Higginson IJ, Costantini M. Dying with cancer, living well with advanced cancer. Eur J Cancer. 2008;44:1414–24.
Gomes B, Higginson IJ. Where people die (1974—2030): past trends, future projections and implications for care. Palliat Med. 2008;22:33–41.
Quill TE, Abernethy AP. Generalist plus specialist palliative care – creating a more sustainable model. New Engl J Med. 2013;368:1173–5.
Frey R, Gott M, Raphael D, O’Callaghan A, Robinson J, Boyd M, et al. Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting. BMJ Support Palliat Care. 2014;4:381–9.
Gibbins J, McCoubrie R, Forbes K. Why are newly qualified doctors unprepared to care for patients at the end of life? Med Educ. 2011;45:389–99.
Antunes B, Harding R, Higginson IJ. Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2014;28:158–75.
Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Spile M, Sjogren P. Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manage. 2001;21:189–96.
Brunelli C, Costantini M, DiGiulio P, Gallucci M, Fusco F, Miccinesi G, et al. Quality-of-life evaluation: when do terminal cancer patients and health-care providers agree? J Pain Symptom Manage. 1998;15:151–8.
Petersen MA, Larsen H, Pedersen L, Groenvold M. Assessing health-related quality of life in palliative care: comparing patient and physician assessments. Eur J Cancer. 2006;42:1159–66.
Hladschik-Kermer B, Kierner KA, Heck U, Miksovsky A, Reiter B, Zoidl H, et al. Patients and staff perceptions of cancer patients’ quality of life. Eur J Oncol Nurs. 2013;17:70–4.
Janse A, Gemke R, Uiterwaal C, van der Tweel I, Kimpell JL, Sinnema G. Quality of life: patients and doctors don’t always agree: a meta-analysis. J Clin Epidemiol. 2004;57:653–61.
Moens K, Higginson IJ, Harding R. Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manage. 2014;48:660–77.
Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006;31:58–69.
Radbruch L, Nauck F, Ostgathe C, Elsner F, Bausewein C, Fuchs M, et al. What are the problems in palliative care? Results from a representative survey. Support Care Cancer. 2003;11:442–51.
Greenhalgh J. The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res. 2009;18:115–23.
Donabedian A. Explorations in quality assessment and monitoring. Ann Arbor: Health Administration Press; 1980.
Bausewein C, Simon ST, Benalia H, Downing J, Mwangi-Powell FN, Daveson BA, et al. Implementing patient reported outcome measures (PROMs) in palliative care – users’ cry for help. Health Qual Life Out. 2011;9:27.
Daveson B, Simon S, Benalia H, Downing J, Higginson IJ, Harding R, et al. Are we heading in the same direction? European and African doctors’ and nurses’ views and experiences regarding outcome measurement in palliative care. Palliat Med. 2012;26:242–9.
Simon ST, Higginson IJ, Harding R, Daveson BA, Gysels M, Deliens L, et al. Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care. Support Care Cancer. 2012;20:1573–8.
Bausewein C, Daveson BA, Benalia A, Simon ST, Higginson IJ. Outcome measurement in palliative care. The Essentials; 2011. PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-Life Care).
Bausewein C, Daveson BA, Currow DC, Downing J, Deliens L, Radbruch L, et al. EAPC White paper on Outcome Measurement in Palliative Care: improving practice, attaining outcomes and delivering quality services. Recommendations from the European Association for Palliative care (EAPC) Task Force on outcome measurement. Palliat Med June 11, 2015 [Published online before print].
International Society for Quality of Life Research; Aaronson NK, Choucair AK, Elliott TE, Greenhalgh J, Halyard MY, Hess R, et al. User’s guide to implementing patient-reported outcomes assessment in clinical practice, Version: November 11, 2011. http://www.isoqol.org/research/isoqol-publications. Accessed June 2013.
Valderas JM, Alonso J, Guyatt GH. Measuring patient-reported outcomes: moving from clinical trials into clinical practice. Med J Aust. 2008;189:93–4.
Greenhalgh J, Long AF, Flynn R. The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory? Soc Sci Med. 2005;60:833–43.
Cocks K, King MT, Velikova G, Fayers PM, Brown JM. Quality, interpretation and presentation of European Organisation for Research and Treatment of Cancer quality of life questionnaire core 30 data in randomised controlled trials. Eur J Cancer. 2008;44:1793–8.
Efficace F, Osoba D, Gotay C, Sprangers M, Coens C, Bottomley A. Has the quality of health-related quality of life reporting in cancer clinical trials improved over time? Towards bridging the gap with clinical decision making. Ann Oncol. 2007;18:775–81.
Espallargues M, Valderas JM, Alonso J. Provision of feedback on perceived health status to health care professionals: a systematic review of its impact. Med Care. 2000;38:175–86.
Greenhalgh J, Meadows K. The effectiveness of the use of patient‐based measures of health in routine practice in improving the process and outcomes of patient care: a literature review. J Eval Clin Pract. 1999;5:401–16.
Marshall S, Haywood K, Fitzpatrick R. Impact of patient‐reported outcome measures on routine practice: a structured review. J Eval Clin Pract. 2006;12:559–68.
Higginson IJ, Simon ST, Benalia H, Downing J, Daveson BA, Harding R, et al. Republished: which questions of two commonly used multidimensional palliative care patient reported outcome measures are most useful? Results from the European and African PRISMA survey. Postgrad Med J. 2012;88:451–7.
Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999;8:219–27.
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, et al. Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health Qual Life Outcomes. 2010;8:10.
Bausewein C, Fegg M, Radbruch L, Nauck F, von Mackensen S, Borasio GD, et al. Validation and clinical application of the German version of the palliative care outcome scale. J Pain Symptom Manage. 2005;30:51–62.
Bausewein C, Le Grice C, Simon S, Higginson I. PRISMA. The use of two common palliative outcome measures in clinical care and research: A systematic review of POS and STAS. Palliat Med. 2011;25:304–13.
Palliative care Outcome Scale. A resource for palliative care. www.pos-pal.org. Accessed on August 21, 2015.
Disler RT, Green A, Luckett T, Newton PJ, Inglis S, Currow DC, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage. 2014;48:1182–99.
Weingaertner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Bausewein C, et al. Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study. J Pain Symptom Manage. 2014;48:569–81. e1.
Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013;27:647–56.
Goodman CM. The Delphi technique: a critique. J Adv Nurs. 1987;12:729–34.
Dalkey NC, Brown BB, Cochran S. The Delphi method: An experimental study of group opinion. Santa Monica: Rand Corporation; 1969.
Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ. 2006;333:417.
Campbell SM, Cantrill JA, Roberts D. Prescribing indicators for UK general practice: Delphi consultation study. BMJ. 2000;321:425–8.
Fitch K, Bernstein SJ, Aguilar MD, Burnand B, LaCalle JR, Lazaro P, et al. The RAND/UCLA appropriateness method user’s manual. Santa Monica: RAND; 2001.
Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336:924–6.
Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34:81–93.
Andershed B. Relatives in end-of-life care--part 1: a systematic review of the literature the five last years, January 1999-February 2004. J Clin Nurs. 2006;15:1158–69.
Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011;6:CD007617.
Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004–2005. Crit Care Med. 2007;35:605–22.
Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012;15:696–702.
Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010;9:17.
Scheunemann LP, McDevitt M, Carson SS, Hanson LC. Randomized, controlled trials of interventions to improve communication in intensive care: a systematic review. Chest. 2011;139:543–54.
Candy B, Jones L, Varagunam M, Speck P, Tookman A, King M. Spiritual and religious interventions for well-being of adults in the terminal phase of disease. Cochrane Database Syst Rev. 2012;5:CD007544.
Hardy SE. Methylphenidate for the treatment of depressive symptoms, including fatigue and apathy, in medically ill older adults and terminally ill adults. Am J Geriatr Pharmacother. 2009;7:34–59.
Ly KL, Chidgey J, Addington-Hall J, Hotopf M. Depression in palliative care: a systematic review. Part 2. Treatment. Palliat Med. 2002;16:279–84.
Ostlund U, Brown H, Johnston B. Dignity conserving care at end-of-life: a narrative review. Eur J Oncol Nurs. 2012;16:353–67.
Rayner L, Price A, Evans A, Valsraj K, Hotopf M, Higginson IJ. Antidepressants for the treatment of depression in palliative care: systematic review and meta-analysis. Palliat Med. 2011;25:36–51.
Rayner L, Higginson I, Price A, Hotopf M. The management of depression in palliative care: European clinical guidelines. London: Department of Palliative Care, Policy & Rehabilitation, European Palliative Care Research Collaborative; 2010.
Ujeyl M, Muller-Oerlinghausen B. Antidepressants for treatment of depression in palliative patients: a systematic literature review. Schmerz. 2012;26:523–36.
Bausewein C, Booth S, Gysels M, Higginson I. Non-pharmacological interventions for breathlessness in advanced stages of malignant and non-malignant diseases. Cochrane Database Syst Rev. 2008;2:CD005623.
Gallagher R, Roberts D. A systematic review of oxygen and airflow effect on relief of dyspnea at rest in patients with advanced disease of any cause. J Pain Palliat Care Pharmacother. 2004;18:3–15.
Jennings AL, Davies AN, Higgins JPT, Anzures-Cabrera J, Broadley Karen E. Opioids for the palliation of breathlessness in advanced disease and terminal illness. Cochrane Database of Systematic Reviews 2012:CD002066.
Pan CX, Morrison RS, Ness J, Fugh-Berman A, Leipzig RM. Complementary and alternative medicine in the management of pain, dyspnea, and nausea and vomiting near the end of life. A systematic review. J Pain Symptom Manage. 2000;20:374–87.
Booth S, Wade R, Johnson M, Kite S, Swannick M, Anderson H. The use of oxygen in the palliation of breathlessness. A report of the expert working group of the Scientific Committee of the Association of Palliative Medicine. Respir Med. 2004;98:66–77.
Simon ST, Higginson IJ, Booth S, Harding R, Bausewein C. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev. 2010;1:CD007354.
Wiseman R, Rowett D, Allcroft P, Abernethy A, Currow D. Chronic refractory dyspnoea: Evidence based management. Aust Fam Physician. 2013;42:137–40.
Mahler DA, Selecky PA, Harrod CG, Benditt JO, Carrieri-Kohlman V, Curtis JR, et al. American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease. Chest. 2010;137:674–91.
Bradt J, Dileo C. Music therapy for end-of-life care. Cochrane Database Syst Rev 2010:CD007169.
Dy S, Wilson RF, Fawole OA, Lau BD, Martinez KA, Vollenweider D, et al. Improving health care and palliative care for advanced and serious illness: closing the quality gap - revisiting the state of the science. Rockville: Agency for Healthcare Research and Quality. Evidence Report/Technology Assessment; 2012.
El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol. 2011;9:87–94.
Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148:147–59.
Qaseem A, Snow V, Shekelle P, Casey Jr DE, Cross Jr JT, Owens DK, et al. Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians. Ann Intern Med. 2008;148:141–6.
Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013;6:CD007760.
Currow DC, Hegarty M. Residential aged-care facility palliative care guidelines: improving care. Int J Palliat Nurs. 2006;12:231–3.
Plonk Jr WM, Arnold RM. Terminal care: the last weeks of life. J Palliat Med. 2005;8:1042–54.
Rayner L, Price A, Hotopf M, Higginson IJ. The development of evidence-based European guidelines on the management of depression in palliative cancer care. Eur J Cancer. 2011;47:702–12.
Hudson P, Remedios C, Zordan R, Thomas K, Clifton K, Crewdson M, et al. Clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. Melbourne: Centre for Palliative Care, St. Vincent’s Hospital Melbourne; 2010.
Guidelines for a Palliative Approach in Residential Aged Care, Australian Government, national health and medical Research Council. 2006. Palliative Care Australia, Deakin West.
McCusker et al. Health care guideline: Palliative Care. Fourth Edition. Bloomington, MN: Institute for Clinical Systems Improvement; 2011.
Working group for the Clinical Practice Guidelines of Palliative Care. Clinical Practice Guideline for Palliative Care. Full version. No 2006/08. Madrid: National Plan for the NHS of the MSC. Health Technologies Assessment Agency of the Basque Country. Clinical practice guidelines in the Spanish NHS; 2008.
National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. 3rd ed. Pittsburgh: National Consensus Project for Quality Palliative Care; 2013.
Palliative Care Guidelines. Breaking bad news. Palliative care adult network guidelines http://book.pallcare.info/index.php?tid=109. Accessed on March 25, 2015.
Palliative Care Guidelines. Depression. Palliative care adult network guidelines http://book.pallcare.info/index.php?tid=49. Accessed on March 25, 2015.
Palliative Care Guidelines: Depression. Depression in Palliative Care. NHS Lothian. Re-issue date: August 2010. Review date: August 2013.
Palliative Care Guidelines. Dyspnoea. Palliative care adult network guidelines http://book.pallcare.info/index.php?tid=41. Accessed on March 25, 2015.
Palliative Care Guidelines. Breathlessness. Breathlessness in Palliative Care. NHS Lothian. Re-issue date: August 2010. Review date: August 2013.
Palliative Care Guidelines. Pocket Edition 2010. Third edition/Version 2. NHS Lothian. Re-issue date: August 2010. Review date: August 2013.
Periyakoil VJ. Panic disorder at the end-of-life. Fast Facts and Concepts. Milwaukee: End of Life/Palliative Education Resource Center, Medical College of Wisconson; 2005;145.
Downing J, Powell T, Bausewein C, Higginson IJ. Guidelines for using the palliative care outcome scale (POS). London: King’s College London; 2012.
Collaboration PCO. Three years of progress (2010 to 2013). Wollongong: Australian Health Services Research Institute, University of Wollongong; 2013.
Palliative Care Outcomes Collaboration. Helicopter Report: Trends in patient outcomes – January 2014. Wollongong: Australian Health Services Research Institute, University of Wollongong; 2014.
Duncan E, Murray J. The barriers and facilitators to routine outcome measurement by allied health professionals in practice: a systematic review. BMC Health Serv Res. 2012;12:96.
Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. J Clin Oncol. 2001;19:2049–56.
Bensing JM, Deveugele M, Moretti F, Fletcher I, van Vliet L, Van Bogaert M, et al. How to make the medical consultation more successful from a patient’s perspective? Tips for doctors and patients from lay people in the United Kingdom, Italy, Belgium and the Netherlands. Patient Edu Couns. 2011;84:287–93.
Thorne S, Hislop TG, Kim-Sing C, Oglov V, Oliffe JL, Stajduhar KI. Changing communication needs and preferences across the cancer care trajectory: insights from the patient perspective. Supportive care in cancer. Support Care Cancer. 2014;22:1009–15.
Pincock S. Poor communication lies at heart of NHS complaints, says ombudsman. BMJ. 2004;328:10.
Tamblyn R, Abrahamowicz M, Dauphinee D, Wenghofer E, Jacques A, Klass D, et al. Physician scores on a national clinical skills examination as predictors of complaints to medical regulatory authorities. JAMA. 2007;298:993–1001.
Morita T, Akechi T, Ikenaga M, Kizawa Y, Kohara H, Mukaiyama T, et al. Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol. 2004;15:1551–7.
Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med. 2014;2:979–87.
Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7:6–9.
Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207–19.
Osoba D, Zee B, Pater J, Warr D, Kaizer L, Latreille J. Psychometric properties and responsiveness of the EORTC quality of Life Questionnaire (QLQ-C30) in patients with breast, ovarian and lung cancer. Quality Life Res. 1994;3:353–64.
Borreani C, Bianchi E, Pietrolongo E, Rossi I, Cilia S, Giuntoli M, et al. Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention. PLoS One. 2014;9:e109679.
Ford E, Catt S, Chalmers A, Fallowfield L. Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro Oncol. 2012;14:392–404.
Etkind SN, Daveson BA, Kwok W, Witt J, Bausewein C, Higginson IJ, et al. Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review. J Pain Symptom Manage. 2015;49:611–24.
Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: results from a longitudinal study. Palliat Med. 2010;24:777–86.
Rayner L, Price A, Hotopf M, Higginson IJ. Expert opinion on detecting and treating depression in palliative care: A Delphi study. BMC Palliat Care. 2011;10:10.
Galbraith S, Fagan P, Perkins P, Lynch A, Booth S. Does the use of a handheld fan improve chronic dyspnea? A randomized, controlled, crossover trial. J Pain Symptom Manage. 2010;39:831–8.
Bausewein C, Booth S, Gysels M, Kuhnbach R, Higginson IJ. Effectiveness of a hand-held fan for breathlessness: a randomised phase II trial. BMC Palliat Care. 2010;9:22.
Higginson IJ, Evans CJ, Grande G, Preston N, Morgan M, McCrone P, et al. Evaluating complex interventions in end of life care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med. 2013;11:111.