The illness burden of severe asthma contrasted to people with mild-to-moderate asthma: a qualitative study.

Background: Disabling symptoms of asthma including breathlessness, cough, wheeze and chest tightness largely impact quality of life; however, how these symptoms impact people with asthma of different severity levels remains unknown. This study aimed to compare and characterise patients' symptom experience and the burden caused, their quality of life, and the medication preferences of people with severe asthma against those of people with mild-to-moderate asthma. Methods: This was a multisite qualitative study involving two focus groups and semistructured interviews of adults with severe asthma undertaken in Australia and UK. Interviews were also undertaken in people with mild-to-moderate asthma. Audio recordings were transcribed and analysed thematically. Results: Participants in both severe asthma and mild-to-moderate asthma groups had a mean±sd age of 57±12 years. Between the severe asthma and mild-to-moderate asthma groups, 62% of participants were female and 86% lived with family. Themes were identified: 1) what is asthma and most bothersome symptoms: both groups reported breathlessness as the most bothersome symptom; 2) impacts on life: disease-related impact differed as people with severe asthma reported significant burden in their quality of life, which encompassed emotional, physical, social and financial wellbeing; and 3) personalised and responsive care: severe asthma interviewees preferred injectable biological therapy as a mode of treatment administration. Conclusions: People with asthma are burdened by breathlessness and cough and other disabling symptoms resulting in impaired quality of life. Understanding the experiences of people with asthma of different severities can improve the patient-clinician partnership.

Living With Asthma and Vocal Cord Dysfunction/Inducible Laryngeal Obstruction: "I Just Can't Get Air In".

BACKGROUND: Asthma and vocal cord dysfunction (VCD), also known as inducible laryngeal obstruction (ILO), may coexist, resulting in worse outcomes for patients. The experience of people with VCD/ILO and coexisting asthma is unknown. OBJECTIVE: We sought to determine whether coexistent VCD/ILO and asthma have deleterious impacts on quality of life. METHODS: We undertook a descriptive qualitative study using one-to-one semistructured interviews with 30 purposively recruited adult participants with a prior confirmed doctor asthma diagnosis and laryngoscopy-confirmed VCD/ILO. A thematic and content analysis was conducted to explore the data. RESULTS: Participants were mostly female (63%), mean ± SD age 63 ± 12 years. Four themes were identified: trapped voice, altered life, knowledge about VCD/ILO, and looking for solutions. Participants reported their voice being trapped in their throat or the voice being suddenly cut off when talking or singing. Self-reported VCD/ILO symptoms including throat tightness and breathlessness were highlighted by participants. The second theme described how patients struggle to communicate or tended to shorten conversations. Insufficient knowledge and existing confusion regarding whether asthma was causing the breathlessness was described in the third theme. Looking for solutions depicted participants' diagnostic journey and how they sought an explanation for the symptoms. CONCLUSIONS: People with asthma and coexisting VCD/ILO experience a substantial burden affecting the quality of life. These data describe the impact on patients with coexisting conditions and should be used to increase clinician awareness of the experience of VCD/ILO from patients' perspectives to support a personalized approach to care.

Healthcare Professionals' Perspectives of Nonsurgical Care of Older Inpatients with Class II or III Obesity and Comorbidities: A Qualitative Study.

Background: Older people with Class II or III obesity and comorbidities experience complex care needs with frequent hospital admissions. In 2019/20 the National Health Service in England reported a 17% increase in hospital admissions of patients with obesity compared to 2018/19. Gaps in care for this population have been identified. Purpose: The purpose of this study was to understand the experiences and perspectives of healthcare professionals delivering non-surgical care to older people with Classes II or III obesity admitted to a tertiary care hospital. Methods: Healthcare professionals delivering non-surgical care to older people admitted with Class II or III obesity with comorbidities were recruited from an Australian tertiary referral hospital. Qualitative semi-structured interviews were conducted with 24 healthcare professionals from seven disciplines between August and December 2019. The interviews were audio-recorded, transcribed, and reviewed by participants for accuracy. Thematic inductive data analysis was deductively mapped to the Theoretical Domains Framework (TDF). Results: Four major themes of Barriers, Facilitators, Current Practice, and Recommendations and 11 subthemes were identified and mapped to nine domains in the TDF. The Barriers subtheme identified perceived patient related factors, health system issues, and provider issues, while the Facilitators subtheme included a patient centred approach, knowledge, and resources in the subacute setting. The major Current Practice theme explored factors influencing clinical management, and the Recommendations subthemes included engaging patients, access to quality care, education and support, and obesity as a chronic disease. Conclusion: This novel application of the TDF provided broad insights related to the barriers and facilitators in delivering non-surgical care to this hospital population, from the perspective of healthcare professionals. Understanding how these barriers interact can provide strategies to influence behaviour change and assist in the development of a holistic multidisciplinary model of care.

Identifying the asthma research priorities of people with asthma, their carers and other stakeholders.

BACKGROUND AND OBJECTIVE: People living with asthma, their carers, clinicians and policymakers are the end-users of research and need research that address their individual healthcare needs. We aimed to understand the research priorities of end-users of asthma research. METHODS: A national cross-sectional mixed-methods study was conducted. The study included an online survey that engaged patients, carers, healthcare professionals and policymakers to provide statements to free-text questions about what they would like to see answered by research to improve living with asthma on a day-to-day basis. Responses where thematically analysed followed by three online priority setting consensus workshops. RESULTS: There were 593 respondents who provided 1446 text comments. Participants prioritized 10 asthma research themes which were: (1) asthma in children, (2) COVID 19 and asthma, (3) asthma care and self-management, (4) diagnosis and medication, (5) managing asthma attacks, (6) causes, prevention and features of asthma, (7) mental health, (8) asthma and ageing, (9) severe asthma, (10) asthma and other health conditions. Each theme comprises specific research questions. CONCLUSION: This project successfully established 10 priority research themes for asthma, reflecting the collective voice of the end-users of this research. These novel data can be used to address the documented mismatch in research prioritization between the research community and the end-users of research.

Using a knowledge translation framework to identify health care professionals' perceived barriers and enablers for personalised severe asthma care.

BACKGROUND: Whilst multidimensional assessment enables the detection of treatable traits in severe asthma and has the potential to improve patient outcomes, healthcare disparities exist, and little is known about the factors influencing optimal management in severe asthma. This study aimed to explore perceived barriers, and enablers to implementing personalised care in severe asthma, from the healthcare professionals' perspective. METHODS: A descriptive, qualitative study involving a single focus group (n = 7) and semi-structured interviews (n = 33) with multidisciplinary healthcare professionals involved in severe asthma care was conducted. A hybrid thematic and content analysis was undertaken to identify themes, which were then deductively mapped to the Theoretical Domains Framework (TDF). RESULTS: Overall, three emergent themes were identified: (1) Barriers- (2) Enablers- to optimal management; (3) Desired model of care. Across all TDF domains, 6 constructs influenced development and implementation of optimal care: (1) belief about consequences, (2) environmental context and resources, (3) belief about capabilities, (4) social/professional role and identity, (5) goals and (6) knowledge. CONCLUSION: Implementation of personalised care in severe asthma is complex and non-linear. The use of a theory-based approach effectively demonstrated how a variety of behaviours could be targeted to optimise and promote personalised care in different clinical setting.

The needs and well-being of severe asthma and COPD carers: A cross-sectional study.

BACKGROUND AND OBJECTIVE: Caring for people with severe asthma and chronic obstructive pulmonary disease (COPD) can impair the quality of life (QoL) of the carer. We aimed to describe the QoL and needs of severe asthma and COPD carers. METHODS: Carers of severe asthma (n = 89) and COPD (n = 48) completed an online cross-sectional survey assessing QoL and carer support needs using the Short Form Health Survey 12v2 (SF-12), the Hospital Anxiety and Depression Scale (HADS) and Carers Support Needs Assessment Tool (CSNAT) questionnaires. RESULTS: Carers of people with severe asthma and COPD were similar in age (mean ± SD 57.78 ± 14.09 vs. 56.93 ± 12.91) and gender (65% female vs. 66%); however, they differed in caring duration (proportion caring for >10 years: 65% vs. 33%, p < 0.002). QoL was impaired in both groups, but there were no significant differences between severe asthma and COPD carers in either of the SF-12 component scores. The HADS scores revealed no difference between groups. Compared to severe asthma carers, COPD carers had significantly greater needs for: 'having time for self' (33% vs. 13%, p = 0.006), 'equipment to help care for relative' (33% vs. 13%, p = 0.006), 'practical help in the home' (35% vs. 18%, p = 0.006) and 'getting a break from caring overnight' (21% vs. 6%, p = 0.023). CONCLUSION: QoL is impaired in carers of people with severe asthma to a similar degree of COPD carers and other debilitating diseases like cancer. These novel data highlight the support needs of severe asthma carers and identifies areas where tailored support is needed to reduce their substantial carer burden.

The Experience of Living with Severe Asthma, Depression and Anxiety: A Qualitative Art-Based Study.

PURPOSE: Severe asthma, depression and anxiety often co-exist and increase disease burden. Currently there are no published studies investigating severe asthma and psychological comorbidity using arts-based methodology. We aimed to (i) illustrate the individual experience of adults living with severe asthma, with and without symptoms of depression and/or anxiety and (ii) to explore common characteristics depicted in artworks between those groups. PATIENTS AND METHODS: A qualitative arts-based study was conducted. Adults with severe asthma were categorised into two groups according to Hospital Anxiety and Depression Scale scores (<8 on either subscale [SA-D/A] (N=15) or (≥8 on one or both subscales [SA+D/A] (N=15). Art thematic analysis was undertaken using a hybrid approach. The Common-Sense Model of Self-Regulation was used to examine frequencies in artworks. RESULTS: Participants with severe asthma alone and severe asthma with depression/anxiety were of older age (median 67 and 63 years respectively). There was greater asthma QoL impairment in participants with psychological comorbidity than without (4.7 ± 8.3 versus 5.8 ± 0.85, p=<0.01). Analysis of art works identified three themes: (1) "darkness" depicting misery, isolation and sadness; (2) "impacts" describing physical and social consequences; and (3) "resilience" illustrating acceptance and perseverance of living with all three conditions. CONCLUSION: Art-based research in severe asthma facilitates detailed exploration of intimate and individual experiences. Darkness, impacts and resilience are common themes emerging from artworks. Understanding these experiences may help guide assessment and treatment of psychological comorbidity in the clinic.

"It's like being on a roller coaster": the burden of caring for people with severe asthma.

INTRODUCTION: Family carers and significant others play a fundamental role in the well-being of people with severe asthma. This study aimed to investigate the challenges faced by family carers/significant others of people with severe asthma, to understand if there is an unmet need and to explore coping strategies. METHODS: Carers of people with severe asthma were invited to participate in a face-to-face or telephone interview. Semi-structured interviews were conducted until reaching data saturation of themes. The 20 interviews were recorded and transcribed, and analysis of data followed an inductive thematic approach. RESULTS: We report three overarching emergent themes: 1) "Caring role impacts", which centred around the negative and positive impacts of caring on carers' well-being; 2) "Unmet needs", which encapsulated the support needs participants desired and were categorised into unmet information, biopsychosocial needs and carers' involvement in decision-making; and 3) "Coping strategies", which were central to the range of tools and positive approaches in dealing with caring demands. DISCUSSION: Caring for someone with severe asthma can be burdensome and may negatively affect the physical and psychosocial health of the carer. Various coping strategies are used to manage the demands of these caring roles. Carers of people with severe asthma expressed a need for informational, biopsychosocial and involvement in care decision-making support. Tailored support services that are sensitive to their needs may improve their quality of life and encourage healthcare providers to value and acknowledge the important contribution that carers make.

Approaches to the assessment of severe asthma: barriers and strategies.

Asthma is a chronic condition with great variability. It is characterized by intermittent episodes of wheeze, cough, chest tightness, dyspnea and backed by variable airflow limitation, airway inflammation and airway hyper-responsiveness. Asthma severity varies uniquely between individuals and may change over time. Stratification of asthma severity is an integral part of asthma management linking appropriate treatment to establish asthma control. Precision assessment of severe asthma is crucial for monitoring the health of people with this disease. The literature suggests multiple factors that impede the assessment of severe asthma, these can be grouped into health care professional, patient and organizational related barriers. These barriers do not exist in isolation but interact and influence one another. Recognition of these barriers is necessary to promote precision in the assessment and management of severe asthma in the era of targeted therapy. In this review, we discuss the current knowledge of the barriers that impede assessment in severe asthma and recommend potential strategies for overcoming these barriers. We highlight the relevance of multidimensional assessment as an ideal approach to the assessment and management of severe asthma.