Aaronson, N.K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N.J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international trials in oncology. Journal of the National Cancer Institute, 85, 365–375.
Addington-Hall, J. (2002). Research sensitivities to palliative care patients. European Journal of Cancer Care, 11, 220–224.
Addington-Hall, J.M., MacDonald, L.D., Anderson, H.R., Chamberlain, J., Freeling, P., Bland, J.M., et al. (1992). Randomized controlled trial of effects of coordinating care for terminally ill cancer patients. British Medical Journal, 305, 1317–1322.
Ahronheim, J.C., Morrison, R.S., Morris, J., Baskin, S., & Meier, D.E. (2000). Palliative care in advanced dementia: A randomized controlled trial and descriptive analysis. Journal of Palliative Medicine, 3, 265–273.
Aikman, P.J., Thiel, E.C., Martin, D.K., & Singer, P.A. (1999). Proxy, health, and personal care preferences: Implications for end-of life care. Cambridge Quarterly of Healthcare Ethics, 8, 200–210.
Bachmann, P., Marti-Massoud, C., Blanc-Vincent, M.P., Desport, J.C., Colomb, V., Dieu, L., et al. (2003). Summary version of the Standards, Options and Recommendations for palliative or terminal nutrition in adults with progressive cancer. British Journal of Cancer, 89(Suppl. 1), S107–S110.
Baker, T.H. (1981). A cost analysis of three hospice programs. Los Angeles: Kaiser Permanente Medical Care Program.
Benoliel, J.Q., McCorkle, R., & Young, K. (1980). Development of a social dependency scale. Research in Nursing and Health, 3, 3–10.
Bergner, M., Bobbitt, R.A., Carter, W.B., & Gilson, B.S. (1981). The Sickness Impact Profile: Development and final revision of a health status measure. Medical Care, 9, 787–805.
Best, L., Simmonds, P., Baughan, C., Buchanan, R., Davis, C., Fentiman, I., et al. (2005). Palliative chemotherapy for advanced or metastatic colorectal cancer. Retrieved 14 November 2005 from Cochrane Database of Systematic Reviews, 4: http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001545/frame.html.
Browne, G., Arpin, K., Corey, P., Fitch, M., & Gafni, A. (1990). Individual correlates of health service utilization and the cost of poor adjustment to chronic illness. Medical Care, 28, 43–58.
Caraceni, A., Cherny, N., Fainsinger, R., Kaasa, S., Poulain, P., Dadbruch, L., et al. (2002). Pain measurement tools and methods in clinical research in palliative care: Recommendations of an expert working group of the European Association of Palliative Care. Journal of Pain and Symptom Management, 23, 239–255.
Casarett, D.J. (2003). Assessing decision-making capacity in the setting of palliative care research. Journal of Pain and Symptom Management, 25, S6–S13.
Chan, E.K., O'Neill, I., McKenzie, M., Love, A., & Kissane, D.W. (2004). What works for therapists conducting family meetings: Treatment integrity in family-focused grief therapy during palliative care and bereavement. Journal of Pain and Symptom Management, 27, 502–512.
Connor, S.R. (1992). Denial in terminal illness: To intervene or not to intervene. Hospice Journal, 8, 1–15.
Cooper, P., Osborn, M., Gath, D., & Feggetter, F. (1982). Evaluation of a modified self-report measure of social adjustment. British Journal of Psychiatry, 141, 69–75.
Coppola, K.M., Ditto, P.H., Danks, J.H., & Smucker, W.D. (2001). Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives. Archives of Internal Medicine, 161, 431–440.
Cornbleet, M.A., Campbell, P., Murray, S., Stevenson, M., & Bond, S. (2002). Patient-held records in cancer and palliative care: A randomized, prospective trial. Palliative Medicine, 16, 205–212.
Daniels, L.E., & Exley, C. (2001). Preparation, information and liaison: Conducting successful research in palliative care. International Journal of Palliative Nursing, 7(4), 192–197.
Derogatis, L.R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595–605.
Detmar, S.B., Muller, J., Schornagel, J.H., Wever, L.D.V., & Aaronson, N.K. (2002). Health-related quality-of-life assessment and patient-physician communication. A randomized controlled trial. Journal of the American Medical Association, 288, 3027–3034.
Ditto, P.H., Danks, J.H., Smucker, W.D., Bookwala, J., Coppola, K.M., Dresser, R., et al. (2001). Advance directives as acts of communication: A randomized controlled trial. Archives of Internal Medicine, 161, 421–430.
Dubler, N.N. (1998). The collision of confinement and care: End-of-life care in prisons and jails. The Journal of Law, Medicine & Ethics, 26, 149–156.
Duke University Center for Study of Aging and Human Development (1978). Multidimensional functional assessment: The OARS Methodology. Durham, NC: Duke University.
Emmanuel, L.L., & Emmanuel, E.J. (1989). The Medical Directive: a new comprehensive advance care document. Journal of the American Medical Association, 261, 3288–3293.
Epstein, N.B., Baldwin, L.M., & Bishop, D.S. (1983). The McMaster Family Assessment Device. Journal of Marriage and Family Therapy, 9, 171–180.
Evans, R., Stone, D., & Elwyn, G. (2003). Organizing palliative care for rural populations: A systematic review of the evidence. Family Practice, 20, 304–310.
Fishman, B., Pasternak, S., Wallenstein, S.L., Houde, R.W., Holland, J.C., & Foley, K.M. (1987). The Memorial Pain Assessment Card: A valid instrument for the evaluation of cancer pain. Cancer, 60, 1151–1158.
Goldstein, N.E., & Morrison, R.S. (2005). The intersection between geriatrics and palliative care: A call for a new research agenda. Journal of the American Geriatric Society, 53, 1593–1598.
Grande, G., & Todd, C. (2000). Issues in research. Why are trials in palliative care so difficult? Palliative Medicine, 14, 69–74.
Grande, G.E., Todd, C.J., Barclay, S.I.G., & Farquhar, M.C. (1999). Does hospital at home for palliative care facilitate death at home? Randomized controlled trial. British Medical Journal, 319, 1472–1475.
Grande, G.E., Todd, C.J., Barclay, S.I.G., & Farquhar, M.C. (2000). A randomized controlled trial of a hospital at home service for the terminally ill. Palliative Medicine, 14, 375–385.
Grobe, S.J. (1995). Nursing intervention lexicon and taxonomy. In Lang, Norma (Ed.), An emerging framework: data system advances for clinical nursing practice (pp. 169–176). Washington, DC: American Nurses Publishing.
Hainsworth, D.S. (1996). The effect of death education on attitudes of hospital nurses toward care of the dying. Oncology Nursing Forum, 23, 963–967.
Hanks, G.W., Robbins, M., Sharp, D., Forbes, K., Done, K., Peters, T.J., et al. (2002). The imPaCT study: A randomized controlled trial to evaluate a hospital palliative care team. British Journal of Cancer, 87, 733–739.
Hearn, J., & Higginson, I.J. (1998). Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliative Medicine, 12, 317–332.
Horowitz, M.J., Wilner, N., & Alvarez, W. (1979). Impact of Event scale: A measure of subjective stress. Psychosomatic Medicine, 41, 209–218.
Hudson, P., Aranda, S., & McMurray, N. (2001). Randomized controlled trials in palliative care: Overcoming the obstacles. International Journal of Palliative Nursing, 7, 427–434.
Hughes, R.A., & Addington-Hall, J.A. (2005). Feeding back survey research findings within palliative care: Findings from qualitative research. International Journal of Nursing Studies, 42, 449–456.
Hughes, S.L., Cummings, J., Weaver, F., Manheim, L., Braun, B., & Conrad, K. (1992). A randomized trial of the cost effectiveness of VA hospital-based home care for the terminally ill. Health Services Research, 26, 801–817.
Hughes, S.L., Weaver, F.M., Giobbie-Hurder, A., Manheim, L., Henderson, W., Kubal, J.D., et al. (2000). Effectiveness of team-managed home-based primary care: A randomized multicenter trial. Journal of the American Medical Association, 284, 2877–2885.
Jordhøy, M.S., Fayers, P.M., Ahlner-Elmqvist, M., & Kaasa, S. (2002). Lack of concealment may lead to selection bias in cluster randomized trials of palliative care. Palliative Medicine, 16, 43–49.
Jordhøy, M.S., Fayers, P., Loge, J.H., Ahlner-Elmqvist, M., & Kaasa, S. (2001). Quality of life in palliative cancer care: Results from a cluster randomized trial. Journal of Clinical Oncology, 19, 3884–3894.
Jordhøy, M.S., Fayers, P., Saltnes, T., Ahlner-Elmqvist, M., Jannert, M., & Kaasa, S. (2000). A palliative-care intervention and death at home: A cluster randomized trial. Lancet, 356, 888–893.
Kaasa, S., & De Conno, F. (2001). Palliative care research. European Journal of Cancer, 37, S153–S159.
Kaasa, S., & Loge, J.H. (2002). Quality-of-life assessment in palliative care. Lancet Oncology, 3, 175–182.
Kaasa, S., Malt, U., Hagen, S., Wist, E., Moum, T., & Kvikstad, A. (1993). Psychological distress in cancer patients with advanced disease. Oncology, 27, 193–197.
Kane, R., Bernstein, L., Wales, J., & Rothenberg, R. (1985). Hospice effectiveness in controlling pain. Journal of the American Medical Association, 253, 2683–2686.
Kane, R., Klein, S.J., Bernstein, L., & Rothenberg, R. (1985). Hospice role in alleviating the emotional stress of terminal patients and their families. Medical Care, 23, 189–197.
Kane, R., Klein, S.J., Bernstein, L., & Rothenberg, R. (1986). The role of hospice in reducing the impact of bereavement. Journal of Chronic Diseases, 39, 735–742.
Kane, R.L., Wales, J., Bernstein, L., Leibowitz, A., & Kaplan, S. (1984, Apr.). A randomized controlled trial of hospice care. Lancet, 21, 890–894.
Katz, S., Ford, A., Moskowitz, R., Jackson, B., Jaffe, M., & Cleveland, M.A. (1963). The Index of ADL: A standardized measure of biological and psychological function. Journal of the American Medical Association, 185, 914–919.
Kissane, D.W., & Bloch, S. (1992). Family-Focused Grief Therapy: A model of family-centred care during palliative care and bereavement. Buckingham, UK: Open University Press.
Kissane, D.W., Grabsch, B., Clarke, D.M., Christie, G., Clifton, D., Gold, S., et al. (2004). Supportive-expressive group therapy: The transformation of existential ambivalence into creative living while enhancing adherence to anti-cancer therapies. Psycho-Oncology, 13, 755–768.
Kissane, D.W., McKenzie, M., McKenzie, D.P., Forbes, A., O'Neill, I., & Bloch, S. (2003). Psychosocial morbidity associated with patters of family functioning in palliative care: Baseline data from the Family-Focused Grief Therapy controlled trial. Palliative Medicine, 17, 527–537.
Kristjanson, L.J. (1993). Validity and reliability testing of the FAMCARE scale: Measuring family satisfaction with advanced cancer care. Social Science and Medicine, 36, 693–701.
Latimer, E.J., Crabb, M.R., Roberts, J.G., Ewen, M., & Roberts, J. (1998). The Patient Care Travelling Record in palliative care: Effectiveness and efficiency. Journal of Pain and Symptom Management, 16, 41–51.
Lawton, M.P. (1975a). Assessing the competence of older people. In Kent, D., Kastenbaum, R., & Sherwood, S. (Eds.), Research Planning and Action for the Elderly. New York: Behavioral.
Lawton, M.P. (1975b). The Philadelphia Geriatric Center Morale Scale: A revision. Journal of Gerontology, 30, 85–89.
Lawton, M.P., Moss, M., Fulcomer, M., & Kleban, M.H. (1982). A research and service-oriented multilevel assessment instrument. Journal of Gerontology, 37, 91–99.
Lecouturier, J., Crack, L., Mannix, K., Hall, R., & Bond, S. (2002). Evaluation of a patient-held record for patients with cancer. European Journal of Cancer, 11, 114–121.
MacAdman, D.B., & Smith, M. (1987). An initial assessment of suffering in terminal illness. Palliative Medicine, 1, 37–47.
Mann, S.L., Peterson, A.V. Jr., Marek, P.M., & Kealey, K.A. (2000). The Hutchinson Smoking Prevention Project trial: Design and baseline characteristics. Preventive Medicine, 30, 485–495.
Mazzocato, C., Sweeney, C., & Bruera, E. (2001). Clinical research in palliative care: Choice of trial design. Palliative Medicine, 15, 261–264.
McCaffree, K.M., & Harkins, E.M. (1976). Final report for evaluation of nursing home care. Seattle, WA: Battelle Human Affairs Research Centers.
McCorkle, R., Benoliel, J.Q., Donaldson, G., Georgiadou, F., Moinpour, C., & Goodell, B. (1989). A randomized clinical trial of home nursing care for lung cancer patients. Cancer, 64, 1375–1382.
McCorkle, R., Hughes, L., & Levinson, B. (1998). Nursing interventions for newly diagnosed older cancer patients facing terminal illness. Journal of Palliative Care, 14, 39–45.
McCorkle, R., & Quint-Benoliel, J. (1983). Symptom distress, current concerns and mood disturbance after diagnosis of life-threatening disease. Social Science and Medicine, 17, 431–438.
McCusker, J. (1984). Development of scales to measure satisfaction and preferences regarding long-term and terminal care. Medical Care, 22, 476–493.
McNair, D.R., Lorr, M., & Droppleman, L.. POMS 1992: Profile of mood states. San Diego, CA: Educational and Testing Service.
McWhinney, I.R., Bass, M.J., & Donner, A. (1994). Evaluation of a palliative care service: Problems and pitfalls. British Medical Journal, 309, 1430–1344.
Melzack, R. (1975). The McGill Pain Questionnaire: Major properties and scoring methods. Pain, 1, 277–299.
Mishel, M.H. (1984). Perceived uncertainty and stress and illness. Research in Nursing and Health, 7, 163–171.
Moher, D., Schulz, K.F., & Altman, D., for the CONSORT Group (2001). The CONSORT statement: Revised recommendations for improving the quality of reports of parallel-group randomized trials. Journal of the American Medical Association, 285, 1987–1991.
Moos, R.H., & Moos, B.S. (1981). Family environment scale manual. Palo Alto, CA: Consulting Psychologists Press.
Morrison, R.S. (2005). Palliative care outcomes research: The next steps. Journal of Palliative Medicine, 8, 13–16.
Murphy, P., Kreling, B., Kathryn, E., Stevens, M., Lynn, J., & Dulac, J. (2000). Description of the SUPPORT intervention. Journal of the American Geriatric Society, 48(Suppl.), S154–S161.
National Institutes of Health (2005). End-of-life care. National Institutes of Health statement on the state of the science. AWOHNN Lifelines, 9, 15–22.
Nelson, E., Wasson, J., Kirk, J., Keller, A., Clark, D., Dietrich, A., et al. (1987). Assessment of function in routine clinical practice: Description of the COOP chart method and preliminary findings. Journal of Chronic Diseases, 40(Suppl. 1), 55S–69S.
Oleson, T.D., Bresler, D.E. (1979). California pain assessment profile. In Oleson, T.D., & Turbo, R. (Eds.), Free yourself from pain. New York: Simon and Schuster.
Pearlman, R., Starks, H., Cain, K., Cole, W., Rosengren, D., & Patrick, D. (1999). Your life, your choices—Planning for future medical decisions: How to prepare a personalized living will. Washington, DC: Department of Veterans Affairs, Veterans Health Administration.
Peterson, A.V. Jr., Kealey, K.A., Mann, S.L., Marek, P.M., & Sarason, I.G. (2000). Hutchinson Smoking Prevention Project: Long-term randomized trial in school-based tobacco use prevention—Results on smoking. Journal of the National Cancer Institute, 92, 1979–1991.
Piggott, M., & McGee, H. (2004). Has CONSORT improved the reporting of randomized controlled trials in the palliative care literature? A systematic review. Palliative Medicine, 18, 32–38.
Radloff, L.S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.
Raftery, J.P., Addington-Hall, J.M., MacDonald, L.D., Anderson, H.R., Bland, J.M., Chamberlain, J., et al. (1996). A randomized controlled trial of the cost-effectiveness of a district co-ordinating service for terminally ill cancer patients. Palliative Medicine, 10, 151–161.
Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24, 653–655.
Rinck, G.C., van den Bos, G.A.M., Kleijnene, J., de Haes, H.J.C.J.M., Schade, E., & Venhof, C.H.N. (1997). Methodological issues in effectiveness research on palliative cancer care: A systematic review. Journal of Clinical Oncology, 15, 1697–1707.
Ringdal, G.I., Jordhøy, M.S., & Kaasa, S. (2002). Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. Journal of Pain and Symptom Management, 24, 53–63.
Robinson, B.E., & Pham, H. (1996). Cost-effectiveness of hospice care. Clinics in Geriatric Medicine, 12(2), 417–428.
Salisbury, C., Bosanquet, N., Wilkinson, E.K., Franks, P.J., Kite, S., Lorentzon, M., et al. (1999). The impact of different models of specialist palliative care on patients' quality of life: A systematic literature review. Palliative Medicine, 13, 3–17.
Scholten, J.H.G., & van Weel, C. (1992). Functional status assessment in family practice. Lelystad: MediTekst.
Schwartz, C.E., Wheeler, H.B., Hammes, B., Basque, N., Edmunds, J., Reed, G., et al. (2002). Early intervention in planning end-of-life care with ambulatory geriatric patients. Archives of Internal Medicine, 162, 1611–1618.
Scogin, F., Beutler, L., Corbishley, A., & Hamblin, D. (1988). Reliability and validity of the Beck Depression Inventory with older adults. Journal of Clinical Psychology, 44, 853–857.
Sherwood, S.J., Morris, J., Mor, V., & Gutkin, C. (1977). Compendium of measures for describing and assessing long term care populations. Boston, MA: Hebrew Rehabilitation Center for the Aged.
Smeenk, W.J.M., van Haastregt, J.C.M., de Witte, L.P., & Crebolder, H.F.J.M. (1998). Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: Systematic review. British Medical Journal, 316, 1939–1944.
Smilkstein, G., Ashworth, C., & Montano, D. (1982). Validity and reliability of the Family APGAR as a test of family function. Journal of Family Practice, 15, 303–311.
Smith, W.B. (2004). Research methodology: Implications for CAM pain research. Clinical Journal of Pain, 20, 3–7.
Spitzer, W.O., Dobson, A.L., Hall, J., Chamberlain, E., Levi, J., Shepherd, R., et al. (1980). Measuring the quality of life of cancer patients: A concise QL-index for use by physicians. Journal of Chronic Diseases, 34, 585–597.
Sprangers, M.A.G., Van Dam, F.S.A.M., Broersen, J., Lodder, L., Wever, L., Visser, M.R., et al. (1999). Revealing response shift in longitudinal research on fatigue: The use of the then test approach. Acta Oncologica, 38, 709–718.
Stephens, R.J., Hopwood, P., Girling, D.J., & Machin, D. (1997). Randomized trials with quality of life endpoints: Are doctors' ratings of patients' physical symptoms interchangeable with patients' self-rating? Quality of Life Research, 6, 225–236.
SUPPORT Principal Investigators (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Medical Association, 274(20), 1591–1598.
Tassinari, D., Maltoni, M., Sartori, S., Fantini, M., Poggi, B., & Ravaioli, A. (2005). Outcome research in palliative care: Could it represent a new dimension of clinical research or clinical practice? Support Care Cancer, 13, 176–181.
van Boxel, P., Anderson, K., & Regnard, C. (2003). The effectiveness of palliative care education delivered by videoconferencing compared with face-to-face delivery. Palliative Medicine, 17, 344–358.
Wales, J., Kane, R., Robbins, S., Bernstein, L., & Krasnow, R. (1983). UCLA hospice evaluation study. Medical Care, 21, 734–744.
Waltman, N.L. (1990). Attitudes, subjective norms, and behavioral intentions of nurses toward dying patients and their families. Oncology Nursing Forum, 17(Suppl. 3), 55–62.
Ware, J. (1976). Scales for measuring general health perceptions. Health Services Research, 11, 396–415.
Ware, J.E. Jr., Johnston, S.A., Davies-Avery, A., & Brook, R.H. (1987). Conceptualization and measurement of health status for adults in the health insurance study: Vol. 3. Mental health (R-1987/3-HEW). Santa Monica, CA: Rand Corporation.
Ware, J.E., Kosinski, M., Wright, W.R., & Davies, A.R. (1983). Defining and measuring patient satisfaction with medical care. Evaluation and Program Planning, 6, 247–263.
Ware, J.E., & Sherbourne, C.D. (1992). The MOS 36-item short-form health survey. Medical Care, 30, 473–481.
Weinberger, M., Smith, D.M., Katz, B.P., & Moore, P.S. (1988). The cost-effectiveness of intensive postdischarge care. Medical Care, 26, 1092–1102.
Wilkinson, E.K., Salisbury, C., Bosanquet, N., Franks, P.J., Kite, S., Lorentzon, M., et al. (1999). Patient and carer preference for, and satisfaction with, specialist models of palliative care: A systematic literature review. Palliative Medicine, 13, 197–216.
Zigmond, A.S., & Snaith, R.P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370.
Zimmer, J.G., Groth-Juncker, A., & McCusker, J. (1985). A randomized controlled study of a home health care team. American Journal of Public Health, 75, 134–141.