The Prevalence and Nature of Psychosocial Distress in Post-Treatment Haematological Cancer Survivors

Abstract

Background: Haematological cancers are the fourth most common cancer in the developed world. Although the incidence of haematological cancers is increasing in many countries, new and improved treatments have led to increased survival. Haematological cancers often require aggressive treatment, causing both late and long term physical and psychosocial effects lasting years. Those survivors faced with psychosocial issues in the post-treatment period may not always receive the support they need. Research into psychosocial outcomes for post-treatment haematological survivors is limited. To enable these cancer survivors the opportunity to receive any support they may require, it is first necessary to know the size and nature of the problem. Aim: To investigate the nature, magnitude, and timing of psychosocial distress post-treatment amongst haematological cancer survivors in NZ and explore their post-treatment support experiences. Methods: This study used a two-phase exploratory sequential mixed methods design underpinned by a critical realist philosophy and the theoretical model of Psychological Health in Cancer Survivors. In Phase One, 23 post‐treatment haematological cancer survivors participated in a semi‐structured interview. Data were analysed using thematic analysis. Phase Two comprised a cross-sectional survey of post-treatment haematological cancer survivors (n = 409). Logistic regression was used to identify predictors of distress. Chi-Square analyses were used to calculate the differences in the need for psychological support. Open text responses were analysed using quantitative content analysis. The integration of the two phases was conducted using a narrative approach. Findings: Qualitative findings showed that the barriers to psychosocial wellbeing in post-treatment haematological cancer survivors largely revolved around the lack of information and discussion around psychosocial issues and the gap in promoting the relevant psychosocial resources available to survivors. Quantitative results expanded on these findings demonstrating that nearly a quarter (24.6%) of haematological cancer survivors reported needing more psychological support from a health professional in the post-treatment period. Significantly, quantitative results showed that 21.9% of post-treatment haematological cancer survivors were suffering from significant distress. There was a higher prevalence of significant distress in younger people aged 18–39 (36.7%), those unemployed or on sick leave (32.6%), and women (28.2%). Logistic regression analyses identified three significant predictors of distress: not being born in NZ, low social support, and high fear of recurrence. Conclusion: This study has provided new and important evidence regarding psychosocial distress in post-treatment haematological cancer survivors. There may be distressing aspects of the cancer trajectory that cannot be avoided, such as side effects of treatment and cancer's physical symptoms. However, this research has shown that more could be done in the post‐treatment period to ease the psychosocial consequences of cancer and its treatment. Distress screening needs to be implemented as part of post-treatment follow-up, to identify those haematological cancer survivors who may be struggling. There is also a need for more psychosocial discussion and implementation of individualised psychosocial interventions.