Need for numbers: assessing cancer survivors' needs for personalized and generic statistical information.

BACKGROUND: Statistical information (e.g., on long-term survival or side effects) may be valuable for healthcare providers to share with their patients to facilitate shared decision making on treatment options. In this pre-registered study, we assessed cancer survivors' need for generic (population-based) versus personalized (tailored towards patient/tumor characteristics) statistical information after their diagnosis. We examined how information coping style, subjective numeracy, and anxiety levels of survivors relate to these needs and identified statistical need profiles. Additionally, we qualitatively explored survivors' considerations for (not) wanting statistical information. METHODS: Cancer survivors' need for statistics regarding incidence, survival, recurrence, side effects and quality of life were assessed with an online questionnaire. For each of these topics, survivors were asked to think back to their first cancer diagnosis and to indicate their need for generic and personalized statistics on a 4-point scale ('not at all'- 'very much'). Associations between information coping style, subjective numeracy, and anxiety with need for generic and personalized statistics were examined with Pearson's correlations. Statistical need profiles were identified using latent class analysis. Considerations for (not) wanting statistics were analyzed qualitatively. RESULTS: Overall, cancer survivors (n = 174) had a higher need for personalized than for generic statistics (p < .001, d = 0.74). Need for personalized statistics was associated with higher subjective numeracy (r = .29) and an information-seeking coping style (r = .41). Three statistical need profiles were identified (1) a strong need for both generic and personalized statistics (34%), (2) a stronger need for personalized than for generic statistics (55%), and (3) a little need for both generic and personalized statistics (11%). Considerations for wanting personalized cancer statistics ranged from feelings of being in control to making better informed decisions about treatment. Considerations for not wanting statistics related to negative experience with statistics and to the unpredictability of future events for individual patients. CONCLUSIONS: In light of the increased possibilities for using personalized statistics in clinical practice and decision aids, it appears that most cancer survivors want personalized statistical information during treatment decision-making. Subjective numeracy and information coping style seem important factors influencing this need. We encourage further development and implementation of data-driven personalized decision support technologies in oncological care to support patients in treatment decision making.

Health care use and remaining needs for support among women with breast cancer in the first 15 months after diagnosis: the role of the GP.

BACKGROUND: The number of women with breast cancer in general practice is rising. To address their needs and wishes for a referral, GPs might benefit from more insight into women's health care practices and need for additional support. OBJECTIVE: To examine the prevalence of health care use and remaining needs among women with breast cancer in the first 15 months after diagnosis. METHODS: In this multicentre, prospective, observational study women with breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved through chart reviews. The prevalence of types of health care used and remaining needs related to medical, psychosocial, paramedical and supplementary service care (such as home care), was examined with descriptive analyses. RESULTS: Seven hundred forty-six women completed both questionnaires. At both assessments patients reported that they had most frequent contact with medical and paramedical providers, independent of types of treatment received. Three to fifteen percent of the patients expressed a need for more support. Prominent needs included a wish for more frequent contact with a physiotherapist, a clinical geneticist and a psychologist. Patients also wanted more help for chores around the house, particularly in the early post-treatment phase. CONCLUSION: A small but relevant percentage of women with breast cancer report having unmet needs. GPs may need to be particularly watchful of their need for more support from specific providers. Future research into the necessity of structural needs assessment among cancer patients in general practice is warranted.

Risk factors of unmet needs among women with breast cancer in the post-treatment phase.

OBJECTIVE: Unmet health care needs require additional care resources to achieve optimal patient well-being. In this nationwide study we examined associations between a number of risk factors and unmet needs after treatment among women with breast cancer, while taking into account their health care practices. We expected that more care use would be associated with lower levels of unmet needs. METHODS: A multicenter, prospective, observational design was employed. Women with primary breast cancer completed questionnaires 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. Direct and indirect associations between sociodemographic and clinical risk factors, distress, care use, and unmet needs were investigated with structural equation modeling. RESULTS: Seven hundred forty-six participants completed both questionnaires (response rate 73.7%). The care services received were not negatively associated with the reported levels of unmet needs after treatment. Comorbidity was associated with higher physical and daily living needs. Higher age was associated with higher health system-related and informational needs. Having had chemotherapy and a mastectomy were associated with higher sexuality needs and breast cancer-specific issues, respectively. A higher level of distress was associated with higher levels of unmet need in all domains. CONCLUSIONS: Clinicians may use these results to timely identify which women are at risk of developing specific unmet needs after treatment. Evidence-based, cost-effective (online) interventions that target distress, the most influential risk factor, should be further implemented and disseminated among patients and clinicians.

Predictors of enduring clinical distress in women with breast cancer.

To date, little is known about enduring clinical distress as measured with the commonly used distress thermometer. We therefore used the distress thermometer to examine: (a) the prevalence of enduring clinical distress, distress-related problems, and subsequent wish for referral of women with breast cancer, and (b) sociodemographic, clinical, and psychosocial predictors of enduring clinical distress. The study had a multicenter, prospective, observational design. Patients with primary breast cancer completed a questionnaire at 6 and 15 months postdiagnosis. Medical data were retrieved from chart reviews. Enduring clinical distress was defined as heightened distress levels over time. The prevalence of enduring clinical distress, problems, and wish for referral was examined with descriptive analyses. Associations between predictors and enduring clinical distress were examined with multivariate analyses. One hundred sixty-four of 746 patients (22 %) reported having enduring clinical distress at 6 and 15 months postdiagnosis. Of these, 10 % wanted to be referred for care. Fatigue was the most frequently reported problem by patients with and without clinical distress, at both time points. Lack of muscle strength (OR = 1.82, 95 % CI 1.12-2.98), experience of a low level of life satisfaction (OR = 0.77, 95 % CI 0.67-0.89), more frequent cancer worry (OR = 1.40, 95 % CI 1.05-1.89), and neuroticism (OR = 1.09, 95 % CI 1.00-1.18) were predictors of enduring clinical distress. In conclusion, one in five women with breast cancer develops enduring clinical distress. Oncologists, nurse practitioners, and cancer nurses are advised to use single-item questions about distress and distress-related problems to ensure timely detection of high-risk patients. Providers should also routinely assess fatigue and its causes, as fatigue is the most frequently reported distress-related problem over time.

Don't forget the dentist: Dental care use and needs of women with breast cancer.

PURPOSE: Patients with breast cancer may develop dental problems due to treatment. We examined the prevalence of their dental care use and needs, compared the prevalence of use with that of the general population, and examined which factors predict patients' dental care use. METHODS: Patients with primary breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. The prevalence of dental care use and needs was examined with descriptive analyses. Associations between predictors and dental care use were examined with multivariate analyses. RESULTS: Twenty-one percent of 746 participants visited their dentist at least once in the past three months at 6 months, and 23% at 15 months post-diagnosis. The estimated percentage of women with at least one contact with their dentist in 12 months was low compared to the general female population (31.9% versus 79.5%). One to two percent of the respondents wanted more contact. Having dental care insurance (odds ratio 1.80; 95% CI, 1.08-3.00), chemotherapy (odds ratio 1.93; 95% CI, 1.21-3.06), and clinical distress 6 months post-diagnosis (odds ratio 2.53; 95% CI, 1.70-3.79) predicted use of dental care 9 months later. CONCLUSIONS: Up to 15 months post-diagnosis, breast cancer patients' dental care use is lower than warranted. Oncologists and cancer nurses are recommended to inform patients about dental risks, and to encourage them - particularly those without insurance - to visit their dentist. Occurrence of dental problems should be monitored, especially in patients who receive chemotherapy or who are clinically distressed.

Predictors of Health Care Use of Women with Breast Cancer: A Systematic Review.

The aim of this study was to identify predictors of health care use among women with breast cancer by conducting a systematic review. Potentially relevant studies were identified by searching the PubMed, EMBASE, PsycINFO, CINAHL, and Cochrane Library databases. Also, backward and forward citation searches were performed. Studies were selected if they addressed associations between (a) sociodemographic, enabling (e.g., income), clinical and health related, or psychosocial predictors, and (b) medical, psychosocial, or paramedical health care use of adult women with breast cancer. The health care types of interest were hospital utilization and provider visits. An evaluation of aggregated findings was performed to determine consistency of findings between studies. Sixteen studies were included in the review. Higher age, a more advanced cancer stage, more comorbid disorders, having a mastectomy, a lymph node dissection, and breast reconstruction were consistently associated with higher hospital utilization. None of the patient characteristics were consistently associated with medical, psychosocial, or paramedical health care use-but psychosocial or paramedical associations were also less examined. In conclusion, sociodemographic, medical, and treatment-related factors were consistently associated with (higher) health care use of breast cancer patients. Practitioners may use this information to anticipate future use of subgroups of patients. Results may also be used in the development of interventions that target relevant predictors, to reduce patients' health care use and accompanying health care costs. Furthermore, more research is needed to identify predictors of psychosocial and paramedical health care use.

Cancer in full-colour: use of a graphic novel to identify distress in women with breast cancer.

The graphic novel Cancer Vixen about breast cancer was used as an example to examine whether reading of graphic novels may enhance insight into illness experiences. Content analysis showed that the graphic novel depicts the full range of distress, by portraying practical, social, emotional, religious/spiritual and physical problems. Findings were illustrated with descriptions from the book. The results indicate that--from a content perspective--this graphic novel may be of value in medical education and health psychology settings to teach students and patients about the human side of being ill.

Complementary and alternative medicine use of women with breast cancer: self-help CAM attracts other women than guided CAM therapies.

OBJECTIVE: Examine stability of use of complementary and alternative medicine (CAM) of breast cancer patients, reasons for CAM use, and sociodemographic, clinical, and psychological predictors of CAM use. METHODS: CAM use was assessed after adjuvant therapy and six months later. Following the CAM Healthcare Model, CAM use was divided into use of provider-directed (guided) and self-directed (self-help) CAM. Stability and reasons for CAM use were examined with McNemar's tests and descriptive statistics. Cross-sectional and longitudinal associations between predictors and CAM use were examined with univariate and multivariate logistical analyses. RESULTS: Use of provider-directed and self-directed CAM was stable over time (N=176). Self-directed CAM was more often used to influence the course of cancer than provider-directed CAM. Both were used to influence well-being. Openness to experience predicted use of provider-directed CAM, while clinical distress predicted use of self-directed CAM, after adjusting for other predictors. Perceived control did not predict CAM use. CONCLUSION: CAM use is stable over time. It is meaningful to distinguish provider-directed from self-directed CAM. PRACTICE IMPLICATIONS: Providers are advised to plan a 'CAM-talk' before adjuvant therapy, and discuss patients' expectations about influence of CAM on the course of cancer. Distressed patients most likely need information about self-directed CAM.