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. Content-coding of interventions targeting the PWB of MND carers using BCTTv1 was conducted. RESULTS: Sixteen manuscripts describing 14 studies were included. Forty-one of the possible 93 behavior change techniques (BCTs, 44%) were identified as active ingredients, while 52 BCTs (56%) were absent. BCTs were identified in all 14 intervention groups and 4 control groups. Four of the 16 overall BCTTv1 categories were absent. Eleven of the 14 studies demonstrated PWB benefits from their interventions. SIGNIFICANCE OF RESULTS: Identified and absent BCTs and BCTTv1 categories were mapped for all study groups, enabling a transparent characterization of active intervention content associated with positive PWB outcomes. Directions to improve interventions in this nascent field of research included the investigation of relevant untested BCTs in this population and the management of reporting and methodological quality issues.

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 n = 52 or CPRP + SC n = 49). Primary outcomes (Hospital Anxiety and Depression scale (HADs), six-minute walk distance (6MWD)) and secondary outcomes (breathlessness, quality of life and habitual physical activity) were assessed before and 1, 6 and 12 months post intervention. Between-group differences were calculated with mixed models for each time point to baseline (intention to treat (ITT)). Participants (n = 101, mean ± SD age 70 ± 8.5 years, 54 (53%) males, FEV1% pred 47.7 ± 16.3) were similar between groups. Post intervention, primary outcomes did not differ significantly between groups at 1 (6MWD mean difference -7.5 [95% CI -34.3 to 19.4], HADs-A -0.3 [-1.4 to 0.9], HADs-D 0.2 [-0.8 to 1.3]), 6 (6MWD -11.5 [-38.1 to 15.1], HADs-A 1.1 [0.0 to 2.2], HADs-D 0.2 [-0.9 to 1.3]), or 12 months (6MWD -3.8 [-27.2 to 19.6], HADS-A -0.4 [-1.5 to 0.6], HADs-D -0.7 [-1.7 to 0.4]). (4) Conclusions: In this cohort, combining CBT with a CPRP did not provide additional health benefits beyond those achieved by a standard CPRP.

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). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems. SIGNIFICANCE OF RESULTS: This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.

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. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. RESULTS: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. CONCLUSION: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.

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

BACKGROUND: 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. Methods: 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. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

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

BACKGROUND: 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. Methods: 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. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

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. Effectiveness was measured through a composite event of patient survival to hospitalisation, residential care admission or death to 12 months. Secondary outcomes at baseline, 3, 6 and 12 months included carer and patient emotional and physical well-being. No difference between intervention (n = 100) and control (n = 97) patients was found for the composite outcome (hazard ratio (HR) 1.22, 95% confidence interval (CI) = 0.89, 1.68; p = 0.22). Improved fatigue, mastery, vitality and general health occurred in intervention group patients (all p values < 0.05). No benefits were seen in carer outcomes. Mortality was significantly higher in intervention patients (HR = 2.01, 95% CI = 1.00, 4.14; p = 0.05; adjusted for Australia-modified Karnofsky Performance Status), with a significant diagnosis-intervention interaction (p = 0.028) showing higher mortality in patients with COPD (HR 4.26; 95% CI = 1.60, 11.35) but not those with interstitial lung disease (HR 0.83; 95% CI = 0.28, 2.46). No difference was detected in the primary outcome, but patient mortality was higher when carers had received the intervention, especially in the most disabled patients. Trials examining behavioural change interventions in severe disease should stratify for functionality, and both risks and benefits should be independently monitored. Trial registration: Australian New Zealand Clinical Trials Registry (ACTRN12607000177459).

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. The primary outcome "COPD exacerbation days per patient per year" was assessed using intention-to-treat analyses.No significant difference was observed in the number of COPD exacerbation days per patient per year (self-management: median 9.6 (interquartile range (IQR) 0.7-31.1); UC: median 15.6 (IQR 3.0-40.3); incidence rate ratio (IRR) 0.87 (95% CI 0.54; 1.39); p=0.546). There was a significantly shorter duration per COPD exacerbation for self-management (self-management: median 8.1 (IQR 4.8-10.1) days; UC: median 9.5 (IQR 7.0-15.1) days; p=0.021), with no between-group differences in the total number of respiratory hospitalisations (IRR 0.76 (95% CI 0.42; 1.35); p=0.348), but a lower probability of ≥1 for respiratory-related hospitalisation compared to UC (relative risk 0.55 (95% CI 0.35; 0.87); p=0.008). No between-group differences were observed in all-cause hospitalisations (IRR 1.07 (95% CI 0.66; 1.72)) or mortality (self-management: n=4 (3.9%); UC: n=7 (7.1%); relative risk 0.55 (95% CI 0.17; 1.84)).Patient-tailored exacerbation action plans for COPD patients with comorbidities did not significantly reduce exacerbation days, but reduced the duration per COPD exacerbation and the risk of having at least one respiratory-related hospitalisation during follow-up, without excess all-cause mortality.

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. Studies showed that management of respiratory diseases is inadequate. In this article, we have elaborated on how factors as health economic factors, lack of health-care providers, culture, attitude, lifestyle (such as smoking and physical inactivity), and lack of adherence to the evidence-based practice guidelines may influence chronic respiratory disease management in Saudi Arabia. We have to conclude that these factors should be taken into account while seeking to improve and optimize the quality of care for patients with respiratory diseases in Saudi Arabia.

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

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. We therefore aimed to assess and synthesize the knowledge about maximizing MND-related psychosocial wellbeing across all these groups. METHOD: We used a systematic search and selection process to assess the scope of the literature along with a narrative synthesis of recent high-quality reviews. RESULTS: The original studies were mainly observational studies of patients and, to a lesser extent, of carers. There were few interventional studies, mainly of patients. There were very few studies of any type on wellbeing in their wider social network or in healthcare professionals. All the review literature looked at MND patient or carer wellbeing, with some covering both. No reviews were found of wellbeing in other family members, patients' social networks, or their healthcare professionals. The reviews demonstrated wellbeing problems for patients linked to psychosocial issues. Carer wellbeing is also compromised. Psychotherapies, social supports, improved decision supports, and changes to healthcare delivery are among the suggested strategies for improved patient and carer wellbeing, but no proven interventions were identified for either. Early access to palliative care, also not well-tested but recommended, is poorly implemented. SIGNIFICANCE OF RESULTS: Work on interventions to deal with well-established wellbeing problems for patients and carers is now a research priority. Explicit use of current methods for patient and public involvement and for design and testing of interventions provide a toolkit for this research. Observational research is needed in other groups. There is a potential in considering needs across patients' social networks rather than looking individually at particular groups.

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. Systematic reviews were undertaken for each question and recommendations made with the strength of each recommendation based on the GRADE (Gradings of Recommendations, Assessment, Development and Evaluation) criteria. The Guidelines were externally reviewed by a panel of experts. RESULTS: The Guideline panel recommended that patients with mild-to-severe COPD should undergo PR to improve quality of life and exercise capacity and to reduce hospital admissions; that PR could be offered in hospital gyms, community centres or at home and could be provided irrespective of the availability of a structured education programme; that PR should be offered to patients with bronchiectasis, interstitial lung disease and pulmonary hypertension, with the latter in specialized centres. The Guideline panel was unable to make recommendations relating to PR programme length beyond 8 weeks, the optimal model for maintenance after PR, or the use of supplemental oxygen during exercise training. The strength of each recommendation and the quality of the evidence are presented in the summary. CONCLUSION: The Australian and New Zealand Pulmonary Rehabilitation Guidelines present an evaluation of the evidence for nine PICO questions, with recommendations to provide guidance for clinicians and policymakers.

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. Health care providers involved in treatment of chronic obstructive pulmonary disease (COPD) patients were recruited from 22 general government hospitals. Data were collected using questionnaires: Full version if they had heard about PR before the study, and a short version if they had not heard about PR before. RESULTS: A total of 123 health care providers were recruited (physicians [n = 44], nurses [n = 49], and respiratory therapists/technicians [n = 30]). Only 3.2% of the recruited health care providers had heard about PR programs before. According to the health care providers, the main barriers for setting up PR programs were a lack of (1) hospital capacity (75.6%), (2) trained health care providers (72.4%), and (3) funds (48.0%). There were significant differences in barriers reported by the health care providers. Compared to physicians, nurses were more likely to nominate the PR costs as a barrier (18.0% vs. 38.8%; P < 0.05). CONCLUSION: There is a worrisome lack of knowledge regarding content and benefits of PR programs among Saudi health care providers treating COPD patients. These findings imply that improving awareness and increasing education of the health care providers regarding PR will be required before PR can be more widely implemented as an integral treatment modality for patients with COPD in 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). The information provided was used to modify the definition for the next consensus round. Thematic analysis was used for free text responses and descriptive statistics were used for agreement scores.In total, 28 experts participated. The consensus round response rate varied randomly over the five rounds (ranging from 48% (n=13) to 85% (n=23)), and mean definition agreement scores increased from 3.8 (round 1) to 4.8 (round 5) with an increasing percentage of experts allocating the highest score of 5 (round 1: 14% (n=3); round 5: 83% (n=19)).In this study we reached consensus regarding a conceptual definition of what should be a COPD self-management intervention, clarifying the requisites for such an intervention. Operationalisation of this conceptual definition in the near future will be an essential next step.

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 14.2% among smokers. Not much is known about current health care services for patients with COPD in Saudi Arabia. The objective of this study was to determine the current care services for patients with COPD provided by government hospitals in the Eastern province of Saudi Arabia. METHODS: A cross-sectional study was conducted in the Eastern province of Saudi Arabia. Directors of the Department of Internal Medicine from all 22 general government hospitals that are under the responsibility of the Ministry of Health or the Ministry of Higher Education in this region were asked to participate. Data were collected using a questionnaire. RESULTS: The study results indicated that there are limited hospital facilities for patients with COPD: no respiratory departments in any of the included hospitals, no spirometry in 77.3% of the hospitals, no intensive care units in 63.7% of the hospitals, and no pulmonary rehabilitation program in any of the hospitals. Among the included 22 hospitals, 24 respiratory physicians, 29 respiratory therapists, and three physiotherapists were involved in COPD care. CONCLUSION: In conclusion, current care services provided by government hospitals in the Eastern province of Saudi Arabia for patients with COPD do not meet international recommendations for COPD management. Increased awareness, knowledge, and implementation of COPD guidelines by health care providers will most probably improve COPD management in Saudi Arabia. In addition, the government could improve dissemination of information about COPD management through national programs and by offering specific education regarding respiratory diseases.

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. The search yielded 318 papers of which 287 were excluded after applying selection criteria. Two areas emerged in which there was consistent evidence of benefit of social support; namely mental health and self-efficacy. There was inconsistent evidence for a relationship between perceived social support and quality of life, physical functioning and self-rated health. Hospital readmission was not associated with level of perceived social support. Only a small number of studies (3 articles) have reported on the social network of individuals with COPD. There remains a need to identify the factors that promote and enable social support. In particular, there is a need to further understand the characteristics of social networks within the broader social structural conditions in which COPD patients live and manage their illness.

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. When appropriate, outcomes from the pilot group (comprehensive pulmonary rehabilitation program + BREVE) were compared with those from a retrospective control group (comprehensive pulmonary rehabilitation program only). Outcomes included feedback provided by pilot study subjects, sensation of breathlessness (volunteered and endorsed descriptors of breathlessness), 6-min walk distance (6MWD), and St George Respiratory Questionnaire (SGRQ) total score. Within-group analyses were undertaken for descriptors of breathlessness (the McNemar test), whereas between-group analyses (repeated-measures analysis of variance, effect-size comparison) were conducted for the 6MWD and SGRQ total score. RESULTS: Pilot (n = 11) and control (n = 58) groups were not significantly different at baseline. Feedback indicated that the program structure and content were positively received. No significant changes were evident for the sensation of breathlessness or the SGRQ score (< 4 points). The 6MWD improved significantly in both groups, with the pilot group demonstrating greater gains compared with the control group (mean change of 57 m and effect size of 0.73 vs mean change of 27 m and effect size of 0.23; between groups, P = .03, effect size of 0.69). CONCLUSION: The CBT program for the perceptual experience of breathlessness was feasible and well accepted by subjects, although the protocol raised a number of methodological limitations warranting modification. A larger randomized controlled trial is needed to determine the effectiveness and longer-term outcomes.

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). Health outcomes included dyspnoea, anxiety, depression, quality of life or functional exercise capacity. Standardized mean differences (SMD) were calculated for each intervention arm/control comparison. Across the 12 included studies (738 participants), compared with control conditions, SMD consistently favoured interventions which included both exercise + psychological components (SMD range dyspnoea -1.63 to -0.25; anxiety -0.50 to -0.20; depression -0.46 to -0.18; quality of life 0.09 to 1.16; functional exercise capacity 0.22 to 1.23). When compared with active comparators, SMD consistently favoured interventions that included exercise training + psychological component for dyspnoea (SMD range -0.35 to -0.97), anxiety (SMD range -0.13 to -1.00) and exercise capacity (SMD range 0.64 to 0.71) but were inconsistent for depression (-0.11 to 1.27) and quality of life (0.02 to -2.00). The magnitude of effect for most interventions was greater than the minimum required for clinical significance (i.e. > 0.32) in behavioural medicine. While interventions, outcomes and effect sizes differed substantially between studies, combining exercise training with a psychological intervention may provide a means of optimizing rehabilitation in people with COPD.

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. The COPE-III SM intervention combines (I) patient-initiated action plans that are tailored to the individual's co-morbid disease(s), and (II) ongoing nurse support. In this paper we provide information regarding the integration of information from two previous COPD SM studies (COPE I and II) in the development of the current COPE-III ST approach. MATERIALS AND METHODS: COPE-III ST materials include daily symptom diaries and action plans that take patient's common comorbidities [chronic heart failure (CHF), anxiety, depression, ischaemic heart disease (IHD), and diabetes] into account. The comorbid diary and action plans components were developed in collaboration with multiple disease-experts. RESULTS: Previous SM studies have highlighted some essential topics that need to be considered when developing a SM or ST approach: 'when to initiate ST', 'how to optimize materials and safety', and 'how to achieve behavioural change'. In the COPE-III study, ST is initiated after a significant change in symptoms. This is consistent with the COPE-II approach and was implemented because disease symptoms are often present even when patients are stable. We have tried to ensure patient safety by providing an easily accessible case-manager to patients throughout their involvement in the study. Furthermore, a psychologist has ensured the use of behavioural change techniques throughout the intervention. CONCLUSIONS: We should continue to learn from our experiences with SM interventions to further optimize future SM and ST interventions. The use of materials that are suitable for different levels of patient literacy and the training of health care providers are other points of improvement.

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. We hypothesise that this approach, which combines self-initiated action plans and nurse support, will accelerate proper treatment actions and lead to better control of deteriorating symptoms. METHODS: In this multicenter randomised controlled trial we aim to include 300 patients with COPD (GOLD II-IV), and with at least one comorbidity (cardiovascular disease, diabetes, anxiety and/or depression). Patients will be recruited from hospitals in the Netherlands (n = 150) and Australia (n = 150) and will be assigned to an intervention or control group. All patients will learn to complete daily symptom diaries for 12-months. Intervention group patients will participate in self-management training sessions to learn the use of individualised action plans for COPD and comorbidities, linked to the diary. The primary outcome is the number of COPD exacerbation days. Secondary outcomes include hospitalisations, quality of life, self-efficacy, adherence, patient's satisfaction and confidence, health care use and cost data. ANALYSES: Intention-to-treat analyses (random effect negative binomial regression and random effect mixed models) and cost-effectiveness analyses will be performed. DISCUSSION: Prudence should be employed before extrapolating the use of COPD specific action plans in patients with comorbidities. This study evaluates the efficacy of tailored action plans for both COPD and common comorbidities.

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. Significant proportional shifts for sensory categories after rehabilitation were identified using the McNemar test. Random effects mixed modeling was used to determine significance of differences for primary outcomes between subjects modifying or not modifying descriptors of breathlessness. RESULTS: Of the 107 people referred to the pulmonary rehabilitation program, 94 met the spirometric criteria for COPD, with 58 having data for pre and post assessments (36 males, 71 ± 9 years old, percent of predicted FEV(1) 58 ± 24%). A significant proportion of subjects reduced descriptors of air hunger (P = .03, odds ratio 0.31, 95% CI 0.09-0.89) and depressed, regret, helpless (P = .04, odds ratio 0.36, 95% CI 0.10-1.05) following rehabilitation. Subjects reducing their use of descriptors of air hunger had greater improvements in the 6MWD after rehabilitation (P = .006, mean increase 46 m). CONCLUSIONS: The sensory quality of breathlessness was modified for approximately one third of subjects after pulmonary rehabilitation, with significant improvements in the 6MWD for subjects who reduced their use of descriptors of air hunger.