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Table 2 Themes and subthemes of the factors contributing to the choice to undergo gene therapy and the overall attitude/opinion of the patient group

From: Patients’ view on gene therapy development for lysosomal storage disorders: a qualitative study

Theme

Subtheme

Gaucher

Fabry

MPS III

Outcome of gene therapy

Effectiveness of gene therapy

Gene therapy should be as effective as current therapy

Hope for gene therapy to be more effective than current therapy

Every potential effect gives hope

Quality of life

Risks and side effects

Gravity of risks and side effects

Critical attitude

Acceptance

High acceptance

Duration of side effects

Burden of gene therapy treatment

Method of gene therapy

Critical attitude

Acceptance

High acceptance

Practical aspects

Current situation

Current treatment options

Good

Uncertainty

None

Beyond-individual aspects

Important

Very important

Extremely important

Individual aspects

Differ between group and have different impact

Ethical aspects

Personal and societal aspects

Not disease specific