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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

ABSTRACT 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. There is evidence available for the efficacy of pharmacological treatments, cognitive behavioural therapy, pulmonary rehabilitation, relaxation therapy and palliative care in COPD. Therapeutic modalities that have not been proven effective in decreasing anxiety and depression in COPD, but which have theoretical potential among patients, include interpersonal psychotherapy, self-management programmes, more extensive disease management programmes, supportive therapy and self-help groups. Besides pulmonary rehabilitation that is only available for a small percentage of patients, management guidelines make scant reference to other options for the treatment of mental health problems. The quantity and quality of research on mental health treatments in COPD have historically been insufficient to support their inclusion in COPD treatment guidelines. In this review, recommendations regarding assessment, treatment and future research in this important field were made. [ABSTRACT FROM AUTHOR]

The article presents a study which examined the association of breathlessness with the severity of impairment in airflow obstruction. The researchers used an observational and prospective approach to describe the sensation of breathlessness experienced by patients with chronic obstructive pulmonary disease (COPD). They found that affective descriptors of breathlessness sensation can lead to long-term behavioral changes.

The article presents a study which examines the language of breathlessness as differentiated between patients with chronic obstructive pulmonary disease and age-matched adults. It was undertaken uniformly for all subjects and was assessed at rest using a 10-cm visual analog scale for breathlessness intensity and dyspnea scale for any resperatory disability. The study results to clear differences in the quality, variety and frequency of the subjects as to their language of breathlessness.

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. [ABSTRACT FROM AUTHOR]

(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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

Background and objectives: The fifteen-count breathlessness score (15CBS) has been reported to quantify breathlessness; however, a ceiling effect limits its ability to discriminate between subjects with varying degrees of breathlessness. The aim of this study was to determine the reliability, sensitivity, specificity and validity of the thirty-count breathlessness score (30CBS) in adults with COPD. Methods: Using an observational correlation design, subjects with clinical signs and symptoms of COPD were videotaped performing the 30CBS on two occasions. Respiratory related quality of life questionnaires, self-report shortness breathlessness measures and pulmonary function tests were completed by all subjects. Asymptomatic subjects of a similar age completed the 30CBS for comparison. Results: Thirty-eight COPD subjects and 24 control subjects completed the protocol. The 30CBS was reliable within and between assessors (intraclass correlation coefficients >0.7). The 30CBS demonstrated a higher sensitivity (55.8% sensitivity, 82.3% specificity) than the 15CBS (33.2% sensitivity, 93.2% specificity); however, the sensitivity of the 30CBS was still not great enough to discriminate between those with and without COPD. Regression analysis calculated significant relationships between the 30CBS and a majority of measures of pulmonary impairment (flows and volumes), age, height, Visual Analogue Scale for breathlessness and physical aspects of the Short Form-36. Conclusions: While reliable, the 30CBS did not display sufficient discriminative ability to predict subjects with COPD though subjects requiring greater than two breaths may warrant further investigation. The 30CBS may be a useful indicator of physiological impairment, but was not significantly correlated with measures of breathlessness. [ABSTRACT FROM AUTHOR]

Objective and background: The Fifteen-Count Breathlessness Score (15CBS) has been reported to quantify breathlessness. The aim of this study was to determine the reliability and validity of the 15CBS in adults with COPD. Methods: Using an observational correlation design, subjects with clinical signs and symptoms of COPD were videotaped performing the 15CBS at a self-selected (task 1) and an 8-s counting pace (task 2), on two occasions with 5-min rest between attempts. Respiratory-related quality of life questionnaires, self-report shortness of breath measures and pulmonary function tests were completed by all subjects. Results: Thirty subjects completed the protocol. No significant differences and good linear relationships were calculated for the 15CBS within subjects (task 1 P = 0.32, r = 0.75 and task 2 P = 1.00, r = 0.86) and between assessors (task 1 P = 0.57, r = 0.99 and task 2 P = 0.21, r = 0.75). No significant relationships were evident between the 15CBS and shortness of breath or quality of life scores. Significant relationships existed between the 15CBS and FVC (litres and per cent predicted). Conclusion: Most subjects completed the 15CBS using one breath, limiting discrimination between subjects with differing degrees of breathlessness. Although data from this study confirmed that the 15CBS is a reliable procedure within people with COPD, further modification is required to increase the validity and discriminative ability of this instrument. [ABSTRACT FROM AUTHOR]

ABSTRACT 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. [ABSTRACT FROM AUTHOR]

Abstract: 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. [Copyright &y& Elsevier]

Aim: To determine, in Australian chronic obstructive pulmonary disease (COPD) outpatients, the prevalence of nutritional depletion, adequacy of dietary intake and relationship between nutritional depletion and clinical indicators. Methods: Cross-sectional study of 66 stable COPD outpatients (mean forced expiratory volume in one second (FEV1) of 60% predicted (95% confidence interval 54, 67) ). Nutritional status was assessed using body mass index (BMI) and fat-free mass index (FFMI). Four-day estimated food records were compared with the new Australian Nutrient Reference Values. Clinical indicators included respiratory function and quality of life (QoL) using the St George Respiratory Questionnaire. Results: Thirty per cent of subjects (n = 20) were nutritionally depleted (BMI < 20 kg/m2 and/or FFMI < 16.7 kg/m2 (male) or <14.6 kg/m2 (female) ). Low FFMI despite normal/high BMI was present in 20% of subjects (n = 13). Many subjects were not meeting estimated requirements for energy (n = 43 of 57), calcium (n = 47), fibre (n = 47), folate (n = 37), magnesium (n = 28) and zinc (n = 14). Nutritionally depleted subjects had significantly lower respiratory function (FEV1 (% predicted) ( P = 0.003) and FEV1/forced vital capacity (%) ( P = 0.038) ), while QoL scores were not significantly different. Conclusion: While nutritional depletion is a recognised complication of COPD that is predictive of early mortality, this is the first nutritional analysis of stable ambulatory COPD patients in Australia. One-third of this sample was nutritionally depleted, characterised particularly by low fat-free mass. Intake of energy and several nutrients was also inadequate. Prompt diagnosis and treatment of nutritional depletion are required, as it is highly prevalent in this population and associated with poorer outcomes. [ABSTRACT FROM AUTHOR]

A response by Marie Therese Williams, Timothy Olds, and John Petkov to a letter to the editor about their article "The language of breathlessness differentiates between patients with chronic obstructive pulmonary disease and age-matched adults" in the September 2008 issue is presented.