Keywords
anxiety, depression, breast cancer, disease knowledge, disease information, quality of life
This article is included in the Oncology gateway.
anxiety, depression, breast cancer, disease knowledge, disease information, quality of life
Cancer, especially breast cancer, has been widely studied from different perspectives, including searching for information on the psychological impact of the disease.
Some authors describe information as a remarkable therapeutic tool that can be used in any physician-patient interaction.1 Better communication skills in patient-doctor consultation have been linked to higher patient satisfaction, better health outcomes, greater adherence to treatment2 and reductions in anxiety and mood disturbances.3–5
Patients who were more involved in their consultation also reported a higher quality of life (QoL). These findings emphasise the importance of facilitating patient participation in decision-making to achieve their desired involvement.6
To better address their wishes and thus minimise the fault with changes in information-sharing patterns between breast cancer patients, it is important to understand the need for information of women with breast cancer. Beyond patients’ access to healthcare information, the level of satisfaction with the information received is equally crucial, because satisfaction with healthcare information has been associated with increased quality of life and decreased levels of psychological distress.7,8 However, not all studies have demonstrated this association. Some studies have reported a negative relationship between access to and satisfaction with healthcare information and patient health outcomes.9,10 Another study did not find a significant influence of healthcare information on patients´ levels of depression, anxiety, and QoL.11
This study aimed to identify cancer patients’ perceptions of the quantity and quality of information provided in patient-physician consultations. It further intended to assess the QoL of patients and the possible relationship between a lack of information/QoL and higher levels of anxiety and depression.
This study can also contribute to a better understanding of patients’ needs and possibly allow the adjustment of medical consultations to address these needs. Breast cancer, due to its representativeness in terms of volume of day hospital treatments, encompasses patients at various stages of the disease; therefore, it is an effective and reproducible study population.
Sampling strategy
During the four-week study period, breast cancer patients receiving any line of treatment (chemotherapy or biological agents) at Instituto Português Oncologia Coimbra Francisco Gentil (IPOCFG) Day Hospital were identified and invited to participate in the study. Participation occurred only after providing signed informed consent. The same person (Marta Peixoto) explained what the project entailed and supplied the questionnaire to all patients included in this study; questionnaires were handed out in a printed-paper format and self-reported on that same day, during the hospital stay.
Eligible patients were adults (≥ 18 years old), who had a history of invasive breast cancer, and received any line of treatment (chemotherapy or biological agents) at IPOCFG Day Hospital in Portugal. A total of 188 patients with breast cancer consented to participate in the study and the questionnaires were completed between January and February 2020.
Exclusion criteria
Illiterate patients or those with cognitive impairment or hearing loss were excluded.
Approval (41/2019) was obtained from the Instituto Português de Oncologia de Coimbra Francisco Gentil Ethics committee in accordance with the Declaration of Helsinki.
Patients completed the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 (version 3), EORTC QLQ-INFO25, and Hospital Anxiety and Depression Scale (HADS), validated for Portuguese.
The QLQ-C30 (v. 3.0) is a validated, widely used questionnaire that is suitable for observational, experimental, and randomised clinical trials; it contains five functional scales (physical, role, emotional, social, and cognitive function), nine symptom scales (fatigue, nausea and vomiting, pain, dyspnoea, insomnia, appetite loss, constipation, diarrhoea, and financial difficulties), and one global health status/QoL scale. It also contains 30 questions, and the response format is a four-point Likert scale (1=not at all, 2=a little, 3=quite a bit, and 4=very much) for questions 1–28. The response format for questions 29 and 30 is a seven-point scale (ranging from 1 [very poor] to 7 [excellent]). The questions were answered by circling the option the patient considered applicable to him/her.
QLQ-INFO25 (hereafter referred to as INFO25) is a module of the EORTC QLQ-C30 that can be used in clinical practice and research to evaluate information-based interventions and programs.11 It contains four multi-item scales (information about the disease, medical tests, treatments, and other services) and eight single items (places of care, self-help to get well, information channels, and information satisfaction and usefulness). INFO25 also includes two open questions related to the answers of questions 53 and 54, allowing patients to write about topics of their choice. Overall, INFO25 comprises 25 questions on a four-point Likert scale response format, except for dichotomous (yes/no) questions 50, 51, 53, and 54.
The HADS consists of two subscales: one measuring anxiety, with seven items, and the other measuring depression, with seven items scored separately. Each item was answered by the patient on a four-point (0–3) response scale. Thus, possible scores ranged from 0 to 21 for anxiety and depression. The HADS manual indicates that a score between 0 and 7 is “normal”; between 8 and 10, “borderline”; between 11 and 14, “moderate”; and between 15 and 21, “severe”.12
Sociodemographic and clinical data including sex, age, marital status, education level, profession, nationality, Eastern Cooperative Oncology Group (ECOG) performance status (PS), disease extent, line of treatment and if the patient was included in a clinical trial was collected by direct questioning of patients.
The primary outcome was an assessment of disease knowledge, QoL, and expectations among breast cancer patients under active treatment at a daily hospital of a comprehensive cancer centre.
The secondary outcome was an assessment of QoL and an exploration of the association between less knowledge of the disease and higher levels of anxiety and depression.
All statistical analyses were performed using IBM SPSS 23.0 program (Statistical Package for the Social Sciences) (IBM SPSS Statistics, RRID:SCR_016479) for Windows.
Descriptive and analytical statistics were used for data analysis. Absolute and percentage frequencies were determined according to the characteristics of the variables under study (measures of central tendency or location: mean, mode, and median; measures of variability or dispersion: coefficient of variation and standard deviation; and measures of asymmetry and flatness).
Regarding inferential statistics, non-parametric statistics were used because the requirements for the use of parametric statistics were not met. Thus, the Kolmogorov-Smirnov test was used to study the normality of the distribution of variables, and the Levene test was used to study the homogeneity of the variances. For non-parametric statistics, Spearman's correlation was used.
In the statistical analysis, the following significance values were used: p<0.05, statistically significant difference; p≥0.05, non-significant statistical difference.
Sample size was estimated using G*Power software version 3.1 (G*Power, RRID:SCR_013726).13 The minimum sample size required was 159 patients to have statistical power of 0.95 with a significance value of 0.05.
The sex distribution was heterogeneous, 98.4% were women and 1.6% were men. The median age at diagnosis was 54 (range 25-84) years, and the majority of patients (28.7%) were aged between 51 and 60 years, followed by 27.1% aged between 41 and 50 years. Regarding marital status, the majority were married (66.5%). The level of education had a heterogeneous distribution: 49.5% had high school or 12 years of education; 27.1% had primary school education, and 23.4% had a university degree. Regarding occupation, using the Portuguese classification of occupations, the majority of patients (23.4%) were workers in personal and protective services, followed by 19.1% skilled industry workers, and 17.6% specialists in intellectual and scientific activities (Table 114).
ECOG PS was applied to all patients and 99.5% had no limitations, with an ECOG score of 0. Most patients had early breast cancer (72.3%); 38.3% received adjuvant treatment, and 34% received neoadjuvant treatment. Advanced disease was identified in 27.7% of the patients (14.9% received first-line palliative chemotherapy and 8% received third-line palliative chemotherapy).
Clinical data are summarised in Table 2.
The EORTC QLQ-30 assessed QoL with an average global value obtained at 58.95±18.13 (for a maximum of 100).
The analysis by functional scales showed that the “cognitive” subscale had the highest mean value (χ=77.22±22.53), followed by “social” (χ=76.86±25.41) and “physical” (χ=75.67±17.24) subscales. With the exception of the “emotional” (χ=68.53±23.78) subscale, the mean values obtained were higher than 70.
Regarding symptom scales (0% corresponds to the absence of symptoms and 100% to the presence of elevated symptoms), all mean values verified were much lower than the midpoint of the questionnaire (50). “Fatigue” was the most reported symptom by patients (χ=35.70±22.39), followed by “insomnia” (χ=34.22±30.14), “financial difficulties” (χ=33.33±35.15), and “pain” (χ=26.51±23.80). For other symptoms, such as “nausea and vomiting”, “dyspnoea”, and diarrhoea”, the mean values were less than 10 (Table 3).
In order to evaluate the information received by patients and their satisfaction, the EORTC QLQ-INFO25 questionnaire was used.
The global score was lower than the cut-line (χ=47.96±14.40) with the average values oscillating between a minimum of 16.67 and a maximum of 80.79. Patients under study considered the information received about their disease insufficient, and they were negatively satisfied with it.
Regarding “information related to the disease”, the average values were greater than 50 only in the following subscales: “medical examination” (χ=58.98±24.02), “information about treatments” (χ=56.09±22.02), and “written information” (χ=55.85±49.79). It should be noted that in relation to “other services” (home services, physiotherapy, occupational therapy, psychology, etc.), the average value found was 10.55±12.99 and information in digital support was 4.25±20.24. As for the dimension of “satisfaction,” the average value of “satisfaction with the information received” was 53.55±23.99, and patients were aware that the information received was useful to them (67.38±23.87). Patients did not wish to receive less information about their disease (99.47±7.29) (Table 4).
The INFO25 questionnaire contained two open questions that the patients were asked to answer. Patients could freely list topics they wanted to receive more information about (question number 53b in the case of an affirmative response to 53a) or less information about (question number 54b following an affirmative response to 54a). In our study, majority of the patients (53.7%) wanted to receive more information about their disease.
The HADS was applied to all patients to detect the presence/absence and severity of anxiety/depression.
Table 5 shows that the mean value observed was higher for depression (χ=8.07±3.92) compared to anxiety (χ=6.01±3.76), with a maximum of 21.
HADS | χ | SD | Minimum observed | Maximum observed |
---|---|---|---|---|
Depression | 8.07 | 3.92 | 0 | 21 |
Anxiety | 6.01 | 3.76 | 0 | 18 |
Table 6 represents the distribution of patients according to the reference values of the HADS score (score between 0 and 7 is “normal”, between 8 and 10 is “borderline”, between 11 and 14 is “moderate”, and between 15 and 21 is “severe”). It shows that majority (64.7%) of patients had “normal” levels of anxiety, 44.9% were not depressed, and 32.1% had a clinical picture of borderline depression (Table 5 and Table 6).
The relationship between levels of anxiety and depression manifested by patients and their perception of life (QoL) and health status (Spearman’s correlation) showed that the correlation was negative and significant (p<0.000). As patients’ functionality (QoL) decreases, they tend to show higher levels of depression and anxiety.
In the “symptoms scale”, the correlation was positive in most subscales and significant in relation to depression and anxiety (except for the “nausea and vomiting”/“anxiety” subscale). As the intensity of symptoms increases, patients tend to show higher levels of anxiety and depression (Table 7).
According to the information received by patients and its possible relation to higher levels of anxiety and depression, in “Information related to the disease”, the correlation was negative and statistically significant in relation to depression and anxiety in the following subscales: “medical tests”, “treatments”, “other services”, “self-help to get well”, and “places of care” (only anxiety).
Taking “satisfaction” into account, the correlation was negative and significant in relation to anxiety and depression, in the following subscales: “satisfaction with the information received” and “overall, the information was useful.” Globally, as satisfaction with information about their disease decreased, patients tended to show higher levels of anxiety (p<0.001) and depression (p<0.003) (Table 8).
Breast cancer patients represent a large proportion of the patients at our institution’s day hospital. Its representativeness allowed us to draw conclusions about this patient population.
The patients in the study had a positive perception of their overall health status and QoL. When evaluating several dimensions of QoL, patients reported higher levels of cognitive, physical, and social functionality.
Most patients had normal levels of anxiety, and almost one-half were not depressed. However, almost one-third of patients had a clinical picture of borderline depression. Early intervention in this particular area may be crucial.
Regarding the INFO25 questionnaire, patients under study considered the information received about their disease insufficient, and they were negatively satisfied. Patients reported higher levels of satisfaction with respect to information regarding medical examinations, treatments, and written information. However, it should be noted that in relation to “other services” (home services, physiotherapy, occupational therapy, psychology, etc.) and information in digital support, patients reported receiving insufficient information. The patients were aware that the information was useful to them; however, they did not wish to have received less information about their disease. By contrast, they would like to receive more information. Most would like to know more about the evolution of their disease and the treatment options.
Regarding the perception of the information received, QoL, and levels of anxiety and depression, when patients’ functionality decreases, they tend to show higher levels of depression and anxiety. The same could be said regarding satisfaction with information about their disease (patients tend to show higher levels of anxiety and depression when satisfaction decreases). Thus, patients want to know more about their illness, which can affect the emotional quality felt by them.
It is therefore important to improve doctor-patient communication, since by intervening in this area, we can allay patients’ anxiety and consequently improve their QoL. It is also necessary to create dedicated spaces for information and clinical clarification, with regular assessment of patients’ perceptions. The information provided must be reinforced through written support, brochures, or digital support.
This study involved only one institution; therefore, the findings may not be generalisable to other institutions. Only patients with breast cancer were included in the study. We are yet to determine if these findings apply to other patient groups as well. Also, other factors associated with anxiety and depression, rather than disease knowledge, were not analysed. Their influence on the overall anxiety and depression scores was not determined. Some of these questions can be answered in future.
Patients under study considered the information received about their disease insufficient, and they were not satisfied with that. There is a relationship between the level of satisfaction with the information received and the level of anxiety and depression experienced by patients. Thus, as satisfaction decreases, patients tend to show higher levels of anxiety and depression. The same can be said about the perception of QoL/symptom control. As symptom control decreases, patients tend to show higher levels of anxiety and depression.
Therefore, patient-physician communication is an area that requires urgent attention. Early intervention by a psychologist/psychiatrist is key for this group of patients.
Dryad: ‘Breast cancer patients’ knowledge. Results of EORTC QLQ30, QLQ-INFO25 and HADS’. https://doi.org/10.5061/dryad.05qfttf4t.14
Data are available under the terms of the Creative Commons Zero “No rights reserved” data waiver (CC0 1.0 Public domain dedication).
We would like to thank João Reis (JR), trained in the area of statistics, for helping with the statistical procedures involved in the manuscript.
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Is the work clearly and accurately presented and does it cite the current literature?
Yes
Is the study design appropriate and is the work technically sound?
Partly
Are sufficient details of methods and analysis provided to allow replication by others?
Partly
If applicable, is the statistical analysis and its interpretation appropriate?
Yes
Are all the source data underlying the results available to ensure full reproducibility?
Yes
Are the conclusions drawn adequately supported by the results?
Yes
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: adjuvant chemotherapy of breast cancer, resilience and quality of life in breast cancer, digital tools for cancer patients
Alongside their report, reviewers assign a status to the article:
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Version 1 02 Sep 22 |
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