istics and site of care to the perception of ambulatory care quality by persons with AIDS (PWAs). DESIGN: Patient surveys and medical record review were used.
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ORIGINAL ARTICLES
Satisfaction with Ambulatory Care of Persons with AIDS: Predictors of Patient Ratings of Quality Valerie E, Stone, MD, MPH, Joel S. Weissman, PhD, Paul D. Cleary, PhD
O B J E C T I V E : To e x a m i n e the relation o f patient characteristics and site o f care to t h e perception o f a m b u l a t o r y care quality by persons w i t h A I D S (PWAs). D E S I G N : Patient surveys and medical record review were u s e d
to determine PWAs' p e r c e p t i o n s o f their a m b u l a t o r y care, self-pereeived h e a l t h s t a t u s , primary care r e l a t i o n s h i p s , sociodemographic characteristics, and severity o f illness. S E T T I N G " A p u b l i c - h o s p i t a l HIV clinic, a n a c a d e m i c group
C O N C L U S I O N S : These results s h o w that primary nursing m a y be an important d e t e r m i n a n t o f h o w PWAs rate the quality of their ambulatory care. Furthermore, PWAs w h o are black or w h o are injection drug u s e r s are less satisfied t h a n are others w i t h the quality of their a m b u l a t o r y AIDS care. K E Y W O R D S - AIDS; HIV; quality of care; patient satisfaction;
primary n u r s e . J GEN INTERN MED 1 9 9 5 ; 1 0 " 2 3 9 - - 2 4 5 .
practice, and a staff-model h e a l t h m a i n t e n a n c e organization (HMO) that together care for 20% of all M a s s a c h u s e t t s PWAs. P A T I E N T S : All active patients as of February 12, 1 9 9 0 , a n d
all new AIDS patients at e a c h of the three sites during the s u b s e q u e n t 13 m o n t h s . The primary outcome m e a s u r e w a s a six-item scale of patient-rated quality of care (PRQC), a n e w l y d e v e l o p e d m e a s u r e that c o m b i n e d patients' ratings of their p h y s i c i a n care, n u r s i n g care, involvement in m e d i c a l d e c i s i o n s , a n d overall quality of care. Multiple logistic regression w a s carried out w i t h l o w PRQC (lowest quartile) as the d e p e n d e n t variable, to identify correlates o f patient perceptions of poor quality. Patients w h o h a d a primary nurse were significantly l e s s l i k e l y to h a v e l o w PRQC scores (OR = 0 . 5 0 , 95% CI = 0 . 2 6 to 0 . 9 7 ) . B l a c k patients and patients w h o u s e d i n j e c t i o n drugs were significantly more likely to rate their care in the l o w e s t quartile (OR = 2 . 2 2 , 95% CI = 1 . 9 4 to 4 . 7 8 ; a n d OR = 2 . 4 3 , 95% CI = 1 . 1 3 to 5 . 2 3 , respectively), as w e r e t h o s e w h o had lower self-perceived h e a l t h status, after controlling for c o n f o u n d e r s ; n o association w a s f o u n d by site or severity.
MEASUREMENTS AND MAIN RESULTS:
Received from the Section of General Internal Medicine, Department of Medicine, Boston City Hospital, Boston University School of Medicine (VES), the Division of General Medicine, Section of Health Services and Policy Research, Brigham and Women's Hospital (JSW, PDC), and the Department of Health Care Policy, Harvard Medical School (JSW, PDC). Boston. Massachusetts. Presented in part at the annual meeting of the Society of General Internal Medicine, April 30, 1993. Arlington, Virginia. Supported by the Agency for Health Care Policy and Research, grant number HS06239. Address correspondence and reprint requests to Dr. Stone: ACC Administration Office MN-OI, Boston City Hospital, 818 Harrison Avenue, Boston, MA 02118.
he t r e m e n d o u s i m p a c t of the HIV e p i d e m i c o n the
T health a n d quality of life of y o u n g adults i n the United States ~, 2 m a k e s it of p r e s s i n g i m p o r t a n c e to e x a m i n e the p a t i e n t care experiences of p e r s o n s living w i t h AIDS and symptomatic HIV disease. Experiences with the health care system are a very p r o m i n e n t feature i n the lives of those with AIDS, a n d m a y play a critical role i n determ i n i n g t h e i r h e a l t h o u t c o m e s . P a t i e n t s a t i s f a c t i o n increasingly is viewed as a critical i n d i c a t o r of the q u a l i t y of care. a- 13 It is also likely t h a t greater s a t i s f a c t i o n leads p a t i e n t s to become m o r e involved i n t h e i r care, i n c r e a s e s adherence to r e c o m m e n d e d t r e a t m e n t protocols a n d follow-up, a n d u l t i m a t e l y m a y improve h e a l t h s t a t u s . 3-5 Consequently, efforts to a s s e s s the q u a l i t y of care provided to p a t i e n t s w i t h AIDS s h o u l d i n c o r p o r a t e d a t a des c r i b i n g p a t i e n t s a t i s f a c t i o n i n a d d i t i o n to more traditional process a n d o u t c o m e m e a s u r e s of quality. The s p r e a d of the AIDS e p i d e m i c a m o n g diverse segm e n t s of the U.S. p o p u l a t i o n ~' 2. 14-16 m a k e s it i n c r e a s ingly i m p o r t a n t to explicitly a s s e s s the p a t i e n t care experiences of different groups of p e r s o n s with AIDS (PWAs), i n c l u d i n g w o m e n , p e r s o n s of color, i n j e c t i o n d r u g u s e r s , a n d those infected t h r o u g h h e t e r o s e x u a l contact. Previous s t u d i e s e x a m i n i n g s a t i s f a c t i o n w i t h m e d i c a l care a m o n g d e m o g r a p h i c s u b g r o u p s of general medical patients have yielded i n c o n s i s t e n t f i n d i n g s . 3. 4 For exampie, a l t h o u g h m o s t s t u d i e s r e p o r t t h a t w o m e n 4, 7. 17~t e n d to be more satisfied w i t h t h e i r care, several r e c e n t s t u d ies have f o u n d n o difference i n s a t i s f a c t i o n b y gender. 8. ~ Similarly, a l t h o u g h several s t u d i e s have reported that poorer p a t i e n t s a n d p e r s o n s of color were 239
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S t o n e et al., S a t i s f a c t i o n w i t h A I D S C a r e
less satisfied w i t h t h e i r care, a, s, 18 o t h e r s h a v e f o u n d n o s u c h r e l a t i o n s h i p . S, 17 Prior s t u d i e s h a v e f o u n d t h a t t h o s e w h o h a v e a personal r e l a t i o n s h i p w i t h a p h y s i c i a n or n u r s e t e n d to be more satisfied w i t h t h e i r care a n d r e p o r t fewer problems.a, 13, 17. 19 21 It is likely t h a t h a v i n g a f a m i l i a r s o u r c e of care facilitates a t r u s t i n g r e l a t i o n s h i p t h a t p r o m o t e s good c o m m u n i c a t i o n b e t w e e n t h e p a t i e n t a n d t h e h e a l t h care provider, a n d t h u s i m p r o v e s t h e e f f e c t i v e n e s s of t h e care given. 4. 17, 1 9 In several s t u d i e s of patients" satisfaction w i t h i n p a t i e n t h o s p i t a l care, it w a s f o u n d t h a t satisfaction w i t h n u r s i n g care h a d a s t r o n g e r c o r r e l a t i o n with overall s a t i s f a c t i o n t h a n d i d s a t i s f a c t i o n w i t h phys i c i a n care. s, 2~ A r e c e n t s t u d y of AIDS p a t i e n t s ' h o s p i t a l c a r e f o u n d t h a t p a t i e n t s r e p o r t e d fewer p r o b l e m s w i t h t h e i r care w h e n t r e a t e d on a n A I D S - d e s i g n a t e d i n p a t i e n t u n i t t h a n when treated on general medical-surgical floors. 23 As AIDS evolves from a h i g h - a c u i t y illness i n t o a c h r o n i c disease, a g r o w i n g p r o p o r t i o n of AIDS c a r e is b e i n g p r o v i d e d in the o u t p a t i e n t setting. To date, however, no s t u d y h a s e x a m i n e d h o w t h e o r g a n i z a t i o n a l s t r u c t u r e of a m b u l a -
Table t Patient Demographic Characteristics Patients [n]
Percentage
Gender Male Female
283 22
92.8 7.2
Race White* Black* Hispanic Asian and other
198 72 29 6
64.9 23.6 9.5 2.0
HIV risk factor Gay/bisexual Injection drug use Heterosexual/other
207 72 43
67.9 23,6 14.1
Payer status Private/fee for service+ HMO* Medicaid Uninsured
65 98 129 13
21.3 32. I 42.3 4.3
Education 12 years or less More than 12 years
123 182
40.3 59.6
Ambulatory site Group practice HMO site HIV clinic TOTAL
93 112 I00 305
*Non-Hispanic. ÷Includes three patients who had Medicare coverage. *HMO = health maintenance organization.
30.0 36.7 32.8 100
tory AIDS care is r e l a t e d to p a t i e n t s ' e v a l u a t i o n s of t h e i r o u t p a t i e n t care. A m o n g g e n e r a l m e d i c a l p o p u l a t i o n s , p a t i e n t s ' s a t i s f a c t i o n w i t h care h a s b e e n s h o w n to vary across types of a m b u l a t o r y p r a c t i c e o r g a n i z a t i o n s . 24-2s Most recently, R u b i n et al. 24 f o u n d t h a t p a t i e n t s r a t e d t h e i r visits to solo fee-for-service p r a c t i c e s best a n d r a t e d t h e i r a m b u l a t o r y c a r e in h e a l t h m a i n t e n a n c e o r g a n i z a t i o n s (HMOs) worst. In this s t u d y we e x a m i n e a n d c o m p a r e AIDS pat i e n t s ' r a t i n g s of t h e i r a m b u l a t o r y care for a diverse cohort of p a t i e n t s s e e n in t h r e e o r g a n i z a t i o n a l l y d i s t i n c t care sites, to d e t e r m i n e w h e t h e r t h e p e r c e p t i o n of a m bulatory care q u a l i t y by PWAs is r e l a t e d to t h e organization of a m b u l a t o r y HW services, p a t i e n t d e m o g r a p h i c factors, HIV risk factors, severity of illness, p r i m a r y care relationships, or self-perceived h e a l t h s t a t u s .
METHODS T h i s study w a s p a r t of a b r o a d e r effort, called the Boston Health Study, t h a t e x a m i n e d costs, o u t c o m e s , a n d quality of life for PWAs. 29 Eligible s u b j e c t s i n c l u d e d all PWAs w h o were active p a t i e n t s at t h r e e a m b u l a t o r y c a r e sites in B o s t o n as of F e b r u a r y 12, 1990, or w h o b e c a m e new p a t i e n t s d u r i n g t h e s u b s e q u e n t 13 m o n t h s . New p a t i e n t s i n c l u d e d b o t h t h o s e w h o w e r e already followed at one of the sites a n d developed AIDS d u r i n g t h e s t u d y period (February 12, 1990, to M a r c h 12, 1991 ) a n d PWAs who i n i t i a t e d care at o n e of t h e s i t e s d u r i n g t h e s t u d y period. T h e sites included: i) a public-hospital HIV clinic staffed by faculty a t t e n d i n g p h y s i c i a n s ( H I V c l i n i c ) ; 2) a g e n e r a l internal m e d i c i n e g r o u p p r a c t i c e ( g r o u p p r a c t i c e ) at a major t e a c h i n g h o s p i t a l t h a t i n t e g r a t e s faculty a n d resident practices; a n d 3) a m u l t i c e n t e r staff-model HMO with a central AIDS r e s o u r c e t e a m of a p h y s i c i a n a n d specially t r a i n e d n u r s e s ( H M O ) . P r i m a r y care in t h e HIV clinic was provided by a t t e n d i n g g e n e r a l i n t e r n i s t s a n d subspecialists. A t t e n d i n g g e n e r a l i n t e r n i s t s a n d m e d i c a l h o u s e s t a f f p r o v i d e d p r i m a r y c a r e at t h e g r o u p practice. At the HMO, m o s t PWAs received care f r o m t h e i r p r i m a r y care p h y s i c i a n s , a n d in a d d i t i o n , all p a t i e n t s were assigned a p r i m a r y n u r s e f r o m t h e c e n t r a l AIDS r e s o u r c e team. Together, t h e t h r e e s i t e s p r o v i d e d a m b u l a t o r y care for a p p r o x i m a t e l y 20% of all M a s s a c h u s e t t s PWAs at t h e time of the study. 3°
D a t a Sources Eligible p a t i e n t s were c o n t a c t e d initially by t h e i r medical care providers. If c o n s e n t w a s o b t a i n e d , t h e y were interviewed by m e m b e r s of t h e s t u d y ' s s u r v e y research team. P a t i e n t s w h o h a d AIDS at the t i m e t h e study began were interviewed d u r i n g the first four m o n t h s of the s t u d y period; n e w p a t i e n t s w e r e generally interviewed four m o n t h s a f t e r t h e y w e r e i d e n t i f i e d as eligible. English, S p a n i s h , a n d H a i t i a n Creole v e r s i o n s of t h e interview i n s t r u m e n t were available. All c o n s e n t i n g pa-
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tients were interviewed face-to-face to t h e i r preferred language by a m e m b e r of the survey r e s e a r c h t e a m i n a nonclinical care area. The i n t e r v i e w e r a s k e d a b o u t patient s o c i o d e m o g r a p h i c c h a r a c t e r i s t i c s , i n c l u d i n g gender, race, payer, family i n c o m e , e d u c a t i o n , a n d HIV risk factors. Patient r a t i n g s of q u a l i t y of care were elicited at the interview. A b a t t e r y of six q u e s t i o n s were a d a p t e d from the Group Health A s s o c i a t i o n of A m e r i c a ' s C o n s u m e r Satisfaction Survey. al The q u e s t i o n s a s k e d a b o u t the technical a n d i n t e r p e r s o n a l q u a l i t y of n u r s i n g a n d physician care, a b o u t p a t i e n t involvement i n care, a n d a b o u t overall quality. P a t i e n t s were a s k e d to rate each of t h e s e aspects of t h e i r care o n a five-point Likert scale (5 = excellent, 1 = poor). Health s t a t u s was m e a s u r e d by asking p a t i e n t s to rate t h e i r h e a l t h d u r i n g the p r e v i o u s four m o n t h s , o n a scale of 1 to 100. Severity of illness was assessed u s i n g the J u s t i c e S t a g i n g S y s t e m , w i t h data o b t a i n e d from medical record review. 32-34 P a t i e n t s were a s k e d w h e t h e r they h a d a r e g u l a r physician provider a n d n u r s e provider at t h e i r site a n d , if so, to identify those i n d i v i d u a l s . All t h r e e sites h a d the policy of a s s i g n i n g a specific p r i m a r y care p h y s i c i a n to oversee the care of each p a t i e n t . Only two of the three sites, the g r o u p practice a n d the HMO, a s s i g n e d p a t i e n t s a specific p r i m a r y n u r s e . At the t h i r d site (HIV clinic), all the n o n - E n g l i s h - s p e a k i n g p a t i e n t s were k n o w n to see the s a m e n u r s e at all visits; i n a d d i t i o n , it was felt that other p a t i e n t s m a y have developed a r e l a t i o n s h i p with a regular n u r s e as well. The q u e s t i o n s a b o u t patient-rated q u a l i t y of care (PRQC), r e g u l a r providers, a n d self-perceived h e a l t h s t a t u s are listed i n A p p e n d i x A.
Statistical Analysis Our p r i m a r y objective was to e x a m i n e w h e t h e r patient a n d a m b u l a t o r y care site c h a r a c t e r i s t i c s are related to p a t i e n t s ' p e r c e p t i o n s of quality. T h e q u e s t i o n s a b o u t p a t i e n t s a t i s f a c t i o n have b e e n s h o w n to be reliable a n d to have excellent c o n t e n t a n d predictive validity. 31 However, b e c a u s e the c o n t e n t a r e a s of the q u e s t i o n s varied somewhat, we c o n d u c t e d exploratory p r i n c i p a l compon e n t s factor a n a l y s i s to d e t e r m i n e w h e t h e r m o r e t h a n one c o n s t r u c t was b e i n g m e a s u r e d . We i d e n t i f i e d only one factor (eigenvalue = 3.2). We also e x a m i n e d Cronbach's alpha to assess the reliability of the g r o u p of items 35 a n d found t h a t : 1 ) the overall a l p h a w a s h i g h (0.87) a n d did not vary by t a k i n g o u t a n y single q u e s t i o n ; a n d 2) the item-to-total c o r r e l a t i o n s were c o n s i s t e n t l y i n the 0.6 to 0.7 range. Therefore, we c o m b i n e d a n s w e r s from each item into a single additive PRQC score. We t h e n a s s e s s e d the a s s o c i a t i o n b e t w e e n PRQC scores a n d selected patient a n d site c h a r a c t e r i s t i c s u s i n g a n a l y s i s of v a r i a n c e (for c o n t i n u o u s variables) a n d the c h i - s q u a r e test (for categorical variables). T h e a s s o c i a t i o n b e t w e e n PRQC a n d this g r o u p of variables was f u r t h e r e x a m i n e d u s i n g a multiple l i n e a r r e g r e s s i o n model.
1995
244
Table 2 Patients at Each Site Who Could Identify a Regular Provider
HIV clinic Group practice HMO* site OVERALL
Primary Physician
Primary Nurse
98 (98%) 88 (95%) I I I (99%)
25 (25%) 54 (58%) 88 (79%)
297 (97%)
167 (55%)
*HMO - h e a l t h m a i n t e n a n c e o r g a n i z a t i o n .
To explore f u r t h e r the factors a s s o c i a t e d with low p a t i e n t r a t i n g s of quality, we created a d i c h o t o m o u s variable i n d i c a t i n g w h i c h p a t i e n t s h a d PRQC scores i n the lowest q u a r t i l e (actually 27.7% b e c a u s e of "ties"). We t h e n assessed the a s s o c i a t i o n s b e t w e e n low PRQC scores a n d the s a m e g r o u p of variables u s i n g the c h i - s q u a r e test. We e s t i m a t e d a m u l t i p l e logistic r e g r e s s i o n model with the s a m e d e m o g r a p h i c a n d clinical variables to identify i n d e p e n d e n t p r e d i c t o r s of low r a t i n g s of quality.
RESULTS Study P o p u l a t i o n We interviewed 305 p a t i e n t s from a total eligible pool of 505 p a t i e n t s (60%). Of the eligible p a t i e n t s , 11% refused, 10% died before interview, 4% were too sick, a n d 15% could n o t be c o n t a c t e d . Medical care providers reported selected d e m o g r a p h i c i n f o r m a t i o n a b o u t n o n r e s p o n d e n t s , i n c l u d i n g race, g e n d e r , age, a n d HIV r i s k factor(s). T h e r e w a s n o s i g n i f i c a n t difference b e t w e e n the r e s p o n d e n t s a n d the total eligible pool i n t e r m s of age, gender, race/ethnicity, h o m e l e s s n e s s , or h i s t o r y of injection d r u g use, b u t the r e s p o n d e n t s were m o r e likely to be h o m o s e x u a l m e n t h a n were the n o n r e s p o n d e n t s (69% vs 62%, p < 0.05). The 305 enrolled p a t i e n t s were s i m i l a r to AIDS patients i n Massachusetts3°; t h e i r d e m o g r a p h i c characteristics are o u t l i n e d i n Table 1. T h i r t y - t h r e e p e r c e n t of the total p a t i e n t s a m p l e received t h e i r care from the HIV clinic, 30% from the g r o u p practice, a n d 37% from the HMO (Table 1). Overall 97% of the p a t i e n t s could identify a r e g u l a r p h y s i c i a n (Table 2). In c o n t r a s t , only 55% of the p a t i e n t s could identify a r e g u l a r n u r s e , a n d t h e r e was s u b s t a n t i a l variation by site. Twenty-five p e r c e n t of the p a t i e n t s from the HIV clinic, 58% of t h o s e from the g r o u p practice, a n d 79% of t h o s e from the HMO i d e n t i f i e d a r e g u l a r nurse.
P a t i e n t - r a t e d Q u a l i t y of C a r e Means a n d s t a n d a r d d e v i a t i o n s (SDs) of the four d o m a i n s of PRQC are s h o w n i n Table 3. T h e m e a n PRQC score, the s u m of all of these c o m p o n e n t s , was 25.9 of a p o s s i b l e 30 (SD = 4.1; m e d i a n = 27; r a n g e = 8 to
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S t o n e e t al., S a t i s f a c t i o n w i t h A I D S C a r e
Table 3 Patient Ratings of Quality of Care
p r o p o r t i o n of p a t i e n t s w i t h low PRQC scores, w a s cons i s t e n t for all c o m p a r i s o n s .
Items
M e a n _+ SD
Quality of physician care Quality of n u r s i n g care Patient involvement in care Overall quality of care
2 2 1
8.8 ± 1.6 8.7 ± 1.6 4 . 1 ± 1.0
1
4.3
PATIENT-RATEDQUALITYOF CARE
6
In p a r t i c u l a r , w o m e n pa-
tients, black patients, injection drug using patients, and Medicaid patients were found to have significantly lower PRQC s c o r e s t h a n w e r e t h e o t h e r p a t i e n t s . T h o s e rec e i v i n g t h e i r c a r e a t t h e HIV c l i n i c h a d s i g n i f i c a n t l y l o w e r
_+ 0 . 8
PRQC s c o r e s t h a n d i d t h e p a t i e n t s c a r e d for a t t h e o t h e r
25.9 + 4.1
mary n u r s e r e p o r t e d s i g n i f i c a n t l y h i g h e r PRQC s c o r e s
two sites. In a d d i t i o n , t h e p a t i e n t s w h o i d e n t i f i e d a pria n d w e r e l e s s likely to h a v e LOW P R Q C s c o r e s t h a n w e r e the other patients. Those who could not identify a pri30). T h e c o e f f i c i e n t a l p h a f o r t h e P R Q C s c o r e w a s 0 . 8 7 .
m a r y p h y s i c i a n a l s o t e n d e d to b e l e s s s a t i s f i e d t h a n t h o s e
T h e m e a n PRQC s c o r e s a n d t h e p r o p o r t i o n of pa-
who could, although this difference was not statistically significant, probably because of the small number of
t i e n t s w i t h low s c o r e s w e r e s i g n i f i c a n t l y r e l a t e d to m o s t p a t i e n t a n d s i t e c h a r a c t e r i s t i c s (Table 4). T h e r a n k o r d e r of e a c h s t a t i s t i c , i.e., t h e m e a n P R Q C s c o r e s a n d t h e
p a t i e n t s w h o d i d n o t h a v e a p r i m a r y p h y s i c i a n . We u s e d multiple linear r e g r e s s i o n to e x a m i n e f u r t h e r the asso-
Table 4 Patient-rated Quality of Care [PRQC] and Low PRQC Stratified by Selected Patient a n d Site Characteristics
n
Mean PRQC
Gender Mate Female
270 18
26.1 23.2
Race White Black Hispanic
206 62 24
26.2 24.6 25.6
Payer Private/fee for service Health m a i n t e n a n c e organization Medicaid Uninsured
47 97 117 12
26.6 26.9 24.6 26.2
HIV risk factor Gay/bisexual Injection drug use Heterosexual/other
203 69 33
26.6 24.3 24.8
Education 12 years or less More t h a n 12 years
112 176
25.3 26.3
91 76 97
26.3 26.2 25.8
Site of care Group practice Health m a i n t e n a n c e organization site HIV clinic
92 110 86
26.6 26.5 24.5
Primary care providers Primary p h y s i c i a n - - Y e s Primary p h y s i c i a n - - N o Primary n u r s e - - Y e s Primary n u r s e - - N o
280 8 157 131
26.0 23.5 26.7 24.9
Severity of illness J u s t i c e stage 1 Justice stage 2 J u s t i c e stage 3
p-value*
Percentage Low PRQC
p-valuet
0.004 27.0 38.9
-0.28
22.6 43.5 37.5
0.004 0.001 0.27
19.4 21.6 37.6 25.0
0.09 0.1 0.002 0.83
21.6 44.9 33.3
0.0004 0.0003 0.45
31.3 25.6
-0.29
24.2 25.0 30.9
0.47 0.66 0.26
19.5 25.5 40.7
0.02 0.49 0.001
27.0 50.0 22.0 34.4
-0.15 -0.02
0.06
0.0003
0.003
0.05
0.64
0.0006
*Compares the m e a n s of the subgroups within each of the strata. +All comparisons are of the specific subgroup with the remainder of the d a t a set.
0.09 0.0004
JGIM
V o l u m e 10, M a y 1995
ciation of PRQC s c o r e s w i t h p a t i e n t a n d o r g a n i z a t i o n a l factors, a n d found t h a t p a t i e n t s w h o h a d a p r i m a r y n u r s e a n d those w h o r e p o r t e d b e t t e r h e a l t h s t a t u s h a d significantly h i g h e r PRQC scores. Black p a t i e n t s , t h o s e u s i n g injection drugs, a n d t h o s e i n s u r e d by M e d i c a i d h a d significantly lower PRQC s c o r e s t h a n did t h e o t h e r p a t i e n t s . In the logistic r e g r e s s i o n m o d e l i n c l u d i n g g e n d e r , race, HIV risk factor, payer, site, e d u c a t i o n , s e v e r i t y of illness, self-perceived h e a l t h s t a t u s , a n d h a v i n g a n identifiable p r i m a r y n u r s e , s i g n i f i c a n t p r e d i c t o r s (p < 0.05) of low PRQC were i n j e c t i o n d r u g u s e ( a d j u s t e d OR = 2.43; 95% CI = 1.13 to 5.23), b l a c k race (OR = 2.22; 95% CI = 1.04 to 4.78), a n d p r i m a r y n u r s e (OR = 0.50; 95% CI = 0.26 to 0.97). P a t i e n t s w h o h a d h i g h e r selfreported h e a l t h s t a t u s were less likely to have low PRQC scores (p = 0.004). We e v a l u a t e d several s e t s of interactions (e.g., b e t w e e n p r i m a r y n u r s e a n d site), b u t n o n e were s i g n i f i c a n t a n d so were n o t i n c l u d e d in t h e final model. B e c a u s e of c o n c e r n s r e g a r d i n g t h e level of cotlinearity b e t w e e n site a n d p r i m a r y n u r s i n g , a n d also between site a n d t h e p a t i e n t c h a r a c t e r i s t i c s of race a n d injection d r u g use, we r e p e a t e d t h e e n t i r e r e g r e s s i o n stratifying by site. T h e s e a n a l y s e s s h o w e d t h a t t h e effects of h a v i n g a p r i m a r y n u r s e were c o m p a r a b l e w i t h i n each of the sites, a l t h o u g h t h e c o r r e s p o n d i n g coefficient was not always s i g n i f i c a n t at t h e 0.05 level at every site b e c a u s e of t h e r e d u c e d s a m p l e sizes.
DISCUSSION In this s t u d y of a d i v e r s e c o h o r t of PWAs t r e a t e d in three o r g a n i z a t i o n a l l y d i s t i n c t sites, we f o u n d t h a t patients' p e r c e p t i o n s of t h e q u a l i t y of t h e i r care differed s u b s t a n t i a l l y by key p a t i e n t c h a r a c t e r i s t i c s a n d o n e site characteristic, p r i m a r y n u r s i n g . After c o n t r o l l i n g for patient a n d clinical variables, i n c l u d i n g HIV r i s k factors, e d u e a t i o n as a proxy for s o c i o e c o n o m i c s t a t u s , p a y e r status, a n d site of care, t h e p a t i e n t s w h o w e r e b l a c k or who were i n j e c t i o n d r u g u s e r s r a t e d t h e q u a l i t y of t h e i r care significantly lower t h a n d i d t h e o t h e r p a t i e n t s w i t h AIDS. F u r t h e r m o r e , t h e p r e s e n c e of a n i d e n t i f i a b l e primary n u r s e w a s s t r o n g l y p r e d i c t i v e of g r e a t e r p a t i e n t satisfaction, i n d e p e n d e n t of site, a n d t h u s m a y be a critical aspect of the o r g a n i z a t i o n of a m b u l a t o r y HIV care. T h e s e r e s u l t s s u g g e s t t h a t a m b u l a t o r y AIDS c a r e m a y b e less effective in m e e t i n g t h e e x p e c t a t i o n s of PWAs who are black or w h o are i n j e c t i o n d r u g u s e r s . F u r t h e r more, o u r u n a d j u s t e d r e s u l t s s u g g e s t t h a t PWAs w h o are women, o n average, also t e n d to be less satisfied. This is n o t e w o r t h y b e c a u s e in m a n y o t h e r s t u d i e s w o m e n tend to be m o r e satisfied with t h e i r a m b u l a t o r y care. 4" 7. 17 As the HIV e p i d e m i c evolves to i n c l u d e i n c r e a s i n g percentages of p e r s o n s of color, i n j e c t i o n d r u g u s e r s , a n d women, models of care t h a t h a v e g a i n e d a c c e p t a n c e a n d proven useful a m o n g t h o s e in t h e initial wave of t h e epidemic ( p r i m a r i l y h o m o s e x u a l w h i t e m e n ) n e e d to b e
243
carefully reassessed to d e t e r m i n e w h e t h e r they are equally effective a n d r e l e v a n t for all p a t i e n t s c u r r e n t l y affected by this disease. Several o t h e r r e c e n t s t u d i e s h a v e f o u n d t h a t pat i e n t s of lower s o c i o e c o n o m i c s t a t u s , p e r s o n s of color, a n d those w i t h lower p e r c e i v e d h e a l t h s t a t u s are generally less s a t i s f i e d t h a n o t h e r p a t i e n t s . 3, ~. tg, 36. 37 S i m ilarly, the p r e s e n t s t u d y i d e n t i f i e d two g r o u p s of traditionally m o r e d i s a d v a n t a g e d p a t i e n t s as less satisfied, blacks a n d i n j e c t i o n d r u g u s e r s . Yet e d u c a t i o n , u s e d as a proxy for s o c i o e c o n o m i c s t a t u s , w a s n o t r e l a t e d to patient r a t i n g s of quality. T h e only o t h e r p r e v i o u s s t u d y to examine p a t i e n t satisfaction w i t h a m b u l a t o r y HIV care also f o u n d t h a t i n j e c t i o n d r u g u s e r s a n d t h o s e w i t h lower perceived h e a l t h s t a t u s w e r e less satisfied. 36 T h e findings s u g g e s t t h a t blacks, i n j e c t i o n drug~users, a n d t h o s e of lower h e a l t h s t a t u s m a y be r e c e i v i n g m e d i c a l care of lower q u a l i t y t h a n are o t h e r p a t i e n t s , or t h a t they are not receiving t h e specific s e r v i c e s t h a t t h e y n e e d a n d expect. T h i s p o s s i b i l i t y is s u p p o r t e d by several r e c e n t large s t u d i e s a m o n g c o h o r t s of s y m p t o m a t i c H1V-infected p a t i e n t s , w h i c h h a v e d o c u m e n t e d differential provision of key H1V p r e s c r i p t i o n d r u g t h e r a p i e s to b l a c k s a n d injection d r u g u s e r s , a8-4° T h e only c a r e s y s t e m v a r i a b l e t h a t was r e l a t e d to greater s a t i s f a c t i o n w a s h a v i n g a n i d e n t i f i a b l e p r i m a r y nurse. Previous s a t i s f a c t i o n s t u d i e s h a v e d o c u m e n t e d the i m p o r t a n t role of n u r s e p r o v i d e r s in d e t e r m i n i n g p a t i e n t s ' level of s a t i s f a c t i o n w i t h t h e i r care, especially t h e i r i n p a t i e n t care. 8, 22 However, no p r e v i o u s AIDS lite r a t u r e h a s f o c u s e d on t h e p a t i e n t - n u r s e r e l a t i o n s h i p . Rather, a s u b s t a n t i a l b o d y of l i t e r a t u r e c o n c e r n e d w i t h HIV/AIDS services h a s i d e n t i f i e d t h e case m a n a g e r as a key provider w h o s e i n v o l v e m e n t w i t h PWAs is e x p e c t e d to result in i n c r e a s e d p a t i e n t s a t i s f a c t i o n . 36, 4~ 46 Furt h e r r e s e a r c h is n e e d e d to clarify t h e relative i m p o r t a n c e of each of t h e s e n o n p h y s i c i a n p r o v i d e r s in e n h a n c i n g p a t i e n t s ' care. T h i s s t u d y e x a m i n e d d a t a for a c o h o r t of PWAs in one state only a n d i n c l u d e d only t h r e e sites. While we collected detailed f i n a n c i a l d a t a f r o m e a c h p a t i e n t , it proved to be difficult to u s e t h e s e d a t a to r e p r e s e n t t h e p a t i e n t ' s s o c i o e c o n o m i c s t a t u s . B e c a u s e of t h e debilit a t i n g n a t u r e of AIDS, m a n y of t h e p a t i e n t s h a d b e e n out of work for v a r y i n g l e n g t h s of time, a n d t h o s e w h o were c o n t i n u i n g to w o r k were s e l d o m w o r k i n g u p to t h e i r p r e m o r b i d capacities. However, t h e r e w a s a wide r a n g e of e d u c a t i o n a l a t t a i n m e n t a m o n g o u r p a t i e n t s a m p l e , w h i c h a p p e a r e d to h a v e a close r e l a t i o n s h i p to p r e m o r bid o c c u p a t i o n a n d e m p l o y m e n t s t a t u s . F u r t h e r m o r e , b e c a u s e a large n u m b e r of t h e b l a c k p a t i e n t s a n d i n j e c t i o n d r u g u s i n g p a t i e n t s were at a single site, the p u b l i c - h o s p i t a l - b a s e d HIV clinic, it is possible t h a t g e n e r a l beliefs a b o u t p u b l i c h e a l t h care m a y have i n f l u e n c e d t h e p a t i e n t s ' p e r c e p t i o n s of t h e quality of the care t h e y receive there. T h i s m a y l i m i t t h e generalizability of o u r results.
244
S t o n e et al., S a t i s f a c t i o n w i t h A I D S C a r e
Finally, we did not ask patients of their medical encounters
about specific details
that would explain the basis
of the lower evaluations of quality by injection drug users, blacks, those of lower health primary nurses. questions
Thus,
about
status,
these findings
AIDS patients'
with their ambulatory
and those without
individual
experiences
care and their perceptions
formation
research
about
acteristics reported
of ambulatory and
here
dependent
primary
that
detailed
us to evaluate
ambulatory
drug
our
char-
findings
AIDS care,
in-
and
validate
in ambulatory
20. 21.
the needs
of PWAs who are black or who are in-
users,
nursing
in-
the process
AIDS care by patient
of site, is less effective in meeting
and expectations jection
to obtain
site of care. Nevertheless, suggest
18. 19.
is required
that would enable
and content
17.
leave unanswered
the quality of that care. Further
16.
the important
22.
role of
AIDS care.
23.
24.
The authors are indebted to Arnold M. Epstein, MD, MA, the principal investigator of this study, and their co-investigators Kathryn Co#in, RN, MPH, Donald Craven, MD, Floyd Fowler, PhD, Constantine Gatsonis, PhD, Joan Goldberg, MD, Harvey Makadon, MD, Michael Massagli, PhD, George Seage, DSc, MPH, and all the providers at each of the sites who assisted with patient enrollment efforts. The authors are also indebted to Maya Y. Mauoh for assistance with preparation of the manuscript.
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APPENDIX A
Q u e s t i o n s Used in the S t u d y Patient-rated Quality of Care A. How w o u l d y o u r a t e t h e r e s p e c t , f r i e n d l i n e s s , a n d c o u r t e s y of t h e n u r s e s ? 1, Poor 2. F a i r 3. Good 4. Very g o o d 5. E x c e l l e n t
E. How w o u l d y o u r a t e t h e e x t e n t to w h i c h t h e d o c t o r s i n v o l v e you in decisions about your medical care? 1. Poor 2. F a i r 3. Good 4. Very g o o d 5. E x c e l l e n t F. How w o u l d y o u r a t e t h e o v e r a l l q u a l i t y of t h e m e d i c a l c a r e y o u a re r e c e i v i n g ?
B. How w o u l d y o u r a t e t h e r e s p e c t , f r i e n d l i n e s s , a n d c o u r t e s y
I. Poor
of t h e d o c t o r s ?
2. F a i r
1. Poor 2. F a i r
3. G o o d 4. Very g o o d
3. Go od
5. E x c e l l e n t
4. Very g o o d 5. E x c e l l e n t
Regular Provider(s) A1. Do y o u h a v e o n e p a r t i c u l a r n u r s e w h o i s r e s p o n s i b l e for
C. How w o u l d y o u r a t e t h e s k i l l a n d t r a i n i n g of y o u r n u r s e s ?
you at your care site?
I. Poor 2. F a i r
A2. W h a t i s h i s o r h e r n a m e ?
3. Good
B1. Do y o u h a v e o n e p a r t i c u l a r d o c t o r w h o i s r e s p o n s i b l e for you at your care site?
4. Very g o o d 5. E x c e l l e n t
B2. W h a t is h i s or h e r n a m e ? D, How w o u l d y o u r a t e t h e s k i l l a n d t r a i n i n g of y o u r d o c t o r s ? 1. Poor
Self-perceived Health Status
3. Good
T h i n k a b o u t a s c a l e f r o m 0 to I 0 0 , w i t h 0 b e i n g a s b a d a s a p e r s o n c a n b e a n d 100 b e i n g e x c e l l e n t h e a l t h , a s g o o d a s a
4. Very g o o d
p e r s o n c a n be. D u r i n g t h e l a s t 4 m o n t h s w h a t n u m b e r w o u l d
5. E x c e l l e n t
you h a v e r a t e d y o u r h e a l t h a t i t s b e s t ?
2. F a i r