Patient delay in cancer diagnosis: what do we really mean and can we be more specific?

BMC Health Services Research

Greg Paul Rubin¹  Andrew James Russell²  Christina Mary Dobson¹ 

[1]School of Medicine, Pharmacy & Health, Durham University, Durham, UK

[2]Department of Anthropology, Durham University, Durham, UK

关键词: Symptom appraisal;    Help-seeking;    Early diagnosis;    Cancer;    Delay;   

Others  :  1126494
DOI  :  10.1186/1472-6963-14-387

 received in 2014-05-16, accepted in 2014-09-08,  发布年份 2014

【 摘 要 】

Background

Early diagnosis is a key focus of cancer control because of its association with survival. Delays in diagnosis can occur throughout the diagnostic pathway, within any one of its three component intervals: the patient interval, the primary care interval and the secondary care interval.

Discussion

A key focus for help-seeking research in patients with symptoms of cancer has been the concept of ‘delay’. The literature is plagued by definitional and semantic problems, which serve to hinder comparison between studies. Use of the word ‘delay’ has been criticised as judgemental and potentially stigmatising, because of its implications of intent. However, the suggested alternatives (time to presentation, appraisal interval, help-seeking interval and postponement of help-seeking) still fail to accurately define the concept in hand, and often conflate three quite separate ideas; that of an interval, that of an unacceptably long interval, and that of a specific event which caused delay in the diagnostic process. We discuss the need to disentangle current terminology and suggest the term ‘prolonged interval’ as a more appropriate alternative. Most studies treat the patient interval as a dichotomous variable, with cases beyond a specified time point classified as ‘delay’. However, there are inconsistencies in both where this line is drawn, ranging from one week to three months, and how, with some studies imposing seemingly arbitrary time points, others utilising the median as a divisive tool or exploring quartiles within their data. This not only makes comparison problematic, but, as many studies do not differentiate between cancer site, also imposes boundaries which are not necessarily site-relevant. We argue that analysis of the patient interval should be based on presenting symptom, as opposed to pathology, to better reflect the context of the help-seeking interval, and suggest how new definitional boundaries could be developed.

Summary

The word ‘delay’ is currently (conf)used to describe diverse conceptualisations of ‘delay’ and more mindful, and discerning language needs to be developed to enable a more sophisticated discussion. By stratifying help-seeking by presenting symptom(s), more accurate and informative analyses could be produced which, in turn, would result in more accurately targeted early diagnosis interventions.

【 授权许可】

   
2014 Dobson et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Richards MA, Westcombe AM, Love SB, Littlejohns P, Ramirez AJ: Influence of delay on survival in patients with breast cancer: a systematic review. Lancet 1999, 353:1119-1126.
• [2]Tørring ML, Frydenberg M, Hansen RP, Olesen F, Hamilton W, Vedsted P: Time to diagnosis and mortality in colorectal cancer: a cohort study in primary care. Br J Cancer 2011, 104:934-940.
• [3]Tørring ML, Frydenberg M, Hamilton W, Hansen RP, Lautrup MD, Vedsted P: Diagnostic interval and mortality in colorectal cancer: U-shaped association demonstrated for three different datasets. J Clin Epidemiol 2012, 65:669-678.
• [4]Tørring ML, Frydenberg M, Hansen RP, Olesen F, Vedsted P: Evidence of increasing mortality with longer diagnostic intervals for five common cancers: a cohort study in primary care. Eur J Cancer 2013, 49:2187-2198.
• [5]Andersen B, Cacioppo J, Roberts D: Delay in seeking a cancer diagnosis: Delay stages and psychophysiological comparison processes. Br J Soc Psychol 1995, 34:33-52.
• [6]Olesen F, Hansen RP, Vedsted P: Delay in diagnosis: the experience in Denmark. Br J Cancer 2009, 101:5-8.
• [7]Walter F, Webster A, Scott S, Emery J: The Andersen Model of Total Patient Delay: a systematic review of its application in cancer diagnosis. J Health Serv Res Policy 2012, 17:110-118.
• [8]Ramirez AJ, Westcombe AM, Burgess CC, Sutton S, Littlejohns P, Richards MA: Factors predicting delayed presentation of symptomatic breast cancer: a systematic review. Lancet 1999, 353:1127-1131.
• [9]Macleod U, Mitchell ED, Burgess C, Macdonald S, Ramirez AJ: Risk factors for delayed presentation and referral of symptomatic cancer: evidence for common cancers. Br J Cancer 2009, 101(Suppl):S92-S101.
• [10]Mitchell E, Macdonald S, Campbell NC, Weller D, Macleod U: Influences on pre-hospital delay in the diagnosis of colorectal cancer: a systematic review. Br J Cancer 2008, 98:60-70.
• [11]Waller J, Robb K, Stubbings S, Ramirez A, Macleod U, Austoker J, Hiom S, Wardle J: Awareness of cancer symptoms and anticipated help seeking among ethnic minority groups in England. Br J Cancer 2009, 101(Suppl):S24-S30.
• [12]Forbes LJL, Atkins L, Thurnham A, Layburn J, Haste F, Ramirez AJ: Breast cancer awareness and barriers to symptomatic presentation among women from different ethnic groups in East London. Br J Cancer 2011, 105:1474-1479.
• [13]Meechan G, Collins J, Petrie KJ: The relationship of symptoms and psychological factors to delay in seeking medical care for breast symptoms. Prev Med (Baltim) 2003, 36:374-378.
• [14]Smith SM, Campbell NC, MacLeod U, Lee AJ, Raja A, Wyke S, Ziebland SB, Duff EM, Ritchie LD, Nicolson MC: Factors contributing to the time taken to consult with symptoms of lung cancer: a cross-sectional study. Thorax 2009, 64:523-531.
• [15]Facione NC: Delay versus help seeking for breast cancer symptoms: a critical review of the literature on patient and provider delay. Soc Sci Med 1993, 36:1521-1534.
• [16]Dent OF, Goulston KJ, Tennant CC, Langeluddecke P, Mant A, Chapuis PH, Ward M, Bokeyt L: Patient delay in presentation. Dis Colon Rectum 1990, 33:851-857.
• [17]Cockburn J, Paul C, Tzelepis F, McElduff P, Byles J: Delay in seeking advice for symptoms that potentially indicate bowel cancer. Am J Heal Behav 2003, 27:401-407.
• [18]Brouha XDR, Tromp DM, de Leeuw JRJ, Hordijk G-J, Winnubst JAM: Laryngeal cancer patients: analysis of patient delay at different tumor stages. Head Neck 2005, 27:289-295.
• [19]Scott SE, McGurk M, Grunfeld EA: The process of symptom appraisal: cognitive and emotional responses to detecting potentially malignant oral symptoms. J Psychosom Res 2007, 62:621-630.
• [20]Gascoigne P, Mason MD, Roberts E: Factors affecting presentation and delay in patients with testicular cancer: results of a qualitative study. Psychooncology 1999, 8:144-154.
• [21]Molassiotis A, Wilson B, Brunton L, Chandler C: Mapping patients’ experiences from initial change in health to cancer diagnosis: a qualitative exploration of patient and system factors mediating this process. Eur J Cancer Care (Engl) 2010, 19:98-109.
• [22]Andersen RS, Paarup B, Vedsted P, Bro F, Soendergaard J: “Containment” as an analytical framework for understanding patient delay: a qualitative study of cancer patients’ symptom interpretation processes. Soc Sci Med 2010, 71:378-385.
• [23]Corner J, Hopkinson J, Roffe L: Experience of health changes and reasons for delay in seeking care: a UK study of the months prior to the diagnosis of lung cancer. Soc Sci Med 2006, 62:1381-1391.
• [24]Howell DA, Smith AG, Roman E: Help-seeking behaviour in patients with lymphoma. Eur J Cancer Care (Engl) 2008, 17:394-403.
• [25]Granek L, Fergus K: Resistance, agency, and liminality in women’s accounts of symptom appraisal and help-seeking upon discovery of a breast irregularity. Soc Sci Med 2012, 75:1753-1761.
• [26]De Nooijer J, Lechner L, de Vries H: A qualitative study on detecting cancer symptoms and seeking medical help; an application of Andersen’s model of total patient delay. Patient Educ Couns 2001, 42:145-157.
• [27]Scott SE, Grunfeld EA, Auyeung V, McGurk M: Barriers and triggers to seeking help for potentially malignant oral symptoms: implications for interventions. J Public Health Dent 2009, 69:34-40.
• [28]Dubayova T, van Dijk JP, Nagyova I, Rosenberger J, Havlikova E, Gdovinova Z, Middel B, Groothoff JW: The impact of the intensity of fear on patient’s delay regarding health care seeking behavior: a systematic review. Int J Public Health 2010, 55:459-468.
• [29]Pedersen AF, Olese F, Hansen RP, Zachariae R, Vedsted P: Coping strategies and patient delay in patients with cancer. J Psychosoc Oncol 2013, 31:204-218.
• [30]Chapple A, Ziebland S, McPherson A: Qualitative study of men’s perceptions of why treatment delays occur in the UK for those with testicular cancer. Br J Gen Pract 2004, 54:25-32.
• [31]Smith LK, Pope C, Botha JL: Patients’ help-seeking experiences and delay in cancer presentation: a qualitative synthesis. Lancet 2005, 366:825-831.
• [32]Andersen RS, Vedsted P, Olesen F, Bro F, Søndergaard J: Does the organizational structure of health care systems influence care-seeking decisions? A qualitative analysis of Danish cancer patients’ reflections on care-seeking. Scand J Prim Health Care 2011, 29:144-149.
• [33]Burgess C, Hunter MS, Ramirez AJ: A qualitative study of delay among women reporting symptoms of breast cancer. Br J Gen Pract 2001, 51:967-971.
• [34]Gould J, Fitzgerald B, Fergus K, Clemons M, Baig F: Why women delay seeking assistance for locally advanced breast cancer. Can Oncol Nurs J 2010, 20:23-29.
• [35]Scott SE, Grunfeld EA, Main J, McGurk M: Patient delay in oral cancer: a qualitative study of patients’ experiences. Psychooncol 2006, 15:474-485.
• [36]Bränström R, Hedblad M-A, Krakau I, Ullén H: Reasons to seek medical attention for a skin check-up: the layman’s perspective. Eur J Public Health 2003, 13:294-298.
• [37]Pedersen AF, Olesen F, Hansen RP, Zachariae R, Vedsted P: Social support, gender and patient delay. Br J Cancer 2011, 104:1249-1255.
• [38]De Nooijer J, Lechner L, de Vries H: Help-seeking behaviour for cancer symptoms: perceptions of patients and general practitioners. Psychooncol 2001, 478:469-478.
• [39]Salander P, Bergenheim AT, Hamberg K, Henriksson R: Pathways from symptoms to medical care: a descriptive study of symptom development and obstacles to early diagnosis in brain tumour patients. Fam Pract 1999, 16:143-148.
• [40]Walter FM, Humphrys E, Tso S, Johnson M, Cohn S: Patient understanding of moles and skin cancer, and factors influencing presentation in primary care: a qualitative study. BMC Fam Pract 2010, 11:62. BioMed Central Full Text
• [41]Andersen RS, Vedsted P, Olesen F, Bro F, Søndergaard J: Patient delay in cancer studies: a discussion of methods and measures. BMC Health Serv Res 2009, 9:189. BioMed Central Full Text
• [42]Weller D, Vedsted P, Rubin G, Walter FM, Emery J, Scott S, Campbell C, Andersen RS, Hamilton W, Olesen F, Rose P, Nafees S, van Rijswijk E, Hiom S, Muth C, Beyer M, Neal RD: The Aarhus statement: improving design and reporting of studies on early cancer diagnosis. Br J Cancer 2012, 106:1262-1267.
• [43]Burgess CC, Ramirez AJ, Richards MA, Love SB: Who and what influences delayed presentation in breast cancer? Br J Cancer 1998, 77:1343-1348.
• [44]Scott SE, Grunfeld E, McGurk M: Patient ’ s delay in oral cancer: a systematic review. Commun Dent Oral Epidemiol 2006, 34:337-343.
• [45]Andersen RS, Risør MB: The importance of contextualization. Anthropological reflections on descriptive analysis, its limitations and implications. Anthropol Med 2014, 0:1-12.
• [46]Pack G, Gallo J: The culpability for delay in the treatment of cancer. Am J Cancer 1938, 33:443-462.
• [47]Granek L, Fitzgerald B, Fergus K, Clemons M, Heisey R: Travelling on parallel tracks: Patient and physician perspectives on why women delay seeking care for breast cancer symptoms. Can Oncol Nurs J 2012, 22:101-106.
• [48]Courtney RJ, Paul CL, Sanson-Fisher RW, Macrae F, Attia J, McEvoy M: Current state of medical-advice-seeking behaviour for symptoms of colorectal cancer: determinants of failure and delay in medical consultation. Colorectal Dis 2012, 14:e222-e229.
• [49]Brouha XDR, Tromp DM, Hordijk G-J, Winnubst JAM, de Leeuw JRJ: Oral and pharyngeal cancer: analysis of patient delay at different tumor stages. Head Neck 2005, 27:939-945.
• [50]Low EL, Waller J, Menon U, Jones A, Reid F, Simon AE: Ovarian cancer symptom awareness and anticipated time to help-seeking for symptoms among UK women. J Fam Plan Reprod Heal care 2013, 39:163-171.
• [51]Scott SE, Walter F: Studying help-seeking for symptoms: The challenges of methods and models. Soc Peronal Psychol Compass 2010, 4:531-547.
• [52]Neal RD, Din NU, Hamilton W, Ukoumunne OC, Carter B, Stapley S, Rubin G: Comparison of cancer diagnostic intervals before and after implementation of NICE guidelines: analysis of data from the UK General Practice Research Database. Br J Cancer 2014, 110:584-592.
• [53]Van Osch L, Lechner L, Reubsaet A, de Nooijer J, de Vries H: Passive cancer detection and medical help seeking for cancer symptoms: (in)adequate behavior and psychosocial determinants. Eur J Cancer Prev 2007, 16:266-274.
• [54]NICE: Referral Guidelines for Suspected Cancer. 2005.
• [55]Hamilton W: The CAPER studies: five case–control studies aimed at identifying and quantifying the risk of cancer in symptomatic primary care patients. Br J Cancer 2009, 101:S80-S86.
• [56]Be Clear on Cancer Campaign http://www.cancerresearchuk.org/cancer-info/spotcancerearly/naedi/beclearoncancer/background webcite