| 1. |
- Bala, Sidona Valentina, et al.
(author)
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Living with persistent rheumatoid arthritis : A BARFOT study
- 2017
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 26:17-18, s. 2646-2656
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Journal article (peer-reviewed)abstract
- 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.
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| 2. |
- Bala, Sidona-Valentina, et al.
(author)
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Measuring person-centered care in nurse-led outpatient rheumatology clinics
- 2018
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In: International Conference on Probabilistic Models for Measurement.
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Conference paper (other academic/artistic)abstract
- BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC.AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics.DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software. RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86.SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.
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| 3. |
- Bala, Sidona-Valentina, et al.
(author)
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Measuring person-centered care in nurse-led outpatient rheumatology clinics
- 2018
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Conference paper (other academic/artistic)abstract
- BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC. AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software. RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86. SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.
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| 4. |
- Bala, Sidona Valentina, et al.
(author)
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Measuring person-centred care in nurse-led outpatient rheumatology clinics
- 2018
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In: Musculoskeletal Care. - : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 16:2, s. 296-304
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Journal article (peer-reviewed)abstract
- 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.
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| 5. |
- Bala, Sidona-Valentina
(author)
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Person-centered care in nurse-led outpatient rheumatology clinics. From experience to measurement.
- 2017
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Doctoral thesis (other academic/artistic)abstract
- 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.
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| 6. |
- Bala, Sidona Valentina, et al.
(author)
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Person-centred care in nurse-led outpatient rheumatology clinics : Conceptualization and initial development of a measurement instrument
- 2018
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In: Musculoskeletal Care. - : Wiley. - 1557-0681 .- 1478-2189. ; 16:2, s. 287-295
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Journal article (peer-reviewed)abstract
- 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.
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| 7. |
- Bala, Sidona Valentina, et al.
(author)
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Reported disability in relation to observed activity limitation, grip strength and physical function in women and men with rheumatoid arthritis
- 2021
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In: BMC Rheumatology. - : Springer Science and Business Media LLC. - 2520-1026. ; 5:1
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Journal article (peer-reviewed)abstract
- 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.
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| 8. |
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| 9. |
- Bala, Sidona-Valentina, et al.
(author)
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The experience of care at nurse-led rheumatology clinics
- 2012
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In: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 10:4, s. 202-211
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Journal article (peer-reviewed)abstract
- 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.
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| 10. |
- Bala, Sidona-Valentina, et al.
(author)
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The experience of care at nurse-led rheumatology clinics
- 2012
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In: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 10:4, s. 202-211
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Journal article (peer-reviewed)abstract
- 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.
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