Health literacy and the provision of information to women with breast cancer

Aims

Health literacy and functional health literacy are important for patients with cancer, as key information regarding treatment complications and clinical trials is often imparted using written educational material. This study measured the health literacy and functional health literacy levels in a population of women with breast cancer and compared these with the level of written information provided.

Materials and methods

A cross-sectional survey of women with stage I-III breast cancer attending an outpatient clinic was conducted. Health literacy levels were assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM) score and functional health literacy was assessed using three validated screening questions. Patient education materials were assessed using the Simple Measure of Gobbledygook (SMOG) and Flesch Reading Ease (FRE) systems.

Results

One hundred and twenty-seven women were recruited. For patients, the mean REALM score was 64.3 (≥US 9th grade/reading age 14 years). The mean SMOG score of patient education materials was 80.5 (reading age 17 years). The mean FRE score of patient education materials was 55.7 (reading age 15-17 years). All patient information sheets assessed were written at ≥8th grade (reading age 13 years) and as a result up to 9% of patients would be unable to read them. Nineteen per cent of the population had inadequate functional health literacy.

Conclusions

Health literacy levels were high in the population studied. However, the reading level of written patient information was also high, meaning that up to 9% of patients would be unable to read the information provided. Functional health literacy levels were lower, with 19% of patients having inadequate ability. This means that although most patients are able read the information sheets provided, there is a larger proportion that would be unable to understand and act upon this information. Patient education materials should be written at an appropriate level and different modalities of communication should be used to ensure adequate comprehension.     

Health literacy: more choice,but do cancer patients have the skills to decide?

As health care moves towards greater choice, with shared responsibility and decision making between doctors and patients, a variety of resources and skills are needed by individuals if they are to be active participants in their health. Health literacy is the ability to make the most out of health. For an individual, it is the capacity to obtain, interpret and understand basic health information and services in ways that enhance health. In developed countries, however, over half of the population have reading and comprehension difficulties, creating a gap between the educational expectations of health-care services and an individual's ability to understand. This review highlights the difficulty many cancer patients face as a consequence of their poor literacy and comprehension skills. It draws attention to a problem whose magnitude is not always easy to recognize and suggests simple ways health professionals can more effectively communicate with their patients.     

The Living with Cancer Education Programme. I. Development of an Australian education and support programme for cancer patients and their family and friends

After a diagnosis of cancer, patients and their families and friends experience a significant need for information about the illness, treatment and prognosis, as well as support. Structured education and support group-based programmes play a major role in meeting these needs. Following a needs assessment in 1985, the Anti-Cancer Council of Victoria (ACCV), Australia, initiated development of the Living With Cancer Education Programme (LWCEP), a structured 8-week group programme providing education and support for people with cancer and their families and friends. This paper provides an historical overview of the LWCEP, as well as an outline of the programme aims, structure, content and delivery. Recent developments and future directions are also discussed. These include adaptation of the programme for individuals with advanced or recurrent cancer, modification of the programme structure and revision of the evaluation methodology.     

Determination of Information and Support Needs of First Degree Relatives of Women with Breast Cancer

Background: Breast cancer is the most frequent type of cancer among women in the world and the mostcommon cause of deaths from cancer in females. In Turkey, breast cancer comes first in the list of the mostfrequent ten cancer types seen in women. As the incidence rate of breast cancer is high, many women havingbreast cancer in the family experience the breast cancer at secondhand. This study was carried out in an attemptto determine the information and support needs of women whose first-degree relatives have breast cancer andto what extent these needs are met. Methods: The research sample consisted of 156 women. Questionnaire Formand Information and Support Needs Questionnaires were used as the data collection tools. Results: Informationneed score averages (x̄:3.72±0.19) of women included in the research sampling were found to be higher than theirscore averages of support needs (x̄:3.24±0.41). Conclusion: Information needs which were indicated by womenas very important were related to treatment, symptoms of breast cancer and breast self examination (BSE), whilesupport needs which were indicated by women as very important were learning how to perform BSE, women’sanxiety for themselves and their relatives regarding breast cancer and having their breasts examined by a healthprofessional. It is recommended that nurses and other medical staff should give information to women whosefirst-degree relatives have breast cancer about the disease, its etiology, scanning, diagnosis, treatment optionsand protection as well as prevention.     

Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors

BACKGROUND.: Sources of cancer-related information are rapidly increasing, but little is known about whether the health information available to cancer survivors meets their needs. METHODS.: The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11 years after their diagnosis for 6 common cancers. They analyzed their views about 5 types of cancer-related information, the quality of that information, barriers to getting it, their experiences with physicians providing cancer care, and the quality of their cancer care. RESULTS.: Among 462 (61%) respondents who reported needing cancer information, many gave unfavorable ratings (fair or poor) of the quality of cancer information regarding cancer support groups (38%), long-term side effects (36%), experiences of other cancer patients (26%), and cancer physicians (26%). About 20% of respondents reported sometimes experiencing barriers to obtaining cancer information, although fewer than 10% usually or always experienced barriers. For both men and women, worse physical and mental functioning was associated with greater need for information, worse ratings of information quality, and more barriers to obtaining information (all P<.01). Cancer survivors who were black or had lower incomes reported more problems obtaining needed information, and younger women had greater information needs than older women (all P <.01). CONCLUSIONS.: Opportunities exist to improve the quality, content and delivery of cancer-related information to survivors, especially for those who are racial/ethnic minorities, have low incomes, or are in worse physical or mental health. Providing information more effectively to cancer survivors may improve their care and health outcomes. Cancer 2008. (c) 2008 American Cancer Society.     

The Roles of Support Seeking and Race/Ethnicity in Posttraumatic Growth Among Breast Cancer Survivors

Posttraumatic growth (PTG) after cancer can minimize the emotional impact of disease and treatment; however, the facilitators of PTG, including support seeking, are unclear. The authors examined the role of support seeking on PTG among 604 breast cancer survivors ages 40 to 64 from the Health Eating, Activity, and Lifestyle (HEAL) Study. Multivariable linear regression was used to examine predictors of support seeking (participation in support groups and confiding in health care providers) as well as the relationship between support seeking and PTG. Support program participation was moderate (61.1%) compared to the high rates of confiding in health professionals (88.6%), and African Americans were less likely to report participating than non-Hispanic Whites (odds ratio = .14, confidence intervals [0.08, 0.23]). The mean (SD) PTG score was 48.8 (27.4) (range 0–105). Support program participation (β = 10.4) and confiding in health care providers (β = 12.9) were associated (p < .001) with higher PTG. In analyses stratified by race/ethnicity, PTG was significantly higher in non-Hispanic Whites and African American support program participants (p < .01), but not significantly higher in Hispanics/Latinas. Confiding in a health care provider was only associated with PTG for non-Hispanic Whites (p = .02). Support program experiences and patient–provider encounters should be examined to determine which attributes facilitate PTG in diverse populations.     

Social Support and Adjustment Among Wives of Men with Prostate Cancer

This study aims to understand how wives’ mental health and life enjoyment are affected by their perceptions of the sufficiency of the support they render to their husbands who have prostate cancer. Its specific purpose is to determine whether these outcomes accrue more strongly to wives who perceive their husbands coping in avoidant ways. Drawing on data from an interview study of 51 wives of men diagnosed with prostate cancer, the authors employ heiarchical regression analysis to examine the wives’ adjustment in relation to their provision of support to their husbands. Our findings reveal a significant moderating effect of the husbands’ avoidant coping; consistent with cognitive dissonance theory, wives who provided sufficient support to more avoidant husbands demonstrated better mental health and life enjoyment than wives of men who were less avoidant. In addition, the perceived sufficiency of the support provided by the wives’ social networks had a stronger bearing on their adjustment than the support provided by their husbands. These findings add to our understanding of the psychological benefits that support providers derive when they communicate support in ways that suit the recipient's style of managing threat.     

Information needs across the colorectal cancer care continuum: scoping the literature

Because cancer care requires a multifaceted approach, providing useful and timely information to people with colorectal cancer may be fragmented and inconsistent. Our interest was in examining what has and has not captured the attention of researchers speaking to the information needs of people with colorectal cancer. We followed Arksey and O'Malley's framework for the methodology of scoping review. Focusing solely on colorectal cancer, we analysed 239 articles to get a picture of which information needs and sources of information, as well as the timing of providing information, were attended to. Treatment-related information received the most mentions (26%). Healthcare professionals (49%) were mentioned as the most likely source of information. Among articles focused on one stage of the care continuum, post-treatment (survivorship) received the most attention (16%). Only 27% of the articles consulted people with colorectal cancer and few attended to diet/nutrition and bowel management. This study examined the numerical representation of issues to which researchers attend, not the quality of the mentions. We ponder, however, on the relationship between the in/frequency of mentions and the actual information needs of people with colorectal cancer as well as the availability, sources and timing of information.     

Information preferences of women receiving chemotherapy for breast cancer

The aim of this cross-sectional survey was to identify a possible relationship between the information-seeking behaviour of patients receiving chemotherapy for breast cancer with source, type, amount and satisfaction of health information accessed. The sample (n = 36) were drawn from the medical oncology department of a large city centre teaching hospital. Participants were recruited through consecutive attendance to the medical oncology department. Eighty-six patients were invited to participate (response rate 42%). An anonymous self-report questionnaire and the Miller Behavioural Style Scale were used to measure attitudes towards 10 different sources of information and identify information-seeking behaviour. The study found that high information-seeking behaviour influenced the type of information sources used to find out about chemotherapy, but did not influence the level of satisfaction with the information sources used. Healthcare professionals were the most frequently used sources of information, but the majority of the sample used a variety of information sources. The Internet was the most frequently used mass media source of information (50% of the sample), especially by those under 50 years old (P = 0.033). Patients' behavioural signature needs to be considered when addressing their information needs. Oncology services need to provide patients with details of recommended high-quality websites to access for information about their chemotherapy.     

Associations of Self-rated Health and Socioeconomic Status with Information Seeking and Avoiding Behavior among Post-Treatment Cancer Patients

This study investigated how self-rated health and socioeconomic status are associated with behaviour ofcancer survivors regarding desire for information. For this association, we compared survivors who did notseek information about cancer with those who did. We examined how sociodemographic, socioeconomic, cancerrelated,and health information factors are associated with self-rated health (SRH) by health information seeking/avoiding behavior in a survey of 502 post-treatment cancer patients. In the information seeking group, all fourfactors exhibited significant relationships with SRH. SRH values were significantly high for women (p<0.05),non-Hispanic White (p<0.05), and educated (p<0.01) participants, and for those who had high self-efficacy to usehealth information by themselves (p<0.01). Furthermore, in the information avoiding group, not only were thereno significant relationships between socioeconomic status (SES) and SRH, but there were negative associationsbetween their attitude/capacity and the SRH. In terms of communication equity, the promotion of informationseeking behavior can be an effective way to reduce health disparities that are caused by social inequalities.Information avoiding behavior, however, does not exhibit a negative contribution toward the relationship betweenSRH and SES. Information seeking behavior was positively associated with SRH, but avoiding behavior wasnot negatively associated. We thus need to eliminate communication inequalities using health intervention tosupport information seeking behavior, while simultaneously providing support for avoiders.     

Life-Threatening Illness and the Nature of Social Support: Brief Research Report

ABSTRACT

Studies support the assumption that social connection and support are essential to adequately cope with a life-threatening illness. This exploratory study surveyed a small sample of cancer patients to ask them what they needed at the time of their initial diagnosis and what reactions to their illness that they perceived in others. The ability to clearly identify needs and reactions was deemed as important as the content of their responses. This study supports the premise that when asked cancer patients can identify their own needs and are clearly aware of others' reactions to their illness.     

Information and support needs of callers to the Cancer Helpline, the Cancer Council Victoria

The broad aims of the present evaluation were, firstly, to describe the information and support needs of callers to a Cancer Helpline and, secondly, to describe the response of the service to these needs. A further aim was to use these results to develop strategies to improve the service. Anonymous caller information collected over a 6-year period was analysed. The setting of the study was the Cancer Helpline service operated by the Cancer Council Victoria within the state of Victoria, Australia. The caller profile was similar to that described in the literature, with the majority of callers being women, younger than the general cancer population and enquiring most commonly about breast cancer. Patients and their relatives called to obtain information about cancer diagnosis, treatment and management and to obtain psychological and emotional support. Callers received emotional support, were supplied with verbal and written information and were referred to a variety of support services. Some population groups are underrepresented in the data. Changes to the Helpline and other services over the 6-year period are described. The pattern of callers to the Cancer Helpline appears similar to that described in the USA and Europe. Many issues and challenges are common. The paper discusses additional strategies for meeting the information and support needs of those affected by cancer and describes current and suggested research areas.     

Information provision to cancer patients: a practical example of identifying the need for changes in practice from the Dorset Cancer Centre

The aim of this study was to produce a patient-centred information strategy based on the results of a local survey of cancer patients about the information they receive and their information needs. An anonymous patient survey was distributed at the Dorset Cancer Centre, Poole Hospital, the regional cancer centre for Dorset, in the South-west of England. All patients attending the Cancer Centre during 1 week in September 1999 were asked to complete a questionnaire on patient experience of the Cancer Centre, information sources, receipt and quality of Centre information, and perception of information requirements. Two hundred and eighty-two were returned. Most respondents had accessed information from a number of sources. Written Cancer Centre information had been given to most patients, and was generally perceived to be useful, understandable and timely. However, most patients had received information 'all at once', from a single professional group, and a notable proportion did not recall discussing it with staff. Furthermore, most patients indicated that information should also be provided to families and professionals. Seven items of information were selected as valuable by the majority of patients, with many others listed. There was a great deal of satisfaction with the current content of the patient information provided. However, the distribution system was shown to be in need of improvement. A new information strategy has been developed in the light of these findings.     

Quality of Online Information on Multiple Myeloma Available for Laypersons

Online information can increase patients’ competence and engagement. However, there are concerns regarding invalid information. Overall, 300 websites and 50 YouTube videos on multiple myeloma (MM) were evaluated. The websites did not differ between the search engines or search ranks. The median time since the last update was 9 months. The 63 unique websites showed a poor general quality (median JAMA score 2 of 4, only 18% with a valid HON certificate). The patient- (user-) focused quality was medium to poor (median sum DISCERN score 41 out of 80 points). The overall reading level was difficult requiring at least a 12th US school grade. The content level was low (median 24 out of 73 points). Sixteen percent contained misleading/wrong facts. Websites provided by foundation/advocacies showed a significantly higher general and patient- (user-) focused quality. For videos, the median time since upload was 18 months. Judged by the HON foundation score ~80% of videos showed a medium general quality. The patient- (user-) focused quality was medium to poor (median sum DISCERN score 43 points). The content level was very low (median 8 points). MM relevant websites and videos showed a medium to low general, patient- (user-) focused and content quality. Therefore, incorporation of quality indices and regular review is warranted.     

Health Disparities in Unmet Support Needs of Women with Gynecologic Cancer: An Exploratory Study

International research suggests that many women with gynecological cancers have unmet supportive care needs that often correlate with greater psychological distress and poorer quality of life. The United States has a diverse population and evolving health care system, so this study aims to identify the support needs of women with gynecologic cancer in this geographic region. Furthermore, there are numerous health disparities with regards to cancer care; therefore, a second aim of this study is to explore health disparities in unmet support needs. Fifty-one women with gynecologic cancers completed an adapted version of the Supportive Care Needs Survey. Sociodemographic and cancer-related information were also collected. Findings revealed a high frequency of unmet support needs, particularly in the psychological, physical, and practical domains. Additionally, disparities in levels of support needs were found to be dependent on income and minority status. Specifically, unmet needs in the physical/daily living and practical domains were dependent on income, and minorities reported significantly higher support needs in the sexuality and psychological need domains than their majority counterparts. These results highlight the potential benefits of enhanced multidisciplinary services to better assess and address patients’ needs. Nonetheless even with enhanced services, the findings, consistent with other health disparities research, suggest lower income affects access to care, so more research is needed on how to overcome these barriers.     

Information needs of oncologists,general practitioners and other professionals caring for patients with cancer

Oncology is a rapidly developing field with a growing number of publications every year. The main goal of this survey was to learn more about the information needs of oncologists and general practitioners. Data were collected using a standardised questionnaire developed in collaboration with the German Cancer Society (Deutsche Krebsgesellschaft) and the German Association of General Practitioners (Deutscher Hausärzteverband). A total of 495 questionnaires could be evaluated. Medical congresses were the preferred source of information for all participants. General practitioners preferred textbooks, while oncologists preferred journals and the Internet (all p < .001). Reasons for a lack of confidence during patient consultation were lack of time (60% of participants), lack of knowledge (61% of general practitioners and 26% of oncologists) and lack of data (>50%). Oncologists felt more confident in searching scientific databases than general practitioners did. Both groups required rapid access to transparent information. For general practitioners, reviews and comments by experts helped to put new information in the context of cancer treatment. Oncologists and general practitioners showed significantly different information needs and different ways to access specific information. In order to better integrate general practitioners while simultaneously serving the needs of oncologists, a database that is up to date, rapidly accessible and does not incur high costs would be helpful.     

Measuring cancer patients' reasons for their information preference: construction of the Considerations Concerning Cancer Information (CCCI) questionnaire

Objectives: This paper describes the further development and psychometric properties of an instrument to measure cancer patients' reasons to want complete or limited information: the Considerations Concerning Cancer Information questionnaire (CCCI). Understanding cancer patients' reasons to want complete or limited information will provide the physician with information that enables him or her to tailor information giving. Methods: CCCI's content validity, internal structure, and convergent validity were investigated among 145 cancer patients, new to radiotherapy. Results: Underlying reasons for information preference among cancer patients were derived from existing qualitative studies, narratives, and interviews. This resulted in the CCCI containing two parts: reasons to favor complete information disclosure and reasons to prefer only limited information about disease and treatment. The four identified dimensions to prefer information consist of: sense of control, expectations of others, anxiety, and autonomy. The four dimensions for reasons to give up on acquiring information consist of: avoidance, optimism, comprehension, and not wanting to be a burden. Confirmatory factor analysis indicated that the measurement model provided good fit to the data. Scales had good internal consistency, satisfactory item‐total correlations corrected for overlap and satisfactory convergent validity. Conclusions: These findings confirm evidence of the reliability and validity of the CCCI for use in cancer care. Researchers and health‐care providers can use the instrument to assess cancer patients' reasons to want complete or limited information and provide tailored care. Copyright © 2010 John Wiley & Sons, Ltd.