Amar Majjhoo, MD, discusses what the US findings from the Psoriatic Arthritis (PsA) Narrative Global Patient Survey mean for clinicians and how they can be used to improve interactions with patients.
Preliminary US findings from the Psoriatic Arthritis (PsA) Global Patient Narrative Survey,1 sponsored by Pfizer, showed that 98% of responders with PsA still experience symptoms despite treatment.
“This is a very interesting finding and is kind of a hard pill for physicians to swallow,” said Amar Majjhoo, MD, a rheumatologist at Shores Rheumatology in Michigan, president of the Michigan Rheumatism Society.
Dr Majjhoo is a member of the PsA Narrative Global Advisory Commitee, a global initiative created by Pfizer to engage the PsA community to help identify how people living with PsA are impacted by the disease. The US patient survey findings represent a subset of the PsA Narrative global survey, which was developed with input from the PsA Narrative Global Advisory Committee. The PsA Narrative Global Advisory Committee is comprised of individuals living with PsA, dermatologists, rheumatologists, and patient organizations from 8 countries who contributed to the design of the survey.
“We want our patients to be doing the best that they can, and it is disappointing to find out they are not and even more disappointing to find out they are not reporting these symptoms,” he said.
Findings from the survey shed light on some of the communication issues between patients and physicians, according to Dr Majjhoo. This could be a starting point for determining what can be done to better serve these patients.
The PsA Narrative Survey
The online survey was conducted between November and December 2017 by The Harris Poll with input from the PsA Narrative Global Advisory Committee.
The survey was completed by 301 adults who reported they received a diagnosis of PsA by a health care provider, had disease duration for more than a year, had seen a rheumatologist or dermatologist within the past 12 months, and were prescribed a disease-modifying antirheumatic drug or biologic. The data were not weighted and are only representative of those who completed the survey.
Overall, 98% of survey participants experienced musculoskeletal symptoms in the past 12 months and 3 of 4 participants considered these symptoms to be the most bothersome. The most commonly reported symptoms were joint pain (86%), stiffness (75%), joint tenderness (70%), and joint swelling (70%).
In addition, 277 of 301 participants reported that PsA negatively impacted their emotional and mental well-being. Three of 4 participants reported that PsA negatively affected their career path and 3 of 4 participants said that PsA negatively impacted their relationships with family and friends. Cessation of sports and recreational activities was reported by 58% of participants and 51% reported no longer participating in social activities.
Despite participants reporting continued symptoms and reduced quality of life, 83% reported that they were very or somewhat satisfied with their regimen and 87% reported that their PsA was under control on their current medication regimen. Of participants who were satisfied with their regimen, 96% reported still experiencing PsA symptoms despite treatment, 89% still described their PsA as moderate to severe, and 90% of responders said they would like to have changes to their regimen made.
Among participants who reported that a rheumatologist was responsible for managing their PsA symptoms, 93% reported they were somewhat or very satisfied with their communication with their rheumatologist and 93% reported they felt comfortable raising fears and concerns (Figure 1).
Figure 1. The infographic highlights the prevalence of joint stiffness in patients receiving treatment for psoriatic arthritis.
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Nevertheless, some patients reported concerns that if they asked too many questions then they would be seen as a difficult patient and worried this would impact their quality of care. These responders reported that they often told their rheumatologist they were fine when they were actually experiencing PsA symptoms (Figure 2).
Figure 2. The infographics shows that some patients still avoid discussing all of their symptoms with their providers despite stating that they feel comfortable discussing their concerns. Images courtesy—Pfizer
Strategies for Closing the Gap
In the Office
“We have to make our patients feel that they are not rushed and make them feel comfortable about opening up to whoever is providing the care,” said Dr Majjhoo. He noted some of the communication issues highlighted in the survey may be inherent to changes within the medical field, such as the use of electronic medical records (EMR) and tight schedules. “I think with the paradigm shift, we need to be better at doing what we are doing in this new setting of EMR and electronic information,” said Dr Majjhoo. “A part of that is letting patients be comfortable about their time with the physician.”
He recommends making eye contact with patients and encouraging discussion by not being distracted by the computer screen and not appearing like you are in a hurry, as well as starting with open-ended questions before narrowing down to more specific questions.
To bridge the gap between patient-doctor communication in his own practice, Dr Majjhoo said he asks his patients to keep diaries and notes between office visits. “A lot of patients are rushed, and they forget to mention symptoms they have experienced. It helps to bring a family member with them, such as a spouse or parent, to help facilitate discussion of what they are seeing on their end.”
If a companion cannot make the appointment, Dr Majjhoo recommends having them call in on speaker phone, so they can still be a part of the discussion.
“I have patients fill out assessment surveys and a lot of doctors are doing that also,” he said. While a patient waits they can fill out assessments of how they are doing overall to help them start to think about their symptoms and to try and translate how they are affecting them globally. “Physicians can use these assessments and gauge whether there is a gap between asking a patient ‘hey how are you doing’ and them responding, ‘I am fine’ or ‘I am great,’ but wait a second you reported your pain was a 10 out of 10 when you visited last week. There is something wrong here,” he said.
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Effective communication starts with the staff members the patients interact with when they enter the office, said Dr Majjhoo. “For example, when the medical assistant is taking the patient to a room, they can start asking questions to help the patient get their memories going and maybe encourage them by saying ‘make sure to tell that to the doctor.’ They can also start to take notes,” he said, noting that having all staff involved in the care of the patient can make the patient feel more comfortable.
“A heightened elevation of these issues on both sides and more interest in disseminating this information will make the PsA Narrative Global Survey initiatives more fruitful,” said Dr Majjhoo. “The whole idea is to elevate awareness of the symptoms that patients with PsA are living with and to try and close the gaps of how we can do better.”
On the health care side, the gap will improve with physicians who care about this information and take it back to their practices, said Dr Majjhoo, and as societies and organizations, such as the American College of Rheumatology, develop best practices for how to include this kind of dialogue. “As the findings from the survey are more widely reported and presented at large forums, such as academic meetings,” he added, “then more people will start to think about what can be implemented to make improvements in this process.”
Awareness among patients is also necessary to help bridge this gap, which can be addressed through patient advocacy groups and by patients themselves getting involved with their treatment. “When people visit the website (https://www.pfizer.com/news/press-kits/psa-narrative) and patient advocacy groups distribute this information to patients that say, ‘hey you really need to speak up and let your doctor know how you are doing.’ As well as, when family members see this information, they will, hopefully, encourage their loved ones to be more open about what they are actually experiencing,” Dr Majjhoo said.
By raising awareness through various channels on the patient side, patients will hopefully engage in and be involved more with their treatment, which will better help physicians serve them.
“It is an evolving process, and someone might have a better answer tomorrow, but I think awareness of this information and decisions on both sides of treatment will help fill the gaps in communication between doctors and patients,” said Dr Majjhoo.
1. Psoriatic Arthritis (PsA) Narrative Survey. https://www.pfizer.com/news/press-kits/psa-narrative. Accessed June 26, 2018.