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LITHUANIAN UNIVERSITY OF HEALTH SCIENCES
Department of Rheumatology
Chen Esti Poni
The level of patient’s education about the biological treatment in the
Rheumatology department
Master's Thesis
Thesis Supervisor
Doctor Egidijus Eviltis MD, PhD
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Table of Contents
1. Abstract………....4
2. Acknowledgements………....…..6
3. Conflicts of Interest ………..………..…….7
4. Clearance Issued by the Ethics Committee………....…..8
5. Abbreviations……….…...9
6. Terms………..10
7. Introduction………...11
8. Aim and Objectives………....12
9. Literature Review………...13
9.1. Biological therapy definition………...…...13
9.2. How does biological therapy works………13
9.3. Biological therapy development………..…14
9.4. Types of biological therapy……….14
9.5. Patient’s education about the biology therapy……….15
Information = expectation………...16
Knowledge = adherence………..16
9.6 Patients education at Kaunas hospital………...17
10. Research Methodology and Methods……….18
10.1. Method……….….18
10.2. Patient selections and amount………...18
10.3. Inclusion Criteria………..18
10.4. Exclusion Criteria……….19
10.5. Statistical analysis……….19
11. Results and Discussion………...…20
11.1. Patient parameters (gender, age and education)………...…20
11.2. Explanation given by doctor……….22
11.3. Doctor – patient meeting………...……23
11.4. Previous knowledge and source………....32
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11.6. Patient’s satisfaction and level of security regarding the biological treatment in our
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1. Abstract
Author name: Chen Esti Poni
Research name: The level of patient’s education about the biological treatment in the Rheumatology
department.
Research Aim: To investigate the level of patient’s education about the biological therapy, they are
receiving at the Rheumatology department.
Objectives: To determine if patients are well educated by the department concerning the therapy by:
- To develop a questioners for evaluation of patients knowledge about biological therapy. - To analyze questioners results and evaluate patients knowledge about this specific therapy.
- To summarize and give recommendation for improvement of patients education for the upcoming treatment.
Methodology: A goal specific questioner in the Lithuanian language was created, for the purpose of better
understanding of the education level of the patients that are getting the biological treatment. 140 patients from the department were given the questioner using specific inclusion and exclusion criteria. 84 patients fulfilled the questioners properly as needed and rest of the questioners had to be excluded.
Results: Linear relation between age and the level of understanding of the patients has been found significantly (r=0.22, p=0.04). Dual explanation (using verbal and written methods) was found significantly (p<0.01, M=4.53, SD=0.74) better than using only one. Correlation between getting a drug literature prior the biological therapy and knowing in a present of which symptoms patients should go to the emergency room was proved as well as significant (η2(1)=7.41, p<0.01), And the level of understanding of doctor explanation and the level of happiness regarding the explanation, found to be significant (F(2,81)=8.55,p<0.01) to predict the sense of security that patients are having to go through the biological therapy in the department.
Conclusions: The need for the biological therapy to be well explained and understood by the patients was
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2. Acknowledgments
To my dear boyfriend, Dor
You helped and supported me through this whole crazy journey. Without you, I would have never made it.
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3. Conflicts of interest
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4. Clearance issued by the Ethics Committee
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5. Abbreviations
ADR’s – adverse effect
Anti-TNF – Anti tumor necrotic factors CD - cluster of differentiation
IL - Interleukin
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6. Terms
Fusion proteins (chimeric proteins) - proteins created through the joining of two or more genes that originally coded for separate proteins
Hybridoma – Method producing large number of identical antibodies
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7. Introduction
Rheumatoid diseases are very common among the population and it has spread among variety of the different age groups. Also the treatment is mostly palliative and not fully treats the disease. Patients, who are not responding to the regular regimen of drugs, might be responding to biological therapy.
Since biologic treatment is less familiar for most of the patients, and may have serious adverse reactions it is necessary and important to explain to the patients about the procedure and especially the ADR’s, so patients would be educated about the treatment and its possible outcomes.
A proper explanation and patient understanding is needed for the biological treatment that is given in the department so the patient would be more ready and confident during the procedure.
Since the patient’s gender, age and academical education in the research’s participants might be very wide, it can create a variety of different understanding levels about the biological treatment which will be evaluated during this research, and once its recognizedusing a target questioner that will be created, which are the specific groups of population who have a low level of education regarding the therapy, an option of using different methods of explanation might offer.
In the research the mostly used drugs in the biological treatment are: Tocilizumab (IL-6 blocker)
Etanercept (Anti TNF agent)
Adalimumab (Anti TNF agent)
Infliximab (Anti TNF agent)
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8. Aim and objectives
Aim: To investigate the education level of the patients who are going through the biological therapy in the
Rheumatology department
Objective:
1. To develop a questioner for evaluation of patients knowledge and understanding of the biological therapy, using their demographic factors (age, gender, academic education), direct or indirect and “likeret” (1-5 scale) questions.
2. To review and analyze questioners results separately and in combination between the different questions for their statistical value in the understanding level and patient education about the therapy: - To reveal the influence of the patients demographic factors – age, gender, academic education over the level of understanding.
- To estimate the best explanation methods to the patients.
- To evaluate if doctor-patient meeting has sufficient time for discussion.
- To assess whether handing drug literature to the patients causes them to profoundly understand the drugs ADR’s.
- To determine the main sources in which patient gets through the majority of the information. 3. To conclude if patients are well educated by the department concerning the therapy
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9. Literature review
9.1 Biological therapy definition (by dictionary)
“Biological therapy -
A type of treatment that uses substances made from living organisms to treat disease. These substances may occur naturally in the body or may be made in the laboratory”
(medterms-medical-dictionary/article.htm)
9.2 How does biological therapy works?
To explain the biological therapy it is first needed to discuss the meaning of antibodies, which also called Immunoglobulins, and are proteins which composes of 2 heavy and 2 light chains. They are separated functionally into the 1) variable domains that are binding the antigens that are find in the body, and 2) constant domains that specify the effector function (1) those antibodies are essential for the normal health protection of the body against any hazardous or foreign substance that may harm the body.
Picture was taken from https://www.britannica.com/
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the specific diseases pathogenesis. As a role, Targeting specific molecular pathway is the answer to affect the diseases activity.
The Systemic rheumatic diseases are characterized by deregulated autoimmunity which leads to chronic inflammation in specific targeted organs and systems. The initial or triggered event is not known, and it most likely resulted from an interaction of genetic and environmental factors. (3)
9.3 Biological therapy development
Over the last decade there was a progress in the development of targeted biologic therapies. The technology of Monoclonal antibody first discovered at 1975 (4) when Köhler and Milstein developed the method for isolating monoclonal antibodies from hybridoma cells (5), and this rapidly became one of the management of rheumatologic disorders. Initially, mAbs were used as vehicles for transporting cytotoxic medications to the designated tissues; later, they were used to directly target molecules and cells of interest. (4)
9.4 Types of biological therapy:
15 Targets of biologic therapies: Mab. (A) Biologic agent targeting membrane-bound molecules. Examples: anti-TNF (infliximab, adalimumab), anti-IL-6 receptor (tocilizumab), IL-1 receptor antagonist (anakinra). (B) Biologic agent targeting soluble molecules. Examples: anti-TNF (infliximab, adalimumab). (4)
9.5 Patient’s education about the biology therapy:
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Information = expectation:
According to the research that has been done in the united states, around third of the patients reported “at least one unmet expectation after a clinic visit, with the most common reasons being unfulfilled expectations for information (47%)” (8).
In the research it was also reported that in the same group of people that did not get enough information the number of reported poor functional level and psychological status was increased. The pain score of those patients during the treatment was increased as well (7)(8) .
In conclusion, the most leading cause of patient disappointment was the lack of information that was supposed to be given by the physician, and the luck of knowledge and education of those patients had led them to a lower status of psychological and physical outcomes, Compared to the patients who had sufficient amount of information and better understanding of the treatment. Those patients who had better understanding levels, also experienced a greater appreciation for the risks and benefits of the biological treatment, and were more likely to accept the risks to achieve better outcome of their disease (9).
Knowledge = adherence:
Since rheumatic conditions requires treatment by a multidisciplinary approaches, fixed gaps in between each treatment to the next one, and following meeting with the physician that are highly recommended and necessary for the treatment, patients education becomes an integral part of the successful management of those diseases(10). Non-adherence to treatment tends to increase with long-term medication and in chronic diseases, which is especially important concerning the treatment with the biological agents because the optimal efficacy and effect of those agents only occurs if patients are compliant to their medication regime (11).
More than only keeping the patients adherent to their medication for the purpose of individual’s treatment improvement and effectiveness, it is also has been shown that adherent can reduce the healthcare costs (9).
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the treatment includes poor provider-patient communication, inadequate knowledge about a drug and its use, not being convinced of the need for treatment, fear of adverse effects of the drugs (13). Another causes for patients drug non adherence can be low socioeconomic state, lack of drug efficacy, slow response of the disease for the biological therapy and adverse effects caused by it (9). Age was also find to have influence on the level of patients understanding (14). In contrast, high level of education regarding the therapy and good communication between physician and patient increases patient adherence to treatment (15).
Due to all of those reasons, patient’s education is the key to improve understanding and treatment adherence.
9.6 Patients education at LSMU hospital Kauno klinkos clinic of Rheumatology:
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10. Research Methodology and methods
10.1. Method
A goal specific questioner in the Lithuanian language was created by me, for the purpose of better understanding the education level of the patients that are getting the biology therapy.
10.2 Patient selections and amount
During the period of September 2019 to February 2020, 140 patients from the Rheumatology department in Kaunas hospital who met the criteria were given the questioners. Each patient was evaluated for inclusion and exclusion criteria before getting the option to fill it in, and only after meeting all the requirements, the patient was given a printed version of the questioner and clear explanation from the nurses (who were instructed in advance) how to fill it in correctly.
After collecting back 140 filled in questioners for the purpose of statistical analysis, only 84 questioners were valid for use, and 56 questioners were rejected by me due to one of the following reasons:
1. Patient did not finish to fill in the questioner properly
2. Patient filled in more than one answer in a question that supposed to be answered by only one best option.
10.3 Inclusion criteria:
1. Patient is being treated and followed by the Rheumatology department of LSMU hospital Kauno Klinikos.
2. The patient has a confirmed rheumatology disease, and is treated using biological treatment.
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10.4 Exclusion criteria:
1. Patient is not being treated and followed by the Rheumatology department of LSMU hospital Kauno Klinikos.
2. Patient is not getting a biological treatment
3. The patient has no decision making capacity due to a mental illness or due to other medical conditions
10.5 statistical analysis:
20 0 10 20 30 age 9.5% 28.6% 25% 26.2% 10.7% <18 18-25 26-45 46-55 56-65 >65 36.9% 63.1% Male Female
11. Results and Discussion
11.1 patient parameters (gender, age and education)
Eighty four (84) patients that fulfilled the inclusion criteria and filled properly the questioner were enrolled in the study. The study consisted of 53 females and 31 males. See diagram 1.
Diagram 1: Patients gender distribution
The age distribution of the patients has been checked, ranging from less than 18 years, up to 65 and above. The purpose of this evaluation was to find out the further assessment in relation between age and other variables, for example - to answer the question if the age has influence over the level of understanding of the patient and also to check the time that will be required to explain by the doctor the biological treatment for older patients in comparison to younger ones. For the same reasons, the level of patient’s academic education and gender were assessed as well. These comparisons will be shown later in the analysis.
* There were no patients in the study under 18 years of age (0%), for this reason the chart in this part is flat. See table and diagrams 1, 2 for age and education distribution, respectively.
Table 1 and diagram 2: Patients age distribution
Ages Amount Percent
21 2.4% 28.6% 19.0% 50.0% Unfinished secondary Secondary College Higher university Diagram 3: Patient’s education level
After understanding the demographics data representing the study participants, we could analyze the relation between the different parameters, for the purpose of assessing the influence of each of them on the level of patients understanding.
- In order to address the question if there is a difference between gender - males and females in their understanding level of the explanation given by the doctor, I performed an independent t-test and The difference between the ganders was not significant, t(82)=0.17,p=0.86. Men's (M=4.06, SD=1.23 ( level of understanding was very close to women's (M=4.02, SD=1.15(. The assumption of gender influence was rejected.
22 - In order to address the assumption that there is a connection between academics education level and
understanding level of the patient, I performed a spearman correlation test. The correlation was not significant, r=0.06, p=0.56, meaning that there is no connection between academics education level and understanding of the doctor.
11.2 Explanation given by doctor
Another way to evaluate the level of education of the patients that are going through biological therapy, was to assess the preparation that they are getting from the department itself, specifically speaking – by the doctors. The patients were first asked to mark if they got explanations from their doctors concerning the
possible ADR’s, and later they were asked to answer the questions in which method of explanation doctor has used.
71 patients, which are 85% of the study group, claimed that they got an explanation concerning the adverse effects of the drugs, prior the treatment. In contrast, only 13 patients, which
are 15%, claimed that no explanation was given. See table 2.
When checked the method used by the doctor to explain the specific treatment and ADR’s, more than half (55%) of the
study group answered that the doctors explained them verbally only, without giving an additional written information, while third of the study group (33.3%) got them
both. See table 3 and diagram 4 for results analysis.
Table 2: “6. Prior to the beginning of the treatment did the doctor explained you about the possible therapy adverse effect?”
Yes 71 84.5% No 13 15.5% Total 84 100.0%
Table 3: “7. In which method did the doctor explained you about the treatment?”
The doctor gave me a written explanation only 10 11.9% The doctor explained me verbally only 46 54.8% The doctor gave me a written explanation and
also explained verbally
28 33.3%
23 11.9%
54.8% 33.3%
The doctor gave me a written explanation The doctor explained me verbally
The doctor gave me a written explanation and also explained verbally Diagram number 4: Method of doctor explanation
In order to address the question if there is a difference between patients who got both verbal and written explanation and patients who got only one explanation (verbal or written) in their level of understanding, I performed an independent t-test. The difference was significant, t(82)=2.87,p<0.01. Patients who got both of the explanation (M=4.53, SD=0.74) understood the doctor better than those who got explanation using only one method (M=3.78,SD=1.27).
11.3 Doctor – patient meeting
After understanding the explanation method used by doctor, deeper evaluation of the patients education regarding the biological treatment by the doctor was needed, and patients were assessed for their ability to get an answers to their questions aimed to the doctor in the department. While 8% of study group did not have any
questions, and 83% of the patients got sufficient answers to their questions, 9% of the group complained for the partially answered or absent of proper answers for their questions, a data that
may point for a lack of time during Doctor – patient meeting. See table 4 and diagram 5 for results analysis.
Table 4: “8. After the explanation about the treatment, did the doctor answered your questions?”
No 2 2.4%
Yes, doctor answered on all of my questions 70 83.3% Answered on some of my questions 5 6.0% I didn’t have any questions 7 8.3%
24 9. Did you have enough time to discuss with your physician about the biological
therapy and ask questions before starting it?
3%
83% 6%
8%
No
Yes, doctor answered on all of my questions
Answered on some of my questions
I didn’t have any questions
Diagram 5: Getting answers for patient’s questions
The assumption of time deficiency during doctor appointment with patient prior the beginning of therapy was also evaluated, and found that 86% of the study group does feel that the amount of time given was enough for a proper discussion.
See table 5 (representing q. number 9) sufficient time analysis:
Answers Frequency Percent Yes 72 85.7% Discussion was limited, I feel I needed
more time
12 14.3%
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To measure this assumption of time deficiency using higher resolution, it was also decided to evaluate why an accumulative amount of 9% of the study group did not get answers at all (3%), or got only partial answers (6%) for their questions. For the purpose of answering this assumption, a cross analysis only between those two specific groups of patients has been done with question number 9 (see table 5 above) using a chi squared test.
The correlation was significant η2(1)=5.50, p=0.02, As can be seen at the table 6: In the study group that did not get answers to their questions - 42.9% had enough time in the
meeting and 57.1% did not have enough time. In contrast, in the study group that got proper answers to their questions - 81.4% had enough time in the meeting and only 18.6 didn't have enough time.
Those finding are suggesting that patients that did not get answers for their questions felt more as they did not have enough time in the meeting. And the assumption was confirmed. See diagram 6.
Diagram 6: Question – time cross analysis
Table 6 : Questions * Time Cross tabulation
26 70.2% 7.1% 22.6% Yes No Not sure 0.0 20.0 40.0 60.0 80.0 Yes No Not sure
Moreover, it has been found that most of the patient that did not get answers or got only partial answers from the doctor was at the 46-55 years of age group (71.4%) and only 14.3% was at the 56-65 years age group. No one was older than 65.
Patients were further asked to answer a chain of questions that are directly regarding the ADR’s and may give a window to check the
level of patient education concerning the biological therapy. - When the patient were asked in a
simple way if they know which negative effects the drug can have on
their body, 70% chose yes, while only 23% and 7% chose Not sure, and No, respectively. See Diagram 7. Diagram 7 (shown above): Does patient know the ADR’s of drug (regarding
q. 13)
- For better evaluation if patient is really understands the meaning of the ADR’s and what to do in a case where one or more severe adverse effect are shown, a control question was created to accentuate the understanding level of patient. The question ensured if the patient is aware in case of which symptoms (for example - fever) he\she should go to the emergency room?
When analyzing the answers, it was found that 24% of the patients were not sure, 23% did not know, and only 54% knew exactly when to transfer themselves to the hospital.
See table 7 (regarding q. 14) analysis.
Table 7: “14. Do you know in a present of which symptoms (for example - fever) you should go to the emergency room?”
Frequency Percent
Yes 45 53.6%
No 19 22.6%
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The 23% of the study group who marked themselves as not knowing enough about the ADR’s will be checked together with the study group who answered “Not sure” (24%) for a common variable that may be common for all or most of them, for example gender, specific age group, level of academic education and if they did or did not get the drug information literature.
In order to address the question if there is a difference between males and females in their knowledge about the presence of which symptoms they should go to the emergency room, I performed a chi squared
test. The correlation was not significant η2
(1)=0.25, p=0.87. Meaning there was no effect by the gender. See table 8 for results analysis.
Another test was performed for a purpose to find connection between age and knowledge in a presence of which symptoms they should go to the
emergency room. The
correlation was not significant η2
(4)=2.51, p=0.64. Even so, in a supersizing way, older
patient (65+) knew about the symptoms (77.8%) then did not know (22.2%). See table 9 for results analysis.
Table 8 : Gender * Symptoms Cross tabulation
Symptoms Total Yes No or Not sure
Gender Male Count 17 14 31 % within Gender 54.8% 45.2% 100.0% Female Count 30 23 53 % within Gender 56.6% 43.4% 100.0% Total Count 47 37 84 % within Gender 56.0% 44.0% 100.0%
Table 9: Age * Symptoms Cross tabulation
Symptoms Total Yes No or Not sure
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46.4% 45.2%
8.3%
Yes No Not sure 0.0 10.0 20.0 30.0 40.0 50.0 Yes No Not sure
One more test has been performed to find connection between academic education level and knowledge in a presence of which symptoms patients should go to the emergency room. The correlation was not significant η2 (2)= 050.0, p=0.22. This means that there was no effect by
the academic level of the patient. See table 10 for results analysis.
When patients were asked (q. 16) if they got the drug information literature before the beginning of the treatment (which is a literature that is supplied by the pharmacy industry and includes all the necessary information regarding the drug use, ADR’s and
simple explanation for a non - medical people). The results distributions were almost equal between the patients who got the literature prior the therapy (46% of study group) to those who did not get it (45% of study group). The study group section which did not get the literature prior to the
beginning of the therapy is representing a big portion of patients that might could get more information about the biological treatment, and gain more knowledge and understanding regarding it. See Table 11 (shown above), and diagram 8.
Diagram 8: “Did patient got the drug information literature review?” Table 10: Education * Symptoms Cross tabulation
Symptoms Total Yes No or Not sure
Education secondary or less Count 15 11 26 % within Education 57.7% 42.3% 100.0% College Count 9 7 16 % within Education 56.2% 43.8% 100.0% higher university Count 23 19 42 % within Education 54.8% 45.2% 100.0% Total Count 47 37 84 % within Education 56.0% 44.0% 100.0%
Table 11: “16. Did you get the drug information literature before the
beginning of the treatment?”
Yes 39 46.4% No 38 45.2% Not sure 7 8.3%
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In order to address the connection between the knowing in a presence of which symptoms patients should go to the emergency room and getting prior to the therapy the drug information
literature i used a chi squared test, and found out that the correlation was significant η2(1)=7.41, p<0.01.
As can be seen in table 12, in the group that knows with which symptoms they need to come back to the clinic,
59.6% got the information about the drug and 40.4% did not get the information. In contrast, in the group that did not know with which symptoms they need to come back to the clinic, 29.7% got the information about the drug and 70.3% did not get the information.
See diagram 9.
Diagram 9: Drug information – symptoms cross analysis
Due to those findings, a conclusion that there is no correlation between the variables: gender, age and academic state to the education level of the patients regarding the ADR’s was made. In contrast, a correlation between getting a drug literature prior the biological therapy was proven and will lead for further recommendations accordingly.
Table 12: Symptoms * Drug Information Cross tabulation
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- In order to address the question if there is a relation between the patients who knows in the presence of which symptoms they should contact the emergency room and the level of understanding of doctor
explanation, comparing to those who did not know, I performed an independent t-test. The difference was significant, p=0.02. Patients who knew with the presence of which symptoms they should go back to the clinic (M=4.29, SD=1.08) understood the doctor better than those who did not know (M=2.36, SD=1.22).
63% of the study group replied “yes” for the question if the doctor explained them what will happen in case the drug will have no effect, or will cause some complications. See table 13
88% claimed that it is clear for them how many weeks after they should come again for a monitoring meeting with the doctor. And 61% marked that the doctor explained them which tests they should do before and during the treatment, and why. See table 14 and 15, respectively.
Table 14:”17. Is it clear for you after how many weeks you should come again for a
monitoring meeting with the doctor?”
Yes 74 88.1% No 5 6.0% Not sure 5 6.0% Total 84 100.0%
Table 13: “15. Did the doctor explain you what will happen if the drug will have no
effect on you, or will cause you complications?”
Yes 53 63.1% No 17 20.2% Not sure 14 16.7% Total 84 100.0%
Table 15:”18. Did the doctor explained you which tests you should do before and
during the treatment, and why?”
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As an overall summary of the Doctor – patient meeting and explanation chapter analysis, patients needed to choose from 1 (lowest) to 5 (highest) level of explanation clarity. See table 15 for analysis.
Table 15:” 10. How clear was the explanation by the doctor about the biological benefits and adverse effect?”
answers Frequency Percent
1 5 6.0% 2 5 6.0% 3 11 13.1% 4 24 28.6% 5 39 46.4% Total 84 100.0%
While 25% of patient chose 1-3 clarity levels in accumulation, 29% chose level 4, and 46% choose the highest and best understanding and clarity level. See diagram 10.
Diagram 10.Treatment and ADR’s explanation clearance
32 11.4 Previous knowledge and sources
When patients were asked if they had previous knowledge about the biological therapy, 61% answered that they did.
See table 16 below (regarding q. number 11)
Table 16: “11. Did you have previous knowledge regarding the biological treatment?”
Answers Frequency Percent Yes 51 60.7%
No 33 39.3%
Total 84 100.0%
When patients asked to mention the main sources (more than one) in which they got through the majority of the information, 70% named their doctor as the main one, followed by 37% which used the internet and online sources. 8% got information from their friends. Only small percentage of - 2%, 1% and 1% got their knowledge mainly from practice nurse, magazines or other, respectively.
The large amount of patients that has used the internet for one of their primary or secondary source of information raised the idea of the option to create an online database that includes easy for understanding websites and video channels which might be helpful for a better understanding of the biological therapy and for a higher education level regarding it.
11.5 Nurses as an integral part of patient’s education
33 3.3% 0.0% 8.3% 23.3% 65.0% 0 10 20 30 40 50 60 70 1 2 3 4 5
After analyzing the questioners, 71% of the patients mentioned that the nurse has showed them how to use the drug, see table 17 for analysis, and from this
study group they had to choose from 1 (lowest level of understanding) to 5 (highest level of understanding) how clear the explanation by the nurse was for them. In this part 65% of study group claimed that the explanation was 5\5 scale, and another 23% claimed the explanation was 4\5 scale. Results are shown in Diagram num. 11
Diagram 11: clarity level of nurse’s explanation
When asked if they know how to store the drug at home, 65% marked yes, while the rest of the patients were not sure, or didn’t know. Important to mention that storing the drugs in a proper way and temperature is very important for the efficiency of the treatment.
See table 18 (regarding q. 20) for analysis
Table 17:”21. Did the nurse showed you at the first time how
to use the drug?
answers Frequency Percent Yes 60 71.4
34 0.0% 6.0% 15.5% 31.0% 47.6% 0 10 20 30 40 50 1 2 3 4 5 0.0% 1.2% 9.5% 20.2% 69.0% 0 20 40 60 80 1 2 3 4 5
Table 18: “20. Do you know how to store the drugs at home after you buy them?”
11.6 Patient’s satisfaction and level of security regarding the biological treatment in our department
As an overall analysis of the patients satisfaction level in our department of Rheumatology in Kauno Klinikos, patients were asked
to answer the question if they were happy about the explanations that they were given in our department prior to the beginning of the biological treatment. As an answer, patients used a 1-5 scale, when “1” is not happy at all and “5” is very happy.
48% chose option 5, and another 31% chose option 4, which points for a high satisfaction level among our patients.
See Diagram 12 (shown above): Patient’s satisfaction regarding prior therapy explanation.
Patients were also asked for their feeling regarding any concerns and questions that they have during all the process of therapy and if
they feel they can ask questions and get proper answers from their doctor concerning their biological treatment. Patients used a 1-5 scale again, and
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found out that 69% chose 5\5 level, and extra 20% chose 4\5 scale which in accumulation it’s about 89% of biological therapy patients who feels they can contact and discuss with their doctors in any time regarding their concerns and to get a proper answers.
See diagram 13 (shown above): Patient communication with the doctor
When patients required choosing out of 1-5 scale of confidence level to go through the biological treatment in our clinic, while 90% of
the study group was distributed in the range of 4\5 or 5\5 confidence level, only 11% chose 3/5, and no patient (0%) chose less than that.
In conclusion, 90% of the study group chose the highest levels of
security to go through the therapy in the department.
See diagram number 14 (shown above): patient confidence level analysis
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12. Conclusions
1. Relation between age and its influence over the level of understanding of the patients has been found, as patient’s age is increasing the level of understanding is increasing too.
2. Patient’s academic education and gender showed no influence over the understanding level.
3. Patients getting explanation from the doctor using both verbal and written explanation understand the doctor better than those who get explanation using only one method.
4. The amount of time given during doctor-patient appointment was enough for a proper discussion. 5. Most (83%) of the patients got sufficient answers to their questions during the doctor meeting. 6. Most of the patients know which negative effects the drug can have on their body, only some know
in a presence of which specific symptoms they should go to the emergency room.
7. Correlation found between knowing when to contact the emergency room in case of specific ADR’s and getting a drug literature prior the biological therapy.
8. Patients know and understand when to come for a monitoring meeting with the doctor, and which tests and why they should perform during the therapy.
9. Most (75%) of patients chose the highest and best understanding and clarity level of the explanation they got in the department by the doctors.
10. Most of the patients had previous knowledge about the biological therapy.
11. The the main sources in which patients got through the majority of the information, was their doctor and the internet.
12. The nurses show and explains the patients how to use the drug in a very clear manner. 13. Only 65% of the patients claimed that they know how to store the drug at home.
14. Most (79%) of the study group chose high satisfaction levels about the explanations that they were given in our department of Rheumatology in LSMU hospital kauno klinikos prior to the beginning of the biological treatment.
15. 89% of the study group feels they can contact their doctors and discuss with them in any time regarding their concerns and to get proper answers for their questions.
16. 90% of the patients in the research chose high confidence and security levels to have the therapy in LSMU hospital Kauno klinikos clinic of rheumatology.
37
13. Recommendations
1. It has been proven that older population (56 years and above) understands better and are more
educated regarding the therapy comparing to the younger ones. An assumption was made that those younger groups act as their level of understanding is lower, when in fact they properly understand the explanation that was given by the doctor, but only think as they can gain more knowledge other than given by the department alone. Furthermore, I assume those groups are more educated regarding the therapy than what has been shown in the research, but they require a higher degree of explanation to bring them to the same point of education level as the older group is experiencing.
I recommend acting differently with those younger age groups to increase their level of understanding, by giving them more detailed explanation and longer doctor - meetings.
2. Using a dual explanation method, which contains verbally and written form of explanation to the
patients is recommended.
3. Providing of drug literature information to the patient prior the beginning of the therapy, so patient
can reread it in a more comfortable and less stressful environment (example: at home) for deeply understanding.
4. To create an approachable online database that includes easy for understanding to a non-medical
people websites, articles and video channels.
5. To create an easy to memorize and understand cartoon brochure that explains how to store the
38
14. Reference
1.
Schroeder, H. W., & Cavacini, L. (2010). Structure and function of immunoglobulins. Journal ofAllergy and Clinical Immunology, 125(2), S41–S52. doi:10.1016/j.jaci.2009.09.046
2.
Johnston, S. L. (2007). Biologic therapies: what and when? Journal of Clinical Pathology, 60(1),8–17. doi:10.1136/jcp.2005.032300
3.
Ellis, J. A., Kemp, A. S., & Ponsonby, A.-L. (2014). Gene–environment interaction in autoimmunedisease. Expert Reviews in Molecular Medicine, 16. doi:10.1017/erm.2014.5
4.
Shirota, Y., Illei, G., & Nikolov, N. (2008). Biologic treatments for systemic rheumatic diseases.Oral Diseases, 14(3), 206–216. doi:10.1111/j.1601-0825.2008.01440.x
5.
Biological therapies in rheumatic diseases F. Conti, F. Ceccarelli, L. Massaro, E. Cipriano, M. Di Franco, C. Alessandri, F.R. Spinelli, R. Scrivo, G. Valesini6.
Kjeken, I., Dagfinrud, H., Mowinckel, P., Uhlig, T., Kvien, T. K., & Finset, A. (2006). Rheumatology care: Involvement in medical decisions, received information, satisfaction with care, and unmet health care needs in patients with rheumatoid arthritis and ankylosing spondylitis. Arthritis & Rheumatism, 55(3), 394–401. doi:10.1002/art.219857.
Barton, J. (2009). Patient preferences and satisfaction in the treatment of rheumatoid arthritis with biologic therapy. Patient Preference and Adherence, 335. doi:10.2147/ppa.s58358.
Rao, J. K., Weinberger, M., Anderson, L. A., & Kroenke, K. (2004). Predicting reports of unmet expectations among rheumatology patients. Arthritis Care & Research, 51(2), 215–221. doi:10.1002/art.202469.
Joplin, S., van der Zwan, R., Joshua, F., & Wong, P. K. K. (2015). Medication Adherence in Patients with Rheumatoid Arthritis: The Effect of Patient Education, Health Literacy, and Musculoskeletal Ultrasound. BioMed Research International, 2015, 1– 10. doi:10.1155/2015/15065810.
Lim AYN, Ellis C, Brooksby A, Gaffney K. Patient satisfaction with rheumatology practitioner clinics: Can we achieve concordance by meeting patients’ information needs and encouraging participatory decision making? Ann Acad Med Singapore. 2007;36(2):110–4.39
12.
Jimmy, B., & Jose, J. (2011). Patient Medication Adherence: Measures in Daily Practice. OmanMedical Journal, 26(3), 155–159. doi:10.5001/omj.2011.38
13.
Zaky MF, Essa EA, Bosela AA, Maghraby GM El. Biomedical AND Pharmaceutical sciences. 2018;5(11):12–20.14.
Berner, C., Erlacher, L., Fenzl, K. H., & Dorner, T. E. (2019). Medication Adherence and Coping Strategies in Patients with Rheumatoid Arthritis: A Cross-Sectional Study. International Journal of Rheumatology, 201940
15. Annexes
ANKETA PACIENTAMS, KURIE GYDOSI BIOLOGINIAIS VAISTAIS 1. Kokia yra jūsų lytis?
1) Vyras 2) Moteris
2. Koks yra jūsų amžius?
1) <18 2) 18-25 3) 36-45 4) 46-55 5) 56-65 6) 65 ir daugiau
3. Koks yra jūsų išsilavinimas?
1) Nebaigtas vidurinis 2) Vidurinis
3) Profesinė mokykla 4) Aukštasis
4. Kokios ligos gydymui jums skiriami biologiniai vaistai? Prašau užrašyti.
5. Kiek metų sergate reumatine liga?
1) 0-5 2) 6-10 3) 11-15 4) 16-20 5) 21-25
6. Ar prieš pradedant gydymą gydytojas jums paaiškino apie galimą biologinų vaist šalutinį poveikį?
1) Taip 2) Ne
7. Kokiu būdu jums gydytojas paaiškino apie gydymą biologinais vaistais?
41 1) Gydytojas man suteikė informaciją raštu
2) Gydytojas paaiškino man žodžiu
3) Gydytojas man davė rašytinį ir žodinĮ paaiškinimą.
8. Ar paaiškinęs apie gydymą gydytojas atsakė į jūsų klausimus?
1) Neatsakė 2) Atsakė
3) Atsakė tik į kai kuriuos klausimus 4) Atsakė į visus klausimus
5) Man neiškilo jokių klausimų
9. Ar jūs turėjote pakankamai laiko aptarti gydymą biologinais vaistais su gydytoju, bei pateikti klausimus prieš pradedant gydymą?
1) Taip
2) Aptarimas nebuvo išsamus, reikėjo daugiau laiko.
10. Skalėje nuo 1-5 pažymėkite, kaip gerai supratote gydytojo suteiktą informaciją apie vaistus ir jų šalutinį poveikį? 1 (Visiškai nesupratau) 2 3 4 5 (Viską supratau)
11. Ar iki kontaktosu konsultavusiu šios klinikos gydytoju turėjote informacijos apie gydymą biologinais vaistais?
1) Taip 2) Ne
12. Kas jum suteikė daugiausia informacijos apie gydymą biologinais vaistais?
42
TAIP NE NESU TIKRA/S
13. Ar žinote kokį šalutinį poveikį gali sukeiti biologiniai vaistai?
14. Ar jūs žinote, kokiems simptomams atsiradus (pvz karščiavimas) vartojant biologinius vaistu reikia vykti į skubios pagalbos skyrių?
15. Ar gydytojas jums paaiškino, kaip suprasti, kad gydymas yra neefektyvus ar kad atsirado gydymo komplikacijos?
16. Ar prieš pradedant gydymą gavote raštinės informacijos apie vaistus?
17. Ar žinote kiek savaičių praejus reiketų vėl apsilankyti pas gydytoją kad jis/ji jus apžiuretų?
18. Ar daktaras jus informavo kokius testus turėtumėte atlikti prieš ir po gydymo ir kodel?
19. Skalėlė nuo 1-5, kiek esate sunerimęs dėl galimo biologinių vaistų šalutinio poveikio? 1(Labai
neramina)
2 3 4 5 (Visiškai
nesijaudinu)
20. žinote kaip laikyti biologinius vaistus namuose juos nusipirkus?
1) Yes Taip 2) No Ne
3) Not sure Nesu tikras/a
21. Ar seselė parodė jums, kaip naudoti vaistus pirmą kartą?
1) Yes Taip 2) No Ne
21.1 Skalėje nuo 1-5 Jei (1 visiškai neaišku) ir (5 viskas aišku), kaip gerai supratote kaip naudoti vaistus pirmą kartą?
43 22. Ar jūs esate patenkinti paaiškinmais kuriuos jūs gavote mūsų klinikoje prieš biologinio
gydymo pradžią?
1 (Labai nepatenkintas/a)
2 3 4 5 (Labai
patenkintas/a)
23. Ar jūs jaučiate, kad galite klausti ir gauti atsakymus į jums rūpimus klausimus iš gydytojo apie biologinį gydymą?
1 (Visiškai Ne) 2 3 4 5 (Visiškai
Taip)
24. Ar jūs jauciatės saugiai gydantis biologinais vaistais mūsų klinikoje? 1 (Labai
nesaugiai)
2 3 4 5 (Labai
