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"Disease focus" - Counting the cost of lupus

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    Lupus has a major impact on the lives of those directly affected, as well as on their families and their wider communities. The disease, which primarily affects women of child-bearing age, also takes an economic toll by increasing the use of healthcare resources and reducing ability to work1.

    Lupus is a chronic autoimmune disease that can affect any organ of the body. The immune system, which normally protects us from infection by viruses or bacteria, mistakenly recognises the body’s own cells as potential sources of infection.

    When the immune system is constantly switched on it causes chronic tissue inflammation and, eventually, organ damage. Symptoms of lupus – and their severity – can vary greatly but may include joint swelling, a disfiguring rash, chronic fatigue, headaches, fever, hair loss, abnormal blood clotting, sensitivity to light, severe pain and anaemia.

    Patients often cite severe fatigue as the most debilitating symptom of all2 . The course of the condition is characterised by periods of ‘flare’ following by periods of improvement or remission.

    People with lupus also report that their illness affects their family lives, their ability to plan and their general psychological well-being3 . Depression, demoralisation and helplessness are commonly cited as being associated with lupus.

    Because all of these symptoms are commonly seen in several diseases, lupus is sometimes confused with other conditions.

    The prevalence of lupus appears to vary from country to country but prevalence rates generally range from 20 to 70 per 100,0004. The disease most commonly strikes women between the ages of 15 and 44 years and women are 9 times5 more likely than men to be diagnosed with lupus. Indian, Afro-Caribbean, African, Hispanic, Asian and Native American ethnic groups are also known to be at higher risk of developing the disease.

    Human toll
    The debilitating fatigue that comes with lupus can significantly affect the social functioning of people with the condition. A typical middle-aged female patient of child-bearing age could find their family life significantly curtailed, along with their ability to contribute to their communities.

    Lupus – the disease and the treatment – can significantly impair the ability to have children.

    People with lupus who have children often say they cannot be as actively involved as they would like. Perhaps they are too ill to help with homework, too exhausted to coach sports teams, or unable to commit to regularly driving to dance classes. This in itself, while difficult to measure, can be deeply upsetting for all concerned.

    Lupus can rob people of their identity while depriving society of the kinds of contributions that make communities tick.

    In severe cases of the disease, a further social cost is incurred if other members of a family devote time to caring for the individual directly affected. Time spent caring for a loved one is time that cannot be spent making other contributions to society.

    Economic burden
    Despite its relatively low prevalence, the direct cost of managing lupus is high. Lupus, and its associated complications such as infection and cardiovascular events, can cause hospitalisation.

    This can arise, in part, due to the use of steroid treatments which incur low direct costs but can lead to cardiovascular complications and damage6 .

    Specialist consultation, GP visits, diagnostic tests mean the direct costs of caring for patients can run into thousands of euros. Add to that the non-healthcare costs, such as transport to visit health professionals and the time taken by caregivers to accompany patients at medical appointments, and a fuller picture of the economic impact of lupus emerges.

    The indirect costs of the disease can be no less severe. The main factor is loss of productivity – either through reduced working hours or enforced permanent unemployment7 . The symptoms of lupus, including fatigue and depression, make it difficult for people with moderate to severe disease to hold down a job.

    Indeed, patient surveys show it is often the fact that they cannot work which bothers patients more than other physical symptoms.

    Family finances can be dealt a double blow if one member is forced to leave work while another reduces working hours to care for the individual directly affected by lupus.

    Cutting costs?
    Better disease control is cost-saving. Studies show that delayed diagnosis and treatment of lupus leads to significantly poorer outcomes8 . There is also an urgent unmet need for therapies which are effective and well-tolerated9 .

    Well-managed lupus can stall disease progression and limit organ damage, thus improving physical functioning and lowering levels of fatigue. This cuts the direct costs of lupus by reducing hospitalisation and the use of healthcare resources, while limiting indirect costs by allowing people to remain in employment for longer.

    Managing lupus well is better for patients, society and the economy.

    References
    1. Lerstrom K, Crimmings M, Govoni M, Merrill JT, Isenberg D. Impact of systemic lupus erythematosus on patients' employment, family relationships, and overall well-being. EULAR conference; June 16-19, 2010; Rome, Italy. Ann Rheum Dis 2010;69(Suppl 3):753.

    2. Schneider M, Gordon C, Lerstrom K, Govoni M, Nikai E, Isenberg D. Impact of lupus on fatigue, health-related quality of life and work productivity: results from the Lupus European Online (LEO) survey. Poster session presented at: EULAR conference, May 25–28,  2011; London, UK.

    3. Lerstrom K, Crimmings M, Govoni M, Nikai E, Merrill JT, Isenberg D. Disease Symptoms, Treatment Satisfaction, and Coping Strategies in Patients with Lupus. Poster session presented at: EULAR conference, May 25–28, 2011; London, UK.

    4. Pons-Estel GJ, Alarcon GS, Scofield L, Reinlib L, Cooper GS. Understanding the epidemiology and progression of systemic lupus erythematosus. Semin Arthritis Rheum 2010;39(4):257-68

    5. Heyneman CA. Systemic Lupus Erythematosus: A Therapeutic Update. J Pharm Pract 2009;22(1):29-52

    6. Shah M, Chaudhari S, McLaughlin TP, Kan HJ, Bechtel B, Dennis GJ, et al. Cumulative burden of oral corticosteroid adverse effects and the economic implications of corticosteroid use in patients with systemic lupus erythematosus. Clin Ther 2013;35(4):486-97.

    7. Schneider M, Strand V, Nikai E, Wood R, Smets E, Lobosco S. An assessment of impairment of productivity among SLE patients. Poster session presented at: ISPOR conference, 3–7 November 2012; Berlin, Germany.

    8. Strand V, Galateanu C, Lobosco S, Pushparajah DS, Sayers J, van Vollenhoven RF. Limitations of current treatment for systemic lupus erythematosus: a patient and physician survey. Poster session presented at: ACR conference, November 9-14, 2012; Washington, DC, USA.

    9. Zonana-Nacach A, Barr SG, Magder LS, Petri M. Damage in systemic lupus erythematosus and its association with corticosteroids. Arthritis Rheum 2000;43(8):1801-8.

    MISC-OTH-024987-102013

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