Patient perceived needs and experiences of person-centered care in patients with inflammatory arthritis.

BACKGROUND: Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs). PURPOSE: The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands. METHODS: A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data. RESULTS: Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%). CONCLUSIONS: Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation. IMPLICATIONS FOR PRACTICE: Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs.

Fatigue in early, intensively treated and tight-controlled rheumatoid arthritis patients is frequent and persistent: a prospective study.

Fatigue has a large impact on quality of life and is still unmanageable for many patients. Study aims were describe (1) the prevalence and pattern of fatigue over time in patients with early rheumatoid arthritis under a treat-to-target strategy and (2) identify predictive factors for worsening and recovering of fatigue over time. Data from the tREACH study were used, comparing different treatment strategies with fatigue as secondary objective. Patient outcomes on fatigue, quality of life, depression, and coping were obtained every 6 months and clinically assessed every 3 months. Prediction of fatigue at 12 months was investigated with an ROC curve. Analysis was stratified into non-fatigue and fatigue at baseline. Logistic regression was used for the evolution of fatigue in relation with the covariates over time. Almost half of all patients (n = 246) had high fatigue levels at baseline, decreasing slightly over time. At 12 months, 43% of patients were fatigued; while 23% of the initially fatigued patients showed lower levels of fatigue, the fatigue level had increased in 15% of the initially non-fatigued patients. The strongest predictor of fatigue was the previous fatigue levels (AUC 0.89). Higher score on the depression scale and coping with limitations was associated with developing fatigue over time in the initially non-fatigued group. Despite a strict treat-to-target strategy, fatigue remained an overall problem during the first year of treatment, and was mainly predicted by its baseline status. In subgroups, a small additional effect of depression was seen. Monitoring fatigue and depression may be important in managing fatigue.

Focus group interviews reveal reasons for differences in the perception of disease activity in rheumatoid arthritis.

OBJECTIVE: Doctors frequently see patients who have difficulties coping with their disease and rate their disease activity high, despite the fact that according to the doctors, the disease activity is low. This study explored the patients' perspectives on this discordance that may help to understand why for some patients, usual care seems to be insufficient. METHODS: In our qualitative study we conducted focus group interviews where questions were used as a guideline. Transcripts were analyzed using inductive thematic analysis. FINDINGS: Twenty-nine patients participated in four focus groups. Participants could not put their finger exactly on why doctors estimated that their disease activity was low, while they experienced high levels of disease activity. During the in-depth focus interviews, seven themes emerged that appeared related to high experienced disease activity: (1) perceived stress, (2) balancing activities and rest, (3) medication intake, (4) social stress, (5) relationship with professionals, (6) comorbidity, and (7) physical fitness. CONCLUSION: When patients were asked why their view of their disease activity was different from that of their physician, seven themes emerged. The way participants coped with these themes seemed to be the predominant concept. Specific interventions that focus on one or more of the reported themes and on coping may improve not only the quality of life of these patients but also the satisfaction with the patient-doctor relationship for both parties.

Facilitators and barriers to adherence in the initiation phase of Disease-modifying Antirheumatic Drug (DMARD) use in patients with arthritis who recently started their first DMARD treatment.

OBJECTIVE: To explore themes associated with adherence in the initiation phase for first-time use of disease-modifying antirheumatic drugs (DMARD) in patients with inflammatory arthritis using focus groups and individual interviews. METHODS: Thirty-three patients were interviewed in focus groups and individual interviews. Interviews were transcribed verbatim and imported into ATLAS.ti software (Scientific Software Development GmbH). Responses that included reasons for adherence or nonadherence in the initiation phase were extracted and coded by 2 coders separately. The 2 coders conferred until consensus on the codes was achieved. Codes were classified into overarching themes. RESULTS: Five themes emerged: (1) symptom severity, (2) experiences with medication, (3) perceptions about medication and the illness, (4) information about medication, and (5) communication style and trust in the rheumatologist. CONCLUSION: Perceptions about medication and the communication style with, and trust in, the rheumatologist were mentioned the most in relation to starting DMARD. The rheumatologist plays a crucial role in influencing adherence behavior by addressing perceptions about medication, providing information, and establishing trust in the treatment plan.