A BETTER WAY TO TO LIVE WITH A CHRONIC CONDITION

Envisioning management tool supporting transition into living with endometriosis

Umeå Institute of Design | Individual MFA project  | 17 weeks | 2018

In my MFA Thesis Project, I would like to investigate how interaction and service design can support endometriosis patients in the management of their condition with a focus on the quality of life.

Background


What is endometriosis?

Endometriosis is a condition in which endometrium-like type of tissue grows outside of the uterus it and it is experienced by 10% of women in reproductive age (Aggerholm & Kerksick, 2011) and expressed itself in different forms, but there is no agreement about the underlying cause (Mangtani & Booth, 1993; Mckillop, English & Elhadad, 2017) or one well-established therapy. Actually, endometriosis is sometimes labeled ‘the missed disease’ (Mastro 2000 as cited in Denny 2004).
Symptoms may vary and can include, but are not limited to, dysmenorrhoea (painful menstruation), pain at ovulation, dyspareunia (painful sexual intercourse), abnormal bleeding, chronic pelvic pain, fatigue, and infertility. Moreover the condition is underdiagnosed (Kennedyet al., 2005 as cited in Simoens et al, 2012) with the delay in diagnosis ranging from 5 (Sepulcri and do Amaral, 2009 as cited in Culley, 2013) to 8.9 years (Fourquet et al., 2010 as cited in Culley, 2013) depending on a study. There is no cure for endometriosis, but treatment alleviating the symptoms might include analgesics, hormonal therapy, minimally invasive, radical surgery and fertility treatment (European Society of Human Reproduction and Embryology, 2013 as cited in Culley, 2013).

 

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Shifting to including patients in decision-making

At the same time we see a shift in the medicine from treating patients as a body that needs to be fixed toward encouraging patients to be part of the decision-making process and active in their recovery (Forbat, 2009; McCarley, 2009), along with more holistic perspective on the care (Ellis, 1999). Also, the well-being of patients is more and more prominent in the discussion about chronic conditions (Stewart et al., 1989), that might not necessarily need an aggressive treatment at all times, but rather management and monitoring (Vercellini, 2015). Contrasting new trends with the current situation could yield interesting insight into new directions.

 

Process

Research

Desk and field research with patients, their loved ones and healthcare providers. There are three main topics that will be explored in that phase: management of chronic disease, behavior change (lifestyle adjustments) and communication around the condition.

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Co-creation, ideation & probing

Process of understanding how needs discovered in the first phase might be addressed. Focused on co-creation activities, probing and engaging end-users.

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Building, testing & reflecting

Part of the project when solutions take shape and undergo testing and evaluation.

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Outcome

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Meet VEA

VEA is a kit supporting women in the transition into living with endometriosis. It is deeply personalized as each of patients has different needs. VEA consist of a physical tracker that helps to record symptoms important for a particular individual and platform helping to introduce lifestyle changes, connect with other women and specialists as well as understand tracked data and make informed decisions. Focus of this system is on helping user to learn about their own body and achieve the best available to them quality of life.

How does VEA work?

The first face of the service is a free application that can be used without any registration. Its main goal is to provide basic information about endometriosis and screening tool for patients helping them to take steps into seeking appropriate medical care.

If the user is diagnosed she can register into the next face of the application going through onboarding process. This step is essential in preparing personalized experience that will help in the transition into living with a chronic condition maintaining the best possible quality of life. Access to the platform will be payed on a monthly basis and opportunities to use it as a part of national healthcare systems are being explored.

Receiving a token making it possible to track certain symptoms important for the individual is part of the onboarding process. While it is possible to use the system without the token it was shown through research that physical object is something not only desired by women living with endometriosis but also something that most likely will make it easier to track their condition on a daily basis.

Platform gives access to the community, Habit Nook that is a format uniting group of women who want to follow lifestyle changes in a particular area of life together and support each other while content is prepared by experts. Platform also gives the possibility to schedule calls with experts.

 

Thank you

 

Even though this project is still undergoing I already know that it wouldn't be possible without the help of people who decided to support me throughout it. Thank you to my tutors Tara Mullaney (Veryday) and Nicholas Torretta (Umeå Institute of Design), my critical friend Piotr Kuklo, classmates, organizations advocating for patients and most importantly over 100 women living with endometriosis and their loved ones who generously shared their story with me.

 

References

 

Aggerhol M. (3D/Motion Design) & Kerksick, N. (Art Director). ( 2011, March). Endometriosis.  Retrieved from https://vimeo.com/20910143

ulley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women's lives: a critical narrative review. Human reproduction update, 19(6), 625-639.

Denny, E. (2004). Women's experience of endometriosis. Journal of advanced nursing, 46(6), 641-648.

llis, S. (1999). The patient-centred care model: holistic/multiprofessional/reflective. British Journal of Nursing, 8(5), 296-301.

orbat, L., Cayless, S., Knighting, K., Cornwell, J., & Kearney, N. (2009). Engaging patients in healthcare: an empirical study of the role of engagement on attitudes and action. Patient education and counseling, 74(1), 84-90.

angtani, P., & Booth, M. (1993). Epidemiology of endometriosis. Journal of epidemiology and community health, 47(2), 84.

McCarley, P. (2009). Patient empowerment and motivational interviewing: engaging patients to self-manage their own care. Nephrology nursing journal, 36(4), 409.

ckillop, M. English, S. Elhadad, N. (May, 2017). Towards Precision Medicine for Endometriosis: Dynamic Disease Characterization Through Temporal Tracking of Patient Reported Outcomes. 13th World Congress on Endometriosis (WCE), Vancouver

imoens, S., Dunselman, G., Dirksen, C., Hummelshoj, L., Bokor, A., Brandes, I., ... & Falcone, T. (2012). The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Human Reproduction, 27(5), 1292-1299.

Stewart, A. L., Greenfield, S., Hays, R. D., Wells, K., Rogers, W. H., Berry, S. D., ... & Ware, J. E. (1989). Functional status and well-being of patients with chronic conditions: results from the Medical Outcomes Study. Jama, 262(7), 907-913.

ercellini, P. (2015). Introduction: Management of endometriosis: moving toward a problem-oriented and patient-centered approach. Fertility and sterility, 104(4), 761-763.

Icons by Yu luck

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