Patient-perceived treatment burden of chronic obstructive pulmonary disease

Figures & data

Figure 1 Framework for treatment burden in COPD.

Note: Copyright © 2015. Dove Medical Press. Adapted from Eton DT, Ramalho de Oliveira D, Egginton JS, et al. Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Related Outcome Measures. 2015:6:117–126.²⁴

Table 1 Participant demographics and medical characteristics

Participant characteristics	n=26	%
Age
Mean 66.7 years
Range 51–82 years
Sex
Male	11	42.3
Female	15	57.7
Occupation
Retired	19	73.1
Domestic duties	3	11.6
Disability pensioner	2	7.7
Manager	1	3.8
Sales assistant	1	3.8
Cultural background
Aboriginal and Torres Strait Islander	1	3.8
Culturally and linguistically diverse	1	3.8
Caucasian	24	92.3
Highest level of education attained
Tertiary studies	4	15.4
Year 11–12	2	7.7
Year 9–10	13	50
Year 7–8	7	27
Time since COPD diagnosis
>15 years	7	27
10–15 years	3	11.6
6–10 years	8	30.8
1–5 years	8	30.8
Number of self-reported comorbidities
>2	10	38.5
2	9	34.6
1	5	19.2
0	2	7.7
Self-reported comorbidities
Arthritis/joint pain	10	38.5
Asthma	7	27
Hypertension	5	19.2
Obstructive sleep apnea	5	19.2
Diabetes mellitus	5	19.2
Osteoporosis	4	15.4
Cardiovascular disease	3	11.6
Hypercholesterolemia	2	7.7
Other	17	65.4
Self-reported medications taken for COPD
Mean 3.5 (range 1–5)
Short-acting β-agonists (SABAs)	14	53.8
Long-acting muscarinic antagonists (LAMAs)	13	50.0
Combination inhaled glucocorticoids and long-acting β-agonists (LABAs)	11	42.3
LABAs/LAMAs	3	11.6
Inhaled or oral glucocorticoids	5	19.2

Table 2 COPD treatment-burden themes based on framework analysis of interview data

Participant*	Health behaviors	Medical appointments and health care- provider issues	Medications	Learning about conditions and care	Medical devices/equipment	Monitoring health status	Treatments not prescribed by health professionals	Financial challenges	Interpersonal challenges	Barriers to self-care	Emotional and social impacts of treatment burden
Barry	✓+	✓+	✓+	✓+	✓+++	✓	✓++	✓	✓++	✓++	✓+++
Belinda	✓+++	✓++	✓++	✓++	✓+	✓	✓	✓++	✓+		✓+
Carrie	✓++	✓++	✓+++	✓++		✓	✓	✓+	✓++		✓+
Cassandra	✓++	✓+	✓+	✓+		✓	✓	✓+++	✓+		✓+
Charlene	✓+++	✓	✓	✓		✓	✓+	✓	✓+		✓++
Cheryl	✓+	✓++	✓++	✓+++	✓+++	✓	✓+++	✓+++	✓+		✓++
Darlene	✓+++	✓++	✓++	✓		✓	✓+	✓	✓++	✓+	✓++
David	✓+	✓	✓+	✓		✓	✓+	✓	✓		✓++
Gary	✓++	✓+	✓+++	✓+	✓++	✓	✓	✓+	✓++	✓	✓++
Geoff	✓+++	✓+++	✓+++	✓+	✓+	✓++	✓+	✓++	✓+++	✓+	✓+
Geraldine	✓+++	✓+++	✓+++	✓+++		✓++	✓++	✓++	✓++	✓+++	✓+++
Gus	✓++	✓+	✓++	✓		✓	✓+	✓+	✓++	✓	✓++
Gwyneth	✓++	✓++	✓+	✓++		✓	✓++	✓+	✓+		✓++
Harvey	✓	✓	✓+	✓	✓	✓	✓+	✓+	✓	✓+	✓
Henry	✓++	✓	✓++	✓	✓+	✓+	✓+	✓	✓	✓+	✓+
Hugh	✓+	✓	✓	✓+		✓	✓	✓	✓+++		✓+
Jenny	✓+++	✓+++	✓	✓		✓+++	✓+	✓	✓++	✓++	✓+++
Karen	✓++	✓+++	✓	✓+++		✓	✓+	✓+	✓+++		✓++
Katherine	✓++	✓+	✓+	✓++	✓	✓	✓	✓	✓		✓+
Laura	✓+	✓+++	✓+	✓+	✓+	✓	✓	✓	✓++		✓
Margaret	✓++	✓++	✓+	✓+		✓+	✓	✓	✓++	✓+++	✓+
Mark	✓++	✓+	✓+	✓++		✓+	✓++	✓	✓+	✓+++	✓+++
Megan	✓+++	✓++	✓++	✓	✓++	✓	✓+++	✓	✓++	✓+	✓+++
Peter	✓	✓	✓	✓		✓	✓	✓	✓		✓
Stacy	✓++	✓+	✓+	✓+		✓	✓+	✓++	✓+	✓+	✓++
Tony	✓+++	✓++	✓+	✓++		✓	✓+	✓+++	✓+++	✓	✓+

Notes: ✓, Topic discussed: no burden – treatment work requires time commitment, but is not perceived as a burden, may even have positive effects (eg, exercising improving well-being); +, slight burden (treatment work perceived as somewhat burdensome, but does not trigger negative emotional response nor significantly interfere with patient’s everyday activities); ++, moderate burden (treatment work is burdensome, triggers feelings of frustration, interferes with some of patient’s everyday activities); +++, significant burden (treatment work is very burdensome, triggers feelings of depression, patient’s everyday activities severely limited because of treatment work).

* Names provided are pseudonyms.

Table S1 Interview guide

Question	Probes and follow-up questions
Item 1: What types of health problems are you dealing with right now?	• Besides the COPD, have you been diagnosed with any conditions? (If yes) Do these conditions affect you? How?
Item 2: What kinds of things do you do to care for your COPD?	• Do you measure your oxygen levels at home? (If yes) What do the results mean to you?
	• Do you have other ways of monitoring your health in general, including other conditions?
	• Have you had any difficulties learning about your COPD? (If yes) What sort of problems?
	• Did you find ways to overcome these problems? (If yes) What were they?
	• Tell me about any times where you’ve felt confused about the information given to you?
	• I’m interested, tell me what you know about your COPD/emphysema?
	• Where do you get your information from?
Item 3: What sort of things make it difficult to care for your COPD?
Item 4: Do you ever cut back on doing things for your COPD?	• (If yes) What sort of things? Please tell me about that in more detail.
Item 5: What sort of things make it easier to care for your COPD?	• In caring for your health, do you get support from other people? (If yes) Who? What kinds of things do they do to help you?
	• Has your health care ever created tension between you and other people? In what way?
	• Please tell me about the relationships that you have with your health care providers.
	• Is communication between you and the providers particularly good or bad? Can you give an example to illustrate this?
Item 6: Thinking of all of the things you have to do to care for your COPD: how do they affect you?	• Does looking after your COPD affect your work (only if applicable), social, or family life? Looking after your COPD might include taking treatments (eg, reducing smoking, taking exercise). (If yes) Can you give me an example?
	• Has managing your COPD affected you at all financially? (If yes) In what way?
	• For some people, caring for their health condition can be emotionally challenging. By that, I mean some people say they get anxious, feel down, or feel upset. Have you had any experiences like that? (If yes) Can you describe the experience?
	• What kinds of things help you feel better when you’re feeling this way?
	• Have you been asked to make lifestyle changes, such as to your diet, for your COPD? (If yes) How do you feel about that?
	• Were you able to make any of those changes, and how difficult was it?
Item 7: How do you feel about exercise?	• Do you think exercise is good or bad for COPD?
	• What makes you say that?
	• What are your thoughts on breathlessness and exercise?

EtonDTRidgewayJLEggintonJSFinalizing a measurement framework for the burden of treatment in complex patients with chronic conditionsPatient Relat Outcome Meas2015611712625848328

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