Study design

The study followed a phenomenological research design guided by Interpretative Phenomenological Analysis (IPA). The aim of IPA is to explore in detail the processes through which participants make sense of their own experiences [13]. We believe phenomenology generally and IPA specifically can make a valuable contribution to furthering the understanding of the meaning of DMT’s for people with early MS. It draws attention to how the interpersonal, material and social contexts of the individual life shape the decision-making process on DMT’s.

Setting and ethics

This study is part of the doctoral research project “Lived Experiences of People with Recently Diagnosed Multiple Sclerosis”. The aim of this project is to examine the lived experiences of people with MS and the meaning of their diagnosis in daily life. Earlier publications of this project described the themes of receiving the diagnosis [14], work [15] and the meaning of MS within the context of family life [16]. The ethical committee of the St. Elisabeth Hospital in Tilburg approved the research and the patients gave informed consent to participation.

Recruitment

Inclusion criteria for this study were: (1) being diagnosed with RRMS according to the revised McDonald criteria [17]; (2) having received this diagnosis within the past two years. (3) being able to speak Dutch or English. Recruitment was carried out by a member of the interview team in spring 2012.She called patients from the records of a hospital’s ambulatory MS care to invite them to participate in our study. She contacted approximately 15 patients. Five patients declined to participate due to the following reasons: “feeling overwhelmed by the request”, “personal reasons”, and “discouraged by the psychologist”. Recruitment was stopped when the number of participants had reached ten. This number was in line with our aim of carrying out an explorative study and congruent with the demands of the IPA approach [13].

Data collection and participants

Because we were interested in how people make sense of the diagnosis in their daily life we opted for semi-structured interviews. This method enables the participants to tell their stories and to develop their ideas and express their concerns at length. Also, it enables the researcher and participant to engage in a dialogue whereby initial questions are modified in the light of participants’ responses. We used a topic list as a way of preparing for the likely content of the interview (see S1 Table). The topic list used included the meaning of work, personal situation, diagnosis, and professional care. Following a phenomenological approach, we remained open for other topics coming up during the conversation. The use of medication emerged as an important topic in daily life as all participants discussed this extensively, whether they followed treatment or not.

Data was gathered from 13 people: ten people with MS and three partners that were asked by the person with MS to assist them with the interviews. The interviews lasted between one and two hours. All participants resided in the Netherlands and were of Western European descent. The participants with MS were aged 27–51 years. Table 1 shows the profile of the participants, ordered by age. The interviews were conducted from spring to fall 2012 by the first and the third author and a resident neurologist at the homes of the participants.

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Table 1. Profile of the participants.

https://doi.org/10.1371/journal.pone.0182806.t001

Data analysis

Data analysis in IPA involves a ‘double hermeneutic’ because the researcher makes sense of the participant trying to make sense of what is happening to them. The analysis can be understood as an iterative and multi-directional process involving description, interpretation, processes of reduction, flexible thinking, revision, creativity, and innovation. Most IPA studies do follow a step-by-step approach in order to be systematic and rigorous, but these steps are always combined with an open attitude by the researchers. In this study, data analysis consisted of three stages of inductive analysis of the transcriptions. In the first stage, shortly after each interview, the authors and a postdoc researcher, independently from each other, added preparatory notes in Dutch in the right margins of the transcripts. Subsequently, the transcripts and notes were discussed in a plenary meeting. The cycle of interviewing, notating and discussing was repeated after each interview until the entire sample of ten interviews was completed. In the second stage, the first author systematized the notes from the first stage into a network of in vivo codes, supported by the data analysis software Atlas.ti version 6.2 (Berlin, Germany), using a constant comparison method. In the third stage, the first author used the network of codes to reconstruct a representation of patient perspectives on DMT’s in four themes. The first author made a preliminary translation of the essential quotes falling under each theme. This translation was afterwards discussed and refined with the help of a professional translator [18].

Constant confrontation with the disease

All participants felt caught off guard by the recommendation to begin DMT’s. This feeling was related with the mode of administration (usually injections) and the prospect of having to use medication with possible side-effects for the rest of their lives. Three participants (P3 (using an injectable), P8 (receiving oral DMT) and P9 (not using immunomodulating medication)) expressed similar feelings about using an injectable in contrast to receiving oral DMT. The idea of taking injections (initially) frightened them. The meanings behind this fear seem to vary. Some participants described how initially they struggled to find good ‘spots’ for injecting medicines and to ‘view’ their bodies from the (technical) angle of injecting medicines. P2 told in detail how he had learned with the help of his wife, to operate the injection device. P3 and P8 welcomed oral administration (through pills) as a much more ‘natural’ way to take medicines in contrast to injections. Rather than operational and technical causes of fear, they raised emotional and relational ones. The idea of taking injections (initially) made them feel different, while with oral medication it was felt possible to preserve a degree of normalcy. “Pills, well, everybody sometimes takes a pill, a vitamin pill. But this is different. You have to inject yourself. The first time I was really shocked that I had to do this. But once the needle was in [my body], I felt relief. After that, I started to experiment a bit. Now, injecting [medicine] is okay with me.” {P3:295}

Besides pondering on the mode of administration, the prospect of having to use relatively invasive medication for the rest of their lives also surfaced as an element of continuous confrontation with the disease. P1 felt a ‘barrier’ to starting medication. This barrier had in her perception partially to do with not knowing how to weigh possible risks (occurrence of side effects) against possible benefits (delay of progression). The wish to become pregnant was felt by P1 as an opportunity to defer this decision as taking medication during pregnancy is discouraged. For another participant (P8), a quite ‘literal’ barrier surfaced. Having started medication, she at first no longer felt safe to travel long distances, away from her own hospital where professionals knew her and her medication. Confrontation with the disease meant for her and other participants the confrontation with a world that looked less accessible and less free. Participant 10 phrased her feeling of illness and medicines imposing limitations on her life, as follows: “[The moment that] the doctor proposed to begin medication I thought: ‘If I start, there will be no way back. In that case, I head straight towards acknowledging the fact that my life and my body are leaving me behind.’” {P10:33}

Managing inevitable decline

The recommendation of starting DMT sparked either an affirmative or negative response from the participants. Like Table 1 shows that at the time of the interview 7 of the 10 participants used medication. All participants said that they had been actively engaged with a decision about medication. Most of them perceived the limited chance to delay progression as at least one opportunity to do something about their situation. “[My doctor] gave me tablets to suppress my shakiness. And then he proposed starting me on injections. I replied: ‘If it helps, I consent to anything!’ So, I started injecting the medication. I don’t have any problem with that, with doing injections.” {P4:78} Another participant, P7, perceived the limited efficacy of medication not as an opportunity for delay of progress of illness in her life, but rather as a sign of a poor product. “Even if the efficacy had been just fifty percent, the choice [in favor of treatment] would have been easier. But it is just thirty percent. The efficacy of a placebo is thirty percent as well. That makes me think: ‘I’ll take a Smartie instead.’ (…) Thirty percent, that is so little.” {P7:144} Lived expectations for efficacy of medicines to manage inevitable decline hence varied through the sample. Most participants hoped to be part of the lucky 30%, for which using medicines has indeed effect.

Hope of delaying the progression of the disease

The participants that followed the recommendation to start treatment hoped that adherence to treatment would be effective in slowing down the progression of the disease. But the sample indicated that ‘hope’ referred to more than just the statistical information about the efficacy of medicines during the entire lifespan of a patient that is part of a representative population of patients.

First, hope was also connected with perceived physical condition here and now. Participants felt motivated to continue treatment when they felt good. In the same manner, some of them felt disappointed when ‘despite’ taking medication, they went through a relapse. The following fragment illustrates how statistical and experiential knowledge about medicines can be at odds with each other: “But then, the strength of my left leg began to fade. (…) I told him [my doctor]: ‘I want to stop with injections”. He replied: ‘Yes, there is only a thirty percent chance that the medication will keep you stable’. And yes, I remembered that he told me that before. But once my legs and my awareness began to be affected, I began to despair. ‘Why do I keep going on with injections? It doesn’t help me anyway.’” {P4:93}

Second, besides being connected to the perceived physical condition of here and now, ‘hope’ had also a relational dimension. An oral medication, fingolimod, that at the time of the interview was not yet covered by health insurances in the Netherlands, had become for participant 8 an object that signified how she worked together with her family against her disease: “And even my family said–The medicine costs 65 euros each day, so that’s 25000 euros each year–last Easter: ‘We don’t know how we will raise the money to pay for those medicines, but we will find a way to pay for it, if necessary we will pay it ourselves.’ I’m really lucky to be surrounded by such people. And that gives me hope, every time.” {8:179} Clearly in this fragment it is not only the expected efficacy of the medicine that gives the participant hope. Her hope is also related to the proximity of her family. They support her in living with her disease. By paying for her medicine (or the willingness to do so if necessary), they stay with her. She’s not left on her own.

The importance of social support

Taking or declining to take medicines was a social experience. Consideration of adhering to treatment was something that was discussed with family and friends before participants made a decision. After the decision to start treatment, family and also the MS nurse (either from the hospital or from the manufacturer of the medicine), continued to appear important in the lived experience of using medicines: “In the beginning, injecting myself caused me a lot of pain. I have an automatic injection pen. It is adjustable from 0 to 10. But I had absolutely no clue how the button worked. So, after a month, I called [MS nurse] Lisa, because I had a couple of times injected my leg like this and the needle penetrated my leg very deeply. (…) Lisa explained to me how to modify the injection pen with the button and adjust it to level 4 or 6. So now I use level 4 for my legs and level 6 for my stomach, because then you can inject with more force.” {P2:143} Other participants explained how their contact with the MS nurse from the manufacturer went beyond the technicalities of administration. They felt the call from the nurse as an opportunity to get their concerns about having MS off their chest. Participant 6 told how she had become dependent on her father and boyfriend to take her medication: “That medication [interferon beta 1a] has to be administered by injection. In the beginning, I did this myself; the MS nurse explained to me how I had to do it. I was afraid and felt very nervous about it. Actually, I still do. I [even] don’t dare do it [injecting] myself anymore.” {P6:121} In this and other interviews, taking medicines presents itself as a mode wherein relationships with close others (father, boyfriend, spouse) are lived.