Chapter 5. Patient Centeredness

Patient centeredness is defined as:

[H]ealth care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. ¹

An important dimension of quality, patient centeredness "encompasses qualities of compassion, empathy, and responsiveness to the needs, values, and expressed preferences of the individual patient."² In addition, effective communication between the provider and the patient is often a legal requirement.ⁱ

Importance and Measures

Morbidity and Mortality

• Patient-centered approaches to care have been shown to improve patients' health status. These approaches rely on building a provider-patient relationship, improving communication, fostering a positive atmosphere, and encouraging patients to actively participate in provider-patient interactions.^3,4
• A patient-centered approach has been shown to lessen patients' symptom burden.⁵
• Patient-centered care encourages patients to comply with treatment regimens.⁶
• Patient-centered care can reduce the chance of misdiagnosis due to poor communication.⁷

Cost

• Patient centeredness has been shown to reduce underuse and overuse of medical services.⁸
• Patient centeredness can reduce the strain on system resources and save money by reducing the number of diagnostic tests and referrals.⁵
• Although some studies have shown that being patient centered reduces medical costs and use of health service resources, others have shown that patient centeredness increases providers' costs, especially in the short run.⁹ 

Measures

The National Healthcare Quality Report (NHQR) tracks several measures of patients' experience of care. The core report measure is a composite of these measures-patients' assessments of how often their provider listened carefully to them, explained things clearly, respected what they had to say, and spent enough time with them. This measure is presented separately for adult and child patients. In addition, this NHQR includes a section focusing on care coordination.

Findings

Patients' Experience of Care-Adults

Optimal health care requires good communication between patients and providers, yet barriers to providerpatient communication are common. To provide all patients with the best possible care, providers must be able to understand patients' diverse health care needs and preferences and communicate clearly with patients about their care.

Figure 5.1. Adults who had a doctor's office or clinic visit in the last 12 months who reported poor communication with health providers: Overall composite, by insurance, 2002-2006

Source: Agency for Healthcare Research and Quality, Medical Expenditure Panel Survey, 2002-2006.
Denominator: Civilian noninstitutionalized population age 18 and over who had a doctor's office or clinic visit in the last 12 months.
Note: Patients who report that their health providers sometimes or never listened carefully, explained things clearly, showed respect for what they had to say, or spent enough time with them are considered to have poor communication.

• From 2002 to 2006, the percentage of adults ages 18-64 with a doctor's office or clinic visit who reported poor communication decreased from 11.6% to 10.4% (Figure 5.1).
• Between 2002 and 2006, the percentage of adults with a doctor's office or clinic visit who reported poor communication decreased for adults with any private insurance, from 10.4% to 8.9%.
• In all data years, adults with public insurance and uninsured adults were more likely to report poor communication with their health providers compared with those with private insurance.
• From 2002 to 2006, there were no statistically significant changes overall or for any insurance group in the percentage of adults age 65 and over with a doctor's office or clinic visit who reported poor communication with their health providers.
• In 2003, 2005, and 2006, adults with Medicare and other public insurance were more likely to report poor communication with their health providers compared with those with Medicare and private insurance.

Patients' Experience of Care—Children

Communication in children's health care can pose a particular challenge. Children are often less able to express their health care needs and preferences, and a third party (e.g., a parent or guardian) is involved in communication and decisionmaking. Optimal communication in children's health care can therefore have a significant impact on receipt of high-quality care and subsequent health status.

Figure 5.2. Children who had a doctor's office or clinic visit in the last 12 months whose parents reported poor communication with health providers: Overall composite, by insurance, 2002-2006

Source: Agency for Healthcare Research and Quality, Medical Expenditure Panel Survey, 2002-2006.
Denominator: Civilian noninstitutionalized population under age 18 who had a doctor's office or clinic visit in the last 12 months.
Note: Parents who report that their child's health providers sometimes or never listened carefully, explained things clearly, showed respect for what they had to say, or spent enough time with them are considered to have poor communication.

• In 2006, 4.8% of parents of children who had a doctor's office or clinic visit in the last 12 months reported poor communication with health providers. This rate is a significant improvement over the 2002 rate of 6.7% (Figure 5.2).
• Improvement since 2002 is also significant for children with any private insurance or public insurance only.
• In all data years, parents of children with public insurance were more likely to report poor communication with their health providers compared with those with private insurance.

Focus on Care Coordination

Health care in the United States was not designed to be patient centered. Clinical services are frequently organized around specific symptoms or organ systems and can be fragmented and difficult to navigate. Patients often receive medical services, treatments, and advice from multiple providers in many different care settings, each scrutinizing a particular body part and none attending to the patient as a whole. Communication of important information among providers and between providers and patients may entail delays or inaccuracies or fail to occur at all.

The patient-centered medical home is one approach to organizing care around a person and helping each person stay as healthy as possible. A key element is a personal physician leading a team of health care professionals. These professionals collectively take responsibility for providing all the services that a patient needs or arranging for and coordinating care provided by others.

This section focuses on the work of providers related to coordinating care. Care coordination is defined as the deliberate organization of patient care activities between two or more participants involved in a patient's care to facilitate appropriate delivery of health care services.¹⁰ It is multidimensional and essential to preventing adverse events, ensuring efficiency, and making care patient centered.^10,11 Key elements of care coordination include integrating medical information from all the providers a patient sees and managing patient transitions from one setting of care to another.

The focus on care coordination in this NHQR does not attempt to provide a comprehensive framework for care coordination, nor does it provide an exhaustive list of potential measures. Rather, it provides examples where some information is available. AHRQ hopes that this section will stimulate productive discussions in the area of care coordination, including development and use of valid, reliable, and feasible quality measures. AHRQ intends this chapter to be the first step in an evolving national discussion on measuring care coordination.

Integration of Information

Patients often seek care from many providers. Medical information generated in different settings may not be sent to a patient's primary care provider. Actively gathering and managing all of a patient's medical information is an important part of care coordination. Tasks include ensuring that patients are informed of important findings such as test results, primary care doctors are informed of care from specialists, and providers within a practice have access to needed information.

No national survey currently gathers information from patients about these aspects of care coordination. To help fill this gap, we examined subnational data-gathering activities and identified the Massachusetts Health Quality Partners (MHQP) Patient Experience Survey as a unique source of this information. MHQP is an independent organization established in 1995. It is a broad-based coalition of physicians, hospitals, health plans, purchasers, consumers, academics, and government agencies working together to promote improvement in the quality of health care services in Massachusetts. MHQP has conducted the Patient Experience Survey since 2005.

In 2007, MHQP conducted a mail and Internet survey of commercially insured adult and pediatric patients' experiences of care. The survey included patients being served in primary care practices with at least three doctors.¹² Several questions related directly to coordination of information across providers and patients. The survey was completed by 51,000 adult patients and 20,000 parents of pediatric patients receiving care in more than 400 medical practices in Massachusetts. The response rate was 42%.

Figure 5.3. Patients who reported that they always received test results, that their personal doctor always seemed informed and up to date about care received from specialist doctors, and that other providers at their doctor's office always had all the information they needed, commercially insured adults ages 18-64, Massachusetts, 2007

Source: Massachusetts Health Quality Partners, Patient Experience Survey, 2007.
Denominator: Commercially insured adults ages 18-64 in primary care practices with at least three doctors.
Note: Respondents limited to patients who received particular services in the past year: had a test, had a referral to a specialist, or saw another provider in their doctor's office.

• Of adult patients who were sent for a blood test, x-ray, or other test by their personal primary care doctor, 68% reported that someone from the doctor's office always followed up to give them the test results (Figure 5.3).
• Of patients whose personal doctor recommended that they see a specialist, 57% reported that their doctor always seemed informed and up to date about the care they received from specialists.
• Among adults who saw other doctors or nurses in their personal doctor's office, 51% reported that the other providers always had all the information they needed to correctly diagnose and treat their health problem.

Figure 5.4. Parents who reported that they always received test results for their child, that their child's personal doctor always seemed informed and up to date about care received from specialist doctors, and that other providers at their child's doctor's office always had all the information they needed, commercially insured children under age 18, Massachusetts, 2007

Source: Massachusetts Health Quality Partners, Patient Experience Survey, 2007.
Denominator: Commercially insured children under age 18 in primary care practices with at least three doctors.
Note: Respondents limited to parents of patients who received particular services in the past year: had a test, had a referral to a specialist, or saw another provider in their doctor's office.

• Among parents of pediatric patients who were sent for a test, 69% reported that someone from the doctor's office always followed up to give the test results (Figure 5.4).
• Sixty-one percent of parents reported that their child's doctor always seemed informed and up to date about the care the child received from specialists.
• Among parents of pediatric patients who saw other doctors or nurses, 59% reported that the other providers always had all the information they needed.

Transitions of Care

As health care conditions and needs change, patients often need to be moved from one setting to another. These transitions of care place patients at heightened risk of adverse events. Important information may be lost or miscommunicated as responsibility is delivered to new parties.

A common transition of care is discharge from the hospital, with approximately 39 million community hospital discharges occurring each year.¹³ Discharge from a hospital typically indicates improvement in a patient's condition so that the patient no longer requires inpatient care. It also means that the patient and family must resume responsibility for the patient's daily activities, diet, medications, and other treatments. The patient also needs to visit his or her personal doctor and know what to do if his or her condition deteriorates.

Discharge instructions can help ensure that a patient receives the information needed to stay healthy after leaving the hospital. The NHQR reports on a measure that tracks receipt of written discharge instructions among adult patients hospitalized for heart failure. It also reports on two measures that reflect discharged patients' perceptions regarding the adequacy of the discharge information they received.

Figure 5.5. Hospitalized adult patients with heart failure who were given complete written discharge instructions, by age, 2005-2007

Source: Centers for Medicare & Medicaid Services, Medicare Quality Improvement Organization Program, 2005-2007.
Denominator: Hospitalized adult patients with a principal discharge diagnosis of heart failure.
Note: Complete written discharge instructions needed to address all of the following: activity level, diet, discharge medications, followup appointment, weight monitoring, and actions to take if symptoms worsen.

• From 2005 to 2007, the percentage of hospitalized adult patients with heart failure who were given complete written discharge instructions improved from 57.5% to 76.0% (Figure 5.5). Improvements were observed among all age groups.
• Differences among age groups were not observed.

Figure 5.6. Adult hospital patients who were discharged and reported that hospital staff did NOT provide adequate discharge information, 2008

Source: Centers for Medicare & Medicaid Services, Medicare Quality Improvement Organization Program, 2008.
Denominator: Adult hospital patients.
Note: Rate is adjusted for patient mix, mode of data collection, and nonresponse bias.

• Among adult hospital patients, 21.9% reported that hospital staff did not talk with them about help at home and 17.5% reported that they did not get written information about what symptoms or problems to look for (Figure 5.6).

Care Coordination for Children With Special Health Care Needs

Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.¹⁴ They may need services not only from medical specialists, but also from other therapists (e.g., nutritionists, occupational therapists, mental health care providers) and educational specialists. Therefore, appropriate and timely coordination of care across multiple providers may be particularly important for children with special health care needs.

In the 2008 National Healthcare Disparities Report, information about care coordination from the 2005-2006 National Survey of Children With Special Health Care Needs¹⁵ was presented. In this NHQR, we examine variation across States in receipt of coordinated care. For a child to qualify as receiving coordinated care, the parent had to report that they:

• Usually got as much help as wanted arranging or coordinating care.
• Were very satisfied with communication between the child's health care providers and his or her school, early intervention program, child care providers, or vocational education or rehabilitation program.
• Were very satisfied with the communication between the child's doctors and other health care providers.

Figure 5.7. State variation: Children with special health care needs who received coordinated care, 2005-2006

Key: Best quartile indicates States with highest rates of coordinated care; worst quartile indicates States with lowest rates.
Source: Health Resources and Services Administration, Maternal and Child Health Bureau; Centers for Disease Control and Prevention, National Center for Health Statistics, National Survey of Children With Special Health Care Needs, 2005-2006.
Note: Analyses performed by the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health (http://www.cshcndata.org ).

• Overall, among children with special health care needs who required help with care coordination, 46.0% received the help they needed. Among States, the percentage receiving coordination ranged from 38.3% to 53.2%.
• The 13 Statesⁱ in the best quartile (highest rates of coordinated care) in 2005-2006 had a combined average rate of 50.5%. These States are primarily located in New England and the Midwest (Figure 5.7).
• Eleven Statesⁱⁱ and the District of Columbia were in the worst quartile (lowest rates of coordinated care) in 2005-2006, with a combined average rate of 41.5%. These States are primarily located in the western United States.

ⁱ The States are Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Missouri, Ohio, Pennsylvania, Rhode Island, South Dakota, Tennessee, and Vermont.
ⁱⁱ The States are Alaska, Arizona, Delaware, Florida, Idaho, Illinois, Nevada, New Jersey, Oklahoma, Utah, and Washington. 

References

1. Institute of Medicine. Envisioning the National Health Care Quality Report. Washington, DC: National Academy Press; 2001.

2. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press; 2001.

3. Stewart M, Brown JB, Donner A, et al. The impact of patient-centered care on outcomes. J Fam Pract 2000 Sep;49(9):796-804.

4. Anderson EB. Patient-centeredness: a new approach. Nephrol News Issues 2002 Nov;16(12):80-82.

5. Little P, Everitt H, Williamson I, et al. Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. BMJ (Clinical research ed) 2001 Oct 20;323(7318):908-11.

6. Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the primary care office: a systematic review. J Am Board Fam Pract 2002 Jan-Feb;15(1):25-38.

7. DiMatteo MR. The role of the physician in the emerging health care environment. West J Med 1998 May;168(5):328-33.

8. Berry LL, Seiders K, Wilder SS. Innovations in access to care: a patient-centered approach. Ann Intern Med 2003 Oct 7;139(7):568-74.

9. Bechel DL, Myers WA, Smith DG. Does patient-centered care pay off? Jt Comm J Qual Improv 2000 Jul;26(7):400-9.

10. Shojania K, McDonald K, Wachter R, et al. Closing the quality gap: a critical analysis of quality improvement strategies—Volume 7: care coordination. Rockville, MD: Agency for Healthcare Research and Quality; 2007. AHRQ Publication No. 04(07)-0051-7. Available at: https://www.ahrq.gov/research/findings/evidence-based-reports/caregaptp.html. Accessed on June 15, 2009.

11. Davies G, Williams A, Larsen K, et al. Coordinating primary health care: an analysis of the outcomes of a systematic review. Med J Aust 2008 Apr 21;188(8):S65-S68.

12. Quality insights: 2007 Patient Experiences in Primary Care. Massachusetts statewide results. Watertown: Massachusetts Health Quality Partners; 2009. Available at: http://www.mhqp.org/quality/pes/pesMASumm.asp?nav=031600.

13. Agency for Healthcare Research and Quality. Healthcare Cost and Utilization Project. HCUPNet. 2006 national statistics outcomes for all discharges. Available at: http://www.hcupnet.ahrq.gov.

14. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998 Jul;102(1 Pt 1):137-40.

15. Maternal and Child Health Bureau. The National Survey of Children With Special Health Care Needs, chartbook 2005-2006. Rockville, MD: Health Resources and Services Administration; 2008. Available at: http://mchb.hrsa.gov/cshcn05/index.htm. Accessed on August 12, 2009.

ⁱ For example, Title VI of the Civil Rights Act of 1964, 42 U.S.C. 2000d, may require the practitioner or hospital to provide language interpreters and translate vital documents for limited-English-proficient people. Section 504 of the Rehabilitation Act of 1973, 29 U.S.C. 794, may require sign language interpreters, materials in Braille, or accessible electronic formats for people with disabilities.

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