What if… your scoliosis treatment plan was based on your wants and needs, not only on the degrees of your curve?

What if… the social and emotional aspects of your scoliosis experience were recognized and factored into your treatment plan?

What if… there was a clear pathway in place so that you and your healthcare professionals knew what to do after your scoliosis diagnosis?

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In Canada, adolescent idiopathic scoliosis affects 3 in every 100 youth aged 10-16. Scoliosis is not uncommon, yet the current systems in place for scoliosis education and treatment in BC & beyond are resulting in many people receiving late diagnoses and feeling a lack of support. Present scoliosis treatment emphasizes physical treatment but does not fully appreciate the broad social and emotional factors of scoliosis, resulting in many scoliosis patients experiencing isolation, anxiety, and depression about their condition. 

Here at The ScoliClinic, we aim to create a positive impact on each person during each stage of their experience with us. We launched the company with the mission of ‘changing the landscape of scoliosis management in BC and beyond’ and while our first few years in business were dedicated to developing an organization that provides direct, specific, high-quality care, we are now turning our attention towards systemic change.

Long-lasting change requires systemic change, which means affecting the systems and evolving the perspectives of decision-makers so that changes can be made in important processes such as scoliosis screening, referral pathways, and education. Through meaningful systemic change, people diagnosed with scoliosis will have access to highly-refined and specific treatment plans tailored to their needs. So you may be wondering, how do we create systemic change? To start, we need a solid foundation of knowledge, to make a case for why it’s necessary.

 

“long-lasting change requires systemic change…
affecting the systems and evolving the perspectives of decision-makers”

 

With the above information in mind, we are excited to launch our FIRST official research project, The Scoliosis ‘Success’ Project in partnership with UBC and CHEOS (Center for Health Evaluation and Outcome Studies). In this study, we hope to gain a deeper understanding of what “scoliosis treatment success” means to people living with scoliosis. Our research team was motivated by the thought: “Has anyone asked scoliosis patients what they expect from treatment, and what a ‘successful’ treatment might look like to them?”

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Phase 1: Our research team performed a literature review – a compilation of previously established knowledge and research – about the definition of scoliosis ‘treatment success’. It was found that although many scientific journals discussed the effects of various scoliosis treatments, the definition of ‘treatment success’ was a) inconsistent, and b) almost always related to the degree of spinal curvature. 

Since medical professionals make many decisions based on available published research, it’s not difficult to see how scoliosis identification, referral pathways, and treatment plans are also a) inconsistent, and b) almost always related to the degree of spinal curvature. Due to these systems, people with scoliosis are often left feeling overwhelmed and confused, particularly if what they want out of their own personal scoliosis treatment does not emphasize degree of spinal curvature, and perhaps prioritizes a lack of pain or non-surgical options. 

 

“the definition of ‘treatment success’ , and therefore
the identification, referrals, and treatment plans,
are a) inconsistent, and b) almost always related to the degree of spinal curvature”

 

Phase 2:  The research team will conduct qualitative study where data is subjective, dynamic, and in this case dependent on personal experience. We will NOT be running a quantitative study, which involves collecting numbers and scores and measurements (ie. number of degrees of a spine before and after bracing). Instead, our qualitative research will focus on the scoliosis patient experience, and examples of questions that may be asked include “what was it like being diagnosed with scoliosis” and “how do you feel about __”. We have an army of 23 keen volunteers who will support us in the interview and transcription process.

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The Scoliosis ‘Success’ Project aims to interview individuals with scoliosis aged 10+ to capture their experiences from diagnosis through treatment. By doing this, we hope to create a patient-centered definition of scoliosis ‘treatment success’. The plan for this study is to run MANY interviews with MANY people from diverse backgrounds to identify trends, patterns, or inconsistencies. Our awareness about the role of social determinants such as income, education, ethnicity, and language is growing and we are committed to accurately reflecting a variety of experiences in research and scientific literature through interviews with people from all backgrounds. 

Our hope is that the data from The Scoliosis ‘Success’ Project can be used as a foundation for other studies. If decision-makers in healthcare had a clearer understanding of what is truly important to scoliosis clients, then we could work together to refine scoliosis treatment so people can get timely and affordable access to the care they want and deserve.

If you have scoliosis and live in British Columbia, see the poster below for more information. Click this link to express your interest in joining! Share your experience living with scoliosis, and contribute to the change you want to see. 

If you’re a therapist, researcher, or physician with questions or thoughts, please comment below or send a direct email to one of the contacts listed on the poster. 

Together, we can change the landscape of scoliosis management in British Columbia and beyond.

 

Research Team:

Seika Taniguchi (UBC Medicine)
Ishraq Joarder (UBC Medicine)
Dr. Beth Snow (Center for Health Evaluation and Outcome Studies)
Andrea Mendoza (The ScoliClinic)