Abstract
BACKGROUND: Sickle cell disease (SCD) patients can receive their ambulatory care from either SCD specialists (caregivers with sickle cell-only clinics) or nonspecialized care centers. Patient satisfaction, an important factor that may influence compliance and outcome, can differ between the two groups because of the perceived quality of care, outcomes or practice style. METHODS: We administered a patient satisfaction survey to 308 participants in an SCD prospective cohort study. Of the 308 patients, 133 (43.2%) received the majority of their SCD care at specialized centers, 152 (49.3%) received their care from nonspecialized centers and 26 (7.5) did not provide information. The satisfaction surveys measured general satisfaction (GS), technical quality (TQ), interpersonal manner (IM), communication (CM), financial aspects (FA), time spent with doctor (TA), and accessibility and convenience (AC). Patients reported their levels of satisfaction using a five-point Likert scale. We compared unadjusted group means, as well as means adjusted for potential confounders such as marital status, on patient satisfaction between specialized and nonspecialized centers. RESULTS: SCD patients who received their care from specialized centers had significantly higher mean satisfaction scores, compared to those who received their care from nonspecialized centers: GS 4.00(+/-0.93) vs. 3.66 (+/- 01.16, p=0.0326), TQ 3.98 (+/- 0.77) vs. 3.65 (+/- 0.91, p=0.0058), AC 3.83 (+/-0.79) vs. 3.51 (+/- 1.02, p=0.0142) , FA 3.88 (+/-0.96) vs. 3.49 (+/-1.25, p=0.0120). There were no statistically significant group differences in IM, TA and CM. CONCLUSION: SCD patients who received most of their SCD care from specialized centers had somewhat higher satisfaction scores in some areas when compared with patients who received their care from nonspecialized centers.
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- Birkmeyer John D., Siewers Andrea E., Finlayson Emily V. A., Stukel Therese A., Lucas F. Lee, Batista Ida, Welch H. Gilbert, Wennberg David E. Hospital volume and surgical mortality in the United States. N Engl J Med. 2002 Apr 11;346(15):1128–1137. doi: 10.1056/NEJMsa012337. [DOI] [PubMed] [Google Scholar]
- Blumenthal D. Part 1: Quality of care--what is it? N Engl J Med. 1996 Sep 19;335(12):891–894. doi: 10.1056/NEJM199609193351213. [DOI] [PubMed] [Google Scholar]
- Bobo L., Miller S. T., Smith W. R., Elam J. T., Rosmarin P. C., Lancaster D. J. Health perceptions and medical care opinions of inner-city adults with sickle cell disease or asthma compared with those of their siblings. South Med J. 1989 Jan;82(1):9–12. doi: 10.1097/00007611-198901000-00004. [DOI] [PubMed] [Google Scholar]
- De Berardis Giorgia, Pellegrini Fabio, Franciosi Monica, Belfiglio Maurizio, Di Nardo Barbara, Greenfield Sheldon, Kaplan Sherrie H., Rossi Marie C. E., Sacco Michele, Tognoni Gianni. Quality of care and outcomes in type 2 diabetic patients: a comparison between general practice and diabetes clinics. Diabetes Care. 2004 Feb;27(2):398–406. doi: 10.2337/diacare.27.2.398. [DOI] [PubMed] [Google Scholar]
- Dudley R. A., Johansen K. L., Brand R., Rennie D. J., Milstein A. Selective referral to high-volume hospitals: estimating potentially avoidable deaths. JAMA. 2000 Mar 1;283(9):1159–1166. doi: 10.1001/jama.283.9.1159. [DOI] [PubMed] [Google Scholar]
- Elander James, Lusher Joanne, Bevan David, Telfer Paul, Burton Bernice. 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 Feb;27(2):156–169. doi: 10.1016/j.jpainsymman.2003.12.001. [DOI] [PubMed] [Google Scholar]
- Elander James, Lusher Joanne, Bevan David, Telfer Paul. Pain management and symptoms of substance dependence among patients with sickle cell disease. Soc Sci Med. 2003 Nov;57(9):1683–1696. doi: 10.1016/s0277-9536(02)00553-1. [DOI] [PubMed] [Google Scholar]
- Farber M. D., Koshy M., Kinney T. R. Cooperative Study of Sickle Cell Disease: Demographic and socioeconomic characteristics of patients and families with sickle cell disease. J Chronic Dis. 1985;38(6):495–505. doi: 10.1016/0021-9681(85)90033-5. [DOI] [PubMed] [Google Scholar]
- Frempong Tamiesha, Pearson Howard A. Newborn screening coupled with comprehensive follow-up reduced early mortality of sickle cell disease in Connecticut. Conn Med. 2007 Jan;71(1):9–12. [PubMed] [Google Scholar]
- Hillner B. E., Smith T. J., Desch C. E. Hospital and physician volume or specialization and outcomes in cancer treatment: importance in quality of cancer care. J Clin Oncol. 2000 Jun;18(11):2327–2340. doi: 10.1200/JCO.2000.18.11.2327. [DOI] [PubMed] [Google Scholar]
- INGRAM V. M. A specific chemical difference between the globins of normal human and sickle-cell anaemia haemoglobin. Nature. 1956 Oct 13;178(4537):792–794. doi: 10.1038/178792a0. [DOI] [PubMed] [Google Scholar]
- Murray N., May A. Painful crises in sickle cell disease--patients' perspectives. BMJ. 1988 Aug 13;297(6646):452–454. doi: 10.1136/bmj.297.6646.452. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Nietert Paul J., Silverstein Marc D., Abboud Miguel R. Sickle cell anaemia: epidemiology and cost of illness. Pharmacoeconomics. 2002;20(6):357–366. doi: 10.2165/00019053-200220060-00001. [DOI] [PubMed] [Google Scholar]
- O'Brien K. L., Swift A. J., Winkelstein J. A., Santosham M., Stover B., Luddy R., Gootenberg J. E., Nold J. T., Eskenazi A., Snader S. J. Safety and immunogenicity of heptavalent pneumococcal vaccine conjugated to CRM(197) among infants with sickle cell disease. Pneumococcal Conjugate Vaccine Study Group. Pediatrics. 2000 Nov;106(5):965–972. doi: 10.1542/peds.106.5.965. [DOI] [PubMed] [Google Scholar]
- Okpala Iheanyi, Thomas Veronica, Westerdale Neil, Jegede Tina, Raj Kavita, Daley Sadie, Costello-Binger Hilda, Mullen Jean, Rochester-Peart Collis, Helps Sarah. The comprehensiveness care of sickle cell disease. Eur J Haematol. 2002 Mar;68(3):157–162. doi: 10.1034/j.1600-0609.2002.01523.x. [DOI] [PubMed] [Google Scholar]
- Platt O. S., Brambilla D. J., Rosse W. F., Milner P. F., Castro O., Steinberg M. H., Klug P. P. Mortality in sickle cell disease. Life expectancy and risk factors for early death. N Engl J Med. 1994 Jun 9;330(23):1639–1644. doi: 10.1056/NEJM199406093302303. [DOI] [PubMed] [Google Scholar]
- Powars D. R., Chan L. S. Is sickle cell crisis a valid measure of clinical severity in sickle cell anemia? Prog Clin Biol Res. 1987;240:393–402. [PubMed] [Google Scholar]
- Serjeant G. R. Sickle-cell disease. Lancet. 1997 Sep 6;350(9079):725–730. doi: 10.1016/S0140-6736(97)07330-3. [DOI] [PubMed] [Google Scholar]
- Smith T. J., Hillner B. E. Ensuring quality cancer care by the use of clinical practice guidelines and critical pathways. J Clin Oncol. 2001 Jun 1;19(11):2886–2897. doi: 10.1200/JCO.2001.19.11.2886. [DOI] [PubMed] [Google Scholar]
- Smith Thomas J., Hillner Bruce E., Bear Harry D. Taking action on the volume-quality relationship: how long can we hide our heads in the colostomy bag? J Natl Cancer Inst. 2003 May 21;95(10):695–697. doi: 10.1093/jnci/95.10.695. [DOI] [PubMed] [Google Scholar]
- Smith Wally R., Bovbjerg Viktor E., Penberthy Lynne T., McClish Donna K., Levenson James L., Roberts John D., Gil Karen, Roseff Susan D., Aisiku Imoigele P. Understanding pain and improving management of sickle cell disease: the PiSCES study. J Natl Med Assoc. 2005 Feb;97(2):183–193. [PMC free article] [PubMed] [Google Scholar]
- Steinberg M. H. Review: sickle cell disease: present and future treatment. Am J Med Sci. 1996 Oct;312(4):166–174. doi: 10.1097/00000441-199610000-00004. [DOI] [PubMed] [Google Scholar]
- Vichinsky E. P. Comprehensive care in sickle cell disease: its impact on morbidity and mortality. Semin Hematol. 1991 Jul;28(3):220–226. [PubMed] [Google Scholar]
- Wethers D. L. Sickle cell disease in childhood: Part I. Laboratory diagnosis, pathophysiology and health maintenance. Am Fam Physician. 2000 Sep 1;62(5):1013-20, 1027-8. [PubMed] [Google Scholar]
- Yang Y. M., Shah A. K., Watson M., Mankad V. N. Comparison of costs to the health sector of comprehensive and episodic health care for sickle cell disease patients. Public Health Rep. 1995 Jan-Feb;110(1):80–86. [PMC free article] [PubMed] [Google Scholar]