Any good team should have a shared understanding. But, treatment teams & patients often have different lupus concerns.
It’s frustrating to not be “on the same page” with friends. It’s scary and isolating to have that same feeling with your rheumatologist & lupus treatment team.
Unfortunately, this disconnect exists for people battling lupus, according to a study published in Lupus in January 2017. Researchers interviewed both patients and their physicians to determine the lupus concerns for each group.
Lupus concerns study overview
All patients in the lupus concerns study had systemic lupus erythematosus (SLE). 84 patients and 21 physicians participated in the trial. Both groups completed a survey about lupus symptoms and quality of life. The survey was made of up questions ranked on a 5-point, Likert scale.
Two major lupus concerns emerged for patients:
- function (living with lupus)
However, the main health concern for physicians regarding their patients was organ complications.
The top 10 physician lupus concerns were “ranked significantly lower by patients.” Physicians rated seven of the patient top 10 significantly differently.
In addition to the scale information, the physicians also reported how often they routinely assessed the top patient concerns. The top 3 lupus concerns as ranked by patients were:
- Fatigue (routinely assessed by 47.6% of physicians)
- Pain (routinely assessed by 42.9% of physicians)
- Feeling worn out (routinely assessed by 9.5% of physicians)
The researchers concluded that there was a serious discordance between patients and physicians regarding health concerns and communication.
Lupus personal perspectives
This finding is not atypical when compared to previous patient interviews, LupusCorner surveys, and lupus forum data.
A study published in 2005 relied on semistructured interviews of 10 women with lupus. The interviews revealed 4 main challenges for people with lupus:
- Getting a diagnosis
- “Concern to feel legitimately ill and have a label for the condition”
- Understanding about both lupus and lifestyle challenges
- Participants reported encountering healthcare professionals who were “poorly informed about SLE”
- “Family, friends, and employers did not understand the fluctuating nature of SLE, which often led to isolation”
- Integrated health care
One statement in particular may shed light on the divergence in lupus concerns between patients and physicians. Participants reported that physicians didn’t fully understand the psychosocial (both psychological challenges and social challenges) of battling lupus. Because of this, physicians were not able to meet patients’ needs.
LupusCorner has also explored the disconnect between patients and doctors. Over 1,300 Lupus Warriors have shared their experiences. If you want to participate, press the button below to take the 2 minute survey.
LupusCorner survey findings
In the above survey, participants were asked to rank the following statement from 0 to 10.
0 = Strongly Disagree
10 = Strongly Agree
My current healthcare providers (doctors, nurses, hospitals) can do more to help me in my battle against lupus
In total, 1,282 people have answered that question.
26% of people (333 responses) reported a 5. 5 was neutral.
15% of people (187 responses) reported a 10, strongly agree. There are a large number of people with lupus that are not receiving the support they need from the health system.