FLIPPer Study, 3.0
Research type
Research Study
Full title
Family Life Impacts of Paediatric Respiratory Papillomatosis study
IRAS ID
350122
Contact name
Daniel Hawcutt
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 4 months, 18 days
Research summary
Summary of Results
Recurrent Respiratory Papillomatosis is a rare, chronic condition, caused by the Human Papillomavirus, mainly types 6 and 11. It is characterised by recurrent warts/papillomas which grow along the respiratory tract, and can cause hoarseness, stridor and airway obstruction. Unfortunately, there is no cure, and patients often require repeated surgeries to remove the papillomas. It affects both adults and children, though the childhood disease is often more aggressive and likely to recur post treatment. Existing research mainly focuses on the efficacy of treatment options, though recent research has started to look at the quality of life (QoL) of these patients. This new qualitative research has mainly been produced through the use of surveys capturing specific points, instead of exploring the broader impacts of the condition. Additionally, it is often focused on adults with the condition, despite the condition being worse in children, and having a larger impact on the families due to the lack of independence of the children. This has left a gap in the knowledge surrounding the wider impact that a chronic condition like RRP can have on the patient and family. The FLIPPer study aims to address this gap, by exploring the familial perspective of this condition and its impact, through a narrative style interview and thematic analysis. From this, we hope to enhance the service delivery and support that we are able to provide to patients and families with the condition.Summary of Research
Family Life Impacts of Paediatric Respiratory Papillomatosis Study (FLIPPer)This study was carried out at Alder Hey Children’s NHS Foundation Trust, sponsored by the University of Liverpool, and had approval from Health Research Authority and Health and Care Research Wales, and ethical approval from the London – Chelsea Research Ethics Committee (reference: 25/PR/0057). No funding was needed for the study.
Juvenile onset Recurrent respiratory papillomatosis (JORRP) is a childhood onset, rare disease caused by the HPV virus, whereby warts grow in the airway. These warts can compromise the voice and airway of the patient. Children with RRP often need repeated hospital visits to manage their condition as there is no cure. This would affect the patient and their families.
Available research looks at treatment options, including surgeries. However, there is little research looking at how the condition affects the day to day lives of the patients and their families, and their experiences. This paper tried to explore this.
The clinical lead consultant at Alder Hey found eligible families for the study. 5 families, for 4 patients, were involved in the study. These parents represented children requiring more treatment due to more severe disease than the others, as well as children who had been diagnosed earlier than the others involved. The study involved telephone interviews, lasting 30-60 minutes. The interviews allowed the parents to speak freely on their experiences bringing up topics that they found important. Some topics were asked about specifically, including diagnosis, challenges with peers and their emotional response. The interviews were thematically analysed to look for common themes across all interviews. This revealed trove main themes: medical concerns, including the frequent surgeries; the parents’ experiences of worry, guilt, and disruption in their lives and careers; the impact on the child, including on their education and with peers; challenges, such as bullying and disruption; support systems, including the positive side from the hospital but the lack of other resources.
The repetitive and frequent treatment visits were a great topic of discussion during the interviews. Parents discussed their concerns and worry over the unknown long-term effects of repeated anaesthetic exposure, and the challenging emotions they faced when deciding to go ahead with treatments. They also discussed the emotional burden of these appointments including their own worries whilst staying strong for their children and their children’s reactions to the appointments. Some parents discussed their concerns over how the visits may affect their child’s education, alongside other challenges such as their child’s interactions with peers because of the condition’s effect on their voice. Furthermore, some parent’s discussed the relying on family members and moving jobs, career, and housing to make attending appointments easier. Parents also discussed the lack of formal support systems, with some online forums being too severe compared to their child and increasing their worries or being culturally different and not relatable.
These results will help inform clinicians and other health care workers involved in the care of JORRP patients about areas that families find the most challenging, so that further support can be offered in these areas if possible. This could include linking with other families for support. The results have shown that RRP affects more aspects of daily life than we might have expected, including in education, careers, and emotional wellbeing. It has highlighted the need for more support in these areas, for both the patients and their families.
Whilst no future research is currently planned, research could be conducted to explore the long-term effects of repetitive anaesthetic exposure, to ease the burden on parents, as well as longitudinal research looking at how any further support may help families, or the change between child and adult medicine with the condition. More information on the study can be found by contacting the research team at Alder Hey Children’s NHS Foundation Trust or looking for any future publications of the study. The results of the study have been shown at 2 conferences across the UK to date, with another pending, and there is a plan to publish the study.REC name
London - Chelsea Research Ethics Committee
REC reference
25/PR/0057
Date of REC Opinion
12 Feb 2025
REC opinion
Further Information Favourable Opinion