Background
Breast cancer patients are confronted with a serious diagnosis that requires them to make important decisions. These decisions regard treatment and many aspects of everyday life and require patients to be informed of the advantages and disadvantages of different options. According to the Institute of Medicine [
1], “many patients have expressed frustration with their inability to participate in decision making, to obtain information they need, to be heard, and to participate in systems of care that are responsive to their needs” (p. 48f). Previous studies have been consistent in their findings that (breast) cancer patients have a high need for information, especially concerning the severity of their condition and their treatment options [
2]. Halkett et al. found that breast cancer patients have a consistently high need for information, which does not significantly decrease over the course of treatment [
3]. Mistry et al. came to the same conclusion in a heterogeneous sample of cancer patients [
4].
Correlates of information needs have been well described in the literature. Matsuyama et al. found a negative relationship between education level and the information needs of cancer patients [
5]. In a study by Beckjord et al. with a heterogeneous sample of cancer patients, cancer survivors who were younger, had comorbid health conditions and had worse physical or mental health had more information needs [
6]. Neumann et al. were able to identify five subgroups of patients with different information needs [
7]. According to their classification, nearly one-third of their sample fell into the subgroup with no information needs, nearly 40% fell into one of the two subgroups with high psychosocial information needs, and approximately one in six fell into each of the remaining two subgroups, one that only had medical information needs and one with both psychosocial and medical information needs. Thus, one persisting problem is the relatively high proportion of breast cancer patients reporting unmet information needs or dissatisfaction with how their information needs are addressed by their health-care providers [
8],[
9]. The task of providing the right information to each single patient in a way he or she understands clearly is a challenge for each health-care professional and for the treating hospitals.
One of the most important sources of information for breast cancer patients is the hospital in which he or she is diagnosed and/or treated. Breast care centres in Germany, both certified according to the criteria of the federal state of North Rhine Westphalia [
10] and those of the German Cancer Society/German Society of Senology [
11], are demanded to undertake huge efforts to provide patients with information, be it paper-based or provided verbally by the hospital staff. Little research, however, has been done to investigate differences of information provision between health-care providers. Hence, research in this field using multilevel approaches has been demanded ([
12] p.58). Some studies investigated whether provider characteristics were associated with better informed patients e.g. [
13],[
14], but insight into what promotes or hinders information provision on the hospital level is still sparse. Given the substantial evidence that patient involvement in decision making results in improved outcomes, a hospital-level analysis of what contributes to reducing the proportion of patients with unmet information needs is warranted [
15]-[
17].
In this study we investigate which hospital characteristics are associated with patients’ unmet information needs. We extend the “conventional set” of structural characteristics employed in most studies, i.e. teaching status, ownership status, and size [
18], to include three process approaches that reflect hospitals’ efforts to inform and educate patients: providing patient-specific information material, providing access to self-help groups, and organization of health fairs for patients and families [
19]-[
21]. Providing tailored information has been described in the literature as a useful strategy of patient education [
14] and the IOM has long recommended tailoring of health information to patients’ needs [
22]. Providing access to self-help groups is the second approach investigated. Research evidence on the benefit of self-help group interventions is inconclusive, but a number of studies suggest that self-help groups play an important role in establishing patient-centered care [
23] and are associated with improved patient outcomes [
24]. The third approach investigated is the organization of information fairs for patients and their family. Information fairs contribute to increasing the accessibility of health information, empowering patients to take charge of their own care, and involving families in decision-making and accommodating their needs as caregivers.
We also consider the “conventional set” of hospital characteristics that reflect the hospital structure’ i.e., hospital ownership, patient volume, and teaching status. Hospital ownership may be critical because it determines the allocation of financial and nonfinancial resources in hospitals and thus their ability to meet patients’ information needs [
25],[
26]. Patient volume may influence (unmet) information needs through its impact on clinical workload, coordination, and clinicians’ practice experience [
27],[
28]. Teaching hospitals have better access to the latest medical knowledge and the most advanced medical technologies, which may enhance their ability to meet patients’ information needs than non-teaching hospitals [
29],[
30]. On the other hand, teaching hospitals have multiple missions and a more complex organizational structure that may increase the difficulty of coordinating the efforts of clinicians to meet the specific information needs of patients [
31]. Also considered in the analysis were patient attributes (e.g., age, education, cancer stage) that may affect (unmet) information needs.
Results
As seen in Table
1, which presents the average percentages (as well as minimums and maximums) of patients reporting unmet information needs, there remained unmet information needs in German breast cancer center hospitals and the degree of patient unmet information needs varied across hospitals as well as information topics. The four areas with highest unmet information needs were in relation to health promotion activities, physical and mental strains in daily life, rehabilitation services, and healthy lifestyles.
Table
2 presents the descriptive results of the independent patient level variables for those 5,024 patients from hospitals that also participated in the key informant survey. Two thirds of patients were between 50 and 69 years old and less than a quarter had a high school diploma qualifying for university or technical college. Close to 20% had some form of private insurance. Less than 4% spoke German as their second language. Roughly three quarters lived with a partner. With regard to disease and treatment characteristics, about one sixth of patients were in an advanced stage of cancer (stage III or IV); approximately 75% received breast-conserving treatment; the very majority of patients had cancer on one side.
Table 2
Patient characteristics (n = 5,024)
Age | |
18-39 | 4.1 (204) |
40-49 | 17.1 (850) |
50-59 | 27.7 (1,378) |
60-69 | 30.1 (1,500) |
?70 | 21.0 (1,044) |
Missing | (48) |
Highest education achieved | |
No education certificate achieved | 2.2 (107) |
Lower secondary school (8 or 9 yrs) | 41.4 (2,003) |
Intermediate secondary school (10 yrs) | 34.0 (1,642) |
High school certificate (12 or 13 yrs) | 22.4 (1,081) |
Missing/other | (191) |
Health insurance | |
SHI only | 81.8 (4,026) |
Private/SHI + voluntary additional insurance | 18.2 (898) |
Missing/other | (100) |
Living with a partner | |
Yes | 73.3 (3,644) |
No | 26.7 (1,330) |
Missing | (50) |
Native language | |
German | 96.2 (4,773) |
Other | 3.8 (187) |
Missing | (64) |
Stage | |
Stage 0 | 6.2 (264) |
Stage I | 45.6 (1,995) |
Stage II | 33.9 (1,453) |
Stage III | 10.6 (454) |
Stage IV | 3.7 (160) |
Missing | (738) |
Type of surgery | |
Mastectomy | 25.4 (1,219) |
Breast conserving treatment | 74.6 (3,573) |
Missing | (232) |
Cancer site | |
Left | 50.1 (2,437) |
Right | 47.2 (2,299) |
Both | 2.7 (129) |
Missing | (158) |
Results showed substantial variation among German breast cancer center hospitals in their efforts to adequately inform their patients (Table
3). Of the approaches, organization of patient and family health fairs was prevalent in 90 hospitals (81.1%) in the sample. Forty (36.0%) hospitals provided information material that was tailored to the specific patients. Only three hospitals (2.8%) provided breast cancer patients no access to self-help groups. No significant associations were found between the structure and process attributes except for providing specific information material that happened more often in teaching than in non-teaching hospitals.
Table 3
Prevalence of hospitals’ efforts relating to meeting patient-information needs
All hospitals | 40 (36%) | 71 (64%) | | 105 (97%) | 3 (3%) | | 90 (81%) | 21 (19%) | |
Ownership status | | | | | | | | | |
Public | 15 (27%) | 41 (73%) | 4.21 | 56 (100%) | 0 (0%) | 4.41 | 49 (88%) | 7 (12%) | 4.28 |
Charitable | 13 (45%) | 16 (55%) | | 27 (96%) | 1 (4%) | | 20 (69%) | 9 (31%) | |
For-profit | 12 (46%) | 14 (54%) | | 22 (92%) | 2 (8%) | | 21 (81%) | 5 (19%) | |
Patient volume | | | | | | | | | |
≤ 100 | 5 (38%) | 8 (62%) | 8.39 | 13 (100%) | 0 (0%) | 2.54 | 10 (77%) | 3 (23%) | 3.46 |
101 to 200 | 13 (25%) | 38 (75%) | | 49 (98%) | 1 (2%) | | 41 (80%) | 10 (20%) | |
201 to 300 | 12 (39%) | 19 (61%) | | 28 (93%) | 2 (7%) | | 26 (84%) | 5 (16%) | |
301 to 400 | 6 (75%) | 2 (25%) | | 8 (100%) | 0 (0%) | | 5 (63%) | 3 (38%) | |
> 400 | 3 (50%) | 3 (50%) | | 6 (100%) | 0 (0%) | | 6 100%) | 0 (0%) | |
Teaching hospital | | | | | | | | | |
Yes | 38 (40%) | 57 (60%) | 4.49* | 90 (98%) | 2 (2%) | .84 | 76 (80%) | 19 (20%) | .50 |
No | 2 (13%) | 14 (88%) | | 15 (94%) | 1 (6%) | | 14 (88%) | 2 (13%) | |
Results of the hierarchical linear model are presented in Table
4. The ICC of the fully unconditional model is 0.030, suggesting that between-hospital differences accounted for a small amount of variance in patient unmet information needs and that the variation occurred primarily at the patient level. Indeed, most of the patient-level variables examined in the study are statistically significant in explaining patient unmet information needs (model 1). Patients with the following attributes appeared to have greater unmet information needs: undergoing mastectomy, being younger, having statutory insurance coverage (lower income), not living with a partner, and speaking German as a second language. No statistical significance was found for cancer stage, education, and cancer site (not reported in the table for the sake of parsimony).
Table 4
Results of the hierarchical linear regression models on unmet information needs
Patient characteristics
| | | |
Mastectomy | .23* | .23* | .23** |
Statutory health insurance | .18* | .18* | .19* |
Not living with a partner | .37*** | .36*** | .37*** |
Age groups (ref. 60 to 69) | | | |
≤ 39 | .64*** | .63*** | .62*** |
40 to 49 | .40** | .41** | .40** |
50 to 59 | .42** | .43*** | .43*** |
≥ 70 | -.47*** | -.47*** | -.47*** |
Native language other than German | .82*** | .82*** | .81*** |
Hospital characteristics - structure
| | | |
Teaching | | .23 | .32** |
Patient volume (ref. 101 to 200) | | | |
≤ 100 | | -.09 | -.05 |
201 to 300 | | .41** | .45** |
301 to 400 | | -.07 | .09 |
≥ 401 | | .04 | .21 |
Ownership (ref. for-profit) | | | |
Public | | -.01 | -.11 |
Charitable | | -.11 | -.18 |
Hospital characteristics - process
| | | |
Patient-specific information material | | | -.39** |
Access to self-help groups | | | .18 |
Health fairs for patients/family | | | -.26* |
Variance components for random effects:
|
Between-hospital variance (τ00); SD | .20; .44*** | .16; .40*** | .14; .37*** |
Degrees of freedom | 110 | 98 | 98 |
Chi-square | 262.91 | 212.21 | 185.16 |
ICC (FUM: .030) | .032 | .025 | .022 |
Addition of hospital structural and process characteristics (models 2 and 3) improved the model fit and led to a reduction of the ICC (0.025, 0.022, respectively). Based on the change in ICC, those variables contributed to reducing the amount of unexplained variance on the hospital level by over 30%. Two of the three process characteristics - provision of patient-specific health information and organization of patient and family health fairs - had a negative and statistically significant coefficient, suggesting that they contributed to reducing unmet patient information needs. No association was found for providing access to self-help groups.
Among the hospital structural characteristics, teaching status was significantly positively associated with unmet information needs. Higher patient volume appeared to be associated with higher unmet information needs.
Discussion
Consistent with previous research, substantial proportions of breast cancer patients reported unmet information needs in various areas. In this study we investigated associations of unmet information needs with hospital-level structure and process characteristics, in addition to patient-level attributes.
In our analysis, most of the variation in patient unmet information needs was accounted for by breast cancer patients’ socio-demographic and disease characteristics. These findings are consistent with the literature. Finney Rutten et al. [
2], for example, found in their review that age was negatively associated with seeking information among cancer patients. Veloso et al. [
39] observed that higher information needs tended to occur in patients with less resources, including social and familial support. A patient characteristic that has not been broadly discussed in the literature and is shown to be strongly associated with unmet information needs in this study is the primary language of the patient. We found breast cancer patients that spoke German as a second language were more likely to have unmet information needs. This finding, though not surprising, points to an increasing challenge of health care providers in developed countries in meeting the needs, including health information needs, of immigrant patient populations [
40],[
41].
The ICC of the hierarchical linear modeling was relatively small, suggesting that between-hospital differences (i.e., hospital-level factors) contributed to explaining the variance in patient unmet information needs only to a little extent. In Germany, breast cancer centers were established with the aim to reach a consistently high level of care quality. This may explain the small ICC in the analysis. In fact, the ICC in our analysis was comparable with those reported in previous research and analyses that show a high ICC in relatively standardized health care settings are rare. Sjetne et al., for example, reported ICCs ranging from 0.002-0.065 for several patient experience indicators [
31].
We, however, found that breast cancer patients treated in teaching hospitals were significantly more likely to report unmet information needs. The research literature has reported inconsistent results regarding the performance of teaching hospitals perform in different areas. Several studies found that, in comparison to non-teaching hospitals, teaching/academic hospitals achieved better results in process and, especially, outcome aspects of clinical care quality [
42]-[
45]. Landon et al. found teaching status to be associated with better diagnosis and treatment performance, but worse patient counselling [
46]. An explanation of these various results is that teaching hospitals have multiple missions and that they have difficulties simultaneously maintaining excellence in clinical care, teaching and research, and successfully meeting patients’ information needs.
We in addition found that two of the approaches that reflect the hospitals’s effort to inform and educate their patients - provision of patient-specific health information material and organization of patient and family health fairs - were associated with smaller unmet information needs. Epstein & Street [
12] and the IOM [
1] called for research to examine the organizational context of patient-centered care. Mulcare et al. pointed out that few studies had investigated factors explaining patient information needs [
47]. Our study fills these gaps to some extent, but must be interpreted with caution: Neither do we know what specifically was done during health-fairs nor do we know what quality the information material was. In addition, we need to rely on information provided by the key informants’ and cannot exclude over-reporting.
Our findings, however, may have relevant practical implications. Considering the large amount of information a patient might receive during her hospital stay, provision of tailored information that is most relevant to the patients and that meets her specific needs is critical. While tailoring the content of health information to patients is important, it may be equally important to consider the appropriate way that information is delivered to patients - in written form, using graphic display or multi-media presentation, or through oral communication [
48],[
49]. It is reassuring to note that hospitals’ investment in health fairs may be worthwhile. Compared to other hospital-level health activities and interventions such as case management, health fairs are relatively “resource-light”. There is so far little evidence in the literature on the effectiveness of health fairs and specific aspects that make health fairs successful. Neither is there a consensus on the utility of different types of information and educational events for patients, friends, and family. The results reported here need further investigation with respect to both tailoring patient information and organizing health fairs.
We failed to find a significant association between provision of access to self-help groups and patient information needs. There are three likely explanations. First, the approach was implemented in the majority of studied breast cancer center hospitals. Thus, the variation may be too small to detect any significant association. Second, access to self-help groups, unlike the other two “direct contact” approaches [
50] to meeting patient information needs, may not be as an effective way to facilitate and manage the flow of useful health information to patients. Third, it could be that self-help groups are more effective in providing emotional and tangible support rather than disseminating health information.
Several research limitations should be considered when interpreting the results of this study. The cross-sectional design of the study made causal interpretations difficult. Furthermore, the results were obtained from a sample of breast cancer patients treated in accredited breast cancer center hospitals in Germany. It is unclear whether the results are generalizable to other patient populations and other health care settings in a different country. We were unable to assess systematic differences in patient participation in the survey. Patients with a low health literacy level and less capable of making informed health care decisions may be less likely to respond to the survey and may have greater unmet information needs. To the extent this is true, we may have under-estimated the degrees of unmet information needs. The same problem of underestimation may occur in patients with more severe breast cancer conditions.
Acknowledgements
We would like to thank the patients who participated in the survey and the breast cancer centres supporting this study. We confirm that all patient identifiers have been removed or disguised so that the patients described are not identifiable. Thanks to Markus Alich, care research lab manager at the IMVR, who assisted in patient data collection, and to Stefanie Sauter, who contributed to the key informant interviews. The patient survey was initiated and supported by the German Cancer Society, with partial funding from AVON. The cost for the key informant interviews was covered by capital resources of the IMVR. The hospitals provided patients’ addresses and clinical information, as reported. The hospitals were not involved in the analysis and interpretation of results, or preparation of this manuscript. The writing was done during the first author’s stay at the University of Michigan that was financed by the German Research Foundation (Grant number: Ko 3856/2).
Competing interests
The authors declare that they have no competing interests.