Outcomes: Moving the yardstick forward

Initiatives extend science of measurement

Some of the more recent advances in hospice outcomes measurement are listed below:

· Toolkit of Instruments to Measure End-of-Life Care (TIME).

Under the leadership of Joan M. Teno, MD, associate professor of community health at Brown University in Providence, RI, a group of hospice and outcomes experts, calling themselves the Palliative Care Outcomes Collaborative, have been meeting to review existing outcomes measurement tools for end-of-life care and to identify areas where more research and development are needed.

Teno is now constructing a Web page that will contain various measurement tools, reviews and analyses of their strengths and weaknesses in the form of "briefing books," and bibliographies. A number of the draft briefing books are now available over the Internet, although Teno is seeking additional funding to tie these documents together better and to make the Web page a more user-friendly interface. Eventually, Teno says, providers will be able to go to the Toolkit Web page, select from the outcomes tools, and create a database for measuring and compiling them. "What we have now is just a lot of information," she says.

An example of the kinds of draft reviews that can be found on the Toolkit home page is inserted in this newsletter. The address is: http://www.chcr.brown.edu/pcoc/toolkit.htm. For more information, contact Teno at (401) 863-1606; via e-mail at Joan_Teno@brown.edu; or at Brown University, Box GB219, Providence, RI 02912.

· Missoula-Vitas Quality of Life Index (MVQOLI).

Based on a conceptual model of growth and development at the end of life pioneered by Missoula, MT, hospice physician Ira Byock, MD, and the research capacities of the Miami, FL-based Vitas Healthcare Corporation hospice chain, this index has been designed to assess the self-identified quality of dying patients' lives. It taps five major domains - symptoms, functioning, interpersonal relationships, well-being, and the transcendent or transpersonal realm - and allows patients to indicate which of these realms is most important to them at this time in their lives. (See an excerpt from the index on p. 43.)

Available in 15- and 25-item versions, as well as a 5-item short form that doesn't weigh the items' relative importance, the MVQOLI has been going through testing and validation in Vitas hospices and other sites, with results recently submitted for publication. Early this year, Vitas announced that it will soon make the index available for use by other hospices within limits.

Byock and Melanie Merriman, PhD, Vitas' director of outcomes management and research, sent a letter to hospices that have expressed interest in the index. The letter states, in part: "Your staff will require training in the use of the MVQOLI as an assessment, care planning and outcomes measurement tool. The hospice must be willing to devote some time and energy (and probably some dollars) to the training and implementation process."

These hospices were asked to express their interest in using the copyrighted instrument. Permission to use it may require "a modest licensing fee," as well as signing an agreement to obtain training in its use, and to use the instrument as provided without modification. "Our intention is to make the instrument widely available while ensuring that programs are able to use it effectively," the letter states.

The first training is planned as a "train the trainer" pre-conference seminar, May 30-31, before the National Hospice Organization (NHO) management and leadership conference in St. Louis. Staff from the Hospice Institute of the Florida Suncoast will help teach the class. Attendees will receive a MVQOLI toolkit with print and computer resources, and all information necessary to train staff in how to administer the index. Attendees also will receive a license to use the index as part of the $500 training and toolkit fee.

Advance registration is required and participation is limited. For information on the seminar, contact the Hospice Institute at (813) 586-4432, ext. 2866. For other information on the index, contact Joanne Martin at Vitas, 100 S. Biscayne Blvd., #1500, Miami, FL 33131. Telephone: (305) 374-4143.

· The Hospice Consortium on Quality of Care.

The American Hospice Foundation (AHF) in Washington, DC, has convened a group of hospice experts to develop a hospice consumer report card. Report cards are increasingly being used in the health care industry to summarize provider performance on selected indicators and to help guide consumers and practitioners through the system's complexities, especially where competition exists between providers. AHF's report card project aims to address consumer education, hospice provider accountability, and improvement in the quality of hospice care, explains Naomi Naierman, AHF's president and CEO.

All constituencies get a say

Research will be conducted with focus groups of hospice providers, surviving family caregivers, and hospital discharge planners. Each group will be asked to specify what good hospice care is, with the goal of identifying a core set of measures that are important to all three constituencies and can be easily collected. The first set of focus group results should be reported within a few months. The instrument will eventually be field-tested, although a timetable for testing has not been set, Naierman says.

For information, contact Naierman at AHF, 1130 Connecticut Ave. NW, #700, Washington, DC 20036. Telephone: (202) 223-0204.

· Ohio Hospice Organization (OHO).

Forty-five (out of 85) Ohio hospices are now participating in an outcomes data project to collect standardized, comparable data on a small number of key items. OHO's project grew out of statewide provider summits in 1994 and 1995, which evolved into a labor-intensive structure of standing committees and task forces to develop appropriate measures and build consensus on using them. The hospices currently are assessing pain on a 0 to 10 scale for every admission, and measuring it again in 24 hours if the assessed level is 3 or higher or if it is unacceptable to the patient. They are also using the short form of MVQOLI on admission and at 14 days.

OHO executive director Bernice Wilson, RN, MS, emphasizes that what OHO has achieved is not a panacea for other hospices to just "plug and play." She hopes to see other state hospice associations follow a similar path of planning and consensus building, and would be happy to offer advice on how to go about this. Contact her (until April 9, when she retires) or Melinda Garverick at OHO, 2400 Briggs Rd., Columbus, OH 43223. Telephone: (614) 274-9513.

· National Hospice Organization (NHO).

NHO's Research Committee, under the directorship of Stephen Connor, PhD, Hospice of Central Kentucky in Elizabethtown, has been testing outcomes measurement tools in the areas of pain management and family survivor satisfaction and has been periodically sharing compiled results through NHO's newsletter. The Research Committee is now pursuing a more ambitious outcomes initiative.

NHO seeks to develop protocols

Connor recently submitted a grant application to the Robert Wood Johnson Foundation, on behalf of NHO and the Salt Lake City-based Institute for Clinical Outcomes Research (ICOR), to mount a large-scale, 24-month outcomes and clinical practice improvement project. At press time, the foundation had not yet announced a decision on whether to give the study a green light.

NHO's project proposes to evaluate hospice admission decisions and to develop research-based "dynamic protocols" for practice, derived from actual clinical experience. The project also would utilize NHO's condition pathway document (see resource information below) and comprehensive disease severity index software developed by Connor's co-principal investigator, Susan D. Horn, PhD, senior scientist at ICOR.

Extensive retrospective chart reviews would be done for 2,000 patients at 15 hospice sites throughout the country, using multiple regression analyses to identify the most effective practices leading to the best outcomes for these patients. Participating sites would be chosen from a list of those that have expressed an interest in participating in multisite research, and that have the resources for extensive data gathering. A national advisory board also would be formed.

"In effect, we'd be deconstructing hospice clinical practice," Connor says. The study design would examine patient characteristics, care processes, and outcomes in order to more precisely examine what effects hospice care has on patient outcomes. All three domains are needed in order to establish the significance of the results, he says, because hospice care is not an appropriate setting for true randomized, controlled clinical trials. "It would also give us good seminal data on what's happening in hospice, and start to answer the question, `How good is hospice care?'"

For more information, contact Connor at Hospice of Central Kentucky, P.O. Box 2149, Elizabethtown, KY 42702. Telephone: (502) 737-6300.

· Other resources: To order the National Hospice Organization's "A Pathway for Patients and Families Facing Terminal Illness," call the NHO Store at (800) 646-6460. The Edmonton, Alberta, Palliative Care Program also has a Web page with downloadable outcomes tools at: www.palliative.org. A list of systems meeting initial screening criteria for the Joint Commission on Accreditation of Healthcare Organizations' ORYX initiative is available at: www.jcaho.org.