Identifying the active content of interventions targeting the psychological well-being of carers of people with motor neuron disease: A systematic review.

Objectives: The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness of interventions targeting the PWB of MND carers could be better explained through improved characterization of the active content of these interventions.

Methods: Mixed-methods systematic review based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Pulmonary Rehabilitation with and without a Cognitive Behavioral Intervention for Breathlessness in People Living with Chronic Obstructive Pulmonary Disease: Randomized Controlled Trial.

(1) Background: Most controlled trials of cognitive behavior therapy (CBT) in people living with chronic obstructive pulmonary disease (COPD) have targeted anxiety and depression. (2) Methods: This pragmatic randomized controlled trial explored whether a comprehensive pulmonary rehabilitation program (CPRP) with CBT for breathlessness or social group control (CPRP + SC) significantly improved health outcomes. (3) Results: People with moderate-to-severe COPD were block randomized (CPRP + CBT = 52 or CPRP + SC = 49).

Interventions targeting psychological well-being for motor neuron disease carers: A systematic review.

Objectives: This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions.

Method: Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Results: Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative).

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective.

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown.

Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care.

Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia.

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease.

Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. : An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia.

Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study.

Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included.

Pragmatic randomised controlled trial of a personalised intervention for carers of people requiring home oxygen therapy.

We used a pragmatic randomised controlled trial to evaluate a behavioural change strategy targeting carers of chronically hypoxaemic patients using long-term home oxygen therapy. Intervention group carers participated in personalised educational sessions focusing on motivating carers to take actions to assist patients. All patients received usual care.

Exacerbation action plans for patients with COPD and comorbidities: a randomised controlled trial.

This international randomised controlled trial evaluated whether COPD patients with comorbidities, trained in using patient-tailored multidisease exacerbation action plans, had fewer COPD exacerbation days than usual care (UC).COPD patients (Global Initiative for Chronic Obstructive Lung Disease (GOLD) classification II-IV) with ≥1 comorbidity (ischaemic heart disease, heart failure, diabetes, anxiety, depression) were randomised to a patient-tailored self-management intervention (n=102) or UC (n=99). Daily symptom diaries were completed for 12 months.

Factors influencing management of chronic respiratory diseases in general and chronic obstructive pulmonary disease in particular in Saudi Arabia: An overview.

The prevalence of chronic obstructive pulmonary disease in Saudi Arabia is 4.2% among the general population and 14.2% among smokers.

Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis.

Unlabelled: ABSTRACTObjective:Disease management in motor neurone disease (MND) is focused on preserving quality of life. However, the emphasis has so far been on physical symptoms and functioning and not psychosocial wellbeing. MND affects the wellbeing of carers, of family and social network members, and of healthcare providers, as well as of the patients.

Australian and New Zealand Pulmonary Rehabilitation Guidelines.

Background And Objective: The aim of the Pulmonary Rehabilitation Guidelines (Guidelines) is to provide evidence-based recommendations for the practice of pulmonary rehabilitation (PR) specific to Australian and New Zealand healthcare contexts.

Methods: The Guideline methodology adhered to the Appraisal of Guidelines for Research and Evaluation (AGREE) II criteria. Nine key questions were constructed in accordance with the PICO (Population, Intervention, Comparator, Outcome) format and reviewed by a COPD consumer group for appropriateness.

Barriers for setting up a pulmonary rehabilitation program in the Eastern Province of Saudi Arabia.

Background: Pulmonary rehabilitation (PR) programs proven to be one of the most effective treatment options for respiratory diseases; yet, they are not well-established in hospitals in Saudi Arabia.

Aim: To determine the main barriers for setting up PR programs in Saudi Arabia.

Methods: A cross-sectional study was conducted in the Eastern Province of Saudi Arabia.

Definition of a COPD self-management intervention: International Expert Group consensus.

There is an urgent need for consensus on what defines a chronic obstructive pulmonary disease (COPD) self-management intervention. We aimed to obtain consensus regarding the conceptual definition of a COPD self-management intervention by engaging an international panel of COPD self-management experts using Delphi technique features and an additional group meeting.In each consensus round the experts were asked to provide feedback on the proposed definition and to score their level of agreement (1=totally disagree; 5=totally agree).

Current care services provided for patients with COPD in the Eastern province in Saudi Arabia: a descriptive study.

Background: COPD is a leading cause of morbidity and mortality worldwide. The prevalence rate of COPD in the general Saudi population is estimated to be 2.4% and 14.

Social Support and Social Networks in COPD: A Scoping Review.

A scoping review was conducted to determine the size and nature of the evidence describing associations between social support and networks on health, management and clinical outcomes amongst patients with COPD. Searches of PubMed, PsychInfo and CINAHL were undertaken for the period 1966-December 2013. A descriptive synthesis of the main findings was undertaken to demonstrate where there is current evidence for associations between social support, networks and health outcomes, and where further research is needed.

Cognitive Behavioral Therapy for Management of Dyspnea: A Pilot Study.

Background: In patients with COPD, psychological interventions usually target generalized anxiety and depression rather than the sensation of breathlessness. The objectives of this pilot study were to develop and implement a cognitive behavioral therapy (CBT) program specific to the perceptual experience of breathlessness, identify practical issues in the study protocol, and estimate beneficial effects of combining the CBT program with comprehensive pulmonary rehabilitation.

Methods: The CBT program for the sensation of breathlessness (Breathing: Recognize sensations, Explore thoughts and beliefs, Validate thoughts as useful or harmful, Evolve and change behavior [BREVE]) was developed as a sequential series of 8 modules enabling it to be embedded within an 8-week comprehensive pulmonary rehabilitation program.

Development of a self-treatment approach for patients with COPD and comorbidities: an ongoing learning process.

Background: Patient-initiated action plans are an important component of COPD self-management (SM) interventions. When integrated into SM interventions, these action plans have proven to be effective in reducing exacerbation severity, hospitalisations, and costs and in improving health status in patients with COPD without severe comorbidities. Because of overlap in symptoms, a self-treatment (ST) approach that focuses solely on traditional symptoms of COPD is inadequate for patients with COPD and comorbidities.

Exercise training combined with psychological interventions for people with chronic obstructive pulmonary disease.

Previous systematic reviews have confirmed the benefits of both exercise training and psychological interventions in people with chronic obstructive pulmonary disease (COPD). The objective of this systematic review was to examine the effect of interventions which combine exercise training and psychological interventions for a range of health outcomes in people with COPD. Database searches identified randomized controlled trials of people with COPD participating in interventions that combined exercise training with a psychological strategy compared with control (usual care, waiting list) or active comparators (education, exercise, psychological interventions alone).

A self-management approach using self-initiated action plans for symptoms with ongoing nurse support in patients with Chronic Obstructive Pulmonary Disease (COPD) and comorbidities: the COPE-III study protocol.

Background: Chronic Obstructive Pulmonary Disease (COPD) frequently coexists with other diseases. Whereas COPD action plans are currently part of usual care, they are less suitable and potentially unsafe for use in the presence of comorbidities. This study evaluates whether an innovative treatment approach directed towards COPD and frequently existing comorbidities can reduce COPD exacerbation days.

A reduction in the use of volunteered descriptors of air hunger is associated with increased walking distance in people with COPD.

Background: This study investigated whether descriptors of breathlessness differed after participation in an 8 week pulmonary rehabilitation program and whether changes in sensory quality would be reflected in responsiveness to pulmonary rehabilitation.

Methods: People with COPD provided descriptors for their sensation of breathlessness before and after an 8 week pulmonary rehabilitation program. Primary outcomes for responsiveness to pulmonary rehabilitation were the 6 minute walk distance (6MWD) and the St George Respiratory questionnaire.

Treatments for anxiety and depression in patients with chronic obstructive pulmonary disease: a literature review.

Chronic obstructive pulmonary disease (COPD) is a serious contemporary health issue. Psychological co-morbidities such as anxiety and depression are common in COPD. Current evidence for treatment options to reduce anxiety and depression in patients with COPD was examined.

Affective descriptors of the sensation of breathlessness are more highly associated with severity of impairment than physical descriptors in people with COPD.

Background: Previous studies of the qualitative sensation of breathlessness have suggested that greater sensory discomfort is reported as airflow obstruction increases. This study investigated relationships between the language of breathlessness and severity of impairment in subjects with COPD.

Methods: Using a prospective, observational approach, subjects completed a structured interview in which they volunteered words to describe their sensation of breathlessness and endorsed statements from a preexisting descriptor list.

Quality of recalled dyspnoea is different from exercise-induced dyspnoea: an experimental study.

Questions: Are volunteered and endorsed descriptors of recalled breathlessness consistent with descriptors of exercise-induced breathlessness? Are volunteered and endorsed descriptors of exercise-induced breathlessness consistent?

Design: Within-participant, repeated measures, experimental study.

Participants: 57 people with symptomatic chronic respiratory disease aged 71 years.

Intervention: There were three conditions.

The language of breathlessness differentiates between patients with COPD and age-matched adults.

Background: If descriptors of the sensation of breathlessness are able to differentiate between medical conditions, the language of breathlessness could potentially have a role in differential diagnosis. This study investigated whether the language used to describe the sensation of breathlessness accurately categorized older individuals with and without a prior diagnosis of COPD.

Methods: Using a parallel-group design, participants with and without a prior diagnosis of COPD volunteered words and phrases and endorsed up to three statements to describe their sensation of breathlessness.