A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: rheumatoid arthritis

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Not all diseases can be cured, but medication along with other measures can alleviate the symptoms. Rheumatoid arthritis is one such disease. Medicines for symptoms such as swellings and stiffness have become very effective. As a patient, you can find good ways to live with the disease, even if it can mean more or less regular contacts with healthcare (depending on how you are affected). Not only with the doctor who prescribes medication, but often with an entire healthcare team: doctor, nurse, physiotherapist, occupational therapist and counselor. There are aids that make everyday life easier, such as orthopedic shoes, splints and easier-to-grip faucets at home, and many hospitals also offer patients education about the disease and how you can live and function with it, at home as well as at work.

The symptoms vary, not only between individuals but also for the same individual over time. The need for care and support is thus individual and changing. Therefore, it is important that the interaction between patient and healthcare works efficiently and with sensitivity to the patient’s unique situation at the moment. Since patients to a great extent have to deal with their illness on their own, and over time become increasingly knowledgeable about their own disease, it is important to listen to the patient. Not only to improve the patient’s experience of healthcare, but also to ensure that individual patients receive the care and support they need at the right moment. The patient may not be part of the healthcare team, but is still one of the most important team players.

There are digital self-care applications for rheumatoid arthritis, where the patients who choose to use the tools can get advice and information about the disease, prepare for contacts with healthcare, and keep a digital logbook about their symptoms, experiences and lifestyle. Such digital self-care apps can be assumed to make patients even more knowledgeable about their own disease. The logbook contains relevant observations, which the patient can describe in the meetings with the healthcare provider. What an asset to the care team!

Given the importance of good continuous team play between patient and healthcare in diseases such as rheumatoid arthritis, it is important that researchers regularly examine how patients experience the interaction. Jennifer Viberg Johansson, Hanna Blyckert and Karin Schölin Bywall recently conducted an interview study with patients at various hospitals in Sweden. The aim was to investigate not only the patients’ experiences of the interaction with healthcare, but also their experiences of a digital self-care app, and how the app affected the communication between patient and doctor.

The patients’ perception of their interaction with healthcare varied greatly. About half felt prioritized and excellently supported by the healthcare team and half felt neglected, some even dehumanized. This may reflect how different hospitals have different resources and competencies for rheumatoid arthritis, but also unclear communication about what the patients can expect. Many patients found the self-care app both useful and fun to use, and a good support when preparing for healthcare visits. At the same time, these detailed preparations could lead to even greater disappointment when it was felt that the doctor was not listening and barely looking at the patient.

Collaborative teamwork and clear communication is identified in the study as important contributing factors to patients’ well-being and ability to manage their illness. The patients valued time for dialogue with the rheumatologist and appreciated when their personal observations of life with the disease were listened to. Because some of the interviewed patients had the negative experience that the doctor did not listen to the observations they had compiled in the app, the authors believe that the use of digital tools should be promoted by the healthcare system and there should be an agreement on how the tool should be used at meetings to plan care and support.

For more details about the patients’ experiences, read the article here: Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study.

The study emphasizes the importance of patient-centered care for individuals with rheumatoid arthritis, as well as the importance of considering patients’ psychological well-being alongside their physical health. An important point in the study could perhaps be summarized as follows: appreciate the patient as a skilled team player.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Viberg Johansson J, Blyckert H, Schölin Bywall K. Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study. BMJ Open 2023;13:e072274. doi: 10.1136/bmjopen-2023-072274

This post in Swedish

In dialogue with patients

Individualized treatment from the patient’s perspective

Individualized treatment, where the right patient receives the right dose of the right drug at the right time, could be interpreted as a purely medical task. After genetic and other tests on the patient, the doctor assesses, from a medical point of view, which drug for the disease and which dose should work most effectively and most safely for the patient in question.

Individualization can also be interpreted to include the patient’s perceptions of the treatment, the patient’s own preferences. Rheumatoid arthritis is a disease with many different symptoms. Several drugs are available that have different effects on different symptoms, as well as different side effects. In addition, the drugs are administered in different ways and at different intervals. Of course, all of these drug attributes affect the patients’ daily lives differently. A drug may reduce pain effectively, but cause depression, and so on. In individualized treatment of rheumatoid arthritis, there are therefore good reasons to ask patients what they consider to be important drug attributes and what they want their treatment to aim for.

In a study in Clinical Rheumatology, Karin Schölin Byvall and five co-authors prepare for individualized treatment of rheumatoid arthritis from the patient’s perspective. Their hope is to facilitate not only joint decision-making with patients who have the disease, but also future quantitative studies of preferences in the patient group.

This is how the authors (very simplified) proceeded. A literature review was first performed to identify possible relevant drug attributes. Subsequently, patients in Sweden with rheumatoid arthritis ranked nine of these attributes. In a third step, some of the patients were interviewed in more detail about how they perceived the most important attributes.

In a final step, the interview results were structured in a framework with four particularly relevant drug attributes. The first two are about improved ability to function physically and psychosocially in everyday life. The latter two are about serious and mild side effects, respectively. In summary, the most important drug attributes, from the patients’ perspective, are about improved ability to function in everyday life and about acceptable side effects.

If you want to know more about the study, read the article: Functional capacity vs side effects: treatment attributes to consider when individualizing treatment for patients with rheumatoid arthritis.

The authors emphasize the importance of considering patients’ own treatment goals. Individualized treatment not only requires medical tests, but may also require studies of patient preferences.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Bywall, K.S., Esbensen, B.A., Lason, M. et al. Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis. Clin Rheumatol (2021). https://doi.org/10.1007/s10067-021-05961-8

This post in Swedish

In dialogue with patients