Development of a Pulmonary Rehabilitation Patient Decision Aid for Patients with Chronic Obstructive Pulmonary Disease: Mixed Methods Study

Figures & data

Table 1 Results of Qualitative Interview

Themes	Sub-Themes	Explanation	Quotes
Key points of age-friendly design	1. Diversity in the form of tools	Influenced by factors such as visual, auditory and lack of smart devices when accessing the paper-based version, patients expressed needs for different versions of decision aids.	“I’ve had an operation on my eyes. I can’t read these materials. Do you have a video of this? I can listen to it”. (A COPD male patient 75 years old.) “I don’t have a smartphone. A paper one are just fine. I look through it when I’m not doing anything” (A COPD male patient 70 years old.)
	2. Ageing of visual elements	Visual factors, such as fonts, icons, pictures and colours, often influence older patients’ experience of using the tools. Most participants preferred large fonts, large icons, high-contrast text, intuitive pictures and warm colour tones.	“I think that if this material is for older people, the colours should be slightly warmer and the contrast between the colour of the word and the background colour should be slightly stronger. That way older people can see it clearly”. (A female family caregivers 45 years old.) “I think the picture needs to be slightly more visual. For example, for financial burdens, you could just put a picture of the money at a glance” (A male family caregivers 51 years old.) “The letters must be bigger or we won’t be able to read them”. (A COPD male patient 72 years old.) “The pictures should be clearer. The pictures printed on the material don’t seem very clear”. (A COPD male patient 72 years old.)
	3. Concise and colloquial language	Most participants reported that older patients have reduced learning and comprehension skills. The age-friendly tool needs to focus on the readability of the content. Moreover, the language should be easy to understand and jargon should be avoided.	“For older people, the question of whether or not they can read and understand must be addressed first. For example, some of the medical jargon definitely needs to be explained”. (A male HCP 47 years old.) “The content definitely can’t be too professional. I can’t understand the content if it’s too professional, let alone older people”. (A male family caregivers 48 years old).
	4. Convenience of operation	Participants suggested that mobile internet applications should be designed with age-appropriate and accessible adaptations. The design of smart devices should have a simple interface and be easy to operate.	“It is more convenient to put it on your phone, but you have to consider whether older people are able to use it. Apps like some of the complex ones are definitely not suitable for older people”. (A male HCP 53 years old.) “It’s handy to have it on the phone so that we can look at it whenever we want. It’s better to design it in a simple way… at a glance… without tapping around”. (A COPD male patient 68 years old.)
Content of the tool	1. Richness of content	Some older patients emphasised that the content of the paper-based decision aids should detail information related to disease etiology, treatment, prevention, pulmonary rehabilitation content and rehabilitation outcomes to help them make better judgements and decisions. Some patients also requested to receive timely and comprehensive health education on authoritative health information.	“I think this material could be a little more detailed, such as the cost of pulmonary rehabilitation, how to do it, where to do it, how long to do it, and what tools to use to do it…” (A male HCP 48 years old.) “People are in different conditions. What to do for different people has to be made clear”. (A female family caregivers 52 years old.) “We definitely want to know more about the disease, such as information on the prevention and treatment of the disease, as well as how to recover. The above information is very often not available and we are left at a loss”. (A COPD female patient 62 years old.)
	2. Length of the tool and content	Participants reported that the material was too long and that too much content or word count often made patients lose interest in reading. The length of sentences in the material should be appropriate and the overall number of pages of material should not be excessive. HCPs suggested that the content of the material be re-categorised into different modules to help patients choose freely according to their personal preferences.	“There’s too much content for older people to read”. “I found it a bit hard to read too many words”. (A female HCP 38 years old.) “I think it’s best to separate the different types of content. It definitely won’t work for older people to see so much at once. It could be divided into modules for patients to see selectively for themselves”. (A male HCP 45 years old.)
Presentation requirements of contents and study evidence of the tool	1. Presentation of content	Participants suggested that the content of the material should be presented in a combination of illustrations and text to make it more interesting, with the key points highlighted in different colours or bolded, to help patients use and understand it better.	“The key points could be labelled more visually. For example, some of them could be more visual with pictures, like shortness of breath, coughing”. (A male HCP 40 years old.)
	2. Terminology strategy	HCPs suggested that the content should be presented from the patient’s point of view, changing the language strategy while being lively, visual and easy to understand.	“Changing ‘improved breathing’ to ‘allowing you to breathe better’ will make patients more comfortable ‘Breathe better’ is suggested to be changed to ‘breathe more scientifically’. ‘Relieving family care’ should be changed to ‘relieving family burden’. ‘Shortness of breath’ (eg ‘shortness of breath when walking’, ‘shortness of breath when climbing stairs’…) is not sufficiently visual. There should be a comparison… read ‘shortness of breath worsens when climbing stairs’, ‘less walking than before’, ‘shortness of breath worsens after activity”(A male HCP 40 years old.) “The words could be more plain, words like the ‘the involvement in daily activities’ would be too professional” (A female HCP 27 years old.)
	3. Values of study evidence correspond to benign outcomes	Some patients reported that when presented with research evidence, the first reaction was generally to assume that the larger the value the better the outcome. They would like to see the results presented with benign outcome indicators to help patients understand the content of the tool better.	“At first glance I thought the larger the value the better the outcome. The values of mortality rate and adverse event occurrence should be interpreted in reverse, shouldn’t it? I just missed it” (A COPD male patient 70 years old.)
Other views and suggestions	1. Communication barriers	Participants all reported difficulties in communication between doctors and older patients. There were problems with older patients who denied their ability to communicate, had difficulty expressing their ideas, and When doctors communicate, they do not take initiative and listen patiently.	“I don’t have any ideas… just listen to the doctor”. “Doctors were quite busy. They didn’t have time to listen to me slowly. I just followed what the doctor told me to do”. (A COPD female patient 70 years old.) “Older people are mostly passive when it comes to communication. Many of them feel they can’t figure it out and they can’t understand if you talk to him too much” (A male HCP 45 years old.)
	2. Regulatory Assurance	HCPs recommended that online versions of decision aids should be equipped with a sound regulatory system. The security of medical information and data should be guaranteed, as well as the accuracy and timeliness of the information received by patients.	I think there is a need for a reasonable monitoring and management system for the app version (of decision aids), like patient’s privacy…needs to protect”. (A male HCP 45 years old.) “This kind of platform might have to be maintained by someone regularly and the content on it would have to be updated regularlyx”. (A male HCP 45 years old.)

Table 2 Acceptability of PtDAs Among Study Participants

Items	Positive Reply (n)
	Patients	HCPs^a	Family Caregivers	Total/Percentage
PtDAs are clear, easy to understand and easy to watch.	22	17	6	45/100%
The content of the tool is clear and easy to understand.	19	16	5	40/88.9%
Appropriate length of material	20	16	5	40/91.1%
Appropriate length of sentences	19	16	5	40/88.9%
The icons and explanations in the tool are very helpful.	18	15	5	38/84.4%
PtDAs provide sufficient information on COPD and pulmonary rehabilitation.	20	15	5	40/88.9%
PtDAs provide sufficient information on the pros and cons of pulmonary rehabilitation.	20	14	4	38/84.4%
PtDAs are simple to use and easy to navigate.	18	13	5	36/80%
The font size and background colour of PtDAs are appropriate.	19	16	5	40/88.9%
PtDAs help with communication with doctors	18	16	6	40/88.9%
PtDAs are suitable for older patients facing the same decision.	20	16	5	41/91.1%

Note: ^aHCPs, healthcare professionals.

Figure 1 The SUS scale scores.

Table 3 Results of Language Expression Test for Patients

Type of Statements	Pre-Training/Post-Training Mean (SD)
Observation statements	0(0)/0.02(0.04)
Comment statements	0(0)/0.03(0.06)
Imperative statements	0(0)/0(0)
Statements expressing needs	0(0)/0.03(0.04)
Statements expressing feeling	0.02(0.05)/0.16(0.04)

Table 4 Results of Language Expression Test for HCPs

Type of Statements	Pre-Training/Post-Training Mean (SD)
Observation statements	0(0)/0.41(0.06)
Comment statements	0.16(0.16)/0(0.02)
Imperative statements	0.21(0.20)/0(0)
Statements expressing needs	0(0)/0.2(0.05)
Statements expressing feeling	0(0)/0.15(0.06)

Data Sharing Statement

The data that support the findings of this study are available from http://apps.who.int/trialsearch/default.aspx.