Health-related quality of life when dealing with acute lymphoblastic leukemia

Introduction: In the past a diagnosis of acute lymphoblastic leukaemia (ALL) meant a certain fatality. However, over the last decades the five-year survival rate in treatment for adults has increased to approximately 45%. During and after treatment patients are confronted with possible physical, emotional, and behavioural side effects. The aim of this study was to investigate the health-related quality of life (HRQoL) and factors associated with the HRQoL of ALL patients. Methods: Based on two theoretical models (Wilson & Cleary 1995; Holland 2002) a HRQoL model was developed, so a comparison could be made with both the literature review and the explorative study. The literature review in PubMed was performed to reproduce studies considering HRQoL of ALL patients. The explorative study was based on a paper questionnaire, including validated generic and disease specific questionnaires. Respondents were selected at the Erasmus Medical Centre based on inclusion in HOVON studies. Non-parametric tests were performed to find variables associated with a change in HRQoL. Results: Twelve studies met the criteria for the literature review. Three studies described the HRQoL of the ALL population and nine studies compared the HRQoL of the ALL population with an ALL-free population. Overall when treatment has been finished, the study population had a similar or better HRQoL than the ALL-free population. Comparison with a norm population gave a higher HRQoL than comparison with a control population. The study population had a worse HRQoL during treatment when compared to the ALL-free population. Studies with an older population had a better score than studies with a younger population. Most studies in the literature review did not detect factors associated with changes in HRQoL. Nineteen respondents returned their questionnaire for the explorative study. Significant differences (p<0.05) with the Dutch norm population were found for physical functioning, role functioning, social functioning, fatigue, dyspnoea, and financial difficulties. Factors significantly associated (p<0.05) with a lower HRQoL within the ALL population were employment status, concurrent illnesses, marital status, coping with the disease, treatment, religion, fatigue, and a patient-physician relationship. Conclusion: The HRQoL model was not verified by the literature review, while the explorative study showed some significant associations between the independent variables in the conceptual model and the HRQoL. This conceptual model was possibly applicable to ALL patients based on the results of the explorative study, but should be studied more in-depth in future research. The different outcomes of both types of studies were hard to compare, as these populations were diagnosed at a different age. The small study population in the explorative study might cause the lack of significant effects on HRQoL. Better or similar scores than the general population in the literature review might be caused by the survivors’ subjective perceptions, causing a response shift. The small effects found in this study require in-depth investigation in larger groups. It should be attempted to focus more on factors associated with a worse HRQoL, so patients receive the optimal treatment and support. Long and very long-term effects should be investigated by following patients for more than twenty years after diagnosis. Preventing and minimising late effects of the disease will improve the HRQoL in survivors of ALL, particularly in those who were declared disabled, experienced concurrent illnesses, were not able to cope with the disease, and experienced fatigue.