Pain and emozional distress in hematological patients throughout all phases of disease: results from a multidisciplinary research team in Modena University Hospital

Background: According to some outdated reports, physical pain has been considered for many years a rare feature in the majority of blood malignancies, especially in acute leukemias, with the exception of advanced and terminal phases of disease. Unlike myeloma and lymphoma, there are few published data regarding the frequency of pain in patients with leukemia. Based on the modern concept of total cancer pain and on the importance of patient-reported outcomes, routine symptom assessment for hematologic patients should include, together with pain, even emotional distress, expressed in terms of anxiety and depression. Aims: In order to investigate prevalence and clinical relevance of pain and emotional distress in patients with acute myeloid (AML) and lymphoid (ALL) leukemia referred to our center, a multidisciplinary team consisting of nurses, physicians and psychologists has adopted two validated tools in the daily clinical practice: NRS (Numeral Rating Scale) and HADS (Hospital Anxiety and Depression Scale). ESAS (Edmonton Symptom Assessment System) has been compared with HADS with the aim to evaluate its diagnostic accuracy. Methods: NRS, HADS and ESAS scales were administered to newly diagnosed AML and ALL patients at diagnosis (T0), during the neutropenic phase (T15) and at discharge (T30), throughout hospital admissions and different phases of treatment. According to NRS scale pain intensity was classified as absent (0), mild (1-3), moderate (4-6) or severe (7-10). HADS is 14-item scale given by 7 ques- tions related to anxiety and 7 to depression, determining a score from 0 to 21. ESAS is a multiple-item visual analogue scale from 0 to 10. Anxiety and depression were considered positive with HADS 8 and ESAS 2 or more. Sensitivity and specificity tests were also performed. Results were mainly focused on induction phase, bone marrow transplation (BMT) and home care. Results: From June 2007 to December 2011 137 patients with AML and ALL were enrolled in the study (AML=109, ALL=28, M=85, F=52, median age=60). Another cohort of 31 patients referred to the home care program and affected by several blood disorders (NHL=8, MM=6, AML=5, MF=3, ITP=2, MDS=2, AA=1, ALL=1, CLL=1, CML=1, ET=1) was evaluated in parallel (M=18, F=13, median age=79) on monthly basis. 842 questionnaires were collected in the AML-ALL group. At diagnosis pain was reported in 46.2% of cases (mild=30.3%, moderate-severe=15.9%). The highest prevalence and intensi- ty of pain was observed in post-BMT neutropenic phase associated to mucositis (overall pain=61.5%, severe=30.8%). At diagnosis anxiety scores were positive in 33.6% for HADS and 51.1% for ESAS, while depression was present in 22.4% and 42.4% of cases, respectively. A higher prevalence of anxiety and depression was documented at T15 both in induction and post-BMT phases. Considering all HADS questionnaires anxiety and depression were positive in 26.7% and 25.2% of cases, respectively (10% with HADS from 11 upward, accounting for more severe symptoms), while an ESAS score of 2 or more was reported in 36.5% (anxiety) and 31.9% (depression) of cases. In the home care group pain was reported in 78 of all 157 questionnaires (overall pain=49.7%, mild=26.1%, moderate-severe=23.6%). Anxiety and depression were positive in 31.2% and 45.2% of HADS and in 45.9% and 49% of ESAS questionnaires, respectively. Overall test accuracy of ESAS (score of 2 or more) was 77.5% for anxiety and 76.4% for depression. Summary and Conclusions: Pain, anxiety and depression are common symptoms in a significant proportion of acute leukemia patients, impacting quality of life, clinical decisions and outcomes. Compared with HADS, ESAS showed adequate diagnostic accuracy in screening for anxiety and depression, and could be an excellent candidate for large-scale and routine assessment of physical pain, emotional distress and other symptoms, at diagnosis and during the active phase of disease. Some issues remain open, such as the identification of appropriate cut-offs for ESAS and the development of strategies to implement a sustainable integration of early interventions of palliative care in hematology units and to prevent/reduce the burden of physical symptoms and emotional distress.