Juana Mata was diagnosed with rheumatoid arthritis in April 2009. In May 2009 she ended up in the hospital with a variety of symptoms and was sent home with a diagnosis of anxiety because she insisted that something was wrong. She refused to go home unless she had testing done, after the testing was completed. She was admitted to ICU with platelet count of 2,000 (normal is 150,000-450,000), she was diagnosed with thrombocytopenia and systemic lupus. If she would have gone home that day she would have died. She was scared and knew very little about lupus, she wanted to learn, and empower others about self advocacy.

In this interview from Overdrive, the Rheumatology Network podcast, Dr. Kim Gorgens, a psychologist and Rheumatology Network board member, interviews Ms. Mata and her sister, Estela Mata-Carcamo, about their work to support, empower and educating women and men living with lupus.

The sisters recently presented their work at the annual meeting of the American College of Rheumatology, which took place last month.

 is Clinical Professor and Director of Continuing Education, Graduate School of Professional Psychology, University of Denver. For more articles from Dr. Gorgens, visit her blog 

 • ACR Convergence 2020. Date: Sunday, November 8, 2020. "Knitting a Community of Hope”- Supporting, Empowering and Educating Those Living with Lupus, and Overlapping Conditions and Their Loved Ones via in Person and Virtual Support Groups That Include Art Therapy, and Wellness Techniques Is Key; Mental Health Is as Important as Physical Health." Juana Mata (1) and Ma. Estela Mata-Carcamo (2), (1)Looms for Lupus, La Puente, CA, (2) Looms for Lupus, Baldwin Park, CA

Podcasts

In this episode of Overdrive, the Rheumatology Network podcast, Dr. Kim Gorgens interviews two sisters who've turned a negative healthcare experience into a positive force for change in the lupus community through advocacy. They shared their story during the Patient Perspectives session at the annual meeting of the American College of Rheumatology which was held last month. In this interview, they share their story with Dr. Gorgens.


Lupus Patient Perspectives:  Self Advocacy

Anxiety and depression are not uncommon among lupus patients, show studies recently presented at the annual meeting of the American College of Rheumatology.

A Chinese study presented by Yongfu Wang showed that a higher prevalence of anxiety and depression were associated with higher levels of disease activity in patients with systemic lupus erythematosus (SLE).

Like other studies presented at the meeting, the researchers designed novel tools and solutions designed to track symptoms. Dr. Wang, of Inner Mongolia University of Science and Technology, and his team designed a mobile tool called Smart System of Disease Management (SSDM) mobile app in which patients could track disease activity. They found that the higher the disease activity, the higher the anxiety. The mobile app proved to be a useful tool in tracking both conditions.

Lilian Cano-Cruz of the Instituto Nacional De Ciencias Medicinas y Nutricion Salvador Subirán in
Mexico City, compared lupus outcomes among female and male patients finding that females in this study had lower disease activity, but exhibited more anxiety and depression and lower quality of life as compared to men who had higher disease activity. "It is important that rheumatologists take these findings into account, in order to establish optimal support according to gender," researchers

Mental health symptoms should be addressed in rheumatic disease patients as a result of COVID-19, Shereen Mahmood wrote in her ACR 2020 abstract In this survey of 202 patients, 56 percent had at least mild symptoms of depression, 16 percent had moderate signs of depression, 12 percent had severe depression. 106 (48 percent) patients had at least mild symptoms of anxiety, 31 (14 percent) had moderate, 20 (9 percent) had severe. All mental health scales were moderately correlated with the COVID-related distress scale.

In a cross-sectional study of psoriatic arthritis patients 688 cases, physicians reported anxiety and/or depression in 14.2 percent of patients, while 36.6 percent of patients self-reported having anxiety and/or depression. Patients with anxiety and/or depression had worse QoL, higher work impairment, and greater disability.

After adjusting for demographic and clinical factors, patients with anxiety and/or depression were found to have worse quality of life, work productivity, and disability outcomes than those without. Differences between patient and physician reports of anxiety and/or depression suggest that physicians may not be aware of the extent to which PsA patients experience anxiety and/or depression," wrote authors who were led by Laure Gossec of Sorbonne University in Paris.

Disease Activity and Mental Health in SLE Patients: A Cross-section Study with Self-Assessments Based on Smart System of Disease Management (SSDM) Mobile Tools.

 Sex Differences in Mental Health and Quality of Life and Their Impact in the Treatment of Patients with Systemic Lupus Erythematosus
Lilian Cano-Cruz. Date: Sunday, November 8, 2020

. COVID-Related Distress and Mental Health in Adult Rheumatology Patients During the COVID-19 Pandemic. Shereen Mahmood

Anxiety and Depression in Psoriatic Arthritis (PsA) – Prevalence and Impact on Patient Reported Outcomes: Real-World Survey in the US and Europe
Laure Gossec.

Articles

Stress Can Take Its Toll Rheumatic Disease

Dr. Andrew Concoff brings tremendous range and unique experience to envisioning the future practice of musculoskeletal medicine. After completing fellowships in rheumatology and sports medicine and a Career Development Award from the National Institutes of Health to study exercise for osteoarthritis, Dr. Concoff has developed novel, hybrid approaches to treating musculoskeletal disorders over the course of over 20 years in private practice. He is also a nationally recognized expert in the diagnostic and procedural musculoskeletal ultrasound in rheumatology and sports medicine. For twelve years, Dr. Concoff supervised a renowned wellness center where he developed evidence-driven physical therapy protocols and holistic care paradigms incorporating mind-body approaches, acupuncture, massage therapy, Pilates, yoga and nutritional interventions.

Dr. Concoff is focused on advancing value in the practice of musculoskeletal medicine as Chief Value Medical Officer for United Rheumatology. He has created innovative programs, supported by economic modeling, to evolve specific aspects of clinical care toward better outcomes and lower costs. His programs span the range of musculoskeletal medicine from shoulder and low back pain to osteoarthritis of the knee, as well as a variety of autoimmune diseases.

“The Sports Rheum I” is an introduction to the clinical interface between rheumatology and sports medicine. Several examples are provided to illustrate the rich opportunities provided by this approach. A general description of the pathophysiology of joint damage in osteoarthritis forms the basis for the complementarity of exercise and pharmacologic intervention in osteoarthritis. Two clinical cases are provided to demonstrate the challenges of diagnosing athletes that present with rheumatic disease. An initial introduction to the application of advanced physical therapy techniques to improve strength without antagonizing affected arthritic joints is also provided. Finally, a description of the application of complementary medicine approaches to musculoskeletal disorders is presented.

Each of these examples will be explored in greater depth in subsequent episodes of The Sports Rheum as a part of The Concoff Method from The Rheum Additional series will explore the challenges of practicing medicine during the COVID-19 pandemic, The COVID Rheum, and efforts to evolve musculoskeletal medicine toward better outcomes and lower costs, The Value Rheum.

Videos

In today's issue of Rheumatology Network, we introduce The Concoff Method, a new column by Andrew Concoff, M.D., a rheumatologist who serves as executive vice president and chief value medical officer of United Rheumatology. Over the course of the next year, Dr. Concoff will publish columns that address sports medicine, value in rheumatology and managing a medical practice in the era of COVID-19. In this inaugural issue of the column, he covers the interface between sports medicine and rheumatology. 

Introducing the Concoff Method:  The Interface Between Sports Medicine and Rheumatology

Osteoporosis Not Just a Disease of Women

Underdiagnosed and Undertreated

Osteoporosis and COVID-19

In this interview, Jeffrey Curtis, M.D., of the University of Alabama at Birmingham, addresses osteoporosis in men. It's more common than physicians may realize. "It is often misconstrued as a disease that mainly, if not only, effects Caucasian women, which is not the case,” he said.

Treatment Choices:  Rheumatoid Arthritis Case Study

Rheumatoid Arthritis Case Review: 53-year-old Female RA Patient Who Is Biologic Naive

Dr. Christopher Parker, a rheumatologist with The Austin Diagnostic Clinic in Austin, Texas, reviews the following case of a women with rheumatoid arthritis interested in receiving a JAK inhibitor.

Case Study:  53-year-old woman with rheumatoid arthritis

Methotrexate can reduce inflammation and improve function in knees with osteoarthritis, researchers report.

“We should look for inflammation in symptomatic primary knee osteoarthritis patients, and, if found, we should treat it by ant-inflammatory agents,” said Biswadip Ghosh, M.D., an associate professor in the Department of Rheumatology, at the Institute of Post Graduate Medical Education and Research in Kolkata, India.

He presented the finding at the annual meeting of the American College of Rheumatology on Sunday.

Inflammation is a major cause of pain and loss of joint function in patients with primary knee osteoarthritis. There are no widely accepted drug therapies for the condition.

Dr. Ghosh and his colleagues wanted to see if oral methotrexate might help treat this condition, so they recruited 249 patients with radiographic evidence of osteoarthritis and swelling and pain in both joints for at least six months.

This population excluded anyone who had inflammatory arthritis, secondary or advanced osteoarthritis, had undergone arthroscopy, had received intra-articular steroid injections in the preceding three months, or had uncontrolled diabetes, gout, renal diseases, or hepatic diseases.

From this group, they identified 172 patients who had increasing erythrocyte sedimentation (ESR) or c-reactive protein rates. Of these, 137 completed the study.

The researchers randomly assigned 78 of the patients to take 15-20 mg/week of oral methotrexate, and 59 patients to take 1,500 mg/day of glucosamine as a placebo.

To improve study compliance, the researchers allowed patients to take tramadol or acetaminophen for pain and prescribed all patients nonsteroidal anti-inflammatory drugs (NSAIDs) for 7-10 days at the beginning of the study.

After three months, the patients taking methotrexate improved while those taking glucosamine did not.

The erythrocyte sedimentation rate (ESR) of the patients taking methotrexate was 35 versus 43 for the patients taking glucosamine. C-reactive protein (CRP) was non-reactive in the methotrexate group and reactive in the glucosamine group. The Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) score was 38 in the methotrexate group and 43 in the glucosamine group.

Dr. Ghosh advised clinicians to treat inflammation in their osteoarthritis patients. “Methotrexate may be considered in such patients if conventional treatments fail,” he said.

“Comparison of Methotrexate and Glucosamine in Primary Knee Osteoarthritis with Inflammation.” 

The annual meeting of the American College of Rheumatology. 6:00 AM Monday, Nov. 9, 2020.

Methotrexate can reduce inflammation and improve function in knees with osteoarthritis (OA), researchers report.

Methotrexate Reduces Knee Inflammation in Primary Knee Osteoarthritis

How to identify patients with psoriatic arthritis at an earlier stage was a popular theme of research presented at the annual meeting of the American College of Rheumatology on Friday November 6.

More than half of patients with psoriatic arthritis have to wait two or more years for a diagnosis, and time to diagnosis has not significantly improved over the last two decades, a study by Paras Karmacharya, M.D., from the Mayo Clinic, Rochester, Minn., and colleagues found.

Their findings come from an analysis of 162 patients diagnosed with psoriatic arthritis between 2000 and 2017. Median time from joint symptoms to diagnosis by a physician was 2.5 years, with 23% diagnosed at 6 months, 35% at one year and 45% at two years.

Younger patients and those with a higher BMI and enthesitis before diagnosis were more likely to experience a diagnostic delay of more than two years, while patients with sebopsoriasis were less likely to experience diagnostic delay. Radiographic damage may be associated with diagnostic delay, the researchers said, but did not achieve statistical significance in their study perhaps due to the small sample size.

Karmacharya and colleagues study highlights the need to find highlighting the need to find preclinical signs of psoriatic arthritis that will enable providers to identify and treat patients earlier.

Alexis Ogdie-Beatty, M.D., MSCE, of the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, and colleagues used administrative claims data on 13,661 patients diagnosed with psoriatic arthritis in an attempt to identify potential predictors of psoriatic arthritis in the six years prior to their diagnosis.

RELATED:  Fewer Than Half of Psoriatic Arthritis Patients Report Obvious Side Effects

Each psoriatic arthritis patient was matched by age, sex, geographic location, insurance, and enrollment duration with two patients who did not have the condition.

Compared with controls, patients with psoriatic arthritis had an increased history of coding for arthritis and skin issues including osteoarthritis (48% vs 22%), rheumatoid arthritis (18% vs 2%), inflammatory polyarthropathy (18% vs 1%), and psoriasis (60% vs 2%). Psoriatic arthritis patients without a prior diagnosis of psoriasis were more likely to have a coding for other forms of arthritis.

Diagnoses of psoriasis, different types of arthritis, axial symptoms, and tendonitis/enthesitis steadily increased as the time of psoriatic arthritis diagnosis drew nearer, along with the frequency of rheumatology visits.

Another retrospective population-based study by Karmacharya and colleagues highlighted that transition from psoriasis to psoriatic arthritis was more likely to be delayed in patients with a family history of psoriasis and severe psoriasis.

The study was based on 157 patients with psoriatic arthritis, 51% of whom had concurrent psoriasis and 49% had psoriasis before a diagnosis of psoriatic arthritis. The researchers found that family history of psoriasis (odds ratio= 2.71; 95% CI 1.24, 5.90) and severe psoriasis (OR=1.96; 95% CI 1.26, 3.06) were more likely in patients who had a delay in transition from psoriasis to psoriatic arthritis than in those who had a concomitant diagnosis.

“Whether this difference is secondary to earlier detection of psoriasis in patients with a family history of psoriasis and severe psoriasis or a true phenotypic difference will require further studies,” the researchers said.

Two further studies used ultrasound to look for early signs of damage that may herald psoriatic arthritis.

In one Sayam Dubash, M.D., and colleagues at the University of Leeds, Leeds Institute for Rheumatic and Musculoskeletal Medicine, NIHR Leeds Biomedical Research Centre and Leeds Teaching Hospitals Trust, in the United Kingdom used ultrasound to show that dactylitis was a clinical indicator for an aggressive phenotype in psoriatic arthritis.

Their study included 177 patients with very early DMARD naïve psoriatic arthritis, of which 81 had dactylitis. Patients with dactylitis recorded significantly higher median differences in tender joint counts (p< 0.01), swollen joint counts (p< 0.001), C-reactive protein (p< 0.01), ultrasound synovitis (p< 0.01), and ultrasound defined erosions (p< 0.01). The metacarpophalangeal 2 and 5 joints were most prone to erosive damage.

“Longitudinal follow-up will determine if dactylitis represents poor prognosis at this very early disease stage,” the researchers said. “Dactylitis may be a useful discriminator for risk stratification in future psoriatic arthritis management strategies.”

In the other Gizem Ayan, M.D., from the division of rheumatology at the University of Ottawa, Canada and colleagues assessed 46 joints and 12 large entheses in 126 patients and showed a link between severity of the joint and entheses involvement.

Greyscale (GS) synovitis score for the joints was moderately correlated with the total enthesitis score (r=0.410, p< 0.001), and the Global Outcome Measure in Rheumatology in Clinical Trials-European League Against Rheumatism Synovitis Score (GLOESS) score also correlated with the total enthesitis score (r=0.400, p< 0.001).

There was a poor correlation between ultrasound assessments and findings on clinical examination, including between swollen joint counts and joint-ultrasound scores (r=0.298, p=0.001 for GLOESS), and between ultrasound entheseal damage scores and tender joint counts (r=0.217, p= 0.018) and swollen joint counts (r=0.326, p= p< 0.001).

The researchers said that their findings support the synovio-entheseal complex theory - that damage to entheses may activate the innate immune system and stimulate rapid development of bursitis.

“Dactylitis Is Associated with Greater Disease Severity, Ultrasound Synovitis, and Erosive Damage, in Very Early DMARD Naïve Psoriatic Arthritis.”

 The annual meeting of the American College of Rheumatology. 9:00 AM, Friday, Nov. 6, 2020.

“The Link Between Joints and Entheses in Psoriatic Arthritis: An Ultrasound Study Supporting the Synovio-entheseal Complex Theory.”

“Delay in Transition from Psoriasis to Psoriatic Arthritis: A Population Based Study.”

 “Diagnostic Delay in Psoriatic Arthritis: A Population Based Study.”

“Longitudinal Analysis of the Patient Pathways to Diagnosis of Psoriatic Arthritis.

More than half of patients with psoriatic arthritis have to wait two or more years for a diagnosis, researchers report.









Early Diagnosis in Psoriatic Arthritis Is Often Missed

The burden and impact on quality of life of treatments for psoriatic arthritis and their failure to provide complete remission are not given enough attention by healthcare providers and greater use of patient reported outcomes measures could be used to highlight these issues and provide treatment targets, according to researchers reporting at the annual meeting of the American College of Rheumatology on Friday November 6.

Two studies presented by Alexis Ogdie-Beatty, M.D., MSCE, from the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, highlighted many of the ongoing issues faced by patients treated for psoriatic arthritis.

“Physicians often consider adverse events when choosing therapies for psoriatic arthritis and rheumatoid arthritis but may give less attention to other ways in which treatments affect the well-being of patients, such as impacts on quality of life, barriers to access, and challenges with taking medications,” she said.

Dr. Ogdie and colleagues looked at patients’ perspectives on the treatment burdens of the most commonly used therapies―methotrexate and TNF inhibitors―through interviews with 24 patients with rheumatoid arthritis and 25 patients with psoriatic arthritis. Nine types of treatment burdens were identified by the patients, who were aged 45-85 years and mostly female side effects, managing side effects, psychological, daily functioning, taking medications, accessing medications, economic impact, work, and family planning/breastfeeding.

RELATED: Long-Term Ixekizumab Versus Adalimumab in Psoriatic Arthritis

Fewer than half of patients reported seeking or receiving medical attention to address side effects, despite the majority of those on methotrexate having to take steps to manage nausea, fatigue, mouth sores, or hair loss which impacted on their quality of life, daily functioning and work. Three-quarters of patients taking TNF inhibitors experienced difficulties accessing, paying for, or taking them.

Discontinuing medication because of lack of effectiveness was more common among patients with psoriatic arthritis than those with rheumatoid arthritis.

It is common for patients with psoriatic arthritis in the United States to fail to achieve remission, and unacceptable symptom states are often accompanied by depression and impaired social interaction, showed another study presented by Dr. Ogdie, which was based on survey data from The National Psoriasis Foundation (NPF).

Data on 801 patients reporting a diagnosis of psoriatic arthritis from a healthcare provider and who had completed the Psoriatic Arthritis Impact of Disease 9 (PsAID-9) revealed that six in ten (59.6%) experienced an unacceptable level of disease activity (PSAID >4). Those with a significant level of unacceptable disease activity were significantly more likely than those with acceptable levels to report depression (2.56 [SD 2.00] vs 0.08 [SD 1.25], p≤.0010 and inability to participate in social activities (mean T-scores 44.56 [SD 6.83] vs 55.46 [SD 6.99], p≤.001).

Greater awareness of treatment burdens experienced by patients with psoriatic arthritis, which were rarely addressed in clinical trials or observational studies, might help healthcare providers better support patients with any medication-related challenges that they encountered, Dr. Ogdie said.

Several different composite instruments can be used to define low disease activity and remission targets for treatment in patients with psoriatic arthritis, but another study highlighted that many patient-reported outcomes (PROs) correlate well with these measures so could also be used.

Using composite indices as the reference standards, the research team which included Dr. Ogdie, compared the performance of various patient-reported outcomes measures, including Patient-Reported Outcomes Measurement Information System (PROMIS) instruments, EULAR Psoriatic Arthritis Impact of Disease (PSAID12), and Routine Assessment of Patient Index Data 3 (RAPID3), in 227 patients.

Compared to patients with low disease activity patients in remission had significantly more favorable PROMIS Physical, PROMIS Mental, PROMIS Fatigue, and PSAID12 scores, and correlations with the composite indices were strong for PROMIS GH physical health (r=0.65- 0.69) and PSAID12 (r=-0.77- 0.79).

Use of patient reported outcomes to measure low states of disease activity should be considered for additional treatment targets in psoriatic arthritis, said Juliette Yedimenko from the Cleveland Clinic, Cleveland, who presented the findings. “RAPID3 Near-Remission may be the most rigorous PRO criteria (including only the lowest states of disease activity), while PSAID Patient Acceptable State may identify a broader range of low states of disease activity,” she added.

“Perspectives on Treatment Burden for Methotrexate and TNF-inhibitors Among Psoriatic Arthritis and Rheumatoid Arthritis Patients: A Qualitative Study.” The annual meeting of the American College of Rheumatology. 9:00 AM, Friday, Nov. 6, 2020.

“Prevalence and Impact of Unacceptable Symptom State Among Patients with Psoriatic Arthritis: Results from the National Psoriasis Foundation’s 2019 Annual Survey.” The annual meeting of the American College of Rheumatology. 9:00 AM, Friday, Nov. 6, 2020.

 “Patient-Reported Outcomes Differentiate Between Remission and Low Disease Activity in Psoriatic Arthritis.” The annual meeting of the American College of Rheumatology. 9:00 AM, Friday, Nov. 6, 2020.

Many patients with psoriatic arthritis live with unacceptable levels of disease activity despite treatment, and patient-reported outcomes could provide useful treatment targets, shows a new study.

Fewer Than Half of Psoriatic Arthritis Patients Report Obvious Side Effects


Kathryn Johnson, RPh, serves as Director of Specialty Innovation and Product Development, CVS Health, Lincoln, Rhode Island.

In this video, Ms. Johnson provides an overview of a presentation she made at the American College of Rheumatology annual meeting: 

 "Medical Savings of Timely Rheumatoid Arthritis Diagnoses,"

 abstract number 0576,  Sat., Nov., 7, 2020.

"To stop or slow the progression, it is ideal if the rheumatoid arthritis or RA diagnosis occurs within six months of the appearance of symptoms. While previous studies suggest that RA recognition and treatment provides greater clinical benefits than treatments started later in the disease course, the impact of early treatment initiation on the total cost of care in RA patients has not been well studied.

The purpose of this study was to determine the medical cost savings of a timely RA diagnosis six months pre- and post diagnosis. We found that annual direct costs for RA patients are estimated to range from $12,509-$36,053. A late diagnosis―categorized as patients who are diagnosed in an emergency department or in patient setting―was associated with significantly higher total cost of care compared to a timely RA diagnosis. One in 10 new RA cases were categorized as late diagnosis and contributes to over $4,000 in medical spending per patient per year in commercial populations.

Prior to diagnosis in-patient visits drove an increase in cost of care per plan per member over six months. The total cost of care per member per year per new RA patients diagnosed in an emergency department, or in patient setting, was significantly higher than new RA patients diagnosed in other settings.

This research highlights gaps in total diagnosis of rheumatoid arthritis, which is one of the most common autoimmune diseases that could help address cost and patient outcomes.

Our research unearthed valuable insights about the financial implications of a timely RA diagnosis that can help encourage further research to identify patients at risk for rheumatoid arthritis and appropriate interventions that will help to further reduce avoidable healthcare costs.

Thank you for the opportunity to present today."


The annual direct costs for rheumatoid arthritis (RA) patients are estimated to range from $12,509-$36,053. A late diagnosis costs even more and one in 10 new RA cases are usually diagnosed late. In this presentation, Kathryn Johnson, RPh, of CVS Health breaks down the numbers.

Direct Costs to Patients for RA Treatment:  $12,509-$36,053 

Slideshows

In this slideshow, we take a look at some of our most popular stories on rheumatoid arthritis from thinking of the disease as two diseases instead of one, and new treatment approaches you may want to consider. 