Table 2

Study format and schedule: intervention and control group

ScheduleDetails
Visit 1
(next visit after diagnosis confirmation)
Steps:
  • Clinic visit—first visit after confirmation of diagnosis of IPF by patient’s clinician.

  • Invitation to participate by clinician. If agreeable, RC will obtain informed consent, and provide with questionnaires and preparedness survey.

  • If randomised to control group, RC will provide with routine printed patient education.

  • If randomised to intervention group, RC will provide with routine printed patient education and introduce SUPPORT nurse interventionist.

  • Interventionist will provide and review SUPPORT Intervention materials (see table 1).

  • Interventionist will instruct SUPPORT intervention dyads in maintaining log of home use of SUPPORT materials (online supplementary appendix 1).

  • First SUPPORT intervention session should take 60 min

  • All control group and SUPPORT intervention patients will have scheduled next clinic visit in 3 months, provide number to call if questions.

Visit 2
3 months after visit 1
Steps:
  • All SUPPORT intervention and control group dyads will have clinic visit with patient’s clinician.

  • SUPPORT intervention group will have research visit with interventionist for delivery of intervention for approximately 60 min.

Previsit 3
Visit 3
3 months after visit 2
PI will speak with clinician to remind about addressing advanced planning prior to visit 3.
Steps:
  • All SUPPORT intervention and control group dyads will have clinic visit with patient’s clinician. All SUPPORT intervention dyads will have research visit with interventionist for delivery of intervention. This session should take approximately 60 min.

  • All SUPPORT intervention and control group dyads will repeat questionnaires, knowledge survey, preparedness survey and evaluation.

Follow-up: at study closeAll SUPPORT intervention and control group patients—patient care trajectory (ED visits, hospitalisations, formal palliative care referrals, location of death)
*Caregiver Follow-up
At study close
All SUPPORT intervention and control group caregivers—caregivers of patients who die during the study will be asked to contact the interventionist to provide this information and asked to complete the QODD instrument.
  • DLCO, diffusion capacity of the lungs for carbon monoxide; ED, emergency department; IPF, idiopathic pulmonary fibrosis; QODD, quality of dying and death; RC, research coordinator; SUPPORT, S-Symptom Management, U-Understanding the Disease, P-Pulmonary Rehabilitation, P- Palliative Care, O-Oxygen Therapy, R-Research Considerations and T-Transplantation.