The following Draft Position Statement on Unmet Patient Needs has been developed based upon feedback from patient organisations representing over 1.2 million kidney cancer patients/carers across the globe. Each statement is derived from extensive patient surveys and publications of patient-generated data by the IKCC and Affiliate/Partner organisations worldwide along with scientific publications outlining the limitations of existing therapies.

Unmet Needs for Patients with aRCC (All)

  1. Treatments that meet patient and carer priority goals of cure/durable remission, disease stability, and long-term duration of response. [1]
  2. Treatments with improved tolerability, measured with improved disease-specific quality of life (QoL) instruments and patient-report outcomes (PROs) included in all clinical trials to enable informed decision making. [2]
  3. New options including new mechanisms of disease control, including novel agents beyond existing VEGF-TKI agents and checkpoint inhibitors. [3]
  4. Biomarkers to reliably guide patients in their treatment selection. [4]
  5. Clinical trials in heavily pretreated patients (3rd line and beyond) to provide access to agents that may offer continued disease control with acceptable tolerability/quality of life.
  6. Improved shared decision making/informed decision making to ensure discussion of all multi-disciplinary treatment options including surgery, radiation, ablation, and palliative care.
  7. Evidence and guidance supporting best sequencing strategies, including post-adjuvant therapy.
  8. Increased access to genetic screening for hereditary syndromes per guidelines. [5]
  9. Reduced barriers to quality care, including reduced financial toxicity globally. [6]
  10. Increased research to meet the needs of underserved populations and populations with higher incidence of RCC. [7]
  11. Improved psychosocial support for patients and their carers. [8]
  12. Survivorship care plans to manage surveillance strategies, late-term effects, and quality of life. [9]

 

Unmet Needs for Patients with Rare Variant RCCs

  1. Clinical trials for specific rare variant RCCs with goal of evidence-based treatment guidelines for specific variants. [10]
  2. Access to therapies for rare variant RCCs, many of which qualify as rare cancers. [11]

 

References:

[1] Battle D, Vaishampayan UN, Msaouel P, et al. Patient priorities and expectations of systemic therapy in metastatic renal cell carcinoma. JCO 41(16), 4560 (2023). DOI:10.1200/JCO.2023.41.16_suppl.4560.

[2] Bergerot CD, Malhotra J, Bergerot P, et al. Patients’ perceptions regarding the relevance of items contained in the functional assessment of cancer therapy kidney symptom index-19. Oncologist 28(6), 494-500 (2023). DOI:10.1093/oncolo/oyad028.

[3] Pontes O, Oliveira-Pinto S, Baltazar F, et al. Renal cell carcinoma therapy: Current and new drug candidates. Drug Discovery Today 27(1), 304-314 (2022). DOI: 10.1016/j.drudis.2021.07.009.

[4] Calvo E, Schmidinger M, Heng DYC, et al. Improvement in survival end points of patients with metastatic renal cell carcinoma through sequential targeted therapy. Cancer Treatment Reviews, 50, 109-117 (2016). DOI:10.1016/j.ctrv.2016.09.002.

[5] Lyss AP. Global survey suggests patients are underinformed, face obstacles to care. Cancer Therapy Advisor (May 5, 2023).

[6] Giles RH, Maskens D, Bick R, et al. Patient-reported experience of diagnosis, management, and burden of renal cell carcinomas: Results from a global patient survey in forty-three countries. JCO 37(15) e16091 (2019). DOI:10.1200/JCO.2019.37.15_suppl.e16091.

[7] Staehler MD, Vaishampayan UN, Pal SK, et al. Comparison of financial toxicity among patients with non-metastatic versus metastatic renal cell carcinoma. JCO 42(4), 408 (2024). DOI:10.1200/JCO.2024.42.4_suppl.408.

[8] Senkin S, Moody S, Díaz-Gay M, et al. Geographic variation of mutagenic exposures in kidney cancer genomes. Nature 629, 910–918 (2024). DOI:10.1038/s41586-024-07368-2.

[9] Giles R, Maskens D, Bick R, et al. Patient-reported experience of diagnosis, management, and burden of renal cell carcinomas: Results from a global patient survey in 43 countries. Eur Urol Open Science 37, 3-6 (2022). DOI:10.1016/j.euros.2021.12.003.

[10] Moretto P, Jewett MAS, Basiuk J et al. Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs, Can Urol Assoc J 8(5-6), 190-194 (2014). DOI:10.5489/cuaj.1907.

[11] Giles RH, Choueiri TK, Heng DY, et al. Recommendations for the management of rare kidney cancers, Eur Urol 72(6), 974-983 (2017) DOI: 10.1016/j.eururo.2017.06.040.

[12] Naik P, Dudipala H, Chen Y-W, et al. The incidence, pathogenesis, and management of non-clear cell renal cell carcinoma. Ther Adv Urol.16 (Feb 29, 2024). DOI: 10.1177/17562872241232578.