Elsevier

Cancer Epidemiology

Volume 35, Issue 1, February 2011, Pages 83-89
Cancer Epidemiology

The role of the doctor and the medical system in the diagnostic delay in pediatric malignancies

https://doi.org/10.1016/j.canep.2010.07.009Get rights and content

Abstract

Aim: We evaluated the roles of the doctor and the medical system in Israel in the diagnostic delay of childhood malignancies. Methods: We investigated the factors affecting the delay in the diagnosis of childhood malignancies in 315 children with solid malignancies, diagnosed and treated in Rambam Medical Center (RMC), between 1993 and 2001. Those factors were divided into two groups: ‘Healthcare-system-related parameters’, (factors directly related to the medical system), and ‘Patient-related parameters’ (factors that are not part of the medical system, but directly affect medical judgment and decisions, including factors related to the tumor). We also took into consideration epidemiological, social, and medical issues. Results: The main ‘Healthcare-system-related parameters’, which were found to influence the delay in diagnosis, were the type of medical authority that was initially consulted; the specialty of the first doctor; the number of additional doctors whom the child had visited, and the number of times the child had visited the first doctor. The main ‘Patient-related parameters’ found to have an impact on the delay in diagnosis were the age of the child, the tumor type, and the presenting symptom. Conclusions: The education and awareness of doctors at the primary healthcare clinics must be improved. We suggest ways of improving the approach of doctors and managing a child with a suspected malignancy.

Introduction

In Israel, approximately 350 children aged 0–14 years are diagnosed with cancer each year, with a rate of 27 children per 100,000 [1].

Israel has a population of over seven million people—approximately 80% Jews and 20% non-Jews, mostly Arabs. The majority of the population is urban and Israel is rated among middle-income countries. Forty-seven general hospitals presently operate in the country, with a total of some 13,000 general beds. The healthcare system has over 2000 community-oriented primary care clinics throughout the country, operated by the sick funds, the Ministry of Health or the municipalities. The Ministry of Health operates a successful community health service: a nation-wide public network of 850 mother-and-child-care centers, which offer low-cost, easily accessible services. Medical services are provided through four health insurance companies, known as sick funds. The medical services are based upon a national health insurance law, which sets forth the state's responsibility to provide health services for all residents of the country. The law stipulates that a standardized offering of medical services, including hospitalization, will be supplied by the sick funds.

Over the last few years, a dramatic improvement in the cure rates have been achieved for many pediatric cancers, mainly due to progress in laboratory and imaging techniques, and the use of new therapeutic regimens. Yet delay in diagnosis may affect survival rates and should be considered [2]. Early diagnosis improves clinical outcome and can benefit family coping strategies and relationships with healthcare professionals [3].

Childhood cancer can be difficult to diagnose in the primary care setting: The index of suspicion tends to be low because of the relative rarity of malignancies in children, and the insidious nature of cancer in this age group. Furthermore, the presenting signs and symptoms are often nonspecific and mimic those of common childhood conditions. Appropriate mass screening techniques have not been available for the early detection of childhood tumors [3], [4], [5]. For all these reasons, there is a high risk that parents delay seeking medical advice and physicians delay diagnostic procedures [6], [7].

The interval between the onset of the symptoms and the final diagnosis is called the ‘lag time’ (Fig. 1). Most studies have suggested that a shorter lag time could improve the prognosis, and that prolongation of the diagnosis period will badly affect the prognosis [3], [4], [5], [8].

Considerable progress has been made during the last few years, worldwide, in reducing mortality from common pediatric illnesses, leading to the observation that cancer accounts nowadays for a higher proportion of deaths in childhood, especially in developing countries [9]. Nevertheless, excellent cure rates have been achieved for many pediatric cancers; therefore, studies now focus on reducing the side effects of therapy rather than increasing survival [10].

In adults, the lag time has been associated with prognosis, hence its importance. The focus on reducing unnecessary delays in cancer treatment stems from the belief that the earlier the disease is detected, the more quickly multidisciplinary care can be instigated and the better the outcome [11]. For example, in women with breast cancer, independently of other variables, a short lag time is correlated with a good prognosis and vice versa [12], [13], [14]. Much research has been carried out into factors that cause delays in patients’ presentation to health services and clinician diagnoses for many cancers in this age group [15], [16], [17]. Allgar and Neal [17] reported that breast cancer patients had the shortest delays compared with other cancers, while prostate cancer had the longest delays. They found that patient and primary care delays contributed to larger proportions of the total diagnostic delay than did referral delays and secondary care delays. Patients who reported seeing their GP (General Practitioner) prior to diagnosis experienced longer delays.

Several studies have analyzed the time to diagnosis in specific adult cancers, especially lung and chest cancers [18], [19], bladder tumors [20], breast tumors [12], [13], [14], [21], and sarcomas [22], [23], [24]. Regarding sarcomas, Brouns et al. [22] concluded that the most frequent reason for doctor delay was a misdiagnosis from the start, leading to no or inadequate investigation. Factors associated with a longer doctor delay [23], [24] were: long duration of symptoms, tumors originating in the pelvis or spine, the presence of symptoms mimicking routine orthopedic problems, patients with Ewing's sarcomas, and treatment given for other (incorrect) diagnoses proceeded for too long, despite the divergence of the clinical picture from that expected from the original diagnosis.

In comparison to the attention given to cancers in adults, the process of getting to the accurate diagnosis of pediatric malignancies has been neglected, despite recent observations that early detection of childhood cancer could reduce mortality [25], [26], [27]. This lack of attention might be partly attributable to the rarity of childhood cancer coupled with the low importance of children's health issues in governments’ policy. Nevertheless, when childhood cancer happens, its effects are devastating, and survivors and their families have to cope with its dreadful consequences [28].

The issue of delay in diagnosis in childhood malignancies has been investigated in several studies throughout the world, mainly in the UK [4], [29], the USA [2], [3], [5], [10], Sweden [8], Canada [30], [31] Mexico [32], and South Africa [33], [34]. The majority of the studies have suggested that a shorter lag time could improve the prognosis.

The main factors that were found to influence the overall lag time in childhood cancer include: the patient's age (shorter lag times in younger children [3], [4]); the biology of the neoplasm (shortest lag times for Wilms’ tumor and leukemias [2], [3], [4], [5]); the anatomical site (CNS tumors are diagnosed more speedily if they are infratentorial than if they are supratentorial [3]); the perception of the disease by the parents [8], [29], [35]; parameters related to the healthcare system (the physician's index of suspicion [2], [33] and the lack of organization within the healthcare system [33], [34]); and societal characteristics (low cure rates in low-income countries attributed to the advanced stage of disease at diagnosis, due to delayed diagnosis [32], [36], [37]).

In our study we investigated the determinants of the diagnosis interval in children with solid malignancies. The study included personal, epidemiological, socioeconomic, and medical parameters. We defined the demographic and systemic characteristics of the cases, in which there was a delayed diagnosis, in order to suggest ways of minimizing the time to diagnosis, thus improving the prognosis. Doctor delay and parent delay were specifically analyzed to reach practical conclusions and to better train and educate parents and physicians. In our previous report [38], we described the parameters that had an impact on the overall delay in diagnosis (lag time). Among the demographic and personal parameters, the best predictors of delay in diagnosis were the age of the child and the father's ethnic origin: when the father's ethnic origin was non-Ashkenazi and as the child's age increased, the lag time became longer.

In the present report we highlight the parameters and factors that influence the delay in diagnosis with regard to the medical system. We explore doctor-related factors affecting the lag time in a multidimensional approach. We distinguish between ‘Healthcare-system-related parameters’, being a part of the medical system or determined by it, and ‘Patient-related parameters’, which are parameters not directly related to the medical system, but rather concerning the child, its family, and the tumor itself, and were found to have an impact on doctor delay. We suggest ways to improve doctors’ approach and the handling of a child with a suspected malignancy.

Section snippets

Patients and methods

We performed a retrospective analysis on 347 children (aged 0–20 years) diagnosed with solid malignancies at the Rambam Medical Center in Haifa, Israel, from 1993 to 2001.

The study involved a questionnaire survey and analysis of medical records. Records from 315 cases were collected, including data from 53 deceased children (Table 1). For each child a questionnaire was administered to the parents. The questionnaire included 73 questions concerning the family (socioeconomic and epidemiological),

Results

Three hundred and forty-seven cases of pediatric solid tumors were included in our study. Complete information was available for 315 cases. Of the 315 cases, 174 (55.2%) involved male patients and 141 (44.8%) involved female patients. The age distribution is summarized in Table 1.

Of the 315 cases, 174 (55.2%) were Jewish, 82 (26%) were Muslims, 24 (7.6%) were Christians, and 34 (10.8%) were Druze (One child was of mixed religion.).

With regard to tumor type 79 (25.1%) were lymphomas and other

Discussion

The diagnosis of many childhood cancers is not straightforward. Symptoms are varied and nonspecific, and unlikely to immediately suggest a diagnosis of cancer. A certain degree of delay in diagnosis appears unavoidable as alternative diagnoses will be investigated at the outset [4], [26].

Although in our study it seems that shortening the diagnosis period is associated with improved prognosis, we must remember that some confounding factors could have an impact on both survival and delay in

Conclusion

In summary, some important conclusions can be drawn from our study, combined with the findings from previous studies.

First, shortening of the diagnostic period may improve the prognosis.

Second, a high index of suspicion should be maintained, especially when the symptom is persistent and progressive, rather than intermittent and variable.

The education and awareness of GPs at the primary healthcare clinics has to be improved; if the doctor is unable to find any abnormality after examination he

Financial disclosure and conflict of interest

The authors affirm that they have no financial affiliation or involvement with any commercial organization with direct financial interest in the subject or materials discussed in this article.

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