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2.
J Evid Based Med ; 2020 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-32061121

RESUMO

The impact of reduced adherence in randomized clinical trials is well documented in the literature. Nonadherence can negatively affect the trial sample size and estimation of the treatment effect. This protocol aims to evaluate the effects of a telephone call reminder on the adherence rates of participants to interventions in a cardiovascular randomized trial. This is a study within a trial (SWAT). The host trial is evaluating the effectiveness of a multidisciplinary 16-wk cardiovascular disease prevention program on risk factor profile among patients with carotid artery stenosis. Simultaneously, this SWAT will evaluate the effectiveness of telephone call reminders on the participants' adherence to the host trial intervention. The primary outcome is adherence to the protocol of the host trial. Secondary outcomes are level of adherence, number of dropouts, and time to drop out from the host trial.

3.
J Occup Rehabil ; 2020 Feb 03.
Artigo em Inglês | MEDLINE | ID: mdl-32016649

RESUMO

Purpose Cancer survivors have strong personal desires to resume work to feel productive and meet financial needs. However, they may be faced with physical and psychological challenges. This research addresses the question: "What are the needs of cancer survivors when returning to or staying in the workforce?" by (i) examining cancer survivors' perspectives on supports needed when returning to or staying in the workforce and (ii) exploring personal and employment factors that influence the return to work process. Methods An exploratory qualitative design was used. We conducted focus groups and one-on-one semi-structured interviews with cancer survivors (n = 15). Inductive thematic analysis was used to analyze the data. Results Four key themes were identified as significant aspects of the return-to-work process for cancer survivors: (1) changing perspectives on self and work; (2) managing work and social systems; (3) determining disclosure and accommodation; and (4) the importance of supports for return to work and daily life. Conclusions There is a growing interest in developing targeted interventions to improve work outcomes for cancer survivors. This study informs cancer rehabilitation research by developing an understanding of the supports and strategies that should be implemented to help cancer survivors return to work successfully and improve quality of life.

4.
Support Care Cancer ; 2020 Jan 23.
Artigo em Inglês | MEDLINE | ID: mdl-31974768

RESUMO

PURPOSE: Adolescents and young adults (AYA) with cancer are increasingly using the internet and social media (SM) for cancer-related information. AYA face specific challenges and thus require tailored resources that meet their needs. We describe the internet and SM preferences of AYA related to their cancer information seeking behaviors and their preferences for a future resource compared to middle-aged adults (MAA). METHODS: Cancer patients completed a cross-sectional survey related to their internet and SM usage, cancer information, and preferences for future resources. Chi-square tests were used to compare AYA and MAA. RESULTS: The mean (±SD) age in the AYA group was 30±6.1 years (n = 129); in MAA 55±6.7 years (n = 157). In general, AYA preferred internet sites over SM platforms for cancer-related information and prefer a website platform over a SM platform for a new resource. Few AYA were aware of hospital-based AYA-specific resources. MAA were less likely to use SM compared with AYA (13% vs 4%, p = 0.01); however, websites and SM platforms that were used were similar between the 2 groups. Participants endorsed having already researched certain topics - yet, these were also those desired in a new resource. Compared to MAA, AYA sought more information on diet/nutrition, physical activity, exercise/fitness, fertility, sexual health, and body image (all p values < 0.05). CONCLUSION: AYA and MAA use similar resources on the internet and SM, but AYA sought information related to specific needs. Development of future resources should focus on an internet-based platform rather than a SM platform, coupled with promoting awareness of the resource.

5.
BJU Int ; 2020 Jan 24.
Artigo em Inglês | MEDLINE | ID: mdl-31977152

RESUMO

OBJECTIVE: To examine health behaviours including physical activity (PA), body mass index, diet quality, smoking and alcohol consumption, and explore their relationship with HRQoL. SUBJECTS/PATIENTS AND METHODS: Cross-sectional questionnaire packages were distributed to bladder cancer survivors (muscle-invasive (MIBC) and non-muscle invasive (NMIBC)) over the age of 18, and proficient in English. Lifestyle behaviours were measured using established measures/questions, and reported using descriptive statistics. HRQoL was assessed using the validated Bladder Utility Symptom Scale, and its association with lifestyle behaviours was evaluated using Analysis of Covariance (ANCOVA) and multivariate regression analyses. RESULTS: A total of 586 participants completed the questionnaire (52% response rate). The mean age was 67.3±10.2, and 68% were male. Twenty percent (n=117) met PA guidelines, and 22.7% (n=133) met dietary guidelines. 60.9% (n=357) were overweight/obese, and majority met alcohol recommendations (n=521, 92.5%) and were current non-smokers (n=535, 91.0%). Health behaviours did not differ between MIBC and NMIBC and cancer treatment stages. Sufficient PA, healthy diet, and non-smoking were significantly associated with HRQoL, and the number of health behaviours participants engaged in was positively associated with HRQoL (p<0.001). CONCLUSION: Bladder cancer survivors are not meeting guidelines for important lifestyle behaviours that may improve their overall HRQoL. Future research should investigate the impact of behavioural and educational interventions for health behaviours on HRQoL in this population.

6.
Nat Commun ; 11(1): 23, 2020 Jan 07.
Artigo em Inglês | MEDLINE | ID: mdl-31911620

RESUMO

Assembly of infectious influenza A viruses (IAV) is a complex process involving transport from the nucleus to the plasma membrane. Rab11A-containing recycling endosomes have been identified as a platform for intracellular transport of viral RNA (vRNA). Here, using high spatiotemporal resolution light-sheet microscopy (~1.4 volumes/second, 330 nm isotropic resolution), we quantify Rab11A and vRNA movement in live cells during IAV infection and report that IAV infection decreases speed and increases arrest of Rab11A. Unexpectedly, infection with respiratory syncytial virus alters Rab11A motion in a manner opposite to IAV, suggesting that Rab11A is a common host component that is differentially manipulated by respiratory RNA viruses. Using two-color imaging we demonstrate co-transport of Rab11A and IAV vRNA in infected cells and provide direct evidence that vRNA-associated Rab11A have altered transport. The mechanism of altered Rab11A movement is likely related to a decrease in dynein motors bound to Rab11A vesicles during IAV infection.

7.
Artigo em Inglês | MEDLINE | ID: mdl-31987846

RESUMO

We identified a novel cause of T-B+NK+ severe combined immunodeficiency due to homozygous frameshift mutation in ITPKB, demonstrating the critical role of ITPKB in human T cell development.

8.
Sci Rep ; 10(1): 1217, 2020 Jan 27.
Artigo em Inglês | MEDLINE | ID: mdl-31988327

RESUMO

The Upper Palaeolithic in Europe was a time of extensive climatic changes that impacted on the survival and distribution of human populations. During the Late Glacial Maximum (LGM), southern European peninsulas were refugia for flora, fauna, and human groups. One of these refugia, the Cantabrian region (northern Atlantic Spain), was intensively occupied throughout the Upper Palaeolithic. Characterising how climatic events were expressed in local environments is crucial to understand human and animal survival. La Riera Cave (Asturias) has a rich geo-cultural sequence dating between 20.5kyr BP to 6.5kyr BP and represents an ideal location in which to explore this. Stable isotope analysis of red deer and ibex is used alongside other environmental and climatic proxies to reconstruct Late Upper Palaeolithic conditions. Results show that during the LGM, ibex adapted their niche to survive, and became a major prey species for humans. The diverse environmental opportunities offered in the high-relief and coastal environs of La Riera may help to explain the high human population levels in the Cantabrian Region throughout the Late Upper Palaeolithic. Despite fluctuating conditions, herbivores and humans had the flexibility and resilience to adapt, demonstrating the importance of southern European refugia for the survival of different species.

9.
Clin Cancer Res ; 2020 Jan 29.
Artigo em Inglês | MEDLINE | ID: mdl-31996388

RESUMO

PURPOSE: The effectiveness of immune checkpoint inhibitors (ICIs) is limited in pancreatic ductal adenocarcinoma (PDAC). We conducted a phase I study to evaluate the safety of ICI with stereotactic body radiation therapy (SBRT) in patients with metastatic PDAC. EXPERIMENTAL DESIGN: Patients enrolled must have received at least one line of prior systemic chemotherapy for metastatic disease. Cohort A1 and A2 received durvalumab every 2 weeks plus either 8Gy in one fraction of SBRT on day 1 or 25Gy in 5 fractions on day -3 to +1. Cohort B1 and B2 received durvalumab plus tremelimumab every 4 weeks and either 8Gy in one fraction of SBRT on day 1 or 25Gy in 5 fractions on day -3 to +1. ICIs were continued until unacceptable toxicity or disease progression. The primary objective was the safety and feasibility of treatment. Objective response was assessed in lesions not subjected to SBRT. RESULTS: No dose limiting toxicities were seen. The most common adverse event was lymphopenia. Two patients achieved a partial response (one confirmed and the other unconfirmed). The overall response rate was 5.1%. Median PFS and OS was 1.7 months and 3.3 months in cohort A1; 2.5 months and 9.0 months in A2; 0.9 months and 2.1 months in B1; and 2.3 months and 4.2 months in B2. CONCLUSIONS: The combination of ICI and SBRT has an acceptable safety profile and demonstrates a modest treatment benefit in patients with metastatic PDAC.

10.
Am J Gastroenterol ; 115(1): 128-137, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31895723

RESUMO

OBJECTIVES: The prevalence of inflammatory bowel disease (IBD) is increasing. The total direct costs of IBD have not been assessed on a population-wide level in the era of biologic therapy. DESIGN: We identified all persons with IBD in Manitoba between 2005 and 2015, with each matched to 10 controls on age, sex, and area of residence. We enumerated all hospitalizations, outpatient visits and prescription medications including biologics, and their associated direct costs. Total and per capita annual IBD-attributable costs and health care utilization (HCU) were determined by taking the difference between the costs/HCU accrued by an IBD case and their controls. Generalized linear modeling was used to evaluate trends in direct costs and Poisson regression for trends in HCU. RESULTS: The number of people with IBD in Manitoba increased from 6,323 to 7,603 between 2005 and 2015. The total per capita annual costs attributable to IBD rose from $3,354 in 2005 to $7,801 in 2015, primarily driven by an increase in per capita annual anti-tumor necrosis factor costs, which rose from $181 in 2005 to $5,270 in 2015. There was a significant decline in inpatient costs for CD ($99 ± 25/yr. P < 0.0001), but not for ulcerative colitis ($8 increase ±$18/yr, P = 0.63). DISCUSSION: The direct health care costs attributable to IBD have more than doubled over the 10 years between 2005 and 2015, driven mostly by increasing expenditures on biological medications. IBD-attributable hospitalization costs have declined modestly over time for persons with CD, although no change was seen for patients with ulcerative colitis.

11.
Support Care Cancer ; 2020 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-31900621

RESUMO

PURPOSE: Aerobic exercise prescriptions in clinical populations commonly involve target intensities based on cardiopulmonary exercise tests (CPET). CPETs are often discontinued prior to a patient achieving true maximum oxygen consumption (VO2 max) which can adversely affect exercise dose and efficacy monitoring; however, reasons for early discontinuation are poorly reported. Accordingly, we explored the CPET termination reasons in persons with cancer participating in exercise intervention studies. METHODS: This study comprised of an exploratory, descriptive analysis of retrospective CPET data (VO2 and anaerobic threshold) and termination reasons in a convenience sample of people with cancer participating in exercise intervention studies in a single laboratory. CPETs were standardized using the modified Bruce treadmill protocol with expired gas collection and analysis using a metabolic cart. VO2 max was considered "met" when participants demonstrated (a) oxygen consumption plateau or (b) two of the following criteria: rating of perceived exertion ≥ 9/10, respiratory exchange ratio ≥ 1.15, and/or heart rate of 95% of age-predicted maximum. The frequency and distribution of reasons for test termination relative to the number of CPET exposures for the participants were reported. RESULTS: Forty-four participants engaged in exercise studies between February 2016 and March 2018 provided data for the analysis. Participants completed up to three CPETs during this period (total of 78 CPETs in the current analysis). Eighty-six percent of all CPETs were terminated prior to achieving VO2 max verification criteria and no tests resulted in an oxygen consumption plateau. For those that did not demonstrate achievement of VO2 max verification criteria, reasons for discontinuation were distributed as follows: equipment discomfort-49%, volitional peak-36%, and physical discomfort-14.9%. For those who met VO2 max criteria, volitional peak was the most common reason for test termination (45.5%), followed by physical discomfort (36.4%), and equipment discomfort (18.2%). CONCLUSIONS: In our sample of cancer survivors, VO2 max criteria were infrequently met with equipment discomfort being a primary reason for participant-driven test termination. Protocol and equipment considerations are necessary for interpretation and application of CPET findings in clinical practice.

12.
mSphere ; 5(1)2020 Jan 15.
Artigo em Inglês | MEDLINE | ID: mdl-31941810

RESUMO

Campylobacter jejuni is a leading cause of bacterial diarrhea worldwide and is associated with high rates of mortality and growth stunting in children inhabiting low- to middle-resource countries. To better understand the impact of breastfeeding on Campylobacter infection in infants in sub-Saharan Africa and South Asia, we examined fecal microbial compositions, bacterial isolates, and their carbohydrate metabolic pathways in Campylobacter-positive infants <1 year of age from the Global Enterics Multicenter Study. Exclusively breastfed infants with diarrhea exhibited high Campylobacter abundances, and this negatively correlated with bacterial carbohydrate metabolism. Although C. jejuni and Campylobacter coli are prevalent among these infants, the second most abundant Campylobacter species was a new species, which we named "Candidatus Campylobacter infans." Asymptomatic Campylobacter carriers also possess significantly different proportions of specific gut microbes compared to diarrheal cases. These findings provide insight into Campylobacter infections in infants in sub-Saharan Africa and South Asia and help inform strategies aimed at eliminating campylobacteriosis in these areas.IMPORTANCE Campylobacter is the primary cause of bacterial diarrhea in the United States and can lead to the development of the postinfectious autoimmune neuropathy known as Guillain-Barré syndrome. Also, drug-resistant campylobacters are becoming a serious concern both locally and abroad. In low- and middle-income countries (LMICs), infection with Campylobacter is linked to high rates of morbidity, growth stunting, and mortality in children, and breastfeeding is important for infant nutrition, development, and protection against infectious diseases. In this study, we examined the relationship between breastfeeding and Campylobacter infection and demonstrate the increased selection for C. jejuni and C. coli strains unable to metabolize fucose. We also identify a new Campylobacter species coinfecting these infants with a high prevalence in five of the seven countries in sub-Saharan Africa and South Asia examined. These findings indicate that more detailed studies are needed in LMICs to understand the Campylobacter infection process in order to devise a strategy for eliminating this pathogenic microbe.

13.
Prostate ; 80(2): 113-132, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31825540

RESUMO

INTRODUCTION: The 2019 Coffey-Holden Prostate Cancer Academy (CHPCA) Meeting, "Prostate Cancer Research: The Next Generation," was held 20 to 23 June, 2019, in Los Angeles, California. METHODS: The CHPCA Meeting is an annual conference held by the Prostate Cancer Foundation, that is uniquely structured to stimulate intense discussion surrounding topics most critical to accelerating prostate cancer research and the discovery of new life-extending treatments for patients. The 7th Annual CHPCA Meeting was attended by 86 investigators and concentrated on many of the most promising new treatment opportunities and next-generation research technologies. RESULTS: The topics of focus at the meeting included: new treatment strategies and novel agents for targeted therapies and precision medicine, new treatment strategies that may synergize with checkpoint immunotherapy, next-generation technologies that visualize tumor microenvironment (TME) and molecular pathology in situ, multi-omics and tumor heterogeneity using single cells, 3D and TME models, and the role of extracellular vesicles in cancer and their potential as biomarkers. DISCUSSION: This meeting report provides a comprehensive summary of the talks and discussions held at the 2019 CHPCA Meeting, for the purpose of globally disseminating this knowledge and ultimately accelerating new treatments and diagnostics for patients with prostate cancer.

14.
PM R ; 12(1): 55-63, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30873696

RESUMO

BACKGROUND: Urinary incontinence (UI) is an important side effect of radical prostatectomy (RP). Coactivation of surrounding muscles via novel techniques for pelvic floor rehabilitation known as Pfilates and Hypopressives has not been compared to pelvic floor muscle exercises (PFMXs) for UI. OBJECTIVE: To assess the feasibility and efficacy of isolated PFMXs with and without the addition of Pfilates and Hypopressives on UI recovery following RP. DESIGN: Randomized controlled trial. SETTING: Participants were recruited from a community and tertiary cancer center in Toronto, Canada. PARTICIPANTS: A total of 226 patients undergoing RP were assessed for eligibility. One hundred twenty-two patients were eligible and 50 consented to participate; 37 participants completed the trial. METHODS: Participants were randomized to either isolated PFMX (control) or PFMX plus Pfilates and Hypopressives (advanced pelvic floor exercises; APFX) groups. PFMX participants (n = 25) received instructions for isolated pelvic floor contractions starting with 30 contractions per day during weeks 1 to 2 up to 180 per day for weeks 7 to 26. The APFX group (n = 25) received a comparable volume of exercises. MAIN OUTCOME MEASUREMENTS: Feasibility was assessed by rates of recruitment, adverse events, and study-arm compliance. Information about UI and quality of life was collected 1 week before surgery and at 2, 6, 12, and 26 weeks after surgery. RESULTS: The recruitment rate was 41%, adherence to the PFMXs and APFXs was >70%, and there were no reported adverse events. Between-group differences were observed in the frequency of self-reported 24-hour urinary leakage (rate ratio 0.45, 95% confidence interval [CI] 0.2-0.98) and during waking hours (rate ratio 0.43, 95% CI 0.20-0.91) at 26 weeks after surgery favoring APFX. CONCLUSIONS: Pfilates and Hypopressives are feasible in men undergoing RP, and preliminary data suggest a potential benefit in aiding recovery of urinary control. Larger studies with longer follow-up are warranted. LEVEL OF EVIDENCE: II.

15.
J Autism Dev Disord ; 50(1): 319-332, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31625011

RESUMO

Writing is often difficult for individuals with autism spectrum disorder (ASD), yet relatively little literature exists that profiles specific strengths and needs within this area. This preliminary investigation compares the written language skills of adolescents with ASD without intellectual disability (n = 14) to typically developing (TD) adolescents (n = 12). Writing samples from persuasive, expository, and narrative genres were elicited. Variables of sample length, writing productivity, syntax, lexical diversity, and macrostructure were analyzed. In the persuasive and expository genres, the ASD group scored significantly lower than the TD group on sample length and some aspects of macrostructure. The ASD group scored higher than the TD group on lexical diversity in the persuasive genre. Other comparisons yielded large effect sizes but were not statistically significant.

16.
Ann Rheum Dis ; 79(1): 61-68, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31300458

RESUMO

To update the European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of chronic inflammatory arthritis (CIA) using the most up to date evidence. The EULAR standardised operating procedures were followed. A task force of rheumatologists, health professionals and patients, representing 17 European countries updated the recommendations, based on a systematic literature review and expert consensus. Higher level of evidence and new insights into nursing care for patients with CIA were added to the recommendation. Level of agreement was obtained by email voting. The search identified 2609 records, of which 51 (41 papers, 10 abstracts), mostly on rheumatoid arthritis, were included. Based on consensus, the task force formulated three overarching principles and eight recommendations. One recommendation remained unchanged, six were reworded, two were merged and one was reformulated as an overarching principle. Two additional overarching principles were formulated. The overarching principles emphasise the nurse's role as part of a healthcare team, describe the importance of providing evidence-based care and endorse shared decision-making in the nursing consultation with the patient. The recommendations cover the contribution of rheumatology nursing in needs-based patient education, satisfaction with care, timely access to care, disease management, efficiency of care, psychosocial support and the promotion of self-management. The level of agreement among task force members was high (mean 9.7, range 9.6-10.0). The updated recommendations encompass three overarching principles and eight evidence-based and expert opinion-based recommendations for the role of the nurse in the management of CIA.

17.
Artigo em Inglês | MEDLINE | ID: mdl-31862378

RESUMO

BACKGROUND: The gene AK2 encodes the phosphotransferase adenylate kinase 2 (AK2). Human variants in AK2 cause reticular dysgenesis, a severe combined immunodeficiency with agranulocytosis, lymphopenia, and sensorineural deafness that requires hematopoietic stem cell transplantation for survival. OBJECTIVE: We investigated the mechanisms underlying recurrent sinopulmonary infections and hypogammaglobulinemia in 15 patients, ranging from 3 to 34 years of age, from 9 kindreds. Only 2 patients, both of whom had mildly impaired T-cell proliferation, each had a single clinically significant opportunistic infection. METHODS: Patient cells were studied with next-generation DNA sequencing, tandem mass spectrometry, and assays of lymphocyte and mitochondrial function. RESULTS: We identified 2 different homozygous variants in AK2. AK2G100S and AK2A182D permit residual protein expression, enzymatic activity, and normal numbers of neutrophils and lymphocytes. All but 1 patient had intact hearing. The patients' B cells had severely impaired proliferation and in vitro immunoglobulin secretion. With activation, the patients' B cells exhibited defective mitochondrial respiration and impaired regulation of mitochondrial membrane potential and quality. Although activated T cells from the patients with opportunistic infections demonstrated impaired mitochondrial function, the mitochondrial quality in T cells was preserved. Consistent with the capacity of activated T cells to utilize nonmitochondrial metabolism, these findings revealed a less strict cellular dependence of T-cell function on AK2 activity. Chemical inhibition of ATP synthesis in control T and B cells similarly demonstrated the greater dependency of B cells on mitochondrial function. CONCLUSIONS: Our patients demonstrate the in vivo sequelae of the cell-specific requirements for the functions of AK2 and mitochondria, particularly in B-cell activation and antibody production.

18.
Appl Clin Inform ; 10(5): 981-990, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31875648

RESUMO

BACKGROUND: Medical errors in blood product orders and administration are common, especially for pediatric patients. A failure modes and effects analysis in our health care system indicated high risk from the electronic blood ordering process. OBJECTIVES: There are two objectives of this study as follows:(1) To describe differences in the design of the original blood product orders and order sets in the system (original design), new orders and order sets designed by expert committee (DEC), and a third-version developed through user-centered design (UCD).(2) To compare the number and type of ordering errors, task completion rates, time on task, and user preferences between the original design and that developed via UCD. METHODS: A multidisciplinary expert committee proposed adjustments to existing blood product order sets resulting in the DEC order set. When that order set was tested with front-line users, persistent failure modes were detected, so orders and order sets were redesigned again via formative usability testing. Front-line users in their native clinical workspaces were observed ordering blood in realistic simulated scenarios using a think-aloud protocol. Iterative adjustments were made between participants. In summative testing, participants were randomized to use the original design or UCD for five simulated scenarios. We evaluated differences in ordering errors, time on task, and users' design preference with two-sample t-tests. RESULTS: Formative usability testing with 27 providers from seven specialties led to 18 changes made to the DEC to produce the UCD. In summative testing, error-free task completion for the original design was 36%, which increased to 66% in UCD (30%, 95% confidence interval [CI]: 3.9-57%; p = 0.03). Time on task did not vary significantly. CONCLUSION: UCD led to substantially different blood product orders and order sets than DEC. Users made fewer errors when ordering blood products for pediatric patients in simulated scenarios when using the UCD orders and order sets compared with the original design.

19.
Artigo em Inglês | MEDLINE | ID: mdl-31841265

RESUMO

OBJECTIVES: Digital ulcers (DUs) are a major cause of disease-related morbidity and difficult to treat vascular complication of systemic sclerosis (SSc). Demonstrating treatment efficacy has traditionally focussed upon clinician assessment of DUs alone. No existing patient reported outcome (PRO) instrument captures the multi-faceted impact of SSc-DU. We report the findings of a multi-centre qualitative research study exploring the patient experience of SSc-DU. METHODS: Patient focus groups (FGs) were conducted across 3 scleroderma units, following a topic guide devised by SSc patients, experts and experienced qualitative researchers. A purposive sampling framework ensured the experiences of a diverse group of patients were captured. FGs were audio recorded, transcribed, anonymised, and analysed using inductive thematic analysis. We continued FGs until thematic saturation was achieved. RESULTS: Twenty-nine SSc patients with a history of DU disease participated in 4 FGs across the UK (Bath, Manchester and London). Five major inter-related themes (and sub-themes) were identified which encompass the patient experience of SSc-DUs: 'Disabling pain and hypersensitivity', 'Deep and broad-ranging emotional impact', 'Impairment of physical and social activity', 'Factors aggravating occurrence, duration and impact' and 'Mitigating, managing and adapting'. CONCLUSION: The patient experience of SSc-DU is multi-faceted and comprises a complex interplay of experiences associated with significant pain and morbidity. Patient experiences of SSc-DU are not captured using existing SSc-DU outcomes. Our findings shall inform the development of a novel PRO instrument to assess the severity and impact of SSc-DUs for use in future SSc-DU clinical trials.

20.
Health Expect ; 2019 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-31858677

RESUMO

BACKGROUND: Patient and staff experiences provide important insights into care quality, but health systems have difficulty using these data to improve care. Little attention has been paid to understanding how patient experience feedback can act as a prompt to reflection in practice in the clinical setting. OBJECTIVE: We aimed to identify the ways in which different types of patient experience feedback act as a trigger or prompt for engagement in reflection in clinical practice in acute hospital settings and identify important considerations for enhancing the value of patient experience data for reflective learning. METHODS: We conducted an ethnographic study in eight acute care units in three NHS hospital trusts in England, including 140 hours of observations and 45 semi-structured interviews with nursing, medical and managerial staff working in acute medical units and intensive care units. The data were analysed thematically. FINDINGS: We distinguished between formal patient experience data sources: data purposively collected and collated to capture the patient experience of care, generally at organizational level, including surveys, complaints and comments; and informal sources of feedback on the patient experience recognized by staff alongside the formal data. We also identified patient narratives as an 'in between' source of data. The impact of different types of patient feedback in triggering reflection primarily depended on the extent to which the feedback was experienced as personally relevant, meaningful and emotionally salient. DISCUSSION: Patient experience feedback is multi-faceted, but our study suggests that all types of feedback could be harnessed more effectively to prompt reflection.

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