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The unique information and communication needs of men affected by prostate cancer: A qualitative study of men's experience (2021)
Journal Article
Chen, H., Twiddy, M., Jones, L., & Johnson, M. J. (2021). The unique information and communication needs of men affected by prostate cancer: A qualitative study of men's experience. European Journal of Cancer Care, 30(6), https://doi.org/10.1111/ecc.13503

Objective: The objective of this study is to explore the specific information and communication needs of men affected by prostate cancer to inform the development of educational materials for clinicians. Methods: This is a qualitative descriptive stu... Read More about The unique information and communication needs of men affected by prostate cancer: A qualitative study of men's experience.

“So, when a woman becomes ill, the total structure of the family is affected, they can’t do anything…” Voices from the community on women with breast cancer in India: a qualitative focus group study (2021)
Journal Article
Daniel, S., Venkateswaran, C., Singh, C., Hutchinson, A., & Johnson, M. J. (in press). “So, when a woman becomes ill, the total structure of the family is affected, they can’t do anything…” Voices from the community on women with breast cancer in India: a qualitative focus group study. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, https://doi.org/10.1007/s00520-021-06475-4

Background: Psychological symptoms are common in women with breast cancer and profoundly affect their role in the family and wider community, varying across cultural backgrounds. Breast cancer is becoming the most common cancer among women in India.... Read More about “So, when a woman becomes ill, the total structure of the family is affected, they can’t do anything…” Voices from the community on women with breast cancer in India: a qualitative focus group study.

VAScular and Chronic Obstructive Lung disease (VASCOL): A longitudinal study on morbidity, symptoms and quality of life among older men in Blekinge county, Sweden (2021)
Journal Article
Olsson, M., Engström, G., Currow, D. C., Johnson, M., Sandberg, J., & Ekström, M. (2021). VAScular and Chronic Obstructive Lung disease (VASCOL): A longitudinal study on morbidity, symptoms and quality of life among older men in Blekinge county, Sweden. BMJ open, 11(7), https://doi.org/10.1136/bmjopen-2020-046473

Purpose Despite data showing breathlessness to be more prevalent in older adults, we have little detail about the severity or multidimensional characteristics of breathlessness and other self-reported measures (such as quality of life and other cardi... Read More about VAScular and Chronic Obstructive Lung disease (VASCOL): A longitudinal study on morbidity, symptoms and quality of life among older men in Blekinge county, Sweden.

Professionals’, patients’ and families’ views on the use of opioids for chronic breathlessness: A systematic review using the framework method and pillar process (2021)
Journal Article
Reedy, F., Pearson, M., Greenley, S., Clark, J., Currow, D. C., Bajwah, S., …Johnson, M. J. (in press). Professionals’, patients’ and families’ views on the use of opioids for chronic breathlessness: A systematic review using the framework method and pillar process. Palliative medicine, https://doi.org/10.1177/02692163211032114

Background: In combination with non-pharmacological interventions, opioids may safely reduce chronic breathlessness in patients with severe illness. However, implementation in clinical practice varies. Aim: To synthesise the published literature rega... Read More about Professionals’, patients’ and families’ views on the use of opioids for chronic breathlessness: A systematic review using the framework method and pillar process.

Non-medical devices for chronic breathlessness: use, barriers and facilitators for patients, carers and clinicians - a scoping review (2021)
Journal Article
Prihartadi, A. S., Impelliziere Licastro, G., Pearson, M., Johnson, M. J., Luckett, T., & Swan, F. (in press). Non-medical devices for chronic breathlessness: use, barriers and facilitators for patients, carers and clinicians - a scoping review. BMJ Supportive & Palliative Care, https://doi.org/10.1136/bmjspcare-2021-002962

Background: Non-medical devices such as the handheld fan (fan), mobility aids (wheeled walkers with seats) and inspiratory muscle training (IMT) devices offer benefits for patient management of chronic breathlessness. We examined the published eviden... Read More about Non-medical devices for chronic breathlessness: use, barriers and facilitators for patients, carers and clinicians - a scoping review.

Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services (2021)
Journal Article
Bradshaw, A., Dunleavy, L., Walshe, C., Preston, N., Cripps, R. L., Hocaoglu, M., …Murtagh, F. (2021). Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services. Palliative medicine, 35(7), 1225-1237. https://doi.org/10.1177/02692163211017387

Background: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Des... Read More about Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.

Feasibility, acceptability, and efficacy of online supportive care for individuals living with and beyond lung cancer: a systematic review (2021)
Journal Article
Curry, J., Patterson, M., Greenley, S., Pearson, M., & Forbes, C. (in press). Feasibility, acceptability, and efficacy of online supportive care for individuals living with and beyond lung cancer: a systematic review. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, https://doi.org/10.1007/s00520-021-06274-x

Purpose: To examine the evidence of the feasibility, acceptability, and potential efficacy of online supportive care interventions for people living with and beyond lung cancer (LWBLC). Methods: Studies were identified through searches of Medline, EM... Read More about Feasibility, acceptability, and efficacy of online supportive care for individuals living with and beyond lung cancer: a systematic review.

Breathless and awaiting diagnosis in UK lockdown for COVID-19…We’re stuck (2021)
Journal Article
Doe, G., Chantrell, S., Williams, M., Steiner, M. C., Armstrong, N., Hutchinson, A., & Evans, R. A. (2021). Breathless and awaiting diagnosis in UK lockdown for COVID-19…We’re stuck. NPJ Primary Care Respiratory Medicine, 31(1), Article 21. https://doi.org/10.1038/s41533-021-00232-0

During the COVID-19 pandemic, semi-structured interviews were undertaken with 20 adults awaiting a diagnosis for their chronic breathlessness. Three key themes were identified using thematic analysis: (1) de-prioritisation of diagnosis, (2) following... Read More about Breathless and awaiting diagnosis in UK lockdown for COVID-19…We’re stuck.

Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study (2021)
Journal Article
Seddon, K., Elliott, J., Johnson, M., White, C., Watson, M., Nelson, A., & Noble, S. (2021). Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study. Research Involvement and Engagement, 7(1), Article 22. https://doi.org/10.1186/s40900-021-00264-3

Background: The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people ma... Read More about Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study.

Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: A systematic review (2021)
Journal Article
Akbar, U., McQueen, R. B., Bemski, J., Carter, J., Goy, E. R., Kutner, J., …Kluger, B. (2021). Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: A systematic review. Journal of Neurology, Neurosurgery and Psychiatry, 92(6), 629-636. https://doi.org/10.1136/jnnp-2020-323939

Parkinson's disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other n... Read More about Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: A systematic review.

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis (2021)
Journal Article
Featherstone, I., Hosie, A., Siddiqi, N., Grassau, P., Bush, S. H., Taylor, J., …Johnson, M. J. (2021). The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis. Palliative medicine, 35(6), 988-1004. https://doi.org/10.1177/02692163211006313

Background: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. Aim: To understand patie... Read More about The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis.

‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall) (2021)
Journal Article
Dunleavy, L., Preston, N., Bajwah, S., Bradshaw, A., Cripps, R., Fraser, L. K., …Walshe, C. (2021). ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). Palliative medicine, 35(5), 814-829. https://doi.org/10.1186/ISRCTN16561225

Background: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. A... Read More about ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall).

How physicians in South India recognize, assess, and manage people with chronic breathlessness syndrome: A thematic analysis (2021)
Journal Article
Barnes-Harris, M., Daniel, S., Venkateswaran, C., Hutchinson, A., & Johnson, M. (2021). How physicians in South India recognize, assess, and manage people with chronic breathlessness syndrome: A thematic analysis. Indian Journal of Palliative Care, 27(1), 54-61. https://doi.org/10.4103/IJPC.IJPC_139_20

Objectives: Chronic breathlessness syndrome has been defined to help clinicians actively seek, and patients legitimately present with, persistent breathlessness, and to drive services and research. However, views from low- to middle-income countries... Read More about How physicians in South India recognize, assess, and manage people with chronic breathlessness syndrome: A thematic analysis.

Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: Lung cancers and non-malignant end-stage respiratory diseases (2021)
Journal Article
Barnes-Harris, M., Allingham, S., Morgan, D., Ferreira, D., Johnson, M. J., Eagar, K., & Currow, D. (2021). Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: Lung cancers and non-malignant end-stage respiratory diseases. Thorax, 76(10), 989-995. https://doi.org/10.1136/thoraxjnl-2020-216039

© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ. Background: Malignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burd... Read More about Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: Lung cancers and non-malignant end-stage respiratory diseases.

The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall) (2021)
Journal Article
Oluyase, A. O., Hocaoglu, M., Cripps, R. L., Maddocks, M., Walshe, C., Fraser, L. K., …Higginson, I. J. (in press). The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall). Journal of pain and symptom management, https://doi.org/10.1016/j.jpainsymman.2021.01.138

Context: Systematic data on the care of people dying with COVID-19 are scarce. Objectives: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. Methods: We surve... Read More about The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall).

Group-based Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: an ethnographic study (2021)
Journal Article
Bradshaw, A., Walker, L., Borgstrom, E., & Burke, S. (2021). Group-based Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: an ethnographic study. Qualitative research in sport, exercise and health, 1-17. https://doi.org/10.1080/2159676x.2021.1879918

Advanced, incurable disease is a highly stressful and traumatic life event that can lead to losses of social identity, social connectedness, and losses associated with bodily disintegration. The combination of these losses makes it difficult to remai... Read More about Group-based Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: an ethnographic study.

Indications and patterns of use of benzodiazepines and opioids in severe interstitial lung disease: a population-based longitudinal study (2021)
Journal Article
Genberg, J., Davies, J. M., Ahmadi, Z., Currow, D., Johnson, M. J., Tanash, H., …Ekström, M. (2021). Indications and patterns of use of benzodiazepines and opioids in severe interstitial lung disease: a population-based longitudinal study. ERJ Open Research, 7(1), https://doi.org/10.1183/23120541.00716-2020

Abstract Background Despite evidence that opioids might relieve chronic breathlessness, physicians may still be reluctant to prescribe them due to safety concerns. By contrast, benzodiazepine (BDZ) prescribing often seeks to reduce chronic breathles... Read More about Indications and patterns of use of benzodiazepines and opioids in severe interstitial lung disease: a population-based longitudinal study.

A cluster randomised trial of a Needs Assessment Tool for adult Cancer patients and their carers (NAT-C) in primary care: A feasibility study (2021)
Journal Article
Clark, J., Amoakwa, E., Wright-Hughes, A., Blenkinsopp, J., Currow, D. C., Meads, D., …Johnson, M. (2021). A cluster randomised trial of a Needs Assessment Tool for adult Cancer patients and their carers (NAT-C) in primary care: A feasibility study. PLoS ONE, 16(1), Article e0245647. https://doi.org/10.1371/journal.pone.0245647

Background People with cancer often have unidentified symptoms and social care needs. The Needs Assessment Tool-Cancer (NAT-C) is a validated, structured method of assessing patient/ carer concerns and prompting action, to address unmet need. Aims As... Read More about A cluster randomised trial of a Needs Assessment Tool for adult Cancer patients and their carers (NAT-C) in primary care: A feasibility study.

A feasibility cluster randomised controlled trial of a paramedic-administered breathlessness management intervention for acute-on-chronic breathlessness (BREATHE): Study protocol (2021)
Journal Article
Northgraves, M., Cohen, J., Allgar, V., Currow, D., Hart, S., Hird, K., …Hutchinson, A. (2021). A feasibility cluster randomised controlled trial of a paramedic-administered breathlessness management intervention for acute-on-chronic breathlessness (BREATHE): Study protocol. ERJ Open Research, https://doi.org/10.1183/23120541.00955-2020

Introduction: Chronic breathlessness, persistent and disabling despite optimal treatment of underlying causes, is a prevalent and frightening symptom and is associated with many emergency presentations and admission to hospital. Breathlessness manage... Read More about A feasibility cluster randomised controlled trial of a paramedic-administered breathlessness management intervention for acute-on-chronic breathlessness (BREATHE): Study protocol.