In a prospective study of patients with early rheumatoid arthritis (ERA), researchers from Leuven, Belgium found that returning to normality was at the core of patients’ preferred outcomes. This desire to return to normalcy included physical, mental, and participatory aspects, with nuanced changes as interviews progressed, but with pain management remaining prominent. These findings were recently published in Arthritis Care & Research.1

While these findings echo previous research conducted on preferred outcomes in ERA, this study was the first to explicitly look at the early disease period and to revisit the same study participant at several time points, allowing for longitudinal analysis of patient-preferred outcomes as RA disease progresses.

In this longitudinal, qualitative, explorative study, researchers interviewed 26 patients with ERA 4 to 6 months after they began targeted treatment.


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Two interviews were conducted for every patient who was willing to participate in both. The first was an individual interview, the second was a focus group.

Fourteen of the participants took part in 1 out of the 3 focus groups at least 1 year after treatment began. Interviews were audio taped, transcribed, and analyzed using the constant comparison method.

A summary of the findings is presented below. (Table 1)

Table 1. Characteristics and Patient-Preferred Health Outcomes Valued by Patients

Characteristic Interview 1 Interview 2
Returning to Normalcy
  • Wanted to regain former health
  • Did not want to be constantly aware of RA
  • More subtle and nuanced in wanting normalcy, using phrases like “remaining bodily well” and “controlling my RA”
Proof of Disease Control
  • Expressed a need for visual feedback of test results
  • Wanted to see that more medication had a clear positive effect
  • Still wanted to see this proof, but less strongly
Less Medication
  • Feared side effects of medication use
  • Struggled with necessity of medication after previously being “healthy”
  • Less medication use was viewed as a sign of improvement
  • While medication use was still viewed as unpleasant, participants perceived it as more necessary for disease control
  • Less medication still preferred due to concerns about side effects
Pain Relief
  • A major outcome preferrence
  • Preferred immediate pain relief
  • Fear of intense pain during flares remained
Improved Joint Function and Mobility
  • Participants preferred being able to do basic household functions themselves
  • More focused on social participation except in cases of “setbacks,” during which they focused on regaining basic physical function
Side Effects
  • Side effects were a main concern because they affected normalcy or created feelings of frustration or shame
  • Still a concern, but were more accepted
Improved Sleep
  • Was of concern to those who feared pain would interfere with sleep
  • Was still of concern to those who feared pain would interfere with sleep
  • A reason why pain relief was a highly prioritized desire at interview 2
Tasks of Daily Living
  • Focused on doing everyday activities normally
  • Loss of autonomy was very frustrating
  • More acceptance of an altered ability to perform tasks, but the goal remained to regain normal participation
Engaging in Work or Leisure
  • Expressed importance of being active again, remaining social, and continuing work and hobbies
  • Work became less important to those experiencing continued disease impact
Fulfilling Family, Social, and Societal Roles
  • Participants wanted to remain in their normal roles
  • A key concern was keeping up with relatives
  • These concerns, for the most part, remained
Vitality
  • Participants wanted more physical energy and mental drive
  • Some discussed vitality and fatigue together
  • Vitality was not specifically discussed in the focus groups
Emotional Well-Being
  • Diagnosis left participants shocked an uncertain about what to expect from having “rheumatism”
  • Hope that treatment would have a lasting effect remained strong
  • Pain, disease progression, and lack of movement led to doubts and mental distress
  • Regaining emotional well-being was important for themselves and for reassuring significant others
  • Pain, disease progression, and lack of movement led to doubts and mental distress
Self And Identity
  • Having to rely on others and failing at simple tasks affected self-esteem
  • Referred to pre-RA identity in comparison; longed for normalized sense of self
  • Having to rely on others and failing at simple tasks affected self-esteem
  • Referred to pre-RA identity in comparison; longed for normalized sense of self
Enjoying Life
  • Life enjoyment was altered by disease concerns
  • Seemed to enjoy daily life more again despite RA
Not Feeling Ill
  • Participants did not want to feel ill, feel patronized, or treated like a sick person
  • For those who felt well again, taking medication felt like a daily confrontation with RA

For the first time to the researchers’ knowledge, health and treatment outcome preferences of patients with early rheumatoid arthritis were prospectively determined.

While previous studies found similar results — that achieving “normality” was a major goal of participants — these studies interviewed participants in different contexts. The current study is unique in its prospective design.

“Our study showed shifting outcome preferences in the early stages after RA diagnosis and treatment initiation, with normality as an overarching theme,” the authors noted.

Summary & Clinical Applicability

Patients with early rheumatoid arthritis tended to initially discuss returning to normality as soon as possible, and therefore preferred rapid improvements, especially in pain. Improvements in pain helped to provide hope.

These findings, along with previous findings that quick diagnosis and effective treatment led patients to feel like they had regained normal life, suggest that quick action is paramount, and that there may be a new opportunity for preventing progression of symptoms.

“Health care professionals should endeavor to meet patients’ initial normality construct in all its aspects, to help them adjust to RA in a healthy way, and to intervene before illness-as-burden beliefs get rooted. Nurses can be seen as pivotal in providing such necessary psychosocial care,” the authors noted.

The researchers concluded that in early rheumatoid arthritis, clinicians should:

  • include normality in their conversations
  • explore what normality means to each patient
  • discuss management of potential threats to normality

“Moreover, this study showed us that newly diagnosed patients with RA prefer a rapid and prolonged treatment response, preferably without side effects and without long term medication use,” the authors wrote.

Limitations & Disclosures

  • Not all participants were willing to participate in the focus groups. The authors noted that they may have been more willing to participate if they had not been invited immediately after their individual interview.
  • Participants who declined participation in the focus groups were not invited to an alternative second individual interview; therefore, possible selection bias in the group interviews was not accounted for. However, the authors noted that age, sex, and treatment progress were comparable between those who participated in the focus groups and those who did not.
  • Differing methods of conducting the interviews could have influenced change over time.
  • Patient priorities in the treatment of RA need further study with tools such as questionnaires.
  • Participants were not interviewed when their treatment began because of their lack of knowledge early on.

The authors report no disclosures.

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