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1.
Digit Health ; 10: 20552076241232949, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38410792

RESUMEN

Objective: This study explored patient and caregiver expectations and experiences of virtual primary care in Manitoba, Canada. This study focused on accessibility of care, acceptability and perceptions of quality from 'users' of primary healthcare services. Due to the rapid implementation of virtual primary care during the COVID-19 pandemic in Canada, patient/public input was largely bypassed. Methods: A mixed method was conducted in collaboration with Patient and Caregiver Community Advisors. Data was obtained from 696 surveys and 9 focus groups (n = 41 patients and caregivers). Results: Data suggest good acceptance of virtual visits, although considered a new experience despite almost exclusive use of the telephone. Participants preferred more input for choosing the type of visit but experienced less stress, time and inconvenience by using virtual care. There were mixed opinions of quality. More complex visits were associated with incomplete consultations and serve as one exemplar of the limitations due to lack of physical presence or contact. Unique communication skills were required to convey health concerns adequately and accurately. A more transactional approach was perceived from the lack of visual cues and the awkwardness associated with pauses during the phone conversation. Virtual care may be better used for certain circumstances but should encompass patient-centred decision making for when and how. Many expressed interests in video options; technology access and user ability are additional considerations for advancing virtual care. Conclusions: The experiences and recommendations from patients and caregivers provide an important contribution to decision-making and integrating and sustaining quality virtual care for patient-centered healthcare service delivery. Keywords: Virtual care experiences, primary care, patient-oriented research, mixed methods, COVID-19.

2.
Disabil Rehabil ; : 1-15, 2023 Oct 06.
Artículo en Inglés | MEDLINE | ID: mdl-37800442

RESUMEN

PURPOSE: Unaddressed hearing loss can adversely affect employment and day-to-day work-life. Efficient and effective audiology support can help optimise hearing in the workplace. This study explores the audiological rehabilitation experiences of workers with hearing loss (WHL). MATERIALS AND METHODS: Twenty-four WHL with experience of a wide range of audiology services across the UK participated in semi-structured interviews. Interviews were analysed using inductive thematic analysis. RESULTS: Three main themes were generated: Theme 1: mixed experiences with audiology services (subdivided into two subthemes and four sub-subthemes). Theme 2: audiology role in work support (subdivided into three subthemes). Theme 3: "I think support could be improved if…" (subdivided into two subthemes). CONCLUSION: The audiological rehabilitation for working-age adults with hearing loss needs improvements to deliver sufficient support and quality care. Some of the barriers to having better-functioning hearing healthcare require fundamental standards in healthcare quality, such as access to services, staff (including audiologists) deaf awareness, information and technology support, and personalised care that considers work-life needs. Further research is required to evaluate the feasibility and cost-effectiveness of improvements, such as support that extends beyond hearing aid care, whether from audiology or non-audiology services.


Workers with hearing loss need audiologists' support to address their work life needs beyond hearing-aids care.Improving audiologists' competencies, audiology departments' efficiency and developing relevant resources may promote better healthcare for workers with hearing loss.Audiologists, employers, workers, and the healthcare system need to collaborate in developing person-centred solutions to sufficiently assist workers with hearing loss.

3.
BMJ Open ; 13(4): e073415, 2023 04 28.
Artículo en Inglés | MEDLINE | ID: mdl-37117002

RESUMEN

OBJECTIVES: Screening for prostate cancer in healthy asymptomatic men using the prostate-specific antigen (PSA) test is controversial due to conflicting recommendations from and a lack of strong evidence regarding the benefit of population-based screening. In Canada and internationally, there is variability in how family physicians (FPs) approach PSA testing in asymptomatic men. The purpose of our study was to explore how family FPs approach discussions with their male patients around PSA testing in Manitoba, Canada. DESIGN: Qualitative descriptive study. SETTING AND PARTICIPANTS: High-ordering and median-ordering FPs were invited to participate in an interview. In addition to exploring practice behaviours around PSA testing, participants were asked to elaborate on their typical discussion with asymptomatic men who request a PSA test or other tests and procedures that they do not feel are clinically warranted. Data were analysed inductively using a constant-comparison approach. RESULTS: There were important variations between high-ordering and median-ordering FP's approaches to discussing PSA testing. Strategies to facilitate conversations were more frequently identified by median-ordering physicians and often included methods to facilitate assessing their patient's understanding and values. In addition to decision aids, median-ordering FPs used motivational interviewing to tailor a discussion, organised their practice structure and workflow habits in a way that enhanced patient-provider discussions and leveraged 'new' evidence and other aids to guide conversations with men. CONCLUSION: We found that high-ordering FPs tended to use the PSA test for screening asymptomatic men with limited shared decision-making. Median-ordering FPs used conversational strategies that emphasised uncertainty of benefit and potential risk and did not present the test as a recommendation.


Asunto(s)
Antígeno Prostático Específico , Neoplasias de la Próstata , Humanos , Masculino , Antígeno Prostático Específico/análisis , Médicos de Familia , Detección Precoz del Cáncer/métodos , Tamizaje Masivo/métodos , Neoplasias de la Próstata/diagnóstico , Neoplasias de la Próstata/prevención & control
4.
Psychol Psychother ; 96(1): 148-171, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36314962

RESUMEN

PURPOSE: Practising compassion increases well-being and reduces depression, anxiety, and psychological distress among clinical and non-clinical populations. There is a rapid increase in compassion-based interventions within the past two decades. However, the reviews are limited to predominantly Western cultures. Therefore, this meta-analysis aimed to evaluate the literature attempting to promote and increase compassion in Asian communities. METHOD: Eight randomised controlled trials (RCTs) conducted between 2016 to 2021 were included in the meta-analysis with data from 1012 participants across Thailand, Japan, China and Hong Kong. Effect sizes were calculated to test the efficacy of the compassion-based interventions on the self-compassion outcome. Intervention efficacy was tested by comparing the intervention groups against control groups (wait-list control and active control groups) at pre- and post-interventions. RESULTS: Significant between-group differences in change scores were found on self-report measures of self-compassion with large effect sizes in interventions with wait-list control groups (d = .86) and small effect sizes in interventions with active-control groups (d = .19). CONCLUSIONS: Although compassion-based interventions are heterogeneous in nature and limited in scope, there is promising evidence of improving self-compassion in Asian communities. This supports for the cross-cultural applicability of compassion-based interventions. However, research within the Asian context is limited and at an infancy stage, signifying the importance of conducting further compassion-based interventions in clinical and non-clinical groups living in the Asian communities.


Asunto(s)
Ansiedad , Empatía , Humanos , Trastornos de Ansiedad , China , Japón
5.
Mindfulness (N Y) ; 14(2): 429-447, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36575653

RESUMEN

Objectives: Compassionate Mind Training (CMT) is a therapeutic approach proven to be effective for reducing distress and increasing well-being in clinical and non-clinical populations. This study aimed to explore the efficacy of a short-term, online version of the CMT on compassion, distress, and well-being in a cross-cultural, non-clinical sample of Sri Lankan and UK people. Method: A randomized controlled trial with pre-, post-measurements, and a 2-week follow-up was conducted using CMT (n = 21 Sri Lankan, n = 73 UK) and wait-list control (n = 17 Sri Lankan, n = 54 UK) groups. The intervention effects were investigated using a series of repeated-measures ANOVAs using intention-to-treat and per-protocol analyses. Results: The 2-week CMT was effective in increasing all aspects of compassion in both Sri Lankan and UK people. In addition, some cross-cultural similarities and differences (in the factors affecting compassion) were present in the improvements following CMT between the two countries, which were maintained at a 2-week follow-up. Conclusion: This study provides promising evidence for the efficacy and cross-cultural applicability of CMT for reducing distress and increasing well-being.

6.
BMC Prim Care ; 23(1): 320, 2022 12 10.
Artículo en Inglés | MEDLINE | ID: mdl-36496379

RESUMEN

BACKGROUND: In March 2020, Canada implemented restrictions to curb viral transmission of COVID-19, which resulted in abrupt disruptions to conventional (in-person) clinical care. To retain continuity of care the delivery of primary care services shifted to virtual care. This study examined the nature of virtual visits, characterizing the use and users of virtual care in primary care settings from March 14/20 to June 30/20 of the COVID-19 pandemic.  METHODS: Retrospective cohort study of primary care providers in Manitoba, Canada that participate in the Manitoba Primary Care Research Network (MaPCReN) and offered ≥ 1 virtual care visit between 03/14/20 and 06/30/20 representing 142,616 patients. Tariff codes from billing records determined the visit type (clinic visit, virtual care). Between 03/14/20, and 06/30/20, we assessed each visit for a follow-up visit between the same patient and provider for the same diagnosis code. Patient (sex, age, comorbidities, visit frequency, prescriptions) and provider (sex, age, clinic location, provider type, remuneration, country of graduation, return visit rate) characteristics describe the study population by visit type. Generalized estimating equation models describe factors associated with virtual care.  RESULTS: There were 146,372 visits provided by 154 primary care providers between 03/14/20 and 06/30/20, of which 33.6% were virtual care. Female patients (OR 1.16, CI 1.09-1.22), patients with ≥ 3 comorbidities (OR 1.71, CI 1.44-2.02), and patients with ≥ 10 prescriptions (OR 2.71, 2.2-1.53) had higher odds of receiving at least one virtual care visit compared to male patients, patients with no comorbidities and patients with no prescriptions. There was no significant difference between the number of follow-up visits that were provided as a clinic visit compared to a virtual care visit (8.7% vs. 5.8%) (p = 0.6496). CONCLUSION: Early in the pandemic restrictions, approximately one-third of visits were virtual. Virtual care was utilized by patients with more comorbidities and prescriptions, suggesting that patients with chronic disease requiring ongoing care utilized virtual care. Virtual care as a primary care visit type continues to evolve. Ongoing provision of virtual care can enhance quality, patient-centered care moving forward.


Asunto(s)
COVID-19 , Telemedicina , Humanos , Masculino , Femenino , COVID-19/epidemiología , Pandemias , Telemedicina/métodos , Estudios Retrospectivos , Atención Dirigida al Paciente
7.
Br J Pain ; 16(3): 341-353, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35646337

RESUMEN

Background: Chronic pain in young people is prevalent in the UK. Young people are digital natives, yet there has not been any online intervention developed in a UK context to help them manage chronic pain. Key to understanding the context in which young people engage with online interventions is better understanding their internet use for chronic pain management. The overarching aim of this study was to explore young peoples' experiences of searching for information about chronic pain using the internet. This included experiences of using search engines (e.g. Google), health information websites (e.g. the National Health Service [NHS] website) and social media (e.g. Facebook and Instagram). Methods: Semi-structured interviews were conducted with young people aged 16-24-years (n = 24), online, via Microsoft (MS) Teams. The study was advertised online and via patient partner charities. Interview data was analysed using reflexive thematic analysis. Results: Participants presented with a variety of chronic pain conditions, including joint hypermobility syndrome (n = 6), chronic headache and/or migraine (n = 4) and fibromyalgia (n = 3). Four themes were generated: 'Trustworthy information, or experiences?', 'Diagnostic labels in a digital world', 'The online chronic pain community' and 'A mind and body approach to self-management'. Young people trust advice from others in their online community and having a diagnostic label help them find relevant pain management strategies and support networks online. Conclusions: This study is the first qualitative exploration of internet use in UK-based young people with chronic pain. Findings highlight the importance of considering internet use when developing new online interventions for young people with pain and that internet use, particularly social media use, is an important psychosocial consideration in pain management. Young people should be encouraged to verify practical pain management techniques found online with their doctor and be empowered in the safe use of appropriate psychology-based self-management resources.

8.
Glob Ment Health (Camb) ; 9: 99-110, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36618730

RESUMEN

Background: Practising compassion has shown to increase well-being and reduce distress in people across cultures. However, very little research has explored cultural differences in different facets of compassion with a dearth of research evident especially in the Asian context. Several inhibitors and facilitators of compassion have been identified although the nuances of cultural differences of these remain unexploited. This study aimed to discover cross-cultural similarities and differences of the levels of compassion, facilitators and inhibitors of compassion between Sri Lankan and UK people. Methods: A cross-sectional, questionnaire-based quantitative research was conducted among 149 Sri Lankan and 300 UK participants. Individual predictors (such as fears of compassion, self-reassurance, external shame, social safeness and pleasure, depression and anxiety) were also explored in relation to compassion, compassion to others, and compassion from others in each group. Results: The results indicated that Sri Lankan participants were more self-reassured and self-compassionate and self-identifying as a Buddhist predicted higher self-compassion, when compared to UK participants. However, Sri Lankan participants reported higher levels of external shame and fear of compassion not just towards themselves, but also towards and from others, indicating difficulty in engaging compassionately with others. In contrast, UK participants reported higher social safeness, indicating that they were more likely to feel safe and soothed by the society than the Sri Lankan participants. Conclusions: Society plays a pivotal role in shaping one's experiences of compassion. This study suggests that specific cultural and social factors should be considered when implementing Western compassionate approaches to non-Western settings.

9.
Disabil Rehabil ; 44(25): 7861-7871, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-34817312

RESUMEN

PURPOSE: This study explored audiologists' perspectives regarding their interactions with workers with hearing loss (WHL). MATERIALS AND METHODS: Semi-structured interviews were conducted with twenty-five audiologists working in the National Health Service (NHS) and independent companies (IC) in the UK and were thematically analysed. RESULTS: The developed themes and sub-themes (shown in parenthesis) are (1) Current practices and routines (Same approach for most patients; Variations between hearing care services; Audiologists' personal experience of hearing loss) (2) Perceived challenges (Non-routine and challenging cases; The role of hearing technology; Concerns about lack of awareness and knowledge; Communication difficulties between services, Limited funding and resources) (3) Scope for better support (Would like to be informed; Other potential service improvements). CONCLUSIONS: This study revealed that audiologists' perceived deficiencies in the hearing rehabilitation for WHL and identified ways to improve it. Key priorities for improvement were found to include addressing audiologists' informational and training needs, facilitating WHLs' access to appointments, improving communication between services, raising awareness in the workplace, developing relevant resources and extending funding for provision of longer appointments and hearing technologies. This is the first time this information has been reported in the literature. Opportunities for conducting further research in this area are suggested.Implications for rehabilitationWorkers with hearing loss face many challenges in work life and have the option of audiologic rehabilitation to alleviate their difficulties and improve their wellbeing; however, this study suggests that workers' audiological care needs improvements.Audiologists should assess and consider patients' work needs and psychosocial concerns in consultations to provide personalised care.Audiology educational programmes, services, and the healthcare system can assist audiologists in helping workers with hearing loss by providing updated knowledge, continuous training and improved interprofessional communication and patients' access to useful resources.


Asunto(s)
Audiólogos , Pérdida Auditiva , Humanos , Audiólogos/psicología , Medicina Estatal , Pérdida Auditiva/rehabilitación , Audición , Actitud del Personal de Salud
10.
PLoS One ; 16(11): e0260475, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34818344

RESUMEN

Practicing compassion has shown to reduce distress and increase emotional well-being in clinical and non-clinical populations. The existing research is primarily focused on Western populations although the concepts of compassion are heavily influenced by Asian Buddhist views. There is a dearth of compassion research conducted particularly in the Asian context. Therefore, this study aimed to explore the views and lived experiences of compassion in Sri Lankan students, to understand whether compassion is a socially embraced construct in Sri Lanka, considering that Sri Lanka is a Buddhist influenced society. Participants' views and lived experiences of compassion towards themselves and to/from others were also investigated, with a specific focus on their perceived inhibitors and facilitators of compassion. Aims were set to identify whether Western compassion-based practices could be successfully applied to Asian societies such as Sri Lanka. An Interpretative Phenomenological Analysis approach was used to obtain and analyse qualitative data from a convenience sample of 10 Sri Lankan students, recruited from a Psychology course. The phenomenological analysis of the semi-structured face-to-face interviews elicited three predominant themes: What compassion means to me, what I make of it, and compassion through facilitators and inhibitors. The findings suggested that participants shared a similar understanding of the concept of compassion as reflected in the Western definitions. Experiences and views of compassion were shaped by several factors including religion, culture, society, and upbringing. In general, this study revealed that participants were well aware of the concept of compassion as well as its impact on their psychological well-being. Despite this, inhibitors existed in experiencing compassion. The religious and collectivistic-cultural influences need to be further explored and taken into account when implementing Western compassion-based practices to non-Western contexts such as Sri Lanka.


Asunto(s)
Budismo , Empatía , Adulto , Cultura , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Sri Lanka , Estudiantes , Adulto Joven
11.
Clin Orthop Relat Res ; 479(10): 2151-2166, 2021 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-34288899

RESUMEN

BACKGROUND: Patient-reported outcome measures (PROMs) are validated questionnaires that are completed by patients. Arthroplasty registries vary in PROM collection and use. Current information about registry collection and use of PROMs is important to help improve methods of PROM data analysis, reporting, comparison, and use toward improving clinical practice. QUESTIONS/PURPOSES: To characterize PROM collection and use by registries, we asked: (1) What is the current practice of PROM collection by arthroplasty registries that are current or former members of the International Society of Arthroplasty Registries, and are there sufficient similarities in PROM collection between registries to enable useful international comparisons that could inform the improvement of arthroplasty care? (2) How do registries differ in PROM administration and demographic, clinical, and comorbidity index variables collected for case-mix adjustment in data analysis and reporting? (3) What quality assurance methods are used for PROMs, and how are PROM results reported and used by registries? (4) What recommendations to arthroplasty registries may improve PROM reporting and facilitate international comparisons? METHODS: An electronic survey was developed with questions about registry structure and collection, analysis, reporting, and use of PROM data and distributed to directors or senior administrators of 39 arthroplasty registries that were current or former members of the International Society of Arthroplasty Registries. In all, 64% (25 of 39) of registries responded and completed the survey. Missing responses from incomplete surveys were captured by contacting the registries, and up to three reminder emails were sent to nonresponding registries. Recommendations about PROM collection were drafted, revised, and approved by the International Society of Arthroplasty Registries PROMs Working Group members. RESULTS: Of the 25 registries that completed the survey, 15 collected generic PROMs, most frequently the EuroQol-5 Dimension survey; 16 collected joint-specific PROMs, most frequently the Knee Injury and Osteoarthritis Outcome Score and Hip Disability and Osteoarthritis Outcome Score; and 11 registries collected a satisfaction item. Most registries administered PROM questionnaires within 3 months before and 1 year after surgery. All 16 registries that collected PROM data collected patient age, sex or gender, BMI, indication for the primary arthroplasty, reason for revision arthroplasty, and a comorbidity index, most often the American Society of Anesthesiologists classification. All 16 registries performed regular auditing and reporting of data quality, and most registries reported PROM results to hospitals and linked PROM data to other data sets such as hospital, medication, billing, and emergency care databases. Recommendations for transparent reporting of PROMs were grouped into four categories: demographic and clinical, survey administration, data analysis, and results. CONCLUSION: Although registries differed in PROM collection and use, there were sufficient similarities that may enable useful data comparisons. The International Society of Arthroplasty Registries PROMs Working Group recommendations identify issues that may be important to most registries such as the need to make decisions about survey times and collection methods, as well as how to select generic and joint-specific surveys, handle missing data and attrition, report data, and ensure representativeness of the sample. CLINICAL RELEVANCE: By collecting PROMs, registries can provide patient-centered data to surgeons, hospitals, and national entities to improve arthroplasty care.


Asunto(s)
Artroplastia , Medición de Resultados Informados por el Paciente , Mejoramiento de la Calidad , Humanos , Encuestas y Cuestionarios
12.
NPJ Prim Care Respir Med ; 29(1): 37, 2019 10 21.
Artículo en Inglés | MEDLINE | ID: mdl-31636268

RESUMEN

Asthma is a common non-communicable disease, often characterized by activity limitation, negative effects on social life and relationships, problems with finding and keeping employment, and poor quality of life. The objective of the present study was to conduct a systematic review of the literature investigating the potential factors impacting quality of life (QoL) in asthma. Electronic searches were carried out on: MEDLINE, EMBASE, PsycINFO, the Cochrane Library, and Web of Science (initial search April 2017 and updated in January 2019). All primary research studies including asthma, psychological or physical health factors, and quality of life were included. Narrative synthesis was used to develop themes among findings in included studies in an attempt to identify variables impacting QoL in asthma. The search retrieved 43 eligible studies that were grouped in three themes: psychological factors (including anxiety and depression, other mental health conditions, illness representations, and emotion regulation), physical health factors (including BMI and chronic physical conditions), and multifactorial aspects, including the interplay of health and psychological factors and asthma. These were found to have a substantial impact on QoL in asthma, both directly and indirectly, by affecting self-management, activity levels and other outcomes. Findings suggest a complex and negative effect of health and psychological factors on QoL in asthma. The experience of living with asthma is multifaceted, and future research and intervention development studies should take this into account, as well as the variety of variables interacting and affecting the person.


Asunto(s)
Asma/psicología , Ejercicio Físico/fisiología , Estado de Salud , Calidad de Vida , Adulto , Asma/fisiopatología , Humanos
13.
Clin Rehabil ; 33(7): 1139-1149, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-30813767

RESUMEN

OBJECTIVE: Explore qualitative differences between interventions (DVD and booklet (DVDB) versus face-to-face and booklet (F2FB) versus usual care) in the BREATHE (Breathing Retraining for Asthma Trial of Home Exercises) trial of breathing retraining for asthma. DESIGN: Quantitative process analysis exploring group expectancy, experience and practice before and after intervention delivery for the main trial. SETTING: Primary care. SUBJECTS: Adults with asthma (DVD and booklet, n = 261; F2FB, n = 132). MAIN MEASURES: Baseline - expectancy about breathing retraining; follow-up 3, 6 and 12 months - self-efficacy, treatment experience (enjoyment of treatment, perceptions of physiotherapist, perceptions of barriers), amount of practice (weeks, days/week, times/day), continued practice; all time points - anxiety (Hospital Anxiety and Depression Scale), AQLQ (Asthma Quality of Life Questionnaire). RESULTS: No group differences in baseline expectancy. Statistically significant results (P < 0.05) indicated that at follow-up, F2FB participants perceived greater need for a physiotherapist than DVD and booklet participants (3.43 (0.87) versus 2.15 (1.26)). F2FB participants reported greater enjoyment of core techniques (such as stomach breathing: 7.42 (1.67) versus 6.13 (1.99) (DVD and booklet)). Fewer F2FB participants reported problems due to doubts (24 (22.9%) versus 90 (54.2%)). F2FB participants completed more practice sessions (75.01 (46.38) versus 48.56 (44.71)). Amount of practice was not significantly related to quality of life. In the DVD and booklet arm, greater confidence in breathing retraining ability explained 3.9% of variance in quality of life at 12 months. CONCLUSION: Adults with asthma receiving breathing retraining face-to-face report greater enjoyment and undertaking more practice than those receiving a DVD and booklet. Greater confidence in ability to do breathing retraining is associated with improved QoL.


Asunto(s)
Asma/fisiopatología , Asma/rehabilitación , Terapia por Ejercicio/métodos , Calidad de Vida , Terapia Respiratoria/métodos , Adulto , Ansiedad , Asma/psicología , Femenino , Estudios de Seguimiento , Humanos , Masculino , Folletos , Factores de Tiempo , Resultado del Tratamiento
14.
PLoS One ; 13(2): e0193407, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29489869

RESUMEN

BACKGROUND: Multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences. METHODS: 3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out ('monitor') or avoid ('blunt') information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants' quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data. RESULTS: 53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences. CONCLUSIONS: People with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.


Asunto(s)
Esclerosis Múltiple/diagnóstico , Prioridad del Paciente/psicología , Adulto , Anciano , Anciano de 80 o más Años , Comunicación , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Prioridad del Paciente/estadística & datos numéricos , Pronóstico , Encuestas y Cuestionarios , Reino Unido , Adulto Joven
15.
Lancet Respir Med ; 6(1): 19-28, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-29248433

RESUMEN

BACKGROUND: Despite effective pharmacotherapy, asthma continues to impair quality of life for most patients. Non-pharmacological approaches, including breathing retraining, are therefore of great interest to patients. However, clinicians rarely advocate breathing retraining and access to this intervention is restricted for most patients due to the limited availability of suitable physiotherapists and poor integration of breathing retraining into standard care. We aimed to assess the effectiveness of a digital self-guided breathing retraining intervention. METHODS: In this randomised controlled trial, we recruited patients from 34 general practices in the UK. Eligibility criteria for patients with asthma were broad, comprising a physician diagnosis of asthma, age of 16-70 years, receipt of at least one anti-asthma medication in the previous year, and impaired asthma-related quality of life (Asthma Quality of Life Questionnaire [AQLQ] score of <5·5). We developed a self-guided intervention, which was delivered as a DVD plus a printed booklet (DVDB). Participants were randomly assigned to receive either the DVDB intervention, three face-to-face breathing retraining sessions, or standard care, in a 2:1:2 ratio, for 12 months. Randomisation was achieved using the Southampton Clinical Trials Unit telephone randomisation service by use of random number generators. The primary outcome was the AQLQ score in the intention-to-treat population at 12 months. The trial was powered to show equivalence between the two active intervention groups, and superiority of both intervention groups over usual care. Secondary outcomes included patient-reported and physiological measures of asthma control, patient acceptability, and health-care costs. This trial was registered with International Standard Randomised Controlled Trial Number registry, number ISRCTN88318003. FINDINGS: Between Nov 5, 2012 and Jan 28, 2014, invitations to participate in the study were sent to 15 203 patients with general practitioner-diagnosed asthma, of whom 655 were recruited into the study. AQLQ scores at 12 months were significantly higher in the DVDB group (mean 5·40, SD 1·14) than in the usual care group (5·12, SD 1·17; adjusted mean difference 0·28, 95% CI 0·11 to 0·44), and in the face-to-face group (5·33, SD 1·06) than in the usual care group (adjusted mean difference 0·24, 95% CI 0·04 to 0·44); AQLQ scores were similar between the DVDB group and the face-to-face group (0·04, 95% CI -0·16 to 0·24). There were no significant differences between the randomisation groups in FEV1 or fraction of exhaled nitric oxide. 744 adverse events occurred in 272 patients: 101 (39%) of 261 patients in the DVDB group, 55 (42%) of 132 patients in the face-to-face group, and 132 (50%) of 262 in the usual care group, with patients reporting one or more event. 11 (4%) patients in the DVDB group, four (3%) patients in the face-to-face group, and 20 (8%) patients in the usual care group had a serious adverse event. INTERPRETATION: Breathing retraining programmes improve quality of life in patients with incompletely controlled asthma despite having little effect on lung function or airway inflammation. Such programmes can be delivered conveniently and cost-effectively as a self-guided digital audiovisual programme, so might also reduce health-care costs. FUNDING: UK National Institute of Health Research.


Asunto(s)
Asma/rehabilitación , Modalidades de Fisioterapia , Terapia Respiratoria/métodos , Automanejo/métodos , Telerrehabilitación/métodos , Adolescente , Adulto , Anciano , Asma/fisiopatología , Espiración , Femenino , Volumen Espiratorio Forzado , Humanos , Masculino , Persona de Mediana Edad , Óxido Nítrico/análisis , Respiración , Resultado del Tratamiento , Adulto Joven
16.
NPJ Prim Care Respir Med ; 27(1): 57, 2017 Oct 09.
Artículo en Inglés | MEDLINE | ID: mdl-28993623

RESUMEN

Self-management is an established, effective approach to controlling asthma, recommended in guidelines. However, promotion, uptake and use among patients and health-care professionals remain low. Many barriers and facilitators to effective self-management have been reported, and views and beliefs of patients and health care professionals have been explored in qualitative studies. We conducted a systematic review and thematic synthesis of qualitative research into self-management in patients, carers and health care professionals regarding self-management of asthma, to identify perceived barriers and facilitators associated with reduced effectiveness of asthma self-management interventions. Electronic databases and guidelines were searched systematically for qualitative literature that explored factors relevant to facilitators and barriers to uptake, adherence, or outcomes of self-management in patients with asthma. Thematic synthesis of the 56 included studies identified 11 themes: (1) partnership between patient and health care professional; (2) issues around medication; (3) education about asthma and its management; (4) health beliefs; (5) self-management interventions; (6) co-morbidities (7) mood disorders and anxiety; (8) social support; (9) non-pharmacological methods; (10) access to healthcare; (11) professional factors. From this, perceived barriers and facilitators were identified at the level of individuals with asthma (and carers), and health-care professionals. Future work addressing the concerns and beliefs of adults, adolescents and children (and carers) with asthma, effective communication and partnership, tailored support and education (including for ethnic minorities and at risk groups), and telehealthcare may improve how self-management is recommended by professionals and used by patients. Ultimately, this may achieve better outcomes for people with asthma.


Asunto(s)
Asma/terapia , Automanejo , Actitud del Personal de Salud , Actitud Frente a la Salud , Personal de Salud/psicología , Humanos , Automanejo/métodos , Automanejo/psicología , Resultado del Tratamiento
17.
NPJ Prim Care Respir Med ; 27(1): 56, 2017 Oct 05.
Artículo en Inglés | MEDLINE | ID: mdl-28983084

RESUMEN

Poor symptom control and impaired quality of life are common in adults with asthma, and breathing retraining exercises may be an effective method of self-management. This study aimed to explore the experiences of participants in the intervention arms of the BREATHE trial, which investigated the effectiveness of breathing retraining as a mode of asthma management. Sixteen people with asthma (11 women, 8 per group) who had taken part in the intervention arms of the BREATHE trial (breathing retraining delivered by digital versatile disc (DVD) or face-to-face sessions with a respiratory physiotherapist) took part in semi-structured telephone interviews about their experiences. Interviews were analysed using thematic analysis. Breathing retraining was perceived positively as a method of asthma management. Motivations for taking part included being asked, to enhance progress in research, to feel better/reduce symptoms, and to reduce medication. Participants were positive about the physiotherapist, liked having the materials tailored, found meetings motivational, and liked the DVD and booklet. The impact of breathing retraining following regular practice included increased awareness of breathing and development of new habits. Benefits of breathing retraining included increased control over breathing, reduced need for medication, feeling more relaxed, and improved health and quality of life. Problems included finding time to practice the exercises, and difficulty mastering techniques. Breathing retraining was acceptable and valued by almost all participants, and many reported improved wellbeing. Face to face physiotherapy was well received. However, some participants in the DVD group mentioned being unable to master techniques. ASTHMA: PATIENTS RECEPTIVE TO BREATHING RETRAINING: Patients with asthma taught how to change their unconscious breathing patterns generally like non-pharmacological interventions. Researchers in the UK, led by Mike Thomas from the University of Southampton, interviewed 16 people about their experiences in a trial that tested breathing retraining exercises delivered by DVD or face-to-face sessions with a respiratory physiotherapist. Overwhelmingly, trial participants reported that breathing retraining sessions gave them greater control over their symptoms, helped them relax, improved their quality of life and reduced the need for medications. Some participants who received DVD instruction said they had trouble mastering the techniques, and many in both groups found it hard to find time to practice the exercises. Overall, however, patients were positive about the experience. The authors conclude that breathing exercises are likely to be a well-received method of asthma management.


Asunto(s)
Asma/terapia , Ejercicios Respiratorios , Adulto , Asma/psicología , Actitud Frente a la Salud , Ejercicios Respiratorios/métodos , Ejercicios Respiratorios/psicología , Femenino , Humanos , Entrevistas como Asunto , Masculino , Motivación , Investigación Cualitativa , Terapia Respiratoria/métodos , Automanejo/métodos
18.
Health Technol Assess ; 21(53): 1-162, 2017 09.
Artículo en Inglés | MEDLINE | ID: mdl-28944752

RESUMEN

BACKGROUND: Asthma control is suboptimal, resulting in quality of life (QoL) impairment and costs. Breathing retraining exercises have evidence of effectiveness as adjuvant treatment, but are infrequently used. OBJECTIVES: To transfer the contents of a brief (three-session) physiotherapist-delivered breathing retraining programme to a digital versatile disc (DVD) and booklet format; to compare the effectiveness of the self-guided intervention with that of 'face-to-face' physiotherapy and usual care for QoL and other asthma-related outcomes; to perform a health economic assessment of both interventions; and to perform a process evaluation using quantitative and qualitative methods. DESIGN: Parallel-group three-arm randomised controlled trial. SETTING: General practice surgeries in the UK. PARTICIPANTS: In total, 655 adults currently receiving asthma treatment with impaired asthma-related QoL were randomly allocated to the DVD (n = 261), physiotherapist (n = 132) and control (usual care) (n = 262) arms in a 2 : 1 : 2 ratio. It was not possible to blind participants but data collection and analysis were performed blinded. INTERVENTIONS: Physiotherapy-based breathing retraining delivered through three 'face-to-face' respiratory physiotherapist sessions or a self-guided programme (DVD plus our theory-based behaviour change booklet) developed by the research team, with a control of usual care. MAIN OUTCOME MEASURES: The primary outcome measure was asthma-specific QoL, measured using the Asthma Quality of Life Questionnaire (AQLQ). Secondary outcomes included asthma symptom control [Asthma Control Questionnaire (ACQ)], psychological state [Hospital Anxiety and Depression Scale (HADS)], hyperventilation symptoms (Nijmegen questionnaire), generic QoL [EuroQol-5 Dimensions (EQ-5D)], assessments of airway physiology (spirometry) and inflammation (exhaled nitric oxide) and health resource use and costs. Assessments were carried out at baseline and at 3, 6 and 12 months post randomisation. Patient engagement and experience were also assessed using quantitative and qualitative methods. RESULTS: Primary efficacy analysis was between-group comparison of changes in AQLQ scores from baseline to 12 months in the intention-to-treat population with adjustments for prespecified covariates. Significant improvements occurred in the DVD group compared with the control group [adjusted mean difference 0.28, 95% confidence interval (CI) 0.11 to 0.44; p < 0.001] and in the face-to-face physiotherapy group compared with the control group (adjusted mean difference 0.24, 95% CI 0.04 to 0.44; p < 0.05), with equivalence between the DVD and the face-to-face physiotherapy groups (adjusted mean difference 0.04, 95% CI -0.16 to 0.24). In all sensitivity analyses, both interventions remained significantly superior to the control and equivalence between the interventions was maintained. In other questionnaire outcome measures and in the physiological measures assessed, there were no significant between-group differences. Process evaluations showed that participants engaged well with both of the active interventions, but that some participants in the DVD arm would have liked to receive tuition from a professional. Asthma health-care costs were lower in both intervention arms than in the control group, indicating 'dominance' for both of the interventions compared with the control, with lowest costs in the DVD arm. The rate of adverse events was lower in the DVD and face-to-face physiotherapy groups than in the control group. CONCLUSIONS: Only 10% of the potentially eligible population responded to the study invitation. However, breathing retraining exercises improved QoL and reduced health-care costs in adults with asthma whose condition remains uncontrolled despite standard pharmacological therapy, were engaged with well by patients and can be delivered effectively as a self-guided intervention. The intervention should now be transferred to an internet-based platform and implementation studies performed. Interventions for younger patients should be developed and trialled. TRIAL REGISTRATION: Current Controlled Trials ISRCTN88318003. FUNDING: This project was primarily funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 53. See the NIHR Journals Library website for further project information. Additional financial support was received from Comprehensive Local Research Networks.


Asunto(s)
Asma/terapia , Terapia por Ejercicio/métodos , Fisioterapeutas , Calidad de Vida , Grabación en Video/métodos , Adulto , Anciano , Terapia por Ejercicio/economía , Femenino , Humanos , Masculino , Persona de Mediana Edad , Modalidades de Fisioterapia , Encuestas y Cuestionarios
19.
Ann Fam Med ; 15(3): 209-216, 2017 05.
Artículo en Inglés | MEDLINE | ID: mdl-28483885

RESUMEN

PURPOSE: Vestibular rehabilitation is an effective intervention for dizziness due to vestibular dysfunction, but is seldom provided. We aimed to determine the effectiveness of an Internet-based vestibular rehabilitation program for older adults experiencing dizziness in primary care. METHODS: We undertook a single-center, single-blind randomized controlled trial comparing an Internet-based vestibular rehabilitation intervention (Balance Retraining, freely available from https://balance.lifeguidehealth.org) with usual primary care in patients from 54 primary care practices in southern England. Patients aged 50 years and older with current dizziness exacerbated by head movements were enrolled. Those in the intervention group accessed an automated Internet-based program that taught vestibular rehabilitation exercises and suggested cognitive behavioral management strategies. Dizziness was measured by the Vertigo Symptom Scale-Short Form (VSS-SF) at baseline, 3 months, and 6 months. The primary outcome was VSS-SF score at 6 months. RESULTS: A total of 296 patients were randomized in the trial; 66% were female, and the median age was 67 years. The VSS-SF was completed by 250 patients (84%) at 3 months and 230 patients (78%) at 6 months. Compared with the usual care group, the Internet-based vestibular rehabilitation group had less dizziness on the VSS-SF at 3 months (difference, 2.75 points; 95% CI, 1.39-4.12; P <.001) and at 6 months (difference, 2.26 points; 95% CI, 0.39-4.12; P = .02, respectively). Dizziness-related disability was also lower in the Internet-based vestibular rehabilitation group at 3 months (difference, 6.15 points; 95% CI, 2.81-9.49; P <.001) and 6 months (difference, 5.58 points; 95% CI, 1.19-10.0; P = .01). CONCLUSIONS: Internet-based vestibular rehabilitation reduces dizziness and dizziness-related disability in older primary care patients without requiring clinical support. This intervention has potential for wide application in community settings.


Asunto(s)
Mareo/terapia , Atención Primaria de Salud/métodos , Enfermedades Vestibulares/rehabilitación , Anciano , Mareo/etiología , Femenino , Humanos , Internet , Masculino , Persona de Mediana Edad , Método Simple Ciego , Resultado del Tratamiento , Enfermedades Vestibulares/complicaciones
20.
Psychol Health ; 32(11): 1327-1347, 2017 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-28399681

RESUMEN

OBJECTIVE: Factors influencing engagement with self-managed rehabilitation are not well understood, but evidence suggests they may change over time. Despite increasing digitalisation of self-managed interventions, little is known about the role of internet-based interventions in patients' experiences of self-directed rehabilitation. This longitudinal qualitative study investigated individuals' ongoing experiences of internet-guided, self-managed rehabilitation within the context of rehabilitation for dizziness. METHODS: Eighteen adults aged fifty and over who experienced dizziness used the 'Balance Retraining' internet intervention for six weeks. Participants took part in semi-structured telephone interviews at two-week intervals to explore their experiences. Data were inductively thematically analysed. RESULTS: The internet intervention was reported to facilitate engagement with rehabilitation exercises, providing motivation to continue through symptom reduction and simple but helpful strategies. It was perceived as informative, reassuring, visually pleasing and easy to use. Barriers to engagement included practicalities, symptoms and doubts about exercise efficacy. Participants' perceptions did not always remain consistent over time. CONCLUSION: The internet intervention may be a feasible method of supporting self-managed vestibular rehabilitation. More generally, longitudinal findings suggest that appearance-related perceptions of online interventions may be especially important for initial engagement. Furthermore, intervention features targeting self-efficacy seem important in overcoming barriers to engagement.


Asunto(s)
Mareo/rehabilitación , Terapia por Ejercicio/psicología , Internet , Terapia Asistida por Computador , Anciano , Estudios de Factibilidad , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Motivación , Satisfacción del Paciente , Investigación Cualitativa , Autocuidado/psicología
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