New palliative care approach aims to ease daily struggles for cystic fibrosis patients

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

The primary palliative care intervention will be clinically implemented at a practice level at all CF centers and offered to all patients and families. For the baseline and outcome research questionnaire based surveys, inclusion and exclusion criteria are as follows: Inclusion Criteria: Patients (age \> 12 years) who are treated at the participating CF Centers will be eligible for participation in the study if the following inclusion/exclusion criteria are met: 1. Have a diagnosis of CF. 2. Receive treatment at one of the participating CF Care Centers in the study. 3. Age ≥ 12 years. 4. For patients age 12-17 years, willingness and ability to provide implied informed consent by a parent or legal guardian for the patient's participation in the study, with child's implied assent, AND willingness and ability to provide consent by the parent or legal guardian for the parent's or guardian's participation in the caregiver assessment, for proxy completion of selected study measures. 5. For patients age \>18 years, willingness and ability to provide implied informed consent for participation in the study. 6. Willingness to complete questionnaires two times. 7. English or Spanish as the primary language. 8. In order to ensure generalizability of the intervention, participants will not be excluded from the study for any of the following reasons: 1. Extent of CF disease severity or lung/liver transplant status. 2. Current use of CFTR modulators or other medical, psychological, or complementary therapies. 3. Concomitant participation in another clinical research study. 4. Lack of a participating caregiver for patients age \> 18 years. Caregivers (age \> 18 years) will be eligible for participation if the following inclusion/exclusion criteria are met: 1. Are an identified caregiver of a patient with CF of any age, who receives treatment at one of the participating CF Care Centers in the study. 1. For patients age \< 18 years, the caregiver will be a parent or legal guardian. 2. For patients age ≥ 18 years, the caregiver will be chosen by the patient (e.g., parent, spouse, partner, other relative or friend). 2. Willingness and ability to provide implied informed consent. 3. Willingness to complete questionnaires two times. 4. English or Spanish as the primary language. 5. The CF patient(s) (age \> 12) for whom the caregiver provides CF care may accept or decline participation. Exclusion Criteria: Any subjects who are deemed unable to participate will be excluded, including those with evidence of cognitive impairment severe enough to prevent implied informed consent or completing the survey instruments, or at the PI's discretion.