AssessmentHealth care provider attitudes toward patients with acute vaso-occlusive crisis due to sickle cell disease: Development of a scale☆
Introduction
Persons with sickle cell disease (SCD) are vulnerable to suboptimal health care during vaso-occlusive crises (VOCs). In small qualitative studies, patients with SCD have consistently provided compelling personal stories about their own negative experiences during hospital treatment for pain, including inadequate analgesia, conflicts with staff, and lack of respect from providers [1], [2], [3].
Evidence suggests that variations in the quality of pain management are multifactorial, related to “behaviors of providers, patients, and health care organizations” [4]. The 2005 American Pain Society Quality Improvement Guidelines called for interventions toward five objectives: (1) recognizing and treating pain promptly, (2) involving patients in the pain management plan, (3) improving treatment patterns, (4) reassessing and adjusting the pain management plan as needed, and (5) monitoring processes and outcomes of pain management [4]. Thus, evidence-based guidelines place patient–provider communication and shared decision-making as central to the quality of pain management care.
Health care providers’ attitudes toward patients may be one contributing factor to the quality of communication and care that patients receive [5], [6], [7], [8]. In one study in the primary care setting, physicians with higher respect for particular patients demonstrated more positive communication behaviors in encounters with those patients [9]. However, less is known about the relationship between provider attitudes, the quality of patient–provider communication, and the quality of care for patients with VOC. In one national survey of physicians at NIH-funded comprehensive sickle cell centers, 40% of physicians believed that SCD patients are often undermedicated for pain, with concerns of drug abuse ranked as a top barrier to optimal management [10]. Other studies suggest that health professionals overestimate the prevalence of addiction among patients with SCD [11].
To understand how provider attitudes affect the quality of communication and care for patients with pain, investigators need tools to measure accurately and reliably the variations in provider attitudes. This may be particularly challenging because providers may be reluctant to acknowledge their own negative attitudes toward patients. To our knowledge, no studies have examined the validity or reliability of tools to measure attitudes toward patients with SCD-related pain. The purpose of our study was to develop a scale, assess its reliability and validity, and determine how patient and provider-level characteristics correlate with positive attitudes toward patients with VOC.
Section snippets
Study design
We developed an instrument to measure providers’ attitudes toward patients with SCD-related VOC, and then tested its reliability and validity in a cohort study of healthcare providers. We conducted a cohort study of adult patients with VOC and their health care providers at a mid-Atlantic, urban academic medical center, from September 2006 to June 2007. Eligible patients were adults age 18 or older with any sickle cell hemoglobinopathy (Hb SS, Hb SC, Hb S/alpha-thalassemia, or Hb
Participant characteristics
We collected 121 questionnaires from 84 health care providers about 47 patients presenting for 78 episodes of VOC. Among those approached for recruitment, patient response rate was 121/124 (98%) and provider response rate was 149/205 (73%).
Table 1 presents the participant characteristics. Patients averaged 30.3 years in age, 60% were women. Forty-three percent had at least some college education, and 26% were employed. Seventy percent had SS hemoglobinopathy, 77% had a history of acute chest
Discussion
In this cohort study, we found preliminary evidence for the validity and reliability of a questionnaire for measuring health care provider attitudes toward SCD patients with VOC. Providers reported a range of attitudes toward patients, with a moderate proportion of negative attitudes on individual items and summary scores representing the full possible spectrum of the scale. The high Cronbach's alpha provides support for both reliability and internal structure validity for PASS in this
Acknowledgements
This study was conducted with grant support from the Johns Hopkins Blaustein Pain Research Fund. The funding agency did not have a role in the design, conduct, or reporting of the study. The authors have no conflicts of interest to disclose.
References (47)
- et al.
Liking in the physician–patient relationship
Patient Educ Couns
(2002) Perceived likeability and competence of simulated patients: influence on physicians’ management plans
Soc Sci Med
(1984)- et al.
Are physicians’ attitudes of respect accurately perceived by patients and associated with more positive communication behaviors?
Patient Educ Couns
(2006) - et al.
Nurses’ attitudes and practices in sickle cell pain management
Appl Nurs Res
(2001) - et al.
Pain management and symptoms of substance dependence among patients with sickle cell disease
Soc Sci Med
(2003) - et al.
Sickle cell-related pain: perceptions of medical practitioners
J Pain Symptom Manage
(1997) - et al.
Health professional perceptions of opioid dependence among patients with pain
Am J Emerg Med
(1995) - et al.
The effect of patient race and socio-economic status on physicians’ perceptions of patients
Soc Sci Med
(2000) - et al.
The difficult doctor–patient relationship: somatization, personality and psychopathology
J Clin Epidemiol
(1994) - et al.
Understanding the causes of problematic pain management in sickle cell disease: evidence that pseudoaddiction plays a more important role than genuine analgesic dependence
J Pain Symptom Manage
(2004)
Dealing with difficult patients in your pain practice
Reg Anesth Pain Med
Hospital discharge against advice after myocardial infarction: deaths and readmissions
Am J Med
The management of sickle cell crisis pain as experienced by patients and their carers
J Adv Nurs
Painful crises in sickle cell disease—patients’ perspectives
Br Med J
Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study
Br Med J
American Pain Society recommendations for improving the quality of acute and cancer pain management: American Pain Society Quality of Care Task Force
Arch Intern Med
Meta-analysis of correlates of provider behavior in medical encounters
Med Care
Effective physician–patient communication and health outcomes: a review
CMAJ
Physicians’ attitude and practices in sickle cell disease pain management
J Palliat Care
Factors affecting hospital staff judgments about sickle cell disease pain
J Behav Med
Communication skills and cultural awareness courses for healthcare professionals who care for patients with sickle cell disease
J Adv Nurs
Primary care provider concerns about management of chronic pain in community clinic populations
J Gen Intern Med
Haemoglobinopathies and healthcare provision for ethnic minorities
Br J Nurs
Cited by (49)
Attitudes and Beliefs of Nurses and Nurse Assistants toward Patients with Sickle Cell Disease: A Mixed Methods Study
2023, Pain Management NursingStructural Racism and Impact on Sickle Cell Disease: Sickle Cell Lives Matter
2022, Hematology/Oncology Clinics of North AmericaCitation Excerpt :It is no wonder that Patients with SCD have problems holding a job,56 feel stigmatized25,57 and are discriminated against at their jobs or for employment, and are viewed as lazy,58 as drug addicts or drug seeking,59 and as “difficult” rather than “vulnerable”.60,61 It is no wonder that clinicians, including adult medicine subspecialists, HU physicians and primary care physicians, may prefer not to care for adults with SCD,62 or may feel uncomfortable and incompetent caring for them.63,64 It is no wonder that Patients with SCD may feel that their SCD care is problematic, especially when they are seen in the ED or hospital,65 may feel unwelcome and untrusted, or may not trust their providers to give them appropriate care.66
Chronic Pain: Prevalence and Management
2022, Hematology/Oncology Clinics of North AmericaOpioid treatment for acute and chronic pain in patients with sickle cell disease
2020, Neuroscience LettersCitation Excerpt :Patients with SCD tend to report high levels of stigma and problematic interactions with health care providers [11,135–137]. Direct surveys of providers tend to corroborate that impression, with relatively negative attitudes and high levels of suspicion for addiction or aberrant drug-related behavior137,138]. As previously noted, most patients manage most crises at home and hospitalization for crisis is in fact a relatively rare event for most patients with SCD[4,12,14]; likely occurring once every two years for the “typical” (median) patient.
Issues and difficulties in the relationship between patients and caregivers in painful sickle cell vaso-occlusive crisis
2016, Revue de Medecine Interne
- ☆
I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.