Coping with Pain in the Face of Healthcare Injustice in Patients with Sickle Cell Disease

Abstract

To evaluate the pain coping strategies of patients with sickle cell disease (SCD) who experience healthcare injustice from either physicians or nurses during medical visits for pain management. It is unknown how patients’ coping with pain relates to their experiences of healthcare injustice from physicians or nurses. This descriptive comparative study included adult outpatients with SCD who completed the PAINReportIt®, Healthcare Justice Questionnaire©, and Coping Strategies Questionnaire-SCD. Data were analyzed using independent t tests. Frequent coping strategies of patients who experienced healthcare justice from physicians were praying-hoping and from nurses were praying-hoping, calming self-statements, diverting attention, and increasing behavioral activity. In contrast, frequent coping strategies of patients who experienced healthcare injustice from physicians were catastrophizing and isolation and from nurses were isolation. Patients who experienced healthcare justice used different sets of pain coping strategies than those who experienced healthcare injustice during medical visits for pain management.

<p>Patient-Reported Outcomes and Economic Burden of Adults with Sickle Cell Disease in the United States: A Systematic Review</p>

“…The key characteristics of the seven studies 6,[20][21][22][23][24][25][26][27][28][29] are presented in Table 1 and key results can be found in Figure 2. Six studies were cross-sectional [20][21][22][27][28][29] and one was a prospective observational study (with four related publications).…”

“…The key characteristics of the seven studies 6,[20][21][22][23][24][25][26][27][28][29] are presented in Table 1 and key results can be found in Figure 2. Six studies were cross-sectional [20][21][22][27][28][29] and one was a prospective observational study (with four related publications). 6,[23][24][25][26] Some studies reported multiple outcomes, with five studies evaluating patients' HRQL, 20,22,23,27,28 four assessing depression and/or anxiety, 22,23,28,29 two studies evaluating coping style, and one study each assessing sleep quality, 29 pain, stress, social support, and social interaction.…”

“…Evidence from three studies showed that adult patients with SCD who used opioids or alcohol or who perceived health care injustice appeared to employ different pain coping strategies than those who did not, as measured using the Coping Strategy Questionnaire (CSQ) or the CSQ-SCD. 21,24,26 The PiSCES study reported that there were no significant differences in the use of active or positive coping styles (p = 0.059 and p = 0.312, respectively) between opioid and non-opioid users. There were, however, significant differences in using negative coping styles, with more opioid users adopting this style compared to those who did not use opioids (p = 0.008).…”

“…22,23,28 Two studies assessed the impact of SCD HRQL (SF-36 20,22,23,26,28 Depression (PHQ 23,25 , PHQ-9 22,28 , BDI-II 29 ) Anxiety (PHQ 25 , GAD-7 22,28 ) Coping strategy (CSQ-SCD) 21 Stress (Sickle cell stress) 26 Sleep disturbance (PSQI) 29 Positive impact on PRO are noted in green shaded box Negative impact on PRO are noted in red shaded box Positive inter-relationship between PROs (e.g., sleep disturbance and depression were positively correlated) Negative inter-relationship between PROs (e.g., SF-36 scores were significantly lower for depressed patients than those who were not) Opioid use 20,26 Hydroxyurea 20 Sickle cell disease 27,29 Healthcare injustice from physician or nurse 21 ≥ 90 MME vs. < 90 MME daily opioid dose 22 High somatic symptom burden 25 on patient's coping strategy, depression, and sleep quality without reporting on HRQL. 21,29 Pain The PiSCES study prospectively evaluated pain using daily diaries in adults with SCD. 6,[23][24][25][26] The study reported that 54% of SCD patients had pain on more than half of total patient-days, confirming considerable levels of pain persist in a substantial proportion of patients with SCD.…”

Outpatient pain clinic and intranasal fentanyl to improve sickle cell disease outcomes

“…There are several potential reasons for this lower rate of admission to explore in future prospective studies. Recent data are emerging on the association of perceived injustice or stress impacting pain outcomes 11,12 . Pain management in the outpatient sickle cell clinic from known sickle cell nurses and providers may have contributed to the reduction in hospitalization.…”