Nothando Ngwenya1,2, Clare Crang2, Morag Farquhar3, Robert C Rintoul4,5, Ravi Mahadeva6, Lori D Calvert7, Scott A Murray8, Stephen Barclay2. 1. Social Science and Research Ethics Department, Africa Health Research Institute, KwaZulu-Natal, South Africa. 2. Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK. 3. School of Health Sciences, University of East Anglia, Norwich, UK. 4. Department of Oncology, Royal Papworth Hospital NHS Foundation Trust, Cambridge, UK. 5. Department of Oncology, University of Cambridge, UK. 6. Respiratory Medicine, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK. 7. North West Anglia Hospitals NHS Foundation Trust, Cambridgeshire, UK. 8. Primary Palliative Care Research Group, University of Edinburgh, Edinburgh, UK.
Abstract
BACKGROUND: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes. OBJECTIVE: This study sought to identify factors that impact communication and support and recommend ways to improve patients' understanding of living with life-threatening illness. METHODS: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010-12. RESULTS: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians. CONCLUSIONS: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the 'breaking bad news' conversation that oncologists are highly trained to deliver.
BACKGROUND: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes. OBJECTIVE: This study sought to identify factors that impact communication and support and recommend ways to improve patients' understanding of living with life-threatening illness. METHODS: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010-12. RESULTS: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians. CONCLUSIONS: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the 'breaking bad news' conversation that oncologists are highly trained to deliver.
Authors: Richard F Catalano; Martie L Skinner; Gina Alvarado; Chisina Kapungu; Nicola Reavley; George C Patton; Cassandra Jessee; Daniel Plaut; Caitlin Moss; Kristina Bennett; Susan M Sawyer; Meroji Sebany; Magnolia Sexton; Christina Olenik; Suzanne Petroni Journal: J Adolesc Health Date: 2019-04-19 Impact factor: 5.012
Authors: Elke Arnoldina Theodora Maas; Scott A Murray; Yvonne Engels; Christine Campbell Journal: BMJ Support Palliat Care Date: 2013-12 Impact factor: 3.568
Authors: Tim Luckett; Aljon San Martin; David C Currow; Miriam J Johnson; Matilda Mm Barnes-Harris; Jane L Phillips Journal: Palliat Med Date: 2020-07-28 Impact factor: 4.762
Authors: Helena Elkington; Patrick White; Julia Addington-Hall; Roger Higgs; Catherine Pettinari Journal: Respir Med Date: 2004-05 Impact factor: 3.415
Authors: Hayley R Thomas; Laura Deckx; Nicolas A Sieben; Michele M Foster; Geoffrey K Mitchell Journal: Fam Pract Date: 2020-09-05 Impact factor: 2.267