Abstract
Background
Lung cancer remains a major disease burden in Victoria (Australia) and requires a complex and multidisciplinary approach to ensure optimal care and outcomes. To date, no uniform mechanism is available to capture standardized population-based outcomes and thereby provide benchmarking. The establishment of such a data platform is, therefore, a primary requisite to enable description of process and outcome in lung cancer care and to drive improvement in the quality of care provided to individuals with lung cancer.
Materials and Methods
A disease quality registry pilot has been established to capture prospective data on all adult patients with clinical or tissue diagnoses of small cell and non-small cell lung cancer. Steering and management committees provide clinical governance and supervise quality indicator selection. Quality indicators were selected following extensive literature review and evaluation of established clinical practice guidelines. A minimum dataset has been established and training and data capture by data collectors is facilitated using a web-based portal. Case ascertainment is established by regular institutional reporting of ICD-10 discharge coding. Recruitment is optimized by provision of opt-out consent.
Results
The collection of a standardized minimum data set optimizes capacity for harmonized population-based data capture. Data collection has commenced in a variety of settings reflecting metropolitan and rural, and public, and private health care institutions. The data set provides scope for the construction of a risk-adjusted model for outcomes. A data access policy and a mechanism for escalation policy for outcome outliers has been established.
Conclusions
The Victorian Lung Cancer Registry provides a unique capacity to provide and confirm quality assessment in lung cancer and to drive improvement in quality of care across multidisciplinary stakeholders.
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References
AIHW & Cancer Australia 201 Lung cancer in Australia: an overview. Cancer series no. 64. Cat. no. CAN 58. Canberra. 201 Cancer series no. 64. 1
Yu XQ, O’Connell DL, Gibberd RW, Smith DP, Dickman PW, Armstrong BK (2004) Estimating regional variation in cancer survival: a tool for improving cancer care. Cancer Causes Control 15:611–618
Vinod SK, Hui AC, Esmaili N, Hensley MJ, Barton MB (2004) Comparison of patterns of care in lung cancer in three area health services in New South Wales, Australia. Intern Med J 34:677–683
Yu XQ, O’Connell DL, Gibberd RW, Armstrong BK (2008) Assessing the impact of socio-economic status on cancer survival in New South Wales, Australia 1996–2001. Cancer Causes Control 19:1383–1390
Hall S, Holman CD, Sheiner H, Hendrie D (2004) The influence of socio-economic and locational disadvantage on survival after a diagnosis of lung or breast cancer in Western Australia. J Health Serv Res Policy 9(Suppl 2):10–16
Cunningham J, Rumbold AR, Zhang X, Condon JR (2008) Incidence, aetiology, and outcomes of cancer in indigenous peoples in Australia. Lancet Oncol 9:585–595
Condon JR, Cunningham J, Barnes T, Armstrong BK, Selva-Nayagam S (2006) Cancer diagnosis and treatment in the northern territory: assessing health service performance for indigenous Australians. Intern Med J 36:498–505
Copnell B, Hagger V, Wilson SG, Evans SM, Sprivulis PC, Cameron PA (2009) Measuring the quality of hospital care: an inventory of indicators. Intern Med J 39:352–360
McNeil JJ, Evans SM, Johnson NP, Cameron PA (2010) Clinical-quality registries: their role in quality improvement. Med J Aust 192:244–245
Evans SM, Scott IA, Johnson NP, Cameron PA, McNeil JJ (2011) Development of clinical-quality registries in Australia: the way forward. Med J Aust 194:360–363
Australian Commission on Safety and Quality in Health Care, NHMRC Centre for Research Excellence in Patient Safety, and National E-Health Transition Authority. Operating Principles and Technical Standards for Australian Clinical Quality Registries. http://www.crepatientsafety.org.au/registries/operating_principals_technical_standards_nov08.pdf, p 8
The Cancer Council Australia (2004) Clinical practice guidelines for the prevention, diagnosis and management of lung cancer. National Health and Medical Research Council, Canberra
(1997) Clinical practice guidelines for the treatment of unresectable non-small-cell lung cancer. Adopted on May 16, 1997 by the American Society of Clinical Oncology. J Clin Oncol 15:2996–3018
Non-small Cell Lung Cancer Collaborative Group (2000) Chemotherapy for non-small cell lung cancer. Cochrane Database Syst Rev 2:CD002139
ESMO (2001) ESMO Minimum Clinical Recommendations for diagnosis treatment and follow-up of non-small-cell lung cancer (NSCLC). Ann Oncol 12:1049–1050
French National Federation of Cancer Centers (FNCLCC) (2007) Standards, Options et Recommandations pour le traitement peri-operatoire des patients atteints d’un cancer bronchique non a petites cellules resecable d’emblee, operables (mise a jour) (Standards, Options and Recommendations (SOR) for the perioperative treatment of patients with resectable non-small cell lung cancer.). Rev Mal Respir 24:1049–1064
Azzoli CG, Baker S Jr, Temin S, Pao W, Aliff T, Brahmer J, Johnson DH, Laskin JL, Masters G, Milton D, Nordquist L, Pfister DG, Piantadosi S, Schiller JH, Smith R, Smith TJ, Strawn JR, Trent D, Giaccone G (2009) American Society of Clinical Oncology Clinical Practice Guideline update on chemotherapy for stage IV non-small-cell lung cancer. J Clin Oncol 27:6251–6266
Azzoli CG, Giaccone G, Temin S (2010) American Society of Clinical Oncology Clinical Practice Guideline update on chemotherapy for stage IV non-small-cell lung cancer. J Oncol Pract 6:39–43
Bolliger CT, Mathur PN, Beamis JF, Becker HD, Cavaliere S, Colt H, Diaz-Jimenez JP, Dumon JF, Edell E, Kovitz KL, Macha HN, Mehta AC, Marel M, Noppen M, Strausz J, Sutedja TG (2002) ERS/ATS statement on interventional pulmonology. European Respiratory Society/American Thoracic Society. Eur Respir J 19:356–373
Brunelli A, Charloux A, Bolliger CT, Rocco G, Sculier JP, Varela G, Licker M, Ferguson MK, Faivre-Finn C, Huber RM, Clini EM, Win T, De Ruysscher D, Goldman L (2009) ERS/ESTS clinical guidelines on fitness for radical therapy in lung cancer patients (surgery and chemo-radiotherapy). Eur Respir J 34:17–41
Brunelli A, Charloux A, Bolliger CT, Rocco G, Sculier JP, Varela G, Licker M, Ferguson MK, Faivre-Finn C, Huber RM, Clini EM, Win T, De Ruysscher D, Goldman L (2009) The European Respiratory Society and European Society of Thoracic Surgeons clinical guidelines for evaluating fitness for radical treatment (surgery and chemoradiotherapy) in patients with lung cancer. Eur J Cardiothorac Surg 36:181–184
Crino L, Weder W, van Meerbeeck J, Felip E (2010) Early stage and locally advanced (non-metastatic) non-small-cell lung cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol 21(Suppl 5):v103–v115
De Leyn P, Lardinois D, Van Schil PE, Rami-Porta R, Passlick B, Zielinski M, Waller DA, Lerut T, Weder W (2007) ESTS guidelines for preoperative lymph node staging for non-small cell lung cancer. Eur J Cardiothorac Surg 32:1–8
Devbhandari MP, Soon SY, Quennell P, Barber P, Krysiak P, Shah R, Jones MT (2007) UK waiting time targets in lung cancer treatment: are they achievable? Results of a prospective tracking study. J Cardiothorac Surg 2:5
Felip E, Stahel RA, Pavlidis N (2005) ESMO Minimum Clinical Recommendations for diagnosis, treatment and follow-up of non-small-cell lung cancer (NSCLC). Ann Oncol 16(Suppl 1):i28–i29
National Comprehensive Cancer Network (2012) Non small cell lung cancer NCCN guidelines version 3.2012
Pearson FG (1999) Non-small cell lung cancer: role of surgery for stages I–III. Chest 116:500S–503S
Pfister DG, Johnson DH, Azzoli CG, Sause W, Smith TJ, Baker S Jr, Olak J, Stover D, Strawn JR, Turrisi AT, Somerfield MR (2004) American Society of Clinical Oncology treatment of unresectable non-small-cell lung cancer guideline: update 2003. J Clin Oncol 22:330–353
Pisters KM, Evans WK, Azzoli CG, Kris MG, Smith CA, Desch CE, Somerfield MR, Brouwers MC, Darling G, Ellis PM, Gaspar LE, Pass HI, Spigel DR, Strawn JR, Ung YC, Shepherd FA (2007) Cancer Care Ontario and American Society of Clinical Oncology adjuvant chemotherapy and adjuvant radiation therapy for stages I–IIIA resectable non small-cell lung cancer guideline. J Clin Oncol 25:5506–5518
Scott WJ, Howington J, Feigenberg S, Movsas B, Pisters K (2007) Treatment of non-small cell lung cancer stage I and stage II: ACCP evidence-based clinical practice guidelines, 2nd edn. Chest 132:234S–242S
Shen KR, Meyers BF, Larner JM, Jones DR (2007) Special treatment issues in lung cancer: ACCP evidence-based clinical practice guidelines, 2nd edn. Chest 132:290S–305S
Somerfield MR, Einhaus K, Hagerty KL, Brouwers MC, Seidenfeld J, Lyman GH (2008) American Society of Clinical Oncology clinical practice guidelines: opportunities and challenges. J Clin Oncol 26:4022–4026
Campion FX, Larson LR, Kadlubek PJ, Earle CC, Neuss MN (2011) Advancing performance measurement in oncology: quality oncology practice initiative participation and quality outcomes. J Oncol Pract 7:31s–35s
Earle CC (2004) Outcomes research in lung cancer. J Natl Cancer Inst Monogr 33:56–77
Saito AM, Landrum MB, Neville BA, Ayanian JZ, Earle CC (2011) The effect on survival of continuing chemotherapy to near death. BMC Palliat Care 10:10–14
Kozower BD, Larner JM, Detterbeck FC, Jones DR (2013) Special treatment issues in non-small cell lung cancer: diagnosis and management of lung cancer, 3rd edn: American College of Chest Physicians evidence-based clinical practice guidelines. Chest 143:e369S–e399S
Ramnath N, Dilling TJ, Harris LJ, Kim AW, Michaud GC, Balekian AA, Diekemper R, Detterbeck FC, Arenberg DA (2013) Treatment of stage III non-small cell lung cancer: diagnosis and management of lung cancer, 3rd edn: American College of Chest Physicians evidence-based clinical practice guidelines. Chest 143:e314S–e340S
Silvestri GA, Gonzalez AV, Jantz MA, Margolis ML, Gould MK, Tanoue LT, Harris LJ, Detterbeck FC (2013) Methods for staging non-small cell lung cancer: diagnosis and management of lung cancer, 3rd edn: American College of Chest Physicians evidence-based clinical practice guidelines. Chest 143:e211S–e250S
Detterbeck FC, Postmus PE, Tanoue LT (2013) The stage classification of lung cancer: diagnosis and management of lung cancer, 3rd edn: American College of Chest Physicians evidence-based clinical practice guidelines. Chest 143:e191S–e210S
Travis WD, Brambilla E, Noguchi M, Nicholson AG, Geisinger KR, Yatabe Y, Beer DG, Powell CA, Riely GJ, Van Schil PE, Garg K, Austin JH, Asamura H, Rusch VW, Hirsch FR, Scagliotti G, Mitsudomi T, Huber RM, Ishikawa Y, Jett J, Sanchez-Cespedes M, Sculier JP, Takahashi T, Tsuboi M, Vansteenkiste J, Wistuba I, Yang PC, Aberle D, Brambilla C, Flieder D, Franklin W, Gazdar A, Gould M, Hasleton P, Henderson D, Johnson B, Johnson D, Kerr K, Kuriyama K, Lee JS, Miller VA, Petersen I, Roggli V, Rosell R, Saijo N, Thunnissen E, Tsao M, Yankelewitz D (2011) International association for the study of lung cancer/american thoracic society/european respiratory society international multidisciplinary classification of lung adenocarcinoma. J Thorac Oncol 6:244–285
Tanvetyanon T (2009) Quality-of-care indicators for non-small cell lung cancer. Cancer Control 16:335–341
Tanvetyanon T, Corman M, Lee JH, Fulp WJ, Schreiber F, Brown RH, Levine RM, Cartwright TH, Abesada-Terk G, Kim GP, Alemany C, Faig D, Sharp PV, Markham MJ, Bepler G, Siegel E, Shibata D, Malafa M, Jacobsen PB (2011) Quality of care in non-small-cell lung cancer: findings from 11 oncology practices in Florida. J Oncol Pract 7:e25–e31
Souquet PJ, Chauvin F, Boissel JP, Bernard JP (1995) Meta-analysis of randomised trials of systemic chemotherapy versus supportive treatment in non-resectable non-small cell lung cancer. Lung Cancer 12(Suppl 1):S147–S154
Rozans M, Dreisbach A, Lertora JJ, Kahn MJ (2002) Palliative uses of methylphenidate in patients with cancer: a review. J Clin Oncol 20:335–339
Rizzo JD, Lichtin AE, Woolf SH, Seidenfeld J, Bennett CL, Cella D, Djulbegovic B, Goode MJ, Jakubowski AA, Lee SJ, Miller CB, Rarick MU, Regan DH, Browman GP, Gordon MS (2002) Use of epoetin in patients with cancer: evidence-based clinical practice guidelines of the American Society of Clinical Oncology and the American Society of Hematology. J Clin Oncol 20:4083–4107
Potosky AL, Saxman S, Wallace RB, Lynch CF (2004) Population variations in the initial treatment of non-small-cell lung cancer. J Clin Oncol 22:3261–3268
Pignon JP, Tribodet H, Scagliotti GV, Douillard JY, Shepherd FA, Stephens RJ, Dunant A, Torri V, Rosell R, Seymour L, Spiro SG, Rolland E, Fossati R, Aubert D, Ding K, Waller D, Le Chevalier T (2008) Lung adjuvant cisplatin evaluation: a pooled analysis by the LACE Collaborative Group. J Clin Oncol 26:3552–3559
Oxnard GR, Fidias P, Muzikansky A, Sequist LV (2007) Non-small cell lung cancer in octogenarians: treatment practices and preferences. J Thorac Oncol 2:1029–1035
Ouwens MM, Hermens RR, Termeer RA, Vonk-Okhuijsen SY, Tjan-Heijnen VC, Verhagen AF, Hulscher MM, Marres HA, Wollersheim HC, Grol RP (2007) Quality of integrated care for patients with nonsmall cell lung cancer: variations and determinants of care. Cancer 110:1782–1790
Ouwens M, Hermens R, Hulscher M, Vonk-Okhuijsen S, Tjan-Heijnen V, Termeer R, Marres H, Wollersheim H, Grol R (2009) Development of indicators for patient-centred cancer care. Support Care Cancer 18(1):121–130
Osterborg A, Brandberg Y, Molostova V, Iosava G, Abdulkadyrov K, Hedenus M, Messinger D (2002) Randomized, double-blind, placebo-controlled trial of recombinant human erythropoietin, epoetin Beta, in hematologic malignancies. J Clin Oncol 20:2486–2494
Mandelblatt JS, Ganz PA, Kahn KL (1999) Proposed agenda for the measurement of quality-of-care outcomes in oncology practice. J Clin Oncol 17:2614–2622
Mainz J, Hjulsager M, Og MT, Burgaard J (2009) National benchmarking between the Nordic countries on the quality of care. J Surg Oncol 99:505–507
Littlewood TJ, Bajetta E, Nortier JW, Vercammen E, Rapoport B (2001) Effects of epoetin alfa on hematologic parameters and quality of life in cancer patients receiving nonplatinum chemotherapy: results of a randomized, double-blind, placebo-controlled trial. J Clin Oncol 19:2865–2874
Hermens RP, Ouwens MM, Vonk-Okhuijsen SY, van der Wel Y, Tjan-Heijnen VC, van den Broek LD, Ho VK, Janssen-Heijnen ML, Groen HJ, Grol RP, Wollersheim HC (2006) Development of quality indicators for diagnosis and treatment of patients with non-small cell lung cancer: a first step toward implementing a multidisciplinary, evidence-based guideline. Lung Cancer 54:117–124
Given B, Given CW, McCorkle R, Kozachik S, Cimprich B, Rahbar MH, Wojcik C (2002) Pain and fatigue management: results of a nursing randomized clinical trial. Oncol Nurs Forum 29:949–956
Farjah F, Flum DR, Varghese TK Jr, Symons RG, Wood DE (2009) Surgeon specialty and long-term survival after pulmonary resection for lung cancer. Ann Thorac Surg 87:995–1004
Demetri GD, Kris M, Wade J, Degos L, Cella D (1998) Quality-of-life benefit in chemotherapy patients treated with epoetin alfa is independent of disease response or tumor type: results from a prospective community oncology study. Procrit Study Group. J Clin Oncol 16:3412–3425
Chien CR, Lai MS (2006) Trends in the pattern of care for lung cancer and their correlation with new clinical evidence: experiences in a university-affiliated medical center. Am J Med Qual 21:408–414
Chien CR, Tsai CM, Tang ST, Chung KP, Chiu CH, Lai MS (2008) Quality of care for lung cancer in Taiwan: a pattern of care based on core measures in the Taiwan Cancer Database registry. J Formos Med Assoc 107:635–643
Cheung MC, Hamilton K, Sherman R, Byrne MM, Nguyen DM, Franceschi D, Koniaris LG (2009) Impact of teaching facility status and high-volume centers on outcomes for lung cancer resection: an examination of 13,469 surgical patients. Ann Surg Oncol 16:3–13
Cassivi SD, Allen MS, Vanderwaerdt GD, Ewoldt LL, Cordes ME, Wigle DA, Nichols FC, Pairolero PC, Deschamps C (2008) Patient-centered quality indicators for pulmonary resection. Ann Thorac Surg 86:927–932
Blayney DW, McNiff K, Hanauer D, Miela G, Markstrom D, Neuss M (2009) Implementation of the quality oncology practice initiative at a university comprehensive cancer center. J Clin Oncol 27:3802–3807
Birkmeyer NJ, Goodney PP, Stukel TA, Hillner BE, Birkmeyer JD (2005) Do cancer centers designated by the National Cancer Institute have better surgical outcomes? Cancer 103:435–441
Barlesi F, Boyer L, Doddoli C, Antoniotti S, Thomas P, Auquier P (2005) The place of patient satisfaction in quality assessment of lung cancer thoracic surgery. Chest 128:3475–3481
Akechi T, Okamura H, Nishiwaki Y, Uchitomi Y (2001) Psychiatric disorders and associated and predictive factors in patients with unresectable nonsmall cell lung carcinoma: a longitudinal study. Cancer 92:2609–2622
Akechi T, Ietsugu T, Sukigara M, Okamura H, Nakano T, Akizuki N, Okamura M, Shimizu K, Okuyama T, Furukawa TA, Uchitomi Y (2009) Symptom indicator of severity of depression in cancer patients: a comparison of the DSM-IV criteria with alternative diagnostic criteria. Gen Hosp Psychiatry 31:225–232
Ahlberg K, Ekman T, Gaston-Johansson F, Mock V (2003) Assessment and management of cancer-related fatigue in adults. Lancet 362:640–650
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742
Pahlman L, Bohe M, Cedermark B, Dahlberg M, Lindmark G, Sjodahl R, Ojerskog B, Damber L, Johansson R (2007) The Swedish rectal cancer registry. Br J Surg 94:1285–1292
Campion FX, Larson LR, Kadlubek PJ, Earle CC, Neuss MN (2011) Advancing performance measurement in oncology. Am J Manag Care 17(Suppl 5 Developing):SP32–SP36
Penninckx F, Van Eycken L, Michiels G, Mertens R, Bertrand C, De Coninck D, Haustermans K, Jouret A, Kartheuser A, Tinton N (2006) Survival of rectal cancer patients in Belgium 1997–1998 and the potential benefit of a national project. Acta Chir Belg 106:149–157
Ashley L, Jones H, Forman D, Newsham A, Brown J, Downing A, Velikova G, Wright P (2011) Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic patient-reported outcomes from cancer survivors (ePOCS) system. BMC Med Inform Decis Mak 11:66
Porter G, Urquhart R, Bu J, Kendell C, Macintyre M, Dewar R, Kephart G, Asada Y, Grunfeld E (2012) A team approach to improving colorectal cancer services using administrative health data. Health Res Policy Syst 10:4
Engel J, Ludwig MS, Schubert-Fritschle G, Tretter W, Holzel D (2001) Cancer prevention and the contribution of cancer registries. J Cancer Res Clin Oncol 127:331–339
Conron M, Phuah S, Steinfort D, Dabscheck E, Wright G, Hart D (2007) Analysis of multidisciplinary lung cancer practice. Intern Med J 37:18–25
Donabedian A (1988) The quality of care. How can it be assessed? JAMA 260:1743–1748
Albert JM, Das P (2012) Quality assessment in oncology. Int J Radiat Oncol Biol Phys 83:773–781
Jakobsen E, Palshof T, Osterlind K, Pilegaard H (2009) Data from a national lung cancer registry contributes to improve outcome and quality of surgery: Danish results. Eur J Cardiothorac Surg 35:348–352
German RR, Wike JM, Bauer KR, Fleming ST, Trentham-Dietz A, Namiak M, Almon L, Knight K, Perkins C (2011) Quality of cancer registry data: findings from CDC-NPCR’s breast and prostate cancer data quality and patterns of care study. J Registry Manag 38:75–86
Mroczkowski P, Ortiz H, Penninckx F, Pahlman L (2011) European quality assurance programme in rectal cancer: are we ready to launch? Colorectal Dis 10–1318
Beatty JD, Adachi M, Bonham C, Atwood M, Potts MS, Hafterson JL, Aye RW (2011) Utilization of cancer registry data for monitoring quality of care. J Surg 201:645–649
Stevens W, Stevens G, Kolbe J, Cox B (2008) Comparison of New Zealand Cancer Registry data with an independent lung cancer audit. N Z Med J 121:29–41
Said SM, Hahn J, Koops S, Puschel K (2007) How reliable are our cancer statistics? Cancer cases in Hamburg’s autopsy material. Dtsch Med Wochenschr 132:2067–2070
Wouters MW, Siesling S, Jansen-Landheer ML, Elferink MA, Belderbos J, Coebergh JW, Schramel FM (2010) Variation in treatment and outcome in patients with non-small cell lung cancer by region, hospital type and volume in the Netherlands. Eur J Surg Oncol 36(Suppl 1):S83–S92
Brenner H, Hakulinen T (2005) Population-based monitoring of cancer patient survival in situations with imperfect completeness of cancer registration. Br J Cancer 92:576–579
Acknowledgments
This paper written on behalf of the Victorian Lung Cancer Steering and Management committees. Funding for the Victorian Lung Cancer Registry has been provided through a Grant from the Victorian Cancer Agency 2010.
Conflict of interest
The authors have no conflict of interests to declare.
Ethics
The Victorian Lung Cancer Registry Pilot has been approved by the ethics committee of the Alfred Hospital Research and Ethics Unit (Project 1589/11).
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Stirling, R.G., Evans, S.M., McLaughlin, P. et al. The Victorian Lung Cancer Registry Pilot: Improving the Quality of Lung Cancer Care Through the Use of a Disease Quality Registry. Lung 192, 749–758 (2014). https://doi.org/10.1007/s00408-014-9603-8
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DOI: https://doi.org/10.1007/s00408-014-9603-8