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1.
Musculoskeletal Care ; 2021 Apr 07.
Artigo em Inglês | MEDLINE | ID: mdl-33826238

RESUMO

INTRODUCTION: An important aspect of self-management is patient activation (the skills, abilities and confidence someone uses to actively manage their health). The dominant method of capturing patient activation is the Patient Activation Measure (PAM) which has been integrated into many aspects of clinical practice in musculoskeletal care. However, limited research has investigated how rheumatology patients understand and perform patient activation, and how closely their perceptions align with the PAM. METHODS: Seventeen patients from two rheumatology departments in South West England participated in semi-structured interviews at two timepoints. They discussed how they actively managed their health and their views on the PAM. Data on activation were analysed using framework analysis and data on the PAM were analysed using content analysis. RESULTS: Participants self-managed with determination, finding ways to make small, sustainable behaviour changes and effectively navigate the healthcare system. They reported the value of knowing what self-management techniques suited them individually and reported benefitting from positive perceptions of their own health and good social support. Participants noted that the PAM did not always capture the fluctuating nature of their inflammatory arthritis and the collaborative nature of healthcare. CONCLUSIONS: Patients' perceptions and experiences of patient activation covered a wide range of skills, behaviours and beliefs. However, these are not always captured by the PAM. Therefore, its use as a clinical tool is best accompanied by dialogue with patients to understand their self-management.

2.
Radiother Oncol ; 159: 60-66, 2021 Mar 16.
Artigo em Inglês | MEDLINE | ID: mdl-33741466

RESUMO

BACKGROUND AND PURPOSE: Gynaecological brachytherapy can cause anxiety, distress and discomfort. It is not known how variation in delivery impacts women's experiences. To inform future research an online survey was carried out to identify variations in brachytherapy and support available to women receiving treatment for locally advanced cervical cancer (LACC). MATERIALS AND METHODS: An online survey was sent to 44 UK brachytherapy centres using the Qualtrics® survey platform. It included questions about brachytherapy scheduling, inpatient/day case treatment, anaesthetic/analgesia, non-pharmacological support and health professionals' opinions regarding holistic care. A mixture of closed questions with pre-specified options and open questions were employed. Descriptive statistics were generated to identify variance in UK practice. Free text responses were analysed using inductive content analysis. RESULTS: Responses were received from 39/43 eligible centres (91% response rate). Brachytherapy was predominantly given on an inpatient basis at 65% and day case at 35% of centres. Eleven scheduling regimes were reported with typical duration of brachytherapy ranging from three to 52 h. The main categories identified in response to what worked well were: 'consistency of staff'; 'good information provision' and 'experienced/skilled/senior staff'. The main categories identified as needing improvement were: 'training of different staff groups' and 'follow up and support' with many suggestions for service improvements. CONCLUSION: The survey provided a comprehensive overview of brachytherapy services for LACC demonstrating wide variability in scheduling regimes, duration of treatment and holistic care. The findings support the need to explore women's experiences with a range of treatment regimes and anaesthesia and analgesia techniques to inform improvements to future clinical care.

3.
Artigo em Inglês | MEDLINE | ID: mdl-33528002

RESUMO

OBJECTIVES: Giant cell arteritis is a large vessel vasculitis presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL6 Tocilizumab in refractory disease. The objective of this study was to explore the impact of GCA and its treatment on peoples' health related quality of life (HRQoL), to inform the development of a disease-specific patient reported outcome measure (PROM) for use in clinical trials and practice. METHODS: Participants from the UK and Australia, with biopsy- or imaging-confirmed GCA, were interviewed to identify salient aspects of HRQoL in relation to GCA and its treatment. Purposive sampling included a range of demographic and disease features (cranial, large vessel vasculitis (LVV)-GCA and visual involvement). Inductive analysis identified individual themes of importance, then domains. Candidate questionnaire items were developed from the individual themes, refined by piloting, cognitive interviews and a linguistic translatability assessment. RESULTS: Thirty six interviews were conducted to saturation with participants with GCA from the UK (25) and Australia (11). Mean age 74 years, 23 (63.9%) female, 13 (36.1%) visual loss and 5 (13.9%) LVV-GCA. Thirty-nine individual themes within five domains identified: Physical Symptoms, Activity of Daily Living (ADLs) and Function, Participation, Psychological Impact and Impact on Sense of Self and Perception of Health. Sixty-nine candidate items developed from individual themes; piloting and refinement resulted in a 40-item draft questionnaire. CONCLUSION: This international qualitative study underpins the development of candidate items for a disease specific PROM for GCA. The draft questionnaire is now ready for psychometric testing.

4.
Ann Rheum Dis ; 2020 Dec 18.
Artigo em Inglês | MEDLINE | ID: mdl-33355152

RESUMO

BACKGROUND: Non-adherence to treatment could preclude reaching an optimal outcome. Thirty to 80% of patients with rheumatic and musculoskeletal diseases (RMDs) do not adhere to the agreed treatment. OBJECTIVES: The objective was to establish points to consider (PtCs) for the prevention, screening, assessment and management of non-adherence to (non-)pharmacological treatments in people with RMDs. METHODS: An EULAR task force (TF) was established, and the EULAR standardised operating procedures for the development of PtCs were followed. The TF included healthcare providers (HCPs), comprising rheumatologists, nurses, pharmacists, psychologists, physiotherapists, occupational therapists and patient-representatives from 12 European countries. A review of systematic reviews was conducted in advance to support the TF in formulating the PtCs. The level of agreement among the TF was established by anonymous online voting. RESULTS: Four overarching principles and nine PtCs were formulated. The PtCs reflect the phases of action on non-adherence. HCPs should assess and discuss adherence with patients on a regular basis and support patients to treatment adherence. As adherence is an agreed behaviour, the treatment has to be tailored to the patients' needs. The level of agreement ranged from 9.5 to 9.9 out of 10. CONCLUSIONS: These PtCs can help HCPs to support people with RMDs to be more adherent to the agreed treatment plan. The basic scheme being prevent non-adherence by bonding with the patient and building trust, overcoming structural barriers, assessing in a blame-free environment and tailoring the solution to the problem.

5.
RMD Open ; 6(3)2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33161377

RESUMO

OBJECTIVE: To analyse how non-adherence to prescribed treatments might be prevented, screened, assessed and managed in people with rheumatic and musculoskeletal diseases (RMDs). METHODS: An overview of systematic reviews (SR) was performed in four bibliographic databases. Research questions focused on: (1) effective interventions or strategies, (2) associated factors, (3) impact of shared decision making and effective communication, (4) practical things to prevent non-adherence, (5) effect of non-adherence on outcome, (6) screening and assessment tools and (7) responsible healthcare providers. The methodological quality of the reviews was assessed using AMSTAR-2. The qualitative synthesis focused on results and on the level of evidence attained from the studies included in the reviews. RESULTS: After reviewing 9908 titles, the overview included 38 SR on medication, 29 on non-pharmacological interventions and 28 on assessment. Content and quality of the included SR was very heterogeneous. The number of factors that may influence adherence exceed 700. Among 53 intervention studies, 54.7% showed a small statistically significant effect on adherence, and all three multicomponent interventions, including different modes of patient education and delivered by a variety of healthcare providers, showed a positive result in adherence to medication. No single assessment provided a comprehensive measure of adherence to either medication or exercise. CONCLUSIONS: The results underscore the complexity of non-adherence, its changing pattern and dependence on multi-level factors, the need to involve all stakeholders in all steps, the absence of a gold standard for screening and the requirement of multi-component interventions to manage it.

6.
Rheumatol Adv Pract ; 4(2): rkaa016, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32968704

RESUMO

Objectives: CTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management support for patients in secondary care. Methods: An online survey of health professionals in the UK, including 45 multiple-choice and free-text questions, was analysed descriptively. Free-text survey responses were analysed thematically to identify health professionals' perceptions of best practice and unmet needs. Results: The online survey included 120 health professionals (34% specialist nurses, 51% doctors and 12% allied health professionals), predominantly working in rheumatology (52.9%) and nephrology (21.5%) departments. Access to self-management programmes or clinics for people with CTD or vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to 'How well is your team providing self-management support to people with CTD or vasculitis?', 38% of respondents reported 'not very well' or 'not well at all'. Direct access to psychological support was available in 76.9% of nephrology and 32.8% of rheumatology departments. More than 80% of respondents would like additional training. Key themes from the qualitative data (free-text survey responses) included the importance of: dedicated psychological support and self-management programmes for people with CTD and vasculitis, a whole-team approach (specialist teams empowering people to manage their own care), staff training (e.g. brief psychological interventions) and signposting to resources, including patient charities. Conclusion: People with CTD and vasculitis have complex needs, and improvements in self-management and psychological support are required in UK rheumatology and nephrology departments.

7.
Best Pract Res Clin Rheumatol ; 34(2): 101526, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32473780

RESUMO

Fatigue is highly prevalent in inflammatory arthritis, and people living with the symptom have described it as overwhelming and a challenge to manage. In this article, we explore the experience, impact and non-pharmacological management of fatigue from a multi-disciplinary perspective. We start by presenting qualitative evidence from people living with fatigue, including the physical, cognitive and emotional nature of the symptom and its impact on daily life. This is followed by discussion of current conceptual models of mechanisms and factors that may cause and maintain fatigue, within and between individuals. We then address the issue of fatigue measurement and modes of assessment, which is an integral aspect of management and evaluating support provision. This leads to a review of the research evidence for non-pharmacological interventions to reduce fatigue severity and impact. Finally, we consider implementation of this evidence in clinical practice and we introduce some key practical tools and techniques.

8.
Ann Rheum Dis ; 79(8): 1031-1036, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32424031

RESUMO

OBJECTIVES: In treat to target (T2T), the patient is treated to reach and maintain specified and sequentially measured goals, such as remission or low disease activity. T2T in psoriatic arthritis (PsA) has demonstrated improved clinical and patient-reported outcomes and is recommended in European guidelines. However, most clinicians do not use T2T in PsA. This study examined the barriers and enablers to implementation in practice. METHODS: Sequential mixed methods comprising a qualitative design (interviews and focus group) to inform a quantitative design (survey). Qualitative data were analysed thematically, and quantitative statistics were analysed descriptively. RESULTS: Nineteen rheumatology clinicians participated in telephone interviews or a face-to-face focus group. An overarching theme 'Complexity' (including 'PsA vs Rheumatoid Arthritis', 'Measurement' and 'Resources') and an underpinning theme 'Changes to current practice' (including 'Reluctance due to organisational factors' and 'Individual determination to make changes') were identified. 153 rheumatology clinicians responded to an online survey. Barriers included limited clinical appointment time to collect outcome data (54.5%) and lack of training in assessing skin disease (35%). Enablers included provision of a protocol (86.4%), a local implementation lead (80.9%), support in clinic to measure outcomes (83.3%) and training in T2T (69.8%). The importance of regular audit with feedback, specialist PsA clinics and a web-based electronic database linked to hospital/national information technology (IT) systems were also identified as enablers. CONCLUSIONS: Implementation of T2T in PsA requires an integrated approach to address the support, training and resource needs of individual clinicians, rheumatology teams, local IT systems and service providers to maximise success.


Assuntos
Artrite Psoriásica/tratamento farmacológico , Fidelidade a Diretrizes/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Padrões de Prática Médica , Antirreumáticos/uso terapêutico , Humanos , Reumatologistas , Reumatologia/métodos , Reumatologia/normas
9.
RMD Open ; 6(1)2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-32071281

RESUMO

With increasing recognition of the high burden and impact of psoriatic arthritis (PsA) and the growing number of therapeutic options, there has been an intensifying focus on treatment strategy in recent years. In 2015, the Tight Control of Psoriatic Arthritis study confirmed the clinical benefit of using a treat-to-target approach in PsA. This randomised controlled trial found benefits in both arthritis and psoriasis disease activity as well as lower disease impact reported by patients, although participants allocated to tight control experienced a higher rate of serious adverse events. European and international recommendations support the use of a treat-to-target approach in PsA and have offered specific advice on how to do this using outcomes such as the minimal disease activity criteria. However, implementation of this approach in routine practice is low, with real-world data highlighting undertreatment as a result. Recent qualitative work with physicians in the UK has helped researchers to understand the barriers to implementation of treat-to-target in PsA. We now need to address these barriers, provide education and support to non-specialist clinicians in routine practice, and aid the translation of optimal care to the clinic.

12.
Rheumatology (Oxford) ; 58(Suppl 5): v10-v21, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31682275

RESUMO

Fatigue in RA is prevalent, intrusive and disabling. We propose a network model of fatigue encompassing multiple and mutually interacting biological, psychological and social factors. Guided by this model, we reviewed the literature to offer a comprehensive overview of factors that have been associated with fatigue in RA. Six categories of variables were found: physical functioning, psychological functioning, medical status, comorbidities and symptoms, biographical variables and miscellaneous variables. We then systematically reviewed associations between fatigue and factors commonly addressed by rheumatology health professionals. Correlations of fatigue with physical disability, poor mental well-being, pain, sleep disturbance and depression and anxiety were ∼0.50. Mostly these correlations remained significant in multivariate analyses, suggesting partly independent influences on fatigue and differences between individuals. These findings indicate the importance of research into individual-specific networks of biopsychosocial factors that maintain fatigue and tailored interventions that target the influencing factors most relevant to that person.


Assuntos
Artrite Reumatoide/complicações , Fadiga/etiologia , Modelos Biológicos , Artrite Reumatoide/psicologia , Comorbidade , Avaliação da Deficiência , Fadiga/psicologia , Humanos , Saúde Mental , Desempenho Físico Funcional , Fatores de Risco , Transtornos do Sono-Vigília/complicações
13.
Health Technol Assess ; 23(57): 1-130, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31601357

RESUMO

BACKGROUND: Fatigue is a major problem in rheumatoid arthritis (RA). There is evidence for the clinical effectiveness of cognitive-behavioural therapy (CBT) delivered by clinical psychologists, but few rheumatology units have psychologists. OBJECTIVES: To compare the clinical effectiveness and cost-effectiveness of a group CBT programme for RA fatigue [named RAFT, i.e. Reducing Arthritis Fatigue by clinical Teams using cognitive-behavioural (CB) approaches], delivered by the rheumatology team in addition to usual care (intervention), with usual care alone (control); and to evaluate tutors' experiences of the RAFT programme. DESIGN: A randomised controlled trial. Central trials unit computerised randomisation in four consecutive cohorts within each of the seven centres. A nested qualitative evaluation was undertaken. SETTING: Seven hospital rheumatology units in England and Wales. PARTICIPANTS: Adults with RA and fatigue severity of ≥ 6 [out of 10, as measured by the Bristol Rheumatoid Arthritis Fatigue Numerical Rating Scale (BRAF-NRS)] who had no recent changes in major RA medication/glucocorticoids. INTERVENTIONS: RAFT - group CBT programme delivered by rheumatology tutor pairs (nurses/occupational therapists). Usual care - brief discussion of a RA fatigue self-management booklet with the research nurse. MAIN OUTCOME MEASURES: Primary - fatigue impact (as measured by the BRAF-NRS) at 26 weeks. Secondary - fatigue severity/coping (as measured by the BRAF-NRS); broader fatigue impact [as measured by the Bristol Rheumatoid Arthritis Fatigue Multidimensional Questionnaire (BRAF-MDQ)]; self-reported clinical status; quality of life; mood; self-efficacy; and satisfaction. All data were collected at weeks 0, 6, 26, 52, 78 and 104. In addition, fatigue data were collected at weeks 10 and 18. The intention-to-treat analysis conducted was blind to treatment allocation, and adjusted for baseline scores and centre. Cost-effectiveness was explored through the intervention and RA-related health and social care costs, allowing the calculation of quality-adjusted life-years (QALYs) with the EuroQol-5 Dimensions, five-level version (EQ-5D-5L). Tutor and focus group interviews were analysed using inductive thematic analysis. RESULTS: A total of 308 out of 333 patients completed 26 weeks (RAFT, n/N = 156/175; control, n/N = 152/158). At 26 weeks, the mean BRAF-NRS impact was reduced for the RAFT programme (-1.36 units; p < 0.001) and the control interventions (-0.88 units; p < 0.004). Regression analysis showed a difference between treatment arms in favour of the RAFT programme [adjusted mean difference -0.59 units, 95% confidence interval (CI) -1.11 to -0.06 units; p = 0.03, effect size 0.36], and this was sustained over 2 years (-0.49 units, 95% CI -0.83 to -0.14 units; p = 0.01). At 26 weeks, further fatigue differences favoured the RAFT programme (BRAF-MDQ fatigue impact: adjusted mean difference -3.42 units, 95% CI -6.44 to - 0.39 units, p = 0.03; living with fatigue: adjusted mean difference -1.19 units, 95% CI -2.17 to -0.21 units, p = 0.02; and emotional fatigue: adjusted mean difference -0.91 units, 95% CI -1.58 to -0.23 units, p = 0.01), and these fatigue differences were sustained over 2 years. Self-efficacy favoured the RAFT programme at 26 weeks (Rheumatoid Arthritis Self-Efficacy Scale: adjusted mean difference 3.05 units, 95% CI 0.43 to 5.6 units; p = 0.02), as did BRAF-NRS coping over 2 years (adjusted mean difference 0.42 units, 95% CI 0.08 to 0.77 units; p = 0.02). Fatigue severity and other clinical outcomes were not different between trial arms and no harms were reported. Satisfaction with the RAFT programme was high, with 89% of patients scoring ≥ 8 out of 10, compared with 54% of patients in the control arm rating the booklet (p < 0.0001); and 96% of patients and 68% of patients recommending the RAFT programme and the booklet, respectively, to others (p < 0.001). There was no significant difference between arms for total societal costs including the RAFT programme training and delivery (mean difference £434, 95% CI -£389 to £1258), nor QALYs gained (mean difference 0.008, 95% CI -0.008 to 0.023). The probability of the RAFT programme being cost-effective was 28-35% at the National Institute for Health and Care Excellence's thresholds of £20,000-30,000 per QALY. Tutors felt that the RAFT programme's CB approaches challenged their usual problem-solving style, helped patients make life changes and improved tutors' wider clinical practice. LIMITATIONS: Primary outcome data were missing for 25 patients; the EQ-5D-5L might not capture fatigue change; and 30% of the 2-year economic data were missing. CONCLUSIONS: The RAFT programme improves RA fatigue impact beyond usual care alone; this was sustained for 2 years with high patient satisfaction, enhanced team skills and no harms. The RAFT programme is < 50% likely to be cost-effective; however, NHS costs were similar between treatment arms. FUTURE WORK: Given the paucity of RA fatigue interventions, rheumatology teams might investigate the pragmatic implementation of the RAFT programme, which is low cost. TRIAL REGISTRATION: Current Controlled Trials ISRCTN52709998. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 57. See the NIHR Journals Library website for further project information.


Assuntos
Artrite Reumatoide/psicologia , Terapia Cognitivo-Comportamental/economia , Fadiga/prevenção & controle , Equipe de Assistência ao Paciente , Idoso , Artrite Reumatoide/enfermagem , Análise Custo-Benefício , Inglaterra , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Terapia Ocupacional , Pesquisa Qualitativa , Autorrelato , País de Gales
14.
Rheumatol Adv Pract ; 3(2): rkz022, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31528844

RESUMO

Objectives: PsA is an inflammatory condition that can cause pain, fatigue, swelling and joint stiffness. The consequences include impaired physical function, a high psychosocial burden, reduced quality of life and work disability. The presenting symptoms can be non-specific and varied, leading to delays in diagnosis or referral to specialist teams. The aim of this study was to explore patients' experiences of being diagnosed and the initial management of PsA. Methods: The study used a qualitative design, with data collected in one-to-one, face-to-face semi-structured interviews. Results: Fifteen newly diagnosed patients (<24 months) from three hospital sites in the southwest of England participated. Interviews were transcribed, anonymized and analysed using inductive thematic analysis. The following two main themes with sub-themes represent the data: symptom onset to specialist care: 'it was the blind leading the blind' (making sense of symptoms; mis-diagnosis and missed opportunities; and fast and easy access to expertise); and diagnosis as a turning point: 'having somebody say you've got something wrong with you, I was euphoric' (validation and reassurance; weighing up treatment options; taking on self-management; and acknowledging loss and change). Conclusion: Participants were already dealing with functional limitations and were highly distressed and anxious by the time they received their diagnosis. Physical and mental outcomes could be improved by the implementation of existing psoriasis management guidelines and strategies for earlier referral from primary care to rheumatology and by the development of guidelines on educational, self-management and psychological support provision soon after diagnosis.

15.
Rheumatol Adv Pract ; 3(2): rkz032, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31559382

RESUMO

Objectives: Successful, non-pharmacological research interventions are challenging to implement in clinical practice. The aim of the study was to understand the experiences of rheumatology nurses and occupational therapists (tutors) delivering a novel fatigue intervention in a trial setting, and their views on requirements for clinical implementation. After training, tutors delivered courses of a manualized group cognitive-behavioural intervention to patients with RA in a seven-centre randomized controlled trial [Reducing Arthritis Fatigue by clinical Teams using cognitive-behavioural approaches (RAFT)], which demonstrated reduced fatigue impact at 2 years. Methods: Fourteen tutors participated in interviews, and eight tutors also participated in a focus group. Data were audio-recorded, transcribed and analysed using inductive thematic analysis. Results: The following five main themes were identified: 'exciting but daunting' reflected the mixture of excitement and anxiety in intervention training and delivery; 'skills practice and demonstrations were essential' captured the value of learning and practising together, even though the process could be uncomfortable; 'an individual approach to a standardized intervention' showed how tutors negotiated adherence to the manual with delivery using their own words; 'becoming a better practitioner' described how participation enhanced tutors' wider clinical practice; and 'pragmatic and flexible' highlighted practical adaptations to facilitate training and intervention roll out. Conclusion: These insights inform strategies for clinical implementation of an evidence-based intervention that addresses a patient priority, with implications for other successful research interventions. Tutors believed that the skills acquired during RAFT enhanced their wider clinical practice, which highlights the benefits of upskilling members of clinical teams to provide self-management support to patients.

16.
Orthop Res Rev ; 11: 69-78, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31308766

RESUMO

Objectives: Total hip arthroplasty (THA) is highly successful but national registries indicate that average age has lowered and that younger patients are at higher risk of revision. Long-term follow-up of THA was historically recommended to identify aseptically failing THA, minimising the risks associated with extensive changes, but follow-up services are now in decline. A systematic review was conducted to search for evidence of the clinical or cost-effectiveness of hip arthroplasty surveillance. Methods: The study was registered with PROSPERO International Prospective Register of Systematic Reviews and conducted according to PRISMA guidelines; databases included MEDLINE and Embase, and all studies were quality assessed. Original studies (2005 to 2017) reporting follow-up of adults with THA in situ >5 years were included. Researchers extracted quantitative and qualitative data from each study. Results: For eligibility, 4,137 studies were screened: 114 studies were included in the final analysis, representing 22 countries worldwide. Data extracted included study endpoint, patient detail, loss to follow-up, revisions, scores and radiographic analysis. Six themes were derived from inductive content analysis of text: support for long-term follow-up, subgroups requiring follow-up, effect of materials/techniques on THA survival, effect of design, indicators for revision, review process. Main findings-follow-up was specifically recommended to monitor change (eg asymptomatic loosening), when outcomes of joint construct are unknown, and for specific patient subgroups. Outcome scores alone are not enough, and radiographic review should be included. Conclusion: There were no studies directly evaluating the clinical effectiveness of the long-term follow-up of THA but expert opinions from a range of international authors advocated its use for defined subgroups to provide patient-centred care. In the absence of higher level evidence, these opinions, in conjunction with emerging outputs from the national joint registries, should be used to inform services for long-term follow-up of THA.

17.
BMJ Open ; 9(3): e024338, 2019 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-30898808

RESUMO

OBJECTIVES: To identify, appraise and synthesise qualitative studies on the experience of living with rheumatoid arthritis (RA)-related fatigue. METHODS: We conducted a qualitative metasynthesis encompassing a systematic literature search in February 2017, for studies published in the past 15 years, in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, SveMed, PsychINFO and Web of Science. To be included, the studies had to report the experience of living with fatigue among adults with RA. The analysis and synthesis followed Malterud's systematic text condensation. RESULTS: Eight qualitative articles were included, based on 212 people with RA (69% women) and aged between 20 and 83 years old. The synthesis resulted in the overall theme 'A vicious circle of an unpredictable symptom'. In addition, the synthesis derived four subthemes: 'being alone with fatigue'; 'time as a challenge'; 'language as a tool for increased understanding' and 'strategies to manage fatigue'. Fatigue affects all areas of everyday life for people with RA. They strive to plan and prioritise, pace, relax and rest. Furthermore, they try to make use of a variety of words and metaphors to explain to other people that they experience that RA-related fatigue is different from normal tiredness. Despite this, people with RA-related fatigue experience feeling alone with their symptom and they develop their own strategies to manage fatigue in their everyday life. CONCLUSIONS: The unpredictability of RA-related fatigue is dominant, pervasive and is experienced as a vicious circle, which can be described in relation to its physical, cognitive, emotional and social impact. It is important for health professionals to acknowledge and address the impact of fatigue on the patients' everyday lives. Support from health professionals to manage fatigue and develop strategies to increase physical activity and maintain work is important for people with RA-related fatigue.


Assuntos
Adaptação Psicológica/fisiologia , Artrite Reumatoide/complicações , Artrite Reumatoide/fisiopatologia , Fadiga/complicações , Fadiga/fisiopatologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Artrite Reumatoide/psicologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida
18.
Patient ; 12(4): 437, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30903548

RESUMO

The Open Access license, which previously read.

19.
Ann Rheum Dis ; 78(4): 465-472, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30793700

RESUMO

OBJECTIVES: To see if a group course delivered by rheumatology teams using cognitive-behavioural approaches, plus usual care, reduced RA fatigue impact more than usual care alone. METHODS: Multicentre, 2-year randomised controlled trial in RA adults (fatigue severity>6/10, no recent major medication changes). RAFT (Reducing Arthritis Fatigue: clinical Teams using CB approaches) comprises seven sessions, codelivered by pairs of trained rheumatology occupational therapists/nurses. Usual care was Arthritis Research UK fatigue booklet. Primary 26-week outcome fatigue impact (Bristol RA Fatigue Effect Numerical Rating Scale, BRAF-NRS 0-10). Intention-to-treat regression analysis adjusted for baseline scores and centre. RESULTS: 308/333 randomised patients completed 26 week data (156/175 RAFT, 152/158 Control). Mean baseline variables were similar. At 26 weeks, the adjusted difference between arms for fatigue impact change favoured RAFT (BRAF-NRS Effect -0.59, 95% CI -1.11 to -0.06), BRAF Multidimensional Questionnaire (MDQ) Total -3.42 (95% CI -6.44 to -0.39), Living with Fatigue -1.19 (95% CI -2.17 to -0.21), Emotional Fatigue -0.91 (95% CI -1.58 to -0.23); RA Self-Efficacy (RASE, +3.05, 95% CI 0.43 to 5.66) (14 secondary outcomes unchanged). Effects persisted at 2 years: BRAF-NRS Effect -0.49 (95% CI -0.83 to -0.14), BRAF MDQ Total -2.98 (95% CI -5.39 to -0.57), Living with Fatigue -0.93 (95% CI -1.75 to -0.10), Emotional Fatigue -0.90 (95% CI -1.44, to -0.37); BRAF-NRS Coping +0.42 (95% CI 0.08 to 0.77) (relevance of fatigue impact improvement uncertain). RAFT satisfaction: 89% scored > 8/10 vs 54% controls rating usual care booklet (p<0.0001). CONCLUSION: Multiple RA fatigue impacts can be improved for 2 years by rheumatology teams delivering a group programme using cognitive behavioural approaches. TRIAL REGISTRATION NUMBER: ISRCTN52709998.


Assuntos
Artrite Reumatoide/complicações , Terapia Cognitivo-Comportamental/métodos , Fadiga/terapia , Adaptação Psicológica , Adulto , Idoso , Artrite Reumatoide/psicologia , Emoções , Fadiga/etiologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Satisfação do Paciente , Autocuidado/métodos , Índice de Gravidade de Doença , Classe Social , Resultado do Tratamento
20.
BMJ Open ; 9(1): e026793, 2019 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-30705244

RESUMO

INTRODUCTION: Fatigue remains pervasive, disabling and challenging to manage across all inflammatory rheumatic diseases (IRDs). Non-pharmacological interventions, specifically cognitive-behavioural approaches (CBAs) and graded exercise programmes designed to support and increase exercise, are valuable treatments which help patients with IRD to manage their fatigue. Yet, healthcare systems have encountered substantial barriers to the implementation of these therapeutic options. Lessening the Impact of Fatigue in Inflammatory Rheumatic Diseases: a Randomised Trial (LIFT) is designed to give insights into the effectiveness of a remotely delivered standardised intervention for a range of patients with IRD. It will also enable the exploration of putative moderating factors which may allow for the future triage of patients and to investigate the precise mediators of treatment effect in IRD-related fatigue. METHODS AND ANALYSIS: LIFT is a pragmatic, multicentre, three-arm randomised, controlled trial, which will test whether adapted CBA and personalised exercise programme interventions can individually reduce the impact and severity of fatigue. This will be conducted with up to 375 eligible patients diagnosed with IRD and interventions will be delivered by rheumatology healthcare professionals, using the telephone or internet-based audio/video calls. ETHICS APPROVAL AND DISSEMINATION: Ethical approval has been granted by Wales REC 7 (17/WA/0065). Results of this study will be disseminated through presentation at scientific conferences and in scientific journal. A lay summary of the results will be sent to participants. TRIAL REGISTRATION NUMBER: NCT03248518; Pre-results.


Assuntos
Terapia Cognitivo-Comportamental/métodos , Terapia por Exercício/métodos , Fadiga/terapia , Febre Reumática/terapia , Análise Custo-Benefício , Humanos , Estudos Multicêntricos como Assunto , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Febre Reumática/fisiopatologia , Índice de Gravidade de Doença
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