Abstract
Disparities exist in breast cancer knowledge and education, which tend to influence symptom interpretation and decision to seek screening/care. The present project describes a cohort of women's experiences, knowledge and health behavior prior to and after a diagnosis of breast cancer. It also studies how knowledge and demographic factors are associated with level of involvement participants had in the treatment of their breast cancer. Women > 18 years who have being diagnosed and treated for breast cancer within 10 years were recruited in Pittsburgh, PA, through the Healthy People Cohort Registry, a data base of volunteers from the community, and Brooklyn, NY through the American Cancer Society breast cancer survivor database. Subsequent to institutional ethics approvals, a questionnaire was administered by mail, and through an electronic interactive format.
The study included 124 breast cancer survivors, one quarter of whom were of African ancestry. Roughly half of women indicated that their overall knowledge of breast cancer was limited before diagnosis; no significant association between overall knowledge before diagnosis and stage at diagnosis or an active role of the patient in treatment choices was observed. Two-third of women reported using personal research on internet, books and other media to increase knowledge on breast cancer after diagnosis; the improvement of knowledge was associated with an active role in therapy choice. White women's self report of breast cancer knowledge prior to diagnosis was higher than that of women of African origin (p=0.03); the latter experienced more delays in getting results about the diagnosis (p=0.002), in starting treatment (p=0.03), and in having treatment available at local facilities (p=0.007) than White women. White women were more likely to improve their knowledge through their own research (p=0.08) and through the contribution of their physician (p=0.06) than women of African origin.
There is still a need for addressing breast cancer knowledge among black women, and that improvement in physician emotional support and in their contribution to the patient's knowledge is necessary. These efforts may have a positive impact on breast cancer knowledge among black women in the United States.
Keywords: cancer prevention, cancer education, mammography, cancer therapy, African ancestry
Introduction
Although breast cancer incidence and mortality has declined over time, there are persistent disparities in both incidence and mortality among racial minorities, underserved and economically disadvantaged groups [1]. Furthermore, women within these groups have higher incidences of risk factors and are less likely to be screened for cancer. In addition to limited resources, disease knowledge and educational background, which tend to influence symptom interpretation and decision to seek screening/care, are often limited in these population [2]. Health behavior theories, such as the Theory of Reasoned Action and the subsequent Theory of Planned Behavior [3-5] show promise in their applicability to the role of knowledge, attitudes, and self-efficacy in explaining African American women's engagement in breast cancer screening and treatment [6]. Previous studies have linked screening practices to knowledge and attitudes towards prevention, age, and socioeconomic status [7]. Lower screening rates, erratic follow-up, and differences in tumor pathology all impact on the stage of cancer at initial diagnosis and subsequent medical treatment [8]. Breast cancer patients have shown that informational needs are primary for making appropriate decisions on their medical treatment [9]. A recent study showed that breast and colorectal cancer survivors had limited knowledge on the details of their diagnosis and cancer treatment course [10], and this could affect their follow-up and the continuity of appropriate care. It is conceivable that an active involvement in care would result in a better understanding on the medical procedures and therapeutic schemes, which in turn would lead to better cancer outcomes [11].
The intent of this research project is to describe a cohort of women's experiences, knowledge and health behavior prior to and after a diagnosis of breast cancer. In addition, we aim to study how knowledge and demographic factors may be associated with level of involvement participants had in the treatment of their breast cancer, with a particular emphasis on racial and socioeconomic differences. This research study will help to define the interventions needed to promote breast cancer awareness, increase knowledge of risk factors and promote screening, and to encourage proactive behavior as it applies to the process of breast cancer diagnosis and treatment among low-income, ethnic minority women, in particular.
Methods
Study population: Women over the age of 18 who are currently receiving care for, or who, within the past 10 years, have being diagnosed and treated for breast cancer were recruited from the cities of Pittsburgh, PA, and Brooklyn, NY; both cities with direct access to major medical centers and any outreach measures directed at the community by these centers. In Brooklyn, women were identified through the American Cancer Society breast cancer survivor database and the cancer survivor support groups at Downstate Medical Center. In Pittsburgh, women were identified through the Healthy People Cohort Registry, a data base of volunteers recruited through community housing, health fairs, and other public events.
Data collection: Subsequent to institutional ethics approvals at at both the University of Pittsburgh and Downstate Medical Center, a questionnaire was administered by mail, and was converted into an electronic interactive format housed on the African-Caribbean Cancer Consortium's website (www.ac3online.org). No restriction criteria for participation was imposed, and as all the women included in each registry were invited to participate. Each woman was mailed either a concealed flyer or postcard inviting them to take part in the study by accessing the questionnaire on line, or requesting that a hard copy be mailed to them which they would then return anonymously. Each piece of mail had a randomly generated and untracked unique key code attached to it. The purpose of the code was to help tracking where each participant completing the survey was geographically located, and as well ensure that each woman who accessed the website to respond to the questionnaire only did so once.
Statistical Analysis
Descriptive statistics of the study population were calculated to assess pre-diagnosis health status, physical activity, diet, socioeconomic status, educational background, lifestyle, reproductive history, family history, and patients' interpretation of symptoms, decision to seek care, their involvement in and interpretation of the care they received, among other parameters. A change in overall knowledge of breast cancer was measured by comparing knowledge after diagnosis – knowledge before diagnosis through a paired-t test. For some indicators of breast cancer knowledge prior to diagnosis and overall experience during diagnosis and treatment, a comparison between white women and women of African origin was performed by a chi-square test. A multivariate analysis was conducted to asses the independent predictors of the patient's active role in her breast cancer treatment options. The SAS statistical package was used to perform all statistical analyses.
Results
The study included 124 breast cancer survivors, whose characteristics are presented in Table 1; 26% of the women defined themselves as of African origin, and roughly half had a breast cancer diagnosis within 5 years from the current interview. Table 2 presents descriptive information regarding the factors that directly or indirectly indicate breast cancer knowledge prior to diagnosis. Most of the women had a yearly mammogram and conducted a breast self-exam every few months. Half of the women reported healthy habits, such as consumption of the recommended quantity of daily fruit and vegetables, the avoidance of fried foods, and an adequate level physical activity. Despite that almost all women reported knowing of the existence of breast cancer prior to diagnosis, roughly half of them indicated that the overall knowledge of breast cancer as a disease was limited before diagnosis; no significant association between overall knowledge before diagnosis and stage at diagnosis was observed.
Table 1. Characteristics of the study population of breast cancer survivors (n =124).
| RACE | N (%) |
| African origin | 31 (26.27) |
| White | 77 (65.25) |
| Latino | 7 (5.93) |
| Native /Pacific islander/Asian | 3 (2.54) |
| AGE (years) | |
| < 35 | 12 (10) |
| 36-65 | 69 (57.5) |
| >65 | 39 (32.5) |
| PLACE OF BIRTH | |
| US/outside | 98 (80.99)/23 (19.01) |
| EDUCATION | |
| < High School | 40 (33.06) |
| Technical school | 18 (14.88) |
| College | 44 (36.36) |
| Graduate school | 19 (15.70) |
| CURRENTLY EMPLOYED | |
| No/yes | 69 (58.47)/49 (41.53) |
| SMOKING HISTORY | |
| Never/ever | 103 (84.43)/19 (15.57) |
| ALCOHOL | |
| Never | 60 (52.63) |
| Yes currently | 34 (29.82) |
| Yes in the past | 20 (17.54) |
| AGE AT MENARCHE (years) | |
| < 11 | 25 (21.19) |
| 12 | 27 (22.88) |
| 13-14 | 48 (40.67) |
| >15 | 18 (15.26) |
| EVER BEING PREGNANT | |
| No/yes | 24 (20.34)/94 (79.66) |
| PAST USE OF ORAL CONTRACEPTIVES | |
| No/yes | 51 (43.59)/66 (56.41) |
| YEARS SINCE BC DIAGNOSIS | |
| 1-2 | 25 (20.66) |
| 2-5 | 41 (33.88) |
| 5-10 | 35 (28.93) |
| >10 | 20 (16.53) |
| Previous breast biopsy for benign condition | |
| Yes/no | 84 (70.59)/35 (29.41) |
| FAMILY HISTORY FOR BC | |
| No/yes | 70 (59.32)/48 (40.68) |
| Weight (pounds) | Mean + SD (range) |
| 160.8 (38.0) 105- 294 |
Table 2. Breast cancer risk factors and knowledge before diagnosis.
| Had a prior mammography | N (%) |
| No/yes | 12 (10.0)/ 108 (90.0) |
| Mammography frequency | |
| every year/ Every 2 years/ Sometimes | 86 (87.8)/ 7 (7.1)/ 5 (5.1) |
| Reporting a healthy weight at time of diagnosis | |
| No/yes | 37 (31.1)/ 82 (68.9) |
| Had dense breasts at mammography | |
| No/yes/Don't Know | 51 (44.7)/ 58 (50.9)/ 5 (4.4) |
| Consumption of recommended fruit and vegetables | |
| No/yes | 65 (54.6)/ 54 (45.4) |
| Consumption of fried food (times x week) | |
| 1-2 | 74 (66.1) |
| >2-5 | 30 (26.8) |
| 6-7 | 6(5.4) |
| >7 | 2 (1.8) |
| Physical activity (hr x week) | |
| None | 7 (6.0) |
| <1 | 14 (12.0) |
| 1-3 | 54 (46.1) |
| 3-7 | 32 (27.4) |
| >7 | 10 (8.5) |
| Breast self exam | |
| No/yes | 9 (9.4)/ 90 (90.6) |
| Frequency of self exam (among yes, n=90) | |
| Once a month | 41 (45.6) |
| Every few months | 29 (32.2) |
| Once a year | 2 (2.2) |
| Only during doctor's visit | 16 (17.8) |
| Knowledge of breast cancer as disease | |
| No/yes | 8 (6.6)/ 114 (93.4) |
| Overall breast cancer knowledge | |
| Non existent | 2 (1.7) |
| Very limited | 24 (20.3) |
| Somewhat knowledgeable | 43 (36.4) |
| Moderately well informed | 29 (24.6) |
| Extremely well informed | 20 (17.0) |
| Knowledge about treatment | |
| Non existent | 8 (6.7) |
| Very limited | 33 (27.7) |
| Somewhat knowledgeable | 41 (34.5) |
| Moderately well informed | 25 (21.0) |
| Extremely well informed | 12 (10.1) |
There was an improvement in overall knowledge after diagnosis (p=0.07 for paired comparison) of knowledge after – knowledge before diagnosis).
Overall experience during diagnosis and treatment (Table 3): Two-thirds of breast cancer patients waited less than a week to get results about their diagnosis; one-third of them asked for a second opinion before starting the course of treatment, despite the fact that an overwhelming percentage judged their health care provider to be knowledgeable about their disease and compassionate. The treatment was started within a few weeks for most of patients, who rated the experience above average in 70% of cases; patients participated in the decisional process of their treatment course in 79% of cases, however there was no significant association between previous knowledge about breast cancer and an active role of the patient in treatment choices. At multivariate analyses, race, previous knowledge of breast cancer, education, family history of breast cancer, frequency of breast self exam, and healthy diet (as measured by number of daily servings of fruit and vegetables) had no significant association with an active role of the patient in treatment choice. Two-third of women reported using personal research to increase knowledge on breast cancer after diagnosis. The improvement of knowledge obtained through personal research on internet, books and other media was associated with an active role in therapy choice.
Table 3. Overall experience after breast cancer diagnosis and treatment.
| Testing at Local Laboratory | N (%) | |
| Yes | 69 (71.9) | |
| No | 4 (4.2) | |
| Don't know | 23 (23.9) | |
| Waiting time to get results | ||
| < 1 week | 63 (67.7) | |
| 1–2 weeks | 27 (29.0) | |
| >1 month | 3 (3.3) | |
| Asked for a second opinion | ||
| No/yes | 63 (66.3)/32 (33.7) | |
| Knowledge of the person who delivered the news | ||
| Non existent | 1 (1.1) | |
| Poor | 5 (5.3) | |
| Somewhat knowledgeable | 4 (4.2) | |
| Moderately knowledgeable | 12 (12.6) | |
| Extremely knowledgeable | 73 (76.8) | |
| Compassion the person delivering the news | ||
| Don't remember | 1 (1.0) | |
| Lacked any compassion | 14 (14.4) | |
| Somewhat compassionate | 9 (9.3) | |
| Very compassionate | 35 (36.1) | |
| Above and beyond the call of duty | 38 (39.2) | |
| Received counseling | ||
| No/yes | 63 (67.0)/31 (33.0) | |
| Availability of treatment at local facility | ||
| Did not know they treated cancer | 21 (23.4) | |
| Treatment was non existent | 3 (3.3) | |
| Treatment was very limited | 2 (2.2) | |
| Treatment was moderately specialized | 36 (40.0) | |
| Treatment was highly specialized | 28 (31.1) | |
| Treatment delay | ||
| Few days | 32 (33.3) | |
| Few weeks | 45 (46.9) | |
| Few months | 19 (19.8) | |
| Quality of experience during treatment | ||
| Extremely poor | 3 (3.2) | |
| Poor | 5 (5.3) | |
| Average | 23 (24.2) | |
| Above average | 64 (67.4) | |
| Exceptional | 3 (3.2) | |
| Patient's role in deciding treatment course | ||
| None | 6 (6.2) | |
| Very little | 13 (13.4) | |
| Moderate | 40 (41.2) | |
| Actively involved | 37 (38.2) | |
| Availability of support services | ||
| Never looked into it | 34 (36.2) | |
| Non existent | 6 (6.4) | |
| Very limited | 4 (4.3) | |
| Moderate | 24 (25.5) | |
| Abundant | 26 (27.6) | |
| Role of physician in pointing out support services | ||
| Did not help at all | 28 (30.8) | |
| Limited | 25 (27.5) | |
| Average | 19 (20.9) | |
| Above average | 12 (13.2) | |
| Exceptional | 7 (7.7) | |
| Use of support services | ||
| No/yes | 46 (54.1)/39 (45.9) | |
| Satisfaction with outcome (women no longer treated) | ||
| No/Yes | 10 (13.2)/66 (86.8) | |
| Physician contribution to improving knowledge | ||
| Did not/limited | 11 (9.4) | |
| Average | 23 (19.7) | |
| Above average | 40 (34.2) | |
| Exceptional | 43 (36.7) | |
| Personal research contribution to improving knowledge | ||
| Did not/limited | 16 (13.4) | |
| Average | 34 (28.6) | |
| Above average | 47 (39.5) | |
| Exceptional | 22 (18.5) | |
| Role of religion in recovery | ||
| No role | 17 (14.5) | |
| Very minimal | 10 (8.6) | |
| Moderate | 24 (20.5) | |
| Major | 66 (56.4) | |
Patients acknowledged the availability of support services in roughly half of the cases, but only used them in less than half of the cases. Overall, women were satisfied with the outcome of their disease (87%).
Stratified analysis according to ethnicity (table 4): There was no significant difference between White women and women of African origin in age and education level; similarly, a comparison between knowledge about breast cancer prevention and risk factors showed no significant differences with race. However, White women's self report of breast cancer knowledge prior to diagnosis was higher than that of women of African origin (p=0.03). Women of African origin experienced more delays in getting results about the diagnosis (p=0.002), in starting treatment (p=0.03), and in having treatment available at local facilities (p=0.007) than White women. White women were more likely to improve their knowledge through their own research (p=0.08) and through the contribution of their physician (p=0.06) than women of African origin.
Table 4. comparison of selected variables between White women and women of African origin.
| VARIABLE | African origin (%) | White (%) | P value |
| Prior mammography (no/yes) | 13.8/86.2 | 6.6/93.4 | 0.4 |
| Mammography every year/ Every 2 years/ Sometimes | 69.6,17.4,13.0 | 93.7, 3.1, 3.2 | 0.02 |
| Had dense breasts at mammography (no/yes) | 58.6/41.4 | 39.4/60.6 | 0.1 |
| Previous breast biopsy for benign condition (no/yes) | 82.8/17.2 | 66.7/33.3 | 0.1 |
| Previous consumption of recommended fruit and vegetables | 62.1/37.9 | 52.0/48.0 | 0.4 |
| Prior self-exam | 11.8/88.2 | 10.1/89.9 | 1 |
| Prior breast cancer knowledge (limited/moderate/high) | 25.0/53.6/21.4 | 20.0/32.0/ 48.0 | 0.03 |
| Prior knowledge about treatment (limited/moderate/high) | 46.4/32.1/21.4 | 28.9/38.2/ 32.9 | 0.1 |
| Waiting time to get results (<1wk; 1-2wk; >1 month) | 41.2/47.1/11.8 | 77.3/21.2/1.5 | 0.002 |
| Treatment availability at local facilities (no/yes) | 57.1/42.9 | 19.7/80.3 | 0.007 |
| Delay in treatment (days/weeks/months) | 17.6/41.2/41.2 | 37.7/49.3/13.0 | 0.03 |
| Active role in treatment (no/yes) | 23.5/76.5 | 17.1/82.9 | 0.5 |
| Compassion of the person delivering the news (lacking, minimal, high, beyond call of duty) | 29.4, 11.8, 35.3, 23.5 | 12.9, 8.6,32.9, 45.7 | 0.05 |
| Improved BC knowledge through own research (no/yes) | 56.7/43.3 | 36.4/63.6 | 0.08 |
| Physician contribution to improving knowledge (no/yes) | 23.3/76.7 | 9.1/90.9 | 0.06 |
| Role of religion in recovery (no/yes) | 16.7/83.3 | 28.6/71.4 | 0.2 |
Discussion
With this study we examined knowledge and prevention practices among breast cancer survivors, as well as how knowledge impacted their involvement with medical treatment. Knowledge of breast cancer, screening with regular mammograms and breast self-exams are expected to be associated with earlier decision to seek medical care and earlier stage of breast cancer at initial diagnosis. Higher knowledge will also be associated with more involvement in the treatment process and in better outcomes [12]. Breast cancer survivors in this study reported limited breast cancer knowledge in half of the cases; knowledge was not associated with stage at diagnosis or in an active role in the treatment decision. Previous studies have indicated that breast cancer knowledge is greater in women who access the Internet and read health pamphlets and for those women who discuss a greater number of breast cancer topics with their physician [13]. Although several factors were analyzed as predictors of women's active role in treatment, none of them were found to be statistically significant in our study. Our study indicates that overall breast cancer knowledge was better among white than black women, despite the fact that the two groups were similar in mammography rates, and in the distribution of behavioral risk factors. African descended populations have traditionally faced a dilemma with regard to the dissemination of information, which has neither been well managed nor even as well received when compared to other populations [9, 10]. One could possibly attribute this to cultural and educational differences across populations.
Other interesting differences between black and white women were the fact that compassion of the health professional was rated lower by black versus white women, and so was the contribution of the physician to increasing the woman's knowledge on breast cancer. A study among low-income minorities showed a significant association of patient self-efficacy and physician emotional support with breast cancer knowledge; physician emotional support appeared to be more important than physician informational support [12]. In our study, physician contribution to improving knowledge was not statistically significant for either whites or blacks women; providing appropriate emotional support during patient education about breast cancer may increase informational uptake in minorities, but more studies are needed on this subject.
Spiritual beliefs were important to all participants and did seem to help them cope with and reframe their illness experiences. The patient–provider relationship was the most notable factor that influenced treatment decisions. Women with early stage breast cancer and cancer physicians shared some views of how physicians involve patients in treatment decision making, although there were important differences. Physicians may underestimate the importance that women place on understanding the rationale for their involvement in treatment decision making and on feeling comfortable during the consultation [14].
Another key findings is that the treatment modalities seem to differ with race: black women experience more delays in starting the treatment, and less frequent availability of treatment at their local health facility: this may indicate that financial and geographical barriers may prevent timely treatment among minorities. These findings underline the importance of addressing these barriers in order to improve both screening and disease outcome.
One limitation of this study is that the assessment of breast cancer knowledge prior to diagnosis may be subject to recall bias. Another challenge that must be addressed by future studies is the fact that black populations comprise more than one ethnic subgroup, with potential heterogeneity in cultural and religious beliefs; this requires outreach and dissemination of information that is culturally sensitive to these needs.
Our overall findings suggest that there is still a need for addressing breast cancer knowledge among black women, and that improvement in physician emotional support and in their contribution to the patient's knowledge is necessary. These efforts may have a positive impact on breast cancer knowledge among black women in the United States.
Acknowledgments
R13 CA130596 to CR; we thank Carol Becker, Director Patient & Family Services American Cancer Society, Brooklyn office who facilitated the mailing of the invitations to participate in the study. We are grateful to dr Rebecca Schwartz for reading and commenting the manuscript prior to submission.
Footnotes
The authors declare that they have no competing interests
GRJ, SE designed and administered the questionnaires; LR participated in patients' recruitment and manuscript drafting. ET participated in the design of the study and performed the statistical analysis. CR conceived the study, and participated in its design and coordination and helped to draft the manuscript.
All authors read and approved the final manuscript.
Contributor Information
Emanuela Taioli, Email: etaioli@nshs.edu.
Dr Linda Robertson, Email: robertsonlk@upmc.edu.
Stacy Eckstein, Email: ste11@pitt.edu.
Camille Ragin, Email: camille.ragin@fccc.edu.
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