Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease

Abstract

IntroductionAcute pain is a hallmark of sickle cell disease (SCD) for which frequent hospital admissions may be required, affecting the quality of life of patients.ObjectivesTo characterise the relationship between adult patient self-reported sickle cell pain, mood and quality of life during and after hospital admissions.DesignLongitudinal study across three time-points.SettingSecondary care, single specialist sickle cell centre.Participants510 adult patients with SCD admitted to hospital daycare or inpatient units.Outcome measuresSelf-assessments of pain, mood and health-related quality of life with health utility (measured on the EQ-5D) on admission, before discharge and at 1-week postdischarge.ResultsMood, general health and quality of life showed significant steady improvements with reduction of pain in patients with SCD on admission to hospital, before discharge and at 1-week follow-up (p<0.01). Health utility scores derived from the EQ-5D showed a negative association with pain in regression analysis over the three time-points.ConclusionExamining health-related quality of life and health utility in relation to pain during hospital admissions is valuable in terms of targeting appropriate psychological interventions within the context of a multidisciplinary approach to managing sickle cell pain. This has implications for healthcare costs.

The Effectiveness of Self Management Program on Pain, Fatigue, Depression, Anxiety, and Stress in Sickle Cell Patients: A Quasi-Experimental Study

“…Extant research has found that adolescents and young adults with SCD suffer from mild to moderate fatigue, and that high levels of fatigue are associated with increased depression, anxiety, stress, sleep disorder, chronic pain, and loss of activities of daily life and quality of life (11,34). Other research has found a relationship between pain and psychiatric disorder, and has demonstrated that reduced pain is associated with significant improvements in general health, quality of life, and mood disorder in SC patients (3,15). Bakri et al (10) found that patients with SCD and who had history of repeated hospitalization are at an increased risk of developing behavioral problems and psychiatric disorders, including depression and anxiety.…”

“…By contrast, the present study considered pain as a cause of acute fatigue, and the basic problem facing patients; pain management was therefore carried out as a central aim of the intervention. Extant research has argued that pain reduction may significantly improve general health, quality of life, mood disorder (15), and fatigue (11) in patients with SCD. This study's findings indicate that self-management programs may ameliorate fatigue, depression, anxiety, stress, and the frequency and duration of pain, in patients with SCD.…”

“…That study reported that psychological counseling, social support, and proper pain management may minimize these consequences. Many other studies have emphasized the ability of disease and pain management to reduce the level of mental disorder and improve quality of life in these patients (15,20,21).…”

“…In managing serious and unpredictable complications, patients with SCD suffer numerous psychosocial problems such as reduced self-esteem, feelings of frustration (7), depression (7)(8)(9), anxiety and stress (8), and disruption of interpersonal relationships (10); these often lead to fatigue (11)(12)(13)(14) and poor quality of life (13,(15)(16)(17) in these patients. Bakri et al (10) showed that depression, anxiety and stress are prevalent in SC patients compared with healthy subjects.…”

Fentanyl Buccal Tablet: A New Breakthrough Pain Medication in Early Management of Severe Vaso‐Occlusive Crisis in Sickle Cell Disease

“…Pain is the main symptom of VOCs, and its management is still a challenge for hematologists, requiring a multidisciplinary approach . Although protocols for control of acute pain in SCD have been developed in the last decade, SCD patients still feel undertreated . Different mechanisms are involved in pain generation during VOCs: (i) the ischemic/reperfusion injury and activation of inflammatory response; (ii) the local release of sensitizing mediators, contributing to local vasodilation and edema; (iii) the neuropathic component sustained by an aberrant stimulation of central and peripheral nervous system .…”