What is most distressing at present? : A mixed method study about patients with inoperable lung cancer

• People with lung cancer (LC) experience many distressing concerns. Standardizedassessment questionnaires tend to use predetermined items reflectingprofessionals’ perspectives of important issues, but even other areas may causedistress for patients. We therefore studied spontaneous reports of what isMOST distressing for 343 patients with inoperable LC during the 1st year postdiagnosis, and explored potential gender differences, while controlling for age.Patients with inoperable LC were recruited close to time of diagnosis throughtwo university hospitals. They were asked to respond to an open inductivequestion “What do you find most distressing at present?” at 6 timepoints: closeto diagnosis and prior to treatment (T1), two weeks after T1, and one, three, sixand 12 months after T1. The manifest content of all responses was analyzed.Descriptive statistics and logistic regressions were used to meet the study aims.Results are presented in 3 overarching dimensions: distress related to the body,distress related to life situation and iatrogenic distress. Distress related to thebody was reported by 90% of patients at one or more time points during the1st year post-diagnosis, and was more common over time. Distress related tolife situation was reported by 80% of the patients at one or more time points,becoming less common over time. Iatrogenic distress, i.e. distress caused bycontact with the health care system (HCS) was reported by 27% of this sampleas most distressing at some time point during this 1st year. Logistic regressionsshowed that men > 64 years reported most distress related to breathingmore often than did women in the same age group during the 1st year postdiagnosis. Women >64 years reported most distress related to “outlook” moreoften than did men in the same age group during this year. Women < 65years also more commonly reported most distress related to emotionalproblems at any time point in the 1st year, and reported most distress relatedto the HCS close to diagnosis more often than men in the same age group did.We found this patient group reported many and varied concerns as MOSTdistressing, with many concerns beyond the scope of common assessmentinstruments. A disturbing finding was how common reports of most distresswere related to the HCS in this very symptomatic group of people. Both genderand age seem to be factors influencing distress related to breathing, outlook,emotional problems and contact with the HCS.

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