by: Nancy Muir, PT, DPT, DHSc

The inspiration for this work:

I was diagnosed with hip dysplasia in 2014 and was faced with making the decision to have periacetabular osteotomy (PAO) surgery. I found the decision-making process to be challenging and had met other patients who also found PAO surgery decision-making to be challenging. I was a post-graduate student at the time and decided to take advantage of my dissertation research to learn more about patient decision-making around PAO surgery. Fortunately, my professors and scholarship committee were all very supportive of me doing this work! I finally finished my research and defended my dissertation in 2023. My original dissertation was well over 100 pages and did a “deep dive” into this topic and the results. I then worked over this past year to write a shorter and modified version which was published in an orthopedic surgery journal this past summer. I am thrilled to know that so many surgeons now have access to this research, and I hope it is helpful to both surgeons and their patients. I did this research with patients who had PAO surgery, but I think many of the findings would be helpful for patients and surgeons facing decisions around other hip surgeries.  

Summary of my research process:

We didn’t know much about patients’ PAO surgery decision-making processes or experiences when I started this work, so I decided to do an exploratory study. I used “qualitative methods” to learn about this topic. I felt that people who had lived through this experience would be the best people to help me learn about patient decision-making, so I interviewed 15 individuals who had made the decision to have PAO surgery. Individuals ranged in age from early 20s through late 40s and had a variety of activity levels before surgery. Some had severe symptoms and were very limited with the mobility and activity before surgery, and some had milder symptoms and were physically active. The individuals were located in many different areas of the United States, and only two shared the same surgeon. This was important to me, since I felt like it allowed me to learn the most about overall decision-making and not just the experiences of patients who were similar to one another or who all had the same surgeon.

After all of the interviews were completed, I typed them all out and then my research team and I spent a lot of time reading and re-reading them.  We developed “codes” to help describe pieces of the text and then eventually combined these into broader “categories” and, finally, into “themes” (commonalities about experiences that helped answer my research questions). This process was very intense and time-consuming. In fact, just analyzing the data took over a year!

So, what did we learn?

My research team and I ultimately developed three themes that we felt described patient decision-making processes and experiences.

These included: 1) “Life Disrupted,” 2) “It’s more than a raised toilet seat,” and 3) “Meet me where I am at.”

“Life Disrupted” describes the significant (and often negative) impact a hip dysplasia diagnosis, hip dysplasia treatments, and the decision-making process can have on a person’s life, including their physical health, mental health, emotional health, social health, and financial health, among others. Not surprising, the individuals I interviewed often had a lot of things they took into account when making the decision to have PAO surgery.

“It’s more than a raised toilet seat” is my favorite theme name and actually was a quote from one of the study participants. This theme had to do with patient information needs and the lengths patients often went through to meet their information needs. Participants often learned a lot about hip dysplasia and PAO surgery and recovery from their surgeon, but most left their surgeon’s office without having all of their questions answered and ongoing information needs. Some information needs were related to their diagnosis and treatment options, but some were related to things such as logistics around surgery and recovery or the experience of living through PAO surgery and recovery. Participants did a lot of online research to help address their ongoing information needs, some sought additional opinions from other surgeons or other healthcare professionals, and most turned to other patients to help meet the information needs.

“Meet me where I am at” is the final theme and highlighted how participants varied in how they wanted the decision-making process to unfold and what role they wanted to play in it. Some patients wanted to be the main decision-maker some wanted their surgeon to be the main decision-maker. None of the patients in this study talked about having a conversation with their surgeon about what role they wanted to play in the decision-making, and there seemed to be an element of luck when patients went to surgeons whose decision-making processes and roles aligned with theirs.

Based on the thematic analysis, there were three things (“facilitators”) that seemed to help patients the most when making the decision to  have PAO surgery. These included when:

1. Patients felt that the purpose and goals of surgery aligned with what mattered most to them as far as reasons to have surgery and what they expected to gain from surgery.
2. Patients’ information needs were met.
3. Patients played their preferred decision-making roles during the actual decision-making process.

When these three things were achieved, patients described being more confident with their decision to have PAO surgery and described being more satisfied with their decision-making experience.

My next steps are to develop an actual decision-making tool that can be used by patients and surgeons when making PAO surgery decisions. The decision-making tool would include information, questions, prompts, or exercises that could be used to make sure that all three of these decision-making facilitators happen for all patients. Since that may take some time, I published a list of questions and prompts for surgeons and also made a decision-making checklist that surgeons can use in the clinic to help with shared decision-making for PAO surgery.

Although this was not a part of the published article, here are some recommendations I would give to patients are who making the decision to have PAO surgery (or any surgery!)

1. Explore your personal preferences, values, goals, and expectations. Ask yourself:

What are my treatment options? What are the biggest potential risks and benefits of each option?

If you don’t know your treatment options or don’t feel like you fully understand the possible risks and benefits of each for your personal situation, share this with your surgeon and other care team members.

What matters to me the most when making this surgery decision (this could be related to the actual surgery, outcomes of surgery, or logistical things such as timing of surgery or having social support around surgery)?

Share this information with your surgeon and other care team members.

What do I expect life to look like if I have surgery? What do I expect life to look like if I don’t have surgery?

Share these with your surgeon and other care team members. Ask if they agree with your expectations.

2. Figure out your information needs. Ask yourself:

What do I need to know to feel comfortable making a surgery decision? If you have unmet information needs, discuss these with your surgeon and other care team members. They may not be able to fully meet your needs since sometimes patients have information needs that are not related just to their diagnosis or proposed treatments. In this case, ask them for additional referrals or other resources to help you meet your information needs. Additional referrals or resources could include people like other surgeons, physical or occupational therapists, mental health therapists, financial services, social workers, healthcare navigators, nurses, and other patients, depending on your unique information needs. If appropriate, ask your surgeon or other care team members if you can make a follow up appointment with them to share what you’ve learned and discuss how it relates to your specific situation and decision-making.

3. Reflect on your decision-making role preferences. Ask yourself:

Is there anyone else I want involved in the decision-making process?

What role do I want to play in this decision?

Do I want to be the main decision-maker? Do I want my surgeon to be the main decision-maker? Do I want to share the decision making with my surgeon?

Discuss your preferences with your surgeon and let them know what decision support you would like from them.

Disclaimer: The information on the Miles4Hips website is meant for informational purposes only. While our goals are to promote understanding and knowledge of hip dysplasia and to empower patients and their families in healthcare decision making, we cannot guarantee accuracy or appropriateness of the information for your specific condition or circumstances. The information on this site is not meant to take the place of the professional judgment of your medical providers. Individuals should always seek the advice of your physician/surgeon, physical therapists, and other qualified health care provider with any questions you may have regarding a medical condition or treatment. Individuals should never disregard the advice of your medical providers or delay in seeking it because of something you have read on this website.