(327) Procedural distress and intervention in children with CF ages 6-11: A single center interdisciplinary quality initiative

Background: Offering interventions for coping with procedures improves the CF care experience and contributes to child and family resilience [1].The global aim of this initiative was to improve quality of life of children with CF and caregivers by employing mental health informed approaches to routine procedures. Our specific aim was to decrease average reported distress of children with CF aged 6-11 years old who are identified as experiencing procedural anxiety by a caregiver.

Methods: In 2020, two open-ended focus questions on experience with procedures (Table 1) were presented to parent members of our pediatric CF Family Advisory Council (FAC). Quality efforts resumed in June 2021 and coincided with FDA approval of elexacaftor/tezacaftor/ivacaftor for children with CF aged 6-11 with qualifying mutations. Initiation of modulator therapy requires increased lab monitoring in the first year, thus a 6 question pre-survey was distributed to caregivers of children in this age range in July 2021 to explore perception of most distressing routine CF procedures for their child and intensity of observed distress (scale of 1-10). Qualitative and pre-survey responses informed interventions: notifying caregivers of lab procedures prior to clinic visits and delivering written information on coping skills. Between August 2021 and March 2022 three PDSA cycles were completed studying frequency of nursing correspondence prior to CF visits when phlebotomy was ordered. An 8-question post survey was developed and distributed in April 2022. Post survey analysis is in process and is expected to further inform process and outcome measures of intervention.

Results: Informal analysis of qualitative responses to FAC focus questions suggest perceived benefit and preference for advanced notification of procedures: “If I am well prepared and given time to address it with my kid...we have better outcomes.” “[Child] is really good about being brave if we can prepare him in advance.” Of pre-survey respondents (n =26) 70% ranked phlebotomy as “most distressing” from listed routine procedures (PFTs, throat swab, shots/injections). This majority rated their child’s observed distress from phlebotomy as an average of 8. Over 3 PDSA cycles, the percentage of patients ages 6-11 eligible for labs during a routine CF encounter (n = 78) who were given advanced notice and/or provided with a written coping resource increased from 0% at baseline to a total of 73%. Monthly percentage of lab eligible patients reached ranged from 56-92% between September 2021 and March 2022. While early in the process of post-survey data collection and analysis, qualitative and pre-survey responses suggest advanced notification and anticipatory guidance is valued by pediatric CF caregivers.

Conclusions: Results suggest feasibility for advanced communication of labs in a high-volume clinic and highlight the value of collaboration between psychosocial team members and nursing in improving the care experience. As lab draws were ranked most distressing of routine procedures by a majority of caregivers, identifying effective processes for employing preventive interventions in CF ambulatory care remains an opportunity for further exploration.

Acknowledgements:

References: [1] Georgiopoulos, AM, Christon, LM, Filigno, SS, et al. Promoting emotional wellness in children with CF, part II: Mental health assessment and intervention. Pediatric Pulmonology. 2021; 56: S107– S122. https://doi.org/10.1002/ppul.24977