Abstract
Background
Aim: The aim of this study is to determine the symptoms, pain, and function changes experienced by rheumatoid arthritis patients during the COVID-19 pandemic.
Method
This descriptive study was completed with a total of 119 patients from the rheumatology clinic of a university hospital who met the follow-up research criteria and agreed to participate in the study. Descriptive features question form, pandemic period disease characteristics form, and Visual Analogue Scale were used to collect data.
Results
The mean age of the patients was 48.53 ± 10.24, the duration of the disease was 69.63 ± 37.02 months, the average visual analog scale values before the pandemic period were 3.77 ± 1.40, while the average visual analog scale values during the pandemic period were 5.02 ± 1.57. The most common patient complaints were hygiene problems (p < .001), dressing problems (p < .001), and nutritional problems (p < .001) due to increased pain during the pandemic period. It was determined that the patients needed a health care professional for self-care (p < .001), injections (p < .001), and pain management (p < .001) during the pandemic period.
Conclusions
During the pandemic period, patients with rheumatoid arthritis (RA) stated that they needed the support of a health care professional for self-care, injections, and pain management.
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2, COVID-19) first appeared in China in December 2019 (
Wu et al., 2020
) and was later reported and described by WHO as a global pandemic on March 11, 2020. After the start of the COVID-19 outbreak, many countries made arrangements to avoid a health care lockdown and to cope with the increasing number of patients. In order to slow the spread of COVID-19 and not increase the burden on hospitals, the authorities initiated “stay at home, home safer” campaigns. In addition, individuals with chronic diseases were prohibited from leaving their homes due to the vulnerable population in Turkey. To focus on the care of COVID-19 patients and avoid unnecessary bed occupation, deferred routine medical activities, including planned hospitalizations and consultations, have been canceled. At the same time, patients with rheumatoid arthritis (RA) were not given physical examination appointments due to restrictions during the pandemic period. During this period, patients continued to buy their prescription drugs from pharmacies without the need for a new doctor's prescription, as per the Ministry of Health directive for all patients with chronic diseases. . Therefore, patients had access to their medication but not the assistance of a health care professional.The transition to remote health care provision during the COVID-19 outbreak has become particularly important for individuals diagnosed with RA, due to the increased risk of comorbidity and susceptibility to infection (
Howren et al., 2020
). In terms of COVID-19, patients with rheumatic diseases may be at higher risk of infection (Sarzi-Puttini et al., 2020
).RA is a chronic inflammatory multisystem disease that causes joint pain, swelling (synovitis), stiffness, and muscle wasting around the affected joints. Pain, stiffness, swollen joints, fatigue, and joint deformities seen in the later stages of the disease are common symptoms of RA (
Mohammed, 2020
). These conditions affect patients physically, mentally, and socially from the early stages of the disease (Mohammed, R. H. A. (2020). Introductory chapter: Rheumatoid arthritis-overview of current facts and strategies. Rheumatoid arthritis-other perspectives towards a better practice. IntechOpen. Retrieved from https://www.intechopen.com/chapters/72458. Date of access: 8 June 2021
Salaffi et al., 2009
). Therefore, prevention of inflammation and pain relief in treatment are important for symptom control (Kwoh et al., 2002
). Nonsteroidal anti-inflammatory drugs (NSAIDs) are used in the symptomatic treatment of rheumatoid arthritis. Corticosteroids are used as bridge therapy in the initiation of the effects of drugs in the treatment of disease-modifying antirheumatic drug (DMARD).In addition to pharmacologic treatment, disease management also plays an important role in symptom control. With the emergence of new treatment strategies in rheumatology and the professionalization of services, there is a greater need for health care professionals in rheumatology to play a role in disease management. Nurses assuming advanced and expanded roles today achieve great success in the care of rheumatology patients (
Kelly et al., 2015
). Nurses' caring roles include patient self-management support, patient education and counseling, information about intra-articular injections, medication management, self-injections, coordination with other health care professionals, consulting on the phone, and training on biologic treatments (- Kelly A
- McKee G.
- van Eijk-Husting Y.
- Ndosi M.
- O’Sullivan D.
- Menzies V.
- Minnock P.
- et al.
Nurse Sensitive Outcomes in Patients with Rheumatoid Arthritis (RA)–a Systematic Literature Review.
Annals of the Rheumatic Diseases. 2015; 74 (In this issue): 1340https://doi.org/10.1136/annrheumdis-2015-eular.4837
Garner et al., 2017
; Schiff et al., 2017
). During the COVID-19 pandemic, patients with RA could not go to the hospital and tried to stay at home as much as possible. For this reason, it is thought that the disease management of patients with RA may have been interrupted resulting in inadequate physician and nurse support, and increased pain and loss of function. However, no research has been found in the literature on the problems experienced by patients with RA during the COVID-19 pandemic period. This study was designed to determine the effect of the COVID-19 pandemic period on disease management, pain, and function changes in patients with RA.- Schiff M.
- Takeuchi T.
- Fleischmann R.
- Gaich C.L.
- DeLozier A.M.
- Schlichting D.
- Kuo W.-L.
- Won J.-E.
- Carmack T.
- Rooney T.
- Durez P.
- Shaikh S.
- Hidalgo R.P.
- van Vollenhoven R.
- Zerbni C.A.F.
Patient-reported outcomes of baricitinib in patients with rheumatoid arthritis and no or limited prior disease-modifying antirheumatic drug treatment.
Arthritis Research & Therapy. 2017; 19: 208
Methods
Research Type and Purpose
A descriptive design was used to determine the symptom management, pain, and function changes experienced by patients with RA during the COVID-19 pandemic.
Place and Time of the Study
The study was conducted between October 15, 2020, and December 15, 2020, with patients with RA who were followed up from the rheumatology clinic of a university hospital.
Design and Sample
The study sample consisted of patients who were followed up from a university hospital's rheumatology clinic, met the research criteria and agreed to participate in the study.
Inclusion Criteria
Diagnosed with RA before March 2020, aged >18 years, no hospital visit for RA follow-up for 6 months from the onset of the pandemic, non-smoker, non-alcoholic, not taking biologic DMARDs, and disease in remission.
Exclusion Criteria
Having a chronic disease other than RA, having a different rheumatologic disease other than RA, have had a COVID-19 infection, having COVID-19 infection during data collection.
Data Collection Tools
In collecting the data, a questionnaire prepared by the researchers containing the descriptive characteristics of the patients, a form consisting of open-ended questions prepared by the researchers by scanning the literature, and a visual analog scale (VAS) were used.
Descriptive characteristics form
A form of 7 questions was created for sociodemographic and RA disease effects such as gender, age, educational status, economic status, family structure, where they live.
The pandemic period disease characteristics form composed of open-ended questions
This form consists of 2 parts and includes 5 open-ended questions. The forms were filled on the basis of patient statements. The questions in this form are derived from published research on the disease and symptom management of patients with rheumatoid arthritis during the pandemic. Questions related to problems in studies similar to our study were prepared (
Howren et al., 2020
; Michaud et al., 2020
; Sarzi-Puttini et al., 2020
). This form was prepared to collect data on the changes in RA symptoms caused by the inability of patients to go to the hospital during the pandemic period. The form included questions about the problems that patients may have experienced due to the inability to access health care services and the questions are:- 1.How did you cope with your illness during the pandemic period?
- 2.How did you cope with your pain during the pandemic period?
- 3.How did the pandemic period affect your treatment?
- 4.On what issues did you need health care professional help during the pandemic period?
- 5.In which life activities did you have difficulties during the pandemic period compared to the previous times?
The answers given by the patients were categorized by the researchers, and then statistical analyzes were made.
The categorization of the responses given by the patients was as follows:
- -The answers given by patients to the question of their ability to manage their illness during the pandemic period: "I could not cope at all (unable to manage category)", "my pain got worse (not able to manage)", "I continued to use my medications (drug management category)".
- -Answers given by the patients to the question of how you coped with your pain during the pandemic period: "I used my drugs (drug category only)", "I took medication as well as using complementary alternative drugs (drug + complementary alternative medicine category)", "I could not cope with my illness (not coping category)".
- -The answers given by the patients to the question of how the pandemic period affected your treatment: "I think my treatment is badly affected (yes category)", "I think my treatment can continue (no category)".
- -The answers given by the patients to the question of which subjects did you need health care professional help during the pandemic period: "I do not know how to do my personal hygiene (self-care category)", "I cannot administer my medications in injection form (injection category)", "I have doubts about how often I can take my pain medication (pain management category)".
- -The answers given by the patients to the difficulties in life activities: "Difficulty in peeling fruit and chopping vegetables with a knife (nutrition category)", "inability to cook (nutrition category)", "inability to tie a scarf (dressing category)", "difficulty in bathing (hygiene category)", "difficulty in making up (hygiene category)) "," Difficulty shaving a beard (hygiene category)", "Difficulty cleaning the house (hygiene category) "and" Difficulty dusting at home (hygiene category) ".
Visual Analog Scale (VAS)
It is a form that includes numbers and is used for grading pain. The patient's pain is marked on a 10-cm ruler, with painlessness on one end and the most severe pain on the other. The score is a scale “0” showing that there is no pain and “10” points is the most severe pain possible. It is stated that VAS is more sensitive and reliable in measuring pain severity than other one-dimensional scales (
Cline et al., 1992
; Collins et al., 1997
). With this scale, the pain intensity of the patients before the pandemic and the pain intensity during the pandemic period were measured. Patients were asked: “What was the severity of your pain before the pandemic? And what is the severity of your pain these days? Please mark your answers on the VAS.Research Implementation
Patients who met the inclusion criteria and agreed to participate in the study were asked to fill in the data collection tools given to them. The forms were collected in the hospital environment by meeting face-to-face. The purpose of face-to-face data collection is to ensure that the data requested is filled in completely. All data collection forms were completed by same researcher. Data collection was carried out after the patient was examined by the physician. During the data collection process, COVID-19 precautions (wearing a mask, social distancing, hand sanitizer) were adhered to. Data collection was planned in such a way that it would not take a long time for patients to complete. While filling out of the data collection forms, patients were asked to remember problems they experienced with the strict restrictions within the scope of the COVID-19 measures. The patients remember their symptom status before the pandemic period and the changes in pain and life activity during the period of staying at home during the pandemic period.
The university hospital where the research was conducted is a hospital with clean-COVID areas. Clean-COVID areas are areas where patients with COVID contact or COVID-positive can never enter. When patients with RA come to the hospital, they can switch to clean clinics depending on whether they are at risk of COVID infection. Clinics such as the rheumatology clinic, orthopedic clinic, gynecology clinic, and pediatric clinic are defined as units where the entry and exit of patients and their relatives is restricted. Individuals coming to the hospital must have an application called "life fits into the house" on their mobile phones. When the person comes to the hospital, he/she has to show the application code to the attendant at the door. The attendant at the door scans this code with his smart device and can see whether the person is positive for COVID or whether they are in contact with a COVID-positive person. If there is a suspicious situation, the person is not admitted to clinics with clean-covid areas. This criterion is applied by the ministry of health in hospitals all over the country.
Ethical Aspect of the Research
For the research, permission was obtained from the non-clinical research ethics committee of a university with the number 2020/485. In addition, all the principles of the Helsinki Declaration were followed throughout the research. They also agree to participate in research that has written consent from all patients. It has been reported that data will be collected face-to-face during the ethical permit application process.
Data Analysis
Data analysis was done with SPSS 23.0. Descriptive data are presented by number (n), mean, and percentage (%). For the comparison of the means, Wilcoxon Signed Ranks Test, Mann Whitney U test, Pearson χ2, Fisher's Exact Test table value was used.
Results
It was determined (Table 1) that the average age of the patients were 48.53 ± 10.24 and the average disease duration of the patients was 69.63 ± 37.02 months, 74.8% were female and 20.1% were male. It was also determined that the patients were mostly (38.7%) high school graduates, 72.3% lived with their family, 66 4% lived in the city center, and 63.0% had a bad economic situation.
Table 1Distribution of Some Demographic Characteristics of Patients (N = 119)
| n | % | ||
|---|---|---|---|
| Sex | Female | 89 | 74.8 |
| Male | 30 | 25.2 | |
| Education Status | Primary Education | 59 | 49.6 |
| Secondary education | 46 | 38.7 | |
| High education | 14 | 11.8 | |
| People with whom they live | Lives alone | 25 | 21.0 |
| Lives with his family | 94 | 79.0 | |
| Living place | City center | 79 | 66.4 |
| Other | 40 | 33.6 | |
| Economic status | Income less than expenses | 75 | 63.0 |
| Income is equal to expenses | 27 | 22.7 | |
| More than income | 17 | 14.3 | |
| Age | x̄±SD | ||
| 48.53±10.24 | |||
| Duration of illness (months) | x̄±SD | ||
| 69.63±37.02 | |||
SD = standard deviation
In addition, Table 2 shows that 66.4% of patients had difficulty coping with their disease during the pandemic period, 10.9% could not manage their disease during the pandemic period, and 36.1% could not cope with their pain. It was determined that 53% of patients used only medication to cope with the pain and 10.1% used medication + complementary alternative medicine. Overall, 78.2% of patients stated that the pandemic period affected their disease negatively and 52.9% of them needed the support of a health care professional during the pandemic period; in specific, they needed support most (38.7%) for the administration of injectable drugs. While the average VAS value of patients before the pandemic period was 3.77 ± 1.40, the VAS value during the pandemic period was found to be 5.02 ± 1.57. It was determined that patients mainly experienced daily hygiene problems (46.2%), difficulty in wearing clothes (37.8%), and nutritional problems (24.4%) during the pandemic period compared with the period before the pandemic period.
Table 2Distribution of the Conditions Experienced by Patients Related to Their Disease During the Pandemic Duration
| n | % | ||||
|---|---|---|---|---|---|
| Difficulty in coping with the disease | Yes | 79 | 66.4 | ||
| No | 40 | 33.6 | |||
| The ability to manage the disease | Unable to manage | 13 | 10.9 | ||
| Manage with medication | 106 | 89.1 | |||
| Coping with pain | Medication + complementary alternative medicine | 12 | 10.1 | ||
| Inability to cope | 43 | 36.1 | |||
| Only medication | 64 | 53.8 | |||
| Poor treatment | Yes | 93 | 78.2 | ||
| No | 26 | 21.8 | |||
| Needing health care professional support | Yes | 63 | 52.9 | ||
| No | 56 | 47.1 | |||
| Issues requiring health care professional support | Self-care | 21 | 17.6 | ||
| Injection administration | 46 | 38.7 | |||
| Pain management | 40 | 33.6 | |||
| VAS before the pandemic | x̄±SD | ||||
| 3.77±1.40 | |||||
| VAS during the pandemic | 5.02±1.57 | ||||
| Having daily hygiene problems | 55 | 46.2 | |||
| Having daily dressing problems | 45 | 37.8 | |||
| Having daily nutritional problems | 29 | 24.4 | |||
SD = standard deviation.
VAS score, detailed in Table 3, shows that the average VAS score of patients during the pandemic period was higher than the average VAS score before the pandemic period, and there was a statistically significant difference between the VAS score averages between the 2 periods (p = .000). In addition, it was determined that the patients had pain-related hygiene problems (p = .000), dressing problems (p = .000), and nutritional problems (p = .000) during the pandemic period. Patients needed a health care professional for self-care (p = .000), administration of their own injection medication (p = .000), and pain management (p = .000) during the pandemic period.
Table 3Distribution of VAS Values of Patients in Terms of Some Variables and Their Need for Nurse Support
| VAS during pandemic | VAS before pandemic | Test statistics | |||||
|---|---|---|---|---|---|---|---|
| Mean ± SD | Mean ± SD | ||||||
| VAS | 5.02 ± 1.57 | 3.77 ± 1.40 | Z = –6.397 p = .000 | ||||
| Having a hygiene problem | 5.31 ± 1.46 | 3.96 ± 1.66 | Z = –4.373 p = .000 | ||||
| Having a dressing problem | 5.64 ± 1.51 | 3.69 ± 1.24 | Z = –5.511 p = .000 | ||||
| Having nutritional problems | 6.00 ± 1.81 | 3.93 ± 1.39 | Z = –4.426 p = .000 | ||||
| Needing health care professional support during the pandemic period | |||||||
| Yes | No | X2 | p | ||||
| n | % | n | % | ||||
| Self-care | Having problem | 21 | 10.0 | 0 | 0 | 22.667 | .000 |
| Has no problem | 42 | 42.9 | 56 | 47.1 | |||
| Total | 63 | 52.9 | 56 | 47.1 | |||
| Self-injection | Having problem | 46 | 73.0 | 0 | 0 | 66.654 | .000 |
| Has no problem | 17 | 27.0 | 56 | 100 | |||
| Total | 63 | 100 | 56 | 100 | |||
| Pain management | Having problem | 40 | 63.5 | 0 | 0 | 53.558 | .000 |
| Has no problem | 23 | 36.5 | 56 | 100 | |||
| Total | 63 | 100 | 56 | 100 | |||
a Wilcoxon signed rank test.
b Mann Whitney U test.
c Pearson chi-square.
d Fisher's exact test.VAS = visual analog scale.
Discussion
This study was conducted to determine the effects of the restrictions during the COVID-19 pandemic on disease management, pain, and function changes in patients with RA. The COVID-19 pandemic is severely impacting the management of a chronic disease such as RA (
Favalli et al., 2020
). Restrictive measures applied in most countries around the world have negative consequences on disease activity and quality of life, especially for patients with RA. Our research results add new information to the literature. This study showed that during the pandemic period, it was difficult for patients to cope with and manage their disease and its ensuing pain due to the inability to go to the hospital. In addition, we learned that patients (10.1%) made additional searches to cope with their pain. Costantino et al., 2021
, in their study to determine risk factors and treatment compliance in French patients during the COVID-19 pandemic period, generally stated that more than 30% of patients missed the dose of one of their drugs (Costantino et al., 2021
). They stated that this change was mostly caused by the fear of contamination while buying drugs from the pharmacy. In addition, almost two-thirds of patients who disrupted their treatment reported an exacerbation of disease activity. Similarly, Michaud et al., 2020
stated that in the COVID-19period patients are concerned about whether they will survive an infection, how their medication will affect their condition, and the impact of the pandemic on access to medicines and health care. A group of patients also reported that anxiety and stress worsen their arthritis symptoms (Michaud et al., 2020
). Similarly, in our study, it was determined that patients who could not go to the hospital had increased pain and difficulty in coping with their illness; moreover, patients experienced difficulties in daily hygiene, and nutrition and clothing activities as a result of the increase in their pain. It was observed that disease symptoms worsened in patients with RA during the pandemic period.It is established that chronic diseases require continuous health care professional support. Patients with RA should be encouraged to continue their treatment and care during the COVID-19 outbreak. Such an incentive can prevent disability, low quality of life, and patient burden that may occur due to disease exacerbation. In addition, discontinuation or disruption of ongoing treatments can adversely affect patients' quality of life (
Mikuls et al., 2020
). In the literature, chronic diseases affecting symptom management due to COVID-19 have been reported as diabetes, hypertension, and chronic obstructive pulmonary disease (- Mikuls T.R.
- Johnson S.R.
- Fraenkel L.
- Arasaratnam R.J.
- Baden L.R.
- Bermas B.L.
- Chatham W.
- Cohen S.
- Costenbader K.
- Gravallese E.M.
- Gravallese E.M.
- Kalil A.C.
- Weinblatt M.E.
- Winthrop K.
- Mudano A.S.
- Turner A.
- Saag K.G.
American College of Rheumatology guidance for the management of rheumatic disease in adult patients during the COVID-19 pandemic: Version 1.
Arthritis & Rheumatology. 2020; 72: 1241-1251
Chudasama et al., 2020
). No research has been found to determine the difficulties experienced by individuals with rheumatologic diseases owing to the inability to receive adequate care support during the pandemic process. In our study, it was determined that patients needed professional support in self-care, self-medication, and pain management during the pandemic period, contrary to previous periods. This need felt by patients proves how vital health care professionals are in the disease management of patients. Often as part of disease management, physicians and nurses provide patient education to support patient self-management which aims to increase the knowledge and skills of patients in managing their condition and improving or maintaining their own health and quality of life (Coster et al., 2018
).Limitations
The limitations of this study include conducting the study in a single hospital, collecting data during the COVID-19 pandemic period, and not using a self-care scale as a data collection form.
Conclusions
As a result of our research, we determined that patients with RA had increased pain during the pandemic period compared with before it and had difficulties in daily hygiene, and dressing and nutrition activities. During the pandemic period, it was found that some patients used alternative treatment options other than medication to cope with these difficulties. We think that experiencing nutritional, dressing, and hygiene problems during the pandemic period may have caused patients to need the support of a health care professional. It would be beneficial to carry out studies that include remote monitoring and attempts to increase movement activity at home to improve these results. In addition, we recommend planning studies to improve the symptoms of individuals with chronic diseases such as RA during the pandemic period. The care needs experienced by patients show how effective health care professionals are in disease management of patients. Often as part of disease management, physicians and nurses provide patient education to support patient self-management which aims to increase the knowledge and skills of patients in managing their condition and improving or maintaining their own health and quality of life.
Declaration of Competing Interest
None.
References
- Impact of COVID-19 on routine care for chronic diseases: a global survey of views from healthcare professionals.Diabetes & Metabolic Syndrome. 2020; 14: 965-967
- Standardization of the visual analogue scale.Nursing Research. 1992; 41: 378-380
- The visual analogue pain intensity scale: what is moderate pain in millimetres?.Pain. 1997; 72: 95-97
- COVID-19 in French patients with chronic inflammatory rheumatic diseases: Clinical features, risk factors and treatment adherence.Joint Bone Spine. 2021; 88105095
- What is the impact of professional nursing on patients’ outcomes globally? An overview of research evidence.International Journal of Nursing Studies. 2018; 78: 76-83
- COVID-19 infection and rheumatoid arthritis: Faraway, so close!.Autoimmunity Reviews. 2020; 19102523
- Nurse-led care for patients with rheumatoid arthritis: A systematic review of the effect on quality of care.Journal of Rheumatology. 2017; 44: 757-765
- Virtual rheumatology appointments during the COVID-19 pandemic: an international survey of perspectives of patients with rheumatic diseases.Clinical Rheumatology. 2020; 39: 3191-3193
- Nurse Sensitive Outcomes in Patients with Rheumatoid Arthritis (RA)–a Systematic Literature Review.Annals of the Rheumatic Diseases. 2015; 74 (In this issue): 1340https://doi.org/10.1136/annrheumdis-2015-eular.4837
- American College of Rheumatology Subcommittee on Rheumatoid Arthritis Guidelines. Guidelines for the management of rheumatoid arthritis: 2002 update.Arthritis & Rheumatology. 2002; 46: 328-346
- Experiences of patients with rheumatic diseases in the United States during early days of the COVID-19 pandemic.ACR Open Rheumatology. 2020; 2: 335-343
- American College of Rheumatology guidance for the management of rheumatic disease in adult patients during the COVID-19 pandemic: Version 1.Arthritis & Rheumatology. 2020; 72: 1241-1251
- The health-related quality of life in rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis: a comparison with a selected sample of healthy people.Health and Quality of Life Outcomes. 2009; 7: 25
- How to handle patients with autoimmune rheumatic and inflammatory bowel diseases in the COVID-19 era: An expert opinion.Autoimmunity Reviews. 2020; 19102574
- Patient-reported outcomes of baricitinib in patients with rheumatoid arthritis and no or limited prior disease-modifying antirheumatic drug treatment.Arthritis Research & Therapy. 2017; 19: 208
- SARS-CoV-2 is an appropriate name for the new coronavirus.Lancet. 2020; 395: 949-950
Mohammed, R. H. A. (2020). Introductory chapter: Rheumatoid arthritis-overview of current facts and strategies. Rheumatoid arthritis-other perspectives towards a better practice. IntechOpen. Retrieved from https://www.intechopen.com/chapters/72458. Date of access: 8 June 2021
Article info
Publication history
Published online: September 03, 2021
Accepted:
August 10,
2021
Received in revised form:
June 29,
2021
Received:
March 31,
2021
Identification
Copyright
© 2021 Published by Elsevier Inc. on behalf of American Society for Pain Management Nursing.
