| Literature DB >> 35947187 |
Marie-Pierre Cyr1,2,3, Rosalie Dostie1,2, Chantal Camden1,2, Chantale Dumoulin4,5, Paul Bessette2,6, Annick Pina7,8, Walter Henry Gotlieb9,10, Korine Lapointe-Milot2,6, Marie-Hélène Mayrand8,11, Mélanie Morin12,13.
Abstract
INTRODUCTION AND HYPOTHESIS: Multimodal pelvic floor physical therapy (PFPT) is recommended after gynecological malignancies to treat dyspareunia. However, data to strongly support its implementation in the cancer care continuum are lacking. The aim of this study was to explore the views and experiences of gynecological cancer survivors with dyspareunia regarding the acceptability of multimodal PFPT.Entities:
Keywords: Behavior mechanisms; Cancer survivors; Pain; Physical therapy; Women’s health
Year: 2022 PMID: 35947187 PMCID: PMC9364276 DOI: 10.1007/s00192-022-05304-4
Source DB: PubMed Journal: Int Urogynecol J ISSN: 0937-3462 Impact factor: 1.932
Fig. 1Flowchart
Quotes underlying Theme 1
| Theme and subthemes | Quote no. | Quotes |
|---|---|---|
| 1. Appropriateness of treatment characteristics | ||
| 1.1. Modalities | ||
| 1 | I couldn’t imagine…what a physical therapist was going to do to fix this problem? I didn’t know you could do stretching, and this and that! We think of all the other parts of our body, but the vagina…come on, it doesn’t make any sense! You can’t imagine what the treatment is. Not everyone knows that you have muscles, that you can control them; not everyone has been through this. So, I found it interesting to see and experience this, and it worked. I couldn’t believe it. I was like…“Huh, it can’t be! Could I have done this all those years ago?” I find that extraordinary. (C10) | |
| 2 | It [the treatment] was worth it because it put me in touch with the knowledge and the tools that I was unaware of, and that stayed with me. I still have the handout, the exercises, the products...I did not know about moisturizers and lubricants, and you suggested good ones. So, we are now living in a more peaceful period. This is something that remains with me regardless of how demanding it was. I would give a 10 out of 10 for the way it was done, the contact, the information that was given. (C13) | |
| 3 | I was impressed! It’s like discovering our body from the inside out. There are areas that we don’t understand or know. How the physical therapist was able to identify a point of resistance with her touch and work it off! I was fascinated and saw the results.…For people who have never done meditation and breathing exercises, hearing: “Take your time to relax and learn to breathe,” it helps too. (C08) | |
| 4 | I had muscle tension. My God, it hurt…and I learned with the exercises. I learned how to relax, and it solved my problem. I didn’t think that would happen, so I was very happy....What I liked was the probe. You can really see when you contract and when you release. I found it interesting to visualize because you can try and force it and force it, but…if you don’t do it right, you don’t move forward. (C02) | |
| 5 | The exercises with the dilator are the best. It relieves the pressure, the part inside that produces the pain, that hurt.…When the treatment came up and you were using different sizes of dilator, I was happy. If I ever wanted to have a relationship again, the dilator they give [members of the oncology team] would not have worked. It was your number 1 dilator, it’s very tiny.…I liked the progression as I went all the way to being able to use the number 4 dilator comfortably. It made me 10 times more confident because I could get to the size of my husband and I had no fear that I could hurt myself.…The physical therapist was really awesome because she taught me different exercises and that, yes, it’s going be a little painful but if you work through it, the next day, it’s going be easier and it’s going to be easier the next day, etc. Now, I know how to stretch, and I know what pain is okay or not. (C15B) | |
| 1.2. Physical therapist | 6 | [My physical therapist] was a gem. At first, I thought: “How will I be when someone goes in around my private parts?” I didn’t know her and not many people went down there! So, her approach was very important to me. She was…a feather falling on my body; a feather, you don’t feel it. She had…a very humane approach. She was very attentive and showed interest in listening to me. I wasn’t just a number. This touch is very important because we feel alone and talking about it [our sexual problem after cancer] is already difficult. So, having someone so warm and considerate removed all my embarrassment and insecurity. (C17B) |
| 7 | The techniques she [the physical therapist] performed in my vagina could have been excruciating but not with her gentleness and respectfulness. I trusted her. She knew what she was doing.…She did me a lot of good. (C01) | |
| 8 | When you start, you don’t really know…It’s intimate, it’s not traditional physical therapy where it’s outside. You must have a great relationship with the therapist…She needs to make us understand.…We usually [my physical therapist and I] talked about how our day was going before getting to the heart of the matter. It was nice because we were like friends. She was very open. She would explain everything to me before doing anything, as if she was preparing me mentally for what was coming. She never came in and…“Bing! Bang! We do it like this!” (C04) | |
| 9 | If I had any questions, I could ask them right away. She [the physical therapist] could even guide me if there were things that I was not doing well…There was an exercise that I was not able to do, and she would tell me that it was okay. She was actually able to say to me: “Here’s what we can do.”…I thought the documentation was great and having someone, a physical therapist, to show us exactly how to do it, how to progress, helped a lot. Having subsequent sessions allowed me to validate things. (C14) | |
| 10 | I had two physical therapists and found them both welcoming and skilled. The change was easier than I thought because the second physical therapist was aware of where I was, we weren’t starting over.…I was really touched by the quality of their interactions. I had this feeling that they understood me and wanted to understand me. They let me express myself. (C06) | |
| 11 | It’s a little embarrassing showing your vulva…I had experienced this during my cancer, it’s not always easy. I had men as gynecologists, but when you go there, you don’t stay an hour, undress and…No, I prefer a woman. It was easier for me. I was more comfortable. I think she can understand more given she is a woman too. (C117) | |
| 1.3. Care delivery | 12 | To be one-on-one with somebody and not have six different people in the room was my main goal. It was the best! It felt private, like she [the physical therapist] was there to care about me, she was there for me.…Gaining the knowledge that I had during the treatment [using telehealth] would not have been as satisfying or efficient. I had contact with the physical therapist. It was more hands-on rather than talking to someone over the phone. I was able to just go and ask her. I was also able to try the exercises and understand how to do the exercises properly without pain. (C15B) |
| 13 | I’ve had a few phone consultations and I don’t feel like we’re getting to the heart of the matter. I need physical contact. At the beginning, she [the physical therapist] was doing all the manual handling, I tried at home and, personally, I was not able to do it…I needed the hands of a professional. I find it [the approach] more personalized. We feel more supported. (C16) | |
| 1.4. Intensity | 14 | The frequency, the number [of sessions] was enough for me. Obviously, there were new things to learn in every session, and it was provided. I found it [the treatment] concentrated, but well concentrated. (C02) |
| 15 | It was quite adequate. If you want to see an improvement, you must do a minimum to learn, to integrate the exercises and the ways of doing things well…to really feel an improvement. (C03) | |
| 16 | At the beginning, twelve sessions can be a lot because it is a long time when you consider three months. When you’ve completed it [the treatment] though, you realize that those twelve sessions were worthwhile and necessary to go forward gradually. (C08) |
Quotes underlying Theme 2
| Theme and subthemes | Quote no. | Quotes |
|---|---|---|
| 2. Balance between participation and treatment effectiveness | ||
| 17 | I was diligent in my treatments, but it was limiting because there was a lot to be done. At the same time, I don’t think it would have been so effective if we had done less because everything was necessary. The result wouldn’t have been as good.…It was worth it because I saw the results. On the other hand, I feel like my condition has slightly deteriorated since because there have been fewer relationships. I tell myself that the next time we have a relationship, it won’t go far because the pain will be back. Since I did not continue the exercises, I feel I have lost what I had gained during the treatment. That’s a pity. I am very happy to have participated, but today I am a little disappointed that the effects did not stay. (C01) | |
| 2.1. Participation and treatment effects | ||
| 18 | I’m so glad I participated because it really, really improved my situation. I wouldn’t have thought that there would be so much improvement because I thought the pain was meant to stay. I have no pain anymore, so it really is a miracle. It’s positive. I was lucky to have this treatment and when I think that I could have missed it all!…I would say I started to see differences after the third session. This is when I got more involved as I could say: “OK, it’s true, there is something I can do!” It made me feel good to have positive results. It was encouraging to continue…because at some point you wonder…“Hey! Do I continue or do I stop?” That’s why I kept going. (C09) | |
| 19 | The visual provided [by the biofeedback] helped me to see the results of my efforts. It was encouraging too. It was helpful to have it for some exercises. We could really see when I contracted and when I relaxed the muscles. (C03) | |
| 20 | It progressed slowly, and it was a good thing. Starting with the smallest [dilator], it is encouraging. When we see that it is possible with a smaller one, we can try with the bigger one and it was like that during the treatment. We went along gradually, when I was ready. (C13) | |
| 2.2. Participation and treatment characteristics | ||
| 21 | It was a big commitment, and it was winter. It was one more obstacle. It took me like forty-five minutes to go there. At the same time, I told myself: “It’s worth it and I’m going to do it.” So, I went along with it and it ended up very well. What motivated me was the level of knowledge I could acquire to improve the situation.…The physical therapist could have come to my house or we could have done things digitally, but I’m not sure I would have felt very comfortable. We are not necessarily alone at home. You know, husband, children…In my case, I liked getting away to be alone with my physical therapist. I also find that having a direct contact with her [the physical therapist] gives us more confidence. She shows us how to do the exercises. (C115) | |
| 22 | It’s $100 per session in the private sector; that’s a lot of money. I couldn’t afford it, a lot of women can’t. This treatment should be free for women who have had cancer. I think the government should pay for it. It seems to me that this is the continuation of the cancer treatment…I saw the benefits and it gives women confidence that there is hope, that you can control the pain. I think it should be offered a few months after the treatments, but every woman is different. It should be offered when the woman feels more comfortable because it’s not easy to let people go there after you’ve been through that [the cancer], you kind of want to put that part of your body away. The treatment could be initiated by giving a leaflet to women and the physical therapist could be available to meet us or call us so that we can communicate our fears, our questions. Then, if we wish and if we are ready, we could go further. (C122) | |
| 23 | The treatment gave me the structure I needed. I knew that it was once a week, that I was going to do my exercises, that I was going to have a plan. It gave me the structure of the things I had to do to improve…That’s motivating. I felt like I was well accompanied and doing something that moved me forward. The follow-up really helped me to understand how and why I was doing these things and it was also encouraging because the professional oversees what you are doing, so you engage more. (C08) | |
| 24 | During the treatments, [my physical therapist] would explain everything to me, tell me what was going to happen and what to do. There was always a great respect for pain and for privacy, so I was comfortable to go.…When [she] started talking to me about dilators, I thought it was a little weird, but after that it became a game. ( | |
| 2.3. Participation, women’s beliefs and attitudes | ||
| 25 | I was ready to do anything to help myself. I thought: “I have to go. What if this can help me?” And I was confident, I was like: “They don’t do this just for fun.” What also helped me were the exercises: it was touching myself, getting to touch what was blocking me. I was no longer saying: “I had cancer, I had treatments, I’m going to stay like this all my life, period.” It’s as if something unblocked and I started to believe that things can get better. So, I engaged more. (C124) | |
| 26 | I wanted to see changes, improvement in my life. So, for sure that motivated me and I got involved. When I commit to something, I do it. All my life, I don’t think it ever happened that I gave up midway. Usually when I do something, I do it. I was like: “If there’s anything I can do about it, well I’ll give it a try,” and I enrolled thinking it wouldn’t help much. (C123) | |
| 27 | Commitment takes time. If you had told me a year, that might have been something else. But twelve weeks, for me, I would have taken three more at this level. When I commit to something, I commit myself fully.…You must be disciplined. It’s like any treatment, if you do it occasionally, I don’t think the results will be there. It really must be done methodically and regularly. It’s like going to the gym. I called it: “Going to the gym but to my room.” ( | |
| 28 | I was told it’s twelve, so I said to myself: “I’m doing the twelve,” and on top of that it’s research and it can help other people as well afterwards. It’s true that I was wondering what we were going to do, but I thought: “Let’s try. It must work.” I didn’t think it was going to be so fast and so effective. (C111) | |
| 29 | When I learned of the study, I thought to myself: “My God!” I didn’t know what it was, but I was like: “If this can be good, I will go and see, out of curiosity, and if it doesn’t help, I will stop going.” The more I went there, the more it gave me something. The more I saw that it wasn’t that bad, I just kept going and at one point I said: “OK, I’m going until the end.” I saw all the improvement and all the things that I could do by myself. In the end, it didn’t matter if it was twelve or fourteen sessions; it didn’t bother me. Basically, I was aiming for the result, and I was ready to give it my all. (C100) | |
| 30 | He [my partner] had already taken several leaves to come with me to the hospital, so he couldn’t come to the sessions, but he knew…I talked about it a lot and he had seen what the exercises were because at the beginning I was having trouble with the dilator, doing the exercises myself, and he tried to help me. Anyway, he knew what it was all about, and he supported me, he was understanding. (C18) |
Quotes underlying Theme 3
| Theme | Quote no. | Quotes |
|---|---|---|
| 3. Satisfaction with the treatment and recommendations | ||
| 31 | The attitude was very courteous and warm; I was really happy with the approach. Everything was top-notch, the number of sessions versus the results you want to achieve. I felt that everything had been calculated correctly to allow progress and results. If it had been for a shorter period, it wouldn’t have been complete. The treatment provided enough results, enough to say…“OK, I am satisfied, it worked.”…Physical therapy should be part of survivorship care.…Breast reconstruction after breast cancer is covered by the hospital but costs related to “perineal reconstruction” are not. Breast reconstruction is necessary for the woman, for her life, for her to continue to live in harmony, for her vision of herself, for her esteem; yes, but “perineal reconstruction” is just as important. It’s even dangerous if nothing is done: the vagina may shrink, close up…the pain…it’s a need. This is clearly a need, but it is not automatically offered after gynecological cancer as with breast cancer. So, there is something that is not fair. (C12) | |
| 32 | The treatment met my needs, maybe more, I didn’t think I was going to appreciate it that much.…It brought me more than I thought. I didn’t think it was going to bring me so much.…It exceeded my expectations, so I’m very happy with all the treatment. And if I happen to have other problems, I think I will consult the same physical therapist because I liked her.…Ah! I am very satisfied, very, very. I recommend it. Specialists should talk to us about it. It’s up to us to decide whether we want it or not. It would be perfect if they could tell us…“If you want to go to physio, you can go, it’ll make you a lot better,” but nobody talks about it. I don’t understand, we should be told. We should be offered this treatment. I would never have thought that there were physical therapy treatments for that. They do it for any other surgery, why not for that? (C117) | |
| 33 | I had met a sex therapist at the hospital and had maybe three appointments. She gave me some information to order a dilator, but you know, I didn’t. I had to get the dilator. There was a document I didn’t understand, and I didn’t take it seriously. I was like on my own and gave up. She was giving me a recipe. I had to go, buy and follow the recipe by myself. I also felt that the sex therapist was working more on my relationship issues rather than my vagina which was painful after the surgery…So, I appreciated my experience in the study much more. If the sex therapist had referred me to physical therapy, I would have understood better. Any woman who has surgery should have the opportunity to have this treatment; when we are followed up for cancer recurrence, that should be part of the treatment automatically as well, a convalescence. (C103) | |
| 34 | In a 1000-piece puzzle, when a piece is missing, it won’t work. Physical therapists, as much as nurses, beneficiary attendants, doctors, etc., are essential in the healthcare network. I can see that this treatment was essential for me. I would have been willing to pay for it but not everyone can afford it. So, I think, in the same sense as someone with back pain, a bad knee or anything else, these physical therapy treatments are essential. It should be offered to everyone. (C123) |
Fig. 2Acceptability of multimodal PFPT treatment