Table 1.

Generic and cancer-specific instruments which have been utilised to assess health-related quality of life in renal cancer

Instrument	Description
Generic instruments assessing quality of life
RAND medical outcome survey Short Form 36 (SF-36) and Short Form 12 (SF-12) [52]	SF-36 is a questionnaire with 36 multiple choice items. Eight domains are assessed and two summary scores are produced (physical and mental component summary scores). The eight domains are: physical function, role limitations due to physical health problems, bodily pain, general health perception, emotional wellbeing, role limitations due to emotional problems, energy/fatigue, and social function. A shortened version has been developed, the SF-12, which can be completed in a third of the time as it only contains 12 items. Results from the SF-36 and SF-12 can be classified according to the SF-6D, which allows preference based health state utilities to be derived for health economic evaluation
EuroQol (EQ-5D) [53]	The EuroQol questionnaire contains five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. For adults, two versions exist; the EQ-5D-5L which contains five levels for each of the five domains and the EQ-5D-3L which contains three levels. According to NICE guidelines, the recommended method to assess utilities is using the EQ-5D questionnaire [12]
Convalescence and Recovery Evaluation (CARE) [54]	This questionnaire was designed to assess short term physical and cognitive function following abdominopelvic surgery. It contains 27 items and four domains: pain, gastrointestinal, cognitive, and activity
Cancer-specific instruments assessing quality of life
Cancer Rehabilitation Evaluation System-Short Form (CARES-SF) [55]	Cancer-specific quality of life questionnaire containing five domains: physical, psychosocial, medical, sexual functioning and marital
European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ) C30 [56]	General quality of life questionnaire used in different cancer types designed to assess QoL in clinical oncology trials. The questionnaire assesses global QoL, symptom scales and five functional scales (physical, role, cognitive, emotional, and social). A renal cancer-specific domain has recently been developed, although it remains to be externally validated [6]. This includes the following disease-specific items: flank pain, oedema, haematuria and urinary tract infections [6]
Functional Assessment of Cancer Therapy-General (FACT-G) [57]	The FACT-G questionnaire contains core domains and can be used in all cancer types, including renal cancer. The following domains are assessed: physical wellbeing, social/family wellbeing, emotional wellbeing, and functional wellbeing. A number of disease-specific modifications exist, which are pertinent to advanced RCC (see below)
Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI) [58, 59]	The FKSI is used in individuals with advanced renal cancer to assess disease-related symptoms, treatment side effects, and general function and wellbeing. A number of variations/subsets have been published, each containing a different number of items. The FKSI-15 contains 15 items, the FSKI-19 contains 19 items, while the FKSI-Disease Related Symptoms (FKSI-DRS) focuses specifically on disease-related, rather than treatment-related quality of life. For example the FKSI-DRS assesses haematuria, fevers, chest symptoms, bone pain and fatigue
Renal Cell Carcinoma-Symptom Index (RCC-SI) [60]	This questionnaire assesses renal cancer-specific physical and psychological symptoms and can be used in both localised and advanced renal cancer. Items assessed include: haematuria, difficulty passing urine, pain, chest and bowel symptoms, sleep and fatigue
Instruments to assess psychological wellbeing
Impact of Events Scale (IES) [61]	Questionnaire to assess distress by evaluating two domains: intrusive thoughts and avoidance behaviour
Hospital Anxiety and Depression Scale (HADS) [62]	This questionnaire contains 14 multiple choice questions assessing anxiety and depression
Mishel Uncertainty in Illness Scale (MUIS) [63]	This consists of four domains regarding diagnosis, treatment, disease severity and outcomes: ambiguity, complexity, lack of information and unpredictability