Icelandic patients in oncology outpatient care: Distress, coping and satisfaction with care

This study was conducted at three oncology outpatient clinics in Iceland. The overall aim was to investigate outpatient psychosocial distress, coping strategies and satisfaction with care and to explore patients? experiences of having cancer while receiving treatment. Specific focus was on comparison between genders, age groups and those who lived close to treatment centre vs. those who had to stay away from home and to identify association between variables. A further aim was to test the feasibility of the BSI 18 and the WOC-CA and to perform psychometric tests on the EORTC IN-PATSAT32 within an Icelandic context. Quantitative and qualitative methods were applied. Study I consisted of 40 patients, 53% were women, the majority of the participants were between 51?70 years old. Study II-III included 217 patients of whom 57% were female and the mean age was 62. In study IV 25 semi-structured single interviews were carried out on 16 women and 9 men, mean age 55. Women had significantly higher scores than men on most factors for psychosocial distress and on some of the coping strategies. Younger patients were found to be more distressed than the older ones. Somatic symptoms were significantly more severe in patients who lived close to the treatment centre than those who did not and more severe in those having chemotherapy than radiotherapy. Getting cancer was understood as an alarming experience but soon after the diagnosis it was important to be able to balance life as it was before cancer against present situation to achieve normality. Encountering caring behaviour enhanced satisfaction and well being in the patients. Principal component analysis extracted four factors for the EORTC INPATSAT32: ?satisfaction with nurses? conduct?, ?satisfaction with doctors? conduct?, ?satisfaction with information? and ?satisfaction with service and care organisation?. Patients were most satisfied with nurses? conduct and least satisfied with service and care organisation. Association was found between high psychological distress and living alone, stress (WOC-CA), behavioural escape-avoidance and distancing. It was also found that those living alone and those with high somatization were more likely to be dissatisfied with ?nurses? conduct? while men and those with elevated level of distress were more likely to be dissatisfied with information. In conclusion reactions to the diagnosis of cancer indicate strong emotional reactions where women, the younger persons, participants who lived alone or used certain coping strategies seem to be more vulnerable. The Icelandic versions of the questionnaires BSI 18 and WOC-CA were found to be valid and reliable and could be employed effectively to identify symptoms of distress and coping patterns in Icelandic cancer patients. The psychometric strength of the EORTC INPATSAT32 was satisfactory although revealing a need for further development of the instrument to use for outpatient satisfaction