Evaluating person-centered care in neurological outpatient care: a mixed-methods content validity study.

BACKGROUND: Person-centered care (PCC) is gaining increased attention. PCC concerns the whole person behind the disease and can improve care for people with long-term conditions such as multiple sclerosis (MS) and Parkinson's disease (PD). However, there is a lack of tools to assess PCC from the patients' perspective, particularly in outpatient care. The Person-Centered Care instrument for outpatient care (PCCoc) is an instrument under development with the intention to fill this gap. The aim of this study was to test the user-friendliness and content validity of the PCCoc as experienced by persons with MS and PD in neurological outpatient care. METHODS: Twenty persons with MS or PD completed the 35-item PCCoc followed by an interview regarding the instrument's intelligibility and ease of use to assess its user-friendliness. Participants then rated the relevance of each item. These ratings were used to calculate the content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI). RESULTS: It took a median of 5 min for participants to complete the PCCoc. Instrument instructions were found clear, items easy to understand, and response categories distinct. No important missing areas were reported. I-CVI values ranged between 0.75 and 1, and S-CVI was 0.96. CONCLUSIONS: We found support for the user-friendliness and content validity of the PCCoc among persons with MS and PD, suggesting that the PCCoc can be useful for evaluating and developing PCC in neurological outpatient care. Further testing in broader contexts, including psychometric testing, is warranted to establish its usefulness.

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

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.

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.

A Swedish register-based, long-term inception cohort study of patients with rheumatoid arthritis - results of clinical relevance.

PURPOSE: At the end of the twentieth century, the outcome of rheumatoid arthritis (RA) was shown to be unsatisfactory and new therapeutic strategies were introduced. This initiated a register-based long-term study of early RA, the Better Anti-Rheumatic PharmacOTherapy (BARFOT) study. The aims were to evaluate the disease course and to acquire knowledge for improved care. PATIENTS AND METHODS: BARFOT is a multicentre observational study of patients with early RA, consecutively included 1992-2006. The patients are followed in daily practice according to a structured protocol for 15 years and data recorded in a web-based register. Also, through linkage of the BARFOT register to national registers we have acquired information on comorbidity and mortality. RESULTS: In all, 2857 patients have been included and over 80 scientific articles have been published. Phenotypic characteristics at disease onset, i.e. gender, smoking habits and autoantibody profiles have been addressed. The disease course over 15 years was described. Early predictors for persistent disease activity, impaired function, joint damage and co-morbidities have been identified. Treatment strategies have been studied. A randomized sub-study gave strong support for the treatment of recent RA with low-dose prednisolone in combination with disease-modifying anti-rheumatic drug. Furthermore, the impact of lifestyle factors, such as smoking, alcohol consumption, body weight and physical activity has been addressed. CONCLUSION: A register-based study like BARFOT has provided a basis for optimal long-term management of patients with RA. In addition, the register has made it possible to perform a diversity of studies of RA addressing various issues of major relevance to the patients.

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.

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.

Living with persistent rheumatoid arthritis: a BARFOT study.

AIM AND OBJECTIVE: To describe and understand the meaning of living with persistent rheumatoid arthritis. BACKGROUND: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis. DESIGN: A descriptive design based on a hermeneutic phenomenological method was used. METHODS: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method. RESULTS: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services. CONCLUSIONS: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way. RELEVANCE TO CLINICAL PRACTICE: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.

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

OBJECTIVES: 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. DESIGN: Prospective, long-term observational study of patients with early RA. SETTING: Secondary level of care; six participating centres from southern Sweden; both urban and rural populations. PARTICIPANTS: 698 patients were consecutively included in the study and 527 remained at the 8-year follow-up visit. Almost all patients were Caucasians, of which 64% were women. To be included, a patient, 18 years or older, had to fulfil the 1987 American College of Rheumatology criteria for RA and have a disease duration of no more than 1 year. RESULTS: Sustained remission was most common by the DAS28 Cr (14%), while 3% met the Boolean Cr and 5% the SDAI Cr, the latter figures increasing to 9% and 8%, respectively, when the patient's global assessment was excluded. Radiographic joint damage was common but least pronounced in patients in sustained remission by all criteria. Sustained remission was associated with rapid and lasting improvement in function assessed by the Health Assessment questionnaire, irrespective of criteria. CONCLUSIONS: The DAS28 Cr acquired more patients in sustained remission compared with the other criteria. In spite of that, radiographic damage and disability were not worse than that seen by other criteria and the patients' perspective was preserved. The DAS28 Cr may therefore still be used in long-term observational studies until more accurate criteria are available.

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.

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

OBJECTIVE: 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. METHODS: Thirty-nine patients, who were being treated for their RA in our outpatient rheumatology clinic and were beginning treatment with TNF-alpha inhibitors, agreed to evaluate and self-report their experience of fatigue, morning stiffness, pain, and capacity using the visual analogue scale (VAS) every third month during their first year of treatment. A quantitative method was used to study the changes in these four variables. In addition, at the same time, we studied the relationship between self-reported capacity and each of the three symptoms. RESULTS: After 12 months' treatment with TNF-alpha inhibitors, the change (median interquartile range [IQR]) measured with VAS was -14 (-38, -7) mm for fatigue, -22 (-47, -4) mm for morning stiffness, -28 (-50, 0) mm for pain and -27 (-48, -6) mm for capacity. All changes were statistically significant (p < 0.001). Baseline and 12 months' capacity correlated significantly with fatigue, morning stiffness and pain (all p < 0.01). In addition, the median change in self-reported capacity correlated significantly with the median change in each of the three symptoms (p < 0.01). CONCLUSION: During the first year of treatment with TNF-alpha inhibitors, patients reported decreased fatigue, morning stiffness and pain, while their capacity increased. The increased capacity rate closely followed the decrease in symptom rate.