Patients' and caregivers' experiences of driving with chronic breathlessness before and after regular low-dose sustained-release morphine: A qualitative study.

BACKGROUND: Chronic breathlessness is a disabling syndrome that profoundly impacts patients' and caregivers' lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving. AIM: To understand patients' and caregivers' (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving. DESIGN: A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (⩽32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted. SETTING/PARTICIPANTS: Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients (n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers (n = 9). RESULTS: Participants were interviewed at home. Eleven received morphine 8-32 mg. Three themes emerged: (1) independence; (2) breathlessness' impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine. CONCLUSION: Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.

Two faces of the same coin: a qualitative study of patients' and carers' coexistence with chronic breathlessness associated with chronic obstructive pulmonary disease (COPD).

BACKGROUND: Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant support. Although individual experiences of breathlessness have been previously investigated, there are few studies exploring contemporaneous experiences of breathlessness of the patient and their carer. This study aimed to understand the experience of severe chronic breathlessness in people with chronic obstructive pulmonary disease (COPD) from the perspective of the patient and carer unit. METHODS: A qualitative study embedded in a randomised, placebo-controlled effectiveness study (RCT) of regular, low-dose (≤32 mg/day), sustained-release morphine for chronic breathlessness associated with COPD. Recruitment occurred between July 2017 and November 2018 in one respiratory and palliative care services, in South Australia. Participants were community-dwelling patients with COPD and severe breathlessness (modified Medical Research Council scale 3 or 4) and their carers. Separate semi-structured interviews were conducted with patients and carers, recorded and transcribed verbatim. Analysis was informed by grounded theory using a constant comparative approach. RESULTS: From the 26 patients with a carer recruited for the RCT in South Australia, nine were interviewed in their homes. Six patients were men, median age 77 years. Carers were mostly women, who were their wives (n = 6), median age 70. Five themes emerged from the data: (1) shrinking world; (2) mutual adaptation; (3) co-management; (4) emotional coping; and (5) meaning in the face of death. CONCLUSION: Chronic breathlessness is a systemic condition that permeates all aspects of the patient's and carer's lives. Working as a team, patients and carers manage chronic breathlessness to achieve maximal function and well-being. Patients and carers share many aspects of the experience of breathlessness, but the carer seems particularly susceptible to emotional distress. Future chronic breathlessness interventions should target the patient and the carer, both together and separately to address their common and individual needs. TRIAL REGISTRATION: The main trial is registered (registration no. NCT02720822; posted March 28, 2016).

Patients' and their caregivers' experiences with regular, low-dose, sustained-release morphine for chronic breathlessness associated with COPD: a qualitative study.

INTRODUCTION: Regular, low-dose, sustained-release morphine is effective in reducing chronic breathlessness in people with advanced disease, particularly in patients with chronic obstructive pulmonary disease (COPD). Despite experiencing a reduction in breathlessness, some patients choose not to continue long-term treatment. AIM: This study aimed to explore patients' and caregivers' experiences with regular, low-dose, sustained-release morphine for chronic breathlessness associated with COPD. METHODS: A qualitative study embedded in a randomised controlled trial (RCT) of regular low-dose, sustained-release morphine for chronic breathlessness for people with COPD and modified Medical Research Council breathlessness scale 3-4. After completing the RCT or withdrawing, patients and their caregivers were invited to participate in interviews in their homes focused on their experiences with the trial medication while still blinded to the arm to which they had been allocated. Data analysis used a constant comparative method informed by the principles of grounded theory. RESULTS: Thirteen patients and nine caregivers participated. Four themes were identified: (1) Receptivity and knowledge; (2) Function as a priority; (3) Harmful and helpful side effects; and (4) Therapy-centred aspects. The concept of 'net effect' emerged from the interplay between themes, subthemes and the decision to continue taking sustained-release morphine during the trial and after trial completion. CONCLUSION: Clinicians' support and preconceived ideas about morphine influence the decision to commence sustained-release morphine. The hope for functional improvement is the great driver influencing positively the decision to take sustained-release morphine in the long term. The degree of symptom reduction, improved function, side-effects' severity and caregivers' availability creates a net effect driving patients' decisions to continue or discontinue the medication.

No gender-related bias in COPD diagnosis and treatment in Sweden: a randomised, controlled, case-based trial.

INTRODUCTION: COPD is a major cause of morbidity and mortality. The prevalence, morbidity and mortality of COPD among females have increased. Previous studies indicate a possible gender bias in the diagnosis and management of COPD. The present study aims to determine if there is gender bias in the management of COPD in Sweden. METHODS: This was a double-blind, randomised (1:1), controlled, parallel-group, web-based trial using the hypothetical case scenario of a former smoker (40 pack-years and quit smoking 3 years ago) who was male or female. The participants were blind to the randomisation and the purpose of the trial. The case progressively revealed more information with associated questions on how the physician would manage the patient. Study participants chose from a list of tests and treatments at each step of the case scenario. RESULTS: In total, 134 physicians were randomised to a male (n=62) or a female (n=72) case. There was no difference in initial diagnosis (61 (98%) male cases and 70 (97%) female cases diagnosed with COPD) and planned diagnostic procedures between the male and female cases. Spirometry was chosen by all the physicians as one of the requested diagnostic tests. The management of the hypothetical COPD case did not differ by sex of the responding physician. CONCLUSION: In Sweden, diagnosis and management of a hypothetical patient with COPD did not differ by the gender of the patient or physician.