A mixed-methods study into the quality of life of adult survivors of haematological malignancies.

Abstract

The treatments for haematological malignancies are often complex and intense and given over prolonged periods, leading to potentially debilitating symptoms and reduced quality of life (QoL). Those who survive can still experience long-term effects of both treatments and disease and often fear the recurrence of the disease. This thesis studies the QoL of adults who survived haematological malignancies. Methods: This mixed-methods study aimed to examine the QoL of survivors of haematological malignancies and identify unmet supportive care needs. The first quantitative survey phase used QoL questionnaires validated for use in cancer (EORTC QLQ C30 & EQ-5D), and disease-specific questionnaires for survivors of multiple myeloma (MY-20) and chronic lymphocytic leukaemia (CLL-16). The second qualitative phase explored in-depth the quantitative findings. For both the quantitative and qualitative phases, participants were adults aged 18+ years who had completed treatment for a haematological malignancy and were between 1-5 years post-treatment. Demographic data and clinical parameters collected included diagnosis and time since completion of treatment. Descriptive statistics showed that the median and interquartile range when skewed. Age was the only skewed continuous variable. Non-parametric Kendall’s tau correlation coefficient was used to determine the associations between age and QoL and associations between socio- demographic, clinical factors and QoL subscales were determined using the Mann Whitney U test. Furthermore, in-depth face-to-face semi-structured interviews were conducted, thematically analysed and grounded in the quantitative findings. Results: For the quantitative survey 131 participants completed questionnaires (response rate 66%). The median age was 66 years. The quantitative phase found significant associations between age, global quality of life, physical and role functioning. Men reported better physical functioning and lower symptom scores than women. Employed participants reported a better QoL. Increasing age was associated with lower QoL. Better role functioning was noted in participants who lived beyond 2.5 years following treatment completion. The key qualitative findings centred on unmet supportive care needs, fear of recurrence, loss of continued connection with health care providers and uncertainty about the future. Conclusion: Survivors of haematological malignancies have unmet supportive care needs. Enhancing their physical, psychological wellbeing and addressing supportive care needs optimises their QoL.