Resumen:
Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice.Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD.Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n¿=¿7; n¿=¿4); one caregiver (n¿=¿3); and one clinician (n¿=¿8). There was a single caregiver interview, and an expert consensus group¿academics (n¿=¿3), clinicians (n¿=¿9), patients (n¿=¿4), and caregivers (n¿=¿2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached.Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations.Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.
