1557P - The use of patient experience in UK NICE decision making in oncology

Background

Appraisal of oncology products by the UK National Institute for Health and Care Excellence (NICE) pose unique challenges, such as single arm trials, immature survival, limited data on patient/carer burden, increasing uncertainties. Patient experience, which is an integral part of the NICE process, can help mitigate some of the uncertainties and provide additional information. We aimed to assess the role of patient input in NICE decision-making process in oncology appraisals compared to other disease areas.

Methods

Completed NICE technology appraisals published between 2021–2023 were identified. The final appraisal consultation documents (FADs) describing the decision and rationale were reviewed for patient input. The main characteristics of the appraisal (e.g., type, disease area, rarity, patient population, and final recommendation), areas of patient input (e.g. prognosis, unmet need, clinical outcomes, treatment pathway, equality considerations, patients’ quality-of-life (QoL), impact on family/caregivers, impact of side effects) and details of the input (e.g. quantitative/qualitative) were extracted. Results were analysed using summary statistics.

Results

Of the 158 FADs, 51% were in oncology. The proportion of FADs with positive recommendations and the proportion including patient input in the FADs were similar in oncology vs. overall (91% vs. 92% and 87% vs. 88% respectively). Areas where patient input was most frequently reported were again similar for oncology vs. all disease areas: QoL was the most commonly mentioned input (60% in both oncology and all appraisals), followed by unmet need (46% vs. 43% respectively). Clinical outcomes were mentioned in 38% of oncology FADs, slightly lower than all appraisals (42%). Carer burden was only mentioned in 11% of oncology FADs, slightly less than in overall FADs (14%). Only one oncology FAD mentioned collecting patient experience quantitatively. No clear difference in patient input was observed between oncology appraisals and appraisals in other disease areas.

Conclusions

In oncology, there are further opportunities to explore and incorporate patient experience into the decision-making in the NICE technology appraisals.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.

Funding

Has not received any funding.

Disclosure

All authors have declared no conflicts of interest.