Outcome measures for palliative care research

Current Opinion in Supportive and Palliative Care

Volumn 6, Issue 4, 2012, Pages 500-507

  Agar, Meera ^a,b,c   Luckett, Tim ^b  

^a FLINDERS UNIVERSITY   (Australia)

^b UNIVERSITY OF NEW SOUTH WALES   (Australia)

^c Braeside Hospital   (Australia)

Author keywords

Clinical trial; Outcome assessment; Palliative care

Indexed keywords

ANALGESIA; CLINICAL TRIAL (TOPIC); DEMENTIA; DYSPNEA; HUMAN; METHODOLOGY; OUTCOME ASSESSMENT; PALLIATIVE THERAPY; PATIENT PREFERENCE; QUALITY OF LIFE; REVIEW; SELF REPORT;

CLINICAL TRIALS AS TOPIC; DEMENTIA; DYSPNEA; HUMANS; OUTCOME ASSESSMENT (HEALTH CARE); PAIN MANAGEMENT; PALLIATIVE CARE; PATIENT PREFERENCE; QUALITY OF LIFE; RESEARCH DESIGN; SELF REPORT;

EID: 84871184150     PISSN: 17514258     EISSN: 17514266     Source Type: Journal    
DOI: 10.1097/SPC.0b013e32835a66ca     Document Type: Review

References (73)

1. American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, Last Acts Partnership, National Hospice and Palliative Care Organization. National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for quality palliative care, executive summary. J Palliat Med 2004; 7:611-627.
2. Harding R, List S, Epiphaniou E, et al. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med 2011; 26:7-22.
3. Gotay CC. Assessing cancer-related quality of life across a spectrum of applications. J Natl Cancer Inst Monogr 2004; 33:126-133.
4. Osoba D. A taxonomy of the uses of health-related quality-of-life instruments in cancer care and the clinical meaningfulness of the results. Med Care 2002; 40 (6 Suppl):III31-III38.
5. Luckett T, King M. Choosing patient-reported outcome measures for cancer clinical research: practical principles and an algorithm to assist nonspecialist researchers. Eur J Cancer 2010; 46:3149-3157.
6. Cherny N. Best supportive care: a euphemism for no care or a standard of good care? Semin Oncol 2011; 38:351-357.
7. Aktas A, Walsh D. Methodological challenges in supportive and palliative care cancer research. Semin Oncol 2011; 38:460-466.
8. Stiel S, Pastrana T, Balzer C, et al. Outcome assessment instruments in palliative and hospice care: a review of the literature. Support Care Cancer 2012. [Epub ahead of print]
9. Shelby-James T, Hardy J, Agar M, et al. Designing and conducting randomised controlled trials in palliative care: findings from the 2010 clinical research forum of the Australian Palliative Care Clinical Studies Collaborative (PaCCSC). Palliat Med 2011. doi: 10.1177/0269216311417036.
10. Hagen NA, Biondo PD, Brasher PMA, et al. Formal feasibility studies in palliative care: why they are important and how to conduct them. J Pain Symptom Manage 2011; 42:278-289.
11. Schwartz CE, Sprangers MA. Adaptationto Changing Health: Response Shift in Quality-of-Life Research. 1st ed. Washington: American Psychological Association; 2000.
12. Smith TA, Davidson PM, Lam LT, et al. The use of noninvasive ventilation for the relief of dyspnoea in exacerbations of chronic obstructive pulmonary disease; a systematic review. Respirology 2012; 17:300-307.
13. McMillan SC, Small BJ, Haley WE. Improving hospice outcomes through systematic assessment: a clinical trial. Cancer Nurs 2011; 34:89-97.
14. Currow DC, Agar MR, To THM, et al. Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates. J Palliat Med 2011; 14:309-314.
15. Kamal AH, Currow DC, Ritchie C, et al. The value of data collection within a palliative care program. Curr Oncol Rep 2011; 13:308-315.
16. 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.
17. Harding R, Simon ST, Benalia H, et al. 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 2011; 42:493-500.
18. Bruera E, Hui D. Standards for palliative care programs, interventions, and outcomes: not quite there yet. J Support Oncol 2011; 9:95-96.
19. Farquhar MC, Ewing G, Booth S. Using mixed methods to develop and evaluate complex interventions in palliative care research. Palliat Med 2011; 25:748-757.
20. Farquhar M, Prevost AT, McCrone P, et al. Phase III single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breath-lessness in advanced disease. Study protocol. Trials 2011; 12:130.
21. Sampson EL, Jones L, Thune-Boyle IC, et al. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med 2011; 25:197-209.
22. Weiss RE, Jia J, Suchard MA. A Bayesian model for the common effects of multiple predictors on mixed outcomes. Interface focus 2011; 1:886-894.
23. Yuan Y, Yin G. Bayesian hybrid dose-finding design in phase I oncology clinical trials. Stat Med 2011; 30:2098-2108.
24. Berry DA. Bayesian approaches for comparative effectiveness research. Clin 2012; 9:37-47.
25. Zafar SY, Currow D, Cherny N, et al. Consensus-based standards for best supportive care in clinical trials in advanced cancer. Lancet Oncol 2012; 13:e77-e82.
26. Currow D. The PRISMA Symposium 3: Lessons From Beyond Europe. Why Invest in Research and Service Development in Palliative Care? An Australian Perspective. J Pain Symptom Manage 2011; 42:505-510.
27. Abernethy AP, Currow DC. Patient self-reporting in palliative care using information technology: Yes, there is hope! Palliat Med 2011; 25:673-674.
28. Bausewein C, Simon ST, Benalia H, et al. Implementing patient reported outcome measures (PROMs) in palliative care-users' cry for help. Health Qual Life Outcomes 2011; 9:27.
29. Claassens L, van Meerbeeck J, Coens C, et al. Health-related quality of life (HRQOL) in nonsmall-cell lung cancer (NSCLC): an update of a systematic review on methodologic issues in randomized controlled trials. J Clin Oncol 2011; 29:2104-2120.
30. Shelby-James TM, Hardy J, Agar M, et al. Designing and conducting randomized controlled trials in palliative care: a summary of discussions from the 2010 clinical research forum of the Australian Palliative Care Clinical Studies Collaborative. Palliat Med 2011. [Epub ahead of print]
31. Currow DC, Abernethy AP, Bausewein C, et al. Measuring the net benefits of hospice and palliative care: a composite measure for multiple audiences-palliative net benefit. J Palliat Med 2011; 14:264e65.
32. Smith D, Caragian N, Kazlo E, et al. Can we make reports of end-of-life care quality more consumer-focused? Results of a nationwide quality measurement program. J Palliat Med 2011; 14:301-307.
33. Colagiuri B, King MT, Butow PN, et al. A comparison of the FACT-G and Supportive Care Needs Survey (SCNS) in women with ovarian cancer: Unidimensionality of constructs. Qual Life Res 2011; 21:887-897.
34. Bausewein C, Le Grice C, Simon S, et al. The use of two common palliative outcome measures in clinical care and research: a systematic review of POS and STAS. Palliat Med 2011; 25:304-313.
35. King MT. A point of minimal important difference (MID): a critique of terminology and methods. Expert Rev Pharmacoecon Outcomes Res 2011; 11:171-184.
36. Yost KJ, Eton DT, Garcia SF, et al. Minimally important differences were estimated for six patient-reported outcomes, measurement information system-cancer scales in advanced-stage cancer patients. J Clin Epidemiol 2011; 64:507-516.
37. Hamidou Z, Dabakuyo TS, Bonnetain F. Impact of response shift on long-itudinal quality-of-life assessment in cancer clinical trials. Expert Rev 2011; 11:549-559.
38. Schwartz CE, Sprangers MAG, Oort FJ, et al. Response shift in patients with multiple sclerosis: an application of three statistical techniques. Qual Life Res 2011; 20:1561-1572.
39. Li Y, Schwartz CE. Data mining for response shift patterns in multiple sclerosis patients using recursive partitioning tree analysis. Qual Life Res 2011; 20:1543-1553.
40. King-Kallimanis BL, Oort FJ, Nolte S, et al. Using structural equation modeling to detect response shift in performance and health-related quality of life scores of multiple sclerosis patients. Qual Life Res 2011; 20:1527-1540.
41. Ahmed S, Mayo N, Scott S, et al. Using latent trajectory analysis of residuals to detect response shift in general health among patients with multiple sclerosis. Qual Life Res 2011; 20:1555-1560.
42. Hjermstad MJ, Gibbins J, Haugen DF, et al. Pain assessment tools in palliative care: an urgent need for consensus. Palliat Med 2008; 22:895-903.
43. Hjermstad MJ, Fayers PM, Haugen DF, et al. Studies comparing Numerical Rating Scales, Verbal Rating Scales, and Visual Analogue Scales for assessment of pain intensity in adults: a systematic literature review. J Pain Symptom Manage 2011; 41:1073-1093.
44. Fallon M, Reale C, Davies A, Lux AE, et al. Efficacy and safety of fentanyl pectin nasal spray (FPNS) compared with immediate-release morphine sulfate tablets in the treatment of breakthrough cancer pain: a multicenter, randomized, controlled, double-blind, double-dummy multiple-crossover study. J Support Oncol 2011; 9:224-231.
45. Ahmedzai SH, Nauck F, Bar-Sela G, et al. A randomized, double-blind, active-controlled, double-dummy, parallel-group study to determine the safety and efficacy of oxycodone/naloxone prolonged-release tablets in patients with moderate/severe, chronic cancer pain. Palliat Med 2012; 26:50-60.
46. Mathias SD, Crosby RD, Qian Y, et al. Estimating minimally important differences for the worst pain rating of the brief pain inventory-short form. J Support Oncol 2011; 9:72-78.
47. Steel J, Geller DA, Tsung A, et al. Randomized controlled trial of a collaborative care intervention to manage cancer-related symptoms: lessons learned. Clin Trials 2011; 8:298-310.
48. Fink DJ, Wechuck J, Mata M, et al. Gene therapy for pain: results of a phase I clinical trial. Ann Neurol 2011; 70:207-212.
49. Berde CB, Walco GA, Krane EJ, et al. Pediatric analgesic clinical trial designs, measures, and extrapolation: report of an FDA scientific workshop. Pediatrics 2012; 129:354-364.
50. Chou PL, Lin CC. A pain education programme to improve patient satisfaction with cancer pain management: a randomised control trial. J Clin Nurs 2011; 20:1858-1869.
51. Kravitz RL, Tancredi DJ, Grennan T, et al. Cancer health empowerment for living without pain (Ca-HELP): effects of a tailored education and coaching intervention on pain and impairment. Pain 2011; 152:1572-1582.
52. Dorman S, Jolley C, Abernethy A, et al. Researching breathlessness in palliative care: consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup. Palliat Med 2009; 23:213-227.
53. Miki K, Maekura R, Hiraga T, et al. Effects of oxygen on exertional dyspnoea and exercise performance in patients with chronic obstructive pulmonary disease. Respirology 2012; 17:149-154.
54. Banzett RB, Adams L, O'Donnell CR, et al. Using laboratory models to test treatment: morphine reduces dyspnea and hypercapnic ventilatory response. Am J Respir Crit Care Med 2011; 184:920-927.
55. Casanova C, Celli BR, Barria P, et al. The 6-min walk distance in healthy subjects: reference standards from seven countries. Eur Respir J 2011; 37:150-156.
56. Currow DC, McDonald C, Oaten S, et al. Once-daily opioids for chronic dyspnea: a dose increment and pharmacovigilance study. J Pain Symptom Manage 2011; 42:388-399.
57. Oxberry SG, Torgerson DJ, Bland JM, et al. Short-term opioids for breath-lessness in stable chronic heart failure: a randomized controlled trial. Eur J Heart Fail 2011; 13:1006-1012.
58. Moore RP, Berlowitz DJ, Denehy L, et al. A randomised trial of domiciliary, ambulatory oxygen in patients with COPD and dyspnoea but without resting hypoxaemia. Thorax 2011; 66:32-37.
59. Norweg A, Ni P, Garshick E, et al. A multidimensional computer adaptive test approach to dyspnea assessment. Arch Phys Med Rehabil 2011; 92:1561-1569.
60. Gifford AH, Mahler DA, Waterman LA, et al. Neuromodulatory effect of endogenous opioids on the intensity and unpleasantness of breathlessness during resistive load breathing in COPD. COPD 2011; 8:160-166.
61. Gottlieb ER, Smith EC, Wolfenden LL, et al. Life-space mobility is associated with frequency of hospitalization in adults with cystic fibrosis. Clin Respir J 2011; 5:245-251.
62. Clark K, Currow DC. Assessing constipation in palliative care within a gastroenterology framework. Palliat Med 2012; 26:834-841.
63. Clark K, Currow DC. Plain abdominal radiographs to diagnose constipation patients with advanced progressive illness? J Pain Symptom Manage 2011; 41:e2-e3.
64. Selman L, Harding R, Gysels M, et al. The measurement of spirituality in palliative care and the content of tools validated cross-culturally: a systematic review. J Pain Symptom Manage 2011; 41:728-753.
65. Mitchell SL, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the next decade. Ann Intern Med 2012; 156 (1 Pt 1):45-51.
66. Kiely DK, Shaffer ML, Mitchell SL. Scales for the evaluation of end-of-life care in advanced dementia: sensitivity to change. Alzheimers Dis Assoc Disord 2012. [Epub ahead of print]
67. Parker D, Hodgkinson B. A comparison of palliative care outcome measures used to assess the quality of palliative care provided in long-term care facilities: a systematic review. Palliat Med 2010; 25:5-20.
68. Luckett T, King MT, Butow PN, et al. Choosing between the EORTC QLQ-C30 and FACT-G for measuring health-related quality of life in cancer clinical research: issues, evidence and recommendations. Ann Oncol 2011; 22:2179-2190.
69. Thoonsen B, Groot M, Engels Y, et al. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial. BMC Fam Pract 2011; 12:123.
70. Howell DM, Abernathy T, Cockerill R, et al. Predictors of home care expenditures and death at home for cancer patients in an integrated comprehensive palliative home care pilot program. Healthc Policy 2011; 6:e73-e92.
71. Luckett T, Davidson PM, Lam L, et al. Do Community specialist palliative care services that provide home nursing increase rates of home death for people with life-limiting illnesses? A Systematic Review and Meta-Analysis of Comparative Studies. J Pain Symptom Manage (in press).
72. Hardy J, Shelby-James T, Currow DC. Research in palliative care: is death always an adverse event? Intern Med J 2010; 40:89-90.
73. Currow D, Agar M, Abernethy A. Tackling the challenges of clinical trials in palliative care. Pharm Med 2011; 25:7-15.