‘Our voice started off as a whisper and now it is a great big roar’ : The Salford Dementia Associate Panel as a model of involvement in research activities

This paper presents the work of the ‘Salford Dementia Associate Panel’, based at the Salford Institute for Dementia, Salford University (UK). We discuss the roles of the Dementia Associates, in particular around the areas of engagement and research. The panel is made up of people living with dementia, and current and former care partners. It highlights the development of this group over a four-year period and demonstrates over time how the role of a Dementia Associate member has evolved. The panel is involved in research, education and public engagement activities conducted by staff and students within the Institute. The motivations for becoming involved are clearly articulated and demonstrate how the personal backgrounds of individuals have driven the collective involvement and desire to bring about change. The benefits and challenges associated with working as part of a panel are discussed. We conclude by bringing together our experiences as a set of suggestions for others who may wish to create a similar forum to promote the involvement of people living with dementia and former and current care partners

Stigma and the in(visible) perspectives and expectations of home oxygen therapy among people with chronic breathlessness syndrome: A qualitative study

© The Author(s) 2018. Background: Chronic breathlessness syndrome in the context of advancing disease is distressing for all concerned. Oxygen is commonly prescribed in this setting; however, little is known about the perspectives of breathless people who either are on oxygen or are yet to have it prescribed. Aim: To understand and describe the perspectives and experiences of breathless people towards oxygen use at home. Design: This qualitative study utilised an interpretive description approach using semi-structured interviews and thematic analysis. Setting/participants: A total of 19 people with chronic breathlessness syndrome living in South Australia participated in semi-structured interviews. Participants were divided into sub-groups according to whether they were chronically breathless and (1) not using home oxygen (n = 6), (2) using funded home oxygen for severe hypoxaemia (n = 7) and (3) using home oxygen for palliation outside of funding guidelines (n = 6). Results: Three main themes were identified: (1) managing distress and living with chronic breathlessness syndrome, with or without oxygen, requires a range of self-management strategies; (2) expectations of oxygen use: ‘Not as good as I thought it would be’; and (3) the stigma of using oxygen: the visible and invisible. Conclusion: People living with chronic breathlessness struggle daily with both the progression of the underlying disease and the distressing nature of the syndrome. While oxygen does provide benefit for some people, its use and the perceptions of its use are often associated with both the visible and invisible manifestations of stigma. Clinicians need to promote self-management strategies and give careful thought to the prescribing of home oxygen, especially outside the current funding guidelines

The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis

Motor neurone disease/amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, where death is usually secondary to progressive respiratory failure. Assisting people with ALS through their disease journey is complex and supported by clinics that provide comprehensive multidisciplinary care (MDC). This review aims to apply both a respiratory and a complexity lens to the key roles and areas of practice within the MDC model in ALS. Models of noninvasive ventilation care, and considerations in the provision of palliative therapy, respiratory support, and speech and language therapy are discussed. The impact on people living with ALS of both inequitable funding models and the complexity of clinical care decisions are illustrated using case vignettes. Considerations of the impact of emerging antisense and gene modifying therapies on MDC challenges are also highlighted. The review seeks to illustrate how MDC members contribute to collective decision-making in ALS, how the sum of the parts is greater than any individual care component or health professional, and that the MDC per se adds value to the person living with ALS. Through this approach we hope to support clinicians to navigate the space between what are minimum, guideline-driven, standards of care and what excellent, person-centred ALS care that fully embraces complexity could be

Health-related quality of life in patients with inoperable malignant bowel obstruction: secondary outcome from a double-blind, parallel, placebo-controlled randomised trial of octreotide.

BACKGROUND:This analysis aims to evaluate health-related quality of life (HrQoL) (primary outcome for this analysis), nausea and vomiting, and pain in patients with inoperable malignant bowel obstruction (IMBO) due to cancer or its treatments randomised to standardised therapies plus octreotide or placebo over a maximum of 72 h in a double-blind clinical trial. METHODS:Adults with IMBO and vomiting recruited through 12 services spanning inpatient, consultative and community settings in Australia were randomised to subcutaneous octreotide infusion or saline. HrQoL was measured at baseline and treatment cessation (EORTC QLQ-C15-PAL). Mean within-group paired differences between baseline and post-treatment scores were analysed using Wilcoxon Signed Rank test and between group differences estimated using linear mixed models, adjusted for baseline score, sex, age, time, and study arm. RESULTS:One hundred six of the 112 randomised participants were included in the analysis (n = 52 octreotide, n = 54 placebo); 6 participants were excluded due to major protocol violations. Mean baseline HrQoL scores were low (octreotide 22.1, 95% CI 14.3, 29.9; placebo 31.5, 95% CI 22.3, 40.7). There was no statistically significant within-group improvement in the mean HrQoL scores in the octreotide (p = 0.21) or placebo groups (p = 0.78), although both groups reported reductions in mean nausea and vomiting (octreotide p < 0.01; placebo p = 0.02) and pain scores (octreotide p < 0.01; placebo p = 0.03). Although no statistically significant difference in changes in HrQoL scores between octreotide and placebo were seen, an adequately powered study is required to fully assess any differences in HrQoL scores. CONCLUSION:The HrQoL of patients with IMBO and vomiting is poor. Further research to formally evaluate the effects of standard therapies for IMBO is therefore warranted. TRIAL REGISTRATION:Australian New Zealand Clinical Trials Registry ACTRN12608000211369 (date registered 18/04/2008)

Soft Chemical Control of Superconductivity in Lithium Iron Selenide Hydroxides Li1–x_{1–x}Fex_x(OH)Fe1–y_{1–y}Se

Hydrothermal synthesis is described of layered lithium iron selenide hydroxides Li$_{1–x}$Fex(OH)Fe$_{1–y}$Se (x$\sim$0.2; 0.02 < $y$ < 0.15) with a wide range of iron site vacancy concentrations in the iron selenide layers. This iron vacancy concentration is revealed as the only significant compositional variable and as the key parameter controlling the crystal structure and the electronic properties. Single crystal X-ray diffraction, neutron powder diffraction, and X-ray absorption spectroscopy measurements are used to demonstrate that superconductivity at temperatures as high as 40 K is observed in the hydrothermally synthesized samples when the iron vacancy concentration is low ($y$ < 0.05) and when the iron oxidation state is reduced slightly below +2, while samples with a higher vacancy concentration and a correspondingly higher iron oxidation state are not superconducting. The importance of combining a low iron oxidation state with a low vacancy concentration in the iron selenide layers is emphasized by the demonstration that reductive postsynthetic lithiation of the samples turns on superconductivity with critical temperatures exceeding 40 K by displacing iron atoms from the Li$_{1–x}$Fe$_x$(OH) reservoir layer to fill vacancies in the selenide layer

The need to research refractory breathlessness

High-quality research is needed to improve quality of life for people with chronic refractory breathlessness in COP

Chronic refractory dyspnoea: Evidence based management

Background: Chronic refractory dyspnoea is defined as breathlessness daily for 3 months at rest or on minimal exertion where contributing causes have been treated maximally. Prevalent aetiologies include chronic obstructive pulmonary disease, heart failure, advanced cancer and interstitial lung diseases. Objective: To distil from the peer reviewed literature (literature search and guidelines) evidence that can guide the safe, symptomatic management of chronic refractory dyspnoea. Discussion: Dyspnoea is mostly multifactorial. Each reversible cause should be managed (Level 4 evidence). Non-pharmacological interventions include walking aids, breathing training and, in chronic obstructive pulmonary disease, pulmonary rehabilitation (Level 1 evidence). Regular, low dose, sustained release oral morphine (Level 1 evidence) titrated to effect (with regular aperients) is effective and safe. Oxygen therapy for patients who are not hypoxaemic is no more effective than medical air. If a therapeutic trial is indicated, any symptomatic benefit is likely within the first 72 hours

Academic detailing of general practitioners by a respiratory physician for diagnosis and management of refractory breathlessness: A randomised pilot study Organization, structure and delivery of healthcare

© 2015 Collier et al.; licensee BioMed Central. Background: Academic detailing (AD; also known as educational visiting) facilitates the translation of evidence into practice and has been widely adopted internationally to facilitate practice change. The potential of AD linked to a specific patient and delivered by a specialist physician to general practitioners has not been evaluated. This pilot study assessed the feasibility and acceptability of AD on the knowledge and confidence of GPs caring for people with advanced cancer who had breathlessness at the end of life. Methods: In this randomised controlled pilot, 35 patient/GP dyads were randomised to AD or usual care. Key messages included: ensuring reversible causes were optimally treated; non-pharmacological and pharmacological treatments were considered; and oxygen considered for hypoxaemic patients. Results: Acceptability: The majority of GPs randomised to AD agreed to participate, reporting benefits to practice. The majority of GPs in the control group requested a copy of academic detailing written materials at study completion. Feasibility: AD visits to GPs' offices could be timetabled reasonably easily, with 24 detailing visits occurring. Self-reported knowledge and beliefs: Ninety two percent of GPs reported the topics covered in the AD sessions were useful, with 83 % reporting an increase in knowledge and confidence. AD sessions resulted in 58 % of GPs reporting a change in their approach to the management of breathlessness. By contrast, 81 % of the usual care group reported low confidence in the management and knowledge of breathlessness. Conclusion: AD was acceptable and feasible to participating GPs. This pilot supports proceeding to a fully powered study

Isolating peripheral effects of endogenous opioids in modulating exertional breathlessness in people with moderate or severe COPD: a randomised controlled trial.

Question addressed by the study: Endogenous opioids (endorphins) have been reported to modulate exercise-induced breathlessness, but the relative contribution of peripheral opioid receptors has not been tested. Materials participants and methods: This was a double-blind, randomised, three-arm, cross-over trial in outpatients with spirometry-verified moderate to severe chronic obstructive pulmonary disease. Participants undertook an incremental symptom-limited treadmill test followed by five endurance treadmill tests at 75% of their maximal work rate; two tests for familiarisation and three tests 30 min after intravenous injection of either methylnaltrexone 0.3 mg·kg-1 (blocking peripheral opioid receptors only) or naloxone 0.1 mg·kg-1 (blocking both central and peripheral opioid receptors) or normal saline, in randomised order. The primary end-point was the regression slope between breathlessness intensity (0-10 numerical rating scale) and oxygen consumption (V'O2 ) during the walk tests, comparing methylnaltrexone and placebo using a paired t-test. Results: 17 participants completed the trial: median (range) 66 (55-82) years; 15 males; mean±sd forced expiratory volume (FEV1) 53.8±17.6% predicted; FEV1/forced vital capacity ratio 0.55±15.9. There was no statistically or clinically significant difference in the primary end-point (regression slope of breathlessness intensity and V'O2 ) for methylnaltrexone (p=0.498) or naloxone (p=0.804), compared to placebo. Secondary outcomes were similar between the three treatment groups, including peak and mean breathlessness intensity and unpleasantness, exercise capacity, endurance time and leg fatigue. Answer to the question: Blocking peripheral opioid receptors (methylnaltrexone) or peripheral and central opioid receptors (naloxone) did not appear to modulate breathlessness intensity nor exercise capacity when compared with placebo (no blockade)