Pain over time and its effects on life in thalassemia

Abstract

Pain reports have become increasingly common and problematic in thalassemia. As patients are living longer, there is a growing need to study pain and explore its impact on patient lives. The Brief Pain Inventory (BPI) was used quarterly to assess pain and pain interference in North American thalassemia patients. The SF-36 and HADS were used to assess quality of life, anxiety, and depression. Of the 252 participants, 56% reported pain at least once over the course of this study, with 32% reporting severe pain (≥7/10); 16% reported pain at all 4 visits. Increased pain severity significantly interfered with daily life (p<0.001; regression analysis), and participants with more sites of pain showed an increase in the amount of daily activities affected by pain (p=0.001). Participants reporting more visits with pain reported a significantly higher impact on affective and physical function (p <0.001). Physical quality of life decreased with increasing numbers of visits with pain (p <0.001). Those who reported one or more sites of pain showed increased symptoms of both depression (p <0.001) and anxiety (p= 0.003). Participants reporting at least two visits with pain had higher symptoms of anxiety (p= 0.002), and those with at least three visits, higher symptoms of depression (p= 0.003). Pain in thalassemia is a common, often chronic condition that interferes with life. The study highlights the significance of pain in thalassemia and its impact should be considered in future research and treatments.

The changing epidemiology of the ageing thalassaemia populations: A position statement of the Thalassaemia International Federation

“…Thirty‐seven per cent of patients, report having pain during the past 7 days, while 64% report having pain over the past 4 weeks 49 . Pain seems to interfere with all measures of life activities and to influence the quality of life 50 . The most common site is the lower back, although many patients report pain in various sites, such as legs, upper back or head.…”

Reduced Physical Activity Patterns In Patients With Thalassemia Compared To Healthy Controls

“…Chronically low hemoglobin (Hb) levels, either in non-transfusion dependent patients or prior to-transfusion have been associated with reduced exercise performance 2,3 . Along with reduced hemoglobin, pain 4 , depression 5,6 , and particularly for children, overprotective parenting can result in reduced physical activity for many patients with…”

Assessment and treatment of pain in thalassemia

“…The same investigators later reported on the impact of pain on QoL in a subgroup of participants who also completed the SF‐36 and Hospital Anxiety and Depression Scale (HADS) questionnaires (Fig. ) . The mean scores for most parameters worsened with increasing pain.…”