Table 1.
No. | Author | Year | Country | Study Design | Study Settings | Population | Intervention | PAM Level | Limitations with Regards to PAM | Conclusion | Quality AssessMent (Number and % out of 14 Checklist Items) |
---|---|---|---|---|---|---|---|---|---|---|---|
Interventional studies | |||||||||||
1 | Zuidema et al38 | 2019 | Netherlands | Randomized Control Trial | 2 Dutch hospitals | 157 patients with RA | Web-based self-management enhancing program | Control group mean 46.9 (±4.9), intervention 47.2 (±3.7) | PAM was reported as a continuous variable and was not computed to levels | No positive effects of the program were detected | 9 (64%) |
2 | Mollard et al39 | 2018 | US | Mixed methods | University hospital in Nebraska | 63 patients with RA | Live With Arthritis app | Intervention 67.4, control 71.9 | PAM was reported as a continuous variable and was not computed to levels | The PAM was negatively correlated with non-significant changes of HAQ-II (Pearson correlations: −0.33, p = 0.10) | 11 (79%) For qualitative part 3 (21%) |
3 | Van Den Bosch et al19 | 2017 | Europe, Israel, Mexico, Puerto Rico, and Australia | Observational study (cohort) | Australia, Belgium, Czech Republic, France, Germany, Greece, Israel, Mexico, Netherlands, Portugal, Puerto Rico, Slovakia, Switzerland, and the United Kingdom | 1025 patients with RA | Patient support programs (PSP) and instructions on how to use adalimumab | PSP users mean score 60.7 (±15.3), non-users 58.9 (±14.6) | Focusing on adalimumab treatment, PAM was reported as a continuous variable and was not computed to levels | The percentage of patients that demonstrated improvement in PAM-13 levels was significantly higher among PSP users vs PSP non-users (35.7 vs 28.1%, p = 0.01). Compared to PSP users, PSP non-users had a significantly higher percentage of patients that started at PAM-13 level 4 at baseline and remained at level 4 until week 78 of ADA treatment (64.5 vs 53.8%, p = 0.028). | 12 (86%) |
4 | Gronning et al42 | 2016 | Norway | Qualitative study within the published randomized control trial | University hospital | Adult RA patients last included in the randomized control trial | Nurse-led hospital-based patient education program | 26 (intervention 15, control 11) PAM of intervention group 73, of control group 70 |
A small group of which had RA | The experiences from the Patients in the nurse-led patient education program were in concordance with the pathway of self-efficacy and patient activation, which many patient education programs are based on | 10 (71%) |
5 | Joplin et al40 | 2014 | Australia | Cohort | Mid-North Coast Arthritis Clinic (MNCAC), a community-based rheumatology practice in Coffs Harbour | 18 patients with RA | Joint ultrasound | 60.0 (±15.5) at baseline | Very small sample size, PAM was reported as a continuous variable and was not computed to levels | PAM-13 scores did not change during the The study, with levels of activation at T1, T2, and T3 of 60.0 (±15.5), 55.7 (±12.0) and 57.8 (±14.8) (p = 0.21), respectively. |
7 (50%) |
6–8 | Gronning et al41,49 follow-up study after 5 years50 | 2012 2013, 2019 |
Norway | Randomized control trial | University hospital | 141 of which a group of patients had RA 101 follow-up 63 of which had RA |
Nurse-led hospital-based patient education program | Reports of the first study include intervention PAM 65.7 (±13.3), control PAM 65.6 (±16.4) | Not all patients had RA, the exact number of RA patients was not mentioned, PAM was reported as a continuous variable and was not computed to levels | Reported results at 4 and 12 months, then 5 years follow-up. A significant improvement of PAM scores among women with intervention at 12 months, mean change 4.2 (0.0, 8.3, p = 0.048). |
11 (79%) |
9 | Sandhu et al43 | 2012 | Canada | Qualitative Pilot before and after study |
Patients were recruited either from the primary care clinic in Toronto or via email sent from the Arthritis Society in Canada | Mentors: Adult patients with IA for more than 2 years and receiving drug therapy Mentees: adult patients with early IA |
In the mentor training program, the mentee was assessed before and after pairing with a mentor | 17 (9 mentors, 8 mentees PAM of mentees mean 75.80 (SD 73.11) p= 11.75 effect size 0.22 |
A very small number of patients as it is mainly qualitative and IA was not clear if it was RA or not | No difference between groups with regards to PAM level | 10 (71%) |
Non-interventional studies | |||||||||||
10 | Jones et al32 | 2021 | UK | Qualitative Semi‐structured interviews at two timepoints | Patient were recruited from two rheumatology departments in south west England | 17 participants total, 13 of which had RA | None | Participants demonstrated high levels of patient activation Four were at level 2, four at level 3 and six at level 4 |
Did not mention the exact level and RA patient were not assessed separately | Patients’ perceptions and experiences of patient activation covered are not always captured by the PAM | 14 (100%) |
11 | Huang et al33 | 2021 | Singapore | Cross-sectional | Specialist outpatient clinics of a tertiary hospital in Singapore |
200 participants with chronic conditions 56 of which had other chronic conditions including RA | None | The mean activation score was 58.8 (SD = 15.0) | Small number of participants and RA patient were not assessed separately | Some factors as age, income, education and health literacy are factors contributing to change in patient activation | 9 (64%) |
12 | Zakeri et al35 | 2021 | Iran | Cross-sectional | Chronic patients admitted to the Cardiac Care Unit and medical wards in Ali Ibn Abitaleb Hospital of Rafsanjan |
293 patients with chronic conditions 33 had other conditions including RA | None | The mean score of PAM-13 was 56:99 ± 15:32 | Small number of participants and RA patient were not assessed separately |
The physical and psychological subscales of Quality Of Life (QOL) significantly predicted the levels of PAM | 9 (64%) |
13 | Kosar et al30 | 2019 | Turkey | Cross-sectional | University Hospital in Izmer | 130 a group of which had RA | None | PAM scores of the patients ranged from 28.8% to 83.3%. Up to 28.7% of patients were in activation level 1, 44.9% were in activation level 2, 20.2% were in activation level 3 and 6.2% were in activation level 4. |
130 patients of which patients with RA, did not mention the exact number | Validity study of PAM-13 in Turkish | 9 (64%) |
14 | McBain et al31 | 2018 | UK | Cross-sectional | National Rheumatoid Arthritis Society, UK | 841 (95%) had RA | None | PAM was 57.8 (±15.5). The samples were evenly split across the 4 levels of activation, 251 (28.4%) level 1, 182 (20.6%) at level 2, 204 (23.1%) at level 3 and 248 (28.0%) at level 4. | Not all patients had RA | Only a small proportion of patients attended a self-management structure support program. | 8 (57%) |
15 | Lofland et al37 | 2017 | US | Cross-sectional survey and cost cohort | Claims database | Adult patients receiving biologics | None | 453 responders to the cross-sectional survey to assess shared decision making. PAM scores SDM vs non-SDM: 66.9 vs 61.6; P<0.001 |
RA patients were combined with PsA patients | Patient with SDM had a significantly greater PAM score | 11 (79%) |
16 | Graffigna et al34 | 2017 | Italy | Cross-sectional | Online panel provided by Research Now (secondary database) | Patients over 18 years of age and with chronic conditions | None | 352 (11.1%) had RA meaning 39 patients Mean PAM of all patients was 65.3 (range 0–100) |
Reported PAM was for the entire population and limited number with RA | Mean PAM of all patients was 65.3 (range 0−100) | 10 (71%) |
17 | Blakemore et al13 | 2016 | UK | Cohort | Cohort study database | Patients ≥ 65 years having at least one long-term condition | None | 3390 PAM at baseline 60.8 (SD 15.4), at follow-up 60.3 (SD 20.0), no difference |
Patients with RA were combined with all other illnesses and not clear as a separate group | No difference at baseline compared to follow-up with regards to PAM level | 11 (79%) |
18 | Jones et al51 | 2021 | UK | Cross-sectional | Six rheumatology clinics in England | Patients> 18 with an inflammatory rheumatic condition including RA, PsA and AS or SLE | None | 166 (66%) patients had RA, PAM was 58.3 (SD 11.5) | Patients with RA were combined with all other illnesses and not clear as a separate group | Self-efficacy and health literacy are targets for patient activation interventions | 9 (64%) |
19 | Oliveria et al36 | 2021 | Brazil | Cross-sectional | Rheumatology outpatient facility at a high-complexity teaching hospital in Brazil | 179 patients> 18 years with RA, having at least one year of formal education and being able to read and not having neurological or psychiatric disorders that affect cognition, and having enough visual acuity to read. | None | The average PAM-13 was 65.72, with 10.1% very low activation level, 15.6% having a low activation level, 39.1% moderate activation level and 35.2% having a high activation level. | None | Activation and health literacy are very important in RA patients and improving them could increase functional capacity | 8 (57%) |