| 1. |
- Van der Elst, Kristien, et al.
(författare)
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European Qualitative Research Project on Patient-preferred Outcomes in Early Rheumatoid Arthritis (EQPERA) : Rationale, Design and Methods of a Multi-country, Multi-center, Multi-language, Longitudinal Qualitative Study
- 2017
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 76:Suppl. 2, s. 1488-1489
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Tidskriftsartikel (refereegranskat)abstract
- Background: Ample studies exist on outcome assessment from the patient perspective in Rheumatoid Arthritis (RA), but little is known about health and treatment preferences of recently diagnosed patients, and how these evolve over time. A Belgian qualitative study has set the scene (1), but knowledge on cross-cultural nuances in patient-preferred outcomes is lacking. To this end, EQPERA – European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.Objectives: EQPERA aims to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands and Sweden. To yield sound results, specific preparations for this cross-country qualitative study are reported here.Methods: Several steps have been undertaken to ensure trustworthiness of findings and consistency across countries in sampling, interviewing, analysis and project management: a detailed research protocol has been written; the interview guides have been translated following a structured forward-backward linguistic validation process; templates for data collection and a quality assurance reporting tool have been developed; and local staff has been trained and supervised by the project leader in implementing the study protocol. Each country will document changes with sufficient detail in their research logbook.Results: EQPERA will be a qualitative, explorative, longitudinal study with active involvement of patient researchers. In each country, a purposive sample of patients with early RA will be individually interviewed 3–6 months after start of the initial RA treatment and subsequently, the same participants will be invited back to take part in a focus group 12–18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. The local teams will analyze their interview data using the constant comparison method as detailed in Qualitative analysis guide of Leuven, after which Saldana's guiding questions will be adopted for analyzing change over time. Afterwards, a meta-synthesis of all locally gathered and interpreted data will be conducted to explore and describe patterns, similarities and differences across countries.Conclusions: This European project is a first step in gathering contextual findings on patient-preferred outcomes in early RA. Such knowledge is of crucial importance for tailoring therapeutic approaches in a timely and meaningful way. Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. Large, multi-national qualitative projects are scarce in rheumatology research, thus applied data management and quality assurance strategies could be of interest to other researchers. © 2017, BMJ Publishing Group Limited
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| 2. |
- Van der Elst, Kristien, et al.
(författare)
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European Qualitative Research Project on Patient-preferred Outcomes in Early Rheumatoid Arthritis (EQPERA) : Rationale, Design and Methods of a Multi-country, Multi-center, Multi-language, Longitudinal Qualitative Study
- 2017
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Ingår i: European Congress of Qualitative Inquiry. ; , s. 117-117
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Konferensbidrag (refereegranskat)abstract
- Background: A successful medical outcome is no guarantee for patient perception of treatment success. Unraveling the patient’s perspective on outcome preferences is therefore crucial to deliver patient-centered, high-quality chronic illness care. Furthermore, the earliest stage of a chronic disease, such as in Rheumatoid Arthritis (RA), can be considered as a critical phase in the patient pathway for achieving optimal long-term outcomes. A Belgian qualitative study provided a first glimpse on what matters most to patients with recently diagnosed RA (1). However, there was a need for an international data set to better understand this complex phenomenon being studied, and to investigate whether the Belgian findings could be transferred to contexts with different national healthcare systems, practices and values. To this end, EQPERA –European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.Objectives: The overall research objective of EQPERA is to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands, Sweden and Norway, placing findings in a context broader than Belgium. Furthermore, EQPERA aims to add to qualitative methodology research.Methods: EQPERA applies a qualitative, explorative, longitudinal research design, which was developed in collaboration with patient research partners and the patient perspective in mind. In each country, a purposive sample of patients with early RA will be individually interviewed between 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group about 1 year after RA treatment initiation. Interviews will be analyzed using the constant comparison method as described in Qualitative Analysis Guide of Leuven. The longitudinal analysis will be guided by Saldaña’s steps for analyzing change through time in longitudinal qualitative research. To study the multinational findings, we will carry out a meta-synthesis of all locally gathered and interpreted data. The local research teams will independently employ a qualitative study, while the project leader will monitor the research as it unfolds and evolves. Moreover, to support consistency in data collection and the inter-coder reliability across countries, we will implement a detailed research protocol, a structured cultural translation and validation process of the interview guides, data collection templates, a quality assurance reporting tool and specific training sessions.Added value: Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. A European research context allows to uncover subtle cultural differences in patient-preferred outcomes across more or less similar organized countries. This project is thus a first step in gathering widely applicable findings in a research area where evidence-based knowledge is lacking, yet, highly needed to tailor care processes and optimize patient outcomes. Various data management strategies are applied to ensure quality and trustworthiness of our findings, and to promote a smooth European collaboration.
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| 3. |
- Aili, Katarina, 1980-, et al.
(författare)
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Long term trajectories of chronic widespread pain : a 21-year prospective cohort latent class analysis
- 2019
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Ingår i: Annals of the Rheumatic Diseases. - London, UK : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 78:Suppl 2, s. 239-239
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Tidskriftsartikel (refereegranskat)abstract
- Background: Chronic widespread pain (CWP) is common (population prevalence of approximately 10%) and has a significant impact on the individual, healthcare, and society. Currently little is known about the actual course of CWP over time, in particular the pathways to the development and maintenance of CWP. One useful way to understand these pathways is to identify common clusters of people who share pain trajectories. Such information is clinically useful to identify factors that predict development, persistence, and resolution of CWP.Objectives: To identify different longitudinal pain trajectories over a period of 21 years.Methods: A 21-year longitudinal open-population cohort of n=1858 adults (aged 20-74) who completed surveys relating to their pain status in at least three of the five time points 1995, 1998, 2003, 2007, and 2016. Pain status (presence of persistent pain) was ascertained from a report of painful regions (0-18) on a pain mannequin and categorised into: NCP (No chronic pain), CRP (Chronic regional pain) and CWP (chronic widespread pain). Latent Class Growth Analysis (LCGA) was carried out based on these categories. Participants were assigned to a trajectory cluster where the posterior probability was the highest. Model fit was assessed by statistical indices and clinical interpretations of clusters.Results: LCGA identified five clusters describing different pathways of NCP, CRP and CWP over the 21 years. The cluster “Persistent NCP” was the most common pathway (n = 1052, 57%) representing those with no chronic pain over the whole time period. The “Persistent CRP or Migration from CRP to NCP” cluster included 411 individuals (22%) representing a group with stable or improving regional pain. In the groups who were shown to increase pain status, the “Migration from NCP to CRP or CWP” cluster included 92 individuals (5%), and there were 184 individuals (10%) in the cluster “Migration from CRP to CWP” representing a group with regional pain who developed CWP. The final cluster “Persistent CWP” included 119 individuals (6%) representing those with stable CWP throughout the time period. Figure 1 presents the mean number of pain sites over time by cluster.Conclusion: This study showed that whilst half of adults report no chronic pain over 21 years, a substantial proportion develop CWP or have persistent CWP over this time period. Whilst a common trajectory was movement from chronic regional pain to no chronic pain, a pattern of improving CWP was not seen suggesting this is an uncommon trajectory. This is the first study to show long-term trajectories for CWP, and further work is now required to understand factors that may identify individuals at risk of worsening pain status and factors that might promote improvement. These identified pathways of chronic pain over a lifespan improve the understanding of long-term development of chronic pain and chronic widespread pain. © Aili et al. 2019. No commercial re-use. See rights and permissions. Published by BMJ.
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| 4. |
- Aili, Katarina, 1980-, et al.
(författare)
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Passive coping strategies but not physical function are associated with worse mental health, in women with chronic widespread pain – a mixed method study
- 2019
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Ingår i: Annals of the Rheumatic Diseases. - London, UK : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 78:Suppl 2, s. 2159-2159
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Tidskriftsartikel (refereegranskat)abstract
- Background: Chronic widespread pain (CWP) is a common condition (approximately 10% prevalence), that affects women twice as often as men. There is a lack of knowledge in how different coping strategies relates to health status during CWP development in a general population.Objectives: To explore different ways of coping with CWP and to relate the different coping strategies to health-related factors, before and after developing CWP.Methods: A sequential explorative mixed methods study including 19 women 45-67 of age, who had reported CWP in a survey 2016, but not in 1995. Individual interviews were analysed with a phenomenographic approach, and resulted in four categories of coping strategies. These categories were further explored with regard to four dimensions of health status (physical function, bodily pain, vitality and mental health) as measured by SF-36 (0-100, a lower score indicates more disability) and sleep problems measured both in 1995, and 2016.Results: The qualitative analysis revealed four categories representing different coping strategies, where each woman was labelled by the most dominant category; the mastering woman, the persistent woman, the compliant woman and the conquered woman. The first two categories emerged as being active coping strategies, and the latter two as passive. Women with passive strategies reported significantly lower vitality (median 57.5 vs 75, p=0.007) and worse mental health (median 54 vs 93, p=0.021) in 1995, before they had developed CWP compared with those with active coping strategies. No differences were seen between the groups on physical function, bodily pain or sleep.In 2016, there were still a difference between the passive and active group regarding mental health (median 56 vs 80, p=0.022), but not for vitality (median 35 vs 40, p=0.707). No differences were seen between the groups on physical function or bodily pain. All eight women with passive strategies reported problems with sleep in 2016, as compared to 6 of the 11 women with active strategies (p=0.045).Conclusion: Women that reported CWP in 2016, but not in 1995, described both active and passive coping strategies. The qualitative findings were associated with differences in vitality and mental health already in 1995, before they had developed CWP. Further, those with passive coping strategies reported worse health with regard to mental health and sleep problems in 2016. Interestingly, the groups did not differ in bodily pain or physical function neither in 1995 nor in 2016, which implicates the importance for the clinician to take the typical coping strategy into consideration, when meeting these patients in clinical settings. © Aili, Bergman, Bremander, Haglund & Larsson 2019. No commercial re-use. See rights and permissions. Published by BMJ.
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| 5. |
- Aili, Katarina, et al.
(författare)
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Sleep problems and fatigue as a predictor for the onset of chronic widespread painover a 5- and 18-year perspective : a 20-year prospective study
- 2018
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 77, s. 87-87
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Tidskriftsartikel (refereegranskat)abstract
- Background: If localised pain represent one end of a pain spectra, with overall better general health, chronic widespread pain (CWP) and fibromyalgia represent the other end of the spectra with worse general health and more comorbidities with other somatic diseases and mental illness. Sleep problems and fatigue are common among individuals reporting CWP and previous research indicate that sleep problems may be an important predictor for pain prognosis.Objectives: The aim of this population-based study was to investigate if sleep problems and fatigue predict the onset of CWP 5 and 18 years later.Methods: In order to get more stable baseline classifications of CWP, a wash-out period was used, including only individuals who had not reported CWP (according to ACR 1990 criteria for fibromyalgia) at baseline (−98) and three years prior baseline (−95). In all, data from 1249 individuals entered the analyses for the 5 year follow-up (−03) and 791 entered for the 18 year follow-up (−16). Four parameters related to sleep (difficulties initiating sleep, maintaining sleep, early morning awakening and non-restorative sleep), and one parameter related to fatigue (SF-36 vitality scale) were investigated as predictors for CWP. Binary logistic regression analysis were used for analyses.Results: All investigated parameters predicted the onset of CWP five years later (problems with initiating sleep (OR 1.91; 1.16–3.14), maintaining sleep (OR 1.85; 1.14–3.01), early awakening (OR 2.0; 1.37–3.75), non-restorative sleep (OR 2.27; 1.37–3.75) and fatigue (OR 3.70; 1.76–7.84)) in a model adjusted for age, gender, socio-economy and mental health. All parameters except problems with early awakening predicted the onset of CWP also 18 years later. In all, 785 individuals did not report any of the sleeping problems at baseline (fatigue not included), 268 reported one of the problems, 167 two, 128 three and 117 subjects reported to have all four sleep problems. Reporting all four sleep problems was significantly associated with CWP at follow-up at both time points when adjusting for age, gender, socio economy and mental health (OR 4.00; 2.03–7.91 and OR 3.95; 1.90–8.20); adjusting for age, gender, socio economy and number of pain regions (OR 2.94; 1.48–5.82 and OR 2.65; 1.24–5.64) and in a model adjusting for age, gender, socio economy and pain severity (OR 2.97;1.53–5.76; and OR 3.02;1.47–6.21) for the 5 year and 18 year follow-up respectively, compared to not reporting any of the sleep problems at baseline.Conclusions: Both sleeping problems and fatigue predicts the onset of CWP 5- and 18 years later. The results highlight the importance of the assessment of sleep quality in the clinic.
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| 6. |
- Aili, Katarina, 1980-, et al.
(författare)
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Sleep problems and fatigue as predictors for the onset of chronic widespread pain over a 5-and 18-year perspective
- 2018
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Ingår i: Bmc Musculoskeletal Disorders. - London : Springer Science and Business Media LLC. - 1471-2474. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPrevious research suggests that sleep problems may be an important predictor for chronic widespread pain (CWP). With this study we investigated both sleep problems and fatigue as predictors for the onset of CWP over a 5-year and an 18-year perspective in a population free from CWP at baseline.MethodsTo get a more stable classification of CWP, we used a wash-out period, including only individuals who had not reported CWP at baseline (1998) and three years prior baseline (1995). In all, data from 1249 individuals entered the analyses for the 5-year follow-up and 791 entered for the 18-year follow-up. Difficulties initiating sleep, maintaining sleep, early morning awakening, non-restorative sleep and fatigue were investigated as predictors separately and simultaneously in binary logistic regression analyses.ResultsThe results showed that problems with initiating sleep, maintaining sleep, early awakening and non-restorative sleep predicted the onset of CWP over a 5-year (OR 1.85 to OR 2.27) and 18-year (OR 1.54 to OR 2.25) perspective irrespective of mental health (assessed by SF-36) at baseline. Also fatigue predicted the onset of CWP over the two-time perspectives (OR 3.70 and OR 2.36 respectively) when adjusting for mental health. Overall the effect of the sleep problems and fatigue on new onset CWP (over a 5-year perspective) was somewhat attenuated when adjusting for pain at baseline but remained significant for problems with early awakening, non-restorative sleep and fatigue. Problems with maintaining sleep predicted CWP 18years later irrespective of mental health and number of pain regions (OR 1.72). Reporting simultaneous problems with all four aspects of sleep was associated with the onset of CWP over a five-year and 18-yearperspective, irrespective of age, gender, socio economy, mental health and pain at baseline. Sleep problems and fatigue predicted the onset of CWP five years later irrespective of each other.ConclusionSleep problems and fatigue were both important predictors for the onset of CWP over a five-year perspective. Sleep problems was a stronger predictor in a longer time-perspective. The results highlight the importance of the assessment of sleep quality and fatigue in the clinic.
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| 7. |
- Aili, Katarina, et al.
(författare)
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Sleep problems and fatigue as predictors for the onset of chronic widespread pain over a 5- and 18-year perspective 11 Medical and Health Sciences 1117 Public Health and Health Services
- 2018
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Ingår i: BMC Musculoskeletal Disorders. - : Springer Science and Business Media LLC. - 1471-2474. ; 19:1
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Forskningsöversikt (refereegranskat)abstract
- Background: Previous research suggests that sleep problems may be an important predictor for chronic widespread pain (CWP). With this study we investigated both sleep problems and fatigue as predictors for the onset of CWP over a 5-year and an 18-year perspective in a population free from CWP at baseline. Methods: To get a more stable classification of CWP, we used a wash-out period, including only individuals who had not reported CWP at baseline (1998) and three years prior baseline (1995). In all, data from 1249 individuals entered the analyses for the 5-year follow-up and 791 entered for the 18-year follow-up. Difficulties initiating sleep, maintaining sleep, early morning awakening, non-restorative sleep and fatigue were investigated as predictors separately and simultaneously in binary logistic regression analyses. Results: The results showed that problems with initiating sleep, maintaining sleep, early awakening and non-restorative sleep predicted the onset of CWP over a 5-year (OR 1.85 to OR 2.27) and 18-year (OR 1.54 to OR 2.25) perspective irrespective of mental health (assessed by SF-36) at baseline. Also fatigue predicted the onset of CWP over the two-time perspectives (OR 3.70 and OR 2.36 respectively) when adjusting for mental health. Overall the effect of the sleep problems and fatigue on new onset CWP (over a 5-year perspective) was somewhat attenuated when adjusting for pain at baseline but remained significant for problems with early awakening, non-restorative sleep and fatigue. Problems with maintaining sleep predicted CWP 18 years later irrespective of mental health and number of pain regions (OR 1.72). Reporting simultaneous problems with all four aspects of sleep was associated with the onset of CWP over a five-year and 18-yearperspective, irrespective of age, gender, socio economy, mental health and pain at baseline. Sleep problems and fatigue predicted the onset of CWP five years later irrespective of each other. Conclusion: Sleep problems and fatigue were both important predictors for the onset of CWP over a five-year perspective. Sleep problems was a stronger predictor in a longer time-perspective. The results highlight the importance of the assessment of sleep quality and fatigue in the clinic.
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| 8. |
- Aili, Katarina, et al.
(författare)
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Women’s experiences of coping with chronic widespread pain – a qualitative study
- 2018
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 77, s. 1815-1815
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Tidskriftsartikel (refereegranskat)abstract
- Background: Approximately ten percent of the population report chronic widespread pain (CWP), the condition is more common among women than men. For most people, the pain interferes with many aspects of every-day life and implies large consequences. However, the group reporting CWP is heterogeneous and there is a need for better understanding of the different strategies used for coping with pain in every-day life.Objectives: The purpose of this study was to describe women’s experiences of how to cope with CWP.Methods: The study had a descriptive design with a qualitative content analysis approach. Individual interviews were conducted with 19 women, 31–66 of age, who had reported CWP in a survey 2016. CWP was defined according to the 1990 ACR criteria for fibromyalgia. To be considered chronic, the pain should have persisted for more than three months during the last 12 months. A manifest qualitative content analysis was used to analyze the main question “How do you cope with your chronic widespread pain?” The analysis resulted in four categories.Results: Women described their coping with CWP in four different ways; to take control, to continue as usual, to follow instructions and to rest. To take control meant to make deliberate decisions to handle everyday day life. It also meant to take care of oneself, to think positive and to exercise at an adequate level. To continue as usual meant not to listen to body signals and either to ignore or accept the pain. To follow instructions meant listening to the health professionals and following advices, but without taking any part of the responsibility for the treatment outcome. To rest meant to perceive an unreasonable need for recovery, to resign and let the pain set the terms for the daily living.Conclusions: Women expressed different ways of coping with CWP including both active and passive strategies. The coping strategies included two dimensions, where one ranged from actively taking control over the pain, to passively following instructions and the other from actively continue as usual by either accepting or ignoring the pain to passively rest and being mastered by pain.
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| 9. |
- Andersson, Siv Folkhammar, et al.
(författare)
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Arthritis management in primary care : A study of physiotherapists' current practice, educational needs and adherence to national guidelines
- 2017
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Ingår i: Musculoskeletal Care. - Chichester : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 15:4, s. 333-340
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: With an increasing number of patients with osteoarthritis (OA) and rheumatoid arthritis (RA) in primary care, our aim was to investigate arthritis-related practice in physiotherapy and to study adherence to evidence-based care.METHODS: Seventy physiotherapists (PTs) working in primary care were emailed a questionnaire to investigate current practice and the number of roles assumed by PTs, the degree of confidence, educational needs and adherence to national guidelines in managing patients with OA or RA. Interventions supported by national guidelines were compared with reports of treatment modalities in the questionnaire.RESULTS: Sixty-four (91%) PTs responded, and they reported a higher degree of confidence in assessment, treatment and education of patients with OA than for those with RA (p < 0.001). The total number of roles assumed by the PTs was higher in the management of OA than for RA (p < 0.001). PTs who assumed a greater number of roles also reported a stronger degree of confidence in assessing OA (p = 0.036). Those who assumed fewer roles also reported less confidence in RA treatment (p = 0.045). Recommendations in the guidelines were followed by the majority of PTs for eight of 11 treatment modalities in OA and for six of six in RA.CONCLUSIONS: PTs reported a lower degree of confidence and the assumption of fewer roles in managing patients with RA compared with OA. There was good adherence to the national guidelines for almost all the treatment modalities listed. Even so, the results indicate a need for education, especially in chronic inflammatory arthritis care.
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| 10. |
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