Living with Advanced Chronic Obstructive Pulmonary Disease: A Qualitative Interview Study with Patients and Informal Carers

Figures & data

Table 1. Inclusion and exclusion criteria for patients and informal carers.

Inclusion criteria patients	Exclusion criteria patients
Adults (>18 years old) Formally diagnosed (spirometry) and documented (in medical chart) advanced COPD (GOLD classification 3–4) Outpatients in the respiratory care service Fluent in Italian Competent and willing to sign informed consent sheet	Inability to join consultations as outpatient Hospitalisation at the time of recruitment Palliative care recipients (as outlined in medical charts) Concurrent oncological disease
Inclusion criteria informal carers	Exclusion criteria informal carers
Adults (>18 years old) Identified by patients with COPD as relative/friend who provides care at home Fluent in Italian Competent and willing to sign informed consent sheet	Inability to join consultations as informal carer

Table 2. Thematic interview guide for semistructured interviews with patients.

Symptom control
What are the most bothering symptoms right now? What are the strategies you adopt to control these symptoms? Do you benefit from the prescribed treatments? Do they help in controlling your symptoms?
Experiences with advanced COPD
What do you know about your illness? Can you tell me for how long have you been living with your illness? Does COPD limit your daily life activities? How would you judge your current quality of life? Do you often think about the future?
Current care provision
How would you describe your current care provision? What would you like to change in your current care provision? What do you expect from your healthcare professionals?
Palliative care provision
Have you ever heard about supportive or palliative care? Now that I have explained the definition of palliative care to you, can you tell me what you think about this type of care provision? Do you think palliative care may be useful for you?

Table 3. Thematic interview guide for semistructured interviews with informal carers.

Symptom control
What are the most frightening symptoms you observe in your husband/wife/father/mother? What are the strategies you adopt with your husband/wife/father/mother to control these symptoms?
Experiences with advanced COPD
What do you know about advanced COPD? Can you tell me for how long has your husband/wife/father/mother been living with COPD? How does COPD affect your life as an informal carer? How would you judge your current quality of life? Do you often think about the future?
Current care provision
How would you describe the current care provision of your husband/wife/father/mother? What would you like to change in this current care provision? What do you expect from healthcare professionals caring for your husband/wife/father/mother?
Palliative care provision
Have you ever heard about supportive or palliative care? Now that I have explained its definition to you, can you tell me what you think about this type of care provision? Do you think palliative care may be useful for your husband/wife/father/mother?

Table 4: Main demographic characteristics of interviewed patients.

Participants	Age (years)	Gender	Educational level	Smoking status	Pack-years	FEV1	Exacerbations per year	GOLD classification	mMRC dyspnoea scale	CAT
Patients
P1	65	Male	Primary school	Former smoker	80 py	28%	4	GOLD 4D	Grade 4	30
P2	63	Female	Middle school	Current smoker	40 py	45%	1	GOLD 3A	Grade 1	9
P3	72	Male	High school	Former smoker	60 py	28%	2	GOLD 4D	Grade 3	25
P4	76	Female	University	Current smoker	50 py	36%	1	GOLD 3B	Grade 2	20
P5	70	Male	Middle school	Current smoker	80 py	40%	2	GOLD 3D	Grade 3	26
P6	71	Male	University	Former smoker	60 py	28%	3	GOLD 4D	Grade 3	28
P7	73	Female	High school	Current smoker	70 py	29%	3	GOLD 4D	Grade 3	25
P8	68	Male	Middle school	Current smoker	60 py	28%	1	GOLD 4B	Grade 4	35
P9	69	Male	Middle school	Former smoker	40 py	35%	3	GOLD 3D	Grade 3	26
P10	74	Male	Primary school	Former smoker	80 py	27%	3	GOLD 4D	Grade 4	33
P11	68	Male	High school	Current smoker	50 py	26%	4	GOLD 4D	Grade 3	30
P12	65	Male	University	Former smoker	50 py	28%	4	GOLD 4D	Grade 3	29
P13	72	Female	High school	Current smoker	45 py	37%	2	GOLD 3D	Grade 3	22
P14	70	Female	Middle school	Current smoker	35 py	40%	1	GOLD 3B	Grade 2	21
P15	66	Male	Middle school	Current smoker	60 py	27%	3	GOLD 4D	Grade 4	34
P16	65	Male	High school	Former smoker	40 py	38%	1	GOLD 3B	Grade 2	20
P17	69	Male	High school	Former smoker	45 py	28%	3	GOLD 4D	Grade 3	30
P18	67	Female	Middle school	Current smoker	40 py	42%	2	GOLD 3D	Grade 3	28
P19	68	Male	Middle school	Former smoker	30 py	44%	1	GOLD 3B	Grade 2	23
P20	70	Male	Primary school	Current smoker	80 py	26%	4	GOLD 4D	Grade 4	36

Table 5. Main demographic characteristics of interviewed informal carers.

Participants	Age (years)	Gender	Educational level	Relationship with patients	Smoking status	Pack-years
Informal carers
IC1	59	Female	Primary school	Wife of P1	Never smoker	–
IC2	76	Female	Middle school	Wife	Never smoker	–
IC3	65	Female	Middle school	Wife of P5	Former smoker	20 py
IC4	47	Female	Middle school	Close friend	Never smoker	–
IC5	39	Female	High school	Daughter	Never smoker	–
IC6	65	Female	High school	Wife of P6	Never smoker	–
IC7	42	Female	Middle school	Niece of P7	Current smoker	20 py
IC8	64	Female	Middle school	Wife	Former smoker	25 py
IC9	38	Male	University	Son	Never smoker	–
IC10	35	Female	University	Daughter	Never smoker	–
IC11	62	Female	High school	Wife	Former smoker	40 py
IC12	63	Male	Middle school	Husband of P13	Current smoker	50 py
IC13	41	Male	High school	Son	Never smoker	–
IC14	72	Female	Middle school	Wife	Former smoker	30 py
IC15	71	Female	Middle school	Sister	Never smoker	–
IC16	37	Female	University	Daughter of P14	Never smoker	–
IC17	70	Female	Middle school	Wife	Current smoker	40 py
IC18	59	Male	University	Husband	Current smoker	45 py
IC19	64	Female	Middle school	Wife	Never smoker	–
IC20	61	Female	Middle school	Wife	Former smoker	20 py

Table

Main themes	Subthemes
Living day to day with COPD	Causes, symptoms and complications Daily activities Dealing with the disease Talking about the disease
Psychosocial dimension of COPD	Guilt/blame Stigma Fear Loss
Management of complex care in COPD	Care network Healthcare professionals Type of desired care provision Support groups Awareness and role of palliative care