Expectations and Experiences of a Group of Patients Enrolled in an Educational Program for Rheumatoid Arthritis at a Specialized Care Center in Colombia

Figures & data

Table 1 Sociodemographic Characteristics

Variable	n(%)
Age
30 to 39	6 (4.3)
40 to 49	14 (10.21)
50 to 59	45 (32.8)
60 to 69	52 (37.9)
70 to 79	18 (13.1)
80 to 89	2 (1.45)
Sex
Female	126 (92)
Male	11 (8)
Civil status
Single	35 (25.5)
Married	48 (35.03)
Widowed	11 (8.02)
Separated	31 (22.62)
Civil union	12 (8.75)
Educational level
Primary	31 (22.6)
Secondary	49 (35.7)
Vocational	25 (18.2)
Technical	10 (7.2)
University	22 (16.1)
None	0 (0)

Table 2 Scale of Expectations About the Program

Expectations n (%)	Nothing 0	1	2	6	7	8	9	Very Much 10
Logic of the intervention	0	0	0	1	3 (2.2)	7 (5.1)	12 (8.8)	105 (77.7)
Satisfaction with the intervention	0	0	0	0	1 (0.7)	7 (5.1)	18 (13.2)	101 (74.4)
Intervention recommendation	0	0	0	0	1 (0.7)	1 (0.7)	18 (13.2)	106 (78.5)
Usefulness of the intervention	0	0	0	0	2 (1.4)	1 (0.7)	13 (9.5)	109 (80.7)
Level of displeasure with the intervention	109 (80)	15 (11)	2 (1.4)	0	0 (0)	1 (0.7)	3 (2.2)	6 (4.4)

Box 1 Live Stories

Verbatims
”It was terrible. At first, Social Security treated me only with Acetaminophen and Ibuprofen. Years have passed, they sent me to the internist; but he has already started to prescribe me other medications” P1
“It was just like ‘take medicine and go home.’ So, I had gotten depressed and felt that it really didn’t matter to the doctors”. P2
“In my day, it was: trial-error-trial. They tried until it worked”. P4
“Why is an internist treating me and not a rheumatologist? At that time, they did not have many rheumatologists”. P5
“I realized that Treatment was very difficult for my illness since I live in Ubaté and there several people, including my mother, had the disease and presented difficulties”. P20

Box 2 Disease Implications

Verbatims
“I’ve gotten depressions because I am a person so young and already with that disease” P1
“I worked until last year in August. I really needed work” P5
“I am a surgical nurse. In 2018, they began to dismiss the charges since I could not enter some surgeries. My illness limits me a lot, especially in my profession; So, I had to go looking for a retirement because, with my illness, they would not accept me. P7
“My toes were totally twisted. I remain very depressed. A whole life getting up early and not knowing that from one moment to the next I would no longer get up to work” P9
“It was terrible the first year, I was a 100% athlete, and I limited myself. It was not easy”. P29
“It started as paralysis. I could not walk, my feet, my hands, my knees did not respond, the pain was very strong. It stressed me out too much. It causes a lot of sadness that you really already think, why live? If the truth is, I am already useless. You feel useless”. P31

Box 3 Attitudes Towards the Disease

Verbatims
“I was not taking my medications. I did not accept the disease” P7
“I continued working without consulting the doctor. When I arrived at night, my feet would become inflamed, and I would take two Acetaminophen, and the next day, they would deflate. So, I kept going because I am a very active woman” P9
“I was a little scared when I saw that they prescribed so much medicine, so many pills; because I started to feel some things” P11
“It was very strong at the beginning; I did not accept it because I documented myself on the internet, and it drove me crazy when I saw the results of the medications. They were all fatal” P26

Box 4 Patients’ Expectations

Verbatims
“Empower ourselves of our disease, since many people believe in myths, and the idea is to have knowledge that will serve one about the disease” P6
“Understand, and manage the situation and, above all, how to empower yourself from the disease”. P11
“Getting to the end of this program interests me because we are all here for that. But in itself, it is learning, taking from each partner the positive and the negative” P15
“Acquire all the knowledge that I can to benefit myself and that I have the ability to transmit the information to people. I want to do the full course-The two years, and I hope the opportunities continue to be given to me”. P20
“Be trained, be an expert patient. Better quality of life and help train other people who do not have this opportunity”. P23
“This course is going to teach me to be even stronger, to be more positive, to be able to be happier with myself and with my family”. P27
“Learn and deepen our knowledge, empowering ourselves with a better quality of life to be able to fight for our rights in a health system like the one we have” P28

Box 5 The Role of the Expert Patient as One Relevant Expectation

Verbatims
“Being able to teach is wonderful, and this way, one can transmit the knowledge acquired”. P4
“Being able to share this with people who are also in the same situation, what I am learning here is really the only thing that can help us”. P11
“Telling them, knowing the disease well, teaching them how to lead a dignified life with the disease, taking into account all that they are teaching us in this excellent program” P12
“I will help everyone that I see, giving them a hug and encouragement, because that for me is comforting, and that gives me life”. P13
“First, share the experiences of other people who have the same. Second, all the teachings, all the videos, all the comments from the professionals. Third, do your part to put everything into practice”. P22
“Documenting myself and training myself to guide people. Helping many people is born to me, and I like it”. P25

Box 6 Factors That Enhance or Improve the Experience of Living with RA

Verbatims
“I was alone, with a child and with heart problems. Then I said to myself: “I cannot die because then how is he going to be?” And maybe, these bad things that happen to you are like a help to get ahead” P1
“When I met my first rheumatologist, he was very encouraging. Even though I could not walk, I came out of it”, “I started to be a teacher, and I am motivated” P17
“As soon as I was diagnosed, I changed my attitude, I did not let myself be dominated by the disease because I saw how my mother had suffered with this disease, and I decided to change and be different. Having additional motivation helps a lot”. P20
“It is a positive attitude, a mental attitude. It seems to me that it is more mind than body. I think that one could dominate all that with the mind because one is distracted by a program or something” P26
“After the first year, my attitude was joy, positivism, laughter, collaboration with people and my family. If you act positively, that’s how your life will be” P28

Box 7 Experiences Around the Educational Program

Verbatims
“Here they have us do activities such as crafts” P3
“Here we see a person who knows. Then, one feels more secure with this information and can explain it to other people” P6
“I think that one would always like to be aware of the disease with which one is going to live the rest of his life” P10
“It takes a lot of strength and a lot of courage to manage the disease, and that in terms of knowledge, one can contribute whatever it is. That has motivated me a lot to continue and motivate other people” P17
“Commitment, will, time, attitude, desire to learn, total awareness, judgment, responsibility, as commitment are factors of adherence to the program”. P32