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

Abstract

IntroductionRegular, 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.AimThis study aimed to explore patients’ and caregivers’ experiences with regular, low-dose, sustained-release morphine for chronic breathlessness associated with COPD.MethodsA 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.ResultsThirteen 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.ConclusionClinicians’ 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.

Is being able to walk to the letterbox life-changing? A qualitative assessment of measures of improvement in persistent breathlessness

“…Results suggest functional improvement is a key driver of perceived benefit, which seems to be accompanied by clinically meaningful reductions in CRQ-dyspnoea [6], appreciable improvements in mMRC scores and an increase in active steps/day. Compared to participants reporting small or no benefit, super-responders reported that they could do more meaningful activities [5]. More importantly, they actually engaged in such activities, which is not always the case for people who increase their functional capacity [7].…”

“…There was an optional 6-month blinded extension using the dose prescribed in week 3. 13 patients and, separately, their caregivers were interviewed about their experiences of persistent breathlessness before and after initiating the study medication as part of a pre-planned qualitative study [ 5 ]. Interviews were conducted at participants’ homes, while the participants and interviewer were still blinded.…”

“… SR: sustained-release; NRS: Numerical Rating Scale; mMRC: modified Medical Research Council scale; CRQ: Chronic Respiratory Disease Questionnaire; AKPS: Australian Karnofsy Performance Status; VAS: visual analogue scale; ZBI-12: Zarit Burden Interview. # : participant 1 was participant 2 in the qualitative study previously published [ 5 ]. ¶ : participant 2 was participant 6 in the qualitative study previously published [ 5 ].…”

“…# : participant 1 was participant 2 in the qualitative study previously published [ 5 ]. ¶ : participant 2 was participant 6 in the qualitative study previously published [ 5 ]. + : baseline values are mean scores across 2 days; week 1 and 3 values are mean scores of the last 3 days of each week (corresponding to morphine steady-state plasma concentrations).…”

“…Compared to participants reporting small or no benefit, super-responders reported that they could perform more meaningful activities [ 5 ]. More importantly, they actually engaged in such activities, which is not always the case for people who increase their functional capacity [ 7 ].…”