How quality of life data contribute to our understanding of cancer patients’ experiences? A study of patients with lung cancer Ali Montazeri 1 , Robert Milroy 2 , David Hole 3 , James McEwen 1 & Charles R Gillis 3 1 Department of Public Health, University of Glasgow; 2 Department of Respiratory Medicine, Stobhill Hospital; 3 WestofScotlandCancerSurveillanceUnit,Glasgow,UK Accepted in revised form 5 June 2002 Abstract A prospective study was conducted to measure quality of life in newly diagnosed lung cancer patients attending a chest clinic in a large teaching and district general hospital in a geographically defined area (northern sector of Glasgow, Scotland). Quality of life was assessed at two points in time, pre-diagnosis (baseline)and3monthsafterdiagnosis(follow-up)usingthreestandardmeasures;theNottinghamHealth Profile (NHP); the European Organisation for Research and Treatment of Cancer Quality of Life Ques- tionnaire (EORTC QLQ-C30), and its lung cancer supplement (QLQ-LC13). Out of 133 lung cancer patients diagnosed during the study period, 129 patients (97%) were interviewed pre-diagnosis. Of these, only63%ofthepatientshadanactivetreatment.Ninety-sixpatientswerealiveatfollow-up,ofwhom82 patients were re-interviewed. Thus, only 82 patients who had complete data were used in the analysis. Comparing patients’ pre-diagnosis and follow-up scores on the NHP, only sleep difficulties improved slightly. Patients reported increased perceived health problems of all other characteristics studied (energy, p ¼ 0.0004; physical mobility, p ¼ 0.0008). Similar results were observed on the EORTC questionnaires indicating that patients’ functioning and global quality of life had decreased. The only significant im- provementafter3monthswasseeninpatients’cough(p ¼ 0.006).Thereweremarkedincreasesinhairloss (p < 0.0001), constipation (p ¼ 0.007), and sore mouth (p ¼ 0.0004). The findings suggest that patient- centred variables should receive sufficient consideration in the treatment of lung cancer. The study results clearlyindicatethatinformationonqualityoflifecontributestoourunderstandingofpatients’experiences of their cancer treatment. Key words: EORTC QLQ-C30, EORTC QLQ-LC13, Lung cancer, Nottingham Health Profile (NHP), Quality of life Introduction Lungcancerremainsamajorpublichealthproblem world-wide [1] and the majority of patients who developlungcancerdieofthisdiseasewithinayear [2].Thus,qualityoflifeinlungcancerpatientsisan importanttreatmentoutcomeinadditiontolength of survival, especially when the treatment intent is so often palliative and not curative [3]. Patients’ assessments of their quality of life are shown to differ from their physicians’ [4], emphasising that measuringqualityoflifefrompatients’perspective canaddmoreinformationtoourunderstandingof how patients react to their treatments [5, 6]. For example, studies have shown that non-small cell lungcancerpatientswouldnotchoosechemother- apy for its likely survival benefit of 3 months but wouldifitimprovedqualityoflife[7]. A recent review of literature indicates that studies of quality of life in lung cancer patients have demonstrated harm from much of the treat- mentofferedaswellasbenefit[8].Someresearchers QualityofLifeResearch 12: 157–166, 2003. Ó 2003 KluwerAcademicPublishers.PrintedintheNetherlands. 157