Pain rate and social circumstances rather than cumulative organ damage determine the quality of life in adults with sickle cell disease

International audienceBackground: Due to the significant morbidity associated with sickle cell disease (SCD) sickle cell patients have a reduced quality of life (QoL). Even though pain is considered an important determinant of QoL in sickle cell patients, factors such as chronic organ damage and socioeconomic circumstances may also be important. Therefore we determined the contribution of chronic organ damage and sickle cell related complications to QoL and also analysed the effect of vaso-occlusive crises and socio-economic circumstances on QoL in our patients. Methods: Consecutive adult sickle cell patients were included. QoL was represented in a physical component scale (PCS) and a mental component scale (MCS) and was assessed with SF-36 forms. We studied these QoL scores in relation to SCD severity (organ damage and pain rate) and socioeconomic factors (patients occupation and educational level). Results: Higher pain rates were related to lower QoL scores. Pain rate was significantly associated with MCS but not with the PCS. Both occupation and the level of education were significantly related to PCS while no relation with MCS or pain rate was found. Thirty-five percent patients were unemployed as compared to 6% of the general population and 16% of immigrants without SCD. Neither genotype nor the presence of chronic organ damage were significantly related to QoL. Conclusion: Sickle cell patients in Amsterdam, the Netherlands, have a significantly reduced QoL mainly determined by pain rate, occupation and educational level. Chronic organ damage, although a major factor determining life expectancy in SCD, was not a determinant of QoL

Daily pain in adults with sickle cell disease-a different perspective

Previous reports demonstrated that patients with sickle cell disease (SCD) experience pain on more than half of the observed days. Yet, these high incidences do not seem to match observations in our population. In this prospective cohort study, we aimed to assess the frequency and characteristics of daily, self-reported pain among adult SCD patients in the Netherlands. Consecutive patients were enrolled during routine outpatient visits and followed up to 6 months. A total of 55 patients completed 5,982 diary observation days. Median age was 27 years (IQR 23-43). Patients reported SCD related pain on 17% of the observed days; on 13% of these days this pain was not defined as a painful crisis, while 3% was reported as a painful crisis but managed at home, and on 1% of the observed days patients were admitted to the hospital. Analgesics were used on 52% of days with pain with a relatively infrequent use of oral opioids (9% of pain days). This first European study on pain in SCD indicates that pain appears to be significantly less frequent in our population as compared to previous study cohorts from the United States, and may be more representative for current SCD populations in other Western countries. Besides a more widespread use of hydroxycarbamide in modern disease management, differences in organization and accessibility of healthcare between countries may also explain this discrepanc

Changing Stress Mindset Through Stressjam: A Virtual Reality Game Using Biofeedback

Objective: A range of recent studies suggest that overall mindset about stress is related to health, performance, and well-being. Therefore, an exploratory study was conducted to examine whether virtual reality (VR) with real-time biofeedback would have potential in training people in an engaging way to develop a new stress-is-enhancing mindset. Materials and Methods: The specific application to improve people's stress mindset that was used in this study is Stressjam. The application was tested on its attractiveness by 111 healthy participants, specifically on their personal involvement through the Personal Involvement Inventory and its usability through the System Usability Scale. In addition to the healthy participants, a group of 64 patients dealing with stress used Stressjam for at least three sessions. The Stress Mindset Measure was used to assess the stress mindset of both groups, at baseline and after finishing their session(s). Results: Stressjam appears to be an application that is user friendly with good user involvement. The healthy participants and the patient sample both had a more positive stress mindset after using the application than at baseline, t(111) = 4.38, P < 0.001, and F(1,63) = 66.57, P < 0.001, respectively. Conclusion: The results of this study give some indications that using VR with biofeedback might be useful in working toward a more positive stress mindset. As such, further research into applications such as Stressjam is warranted

Patient-controlled analgesia versus continuous infusion of morphine during vaso-occlusive crisis in sickle cell disease, a randomized controlled trial

Intravenous morphine is the treatment of choice for severe pain during vaso- occlusive crisis in sickle cell disease (SCD). However, side effects of morphine may hamper effective treatment, and high plasma levels of morphine are associated with severe complications such as acute chest syndrome. Furthermore, adequate dosing remains a problem since no objective measurement of pain severity exists and analgesia should be titrated upon the patient's reported pain. Patient-controlled analgesia (PCA) may therefore be an interesting alternative since patients can titrate the level of analgesia themselves. In this randomized controlled study, the efficacy of intravenous morphine administration with PCA was compared with continuous infusion (CI) of morphine in patients with SCD during vaso-occlusive crisis. Twenty five consecutive episodes of vaso-occlusive crisis in 19 patients with SCD were included in the study. Patients in the PCA-group had a markedly and significant lower mean and cumulative morphine consumption when compared with the patients in the CI-group (0.5 mg/hr versus 2.4 mg/hr (P < 0.001) and 33 mg versus 260 mg (P = 0.018, respectively). The mean daily pain scores were comparable (4.9 versus 5.3). The lower mean and cumulative morphine consumption in the PCA-group led to significant less nausea and constipation during treatment when compared with the CI-group (area under the curve, respectively, 11 versus 18 (P = 0.045) and 30 versus 45 (P = 0.021). Furthermore, a nonsignificant reduction in the duration of hospital admission of 3 days was observed in the PCA-group. PCA results in adequate pain relief at a much lower morphine consumption and should considered to be the first choice in morphine administration to sickle cell patients admitted with vaso-occlusive crisi