Abstract
Background: Patient-reported outcomes (PROs) are key indicators of health status and functioning, coming directly from the patient. Comprehensive monitoring of PROs enables implementation of person-centred care. Currently, the PROs that patients with advanced renal cell carcinoma (RCC) or hepatocellular carcinoma (HCC) consider of greatest importance remains unknown. Methods: A rapid literature review was carried out to identify PROs commonly reported in clinical studies of patients with advanced RCC/HCC. We searched MEDLINE, CINAHL & PsycInfo for relevant peer-reviewed publications in the period from 2000 to 2021. Pre-specified selection criteria were applied to all retrieved records. Findings were integrated into a narrative synthesis. Results: Eighty-one studies met our selection criteria and were retained. Most research was on advanced RCC (n = 64, 79%); 46 studies (57%) were drug trials. Only twenty-six studies (32%) employed PROs as their primary endpoint. Most PROs concerned physical symptoms (45% RCC, 54% HCC) and emotional wellbeing (19% RCC, 16% HCC). The most common outcome measured was quality of life (65% of the total), followed by fatigue (62%) and pain (54%). Whether selection of these PROs was patient-driven was not reported. Conclusions: A wide range of PROs were assessed. Deficits in PROs often cause patients to seek out help; however, which PROs matter the most to people with advanced RCC/HCC must be further clarified. Targeting, monitoring, and responding to the ‘right’ PROs can enhance provision of person-centred care in advanced RCC/HCC and augment the clinical efficacy of established and emerging targeted therapies.
| Original language | English |
|---|---|
| Article number | 102241 |
| Journal | European Journal of Oncology Nursing |
| Volume | 63 |
| DOIs | |
| Publication status | Published - Apr 2023 |
Bibliographical note
Funding Information:This project is being conducted by the European Oncology Nursing Society, who has received funding from Eisai Europe Limited and Ipsen Innovation SAS. The views presented are those of the authors and not the funding bodies.
Funding Information:
For the remaining categories, cognitive symptoms comprised confusion (RCC 12%; HCC 0%), difficulty concentrating (RCC 3%; HCC 12%), or difficulty remembering things (RCC 6%; HCC 6%). PROs related to HRQoL focussed on evaluating perceived health status and general well-being of the patient. PROs specifically related to sexuality (RCC 11%; HCC 18%) or spirituality (RCC 2%; HCC 0%) were included in different domains, although they are not always measured with generic cancer PROMs. Finally, PROs concerning social issues included problems or limitations in relationship with others such as with family (RCC 8%; HCC 6%) or friends (RCC 12%; HCC 12%) or social support (RCC 6%; HCC 6%).Some progress in the RCC/HCC clinical area should however be noted. For instance, Functional Assessment of Chronic Illness Therapy (FACIT) developed the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Kidney Cancer Symptom Index (NFKSI) (Cella et al., 2006) for renal cancer (used in 57% of the RCC studies in this review), and the latest version (NFKSI-19) also includes non-physical items such as ‘worry that my condition will get worse’ or ‘I am able to enjoy life’. For liver cancer, the Functional Assessment of Cancer Therapy – Hepatobiliary (FACT-Hep (Butt et al., 2012)) used in 17.7% of the HCC studies in this review, divides the items in domains and includes physical, social (e.g. sexuality, family relationships and friends support), emotional and functional items. These PROMs have been developed for liver and kidney cancer in general, not RCC or HCC. Qualitative research (e.g. interviews, focus groups) has been conducted in the early stages of PROM development to identify relevant content and support the content validity of topic-specific PROMs. However, further work is needed to ensure existing PROMs are appropriate for the needs of people with advanced RCC/HCC, in order to support comprehensive assessment of the impact of cancer treatments on peoples' lives.This rapid review has created new evidence in relation to what PROs are most frequently (e.g. physical symptoms and quality of life) and less frequently reported as assessed in advanced RCC/HCC (e.g. sexuality, difficulty remembering things). Our findings will serve to further discussion what PROs people with advanced RCC/HCC prioritise and would like to be asked about by the clinical team. For health professionals to address and support health needs associated with advanced RCC/HCC, an effort must be made to identify most important concerns and needs, and then regularly assess and monitor these. Currently, most PROs in advanced RCC/HCC are collected as part of clinical trials, with excessive focus on physical symptoms and ambiguity about their actual use or value in clinical practice. PROMs must be incorporated in the clinical workflow to allow patients to have a voice and enable effective person-centred and person-led cancer care. For this to be useful, patient-validated PROs should be collected using appropriately validated PROMs for use in the advanced RCC/HCC patient population. All members of the healthcare team must be involved in developing PRO-driven supportive care that is appropriate to meet the needs of people with advanced RCC/HCC as and when they arise (Kelly et al., 2021).The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Mrs Celia Diez de los Rios de la Serna reports financial support was provided by European Oncology Nursing Society.
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