Experience dimensions
Results from lexicometric analysis provide an overall view of the corpus and enable the identification of the experience’s most relevant dimensions. The data highlights the importance of the temporal dimension with 2872 semantically equivalent words such as "time", "weeks", "months", "years". Patients also use precise dates to describe the events ("on September 5th"). This is consistent with the nature of the disease that requires care and treatment over time. In contrast, the spatial dimension emerges less from the corpus with only 187 semantically equivalent words (place, region, next to). The spatial dimension includes two sub-dimensions: the geographical (next to me) and the symbolic (my horizon darkens ...). The emotional dimension is the third category revealed by data (1254 of semantically equivalent words). It covers positive words (trust, hope, smile, happiness), but also negative words (sadness, anxiety, panic, fear, worries, fears, grief, pain, shame, humiliation, anxiety, fear, etc.). Social and cognitive dimensions of experience were also highly expressed by patients. For the social dimension, words refer especially to the “family” (394 of semantically equivalent words) and "relatives" (119 of semantically equivalent words). The cognitive dimension is recognizable with words such as "know" (357), “understand” (148) and “ask” (107). The behavioural dimension refers to the action with the use of verbs such as "do" (744), "find" (168), and "try" (80).
These dimensions are present all over the patient pathway through each touch point.
Patient pathway
One on the main issues of the research is to identify the healthcare process: the stages followed over time and the environment (physical and virtual) frequented by the patients before, during and after treatment(s). Patient pathway is not only addressed from a medical perspective but also throughout the care pathway experienced by patients when living the situation and confronting the disease. The content analysis shows three main stages:
The discovery stage. The announcement of the disease is closely related to the emotional dimension of the experience. Patients use words and terms like "shock" (49), "blow of the club" (2), "tsunami" (4). Also, they perceive the announcement generally as "brutal” (3), "terrible" (12) and "a source of anguish" (24), "anxiety" (6), "chaos" (1) and "fear" (195).
Results from the thematic analysis show that the discovery stage is a particularly sensitive phase regarding the patient / physician relationship. This stage constitutes a first phase of anxiety (see Figure 1). The misunderstanding of the disease on one hand and the relational difficulties with the doctors on the other hand are sensitive and challenging points of attention:
"On September 5th a biopsy, on the 10th the lab sends the results to the radiologist, the 17th having no news, I call the office of the radiologist, the secretary tells me there was a problem with the mail, in fact they had not sent anything. I call my General Practitioner, he asks for a copy of the report at the lab .... The next day I receive the radiologist's mail which puts "doubtful cells" and "I insist that you contact your doctor”. I remind my doctor, it's September 18 and he says it's a cancer. Great phone call! It's Friday. The weekend will be great. On Monday he told me just carcinoma no more details";
"I see a pit-bull comes out that bears the name of a radiologist who shouts at me saying that a breast like that was not normal etc. etc. He tells me: madam, you have breast cancer, the sky falls on my head. ";
"It’s like a nightmare since Tuesday".
INSERT FIGURE 1 HERE
At this stage, all the patients adopt the same attitude of shock and misunderstanding. The announcement of the disease is followed by an intensive request for information about the different treatments, the meaning of the medical terms and the cure rates. Patients use online discussion forums to find the information they lack. Online communities also help them to supplement the explanations provided by the doctors, usually perceived as insufficient. They want to feel supported and especially reassured by patients who have experienced similar experiences:
"I feel like I'm on a path where many women may be walking at different stages but I'm not the only one on the road.";
"If I can have opinions of people in the same case as me.".
At this stage, we identified two types of touch points that should be of great interest to the healthcare service providers: informational touch points and emotional touch points.
The examination stage. This stage is characterized by the word “examination” (125). Patients feel a strong anxiety about the types of examination and the results, as well as the treatments and their effects. The analysis reveals more technical content on:
- the nature of the examinations and the interpretation of the results:
"Anatomic-pathology, also called pathological anatomy, is the medical discipline forming part of the study of diseases. It studies the lesions and structural changes of organs and tissues, caused by a disease ";
"Your tumour is less than 2cm, it is operable immediately, pet-scan is ok and no lymphadenopathy echo".
"Bcc: infiltrating ductal carcinoma (3 3 2 = high grade), and proliferative marker (ki 67 to 80% = very high rate of the mitotic index). The very high ki67 means that the tumour is very aggressive. As for the "sarco…" contingent, normally unknown to the "battalion" of the tumour cells of the breast, I think that these are the cells that are very undifferentiated (the normal cells of the breast are differentiated) Triple-negative breast cancer".
- the treatments and their effects:
"It may be your Ki67 that explains the chemo (" E.C. and 3 Taxotere) compared to mine (3 F.E.C. and 3 Taxotere); "Nausea insomnia and morale at half-mast for 4 days after the 4th injection of granocytes. The oncologist prescribed 7 injections as of d + 6 ";
"The oral chemo protocol is the following: Endoxan 50 mg tablet 1tbd[1] / day + methotrexate 2.5 mg 1 tbd morning - Monday, Thursday 1 tbd morning and evening + herceptin IV I started on October 14, 2015 and I confess that it is hmm hmm not top. Side effects: headache (==> CEREBRAL MRI), pain in jaw and teeth, sinus in the face, fatigue ++++, joint pain everywhere (cervical, shoulder, back, pelvis, elbow, wrists ...) and nausea ++++".
Patients also seek evidence to trust the healthcare providers involved in their care ("Your priority is to choose the right hospital and the right caregivers.")
At this stage, patients express their needs particularly for informational touch points.
The follow-up and survivorship stage. Lexicometric analysis shows a dominance for the word “check-up” (102) associated with medical examinations such as: "mammography", "radiography", "ultrasound", "assessment", "The anxiety of the biannual check-up after breast cancer", "from one centre to another the check-up protocols are very variable", "one really has the impression of a two-speed follow-up, "from one centre to the other the follow-up is sometimes the minimum union", "I for the follow-up level I confess that I do not understand everything".
Thematic analysis demonstrates the need for patients to assess the quality of the follow-up and the importance of the performed tests just after the treatments:
"At the end of the treatment, I had no radiological examination to confirm that the treatment had worked or not. Then I did it out of my own pocket. I asked my onco gyneacologist to give me a prescription .... at my expense but at least I was reassured. The results were good. My oncologist was surely right to wait 6 months but one more exam is good for morale ... ";
"I had my appointment with the oncologist and I asked him the question of follow-up after treatments ... and he confirmed that mammo + echo check-up after 6 months after stopping the rays. "It is long", I told him and he told me that it was the protocols ... I told him that I would never be able to wait for 6 months, to resume my activity without knowing if all the treatments were effective ... and he said "we will see at that time! " Since I will be under Herceptin for one year (HER +++), he told me that I was covered (except that I have read cases where even some Herceptin cases had relapses or metastases). I will see with my surgeon or General Practitioner to see what can be done if he does not want to give way! ";
"Most projects are about the "how to live with". But, I am interested in knowing the percentage of recurrences in tamography on a percentages of overall recidivism ... in fact X% of patients recidivate but 13% of these X%: that gives what percentage on arrival? And what quality of life...".
At this stage, patients need guarantees about treatment effectiveness and remission. Informational touch points should constitute support touch points for the healthcare institutions and the development of a management that would be better perceived by the patients.
Content analysis enabled identification of three patient profiles in the experienced healthcare pathway.
Patients typology
Both observable and unobservable characteristics of the patients are considered in the identification of the profiles [34]. The simultaneous study of the observable characteristics, through the stages of the pathway, and unobservable, through the perceptions and the lived experiences, allowed us to identify three profiles of patients (see figure 2).
INSERT FIGURE 2 HERE
The newcomers are mainly in a phase of information search. They try to fill the gap in information and / or a lack of understanding of the information that has been given to them. They rely on the doctors but especially on the other patients to inform them ("I lack information....Who can explain if he knows how to have info on the subject."; "are there women in the 33 who would like to get in touch to exchange ").
Figure 2 shows that patients may be new throughout their experience of the disease. At each new stage of the pathway, they are faced with new concerns often related to misunderstandings or lack of information. In the discovery stage, they have just learned the verdict and seek support from other patients. The emotional dimension of the experience is clearly seen through verbatim as "I'm lost ..... I'm trying to stay strong for the kids. " or " I'm in shock. ".
A strong cognitive dimension also marks this step. Patients generally have very vague notions of their case and are not able to undertake research on their own ("So I'm looking for people like me who had non-invasive cancer in situ and who had a bilateral mastectomy with immediate reconstruction.").
During the examination and treatment stage, patients are still lacking information. They are new compared to the knowledge of what the exams cover and their results as well as the effects of the treatments followed ("acronyms that I do not know "petscan"[2] what is compared to scan? Already had an injectable scan. It has a relationship or not? What is a FEC? ").
Finally, in the follow-up and survivorship phase, patients will question the quality of the medical follow-up and the examinations ("I have to check every 3 months, my oncologist has retired, I saw him for the last time in December. Another oncologist had to take over, it is a new one I do not know. What it was surprising when I wanted to take an appointment for the end of March, they answered, and not very kindly, that there was no place until July. I explained that I could not wait 7 months but apparently my case does not seem to interest them. ").
The cognitive dimension prevails over the last two stages of the patients’ pathway.
The altruists wish, above all, to share the beginning of their experience of the disease on the informational level as well as on the emotional and social levels. Altruists understand a lot of information about the stages of the pathway that they have already faced (especially the discovery stage). They want to share this with the other patients; especially with newcomers ("I invite you to look at my bio. I have noted a lot of information that will help you, hopefully!").
The cognitive dimension of the altruists swings between information transmission and information requesting. Patients are still asking for information about the coming stages of the pathway. They need to learn about examinations and the treatments stage or follow-up and survivorship stage ("I intend to push the oncologist to his limits to see what he proposes ... but I need TAP Scan: View of the thorax, abdomen, organs. TEP Scan: better than the previous one but does not allow to see the bones or brain - Cerebral MRI: view of the brain only (I was refused during my extension report) - bone scanning: bone scan only. The ideal would be to do a Pet Scan, bone scintigraphy and MRI cerebral so if we want to check everything ??? ").
Altruists are still in need of emotional support. They have doubts and need assurance and reassurance regarding the progress of their care. They try to discuss with patients who are able to understand the tests they are passing through ("Small passage between my series of medical examinations for my first follow-up check after Chemotherapy and radiations..., currently under hormone therapy (tamography and enantone) ... Side echo and mammo were OK: Side small nodule in the belly (in the area of enantone injection): granulomatous fibrous nodule, centimeter, hyper vascularized located in the sub-dermal region para-umbilical likely in relation to the recent injection. Normal and continuous appearance of the cutaneous and muscular planes, no collector's image, no zone of disorganization. Cardiac echo OK... Finally, I hope.. ").
At the same time, the altruists gain empathic feeling, especially for the newcomers. They share their experiences in order to reassure, accompany them in their anxieties and fears and give them the emotional support they need ("I think of you Celine, like all of us, who no longer read you I worried for you and hope you are well.... It's up to us to support you I cross my fingers for you so that this chemo is effective you have to believe it YOU'LL GO UP THE SLOPE").
The emotional and social dimensions are therefore interwoven. It should be noted that this altruistic profile emerges from the second stage of the pathway and extends to the last stage (Figure 2).
The autonomous act as a guide and an expert. The autonomous patient represents a stable and informed figure among the community. They are usually patients who have been diagnosed for some time and have more experience and are more informed than others ("You can write to us if you want us to help you find a competent institution knowing that to have access to anti-cancer centres, you must have a questionable mammogram "). Patients show an ability to become autonomous from the third stage of the pathway. They interact on the forum to share their experiences and the information learned as the process progresses ("I also had an ablation and I will go to the reconstruction by diep (no other possibilities). A friend who has done her reconstruction by prosthesis has to change it about every ten years. She has a hard time getting shell at first. Now it is also a matter of person I prefer to use components of my body if it is possible ... rather than a foreign body less natural to the aspect also .... which does not flatten in position. Other members will certainly give you their opinions ... ").
The autonomous respond to the questions of all the patients and share a great deal of information, whether medical or personal, to help them in their pathway and to accompany them in times of distress ("Breast screening by Mammography, followed by an ultrasound, remains the reference in the prevention of breast cancer and its early detection is essential ... The risk of radiation-induced cancer is very small compared to the benefit of the screening. Of radioactivity, but if it detects the tumour masses, it does not detect micro calcifications in contrast to mammography. "). Their approach is more factual and rational where the cognitive and social dimensions of the experience dominate.
The identification of the three patient profiles allowed us to model them from a temporal (stages of the pathway) and experiential (accumulation of knowledge) perspective. Figure 2 shows on the abscissa the evolution of the profile over time and on the ordinate the lived experience. Over time and through the various stages of pathway, patients gain experience of the disease. They are more knowledgeable and want to share information more intensively. They develop a certain "expertise" and a more reasoned attitude in the transmission of the information and their knowledge.
Moreover, the dimensions of the experience differ from one profile to another. The newcomers need above all information and have little experience of the stages of the pathway in which they find themselves. They are not exclusive to the disease discovery stage but may also be considered new during the examination stage and the follow-up and survivorship stage. Even if the cognitive dimension from an information acquisition perspective prevails strongly in their behaviour, the emotional dimension is also very present.
Altruists have assimilated some of the information they can share (cognitive dimension from a perspective of transmission) and they have a more or less important experience in the care pathway. The dimensions that prevail for them are emotional (emotions partly controlled) and social (empathy, support). Nevertheless, they remain in an active process of information acquisition.
Finally, the autonomous are characterized by a rationalization of the lived experience and a willingness to share (social dimension). The cognitive dimension (willingness to transmit what they know) is also very strong.
The behavioural dimension that underlies the three experiential dimensions previously mentioned is present in these profiles. It manifests in all the patients by decision-making such as changing the follow-up structures, the demand for prescriptions for complementary examinations ("I said goodbye to my Parisian hospital after 25 years, today 'I am ready to change oncologist for better cancer monitoring', 'I have a PET scan (at my request with my oncologist)' ").
[1] tbd = tablet per day, tb is the abbreviation for drug tablet
[2] Petscan is the abbreviation of Positron Emission Tomography Scan