Aims: To design a cancer treatment satisfaction questionnaire (CancerTSQ) for use with patients receiving any form of cancer treatment.
Methods: The CancerTSQ format is based on established ‑TSQ measures (starting with the DTSQ for diabetes ©Bradley). Relevant items were selected from the existing ‑TSQ item library by oncologist coauthors and modified as needed. Twenty-six interviews were conducted with UK English-speaking patients with a range of different cancers including breast, prostate, lymphoma, myeloma, stomach, renal, bowel, head and neck, lung, bone, bladder, gynaecological and oesophageal. Participants (10 men, 16 women; mean age 57 years) were recruited from Barts Health NHS Trust (n=10), UK Maggie’s Centres (n=7) and Cancer Research UK (n=9). Cancer treatments experienced included surgery, radiotherapy, chemotherapy, immunotherapy, hormone therapy, and stem cell transplant. Semi-structured interviews, conducted via secure video-link or telephone, were designed to elicit spontaneous mention of sources of satisfaction/dissatisfaction with cancer treatment prior to completion of a draft version of the CancerTSQ. Where time permitted, participants rated the importance of each item for inclusion in the questionnaire (from 3 ‘very important’ to 0 ‘not at all important’). The CancerTSQ Design Team met between sets of 4-5 interviews and items were retained, modified, expanded or removed. Interviews continued until no further changes were required.
Results: The final draft of the CancerTSQ contained 14 items, all originating from the -TSQ item library. Eight of these items were expanded or modified. ‘Information’, ‘Pain/discomfort’, ‘Side-effects’ and ‘Support from staff’ were consistently rated as ‘very important’ or ‘important’ for treatment satisfaction/dissatisfaction. Five items were removed: ‘Convenience’, ‘Flexibility’, ‘Fits in with your life’, ‘Demands’ and ‘Time taken’. These items were less important to people having cancer treatment and were captured in a single item, ‘Difficulty’. The majority of participants rated the remaining items as ‘very important’ or ‘important’.
Conclusions: The CancerTSQ is a cancer-specific patient-reported outcome measure enabling patients’ satisfaction/dissatisfaction with cancer treatment to be measured in clinical trials and routine clinical practice. The CancerTSQ will be valuable in identifying ways to improve patients’ experience. Data collection is underway to establish optimal scoring, quantitative validity and reliability of the CancerTSQ.
