Symtom, besvär och tid hos kvinnor och män med lungcancer

Sammanfattning: Background: Many patients with lung cancer (LC) are diagnosed in late cancer stages, with palliative needs due to symptom burden. Although LC is increasing in women, few studies have focused on gender-related differences in symptoms and other concerns. One aim of this thesis was therefore to examine symptoms and other issues potentially causing distress in men and women with LC (sub-study I-III) and how well these issues are assessed by commonly used assessment instruments (sub-study III). As this patient group generally has short survival times, a further aim was to examine potential delays in the care trajectory (sub-study I) as well as how these patients experienced time during their first year with LC (sub-study IV). Methods: Sub-study I was based on data from medical records and included 314 patients with LC. Sub-study II-IV included patients with inoperable LC, using data derived from EORTC QLQ C- 30+LC13 (sub-study II) (N=159), an open question: what do you perceive as most distressing at present? (sub-study III) (N=343) and qualitative interviews with 35 patients (sub-study IV). Analysis strategies included descriptive and inferential statistics (sub-study I-III), as well as content analysis (sub-study III-IV). Results: Patients reported many, varied and intense symptoms at all time-points studied. Patients also reported many issues which were distressing during their first year with LC. Most of these concerns could be related to somatic and psychosocial problems, but 27% of the patients also reported concerns categorized as related to contact with the health care system (HCS) as causing most distress for them at some point during their first year with LC. Men and women generally reported similar symptoms and other concerns. Those differences which were found between men and women were often psychosocial and were reported more often by women close to diagnosis. Differences were not always related to sex alone but also to other factors in the patients life situation, such as age, education and civil status. Women <65 years reported more problems related to contact with the HCS. Between 55-59% of all distressing concerns reported in response to an open question were judged as being clearly assessed by three self-reported instruments commonly used for cancer patients. The results also showed extensive time intervals in the care trajectory for these patients, often in excess of recommendations by the Swedish LC study group. Patients described experiencing a lack of time in the HCS leading to long waiting times, limited time for patient-professional contact and poor coordination with risk for errors. Waiting both caused and reinforced the uncertainty inherent in patients situations. Limited time for patient-professional contacts was equated with little care for the person, rather than the LC case . Patients also described existential aspects of their changed perception of time including a re-evaluation of their future and reprioritization of their use of time. Conclusion: This thesis clarifies a need for a more efficient LC care trajectory. More systematic assessment and management of patients concerns is also needed. Problems related to contact with the HCS should be highlighted in both research and clinical practice. This thesis further indicates the need for time for care that is relational and unpredictable. Patients ways of viewing and prioritizing time during this severe sickness can be seen as being in conflict with how the HCS allocated time to patients. Even if this thesis highlights similarities and differences in symptoms and other concerns between women and men with LC, there is still a need of research about what these problems mean for men and women with LC in their daily life.