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've investigated how interaction and service design can support endometriosis patients in the management of their condition with a focus on the quality of life.
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).
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.
Survey for patients
In total I’ve 83 answers to the survey for patients were collected using online survey consisting of 17 single-choice, multiple-choice and open-ended questions focused around the experience of living with endometriosis, tracking and managing condition, introducing lifestyle changes and seeking support.
The most interesting results from the survey described changes that patients introduced to benefit their well-being. Out of 83 patients, only one hasn’t made any adjustments. 70% or more said that they adjusted Medications, physical activity, diet and social life. At the same time, 60% or more said that they adjusted Intimate relationship and/or sleep.
50% of participants said that they are not tracking their condition. Survey also showed that the ones who do track their condition usually use multiple tracking/planning methods and the biggest complaint is that information is scattered, cannot be easily accessed by the doctor and tools are not allowing to record data precisely.
Survey for partners and loved ones
In total 20 answers to the survey for the loved ones were collected using online survey consisting of 11 single-choice, multiple-choice and open-ended questions focused around the experience of supporting partner/loved one living with endometriosis, changes and seeking support.
Most of the participants claimed that they provide psychological support (19 out of 20), motivation and helping with taking the mind off of the health-related issues. The biggest challenges they perceive is seeing your loved one suffer, finding the right healthcare provider and lack of understanding from others.
More than half of the patients think that management of the condition is one of the most challenging aspects of their life with a chronic condition but from the survey for partners, we learned that only 6 out of 20 loved ones support them in this area.
Current patient's journey, interviews with experts & interviews with patients
In total I’ve conducted 6 interviews with women between mid-20s to their mid-40s with the experience ranging from being recently diagnosed to living with endometriosis for over 20 years. Also interviews with healthcare professionals (counselor, pelvic floor therapist) were conducted. Those conversations allowed me to create patient journey map taking into account different types of experience.
Pain Points: understanding disease, Finding the right specialist, Decisions on the treatment
Problems & challenges: being dismissed, finding motivation, need for education, fertility
"I was given a yellow post-it note that I had endometriosis and the rest I hat to google"
"Changes in the beginning were easy because they were necessary"
"No one ever mentioned fertility to me and that it might be a problem and maybe I should try to have children early"
Other events: tests, exams, visits, confirmed diagnosis
Pain Points: symptoms and complaints - doctors visits resulting in no diagnosis or wrong diagnosis
Problems & challenges: being dismissed, family normalizing pain since it is a common female experience, looking for validation
"They all told me it was all in my head"
"My first ever period was incredibly painful. I felt nauseous and kept throwing up my mother told me she had started her life as a woman in the very same way"
"It was a trying time because it is not like I wanted another cyst, but I wanted validation
Other events: visit resulting in referral or suspicion of endometriosis and referral for further tests
Transition into the life with a chronic condition
Pain Points: understanding how life with chronic condition will look like, saying goodbye to certain plans or dreams or putting them on hold, learning more about changes that might help
Problems & challenges: uncertainty, influence on plans and milestones, explaining "invisible" condition to others, processing this change
"With those conditions where you have flare-ups- how do you navigate in life?"
"I had to postpone my marriage as well as move to another state we were planning. Also step down from the promotion"
Other events: introducing changes, learning how to track symptoms
Pain Points: decisions regarding treatment
Problems & challenges: limited treatment options presented, stress relating to medical decisions
"I had a hard time finding a doctor who would not suggest surgery as a first choice"
"I asked about the side effect and a lot of stuff and she didn't give me a lot of the information she [doctor] should have”
Other events: intervention at the hospital (laparoscopy, hysterectomy, other), medications/hormonal treatment (home), no interventions (observation)
Pain Points: planning future, Infertility issues
Problems & challenges: motivation, loss of the plans for the future that are not possible anymore, planning for unknown (not knowing what will be the progression of the condition)
"Changes were easier in the beginning when I was feeling really bad, and with time when you are feeling better they are just harder"
"Endo taught me that sometimes it is better to make things easier for yourself to have energy for other, more important stuff"
Life with a chronic condition
Pain Points: changing goals, Infertility issues
Problems & challenges: questioning if this is being lazy, fear of pain, medication management, access to specialists
"The hardest thing is that I feel like I'm slacking around”(on bad days)
"More than the pain itself, I have problem with an anxiety of pain. Because I don't know when the pain will come.”
"I used to get confused. I also have a blood pressure so I mixed up all my tablets"
“I have to drive 2 h to meet my gynecologist [...] I have to mention I live in the middle of the forest.”
Other events: bad days / flare-ups, changes / non-medical interventions, non-scheduled hospital intervention following visit to OBY-GYN or ER, non-scheduled change of treatment following tests or visit to OBY-GYN, scheduled hospital intervention, follow-ups, visits, tests
The last sprint was exploring pain points and patient’s outlook on their journey in online reflection exercises.
In total, I’ve collected 9 answers to the online reflection exercise. This part contributed to the understanding of the patient journey pictured along with the interview description. Also, there was more qualitative input around the areas researched in the survey. All those were integrated into journey map and guided creation of design principles.
Needs emerging from the research
Deep level personalization
Key elements: adjustment, holistic approach, body & spirit, following ones needs and goals, realistic expectations.
Management of the condition
Key elements: tracking, contact with specialists, motivation, measuring progress, celebrating progress and finding support network for bad days.
Support and understanding
Key elements: community focused around positive elements and understanding, groups undergoing the same experience, education for the loved ones.
Key elements: education, informed decisions, becoming part of decision-making process, proactive role, getting to know stories of other women.
Co-creation, ideation & probing
In two co-creation sessions participants (patients and partner) evaluated big blocks of patients journey mapped in the previous phase and adjusted those blocks to reflect their experience. Together we've mapped pain points and workarounds mostly focusing on the transition, management, and changes on top of the patient journey. Each of those areas was a starting point for ideation facilitated by "What if" questions - alternative scenarios, ideas for solutions and reflecting how they would change this patient’s experience were co-created.
There were three ideation sessions with two participants (me and one other person) utilizing inspiration cards (quotes and findings from the research phase, comparisons to public figures or brands) and “How might we” questions build on research and co-creation sessions. Sessions were built around "How Might We...?" questions.
Analysis and proposed directions
In the analysis process ideas from co-creation and ideation sessions were clustered and three main trends emerged. To be able to collect feedback for those directions each was illustrated with one concept. They are presented below.
Motivated by patients' need to educate themselves & plan - Trying to help with the uncertainty where to start.
This concept focuses on simplifying learning process about the condition and makes tracking less troublesome.
User would start with deciding on what topics she would like to focus on, make changes or learn more about. The system helps to break bigger goals into manageable steps and track changes to make sure that user knows how the body reacts.
Motivated by patients' need to process this change/loss - Trying to address the lack of tools and time.
This concept focuses on reflection and planning for the future.
The personalized printed journal contains inspirational stories of other Endo Sisters as well as space for thoughts and tracking. Thanks to electronic pen all the notes and data is stored in a cloud for an easy access.
Motivated by patients' need to be understood by loved ones - Responding to the problem of the lack of support & loneliness.
This concept focuses on amplifying empathy and helping loved ones understand your experience of endometriosis patient better.
Small token reflects level of pain and/or energy levels of the patient providing real-time data about that to the person who this token was gifted to.
Building, testing & reflecting
Part of the project when solutions took shape and underwent testing and evaluation. Finally adjusted concept My Journey was developed as the final solution under the name 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.
Comfort tracker - input device
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.
This project wouldn't be possible without the help of people who offered their time, expertise and support. 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.
Aggerhol M. (3D/Motion Design) & Kerksick, N. (Art Director). ( 2011, March). Endometriosis. Retrieved from https://vimeo.com/20910143
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