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Table 3 Illustrative quotations about SoC and subsequent treatment with ADV7103 (translated from French original transcripts)

From: Lived experiences of patients with distal renal tubular acidosis treated with ADV7103 and of their caregivers: a qualitative study

Concepts

Quotation examples (participant code number)

Difficulties at school or work

Administrative burden

[About SoC] “And what was also complicated for him was that he ate in the canteen and therefore, since one of the treatments had to be taken at noon, we had to organise a PAI* with the school so that he could take his treatment and all that" (# 13)

Parents’ work

[About SoC] “But at some point, that's why, like I said earlier, I quit my job. [About ADV7103] But now we have started normal life again. I went back to my job and all that, so did my husband. We have a normal life now, it's okay” (# 134)

Social/family issues

Difficulties travelling

[About SoC] “During holidays, it was necessary to protect the capsules from heat. So, I remember episodes where, like when we were camping and we didn't have a fridge, we had to ask the campsite management to put the capsules in a cool place” (# 132)

Social activities

[About SoC] “During lunchtime, I had to leave for the infirmary and I couldn't meet, eat with my friends or whatever. No, they were going to eat and I was going to take my medicine” (# 35)

Tension in the couple

[About ADV7103] “This is a really great drug. It really helped me psychologically, it changed me, it changes a lot in life. [About SoC] Frankly, before, my husband and I, we would just argue. [About ADV7103] Since this drug came out, we are really, very, very well. I am very happy with this medicine" (# 134)

Emotional and physical burden

Invasive questions

[About SoC] “…you can't see that he's sick and he didn't really want the friends to see it… Sometimes they would ask him: 'But, what are you taking?’ [About ADV7103] There it is. He was glad he didn't have to take treatment at lunch anymore so that he wasn't different from the others" (# 13)

Adherence

[About SoC] “Yes, sometimes I forgot and sometimes, I simply didn't feel like it, I didn't want to, so I skipped it. In fact, I wasn't really serious. Sometimes I would only take two doses […]. I was less consistent" (# 35)

Taste

[About SoC] "Too salty. She was having a hard time, she would swallow it anyway, but still, she didn't really like it. It was complicated, when she was younger […], [About ADV7103] but after the change of treatment, it went better" (# 16)

Gastro-intestinal events

[About ADV7103] “It's true that right from the start when she took it, there was no pain in her stomach at all. So that was a little bit of comfort for her" (# 121)

[About ADV7103] “Fortunately, there was the last treatment… it has no effect on her digestion anymore so we are really happy” (# 72)

[About ADV7103] “In fact, I was hungrier after the change of treatment" (# 11)

Satisfaction with ADV7103

Ease of use

“Frankly, I have nothing to say, the truth. He takes it, I open the bag, hey, he opens his mouth, hey, he empties everything in his mouth. Afterwards he drinks water. Hop, everything goes down" (# 34/# 36)

Ease of swallowing

“So, they're little…like granules, little kernels. At first, she had a hard time swallowing them all, it was a bit complicated. Now it's going very well…She puts them all in her mouth and then she takes a big glass of water and she swallows them" (# 121)

Sachet opening

“It is not easy to open them [referring to ADV7103 sachets]. I don't always think about carrying around scissors or whatever, so sometimes it's annoying" (# 35)

Dosage quantity

"Frankly, nowadays it's okay, I take four sachets in the morning, four sachets in the evening, but at the very beginning, I took seven in the morning and seven in the evening. So, it was a lot harder and at the beginning I wanted to quit and all that, but afterwards well … Afterwards, they managed to diminish dosage little by little" (# 35)

Efficiency

“It is also more effective, over time. So, this is the goal, that the effects remain permanently to be able to help him, so this is a good step forward. We are happy regarding this” (# 72)

Daily living

“I find it much better than the one before, and I feel comfortable” (# 12)

"It was a treatment that made our daily life easier anyway" (# 14)

“The current treatment she has where she takes her dose in the morning and evening and then she's done with it. It’s life changing" (# 35)

"Yeah, it's day and night compared to what I had before" (# 91)

“Yeah, frankly, for us, it was a big, big relief to change medication. Frankly, it changed my child's life. As she says, it was very heavy to carry both physically and mentally" (# 121)

"Yes, this treatment was a big change for us, a big springboard for better, I think, to support his disease" (# 121)

“She's very happy, we as parents are the same. We can see the difference. We no longer recognize our child there who eats well, who finishes her plates. She asks for more to eat when she still wants more" (# 133)

  1. *PAI: Projet d'accueil individualisé (plan for personalized care at school)