Operationalisation of outcome measures
| Area* | Variable | Operationalisation | Measurement moment† (for chart review data) or measurement scale and psychometrics (for survey data) | Data collection method |
|---|---|---|---|---|
| Clinical outcomes in cystic fibrosis58–60 62–65 | Pulmonary functioning | FEV1 value | T-2, T-1, T1, T2 | Chart review |
| Acute pulmonary exacerbations | Use of antibiotics: yes/no, and frequency | T-2, T-1, T1, T2 | Chart review | |
| Pseudomonas infection | Yes/No | T-2, T-1, T1, T2 | Chart review | |
| Body mass index | Value | T-2, T-1, T1, T2 | Chart review | |
| Clinical outcomes in IBD51 56 66 | Surgical treatments | Number per year | T-2, T-1, T1, T2 | Chart review |
| Medications | Use and type | T-2, T-1, T1, T2 | Chart review | |
| Endoscopies | Number per year | T-2, T-1, T1, T2 | Chart review | |
| Clinical outcomes in endocrinology57 67 | Body mass index | Value | T-2, T-1, T1, T2 | Chart review |
| Blood pressure | Systolic and diastolic | T-2, T-1, T1, T2 | Chart review | |
| For those with TS: thyroid function | TSH/FT4 value | T-2, T-1, T1, T2 | Chart review | |
| For those with CAH: androgens | 17-OHP/androstenedione value | T-2, T-1, T1, T2 | Chart review | |
| For those with hypopituitarism: testosterone level | Value | T-2, T-1, T1, T2 | Chart review | |
| For those with hypopituitarism: insulin-like growth factor | IGF-1 level | T-2, T-1, T1, T2 | Chart review | |
| For those with hypopituitarism: FT4 level | Value | T-2, T-1, T1, T2 | Chart review | |
| Medications | Use and type | T-2, T-1, T1, T2 | Chart review | |
| Healthcare-related outcomes | Experiences and satisfaction with transition to adult care‡7 32 44 52 53 55 60 66 68–72 | Experiences on two domains: (1) organisation of healthcare related to transition and (2) satisfaction with preparation for transfer | On Your Own Feet Transition Experience Scale (OYOF-TES)4 (validated 18-item scale with 5-point Likert scales, α=0.92) + self-reported satisfaction on a 1–10 scale | Survey |
| Perceived quality of care7 32 44 52 53 55 60 66 68–72 | Patient centeredness on five domains: (1) empowerment, (2) design of practice, (3) goal-setting/alignment, (4) problem-solving and (5) coordination/follow-up | Patient Assessment of Chronic Illness Care (PACIC) (validated 20-item scale with 5-point Likert scales)73 74 | Survey | |
| Self-management-related outcomes | Self-management11 | Chronic condition self-management | Partners in Health Scale (PIH) (validated 12-item scale with 9-point Likert scales)75 76 | Survey |
| Independence during consultations77 | Self-reported independent behaviours during consultations with healthcare providers | Independent Behaviours During Consultations (IBDC) (validated 7-item scale with 5-point Likert scales, α=0.79)77 + self-reported independence on a 1–10 scale | Survey | |
| Self-efficacy7 46 51 53 61 66 70 71 78 79 | Disease-related self-efficacy on four domains: (1) knowledge about the condition, (2) coping, (3) competencies during consultations and (4) medication | On Your Own Feet Self-efficacy Scale (OYOF-SES) (validated 16-item scale with 4-point Likert scales)80 | Survey | |
| Adherence7 51–54 56 58 62 81 82 | Self-reported adherence to medical treatment | Medication Adherence Rating Scale (MARS-5) (validated 5-item scale with 5-point Likert scales) (R Horne, M Hankins. The Medication Adherence Report Scale (MARS): a new measurement tool for eliciting patients’ reports of non-adherence. Unpublished Working paper 2007)83 + self-reported adherence on a 1–10 scale | Survey | |
| Quality of life | Quality of life44–46 51–53 58 62 63 67 68 71 81 84 | Health-related quality of life on four domains: (1) physical, (2) emotional, (3) social and (4) school/work | Paediatric Quality of Life Inventory Young Adult (PedsQL_YA) (validated 23-item scale with 5-point Likert scales)85 | Survey |
*References include general and disease-specific studies that included and/or recommended similar outcome measures to study transition.
†T-2: the second year before transfer; T-1: the year before transfer; T0: transfer; T1: the year after transfer; and T2: the second year after transfer.
‡Primary outcome.
17-OHP, 17-hydroxyprgesterone; CAH, congenital adrenal hyperplasia; FEV1, forced expiratory volume in 1 s; FT4, free thyroxine; IBD, inflammatory bowel disease; IGF-1, insulin-like growth factor-1; TS, Turner syndrome; TSH, thyroid-stimulating hormone.