacy. Whilst it is not disease-specific, it is used for rheumatoid arthritis.
The genetic susceptibility to inherit a specific characteristic of disease.
The General Health Questionnaire is a 12-item instrument and has been tested for reliability, validity, and sensitivity as a screening tool for mental disorder and as a measure of short-term psychological distress. Subjects score between 0 and 12, with high scores indicating high levels of distress.
A vertebrate polypeptide hormone that is secreted by the anterior lobe of the pituitary gland and regulates growth; used to treat children with growth hormone deficiencies and by athletes to increase muscle mass.
Hospital Anxiety Depression Scale. The Hospital Anxiety and Depression Scale was developed in 1983 by Zigmond and Snaith for people with physical health problems. It differs from many other measures of anxiety and depression in that it does not contain questions about physical symptoms. Many other measures include questions about symptoms such as aches and pains, loss of appetite, or inability to sleep, and treat these as indicators of depression or anxiety. Clearly this would not be appropriate for people with, say, arthritis, where their aches and pains and inability to sleep are more likely due to their physical illness rather than an indicator of depression.
Stanford Health Assessment Questionnaire - The HAQ was developed in 1980 by Fries et al. It is a measure of functional ability and is based on the belief that a patient desires to be alive, free of pain, functioning normally, experiencing minimal treatment toxicity, and financially solvent. The measurements are on a scale of 0 (best) to 3 (worst). It is a self-administered measure that evaluates four dimensions: disability, discomfort, drug side effects, and costs. The disability section of the HAQ contains 20 questions about difficulties experienced with eight categories of activities of daily living, and four questions about the assistance used to perform these activities. The Modified HAQ, which contains only eight of these questions, one from each category, is commonly used.
This is based on a series of studies on the productivity of workers at factory which manipulated various conditions (e.g. pay, light levels, heating, rest breaks);each change resulted on average over time in productivity rising, including eventually a return to the original conditions. This was true of each of the individual workers as well as the group mean. Clearly the variables the experimenters manipulated were not the only nor dominant causes of productivity. One interpretation was that the important effect here was the feeling of being studied. It is this that is now referred to by “the Hawthorne Effect.”
Relating to or concerned with wholes or with complete systems rather than with the analysis of, treatment of, or dissection into parts; holistic medicine attempts to treat both the mind and the body.
Chemical messengers that include insulin, estrogen, thyroid, steroids, progesterone, and testosterone, which are all products of living cells. They circulate in body fluids (as blood) or sap and produce a specific, often stimulatory effect on the activity of cells usually remote from its point of origin.
The Health Related Quality of life "QoL” can be thought of as the overall impact of the illness and its treatment on patients physical,psychological and social functioning.
An increase in the range of movement of which a bodily part and especially a joint is capable; the term “double jointed” is derived from this abnormality.
A proposed mechanism that might explain a known fact or observation. A hypothesis may be tested by a well-designed research protocol. Unlike a theory it is not supported by direct evidence; rather it is the question we are asking in our research study.
Incremental Cost Effectiveness Ratio - Where effectiveness is measured in Quality Adjusted Life Years (see: QALYs), the Incremental Cost Effectiveness Ratio compares the cost per Quality Adjusted Life Year of two competing interventions in terms of a ratio. Thus if intervention 1 costs $32,000 per Quality Adjusted Life Year and intervention 2 costs $16,000 per QALY, the Incremental Cost Effectiveness Ratio is 32 000/16 000 = 2. In order that fair, reasonable and justifiable decisions can be made when comparing treatments, the effects of treatments as well as the costs have to be considered. Often the way of doing this is to calculate an Incremental Cost Effectiveness Ratio. Usually a new treatment is compared with a current treatment and the ICER is calculated as the difference in the cost of the treatments (the new minus the current treatment) divided by the difference in effectiveness of the treatments (the new minus the current).
When effectiveness is measured in Quality Adjusted Life Years the Incremental Cost Effectiveness Ratio answer is in cost per QALY gained ($ per QALY). For example, if a new treatment costs $30,000 more than the current treatment but results in 3 extra Quality Adjusted Life Years then the ICER is $30,000/3 = $10 000 per QALY. By comparing ICER values (in $ per QALY) for many new treatments versus the current treatments (even treatments for a number of different diseases) the decision-makers can be helped in figuring out which competing new treatments are worth adopting. When two treatments are equal in effectiveness, the ICER cannot be calculated. Instead a cost minimization analysis is done, which merely means the cheaper of the two treatments is identified and the cost difference quantified.
One of the pro-inflammatory cytokines in the immune system thought to play a role in the disease process of rheumatoid arthritis, including bone erosion; the IL-1 receptor is the target of a new biological response modifier, Anakinra.
The bodily system that protects the body from foreign substances, cells, and tissues by producing the immune response; it includes especially the thymus, spleen, lymph nodes, special deposits of lymphoid tissue (as in the gastrointestinal tract and bone marrow), lymphocytes including the B cells and T cells, and antibodies.
The predefined characteristics that allow a subject to be entered for consideration for a trial. In a study of osteoarthritis, inclusion criteria might be determined as pain on most days of one month and definite radiographic evidence of osteoarthritis of the affected joint.
The body’s response to tissue injury or foreign substances that usually produce symptoms of heat, swelling, redness, and pain.
The decision by a person to give or not give permission for an action affecting them. The decision is based upon having all the information bearing on the situation including the advantages, disadvantages, and the various consequences involved.
A chronic idiopathic cystitis (inflammation of the urinary bladder) characterized by painful inflammation of the subepithelial connective tissue and often accompanied by Hunner’s ulcer.
Joint Protection Behaviour Assessment was constructed by Hammond and associates to determine the effect of protection methods during everyday activities on the patient’s behavior. It is not a questionnaire but an observational method (video-recorded and evaluated).
The Krupp Fatigue Severity Scale includes 9 items rated on 7-point scales and is sensitive to different aspects and gradations of fatigue severity. Most items in the Krupp scale are related to behavioral consequences of fatigue.
Low Disease Activity State
The Likert Scale is a type of attitudinal rating scale which asks people to show the extent to which they agree or disagree with statements. There are five to seven possible response choices. The most common scale is 1 to 5. Often the scale will be 1=strongly disagree, 2=disagree, 3=not sure, 4=agree, and 5=strongly agree. The result is obtained by calculating the average (i.e. mean) of all the results added together. Likert scales are often used in questionnaires to measure attitudes.
Measurements made repeatedly over a long period of time.