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Improving the quality of life of people with advanced respiratory disease and severe breathlessness.

ABSTRACT: Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services. Key points:People living with advanced respiratory disease and severe chronic breathlessness (and those closest to them) have a poor quality of life.Chronic breathlessness is a disabling symptom, and acute-on-chronic/episodic breathlessness is frightening to experience and observe.Chronic breathlessness imposes profound physical limitations and psychosocial burdens on those suffering from it or living with someone experiencing it.Fatigue and cough are two other cardinal symptoms of advanced respiratory disease, with very detrimental effects on quality of life.The impact of all these symptoms can be alleviated to a variable extent by a predominantly non-drug complex intervention.Many of the interventions are delivered primarily by allied health or nursing professionals.Doctors, nurses and other health professionals also need to play an active part in promoting quality of life as part of excellent medical care.A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease. Educational aims:To give specialist respiratory clinicians practical clinical tools to help improve the quality of life of their patients with advanced respiratory disease and chronic breathlessness.To outline the evidence base for these interventions with reference to definitive sources.To highlight the importance of person-centred care in people with respiratory disease at all stages of illness.

SUBMITTER: Booth S

PROVIDER: S-EPMC6717608 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Improving the quality of life of people with advanced respiratory disease and severe breathlessness.

Booth Sara S Johnson Miriam J MJ

Breathe (Sheffield, England) 20190901 3

Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impove ...[more]

PMID: 31508158

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Project description:BackgroundThe estimated 300,000 adults in Australia with severe mental illness (SMI) have markedly reduced life expectancy compared to the general population, mainly due to physical health comorbidities. Cardiovascular disease (CVD) is the commonest cause of early death and people with SMI have high rates of most modifiable risk factors, with associated quality of life (QoL) reduction. High blood pressure, smoking, dyslipidaemia, diabetes and obesity are major modifiable CVD risk factors. Poor delivery of recommended monitoring and risk reduction is a national and international problem. Therefore, effective preventive interventions to safeguard and support physical health are urgently needed in this population.MethodsThis trial used a rigorous process, including extensive piloting, to develop an intervention that delivers recommended physical health care to reduce CVD risk and improve QoL for people with SMI. Components of this intervention are integrated using the Flinders Program of chronic condition management (CCM) which is a comprehensive psychosocial care planning approach that places the patient at the centre of their care, and focuses on building their self-management capacity within a collaborative approach, therefore providing a recovery-oriented framework. The primary project aim is to evaluate the effectiveness and health economics of the CCM intervention. The main outcome measures examine CVD risk and quality of life. The second aim is to identify essential components, enablers and barriers at patient, clinical and organisational levels for national, sustained implementation of recommended physical health care delivery to people with SMI. Participants will be recruited from a community-based public psychiatric service.DiscussionThis study constitutes the first large-scale trial, worldwide, using the Flinders Program with this population. By combining a standardised yet flexible motivational process with a targeted set of evidence-based interventions, the chief aim is to reduce CVD risk by 20%. If achieved, this will be a ground-breaking outcome, and the program will be subsequently translated nationwide and abroad. The trial will be of great interest to people with mental illness, family carers, mental health services, governments and primary care providers because the Flinders Program can be delivered in diverse settings by any clinical discipline and supervised peers.Trial registrationAustralian and New Zealand Clinical Trials Registry, ACTRN12617000474358 . Registered on 31 March 2017.

Project description:ImportanceAlthough the importance of recovery-oriented care for people with severe mental illness (SMI) is widely acknowledged, essential elements such as personalization and involvement of significant others are not adequately implemented in practice.ObjectiveTo determine whether using resource groups (RGs) within flexible assertive community treatment (FACT) has favorable effects on empowerment and recovery-related outcomes in people with SMI.Design, setting, and participantsThis assessor-blind, multisite randomized clinical trial was conducted from September 1, 2017, to September 30, 2020, with follow-up at 9 and 18 months. A total of 158 participants aged 18 to 65 years meeting the criteria for SMI were randomly allocated to FACT plus RG vs FACT as usual (1:1) in 20 FACT teams throughout the Netherlands. Data were analyzed from September 1, 2020, to January 31, 2021. The study was prespecified in the trial protocol and data from the intent-to-treat population were analyzed.InterventionsIn the FACT plus RG condition, patients chose members from their informal and formal networks to form an RG that meets quarterly to discuss self-formulated recovery goals. The RG was integrated into the multidisciplinary support provided by the FACT team. In the FACT as-usual condition, empowerment (defined as overcoming powerlessness and gaining control of one's life) and involvement of significant others was also part of the provided care, but without the structure of the RG.Main outcomes and measuresThe primary outcome was self-reported empowerment, measured with the Netherlands Empowerment List.ResultsA total of 158 participants with SMI (median age, 38 [median absolute deviation, 13] years; 93 men [58.9%]) were randomized to FACT plus RG (n = 80) or FACT as usual (n = 78) care. Intention-to-treat analyses showed that randomization to the RG condition was associated with a clinically significant increase in empowerment (Cohen d, 0.54; 95% CI, 0.21-0.86) and improved outcomes with small to medium effect sizes in terms of quality of life (Cohen d, 0.25; 95% CI, -0.07 to 0.56), personal recovery (Cohen d, 0.38; 95% CI, 0.06-0.69), quality of social contact (Cohen d, 0.24; 95% CI, -0.07 to 0.56), disability (Cohen d, 0.29; 95% CI, -0.03 to 0.60), general functioning (Cohen d, 0.30; 95% CI, -0.01 to 0.62), and social functioning (Cohen d, 0.28; 95% CI, -0.04 to 0.59). No differences between conditions were found regarding psychopathological symptoms, attachment, frequency of social contact, and employment. Compared with FACT as usual, participants who stayed with the assigned treatment in the RG condition were more satisfied with treatment at 9 (Cohen d = 0.45; t135 = -2.62; P = .009) and 18 (Cohen d = 0.41; t116 = -2.22; P = .02) months.Conclusions and relevanceThese findings show that working with RGs improves empowerment and other mental health outcomes in people with SMI who receive community-based mental health services. This method of network-oriented care empowers people with SMI within their own environment.Trial registrationNetherlands Trial Register Identifier: NL6548.

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Improving the quality of life of people with advanced respiratory disease and severe breathlessness.

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Improving the quality of life of people with advanced respiratory disease and severe breathlessness.

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