The impact of chronic breathlessness on psychological concerns and quality of life in an older, frail population in primary care

Background Chronic breathlessness is a debilitating symptom with major detrimental impact on individuals, carers, across health care settings. Little is known about prevalence, impact, or experience of breathlessness in the older, frail population.Aims For older adults at risk of frailty: to explore the impact of chronic breathlessness on patients’ and carers’ psychological wellbeing and quality of life (QoL), and to explore how chronic breathlessness is identified and assessed in primary care, considering patient, carer, and health care practitioner (HCP) experiences. Methods A multiple-methods thesis incorporating a systematic review and mixed-methods study. My quantitative narrative systematic review of published literature aimed to determine how clinicians identified and assessed breathlessness across health care settings. My mixed-methods study included: a quantitative cross-sectional survey to determine prevalence and psychological impact of chronic breathlessness, and clinical factors associated with breathlessness, in the primary care setting; qualitative in-depth interviews further explored psychological impact and experiences of management in primary care for patients, carers, and HCPs. Mixed-methods findings were synthesised using modified critical interpretative synthesis, then integrated with the systematic review results.Findings Chronic breathlessness is prevalent (40%) in older, frail adults and associated with worse psychological outcomes and poorer QoL. People with chronic breathlessness give up activities because of their breathlessness which is conflated with the underlying disease and not recognised as therapeutic target by patient or HCPs. Chronic breathlessness is often ‘one of many’ symptoms and in the primary care context of ‘one appointment, one problem’, remains invisible and unmanaged. HCPs can feel helpless and do not routinely ask about impact of breathlessness on QoL.Conclusions Lack of routine assessment in primary care means older, frail adults with chronic breathlessness may not access evidence-based symptom-targeted interventions. Systematic identification, assessment, and management in primary care may help improve psychological health, QoL, and overall wellbeing

Pain reconceptualisation after Pain Neurophysiology Education in adults with chronic low back pain:A qualitative study

Pain neurophysiology education (PNE) is an educational intervention for patients with chronic pain. PNE purports to assist patients to reconceptualise their pain away from the biomedical model towards a more biopsychosocial understanding by explaining pain biology. This study aimed to explore the extent, and nature, of patients’ reconceptualisation of their chronic low back pain (CLBP) following PNE. Eleven adults with CLBP underwent semistructured interviews before and three weeks after receiving PNE. Interviews were transcribed verbatim and thematically analysed in a framework approach using four a priori themes identified from our previous research: (1) degrees of reconceptualisation, (2) personal relevance, (3) importance of prior beliefs, and (4) perceived benefit of PNE. We observed varying degrees of reconceptualisation from zero to almost complete, with most participants showing partial reconceptualisation. Personal relevance of the information to participants and their prior beliefs were associated with the degree of benefit they perceived from PNE. Where benefits were found, they manifested as improved understanding, coping, and function. Findings map closely to our previous studies in more disparate chronic pain groups. The phenomenon of reconceptualisation is applicable to CLBP and the sufficiency of the themes from our previous studies increases confidence in the certainty of the findings

A non-randomised controlled study to assess the effectiveness of a new proactive multidisciplinary care intervention for older people living with frailty

BackgroundIntegrated care may improve outcomes for older people living with frailty. We aimed to assess the effectiveness of a new, anticipatory, multidisciplinary care service in improving the wellbeing and quality of life (QoL) of older people living with severe frailty.MethodsA community-based non-randomised controlled study. Participants (≥65 years, electronic Frailty Index ≥0.36) received either the new integrated care service plus usual care, or usual care alone. Data collection was at three time points: baseline, 2-4 weeks, and 10-14 weeks. The primary outcome was patient wellbeing (symptoms and other concerns) at 2-4 weeks, measured using the Integrated Palliative care Outcome Scale (IPOS); the secondary outcome was QoL, measured using EQ-5D-5L. To test duration of effect and safety, wellbeing and QoL were also measured at 10-14 weeks. Descriptive statistics were used to characterise and compare intervention and control groups (eligible but had not accessed the new service), with t-test, Chi-Square, or Mann-Whitney U tests (as appropriate) to test differences at each time point. Generalised linear modelling, with propensity score matching, was used for further group comparisons. Data were analysed using STATA v17.Results199 intervention and 54 control participants were recruited. At baseline, intervention and control groups were similar in age, gender, ethnicity, living status, and body mass index, but not functional status or area deprivation score. At 2-4 weeks, wellbeing had improved in the intervention group but worsened in the control (median IPOS -5 versus 2, p<0.001). QoL improved in the intervention group but was unchanged in the control (median EQ-5D-5L 0.12, versus 0.00, p<0.001). After adjusting for age, gender, and living status, the intervention group had an average total IPOS score reduction at 2-4 weeks of 6.34 (95% CI: -9.01: -4.26, p<0.05); this improvement was sustained, with an average total IPOS score reduction at 10-14 weeks of 6.36 (95% CI: -8.91:-3.80, p<0.05). After propensity score matching based on functional status/area deprivation, modelling showed similar results, with a reduction in IPOS score at 2-4 weeks in the intervention group of 7.88 (95% CI: -12.80: -2.96, p<0.001).ConclusionsOur findings suggest that the new, anticipatory, multidisciplinary care service may have improved the overall wellbeing and quality of life of older people living with frailty at 2-4 weeks and the improvement in wellbeing was sustained at three months

Interview transcripts for “I’m living in a ‘no’ world now…”- A Qualitative Study of The Widespread Impact of Living with Chronic Breathlessness, and Experiences of Identification and Assessment of this Symptom in an Older, Frail community-based Population.

BackgroundChronic breathlessness is a debilitating symptom with detrimental impact on individuals and carers. However, little is known about the experiences of community-dwelling, frail, older adults living with chronic breathlessness. AimsTo explore, i) the psychological impact of living with chronic breathlessness, (older frail adult patients, carers) and ii) how patients, carers, and clinicians experience identification and assessment of chronic breathlessness in the primary care setting. MethodsIn-depth semi-structured interviews with eligible older adults (≥65 years; moderate to severe frailty [electronic Frailty Index >0.36]), and carers recruited from a community-based Integrated Care Centre in England. Clinicians were recruited from the Centre and affiliated GP practices. Recorded in-person interviews were transcribed and subjected to reflexive thematic analysis using Total Dyspnoea and Breathing Space conceptual frameworks.Results20 patients (9 females), carers (4 spouses, 1 daughter), and clinicians (5 GPs, 3 advanced clinical practitioners, 2 nurses) were interviewed. Four themes were identified: 1) Widespread negative impact of chronic breathlessness. Breathlessness adversely impacts physical and psychological wellbeing. 2) Barriers to optimal health-seeking and identification of chronic breathlessness. Breathlessness is ‘one of many’ symptoms, and not prioritised in ‘one appointment, one problem’ consultations. Clinicians do not routinely ask about breathlessness. Patients are unaware of breathlessness-specific therapies; 3) Variations in chronic breathlessness management. Management is limited; few are offered evidence-based treatments (e.g., handheld fan) and patients find their own strategies. 4) Need for education and information. Clinicians felt helpless about breathlessness management, and patients lacked understanding and had low expectations of receiving help for this symptom.ConclusionBreathlessness adversely impacts the psychological wellbeing of older frail adults. Chronic breathlessness in older, frail adults is invisible, unidentified and unmanaged in primary care. Evidence-based breathlessness interventions are available, but not routinely implemented with few patients accessing them. Proactive identification, assessment and management of breathlessness in primary care is needed to support adults living with chronic breathlessness

Identification and assessment of breathlessness in clinical practice: a systematic review and narrative synthesis.

Context: Breathlessness is common in chronic conditions but often goes unidentified by clinicians. It is important to understand how identification and assessment of breathlessness occurs across health care settings, to promote routine outcome assessment and access to treatment. Objective: The objective of this study was to summarize how breathlessness is identified and assessed in adults with chronic conditions across different health care settings. Methods: This is a systematic review and descriptive narrative synthesis (PROSPERO registration: CRD42018089782). Searches were conducted on Medline, PsycINFO, Cochrane Library, Embase, and CINAHL (2000–2018) and reference lists. Screening was conducted by two independent reviewers, with access to a third, against inclusion criteria. Data were extracted using a bespoke proforma. Results: Ninety-seven studies were included, conducted in primary care (n = 9), secondary care (n = 53), and specialist palliative care (n = 35). Twenty-five measures of identification and 41 measures of assessment of breathlessness were used. Primary and secondary care used a range of measures to assess breathlessness severity, cause, and impact for people with chronic obstructive pulmonary disease. Specialist palliative care used measures assessing broader symptom severity and function with less focus on overall quality of life. Few studies were identified from primary care. Conclusion: Various measures were identified, reflective of the setting's purpose. However, this highlights missed opportunities for breathlessness management across settings; primary care is particularly well placed to diagnose and support breathlessness. The chronic obstructive pulmonary disease approach (where symptoms and quality of life are part of disease management) could apply to other conditions. Better documentation of holistic patient-reported measures may drive service improvement in specialist palliative care

Needs and experiences of homecare workers when supporting people to live at home at the end of life: a rapid review

Background Social homecare workers provide essential care to those living at home at the end of life. In the context of a service experiencing difficulties in attracting and retaining staff, we have limited knowledge about the training, support needs and experiences of this group.Aim To gain a timely understanding from the international literature of the experience, training and support needs of homecare workers providing end-of-life care.Methods We conducted a rapid review and narrative synthesis using the recommendations of the Cochrane Rapid Reviews Methods Group. Building on a previous review, social homecare worker and end-of-life search terms were used to identify studies. Quality appraisal was conducted using a multimethods tool.Data sources CINAHL and Medline databases (2011–2023; English language).Results 19 papers were included representing 2510 participants (91% women) providing new and deeper insights. Four themes were generated: (1) emotional support; homecare workers need to manage complex and distressing situations, navigating their own, their clients’ and clients’ family, emotions; (2) interaction with other social and healthcare workers; homecare workers are isolated from, and undervalued and poorly understood by the wider healthcare team; (3) training and support; recognising the deteriorating client, symptom management, practicalities around death, communications skills and supervision; (4) recognising good practice; examples of good practice exist but data regarding effectiveness or implementation of interventions are scant.Conclusions Social homecare workers are essential for end-of-life care at home but are inadequately trained, often isolated and underappreciated. Our findings are important for policy-makers addressing this crucial challenge, and service providers in social and healthcare

Experiences of a Novel Integrated Service for Older Adults at Risk of Frailty: A Qualitative Study

The UK has a significant and growing population of older adults with frailty and complex healthcare needs, necessitating innovative care solutions. This study aimed to explore patients’ and carers’ experiences of a novel integrated service that was set up to address the increasing healthcare needs of older people living with frailty. A qualitative study that combined free-text survey questions with in-depth interviews. This study is part of a larger non-randomized trial of the service, with evaluation of wellbeing and quality of life at baseline, 2 to 4 weeks, and 10 to 14 weeks. Patients (aged 65 and above) with an electronic Frailty Index in the severe range and their informal family carers participated in this study. Data were collected between April 2019 and March 2020. Free text survey responses and interview data were subjected to reflexive thematic analyses. Four themes were generated: the overall experience of the service; interactions within the service; treatment and interventions; and outcomes due to the service. Most participants wanted further follow-up and more extensive integration with other services. Most participants described their overall experience positively, especially the available time to address their full range of concerns, but opportunities to integrate the service more fully and to extend follow-up remain