54 research outputs found

    Doctors' understanding of individualisation of drug treatments: a qualitative interview study

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    addresses: University of Exeter Medical School, Institute of Health Services Research, Exeter, UK.notes: PMCID: PMC3657639To explore doctors' understanding of individualisation of drug treatments, and identify the methods used to achieve individualisation

    Individualisation of drug treatments for patients with long-term conditions: a review of concepts.

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    Journal ArticleOBJECTIVES: Patients and policy makers advocate that drug treatments should be individualised. However, the term is used in a variety of ways. We set out to identify the range of related terminology and concepts in the general field of individualisation, map out the relationships between these concepts and explore how patients' perspectives are considered. DESIGN: We consulted members of an established patient and public involvement group about their experience of medicine taking for long-term conditions and their ideas about individualisation. We then conducted a scoping review of the literature to explore how terms surrounding individualisation of drug treatment are used and defined in the literature, and to explore the extent to which patients' perspectives are represented, with a view to informing future recommendations as to how individualisation can be operationalised. METHODS: We identified relevant literature using a range of search strategies. Two researchers independently extracted definitions of terms using a template. Inductive and deductive methods were used to explore the data. RESULTS: Definitions were categorised according to the following themes: medical management; pharmacogenetics, the patient's perspective; interactions between the healthcare provider and patient and management of long-term conditions. CONCLUSIONS: Within the literature reviewed, the involvement of patients in the ongoing management of drug treatment was largely absent. We propose the use of a new term 'mutually agreed tailoring' (MAT). This describes the ongoing pharmacological management of conditions that incorporates patients' specific needs, experiences and existing strategies for using their medications, and the professionals' clinical judgement. This usually includes patients monitoring their symptoms and, with the support of the professional, making appropriate product, dose or timing adjustments as necessary. Our previous work suggests that many patients and doctors are successfully practising MAT, so we suggest that a formal description may facilitate wider utilisation of strategies that will improve patient outcomes.NIHR - CLAHR

    Promotion of exercise in the management of cystic fibrosis - summary of national meetings

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    This is the final version. Available from the publisher via the DOI in this recordRationale, aims and objectives: Physical activity (PA) and exercise are important in maintaining and improving health and wellbeing in people with cystic fibrosis (CF) and measures of exercise capacity are useful outcomes in monitoring disease progression. The roles and responsibilities of CF multi-disciplinary team (MDT) members in supporting PA and exercise have yet to be fully defined. This communication reports on national meetings of CF MDT staff whose interest is to improve and standardise person-centered exercise provision and testing as part of routine CF care. We also introduce the role of the physiotherapy technician in supporting PA interventions. Meetings: The two meetings covered a range of presentations, discussions and workshops, focusing on the role of exercise and PA in CF management. Forty people from 15 NHS Hospital Trusts and 3 universities were asked to provide feedback via a questionnaire. Results: The common roles and responsibilities of clinical staff involved in exercise testing and prescription are described, with a wide range of duties identified. In addition, physiotherapists were reported as the main MDT member responsible for exercise provision. The majority of teams reported discussing exercise at every clinical visit (57%) and felt confident in discussing exercise with patients (67%). Conclusions: While this report highlights the current provision of exercise in CF MDTs, it also provides insight into the resources MDTs may require in order to enhance the profile of exercise within CF services, including enhanced training, guidelines and standardised clinical roles.Royal Devon & Exeter NHS Foundation TrustUniversity of Exeter Open Innovation Link Fun

    Processes of Change in an Asthma Self-Care Intervention

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    The final version of this paper has been published in Qualitative Health Research, Vol. 23 (10), October 2013 by SAGE Publications Ltd, All rights reserved. © It is available at: http://qhr.sagepub.com/content/23/10/1419.longIn this article, we present a qualitative exploration of the psychological and communication processes that occur within an intervention to improve self-care for people with asthma. In the context of a primary-care-based trial of the intervention, we collected data at three time points for 21 patients, comprising 2 audiotaped consultations (nurse and patient together) and individual semistructured interviews 3 months after the second consultation. Using framework analysis, we identified both psychological processes (illness understanding, affective response to asthma, and reasoned motivation) and patientGÇôprovider interactions (active patient involvement and individual tailoring). We use these findings to extend and refine the pre-existing theoretical model of behavior change underpinning the intervention, in particular with relation to patientGÇôprovider interaction processes. We conclude that it is important for developers and providers of asthma self-care interventions to attend to the style of delivery as well as the behavior change techniques involved

    Promotion of physical activity for adolescents with cystic fibrosis: a qualitative study of UK multi disciplinary cystic fibrosis teams

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    Background: The Cystic Fibrosis Trust recently published a standards of care document which stated that patients should be given a physical activity (PA) programme based on their motivations, fitness, and willingness to be active. However, there remains much debate regarding the roles and responsibilities for PA promotion, as well as “optimal” recommendations and advice. This study aimed to qualitatively explore cystic fibrosis (CF) multidisciplinary teams (MDTs) advice, recommendations and practices relating to PA promotion for adolescents with CF. / Method: Semi-structured interviews were conducted with fifteen members of CF MDTs (11 physiotherapists, two dieticians and two paediatricians). Thematic analysis was used to analyse the data. / Results: Major themes identified were: (1) structure of MDTs, (2) recommendations relating to intensities, durations and types of PA, and (3) use of exercise testing. Participants reported variation between MDTs in terms of who is responsible for promoting and supporting PA, the nature of advice given to patients, and the use of exercise testing. Participants consistently lacked confidence in their own or others’ knowledge to provide standardised recommendations to patients and highlighted that PA promotion and support was often overlooked during busy periods. / Conclusions: Despite its importance, PA support and promotion is not always prioritised. MDTs lack confidence in their ability to promote PA. Standardised advice and training relating to optimal intensities, durations and types of PA would provide a baseline from which to individualise advice to each patient and could increase confidence in PA promotion among MDTs

    Promotion of exercise in the management of cystic fibrosis - summary of national meetings

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    Rationale, aims and objectives: Physical activity (PA) and exercise are important in maintaining and improving health and wellbeing in people with cystic fibrosis (CF) and measures of exercise capacity are useful outcomes in monitoring disease progression. The roles and responsibilities of CF multi-disciplinary team (MDT) members in supporting PA and exercise have yet to be fully defined. This communication reports on national meetings of CF MDT staff whose interest is to improve and standardise person-centered exercise provision and testing as part of routine CF care. We also introduce the role of the physiotherapy technician in supporting PA interventions.Meetings: The two meetings covered a range of presentations, discussions and workshops, focusing on the role of exercise and PA in CF management. Forty people from 15 NHS Hospital Trusts and 3 universities were asked to provide feedback via a questionnaire.Results: The common roles and responsibilities of clinical staff involved in exercise testing and prescription are described, with a wide range of duties identified. In addition, physiotherapists were reported as the main MDT member responsible for exercise provision. The majority of teams reported discussing exercise at every clinical visit (57%) and felt confident in discussing exercise with patients (67%).Conclusions: While this report highlights the current provision of exercise in CF MDTs, it also provides insight into the resources MDTs may require in order to enhance the profile of exercise within CF services, including enhanced training, guidelines and standardised clinical roles

    A web-based intervention to promote physical activity in adolescents and young adults with cystic fibrosis: protocol for a randomized controlled trial

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    BACKGROUND Regular participation in physical activity by people with cystic fibrosis (CF) promotes positive clinical and health outcomes including reduced rate of decline in lung function, fewer hospitalizations and greater wellbeing. However adherence to exercise and activity programs is low, in part due to the substantial daily therapy burden for young people with CF. Strict infection control requirements limit the role of group exercise programs that are commonly used in other clinical groups. Investigation of methods to promote physical activity in this group has been limited. The Active Online Physical Activity in Cystic fibrosis Trial (ActionPACT) is an assessor-blinded, multi-centre, randomized controlled trial designed to compare the efficacy of a novel web-based program (ActivOnline) compared to usual care in promoting physical activity participation in adolescents and young adults with CF. METHODS Adolescents and young adults with CF will be recruited on discharge from hospital for a respiratory exacerbation. Participants randomized to the intervention group will have access to a web-based physical activity platform for the 12-week intervention period. ActivOnline allows users to track their physical activity, set goals, and self-monitor progress. All participants in both groups will be provided with standardised information regarding general physical activity recommendations for adolescents and young adults. Outcomes will be assessed by a blinded assessor at baseline, after completion of the intervention, and at 3-months followup. Healthcare utilization will be assessed at 12 months from intervention completion. The primary outcome is change in moderate-to-vigorous physical activity participation measured objectively by accelerometry. Secondary outcomes include aerobic fitness, health-related quality of life, anxiety and depression and sleep quality. DISCUSSION This trial will establish whether a web-based application can improve physical activity participation more effectively than usual care in the period following hospitalization for a respiratory exacerbation. The web-based application under investigation can be made readily and widely available to all individuals with CF, to support physical activity and exercise participation at a time and location of the user’s choosing, regardless of microbiological status. TRIAL REGISTRATION Clinical trial registered on July 13, 2017 with the Australian and New Zealand Clinical Trials Register at (ACTRN12617001009303)

    A compositional analysis of physical activity, sedentary time, and sleep and associated health outcomes in children and adults with Cystic Fibrosis.

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    This is the final version. Available on open access from MDPI via the DOI in this record. Data Availability Statement: The datasets generated and/or analysed during the current study are not publicly available due to GDPR regulations and to protect individual privacy but are available from the corresponding author on reasonable request.This study sought to investigate the association of light physical activity (LPA), moderate-to-vigorous physical activity (MVPA), sedentary time (SED), and sleep with lung function in children and adults with CF. In total, 86 children (41 females; 13.6 ± 2.8 years; FEV1%predicted: 86 ± 1%) and 43 adults (21 females; 24.6 ± 4.7 years; FEV1%predicted: 63 ± 21%) with CF participated in this study. Wrist-worn accelerometery was used to assess PA, SED and sleep. Compositional linear regression models were conducted following normalisation via isometric log-ratio transformations. Sequential binary partitioning was applied to investigate the impact of reallocating 10 to 30 min between each behaviour on FEV1%predicted. A decline in FEV1%predicted was predicted with the reallocation of 30 min from MVPA to SED or LPA or sleep to any other behaviour in children (-3.04--0.005%) and adults (-3.58--0.005%). Conversely, improvements in FEV1%predicted were predicted when 30 min was reallocated to MVPA from LPA or SED in children (0.12-1.59%) and adults (0.77-2.10%), or when 30 min was reallocated to sleep from any other behaviour in both children (0.23-2.56%) and adults (1.08-3.58%). This study supports the importance of MVPA and sleep for maintaining and promoting lung function in people with CF.Cystic Fibrosis Trust U

    Sleep, Sedentary Time and Physical Activity Levels in Children with Cystic Fibrosis

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    This is the final version. Available on open access from MDPI via the DOI in this recordData Availability Statement: Data are not publicly available due to CGPR regulations and to protect individual privacy but are available from the corresponding author on reasonable request.The aim of this study was to compare the use of generic and cystic fibrosis (CF)-specific cut-points to assess movement behaviours in children and adolescents with CF. Physical activity (PA) was assessed for seven consecutive days using a non-dominant wrist-worn ActiGraph GT9X in 71 children and adolescents (36 girls; 13.5 ± 2.9 years) with mild CF. CF-specific and generic Euclidean norm minus one (ENMO) cut-points were used to determine sedentary time (SED), sleep, light physical activity (LPA), moderate physical activity and vigorous physical activity. The effect of using a CF-specific or generic cut-point on the relationship between PA intensities and lung function was determined. Movement behaviours differed significantly according to the cut-point used, with the CF-specific cut-points resulting in less time asleep (-31.4 min; p < 0.01) and in LPA (-195.1 min; p < 0.001), and more SED and moderate-to-vigorous PA (159.3 and 67.1 min, respectively; both p < 0.0001) than the generic thresholds. Lung function was significantly associated with LPA according to the CF-specific cut-points (r = 0.52; p = 0.04). Thresholds developed for healthy populations misclassified PA levels, sleep and SED in children and adolescents with CF. This discrepancy affected the relationship between lung function and PA, which was only apparent when using the CF-specific cut-points. Promoting LPA seems a promising strategy to enhance lung function in children and adolescents with CF.Cystic Fibrosis Trust U
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