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Background: Increasing pressure on the healthcare services, limited resources, as well as more patients achieving remission in the biological era have led to an increasing awareness of how the follow up of patients with inflammatory joint disease is best managed [1]. Patient initiated follow-up (PIFU) is gradually being implemented in several departments, but there is still uncertainty about how best to balance the need for monitoring with patient autonomy [2]. In 2013, the department of rheumatology at St. Olavs hospital started a PIFU program for adult patients (>25 years) who were in remission or had low disease activity on treatment with disease modifying anti-rheumatic drugs (DMARDs). A small study from 2017 including 312 patients showed that patients were satisfied with PIFU [3].
Objectives: To investigate satisfaction among patients who have participated in PIFU for more than one year. Furthermore, to see if there were any differences in satisfaction with regard to age, sex, diagnosis, disease duration, time included in PIFU or disease duration before being included in PIFU.
Methods: All PIFU patients who had contacted the department within the last two years were sent a questionnaire that included seven satisfaction questions, graded as follows: 1- Not (satisfied) at all; 2- To a small extent; 3- To some extent; 4- To a large extent; 5- To a very large extent; 6- Not relevant (Table 2). The survey was distributed digitally via a national online health service4, and by mail to those without digital access (N=56). The following data was retrieved from the patient record; age, sex, diagnosis, time of diagnosis, time included in PIFU and disease duration before being included in PIFU. Statistics: Group comparison using non-parametric tests (Mann-Whitney U and Kruskal-Wallis).
Results: Out of 1,495 who received a questionnaire, 1,010 (67.6%), responded. 146 had been in PIFU for less than a year and were excluded, leaving 864 included (Table 1). The following diagnosis were included: Psoriatic arthritis: 250 (28,9%), Seropositive RA: 229 (26,5%), Ankylosing spondylitis: 99 (11,5%), Spondyloarthritis: 75 (8,7%), Unspecified arthritis: 75 (8,7%), Seronegative RA: 48 (5,6%), JIA: 37 (4,3%), Non-radiographic SpA/sacroiliitis: 25 (2,9%), IBD-related arthritis: 22 (2,5%), Other: 4 (0,5%.). Patients reported good satisfaction with all parameters (Table 2). They were particularly satisfied with prescription renewal and medication information. 67, 1% would to a large or very large extend recommend this kind of follow up to others. There were no significant differences in satisfaction with regard to age, sex, diagnosis, disease duration, time included in PIFU, or time in regular follow up before included in PIFU.
Baseline characteristics
| n = 864 | |
|---|---|
| Age (years), mean (SD) | 57,6 (13,4) |
| Female sex. N (%) | 509 (58,9) |
| Disease duration (years), median (25-75 p) | 12,1 (7-19,6) |
| Follow- up in PIFU (years), mean (SD) | 6,2 (3,4) |
| Disease duration prior to inclusion (years), median (25-75 p) | 5 (2,3-11,2) |
| Diagnosis, N (%) | |
| -Rheumatoid Arthritis | 277 (32,1) |
| -Psoriatic arthritis | 250 (28,9) |
| -Spondylarthritis | 221 (25,6) |
| -Unspecified polyarthritis | 75 (8,7) |
| -Juvenil idiopathic arthritis | 37 (4,3) |
| -Other | 4 (0,5) |
Questionnaire and results
| Mean (SD) | Median | Not relevant | |
|---|---|---|---|
| Do you have sufficient knowledge to take responsibility and carry out the routine blood test controls? | 3,92 (1,01) | 4 | 1% |
| Do you have sufficient knowledge and confidence to take your medication as prescribed? | 4,22 (0,83) | 4 | 1% |
| Do the renewal of medication prescriptions through phone/online work okay? | 4,07 (0,96) | 4 | 9% |
| Do you get in contact with the Health professionals at the Rheumatology department when you need to? | 3,76 (0,98) | 4 | 5% |
| Do you get an outpatient appointment with a rheumatologist when you need one? | 3,86 (0,94) | 4 | 12% |
| Would you recommend PIFU to other patients? | 3,85 (1,02) | 4 | 3% |
Conclusion: Our patients with inflammatory joint disease were satisfied with PIFU. We found no difference in satisfaction with respect to age, sex, diagnosis, disease duration, time included in PIFU or time in regular follow-up before PIFU.
REFERENCES: [1] Alveyn et al “Patient-Initiated Follow-Up”, The Journal of Rheumatology June 2024, 51 (6) 547.
[2] Subdar et al. “Investigating the Influence of Patient Eligibility Characteristics on the Number of Deferrable Rheumatologist Visits: Planning for a Patient-Initiated Follow-Up Strategy”, The Journal of Rheumatology June 2024, 51 (6) 587.
[3] Grønning et al., EULAR abstracts 2017 (THU0765-HPR).
[4] Norsk helsenett. About Helsenorge. [Internet]. Oslo: The Norwegian Directorate of Health; updated Friday, May 12, 2023 [retrieved Sunday, January 12, 2025]. Available from:
Acknowledgements: We would like to thank the local Rheumatology fund for financing the project.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (