Quality of Life in Middle-aged and Older Patients With Congenital Ichthyosis: a Qualitative Study With In-depth Interviews
Conditions: Congenital Ichthyosis
Sponsor: Maastricht University Medical Center

COVER PAGE 
 
 
 
Official title: The perceived quality of life in adult patients with inherited 
ichthyosis: a qualitative interview study  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
ClinicalTrials.gov ID: NCT05610306  
 
Document date: 20th of November 2024  
 

Written description of the clinical study 
 
Study objectives: The aim was to gain insight into the perceived impact of ichthyosis on the 
quality of life (QoL) of adult patients using the biopsychosocial model. 
 
Study design: We conducted a descriptive study using individual semi-structured interviews. 
Perceived QoL was investigated and the biopsychosocial (BPS) model by Engel et al. (1977) 
was used as a guiding framework to construct the interview guide.  
 
Methods: Patients ≥30 years of age and a molecular diagnosis of inherited ichthyosis, 
excluding ichthyosis vulgaris, were purposively recruited at a medical specialized center for 
genodermatoses in Maastricht and through the Dutch ichthyosis patient association to achieve 
broad recruitment resulting in a varied population. Semi-structured interviews were used to 
collect data. All interview data was recorded, transcribed, and analyzed using an inductive and 
reflexive thematic content approach. 
 
Supporting Information 
Appendix S1. Interview protocol in English, with the spoken language during the 
interviews being Dutch. 
 
General first interview question 
What does quality of life mean to you as an ichthyosis patient? 
 
Topics 
Questions from this list of topics are asked in a natural way, with the participant's story 
leading the way. In addition, based on the previously completed questionnaire about 
demographics of the participant, it is considered which questions are relevant, e.g., yes/no use 
of medication. 
 
Biological quality of life 
How does ichthyosis affect your daily life? And what has the greatest impact? 
- Physical symptoms of ichthyosis (cues: pain, itching, mobility), how limiting are these 
symptoms? 

- Daily skin care, how limiting? 
- Medication use, effectiveness, yes/no side effects, how limiting? 
- Sexual health, how limiting? 
- Challenges regarding a desire to have children, if so, which ones? 
- What are your experiences with medical care (e.g., with dermatologists, first- and second 
line health care)? 
 
Psychological quality of life 
How does ichthyosis affect your mental health? How does it limit your quality of life? Or not 
at all? 
- Self-image/self-esteem? (Cues: shame, stress, self-confidence) 
- Do you have any concerns related to ichthyosis? 
- Do you think about ageing with ichthyosis? In what ways? And can medical care support 
aging with ichthyosis, if so, how? 
- How do you view the future? 
 
Social quality of life 
How does ichthyosis affect you socially? 
- Does ichthyosis affect your relationships with others? (Cues: worrying about stigma, 
avoidance, social isolation) 
- Support from family members, friends, and colleagues? 
- Career and/or work situation? 
- How do you perceive that society views ichthyosis? 
 
Thank you very much for sharing your experiences with me. I have asked you all the topics 
that are on my list. Please indicate whether there are any relevant topics that were not 
discussed yet but that you would like to add to this interview. 
 
How do you look back on this interview? Any feedback for me?