https://orcid.org/0000-0002-4877-2697
Abstract
Objective
Patients with psychiatric disorders are at risk of experiencing suboptimal cancer diagnostics and treatment. This study investigates how this patient group perceives the cancer diagnostic process in general practice.
Design
Cross-sectional study using questionnaire and register data.
Setting
General practice in Denmark.
Subjects
Patients diagnosed with cancer in late 2016 completed a questionnaire about their experiences with their general practitioner (GP) in the cancer diagnostic process (n = 3411). Information on pre-existing psychiatric disorders was obtained from register data on psychiatric hospital contacts and primary care treated psychiatric disorders through psychotropic medications. Logistic regression was used to analyse the association between psychiatric disorders and the patients’ experiences.
Main outcome measures
Patients’ experiences, including cancer worry, feeling being taken seriously, and the perceived time between booking an appointment and the first GP consultation.
Box 1. Included survey items on the patients’ experiences
Results
A total of 13% of patients had an indication of a psychiatric disorder. This group more often perceived the time interval as too short between the first booking of a consultation and the first GP consultation. Patients with primary care treated psychiatric disorders were more likely to worry about cancer at the first presentation and to share this concern with their GP compared with patients without psychiatric disorders. We observed no statistically significant association between patients with psychiatric disorders and perceiving the waiting time to referral from general practice, being taken seriously, trust in the GP’s abilities, and the patients’ knowledge of the process following the GP referral.
Conclusion
The patients’ experiences with the cancer diagnostic process in general practice did not vary largely between patients with and without psychiatric disorders. Worrying about cancer may be a particular concern for patients with primary care treated psychiatric disorders.
KEY POINTS
It is unknown how patients with psychiatric disorders perceive the cancer diagnostic process in general practice.
This study found an association between having a psychiatric disorder and more often perceiving the time interval as too short between the first booking of a consultation and the first GP consultation.
An association was found between having a primary care treated psychiatric disorder and being worried about cancer and more often sharing these concerns with the GP.
Experiences with the cancer diagnostic process in general practice did not differ between patients with a hospital treated psychiatric disorder and patients with no indication of psychiatric disorders.
Background
The prognosis of cancer is inferior in patients with psychiatric disorders compared to those without such disorders [Citation1,Citation2], and cancer is a leading cause of death among patients with pre-existing psychiatric disorders [Citation3,Citation4]. Potential explanations could be challenges in the cancer diagnostic process and suboptimal treatment of cancer in patients with psychiatric disorders [Citation1,Citation5,Citation6]. Multiple factors in the cancer process can influence the cancer prognosis in this population. These factors include lower cancer screening participation [Citation7], longer intervals before diagnosis [Citation8–13], late-stage disease at diagnosis [Citation14], diagnosis through unplanned or emergency admission [Citation15,Citation16], no or insufficient treatment [Citation5,Citation17], and insufficient follow-up and end-of-life care [Citation5].
In health care systems with general practitioner (GP) gatekeeping, most cancer patients are diagnosed after presentation in general practice [Citation18,Citation19]. Yet, studies indicate that patients with severe psychiatric disorders often deal with multiple challenges, which in turn can be complex to treat in general practice [Citation20,Citation21]. Several medical needs and overshadowing of symptoms may challenge the diagnostic workup of physical illness, including cancer, in patients with psychiatric disorders [Citation8,Citation22–25]. Limited time has been suggested as a barrier for treating both physical and mental problems during a consultation [Citation20,Citation26]. From the patient’s perspective, communicating symptom experiences can be difficult, and some patients feel that they are not taken seriously by their health care provider [Citation27]. Additionally, the stigma around psychiatric disorders may hinder smooth cancer diagnostics in primary care [Citation5,Citation20], and anticipation of being stigmatised may be a barrier for the patient to disclose symptoms to a health professional [Citation5,Citation28]. However, it is unknown if this is true in patients with a psychiatric disorder who are also diagnosed with cancer.
We aimed to investigate how patients with psychiatric disorders experience the cancer diagnostic process in general practice. We hypothesised that patients with a pre-existing psychiatric disorder would have less favourable experiences with the cancer diagnostic process in general practice, e.g. would less often share their worry with a general practitioner (GP), would have lower confidence in their GP’s performance, would be more unsure about the process after referral from general practice, and would perceive the time to first GP consultation and first referral as longer compared to patients without psychiatric disorders. We also hypothesised that these associations would vary with the severity of psychiatric disorders.
Methods
We conducted a cross-sectional study based on questionnaire data on patients’ experiences with the cancer diagnostic process and used the Danish civil registration (CPR) number to link with register-based information on psychiatric disorders and potential confounders [Citation29].
Setting
The health care system in Denmark is publicly funded and offers free access to most medical services. General practice serves as a gatekeeper to most specialised services in the health care system, and 98% of the population is registered with a specific GP, whom the patient must consult for medical advice [Citation30]. When cancer is suspected, urgent referral is possible for more than 30 cancer types through specific cancer patient pathways with well-defined steps and time frames [Citation31].
Population
The population comprised patients who had been registered with a cancer diagnosis in the last six months of 2016 in the Danish National Patient Registry (coded according to the International Classification of Diseases, version 10 (ICD-10): C01-C99, excluding C44) and who participated in the survey on newly diagnosed cancer (in Danish: Barometerundersøgelsen) by the Danish Cancer Society [Citation32] (see , Flowchart).
Psychiatric disorders
Information on psychiatric disorders was based on Danish national registers. As only patients with hospital contacts are recorded with an ICD-10 diagnosis in the registers, we included two definitions of psychiatric disorders to capture both psychiatric disorders requiring hospital contacts and psychiatric disorders treated mainly in general practice. Hospital treated psychiatric disorders were defined as disorders in patients with hospital contacts concerning a psychiatric disorder that was registered in the Danish National Patient Registry (DNPR) or the Danish Psychiatric Central Research Register (DPCR) for up to five years prior to the cancer diagnosis with the following ICD-10 diagnosis codes: organic disorders (ICD-10: F00-F09), schizophrenia and psychotic disorders (ICD-10: F20-F29), substance use disorders (ICD-10: F10-F19), mood disorders (ICD-10: F30-F39), anxiety disorders (ICD-10: F40-F41), stress disorders (ICD-10: F43) or eating disorders (ICD-10: F50). Primary care treated psychiatric disorders were defined as disorders in patients who were not registered with a hospital treated psychiatric disorders but were registered in the Register of Medicinal Product Statistics with a minimum of two prescriptions for up to two years prior to the cancer diagnosis with the following anatomical therapeutic chemical (ATC) codes: antidepressants (ATC: N06A), anxiolytics (ATC: N05B) or antipsychotics (ATC: N05A).
Patients’ experiences
A survey among newly diagnosed cancer patients was used to obtain information about the patients’ experiences with the cancer diagnostic process in general practice. The survey was sent by surface mail to patients at 4–7 months following their cancer diagnosis and asked retrospectively about their experiences with the diagnosis, treatment and follow-up of cancer [Citation32].
To assess the GP’s involvement in the cancer diagnostic process, we included the following item: How did the process of diagnosing your cancer begin? The response option ‘I was in contact with a GP’ was compared with the response options ‘I was in contact with a medical specialist outside the hospital (e.g. gynaecologist or dermatologist)’, ‘I was being treated for another disease at the hospital’, ‘I was urgently admitted to the hospital’ and ‘Other’. The response option ‘screening (for breast, cervical or colon cancer)’ was omitted, as symptoms were unlikely to have appeared prior to participation in an organised screening programme.
The eight items focussed on the patients’ experiences, and the categorisation of response options is shown in Box 1.
Statistical analysis
Proportions of patients with psychiatric disorders were presented according to the first point of contact in the cancer diagnostic process in general practice.
The following analyses were restricted to patients who responded that their diagnostic process began by contacting a GP. Logistic regression was used to analyse the association between psychiatric disorders and the patients’ experiences. Two items (regarding perceived waiting time) had more than two response categories. Therefore, for these items, multinomial logistic regressions [Citation33] were conducted, with the reference group representing patients who assessed the waiting time as appropriate (Appendix A). For all analyses, a model adjusted for sex and age groups was presented, followed by a model adjusted for sex, age, education (according to the International Standard Classification of Education) [Citation34], marital status, physical comorbidity measured by the Charlson Comorbidity Index (CCI) [Citation35] and cancer type.
Two sets of analyses were conducted. First, all psychiatric disorders were combined. Second, psychiatric disorders were divided into hospital treated psychiatric disorders and primary care treated psychiatric disorders.
Sensitivity analyses were conducted. In these, we included psychiatric disorders for up to 10 years prior to the cancer diagnosis.
All analyses were performed with Stata, version 16.1.
Results
First point of contact in the diagnostic process
Among the 5306 who responded to the item regarding place of presentation, 3411 (64%) patients stated that the cancer diagnostic process began by contacting a GP. A statistically significant higher proportion of patients with any psychiatric disorders were diagnosed without involvement of the GP (40.0%) compared with patients with no psychiatric disorder (35.0%) (p < 0.01) (data not shown).
Psychiatric disorders in patients who began their diagnostic process by contacting a GP
In total, 13.3% of patients who stated that the cancer diagnostic process began by contacting a GP had a psychiatric disorder (8.1% had a primary care treated psychiatric disorder, and 5.2% had a hospital treated psychiatric disorder). Respondents with any psychiatric disorder more often lived alone, had lower education, scored higher on the CCI, and were aged 50–70 years compared with patients without psychiatric disorders ().
Table 1. Health-related and sociodemographic characteristics of patients who began the diagnostic process in general practice (n = 3411).
Patients’ experiences
Patients with a primary care treated psychiatric disorder had higher odds of being worried about having cancer at their first GP consultation in the cancer pathway compared with patients with no psychiatric disorder (OR: 1.44, 95% CI: 1.06–1.96) and had higher odds of sharing their concerns with a GP (OR: 1.52, 95% CI: 1.07–2.18) ().
Table 2. Odds ratio (or) of the patients’ psychosocial experiences with the cancer diagnostic process in general practice (n = 3411).
The data indicated no association between hospital treated psychiatric disorders and the patients’ experiences ( and ).
Table 3. Odds ratio (or) for patients’ experiences with the GP during the cancer diagnostic process in general practice (n = 3411).
Patients with any psychiatric disorder had a higher relative risk of perceiving the time interval as too short between the first booking of a consultation and the first GP consultation (relative to perceiving that the time interval was appropriate) compared with patients without a psychiatric disorder ().
Table 4. Relative risk ratio (RRR)Table Footnotea of patient-perceived waiting time during the cancer diagnostic process in general practice (n = 3411).
Sensitivity analysis
When we included psychiatric diagnoses for up to ten years prior to the cancer diagnosis, more results became statistically significant; among others patients with hospital treated psychiatric disorders were more likely to worry about cancer at the first presentation, and patients with (any) psychiatric disorder were more likely to share their worry about cancer at the first presentation (Appendix Tables B1 and C1). Also, including patients with any hospital treated psychiatric disorder for up to 10 years prior to the diagnosis revealed that this group had a higher relative risk of perceiving the time interval as too long between the first booking of a consultation and the first GP consultation (in addition to perceiving the time to short) (Appendix Table D1).
Discussion
Principal findings
Patients with (any) psychiatric disorder perceived that the time interval between booking an appointment and having the first GP consultation was too short. Patients with a primary care treated psychiatric disorder were more likely to worry about cancer when presenting the first symptoms to their GP and were more likely to share their concern with the GP than patients without psychiatric disorders. Our data showed no association between having a hospital treated psychiatric disorder and experiences with the cancer diagnostic process in general practice.
Strengths and limitations
The study population originated from a validated national register [Citation37] containing data on cancer type, psychiatric disorders, and socioeconomic status, and with no prior exclusions. The questionnaire used was part of the continuous monitoring of cancer patients in Denmark by the Danish Cancer Society. Thus, the survey has previously been pilot-tested and used among cancer patients [Citation32].
The data sources included valid national registers, which contain complete data on the social and health characteristics of the individual patients [Citation37,Citation38], and survey data, which allowed us to gain insight into, for example, the patients’ experiences.
The study has some limitations. Information bias cannot be ruled out, and it could be hypothesised that patients with psychiatric disorders may have recalled the cancer diagnostic process in general practice differently than patients without psychiatric disorders. Selection bias is likely, as patients with psychiatric disorders were less likely to answer the survey (see Appendix Table E1). Further, 11.0% of the patients with psychiatric disorders had an organic disorder in our previous study [Citation15], whereas the corresponding figure was only 3.5% in this study (however, the results did not change markedly when excluding the 16 patients with an organic disorder; results not shown).
It could be hypothesised that patients who never consulted their GP in the cancer pathway would be more ill at the diagnosis [Citation39,Citation40]. Further, patients who did not consult their GP in the cancer diagnostic process may also be more likely to have had previous negative experiences with their GP and more likely to feel not taken seriously. The present study focussed on patients attending their GP to initiate the diagnostic pathway and was restricted to patients who had consulted their GP for symptoms.
Another limitation is the statistical power, which may have caused type 2 errors as some of the groups are small. This might explain the few statistically significant findings due to the wide confidence intervals.
Figure 1. Flowchart.
There are no internationally accepted guidelines or standards for defining psychiatric disorders. This study used data from national registers to assess psychiatric disorders [Citation37,Citation41] and included variables to capture both psychiatric disorders requiring hospital contact and psychiatric disorders treated mainly in general practice. However, mild depression and anxiety disorders, for example, are often only treated with psychotherapy and were, therefore, not included. Additionally, psychotropic drugs may be prescribed on other indications than mental disorders, e.g. pain conditions, which may lead to misclassification. Further, we included prescriptions issued in the two years prior to a cancer diagnosis and psychiatric diagnoses registered in hospitals during the five years prior to a cancer diagnosis. The different time frames were chosen to avoid misclassifying psychiatric disorders by expanding the time frame for inclusion. When including hospital diagnoses for up to ten years prior to the cancer diagnosis, we saw that this group was also statistically significantly more likely to worry about cancer at the first presentation, which could be caused by enhanced data strength (see Appendix Table B1).
Comparison with other studies
To our knowledge, the perceived experience of the cancer diagnostic process in general practice has not previously been studied by questionnaire data among patients with psychiatric disorders. We found that the results varied for patients with a hospital treated and a primary care treated psychiatric disorder. This was, however, not surprising because psychiatric disorders treated in primary care are probably often less severe than disorders treated in the hospital, but also because the underlying diseases differ in the two groups, with a higher proportion of depression among patients with a primary care treated psychiatric disorder and a higher proportion of substance abuse in the group with hospital treated psychiatric disorders.
We found a small, statistically significant higher proportion of patients with hospital treated psychiatric disorders that were diagnosed without involvement of the GP in the cancer diagnostic process. This is in line with the results from our previous register-based study in Denmark, where patients with psychiatric disorders were more often diagnosed in an unplanned route [Citation15].
Surprisingly, patients with (any) psychiatric disorders more often perceived the time interval as too short between the first booking of a consultation and the first GP consultation. This contrasts our hypothesis and other studies that emphasise rapid referral and cancer diagnostics as the general preference of patients [Citation42,Citation43]. The explanation for this finding is unclear from this study. One potential explanation could be reduced transportation mobility in this patient group; they are often single () and may more often perceive public transportation as difficult (due to e.g. anxiety). Reduced transportation mobility has been found to be a barrier to health care as it may cause delayed or cancelled medical care appointments in some patient groups [Citation44,Citation45] and could also indicate that some patient groups need more time to arrange transportation. Further, research has found that patients with psychiatric disorders more often attend to avoidance strategies [Citation39,Citation40]. Hence, if help care seeking in this patient group was postponed as a consequence of avoidance, this could be one of the explanations for this finding. Thus, an immediate time for consultation may have caused the patient to perceive that the GP assessed the potential symptom as serious and thereby triggered anxiety. Some patients with psychiatric disorders may need more time to process symptoms and experiences. Therefore, an appointment immediately following the day of contact may be overwhelming for these patients if avoidance is the preferred initial coping strategy. Studying these issues with the use of qualitative research methods could possibly add to the understanding of these potential mechanisms.
Worry is a common symptom in patients with psychiatric disorders [Citation46,Citation47]. The present study confirms that patients with primary care treated psychiatric disorders worried more about cancer when presenting the first symptoms to their GP and were also more likely to share their worry with their GP than patients with no psychiatric disorders, which could indicate a positive relation to the GP. However, the group with primary care treated psychiatric disorders consisted largely of patients with (mild) anxiety and depression, where worry may be more common [Citation46,Citation47] than in the patient groups that were represented in the hospital treated psychiatric disorders category.
Implications
This study showed that patients with psychiatric disorders may be more likely to worry about cancer when presenting symptoms to their GP. Given that this population was diagnosed with cancer, patient worry can be regarded as positive, as it has been associated with the GP suspecting cancer [Citation48]. Yet, if worry is present regardless of a subsequent cancer in patients with psychiatric disorders [Citation46,Citation47], the GP must balance between patient worry due to psychiatric distress and worry due to potential cancer symptoms. This may represent a diagnostic challenge in this patient group as the GP’s suspicion of cancer can be based on, for example, the patient’s worry [Citation48].
Contrary to our hypothesis, patients with psychiatric disorders more often perceived the time interval as too short between the first booking of a consultation and the first GP consultation. However, it is not advisable to introduce deliberate delays in the time to consultation. Rather, the GP can benefit from this knowledge when consulting the patient, ensuring that the patient is calmed and explaining the reason for an immediate consultation time.
In general, no large differences were seen between patients with a pre-diagnostic psychiatric disease and those without when attending general practice as a first step in the diagnosis of cancer. From this study, it is not clear if it is caused by selection bias, or rather it could indicate the provision of equal care, irrespective of psychiatric disease, in general practice. The latter hypothesis should be explored further with qualitative research methods to understand the mechanisms behind the findings.
Conclusion
In this study combining survey and registry data, patients with psychiatric disorders often perceived the time interval as too short between the first booking of a consultation and the first GP consultation. Patients with primary care treated psychiatric disorders were more worried about cancer when presenting symptoms to their GP and shared their concern more often with their GP than patients without psychiatric disorders. Yet, no large variations were seen between patients with and without psychiatric disorders, which could suggest equal provision of care. However, the results of this study should be interpreted in light of the limitations, especially the selection of patients who participated in the patient survey, and the findings should be confirmed in studies using other research methodologies as well.
Ethics statement
The project is registered in the Record of Processing Activities at the Research Unit for General Practice, Aarhus (ID 951) in accordance with the Danish Data Protection Act (Act No. 502 of 23 May 2018) and the General Data Protection Regulation (GDPR) by the EU. As the data are based solely on registry and questionnaire data, approval by the Committee on Health Research Ethics in the Central Denmark Region was not required.
Authors contributions
LFV and PV conceived the concept of the study. All authors contributed with input and critical revision of the methods, analyses and the contents of the paper. AZF contributed with statistical guidance and critical revision of the paper. LFV was primarily responsible for drafting the manuscript and the statistical analyses. All authors read and approved the final version of the manuscript.
Acknowledgements
We wish to thank the Danish Cancer Society and the Danish General Practice Fund for funding this project. The funders were not involved in conducting the study and interpreting the results. We also wish to thank Kaare Rud Flarup for assistance on data management and Lone Niedziella for linguistic revision. Most importantly, we wish to thank the Danish Cancer Society for collecting the data and the patients who participated in the survey, which made this research project possible.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Data availability statement
The data used in this study are stored at Statistics Denmark and can only be accessed by a remote access (VPN) server, which is in line with the Danish regulations of research. Therefore, the data used in this study are not openly available.
Additional information
Funding
References
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Appendices Appendix A.
Details of multinomial regression
Two outcome variables (regarding perceived waiting time) have more than two categories. Therefore, multinomial logistic regressions were conducted for these items, with the reference group representing patients who assessed the waiting time as appropriate.
Technically, multinomial regression calculates a ratio of two relative risks, i.e. a relative risk ratio (RRR). For example, the relative risk of perceiving the time interval as too long (vs. appropriate) was 1.13 higher for those with any psychiatric disorder than for those with no psychiatric disorder, i.e. RRR = 1.13.
How it was calculated:
Risk of ‘time interval = too long’ among any psych = 30/(30 + 44 + 285) = 0.083
Risk of ‘time interval = appropriate’ among any psych = 285/(30 + 44 + 285) = 0.794
Relative risk of ‘time interval = too long’ over ‘time interval = appropriate’ for any psych: RR = 0.083/0.794 = 0.105
Risk of ‘time interval = too long’ among none psych = 179/(179 + 188 + 1925) = 0.078
Risk of ‘time interval = appropriate’ among none psych = 1925/(179 + 188 + 1925) = 0.84
Relative risk of ‘time interval = too long’ over ‘time interval = appropriate’ for none psych: RR_ref = 0.078/0.84 = 0.093
The ratio of these two relative risks is RRR = RR/RR_ref = 0.105/0.093 = 1.13
Appendix B
Table B1. Odds ratio (OR) of the patients’ psychosocial experiences with the cancer diagnostic process in general practice according to patients diagnosed with psychiatric disorders for up to 10 years prior to the diagnosis (n = 3411).
Appendix C
Table C1. Odds ratio (OR) for patient’s experience with the GP during the cancer diagnostic process in general practice according to patients diagnosed with psychiatric disorders for up to 10 years prior to the diagnosis (n = 3411).
Appendix D
Table D1. Relative risk ratio (RRR) of patient-perceived waiting time during the cancer diagnostic process in general practice according to patients diagnosed with psychiatric disorders for up to 10 years prior to the diagnosis (n = 3411).
Appendix E
Table E1. Distribution of respondents and none-respondents.