Epidemiology

It is difficult to establish the true epidemiology of musculoskeletal disease in adolescents. There are practical difficulties measuring incidence and prevalence of disease in a patient group that may be under pediatric or adult care and for whom there is no universally accepted age range (Chapter 1).

There is an estimated 2589 incident cases of rheumatic conditions per 100,000 population in the 0-15 age group, and 8935 per 100,000 population in the 16-24 year old age group (1). However, this estimate is not exhaustive, and only covers 10 musculoskeletal conditions selected as the most common or characteristic of their group. Specific adolescent data (10-19 year old age group) are lacking. If this group of 10 conditions is restricted to those requiring continuing secondary health care, (childhood arthritis, SLE, gout, and scleroderma) there is an estimated 129 and 188 prevalent cases per 100,000 population in the 0-15 and 16-24 year old age groups respectively, according to data available (1).

Musculoskeletal symptoms make up the third most common reason for presentation of adolescents in primary care (2). In a nationally representative survey exploring the health status and behaviors of Canadians, adolescent arthritis or rheumatism lasting six months or more, affected seven per 1000 of patients aged 12 to 19 years (3). Chronic back pain, unrelated to arthritis, affected 30 per 1000 adolescents (3).

Epidemiology is complicated by genetic diversity and environment, which play an important part in inflammatory musculoskeletal disease. For example, large regional variations in epidemiology exist among distribution of subsets of juvenile idiopathic arthritis (JIA), probably due to human leucocyte antigen (HLA) alleles and environment (4). Likewise, lupus is three to five times more common in African-American females compared to white females, and twice as common in African-American males (5).

Collection of epidemiological data is difficult in rare diseases, such as juvenile dermatomyositis. For example, the British Paediatric Surveillance Unit found an estimated frequency of new cases in the United Kingdom to be 1.9/million in children less than 16 years (6). This is likely to be an underestimate, since some cases may not have been reported, or may have presented to specialists not included in study (such as adult neurologists). More recent studies in the United States, give estimates up to 4.1/million (7). Reasons for differences are unclear, although, inflammatory myositis has been noted to be more common in Blacks (8) and may be precipitated by high sun intensity (9).

This chapter aims to provide an overview of adolescent rheumatolo-gical conditions not represented in other chapters in this book, including vasculitis, juvenile dermatomyositis, scleroderma, musculoskeletal infections, systemic diseases presenting to rheumatology and musculoskeletal malignancies. More unusual presentations, such as periodic fever syndromes and Castleman's disease, are covered briefly.

Caring for adolescents requires an awareness and sensitivity of a patient's developmental and psychological needs. These vary with individuals and differ from those of a child or adult. Some of these needs are addressed and summarized in Table 1. Adolescents appreciate participation in their own care, with their concerns and viewpoints taken seriously (10).

Table 1 Adolescent Issues in Rheumatological Diseases

Specific issues

Possible solutions

Image conscious. Dislike steroids in view of adverse effects, particularly weight gain, striae, and acne. NB: Increased steroid toxicity in peripubertal period Alcohol, drugs, smoking, and risk-taking behavior

Sexual behavior

Adherence/ concordance

Disability

Informed consent prior to use of drugs. Use IV methylprednisolone pulsing to quickly get inflammation under control in order to minimize use of oral steroids. Early use of immunosuppressive medication. Healthy eating advice to limit weight gain. Camouflage nurses may give advice on treatment of stretch marks and makeup use. Early aggressive treatment of JDM may decrease the chance of lipoatrophy and calcinosis, both distressing for adolescents.

Make sure adolescents know about effect of alcohol on methotrexate in the context of health promotion. Assess understanding of information given. Negotiate. Advise taking methotrexate on a day when not binge drinking, and advise an alcohol limit. Ensure awareness of atherosclerosis risk with smoking, particularly in conditions with vasculopathy. Also, implications of decreased ventilatory capacity in JDM and systemic sclerosis. Education is best provided through a multidisciplinary team.

Sexual health advice, as given to all young people, to include barrier methods to reduce sexually transmitted infections. Make sure adolescents know about tetarogenic effects of drugs such as methotrexate, and give contraceptive advice. Contraception advice should take into account the presence of anticardiolipin antibodies. Fertility issues with cyclophosphamide should be explained directly to the adolescent in an developmentally and age appropriate manner and sperm/egg storage offered if possible. When adolescent is sexually active, give advice re: regular cervical screening.

With flare-ups or poor control of disease, always consider nonadherence with treatment. Question in a nonconfrontational way. Decriminalize—"When was the last time you forgot?" Compromise with the adolescent, stressing important treatments and perhaps sacrificing those that are less important (see Chapter 5) Consider once-daily dosing regimens if at all possible.

Aggressive early treatment (medical and physiotherapy/ occupational therapy) to prevent contractures and deformity. Provide practical help with driving, financial-benefit eligibility, and aids for daily living to promote independence.

(Continued)

Table 1 Adolescent Issues in Rheumatological Diseases (Continued)

Specific issues

Possible solutions

Diet and exercise, including bone health

Schooling, college, university, and work

Holidays without parents and travel abroad

Peer support

Education regarding healthy eating, taking into account risk of atherosclerosis, osteoporosis, and obesity (particularly if pain and disability is limiting exercise). Discuss weight bearing activities; assess need for calcium and vitamin D supplementation or bishosphonates (see Chapter 12). Educate about the benefits of exercise for building muscle strength and stamina, protecting joints, and preventing mechanical pains secondary to muscle weakness

Good communication with schools and colleges with letters of support as needed. Poor concentration and fatigue is common in inflammatory conditions, making schooling challenging. Career advice may be necessary and practical support for job interviews, including training in disclosure

Need knowledge of medications and what to do if become unwell when away. Holiday insurance. Vaccinations. Spare supplies of medication in hand luggage. Informing airline of need to travel with needles. Need awareness that sun exposure may lead to a flare of dermatomyositis or lupus—stress need for sun block, hats and sleeves. Increased risk taking behavior when away with peers

Signpost young person to peer support organizations or websites, for example, www.ablelink.org/

www.lehman.cuny.edu/faculty/jfleitas/bandaides/

index.html www.teenagehealthfreak.org www.doctissimo.fr www.ciao.ch www.teenhealthfx.com www.goaskalice.columbia.edu www.childrenfirst.nhs.uk

In order to maximize adherence to medical and physical treatments, a young person needs to be involved in shared decision making within a multi-disciplinary team.

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