Table 2 Characteristics of the changes
Name of the program | What is the focus of change? | Which format is used? | What are the elements of the program? | Which main types of outcomes were assessed? |
|---|---|---|---|---|
Overview of the care program or component thereof without implementation in routine clinical care yet (n = 7) | ||||
 Hospital2Home [31] | Palliative care | Nurse-led case conference | Multidisciplinary team-based care Lead of the conference: trained palliative care specialist nurse Involvement patient/caregiver in decision-making Situated in community setting Individual care plan and follow-up of action points | Primary outcomes: Palliative Care Outcome Scale Other outcomes: Patient-reported outcomes Feasibility Patient experiences |
 Aerodigestive multidisciplinary team [39] | Assessment co-morbidity | Multidisciplinary team meeting | Multidisciplinary team-based care Medical care | Clinical outcomes Feasibility |
 PRISIM [46] | Support- Coping | Group-based sessions | Psychoeducation 6-weeks program with two-hour group sessions | Patient-reported outcomes Patient experiences |
 Nurse-led support group [40] | Support- Advocacy group | Support group | Patient advocacy/support group (two-hour meetings once a month) Lead of the group: nurse | Patient-reported outcome |
Use of eHealth in care | eHealth platform | eHealth personal platform including information, PROMs, medication use, individual results of lung function tests and medication coach eConsult possibility Home-based spirometry function | Feasibility and safety Patient-reported outcomes Patient experiences | |
 MBSR [36] | Support- Coping | Mindfulness-based stress reduction program (group-based sessions) | Standardised mindfulness training (eight weekly group sessions and further training at home) Use of techniques such as the body scan, sitting mediation and light yoga Sessions provided by a MBSR instructor | Primary outcome: safety Patient-reported outcomes Feasibility |
 PPEPP [32] | Support- Coping | Group-based sessions | Psychoeducation (three group sessions) Lead of the sessions: psychologist Contributions to the sessions by pulmonologist, a nurse specialized in ILD, an oxygen supplier, a social worker and physiotherapists | Patient-reported outcomes Patient satisfaction |
Overview of the care programs or components thereof implemented in routine care (n = 6) | ||||
 SCDAT | Palliative care and advanced care planning | Tool for the assessment of needs Multidisciplinary team meeting | Tool used by clinicians in outpatient setting to assess patients’ needs Follow-up multidisciplinary team-based care (palliative care consultant, palliative care nurse, psychologist, ILD consultant, ILD nurse, pharmacist and MDT coordinator) | Process measures Stakeholders’ feedback |
 NPP [41] | Pharmacological management program | Follow-up visits | Nurse-led support of pharmacological needs | Clinical outcomes (description) |
 IPF care [43] | Pharmacological management program | Nurse-led telephone program | UK program: program led by nurses specialized in ILD, telephone contact Austria program: program led by nurses specialized in ILD, telephone contact and home visit | Clinical outcomes Patient satisfaction Feasibility |
 An educational initiative: performance improvement study [35] | Overall organisation of the care program | Follow-up team-based care | Performance improvement initiative: An educational initiative to improve team-based care in which metrics (quality indicators) are used to assess, measure and adapt the delivered care | Performance indicators (process measures) Stakeholders’ experiences |
 Use of care coordinator [42] | Overall organisation of the care program | Follow-up care with coordinator | Case coordination (similar to specialist IPF nurse): assessment and administration, patient education, discussing transplantation, drug reimbursements, discussing drugs, oxygen therapy, discussing tests and results | Patient-reported outcomes Patient satisfaction Process measures Economic analysis |
Palliative care and advanced care planning | Multidisciplinary collaborative care model | Collaborative multidisciplinary team-based care Involvement patient/caregiver in decision-making Individual care plan and follow-up of action points Close link with community | Healthcare use Preferred place of death Caregivers’ experiences | |