Table S1.
Medical Information Burden, Difficulty with Healthcare Services, and Physical/Mental Exhaustion due to self-management scales from the Patient Experience with Treatment and Self-management
| Medical Information Burden |
| In the past 4 weeks, how easy/difficult has it been to… |
| – Learn about your health problem(s)? |
| – Learn what foods you should eat to stay healthy? |
| – Find information on the medications that you have to take? |
| – Understand changes to your treatment plan? |
| – Understand the reasons why you are taking some medicines? |
| – Find sources of medical information that you trust? |
| – Understand advice from different healthcare providers? |
| Responses: very easy, easy, neither easy nor difficulty, difficult, very difficult, not applicable |
| Difficulty with Healthcare Services |
| Thinking about your health care, how much do you agree/disagree with the following? |
| – I have problems with different healthcare providers not communicating with each other about my medical care |
| – I have to see too many different specialists for my health problem(s) or illness(es) |
| – I have problems filling out forms related to my health care |
| – I have problems getting appointments at times that are convenient for me |
| – I have problems getting appointments with a specialist |
| – I have to wait too long at my medical appointments |
| – I have to wait too long at the pharmacy for my medicine |
| Responses: strongly agree, agree, disagree, strongly disagree, not applicable |
| Physical/Mental Exhaustion due to self-management |
| In the past 4 weeks, how often did your self-care make you feel… |
| – Angry? |
| – Preoccupied? |
| – Depressed? |
| – Worn out? |
| – Frustrated? |
| Responses: never, rarely, sometimes, often, always |