Patients? perceptions of the value of PET in diagnosis and management of non-small call lung cancer, CHERE Working Paper 2007/5

A randomized controlled trial comparing the use of PET versus no PET provided the opportunity to investigate the value patients placed on any additional information provided by the PET scan. Interviews were undertaken with patients after their diagnosis had been made and, in the case of those who had surgery, once they had returned home following the operation. Content analysis was used to describe and analyse the text of the interviews. The aims of the research were to explore with people receiving PET their perceptions of its impact on aspects of well being, acquire a better understanding of how patients understand and deal with the outcomes (both benefits and dis-benefits) of PET, and assess the decision making processes regarding PET and subsequent treatment (surgical and non-surgical) from the patients? perspectives with the aim of providing information which can be used by providers of care in improving the process of care. Interviews were conducted with a sub-sample of 59 trial participants between February 2000 and July 2001, between six and eight weeks post-surgery. Thirty-three, (56%) had received a PET scan and 26 (44%) had not. The majority of patients consulted a surgeon in the expectation of having surgery to remove their cancer. Participants viewed PET (along with the other tests) as being most likely to provide information and reassurance to the surgeon, rather than having any impact on their (patients?) decisions. As far as these participants were concerned, there was only one important decision - whether to have surgery - and that decision was in the hands of the surgeon. All other decisions were subordinate to this major milestone and thus did not appear significant to patients. Thus, on its own, PET appeared to be of little additional value to this group of patients. Between 23%-45% of respondents reported some complications whilst in hospital or some difficulties at home but these were mostly of a relatively minor nature. Even though some patients reported that their health was worse than when they entered hospital, most participants reported that their health was improving at the time of the interview. Most participants had, at least briefly, discussed the issue of relapse with a doctor at a consultation subsequent to their surgery. The diagnosis of cancer is the key issue; all that happens to them subsequently seems to be determined by clinicians. It is important that clinicians explain the reasons for tests such as PET to patients and use diagnostic tests appropriately in the management of the disease. Understanding the experiences of patients provides useful information for clinicians in preparing patients for surgery for lung cancer and for cancer services in considering the level of ongoing support required for patients following surgery.