The impact of genetic counseling on knowledge and emotional responses in Spanish population with family history of breast cancer

Objective

To assess a genetic counseling intervention measuring the distress, cancer risk perception, anxiety, worry and level of knowledge in people with familial history of breast cancer.

Methods

One group pre- and post-test design. A total of 212 individuals completed a baseline questionnaire, 88.6% completed a second questionnaire one month later and 75.4% six months later.

Results

Counseling intervention significantly increased the knowledge level of the individuals who received genetic education and significantly decreased the cancer worry levels. Persons with low perception of their cancer risk also had low worry levels. There were no significant changes over time in cancer risk perception or in quality of life.

Conclusion

Counseling in a high risk population seems to decrease cancer worry and to increase cancer knowledge thus enabling a counselee to take well-informed decisions. Furthermore, according to our results, such interventions do not increase anxiety and do not modify the quality of life, but do not adjust their cancer risk perception.

Practice implications

Providing individuals at increased risk of breast cancer genetic services seem to enhance their understanding of breast cancer without causing adverse psychological effects or changes in their quality of life, and it could improve their preventive behaviours.     

A multimedia patient education program on colorectal cancer screening increases knowledge and willingness to consider screening among Hispanic/Latino patients

Objective

To test a multimedia patient education program on colorectal cancer (CRC) screening that was designed specifically for the Hispanic/Latino community, and developed with input from community members.

Methods

A total of 270 Hispanic/Latino adults, age 50–80 years, participated in Spanish for all phases of this pretest–posttest design. Patients were randomly assigned to a version of the multimedia program that opened with either a positive or negative introductory appeal. Structured interviews assessed screening relevant knowledge (anatomy and key terms, screening options, and risk information), past screening behavior, willingness to consider screening options, intention to discuss CRC screening with the doctor, and reactions to the multimedia patient education program.

Results

The multimedia program significantly increased knowledge of anatomy and key terms (e.g., polyp), primary screening options (FOBT, flexible sigmoidoscopy, colonoscopy), and risk information as well as willingness to consider screening (p < .001 for all). No significant differences emerged between positive and negative introductory appeals on these measures, intention to discuss CRC screening with their doctor, or rating the multimedia program.

Conclusion

Multimedia tools developed with community input that are designed to present important health messages using graphics and audio can reach Hispanic/Latino adults across literacy levels and ethnic backgrounds. Additional research is needed to determine effects on actual screening behavior.

Practice implications

Despite promising results for engaging a difficult-to-reach audience, the multimedia program should not be considered a stand-alone intervention or a substitute for communication with physicians. Rather, it is a priming mechanism intended to prepare patients for productive discussions of CRC screening.     

Effectiveness of a computer tailored physical activity intervention in adolescents compared to a generic advice

Objective

To investigate the differences in effects of a computer tailored physical activity advice as compared to generic information in adolescents.

Methods

Students (mean age, 14.6 ± 1.2) out of 90 classes from six different Flemish schools were randomly assigned to the tailored intervention (n = 563) or the generic non-tailored intervention (n = 608) condition. Both interventions included information on public health recommendations and tips on becoming more active. Participants in both groups received their assessment and feedback at baseline, at 4 weeks and at 3 months during school hours. Physical activity levels were determined using an adolescent adaptation of the International Physical Activity Questionnaire (IPAQ).

Results

After 4 weeks, almost all physical activity scores increased over time in both the generic and the tailored intervention group. No differences between groups were found (all F ≤ 0.07). After 3 months, the generic intervention was more effective for increasing ‘walking in leisure time’ among students not complying with recommendations. For all other physical activity scores, no differences between groups were found (all F ≤ 2.3).

Conclusions

In contrast to the expectations, changes in physical activity scores did not differ between the tailored and the non-tailored intervention group. For most of the physical activity scores increases were found in both groups.     

The impact of an empowering Internet-based Breast Cancer Patient Pathway programme on breast cancer patients' knowledge: a randomised control trial

Objective

The aim of this study was to analyse the effect of Breast Cancer Patient Pathway program.

Methods

In one Finnish university hospital during 2008–10 newly diagnosed breast cancer patients were randomised to the intervention (n = 50) and the control groups (n = 48). The breast cancer patient's knowledge expectations and perception of received knowledge, knowledge, the source of information and satisfaction in received patient education were measured. Baseline and one year follow up data collection was conducted.

Results

No differences were found in knowledge expectations between the groups at baseline. Patients in the control group evaluated their perception of received knowledge to be higher and they were more satisfied with the patient education they received from the hospital staff. However, the Intervention group's knowledge level was higher. The most important source of information was the healthcare professionals in both groups.

Conclusion

The results of study indicate that when patient education increases, patients’ knowledge expectations increase as well, while their perceptions of received knowledge decrease. Future research is needed to examine the relationship between patients’ knowledge expectations and perception of received knowledge as patients’ knowledge level increases.

Practice implications

Patient education has to be individually adjusted, taking patients’ expectations into account.     

Belief in numbers: When and why women disbelieve tailored breast cancer risk statistics

Objective

To examine when and why women disbelieve tailored information about their risk of developing breast cancer.

Methods

690 women participated in an online program to learn about medications that can reduce the risk of breast cancer. The program presented tailored information about each woman's personal breast cancer risk. Half of women were told how their risk numbers were calculated, whereas the rest were not. Later, they were asked whether they believed that the program was personalized, and whether they believed their risk numbers. If a woman did not believe her risk numbers, she was asked to explain why.

Results

Beliefs that the program was personalized were enhanced by explaining the risk calculation methods in more detail. Nonetheless, nearly 20% of women did not believe their personalized risk numbers. The most common reason for rejecting the risk estimate was a belief that it did not fully account for personal and family history.

Conclusions

The benefits of tailored risk statistics may be attenuated by a tendency for people to be skeptical that these risk estimates apply to them personally.

Practice implications

Decision aids may provide risk information that is not accepted by patients, but addressing the patients’ personal circumstances may lead to greater acceptance.     

Audiovisual information affects informed choice and experience of information in antenatal Down syndrome screening--a randomized controlled trial

Objective

To evaluate the effects of an information film on making an informed choice regarding Down syndrome screening, and women's knowledge and experiences of information.

Methods

Randomized controlled trial including 184 women in the intervention group and 206 controls recruited from maternity units in Stockholm, Sweden. The intervention was an information film presented as a complement to written and verbal information. Data were collected via a questionnaire in gestational week 27. Three different measures were combined to measure informed choice: attitudes towards Down syndrome screening, knowledge about Down syndrome and Down syndrome screening, and uptake of CUB (combined ultrasound and biochemical screening).

Results

In the intervention group 71.5% made an informed choice versus 62.4% in the control group. Women in the intervention group had significantly increased knowledge, and to a greater extent than the control group, experienced the information as being sufficient, comprehensible, and correct.

Conclusions

An information film tended to increase the number of women who made an informed choice about Down syndrome screening. Participants were more satisfied with the information received.

Practice implications

Access to correct, nondirective, and sufficient information is essential when making a choice about prenatal diagnostics. It is essential with equivalent information to all women.     

Improving physician–patient communication about cancer pain with a tailored education-coaching intervention

Objective

This study examined the effect of a theoretically grounded, tailored education-coaching intervention to help patients more effectively discuss their pain-related questions, concerns, and preferences with physicians.

Methods

Grounded in social-cognitive and communication theory, a tailored education-coaching (TEC) intervention was developed to help patients learn pain management and communication skills. In a RCT, 148 cancer patients agreed to have their consultations audio-recorded and were assigned to the intervention or a control group. The recordings were used to code for patients’ questions, acts of assertiveness, and expressed concerns and to rate the quality of physicians’ communication.

Results

Patients in the TEC group discussed their pain concerns more than did patients in the control group. More active patients also had more baseline pain and interacted with physicians using participatory decision-making. Ratings of physicians’ information about pain were higher when patients talked more about their pain concerns.

Conclusions

The study demonstrates the efficacy of a theoretically grounded, coaching intervention to help cancer patients talk about pain control.

Practice implications

Coaching interventions can be effective resources for helping cancer patients communicate about their pain concerns if they are theoretically grounded, can be integrated within clinical routines, and lead to improve health outcomes.     

Effects of tailored knowledge enhancement on colorectal cancer screening preference across ethnic and language groups

Objective

Tailoring to psychological constructs (e.g. self-efficacy, readiness) motivates behavior change, but whether knowledge tailoring alone changes healthcare preferences – a precursor of behavior change in some studies – is unknown. We examined this issue in secondary analyses from a randomized controlled trial of a tailored colorectal cancer (CRC) screening intervention, stratified by ethnicity/language subgroups (Hispanic/Spanish, Hispanic/English, non-Hispanic/English).

Methods

Logistic regressions compared effects of a CRC screening knowledge-tailored intervention versus a non-tailored control on preferences for specific test options (fecal occult blood or colonoscopy), in the entire sample (N = 1164) and the three ethnicity/language subgroups.

Results

Pre-intervention, preferences for specific tests did not differ significantly between study groups (experimental, 64.5%; control 62.6%). Post-intervention, more experimental participants (78.6%) than control participants (67.7%) preferred specific tests (P < 0.001). Adjusting for pre-intervention preferences, more experimental group participants than control group participants preferred specific tests post-intervention [average marginal effect (AME) = 9.5%, 95% CI 5.3–13.6; P < 0.001]. AMEs were similar across ethnicity/language subgroups.

Conclusion

Knowledge tailoring increased preferences for specific CRC screening tests across ethnic and language groups.

Practice Implications

If the observed preference changes are found to translate into behavior changes, then knowledge tailoring alone may enhance healthy behaviors.     

Communicating side effect risks in a tamoxifen prophylaxis decision aid: The debiasing influence of pictographs

Objective

To experimentally test whether using pictographs (image matrices), incremental risk formats, and varied risk denominators would influence perceptions and comprehension of side effect risks in an online decision aid about prophylactic use of tamoxifen to prevent primary breast cancers.

Methods

We recruited 631 women with elevated breast cancer risk from two healthcare organizations. Participants saw tailored estimates of the risks of 5 side effects: endometrial cancer, blood clotting, cataracts, hormonal symptoms, and sexual problems. Presentation format was randomly varied in a three factor design: (A) risk information was displayed either in pictographs or numeric text; (B) presentations either reported total risks with and without tamoxifen or highlighted the incremental risk most relevant for decision making; and (C) risk estimates used 100 or 1000 person denominators. Primary outcome measures included risk perceptions and gist knowledge.

Results

Incremental risk formats consistently lowered perceived risk of side effects but resulted in low knowledge when displayed by numeric text only. Adding pictographs, however, produced significantly higher comprehension levels.

Conclusions

Pictographs make risk statistics easier to interpret, reducing biases associated with incremental risk presentations.

Practice implications

Including graphs in risk communications is essential to support an informed treatment decision-making process.     

Shared decision-making about colorectal cancer screening: A conceptual framework to guide research

Objective

To develop a conceptual framework to guide research on shared decision-making about colorectal cancer (CRC) screening among persons at average risk and their providers.

Methods

Based upon a comprehensive review of empirical literature and relevant theories, a conceptual framework was developed that incorporated patient characteristics, cultural beliefs, provider/health care system variables, health belief/knowledge/stage of adoption variables, and shared decision-making between patients and providers that may predict behavior. Relationships among concepts in the framework, shared decision-making process and outcomes, and CRC screening behavior were proposed. Directions for future research were presented.

Results

Many of the concepts in the proposed framework have been examined in prior research. However, these elements have not been combined previously to explain shared decision-making about CRC screening.

Conclusion

Research is needed to test the proposed relationships and hypotheses and to refine the framework.

Practice Implications

Findings from future research guided by the proposed framework may inform clinical practice to facilitate shared decision-making about CRC screening.     

Factors that influence Italian consumers' understanding of over-the-counter medicines and risk perception

Objective

To evaluate information needs for safe self-medication we explored the Italian consumers’ functional health literacy, specific knowledge and risk awareness about over-the-counter (OTC) medicines.

Methods

A survey was conducted in the health sections of six large super stores. Data were collected from a convenience sample of 1.206 adults aged 18 years and older through a self-administered questionnaire.

Results

Around 42% confused the concept of “contraindications” with that of “side effects” and were unable to calculate simple dosages. Most respondents were aware of the OTC general potential for side effects but 64.3% did not know that people with high blood pressure should use painkillers with cautions and 14.0% and 20.0% were unaware of the risks of long-term use of laxatives and nasal decongestants respectively. Higher total scores were obtained from women, highly educated people and those citing package leaflets as information sources.

Conclusion

The study, the first of this type in Italy, showed an incomplete awareness of several risk areas, with regard to drug interactions and misuse/abuse.

Practice implications

The results of this study were the basis of a following intervention plan tailored to the observed consumer needs and including information tools for customers and courses for the retail pharmacists.     

The effect of information about false negative and false positive rates on people's attitudes towards colorectal cancer screening using faecal occult blood testing (FOBt)

Objective

To examine the impact of numeric risk information about false negative (FN) and false positive (FP) rates in faecal occult blood testing (FOBt) on attitudes towards screening.

Methods

95 people aged 45–59, living in England, read 6 hypothetical vignettes presented online about the use of FOB testing to detect bowel cancer, in which information about FN and FP rates was systematically varied.

Results

Both verbal and numeric FN risk information reduced people's interest in screening compared with no FN information. Numeric FN risk information reduced people's perceptions of screening effectiveness and lowered perceived trust in the results of screening compared with both verbal FN information and no FN information. FP information did not affect attitudes towards FOB testing. There was limited evidence that FN information reduced interest and perceptions of screening effectiveness more in educated groups.

Conclusion

Numeric FN risk information decreased people's perceptions of screening effectiveness and trust in the results of screening but did not affect people's interest in screening anymore than verbal FN risk information.

Practice Implications

Numeric FN information could be added to patient information without affecting interest in screening, although this needs to be replicated in a larger, more representative sample.     

1 + 1 = 3? The systematic development of a theoretical and evidence-based tailored multimedia intervention to improve medication adherence

Objective

To describe the development of a theoretical and evidence-based tailored multimedia intervention to improve medication intake behavior in patients with inflammatory bowel disease (IBD). The intervention integrates interpersonal and technology-mediated strategies with the expectation that this will work synergistically.

Methods

The development followed the Medical Research Council's framework. Three literature reviews and three pre-tests among 84 IBD patients and eight nurses were conducted to guide the development of the intervention. A feasibility study was carried out among four nurses and 29 patients.

Results

The components include: (1) an online preparatory assessment (OPA); (2) tailored interpersonal communication; and (3) tailored text messaging. To support the development, the feasibility was tested. Results indicated that the OPA was comprehensive and could be a helpful tool for both patients and nurses to prepare for the consultation. The training was evaluated as being instructive and applicable with a mean mark of 8.5. Of the developed messages, 65.6% received positive evaluations and were used in the intervention.

Conclusion

By applying the framework, we were able to describe the logic behind the development of a tailored multimedia intervention to improve medication intake behavior.

Practice implications

This study could serve as a guide for the development of other health interventions.     

Adapting the coping in deliberation (CODE) framework: A multi-method approach in the context of familial ovarian cancer risk management

Objective

To test whether the coping in deliberation (CODE) framework can be adapted to a specific preference-sensitive medical decision: risk-reducing bilateral salpingo-oophorectomy (RRSO) in women at increased risk of ovarian cancer.

Methods

We performed a systematic literature search to identify issues important to women during deliberations about RRSO. Three focus groups with patients (most were pre-menopausal and untested for genetic mutations) and 11 interviews with health professionals were conducted to determine which issues mattered in the UK context. Data were used to adapt the generic CODE framework.

Results

The literature search yielded 49 relevant studies, which highlighted various issues and coping options important during deliberations, including mutation status, risks of surgery, family obligations, physician recommendation, peer support and reliable information sources. Consultations with UK stakeholders confirmed most of these factors as pertinent influences on deliberations. Questions in the generic framework were adapted to reflect the issues and coping options identified.

Conclusions

The generic CODE framework was readily adapted to a specific preference-sensitive medical decision, showing that deliberations and coping are linked during deliberations about RRSO.Practice Implications: Adapted versions of the CODE framework may be used to develop tailored decision support methods and materials in order to improve patient-centred care.     

Managing uncertainty about treatment decision making in early stage prostate cancer: A randomized clinical trial

Objective

The purpose of this study was to examine the effects of a theory-based decision-making uncertainty management intervention (DMUMI) providing newly diagnosed prostate cancer patients with information, communication skills and personally designed prompts.

Methods

A randomized clinical trial was conducted using a 3 × 2 design with intervention and control groups including both Caucasian and African-American men. General linear mixed models were used to compare intervention groups over time.

Results

Significant main effects for the treatment groups were found for uncertainty management (cancer knowledge, problem-solving, and patient–provider communication), medical communication competence, number and helpfulness of resources for information, and decisional regret.

Conclusion

The intervention was effective in uncertainty management for Caucasian and African-American men, specifically in preparing competent patients with improved knowledge, problem-solving skills, information resources, and communication skills. Using the Uncertainty in Illness Theory, specific skills were selected with a focus on the antecedents of uncertainty.

Practice implications

In the treatment decision-making context, patients and supportive others need information about disease, treatment options and side effects but they also need communication skills training prior to the treatment decision consultation.     

The HPV vaccine and the media: How has the topic been covered and what are the effects on knowledge about the virus and cervical cancer?

Objective

In June 2006, the first vaccine for HPV was approved by the FDA and media coverage about the topic increased significantly. This study sought to explore the nature of the coverage and whether knowledge about HPV was affected by it.

Methods

A content analysis, including 321 news stories from major newspapers, the AP wire and television news networks was conducted. A monthly RDD-recruited Internet survey with a national sample (n = 3323) was used to assess changes in population knowledge.

Results

Twenty-three percent of stories did not mention the sexually transmitted nature of the disease and 80% left out information about the need for continued cervical cancer screening after vaccination. Exposure to health-related media content was significantly associated with knowledge about HPV, even controlling for baseline knowledge (OR = 1.62, 95% CI = 1.12–2.35).

Conclusions

Changes in the volume of coverage over time were associated with knowledge about HPV, but the content analysis reveals that many of the stories were missing important information.

Practice implications

Clinicians must consider the potential media source patients are using for HPV-related information in order to correct inaccurate or incomplete information that could affect health behavior.     

Communicating risk of hereditary breast and ovarian cancer with an interactive decision support tool

Objective

Women with hereditary breast and ovarian cancer syndrome (HBOC) face a higher risk of earlier, more aggressive cancer. Because of HBOC's rarity, screening is recommended only for women with strong cancer family histories. However, most patients do not have accurate history available and struggle to understand genetic concepts.

Methods

Cancer in the Family, an online clinical decision support tool, calculated women's HBOC risk and promoted shared patient–provider decisions about screening. A pilot evaluation (n = 9 providers, n = 48 patients) assessed the tool's impact on knowledge, attitudes, and screening decisions. Patients used the tool before wellness exams and completed three surveys. Providers accessed the tool during exams, completed exam checklists, and completed four surveys.

Results

Patients entered complete family histories (67%), calculated personal risk (96%), and shared risk printouts with providers (65%). HBOC knowledge increased dramatically for patients and providers, and many patients (75%) perceived tool results as valid. The tool prompted patient–provider discussions about HBOC risk and cancer family history (88%).

Conclusions

The tool was effective in increasing knowledge, collecting family history, and sparking patient–provider discussions about HBOC screening.

Practice implications

Interactive tools can effectively communicate personalized risk and promote shared decisions, but they are not a substitute for patient–provider discussions.     

A randomised controlled trial of a pilot intervention to encourage early presentation of oral cancer in high risk groups

Objective

Prognosis for oral cancer is substantially improved when diagnosed early. This research aimed to evaluate an intervention to promote early presentation of oral cancer.

Methods

Participants were randomly assigned to a leaflet group (n = 42), a one-to-one group (n = 46) or a control group (n = 24). Participants in the leaflet group read a theory-based (Extended Self-Regulatory Model; Social Cognitive Theory) leaflet on how to spot oral cancer early. Those in the one-to-one group received a brief, interactional discussion on early presentation of oral cancer and were then asked to read the leaflet. Participants in the control group received no information about oral cancer.

Results

The leaflet and the one-to-one instruction led to more accurate knowledge of oral cancer, decreased anticipated delay, and increased understanding, likelihood and confidence to perform self-examination. Neither intervention raised participants’ anxiety. There were minimal differences between the two interventions, yet both were superior to the control group.

Conclusion

This piloting indicates the initial effectiveness of an brief intervention purposefully designed for people at risk of developing oral cancer.

Practice implication

A low cost intervention may be a useful tool to encourage early detection of oral cancer. This could be embedded into routine consultations or an early detection programme.     

Do women make an informed choice about participating in breast cancer screening? A survey among women invited for a first mammography screening examination

Objective

To determine the level of informed choice in women invited for breast cancer screening for the first time.

Methods

To determine the content of decision-relevant knowledge, 16 experts were asked to judge whether each of 51 topics represented essential information to enable informed choices. To assess the level of informed choices, a questionnaire was then sent to all 460 invited women in the south-western part of the Netherlands who turned 50 in August 2008.

Results

Of all 229 respondents, 95% were deemed to have sufficient knowledge as they answered at least 8 out of 13 items correctly. In 90% there was consistency between intention (not) to participate and attitude. As a result, 88% made an informed choice. Sixty-eight percent of women responded correctly on the item of over-diagnosis. Even if all non-respondents were assumed to have no knowledge, 50% of the total group invited to participate still had sufficient knowledge.

Conclusions

Women were deemed to have sufficient relevant knowledge of the benefits and harms if they answered at least half of the items correctly.

Practice implications

To further increase informed choices in breast cancer screening, information on some of the possible harms merits further attention.