| 1. |
- Björk, Mathilda, et al.
(författare)
-
Inflammatory Arthritis and the Effect of Physical Activity on Quality of Life and Self-reported Function : A Systematic Review and Meta-analysis
- 2022
-
Ingår i: Arthritis care & research. - : John Wiley & Sons. - 2151-464X .- 2151-4658. ; 74:1, s. 31-43
-
Forskningsöversikt (refereegranskat)abstract
- OBJECTIVE: Although physical activity (PA) is an evidence-based intervention that reduces disease-related symptoms and comorbidity in rheumatoid arthritis (RA), PA's effect on self-reported function and Quality of Life (QoL) has not been analyzed. This study synthesizes the evidence for the effectiveness of PA on QoL and self-reported function in adults with RA, spondyloarthritis (SpA), and psoriatic arthritis (PsA).METHODS: The databases PubMed, Embase, CINAHL, and Cochrane Central Register of Controlled Trials (CENTRAL) were searched to identify relevant randomized controlled trials (RCTs). Screening, risk of bias assessment (using RoB 2.0 tool), and data extraction were independently performed by two or more of the authors. The meta-analyses were conducted with a random-effects model.RESULTS: The systematic review included 55 RCTs and the meta-analysis included 37 RCTs. In 55 studies included, 76% investigated RA, 20% investigated SpA, and 4% investigated PsA. In RA effects were found on QoL and function compared to inactive controls, effects not sustained in comparison to active controls. In SpA the effects of PA on QoL were in favor of the control group. Effects on function were found compared to inactive controls and sustained in fatigue and pain when compared to active controls. In PsA no effects on QoL were found but on function compared to inactive controls. The effect size was below 0.30 in the majority of the comparisons.CONCLUSION: PA may improve QoL and self-reported function in RA, SpA, and PsA. However, larger trials are needed, especially in SpA and PsA.
|
|
| 2. |
- Blum, Nadine Schäffer, et al.
(författare)
-
Patients’ experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)—a qualitative evaluation
- 2024
-
Ingår i: BMC Rheumatology. - 2520-1026. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Despite continuous improvements in anti-rheumatic pharmacological treatment, people with chronic inflammatory arthritis still report substantial disease impact. Based on the framework for complex interventions, we thus developed INSELMA, a novel nurse-coordinated multidisciplinary self-management intervention for patients with rheumatoid arthritis, psoriatic arthritis or axial spondyloarthritis. Based on individual biopsychosocial assessments, a rheumatology nurse facilitated goal setting and coordinated interdisciplinary support. The aim of this study was to explore the patients’ experience of participating in the six-months INSELMA intervention. Methods: Individual semi-structured interviews were conducted with 15 of the participants after their final follow-up. Thematic analysis was applied. Results: The analysis derived four overall themes. (1) A new opportunity at the right time. The participants’ disease impacted all areas of daily life. Participation in INSELMA was experienced as an opportunity to improve symptoms and together reduce long-held challenges they had fought alone, until now. (2) The importance of person-centred goals. The participants found it meaningful to work with their individual goals, which encompassed physical, psychological, and social factors. Having time between consultations to work with goals at home was important. (3) Empathy, partnership and a little nudging from health professionals are essential. The empathic nurses’ continuous support and coaching helped participants become aware of their own resources. The participants highlighted having access to support from a physiotherapist and occupational therapist with rheumatology experience as important. (4) I got more than I could have hoped for. Most of the participants experienced decreased symptom load and improvement in physical strength, mobility, sleep, and mood as well as increased energy, knowledge, and self-management ability. The participants expressed new hope for the future with an improved ability to manage their symptoms and work towards new goals. Conclusion: The participants found the INSELMA intervention meaningful and feasible. They experienced decreased disease impact and increased activity levels, facilitated by empathy and self-management support from health professionals.
|
|
| 3. |
- Damgaard, Astrid Jensen, et al.
(författare)
-
Self-management support needs of patients with inflammatory arthritis and the content of self-management interventions : a scoping review
- 2023
-
Ingår i: Seminars in Arthritis and Rheumatism. - 0049-0172. ; 60
-
Forskningsöversikt (refereegranskat)abstract
- Background: Self-management skills can empower a person to manage the physical, psychological, and social impact of a health condition. However, the components of self-management interventions differ widely between studies and interventions. By performing a scoping review, we aimed to describe patients’ self-management needs and how health professionals (HPs) can provide effective self-management support to patients with inflammatory arthritis (IA). Objectives: 1) to identify the evidence for self-management support needs of patients with IA, and 2) to identify the content (theory/theoretical approach, mode of delivery, duration and frequency) of self-management interventions that target patients with IA. Methods: In May 2021, we performed a systematic literature search (from 2000 onward) in five databases (CINAHL (Ebsco), Cochrane Library, Embase (Ovid), Medline (Ovid) and PsycINFO (Ovid)) regarding self-management in patients with IA. Results: Out of 11,748 records identified, we included 31 articles describing patients’ support needs and 33 articles describing the content of self-management interventions. Patients’ support needs were sorted into six topics: 1) disease impact and the pharmacological treatment, 2) care continuity and relations with HPs, 3) the importance of non-pharmacological treatment, 4) the need for support from family and friends, 5) support needs related to work issues, and 6) contextual preferences for self-management support. The theory/theoretical approach, mode of delivery, duration and frequency varied widely and were often unclearly or insufficiently described. In addition, the self-management concept was scarcely – or not – defined in the included articles. The identified topics for support needs were compared with the described content in the included articles. Only a few self-management interventions focused on patients’ need for support in relation to work, and to family and friends. Conclusion: HPs provided self-management support to patients with IA in various ways, but there were gaps between the patients’ support needs and the identified interventions. In developing self-management interventions, the self-management concept needs to be defined and a clear theory is required to support the development of the intervention. Future studies should seek to investigate various modes of delivery, frequency and duration, to develop effective interventions that meet patients’ support needs.
|
|
| 4. |
- Esbensen, Bente Appel, et al.
(författare)
-
Being given a cancer diagnosis in old age: A phenomenological study.
- 2008
-
Ingår i: International Journal of Nursing Studies. - : Elsevier BV. - 1873-491X .- 0020-7489. ; 45:3, s. 393-405
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives The aim of the study was to illuminate the lived experience of being given a cancer diagnosis in old age. Background Little research has been done on the experience of elderly people developing cancer and the impact of the illness on their lives. Such knowledge is needed to support elderly people in dealing with issues arising after cancer is diagnosed. Design A descriptive phenomenological method was used to investigate the phenomenon “the lived experience of being given a cancer diagnosis in old age”. Participants In total, 16 persons (aged 65+, mean age 76, range 68–83) with cancer were interviewed, all referred to the same oncology outpatient clinic in Copenhagen County. Method Open-ended interviews were used to get a clear understanding of the experience of a cancer diagnosis in old age. Giorgi's phenomenological analysis was used. Findings The findings showed that the essential meaning of the lived experience was “Illness as a turning point marking old age”. This main essence was represented overall by three essences: “Illness means losing control”, “Disturbing the family balance” and “Life and death suddenly apparent”. These three essences were manifested through seven constituents: growing old in the context of illness, becoming a patient with cancer, everyday life being controlled by bodily limitations, managing family reactions, becoming conscious about dying and death through illness experience and retaining hope, and enjoying life. Conclusion It is important in clinical practice, to identify the specific meaning the turning point has for an elderly person with cancer, and to understand the particular approach he or she uses to handle the awareness of being old.
|
|
| 5. |
- Esbensen, Bente Appel, et al.
(författare)
-
Being next of kin to an elderly person with cancer
- 2010
-
Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 1471-6712 .- 0283-9318. ; 24:4, s. 648-654
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: The aim of the study was to illuminate the experience of life as next of kin to an elderly person with cancer. Background: Being next of kin to an elderly person with cancer and its impact on everyday life has been sparsely researched. Such understanding is needed to support both the sufferers and their relatives in dealing with issues arising after a cancer diagnosis in old age. Design: A qualitative study was used to illuminate the experience of next of kin of elderly people with cancer. Method: In total, 16 (mean age 61, range 42-80) persons were interviewed. Open-ended interviews were used to get closer to their experiences. Manifest and latent content analysis were used. Findings: Two main categories, Transformations of roles and Changed frames of mind, were identified, as well as four subcategories. The study showed that the cancer activated perceptions in the next of kin about ageing and growing old. The onset of the disease was a turning point, i.e. the disease highlighted that the patient had become old and the combination of this and the disease reinforced the negative image of old age in general. The next of kin found that the diagnosis of cancer was followed by role changes within the family. It awoke feelings of anger and doubt and made the next of kin stop and think about what is really important in life. Conclusion: With the onset of a serious illness, all next of kin are greatly affected in many ways but especially by changes in their roles, without, however, being prepared. The phenomenon of time seems to have significant meaning to the next of kin, although it may be perceived differently from the perspective of healthcare professionals than from that of next of kin.
|
|
| 6. |
- Esbensen, Bente Appel, et al.
(författare)
-
Dependency in elderly people newly diagnosed with cancer - A mixed-method study
- 2012
-
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889. ; 16:2, s. 137-144
-
Tidskriftsartikel (refereegranskat)abstract
- Purpose: This study, based on data from an empirical investigation, combines quantitative and qualitative approaches in a mixed-method design to explore dependency in elderly people newly diagnosed with cancer. Methods and sample: 101 elderly people newly diagnosed with cancer were included in the quantitative part, with 16 in the qualitative part. A questionnaire concerning quality of life and dependency issues was developed. For the qualitative part, open-ended interviews were conducted to get closer to the experience of dependency. Results: Combining the two methods was seen as complementary. Involvement of the patient in decision-making related to contact with the primary and secondary health-care systems is an important element in reducing the perception of dependency and maintaining the Quality of Life (QoL) of elderly cancer patients. A more precise intervention in this patient population can be achieved by assessing. Activities of Daily Living (ADL) in the elderly. Receiving assistance from children seems to increase perceived dependency and to affect QoL negatively. Conclusions: The results of this mixed-method study indicate that dependency had a negative influence on the elderly with cancer. Being dependent on others was experienced as deterioration. Fatigue represents a significant risk factor for decreased functional ability and is experienced as a reminder of being old and the situation as being out of control. Patients may benefit from health-care professionals acquiring a complete picture of dependency and cancer-related fatigue in the elderly through a systematic assessment, where for example, functional limitations related to fatigue can be determined. (C) 2011 Elsevier Ltd. All rights reserved.
|
|
| 7. |
- Esbensen, Bente Appel
(författare)
-
ELDERLY PERSONS LIVING WITH CANCER. Quality of life and lived experience.
- 2006
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Over the coming decades, the numbers of elderly will increase, and through improved lifestyles and better treatment longevity has increased, and with it, the risk of contracting cancer. How elderly people live with cancer has until now attracted limited research. The overall aim of this thesis was to investigate the QoL of elderly persons from the time of a cancer diagnosis through the following six months. The aim was further to investigate changes in QoL over time in relation to type of cancer, age, socio-economic conditions, ability to perform Activities of Daily Living (ADL), contact with the health-care system, social network and support, and hope. Moreover, the aim was to illuminate the lived experience of getting cancer in old age. The study had both a quantitative and a qualitative part. The quantitative part was a follow-up study of 101 individuals (65+) recently diagnosed with cancer (74 women, 27 men), but was reduced to 75 (57 women, 18 men) by the six-month investigation point. QoL of newly diagnosed persons with cancer aged 65 years were investigated at baseline, and three and six months after using: EORTC QLQ-C30, Katz ADL-Index, Nowotny's Hope Scale and the Interview Schedule for Social Interaction (ISSI). The follow-up study was based on an interview schedule performed as three structured interviews. In the qualitative study, a descriptive phenomenological method was used to investigate ?the lived experience of getting cancer in old age?. In total, 16 persons, all recruited from the follow-up study, (aged 65+, mean age 76 (range 68-83)) with cancer were interviewed based on open-ended interview. Factors associated with low QoL at baseline were ?no other incomes than retirement pension?, ?low level of hope?, and ?lung cancer?. In addition, ?needing more help in activities of daily living?, ?getting help from grown-up children? and ?needing help with PADL (Personal Activities in Daily Living)? were associated with low QoL. No significant changes were found in QoL from baseline to three months, while perceived social network deteriorated significantly. Dependency, reduced financial circumstances, and low level of hope were significantly associated with low QoL at the three-month follow-up. Fatigue was the most reported symptom at baseline and at three and six months. Emotional function improved significantly during the six first months, and complaints of nausea and vomiting decreased significantly. Support from grandchildren increased significantly. 'Contact with district nurse' at baseline predicted deteriorated QoL from baseline following six months, as well as 'low level of hope' and 'needing more help in daily living'. About 30% of the total sample deteriorated in QoL from baseline to 6-month follow-up. The findings in the qualitative study showed the essential meaning of the lived experience to be ?Illness as a turning point marking old age?. This was represented by three essences: ?Illness means losing control?, ?Disturbing the family balance? and ?Life and death suddenly apparent?. These three essences were signified in seven constituents: getting cancer meant being forced into the role of a patient, losing control, and being dependent on health care. Balancing one's own needs and burdens with the needs and uncertainties of family members became essential; as a parallel to being conscious of dying and death, hope and enjoyment of life became vital. The majority of the participants showed an ability to adjust to the new condition. However, about one third had deteriorated in QoL by the significant ?10 units at six-month follow-up, and clinical practice needs to pay specific attention to the most vulnerable groups of elderly persons with cancer. The most vulnerable stood out as those with advanced disease and decreased hope, those with increased need of both formal and informal assistance, those with reduced financial means and those with lung cancer, and thus they need specific attention from health care professionals. In addition, health care professionals need to be conscious that the elderly with cancer are a heterogeneous group. Therefore, it is important to identify the specific meaning that the cancer has for the individual, and to understand the particular abilities he or she has to adapt to the illness and the process of growing old as a part of their life.
|
|
| 8. |
- Esbensen, Bente Appel, et al.
(författare)
-
Quality of life of elderly persons with cancer: a 3-month follow-up.
- 2006
-
Ingår i: Cancer Nursing. - 1538-9804. ; 29:3, s. 214-224
-
Tidskriftsartikel (refereegranskat)abstract
- We investigated the quality of life (QoL) of newly diagnosed persons with cancer aged 65 years at baseline and 3 months after, in relation to age, contact with the healthcare system, activities of daily living, hope, social network and support using the European Organization for Research and Treatment of Cancer QLQ-C30, Katz ADL, Nowotny's Hope Scale, and the Interview Schedule for Social Interaction. Participation at baseline was 101 (74 women, 27 men), and after 3 months was 85(66 women, 19 men). Fatigue was the most reported symptom both at baseline and 3 months after. No significant changes were found in QoL from baseline to 3 months after, whereas perceived social network and 2 subscales ("confidence" and "comes from within") in Nowotny's Hope Scale deteriorated significantly. Dependency, reduced economic ability, and low level of hope were significantly associated with low QoL at the 3-month follow-up. From the perspective of QoL, nurses need to address more specifically the most vulnerable elderly cancer patients: those who are dependent in instrumental activities of daily living, those who perceive reduced economic ability, and those who need assistance to discover new strategies to strengthen hope.
|
|
| 9. |
- Esbensen, Bente Appel, et al.
(författare)
-
Quality of life of elderly persons with cancer: a 6-month follow-up
- 2007
-
Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 1471-6712 .- 0283-9318. ; 21:2, s. 178-190
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to investigate possible changes in quality of life (QoL) in elderly persons diagnosed with cancer (65 years and above), in relation to age, contact with the health-care system, activities of daily living, hope, social network and support. The investigation points were at time of diagnosis (baseline), and again 3 and 6 months after the diagnosis. The study also aimed to investigate which of the aforementioned factors predicted deteriorated QoL in elderly persons with cancer from baseline to the 6-month investigation. At baseline, the sample consisted of 101 individuals aged (age 65+) recently diagnosed with cancer (74 women, 27 men), but was reduced to 75 (57 women, 18 men) by the 6-month investigation point. EORTC QLQ C30, Katz ADL, Nowotny's Hope Scale and Interview Schedule for Social Interaction were used in structured personal interviews and questionnaires. Emotional function improved significantly over time, and complaints of nausea and vomiting decreased. Contact with a district nurse at baseline predicted deteriorated QoL from baseline to 6 months later. Support from grandchildren increased significantly. About 30% of the total sample deteriorated in QoL, by the significant >= 10 units, from baseline to 6-month follow-up, while about 70% remained stable in QoL from baseline. The majority of the elderly persons with cancer showed an ability to adjust to the new condition. However, in clinical practice, specific attention should be paid to the most vulnerable groups of elderly persons with cancer: those with advanced disease and decreased hope, and those with increased need of both informal and formal assistance.
|
|
| 10. |
- Esbensen, Bente Appel, et al.
(författare)
-
Quality of life of elderly persons with newly diagnosed cancer.
- 2004
-
Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 1365-2354 .- 0961-5423. ; 13:5, s. 443-453
-
Tidskriftsartikel (refereegranskat)abstract
- The aim was to investigate quality of life (QoL) in elderly persons newly diagnosed with cancer (65+ years) in relation to age, contact with the health-care system, ability to perform activities of daily living (ADL), hope, social network and support, and to identify which factors were associated with low QoL. The sample consisted of 101 patients (75 women and 26 men) newly diagnosed with cancer. EORTC QLQ-C30, Nowotny's Hope Scale, Katz ADL and the Interview Schedule for Social Interaction (ISSI) were used. The analysis was carried out in four age groups and revealed no significant differences in QoL. Compared with the other age groups, those of a high age (80+ years) more often lived alone, used more home-help service and had a smaller social network. Factors associated with low QoL were 'no other incomes than retirement pension', 'low level of hope' and 'lung cancer'. In addition, 'being told that the cancer disease has not come to an end', 'needing more help in activities of daily living', 'getting help from grown-up children' and 'needing help with PADL' were associated with low QoL. Those at risk of inferior QoL, that is, having poor economy, low level of hope and lung cancer need special attendance and specific interventions to improve QoL.
|
|
| 11. |
- Jørgensen, Tanja Schjødt, et al.
(författare)
-
Protocol for evaluating and implementing a pragmatic value-based healthcare management model for patients with inflammatory arthritis : A Danish population-based regional cohort and qualitative implementation study
- 2018
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 8:10
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction The provision of healthcare for patients with inflammatory arthritis occurs in the context of somewhat conflicting targets, values and drivers. Therefore, there is a need for introducing 'value-based healthcare' defined as the value of patient relevant health outcomes in relation to costs. This term is a central part of tomorrow's healthcare sector, especially for rheumatic diseases, yet the transition is a huge challenge, as it will impact the development, delivery and assessment of healthcare. Aims The aim of this study is to compare medical and patient evaluated impact of the traditional settlement and financing production (DAGS) controlled healthcare setting with a value-based and patient-centred adjunctive to standard care. Methods and analysis Patients with inflammatory arthritis receiving treatment in routine care at the outpatient clinics in the Capital Region of Denmark will prospectively and consecutively be enrolled in a Non-Intervention-Study framework providing a pragmatic value-based management model. A Danish reference cohort, used for comparison will be collected as part of routine clinical care. The enrolment period will be from 1 June 2018 until 31December 2023. Baseline and follow-up visits will be according to routine clinical care. Registry data will be obtained directly from patients and include personal, clinical and outcomes information. The study results will be reported in accordance with the STROBE statement. Ethics and dissemination The study has been notified to the Danish Data Protection Agency and granted authorisation for the period June 2018 to January 2025 (pending). Informed consent will be obtained from all patients before enrolment in the study. The study is approved by the ethics committee, Capital Region of Denmark (H-18013158). Results of the study will be disseminated through publication in international peer-reviewed journals.
|
|
| 12. |
- Primdahl, Jette, et al.
(författare)
-
Development of a complex Interdisciplinary Nurse-coordinated SELf-MAnagement (INSELMA) intervention for patients with inflammatory arthritis
- 2024
-
Ingår i: BMC Health Services Research. - 1472-6963. ; 24:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Apart from a consistent focus on treating inflammation, patients with inflammatory arthritis (IA) report a range of unmet needs. Many experience not only residual symptoms but also various other physical, psychological, and social effects. Therefore, this study aimed to develop a complex Interdisciplinary Nurse-coordinated self-management (INSELMA) intervention for patients with IA, as an add-on treatment to usual outpatient care for those with substantial disease impact. Methods: This study followed the British Medical Research Council’s updated framework for developing complex interventions. The process encompassed the following steps: (1) The evidence base was identified; (2) workshops were held, involving 38 relevant stakeholders (managers, physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists from hospitals and municipalities, and two patient research partners), to discuss and further develop the preliminary ideas; (3) relevant theories were identified (i.e., self-efficacy, acceptance and commitment therapy, and health literacy); (4) the intervention was modeled and remodeled and (5) the results, describing the final INSELMA intervention and outcomes. Results: The INSELMA intervention encompasses an initial biopsychosocial assessment, which is performed by a rheumatology nurse. Then, activities that the participant wishes to improve are identified and goals are set. The nurse refers the participant to a multidisciplinary team and coordinates their support and relevant services in the participant’s municipality. In addition, the health professionals have the opportunity to hold two interdisciplinary conferences during the intervention period. The participant and the health professionals work to achieve the set goals during a 6-month period, which ends with a status assessment and a discussion of further needs. The INSELMA intervention aims to increase self-management, reduce the impact of IA (e.g., pain, fatigue, sleep problems, and absenteeism), and increase self-efficacy, quality of life, mental well-being, work ability, and physical activity. Conclusions: The development of the INSELMA intervention involved stakeholders from two Danish rheumatology outpatient clinics, patient research partners and municipalities. We believe that we have identified important mechanisms to increase the self-management and quality of life of people with IA and to decrease the disease impact in those who are substantially affected. The health professionals involved have developed competences in delivering the intervention and it is ready to be tested in a feasibility study.
|
|
| 13. |
|
|
| 14. |
- Roelsgaard, Ida Kristiane, et al.
(författare)
-
The effect of an intensive smoking cessation intervention on disease activity in patients with rheumatoid arthritis : Study protocol for a randomised controlled trial
- 2017
-
Ingår i: Trials. - : Springer Science and Business Media LLC. - 1745-6215. ; 18:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Rheumatoid arthritis (RA) is a chronic, inflammatory rheumatic disease with the potential to induce significant disability. Patients with RA are at increased risk of cardiovascular diseases (CVD). Smokers with RA tend to experience more pain and fatigue, higher disease activity, more erosive joint destruction and a lower health-related quality of life (HR-QoL) than non-smokers. It remains to be determined whether these effects can be reduced by smoking cessation. This randomised controlled trial (RCT) in patients with RA aims to examine the effect of intensive smoking cessation intervention (motivational counselling combined with tailored nicotine replacement therapy) versus standard care on smoking cessation, and consequently on disease activity. Secondary objectives are to explore the effect on flare, risk factors for CVD, lung function, physical function, HR-QoL, pain and fatigue in patients with RA. Methods: This will be a multicentre, open label, two arm, parallel group, RCT, including 150 daily smokers with RA, being in remission or having low-moderate disease activity (DAS28 ≤ 5.1). The intervention group (n = 75) will receive five counselling sessions with a trained smoking cessation counsellor based on the principles of motivational counselling. Furthermore, intervention patients will be offered nicotine replacement therapy tailored to individual needs. Participants randomised to the control group will receive standard care. The co-primary outcome is a hierarchical endpoint, which will be evaluated at 3 months follow-up and will include (1) self-reported smoking cessation biochemically validated by exhaled carbon monoxide and (2) achievement of EULAR clinical response (an improvement in DAS28 of > 0.6). Follow-up visits will be performed at 3, 6 and 12 months post-intervention. Discussion: This trial will reveal whether intensive smoking cessation counselling helps smokers with RA to achieve continuous smoking cessation and whether, as a concomitant benefit, it will reduce their RA disease activity. The trial aims to generate high quality evidence for the feasibility of a health promotion intervention for smokers with RA. Trial registration: ClinicalTrials.gov, identifier: NCT02901886. Registered on 10 September 2016. Recruitment status updated on 10th October 2016.
|
|
| 15. |
- Schölin Bywall, Karin, et al.
(författare)
-
Functional capacity vs side effects : treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis
- 2021
-
Ingår i: Clinical Rheumatology. - Clinical Rheumatology : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 41:3, s. 695-704
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Individualisation of rheumatoid arthritis (RA) treatment needs to take account of individual patients’ preferences to increase patient-centeredness in treatment decisions. The aim of this study was to identify patient-relevant treatment attributes to consider when individualising treatment for patients with RA.Method: Patients with RA in Sweden were invited to rank the most important treatment attributes in an online survey (April to May 2020). Semi-structured interviews were conducted (October to November 2020) to further identify and frame potential attributes for shared decision-making. The interviews were audio-recorded, transcribed and analysed using thematic framework analysis. Patient research partners and rheumatologists supported the selection and framing of the treatment attributes across the assessment.Results: The highest ranked attributes (N = 184) were improved functional capacity, reduced inflammation, reduced pain and fatigue and the risk of getting a severe side effect. The framework analysis revealed two overarching themes for further exploration: treatment goals and side effects. ‘Treatment goals’ emerged from functional capacity, revealing two dimensions: physical functional capacity and psychosocial functional capacity. ‘Side effects’ revealed that mild and severe side effects were the most important to discuss in shared decision-making.Conclusions: Functional capacity (physical and psychosocial) and potential side effects (mild and severe) are important treatment attributes to consider when individualising RA treatment. Future research should assess how patients with RA weigh benefits and risks against each other, in order to increase patient-centeredness early on the treatment trajectory.
|
|
| 16. |
- Schölin Bywall, Karin, et al.
(författare)
-
Making space for patients’ preferences in precision medicine : a qualitative study exploring perspectives of patients with rheumatoid arthritis
- 2022
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 12:6
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment.Design: Semistructured interviews were conducted to explore patients' perspectives on a new personalised approach to RA treatment. The interview guide was developed together with patient research partners and health care professionals.Setting: An invitation to the interviews was sent through a mobile application. The interviews were one-on-one, using an interview guide with open-ended questions. Interviews were conducted digitally (October 2020-February 2021) via Zoom or telephone, depending on each participant's preferences.Participants: Patients with RA (N=12) were purposively recruited. Patients were eligible if they had an RA diagnosis, were aged 18-80 years, and understood and expressed themselves in Swedish. Participants and researchers did not know each other prior to the interviews.Results: Participants expressed desires and needs for patients to have an active role in precision medicine by making shared treatment decisions together with a healthcare professional. In order for that to work, patients need information on potential treatment options, an ability to express their preferences, an individual treatment plan and identification of personal treatment goals. Patients also identified two requirements of healthcare professional in precision medicine: a safe environment to express personal matters and two-way communication with healthcare professionals.Conclusion: Communication between patients and healthcare professionals needs to be more focused on patients' individual treatment preferences and expressed needs, in order to increase patient-centredness in treatment decisions, so shared decision-making can become a reality. More research is needed to design multifaceted implementation strategies to support patients and healthcare professionals to increase patient-centredness throughout treatment personalisation.
|
|
| 17. |
- Schölin Bywall, Karin, et al.
(författare)
-
Physical function and severe side effects matter most to patients with RA (< 5 years) : a discrete choice experiment assessing preferences for personalized RA treatment
- 2023
-
Ingår i: BMC Rheumatology. - : BioMed Central Ltd. - 2520-1026. ; 7:1
-
Tidskriftsartikel (refereegranskat)abstract
- Aim: Early assessment of patient preferences has the potential to support shared decisions in personalized precision medicine for patients with rheumatoid arthritis (RA). The aim of this study was to assess treatment preferences of patients with RA (< 5 years) with previous experience of inadequate response to first-line monotherapy. Method: Patients were recruited (March–June 2021) via four clinics in Sweden. Potential respondents (N = 933) received an invitation to answer a digital survey. The survey included an introductory part, a discrete choice experiment (DCE) and demographic questions. Each respondent answered 11 hypothetical choice questions as part of the DCE. Patient preferences and preference heterogeneity were estimated using random parameter logit models and latent class analysis models. Results: Patients (n = 182) assessed the most important treatment attributes out of physical functional capacity, psychosocial functional capacity, frequency of mild side effects and likelihood of severe side effects. In general, patients preferred a greater increase in functional capacity and decreased side effects. However, a substantial preference heterogeneity was identified with two underlying preference patterns. The most important attribute in the first pattern was the ‘likelihood of getting a severe side effect’. Physical functional capacity was the most important attribute in the second pattern. Conclusion: Respondents focused their decision-making mainly on increasing their physical functional capacity or decreasing the likelihood of getting a severe side effect. These results are highly relevant from a clinical perspective to strengthen communication in shared decision making by assessing patients’ individual preferences for benefits and risks in treatment discussions.
|
|
| 18. |
- Stahlhut, Michelle, et al.
(författare)
-
Facilitators and Barriers of Participation in “Uptime” Activities in Girls and Women With Rett Syndrome : Perspectives From Parents and Professionals
- 2019
-
Ingår i: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 29:4, s. 609-619
-
Tidskriftsartikel (refereegranskat)abstract
- Rett syndrome (RTT) is a rare neurodevelopmental disorder usually affecting females. It is associated with intellectual and multiple disabilities leading to a high level of dependency in all aspects of daily living including participation in physical activities. This study explored facilitators and barriers to “uptime” (non-sedentary) activities in Danish girls and women with RTT as perceived by parents and professionals using focus groups. Through thematic analysis, one central theme emerged: a constant balance to do the best thing for the girl or woman. Within the central theme, five subthemes of facilitators and barriers were identified relating to the individual and the physical, organizational, social, and attitudinal environments. Environmental barriers can be reduced through policy and management-level changes in health promotion and strong advocacy of physical activity by health professionals. Targeting both facilitators and barriers of “uptime” activities enables the planning and implementing of health-promoting interventions in individuals with RTT.
|
|
| 19. |
- Tegner, Heidi, et al.
(författare)
-
The effect of graded activity and pain education after lumbar spinal fusion on sedentary behavior 3 and 12 months postsurgery : A randomized controlled trial
- 2024
-
Ingår i: Archives of Physical Medicine and Rehabilitation. - 0003-9993 .- 1532-821X.
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To examine the effect of an early postsurgical intervention consisting of graded activity and pain education (GAPE) in patients with chronic low back pain (CLBP) undergoing lumbar spinal fusion (LSF) on sedentary behavior, disability, pain, fear of movement, self-efficacy for exercise and health-related quality of life (HRQoL) at 3-, 6-, and 12 months follow-up.DESIGN: A parallel-group, observer-blinded randomized controlled trial.SETTING: Department of Occupational- and Physiotherapy and the Centre for Rheumatology and Spine Diseases, Rigshospitalet, Denmark.PARTICIPANTS: In total, 144 participants undergoing an LSF for CLBP were randomly assigned to an intervention or a control group.INTERVENTIONS: The intervention group received 9 sessions of GAPE, based on principles of operant conditioning.MAIN OUTCOME MEASURES: The primary outcome was reduction in time spent in sedentary behavior, measured by an accelerometer at 3 months. The secondary outcomes were reduction in time spent in sedentary behavior at 12 months and changes from baseline to 3-, 6-, and 12 months on disability, pain, fear of movement, self-efficacy for exercise, and HRQoL.RESULTS: No difference in changes in sedentary behavior between groups was found 3 months after surgery. At 12 months after surgery, there was a significant difference between groups (mean difference: -25.4 min/d (95% confidence interval -49.1 to -1.7)) in favor of the intervention group.CONCLUSIONS: Compared with usual care, GAPE had no effect on short-term changes in sedentary behavior but GAPE had a statistical, but possibly not clinical significant effect on sedentary behavior 12 months after LSF. Further, the behavioral intervention was safe to perform.
|
|
| 20. |
- Thomé, Bibbi, et al.
(författare)
-
The meaning of having to live with cancer in old age.
- 2004
-
Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 1365-2354 .- 0961-5423. ; 13:5, s. 399-408
-
Tidskriftsartikel (refereegranskat)abstract
- Little is known about how older people with cancer experience their life situation. To increase the understanding of how illness is experienced in older people with cancer, the aim of this study was to investigate the meaning of living with cancer in old age. The hermeneutic phenomenological method as described by van Manen and referred to as 'phenomenology of praxis' was used. Ten persons (seven women and three men) aged 75 and over, who had a diagnosis of cancer and who had just completed cancer treatment, were interviewed in their own homes. The analysis revealed a life world affected to varying degrees by the cancer disease. The lived experiences across the interviews were revealed in four overarching essential themes: transition into a more or less disintegrated existence, sudden awareness of the finiteness of life, redefinition of one's role in life for good and for bad, meeting disease and illness. To provide individual support and appropriate care to older people with cancer it is important for health care professionals to identify and take care of disabilities and to support the reorientation in the disintegrated life situation. It is also important to have preparedness to meet the old person's thoughts about death. Thus, it is important to encourage the old person to describe her/his illness experience to increase understanding about what is meaningful for her/him.
|
|
