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RA patients who speak up can improve disease management

Source:Ringier Medical     Date:2015-06-04
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A GLOBAL survey of more than 3,600 adults with rheumatoid arthritis (RA) in 13 countries initiated by Pfizer finds that a patient’s perception of their RA and its treatment, as well as their relationship with their HCP, can impact the management of their disease.1 The RA NarRAtive patient survey is the first of its kind to simultaneously evaluate the patient and healthcare professional (HCP) relationship and communication, as well as the patient’s experience and satisfaction with treatment and disease management. 
“More than 23 million people worldwide have RA, many of whom are struggling to manage living with this debilitating illness. The RA NarRAtive survey results indicate that some of the keys to living successfully are having open dialogue and setting treatment goals with healthcare professionals, as well as connecting with patient support groups,” said Freda Lewis-Hall, MD, executive vice president and chief medical officer, Pfizer. 
The survey was fielded online by Harris Poll between September 2014 and January 2015 as part of the company’s ongoing global collaboration with the RA NarRAtive Advisory Panel comprised of 27 RA experts – including physicians and leaders from patient advocacy groups. Survey data illustrate:
Patients’ perceptions of their RA treatment satisfaction and their relationships with their HCP can positively impact the management of their disease.1 The survey shows that patients who feel comfortable raising concerns and fears with their doctor or health care professional (HCP) are more likely to describe their current overall health as excellent or good (43% vs 29%) than patients who are uncomfortable.1
Yet, barriers remain. There is a disconnect between self-reported treatment satisfaction and status of disease that can impact RA management.1 In the survey, nearly 4 in 5 patients who are taking prescription medicines for their RA are satisfied with their regimen (78%) but only 30% of those same patients self-described their RA as “under control.” This disconnect between professed satisfaction and perceived control is even more pronounced in patients whose HCP has described their patients’ RA as moderate-to-severe or severe.
Although shared decision-making when establishing treatment goals is a widely acknowledged best practice, the survey shows that patients may not be communicating goals and/or concerns to their HCPs, especially surrounding RA disease management and treatment options.1 Although the majority of patients who currently see an HCP to manage their RA (83%) state they are satisfied with the communication they have with their HCP about their RA treatment, the majority of patients (85%) also note that there are some things that would help them more successfully manage their RA when it comes to their relationship with their HCP.
Some patients may not be achieving optimal disease management despite the availability of numerous treatments and treatment regimens.1 Forty-seven percent (47%) of all patients with RA surveyed have stopped doing or participating in certain activities. Moreover, when asked about RA medication(s), 42% of all respondents agree that treating their RA is as difficult as living with the disease.
“The survey indicates optimal RA management may not be occurring when patients do not feel encouraged to express goals, ask questions and accurately convey their satisfaction or lack thereof,” explains RA NarRAtive Advisory Panel co-chair Dr. Alan Gibofsky, rheumatologist, Hospital for Special Surgery. “The RA NarRAtive Global Advisory Panel encourages physicians not to take a ‘satisfied’ response at face value and ask more follow-up questions when assessing the disease activity status of their patients with RA.”
Members of the RA NarRAtive Global Advisory Panel (from left, back row): Cindy McDaniel (Arthritis Foundation, US), Prof. Nurullah Akkoc (Dokuz Eylul University, Turkey), Dr. Ara Dikranian (San Diego Arthritis Medical Clinic, US), Clare Jacklin (National Rheumatoid Arthritis Society, UK), Cheryl Koehn (Arthritis Consumer Experts , Canada), Dr. Maria Celina de La Vega (Medica Reumatologa Universitaria, Argentina); and (from left, front row): Wendy Favorito (Arthritis Australia, Australia), Rolande Guastalli (Association National de Défense contre L’Arthrite Rhumatoide, France), Tini Jordán (Alianza Federal de Asociaciones de Pacientes con AR, Argentina), Adriana Paula de Oliveira (Associação Nacional dos Participantes de Fundos de Pensão , Brazil), So-Hee Kim (Penguin, South Korea)
RA NarRAtive is an ongoing initiative sponsored by Pfizer and led by the Global RA NarRAtive Advisory Panel. To complement the patient survey, the RA NarRAtive will explore rheumatologist opinions by fielding a corresponding survey.
“The data from the RA NarRAtive showcase how shared decision-making practices can help improve patient outcomes,” comments Clare Jacklin, director of External Affairs, National Rheumatoid Arthritis Society (NRAS). “We need to elevate the voice of the patient in conversations around setting RA disease management and treatment goals.”
Rheumatoid arthritis (RA) is a chronic, inflammatory autoimmune disease that typically affects the hands and feet, although any joint lined by the synovial membrane can be affected.2 RA causes a range of symptoms, including stiffness and swelling in the joints,3 particularly those in the hands, feet and knees.2
Although the exact cause of RA is unknown, 2 it is considered to be an autoimmune disease, because the immune system in people with RA mistakes the body’s healthy tissues for a threat and attacks them.2 Some people are at increased risk of developing RA, including people with a family history of RA, smokers and women.4 Three times as many women are affected by RA compared to men.3 RA affects approximately 23.7 million people worldwide5 and 1.6 million people in the United States.6,7 It can develop at any time during adulthood, but it usually occurs between 40 and 70 years of age.3
1 Data on file. Pfizer Inc, New York, NY. [RA NarRAtive Patient Survey. 2015.]
2 Medline Plus, “Rheumatoid Arthritis” Accessed 11 October 2011.
3 Lee DM, Weinblatt ME. Rheumatoid arthritis. Lancet. 2001; 358:903-911.
4 Mayo Clinic, “Rheumatoid Arthritis.” Accessed 14 September 2011. 
5 World Health Organization, “The Global Burden of Disease, 2004 Update.” 
6 Sacks, J., Lou, Y., Helmick, C. Prevalence of Specific Types of Arthritis and Other Rheumatic Conditions in the Ambulatory Health Care System in the United States 2001-2005. Arthritis Care and Research. 2010. 62(4): 460- 464.
7 Howden, L., Meyer, J., 2010 U.S. Census Bureau results --- U.S. Census Bureau, 2010 Census Summary File 1.
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