Person-centered care in nurse-led outpatient rheumatology clinics. From experience to measurement.

AbstractAim: To describe and understand patients’ experiences as a means to conceptualize and evaluate outpatient person-centered care (PCC) in nurse-led rheumatoid arthritis (RA) clinics.Methods: Persons with RA were interviewed about how they experienced their nurse-led outpatient care and about the meaning of living with persistent RA. Interviews were analyzed by qualitative content analysis and hermeneuticphenomenology. Based on these results, existing PCC frameworks and hypothetical logical reasoning, a conceptual framework for nurse-led outpatient PCC was developed and used to operationalize a PCC instrument for outpatientcare in rheumatology (PCCoc/rheum). Acceptability and content validity of the PCCoc/rheum were evaluated, and its measurement properties were tested according to Rasch measurement theory (RMT).Results: The experience of nurse-led outpatient care was expressed as social environment, professional approach and value-adding measures, all relating to the degree of PCC. Living with persistent RA was revealed as an existence dominated by painful symptoms and treatment, radical changes and limitations in life, a continual struggle to cope with life and to master the illness, and a dependency on those who are close by and the world around. Results also pointed to the need for a stronger PCC approach. An outpatient framework was conceptualized with five related domains, and was used to develop the PCCoc/rheum, which showed good acceptability and contentvalidity. RMT supported the accordance between the PCCoc/rheum and the conceptual framework, and its measurement properties were generally supported.Conclusions: Experiences of persons with RA support a central role for PCC. The conceptual framework and the PCCoc/rheum have potentials to improve implementation and evaluation of outpatient PCC and contribute to qualityof care from a PCC perspective in nurse-led rheumatoid arthritis clinics

Self-reported outcomes during treatment with tumour necrosis factor alpha inhibitors in patients with rheumatoid arthritis.

To study how patients with rheumatoid arthritis (RA) self-report their experience of disease-related symptoms (fatigue, morning stiffness, pain) and their ability to cope with everyday life (capacity) using a nurse-led structured follow-up during the first year after starting treatment with tumour necrosis factor alpha (TNF-alpha) inhibitors

Measuring person-centred care in nurse-led outpatient rheumatology clinics

Background: Measurement of person-centred care (PCC) outcomes is underdeveloped owing to the complexity of the concept and lack of conceptual clarity. A framework conceptualizing outpatient PCC in rheumatology nurse-led clinics has therefore been suggested and operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum). Objective: The aim of the present study was to test the extent to which the PCCoc/rheum represents the underpinning conceptual outpatient PCC framework, and to assess its measurement properties as applied in nurse-led outpatient rheumatology clinics. Methods: The 24-item PCCoc/rheum was administered to 343 persons with rheumatoid arthritis from six nurse-led outpatient rheumatology clinics. Its measurement properties were tested by Rasch measurement theory. Results: Ninety-two per cent of individuals (n = 316) answered the PCCoc/rheum. Items successfully operationalized a quantitative continuum from lower to higher degrees of perceived PCC. Model fit was generally good, including lack of differential item functioning (DIF), and the PCCoc/rheum was able to separate individuals with a reliability of 0.88. The four response categories worked as intended, with the exception of one item. Item ordering provided general empirical support of a priori expectations, with the exception of three items that were omitted owing to multidimensionality, dysfunctional response categories and unexpected ordering. The 21-item PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories and no DIF, and its reliability was 0.86. Conclusion: We found general support for the appropriateness of the PCCoc/rheum as an outcome measure of patient-perceived PCC in nurse-led outpatient rheumatology clinics. While in need of further testing, the 21-item PCCoc/rheum has the potential to evaluate outpatient PCC from a patient perspective

Further development and evaluation of a questionnaire targeting person-centred outpatient care for persons with long-term conditions

Abstract Aim To further develop the Person-Centred Care instrument for outpatient care (PCCoc), evaluate its user-friendliness and content validity, and to explore its basic psychometric properties in various outpatient settings for adults with long-term conditions. Background Person-centred care (PCC) has been identified as a key factor to provide high-quality care. However, there is still a lack of instruments that are based on a clearly defined framework for PCC for persons with long-term conditions in an outpatient context. The PCCoc is a patient-reported experience measure under development aiming to fill this gap. Methods First, the 35-item PCCoc was reviewed and further developed in collaboration with a user-council. Second, the revised 36-item PCCoc was tested among persons receiving outpatient care for various long-term conditions. A total of 179 persons with long-term conditions from four different specialties participated in the study. User-friendliness and content validity were assessed through structured interviews and relevance ratings of each item. Content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI) were calculated, and basic psychometric properties of the PCCoc using classical test theory were explored. Results It took a median of 8 min for participants to complete the PCCoc. The majority found items easy to understand, response categories distinct and that no important areas were missing. Results from the CVI analyses suggested that participants found the content of the PCCoc relevant (I-CVI range 0.82-1, S-CVI = 0.95). All psychometric properties examined were satisfactory (e.g., item-total correlations, 0.45–0.75; Cronbach’s alpha, 0.96; test-retest stability, 0.83). Conclusion The PCCoc was considered user-friendly and relevant by the intended users, and its psychometric properties were satisfactory. This implies that the PCCoc can be a valuable instrument for evaluating and developing PCC in outpatient care for persons with long-term conditions. However, further studies of the PCCoc are needed to establish its measurement properties in various outpatient settings

Long-term sustained remission in a cohort study of patients with rheumatoid arthritis: choice of remission criteria.

Remission is a widely accepted goal for treatment of rheumatoid arthritis (RA) but has to be sustained to arrest joint damage and disability. However, appropriate criteria for the assessment of sustained remission in long-term studies are not established. Therefore, we have compared the disease activity score calculated on 28 joints (DAS28) remission criterion, the Simplified Disease Activity Index less than 3.3 remission criterion (SDAI Cr) and the new Boolean-based set of criteria (Boolean Cr), and assessed the association of these criteria with radiographic and functional outcome

Reported disability in relation to observed activity limitation, grip strength and physical function in women and men with rheumatoid arthritis

Background: The self-reported Health Assessment Questionnaire (HAQ) is specifically designed to assess disability in arthritic patients. In many studies women report higher functional disability than men. The reasons for this difference are suggested to be multifactorial. We therefore evaluated functional disability assessed by HAQ in women and men with rheumatoid arthritis (RA) in relation to observed disability, grip force and physical function. Methods: Patients with RA, 51 women and 49 men, completed the HAQ on three occasions, some weeks apart. Between HAQ1 and HAQ2, all patients performed 17 of the 20 activities (7 domains) included in the HAQ under observation in a specially designed environment, the observed HAQ. During the same day, grip force, measured by GRIPPIT and physical function assessed by the SOFI (Signals of Functional Impairment) index were evaluated. Differences between groups were studied by the chi-square test, Mann-Whitney U test and Wilcoxon Sign Rank test. Correlations were analysed by Spearman rank correlation. Comparisons between repeated measures were performed using Friedman’s test. Results: Median (IQR) total HAQ1 score was 0.50 (0.88) for women and 0.25 (0.84) for men, p = 0.038, and the observed HAQ score (7 domains) 0.57 (0.9) for women and 0.43 (0.96) for men, p = 0.292. The correlations between reported HAQ1 score (7 domains) and observed HAQ score were strong, r = 0.860, p < 0.001 in women, and r = 0.820, p < 0.001 in men. For some activities the patients, both women and men, reported lower difficulty than that observed. Women had lower grip force than men, median (IQR), right and left 126 (84) Newton, versus 238 (146), p < 0.001, and there was a negative correlation between grip force and most of the separate activities in HAQ in both genders. SOFI index was similar in women and men, median (IQR) 0 (3.0) versus 0 (2.0), p = 0.277, with a moderate correlation to HAQ. Conclusions: The results indicate that in well-treated patients with RA the correlations between reported and observed HAQ scores were strong, similarly in women and men. We found no evidence that the patient’s opinion was dependent on unawareness of her/his own ability

The Experience of Care at Nurse-Led Rheumatology Clinics.

OBJECTIVE: To describe how people with rheumatoid arthritis (RA) experience the care provided by Swedish nurse-led rheumatology outpatient clinics. METHODS: Eighteen adult people with a diagnosis of RA who had had at least three documented contact sessions with a nurse-led clinic were interviewed. The interviews were analysed with qualitative content analysis. RESULTS: Care was expressed in three categories: social environment, professional approach and value-adding measures. A social environment including a warm encounter, a familial atmosphere and pleasant premises was desired and contributed to a positive experience of care. The nurses' professional approach was experienced as empathy, knowledge and skill, as well as support. The care was described as person centred and competent, as it was based on the individual's unique experience of his/her disease and needs. The nurses' specialist knowledge of rheumatology and rheumatology care was highly valued. The offered care represented added value for the participants, instilling security, trust, hope and confidence. It was perceived as facilitating daily life and creating positive emotions. The nurse-led clinics were reported to be easily accessible and provided continuity of the care. These features were presented as fundamental guarantees for health care safety. CONCLUSION: The experiences emphasized the need for a holistic approach to care. In this process, the organization of care and the role and skills of the nurse should be focused on the individual's needs and perspectives. The social environment, professional approach and value-adding measures are particularly relevant for optimal care at nurse-led rheumatology outpatient clinics. Copyright © 2012 John Wiley & Sons, Ltd

Person-centred care in nurse-led outpatient rheumatology clinics : Conceptualization and initial development of a measurement instrument

Background: Person-centred care (PCC) is considered a key component of effective illness management and high-quality care. However, the PCC concept is underdeveloped in outpatient care. In rheumatology, PCC is considered an unmet need and its further development and evaluation is of high priority. The aim of the present study was to conceptualize and operationalize PCC, in order to develop an instrument for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. Methods: A conceptual outpatient PCC framework was developed, based on the experiences of people with rheumatoid arthritis (RA), person-centredness principles and existing PCC frameworks. The resulting framework was operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum), which was tested for acceptability and content validity among 50 individuals with RA attending a nurse-led outpatient clinic. Results: The conceptual framework focuses on the meeting between the person with RA and the nurse, and comprises five interrelated domains: social environment, personalization, shared decision-making, empowerment and communication. Operationalization of the domains into a pool of items generated a preliminary PCCoc/rheum version, which was completed in a mean (standard deviation) of 5.3 (2.5) min. Respondents found items easy to understand (77%) and relevant (93%). The Content Validity Index of the PCCoc/rheum was 0.94 (item level range, 0.87-1.0). About 80% of respondents considered some items redundant. Based on these results, the PCCoc/rheum was revised into a 24-item questionnaire. Conclusions: A conceptual outpatient PCC framework and a 24-item questionnaire intended to measure PCC in nurse-led outpatient rheumatology clinics were developed. The extent to which the questionnaire represents a measurement instrument remains to be tested