Prioritizing the patient: optimizing therapy in rheumatoid arthritis. Results of a patient questionnaire in northern Germany

Abstract

PurposeA 40-question postal survey was developed to gain insight into the nature of difficulties experienced by patients due to rheumatoid arthritis (RA), as well as patient perceptions and priorities regarding their RA treatmentPatients and methodsA total of 3000 Lower Saxony, Germany members of Rheuma-Liga (RL), a patient support group for people with RA, were invited to participate between July 1, and August 20, 2009. The questionnaire was divided into four sections: (1) patient demographics, (2) quality of life (QOL), (3) treatment expectations and, (4) patient perceptions of RL. The questionnaire could be completed in writing or via the internet.ResultsOf 959 respondents (response rate = 32.0%), 318 had diagnosed RA and were included in the analysis. The respondents were mostly retired (71.2%), female (83.3%), and >60 years of age (63.5%). Members’ responses indicated that most were generally satisfied with their current treatment (67.3%), considered it efficacious (84.0%), and reported minimal (none or little) side-effects (61.2%). Patient involvement in treatment decisions, however, was reportedly low (49.6% felt insufficiently involved). Patients’ primary impairments were reflected in their treatment priorities: mobility (97.0%), ability to run errands/do shopping (97.1%), do the housework (95.6%), and be independent of others (94.2%). The primary service provided by RL and used by respondents was physiotherapy (70.6%), which was reported to benefit physical function and mood by over 90.0% of respondents.ConclusionRA had a detrimental effect upon respondents’ quality of life, specifically impairing their ability to perform daily tasks and causing pain/emotional distress. Independence and mobility were strong priorities for respondents. Physical therapy, provided by RL, was felt to help both physical and mental/emotional health.

Person-centred care in osteoarthritis and inflammatory arthritis: a scoping review of people’s needs outside of healthcare

“…Twenty studies discussed non-healthcare needs for IA [ 31 , 33 – 51 ]. All but one study included predominantly female participants (58–100%) [ 41 ], with all studies from high-income countries.…”

“…All but one study included predominantly female participants (58–100%) [ 41 ], with all studies from high-income countries. Included participants were generally over 50 years of age [ 31 , 33 – 40 , 42 – 45 , 48 , 49 , 51 ], although in four studies mean age was in the 40s [ 41 , 46 , 47 , 50 ]. IA was usually diagnosed clinically [ 31 , 33 , 35 – 37 , 39 , 40 , 42 – 50 ].…”

“…IA was usually diagnosed clinically [ 31 , 33 , 35 – 37 , 39 , 40 , 42 – 50 ]. RA was the most common diagnosis [ 34 , 35 , 37 – 40 , 42 – 48 , 50 , 51 ] [ 33 , 49 ], with participants usually recruited from outpatient clinics [ 31 , 35 , 36 , 38 , 40 , 41 , 43 – 45 , 48 – 50 ]. Nine quantitative studies used questionnaires [ 31 , 33 , 37 , 38 , 40 , 44 , 46 , 47 , 51 ], while 11 qualitative studies used interviews [ 34 – 36 , 39 , 41 , 42 , 45 , 48 – 50 ] or focus groups [ 43 ].…”

“…RA was the most common diagnosis [ 34 , 35 , 37 – 40 , 42 – 48 , 50 , 51 ] [ 33 , 49 ], with participants usually recruited from outpatient clinics [ 31 , 35 , 36 , 38 , 40 , 41 , 43 – 45 , 48 – 50 ]. Nine quantitative studies used questionnaires [ 31 , 33 , 37 , 38 , 40 , 44 , 46 , 47 , 51 ], while 11 qualitative studies used interviews [ 34 – 36 , 39 , 41 , 42 , 45 , 48 – 50 ] or focus groups [ 43 ]. Of the qualitative studies, six were assessed as low risk of bias [ 34 , 42 , 45 , 48 – 50 ] and five at moderate risk of bias [ 35 , 36 , 39 , 41 , 43 ] (Supplementary Material Table S1 ).…”

“…Of the qualitative studies, six were assessed as low risk of bias [ 34 , 42 , 45 , 48 – 50 ] and five at moderate risk of bias [ 35 , 36 , 39 , 41 , 43 ] (Supplementary Material Table S1 ). Of the quantitative studies, one was assessed as low risk of bias [ 38 ], two at moderate risk of bias [ 44 , 46 ] and six at high risk of bias [ 31 , 33 , 37 , 40 , 47 , 51 ] (Supplementary Material Table S2 ).…”