The development and pilot testing of the Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD)

Figures & data

Figure 1 Process of manual development and testing.

Table 1 Demographics of participants attending focus groups

	Group 1	Group 2	Group 3	Group 4	Group 5
Participants (n)	4	3	6	5	6
Sex (m:f)	2:2	3:0	3:3	4:1	3:3
Mean age (years)	72.75	71.33	67.83	73.80	70.00
Mean FEV1 (L)	0.66	1.65	1.12	1.39	1.14
Mean FVC	1.85	2.45	2.61	3.12	2.41
Mean FEV1/FVC	0.37	0.67	0.42	0.48	0.45
Mean BMI	24.15	28.09	26.78	27.11	28.77
MRC
2		1
3	2	1	3	2	3
4	1	1	2	3	2
5	1		1		1

Abbreviations: BMI, body mass index; FEV₁, forced expiratory volume in 1 second; FVC, forced vital capacity; MRC, Medical Research Council Dyspnoea Scale.

Table 2 Participant comments from focus groups

Aspect of self-management	Participant comments
What are the patients’ educational needs? What content would patients like to see in the manual?	COPD/disease process/managing exacerbations
	“I think understanding the disease is important and … knowing what the long-term effects are likely to be of that condition.” (FG5)
	“I like to know what’s going on here and what’s going to happen in the next 10 years.” (FG5)
	“It’s knowing the difference between a chest infection or [if] you haven’t got one and you’ve got this bad breathing, how long do you let that go on for?” (FG4)
	“You don’t know quite what these flare-ups are.” (FG4)
	Breathing exercises
	“You panic like mad, you can’t breathe … learning to cope with situations like that.” (FG4)
	Medicines
	“There’s never any mention about which order to use [the inhalers] in or when to use them.” (FG5)
	Exercise
	“I think, yes, you need that something to prompt you [to exercise] … just that little something else … to remind me, so [a] walking diary [would help].” (FG5)
	“If you had the walking diary people who did it would fill it in themselves and then once a month or once a quarter [have] you check it.” (FG5)
	“On your own, you’re never sure whether your under-doing it or overdoing it.” (FG4)
	Nutrition
	“[N]obody’s ever actually from a medical point of view said to me you should [eat] this or you should [eat] that.” (FG5)
	Oxygen therapy
	“I think people need to know about oxygen, the types of oxygens available. I think would be very useful for people who need to know that.” (FG5)
	Relaxation
	“[Relaxation – ] I think that’s an important skill to have.” (FG5)
	Family and carers
	“[F]amilies, relatives and friends … they should be aware that the worst thing they can do is panic …” (FG3)
Comments on the SPACE for COPD manual	“You can actually look back on it, so you can actually remind yourself of something.” (FG1)
	“It’s there for you to dip in and out of when things aren’t right and then other times you might want to use it to help with exercise and get fitter.” (FG4)
	“Reading [the case study] and seeing how she’s getting on would help me actually see how I’m getting on, see if I’m doing the same sort of thing.” (FG1)
	“I’m a great believer in diagrams and pictures, pictures particularly. People look at pictures maybe read over text.” (FG5)
Who should deliver self-management?	“I think professionals who know the people, know what the people are capable of, [should] see them again, then you’ll be able to see if they’ve got any better.” (FG1)
	“[Physiotherapists] know how far we can go and you stop there, or if we’re improving then you’ll take it a step further, but other people wouldn’t do that unless they’ve had your training.” (FG1)
	“I haven’t got a lot of faith in GPs.” (FG4)
	“The GP’s got to learn about every single illness and this is a specialist site. It doesn’t matter how friendly you are with him, you still think is he right or not?” (FG5)
When is the right time for self-management to be introduced?	“If they’d given me [the information] say 10–15 years ago, I would’ve sat down and read it and I’d known what I’d got to do and what was going to happen to me.” (FG4)
	“I feel it would help other people who, as you’ve just said, recently diagnosed with this problem, it would help.” (FG2)
	“It doesn’t matter what age you are, you’re going to say I want to do something about this.” (FG4)
	“The [person] that it would probably lose on it would be somebody that’s just been diagnosed with COPD – you give them this [self-management program] and they wouldn’t have a clue.” (FG5)
How should self-management be delivered?	“I think you’ve got to see somebody, because wouldn’t it be best for the health care professionals to see the people as well.” (FG3)
	“Face to face for starters.” (FG1)
	“I think maybe in a self-management program, perhaps phone calls to people would be a help to try and motivate people, encourage them more.” (FG1)
	“[Follow-up] couple of times a year or something, just to keep in touch.” (FG1)
	“I’ve always felt that face to face is the best, but sometimes we can’t always have the best, we have to take second.” (FG2)
	“I feel it’s nice if they contact you, because at the end of the day they’re taking your health and they’re thinking about your health, and it’s nice to know that there’s – apart from your own surgery – that there’s someone else thinking about you and just checking that everything’s all right.” (FG3)

Abbreviations: COPD, chronic obstructive pulmonary disease; FG, focus group; GP, general practitioner; SPACE for COPD, Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease.

Table 3 Outline of the content of the Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD)

SPACE for COPD content	Self-management activity/skill
Stage 1
What’s happened to your lungs?	Medical management
Exercise: how to get fitter	Problem solving
	Forming partnership
Setting your goals	Taking action
Managing your stress	Emotional management
	Problem solving
Your emotions	Emotional management
Controlling your breathing	Medical management
Your medication	Medical management
	Problem solving
Stage 2
How to stay fit	Decision making
Avoiding and managing days when you feel unwell	Problem solving
	Medical management
Saving your energy	Problem solving
	Behavioral management
The right foods when you feel unwell	Medical management
Clearing your chest	Medical management
Stage 3
How to get stronger	Medical/behavioral management
Managing your stress	Emotional management
	Taking action
	Problem solving
	Role management
Healthy eating	Medical management
	Decision making
	Problem solving
Traveling and your lung disease	Decision making
	Problem solving
Stage 4
Staying fit and your hobbies	Medical/behavioral management
	Role management
	Decision making
	Resource utilization
	Taking action
Your relationships	Role management
	Emotional management
	Problem solving
Dealing with setbacks	Taking action
	Problem solving
Sex and your lungs	Emotional management
	Role management
	Problem solving
Breathe easy	Role management
	Resource utilization
Appendix
Frequently asked questions	Problem solving
Setting your walking speed	Problem solving
Help for carers	Role management
	Emotional management
Advice about oxygen	Medical management
Decision making
Information about your medication	Medical management
Action plan	Resource utilization
	Forming partnership
	Decision making
Case studies	Role management

Table 4 Baseline demographics of participants in the pilot intervention study

	SPACE for COPD (n = 37)
Sex (m:f)	22:15
Mean age (years)	68.05
Mean FEV1 (L)	1.47
Mean FVC (L)	2.73
Mean FEV1/FVC Ratio	0.54
Mean BMI (kg/m^2)	29.92
Married (n)	24
Employment (n [%])
Retired	31 (83)
Working	5 (14)
Long-term sick leave	1 (3)
Smoking (n [%])
Current smoker	3 (8)
Previously	31 (84)
Nonsmoker	3 (8)
LTOT (n [%])	2 (5)
MRC (n [%])
2	16 (43)
3	12 (32)
4	7 (19)
5	2 (5)
Comorbidities (n [%])
Diabetes	6 (16)
Ischemic heart disease	1 (3)
Hypertension	16 (43)
Heart failure	1 (3)
Arthritis	12 (32)
Depression	2 (5)

Abbreviations: BMI, body mass index; FEV₁, forced expiratory volume in 1 second; FVC, forced vital capacity; LTOT, long-term oxygen therapy; MRC, Medical Research Council Dyspnoea Scale; SPACE for COPD, Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease.

Table 5 Baseline and mean change with 95% confidence intervals (CIs) for the Self-Report Chronic Respiratory Questionnaire (CRQ-SR), Incremental Shuttle Walk Test (ISWT), Endurance Shuttle Walking Test (ESWT), and the anxiety (A) and depression (D) domains of the Hospital Anxiety and Depression Scale (HADS)

Measure	Baseline	Mean change (95% CI)	P
CRQ-SR*
Dyspnea	3.15	0.67 (0.23 to 1.11)	0.005
Fatigue	4.04	0.14 (−0.61 to 0.90)	0.701
Emotion	5.01	0.32 (−0.24 to 0.87)	0.244
Mastery	5.54	0.21 (−0.36 to 0.78)	0.444
ISWT (meters)	316.00	29.00 (−3.53 to 61.0)	0.780
ESWT (seconds)	240.70	302.25 (161.47 to 443.03)	<0.001
HADS-A	7.31	−1.73 (−3.26 to −0.21)	0.280
HADS-D	4.79	−0.21 (−1.39 to 0.97)	0.711

Note:

* A change of 0.5 denotes a meaningful clinically important difference.