Quality of Life and Supportive Care after Oesophageal Cancer Surgery. Long-term experiences and evaluation of a telephone based nurse-led supportive care programme

Abstract: After oesophageal cancer surgery it is known that patients have a reduced QOL and that they suffer an unmet need of support. The overall aim of this thesis was to investigate patients’ experiences of QOL and supportive care as well as to evaluate a telephone based nurse-led supportive care programme to patients after oesophageal cancer surgery. The thesis comprises two quantitative (I, IV) and two qualitative studies (II, III). The aim of Study I was to evaluate changes in QOL over time as an indicator for the timing of support. The results showed that there is a significant QOL nadir at 2 months compared to 12 months after surgery. This was true for general QOL both for symptom- (p<0.001) and function scales (p<0.001) as well as for diagnose specific (oesophageal cancer) QOL symptoms (p<0.001). The aim of Studies II and III were to illuminate patients’ experiences of their QOL (II) and of supportive care (III) from a long-term perspective after surgery. Data collection was conducted with focus group interviews and the analyses were conducted with conventional qualitative content analysis. The results of Study II show that the patients’ lives are severely hampered by adverse symptoms for a long time after surgery and that the recovery period is experienced as a struggle. The main problems in the patients’ new life situation are those connected with nutrition and diarrhoea that was shown not only to affect the patients from a physical perspective but also from a social and emotional perspective. The results from Study III showed that the patients experienced that support after surgery was fundamental for their life after surgery. However, the patients experienced that their health care system was unclear and hard to navigate in and that there was a big gap between in- and outpatient care. The support needed to include physical, psychological and social issues throughout the whole cancer trajectory. Study IV was conducted as a RCT evaluating the effect of a telephone based nurse-led supportive care programme. The results show that the intervention group was significantly more satisfied with received information for items concerning ways in which they could help themselves (p=0.001), written information (p<0.001), and for the global information score (p=0.021) compared to the control group. The control group scored significantly higher on the item regarding the wish to receive more information (p<0.001). No effect of the intervention was shown on QOL or on the number of health care contacts. In conclusion, the results of this thesis show that the patients’ QOL is negatively affected after surgery (I, II) and that the patients are in a great need of supportive care to manage a life that is hampered by several remaining physical, psychological and social issues (III). The support needs to be individualised according to the patients’ needs, to be introduced at en early stage after surgery (I, III) and to continue throughout the whole cancer trajectory (III). The telephone based nurse-led supportive care programme was shown to have a significant effect on the patients’ experience of perceived information but no effect on QOL or health care contacts (IV).