Differences in the disclosure of a cancer diagnosis by healthcare professionals and the repercussions on patients’ emotions and health

doi:10.21203/rs.3.rs-2495051/v1

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Differences in the disclosure of a cancer diagnosis by healthcare professionals and the repercussions on patients’ emotions and health

https://doi.org/10.21203/rs.3.rs-2495051/v1

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Purpose: This study serves a dual purpose. Our initial aim is to study how a cancer diagnosis is disclosed to patients by different physicians (oncologists, consultants, and general practitioners). Secondly, we set out to study how the way in which oncologists normally communicate with their patients is related to variables such as anxiety, depression, coping mechanisms, and the perception of both their health and their quality of life.

Methods: A cohort of 177 patients from three cancer associations answered a battery of questionnaires on sociodemographic data, aspects of the disease, monitoring of the SPIKES protocol by the physician delivering the diagnosis, and their satisfaction with their communication with the oncologist (EORTC QLQ-COMU26). The patients also completed the ADAF screening questionnaire for detecting the presence of anxiety, depression, and dysfunctional coping strategies.

Results: The analyses recorded medium-low scores for some of the steps in the SPIKES protocol when delivering the diagnosis, and significant differences in some of them among the different physicians. It seems that oncologists perform this task better than consultants. In turn, satisfaction with the communication with oncologists is related to the levels of anxiety, depression, vulnerability, and the perception of health and quality of life among cancer patients.

Conclusions: Better communication strategies are called for among all healthcare professionals to enable them to deal with the task of breaking bad news to their patients. This will have a positive impact on patients’ emotional and health issues, while reducing stress and burnout among the physicians themselves.

anxiety

cancer

coping mechanisms

depression

oncology

physician-patient communications.

Although cancer is spreading at an ever-increasing rate¹, in recent decades both its diagnosis and its treatment have improved, which has meant that its associated mortality rate is falling². Yet the moment when the patient is given the diagnosis and told about the treatment they are going to receive constitutes a difficult process for the individual concerned and triggers a whole series of psychological consequences. Cancer patients are more likely than the general population to suffer from mental health issues, the posttraumatic stress disorder (PTSD), anxiety, depression, the risk of suicide, vulnerability, sleep and eating disorders, difficulties in concentrating, and a temporal hiatus in their ability to lead their everyday lives^{3– 6}.

These circumstances mean that the treatment of this disease needs to be biopsychosocial. The field of healthcare is increasingly adopting a humanistic perspective in the physician-patient relationship⁷. One of the more salient aspects being studied more closely in this field is the communication between the two. Different studies confirm the impact that the communication involving physicians may have on patients’ subsequent symptoms of depression, anxiety and PTSD, and may influence their therapy options⁸. The evidence shows that patients that have been properly informed about their illness tend to adhere more to their treatment, become more actively involved, and record a better long-term psychological and social adjustment^{6, 9}. It has also been reported that those patients that feel very satisfied with the information received are better at adjusting to their circumstances, helping to improve the quality of their lives and their environment^{10, 11}. This research seeks to further explore this matter, studying the possible relationship between communication and previously studied variables, such as depression, anxiety and quality of life, while also investigating the possible influence it may have on the coping strategies a patient applies and their perception of their state of health.

As regards the importance of patient-physician communication, the data show that the latter often have to address this task¹². A study by Baile et al.¹³ reports data from a survey conducted by the American Society of Clinical Oncology (ASCO) in which around 500 oncologists answered questions on aspects related to how and when they broke the bad news. It was revealed that 60% of the oncologists had to deal with the task of delivering bad news between five and twenty times per month, and as many as 15% of them had to do so more than twenty times over the same period. In spite of this rate, nonetheless, physicians receive little training in communication and the handling of emotions, with fewer than 10% of the oncologists surveyed receiving some kind of formal instruction for breaking bad news^13–15. This means that oncologists are often overwhelmed and drained by these tasks, experience little confidence in their communication skills, and face such tasks with a degree of dread, experiencing anxiety, fear and sadness. This situation becomes even more stressful when the physician is inexperienced, the patient is young, or the outlook for the treatment’s success is unfavourable^{16– 19}.

There are, nevertheless, tools than help with this communication, such as the SPIKES protocol, which is used in many countries as the cornerstone for training courses¹³. It involves six basic principles of communication and uses four successive steps to orchestrate the way in which a serious piece of news should be delivered. The authors published the first article on its use with cancer patients in 2000. Its application has subsequently been studied on several occasions with both cancer patients and other kinds of patients receiving other types of life-changing diagnoses, such as multiple sclerosis, HIV, or Parkinson’s. However, the diverse use made of this protocol by different physicians has barely been studied, and even less so in the case of cancer^{20– 23}. Other consultants or GPs are expected to be the ones dealing with this scenario. Hence the reason this study has evaluated and compared patients’ perception of the use of the protocol among the different healthcare professionals that informed them of their cancer diagnosis.

We therefore pursue two goals: 1) explore patients’ perception of the degree of compliance with best practices in the communication of their diagnosis, evaluating accordingly their adherence to the SPIKES protocol and comparing its use by physicians (oncologists, consultants, and GPs); and 2) study whether the way in which oncologists usually interact with their patients is related to psychological variables among the latter, such as anxiety, depression, their coping methods, and their perception of health and quality of life.

Participants and procedure

Data were gathered between September 2020 and March 2021 from 177 patients diagnosed with cancer belonging to three associations of patients suffering from this disease. The inclusion criteria were to be aged over 18, diagnosed with cancer and receiving treatment or being monitored, and signing an informed consent form for taking part in the research. The study was approved by the Ethics Committee at the Camilo José Cela University (05_CEI_2020_ComONC). The data were collected online using the Google forms platform. Table 1 presents the sociodemographic data. The variable on the prognosis for their disease was obtained from two consultant oncologists that considered the type of cancer and the time elapsed since the diagnosis was delivered. This information was used to analyse each one of the participants, and they were classified according to a more favourable or unfavourable cancer prognosis.

Table 1

Demographic and clinical characteristics of the participants (N = 177)
Variable (range)			N	%
Age (21–76)		Mean (SD)	52.07 (10.17)
Sex	Male		37	20.9
	Female		140	79.1
Nationality	Spanish		174	98.3
	Other		3	1.7
Civil status	Married/registered partnership		135	76.3
	Separated/divorced		18	10.2
	Single		20	11.3
	Widowed		4	2.3
Educational level	No studies		1	0.6
	Primary-Secondary		54	30.5
	Tertiary		122	68.9
Occupation	Homemaker		9	5.1
	Unemployed		15	8.5
	Student		2	1.1
	Retired		18	10.2
	Retired through illness or disability		55	31.1
	Active employment		62	35.0
	Other		16	9.0
Socioeconomic status	Low		6	3.4
	Medium-low		76	42.9
	Medium-high		93	52.5
	High		2	1.1
Type of cancer	Digestive		29	16.38
	Lymphoma		2	1.12
	Breast		28	15.81
	Ovarian		50	28.25
	Lung		54	30.51
	Uterus		8	4.52
	Uterus and colon		2	1.12
	Bladder		4	2.26
Prognosis	Better oncology prognosis		105	59.3
	Worse oncology prognosis		72	40.7
Who provided the diagnosis	GP		12	6.67
	Oncologist		20	11.11
	Another consultant		145	80.56
Mean time elapsed since the diagnosis in months (1-192)		Mean (SD)	47.65 (39.09)

Instruments

The sociodemographic variables were evaluated through an ad hoc questionnaire that included aspects related to the person’s illness (type of cancer, the physician disclosing the diagnosis, and the time elapsed since the diagnosis), as well as a self-assessment of their health and quality of life over the preceding week, on a scale of 1 (very poor) to 7 (excellent).

The evaluation of the disclosure of the diagnosis involved a Likert-type questionnaire with six items that ranged from 0 (not at all) to 10 (a great deal) that assessed the degree of adherence to the SPIKES communication protocol¹³. Specifically, the patients were asked whether the physician delivering the diagnosis (a) dedicated enough time to them, (b) made sure there was privacy for holding their conversation, (c) whether before disclosing the diagnosis the physician checked if the patient knew anything about the disease, (d) whether before disclosing the diagnosis the physician checked what the patient wanted to know and what they considered most important, (e) whether the physician helped the patient to express and handle their feelings: sadness, fear, anxiety or others, and (f) whether the physician clearly explained the next steps to be taken to address the disease.

Satisfaction with the communication was evaluated using the EORTC QLQ-COMU26 scale²⁴ drawn up by the quality-of-life group at the European Organisation for Research and Treatment of Cancer (EORTC) to assess patients’ satisfaction with their communication with the oncologist and the information received. The scale can be used with patients with any kind of cancerous tumour, at any stage of the disease, or at any time during treatment. It contains 26 items, with each one being scored on a Likert-type scale from 1 (not at all) to 4 (a lot), and has internal consistency (Cronbach’s alpha = 0.78).

Negative emotions and coping strategies were evaluated with the ADAF screening questionnaire (ADAF is the Spanish acronym for Ansiedad, Depresión, AFrontamiento – Anxiety, Depression and Coping). This instrument was developed by our research team for screening these issues in cancer patients. It has a two-dimensional structure: (a) negative emotions, with three items, one related to anxiety and two related to depressive symptoms; and (b) dysfunctional coping strategies, with two items; the first one measures vulnerability, and the second one avoidance. The items are scored on a four-point Likert-type scale from 0 (almost never) to 3 (almost always), and has suitable levels of reliability and good sensitivity and specificity (62%-83%)²⁵.

Statistical analyses

The first step involved calculating the mean, standard deviation, and frequency distribution for the study’s sociodemographic variables. The first of these objectives has involved the instrument’s items that evaluate the use of the SPIKES protocol as quantitative variables on a scale of 1–10. The mean descriptors, standard deviation, and normality have been calculated. Group comparisons have been made between the various healthcare physicians (GP/consultant/ oncologist) by means of the Kruskal-Wallis H test. The Bonferroni correction was applied for any significant differences.

The second step calculated the mean descriptors and standard deviation for the following variables: ADAF, EORTC QLQ-COMU26, and the perception of health and quality of life. This perception and the various psychological variables (anxiety, depression, and coping strategies) were predicted by means of a multiple regression with the following predictor variables: sex, educational level, socioeconomic status, occupation, prognosis for the disease, and overall score in the perceived satisfaction with physician-patient communication.

As regards the first step, Table 2 shows the descriptors for compliance with the SPIKES protocol by the different types of physicians and the differences between them in the Kruskal-Wallis H test.

Table 2

Results and comparison of compliance with the SPIKES protocol among physicians
Variables	Total		Oncologists (20)		GPs (12)		Consultants (145)		H (2); p	Post hoc Bonferroni
Variables	Mean	SD	Mean	SD	Mean	SD	Mean	SD	H (2); p	Post hoc Bonferroni
Sufficient time	7.25	2.78	8.45	1.39	7.17	2.88	7.09	2.89	2.94; .229
Privacy	7.48	2.93	8.45	1.70	7.75	3.33	7.32	3.02	1.79; .407
Inquired about my prior understanding of the disease	4.75	3.66	7.15	2.94	5.25	3.59	4.38	3.64	10.89; .004*	Oncologists > Consultants .003
Before breaking the news, the physician asked what I wanted to know	4.33	3.61	6.40	3.5	5.00	3.16	3.99	3.58	8.79; .012*	Oncologists > Consultants .011
The physician helped me to express and control my emotions	4.83	3.65	5.95	3.45	5.92	3.23	4.59	3.68	3.55; .169
Explanation of the next steps	6.75	3.37	8.20	2.09	7.58	3.55	6.48	3.45	5.14; .076
Total for the questionnaire	35.39	16.74	44.60	13.34	38.67	17.16	33.85	16.78	7.95; .019*	Oncologists > Consultants .019
SD: standard deviations.; H: Kruskal-Wallis; *p ≤ 0.05

The items with the lowest overall scores are those involving the prior questions on what the patients wanted to know before receiving the diagnosis, on their prior understanding of it, and on the expression and control of emotions. The highest-scoring items involved the privacy of the setting where the diagnosis was delivered and the sufficient time taken. The comparisons between the categories of physicians revealed significant differences in the overall scores for the protocol, the evaluation of the patient’s prior understanding of the disease, and the evaluation of those aspects that the patient wanted to know about and considered most important, with oncologists receiving the highest scores.

As regards the second of the objectives here, Table 3 presents the descriptors for the variables. The cut-off points for suspecting problems of anxiety and an inadequate use of coping strategies are 2, and 3 in the case of depression²⁵. Our study finds that all the scores are below this threshold. As regards the satisfaction that patients perceive, the items in the questionnaire have been added up, and the mean obtained is 72.96, a medium-high score. The perception the patients have of their state of health is 5.08, and 5.16 for their quality of life, within a range of 1 to 7.

Table 3

Descriptive statistics of the study variables
Variables (range)	Mean (SD)
ADAF Anxiety (0–3)	1.58 (0.85)
Depression (0–6)	2.54 (1.68)
Vulnerability (0–3)	0.91 (0.93)
Avoidance (0–3)	1.66 (0.87)
Satisfaction with physician- patient communication (0-104)	72.96(16.74)
Perception of health (1–7)	5.08 (1.30)
Quality of life (1–7)	5.16 (1.34)
SD: standard deviation

Continuing with the second objective, Table 4 presents the variables that may predict the patients’ levels of depression, anxiety, coping mechanisms, healthy lifestyle, and quality of life. Satisfaction with physician-patient communication predicts all the dependent variables, except for the avoidance coping strategy. The lower the perceived satisfaction with this communication, the higher the predicted levels of anxiety, depression, and vulnerability, and the worse the perception of health and quality of life. The figures for explaining these models vary between 2.5% and 15.1%.

Table 4

Linear regression analysis
Dependent variables	Variables predicted	β	p	Adjusted R²
Anxiety	Satisfaction with physician-patient communication	− .23	.002	.049
Depression	Satisfaction with physician-patient communication	− .23	.001	.151
	Prognosis	− .22	.011	.151
	Socioeconomic status	− .17	.018
Vulnerability	Satisfaction with physician-patient communication	− .29	< .001	.084
Avoidance	Educational level	− .17	.019	.025
Perception of health	Satisfaction with physician-patient communication	.29	< .001	.127
	Prognosis	.18	.010	.127
Perception of quality of life	Satisfaction with physician-patient communication	.26	< .001	.148
	Prognosis	.19	.006
	Socioeconomic status	.14	.041
Β: Beta/standardised coefficients

As regards the first objective, sufficient time has been devoted to the measures taken for ensuring privacy and explaining the next steps to be taken. However, the items related to the questions before the diagnosis is delivered and the help provided for helping the patients to express and control their emotions recorded low scores. In our opinion, these three steps may be related. The emotional impact on a patient receiving a cancer diagnosis is directly related to the gap between their perception of what is happening to them and the information received. This makes it difficult to adopt an empathetic approach to patients’ emotional reactions if we do not already understand their expectations of the information they are about to receive. These findings coincide with other studies. The aforementioned study by Baile¹³ states that the more challenging stages of the SPIKES protocol involve Emotions and empathic response, Perception and Invitation. From the patients’ perspective, the findings are similar. Cancer patients perceive that they were not asked about the information they wanted to receive before being given the diagnosis or what they would have considered most important²⁶. The steps of Perception, Invitation and Strategy/Summary also received low scores in the study by Marschollek²⁰, recording a generally low level of satisfaction with the information received.

One of this article’s contributions has been to compare the fulfilment of these steps by the various categories of physicians. It may therefore be noted that the two items with the lowest scores, namely, the questions prior to receiving the diagnosis, recorded significantly lower scores among consultants than among oncologists. These significant differences also appeared in the overall score recorded for the fulfilment of the protocol. These data show that consultants are probably less adept at performing these tasks than oncologists with greater experience in breaking bad news. Although none of them has received the necessary training, oncologists’ own everyday experience may enable them to improve certain aspects of their communications, whereas consultants do not have as many opportunities to do so. This may seem somewhat paradoxical considering that they are often the ones that have to deal with the initial cancer diagnosis. This clearly highlights the need for proper training. These differences have not been found for other steps in the protocol, such as devoting enough time, ensuring privacy, helping to express and control emotions, and explaining the next steps to be taken. It appears that certain aspects, such as the setting and the time involved, are handled well by all the physicians, as different studies have identified them as being very important for patients^{27, 28}. We have not found any other studies that compare the different healthcare professionals, but the need for training has been highlighted in other studies that evaluate nursing staff or GPs^{29, 30}.

It is interesting to note the low score recorded in the item “The physician helped me to express and handle my emotions: sadness, anger, fear, anxiety or others”. No significant differences have been found in this step, yet all the scores are low across the board for oncologists, GPs and consultants. This seems to be an aspect that clearly needs improving in physician-patient communications regardless of the category of healthcare professionals being evaluated. Oncologists themselves have already singled out these shortcomings in prior studies¹⁷. In turn, cancer patients have expressed the importance they give to the emotional support provided by their physicians at all stages of the disease³¹.

As regards the second study objective, none of the variables measured with ADAF scored more than the cut-off points for considering there was a high risk in the anxiety, depression or coping mechanisms used. High scores were recorded in the perception of health and quality of life, as well as in the satisfaction perceived in communication with oncologists. As regards this last aspect, the results reported in different studies are contradictory: in some studies, patients express their overall satisfaction with their communication with physicians, while the perceived satisfaction is low in other cases^{32, 33}.

Nevertheless, our study highlights that physician-patient communication impacts upon the variables studied. The satisfaction with the communication perceived by the patient has been related to all the variables studied except for the avoidance coping strategy. Better communication is associated with lower levels of depression, anxiety, and vulnerability, and with higher levels of perception of health and quality of life. These findings are consistent with those reported in other studies^{24, 29, 34–36}. Our study has also found other variables that are predictive. A good prognosis is linked to lower levels of depression, and a better perception of health and quality of life. A high educational level is related to a lesser use of an avoidance coping strategy, while a low socioeconomic status has an impact on higher levels of depression and a diminished perception of quality of life. Other studies also stress the importance of the stage of the patient’s disease and how this is related to their coping strategies and their emotional state³⁷. A further analysis of these last variables reveals that the prognosis, educational level, and socioeconomic status are more static variables over which a physician does not have so much control or leeway to make major changes. This again highlights the need to invest time and resources in teaching our healthcare professionals. This instruction in breaking bad news has a clear impact on improving their performance and on the actual patients’ perception of it, without the need to arrange an excessive number of teaching sessions^{38, 39}. This leads to higher levels of self-confidence among physicians and less stress when dealing with this task⁹. Other studies have already focused on this matter, suggesting that this instruction should be included as part of the degree in medicine and continue throughout post-graduate courses and professional careers²⁵. The data indicate that not all patients have the same preferences when talking to their physicians, and there is a need to be able to adapt to their different characteristics (age, sex, stage of the disease, educational level…). The training of healthcare professionals also needs to consider these aspects^{38, 40}.

Study limitations

Other studies have developed the “Questionnaire on the Evaluation of the Degree of Adherence to the SPIKES”²³, which consists of 17 items for assessing the fulfilment of the protocol. The variable perception of health and quality of life has been measured through a single item, although we were unable to use instruments that have been validated for assessing these variables because of the length of the evaluation period. The data were gathered online because this research coincided with the COVID-19 pandemic. Finally, we have used a sample that received their diagnosis a long time ago. This may have had an influence on the various variables and on patients’ perception of the communication with their oncologists, who they have been dealing with for a long time. It would be expedient to extend the study by exploring differences according to the time elapsed since the diagnosis and other variables, such as the current stage of the cancer.

Clinical implications

This study seeks to provide information on those aspects that need to be improved when giving patients their diagnosis and when maintaining a satisfactory communication with them. Identifying weaknesses in the communication process may lead to better strategies that will enhance the communication skills of all the healthcare professionals involved with cancer.

Our findings show that oncologists are better at delivering a cancer diagnosis than other healthcare professionals, and that communication with them is vital for predicting patients’ mental and health variables. We believe there is need to implement better communication strategies among all healthcare professionals to enable them to deal with the task of breaking bad news to patients. This will have a positive impact on the patients’ emotional state and health, while reducing stress and burnout among healthcare professionals themselves.

ACKNOWLEDGMENTS

This work was supported by Fundación Viatris. The authors thank the patients for their participation.

Ethical Approval

This study was approved by the Ethics and Clinical Research Committee of the Hospital Clínico San Carlos (CEIC nº19/265‐E) and was conducted in accordance with the ethical standards of the Declaration of Helsinki and its later amendments.

Funding

All authors had financial support from Fundación Viatris for the submitted work.

Competing interests

No financial relationships with any organizations that might have an interest in the submitted work in the previous 3 years; no other relationships or activities that could appear to have influenced the submitted work.

Authors' contributions

Conception and design of study: PN, EF, PE, JM, P-S and RD. Acquired the data: SE, EF, PE, JM, P-S, and A. Analyzed and interpreted the patient data: RS, PN, R, L, and RD. Drafted the article and overseed the final version of the article before submission: RS, PN, L, SE, and RD. All authors read and approved the final manuscript.

Availability of data and materials

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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No competing interests reported.

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Differences in the disclosure of a cancer diagnosis by healthcare professionals and the repercussions on patients’ emotions and health

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