A Designer’s Perspective on Ankylosing Spondylitis and its Impact on Quality of Life

Introduction

Ankylosing spondylitis (AS), a common rheumatic disease, is a type of arthritis that mainly affects the user’s backbone. It’s one of a group of inflammatory conditions, referred to as spondyloarthritis.

The onset of symptoms generally occurs around 20 years of age, which is the most active stage of any professional [1]. The general trend in India is estimated to be between 0.1 and 0.2%.of the population. The onset of symptoms beyond the age of 50 is less than 4%, so the target population is relatively younger than most of the chronic cases [2]. For some, the condition might not have any implication at all but for a majority, it compromises the quality of life. With limited to no cure, non-pharmacological interventions are one of the predominant treatment methods for AS. Ankylosing spondylitis typically starts in the joints between the spine and pelvis (the sacroiliac joints), but it may spread up from spine to the neck. Seldom affecting other parts of the body, including joints, tendons, or even eyes.

Initial research provides a demographic background in relation to the prevalent trends and psychosocial opinions of patients in India. Further discussing the importance of ergonomics in designing an intervention, and how adjusting human factors involved might overcome work disability. A system design promoting more working flexibility is proposed, discussing how the long-term management of AS could be efficiently done using existing technology.

It is very often that the cases get undiagnosed as there are no clear testing procedures for the condition [1]. The variation of symptoms and effects opens a wide user profile for a design intervention. The needs of the patients can be very simple yet effective, like warm and cold therapy on the lower back. The condition affects the patient in various ways, primarily and most concerning is social exclusion [2]. As the condition often prevents active movement or sedentary tasks to be done. Outdoor and adventure activities are far from the daily routine of an AS patient. Riding a bike or driving to work is a challenging task in itself. Being chronic in nature AS can affect many aspects of a patient’s life. On an emotional scale it’s intimidating, frustrating, sad, and sometimes builds up anger. It becomes an important need to have the patient be aware of such emotions and changes building up [3].

A radical and more inclusive approach to design of an ergonomic intervention shall make the lives of AS patients much better.

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Literature Survey

There are not enough efforts made to study chronic disease beyond pharmacological interests in India [1]. Various findings indicate that AS has long-term complex implications on the patients. Thus it is important not only has to study what changes had the condition brought in the patient’s life but also the patient’s response to those changes.

The physical pain improves over time in most cases but a small number of people might have long-term effects. At the worst an extra bone can fuse the bones in the spine together, stopping the spine from moving.

When compared to the healthy population the AS patients have a significantly lower quality of life which is also validated by a number of studies. The impact on a patient’s life leads to depression and such psychological issues [3]. The barriers like treatment side effects, concerns about appearance, the uncertainty of the future, inability to perform daily activities. An alarming number of patients find it difficult to meet the job requirements and withdraw. The un-employability and rate of withdrawal are substantially high with AS patients [4]. With minimal job securities and the trend of low working standards in India, most low- income groups are prone to withdrawal from employment [5]. Though the cost of treatment of AS is considerably lower than other chronic diseases of such category, work disability leads to monetary issues and dependency.

It is also reported that women find it more difficult to cope up with work disability. Based on previous studies it is estimated that due to physical limitations female AS patients report fatigue, stress, and other issues linked with the inability to perform better at work, two to three times more than the male AS patients.

Poor quality of life is directly linked to a low level of education [5]. In India, for AS patients it is difficult to find alternate means of livelihood specifically in cases where the patient was in a labor-intensive job [4].

Methodology

Not only are pharmacological and non-pharmacological modes complementary but they are of equal importance for optimal management of AS. In certain cases, non- pharmacological treatments are more needed to help the patient regain confidence and efficient pain management.

Solution

The proposed solution Able is a framework of a viable system and product design which would have a much greater impact than the existing solutions (Figure 3). Leveraging the digital solutions and wide adoption of mobile computers and faster connectivity the project utilizes mobile connectivity. The lack of support groups for AS patients is major because of no existing platforms designed for social connectivity amongst a specific target demographic. The use of conventional connectivity platforms has limitations like - visibility to the wide network, privacy issues, no specific features or functions regarding the condition of AS. Typically an AS patient would require a single application for group activities, check-up appointments, regular statistics on the condition.

A part of the solution was aimed at designing the user interface of the companion application (Figure 4). The app has features like a representation of data from the Able wearable vest, instant messaging with the registered physician, regular community updates, and meeting information. Falling in line with the need for remote counseling/consultation during the COVID 19 crisis. Hospitals and health centers were out of reach for patients with long-term disabilities. The app solves the issues of physical appointments by screening regular check-ups from problems that require immediate involvement of the physician. This reduces the need of the major aspect of the solution is the design of a wearable vest based on existing technologies. The vest would have two features, the elastic and supporting straps to help maintain a good posture for a longer duration of sitting, record muscular movement and tensions to alert the user to take breaks. The vest had a hot and cool therapy feature that utilizes Peltier effect and provides the required amount of therapy for quick stress relaxation.

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The present design construction and evaluation of the project are in the exploration stage. While the project does not develop new technology, it aims to utilize the existing technology to the fullest, consolidating it into a deliverable product concept. The concept design gives glimpses of how this system and product would bring about a change. The surfacing and computer-aided modeling were developed as part of the project with ready to manufacture construction. The contribution of the work done in developing the system architecture for further development, rigorous testing, and validation. Contextual inquiry, background research into the life, pattern, and demographics of AS patients in India led to the ideation of Able.

Conclusion

AS surely has a long-term economic implication, but also family, personal and social relationship implications as well. Work disability results in depression and stress among AS patients. The primary reason is speculated to be a lack of support groups (a community of AS patients for exchanging ideas and mutual support) and low social acceptance. The ergonomic assessment has proven effects in eliminating long-term work-related disabilities. The presented solution and system framework aim to solve physiological and psychosocial issues that the patients suffer. There is a need for the development and testing of the proposed framework to prove its efficacy. Adjusting the workplace to the needs of the patients, utilization of mobile computing and wearables are some of the many possibilities of holistically managing AS conditions in the long term.