scholarly journals AB0894-HPR THE JOURNEY OF PATIENTS WITH RHEUMATOID ARTHRITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1470.2-1471
Author(s):  
M. Fusama ◽  
S. Oliver ◽  
H. Nakahara ◽  
Y. Van Eijk-Hustings ◽  
Y. Kuroe
Keyword(s):  
Rheumatoid Arthritis ◽  
Side Effects ◽  
Social Life ◽  
Life Story ◽  
Daily Life ◽  
Financial Burden ◽  
Psychological State ◽  
Self Management ◽  
Stable Phase ◽  
Management Skills

Background:The course of rheumatoid arthritis (RA) differs from patient to patient, and each patient has a unique story. The disease condition affects psychological and social aspects, greatly affecting the quality of life. The disease course is unpredictable, and each patient’s story can be seen as a lifelong journey, full of ups and downs. Therefore, it is crucial to know what kind of support is required during the course of their life.Objectives:The aim of this study is to examine the life story of patients with RA and clarify a common situation in their stories in order to consider what kind of support is needed.Methods:This is a qualitative study using life story interview for patients with RA in Japan. Interview included disease history, patients’ behaviors, effects on daily life, the patients’ perspectives regarding psychological considerations and useful support. Data were analyzed using content analysis. This study was approved by the ethics committee and informed consent was obtained.Results:Eight patients participated in this study. They were all females and the average age was 57 years old. As a result of the categorization, we extracted the following eight situations: (1) Emergence of symptom; patients thought joint pain would go away, however, the symptom did not improve and began to affect their daily life and work, (2) Choose a hospital to visit; pain and anxiety have continued and decided to visit a hospital, (3) Encounter with their doctors; patients expected their doctor to relieve their pain, while they were afraid of being told that they were suffering from a serious disease. (4) Diagnosis of RA; patients were shocked when diagnosed and anxious about what would happen and wondered why they had such a disease, (5) Choice of treatment; patients were afraid of the side effects. They wanted to make a decision discussing with their doctor, but they could not understand the explanation about drugs well and, therefore, followed the doctor’s opinion. (6) Change of treatment; a biological agent was often recommended. Patients were also worried about side effects and the financial burden. (7) Remission or stable phase; they felt better mentally too, however, they often felt anxiety about disease flare, side effect of drugs and financial burden, and (8) Flare and remission; patients felt shocked and disappointed when RA flared, and then, they noticed that patients with RA had alternating periods of relapse and remission and they had to live with RA.These interviews revealed repeated worsening and improvement of symptoms and many similar repeated psychological reactions such as anxiety, shock, denial, conflict, acceptance, giving up and relief. To cope with these fluctuating disease and mental conditions, patients were supported by educational and psychological assistance, timely consultations, social life help from nurses and support from their family. The patients considered a trusting relationship with their doctors is necessary. The patients had also realized through their experience the importance of enhancing their own abilities, such as decision-making, prevention of infections and self-management skills. Moreover, they noticed that it is important to have their own goals including hobbies and work.Conclusion:This study elucidated the common behaviors of patients with RA, the impact of RA on their psychological state and daily and social life, and the required support. The psychological condition and daily and social life also had a great influence on medical behavior. Therefore, psychosocial support and establishment of trust between healthcare professionals and patients are crucial. In addition, improving patients’ self-management skills including self-efficacy and empowerment is also necessary. As patients with RA often feel anxious in various situations and expect nurses’ support, nurses should listen to patients, pay attention to their concerns and anxieties, and show a solution-oriented attitude. In order for patients to feel at ease in their Patient Journey, nurses should sail with them while maintaining a patient-centered perspective.Disclosure of Interests:None declared

Appreciating the Predicament of Housebound Older Adults with Arthritis: Portrait of a Population

2005 ◽  
Vol 24 (1) ◽  
pp. 57-69 ◽  
Author(s):  
Kareen Nour ◽  
Sophie Laforest ◽  
Monique Gignac ◽  
Lise Gauvin
Keyword(s):  
Rheumatoid Arthritis ◽  
Older Adults ◽  
Social Life ◽  
Health Behaviours ◽  
Population Data ◽  
Living Alone ◽  
Self Management ◽  
Home Based ◽  
Behavioural Profile ◽  
Low Levels

ABSTRACTThis paper draws a socio-demographic, physical, psychosocial, and behavioural profile of housebound older adults with arthritis and compares older adults with rheumatoid arthritis to those with osteoarthritis. Data from 125 housebound older adults with osteoarthritis (65%) or rheumatoid arthritis (35%) were compared to published samples and to population data using appropriate weighting. Respondents were mainly women, living alone, mean age 77 years (SD = 10.50). Symptoms of stiffness, fatigue, and pain intensity were moderate to severe, and a substantial proportion (51.4%) reported depression. Participants reported low levels of health behaviours such as exercise. Overall, older adults with rheumatoid arthritis were significantly younger, reported less pain and limitations, were more optimistic and satisfied with their social life, and had a higher self-efficacy than older adults with osteoarthritis. Home-based pain self-management programs should be constructed considering the unique profiles and needs of this population.

Cancer Self-Management app (CanSelfMan) for supporting Self-management in children with ALL and their parents: User-Centered Design Approach (Preprint)

2021 ◽  
Author(s):  
Hamed Mehdizadeh ◽  
Farkhondeh Asadi ◽  
Hassan Emami ◽  
Azim Mehrvar ◽  
Eslam Nazemi
Keyword(s):  
Side Effects ◽  
Lymphocytic Leukemia ◽  
The Self ◽  
Reliable Information ◽  
Self Management ◽  
Accurate Information ◽  
Preliminary Evaluation ◽  
User Centered Design ◽  
Management Skills ◽  
Good Opportunity

BACKGROUND Acute lymphocytic leukemia (ALL) is the most prevalent form of pediatric cancer with numerous side effects during the treatment period. Children and their families require knowledge and information about the disease in order to control and manage these side effects. The use of mHealth provides a good opportunity for this group to receive information and education without having to visit specialists and healthcare centers, thus improving their quality of life through self-management OBJECTIVE This study aimed to develop the CanSelfMan app to empower and support children with ALL and their parents. METHODS This study was conducted in collaboration with a multidisciplinary team in six stages: 1) requirement analysis, 2) conformity assessment, 3) determining the educational content, 4) app prototyping, 5) preliminary evaluation, and 6) producing the final version. RESULTS The app comprised five main modules (ALL knowledge base, self-management skills, self-assessment report, ask a question, and reminder) that provide access to reliable information about ALL and the self-management skills required for side-effect measurement, reporting, and control. The app also improves communication between this group and the healthcare providers to help promote medication adherence through a reminder function. A web-based version of the app was also developed for Oncologists and included a dashboard for monitoring the users’ symptoms and answering their questions. CONCLUSIONS The use of mHealth can facilitate access to accurate information about cancer and its management by patients and their families. Therefore, in this study, we developed a smartphone app to address the self-management needs of children with ALL and their parents/caregivers. CanSelfMan can support these groups by providing access to reliable information, symptoms management skills, and facilitate communication between child/parents and oncologists.

EVALUATION OF THE EFECTS OF ELECTRONIC ACUPUNCTURE COMBINED WITH “TAM TY THANG” REMEDY IN THE TREATMENT OF RHEUMATOID ARTHRITIS BY WIND-COLD-DAMP

2017 ◽  
pp. 122-127
Author(s):  
Thi Luu Nguyen ◽  
Thi Tan Nguyen
Keyword(s):  
Rheumatoid Arthritis ◽  
Side Effects ◽  
Prospective Study ◽  
Key Words Rheumatoid Arthritis ◽  
Good Effect ◽  
Good Level ◽  
Relieve Pain ◽  
Level Of Activity ◽  
Before And After ◽  
The Moment

Objectives: To assess the effect of electronic acupuncture combined with “Tam ty thang” remedy in the treatment of rheumatoid arthritis by wind-cold-damp. Materials and methods: prospective study, comparing before and after treatment, including 43 patients who were diagnosed with rheumatoid arthritis by wind-cold-damp according to traditional medicine. Results: good level occupied 69,8%, and fair good level occupied 30,2%.The improved motor function accounted for 95.3%, to relieve pain up to 95,3%, reducing inflammation of VSS in 1 hour at the moment No 31,65, N28 17,88. The improvement in the level of activity of the hand reached 48,8% for good level. Conclusions: The method of electronic acupuncture combined with “Tam ty thang” remedy have a good effect in the treatment of rheumatoid arthritis by wind-cold-damp and it didn’t cause significantly side effects in clinic. Key words: rheumatoid arthritis, electronic acupuncture, “Tam ty thang” remedy

The Use of Methotrexate in Rheumatoid Arthritis

1985 ◽  
Vol 19 (5) ◽  
pp. 349-358 ◽  
Author(s):  
Peter W. Letendre ◽  
Douglas J. DeJong ◽  
Donald R. Miller
Keyword(s):  
Rheumatoid Arthritis ◽  
Clinical Trials ◽  
Folic Acid ◽  
Side Effects ◽  
Adverse Effects ◽  
Systemic Administration ◽  
Refractory Disease ◽  
Controlled Clinical Trials ◽  
Folic Acid Antagonist ◽  
Acid Antagonist

The use of methotrexate in rheumatoid arthritis is reviewed. Methotrexate, a folic acid antagonist, is sometimes employed in an attempt to symptomatically control patients whose disease does not respond adequately to conventional therapies. Systemic administration of 7.5–15 mg/wk in a “pulse” fashion appears to be effective without precipitating severe adverse effects. However, concern over potentially serious side effects and a lack of well-controlled clinical trials have limited its use to severe, refractory disease. Further studies are needed before its role in rheumatoid arthritis can justifiably be expanded.

scholarly journals AB1323-HPR A QUALITATIVE EXPLORATION OF THE PERSONAL FINANCIAL TOLL OF ARTHRITIS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1951.1-1951
Author(s):  
D. Berkovic ◽  
D. Ayton ◽  
A. M. Briggs ◽  
I. Ackerman
Keyword(s):  
Rheumatoid Arthritis ◽  
Financial Distress ◽  
Clinical Decision Making ◽  
Financial Burden ◽  
Poverty Line ◽  
Physical Symptoms ◽  
Structured Interviews ◽  
Entire Family ◽  
Working Age ◽  
Financial Impacts

Background:The financial experience faced by working-age people with arthritis includes living below the poverty line for many (1). Financial distress amongst people with arthritis is known to contribute to poorer health outcomes, including high psychological distress and more severe pain (2). Despite the demonstrated societal cost of arthritis care and management, the personal costs borne by the individual are not well understood in different health systems (3).Objectives:To explore the perceived financial impacts of living with arthritis amongst working-age individuals aged 18 – 50 years in Australia.Methods:A qualitative descriptive study design was used. Participants with inflammatory arthritis or osteoarthritis were recruited from the community, including urban and rural settings. An interview schedule was developed, informed by existing literature (4), which was piloted prior to data collection. Deductive and inductive coding techniques were used to identify financial-related themes arising from the data.Results:Semi-structured interviews were conducted with 21 younger people (90% female) with a mix of arthritis conditions including rheumatoid arthritis, psoriatic arthritis, osteoarthritis, and ankylosing spondylitis. Four themes were identified: direct arthritis-attributable medical costs, indirect arthritis-attributable costs, insurance and pension costs, and broader financial impacts on the family. Non-subsidised costs were frequently referenced by participants as burdensome, and existed even within the publically-funded healthcare system. Financial distress was characterised by participants as chronic, onerous for the entire family, and associated with exacerbation of physical symptoms.Conclusion:People with arthritis and of working age experience significant arthritis-attributable financial burden and related distress. Financial concerns should be actively identified and considered within shared clinical decision making, in order to provide more patient-centred care for these individuals.References:[1]Rios R, Zautra AJ. (2011). Socioeconomic Disparities in Pain: The Role of Economic Hardship and Daily Financial Worry. Health Psychol. 30(1) 58-66.[2]Yilmaz V, Umay E, Gundogdu I, Kaaahmet ZO, Ozturk AE. (2017). Rheumatoid Arthritis: Are psychological factors effective in disease flare? Eur J Rheumatol. 4(2) 127-132.[3]Schofield D, Rupendra S, Cunich C. Counting the Cost Part 2: Economic Costs: The current and future burden of arthritis. The University of Sydney: Arthritis Australia; 2016.[4]Ackerman IN, Kemp JL, Crossley KM, Culvenor AG, Hinman RS. (2017). Hip and Knee Osteoarthritis Affects Younger People, Too. J Orthop Sports Phys Ther. 47(2) 67-79.Disclosure of Interests:None declared

scholarly journals Tele-health interventions to support self-management in adults with rheumatoid arthritis: a systematic review

2021 ◽  
Author(s):  
Alison MacIver ◽  
Hannah Hollinger ◽  
Clare Carolan
Keyword(s):  
Rheumatoid Arthritis ◽  
Risk Of Bias ◽  
Health Interventions ◽  
Self Management ◽  
Cochrane Library ◽  
Bibliographic Databases ◽  
Published Evidence ◽  
Collection Form ◽  
Randomised Controlled

AbstractRheumatoid arthritis (RA), a long-term auto-immune condition is a challenging condition for patients to manage. Goals of treatment include reducing pain, decreasing inflammation, and improving an individual’s overall function. Increasingly technology is being utilised to support patients to self-manage their condition. The aim of this systematic narrative review was to synthesise and critically appraise published evidence concerning the effectiveness of tele-health interventions to support self-management in RA. Bibliographic databases searched from 2014 to March 2020 included MedLINE, Embase, Cochrane Library. Search strategy combined the following concepts: (1) rheumatoid arthritis, (2) tele-health interventions, and (3) self-management. Only randomised controlled trials (RCTs) involving adults with RA were included. Titles, abstracts, full-text articles were screened, any discrepancies were checked by a second reviewer. Risk of bias was assessed using Cochrane risk of bias tool and data were extracted utilising the Cochrane data collection form for RCT interventions along with the TiDier checklist. Due to high heterogeneity, results were not meta-analysed and instead data were synthesised narratively. The search identified 98 articles, seven were included. The completed RCTs varied in the nature of the interventions, duration/severity of RA, outcomes measured and effectiveness of the interventions. The completed RCTs included a total of 791 participants Disease duration was largely between 4 and 10 years and disease severity on average was moderate. There was extensive variation in intervention components, theories underpinning theories and outcomes measured. Five RCTs reported a positive effect on factors such as disease activity, medication adherence, physical activity and self-efficacy levels. This study suggests that tele-health interventions that are well-designed, tailored and multi-faceted can help to achieve positive self-management outcomes in RA. None of the studies showed evidence of harm.

scholarly journals PARE0005 INTEGRATED REFERRAL OF NEWLY DIAGNOSED RHEUMATOID ARTHRITIS PATIENT TO EDUCATION AND SUPPORT RESOURCES DELIVERED BY PATIENT LED ORGANISATION

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1288.1-1289
Author(s):  
I. Mcnicol ◽  
A. Bosworth ◽  
C. Jacklin ◽  
J. Galloway
Keyword(s):  
Rheumatoid Arthritis ◽  
Health Professional ◽  
Health Professionals ◽  
Quality Standard ◽  
Self Management ◽  
Pharmaceutical Companies ◽  
National Audit ◽  
Advisory Boards ◽  
The Right ◽  
The Impact

Background:NRAS follows best practice, evidence-based standards in all we do. Whilst huge strides have been made in the diagnosis and treatment of RA, the impact on quality of life can be significant and for many this disease remains hard to come to terms with. NRAS services and resources can improve the outcomes of people with RA/Adult JIA through a framework of supported self-management resources tailored to individual need. It is particularly important to provide the right support at the beginning of a person’s journey with RA, when unhelpful health beliefs, anxiety and incorrect information can influence how someone responds to prescribed medication and treatment thus impeding their ability to achieve the best outcomes. We know, for example, that many people do not take their medication as prescribed which reduces their chances of achieving remission or low disease activity state.Objectives:To demonstrate that by referring patients online as part of a quality improvement programme to NRAS Right Start Service, we can show improved outcomes for patients with early RA when measured by the MSKHQ. Referred patients will benefit by: a) Better understanding what RA is; b) knowing how it can affect them; c) getting the right support; d) feeling more in control; receiving a tailored pack of information that meets their personal needs; e) be able to talk to a like-minded person who has lived with RA. It’s a 4 step process which starts with the health professional referring their patient to NRAS on line. NICE Quality Standard 3 states that “Adults with rheumatoid arthritis are given opportunities throughout the course of their disease to take part in educational activities that support self-management.” Our service enables health professionals to meet their responsibilities against this national quality standard.Methods:In preparation for the introduction of this service at BSR congress 2019, an audit of the NRAS helpline service was undertaken at the end of 2018 and remains on going. Currently we have 224 responses which have been analysed against specific criteria. An Advisory Board comprising 7 clincians, from different hospitals was appointed to work with NRAS on this important research.Results:In the helpline audit, when asked ‘how concerned are you about your disease’?, alarmingly, 78% of those surveyed scored their level of concern about their disease at 7 or higher out of 10, while only 8% scored it at 5 or below. When asked about the emotional effects of their RA, 62% scored it as 7 or more where 10 was the worst possible impact. 94% of survey respondents said that they would definitely or very likely recommend NRAS and its services to another person. These results led to the development of New2RA Right Start launched in 2019, whereby health professionals across the UK can refer their patients directly to NRAS via a consented online referral which is fully GDPR compliant. To date (31stJan, 2020), we have made calls to 101 patients, from 24 referring hospitals of which 55 have been successfully completed, 34 have had information sent through the post although our helpline team were unable to speak to them, and 12 remain open. Data analysis on the service is being carried out by King’s College Hospital London, comparing the results of patients who have been referred to Right Start within the national audit who have completed a baseline and 3 month follow up MSKHQ and patients in the audit who have not participated in Right Start.Conclusion:Anecdotally, we have had a tremendous response to this service from both patients and referring health professionals. We await data from King’s on the above figures, which we will have within the next 2 months and further data, should this abstract be accepted, will be available prior to June 2020. Right Start enables health professionals to comply with QS3 above, of the NICE Quality Standards in RA, one of the key standards against which they are being audited in the NEIAA national audit. Once data and write up in a peer review journal has been published we plan to roll this service out to people with more established disease.References:[1]To be done, not included in word count.Acknowledgments:I would like to thank Ailsa Bosworth MBE, Clare Jacklin, and James GallowayDisclosure of Interests:Iain McNicol Shareholder of: GSK, Ailsa Bosworth Speakers bureau: a number of pharmaceutical companies for reasons of inhouse training, advisory boards etc., Clare Jacklin Grant/research support from: NRAS has received grants from pharmaceutical companies to carry out a number of projects, Consultant of: I have been paid a speakers fee to participate in advisory boards, in house training of staff and health professional training opportunities, Speakers bureau: Various pharma companies, James Galloway: None declared

scholarly journals Time, the deer, is in the wood: Chronotopic identities, trajectories of texts and community self-management

2020 ◽  
Vol 0 (0) ◽  
Author(s):  
Tom Bartlett
Keyword(s):  
Los Angeles ◽  
Text Analysis ◽  
Daily Life ◽  
Social Systems ◽  
Local Communities ◽  
Self Management ◽  
Policy Makers ◽  
Public Issues ◽  
Relevant Context ◽  
The Individual

AbstractThis paper opens with a problematisation of the notion of real-time in discourse analysis – dissected, as it is, as if time unfolded in a linear and regular procession at the speed of speech. To illustrate this point, the author combines Hasan’s concept of “relevant context” with Bakhtin’s notion of the chronotope to provide an analysis of Sorley MacLean’s poem Hallaig, with its deep-rootedness in space and its dissolution of time. The remainder of the paper is dedicated to following the poem’s metamorphoses and trajectory as it intertwines with Bartlett’s own life and family history, creating a layered simultaneity of meanings orienting to multiple semio-historic centres. In this way the author (pers. comm.) “sets out to illustrate in theory, text analysis and (self-)history the trajectories taken by texts as they cross through time and space; their interconnectedness with social systems at different scales; and the manner in which they are revoiced in order to enhance their legitimacy before the diverse audiences they encounter on their migratory paths.” In this process, Bartlett relates his own story to the socioeconomic concerns of the Hebridean island where his father was raised, and to dialogues between local communities and national and external policy-makers – so echoing Denzin’s call (2014. Interpretive Autoethnography (2nd Edition). Los Angeles: Sage: vii) to “develop a methodology that allows us examine how the private troubles of individuals are connected to public issues and to public responses to these troubles”. Bartlett presents his data through a range of legitimation strategies and voicing techniques, creating transgressive texts that question received notions of identity, authorship, legitimacy and authenticity in academia, the portals of power, and the routines of daily life. The current Abstract is one such example. As with the author’s closing caveat on the potential dangers of self-revelation, offered, no doubt, as a flimsy justification for the extensive focus in the paper on his own life as a chronotope, I leave it for the individual reader to decide if Bartlett’s approach is ultimately ludic or simply ludicrous.

scholarly journals FRI0048 Side effects of methotrexate in therapy for rheumatoid arthritis ? five years prospective study

2001 ◽  
Author(s):  
SK Stojanovic ◽  
AM Stankovic ◽  
JM Nedovic ◽  
BN Stamenkovic ◽  
AN Dimic
Keyword(s):  
Rheumatoid Arthritis ◽  
Side Effects ◽  
Prospective Study
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