Table 1 Instruments used in dsd-LIFE
Construct | Instrument | Domain (number of items) | Response scales | Translation requireda | Reference |
|---|---|---|---|---|---|
Sociodemographics | |||||
Sociodemographic information | European Social Survey (ESS) | Area of residence (1: ESS); Education (2: ESS, 1: SCb); Household and family (1: ESS, 8: SC); Occupation (3: ESS); Nationality (3: ESS, 2: SC); Religious denomination (3: ESS); Participation/“you and other people” (5: ESS, 3: SC) | 4- to 7-pt. Likert Scales Dichotomous (yes/no) Free text | None | [42] |
Quality of life | |||||
Quality of life | WHO-QOL-Bref | Physical health (7); Psychological QOL (6); Social relationships (3); Environment (8) Global (2) | 5-pt. Likert Scale | None | |
General health | |||||
General health Condition related health issues | EHIS (European Health Interview survey), self-constructed | 1 EHIS; 2 SC | 3- to 5-pt. Likert Scale Dichotomous (yes/no) Free text | None | |
Mental health and psychological factors | |||||
Mental Health | |||||
EHIS, self-constructed | 10 EHIS, 36 SC | 4-pt. Likert Scale, dichotomous | |||
Screening for anxiety and depression | Hospital anxiety and depression scale (HADS) | Anxiety (7); Depression (7) | 4-pt. Likert Scale | None | [28] |
Screening for ADHD | Adult ADHD Self-Report Scale (ASRS-v1.1) | ADHD (6) | 5-pt. Likert Scale | Polish | |
Screening for autism | AQ-10 | Autism (10) | 5-pt. Likert Scale | Dutch, French, German, Polish | [54] |
Psychological factors | |||||
Self-esteem | Rosenberg self-esteem | Self-esteem (10) | 4-pt. Likert Scale | None | |
Coping | DSD-questionnaire for adolescents | Shame and stigmatization (5); Openness (4); SC (4) | 4-pt. Likert Scale | Dutch, French, German, Polish, Swedish | [57] |
Autonomy | ESS | Autonomy (4) | 5-pt. Likert Scale | None | [42] |
Attachment style | ECR-RS | Avoidance (6), Anxiety (3) | 7-pt. Likert Scale | Dutch, French, German, Polish, Swedish | |
Psychosexual issues | |||||
Body perception and feelings | Body Image Scale (BIS) | (36) | 5-pt. Likert Scale | French, Polish, Swedish | |
Sexuality | Self-constructed | Satisfaction with frequency of sexual activity (1), with sex life in general (1), and with sexual functioning (1); Sexual frequency (1); Sexual problems and suffering (1); Sexual orientation (1) | 5-pt. Likert Scale Dichotomous (yes/no) Free text | Dutch, French, German, Polish, Swedish | |
Stages of intimate relationships | Self-constructed | 16 items | Dichotomous (yes/no) Number | Dutch, French, German, Polish, Swedish | |
Gender dysphoria in adolescents and adults | Utrecht Gender Dysphoria Scale (UGDS)c | Screening (1), Female version (10), Male version (10) | 5-pt. Likert Scale | French, Polish | |
Feelings of masculinity and femininity | Self-constructed | 2 items | 10-pt. Likert Scale | Dutch, French, German, Polish, Swedish | |
Current care and support | |||||
Utilization of and satisfaction with care | Adapted CHC-SUN Self-Report Version (Modules 1 and 2) | Utilization (4), SC (10) Satisfaction with care: diagnosis/information (2 + 2 SC), patient-centred care (3), doctor’s behaviour (3) | 5-pt. Likert Scale | Dutch, French, German, Polish, Swedish | |
Satisfaction with care | CSQ-4 | (4) | 4-pt. Likert Scale | None | |
Satisfaction with DSD specific care | Self-constructed | (3) | 5-pt. Likert Scale Dichotomous (yes/no) Free text | Dutch, French, German, Polish, Swedish | |
Past care and support | |||||
Information management | Self-constructed | Diagnosis (1); Disclosure and understandability (14) | 4- to 7-pt. Likert scales Dichotomous (yes/no) Free text | Translation needed for all countries | |
Treatment | Self-constructed | Treatment location (1), Satisfaction with treatment (1), Psychological care (1), Satisfaction with psychological care and General support (3) | 4- to 7-pt. Likert scales Dichotomous (yes/no) Free text | Translation needed for all countries | |
Hormone treatment | Self-constructed | Screening question on hormone treatment received (1): Oestrogen, Oestrogen-Progestin combination, Testosterone, Dihydrotestosterone (DHT), Cortisone, Fludrocortisone, Growth hormone, GnRH-Agonist, Treatment for tall stature, Anti-androgens, Aromatase inhibitors | Dichotomous (yes/ no) Free text | Translation needed for all countries | |
Satisfaction with hormone treatment (per hormone and with respect to side effects) | Self-constructed | Timing of treatment (6), Satisfaction with treatment in terms of associated side effects (4) | 3- and 5-pt. Likert scale Free text | Translation needed for all countries | |
Performed surgery and/or medical procedures | Self-constructed | Screening question on performed procedure, including age and patient consent: Vaginoplasty, Clitorectomy/clitoral reduction, Vaginal dilations, Hypospadias repair, Relocation of testes, Removal of the gonads, Removal of the uterus, Breast removal, Breast enlargement, | Dichotomous (yes/no) | Translation needed for all countries | |
Satisfaction with medical treatment | Self-constructed | Number of treatments (1), Surgery-related complications (1), Satisfaction after surgery/functionality (2), Impact on life (3) | Tick box 5- and 6-pt. Likert Scale Free text | Translation needed for all countries | |
Fertility | Self-constructed | Communication and satisfaction with communication (5), Fertility (4) | Dichotomous (yes/no) 5-pt. Likert Scale Free text | Translation needed for all countries | |
Patients’ views and opinions on DSD | |||||
Ethics | Self-constructed | Care and support (7), Patient’s rights (12), Society (8) | Different Scales | Dutch, French, German, Polish, Swedish | |
Terminology | Self.constructed | Satisfaction with medical terminology (3) | 5- and 10-pt. Likert Scale Choice of 32 condition-specific terms | Dutch, French, German, Polish, Swedish | |