Table 4 Differences in difficulty between the patients and spouses in the adolescents’ and young adults’ generation (patients, n = 55; spouses, n = 55)

1. Difficulty in performing activities of daily living

2. Difficulty in seeking expert advice on the disease state and treatment

3. Complaints with health care providers

4. Lack of information on treatment and disease state

5. Lack of information on self-care

6. Conflict over family relationships

7. Concerns for family members

8. Difficulty in planning life

9. Conflict over relationships with non-family members

10. Difficulty in adapting to changes in the social environment

11. Lack of local support services

12. Difficulty in solving work-related issues

13. Difficulty in making financial arrangements

14. Lack of information on welfare services available during treatment