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A Literature Review of Randomized Controlled Trials of the Organization of Care at the End of Life

Published online by Cambridge University Press:  31 March 2010

Roger E. Thomas ,
Donna Wilson  and
Sam Sheps
Roger E. Thomas*
Affiliation:
Faculty of Medicine, University of Calgary
Donna Wilson
Affiliation:
Faculty of Nursing, University of Alberta
Sam Sheps
Affiliation:
Faculty of Medicine, University of British Columbia
*
Requests for offprints should be sent to: / Les demandes de tirés-à-part doivent être addressées à : Roger E. Thomas, MD, PhD, CCFP, MRCGP, Professor, Department of Family Medicine, Faculty of Medicine, University of Calgary, Calgary, AB T2N 1M7. ([email protected])
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Abstract

We searched nine electronic databases for randomized controlled trials (RCTs) about care at the end of life and found 23 RCTs. We assessed their quality using the criteria of the Cochrane Collaboration. The RCTs researched three themes: (a) the effect of providing palliative care through dedicated community teams on quality of life, on the management of symptoms, on satisfaction with care, on the duration of the palliative period, and on place of death; (b) the effects of specific palliative care interventions—advanced planning of care for the end of life, patient-held records, providing quality-of-life data to patients and physicians, grief education for relatives, palliative care education for nurses, and palliative care for patients with dementia; and (c) the costs of palliative compared to conventional care. We identify difficulties in conducting research on palliative care and solutions and discuss future possible research themes.

Résumé

Nous avons entrepris des recherches en neuf bases de données électroniques pour des essais randomisés au sujet des derniers mois de vie, et nous en avons trouvé 23. Nous avons examiné leur qualité avec les critères de la Collaboration Cochrane. Les essais randomisés ont étudié trois thèmes: (a) l'effet de la provision des soins palliatifs par des équipes spécialisés sur la qualité de vie, l'amélioration des symptômes, la satisfaction avec les soins, la durée des soins, et le lieu de la mort; (b) les effets des interventions de soins palliatifs spécifiques ; planification avancée des soins pour les derniers mois de vie, des dossiers tenus par les patients, la provision d'information aux patients et aux médecins, l'éducation pour améliorer le chagrin des proches, l'éducation sur les soins palliatifs pour les infirmières, et les soins palliatifs pour les patients avec la démence ; et (c) les coûts des soins palliatifs en comparaison aux soins conventionnels. Nous avons identifié des difficultés de recherche sur les soins palliatifs et des solutions, et des thèmes de recherche possibles pour l'avenir.

Keywords

agingrandomized controlled trialspalliative careend-of-lifevieillissementessais contrôlés et randomiséssoins palliatifsen fin de vie
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 25 , Issue 3 , Fall/Automne 2006 , pp. 271 - 293
Copyright
Copyright © Canadian Association on Gerontology 2006

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References

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.Google Scholar
Addington-Hall, J. (2002). Research sensitivities to palliative care patients. European Journal of Cancer Care, 11, 220–224.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Baker, T.H. (1981). A cost analysis of three hospice programs. Los Angeles: Kaiser Permanente Medical Care Program.Google Scholar
Benoliel, J.Q., McCorkle, R., & Young, K. (1980). Development of a social dependency scale. Research in Nursing and Health, 3, 3–10.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Casarett, D.J. (2003). Assessing decision-making capacity in the setting of palliative care research. Journal of Pain and Symptom Management, 25, S6–S13.Google Scholar
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.Google Scholar
Cochrane Collaboration. Cochrane handbook for systematic reviews. (2006). Retrieved 9 July 2006 from www.cochrane.dk/cochrane/handbook/hbook/htm.Google Scholar
Connor, S.R. (1992). Denial in terminal illness: To intervene or not to intervene. Hospice Journal, 8, 1–15.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Derogatis, L.R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595–605.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Duke University Center for Study of Aging and Human Development (1978). Multidimensional functional assessment: The OARS Methodology. Durham, NC: Duke University.Google Scholar
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.Google Scholar
Epstein, N.B., Baldwin, L.M., & Bishop, D.S. (1983). The McMaster Family Assessment Device. Journal of Marriage and Family Therapy, 9, 171–180.CrossRefGoogle Scholar
Evans, R., Stone, D., & Elwyn, G. (2003). Organizing palliative care for rural populations: A systematic review of the evidence. Family Practice, 20, 304–310.Google Scholar
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, 1151–1158.3.0.CO;2-G>CrossRefGoogle Scholar
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.Google Scholar
Grande, G., & Todd, C. (2000). Issues in research. Why are trials in palliative care so difficult? Palliative Medicine, 14, 69–74.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Horowitz, M.J., Wilner, N., & Alvarez, W. (1979). Impact of Event scale: A measure of subjective stress. Psychosomatic Medicine, 41, 209–218.Google Scholar
Hudson, P., Aranda, S., & McMurray, N. (2001). Randomized controlled trials in palliative care: Overcoming the obstacles. International Journal of Palliative Nursing, 7, 427–434.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Kaasa, S., & De Conno, F. (2001). Palliative care research. European Journal of Cancer, 37, S153–S159.CrossRefGoogle ScholarPubMed
Kaasa, S., & Loge, J.H. (2002). Quality-of-life assessment in palliative care. Lancet Oncology, 3, 175–182.Google Scholar
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.Google Scholar
Kane, R., Bernstein, L., Wales, J., & Rothenberg, R. (1985). Hospice effectiveness in controlling pain. Journal of the American Medical Association, 253, 2683–2686.Google Scholar
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.Google Scholar
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.Google Scholar
Kane, R.L., Wales, J., Bernstein, L., Leibowitz, A., & Kaplan, S. (1984, Apr.). A randomized controlled trial of hospice care. Lancet, 21, 890–894.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.Google Scholar
Lawton, M.P. (1975b). The Philadelphia Geriatric Center Morale Scale: A revision. Journal of Gerontology, 30, 85–89.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
MacAdman, D.B., & Smith, M. (1987). An initial assessment of suffering in terminal illness. Palliative Medicine, 1, 37–47.Google Scholar
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.Google Scholar
Mazzocato, C., Sweeney, C., & Bruera, E. (2001). Clinical research in palliative care: Choice of trial design. Palliative Medicine, 15, 261–264.Google Scholar
McCaffree, K.M., & Harkins, E.M. (1976). Final report for evaluation of nursing home care. Seattle, WA: Battelle Human Affairs Research Centers.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
McCusker, J. (1984). Development of scales to measure satisfaction and preferences regarding long-term and terminal care. Medical Care, 22, 476–493.CrossRefGoogle ScholarPubMed
McNair, D.R., Lorr, M., & Droppleman, L.. POMS 1992: Profile of mood states. San Diego, CA: Educational and Testing Service.Google Scholar
McWhinney, I.R., Bass, M.J., & Donner, A. (1994). Evaluation of a palliative care service: Problems and pitfalls. British Medical Journal, 309, 1430–1344.Google Scholar
Melzack, R. (1975). The McGill Pain Questionnaire: Major properties and scoring methods. Pain, 1, 277–299.CrossRefGoogle ScholarPubMed
Mishel, M.H. (1984). Perceived uncertainty and stress and illness. Research in Nursing and Health, 7, 163–171.Google Scholar
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.Google Scholar
Moos, R.H., & Moos, B.S. (1981). Family environment scale manual. Palo Alto, CA: Consulting Psychologists Press.Google Scholar
Morrison, R.S. (2005). Palliative care outcomes research: The next steps. Journal of Palliative Medicine, 8, 13–16.Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.Google Scholar
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.Google Scholar
Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24, 653–655.Google ScholarPubMed
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.Google Scholar
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.CrossRefGoogle Scholar
Robinson, B.E., & Pham, H. (1996). Cost-effectiveness of hospice care. Clinics in Geriatric Medicine, 12(2), 417–428.Google Scholar
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.Google Scholar
Scholten, J.H.G., & van Weel, C. (1992). Functional status assessment in family practice. Lelystad: MediTekst.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
Smith, W.B. (2004). Research methodology: Implications for CAM pain research. Clinical Journal of Pain, 20, 3–7.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Wales, J., Kane, R., Robbins, S., Bernstein, L., & Krasnow, R. (1983). UCLA hospice evaluation study. Medical Care, 21, 734–744.Google Scholar
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.Google ScholarPubMed
Ware, J. (1976). Scales for measuring general health perceptions. Health Services Research, 11, 396–415.Google ScholarPubMed
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.Google Scholar
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.Google Scholar
Ware, J.E., & Sherbourne, C.D. (1992). The MOS 36-item short-form health survey. Medical Care, 30, 473–481.CrossRefGoogle ScholarPubMed
Weinberger, M., Smith, D.M., Katz, B.P., & Moore, P.S. (1988). The cost-effectiveness of intensive postdischarge care. Medical Care, 26, 1092–1102.Google Scholar
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.Google Scholar
Zigmond, A.S., & Snaith, R.P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370.Google Scholar
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.Google Scholar