Medical treatment decision-making in rural cancer patients: A qualitative systematic review and meta-synthesis.

OBJECTIVE: Rural cancer patients have unique care needs which may impact upon treatment decision-making. Our aim was to conduct a qualitative systematic review and meta-synthesis to understand their perspectives and experiences of making treatment decisions. METHODS: A systematic search of MEDLINE, PsycINFO, CINAHL and RURAL was conducted for qualitative studies in rural cancer patients regarding treatment decision-making. Articles were screened for relevance, and data from the included articles were extracted and analysed using meta-thematic synthesis. RESULTS: Twelve studies were included, with 4 themes and 9 subthemes identified. Many studies reported patients were not given a choice regarding their treatment. Choice, if given, was influenced by personal factors such as finances, proximity to social supports, convenience, and their personal values. Patients were also influenced by the opinions of others and cultural norms. Finally, it was reported that patients made choices in the context of seeking the best possible medical care and the patient-clinician relationship. CONCLUSIONS: In the rural context, there are universal and unique factors that influence the treatment decisions of cancer patients. PRACTICAL IMPLICATIONS: Our findings are an important consideration for clinicians when engaging in shared decision-making, as well as for policymakers, to understand and accommodate the unique rural perspective.

Uncommon Anal Neoplasms.

Uncommon neoplasms of the anal canal are associated with significant diagnostic dilemma in clinical practice and a high index of suspicion and pathologic expertise is needed. The incidence is likely to increase, particularly of small, incidental lesions found because of use of more frequent colonoscopy and high-definition MRI. Generally treatment follows that of the same histologic subtype in other anatomic location. Surgical intervention is the cornerstone for cure in early/localized disease; however, removal of the anal canal is associated with significant morbidities and quality of life issues. A centralized global registry/database established under the auspices of the International Rare Care Initiative collaboration would be useful.

Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis.

PURPOSE: To identify preferences for the process of prognostic discussion among patients with incurable metastatic cancer and variables associated with those preferences. PATIENTS AND METHODS: One hundred twenty-six (58%) of 218 patients invited onto the study participated. Eligible patients were the consecutive metastatic cancer patients of 30 oncologists, who were diagnosed within 6 weeks to 6 months before recruitment, over 18 years of age, and without known mental illness. Patients completed a postal survey measuring patient preferences for the manner of delivery of prognostic information, including how doctors might instill hope. RESULTS: Ninety-eight percent of patients wanted their doctor to be realistic, provide an opportunity to ask questions, and acknowledge them as an individual when discussing prognosis. Doctor behaviors rated the most hope giving included offering the most up to date treatment (90%), appearing to know all there is to know about the patient's cancer (87%), and saying that pain will be controlled (87%). The majority of patients indicated that the doctor appearing to be nervous or uncomfortable (91%), giving the prognosis to the family first (87%), or using euphemisms (82%) would not facilitate hope. Factor analysis revealed six general styles and three hope factors; the most strongly endorsed styles were realism and individualized care and the expert/positive/collaborative approach. A range of demographic, psychological, and disease factors were associated with preferred general and hope-giving styles, including anxiety, information-seeking behavior, expected survival, and age. CONCLUSION: The majority of patients preferred a realistic and individualized approach from the cancer specialist and detailed information when discussing prognosis.

Cancer consultation preparation package: changing patients but not physicians is not enough.

PURPOSE: This study evaluated a cancer consultation preparation package (CCPP) designed to facilitate patient involvement in the oncology consultation. PATIENTS AND METHODS: A total of 164 cancer patients (67% response rate) were randomly assigned to receive the CCPP or a control booklet at least 48 hours before their first oncology appointment. The CCPP included a question prompt sheet, booklets on clinical decision making and patient rights, and an introduction to the clinic. The control booklet contained only the introduction to the clinic. Physicians were blinded to which intervention patients received. Patients completed questionnaires immediately after the consultation and 1 month later. Consultations were audiotaped, transcribed verbatim, and coded. RESULTS: All but one patient read the information. Before the consultation, intervention patients were significantly more anxious than were controls (mean, 42 v 38; P = .04); however anxiety was equivalent at follow-up. The CCPP was reported as being significantly more useful to family members than the control booklet (P = .004). Patients receiving the intervention asked significantly more questions (11 v seven questions; P = .005), tended to interrupt the physician more (1.01 v 0.71 interruptions; P = .08), and challenged information significantly more often (twice v once; P = .05). Patients receiving the CCPP were less likely to achieve their preferred decision making style (22%) than were controls (35%; P = .06). CONCLUSION: This CCPP influences patients' consultation behavior and does not increase anxiety in the long-term. However, this intervention, without physician endorsement, reduced the percentage of patients whose preferred involvement in decision making was achieved.

Cancer patient preferences for communication of prognosis in the metastatic setting.

PURPOSE: To identify preferences for and predictors of prognostic information among patients with incurable metastatic cancer. PATIENTS AND METHODS: One hundred twenty-six metastatic cancer patients seeing 30 oncologists at 12 outpatient clinics in New South Wales, Australia, participated in the study. Patients were diagnosed with incurable metastatic disease within 6 weeks to 6 months of recruitment. Patients completed a survey eliciting their preferences for prognostic information, including type, quantity, mode, and timing of presentation; anxiety and depression levels; and information and involvement preferences. RESULTS: More than 95% of patients wanted information about side effects, symptoms, and treatment options. The majority wanted to know longest survival time with treatment (85%), 5-year survival rates (80%), and average survival (81%). Words and numbers were preferred over pie charts or graphs. Fifty-nine percent (59%) wanted to discuss expected survival when first diagnosed with metastatic disease. Thirty-eight percent and 44% wanted to negotiate when expected survival and dying, respectively, were discussed. Patients with higher depression scores were more likely to want to know shortest time to live without treatment (P =.047) and average survival (P =.049). Lower depression levels were significantly associated with never wanting to discuss expected survival (P =.03). Patients with an expected survival of years were more likely to want to discuss life expectancy when first diagnosed with metastases (P =.02). CONCLUSION: Most metastatic cancer patients want detailed prognostic information but prefer to negotiate the extent, format, and timing of the information they receive from their oncologists.

Long-term review of a breast conservation series and patterns of care over 18 years.

BACKGROUND: Multiple randomized trials of breast conservation compared with mastectomy in early breast cancer have validated equivalence of survival. Overwhelmingly the standard management of breast conservation includes surgical removal of the tumour, axillary dissection, postoperative breast irradiation, and adjuvant systemic therapy as appropriate. The outcomes are reviewed of 832 women with early breast cancer treated by local resection and irradiation at Royal Prince Alfred Hospital over an 18 year period, with particular emphasis on the changing patterns of practice. METHODS: Between September 1978 and May 1996, 832 women with early stage breast cancer were treated with conservative surgery and radiation therapy. The changes in patient, tumour and treatment factors were analysed over this time period. The outcomes of local recurrence and survival were recorded. Trends in patterns of these variables were evaluated by dividing the 18 years accrual period into three consecutive periods (1978-1983, n = 28; 1984-1990, n = 392; 1991-1996, n = 412). RESULTS: At a median follow up of 76 months, the 5 and 10 year actuarial local recurrence rates were 4% and 6%, respectively. Half of the local recurrences were at the primary site. Young age, extensive intraduct carcinoma, oestrogen receptor (ER) status and extranodal spread were predictive of local recurrence on multivariate analysis. The 5 and 10 year overall survival rates were 88% and 73%, respectively. Actuarial 5 year local recurrence (4%, 6%, 2%) and survival (96%, 88%, 92%) rates varied little across the three time intervals. There was an increase in median age from 46 to 56 years over the accrual period, with no change in median primary tumour size (1.5 cm). There were significant histopathological improvements in reporting margin status and ER status. Surgically, the median number of axillary lymph nodes retrieved (14) did not alter significantly. With respect to adjuvant therapies, irradiation of lymph nodes regions decreased over time. The proportion of patients receiving adjuvant hormones or chemotherapy increased significantly (18%, 35%, 54%). CONCLUSIONS: The low local recurrence rate and high survival are consistent with published literature for early breast cancer. Changes in practice during the accrual period included improvements in histopathological reporting, a reduction in irradiation of lymph node regions, and an increase in the use of systemic therapy. These changes parallel international recommendations regarding the optimal management of early breast cancer.

Breast cancer survivors' supportive care needs 2-10 years after diagnosis.

GOALS OF THE WORK: A significant proportion of breast cancer patients experience psychosocial morbidity after treatment, although their longer-term outcomes and supportive care service needs have not been comprehensively documented. The aim of this study was to identify longer-term outcomes and supportive care needs in disease-free breast cancer survivors. MATERIALS AND METHODS: One hundred seventeen patients who had been diagnosed with breast cancer 2-10 years earlier completed questionnaires to assess psychosocial outcomes including supportive care needs, psychological distress, and quality of life (QoL). MAIN RESULTS: QoL and depression scores were consistent with community rates although anxiety scores were higher. Approximately two thirds of survivors reported at least one unmet need, most frequently concerning existential survivorship issues, thereby highlighting the unique needs of survivors. Years since diagnosis was not correlated with need levels. Survivors classified as clinically anxious reported over three times as many unmet needs and survivors classified as depressed reported over two and a half times as many unmet needs. Positive outcomes were frequently reported. CONCLUSIONS: The findings have direct clinical relevance: irrespective of years since diagnosis, comprehensive and extended supportive care services are required to identify breast cancer survivors in need of supportive care interventions and remediate high levels of anxiety.