without disabilities in Germany

Disability and Health Journal xxx (xxxx) xxx

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Original Article

Health disparities among breast cancer patients with/without disabilities in Germany Sophie E. Groß a, b, *, Holger Pfaff a, Michael Swora a, Lena Ansmann a, c, Ute-Susann Albert d, e, Anke Groß-Kunkel f a

Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR), Faculty of Human Sciences and Faculty of Medicine, University of Cologne, Eupener Straße 129, 50933, Cologne, Germany Rhineland State Council - Institute of Health Care Research e LVR-IVF, Cologne, Germany, Wilhem-Griesinger Str. 23, 51109, Cologne, Germany c Department of Health Services Research, Faculty of Medicine and Health Sciences, Carl von Ossietzky University Oldenburg, Ammerlaender Heerstrasse 140, 26129, Oldenburg, Germany d €nchebergstr. 41-43, 34125, Department of Gynecology and Obstetrics, Head of Senology and Conservative Gyneco-Oncology, Klinikum Kassel GmbH, Mo Kassel, Germany e C/o AWMF-Institute for Medical Knowledge Management, Faculty of Medicine, Germany, Philipps-University, Karl-von-Frisch-Str.1, 35043, Marburg, Germany f Department of Special Education and Rehabilitation, Faculty of Human Sciences, University of Cologne, Germany, Klosterstrasse 79b, 50931, Cologne, Germany b

a r t i c l e i n f o

a b s t r a c t

Article history: Received 30 January 2019 Received in revised form 13 November 2019 Accepted 18 November 2019

Background: Prevalence and incidence of cancer are increasing in people with disability. Nevertheless, little is known about cancer care for people with disabilities. Objective: The goal of this study was to examine the quality of care of breast cancer patients with preexisting disabilities regarding diagnosis and type of breast surgery in Germany. Methods: Within the framework of quality assurance of breast cancer centers, a patient survey was conducted by the University of Cologne. Survey data from 4626 newly-diagnosed breast cancer patients treated in 86 hospitals were analyzed using multilevel modeling. Data about socio-demographics, disability specific data as well as data about diagnosis and type of surgery were collected. Results: About 13% (n ¼ 568) of the patients indicated they had a pre-existing disability prior to their breast cancer. The majority of patients with disabilities have physical impairments (PI n ¼ 385; 68.0%) or sensory impairments (SI n ¼ 131; 23.1%). 16.7% of the patients indicated they have a mental illness (MI n ¼ 95; 16.7%) and 8 patients indicated to have an intellectual disability (ID n ¼ 8; 1.4%). Patients with PI and SI are less often diagnosed for cancer through a mammography screening (OR PI ¼ 0.70; p < 0.05; OR SI ¼ 0.58; p < 0.05). Patients with PI are less likely to receive breast conserving treatment (OR ¼ 0.58; p < 0.00) and more likely to have a mastectomy without reconstruction (OR ¼ 1.96; p < 0.00) compared to patients without disabilities. Conclusion: Our data show that there are differences in the frequency of cancer diagnosis through mammography screening and in surgery applied between breast cancer patients with and without disabilities. © 2019 Elsevier Inc. All rights reserved.

Keywords: Disability Breast cancer Health care Health services research Inequalities

Introduction

* Corresponding author. Rhineland State Council - Institute of Health Care Research e LVR-IVF, Cologne, Germany, Wilhem-Griesinger Str. 23, 51109, Cologne, Germany. E-mail addresses: [email protected] (S.E. Groß), [email protected] (H. Pfaff), [email protected] (M. Swora), lena.ansmann@uni-oldenburg. de (L. Ansmann), [email protected] (U.-S. Albert), [email protected] (A. Groß-Kunkel).

Epidemiology and health care for patients with breast cancer and disabilities As life expectancy is increasing in both the general population and in people with disabilities, the World Health Organization (WHO) reports that age-related diseases will increase not only in

https://doi.org/10.1016/j.dhjo.2019.100873 1936-6574/© 2019 Elsevier Inc. All rights reserved.

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873

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S.E. Groß et al. / Disability and Health Journal xxx (xxxx) xxx

the general population but also among people with disabilities.1,2 Hence, the WHO expects a significant increase in cancer among people with and without disabilities over the next decades. We know that increasing life expectancy, prevalence and incidence of age-related diseases such as certain cancers are associated.3 In 2012, there were more than 14 million people diagnosed with cancer worldwide and 8 million cancer-related deaths.3 In Germany, about 253,000 men and 230,000 women were diagnosed with cancer in 2013.4 Among cancers, breast cancer is the most common form of cancer in women worldwide and in Germany.4,5 Further, in Germany, the number of people with disabilities has risen from around 11 million in 2005 to around 12.78 million in 2013.6 Nevertheless, the needs of people with disabilities are rarely the focus of health services research. International studies show that patients with disabilities encounter structural, communicative, social-emotional and institutional barriers to their health care.7e11 According to Article 1 of the UN Convention on the Rights of Persons with Disabilities, people with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, can prevent them from participating fully, effectively and equally in society.12 In the present study, people with a disability proven by a severely disabled person's identity card, were considered as participants (disability-identity card ¼ card holder is a person with a disability and the severity is ranked according the German disability severity ranking system).6 Thus, the study focuses on people who were diagnosed with breast cancer according to the International Statistical Classification of Diseases and Related Health Problems (ICD) and had a disability prior to breast cancer according to the International Classification of Functioning, Disability and Health (ICF).13,14 For the present study, this means that it is not the consequences of breast cancer that are to be considered, but rather the interactions between a pre-existing disability according to the ICF and the care of breast cancer according to the ICD-10-CM C50.13 The risk of developing breast cancer during life is about 13% among women in the general population and about 0.1% for men.5 In Germany, about 45% of new breast cancer cases occur between the ages of 50e69, 18% up to the age of 50 and 37% at the age of 70.3 For people with disabilities, there are no specific epidemiological measures for the risk of developing breast cancer in Germany. However, it can be assumed that the risk of developing breast cancer among people with disabilities also increases due to increasing life expectancy.1e3 In addition, people with disabilities have an increased risk of health issues in several areas. They are in poorer health than the general population, and have poorer health care.15,16 Lifestyle factors such as nicotine, alcohol addiction, obesity and reduced physical activity contribute to the risk of cancer and these risk factors are increased in people with disabilities.15,16 Contextual or systemic factors may play a role in the early detection and treatment of cancer among people with disabilities: There is evidence that people with disabilities are diagnosed at a higher stage of cancer and receive different treatment than cancer patients without disabilities.15,16 Studies also show that people with disabilities utilize and receive fewer preventive measures.15 International data on cancer incidence in people with disabilities are inconsistent. Some studies report a higher risk of cancer, others a lower or equivalent risk compared to the general population.17e21 Therefore, more scientific studies and reliable data on the health care of cancer patients with disabilities are needed to improve their health care. State of the art International data on screening for breast cancer show that women with disabilities are less likely to obtain a mammography

screening.22,23 Barriers to participation in mammography screening are: a lack of understanding of the importance of mammography screening, feelings of anxiety and shame. These barriers are more pronounced among women with disabilities.2 In a qualitative study, participants with physical disabilities report considerable structural barriers accessing care facilities. Also, they report barriers during mammography, treatment and aftercare.24 Compared to women without disabilities, breast cancer patients with mental disorders and neurological diseases have significantly lower rates of breast conserving treatment, radiotherapy and axillary lymph node dissection.25 Ansmann et al. show care inequalities with regard to the applied surgical treatment method for breast cancer patients with and without physical disabilities. Breast cancer patients with a physical disability are significantly less likely to receive breast conserving surgery.26 McCarthy et al. (2006) show that women with disabilities are less likely to be treated within medical guidelines than women without disabilities after a breast conserving operation. However, differences in treatment cannot explain the differences in mortality in this study.25 The reasons for differences in care between breast cancer patients with and without disabilities remain unanswered in quantitative studies.25e27 International study results consistently suggest that mortality rates from breast cancer are higher among patients with disabilities.7,16,17,25,27e31 These higher mortality rates can have various causes, such as reduced use of preventive examinations,11,15 comorbidities15,16 and lower quality of care, for example in the form of radiation therapy and axillary lymph node dissection.25 The aim of the present study is to examine the quality of health care of breast cancer patients with pre-existing disabilities regarding diagnosis and type of surgery in Germany in comparison to patients without disabilities. Methods Within the framework of quality assurance for the certification of breast cancer centers, an annual survey of patients who are newly diagnosed with breast cancer and treated in one of the breast cancer centers in North Rhine-Westphalia (Germany) is conducted by the Institute of Medical Sociology, Health Services Research and Rehabilitation Science (IMVR) of the University of Cologne since 2006. In 2017, 86 breast cancer center hospitals in North RhineWestphalia, Germany (n ¼ 4626) were participating and disability specific data were collected for the first time in detail. The Cologne questionnaire for breast cancer (KPF-BK 3.0) was used for postal questioning, after the hospital stay. Data collected included personal and sociodemographic data of the patients, e.g. age, insurance status, education, the framework in which the cancer diagnosis was made and the type of surgery conducted. In 2017, disability specific questions such as structural barriers, and the existence of a disability, as proven by the existence of a severely disabled person's identity card were added to the questionnaire. Furthermore, data relating to primary tumor size, regional lymph node involvement, distant metastatic spread and the grading of the tumor were collected by the medical personal in the different centers. The patients who were newly diagnosed with at least one postoperative histological finding of breast cancer, and underwent surgery in a breast cancer center hospital between February 1st and July 31st 2017, were surveyed postoperatively. If a patient consented to participate in the study, the questionnaire was sent to the patient's home address. The study focuses on people who were diagnosed with breast cancer according to the ICD-10-CM C50 and had a disability prior to breast cancer according to the ICF.13,14 There are not any disabilities in this study that can be attributed to the breast cancer or its treatment. Disabilities were categorized by physical, intellectual,

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873

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visual, hearing, linguistic, learning disabilities and mental illness. Multiple answers were possible. Due to the small group sizes, the categories of visual and hearing disabilities were brought together for the purpose of analysis similar to a study by Shinden et al.7 Above, the group of breast cancer patients with an intellectual disability was considered within descriptive analysis, but was too small to be included in the multilevel analysis. In addition, the severity of the disability (mild, moderate, severe), the cause of the disability (by birth, accident, illness, etc.) and the existence of multiple disabilities were considered. Data on barrier free accessibility of treatment areas, medical equipment as well as participation in clinical studies were collected. The questions were developed on the basis of literature. Finally, sociodemographic characteristics and medical determinants, including the patient's age, educational level, health insurance status, stage of disease, cancer diagnosis through mammography, type of surgery as well as secondary diseases, were collected. Age was included since age varies within the categories of disability and secondary disease. In addition, age is an important factor that explains the diagnosis in the context of mammography screening. In Germany, mammography screening is covered for women between the ages of 50 and 69 years by the statutory health insurance fund for women as well as, for women with private health insurance.3 Health insurance status was collected by means of a dichotomous variable statutory health insurance versus private health insurance. In Germany, the statutory health insurance funds must accept anyone who wishes to be insured with them, regardless of their health status or financial performance. Usually high earners in good health are covered by private health insurance.32 About 10% of the German population are privately insured.33 The majority of the population (about 90%) are covered by statutory health insurance, and among those are the chronically ill, elderly and low-income people.32 Health insurance status was included in the analysis, since we assume differences between insurance statuses and sociodemographic characteristics of the patients exists. Stage of cancer was assessed using the Union Internationale Contre le Cancer (UICC) categories, which are based on tumor size, lymph nodes and metastases as indicated by medical personnel.34 Type of diagnosis was reported by the patients themselves. Patients could indicate whether the suspected diagnosis of breast cancer arose in the context of mammography screening, prevention examinations, self-palpations, perceived symptoms or other/ missing. Type of surgery was indicated by medical personnel (breast-conserving surgery vs mastectomy with or without reconstruction). Secondary disease was assessed by asking patients whether they had any of the following diagnoses: cardiovascular disease, hypertension, diabetes, stroke, pulmonary disease, kidney disease, arthritis or rheumatism, overweight, other cancer disease, or psychological illness. Three sequential models using STATAMP 15 were calculated to explain the association between breast cancer patients with and without disability, breast cancer diagnosis through mammography screening and type of surgery. In model I, a multilevel logistic regression model was computed to test the association between sociodemographic, clinical patient characteristics and diagnosis of breast cancer through mammography screening. In model II and III, the association between sociodemographic, clinical patient characteristics, type of disability and type of surgery, Breast conserving surgery as the dependent variable (model II) and mastectomy without reconstruction as the dependent variable (model III) was analyzed in a multilevel logistic regression. As the data were hierarchically structured, with patients nested within hospitals, multilevel modeling was used to account for clustering.35 First, a twoelevel model without predictors (null model) was fitted in

3

order to calculate the intra-class correlation coefficient (ICC). The ICC provides an insight into the degree to which the dependent variables (mammography screening, type of surgery) varies between hospitals. In a second step, all of the above-mentioned patient characteristics were added as predictors at the patient level. No imputations were performed for missing data. Cases with missing data for the dependent and independent variables were excluded (listwise deletion). In model I n ¼ 1.099 (24%) missing data and in model II and III n ¼ 1.033 (22%) missing data were excluded (listwise deletion). All independent variables were tested for multicollinearity. Multiple significance tests in the model were conducted; therefore, a correction of type I errors was necessary. To control the maximum family-wise error rate at the 5%-level for each model a Bonferroni Holm correction of the p-values was applied in each model separately. The different significance levels result from the differences in the significant values in the models.36 Results We had access to full data from 88 hospitals that fulfilled the criteria for being accredited as a breast care center. A total of n ¼ 4626 patients were included in the analysis (response rate 89%). A little more than 99% were female. More than 97% of the patients had no metastases. 74% of the patients had undergone breast-conserving surgery. Most respondents were classified as having UICC stage 1 (a low cancer stage). The largest proportion of respondents had completed lower or intermediate secondary school (44%). More than half of the respondents (66%) stated that they had one or more further medical indications. About 13% (n ¼ 568) of the patients had a disability proven by a severely disabled person's identity card prior to the breast cancer disease. Patients with disabilities are on average 4 years older than patients without disabilities (median 64 years vs. 60 years), when operated on primary breast cancer. The majority of breast cancer patients with disabilities had physical limitations (n ¼ 386; 68.0%) or sensory impairments (n ¼ 131; 23.1%). About 17% of breast cancer patients indicated to having mental illness (n ¼ 95; 16,7%) and 1.4% indicated having intellectual disabilities (n ¼ 8; 1.4%). About a quarter of the breast cancer patients with a disability reported having multiple disabilities (n ¼ 147; 25.9%). The majority of patients with disabilities report a moderate degree of disability (56%). S69% of patients with physical disabilities, 47% of patients with sensory impairments and 52% of patients with mental illness cite an illness as the cause for their disability. A total of 7% of patients with disabilities report having a disability since birth (Table 1). About 30% of patients with sensory impairments (27%) or mental illnesses (37%) report “other cause” than illness, accident, or birth. The majority of breast cancer patients with disabilities have statutory health insurance (89%). Breast cancer patients with disabilities report significantly more secondary diseases. For example, 11% of patients with a disability report another cancer disease prior to the breast cancer disease, while only 4% of the patients without a disability report another cancer disease prior to the breast cancer disease. Further 50% of patients with a disability report hypertension in comparison to 36% of patients without a disability. 25% of patients with a disability report cardiovascular disease or overweight/adipositas, while in patients without a disability only 11% report cardiovascular disease and 14% report overweight/adipositas (Table 2). The majority of patients with disabilities indicate a barrier-free use of medical equipment and surgery (69% respectively 82%). In addition, patients indicate that 68% of the physicians and nurses could satisfy all needs concerning their disability (Table 3). We checked our data for support in filling in the questionnaire,

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873

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Table 1 Descriptive results: cause of disability.

Patients Patients Patients Patients Patients

with with with with with

Physical Disability (PI) Sensory Disability (SI) Mental Illness (MI) Intellectual Disability (ID) Multiple Disabilities

Total patients with Disability

By birth n (%)

By accident n (%)

By illness n (%)

Other n (%)

Missings

Total n (%)

25 (6%) 12 (9%) 2 (2%) 2 (25%) 9 (6%)

28 (7%) 5 (4%) 2 (2%) 0 (0%) 7 (5%)

264 (69%) 62 (47%) 49 (52%) 3 (38%) 87 (59%)

46 (12%) 35 (27%) 35 (37%) 2 (25%) 35 (24%)

22 (6%) 17 (13%) 7 (7%) 1 (12%) 9 (6%)

385 (100%) 131 (100%) 95 (100%) 8 (100%) 147 (100%)

41 (7%)

28 (5%)

342 (60%)

105 (18%)

52 (9%)

568 (100%)

z Multiple answers regarding type of disability possible.

assuming that patients with disabilities received more assistance in completing the questionnaire. In general, 15% of the patients indicated to have received support in filling in the questionnaire. Of those, 20% of patients with physical disabilities, 16% of patients with mental illness, 33% of patients with sensory impairments, and 50% of patients with intellectual disabilities. Our data show significant relationships between age, secondary disease, UICC stage, health insurance status and diagnosis through mammography screening on a p-level < 0.01. Older patients are a little less likely to be diagnosed with breast cancer through mammography screening (OR: 0.98) Patients with one or more secondary diseases (OR: 1.17) and a statutory health insurance (OR: 2.10) were more likely to be diagnosed with breast cancer through mammography screening. Patients with UICC stage II/IV were less likely to be diagnosed with breast cancer through mammography screening than patients with UICC stage 0/I (OR: 0.26) (Table 4). Further, our data show significant relationships between UICC stage, physical impairment and breast conserving surgery on a plevel < 0.005 (Table 4). More specifically, patients with physical impairments are less likely to receive a breast conserving surgery even after controlling for age, education, UICC stage, secondary diseases, and health insurance status (OR: 0.58). Patients with a UICC stage II-IV are less likely to receive a breast conserving surgery (OR: 0.31) (Table 4). Moreover, patients with physical impairments (OR: 1.96), patients with a UICC stage II-IV (OR: 4.23), and older patients (OR: 1.05) have a greater chance of undergoing a mastectomy without reconstruction even after controlling for education, second diseases, and health insurance status on a p-level < 0.001 (Table 4).

Discussion The aim of this study was to examine the health care of breast cancer patients with pre-existing disabilities regarding cancer diagnosis and type of surgery in Germany. We found that the majority of patients with disabilities indicate a barrier-free use of medical equipment and surgery; and that 68% of the patients indicated that physicians and nurses could meet all needs concerning their disability.

Multilevel logistic regression model I In general, patients with a UICC stage II-IV were less likely to be diagnosed with breast cancer through mammography screening than patients with a lower UICC stage (0/I). Patients with secondary diseases and a statutory health insurance were more likely to be diagnosed with breast cancer through mammography screening than patients without secondary diseases and a private health insurance. Our results in model I indicate that higher educated breast cancer patients and privately insured patients were less likely to be diagnosed with breast cancer through mammography screening. The results are in line with a German mammography screening study in which non-participants in mammography screening have a higher level of education and are more often privately insured.37 A further study from Germany showed a significant positive association between private insurance status, higher educational status and the diagnosis of breast cancer outside mammography screening.38 Thus, it is possible that in Germany important co-

Table 2 Descriptive results: secondary disease.

Patients with Physical Disability (PI) Patients with Sensory Disability (SI) Patients with Mental Illness (MI) Patients with Intellectual Disability (ID) Patients with Multiple Disabilities Total patients with Disability

Cardio-vascular Hyperdisease n (%)* tension n (%)*

Kidney Diabetes Stroke Pulmonary n (%)* n (%)* disorder n (%) disease n (%)* *

Psycho-logical disease n (%)*

Over-weight/ Other cancer Total Arthritis/ rheumatism n obesity n (%)* disease n (%)* n (%) (%)*

113 (32%)

200 (57%)

55 (16%) 31 (9%)

64 (18%)

30 (9%)

58 (17%)

108 (31%)

101 (29%)

48 (14%)

350 (100%)

45 (38%)

84 (70%)

29 (24%) 8 (7%) 25 (21%)

10 (8%)

24 (20%)

38 (32%)

35 (29%)

12 (10%)

19 (20%)

37 (39%)

11 (12%) 4 (4%) 17 (18%)

5 (5%)

81 (85%)

13 (14%)

33 (39%)

8 (8%)

2 (25%)

4 (50%)

3 (38%)

2 (25%)

0 (0%)

5 (62%)

2 (25%)

6 (75%)

1 (13%)

120 (100%) 95 (100%) 8 (100%)

47 (32%)

83 (57%)

25 (17%) 10 (7%)

30 (20%)

11 (8%)

52 (35%)

40 (27%)

47 (32%)

18 (12%)

147 (100%)

141 (25%)

281 (50%)

82 (14%) 35 (6%)

91 (16%)

39 (7%)

124 (22%)

132 (23%)

143 (25%)

61 (11%)

568 (100%)

1474 (36%) 321 (8%) 80 (2%)

323 (8%)

75 (2%)

248 (6%)

340 (8%)

584 (14%)

161 (4%)

4058 (100%)

Total patients 426 (11%) without Disability

1 (13%)

* Multiple answers possible. z Multiple answers regarding type of disability possible.

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873

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Table 3 Descriptive results: barrier-free accessibility. Were the treatment rooms necessary for Were the medical equipment required for Were the physicians/nurses able to meet the hospital stay barrier-free accessible? diagnostics and treatment barrier-free? your disability needs? YES N (%)

NO DON’T KNOW MISSING YES N (%) N (%) N (%)

NO N (%)

DON’T KNOW MISSING YES N (%) N (%)

NO N (%)

DON’T KNOW MISSING N (%)

Patients with Physical Disability (PI) Patients with Sensory Disability (SI) Patients with Mental Illness (MI) Patients with Intellectual Disability (ID) Patients with Multiple Disabilities

317 (82%) 113 (86%) 75 (79%) 6 (75%) 120 (82%)

6 3 3 0 3

48 (12%) 11 (8%) 16 (17%) 0 (0%) 18 (12%)

14 (4%) 4 (3%) 1 (1%) 2 (25%) 6 (4%)

268 (70%) 101 (77%) 66 (69%) 5 (63%) 107 (73%)

8 1 3 0 2

86 (22%) 24 (18%) 25 (26%) 1 (13%) 31 (21%)

14 (4%) 5 (4%) 9 (10%) 1 (13%) 7 (5%)

75 (19%) 21 (16%) 23 (24%) 1 (13%) 28 (19%)

Total patients with Disability

463 (82%) 8 (1%) 76 (13%)

21 (4%)

394 (69%) 12 (2%) 132 (23%)

(2%) (2%) (4%) (0%) (2%)

(2%) (1%) (3%) (0%) (1%)

23 (6%) 5 (4%) 1 (1%) 2 (25%) 7 (5%)

264 (69%) 96 (73%) 55 (58%) 4 (50%) 100 (68%)

30 (5%)

387 (68%) 23 (4%) 113 (20%)

32 (8%) 9 (7%) 8 (8%) 2 (25%) 12 (8%) 45 (8%)

z Multiple answers regarding type of disability possible.

factors like education and insurance status are decisive for the use of mammography screening and thus also for the diagnosis in the context of mammography screening. Additional, odds ratios for cancer diagnosis through mammography screening (not significant on a p-level 0.01) show that patients with physical or sensory impairments tend to be diagnosed less often through mammography screening than patients without physical or sensory disabilities, even if important co-factors as age, education or health insurance status were taken into account in the model (Table 4, model I). However in our descriptive data analysis, group differences in the context of cancer diagnosis through mammography screening could be found between women with (35%) and without disabilities (41%). Hence, our descriptive data might be an indication that women with disabilities are less likely to be diagnosed with breast cancer through mammography screening. Our study exclusively investigated whether there are differences in the frequency of suspected diagnosis in mammography examinations between breast cancer patients with and without disabilities. We did not have data on different rates of receiving mammography screening between women with and without disabilities. Although international data show lower participation rates in mammography screening in women with disabilities,15 our data do not answer the question of participation in screening. Differences in breast cancer diagnosis through mammography screening, as found in our study, should therefore be examined more deeply. Multilevel logistic regression model II and III Older breast cancer patients tend to receive a mastectomy (OR: 1.05) rather than a breast conserving surgery (OR: 0.99). Further, breast cancer patients with secondary diseases receive a breast conserving surgery rather than patients without secondary diseases (OR: 1.07; model II). Patients with physical impairments and UICC stage II-IV are less likely to receive a breast conserving surgery and are more likely to receive a mastectomy without reconstruction. This result is in line with our previous study results.26 The odds ratios for people with sensory impairments or mental illnesses regarding type of surgery were not significant on a p-level 0.05. However odds ratios show that breast cancer patients with sensory impairments or mental illness tend to receive a mastectomy (OR: 1.19, OR: 1.43; p > 0.05) rather than a breast conserving surgery (OR: 0.79; OR: 0.70; p > 0.05) when controlling for age, education, UICC stage, secondary disease and type of health insurance. The results found in our study are in line with an international study reporting that breast cancer patients with mental illness have lower rates of breast conserving surgery.25 There is reported international evidence that patients with disabilities are diagnosed at a higher stage of cancer, which might affect treatment

decisions.15e17 However, our results show no significant differences in cancer stage between breast cancer patients with and without disabilities. Reasons for higher mastectomy rates might be due to patients' decision making in favor of mastectomy due to fear of recurrence or further follow-up treatments involving additional appointments and longer treatment phases. Another reason might be that physicians would rather suggest mastectomy and not breast conserving surgery to older patients and patients with disabilities. Differences in physician communication as well as differences in patients’ health literacy and decision making might contribute to the reported differences. Strengths and limitations Despite the study's important findings, several limitations require further attention. First, there are no data regarding the demographics, medical characteristics or possible disabilities of non-participants. The multi-level analysis did not allow us to make a statement about the relationship between the diagnosis and the type of surgery in people with intellectual disabilities. The group of breast cancer patients with an intellectual disability included in this study was too small for inferential statistics. Despite the high response rate, participation bias cannot be ruled out, as patients with disabilities indicated more often that they had received assistance in completing the questionnaire. When patient-reported data are assessed as in the present study, there is a risk of social desirability bias and common method bias. Given the cross-sectional design, the results do not allow any conclusions to be drawn regarding causality. Unfortunately, our data neither contain physician data to examine physicians' point of view regarding mammography screening for women with a disability or the decision-making process with patients with a disability. Furthermore, we did not have data on differences between women, with and without disabilities, who participated in cancer screening. Conclusion Our findings agree with international studies and discuss a general problem within inequalities in health care for people with disabilities independently from the type of disability or the secondary disease. Our data show that there are inequalities in diagnostics and in type of surgery among patients with disabilities. Patients with a physical disability are less likely to receive a breast conserving surgery and more likely to receive a mastectomy without reconstruction. Since our quantitative data do not allow any conclusions to be drawn as to why these inequalities in health care exist, future research is needed to clarify why those inequalities in diagnosis and treatment exist. It is recommended that a qualitative approach is utilized to examine the structured

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873

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Table 4 Results from the multilevel logistic regression analysis; odds ratios (95% confidence intervals). Model I Mammography screening

Model III Mastectomy without reconstruction

Model II Breast conserving surgery

Age

0.98 (0.97e0.99)

0.99 (0.98 e1.00)

1.05 (1.04e1.06)

Disability Physical impairment (n ¼ 385)

0.70 (0.52e0.96)

0.58 (0.44 e0.77)

1.96 (1.42e2.68)

Ref.* no physical impairment Sensory impairment (n ¼ 131)

0.58 (0.34e0.99)

0.79 (0.50 e1.22)

1.19 (0.72e1.95)

Ref. no sensory impairment Mental illness (n ¼ 95)

0.66 (0.38e1.13)

0.70 (0.42 e1.17)

1.43 (0.79e2.60)

Ref. no mental illness Union Internationale Contre le Cancer Stage II -IV

0.26 (0.22e0.30)

0.31 (0.27 e0.37)

4.23 (3.48e5.15)

Ref. Stage 0-I Secondary disease

1.17 (1.10e1.25)

1.07 (1.00 e1.14)

0.97 (0.90e1.05)

Ref. no secondary disease Statutory health insurance

2.10 (1.60e2.75)

1.03 (0.80 e1.33)

0.88 (0.65e1.19)

Ref. private health insurance Highest graduation certificate achieved without school graduation certificate

2.12 (1.23e3.64)

0.78 (0.45 e1.35) 0.82 (0.62 e1.08) 1.08 (0.81 e1.43) 1.10 (0.86 e1.40) 0.89 (0.66 e1.19)

1.73 (0.92e3.29)

lower secondary school

1.05 (0.79e1.39)

Intermediate secondary school

1.57 (1.21e2.05)

Junior high school

1.05 (0.84e1.34)

Upper secondary school

0.87 (0.65e1.16)

1.20 (0.87e1.66) 1.19 (0.85e1.68) 1.04 (0.76e1.42) 1.25 (0.86e1.83)

Ref. Abitur n patient n hospitals ICC** full model (ICC null model)

3527 86 0.03 (0.03)

3593 86 0.03 (0.03)

3593 86 0.07 (0.05)

Random-effects Parameters hospital level (SE***)

0.29 (0.06)

0.31 (0.06)

0.51 (0.07)

Statistically significant odds ratios on 95% confidence intervals are in boldface. *Ref.: reference category. **ICC: Intra-class correlation coefficient. ***SE: Standard Error.

identification of barriers, communication difficulties and (information) needs of breast cancer patients with different types of disabilities. Once the above is determined, a means for communicating the information to health care providers will need to be developed. Up until now, there has been a lack of measures, concepts and interventions for needs-oriented health care for breast cancer patients with disabilities. Such research could further clarify the different perspectives of people with different types of disabilities and their health care providers, which may lead to a more patient-centered provision of health care for people with disabilities.

Rhine-Westphalian Ministry of Work, Health, and Social Affairs (MAGS NRW). The hospitals provided patients’ addresses and clinical information as reported. Costs were absorbed by the participating hospitals as part of the Breast Cancer Center certification and benchmarking process. No additional funding was received for the study. Neither the ministry nor the hospitals were involved in the analysis and interpretation of results or preparation of this manuscript. Declaration of competing interest The authors state no conflict of interest.

Ethics committee approval Acknowledgment The Ethics Committee of the Medical Faculty of the University of Cologne approved this study. We confirm that all patient identifiers have been removed or disguised so that the patient described are not identifiable. Funding The patient survey was requested and initiated by the North

The authors would like to express their thanks to the breast care centers and patients whose participation and intensive collaboration made this study possible. Thanks to Markus Alich, Natalia Cecon, Lea Rütten and Pascal Hoffmann who assisted in patient data collection. Lyna Smith supported in English proof reading. Further, we thank the reviewers for their insight and effort. The comments and suggestions they provided were invaluable in helping us to clarify our message.

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873

S.E. Groß et al. / Disability and Health Journal xxx (xxxx) xxx

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Presentations and Abstracts at Conferences: 1. Groß SE, Kowalski C, Ansmann L, Pfaff H, Groß-Kunkel A. Health Care of Breast Cancer Patients with Disabilities. Berlin: 33. German Cancer Congress; 2018. 2. Groß-Kunkel A, Pfaff H, Groß SE. Versorgung von Brustkrebspatientinnen mit (geistiger) Behinderung. Konferenz der Lehrenden der Geist€dagogik an Hochschulen; 2018. igbehindertenpa 3. Groß SE, Kowalski C, Ansmann L, Pfaff H, Groß-Kunkel A. Versorgung von Brustkrebspatienten mit Behinderung. Berlin: 16. Deutscher Kongress für Versorgungsforschung; 2017. 4. Groß SE, Kowalski C, Ansmann L, Pfaff H, Groß-Kunkel A. (Psychosoziale) Versorgung von Brustkrebspatienten mit Behinderung. Gemeinsame Jahrestagung der Deutschen Gesellschaft für Epidemiologie (DGEpi), der Deutschen Gesellschaft für Medizinische Soziologie (DGMS) und der Deutschen Gesellschaft für Sozialmedizin €vention (DGSMP). Universita €t zu Lübeck; 2017. und Pra

Please cite this article as: Groß SE et al., Health disparities among breast cancer patients with/without disabilities in Germany, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100873