Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care

Supportive Care in Cancer

Volumn 20, Issue 7, 2012, Pages 1573-1578

  Simon, Steffen T ^a,b   Higginson, Irene J ^a   Harding, Richard ^a   Daveson, Barbara A ^a   Gysels, Marjolein ^c   Deliens, Luc ^d,e   Echteld, Michael A ^e   Radbruch, Lukas ^f   Toscani, Franco ^g   Krzyzanowski, Dominik M ^h   Costantini, Massimo ⁱ   Downing, Julia ^j   Ferreira, Pedro L ^k   Benalia, Abdelhamid ^a   Bausewein, Claudia ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b UNIVERSITY OF COLOGNE   (Germany)

^c Fundacio Clinic Per a la Recerca Biomedica   (Spain)

^d VRIJE UNIVERSITEIT BRUSSEL   (Belgium)

^e VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^f UNIVERSITY OF BONN   (Germany)

^g Istituto di Ricerca in Medicina Palliativa   (Italy)

^h WROCLAW MEDICAL UNIVERSITY   (Poland)

ⁱ UNIVERSITY OF GENOA   (Italy)

^j AFRICAN PALLIATIVE CARE ASSOCIATION   (Uganda)

^k UNIVERSITY OF COIMBRA   (Portugal)

more..

Author keywords

Cancer; End of life care; Europe; Outcome measurement; Palliative care; PROM; Research

Indexed keywords

AFRICA; ARTICLE; CLINICAL PRACTICE; CLINICAL RESEARCH; CULTURAL ANTHROPOLOGY; CULTURAL SENSITIVITY; EUROPE; HEALTH CARE QUALITY; INTERNATIONAL COOPERATION; NORTH AMERICA; NURSING COMPETENCE; OUTCOME ASSESSMENT; PALLIATIVE THERAPY; PRACTICE GUIDELINE; PRIORITY JOURNAL; STANDARDIZATION; TERMINAL CARE;

BIOMEDICAL RESEARCH; COOPERATIVE BEHAVIOR; EUROPE; HUMANS; INTERNATIONAL COOPERATION; OUTCOME ASSESSMENT (HEALTH CARE); PALLIATIVE CARE; QUALITY ASSURANCE, HEALTH CARE; TERMINAL CARE;

EID: 84863987576     PISSN: 09414355     EISSN: 14337339     Source Type: Journal    
DOI: 10.1007/s00520-012-1436-5     Document Type: Article

References (20)

1. Mularski RA, Dy SM, Shugarman LR, Wilkinson AM, Lynn J, Shekelle PG, Morton SC, Sun VC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Lorenz KA (2007) A systematic review of measures of end-of-life care and its outcomes. Health ServRes 42 (5): 1848-1870
2. Wasteson E, Brenne E, Higginson IJ, Hotopf M, Lloyd-Williams M, Kaasa S, Loge JH (2009) Depression assessment and classification in palliative cancer patients: a systematic literature review. Palliat Med 23 (8): 739-753
3. Dunckley M, Aspinal F, Addington-Hall JM, Hughes R, Higginson IJ (2005) A research study to identify facilitators and barriers to outcome measure implementation. Int J Palliat Nurs 11 (5): 218-225
4. Hearn J, Higginson IJ (1997) Outcome measures in palliative care for advanced cancer patients: a review. JPublic Health Med 19 (2): 193-199
5. Bottomley A, Aaronson NK (2007) International perspective on health-related quality-of-life research in cancer clinical trials: the European Organisation for Research and Treatment of Cancer experience. J Clin Oncol 25 (32): 5082-5086
6. Harding R, Higginson IJ, On behalf of PRISMA (2010) PRISMA: A pan-European co-ordinating action to advance the science in end-of-life cancer care. Eur J Cancer 46 (9): 1493-501
7. Sigurdardottir KR, Haugen DF, Rijt CC, Sjøgren P, Harding R, Higginson IJ, Kaasa S, on behalf of project PRISMA (2010) Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop. Eur J Cancer 46 (10): 1815-22
8. Ritchie J, Lewis J (2004) Qualitative research practice. Sage Publications, London
9. Bausewein C, Simon ST, Benalia H, Downing J, Mwangi-Powell FN, Daveson BA, Harding R, Higginson IJ (2011) Implementing patient reported outcome measures (PROMs) in palliative care-users' cry for help. Health Qual Life Outcomes 9: 27. doi: 10.1186/1477-7525-9-27
10. Pastrana T, Radbruch L, Nauck F, Hover G, Fegg M, Pestinger M, Ross J, Krumm N, Ostgathe C (2010) Outcome indicators in palliative care-how to assess quality and success. Focus group and nominal group technique in Germany. Support Care Cancer 18 (7): 859-868
11. Powell RA, Downing J, Harding R, Mwangi-Powell F, Connor S (2007) Development of the APCA African Palliative Outcome Scale. J Pain Symptom Manage 33 (2): 229-232
12. Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, MmolediK, Moll T, Sebuyira LM, Panjatovic B, Higginson IJ (2010) Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health Qual Life Outcomes 8: 10. doi: 10.1186/1477-7525-8-10
13. Murtagh FE, Addington-Hall JM, Higginson IJ (2007) The value of cognitive interviewing techniques in palliative care research. Palliat Med 21 (2): 87-93
14. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ (2004) Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 22 (4): 714-724
15. Harding R, Simon ST, Benalia H, Downing J, Daveson BA, Higginson IJ, Bausewein C (2011) The PRISMA Symposium 1: outcome tool use. Disharmony in European outcomes research for palliative and advanced disease care: too many tools in practice. J Pain Symptom Manage 42 (4): 493-500
16. Bainbridge D, Seow H, Sussman J, Pond G, Martelli-Reid L, Herbert C, Evans W (2011) Multidisciplinary health care professionals' perceptions of the use and utility of a symptom assessment system for oncology patients. Journal of Oncology Practice 7 (1): 19-23
17. Daveson BA, Harding R, Derycke N, Vanden Berghe P, Edwards S, Higginson IJ (2011) The PRISMA Symposium 4: how should Europe progress end-of-life and palliative clinical care research? Recommendations from the proceedings. J Pain Symptom Manage 42 (4): 511-516
18. Lipscomb J, Reeve BB, Clauser SB, Abrams JS, Bruner DW, Burke LB, Denicoff AM, Ganz PA, Gondek K, Minasian LM, O'Mara AM, Revicki DA, Rock EP, Rowland JH, Sgambati M, Trimble EL (2007) Patient-reported outcomes assessment in cancer trials: taking stock, moving forward. J Clin Oncol 25 (32): 5133-5140
19. Daveson BA, Simon ST, Benalia H, Downing J, Higginson IJ, Harding R, Bausewein C (2011) Are we heading in the same direction? European and African doctors' and nurses' views and experiences regarding outcome measurement in palliative care. Palliat Med Jun 22. doi: 10.1177/0269216311409614 [Epub ahead of print]
20. Smith AB, Rush R, Velikova G, Wall L, Wright EP, Stark D, Selby P, Sharpe M (2007) The initial development of an item bank to assess and screen for psychological distress in cancer patients. Psychooncology 16 (8): 724-32