Research and Healthcare Priorities of Individuals Living with COPD

Figures & data

Figure 1. Participant flow chart.

Abbreviations: Activities, Healthcare and Research Priorities Survey (AHRPS); Chronic Obstructive Pulmonary Disease (COPD); forced expiratory volume in 1-sec (FEV₁); Forced vital capacity (FVC); Lower Limit of Normal (LLN); Quartiles 1-4 of airflow obstruction (Q1-4); modified Medical Research Council breathlessness questionnaire (mMRC); breathlessness burden and exacerbation risk groups A-D (Group A-D).

Table 1. Participants demographic information by quartiles of disease severity.

	Overall n = 148	Quartile 1 (Mild AO) n = 37	Quartile 2 (Moderate AO) n = 37	Quartile 3 (Severe AO) n = 37	Quartile 4 (Very Severe AO) n = 37
Description	Mean (SD)	Mean (SD)	Mean (SD)	Mean (SD)	Mean (SD)	F (df)^†	p-value
Age	67.8 (8.75)	69.0 (10.1)	71.2 (8.7)	66.5 (7.4)	64.4 (7.4)	4.64 (3)	.004
FEV1%predicted	49.6 (23.2)	79.0 (21.5)	55.6 (5.5)	38.5 (4.8)	25.2 (4.5)	55.89 (3)	.000
FEV1/FVC	49.1 (11.8)	60.5 (8.5)	53.8 (8.5)	44.1 (8.9)	38.1 (7.9)	149.73 (3)	.000
Description	n (%)	n (%)	n (%)	n (%)	n (%)	χ^2 (df)	Cramer’s V
Sex						7.38 (3)	.22
Male	77 (52)	16 (43)	15 (41)	22 (60)	24 (65)
Female	71 (48)	21 (57)	22 (60)	15 (41)	13 (35)
Ethnicity						3.98 (3)	.16
Other	9 (6)	1 (3)	2 (5)	3 (8)	4 (11)
White	134 (91)	36 (97)	31 (84)	34 (92)	33 (89)
Marital Status						7.03 (3)	.22
Single/Divorced/Widowed	64 (43)	20 (54)	17 (46)	17 (46)	10 (27)
Married/Common Law	79 (54)	16 (43)	16 (43)	20 (54)	27 (73)
Education						3.41 (3)	.15
High School or less	61 (42)	11 (30)	15 (41)	16 (43)	19 (51)
Above High School	82 (55)	25 (68)	18 (49)	21 (57)	18 (49)
Employment						0.77 (3)	.07
Full-time/Part-time	20 (14)	6 (16)	4 (11)	4 (11)	6 (16)
Unemployed/Retired/Disability	123 (83)	30 (81)	29 (78)	33 (89)	31 (84)
Household Income						0.64 (3)	.07
Under $60,000 CAD	82 (55)	21(57)	19 (51)	21 (57)	21 (57)
Above $60,000 CAD	37 (25)	8 (22)	8 (22)	9 (24)	12 (32)
Smoking						6.12 (3)	.21
Never smoked tobacco	5 (3)	2 (5)	3 (8)	0	0
Ever smoked tobacco	137 (92)	34 (92)	30 (81)	36 (97)	37 (100)
Spirometric diagnosis of COPD
FEV1/FVC: <0.70 & <LLN	128 (86)	–	–	–	–	–	–
FEV1/FVC: <0.70 & >LLN	20 (14)	–	–	–	–	–	–
FEV1/FVC: >0.70 & <LLN	0 (0)	–	–	–	–	–	–
CAT total score						5.47 (3)	.19
<10	24 (16)	10 (27)	5 (14)	6 (16)	3 (8)
≥10	122 (82)	26 (70)	32 (87)	30 (81)	34 (92)
mMRC						25.87 (3)*	.30
0-1	47 (32)	20 (54)	15 (41)	7 (19)	5 (14)
≥2	99 (67)	15 (41)	22 (60)	30 (81)	32 (87)
PR attendance						9.62 (3)*	.26
Yes	67 (45)	10 (27)	14 (38)	20 (54)	23 (62)
No	75 (51)	26 (70)	18 (49)	17 (46)	14 (38)
Exacerbation in past 12 months						10.23 (3)*	.28
Yes	56 (38)	15 (41)	15 (41)	21 (57)	27 (73)
No	78 (52)	17 (46)	18 (49)	14 (38)	7 (19)
Comorbidities
Myocardial infarction	8 (5.4)	3 (8.1)	0 (0)	2 (5.4)	3 (8.1)	N/A
Congestive heart failure	11 (7.4)	3 (8.1)	2 (5.4)	3 (8.1)	3 (8.1)	N/A
Peripheral vascular disease	5 (3.4)	4 (10.8)	1 (2.7)	0 (0)	0 (0)	N/A
Cerebrovascular disease	2 (1.4)	1 (2.7)	0 (0)	0 (0)	1 (2.7)	N/A
Dementia	0 (0)	0 (0)	0 (0)	0 (0)	0 (0)	N/A
Connective tissue disease	3 (2.0)	2 (5.4)	1 (2.7)	0 (0)	0 (0)	N/A
Peptic ulcer disease	1 (0.7)	0 (0)	1 (2.7)	0 (0)	0 (0)	N/A
Diabetes Meletus	12 (8.1)	3 (8.1)	3 (8.1)	2 (5.4)	4 (10.8)	N/A
Chronic kidney disease	3 (2.0)	1 (2.7)	0 (0)	1 (2.7)	1 (2.7)	N/A
Hemiplegia	0 (0)	0 (0)	0 (0)	0 (0)	0 (0)	N/A
Cancer	18 (12.2)	5 (13.5)	6 (16.2)	3 (8.1)	4 (10.8)	N/A
Liver disease	4 (2.0)	0 (0)	1 (2.7)	1 (2.7)	1 (2.7)	N/A
HIV/AIDS	1 (0.7)	0 (0)	0 (0)	1 (2.7)	0 (0)	N/A
Asthma	47 (31.8)	10 (27.0)	15 (40.5)	10 (27.0)	12 (32.4)	2.09 (3)	.12
Glaucoma	9 (6.1)	1 (2.7)	4 (10.8)	3 (8.1)	1 (2.7)	N/A

Note: Overall column shows data for all participants (n = 148), while other four columns show data by quartiles of disease severity for the 148 individuals who had a forced expiratory volume in 1-sec to forced vital capacity ratio <0.70 (n = 37 in each). * = p < 0.05; ^†Homogeneity of variance failed, so a non-parametric independent samples test was run (Independent-samples Kruskal-Wallis test). Abbreviations: airflow obstruction (AO); Lower Limit of Normal (LLN); COPD assessment test (CAT); modified-Medical Research Council Questionnaire on breathlessness (mMRC); pulmonary rehabilitation (PR); Standard deviation (SD); degrees of freedom (df). N/A indicated a χ² test that cannot be conducted as some of the expected values are below 5, which is the minimum expected value criteria for χ².

Figure 2. Overall research priorities (n = 148).

Note: Research priorities presented in descending order from the priority selected by the most participants to the priority selected by the least participants.

Table 2. Top five research priorities by frequency of selection.

Overall Research Priorities (n = 148)	Quartile 1, Mild AO (n = 37)	Quartile 2, Moderate AO (n = 37)	Quartile 3, Severe AO (n = 37)	Quartile 4, Very Severe AO (n = 37)
To relieve breathlessness in adults living with COPD (n = 113; 76%) To prevent the development of COPD (n = 85; 57%) To prevent lung flare-ups in adults living with COPD (n = 74; 50%) To increase the ability of adults living with COPD to exercise (n = 70; 47%) To improve the maximal amount of exercise of adults living with COPD in and out of the home (n = 68; 46%)	To relieve breathlessness in adults living with COPD (n = 28; 76%)	To relieve breathlessness in adults living with COPD (n = 29; 78%)	To relieve breathlessness in adults living with COPD (n = 26; 70%)	To relieve breathlessness in adults living with COPD (n = 30; 81%)
	2) To improve the maximal amount of exercise of adults living with COPD in and out of the home (n = 21; 57%)	2) To prevent the development of COPD (n = 26; 70%)	2) To prevent the development of COPD (n = 22; 59%)	2) To prevent lung flare-ups in adults living with COPD (n = 24; 65%)
	3) To increase the ability of adults living with COPD to exercise (n = 20; 54%)	3) To prevent lung flare-ups in adults living with COPD (n = 18; 49%)	3) To increase the ability of adults living with COPD to exercise (n = 17; 46%)	3) To improve the maximal amount of exercise of adults living with COPD in and out of the home (n = 20; 54%)
	4) To prevent the development of COPD (n = 18; 49%)	4) To increase the ability of adults living with COPD to exercise (n = 14; 38%)	4) To improve the maximal amount of exercise of adults living with COPD in and out of the home (n = 15; 41%)	4) To improve access to lung transplantation (n = 20;5 4%)
	5) To prevent lung flare-ups in adults living with COPD (n = 18; 49%)	5) To avoid hospitalizations due to COPD (n = 14; 38%)	5) To avoid hospitalizations due to COPD (n = 15; 41%)	5) To prevent the development of COPD (n = 19; 51%)
				5) To increase the ability of adults living with COPD to exercise (n = 19; 51%)
	Group A, Low breathlessness burden + low exacerbation risk (n = 27)	Group B, High breathlessness burden + low exacerbation risk (n = 50)	Group C, Low breathlessness burden + high exacerbation risk (n = 14)	Group D, High breathlessness burden + high exacerbation risk (n = 40)
	To relieve breathlessness in adults living with COPD (n = 20; 74%)	To relieve breathlessness in adults living with COPD (n = 40; 80%)	1) To prevent the development of COPD (n = 9; 64%)	To relieve breathlessness in adults living with COPD (n = 31; 78%)
	2) To prevent the development of COPD (n = 15; 56%)	2) To prevent the development of COPD (n = 30; 60%)	2) To improve access to lung transplantation (n = 8; 57%)	2) To prevent lung flare-ups in adults living with COPD (n = 21; 53%)
	3) To prevent lung flare-ups in adults living with COPD (n = 14; 52%)	3) To increase the ability of adults living with COPD to exercise (n = 29; 58%)	3) To increase the public’s knowledge and understanding of COPD (n = 8; 57%)	3) To prevent the development of COPD (n = 20; 50%)
	4) To increase the ability of adults living with COPD to exercise (n = 11; 41%)	4) To improve the maximal amount of exercise of adults living with COPD in and out of the home (n = 29; 58%)	4) To relieve breathlessness in adults living with COPD (n = 7; 50%)	4) To improve the maximal amount of exercise of adults living with COPD in and out of the home (n = 18; 45%)
	5) To avoid hospitalizations due to COPD (n = 11; 41%)	5) To prevent lung flare-ups in adults living with COPD (n = 24; 48%)	4) To increase the ability of adults living with COPD to exercise (n = 7; 50%)	5) To increase autonomy of adults living with COPD (less reliant on others) (n = 17; 43%)
			4) To avoid hospitalizations due to COPD (n = 7; 50%)

Note: Percentage of respondents calculated based on each subgroup. Indicates the percentage of people in each group who selected the research topic. AO = airflow obstruction; COPD = chronic obstructive pulmonary disease.

Figure 3. Research priorities by quartiles of airflow obstruction (n = 148).

Note: Research priorities are presented in the same order as the overall priorities in Figure 2, and not by frequency of selection. The percentage value beside each priority represents the percentage of individuals in the quartile who selected the priority. The first and second most commonly selected research priorities in each quartile are outlined in red.

Figure 4. Research priorities by breathlessness burden and exacerbation risk group classification (n = 130).

Note: Research priorities are presented in the same order as the overall priorities in Figure 2, and not by the frequency of selection. The percentage value beside each priority represents the percentage of individuals in the group who selected the priority. The first and second most commonly selected research priorities in each group are outlined in red.

Table 3. Chi-squared (χ²) for research priorities of each comparison group.

Research Priorities	Airflow Obstruction (n = 148)		Breathlessness Burden and Exacerbation Risk (n = 130)
	χ^2 (3)	V^†	χ^2 (3)	V^†
To relieve breathlessness in adults living with COPD.	1.31	.09	5.57	.21
To increase the ability of adults living with COPD to exercise.	2.28	.12	5.02	.20
To improve the maximal amount of exercise of adults living with COPD in and out of the home.	5.88	.20	9.97*	.28
To increase autonomy of adults living with COPD (less reliant on others).	1.73	.11	4.13	.18
To prevent lung flare-ups in adults living with COPD (e.g., lung infection and exacerbations).	5.51	.19	4.63	.19
To prevent the development of COPD.	4.28	.17	1.29	.10
To decrease reliance on COPD medication.	8.14*	.24	5.46	.21
To decrease the side effects of COPD medication(s).	2.31	.13	1.31	.10
To improve the ability of adults to use COPD medication(s) (e.g., inhaler).	4.00	.16	1.38	.10
To improve access to lung transplantation.	9.79*	.26	4.72	.19
To avoid hospitalizations due to COPD.	.11	.03	5.06	.20
To avoid hospitalizations due to other chronic illnesses.	1.22	.09	1.73	.12
To decrease anxiety in adults living with COPD.	2.41	.13	.30	.05
To decrease depression in adults living with COPD.	4.69	.18	1.58	.11
To increase effectiveness of pulmonary rehabilitation (exercise training) for adults living with COPD.	2.45	.13	.09	.03
To increase the development and accessibility of additional resources (e.g., smoking cessation, physical activity, nutrition) for adults living with COPD.	7.61	.23	9.59*	.27
To decrease the impact and symptom burden of health conditions other than COPD.	.61	.06	7.80*	.25
To increase convenience of COPD medication use.	3.04	.14	3.44	.16
To identify alternative therapies for the management of COPD symptoms (e.g., opioids).	1.18	.09	4.27	.18
To reduce impact of COPD on social isolation.	.93	.08	8.57*	.26
To increase the public’s knowledge and understanding of COPD.	2.74	.14	8.48*	.26
To increase access of peer support for individuals with COPD (i.e., speak with others about living with COPD)	5.37	.19	3.56	.17

Notes: *p < 0.05; ^†V = Cramer’s V. Abbreviations: Chronic Obstructive Pulmonary Disease (COPD); Global Initiative for Obstructive Lung Disease (GOLD); pulmonary rehabilitation (PR).

Figure 5. Overall healthcare priorities (n = 148).

Note: Healthcare priorities presented in descending order from the priority selected by the most participants to the topic selected by the least participants. Abbreviations: Chronic Obstructive Pulmonary Disease (COPD); Quality of life (QOL).

Figure 6. Healthcare priorities by quartiles of airflow obstruction (n = 148).

Note: Healthcare priorities are presented in the same order as the overall priorities in Figure 5, and not the frequency of selection. The percentage value beside each priority represents the percentage of individuals in the quartile who selected the priority. The first and second most commonly selected healthcare priorities in each quartile are outlined in red.

Table 4. Top five healthcare priorities by frequency of selection.

Overall Healthcare Priorities (n = 148)	Quartile 1, Mild AO (n = 37)	Quartile 2, Moderate AO (n = 37)	Quartile 3, Severe AO (n = 37)	Quartile 4, Very severe AO (n = 37)
1) Relief of breathlessness (n = 90; 61%) 2) Improve your ability to perform activities in and out of your home (n = 79; 53%) 3) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 74; 50%) 4) Discussing COPD and its progression (n = 71; 48%) 5) Improve your physical well-being (n = 70; 47%)	1) Relief of breathlessness (n = 23; 62%)	1) Relief of breathlessness (n = 22; 59%)	1) Discussing COPD and its progression (n = 23; 62%)	1) Relief of breathlessness (n = 24;65%)
	2) Improve your ability to perform activities in and out of your home (n = 20; 54%)	2) Improve your ability to perform activities in and out of your home (n = 22; 59%)	2) Relief of breathlessness (n = 21; 57%)	2) Improve your ability to perform activities in and out of your home (n = 22; 59%)
	3) Improve your physical well-being (n = 20; 54%)	3) Discussing COPD and its progression (n = 19; 51%)	3) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 18; 49%)	3) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 20; 54%)
	4) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 18; 49%)	4) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 18; 49%)	4) Increase your ability to exercise (n = 18; 49%)	4) Improve your physical well-being (n = 18; 49%)
	5) Discussing COPD and its progression (n = 18; 49%)	5) Increase your ability to exercise (n = 17; 46%)	5) Improve your physical well-being (n = 17; 46%)	5) Discuss new or alternative COPD medication(s) (e.g., opioids) (n = 18; 49%)
	5) Increase your ability to exercise (n = 18; 49%)		5) Discuss new or alternative COPD medication(s) (e.g., opioids) (n = 17; 46%)	6) Discuss treatment alternatives (n = 18; 49%)
	Group A, Low breathlessness burden + low exacerbation risk (n = 27)	Group B, High breathlessness burden + low exacerbation risk (n = 50)	Group C, Low breathlessness burden + high exacerbation risk (n = 14)	Group D, High breathlessness burden + high exacerbation risk (n = 40)
	1) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 14; 52%)	1) Relief of breathlessness (n = 36; 72%)	1) Improve your physical well-being (n = 9; 64%)	1) Relief of breathlessness (n = 27; 68%)
	2) Improve your ability to perform activities in and out of your home (n = 12; 44%)	2) Improve your ability to perform activities in and out of your home (n = 30; 60%)	2) Increase your ability to exercise (n = 9; 64%)	2) Discuss new or alternative COPD medication(s) (e.g., opioids) (n = 22; 55%)
	3) Discussing COPD and its progression (n = 12; 44%)	3) Discussing COPD and its progression (n = 27; 54%)	3) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 7; 50%)	3) Prevent lung flare-ups (e.g., lung infection or exacerbation) (n = 20; 50%)
	4) Improve your physical well-being (n = 12; 44%)	4) Increase your ability to exercise (n = 27; 54%)	4) Discuss new or alternative COPD medication(s) (e.g., opioids) (n = 7; 50%)	4) Improve your ability to perform activities in and out of your home (n = 19; 48%)
	5) Discuss treatment alternatives (n = 12; 44%)	5) Improve your physical well-being (n = 26; 52%)		5) Discuss treatment alternatives (n= 18; 45%)
	5) Avoid hospitalizations due to COPD (n = 12; 44%)

Note: Percentage of respondents calculated based on each subgroup. Indicates the percentage of people in each group who selected the healthcare topic. AO = airflow obstruction; COPD = chronic obstructive pulmonary disease.

Figure 7. Healthcare priorities by breathlessness burden and exacerbation risk group classification (n = 130).

Note: Research priorities are presented in the same order as the overall priorities in Figure 5, and not by the frequency of selection. The percentage value beside each priority represents the percentage of individuals in the group who selected the priority. The first and second most commonly selected research priorities in each group are outlined in red.

Table 5. Chi-squared (χ²) for healthcare priorities of each comparison group.

Healthcare Priorities	Airflow Obstruction (n = 148)		Breathlessness Burden and Exacerbation Risk (n = 130)
	χ^2 (3)	V^†	χ^2 (3)	V^†
Relief of breathlessness	.57	.06	10.81*	.29
Increase your ability to exercise	.30	.05	9.72*	.27
Improve your ability to perform activities in and out of your home	3.56	.16	2.42	.14
Increase your autonomy (less reliant on others)	3.90	.21	5.55	.21
Prevent lung flare-ups (e.g., lung infection or exacerbation)	.32	.05	.44	.06
Avoid hospitalizations due to COPD	1.57	.10	4.86	.19
Avoid hospitalizations due to other chronic conditions	3.61	.16	2.30	.13
Decrease your use of COPD medication	4.99	.18	6.09	.22
Discuss new or alternative COPD medication(s) (e.g., opioids)	.96	.08	3.19	.16
Discuss how to decrease side effects of COPD medication	2.80	.14	10.90*	.29
Learning how best to use your inhaler	4.30	.17	1.15	.09
Discuss treatment alternative	3.69	.16	2.21	.13
Discuss benefits and harms of current, proposed and/or alternative COPD therapies	4.96	.18	1.35	.10
Improve your psychological health and mental well-being	5.80	.20	2.56	.14
Improve your physical well-being	1.41	.10	3.61	.17
Discuss how to decrease your anxiety and/or depression	2.60	.13	3.30	.16
Discuss availability of rehabilitation services (e.g., case manager, exercise training program)	6.00	.20	.14	.03
Discuss additional resources (e.g., smoking cessation, physical activity, nutrition)	4.00	.16	4.83	.19
Discuss the management of health conditions other than COPD	8.80*	.24	12.11*	.31
Discussing COPD and its progression	8.09*	.23	1.88	.12
Discuss alternative/palliative interventions to manage COPD and improve quality of life	3.34	.15	2.62	.14
Discuss alternative therapies for the management of COPD symptoms	2.65	.13	1.83	.12
Discuss aspects of life expectancy	4.43	.17	1.97	.12
Discuss how to access/obtain information on COPD services available in the community and online	5.50	.19	2.48	.14

Notes: *p < 0.05; ^†V = Cramer’s V. Abbreviations: Chronic Obstructive Pulmonary Disease (COPD); Global Initiative for Obstructive Lung Disease (GOLD); pulmonary rehabilitation (PR).