ID 4250 Exploring Interactions Moving Myself

Patient recovery: Self-management

Design and Research report

By: Tommie Varekamp 1369091

1

Table of content: - Focus and initial design goal - Research goals - Research activities - Current situation (conclusion) - Direction for improvement (conclusion) - Design goal - Interaction vision - Design ideas - Directions for further research (Cycle 2) - Appendix A; interviews with medical specialists - Appendix B; interviews with patiets - Appendix C; Creative session results - Appendix D; Patient journey (A3)

pg. 2 pg. 3 pg. 3 pg. 6 pg. 8 pg. 9 pg. 10 pg. 11 pg. 12 pg. 13 pg. 21 pg. 24 pg. 26

Focus and initial design goal:

The clients Biomet and the Renier de Graaf Hospital have implemented a new Rapid Recovery program that allows patients to go home very quickly after an orthopedic surgery (in one or two days). The revalidation process of patients with a new knee or hip implant is a long process, sometimes longer the a year. This means patients have to be able to recover on their own at home and this is an important aspect in the Rapid Recovery program. During this recovery at home physiotherapy exercises are very important in order to reach a full recovery. Therefore I want to focus in my EI project on the moment when patients leave the hospital and recover further at home. And because of the high importance of physiotherapy I formulated my initial design goal as:

Create a design that will improve the communication between patients and physiotherapists of the patients subjective emotions and feelings, and moments when they are experienced.

Research goal:

I want to research how the situation and concerns of patients change when they go back to their home to recover. From these research results I want to specify opportunities for improvement. And specifically how the communication with the physiotherapist can address the concerns and new recovery situations of patients. For this I made the following Research questions: 1. What is happening in the contact moments between patients and physiotherapists/orthopedic specialists inside the hospital? 2. What kind of information do medical specialists need from patients during the contact moments in order to provide an effective treatment? (The concerns and goals of other stakeholders?) 3. What are the concerns of patients during these contact moments? 4. What are the patients experiences and concerns while in the hospital? (And how do the contact moments influence these)? 5. What are the expectations and goals of patients about the recovery period at home (before leaving the hospital)? 6. What are the needs and concerns of patients during the recovery period at home? 7. How do patient experience the recovery at home? 8. How do medical specialists help with the concerns of patients when they recover at home?

Research activities:

Interviews: To get insights in research questions 1 and 2 I have interviewed 5 medical specialists who provide the treatment to the patient after the surgery. One orthopedic surgeon, one orthopedic consultant and three physiotherapists (both inside and outside the hospital). Because these medical specialists treat a lot of different patients I also asked questions about to them about the other research questions. I conducted these interviews with my buddy and another group. The notes of these interviews can be found in appendix A For insights in research question 3, 4 and 5 I interviewed 6 patients inside the Reinier de Graaf Hospital. These interviews also functioned as a preparation for a creative session. The notes of these interviews can be found in appendix B

Creative session: To get insights in research question 7, 8 and 9 I organized a creative session with four patients. The goal of this creative session was to get insights about leaving the hospital and being at home to further recover. As preparation I had interviewed these patients in the hospital and they filled in a sensitizing booklet during the week that they went home. Three of them went home and one went to the long recovery department in the hospital. Unfortunately one patient cancelled our session because the recovery at home was not going well. It would have been very interested to know exactly why, but I agreed to call back in a month to see if we can schedule a meeting then. During the session we filled in a timeline about their week and used the booklet as a communication starter. On the timeline we placed their activities (especially exercises), their emotions during these activities and who helped them and in what way. These research activities I conducted individually. Picture of the timelines can be found in appendix C.

Data analysis:

All the interviews, session results and my personal observations were analyzed for interesting statements about the research questions. These results I gathered in a patient journey to provide overview and be able to specify possible improvements. This patient journey is a work in progress that will be updated with each further research activity. A first version of the patient journey can be seen on the next page and a larger version in appendix D The patient journey provides an overview of the phases and activities that a patient goes trough after surgery, with a description of each phase. The top half shows interesting statements by medical specialist and the lower half statements by patients. The statements by patients and medical specialist I divided in categories that are present in my research questions; concerns, experience, expectations. During the interviews it turned out that the attitude is also important and therefore added as category.
4

Current situation:

As research goal I stated to compare the situation in and outside the hospital and my research questions were focused on this. Therefore as part of my conclusion I will describe the current situation inside the hospital and the current situation at home. With a (RQ#) sign it can be seen to which research question these conclusions refer.
I have very little time for emotions, but they are important

The current situation in the hospital: (RQ2) The most important goals/concerns of the medical staff in the hospital is the emotional state of patients. The measurable physical health is of course the very first priority (making sure the patient does not die). But each medical specialist that I interviewed mentioned the emotional state of the patient as very important, even crucial to the outcome of the recovery. This emotional state is describe with the following terms: - Attitude - Confidence - Motivation - Expectations

Orthopedic surgeon

Emotions and attitude are important for early mobilization

Physiotherapist

At first it hurts really bad, but that you can stand on it is unbelievable

(RQ4) Even with pain treatment patients can still be in a lot of pain, but they have a positive attitude and show initiative in their own recovery. The patients that I interviewed were also aware of their exercises, own responsibility and discharge conditions. This further shows that the medical staff takes effort to create the right emotional state and attitude that is needed for patients to recover on their own at home.

The physiotherapist learns the exercises to me and I need to do it

Patient

(During the meetings) I coach people out of bed, without touching

(RQ1) During the meetings between physiotherapists and patients the focus is on getting the patient ready to manage their own recovery. From the interviews it became clear that physiotherapists made effort to get patients ready to do exercises on their own.

Physiotherapist 6

They (the physiotherapists) dont help but give guidance

For the Rapid Recovery they intensified the meetings between patient and physiotherapy to twice a day. I conclude that this is not done (only) to explain the exercises, but to be able to create the right emotional state and attitude so patients can manage their own recovery.

Patient

The current situation at home: (RQ5) In the hospital the patients are really positive about the expected improvements to their lives. This positive attitude can also be seen in their expectations towards the recovery at home. The patients I interviewed were expecting that the recovery at was going to be painful, but that every day it will go a little bit better. When asked what they were looking forward to they did not mention a lot of physical activities, but mostly the fact of just being in their own homes.

I will have to practice a lot

I want to push myself through it, also with pain

Patient

(RQ6) Between the patients that I interviewed it differed how important they considered it to consult a physiotherapist directly after the hospital.
A physiotherapist is very important

One patient knew the recovery process and therefore thought that a physiotherapist was not needed immediately, but other patients mentioned this as very important. It is standard to have a physiotherapist visit you at home 2 times a week at first. This intensity is then build down depending on the progress. But to arrange this is the responsibility of the patient self.

Patient

I was afraid that the hip would dislocate

(RQ6) The patients did not express a lot of insecurities or doubts about their recovery process at home. But these patients had already experience with recovering from an orthopedic surgery and therefore knew what to expect. This was not the same the first time they experienced the recovery and then patient were more insecure about what they could do and what not.
7

Patient

You have to push over your limits, every time a bit further You are going to do too much, if your pain gets lower

(RQ 7) All patients that participated in the creative session mentioned that they progressed through their recovery step by step. Patients did mention several times that they sometimes felt that they had done too much. Sometimes they experienced more pain then they expected, but they expressed that knew they had to push through this.

Patient

The most challenging part in any moment of the meeting is to make the patient feel motivated

(RQ 8) Also outside the hospital the focus of the physiotherapists is on the emotional state of the patient. The two physiotherapists that I interviewed called this self-management. This is really important because the patient ha to do most of the recovery individually, when no physiotherapist is around For this self-management the physiotherapists mentioned the following terms that largely overlap with those inside the hospital: - Being confident (but not over confident) - Motivation - Personal goals - Having realistic expectations The physiotherapists mention that they have an important role in helping the patients with this self-management and the important conditions for this. They also mention that they do not have specific tools for this.

Physiotherapist

I look if they are too willing and trying too hard using their new prosthesis.

Physiotherapist

Main opportunity for improvement:

The physiotherapists in and outside the hospital mention the self-management of patients as a crucial factor in the recovery process. From their description this looks like a good design opportunity. The patients in the creative session on the other hand did not mention problems with their selfmanagement. I think there are several reasons for this. It might be in the Dutch culture to hide the negative facts about their recovery (in Dutch: Je niet aanstellen). Some patients also mentioned that they have this characteristic. The fact that there were family members present during the session might have strengthened this characteristic. And the patients that participated in the creative session at home all had previous experiences with the recovery. Either from an operation on an other joint or from the recovery of their wife.
8

It is are the medical specialists (in and outside the hospital) that convinced me that this is an important topic that can be improved. In the second cycle I can do more user research with first time patients and from these more experienced patients I can also take positive points about their recovery into the second cycle. Therefore I do choose the improvement of self-management as direction.

Design goal:

For this new direction I made a new design goal that focuses on patient at the home and the physiotherapist that visits the patient at home.

Create a design that can be used by the physiotherapist to increase the self-management of the patient and will continue to have an effect when the physiotherapist has left.
Important factors: Confidence Motivation Expectations Goals

Interaction vision:

I want patients to feel the satisfaction of each next small step in their recovery process and make them feel proud about these achievements. For this patients have to test their limits in a conscious because that will make them feel in control.

I know I can do it

Interaction qualities: - Feeling the satisfaction of getting further - With each step testing your limits in a conscious way. - Being proud - Being in control

10

Design ideas:

Inspired by the research findings and the research activities themselves I sketched down several quick ideas. In the second phase I will work out these ideas into a state that they can be shown to users and the medical specialists, but to get an idea of possible directions I explained two of these ideas in more detail below. Wall of fame is an idea to increase the motivation of patients. At this moment discussing the progress of the recovery with the physiotherapy is done verbally and by filling in questionnaires. With a recording device it becomes possible for the patient to show their progress in a visual way. In this way the patient can show the physiotherapist achievements that they are proud of. The visual elements also stay with the patient when the physiotherapist leaves and then function as a reminder of their achievements. For example a picture of when they were able to walk to the park. Now the recording device can take pictures, but this could also be audio memos or something physical. And the content could also be shared with more people then only the physiotherapist.

Can I stand on my leg is an early idea to increase the confidence of patients. A sensor pad in the shoe of the patient can give feedback if the leg (and therefore the joint) is used too much during the recovery. Technically this can be done by measuring size or duration of impact or the duration of use without rest. The feedback can be communicated to the patient with for example a buzzer, vibration or even a text message to a mobile phone. This feedback can be used to make the patient conscious of the importance of small rests during the day. Or it can be used to warn patients of over using their joints when they start to do more physical activities like sport. The feedback could also be used in communication with the physiotherapist to evaluate the progress since the last meeting, too see for example if the patient has used his leg more intensively.
11

Directions for further research:

The first research activities also largely depended on what was possible to arrange. For the second cycle I have already the contact that I need and therefore it is possible to specify more on my design goal. Observation of physiotherapy meetings outside the hospital: This was not possible until now because the physiotherapist we contacted outside the hospital were still looking for suitable patients. The goal of this research activity is to get more insights in the situation and interaction of my design goal. Focus group with physiotherapists about self-management: With the goal of getting more insights how they currently support the self-management of patients. Secondly I want to co create design ideas with them or let them reflect on design ideas that I have developed before the session Interview / context mapping with patients about self-management: In the second cycle I want to focus on patients that experience the recovery process for the first time. In the context mapping session I also want to focus more on the self-management of the recovery process at home and the communication with physiotherapists.

Thank you for your interest. For suggestion, questions or other comments please contact me: Tommie Varekamp MSc student, Design for Interaction, TU Delft 06-36153942 tommievarekamp@gmail.com

12

Appendix A; interviews with medical specialists:

Interview Erik Righarts Physiotherapist at the Reinier de Graaf Hosptital 10-10-2012 Most important points: - Less medication made early mobilization possible Makes leaving hospital in 1 or 2 days possible. o Very important for mobilization are: Attitude, Emotion, Confidence, Energy (from food) o Older and lonely patient sometimes do not leave hospital that soon Main reason are: afraid to go home and no confidence - - A typical meeting at the hospital after surgery: o Read doctors statement about the surgery o Ask the nurses how the patient is o Explain exercises in bed o Coaching patient out of bed (preferably without touching the patient) Movement is the same after surgery o Physiotherapist got no complains about that o Sometimes feels like muscle pain (spierpijn)

- Goal of physiotherapist at hospital are the discharge conditions o Mobilize, Getting in/out a chair, Getting in/out of bed, Walk 30 m, Climb the stairs Everything in a save way, physiotherapist checks this by Observation Do they pick it up remember it correctly And are able to practice at home o Important for discharge conditions are pain and emotions Pain is measured by a scale and the pain treatment depends on this measur ing Pain is subjective Pain depends a lot on the emotions Physiotherapist judges pain by what they say and do - - Important for early mobilization is: o Attitude o Emotion o Confidence o Energy Goal of physiotherapist at home is: o Making daily activities possible (like walking) o Remove limping and other abnormalities o Then going to more advances things like sport

- There is sometimes a mismatch between physiotherapists inside and outside the hospital. o There are no guidelines for the physiotherapy recovery. o It is a simple revalidation use your common sense o Some physiotherapists (outside the hospital) give too heavy/wrong exercises Maybe because lack of experience or being not up to date o RdGG gives patients guidelines that also explain what things they should not do. - Mentioned as improvement: how patients are after they leave the hospital o Directly after they leave and when/if fully recovered o They only make a note for the physiotherapist outside the hospital o You have to see your patients o Important for improving Rapid Recovery

13

Interview Stephan Vehmeijer Orthopedic surgeon at the Reinier de Graaf Hosptital 10-10-2012 Most important points: - Really interested in a patient journey describing their new Rapid Recovery o What could we improve even more

- Only very short meetings with patients o I do not want patients to come to me with emotions because I don not have the time I have no more time all you need is time 1 time before surgery, 5 min. 2 times after surgery, 1 or 2 min. 1 time after 6 weeks, 10 min. Other meetings are done by a orthopedic consult (a specialized nurse) - Contact moments are short but emotional state of patients is important o Results will improve with a good emotional state o 95 percent of their emotional state I get o It is a gut feeling o No standard questions or actions to help understand the patients emotional state

- If the emotional state of the patient is bad no surgery o Because pain treatment is an alternative option o Because everything can go right (medically and technically), but still patient can not be pleased with the results Why is unclear 20% of patients is not happy with results o Therefore Who to operate and who not and how to chose correct treatment. - A typical check up meeting with surgeon (that lasts 10 min.) o Look at X-ray photos o Check if joint functions right The surgeon moves the limbs to check the joint o Ask standard questions (for the SF12) o Ask how is it going last - Patients preparation of the check up meetings can be improved o So patients know what to discus in the meetings o So patients have the right expectations of their recovery Even better if this can match the expectations they have from the result of the surgery (can I sport again) o During check up meetings the SF12 outcome measure is used This is done before and after surgery and compared Interview Thea van Houdt - Orthopedic consultant at the Reinier de Graaf Hosptital 19-10-2012 Transcript (Made by Lotte Jacobse): Before 1. How many times do you see a patient before the surgery? What happens during these meetings? What is the most important point (moment) in a meeting with patient? Three times, as consulant. 1. Informing consult (45 minuits) After the diagnose they have to fill in forms, their hart function is tested and they visit the anesthetist. And then they visit Nicole (college) or herself. They talk about the trail before the operation, the operation itself, what happens in the hospital and the trail afterwards. What kind of help do they need afterwards is very important. We also try to estimate whether the patient is undervaluing the situation. Then I try to ensure them this is a intensive surgery. But I have to be careful because I dont want to scare them to much. We show the artificial joint and explain the treatment. Sometimes the patient dont want to know, or even faint 14

 2. 3.

in the worst cases. The doctor decided the kind of prosthesis, but there are two kinds of surgeries. They can choose a specialist who are accomplishing one of these (Vorsten approach (new), or side approach (old)) Vorsten: leg is opened on the front side. This way the muscles do not need to cut but they are stretched. This is a relatively new approach and not all the specialists are working according this method. Side approach: the leg is cut open on the side. The muscles need to be cut through which makes the recovery take longer. We also discuss the products that can help them during the recovery. (toilet lifter, shower chair etc.) One week before the surgery. Try to estimate whether the patient needs extra care. This can be when the patient has no husband/wife who is capable to give the care they need during the first weeks at home. We also check if they arranged the physiotherapy after the surgery. The first two weeks the physiotherapist needs to come to their houses and they need to note that. Sometimes we discover that they did not arrange that yet. We also inform then again about what they can not do after the surgery: no cycling, no swimming, no driving etc. Not bend in a smaller angle than 90 degrees. Two weeks after the surgery Wound control, how they are doing (you can see how they walk into the control room), if the surgery was ok. If the wound does not look good, the doctor will come and check. Then I remove the stitches and I explain what I am doing. Then I ask if they have an appointment with the doctor 4 weeks later. We check the pain level by asking them. Sometimes we ask a little more about what they are doing. Sometimes it turns out that they try to hard. They are pushing their recovery to hard.

2. What kind of questions do the patients ask about the surgery? What are their expectations of the surgery? Mostly what will happen after the surgery. How they have to deal with their temporary limitations at home. Than I ask for their personal situation, how they live and with whom. The partner needs to be able to help the patient. Then maybe someone from homecare can help him/her at home. When they talk about the recovery, they are mostly informed about the first weeks. They do tell about the check up points during the first year. The people who work also ask how long they will be out of the running, because of responsibilities at work. We also try to prevent that patients go to work to fast. 3.What are the steps of preparing the patients for joint replacement surgery? (physically/mentally/emotionally) Testing their physical state (hart monitoring), informing (booklet), informing (consult), informing (group meeting), check up one week before surgery. 4.How do you help them deal with the emotions, stress and anxiety involved with joint replacement surgery and be comfortable with it? Patients sometimes show fear, doubt things like that. Try to comfort the patient, tell them that they can always call with questions etc. Sometimes they are in tears, then I wait and listen to what they say. I try to get the problem concrete and that is not always the surgery. It can also be the fear of going home. Then i try to explain the options. It can also be the partner who can not take care for the patient. 5.How does Patient express its physical/emotional state during meetings? How does a doctor register and monitor the progress Patients physical/emotional state? We do not use a tool to messure this during the meetings. That is mostly an intuition whether their state it. Physically, the fysio therapist will check that. Emotionally, we mostly notice during the meetings. After the second meeting we fill in a form together with the patient (one week before surgery) about allergies, medications, things like that. We also messure a possible difference in the length of the legs. Also the patient gets the possibility to donate the part of the bone that will be removed. After the 6 week check up with doctor the oxford and society score is filled in. After the last meeting also a digital form is filled in about their physical state. 6.What objects/tools are involved in this Patient-doctor Communication during meetings? 15

No they do that upstairs at the nursing places. We only ask them if they have to much pain. And then try to discover why. (after the surgery) 7.What part of the (recovery) meetings could be improved, in order to optimize the outcomes? If you could change something in the hospital that would make your patients feel better, what would it be? Sometimes we discover that the patient is not taking their medicins correctly. For example they think they take to much medecins and rather have more pain. But this can influence the recovery process and most of the time they do not realize that. For me it is hard to check this, they sometimes lie about this. 8. How do you involve the patients family in the whole process? Most of the time the patient comes with family members of friends. Can be very amusing. Sometimes the patient comes alone and then I sometimes think, help i hope he/she turnes out to be ok. Then I sometimes notice that they did not read the booklet and i doubt that they understood everything correctly. I try to note that to the transfeur nurse, but their are demands for giving extra care and most of the time they are not suiting these demands. We do not reflect on this to the doctors. The people are choosing to be operated, it is also their responsibility. 9. How do you think the patient can be helped to feel confident and trusted before the surgery? If patients keep saying they can not do it, I try to confirm that they can do more than they think. Extra notes: We have contact with home care for special patients. Personalizing the information for patients seems unrealizable. After 9.How much time do you see a patient after the surgery? And do you see the same patients inside the hospital (shortly after surgery) and later outside for check-ups? After two weeks. And I am a top nurse who only does the consulting meetings and not the care directly after the surgery. We see the patient only at the three check up meetings I mentioned earlier. 10. What happens during the check-up meetings (different steps) ? (mentioned earlier) after the surgery there is one check up and then the wound is nurtured. The stitches are removed and the wound is bandaged. They ask if the patient feel to much pain and if they are not forcing the recovery by doing to much exercises. 11. What is the goal of the check-up meetings? - How is measured/decided if this goal is achieved or what the progress is? (discussed earlier) 12. How do patients explain how they feel emotionally (frustrated/angry/confident)? - Is it important for the orthopedic consultant to know how the patient is feeling? - Why (not)? Yes that is important and we try to discover that by asking them questions. Most of the time they tell that themselves, they tell whether the surgery turned out better or worse then they thought. They can note their feelings in a questionnaire afterwards and we are really looking into the outcomes of that. If a patient is very upset, they will be called after a few days to check how he/she is doing. Sometimes a patient acts angry or unfriendly. Then I try to discover why they act this way. Mostly I ask if they are afraid. And then they brake and tell they are indeed afraid. And then I try to help them explain the things they are afraid for. 13. What is asked by the orthopedic consultant about the recovery process at home? (discusses earlier) 14. Is the physiotherapy treatment (after the hospital) discussed in a check-up meeting? Yes, but mostly the fact that they need to arrange that themselves. I always ask if their exercises are going well. Not of they are doing the exercises, that might make them feel inspected. 15. What is the concern that patient mention the most during check-up meetings? The pain and if the surgery/recovery turned out to be harder then they thought, they will mention it for sure. They also check whether they are recovering as they should and if they are doing the exercises correctly. They ask for confirmation. 16

If we think the wound looks nice. 16. Is an orthopedic consultant also coaching the patient (physically/mentally) during a check-up meeting? We mostly inform and check how the patient is doing. We coach them verbally. We try to find out if they are doing they excercises correctly.

Interview Pepijn Rothfusz - Psychosomatic Physiotherapist at Fysiotherapie Delft 19-10-2012 Tarnscript (Made by Andriy Yasynetskyy) - As a Psychosomatic Physiotherapist I look not only in a physical part, but also in a motivation (the coping style) of the patients during recovery. I look if they are too willing and trying too hard using their new prosthesis, or there are people who feel afraid to exercise and use the new prosthesis. - So, Im trying to find a right balance for them. I think patients do benefit with people (therapist) who look not only in a physical part, but also in their psychological conditions. - If patient contact our clinic and come here I see him/her in my room, I explain the procedure about what were going to do, and after the general questions I do a physical examination. After that, we make the goals together. Thats a very important moment, because I want absolutely to know what kind of functions / activities that patient wants to perform. Here you can observe a very big difference between people (eg. 80 years old woman and 50 years old man, who is still working and wants to have an active life and practice some sport). - It really changes the way youre approaching the recovery period. It depends on their condition and their ambitions, the use they want to make of their body. Somebody can be sportier like and somebody is very happy playing chess. That can be a difference. So, I need to get a good idea about the use they want to make with the new joints. - During the physical exam I dont have standard form I follow. The protocol is in my head and f there is some thing interesting Ill wright it down in the computer. We use EPD - Electronic Patient Dossier, RPS form (Rehabilitation Problem-Solving Form (RPS-Form), which allows health care professionals analyze patient problems, to focus on specific targets, and to relate the salient disabilities to relevant and modifiable variables. In particular, the RPS-Form was designed to address the patients perspectives and enhance their participation in the decision-making process. Because the RPS-Form is based on the International Classification of Functioning, Disability, and Health (ICF) Model of Functioning and Disability, it could provide a common language for the description of human functioning and therefore facilitates multidisciplinary responsibility and coordination of interventions. The use of the RPS-Form in clinical practice is demonstrated by presenting an application case of a patient with a chronic pain syndrome). - RPS is related to ICF form, it looks at the physical problems, function, and participation in life. So, here in the RPS form you have anatomical part, this part is according to the patient and this one is according to the therapist. I ask him is if has pain and I fill in on my observations- I use this psychometric tool for measuring pain, the Visual Analog Scale - VAS (from the most pain they expire to the no pain), and after I turn it around and see the corresponding number in scale 0-10. So, they dont se the scale! This turns out to be a good tool to measure pain, which is very subjective tool. On the emotional side we can see how they experience pain. Its very easy to use; maybe it could be more precise. - Its used from the physical part (if its red, painful, swollen, can you bend your knee), and then we go to the activities (can you walk, lie down, turn over) and after the daily participation (work, house duties). So, every health issue is split out in these forms. - So, the therapist especially Psychosomatic Physiotherapist has to look at the reaction or interactions between these fields. And we include the personal factor (somebody is avoiding form nature and other are more perceiving in nature). Then you have environmental factors, like somebody leaves in the house with a lot of stairs. So, this is the basic form I work with. - My definition of how much time I need to meet the patient depends on the patients goals, on motivation and progress. Its very relative. There is no any average number. If the patient doesnt want to use his body, there is no point to have a very long treatment. Normally, the patient 60+ with new hip starts twice a week, in order to get a strength, mobility and coordination. The evaluation is based partly on my education and my experience. Its not a 17

money issue, because everybody in the NL is covered by insurance and they can do physiotherapy during 1 year for free. - So twice a week is a common procedure, otherwise there is no progress. I need to make it with a bit overload, in order to achieve some progress in a patients recovery. Of course, I do it carefully (especially the bending), but the chance to damage the new joint is low, because the new joints nowadays are cemented. But, to desolate the joint is possible if you do it without knowledge. In my practice Ive never observed any dislocation here in our clinic. I know it happens in principle, but it didnt happen with me in this clinic. Maybe Im lucky :) - The most of the time my 1st contact with patients is in their home, right after they are discharged from the hospital. The patients get in touch with a clinic, not the hospital. So, they dont wait for 2-3 months and then contact us. - So, normally I have to go to their homes, where they are still in the bed (3 days after surgery) with a lot of pain. And I have to mobilize them from the bed. They are discharged from the hospital if they can go alone to the toilet, or somebody in the house can take care of them and to give them their 1st needs. Do, I come to help them in a very early stage of recovery. - Do you have any kind of contact with a hospital then? There should be a kind of contact, but there is not (even with the Orthopedic Department). They have their old procedure. They know we exist, we know they exist. We can wright letters to each other. If there is something goes wrong with a patient, then we contact them by phone. In the NL we have ZorgPaden (Care Path) where the patient can look at and see what he/she needs to do for the joint replacement. Mostly the patients have to contact us. They get a form from the hospital (1 from the surgeon and 1 from their physiotherapist). The surgeon states the type of the surgery and the general diagnosis (only in 1-2 phrases), with no specific details about the patient. It is very limited, and they in the hospital assume that we physiotherapist know exactly what we have to do. The physiotherapist form the hospital has also a standard form where he fills in that the patients can walk to the toilet, or to climb the stairs. Thats all I get. Thats the way its done for many years. - It only gives a very limited info about the patient and its capabilities, but nothing specific (its like the right hip was replaced, please mobilize the patient - something like that). If the patient was operated from the front, I need to be very careful because of the nerve. It is not personalized; it gives me a very limited idea. It should have more specific information about the patient and his/her limitations. Its too basic. - During the meeting I need to push a little bit, because of overload principle (no pain, no gain). I think I can feel this limit. I know the degrees in which they can move their joints. They need to gain the mobility as soon as possible, so I have to push a bit further, but not too much. And some people experience a little pain; other people experience too much pain. If they have to much pain, you can see it very easily on their face. You can feel it on their breathing pattern. They also get tense and defensive. - I also have a patient who avoids a pain, it depends on the person. Its not cultural. I have Dutch patients who avoid pain and those who have more tolerance. - The most challenging part in any moment of the meeting is to make the patient feel motivated. Its about to make them motivated in the beginning, if there is a lack of motivation and to keep this motivation alive. - They have to exercise regularly and in a right way. I see them twice a week, but they have to exercise every few hours. The key point for me is they understand it and they follow those instructions. And, then I have to look at their personal issues. If they really understand me and they are willing to do what I tell them. Thats very important for me. - How do you measure and monitor the patients progress? I use the Goniometer to measure the angle of the flexion. I can measure the mobility with it. I always take notes when Im back the clinic after the meeting (if its in patients home). After each session I fill in the results and data in the EPD file, and to fill in in the journal. The journal follows the principle of their objective evaluation plan. I have this program in my PC and I always have to fill it in. - I always try to make the meetings here in clinic (instead of patients home), because here I have more possibilities to provide them the right exercises (like to walk on a treadmill, to exercise on a stationary bike etc.). - I can see the patients progress in this program. Its only possible to visualize 3 aspects as a graph. The data I have to fill in after each session includes 3 variables. These are: VAS number (pain), the angle (flexture) and PSK (functional scale: going to the toilet, walking, bending, sitting or having sex). Then the program can visualize the progress of these 3 aspects in 3 separated graphs. I cant show you the examples, because of privacy issues. You see the timeline and the different measurements in time. And then I can have some idea about the progress in 18

general and what I need to focus on to provide a better treatment. - When the patients go home I give them a paper with a set of exercises and how to do them. When they come back to the meeting I ask them if it went well. There are forms they have to fill in at home about how they did the exercises. Sometimes I dont use them (forms) because some patient take it as an offense. They say Im not a little child. But the patients who do fill in the forms, sometimes they say I did the exercises, but I can feel that they did not. I can see these kinds of people. They dont cheat me, they just cheat themselves. - I think what can be improved is the communication between the surgeon and the physiotherapist (out of the hospital). It means not only in a basic form (improving the diagnosis report), but make it more personalized, in order to give a better idea about the patient (there are other particularities or other health issues as well). The whole process culled be improved. Were as we call the 1st line healthcare in the NL, and hospitals are the 2nd line. - We have a system with all 1st line healthcare providers, and if I have a question I can send e-mail through the ZorgMail to other providers (therapists). I can wright e-mail to every physician in a 1st line system. It is a kind of network. Thats very easy to communicate through that system. - So, thats the problem. We can only use it in a 1st line, but we cant use it towards the 2nd line (to communicate with hospitals directly). We dont have a secure line with a surgeon. They (doctors) live in an ivory tower and they communicate between them. Thats very old school and I think the communication nowadays should be more 2.0 (more contemporary). Especially considering the technological possibilities nowadays. - For example, I have this EPD file and I cant send it to the hospital. OUR SYSTEM DONT COMMUNICATE WITH THEIR SYSTEM. They (in the hospital) communicate with doctors upstairs. For us its a waist of time, a waist of energy. And, there can be errors on it. So, if I need to clarify something about the patient I would like to get in touch with his/her surgeon or therapist. But, its mostly important to be connected with their surgeon. - If there is a complication in their recovery, I need to contact the surgeon. Interview Marc Okkerse, Physiotherapist at Fysiotherapie Delft 22-10-2012 Most important notes: First meetiong: - Note from doctor & physio on first meeting o What can the patient do? - What is the status of the patient (a functional health profile) o Goals o Pain - Physical tests - Question lists (example Harris knee lists) - Start of treatment (begin is the same on most cases) Tools for motivation: - Motivational interviewing o Ask how they think about their recovery - Knowledge transformation o Also to make expectations realistic - To create trust o Let patient experience exercises with physio nearby Some goals are standard for all recoveries: - Way to get there differs a lot o Sometimes pressure, other times little step by step Physio can see what method will work Also part gut-feeling And questionairs Length/way of treatment depends on: - Self management o Then they control their own recovery - Patient can be both not confident enough and over confident o So self management in both direction is needed 19

We look at the patients variables - That is our job as physiotherapists Tools during meetings: - Gonio meter (for measuring flexture) - Abacus, the software program used) o Also used to show progress to patients Flexture Pain Progress in activities like walking o Two pain scales ( Numerical 1-10 Physical scale (1-100) called VAS Hold backs/ pit falls (during recovery) - Unrealistic expectations - Not trusting your body - Not trusting you new, leg, knee, etc. - Pain - Psychology (depressed) o This depends also on other hold backs Physio trust - Depends largely on the physio itself, but tools to improve this are always good Kind of exercises: - In the begin short and often (both functional and not functional) - Later more longer durations, but depends on goals - Later more functional - Physio has ways to check if patient did their exercises o They are based on asking questions Main patient concerns: - Will I ever be without pain? - Will I ever be able to do the things I want to do? - Also financial motivation can drive the recovery (even too fast) - Depends largely on the self motivation

20

Appendix B; interviews with patients:

Interview with patient 1 Was about to leave the hospital one day after surgery 10-10-2012 Most important points: - - Both her hips have been replaced both in same hospital and with Rapid Recovery method o From the previous time she knew what to expect o My conditions are much better this time so I hope I will also recover faster at home Most difficult points in hospital: o First time I had to wait a long time at the hospital before the surgery o The total narcosis was scary the first time

- Best points in hospital: o The moment I woke up (still in the operating room) and the surgeon (S. Vehmeijer) was next to me. He was very happy because it was a good surgery so I was also very happy. - - Good point: After hospital the physiotherapist will come to my home 2 times (if needed more). o After that she will go to the physiotherapy practice Bad point: She had to use medicine (with a syringe) for 6 weeks o She reacted very bad on this medicine, lost a lot of weight and looked very pale. o I thought this is going very bad

Interview with patient 2 Was in the hospital 1 day after hospital 12-10-2012 Most important points: - - - - - - - - Has half a knee implant. Because of this she had a morphine pump. o She reacted badly on the morphine and felt sick because of it Physiotherapists determine the state of patients themselves, but will also ask about it. o He saw that I was pale and sweating o I told him I was very ill The patient is aware of what exercises she has to do o I have to do all this (points at the form with exercises) The patient has a feeling of responsibility of her own recovery o He (the physiotherapist) learns it to me and I need to do it o It is my own responsibility The patient knows she needs to work for her recovery o I have to practice a lot The patient had expectations about her recovery o I am disappointed in myself. I didnt expect to be in this condition The patient also has expectations about the revalidation at home o Pain is expected when she goes home o And she knows that she needs to do a lot of exercises The patients does not know which physiotherapist will help her during the recovery

21

Interview with patient 3 Was in the hospital 1 day after hospital 12-10-2012 Most important points: - Whole knee transplant

- Observation: The patient is positive and positively surprised about the operation o That it is possible that we can be helped with this (joint problems) o I cannot comprehend that this can be healed, that I can walk again. I could not walk anymore, it is wonderful that this is possible o Dat is toch prachtig (Dutch expression) - She was really positive about the information she got before the operation o Extremely good o From the phase before the surgery to the end of the operation o Also I did not see of it (the surgery) as a problem anymore

- 6 hours after the surgery she was standing on her legs again. o Her muscles did hurt because she had not really used them for a long time (because she used crutches before the surgery) o It did still hurt, but I could stand! o At first it hurts really bad, but that you can stand on it is unbelievable - The patient has scored her pain level 5 times after her surgery o They do that adapt the medication on this (pain level) o When asked for other feelings: Only a bit nauseous, but that is because of the medicines

- The patient is going to the recovery unit inside the hospital and not immediately to home after revalidation op the nursing department. o Because she has more physical complains (bad back) o And because her husband passed away (he helped her with moving) and therefore she is alone at home - - - A second physiotherapist asked more questions about the longer recovery o Called transfer specialist o Made the decision to let the patient stay for a longer period at the recovery unit Motivation of the physiotherapist o Helping me get out of bed, because I have a bad back o I got really good support, also before the operation Expectation for next weeks: o Everyday a bit better o And pushing through it, also with pain o I expect to be in the recovery unit for one/two weeks o No complaining, but pushing through

Interview with patient 4 Was in the hospital 1 day after hospital 12-10-2012 Most important points: - - - - 22 Knee transplantation? The patient as not very stressed for this operation because his wife had a knee replacement in the same hos pital earlier o But still there is a bit of stress before the surgery o Because of a burn out he experienced this stress in physical muscle aches When the support stockings were removed that morning the blood circulation really started up again. The first physiotherapist exercises consisted of the following o Getting cloths on o Getting out of bed on his own

 o o - - -

Physiotherapist explains details and tips Walked around Sometimes I stopped for a bit because of the pain The physiotherapist asked the normal questions About pain? (Pain is subjective) If I was tired? How it is going?

The patients knows the discharge conditions The patients is looking forward to doing small jobs at home o I want to continue on the model trains I have o Other little things to do The expectations for the recovery: o I hope that I can quickly walk normal and quickly ride my bike again o After 4 weeks I might start physiotherapy Because they can not do massages yet Because they can only give corrections on movement o During the revalidation no rest, because you need to work for it, but it feels not nice

23

Appendix C; Creative session results

24

25

Patient journey
Stakeholders:
Concern: I have very little time for emotions, but they are important My goal: That patients can practise at home Concern: Emotion and attitude are Important for early mobilisation. My goal: Create confident but no over confident patients My goal: Make the patient feel motivated and keep this motivation alive. Experience: It is motivating to show the patients process Concern: What are the goals of the patient? Experience: Sometimes it turns out that they try to hard.

Orthopedic surgeon Orthopedic consutent Hospital physioterapist Physioterapist

Phases:

The operation

Going home

Physiotherapy meetings

Check up meeting

1 or 2 days in the hospital

Recovering at home

Patients concerns:
Experience: At first it hurts really bad, but that you can stand on it is unbelievable Experience: They (physiotherapists) dont help but give guidance Expectation: I will have to practice a lot Expectation: I want to push myself through it, also with pain

Attitude: You have to push over your limits, everytime a bit further Concern: I was afraid that the hip would dislocate

Experience: I felt that I did too much for a while

Attitude: It feels good to be able to take care of yourself

ID 4250 EI - Patient recovery: Self-management - Tommie Varekamp - 1369091