Table 2.
Overview of questionnaires
| Questionnaire | Key measurement area | Recipients | Donors |
|---|---|---|---|
| General | |||
| Demographics and Socioeconomic Status Questionnaire | Demographics and Socioeconomic Status | X | X |
| Smoking behaviour | Smoking behaviour | X | X |
| Food Frequency Questionnaire (FFQ) | Food intake including alcohol intake | X | X |
| Alcohol Use Disorders Identification Test (AUDIT) | Alcohol use disorders | X | X |
| EuroQol 6 Dimensions (3-level version) (EQ6D-3L) | Health-related quality of life | X | X |
| RAND-36 version 1/ Short Form-12 Health Survey (SF12)b | Health-related quality of life | X | X |
| Checklist Individual Strength 20/8 Revised (CIS20R or CIS8R)c |
CIS20R: fatigue severity (subjective experience of fatigue), concentration problems, reduced motivation and reduced activity level CIS8R: fatigue severity |
X | X |
| Modified Transplant Symptom Occurrence and Symptom Distress Scale 59 revised (MTSOSDS-59R) | Side-effects of Immunosuppressive medication | X | X |
| Pittsburgh Sleep Quality Index (PSQI) | Sleep quality | X | X |
| Gastrointestinal health | Gastrointestinal function and complaints | X | X |
| Bristol Stool Chart | Stool consistency assessment | X | X |
| Basel Assessment of Adherence to Immunosuppressive Medication Scale (BAASIS) | Medication adherence | X | X |
| Carolinas Comfort Scale | Pain | X | |
| Pain after donation | Pain | X | |
| Post-operative pain | Pain | X | |
| Reflection on donation | Reflection on the donation experience | X | |
| Physical functioning | |||
| Short Questionnaire to Assess Health-enhancing Physical Activity (SQUASH)a | Physical activity | X | X |
| Dutch Standard for Healthy Physical Activity (NNGB) | Physical activity | X | X |
| Insufficient Physical Activity Behaviour in the Netherlands (OBiN) | Sedentary behaviour | X | X |
| Psychological functioning | |||
| World Health Organization Well-Being Index (WHO-5) | Well-being | X | X |
| State-Trait Anxiety Inventory (6-item version) (STAI6) | Anxiety symptoms | X | X |
| Patient Health Questionnaire (9-item version) (PHQ9) | Depressive symptoms | X | X |
| Pearlin Mastery Scale | Personal control | X | X |
| Utrecht Coping List (47-item version) (UCL-47) | Coping | X | X |
| Cognitive Failure Questionnaire (CFQ) | Subjective cognitive functioning | X | X |
| Transplant Effects Questionnaire (TxEQ)d | Emotional response to the receipt of a transplanted organ | X | |
| Donation decision Regret Scale | Regret about the donation decision | X | |
| Social functioning | |||
| Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) | Societal participation | X | X |
| Work and work ability | Work and work ability | X | X |
| Work Role Functioning Questionnaire (WRFQ)a | Work functioning | X | X |
| Family Assessment Device (General Functioning) (FAD-GF) | Family dynamics | X | X |
| Active Engagement, Protective Buffering and Overprotection (Social Functioning Scale) (ABO)a | Support from partner | X | |
| Social Support List-Interaction (SSL-I) | Social support | X | X |
aQuestionnaire administered until 2021
bThe RAND-36 was temporarily replaced by the SF-12
cThe CIS20R was replaced by the CIS8R in 2021
dafter 2021 only administered 6 months after transplantation