Elisabet Welin Henriksson

Treatment of refractory SLE with rituximab plus cyclophosphamide: clinical effects, serological changes, and predictors of response.

Objective: To evaluate efficacy, serological responses, and predictors of response in patients with severe and refractory systemic lupus erythematosus (SLE) treated with rituximab plus cyclophosphamide. Methods: 16 patients entered a treatment protocol using rituximab plus cyclophosphamide. Disease activity was assessed by the SLE disease activity index (SLEDAI) and by the British Isles Lupus Assessment Group (BILAG) index. Results: At six months follow up, mean SLEDAI values decreased significantly from (mean (SD)) 12.1 (2.2) to 4.7 (1.1). Clinical improvement (50% reduction in SLEDAI) occurred in all but three patients. All but one patient responded according to BILAG. Remission defined as SLEDAI <3 was achieved in nine of 16 patients. Isotype analysis of anti-dsDNA antibodies revealed preferential decreases of IgG and IgA, but not IgM. Higher absolute numbers of CD19+ cells at baseline were correlated with shorter depletion time (r = −0.6). Conclusions: The majority of patients improved following rituximab plus cyclophosphamide. The differential downregulation of anti-DNA of the IgG and IgA but not the IgM isotypes supports the hypothesis that cells producing pathogenic autoantibodies are preferentially targeted by the treatment. The fact that greater absolute numbers of CD19+ cells at baseline predict a less impressive clinical and serological response suggests that more flexible dosing could be advantageous.

Patients with polymyositis or dermatomyositis have reduced grip force and health-related quality of life in comparison with reference values: an observational study

OBJECTIVES The aims of this study were to investigate hand function in PM and DM patients and compare this with reference values in healthy individuals and also to investigate if hand function correlated with activity performance and health-related quality of life. METHODS An observational cross-sectional study was performed in 18 women and 13 men with PM or DM with established disease. Grip force and hand mobility were assessed by Grippit and Escola Paulista de Medicina-Range of Motion scale. Activity performance was measured with myositis activities profile and health-related quality of life by short form-36 (SF-36). RESULTS Women and men with PM and DM with mean disease duration of 6.8 (5.5) years had a significantly lower grip force than gender- and age-matched healthy individuals (women 71% and men 60%). They also had significantly lower mean values in all dimensions of the health-related quality of life instrument SF-36 compared with the Swedish population. In patients with PM and DM, the grip force correlated significantly with the ability to perform domestic activities. In women with PM and DM, the grip force correlated significantly with the health-related quality of life dimensions vitality and mental health. There were no significant differences between patients with PM and DM regarding grip force, hand mobility, activity performance or health-related quality of life. CONCLUSIONS Patients with PM or DM have reduced grip force that could influence activity performance and health-related quality of life.

Long-term follow-up in lupus nephritis patients treated with rituximab—clinical and histopathological response

OBJECTIVE To investigate the long-term clinical, histological and serological affects of B-cell-depleting therapy (BCDT) in patients with LN refractory to conventional treatment. METHODS Twenty-five patients, followed for a mean time of 36 months (9-95 months), were included. Renal disease activity was evaluated with the BILAG index and renal response was determined according to the LN European consensus statement. Renal biopsies were performed for histological evaluation at baseline and follow-up. RESULTS Partial response (PR) or complete renal response (CR) was observed in 22 of 25 after a median of 12 months. Sixteen patients achieved CR after a median of 24 months. Six patients experienced a renal relapse. Proteinuria decreased significantly (P = 0.0002) from baseline to 36 months. A noteworthy histological improvement was seen in nearly all patients with a significant reduction in activity index (P = 0.01). Longer depletion time and low baseline values of IgM were indicative of achieving clinical remission during the first year after treatment (P = 0.03 and P = 0.04, respectively). CONCLUSION In therapy-resistant LN, BCDT induced clinical and histological improvements in the majority of patients. Transition from PR to CR was mainly seen during the second year of follow-up. Patients with longer depletion time and low baseline levels of IgM were more likely to gain a faster remission, suggesting that the clinical benefit may be linked to suppression of autoreactive plasmablasts. Although formal evidence of BCDT in LN is lacking, our data may provide guidance to clinicians considering therapeutic options in patients with refractory LN.

Women’s experience of SLE-related fatigue: a focus group interview study

OBJECTIVE The aim of this study was to describe womens experience of SLE-related fatigue, how they express the feeling of fatigue, impact on life and strategies developed to manage fatigue in daily living. METHOD Seven, semi-structured focus group discussions with 33 women were audio-taped, transcribed verbatim and analysed according to qualitative content analysis. RESULTS Perceptions of SLE-related fatigue were sorted into four themes. Nature of Fatigue, involved the sensation, occurrence and character. Aspects Affected by Fatigue described emotions that arose together with fatigue as well as aspects of work, family life, social contacts and leisure activities that were affected by fatigue. Striving Towards Power and Control concluded the array of ways used to manage daily life and were categorized into the mental struggle, structure, restrict and provide. Factors Influencing the Perception of Fatigue described understanding from their surroundings and pain as strongly influencing the experience and perception of fatigue. CONCLUSION SLE-related fatigue was portrayed as an overwhelming phenomenon with an unpredictable character, resulting in the feeling that fatigue dominates and controls most situations in life. The choice of strategies was described as a balance with implications for how fatigue limited a persons life. Health care professionals are advised to take a more active role to empower people with SLE to find their own balance as a way to achieve a feeling of being in control.

Authenticity in Learning--Nursing Students' Experiences at a Clinical Education Ward.

Purpose – This study aims to explore and understand first year nursing students’ experiences of learning at a clinical education ward.Design/methodology/approach – The setting is a clinical education ward for nursing students at a department of infectious diseases. A qualitative study was carried out exploring students’ encounters with patients, supervisors, students and other health care professionals. A total of 19 students were interviewed. Data were analyzed using qualitative content analysis investigating both the manifest and the latent content.Findings – The most important components in students’ learning are mutual relationships and a sense of belongingness. A mutual relationship between the students and the patients is created and becomes the basis of students’ learning. Belongingness means the students’ experience of being for real a part of the team taking care of the patients.Research limitations/implications – The study, while linked to a particular teaching hospital, offers insights of more ...

Rituximab-treated membranous lupus nephritis: clinical outcome and effects on electron dense deposits

Membranous lupus nephritis (MLN) is characterised by proteinuria, a risk of the development of nephrotic syndrome and progressive deterioration in renal function. Despite the usage of various immunosuppressive agents, no solid, evidence-based recommendations for the treatment of MLN have been established and new therapeutic strategies are needed in therapy-resistant cases.1 During the past few years, rituximab has evolved as a promising new agent in severe lupus nephritis.2,–,4 The aim of this study was to evaluate the clinical and histopathological response to treatment with rituximab plus cyclophosphamide in patients with severe and therapy-resistant MLN. Six female patients with MLN confirmed at a recent renal biopsy were included. The patients were selected for having proteinuria of 2 g/24 h or greater and recent/previous failure of conventional immunosuppressive agents. All patients were treated with ACE and/or, angiotensin II receptor blockers. In all cases, at least four of the American College of Rheumatology criteria for …

Patients' approaches to students' learning at a clinical education ward-an ethnographic study

BackgroundIt is well known that patients’ involvement in health care students’ learning is essential and gives students opportunities to experience clinical reasoning and practice clinical skills when interacting with patients. Students encounter patients in different contexts throughout their education. However, looking across the research providing evidence about learning related to patient-student encounters reveals a lack of knowledge about the actual learning process that occurs in encounters between patients and students. The aim of this study was to explore patient-student encounters in relation to students’ learning in a patient-centered health-care setting.MethodsAn ethnographic approach was used to study the encounters between patients and students. The setting was a clinical education ward for nursing students at a university hospital with eight beds. The study included 10 observations with 11 students and 10 patients. The observer followed one or two students taking care of one patient. During the fieldwork observational and reflective notes were taken. After each observation follow-up interviews were conducted with each patient and student separately. Data were analyzed using an ethnographic approach.ResultsThe most striking results showed that patients took different approaches in the encounters with students. When the students managed to create a good atmosphere and a mutual relationship, the patients were active participants in the students’ learning. If the students did not manage to create a good atmosphere, the relationship became one-way and the patients were passive participants, letting the students practice on their bodies but without engaging in a dialogue with the students.ConclusionsPatient-student encounters, at a clinical education ward with a patient-centred pedagogical framework, can develop into either a learning relationship or an attending relationship. A learning relationship is based on a mutual relationship between patients and students resulting in patients actively participating in students’ learning and they both experience it as a joint action. An attending relationship is based on a one-way relationship between patients and students resulting in patients passively participating by letting students to practice on their bodies but without engaging in a learning dialogue with the students.

Supervisors’ pedagogical role at a clinical education ward – an ethnographic study

BackgroundClinical practice is essential for health care students. The supervisor’s role and how supervision should be organized are challenging issues for educators and clinicians. Clinical education wards have been established to meet these challenges and they are units with a pedagogical framework facilitating students’ training in real clinical settings. Supervisors support students to link together theoretical and practical knowledge and skills. From students’ perspectives, clinical education wards have shown potential to enhance students’ learning. Thus there is a need for deeper understanding of supervisors’ pedagogical role in this context.We explored supervisors’ approaches to students’ learning at a clinical education ward where students are encouraged to independently take care of patients.MethodAn ethnographic approach was used to study encounters between patients, students and supervisors. The setting was a clinical education ward for nursing students at a university hospital. Ten observations with ten patients, 11 students and five supervisors were included in the study. After each observation, individual follow-up interviews with all participants and a group interview with supervisors were conducted. Data were analysed using an ethnographic approach.ResultsSupervisors’ pedagogical role has to do with balancing patient care and student learning. The students were given independence, which created pedagogical challenges for the supervisors. They handled these challenges by collaborating as a supervisory team and taking different acts of supervision such as allowing students their independence, being there for students and by applying patient-centredness.ConclusionThe supervisors’ pedagogical role was perceived as to facilitate students’ learning as a team. Supervisors were both patient- and student-centred by making a nursing care plan for the patients and a learning plan for the students. The plans were guided by clinical and pedagogical guidelines, individually adjusted and followed up.

Body awareness in persons diagnosed with rheumatoid arthritis

Living with rheumatoid arthritis (RA) poses physiological and psychological demands on a person. RA is a autoimmune disease that can cause pain, disability, and suffering. The ability to notice bodily inner sensations and stimuli (body awareness, BA) is described in the literature in ways that could have either a positive or a negative impact on a persons health. The concept of BA is complex and a thorough understanding is needed about what BA means from the patients perspective. This study was therefore conducted to acquire greater insight into this phenomenon. The study is grounded in a phenomenological life-world perspective. Eighteen narrative interviews were conducted in patients (age range 23–78 years) with RA. The interviews were analyzed using the Empirical Phenomenological Psychological method. General characteristics were found running through all 18 interviews, indicating that the disease resulted in a higher degree of negatively toned BA. BA was either a reactive process of searching or controlling after disease-related symptoms or a reactive process triggered by emotions. BA was an active process of taking an inventory of abilities. All participants had the ability to shift focus from BA to the outside world. Four typologies were identified: “A reactive process on symptoms,” “A reactive process on emotional triggers,” “An active process of taking an inventory of abilities,” and “A shifting from BA to the outside world.” In conclusion, because BA can be both positively and negatively toned, health care professionals must have a good understanding of when BA is positive and when it is negative in relation to the patient. RA had caused a higher degree of negatively toned BA. Thus, the ability to shift attention from BA to activity in the outside world could sometimes be beneficial for the patients general health.

The experiences of pregnancy in women with SSA/Ro52 autoantibodies

OBJECTIVE  Congenital heart block may develop in the foetus during pregnancy in SSA/Ro52 autoantibody-positive women. The aim of this study was to investigate how women with SSA/Ro52 autoantibodies experience their pregnancy in terms of the risk of developing foetal heart block, and in undergoing serial ultrasound Doppler echocardiography to detect early signs of congenital heart block. METHODS  Data were collected through individual semi-structured interviews with SSA/Ro52-positive women post-pregnancy (n = 14). The interviews were audio-taped, transcribed verbatim and analysed according to qualitative content analysis. RESULTS  Three categories emerged from the responses: information, emotional response and support. The information received prior to and during early pregnancy was focused on the need for attending a specialized antenatal clinic, and information on the risk for congenital heart block was scarce or missing. During gestational weeks 18-24, when the ultrasound/Doppler examinations were performed, all women described increased stress. However, the interaction with the caregivers made the women feel more safe and secure. Several women also said that they did not emotionally acknowledge the pregnancy until after gestational week 24. None had been offered psychological support. CONCLUSION  There is a need for structured information and organized programmes for the surveillance of women who are SSA/Ro52 positive during their pregnancy. Further, offering psychological support to the women and their families to manage the stress and to facilitate the early attachment to the child should be considered.