Glossary

A

Absorption: The uptake of substances into or across tissues.

Active ingredient: Any component that provides pharmacological activity or other direct effect in the diagnosis, cure, mitigation, treatment, or prevention of disease, or to affect the structure or any function of the body of man or animals.

Activity modification: Suggesting different ways to do an activity, for example, adopting a more supported seating posture.

Acupuncture: A method of obtaining pain relief that originated in China. Very fine needles are inserted, virtually painlessly, at a number of sites (called meridians) but not necessarily at the painful area. Pain relief is obtained by interfering with pain signals to the brain and by causing the release of natural painkillers (called endorphins).

Acute: Having a short and relatively severe course.

Acute phase reactants:  Acute-phase proteins are a class of proteins whose plasma concentrations increase (positive acute-phase proteins) or decrease (negative acute-phase proteins) in response to inflammation. This response is called the acute-phase reaction (also known as acute-phase response).

Adolescent: A young person in the process of developing from a child to an adult.  They are sometimes also referred to as a teenager or youth.

Adult medicine: Where patients are seen from 16 upwards.

Adult rheumatologist: A doctor who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones in adults.

Adverse event:  This is any undesirable experience associated with the use of a medical product (for example, drug treatment, and implant) in a patient.

Allergies: Abnormal reactions of the immune system that occur in response to otherwise harmless substances.

Alkaline phosphatase (ALP): This is an enzyme which is found in all of the body’s tissues.  Tissues such as the liver, bile ducts and bone have higher levels of ALP.  Tests may be conducted to measure the level of ALP as part of a routine liver function test.

American College of Rheumatology (ACR): The organisation for physicians, health professionals, and scientists in America advancing rheumatology through programs of education, research, advocacy and practice support.

Anaemia: A condition in which the red blood cell count is too low.

Anaemic:Relating to anaemia, the condition of having less than the normal number of red blood cells or less than the normal quantity of haemoglobin in the blood. The oxygen-carrying capacity of the blood is, therefore, decreased.

Anaesthetic: A substance that induces insensitivity to pain.

Anaesthetist: A medical specialist who administers anaesthetics.

Analgesia: Medication/ medicine that acts to relieve pain.

Ankylosing spondylitis: A type of arthritis involving inflammation in the spine that can cause the joints to fuse or grow together.  In children, the disease generally causes arthritis in the large joints of the lower extremities, such as the hips knees and ankles. Areas where the tendons attach to bones, such as the heel bone, can become very tender as well.

Antibodies:  This is a protective protein, which is produced by the body’s immune system when it detects harmful or foreign substances, and attacks these.

Antibiotic: These are medications used to treat, and in some cases prevent, bacterial infections

Anti- cyclic citrullinated protein (anti- CCP) antibody: A blood test which helps your doctor confirms a diagnosis of rheumatoid arthritis.

Anti double stranded DNA (ds- DNA) antibodies: (ds-DNA) Blood tests are used to detect these antibodies for the diagnosis of systemic lupus erythematosus (SLE)

Anti-Inflammatory: Medication/medicines  that relieve pain, fever and inflammation. These are often prescribed to treat arthritis inflammation and pain.

Anti neutrophil cytoplasmic antibodies (ANCA): Auto antibodies produced by a person's immune system that mistakenly target and attack proteins within the person's neutrophils (a type of white blood cell). 

Antinuclear antibody (ANA) test: A blood test to determine whether certain antibodies that indicate an autoimmune illness are present. In children with some types of juvenile arthritis, the test can provide some indication of the long-term risk of developing eye inflammation, called uveitis.

Anti- TNF drugs: A class of drugs used to treat inflammatory conditions such as rheumatoid arthritis, psoriatic arthritis, juvenile arthritis, Crohn's colitis, ankylosing spondylitis and psoriasis. These drugs are able to reduce inflammation and stop disease progression.

Arthralgia: Pain in a joint.

Arthritis: Literally means joint inflammation (arth = joint, itis = inflammation). It generally means inflammation of a joint from any cause, such as infection, trauma or an autoimmune disorder. Term encompasses more than 100 diseases and conditions.

Arthritis and Musculoskeletal Alliance (ARMA): A UK-wide umbrella body campaigning to improve musculoskeletal care, comprising over 30 patients, professional and research organisations, including NRAS.

Arthritis Care: A charity that has a dedicated helpline number for young people with arthritis as well as information on a range of topics, such as studying, exercising and healthy eating when you have JIA.  

Arthritis Research UK (ARUK): An organisation funding research into arthritis in the UK.

Arthroscopy: A procedure done while the patient is under general (or occasionally local) anaesthetic. A small tube is inserted into the joint, allowing the surgeon to actually look inside and take a small snip of synovium (this procedure is called a biopsy). Arthroscopy is sometimes needed to help diagnose the cause of the child’s arthritis.

Aspartate aminotransferase (AST):  This is an enzyme found in organs such as the liver, heart and kidneys and also in muscles.  Blood tests for AST are used to detect any liver damage.

Aseptic unit: Responsible for making up your child’s infusion under sterile conditions to ensure your child’s safety.

Association of the British Pharmaceutical Industry (ABPI): The main body representing research-based biopharmaceutical companies in the UK.

Atrophy: The wasting away or decrease in size of an organ or tissue in the body. 

Authorisation: The process that Clinical Commissioning Groups have to go through before they can be approved to operate in the new NHS.

Auto antibodies: These are proteins in the blood which are present with certain rheumatic conditions. Rheumatoid factor and anti-nuclear factor are auto antibodies.

Autoimmune disorder: A malfunction of the body’s immune system in which the body appears to attack and damage its own tissues. There are many types of autoimmune disorders or diseases, including arthritis and related conditions.

B

Bacteria: Single cell micro-organisms whose purpose is to replicate and are everywhere.

Bacterial infection: An infection caused by bacteria.

Band keratopathy: Deposits of calcium within the cornea.

Benefit: An advantage gained from something.

Biologics: These medication/medicines help control disease by changing the way the immune system works. They are developed using special technology from living cells, some that occur naturally and others that are created in a lab. They are most commonly used to treat rheumatoid arthritis and juvenile rheumatoid arthritis.

Biologics for Children with Rheumatic Diseases (BCRD): Includes information on the safety and efficacy of biologic therapies in children with rheumatic diseases.

Biologic therapy: These medication/medicines help control disease by changing the way the immune system works. They are developed using special technology from living cells, some that occur naturally and others that are created in a lab. They are most commonly used to treat rheumatoid arthritis and juvenile rheumatoid arthritis.

Blood chemistry:  This refers to the common blood tests measurements for electrolytes, glucose (blood sugar) and other chemicals for example. 

Blood test: A scientific examination of a sample of blood, typically for the diagnosis of illness or for the detection and measurement of drugs or other substances.

Bone development: The growth and development of bones from fetus to adult. It includes two principle mechanisms of bone growth: growth in length of long bones at the epiphyseal cartilages and growth in thickness by depositing new bone.

British Society of Rheumatology (BSR): The main body representing rheumatology professionals in the NHS. BSR promotes excellence in the treatment of people with arthritis and musculoskeletal conditions through providing education, training and standards of care.

British Society Paediatric and Adult Rheumatology (BSPAR):  A specialist society linked to the Royal College of Paediatrics and Child Health (RCPCH), with membership open to all health care professionals involved in the care of children and adolescents by paediatric rheumatology departments. 

Bruising: To injure the underlying soft tissue or bone of (part of the body) without breaking the skin, as by a blow.

BSPAR Etanercept Biologics Register: Collects detailed information on the effectiveness and safety of Etanercept in children with JIA.

C

Cannula: A soft hollow plastic tube which is inserted into the body for the delivery or removal of fluid (eg. blood, medications).

Calcification: A process in which calcium builds up in body tissue, causing the tissue to harden. This can be a normal or abnormal process.

Care and Support Alliance (CSA): An alliance of charities working together to influence the social care agenda and the forthcoming Social Care Bill in England.

Care Quality Commission (CQC): The independent regulator of health and adult social care in England, working to encourage improvement and remedy bad practice.

Cartilage: A smooth, glistening structure that lines the ends of bones, allowing them to glide smoothly.

Cataracts: Cloudy material forming inside the lens.

Cells: The basic structural and functional unit of any living thing.

Certolizumab: (also called certolizumab pegol or Cimzia) A treatment for rheumatoid arthritis and Crohn's disease.

Children and Adolescent Mental Health Service (CAMH):The website provides information for young people, parents and professionals about the range of mental health difficulties and disorders that may be encountered during childhood and adolescence.

Children’s Chronic Arthritis Association (CCAA): A UK charity which offers practical help and support and various educational and recreational opportunities for children with JIA. The charity also runs two family residential weekends per year for families living with JIA.

Children’s Health Assessment Questionnaire (CHAQ): The most widely used functional health status measure in children with juvenile idiopathic arthritis (JIA). It assesses functional ability in 8 domains of physical function (30 items) for children between the ages of 6 months up to 18 years.

Chlamydia: The most common sexually transmitted infection (STI) in the UK. It is a bacterium that can remain dormant for years and is a major cause of infertility. It may have no symptoms. This infection can act as a trigger for reactive arthritis.

Chronic: Long-lasting or persistent.

Clinical Assessment and Treatment Service (CATS): Clinics where someone would be referred to by their GP to have a problem assessed, then either be treated or referred elsewhere in the community for treatment, such as by a physiotherapist or further referral to a consultant. A sort of half-way house.

Clinical Commissioning Group (CCG): CCGs commission the majority of health services, including emergency care, elective hospital care, maternity services, and community and mental health services. The new groups will include GPs, nurses, clinicians and patient representatives.

Clinical drug studies:  Biomedical or behavioural research studies on human subjects that are designed to answer specific questions about biomedical or behavioural interventions, generating safety and efficacy data.  Also known as clinical trials.

Clinical nurse specialist:  An registered nurse who has specialist experience in looking after people with specific conditions, such as a rheumatology clinical nurse specialist who works with people with all kinds of arthritis related conditions.  These nurses are able to diagnose, recommend treatments and prescribe medications.

Clinical Senate: Provides clinical advice on commissioning plans to Clinical Commissioning Groups (CCGs).

Clinician: General term for a doctor, nurse or other member of your child’s health-care team that sees patients in a clinic or hospital.

Clot: This is often referred to as a blood clot and is a clump, mass or lump of hardened blood that forms inside a vein or artery.

Coil (used in MRI): This is a part of the hardware used during an MRI scan to help with the production of the image.  There are different types of coil (eg. head, shoulders, knees, spine, neck etc.) and any one of these may be placed on the patient before they go into the scanner.

Commissioning for Quality and Innovation (CQUIN): The CQUIN payment framework enables commissioners to reward excellence, by linking a proportion of English healthcare providers' (hospitals) income to the achievement of quality improvement goals.

Commissioning for Quality in Rheumatoid Arthritis (CQRA): A collaboration between NRAS, industry and the Department of Health, aiming to improve the quality of rheumatoid arthritis (RA) services by developing new commissioning metrics. The metrics can be used by commissioners as indicators to ensure they are commissioning a high quality RA service.

Commissioning Outcomes Framework (COF): A new document developed by the NHS Commissioning Board and used to hold commissioners to account for the quality of services they provide. The document will expand in more detail on outcomes and indicators in the NHS Outcomes Framework.

Commissioning Support Services (CSS): Organisations that will support CCGs to lead change and service redesign, identify gaps in services, spot and manage risks, identify service providers, manage tendering, and negotiate contracts.

Commissioning Support Unit (CSU): Commissioning support units support clinical commissioning groups by providing business intelligence, health and clinical procurement services, as well as back-office administrative functions, including contract management.

Community pharmacy: A healthcare facility that emphasizes providing pharmaceutical services to a specific community. It dispenses medication/ medicine and typically involves a registered pharmacist.

Computer Tomography (CT): A CT (scan) takes lots of pictures to produce a detailed 3-dimensional image of the inside of the body.  CT is very good for looking at blood vessels and soft tissue as well as bones.  It is also sometimes referred to as CAT which standards for computer axial tomography

Computer axial tomography (CAT): Also referred to as CT scan (see above).

Contrast Agent: This is a special liquid which makes certain structures and areas in the body appear much clearer on an image such as, X-ray, CAT/CT scan and MRI and helps to show up areas of inflammation for example.

Cornea:The transparent layer forming the front of the eye.

Corticosteroids: A group of powerful medication/medicines related to the natural hormones cortisone and hydrocortisone. These potent drugs quickly reduce pain and inflammation bur carry a risk of serious side effects when used in high doses. Sometimes referred to as steroids glucocorticoids, they are not the same as anabolic steroid drugs that some athletes abuse.

Co-trimoxazole: This is a combination antibiotic commonly used to treat bacterial infections.

C-Reactive Protein (CRP): A blood test that is a measure of the total inflammation in the body.

Creative trial designs: The ability to review data at certain pre-identified times during the study conduct, in order to make adjustments of sample size; reduce or increase numbers of subjects per treatment; modify dose levels; or drop or add treatments.

Cumulative effect: The state at which repeated administration of a drug may produce effects that are more pronounced than those produced by the first dose. Also known as cumulative action.

Cushingoid: Resembling the signs and symptoms of Cushing's disease or Cushing's syndrome.

Cushing’s syndrome: A possible side effect of taking corticosteroid medication/medicine; symptoms include weight gain, moonfaced, thin skin, muscle weakness and brittle bones.

Cytokines:  Proteins released by cells in the body and affect the behaviour of other cells.

D

Dactylitis: Inflammation of a digit (either finger or toe).The affected fingers and/or toes swell up into a sausage shape and can become painful.

Database: A collection of information that is organized so that it can easily be accessed, managed, and updated. 

Dermatomyositis: A disorder with inflammation of the muscles and skin that results in muscle weakness.

Dexamethasone: A synthetic drug of the corticosteroid type, used especially as an anti-inflammatory agent.

Diagnosis: The identification of the nature of an illness or other problem by examination of the symptoms.

Dietitian: A specialist in nutrition

Dilate: Enlarge.

Disability Benefits Consortium (DBC): An alliance of charities working to influence the welfare reform agenda.

Disability Living Allowance (DLA): A state benefit which is not means-tested that helps with the extra costs of long-term illness or disability, either physical and/or mental.

Disability Rights UK (formerly the Disability Alliance): The largest national pan-disability organisation led by disabled people. A coalition of different disability charities, including NRAS.

Disease: An impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.

Disease Activity Score (DAS): An assessment used to measure the level of disease activity in people with rheumatoid arthritis (RA).

Disease-modifying antirheumatic drugs (DMARDs): Medication/medicines used to slow or perhaps halt the progression of disease. DMARDs are used primarily to treat rheumatoid arthritis and juvenile idiopathic arthritis, but may also be prescribed for other inflammatory diseases such as lupus, ankylosing spondylitis and Sjogren’s syndrome.

Dislocation: An injury to a joint, a place where two or more of your bones come together, in which the ends of your bones are forced from their normal positions. This painful injury temporarily deforms and immobilizes your joint.

Distal: Farthest from a particular point of reference.

DNA: Short for deoxyribonucleic acid, DNA is the building block of life. DNA holds the genetic plans for how your body grows, changes and ages. By examining it, scientists are also learning ways in which they can use DNA to predict the likelihood of you developing a disease and better ways to treat disease.

Dose: A quantity of a medication/ medicine or drug taken or recommended to be taken at a particular time.

‘Dummy’ drug/treatment: A substance containing no medication and prescribed or given to reinforce a patient’s expectation to get well. 

E

Early Rheumatoid Arthritis Network (ERAN): A network of British rheumatology departments who collect and monitor clinical details on all early rheumatoid arthritis (RA) patients in a standard way in order to assess outcome in the long term on a national basis. 

Echocardiogram: A typeof scan that uses ultrasound waves to create detailed pictures of the inside of the heart. This test helps show the structure and movement of the heart.

Effectiveness: The degree to which something is successful in producing a desired result; success.

Effusion: The escape of a fluid from anatomical vessels by rupture or exudation

Electronic Transmission of Prescriptions (ETP): Enables (general practitioners) GPs/prescribers to send prescriptions electronically to pharmacies.

Electrolyte:  This is a medical term for a salt or ion in the blood or other bodily fluid that carries a charge.  Electrolytes affect the amount of water in your body, the acidity of your blood (pH), your muscle function, and other important processes.

Employment and Support Allowance (ESA): A means tested benefit that provides financial help to people who are unable to work because of illness or disability. It also provides personalised support to those who are able to work.

Energy conservation: Looking at the daily routines to find ways to reduce the amount of effort needed to perform certain tasks, eliminating other tasks, and building more rest throughout the day.

Enthesitis Related Arthritis (ERA) - Inflammation in the places where the tendons attach to the bone and causes pain in the bottoms of feet, around the hips, knees or in the back.

Entonox: Inhaled pain relief also known as ‘’laughing gas.’’

Enzyme:  This protein is a biological catalyst which increases the metabolic change of one substance to another for example, from the digestion of food to the synthesis of DNA.

Erosion:The superficial destruction of a surface area of tissue (as mucous membrane) by inflammation, ulceration, or trauma.

Erosive arthritis (EOA):  This is a form of osteoarthritis where there is an additional erosive/ inflammatory component.

Erythema: Inflammatory redness of the skin.

Erythrocyte sedimentation rate (ESR): A blood test that measures how quickly red blood cells cling together, fall and settle toward the bottom of a glass tube. When inflammation responds to medication/ medicine, the ESR usually goes down.

Etanercept: Licensed for the treatment of moderate to severe active rheumatoid arthritis, active and progressive psoriatic arthritis and severe ankylosing spondylitis.

European League against Rheumatism (EULAR): A European forum that promotes stimulates and supports the research, prevention, treatment and rehabilitation of rheumatic diseases.

Expert Patient Programme (EPP) rebranded as ‘self-management UK’ in 2014: Provides and delivers free courses aimed at helping people who are living with a long-term health condition to manage their condition better on a daily basis.

Extended oligoarthritis: This is a type of Juvenile Idiopathatic Arthritis (JIA).  When more than four joints are affected over time (after the initial six months) the arthritis is referred to as extended oligoarthritis.

F

Fat atrophy: The loss of fatty tissue in a localized area of the body. Also known as lipoatrophy or lipodystrophy.

Ferritin: The major protein concerned with iron storage.

Fibromyalgia: A noninflammatory rheumatic condition affecting the body’s soft tissues. Characterized by muscle pain, fatigue and non-restorative sleep, fibromyalgia has no associated abnormal X-ray or laboratory findings. It is often associated with headaches and irritable bowel syndrome.

Flare: The term used to describe a period during which disease symptoms reappear or become worse.

Full blood count (FBC): This test checks the red blood cells, white blood cells and platelets. Anaemia, or a low red blood cell count, can occur with iron deficiency or with chronic inflammation and can contribute to fatigue.

G

Gait: This refers to the pattern of movement of the limbs when a person is walking.

Gadolinium agent: This is a contrast agent used during MRI and which makes certain tissues, abnormalities or disease processes in the body stand out more clearly.

Gastroenterologist: A physician who specializes in the diagnosis, treatment and prevention of diseases of the digestive tract.

General anaesthetic:  Medication/ medicines used to cause a loss of consciousness so you're unaware of surgery.

General paediatrician: Care for children in hospital. Routine work includes seeing children in outpatients departments, emergency work on the wards or tending to sick babies in special care baby units. Other tasks are teaching and training, administration (such as writing letters and reports), talking to families and working closely with other health professionals.

General practitioner (GP): A medical doctor who treats acute and chronic illnesses and provides preventive care and health education to patients.

General Practitioner with Special Interest (GPwSI):  A GP with a Special Interest supplements their role as a generalist by providing an additional service while still working in the community.

Genetics: The study of inherited traits and how genes found in our DNA affect how we grow, develop and age. Discoveries made in the field of genetics have lead to some of the biggest advancements in treating arthritis.

Glaucoma: Increased pressure within the eye.

Goal setting:The process for thinking about your ideal future, and for motivating yourself to turn your vision of this future into reality. 

Gold standard: A thing of superior quality which serves as a point of reference against which other things of its type may be compared.

Golimumab: Licensed for the treatment of moderate to severe active rheumatoid arthritis, active and progressive psoriatic arthritis and severe active ankylosing spondylitis.

Gout:  A form of acute arthritis that causes severe pain and swelling in the joints.

Growing Pains: A disorder in which young children awake during the night complaining of severe calf, shin and thigh pains. There is no relation to growth. Arthritis does not occur together with growing pains.

Growth plates: The softest and weakest sections of the skeleton, sometimes even weaker than surrounding ligaments and tendons.

H

Haemoglobin: A protein found in red blood cells which contains the pigment that gives blood its colour. Because it can combine with, and then release, oxygen, it allows the blood to carry oxygen around the body. When it is low, this is known as anaemia.

Health and Social Care Act: The Act takes forward areas outlined in the NHS White Paper (Equity and Excellence: Liberating the NHS, 2010) and the subsequent Government response (Liberating the NHS: legislative framework and next steps).

Health and Social Care Alliance Scotland (The Alliance) was LTCAS - Long Term Conditions Alliance Scotland: A coalition of charities working to influence health policy in Scotland.

Health and Wellbeing Boards: Bring together the NHS, public health, adult social care and children’s services, including elected representatives and Local Healthwatch, to plan how best to meet the needs of their local population and tackle local inequalities in health.

Healthcare team: The health and social care workers involved with the care of a patient, including staff, if any, from the independent, voluntary and private sectors

HealthUnlocked (HU): The social network for health, which has over 500 communities to explore.

Healthwatch England: Healthwatch is a new independent consumer champion and a part of the Care Quality Commission that will champion the views of patients and carers. Local Healthwatch will be funded by and accountable to local authorities, and will be involved in local authorities’ new partnership functions.

Hip: A projection of the pelvis and upper thigh bone on each side of the body.

HIV:  Human immunodeficiency virus, the virus which can cause AIDS.

HLA-B27 typing: A blood test to determine if the HLA-B27 gene is present. This gene is a genetic marker associated with an increased risk of developing arthritis that involves the spine, such as ankylosing spondylitis. Most children with this gene are healthy, but they are more likely than others to develop this arthritis. Your child can test negative and still have this arthritis diagnosed.

Homecare: The delivery of a range of personal care and support services to individuals in their own homes. Also known as domiciliary care.

Humira (adalimumab): A TNF inhibitor approved for the treatment of rheumatoid arthritis, chronic plaque psoriasis, Crohn's disease, ankylosing spondylitis, psoriatic arthritis, and polyarticular juvenile idiopathic arthritis.

Hydrotherapist: A specialist in hydrotherapy.

Hydrotherapy:  Exercises that take place in water (usually a warm, shallow swimming pool or a special hydrotherapy bath) which can improve mobility, help relieve discomfort and promote recovery from injury.

Hydroxychloroquine: A drug that is administered orally to treat malaria, rheumatoid arthritis, and lupus erythematosus.

Hypotony: Reduced pressure within the eye.

I

Ibuprofen: A painkiller, which is available over-the-counter, without a prescription.

Idiopathic: Any disease that is of uncertain or unknown origin.

Implants: An artificial object in a person’s body which has been implanted during a medical/surgical procedure (eg. breast implants, pacemakers, a piece of tissue etc.).

Immune response: Activation of the body’s immune system to defend itself against foreign substances, or antigens.

Immune system: Your body’s complex biochemical system for defending itself against bacteria, viruses, wounds and other injuries. Among the many components of the system are a variety of cells (such as T cells), organs (such as the lymph glands) and chemicals (such as histamine and prostaglandins).

Immunisation: The process of both getting the vaccine and becoming immune to the disease as a result of the vaccine.

Immunosuppression: Suppression of the immune system and its ability to fight infection. 

Incidence:  This refers to theoccurrence, rate, or frequency of a disease.

Infection: The invasion and multiplication of microorganisms such as bacteria, viruses, and parasites that is not normally present within the body. 

Inflammation: A reaction to injury or infection resulting in redness, pain, swelling and stiffness in the affected areas.

Inflammatory arthritis: Usually referred to as rheumatoid arthritis (see below).  This is a common inflammatory disease which affects the joints in adults, particularly the lining of the joint.  It most commonly starts in the smaller joints in a symmetrical pattern – that is, for example, in both hands or both wrists at once.

Inflammatory cells: Increased activity of the gene transcription factor know as Nuclear Factor-kappaB (NF-κB). This is the gene transcription factor found in every cell, and it activates the inflammatory response of the innate immune system. 

Infliximab:An anti-TNF compound consisting of an antibody directed against TNF; it is used in treatment of regional enteritis and rheumatoid arthritis.

Information Strategy: UK Government’s main strategy document which sets out the vision for sharing information, and can then be used to drive changes in clinical outcomes for patients.

Infusion: The introducing of a solution (as of glucose or salt) especially into a vein.

Injection: Fluid injected into the body, especially for medicinal purposes.

Iodine based agent: This is a contrast agentused during MRI and which makes certain tissues, abnormalities or disease processes in the body stand out more clearly.

Iritis: Inflammation of the iris of the eye.

Insoles: A removable sole worn in the shoe to keep the foot in a position of improved function. 

Interlukin (IL): A chemical messenger involved in the inflammation process.

Intra-articular corticosteroids or steroids (IAS): Medication/medicine injected directly into the joint so the steroid can work directly within the inflamed joint. 

Intraocular pressure (IOP): The fluid pressure inside the eye. 

Intravenous: Existing or taking place within, or administered into, a vein or veins.

J

Joint: The site where two or more bones meet, binding the bones firmly together and permitting movement between them. A joint may be a hinge (elbow or knee) or a ball-and-socket (shoulder or hip).The ends of the bones are covered with cartilage, so they can glide over each other easily. Most joints are surrounded by a thin lining (synovium). In arthritis, this lining becomes inflamed.

Joint injection (intra-articular injection): A procedure used in the treatment of inflammatory joint conditions, such as rheumatoid arthritis, psoriatic arthritis, gout, tendinitis, bursitis, carpal tunnel Syndrome, and occasionally osteoarthritis.

Joint replacement surgery: Surgery in which diseased joints are replaced with man-made joints. This procedure is used mainly in older children and adults whose growth is complete and whose joints are badly damaged by arthritis.

Juvenile: Often used before another term to indicate it affects children. For example, juvenile lupus, juvenile diabetes.

Juvenile arthritis (JA): A general term used to describe the more than 100 rheumatic diseases and conditions that can affect children. Think of it as the term to describe arthritis in children. JA can cover many diseases including lupus, fibromyalgia and psoriatic arthritis. Not to be confused with JIA (see below).

Juvenile dermatomyositis: An inflammatory disease that causes a skin rash and muscle weakness. Approximately 20 percent of children with juvenile dermatomyositis (JDMS) have arthritis. JDMS is more common in girls and occurs most often in children between the ages of 5 and 14.

Juvenile idiopathic arthritis (JIA): The preferred term used by researchers, and doctors, to describe chronic, inflammatory autoimmune disease in which the body’s protective immune system attacks its own tissues, particularly the joints, causing pain, swelling and deformity. JIA is the most common type of arthritis that affects children, and there are many forms of the condition including:

-   Oligoarticular: Formerly known as pauciarticular, at diagnosis it affects four or fewer joints, usually the large joints such as knees, ankles or elbows. Approximately 50 percent of children with JIA have this form. Also known as oligoarthritis.

-   Extended oligoarthritis:  This form of JIA starts as oligoarthritis in the first 6 months, and then causes problems with many joints (5 or more) after that.

-   Polyarthritis: Affects five or more joints, at diagnosis, usually affecting the same joint on both sides of the body. Affects girls more often than boys. Approximately 30 percent of children with JIA have this form.

-   Systemic onset: Affects both the joints and internal organs, and can begin with a very high fever, rash, swollen joints and pain.

-   Enthesitis-related arthritis (ERA): A form of JIA in which arthritis is associated with inflammation of entheses (where tendons insert or attach to bones).The medical term is enthesitis. It usually affects boys over the age of 10 and can affect the back.

-   Psoriatic arthritis: A type of arthritis that may occur with the skin condition psoriasis. Skin symptoms in children include nail pitting or ridging, and atypical rash behind the ears, on the eyelids, elbows, knees and at the scalp line or the umbilicus. Arthritis may involve both large and small joints, usually asymmetrically: The spine may also be involved.

-   Undifferentiated arthritis: An inflammatory oligoarthritis or polyarthritis in which no definitive diagnosis can be made.

Juvenile rheumatoid arthritis (JRA): This is the term generally used in the United States for JIA (see above).

K

Keratic precipitates (KPs):Cell deposits on the lining of the cornea as a result of inflammation of the iris or ciliary body.

Kilogram (kg):  A unit of mass equal to 1000 grams.

L

Lead coat (apron):  this is a protect coat to protect against radiation during X-ray.

Leflunomide: An immunosuppressive disease-modifying antirheumatic drug (DMARD), used in active moderate to severe rheumatoid arthritis and psoriatic arthritis. It is a pyrimidine synthesis inhibitor.

Leg-length discrepancy: A difference in the length of the two legs that may be caused when arthritis affects one knee more than the other, causing the more affected leg to grow faster.

Lift: A raise put in or on the shoe worn on the shorter leg, so the legs are of equal length when walking.

Ligament: A short band of tough, flexible fibrous connective tissue which connects two bones or cartilages or holds together a joint.

Long-term conditions outcome strategy: A new strategy that the UK Government is developing to set out its vision for how people with long-term conditions should be treated and cared for and supported to live full lives in England.

Lyme disease: An inflammatory disorder characterized by a skin rash, followed in weeks or months by symptoms in the central nervous system, cardiovascular system and joints. It is caused by the bite of an infected deer tick. The disease is named after the Connecticut town where it was first discovered. It is now found across the United States.

M

Macrophage activation syndrome (MAS): A life-threatening complication of rheumatic disease that, for unknown reasons, occurs much more frequently in individuals with systemic juvenile idiopathic arthritis (SJIA) and in those with adult-onset Still’s disease.

Macular oedema: Swelling at the back of the eye.

Magnetic resonance imaging (MRI): A type of X-ray (but without radiation) that examines joints and surrounding structures using magnetic fields. Excellent pictures of the inside of the joint are obtained.

Malar rash: A rash appearing on the cheeks. It is sometimes a symptom of systemic lupus erythematosus or lupus. Also known as a “butterfly rash” because of its shape.

Medication or medicine: A drug or other form of medicine that is used to treat or prevent disease.

Medicines and Healthcare Products Regulatory Agency (MHRA):  This agency is responsible for the regulation of medicines and medical devices and equipment used in healthcare.  It is also responsible for the investigating harmful incidents which occur in patients taking any medicines or those with implants.  The MHRA also looks after blood and blood products.

Methotrexate:  A drug that interferes with cell growth and is used to treat rheumatoid arthritis as well as various types of cancer. Side effects may include mouth sores, digestive upsets, skin rashes, and hair loss.

Microscope: An optical instrument that uses a lens or a combination of lenses to produce magnified images of small objects, especially of objects too small to be seen by the unaided eye.

Milligram (mg):One thousandth of a gram.

Misalignment: The incorrect arrangement or position of something in relation to something else.

Mixed connective tissue disease (MCTD): A syndrome with a mixture of symptoms of systemic lupus erythematosus, polmyositis and other rheumatic diseases. MCTD is very rare in children.

‘Monitoring’ booklet: A booklet used toobserve and check the progress or quality of (something) over a period of time; keep under systematic review.

Morning Stiffness: Joint stiffness occurring after the joint has been kept immobile overnight. The duration of the morning stiffness is one indication of how much inflammation the child has in the joints.

Multi-disciplinary team: A group composed of members with varied but complimentary experience, qualifications, and skills that contribute to the achievement of the organisation’s specific objectives.

Muscle: A body tissue consisting of long cells that contract when stimulated and produce motion.

Musculoskeletal (MSK): Disorders that affect the body's muscles, joints, tendons, ligaments and nerves.

Musculoskeletal disorders (MSDs): Injuries and disorders that affect the human body's movement or musculoskeletal system (i.e. muscles, tendons, ligaments, nerves, discs, blood vessels, etc.). 

Mycophenolate mofetil (MMF): A newer DMARD.

Mydriatics: An agent that induces dilation of the pupil.

Myopathy: Any disease of a muscle.

Myositis: Inflammation of a muscle. This term is used to describe several different illnesses, including polymyositis, dermatomyositis and inclusion body myositis. These conditions involve chronic muscle inflammation, leading to muscle weakness.

N

National Ankylosing Spondylitis Society (NASS): Provides information mainly around the adult arena and an on-line forum.  It is however, limited for JIA.

National Institute for Health and Clinical Excellence (NICE): An arms-length government body that provides guidance sets quality standards and manages a national database to improve people's health. NICE’s duties include making recommendations to the NHS on new and existing medication/medicines, treatments and procedures, and treating and caring for people with specific diseases and conditions.

National Rheumatoid Arthritis Society: A charity, of which JIA@NRAS is a part of, providing information, education and support for people with rheumatoid arthritis, their families and carers through the provision of a website, telephone helpline and volunteer network. The Society also campaign at government level for greater priority to be given to the disease in the national health framework and for better access to best treatments and services. 

National Voices: A coalition of 50 national charities in England, which includes NRAS.

NHS Alliance: A membership organisation that brings together Clinical Commissioning Groups (CCGs), Primary Care Trusts (PCTs), clinicians and managers in primary care to improve services. NRAS is a member.

NHS Commissioning Board (NHSCB): The NHS Commissioning Board has been set up in shadow form. It will become nationally accountable for the outcomes achieved by the NHS. The board will provide leadership for the new commissioning system and provide support to the new CCGs. It will take on responsibility for commissioning certain specialised, high-cost services and work to ensure a fair and comprehensive service across the country.

NHS constitution: A document that brings together in one place details of what staff, patients and the public can expect from the NHS.

NHS future forum: An independent panel of health experts which the UK Government has appointed to advise it on changes envisaged in the Health and Social Care Act. The group is chaired by Steve Field, immediate past chair of the Royal College of GPs and the group reported its findings on 13 June 2011.

NHS outcomes framework (NOF): Sets out the outcomes and corresponding indicators used to hold the NHS Commissioning Board to account for improvements in health outcomes.

Non-biologic: A medicinal product, not a biological medication/ medicine, where the active substance is not a homo-molecular structure, but consists of different (closely related) structures that can't be fully quantitated, characterized and/or described by (physico-) chemical analytical tools. 

Non-specific goal: A goal which is not clear in relation to how, when and where it should be carried out.

Nonsteroidal anti-inflammatory drugs (NSAIDs): Medication/medicines  that relieve pain, fever and inflammation. These are often prescribed to treat arthritis inflammation and pain.

Nurse-led clinic: In a nurse-led clinic the nurse has his or her own patient case load. The service often involves an increase in the autonomy of the nursing role. The nurse-led clinic requires the patient to fit far more into a rigid time slot, often through an appointment system.

O

Occupational therapist: A health professional who teaches patients ways to reduce strain on joints while performing everyday activities. Occupational therapists also fit patients with splints and other devices to help reduce strain on joints.

Occupational therapy: Is the use of treatments to develop, recover, or maintain the daily living and work skills of people with a physical, mental or developmental condition.

Oligoarthritis: Inflammation in five or less joints in the initial six months.  

Ophthalmologist: A physician who specialized in the diagnosis and medical and surgical treatment of diseases and defects of the eye. Also known as an eye specialist.

Optometrist: A university/college graduate who goes on to have special training in performing eye examinations, prescribing glasses and fitting contact lenses. They are not physicians/medical doctors and do not perform surgery. In some areas, they may be allowed to prescribe medication/medicines. We recommend that treatment for uveitis and related eye problems, once diagnosed, be conducted under the care of an ophthalmologist.

Optometry: The practice of examining eyes for defects in eyesight and disorders in order to prescribe corrective lenses or other treatment.

Optometrist:  Allied health care specialists trained to examine the eyes to detect defects in vision, signs of injury, ocular diseases or abnormality and problems with general health.

Orthodontist: A dentist who specializes in preventing and treating problems with the development of the teeth and jaw.

Orthopaedic surgeon: A surgeon who specializes in surgery of the musculoskeletal system, its joints and related structures. Also known as an orthopaedic specialist.

Orthoptics:  The study or treatment of irregularities of the eyes, especially those of the eye muscles that prevent normal binocular (using both eyes) vision.

Orthoptist: Allied health professional  who works closely with ophthalmologists and optometrists and are primarily concerned with eye movements and inability of the eyes to work together.  

Orthotics: A term that includes devices that keep bones and joints in good positions (for example: splints, insoles).

Orthotist: A trained specialist who provides a range of splints, braces and special footwear to help your child’s mobility, correct your child’s gait and relieve discomfort if needed.  

Osteoarthritis:It occurs when the protective cartilage on the ends of your bones wears down over time. Although osteoarthritis can damage any joint in your body, the disorder most commonly affects joints in your hands, knees, hips and spine.

Osteopenia: The term for bone mass that is lower than usual but does not require treatment with medication /medicine unless there are special risk factors.

Osteoporosis: A condition resulting in the thinning of bones and an increased susceptibility to fractures. Unfortunately, corticosteroids, sometimes used in treating children with arthritis, can increase the risk of osteoporosis when used in children in high doses for extended periods of time.

Outcome measures in rheumatoid arthritis clinical trials (OMERACT): An international initiative to improve outcome measurement in rheumatology.

Outpatient clinic:  A clinic (or outpatient clinic or ambulatory care clinic) is a health care facility that is primarily devoted to the care of outpatients.

Over active: Excessively or abnormally active.

Over-dose: To take an excessive dose of medication /medicine. 

P

Pacemaker: an implanted device for stimulating the heart muscle and regulating its contractions.

Pacing: Move or develop (something) at a particular rate or speed.

Paediatric clinical network: A group of clinicians, healthcare professionals and patients that advise Clinical Commissioning Groups on the quality of a service with reference to specific paediatric disease areas.

Paediatric dosing: The determination of the correct amount, frequency, and total number of doses of a medication to be administered to a child or infant. Such variables as the age, weight, body surface area, and ability of the child to absorb, metabolize, and excrete the medication must be considered, as well as the expected action of the drug, possible side effects, and potential toxicity.

Paediatrician: A medical doctor with specialised training in the examination, diagnosis and treatment of disorders of childhood and adolescence.

Paediatric orthopaedic surgeonA medical doctor with specialised training in diagnosing and treating childhood and adolescence disorders of the bones, spine, joints, ligaments, tendons and muscles.

Paediatric pharmacist: Ensure the patient receives the necessary drug in a manner that allows the intended therapeutic effect to be realized.

Paediatric rheumatologist: A physician who has special training in the care of children and adolescents with arthritis and related conditions.

Paediatric rheumatology nurse specialist (PRNS): A trained children’s nurse who has specialist experience and has undertaken further training to be able to look after the child’s physical, emotional and social needs. Also known as Paediatric rheumatology clinical nurse specialist (CNS), Paediatric rheumatology Nurse practitioner or Specialist nurses.  

Pain management: The process of providing medical care that alleviates or reduces pain.

Pain relief medication: painkiller, analgesia

Paracetamol: A painkilling (analgesic) medication/medicine available over-the-counter without a prescription.

Patient Advisory Liaison Service (PALS): Offers confidential advice, support and information on health-related matters to patients, carers and families and tries to resolve disputes about healthcare matters.

Patient information leaflets (PILs): Leaflets containing specific information about medical conditions, doses, side effects that’s packed with medication/medicine to give the user information about the product.

Patient Participation Group (PPG): A PPG is a group of patients interested in health and healthcare issues, who want to get involved with and support the running of their local GP Practice.

Patient Reported Outcome Measure (PROM): A means of recording insights into the way patients perceive their health and the impact that treatments or adjustments to lifestyle have on their quality of life.

Peer review article: This refers to a type of research article that has been through the peer review process of having other doctors or health-care providers reading the article and helping approve it for publication before it is printed in a medical journal. Because of this extra layer of review these articles are viewed as being a reliable source for research information.

Pelvis:The large bony frame near the base of the spine to which the legs are attached.

Peripheral anterior synechiae (PAS):  An adherence (ie. sticking) of the iris (the coloured part of the eye) to the cornea.

Personal Health Budget (PHB): Aims to give patients more control over how their health needs are met. Those taking part in the pilot are allocated a sum of money each year, based on their needs. Patients are then expected to develop a plan with their healthcare team on how to use that budget. The money can be spent towards personal equipment, carers or alternative therapies not routinely available on the NHS.

Personal Independence Payment (PIP): Helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64.

Pharmacist: A person who is professionally qualified to prepare and dispense medicinal drugs.

Pharmacy: A hospital dispensary or shop where medicines and medicinal al drugs are prepared, dispensed or sold.

Photosensitivity: An abnormally heightened reaction to sunlight.

Physical examination: An evaluation of the body and its functions using inspection, palpation (feeling with the hands), percussion (tappingwith the fingers), and auscultation (listening).

Physiotherapist: A registered health professional who is a specialist in the use of exercises to treat physical conditions.

Physiotherapy: The treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery.

Placebo controlled trials:  A study in which the effect of a drug is compared with the effect of a placebo (an inactive substance designed to resemble the drug). In placebo controlled clinical trials, participants receive either the drug being studied or a placebo.

Placebo treatment: An inactive substance (also known as a ‘dummy’ drug) designed to resemble the drug which is sometimes given to patients taking part in a clinical trial. 

Plasma: The main component of blood. It contains substances that can be used to treat different conditions.

Platelet: A blood cell which circulates in the blood whose function is to clot and therefore stop bleeding.

Platelet count: A test to measure how many platelets you have in your blood. Platelets are parts of the blood that help the blood clot.

Play specialist:  Hospital play specialists work with children, parents and carers to help and support children and young people feel comfortable and less anxious about any treatments/investigations they may be undergoing whilst in hospital.

Podiatrist: A health professional who specializes in the study and care of the foot, including medical and surgical treatment.

Polyarthritis:  Inflammation in five or more joints are affected in the initial 6 months

Polymyositis/dermatomyositis: Related rheumatic diseases that cause weakness and inflammation of muscles.

Poorly controlled: Not controlled well.

Prednisolone: A synthetic steroid used in various compounds as an anti-inflammatory, immunosuppressive, and antiallergic drug.

Prescribed drugs: A prescription drug (also prescription medication/ medicine) is a licensed medicine that is regulated by legislation to require a medical prescription before it can be obtained. The term is used to distinguish it from over-the-counter drugs that can be obtained without a prescription.

Prevalence:  Refers to how often something occurs or is widespread.

Primary Care Trust (PCT): Primary care trusts were abolished on 31 March 2013 as part of the Health and Social Care Act 2012, with their work taken over by clinical commissioning groups.

Prognosis: The best estimate of the course of a disease and how its progress may affect a child’s growth and development.

Proteins: Large, complex molecules that play many critical roles in the body.

Proximal: Nearest; closest to any point of reference. The opposite of distal.

Psoriasis: A chronic skin disease characterized by scaly, reddish patches. Psoriasis also causes lifting of the nails and pitting, a condition in which the nails become marked with several small depressions.

Psoriatric arthritis: can affect any joint, usually the fingers and toes.  Often, psoriatic arthritis is diagnosed when there is no evidence of psoriasis in your child but there is a family member with psoriasis and some typical changes to the nails.

Psychiatrist: A medical doctor who specialises in the study, treatment and prevention of mental disorders. A psychiatrist may provide counselling and prescribe medication/medicine and other therapies.

Psychologist: A mental health-care professional who has received training in counselling and administering therapy. However, because they are not medical doctors, most may not prescribe  medication/ medicine.

Psychosocial: Relates to one's psychological development in, and interaction with, a social environment.

Puberty: The period during which adolescents reach sexual maturity and become capable of reproduction.

Q

Quality and outcomes framework (QOF): As part of a new NHS contract, introduced in 2004, GP Practices are financially rewarded for achieving the clinical and management quality targets and improving services for patients set out in this national document.

Quality, innovation, productivity and prevention (QIPP): A large-scale, transformational program for the NHS in England which involves all NHS staff, clinicians, patients and the voluntary sector. The goal is to improve the quality of care.

Quality standards: A set of concise statements developed by NICE which set out the core markers of high-quality patient care, covering the treatment and prevention of different diseases and conditions. They are derived from the best available evidence and will inform the forthcoming NHS Commissioning Outcomes Framework.

R

Radiographer:  An allied health professional that has been specially trained to take X-rays and perform ultrasound, CT and MRI scans.

Radiologist: Medical doctors or doctors of osteopathic medication/ medicine who specialize in diagnosing and treating diseases and injuries using medical imaging techniques, such as x-rays, computed tomography, magnetic resonance imaging, nuclear medicine, positron emission tomography and ultrasound.

Randomised controlled trials:A study in which people are allocated at random (by chance alone) to receive one of several clinical interventions. 

Raynaud’s phenomenon: An extreme sensitivity to cold that causes narrowing of the blood vessels in the fingers along with a sensation of tingling or numbness, and colour changes to the skin.

Reactive arthritis: A form of arthritis that develops as a reaction to certain types of infections.

Red blood cells: These cells carry oxygen from the lung to the rest of the body and remove carbon dioxide from the body and transport it to the lungs to be exhaled.

Relapse:  deterioration in someone's state of health after a temporary improvement.

Remission: A period of time when the symptoms of a disease or condition improve or even disappear altogether.

Review article: Review articles attempt to gather all the research data on one topic that can be found in numerous studies and summarize it. They are good for getting a broad understanding of a topic.

Reye’s syndrome: A potentially fatal syndrome that has numerous detrimental effects to many organs, especially the brain and liver, as well as causing a lower than usual level of blood sugar (hypoglycaemia). The classic features are a rash, vomiting, and liver damage.

Rheumatic diseases: A general term referring to conditions characterized by pain and stiffness of the joints or muscles. The term is often used interchangeably with “arthritis”, but not all rheumatic disease affects the joints or involves inflammation.

Rheumatic fever: An inflammation of the joints and heart that is a complication from an infection with the bacteria streptococcus (or “strep”) that infects the throat.

Rheumatoid arthritis (RA): A common inflammatory disease affecting the joints in adults (not children), particularly the lining of the joint. It most commonly starts in the smaller joints in a symmetrical pattern- that is, for example, in both hands or both wrists at once.   It is also sometimes referred to as Inflammatory Arthritis (see above).

Rheumatoid factor (RF): An antibody that appears in unusually high amounts in the blood of some people with rheumatoid arthritis.

Rheumatoid factor (RF) positive polyarticular: Causes inflammation in five or more joints within the first 6 months of juvenile idiopathic arthritis. Also known as polyarthritis, rheumatoid factor positive.

Rheumatoid factor (RF) test: A test to detect rheumatoid factor in the blood. A positive test may help with confirming a diagnosis or in predicting how severe disease will become. It is rarely positive in children unless they have RF-positive polyarthritis. A positive result can mean a greater risk of severe disease so aggressive treatment is often used.

Rheumatologist: A physician who specializes in the diagnosis, treatment and prevention or arthritis and other rheumatic disorders.

Rheumatology: It is a division of medication/ medicine that involves the evaluation and treatment of the rheumatic diseases and conditions. They are characterised by symptoms involving the musculoskeletal system. Many of these diseases also feature immune system abnormalities.

Rheumatology Commissioning Support Alliance (RCSA): A pilot venture between BSR, NRAS and Arthritis Care designed to support rheumatology service redesign.

Royal College of General Practitioners (RCGP): The main body responsible for representing the views of GPs, working to improve GPs education and training. Also funds independent research projects.

Royal College of Nursing (RCN): The main body representing nurses in the UK.

Royal College of Ophthalmology: The main body representing ophthalmologists in UK and promotes good clinical practice of ophthalmology.

Royal College of Ophthalmology guidelines: A range of clinical guidelines for eye care and treatment.  

S

Sacro-iliac joint: The SI joints connect the spine to the pelvis and are formed by the connection of the sacrum and the right and left iliac bones. The sacrum, or lower portion of the spine, is made up of five vertebrae that are fused together and do not move. The iliac bones are the two large bones that make up the pelvis.

Safety: The condition of being protected from or unlikely to cause danger, risk, or injury.

Scleroderma: A chronic hardening and thickening of the skin. Scleroderma is rare in children. There are two general categories of scleroderma: localized scleroderma, which mainly affects the skin, and systemic scleroderma (sclerosis), which may affect the skin as well as other parts of the body.

Scottish Medicines Consortium (SMC): The Scottish equivalent of NICE, which is responsible for approving single technology appraisal medication/medicines for use in NHS Scotland.

Scottish Network for Arthritis in Children (SNAC):An organisation set up by parents to support and help families of children affected by arthritis.

Scottish Paediatric and Adolescent Rheumatology Network (SPARN):  A network of health professionals involved in caring for children who have all kinds of rheumatological conditions.

Sedation:  The action of giving a drug (ie. sedative) to produce a state of calm or sleep.

Shared care guidelines: Developed when sophisticated or complex treatments that were initiated in secondary care are then prescribed by a general practitioner (GP). The guidelines set out the process that needs to be followed for the GP to take on prescribing responsibility. The term 'Effective Shared Care Agreement' (ESCA) is now being used.

Side effects: A secondary, typically undesirable effect of a drug or medical treatment.

Slit- lamp: A lamp which emits a narrow but intense beam of light, used for examining the interior of the eye.

Slit-lamp examination: A special eye examination given by an ophthalmologist to check for uveitis. The examination is painless and simply requires the patient to put their chin on the chin rest of a machine that shines a special light into the eye.

Social worker: Form relationships with people and assist them to live more successfully within their local communities by helping them find solutions to their problems. They engage not only with clients themselves but their families and friends as well as working closely with other organisations including the police, local authority departments, schools and the probation service.

Sonogram: A harmless and painless procedure which uses sound waves to create clear images of the soft tissues and the inside of joints. Most people will be familiar with ultrasound because they are used to look at a growing baby during pregnancy.

Sonographer: A radiographer who is specially trained to use the ultrasound scanner and also write the reports for the doctor to help them make a diagnosis.

Special educational needs coordinator:Designated person working in the school who has responsibility to coordinate assessment, monitoring and support for children with individual and special needs.

Specialist nurse: Specialist nurses are dedicated to a particular area of nursing.

Specific goal: A goal which is clear in relation to details about how, when and where it should be carried out.

Splint: Devices made of special plastic designed to help hold joints in the proper position during day or evening activities.

Splinting: Application of a splint, or treatment by use of a splint.

Spondyloarthropathies: Refers to any joint disease of the vertebral (spine) column. As such, it is a class or category of diseases rather than a single, specific entity. Also known as spondyloarthrosis.

Stem cell transplant: Also called a blood or marrow transplant is the injection or infusion of healthy stem cells into your body to replace damaged or diseased stem cells.

Sterile: Free from bacteria or other living microorganisms; totally clean.

Steroids: One of a large group of chemical substances classified by a specific carbon structure. Steroids include drugs used to relieve swelling and inflammation. 

Steroid injection: An injection of a steroid, usually into a joint, to relieve pain and inflammation.

Still’s Disease:  This is also referred to as systemic-onset JIA and is characterised by a fever or rash at the beginning of the illness (JIA). 

Strategic Clinical Network: A group of clinicians, healthcare professionals and patients that will advise CCGs on the quality of a service with reference to specific disease areas.

Subcutaneous: Located, found, or placed just beneath the skin; hypodermic.

Subcutaneous fat atrophy:  Loss of subcutaneous fat (see above).  This may occur at the site of repeated injections such as a steroid injection(s) site and may cause a deep depression/dimple in the skin and although it may last a few weeks, it will usually eventually fade.

Subluxation: A partial dislocation.

Subtalar joint: A joint in the ankle immediately above the heel bone. Also known as the talocalcaneal joint.

Sulphasalzine: A drug used in the treatment of ulcerative colitis, Crohn's disease, and rheumatoid arthritis.

Swelling: An abnormal enlargement of a part of the body, typically as a result of an accumulation of fluid.

Sycamore Trial: A randomised controlled trial of the clinical effectiveness, safety and cost effectiveness of Adalimumab for the treatment of juvenile idiopathic arthritis associated uveitis.

Symptoms: A physical or mental feature which is regarded as indicating a condition of disease, particularly such a feature that is apparent to the patient.

Synechiae:  A eye condition where the iris adheres to the cornea (anteria synechia) or the lens (posterior synechia).  It can be caused by ocular trauma, iritis or iridocyclitis and may lead to certain types of glaucoma.

Synovectomy: Surgery in which the diseased lining of the joint, the synovial membrane, or a portion on the lining is removed.

Synovial fluid: A clear fluid secreted by membranes in joint cavities, tendon sheaths, and bursae, and functioning as a lubricant. Also known as joint fluid, synovial.

Synovitis: An inflammation of a synovial membrane.

Synovium: The inner lining of the joint that produces synovial fluid, bathing and nourishing the cartilage. In JIA, it is actually the synovium which is inflamed. This is called synovitis.

Systemic immunosuppression: Medications given by mouth, injection under the skin or infusion into a vein.

Systemic lupus erythematosus (SLE or lupus): A rheumatic disease involving the skin, joints, muscles and sometimes internal organs. Lupus is a chronic inflammatory disease characterized by fever and rash that come and go. Most children with lupus develop the disease during adolescence.

Systemic onset JIA: - This is characterised by a fever or rash at the beginning of the illness (JIA).   It was also known as Still’s Disease.

T

Tacrolimus: An immunosuppressive drug that is used mainly after allogeneic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection.

Tariff: An agreed fixed price the NHS pays for a type of medical procedures. Different tariffs are paid according to the type of intervention undertaken

Telehealth: The delivery of health-related services and information via telecommunications technologies.

Temporomandibular joint (TMJ): the joint in front of the ears, where the lower jaw connects to the base of the skull. Arthritis may affect this joint in the same way it does others, by causing pain, stiffness and altered growth.

Tendon: A band of tough, rope-like tissue that attaches muscle to bone, so muscles can move the joint.

Tertiary specialist centres: Offer specialized consultative care, usually on referral from primary or secondary medical care personnel, by specialists working in a centre that has personnel and facilities for special investigation and treatment.

Test results: The outcome of a test conducted to ascertain (capability or endurance) of (a person or thing) by carrying our certain examinations.

The Musculoskeletal Services Framework (MSF): Developed in 2006, the document sets out a vision for how rheumatology and musculoskeletal problems should be treated in the NHS in England.

Therapist: A medical professional that specializes in providing a certain type of therapy. This could include but is not limited to physiotherapy, occupational therapy or mental health assistance.

Therapy:Treatment of illness or disability.

The S Factor campaign: A public awareness campaign about inflammatory arthritis, developed by the Rheumatology Futures Group and currently being supported by NRAS and Arthritis Research UK.

The Teapot Trust: Is dedicated to providing professional art therapy in a medical environment to children coping with chronic illness.

Tight control: A treatment strategy tailored to the individual patient with JIA, which aims to achieve a predefined level of low disease activity or remission within a certain period of time.

Tocilizumab: Licensed for use in patients with moderate to severe active rheumatoid arthritis when response to at least one disease-modifying antirheumatic drug or tumour necrosis factor inhibitor has been inadequate, or in those who are intolerant of these drugs. Tocilizumab can be used in combination with methotrexate, or as monotherapy if methotrexate is not tolerated or is contra-indicated.

Topical treatment: A topical treatment is a medication in the form of cream, foams, gels, lotion and ointments that is applied to body surfaces such as the skin.

Transcutaneous electrical nerve stimulation (TENS): A device which uses small pulses of electricity to relive pain.

Transition: The process or a period of changing from one state or condition to another.

Trauma: Physical injury.

Treatment: Medical care given to a patient for an illness or injury.

Treatment pathway: Guidelines proposing which treatments should be used in which order written and agreed by a multidisciplinary team.

Triage system: In medical terms this is a system for determining the urgency of an illness or injury to decide the order of treatment, especially in a large group of people. 

Triamcinolone acetonide (TA): A drug that is an acceptable alternative to Triamcinolone hexacetonide but produces many more systemic side effects due to an increase in systemic absorption.

Triamcinolone hexacetonide (TH): A drug with longer duration of remission, less systemic absorption, and without an increase in local side effects compared to other more soluble corticosteroid preparations.

Tuberculosis (TB): A contagious and an often severe airborne disease caused by a bacterial infection. TB typically affects the lungs, but it also may affect any other organ of the body.

Tumour necrosis factor (TNF): One of multiple proteins capable of inducing necrosis (death) of tumour cells that possess a wide range of proinflammatory actions. 

U

Ultrasound: A type of scan that uses high-frequency sound waves to examine and build up pictures of the inside of the body.

Under-dose:A dose of medication/ medicine which is less than required.

Undifferentiated arthritis:  This type of arthritis does not fit neatly into any one of the other types of JIA and so is given this name.

Urea: This is a naturally occurring waste product formed from the breakdown of proteins in the body and is usually passed out in urine.  A high level of urea (uremia) indicates the kidneys may not be working properly or that you are dehydrated.

Uveitis: A serious eye inflammation that is difficult to detect. Permanent eye damage can be avoided by having regular eye exams by an ophthalmologist. The term an eye doctor uses to refer to the condition depends on which part of the eye is affected.

Uveitis-related ocular hypertension: Intraocular pressure (IOP) is raised for a short time but does not cause any optic nerve or visual field damage.

Uveitic glaucoma: May be used when uveitis is associated with raised intraocular pressure, glaucomatous optic nerve damage and/or glaucomatous visual field defects.

V

Value-Based Pricing: A system of pricing  medication/medicines which aims to give NHS patients better access to effective and innovative medicines and incentivize pharmaceutical companies to develop new drugs in areas of unmet need.

Vasculitis: Diseases characterized by inflammation of the blood vessels. Forms of vasculitis include Henoch-Schonlein purpura (HSP), polyarteritis nodosa, Kawasaki disease, Wegener’s granulomatosis, Takayasu’s arteritis and Behçet's syndrome. These conditions can be primary childhood diseases or features of other syndromes such as juvenile dermatomyositis and lupus.

Vein(s): Any of the tubes forming part of the blood circulation system of the body, which returns blood to the heart.

Virus: This isa microscopic infectious organism that that multiplies inside the living cells of other organisms.

Vitreous member (see below): A delicate transparent membrane (also known as the hyaloid membrane) which is filled with vitreous humour.

Vitreous humour: A transparent gel-like substance which fills the chamber at the back part of the lens of the eye.  This fluid is enclosed in a delicate transparent membrane called the vitreous membrane (also known as the hyaloid membrane).

Vitritis: Inflammatory within the vitreous humour of the eye.  Patients may complain of floaters and/or blurred vision.

Vocational:Relating to an occupation or employment.

W

Welfare Reform Act: A piece of legislation which introduced a 'Universal Credit' in 2013 to replace a range of existing means-tested benefits and tax credits for people of working age.

White blood cells: These cells are part of the immune system and help to protect the body against infectious disease, viruses and foreign invaders.

White blood cell count (WBC):  A test to measure the number of white blood cells (WBCs) in the blood. WBCs help fight infections.

Window of opportunity: A favourable opportunity for doing something that must be seized immediately.

Work Capability Assessment (WCA): The main assessment for Employment and Support Allowance claims.It may include a medical assessment if more information is needed about a claimant’s illness or disability.

X

X-ray: A photographic or digital picture of the inside of your body such as your bones, heart, lungs. 

Y

Yellow Card Scheme: This is the UK system for collecting information on suspected adverse drug reactions (ADRs) to medicines. The scheme allows the safety of the medicines and vaccines that are on the market to be monitored.

 Yellowish fluid: A clear yellowish, slightly alkaline, coagulable fluid, containing white blood cells in a liquid resembling blood plasma that is derived from the tissues of the body and conveyed to the bloodstream by the lymphatic vessels.

Z