Abstract
Objectives: Little is known about the perceived psychological impact of
CFTR modulator treatment in patients with end-stage lung disease. This
qualitative study aims to identify themes that can be used in psychotherapy
or counselling.
Methods: Adult cystic fibrosis (CF) patients in critical need who were
eligible for a managed access program (MAP) with ELX/TEZ/IVA therapy at
UZ Leuven and UZ Brussel in Belgium were recruited. The semi-structured
in-depth interview covered medical, physical, emotional and social topics.
Thematic analysis techniques (TAT) were used to identify themes. Anxiety
and depression (A&D) screening was done using the GAD7 and the PHQ9.
Results: To date, 14 patients participated. Mean age was 32.3 years (range
18–47; SD = 7.7). Mean FEV1%pred increased from 33.9% (SD = 4.8) before
ELX/TEZ/IVA to 51.4% (SD = 13.9) at time of interview. Mean # of
hospitalisations decreased from 3.4 (range 1–7; SD = 1.7) to 0.28 (range
0–2; SD = 0.6). For 6 patients, transplant preparation had started and 3
otherswere listed. Since ELX/TEZ/IVA,1 remained on the transplant list. No
significant changes were found for A&D. 4 patients received psychotropic
medicines both before and after start ELX/TEZ/IVA. 8 patients had
expressed suicidal ideations before ELX/TEZ/IVA; at interview, 6 still had
occasional suicidal thoughts. The preliminary TAT identified 7 themes:
1. Expectations about ELX/TEZ/IVA; 2. Fear and acceptance of end of life/
transplantation; 3. Impact of CF on Quality of Life (QoL); 4. Treatment
routine and burden; 5. ELX/TEZ/IVA and changes in QoL; 6. Identity: coping
with extreme changes; and 7. Future uncertainties, fears and hope.
Conclusion: In-depth interviews with patients with end-stage disease,
who received ELX/TEZ/IVA through a MAP, showed relevant changes in
their self-reported physical and mental well-being. It is important to
carefully listen and learn from these stories, to counsel patients starting
CFTR modulating treatment, but also to provide individualised psychological
Care
| Original language | English |
|---|---|
| Article number | WS03.03 |
| Pages (from-to) | 10-10 |
| Number of pages | 1 |
| Journal | Journal of Cystic Fibrosis |
| Volume | 21 |
| Issue number | Supplement 1 |
| Publication status | Published - 2022 |
| Event | 45th European cystic fibrosis conference, Rotterdam - Ahoy, Ahoyweg 10 3084 BA Rotterdam, Rotterdam, Netherlands Duration: 8 Jun 2022 → 11 Jun 2022 |