Physicians’ decision-making style and psychosocial outcomes among cancer survivors

Objective

We evaluated pathways linking physicians’ decision-making style with cancer survivors’ health-related quality of life (HRQOL).

Methods

We analyzed survey data from 623 survivors diagnosed with leukemia, colorectal, or bladder cancer in Northern California, 2–5 years prior to the study. Of these, 395 reported making a medical decision in the past 12 months and were asked about their physician's decision-making style. We evaluated the association of physician style with proximal communication outcomes (trust and participation self-efficacy), intermediate cognitive outcomes (perceived control and uncertainty), and distal health outcomes (physical and mental HRQOL).

Results

Overall, 54% of survivors reported a sub-optimal decision-making style for their physician. With the exception of physical health, physician style was associated with all proximal, intermediate, and distal outcomes (p ≤ 0.01). We identified two significant pathways by which a participatory physician style may be associated with survivors’ mental health: (1) by increasing survivors’ participation self-efficacy and thereby enhancing their perceptions of personal control (p < 0.01); (2) by enhancing survivors’ level of trust and thereby reducing their perceptions of uncertainty (p < 0.05).

Conclusion

A participatory physician style may improve survivors’ mental health by a complex two-step mechanism of improving survivors’ proximal communication and intermediate cognitive outcomes.

Practice implications

Physicians who adopt a participatory decision-making style are likely to facilitate patient empowerment and enhance patients’ HRQOL.     

Effect of information seeking and avoidance behavior on self-rated health status among cancer survivors

Objective

Social determinants, such as socioeconomic status (SES) and race/ethnicity are linked to striking health disparities across the cancer continuum. One important mechanism linking social determinants and health disparities may be communication inequalities that are caused by differences in accessing, processing and utilizing cancer information. In this context, we examined health information-seeking/avoidance as a potential mediator between social determinants and self-rated health (SRH) status among cancer survivors.

Methods

Data came from the 2008 well-informed, thriving and surviving (WITS) study of post-treatment cancer survivors (n = 501). We examined the mediating effect of health communication-related behavior between SES and disparities in SRH.

Results

The likelihood of belonging to the Low SRH group was higher among patients who had avoided health information and whose family members had not sought health information on behalf of the survivor, those in the lowest household income bracket, and those who had high school or less education after adjusting for potential confounders.

Conclusion

Differences in SRH among cancer survivors are associated with SES as well as communication inequalities.

Practice implications

It is necessary to provide a supportive environment in which health information is made available if disparities in health-related quality of life among cancer survivors are to be reduced.     

The impact of a multimedia informational intervention on psychosocial adjustment among individuals with newly diagnosed breast or prostate cancer: A feasibility study

Objective

To examine the impact of an 8-week cancer multimedia informational intervention on health-related outcomes among individuals newly diagnosed with cancer.

Methods

Using a pre-/post-quasi-experimental design, participants with breast or prostate cancer (n = 250) were conveniently recruited from four oncology ambulatory clinics and completed questionnaires at three points (enrolment, 1–2 weeks post-intervention, and 3 months later).

Results

Repeated-measure analyses showed that, when compared to controls, the intervention significantly improved satisfaction with cancer information over time for women (p < .001), prevented deterioration in functional quality of life (p = .030) and marginally improved perceived oncologist informational support (p = .051). There were no significant differences in psychosocial adjustment among men. Unlike previously suggested, the intervention did not have a differential impact according to levels of personal resources (self-esteem, mastery, and optimism). However, for all outcomes and regardless of group, participants high in personal resources reported better adjustment across time.

Conclusion

Even though the hypotheses were only partially supported, the findings provide preliminary evidence that multimedia interventions can be supportive.

Practice implications

With increasing numbers of new cancer diagnoses, cancer survivors and more limited health care resources, further research is needed to evaluate potential benefits of health information technology in providing support to individuals facing cancer.     

A longitudinal study on engagement with dieting information as a predictor of dieting behavior among adults diagnosed with cancer

Objective

This study explores cancer survivors’ engagement with information about dieting to control weight from doctors, interpersonal, and media sources and examines whether engagement from these sources impacts subsequent dieting behavior.

Methods

A total of 1128 respondents diagnosed with colorectal, breast, or prostate cancers were surveyed over three years following their cancer diagnoses. Using weighted logistic regression analyses, the authors predicted the odds of dieting based on earlier information engagement with sources, controlling for dieting in the previous year and confounders.

Results

Participants reported talking with doctors more frequently (37%) than seeking or scanning from interpersonal and media sources about dieting (15–22%). Seeking from interpersonal and media sources, and discussion with physicians, significantly predicted dieting behavior. In addition, discussions with physicians increased the odds of subsequent dieting behavior by 2.32 times (95% CI: 1.50–3.61; p = .002), over and above the effects of other information engagement.

Conclusion

Cancer survivors reported engaging with a variety of information sources about dieting. Engagement with doctors and information-seeking from interpersonal or media sources predicted cancer survivors’ dieting behavior a year later.

Practice implications

The results may inform strategies to encourage and empower cancer survivors to engage with information about healthy lifestyle changes for promoting long-term health.     

Race and health-related quality of life in midlife women in Baltimore,Maryland

Objective

Only a few studies have examined the association between race/ethnicity and health-related quality of life (HRQOL) during midlife. Thus, the purpose of this study was to examine this association in the context of a population-based study of Caucasian and African-American women aged 45–54 years.

Methods

Data from 626 pre- and peri-menopausal African-American and Caucasian women aged 45–54 years were analyzed. HRQOL was measured using Cantril's Self-Anchoring Ladder of Life, a validated measure of overall life satisfaction. Body mass index was determined using measured height and weight. Information on race and other variables such as education was based on self-report. Logistic regression models were constructed to examine the unadjusted and adjusted associations between race and low present HRQOL (≤6 on Cantril's Ladder of Life).

Results

In both the unadjusted and adjusted analyses, race was not significantly associated with low present HRQOL (unadjusted OR 1.57; 95% CI 0.93, 2.65; adjusted OR 0.82; 95% CI 0.42, 1.61). In the fully adjusted model, only the number of menopausal symptoms and self-rated health were significantly associated with present HRQOL.

Conclusions

Findings from this population-based study suggest that race is not a statistically significant determinant of present HRQOL among midlife women.     

When the safety net of treatment has been removed: Patients’ unmet needs at the completion of treatment for haematological malignancies

Objective

To determine patients’ information, emotional and support needs at the completion of treatment for a haematological malignancy.

Methods

A self-report questionnaire was mailed to 113 adult patients.

Results

Sixty-six questionnaires were returned. The most frequently endorsed patient needs related to care co-ordination and help to manage the fear of recurrence. The most frequently endorsed unmet needs included managing the fear of recurrence, the need for a case-manager and the need for communication between treating doctors. Predictors of unmet needs included younger patients (p = 0.01), marital status (p = 0.03) and employment (p = 0.03). Almost two-thirds of patients (59%) reported they would have found it helpful to talk with a health care professional about their experience of diagnosis and treatment at the completion of treatment and endorsed significantly more need in the arenas of Quality of Life (p = 0.03) and Emotional and Relationships (p = 0.04).

Conclusion

This study provides valuable data on haematological cancer patients’ needs in the first 12 months of finishing treatment. It appears that many needs emerge or remain unresolved at this time.

Practice implications

An opportunity for patients to talk with a health professional about making the transition from active treatment to extended survivorship may be helpful.     

Consultation support for rural women with breast cancer: Results of a community-based participatory research study

Objective

This study asked: (1) What do rural women with breast cancer need to make the most out of their major medical appointments? and (2) What can the community resource centers do to best support those needs?

Methods

We interviewed 12 doctors, 12 breast cancer survivors and 10 community agency staff, including those who provide services to Latinos and Native Americans. Interviews generated success factors and barriers related to meeting patient information needs. Examples were categorized into themes.

Results

Success factors included making sure patients review high quality educational materials before the visit; and that someone is available to take notes. Doctors felt that a patient list of questions was productive, but some survivors felt doctors did not always respond productively to the list. Respondents did not mention audiorecording unless prompted. Most then endorsed it.

Conclusion

Educational materials, question lists, and note-takers can help rural women with breast cancer and their doctors achieve their goals during treatment discussions. Audiorecording may be an implicit but not explicit need.

Practice implications

Other cancer resource centers and support agencies should consider offering information, question-listing, and note-taking services. They should assess whether audiorecording is an implicit need in their settings.     

African American prostate cancer survivors’ treatment decision-making and quality of life

Objective

To examine African-American prostate cancer (PCa) survivors’ involvement in treatment decision-making (TDM), and examine the association between TDM and quality of life (QOL), using secondary data.

Methods

African-American PCa survivors (181) were recruited from the North Carolina Central Cancer Registry. Participants completed a cross-sectional survey that asked about their chosen cancer treatment, TDM factors, and PCa-specific QOL (using the Expanded Prostate Cancer Index Composite – EPIC). Multivariate analysis of covariance was conducted to determine the association between TDM and QOL, controlling for confounders.

Results

Most men reported being active (44.2%) or collaborative (38.1%) in TDM, while 14.4% preferred a passive role. Adjusting for marital status, education and treatment, passive patients reported somewhat better QOL compared to active patients in the following QOL domains: urinary summary (p = 0.04), urinary function (p = 0.01), and urinary incontinence (p = 0.03).

Conclusion

Most African-American PCa survivors preferred to be, and were, actively or collaboratively involved in TDM. However, those who preferred a passive role reported better PCa-specific QOL for the urinary domain compared to others.

Practice implications

It is important to assess patients’ TDM preference. Patients’ QOL may differ by their TDM role, such that active patients may be more bothered by treatment side effects than other patients.     

Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry

Objective

To evaluate perceived level of and satisfaction with information received by endometrial cancer survivors, and to identify associations with socio-demographic and clinical characteristics.

Methods

All patients diagnosed with endometrial cancer between 1998 and 2007, registered in the Eindhoven Cancer Registry, received a questionnaire including EORTC-QLQ-INFO25.

Results

Seventy-seven percent responded (n = 742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, radiotherapy, absence of comorbidities, having a partner, having received written information, and higher educational level were associated with higher perceived information receipt.

Conclusion

Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient.

Practice implications

More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.     

A comparison of health-related quality of life (HRQOL) after natural and surgical menopause

Objective

To compare the health-related quality of life (HRQOL) of women at surgical menopause with that of women at natural menopause, utilizing the Menopause Rating Scale (MRS-II).

Study design

An institution-based cross-sectional study design was used, with 32 participants in each of two groups: women who had undergone surgical menopause of 9–12 months previously; and women who were more than 40 years of age and had had oligomenorrhoea for at least 1 year. The MRS-II was used to assess HRQOL. None of the women had received any hormonal therapy before assessment.

Main outcome measures

Total MRS-II scores along with the scores on the somato-vegetative, psychological and urogenital sub-scales were compared between the two groups.

Results

HRQOL was rated as worse by the surgical menopause group than by the natural menopause group: the total MRS-II scores were much higher for the surgical menopause group (mean = 29.4, SD = 6.7) than for natural menopause group (mean = 20.7, SD = 6.5), and this difference was significant (p < 0.0001). Similar results were obtained on the three sub-scales—somato-vegetative (p = 0.030), psychological (p < 0.0001) and urogenital (p < 0.0001).

Conclusion

HRQOL is worse after surgical than in natural menopause. Routine surgical castration at hysterectomy should be avoided because of adverse short-term effects and, potentially, long-term consequences.     

‘What they’re not telling you’: A new scale to measure grandparents’ information needs when their grandchild has cancer

Objective

To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents’ information needs regarding their grandchild's cancer.

Methods

Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs.

Results

Eighty-seven grandparents participated (mean age 65.02 years, range 46–81, 31% male). Grandparents’ information needs were high, especially among young and paternal grandparents. Grandparents’ greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported “high need”), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents’ booklet, distributed at diagnosis and available online.

Conclusions

Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on ‘second-hand’ information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources.

Practice implications

Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.     

Disclosure of diagnosis and treatment among early stage prostate cancer survivors

Objective

Increased long-term survival rates have led to a greater focus on the health-related quality of life (HRQL) of prostate cancer survivors. This study assessed the motivations of prostate cancer survivors for disclosing their diagnosis and treatment to close others, and their perceptions of their own and others’ responses to the disclosure.

Methods

Prostate cancer survivors (N = 35) who were 24–36 months post-treatment for localized disease completed a semi-structured telephone interview. Open-ended questions concerning disclosure of men's diagnosis and treatment and their perceptions of their own and others’ reactions to the disclosure were included.

Results

Regarding men's motivations for disclosing their diagnosis and treatment, men reported that they were seeking social support (SS) and that others had a ‘right to know.’ Further, the receipt of emotional support and feeling a sense of positive emotions were common following disclosure about their diagnosis and treatment. Participants reported continuing to discuss their treatment side effects 2–3 years post-treatment.

Conclusion

Prostate cancer survivors reported an overall positive and supportive response following the disclosure of their diagnosis and treatment. Further examination of the relationship between SS and HRQL will be necessary to identify interventions to enhance the well-being of this growing population of survivors.

Practice implications

Providers need to be aware of the extent and long-term nature of the side effects following treatment for prostate cancer. If providers encourage men to talk about their diagnosis, treatment, and side effects, providers may better understand men's experience with the disease, and men may be more likely to accept these commonly experienced changes, as well as seek treatment for them. These efforts may result in improved quality of life for survivors of prostate cancer.     

Outcomes of online support and resources for cancer survivors: a systematic literature review

Objective

This study aims to review systematically the available literature on health outcomes of online cancer support and resources.

Methods

We searched major databases with the following selection criteria: (1) empirical study on use of online support or resources by cancer survivors, (2) reporting effects or outcomes of online support or resources, (3) focusing on adult cancer survivors, and (4) peer-reviewed articles published by 2010.

Results

A total of 24 studies (37 articles) were included in the review. Most studies were focused on breast cancer survivors and had small sample sizes. Fifteen studies employed a cross-sectional design including eight qualitative studies. Only five studies used pre-post design, and four employed RCT design. The outcome measures have focused on psychosocial effects; most studies reported positive effects, although none of the RCT studies reported significant outcomes.

Conclusion

Existing studies of online cancer support and resources have demonstrated preliminary but inconclusive evidence for positive outcomes. We call for additional studies with rigorous study designs and the inclusion of more diverse participants and cancer conditions.

Practice implications

Connecting diverse cancer survivors to culturally appropriate, evidence-based online support and resources is a strategy to enhance health outcomes.     

Older cancer patients’ information and communication needs: What they want is what they get?

Objective

To evaluate what information and communication aspects older cancer patients (≥65) consider important in preparing for chemotherapy treatment (CT), the extent to which this corresponds with what oncology nurses consider important, and the extent to which nurses attend to these aspects during real-life educational visits in oncology.

Methods

The QUOTE^chemo was used to have patients (n = 116) and nurses (n = 123) rate the importance of 66 aspects of patient education. Subsequently, the implementation of these 66 aspects during videotaped nursing visits (n = 155) with older cancer patients receiving CT for the first time was examined.

Results

Older cancer patients attached most importance to ‘treatment-related information’, ‘rehabilitation information’, ‘affective communication’ and discussing ‘realistic expectations’. Nurses placed great importance to almost all aspects except to discussing ‘realistic expectations’. Discrepancies were found between expressed importance and the actual performance during the videotaped consultations, particularly in discussing realistic expectations, coping information, interpersonal communication, and tailored communication.

Conclusion

Results pointed to aspects that need improvement to ensure high quality patient education tailored to the patients’ needs.

Practice implications

To make sure older cancer patients’ needs are met, more attention should be paid to the development of interventions supporting both needs assessment and fulfillment.     

Perception of cancer recurrence risk: More information is better

Objective

Breast cancer is the most common cancer among women worldwide. Given the advances in extending survival, the number of recently diagnosed breast cancer patients and longer-term breast cancer survivors is growing. The goals of this study were to better understand (1) perceptions of provider cancer recurrence risk communication, (2) perceived risk of breast cancer recurrence in cancer patients and survivors, and (3) accuracy of perceived risk.

Methods

A survey was conducted on women with a prior breast cancer (n = 141).

Results

Approximately 40% of women perceived that providers had not talked about their breast cancer recurrence risk; although only 1 person reported not wanting a physician to talk to her about her risk. Women were largely inaccurate in their assessments of risk. Greater worry, living in a rural area, and longer time since diagnosis were associated with greater inaccuracy. Women tended to think about distal recurrence of cancer as often of local recurrence.

Conclusions

Perceived risk of breast cancer recurrence was inaccurate, and patients desired more communication about recurrence risk.

Practice implications

Consistent with findings from other studies, greater efforts are needed to improve the communication of cancer recurrence risk to patients. Attention should be paid to those from rural areas and to distal cancer recurrence in women with a previous history of breast cancer.     

SAGE & THYME™: A model for training health and social care professionals in patient-focussed support

Objective

To develop a model for addressing the emotional concerns of patients or their caregivers; to teach the model in a three-hour workshop and to assess the impact of that training on a wide range of health and social care staff.

Methods

A multi-specialty team, including a cancer patient, developed a model based on the evidence relating to emotional support and communication skills. The model (SAGE & THYME™) consists of nine steps (see Box 1). The purpose of the model is to enable staff of all grades and roles to fulfil the most important objectives of support: enabling patients to describe their concerns and emotions if they wish to do so, holding and respecting those concerns; identifying the patients’ support structures; exploring the patients’ own ideas and solutions before offering advice or information. Over 800 health and social care staff of all grades and students have participated in the three-hour SAGE & THYME™ training workshops.

Results

Analysis from 412 participants suggests that the workshops had a significant positive effect on self-confidence (p < .0005), self-perception of competence (p < .0005) and willingness to explore the emotional concerns of patients (p < .0005). 95% felt that the workshop would be very likely to have an impact on their practice.

Conclusions

The workshops have been successful in increasing the self-perceptions of confidence, competence and willingness to explore the emotional concerns of patients. The model ‘SAGE & THYME™’ has been welcomed by participants.

Practice implications

Staff groups will require training for patients or their caregivers to have their concerns heard without interruption and to be allowed to explore their own resolutions. The three-hour SAGE & THYME™ training may go some way towards helping patients and staff form sound partnerships which assist patients to participate constructively in their own care.     

Knowledge, attitudes, and practice on second primary cancer screening among cancer survivors: a qualitative study

Objective

The goal of this study was to examine the knowledge, attitude, and practice on second cancer screening among cancer survivors.

Methods

Three focus group interviews were conducted with thirteen disease-free stomach, colorectal, breast and thyroid cancer survivors. Recurrent issues were identified and then placed into thematic categories.

Results

None of the study participants had heard SPC, and they could not differentiate SPC from ‘recurrence’ or ‘metastasis.’ Survivors believed that they had been cured, and they were not aware of their increased risk of SPC. Although they had high awareness of cancer screening, they could not make a distinction between ‘cancer screening’ and ‘routine surveillance test’ after cancer treatment. Survivors said that they would have had the screening for SPC if they had known about it. They preferred physicians as the most reliable source for screening information.

Conclusion

Cancer survivors had limited knowledge about SPC, and lack of information was the main barrier for SPC screening.

Practice implications

An educational intervention would help cancer survivors to understand their risk of SPC and the needs of screening after the first cancer.     

When cure is no option: How explicit and hopeful can information be given? A qualitative study in breast cancer

Objective

To investigate how oncologists can balance explicit with general and realistic with hopeful information when discussing various topics at the transition from curative to palliative care in breast cancer.

Methods

Qualitative analysis of focus groups consisting of female breast cancer survivors and healthy women.

Results

Perceptions of survivors and healthy women largely overlapped. Participants thought that oncologists can help patients regain a future perspective during this consultation. To achieve this, four themes seemed important: honest medical information, availability of continued support, hope has many faces, and space to choose. Moreover, participants stressed they would need time to let the message sink in before any further information was provided.

Conclusion

Participants thought that when confronted with this type of consultation they would need – more or less explicit – medical information and information regarding support. In order to maintain hope, knowledge about (treatment) possibilities is important, but also the certainty not to be abandoned by the hospital at a later stage of the disease and the confidence to remain able to make one's own decisions.

Practice implications

A life-limiting diagnosis may shatter patients’ future perspective; however, this study provides suggestions for oncologists to create a new perspective.     

The effects of two health information texts on patient recognition memory: A randomized controlled trial

Objective

To compare the effects of two health information texts on patient recognition memory, a key aspect of comprehension.

Methods

Randomized controlled trial (N = 60), comparing the effects of experimental and control colorectal cancer (CRC) screening texts on recognition memory, measured using a statement recognition test, accounting for response bias (score range −0.91 to 5.34). The experimental text had a lower Flesch–Kincaid reading grade level (7.4 versus 9.6), was more focused on addressing screening barriers, and employed more comparative tables than the control text.

Results

Recognition memory was higher in the experimental group (2.54 versus 1.09, t = −3.63, P = 0.001), including after adjustment for age, education, and health literacy (β = 0.42, 95% CI: 0.17, 0.68, P = 0.001), and in analyses limited to persons with college degrees (β = 0.52, 95% CI: 0.18, 0.86, P = 0.004) or no self-reported health literacy problems (β = 0.39, 95% CI: 0.07, 0.71, P = 0.02).

Conclusion

An experimental CRC screening text improved recognition memory, including among patients with high education and self-assessed health literacy.

Practice implications

CRC screening texts comparable to our experimental text may be warranted for all screening-eligible patients, if such texts improve screening uptake.