Difficult conversations: Discussing prognosis with children with cystic fibrosis

Abstract

Communication about prognosis is important but also difficult for providers, patients, and families. Appropriately timed conversations, using tools to facilitate communication, could ensure patients receive timely, accurate information.

Clinical communication preferences in cystic fibrosis and strategies to optimize care

“…While responses from all participants were analyzed individually, results have been presented thematically across participant types to present a greater breadth of findings. Although the themes identified rely heavily on clinician data, the findings align with preliminary work (Table 1) and prior studies primarily examining the lived experiences of individuals and families with CF 10,11,30 . Future studies would benefit from collecting perspectives of pediatric patients and family caregivers in greater depth.…”

“…Although the themes identified rely heavily on clinician data, the findings align with preliminary work (Table 1) and prior studies primarily examining the lived experiences of individuals and families with CF. 10,11,30 Future studies would benefit from collecting perspectives of pediatric patients and family caregivers in greater depth. Limitations to this qualitative study include the possibility of selection bias, which could reduce generalizability.…”

“…Patient‐centered interventions have been recommended as strategies to improve adherence 5 as clinic communication is positively correlated with improvements in treatment adherence 9 . CF patients and care teams report challenges when discussing the management of CF, 1 including sensitive subjects such as adherence, psychosocial concerns, and prognosis 10–12 . A single‐center study 13 demonstrated the feasibility of improving comfort among members of the CF care team in discussing difficult topics through training in specific communication skills (eg, SPIKES 14 ).…”

Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care

“…Previous work by Linnemann and colleagues describes a palliative care curriculum for CF care team members that could be paired with existing tools and resources and shared broadly with providers who care for individuals with CF . Establishing standards of care would help normalize palliative care as a component of CF care and help bridge some of the gaps between patient, parent/caregiver, and provider perspectives on when and how to discuss important issues like prognosis and advance care planning, noting providers generally feel it's appropriate to broach these conversations later than patients would like . In addition, guidance for involvement of palliative care specialists would be helpful to CF care teams, considering of course variation among centers in the availability of specialty palliative care teams.…”

Cystic fibrosis year in review 2018, part 2

“…Despite emotions ranging from denial, desire to protect their parents and concern that information they received was “sugar‐coated,” most patients stated the information did not alter their adherence or life goals. Overall, an individualized timeline for disclosure was recommended …”