Appendix I (continued)

Complete List of Articles and Reports Reviewed

Albert SM, Logsdon R. Assessing quality of life in Alzheimer's disease.   New York, NY: Springer Publishing Company; 2000.

Allen SM, Mor V. The prevalence and consequences of unmet need: contrasts between older and younger adults with disability. Med Care 1997 Nov;35(11):1132-48.

Applebaum RB, Kunkel S, Davis S. A guide to quality in consumer-directed services. (Study funded by the Robert Wood Johnson Foundation as part of the National Cash and Counseling Demonstration Project). Miami, OH: Scripps Gerontology Institute, Miami University of Ohio; May 2004.

Arnold R, Ranchor AV, Sanderman R, et al. The relative contribution of domains of quality of life to overall quality of life for different chronic diseases. Qual Life Res 2004 Jun;13(5):883-96.

Bethell C. Patient-centered care measures for the National Health Care Quality Report. Portland, OR: Foundation for Accountability; 2000.

Bickman L, Slazer M. Measuring quality in mental health services. Eval Rev 1997 Jun;21(3):285-91.

Bonomi AE, Wagner EH, Glasgow RE, et al. Assessment of chronic illness care (ACIC): a practical tool to measure quality improvement. Health Serv Res 2002 Jun;37(3):791-820.

Bradley V, Moseley C. National core indicators: ten years of collaborative performance measurement. Intellect Dev Disabil 2007 Oct;45(5):354-8.

Bruce B, Fries JF. The Health Assessment Questionnaire (HAQ). Clin Exp Rheumatol 2005 Sep-Oct;23(5 (Suppl 39):S14-8.

Burckhardt CS, Anderson KL, Archenholtz B, et al. The Flanagan Quality of Life Scale: evidence of construct validity. Health Qual Life Outcomes 2003 Oct 23;1:59.

Burckhardt CS, Anderson KL. The Quality of Life Scale (QOLS): reliability, validity, and utilization. Health Qual Life Outcomes 2003 Oct 23;1:60.

Capitman J, Abrahams R, Ritter G. Measuring the adequacy of home care for frail elders. Gerontologist 1997 Jun;37(3):303-13.

Center for Disability Issues and the Health Professions. Performance standards for Medi-Cal managed care organizations serving people with disabilities and chronic conditions. (Funded by the California HealthCare Foundation). Hamilton, NJ: Center for Health Care Strategies, The Lewin Group; 2005. Available at: http://www.chcs.org/publications3960/publications_show.htm?doc_id=323343.

Center for Health Policy and Research. Promising practices: managing care for people with disabilities. Shrewsbury, MA: University of Massachusetts Medical School; 2004.

Cieza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the International Classification of Functioning, Disability and Health (ICF). Qual Life Res 2005 Jun;14(5):1225-37.

Cott CA, Teare G, McGilton KS, et al. Reliability and construct validity of the Client-Centred Rehabilitation Questionnaire. Disabil Rehabil 2006 Nov;28(22):1387-97.

Dassow P L. Measuring performance in primary care: what patient outcome indicators do physicians value? J Am Board Fam Med 2007 Jan-Feb;20(1):1-8.

De Mendonça Lima CA, Kühne N, Bertolote JM. Quality assurance: the experience of a geriatric psychiatry day hospital. Arch Gerontol Geriatr Suppl 2001;7:111-20.

Druss BG, Rosenheck RA, Stolar M. Patient satisfaction and administrative measures as indicators of the quality of mental health care. Psychiatr Serv 1999 Aug;50(8):1053-8.

Eisenberg J, Power E. Transforming insurance coverage into quality health care: voltage drops from potential to delivered quality. JAMA 2000;284(16):2100-7.

Erwin-Toth P, Spencer M. A survey of patient perception of quality of care. J ET Nurs 1991 Jul-Aug;18(4):122-5.

Ettema TP, Dröes RM, de Lange J, et al. A review of quality of life instruments used in dementia. Qual Life Res 2005 Apr;14(3):675-86.

Folkemer D, Coleman B. Home care quality: emerging state strategies to deliver person-centered services. Washington, DC: AARP Public Policy Institute; 2006. http://assets.aarp.org/rgcenter/il/2006_07_hcc.pdf. [Plugin Software Help]

Fralich J, Bratesman S. Quality indicators for home and community-based services. Portland, ME: Muskie School of Public Policy, University of Southern Maine; 2004. http://www.hcbs.org/files/71/3548/HCBS_Quality_Report_final.pdf. [Plugin Software Help]

Galantowicz S, Jackson B. Final report: development of the Participant Experience Survey (PES). (Prepared for Center for Medicaid and State Operations, Centers for Medicare & Medicaid Services, under Contract No. 500-96-0006, Task Order 2). Cambridge, MA: The MEDSTAT Group; 2005.

Gardner JF, Nudler S, Chapman MS. Personal outcomes as measures of quality. Ment Retard 1997 Aug;35(4):295-305.

Geron SM, Smith K, Tennstedt S, et al. The home care satisfaction measure: a client-centered approach to assessing satisfaction of frail older adults with home care services. J Gerontol B Psychol Sci Soc Sci 2000 Sep;55(5):S259-70.

Grey L, Feinberg LF. Survey of Californians about in-home care services. San Francisco, CA: National Center on Caregiving at the Family Caregiver Alliance; March 2003.

Hébert R, Guilbault J, Desrosiers J, et al. The Functional Autonomy Measurement System (SMAF): a clinical-based instrument for measuring disabilities and handicaps in older people. J Can Geriatr Soc 2001 Sep(4):141-7.

Hekkink CF. QUOTE-HIV: an instrument for assessing quality of HIV care from the patients' perspective. Qual Saf Health Care 2003 Jun;12(3):188-93.

Hedrick SC, Sales AE, Sullivan JH, et al. Resident outcomes of Medicaid-funded community residential care. Gerontologist 2003 Aug;43(4):473-82.

Hermann RC, Chan JA, Provost SE, et al. Statistical benchmarks for process measures of quality of care for mental and substance use disorders. Psychiatr Serv 2006 Oct;57(10):1461-7.

Hermann RC, Palmer H, Leff S, et al. Achieving consensus across diverse stakeholders on quality measures for mental healthcare. Med Care 2004 Dec;42(12):1246-53.

Hirdes JP, Fries BE, Morris JN, et al. Home Care Quality Indicators (HCQIs) based on the MDS-HC. Gerontologist 2004 Oct;44 (5):665-79.

Holstein BE, Avlund K, Due P, et al. The measurement of change in functional ability: dealing with attrition and the floor/ceiling effect. Arch Gerontol Geriatr 2006 Nov-Dec;43(3):337-50.

Howe R, Greenberg L. Performance measurement for case management: principles and objectives for developing standard measures. Case Manager 2005 Sep-Oct;16(5):52-56.

Jette AM, Haley SM, Ni P. Comparison of functional status tools used in post-acute care. Health Care Financ Rev 2003 Spring;24(3):13-24.

Kahn KL, Malin JL, Adams J, et al. Developing a reliable, valid, and feasible plan for quality-of-care measurement for cancer: how should we measure? Med Care 2002 Jun;40(6 Suppl):III73-85.

Kane RL, Homyak P, Bershadsky B, et al. Outcomes of managed care of dually eligible older persons. Gerontologist 2003 Apr;43(2):165-74.

Keepnews D. Using patient satisfaction data to improve home healthcare. J Healthc Qual 2004 May-Jun;26(3):4-9.

Kitchener M, Ng T, Miller N, et al. Institutional and community-based long-term care: a comparative estimate of public costs. J Health Soc Policy 2006;22(2):31-50.

Lake T, Kvam C, Gold M. Literature review: using quality information for health care decisions and quality improvement. Final Report. (Submitted by Mathematica Policy Research, under Contract No. 233-02-0086). Rockville, MD: Agency for Healthcare Research and Quality; May 6, 2005.

Lalonde B. The General Symptom Distress Scale: a home care outcome measure. QRB Qual Rev Bull 1987 Jul;13(7):243-50.

Lehman AF. Measures of quality of life among persons with severe and persistent mental disorders. Soc Psychiatry Psychiatr Epidemiol 1996 Mar;31(2):78-88.

Leonard KJ, Wilson D, Malott O. Measures of quality in long-term care facilities. Leadership Health Serv 2001;14 (2):1-8.

Leutz W, Capitman J. Met needs, unmet needs, and satisfaction among Social HMO members. J Aging Soc Policy 2007;19(1):1-19.

Mangione-Smith R, McGlynn EA. Assessing the quality of healthcare provided to children. Health Serv Res 1998 Oct;33(4 Pt 2):1059-90.

McCall N, Korb J, Petersons A, et al. Decreased home health use: does it decrease satisfaction? Med Care Res Rev 2004 Mar;61(1):64-88.

McGlynn EA, Asch SM, Adams J, et al. The quality of health care delivered to adults in the United States. New Engl J Med 2003 Jun 26;348(26):2635-45.

McGlynn EA. Selecting common measures of quality and systems performance. Med Care 2003 Jan;41(1 Suppl):I39-47.

Adding quality measures in home health. In Report to the Congress: increasing the value of Medicare. Washington, DC: MedPAC; June 2006.

The MEDSTAT Group. Indiana's quality improvement process. (Prepared under contract to the Centers for Medicare & Medicaid Services.) HCBS Quality Reports Vol. 1, No. 5, June 2003.

The MEDSTAT Group. Wisconsin's Consumer Outcomes Survey. (Prepared under contract to the Centers for Medicare & Medicaid Services.) HCBS Quality Reports Vol. 1, No.6, June 2003.

Milbank Memorial Fund. Implementing the Resident Assessment Instrument: case studies of policymaking for long-term care in eight countries. Milbank Memorial Fund Electronic Reports; May 2003.

Mitchell W, Sloper P. Quality indicators: disabled children's and parents' prioritizations and experiences of quality criteria when using different types of support services. Brit J Soc Work 2003;33(8):1063-80.

Mor V, Morris J, Lipsitz L, et al. The Q-Metrics system for long-term care outcomes management. Nutrition 1997 Mar;13(3):242-4.

Moran L, White E, Eales J, et al. Evaluating consumer satisfaction in residential continuing care settings. J Aging Soc Policy 2002;14(2):85-109.

Naglie G, Tomlinson G, Tansey C, et al. Utility-based quality of life measures in Alzheimer's disease. Qual Life Res 2006 May;15(4):631-43.

Quality assurance in home and community-based services waiver programs: a guide for States. Washington, DC: National Association of State Medicaid Directors; 2001.

The Council on Quality and Leadership in Supports for People With Disabilities personal outcomes chartbook. National Center on Outcomes Research; June 1999.

National Quality Forum compendium 2000-2005. Washington, DC: NQF; 2006.

Nota L, Soresi S, Perry J. Quality of life in adults with intellectual disability: the Evaluation of Quality of Life Instrument. J Intellect Disabil Res 2006 May;50 (Pt 5):371-85.

Office of Inspector General. States' requirements for Medicaid-funded personal care service attendants. Publication No. OEI-07-05-00250. Washington, DC: Department of Health and Human Services; 2006. Available at: http://oig.hhs.gov/oei/reports/oei-07-05-00250.pdf. [Plugin Software Help]

Office of Mental Retardation. Report of independent monitoring for quality in the Pennsylvania Mental Retardation System: 2002. Harrisburg: Pennsylvania Department of Public Welfare; 2002.

Oliva G, et al. Children with special health care needs (CSHCN): issues and options in selecting health indicators. (Funded through a cooperative agreement with the Maternal and Child Health Bureau, Award No. MCU-06D501). San Francisco: Family Health Outcomes Project; 1999.

Ottenbacher KJ, Msall ME, Lyon N, et al. The WeeFIM instrument: its utility in detecting change in children with developmental disabilities. Arch Phys Med Rehabil 2000 Oct;81(10):1317-26.

Palmer L, Lance K, Tobias C, et al. Integrated Care Program: recommended performance measures. Hamilton, NJ: Center for Health Care Strategies; 2006.

Palmer RH. Using clinical performance measures to drive quality improvement. Total Qual Manage 1997;8(5):305-11.

Peruselli C, Marinari M, Brivio B, et al. Evaluating a home palliative care service: development of indicators for a continuous quality improvement program. J Palliat Care 1997 Autumn;13(3):34-42.

Reeder PJ, Chen SP. A client satisfaction survey in home health care. J Nurs Qual Assur 1990 Nov;5(1):16-24.

Reuland CP, Bethell C. Measuring and evaluating developmental services: strategies and lessons from the ABCD II Consortium States. Child and Adolescent Health Measurement Initiative. (Funded by the Commonwealth Fund.) Portland, ME: National Academy of State Health Policy; 2006. Available at: http://www.nashp.org/files/Measuring_Dev_Ser_ABCDII.pdf. [Plugin Software Help]

Rohland B. Quality assessment in a Medicaid managed mental health care plan: an Iowa case study. Am J Orthopsychiatry 1999 Jul;69(3):410-4.

Ross EC. Managed behavioral health care premises, accountable systems of care, and AMBHA's PERMS. American Managed Behavioral Healthcare Association. Eval Rev 1997 Jun;21(3):318-21.

Schwab AJ, DiNitto DM, Aureala W, et al. The dimensions of client satisfaction with rehabilitation services. J Vocat Rehabil 1999;13(3):183-94.

Sheppard-Jones K, Thompson Prout H, Kleinert H. Quality of life dimensions for adults with developmental disabilities: a comparative study. Ment Retard 2005 Aug;43(4):281-91.

Singla AK, Kitch BT, Weissman JS, et al. Assessing patient safety culture: a review and synthesis of the measurement tools. J Patient Saf 2006;2(3):105-15.

Smith KL, Soriano TA, Boal J. Brief communication: national quality-of-care standards in home-based primary care. Ann Intern Med 2007 Feb 6;146(3):188-92.

Smith V, Gifford K, Ellis E, et al. Low Medicaid spending growth amid rebounding State revenues: results from a 50-State Medicaid budget survey, State fiscal years 2006 and 2007. Report No. 7569. Washington, DC: Kaiser Commission on Medicaid and the Uninsured; October 2006. Available at: http://www.kff.org/medicaid/7569.cfm.

Snell LP, Zhao Z, Lu C, et al. Study of Medicaid Home and Community-Based Services waiver program survey methodology. (Prepared by Mathematica Policy Research under Contract No. TLG98-014-1690.03 to The Lewin Group for the Centers for Medicare & Medicaid Services.) Baltimore, MD: CMS; 2005.

Spillman BC, Black KJ, Ormond BA. Beyond cash and counseling: the second generation of individual budget-based community long-term care programs for the elderly. (Prepared by the Urban Institute for the Kaiser Commission on Medicaid and the Uninsured.) Publication No. 7579. Washington, DC: Kaiser Commission on Medicaid and the Uninsured; January 19, 2007. Available at: http://www.kff.org/medicaid/upload/7579.pdf. [Plugin Software Help]

Stancliffe RJ. Proxy respondents and the reliability of the Quality of Life Questionnaire Empowerment factor. J Intellect Disabil Res 1999 Jun;43(Pt 3):185-93.

Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001 Aug;39(8):800-12.

Wagner C, De Bakker DH, Groenewegen PP. A measuring instrument for evaluation of quality systems. Int J Qual Health Care 1999 Apr;11(2):119-30.

White DL, Newton-Curtis L, Lyons KS. Development and initial testing of a measure of person-directed care. Gerontologist 2008 Jul;48 Spec. No. 1:114-23.

Wilde B, Starrin B, Larsson G, et al. Quality of care from a patient perspective-a grounded theory study. Scandinav J Caring Sci 1993;7:113-20.

Wilkinson JE, Culpepper L, Cerreto M. Screening tests for adults with intellectual disabilities. J Am Board Fam Med 2007 Jul-Aug;20(4):399-407.

Wu V, Gifford V, Asch S. Quality of care indicators for HIV/AIDS: a discussion paper for the Foundation for Accountability. Washington, DC: Foundation for Accountability; 1998.

Wunderlich GS, Kohler PO. Improving the quality of long-term care. Institute of Medicine. Washington, DC: National Academy Press; 2001. Available at: http://books.nap.edu/openbook.php?isbn=0309064988.

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List of Search Engines Included in Literature Search

Ageline

AgeLine is produced by the American Association of Retired Persons (AARP) and provides bibliographic coverage of social gerontology, which is the study of aging in social, psychological, health-related, and economic contexts. The delivery of health care for the older population and its associated costs and policies is particularly well covered, as are public policy, employment, and consumer issues.

Cumulative Index to Nursing & Allied Health Literature (CINAHL)

CINAHL is a comprehensive and authoritative source of information for nurses, allied health professionals, and others interested in health care. CINAHL covers all aspects of nursing and 17 allied health disciplines. Journals from biomedicine, alternative therapy, health sciences, health promotion, and consumer health are included.

GoogleScholar

Google Scholar is a search engine for scholarly literature. It aims to sort articles the way researchers do, weighing the full text of each article, the author, the publication in which the article appears, and the frequency of the article being cited in other scholarly literature. Results are listed in order of relevance.

Health Reference Center—Academic

Available 24 hours a day via the Internet, Health Reference Center—Academic on InfoTrac Web provides a one-stop, full service resource for health-related research. It provides an integrated collection of general interest health and fitness magazines, medical and professional periodicals, reference books, and pamphlets. Records are available in a combination of indexed, abstract, or full-text formats. The site is designed for nursing and allied health students, as well as consumer health researchers.

Medline

Medline, produced by the U.S. National Library of Medicine (NLM), is one of the major sources for biomedical literature. Medline indexes international literature in medicine, dentistry, and nursing. It uses NLM's controlled vocabulary, MeSH (Medical Subject Headings). Approximately 400,000 records are added yearly, with more than 85 percent in English.

New York Academy of Medicine Grey Literature Reports

New York Academy of Medicine Grey Literature Report is a bimonthly publication of The New York Academy of Medicine Library alerting readers to new grey literature publications in health services research and selected public health topics. In addition to this alert service, all resources are added and indexed in an online catalog.

PsychINFO

PsycINFO is an electronic bibliographic database that provides abstracts and citations of scholarly literature in the behavioral sciences and mental health. The database includes material of relevance to psychologists and professionals in related fields such as psychiatry, management, business, education, social science, neuroscience, law, medicine, and social work. The database had more than 2.3 million records as of April 2007, including references from more than 2,000 relevant journals.

Sage Database of Social Research Methods

Sage Database of Social Research Methods (SRM) includes more than 45,000 references, most with abstracts, to the literature on social and behavioral research methodology, statistical analysis, and computer software. International in scope, the SRM Database includes journal articles, books, research reports, and proceedings from 1970 to the present, with 10 updates a year.

Keywords Entered*

• Assisted living.
• Client functioning.
• Client satisfaction.
• Day programs.
• Experience.
• Group home.
• HCBS.
• Measurement.
• Medicaid.
• Mental health/mental illness.
• Partial hospitalization.
• Performance indicators.
• Performance measures.
• Performance outcomes.
• Program performance.
• Psychosocial rehabilitation.
• Quality.
• Quality improvement.
• Quality of life.
• Residential care.
• Transportation.
• Unmet need.

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* Note: Modifiers and keywords differed according to the search engine used and according to number of hits for each keyword. For example, some search engines provide suggested modifier words, while some do not. Some keywords were entered as groups of words and some standalone, depending on the number of hits received.

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