Differences in Surgical Outcomes and Quality-of-Life Outcomes in Pelvic Exenteration Between Locally Advanced Versus Locally Recurrent Rectal Cancers.

BACKGROUND: Although pelvic exenteration remains the only curative option for locally advanced rectal cancer and locally recurrent rectal cancer, only limited evidence is available on the differences in surgical and quality-of-life outcomes between the two. OBJECTIVE: This study aimed to compare surgical outcomes and identify any differences or predictors of quality of life of patients with locally advanced rectal cancer and locally recurrent rectal cancer undergoing pelvic exenteration. DESIGN: This was a cohort study. SETTING: This study was conducted at Royal Prince Alfred Hospital, Sydney, Australia. PATIENTS: This study included patients with locally advanced rectal cancer and locally recurrent rectal cancer who underwent pelvic exenteration between July 2008 and March 2019. MAIN OUTCOME MEASURES: The main outcome measures included Short Form 36 version 2 and Functional Assessment of Cancer Therapy-Colorectal score. RESULTS: A total of 271 patients were included in this study. Locally advanced rectal cancer patients had higher rates of R0 resection ( p = 0.003), neoadjuvant chemoradiotherapy ( p < 0.001), and had greater median overall survival (75.1 vs. 45.8 months), although the latter was clinically but not statistically significant. There was a higher blood loss ( p < 0.001), longer length of stay ( p = 0.039), and longer operative time ( p = 0.002) in the locally recurrent rectal cancer group. This group also had a higher mean baseline physical component summary score and Functional Assessment of Cancer Therapy-Colorectal score; however, there were no significant differences in complications or quality-of-life outcomes between with the two groups at any time points postoperatively up to 12 months. LIMITATION: The study was from a specialized experienced center, which could limit its generalizability. CONCLUSIONS: Patients with locally recurrent rectal cancer tend to require a more extensive surgery with a longer operative time and more blood loss and longer recovery from surgery, but despite this, their quality of life is comparable to those with locally advanced rectal cancer. See Video Abstract at http://links.lww.com/DCR/B1000 . DIFERENCIAS EN LOS RESULTADOS QUIRRGICOS Y LOS RESULTADOS DE LA CALIDAD DE VIDA EN LA EXENTERACIN PLVICA ENTRE EL CNCER DE RECTO LOCALMENTE AVANZADO Y EL CNCER DE RECTO LOCALMENTE RECIDIVANTE: ANTECEDENTES:Aunque la exenteración pélvica sigue siendo la única opción curativa para el cáncer de recto localmente avanzado y el cáncer de recto localmente recurrente, solo hay evidencia limitada disponible sobre las diferencias en los resultados quirúrgicos y de calidad de vida entre los dos.OBJETIVO:Este estudio tuvo como objetivo comparar los resultados quirúrgicos e identificar cualquier diferencia o predictor de la calidad de vida de los pacientes con cáncer de recto localmente avanzado y cáncer de recto localmente recurrente sometidos a exenteración pélvica.DISEÑO:Este fue un estudio de cohorte.AJUSTE:Este estudio se realizó en el Royal Prince Alfred Hospital, Sydney, Australia.PACIENTES:Este estudio incluyó pacientes con cáncer de recto localmente avanzado y cáncer de recto localmente recurrente que se sometieron a exenteración pélvica entre julio de 2008 y marzo de 2019.PRINCIPALES MEDIDAS DE RESULTADO:Las principales medidas de resultado incluyeron el formulario corto 36 versión 2 y la puntuación de la evaluación funcional de la terapia del cáncer colorrectal.RESULTADOS:Un total de 271 pacientes fueron incluidos en este estudio. Los pacientes con cáncer de recto localmente avanzado tuvieron tasas más altas de resección R0 ( p = 0,003), quimiorradioterapia neoadyuvante ( p < 0,001) y una mediana de supervivencia general más alta (75,1 frente a 45,8 meses),a pesar de que esta última fue clínica pero no estadísticamente significativa. Hubo una mayor pérdida de sangre ( p < 0,001), una estancia más prolongada ( p = 0,039) y un tiempo operatorio más prolongado ( p = 0,002) en el grupo de cáncer de recto localmente recurrente. También tenían una puntuación de componente físico inicial media más alta y una puntuación de Evaluación funcional de la terapia del cáncer colorrectal; sin embargo, no hubo diferencias significativas en las complicaciones o los resultados de la calidad de vida entre los dos grupos en ningún momento después de la operación hasta los 12 meses.LIMITACIÓN:El estudio fue de un centro especializado con experiencia, lo que podría limitar su generalización.CONCLUSIONES:Los pacientes con cáncer de recto localmente recurrente tienden a requerir una cirugía más extensa con un tiempo operatorio más largo y más pérdida de sangre y una recuperación más prolongada de la cirugía, pero a pesar de esto, su calidad de vida es comparable a aquellos con cáncer de recto localmente avanzado. Consulte Video Resumen en http://links.lww.com/DCR/B1000 . (Traducción-Dr. Yolanda Colorado ).

Work: saviour or struggle? A qualitative study examining employment and finances in colorectal cancer survivors living with advanced cancer.

PURPOSE: Continuing employment or returning to work (RTW) as a cancer survivor can be meaningful and financially necessary, yet challenging. However, there is a lack of qualitative research on RTW experiences and financial wellbeing of people with advanced colorectal cancer (CRC-A). This study aimed to fill this gap. METHODS: Adults treated for CRC-A were recruited 0.5-2 years post-surgery (or post-diagnosis of CRC-A for palliative chemotherapy participants). Semi-structured telephone interviews, exploring RTW and finances, were subjected to framework analysis. Demographic, clinical, and quality of life data (FACT-C, Distress Thermometer, COST measure) were collected to characterise the sample and inform the framework analysis. RESULTS: Analysis of 38 interviews revealed five overarching themes: work as a struggle, work as my identity, work as my saviour, work as a financial necessity, and employer and colleague response. Many survivors with CRC-A desired to, and had the capacity to, continue work or RTW, yet faced unique challenges from compounded stigma of both cancer and toileting issues. Inability to RTW negatively impacted financial and psychosocial wellbeing. Workplace support was an important facilitator of RTW. CONCLUSION: For survivors with CRC-A, continuing or RTW is fraught with challenges, including physical functioning challenges, financial anxiety, and unsupportive workplace environments. Survivors require psychosocial, financial, and employer support to manage these difficulties. This paper recommends a multiprong approach, including education programmes (facilitated through workers' union groups, human resource institutions, and/or large consumer CRC groups) and policies, to support workers and for employers to understand the unique challenges of employees with CRC-A.

A qualitative exploration of the facilitators and barriers to early diagnosis and treatment of head and neck cancer: Perceptions of patients and carers.

OBJECTIVE: The objective of this study to explore experiences of patients and carers of the pathway to diagnosis and treatment of head and neck cancer (HNC), focusing on differences based on remoteness of residence. METHODS: Patients ≥6 months post-treatment completion, and their carers, were recruited. Semi-structured interviews, guided by the Model of Pathways to Treatment as the theoretical framework, were conducted to examine pathways to treatment of HNC and facilitators and barriers to early diagnosis and treatment. Thematic analysis with an iterative and data-driven approach was used to identify themes. RESULTS: A total of 39 patients and 17 carers participated in the interviews. Facilitators of timely diagnosis and treatment included a sense of urgency from health care professionals (HCPs), advocacy by the HCP or carers, and leveraging social capital. Distance to services, financial costs, and a perceived lack of emotional investment by HCPs arose as barriers to timely diagnosis and treatment. Participants were often able to rationalise that not all delays were negative, depending causes and expected impact on cancer management. CONCLUSION: The findings highlight the complex nature of factors facilitating and impeding early HNC diagnosis and treatment that may be targeted in interventions to support patients and meet important benchmarks for high-quality cancer care.

Geographic variation in referral practices for patients with suspected head and neck cancer: A survey of general practitioners using a clinical vignette.

INTRODUCTION: General practitioners (GPs) play a crucial role in cancer care and GPs are often the first doctor that patients with symptoms suggestive of cancer will encounter. Head and neck cancer (HNC) is a relatively uncommon presentation in primary care, and evidence suggests that times to diagnosis and treatment of HNC vary based on geographical location of patients. This may be due to barriers to referral faced by regional or rural GPs as compared to those in metropolitan cities in Australia. OBJECTIVE: To investigate the effect of geographical location of GPs on management of patients with symptoms suggestive of HNC. DESIGN: This was a descriptive, analytical, cross-sectional survey. Surveys were sent to GPs at practices in two primary health care networks in New South Wales, Australia (Mid North Coast Primary Healthcare Network and the Central and Eastern Sydney Primary Healthcare Network) between February and May 2020. Main outcome measures were perceived time from referral to specialist appointment, factors affecting timeliness of patient help-seeking, and awareness and use of clinical guidelines. FINDINGS: A total of 1803 GPs were sampled, of which 196 responded (45 regional GPs and 151 metropolitan GPs). Less than half (48%) of regional GPs reported patients could expect to be seen by a specialist within 2 weeks of referral, compared to 70% of metropolitan GPs (p = 0.001). Most metropolitan GPs stated they would refer a patient with suspected HNC to a surgeon subspecialising in HNC. Regional GPs were split between ear, nose, and throat (ENT) and general surgeons. Availability of services was the most common factor influencing referral practices for regional GPs, whereas for metropolitan GPs, this was the patient's symptoms. Awareness of government resources for cancer referrals was generally low. DISCUSSION: Regional GPs report patients with HNC are less likely to be seen by a specialist within optimal time frames compared to metropolitan GPs. Respondents reported different barriers to early referral of patients with suspected HNC, with regional GPs more often citing system-level factors while metropolitan GPs more often cited patient-level factors. CONCLUSION: Evaluating service provision and uptake with respect to community need, and addressing of barriers to implementation, may minimise unwarranted clinical variation.

Fear of Cancer Progression and Death Anxiety in Survivors of Advanced Colorectal Cancer: A Qualitative Study Exploring Coping Strategies and Quality of Life.

This study aimed to examine coping strategies used by advanced colorectal cancer (CRC-A) survivors to manage death anxiety and fear of cancer progression, and links between these strategies and quality of life (QoL), distress, and death acceptance. Qualitative semi-structured interviews of 38 CRC-A survivors (22 female) were analysed via framework analysis. QoL and distress were assessed through the FACT-C and Distress Thermometer. Eleven themes were identified and mapped to active avoidance (keeping busy and distracted), passive avoidance (hoping for a cure), active confrontation (managing negative emotions; reaching out to others; focusing on the present; staying resilient), meaning-making (redefining one's identity; contributing to society; gaining perspective; remaining spiritual), and acceptance (accepting one's situation). Active confrontation (specifically utilising informal support networks) and meaning-making appeared beneficial coping strategies; more research is needed to develop and evaluate interventions which increase CRC-A survivors' use of these strategies to manage and cope with their death anxiety.

Colorectal cancer survivorship: A systematic review and thematic synthesis of qualitative research.

INTRODUCTION: With rapid changes in treatments for colorectal cancer (CRC), qualitative research into CRC survivorship requires greater synthesis. This paper aims to fill this gap through a systematic review (PROSPERO CRD42019131576) and thematic synthesis of the qualitative literature on survivorship experiences across early-stage and advanced CRC survivors. METHODS: CINAHL, Embase, MEDLINE, PsycINFO and PubMed were searched for qualitative CRC survivorship papers. Titles, abstracts and full texts were screened. Included articles (n = 81) underwent data extraction, CASP qualitative bias ratings and thematic synthesis. RESULTS: Bowel dysfunction caused functional limitations and negative quality of life (QoL), while stomas posed threats to body image and confidence. Physical symptoms hindered return to work, increasing financial burdens. Survivors' unmet needs included information regarding symptom expectations and management, and ongoing support throughout recovery. Advanced and early-stage survivors shared similar experiences. Advanced survivors struggled with fear of cancer recurrence/progression and feelings of powerlessness. Functional limitations, financial impacts and sexuality in advanced survivors were underexplored areas. CONCLUSION: CRC and its treatments impact survivors' QoL in all areas. A coordinated supportive care response is required to address survivors' unmet needs. Future qualitative studies should explore advanced CRC subpopulations, treatment-specific impacts on QoL and long-term (>5 years) impacts on CRC survivors.

Do ethnic patients report longer lung cancer intervals than Anglo-Australian patients?: Findings from a prospective, observational cohort study.

OBJECTIVE: Lung cancer patients from ethnic minorities have poorer outcomes than their Caucasian counterparts. We compared lung cancer intervals between culturally and linguistically diverse (CALD) and Anglo-Australian patients to identify ethnic disparities. METHODS: This was a prospective, observational cohort study comprising a patient survey and reviews of patients' hospital and general practice records. Across three states, 577 (407 Anglo-Australian and 170 CALD) patients were recruited and their hospital records reviewed. The survey was returned by 189 (135 Anglo-Australian and 54 CALD) patients, and a review was completed by general practitioners (GPs) of 99 (76 Anglo-Australian and 23 CALD) patients. Survival and Cox regression analyses were conducted. RESULTS: CALD patients had longer hospital diagnostic interval [median 30 days, 95% confidence interval (CI) 26-34] than Anglo-Australian patients (median 17, 95% CI 14-20), p = 0.005, hazard ratio (HR) = 1.32 (95% CI 1.09-1.60). This difference persisted after relevant factors were taken into consideration, adjusted HR = 1.26 (95% CI 1.03-1.54, p = 0.022). CALD patients also reported longer prehospital intervals; however, these differences were not statistically significant. CONCLUSION: Target interventions need to be developed to address ethnic disparity in hospital diagnostic interval.

Complications and Impact on Quality of Life of Vertical Rectus Abdominis Myocutaneous Flaps for Reconstruction in Pelvic Exenteration Surgery.

BACKGROUND: Pelvic exenteration for malignancy sometimes necessitates flap reconstruction. OBJECTIVE: This study's aim was to investigate flap-related morbidity. DESIGN: A prospective database was reviewed from 2003 to 2016. All medical charts, correspondence, and outpatient follow-up records up to May 2017 were reviewed. SETTINGS: This study was conducted at a tertiary referral unit. PATIENTS: Patients who underwent pelvic exenteration surgery were selected. INTERVENTIONS: Reconstruction was performed with a vertical rectus abdominis myocutaneous flap. MAIN OUTCOME MEASURES: Primary outcome was flap-related complications (short or long term >3 months). Secondary outcomes were hospital stay, readmission, mortality, and quality of life (Short Form-36, Functional Assessment of Cancer Therapy for patients with colorectal cancer). RESULTS: Of 519 patients undergoing pelvic exenteration surgery, 87 (17%) underwent flap reconstruction. Median follow-up was 20 months (interquartile range, 8-39 months). Median age was 60 years (interquartile range, 51-66). Flap-related complications were found in 59 patients (68%), with minor recipient-site complications diagnosed in 33 patients (38%). In the short term, 15 patients experienced major recipient-site complications (17%), including flap separation (n = 7) and partial (n = 3) or complete necrosis (n = 4). Flap removal was required in 1 patient. Obesity was the single independent risk factor for short-term flap-related complications (p = 0.02). Hospital admission was significantly longer in patients with short-term major flap complications (median 65 days, p < 0.001) compared with patients without or with minor complications. There was no 90-day mortality. Patients who required flap reconstruction reported lower baseline quality-of-life scores than patients without flap reconstruction, but both recovered over time. In the long term, minor flap-related complications occurred in 12 patients, and 11 patients had major donor-site complications. Fourteen patients developed major recipient-site complications (16%), including sacral collections, enterocutaneous fistulas, perineal ulcer, or hernia. LIMITATIONS: This was a retrospective analysis of prospectively collected data. CONCLUSIONS: Vertical rectus abdominis myocutaneous flaps in pelvic exenteration surgery have a high incidence of morbidity that has significant impact on hospital stay and a temporary impact on quality of life. Flap reconstruction should be used selectively in pelvic exenteration surgery. See Video Abstract at http://links.lww.com/DCR/B274. COMPLICACIONES E IMPACTO EN LA CALIDAD DE VIDA DE LOS COLGAJOS MIOCUTÁNEOS DE MUSCULO RECTO DEL ABDOMEN EN CASOS DE RECONSTRUCCIÓN DE EXENTERACIÓN PÉLVICA: La exenteración pélvica (EP) para malignidad a veces requiere reconstrucción con colgajos musculares.El propósito del presente estudio fue investigar la morbilidad relacionada con los colagajos musculares.Revisión de una base de datos prospectiva de 2003-2016. Se evaluaron todas las historias clínicas, la correspondencia y los registros de seguimiento de pacientes ambulatorios hasta mayo de 2017.Unidad de referencia terciaria.Todos aquellas personas con cirugía de exenteración pélvica.Reconstrucción con colgajo miocutáneo de musculo recto vertical del abdomen.El resultado primario fueron las complicaciones relacionadas con el colgajo (a corto o largo plazo >3 meses). Los resultados secundarios fueron la estadía hospitalaria, la readmisión, la mortalidad y la calidad de vida (QOL; SF-36, FACT-C).De 519 pacientes sometidos a EP, 87 (17%) se sometieron a reconstrucción con colgajos miocutáneos. La mediana de seguimiento fue de 20 meses (RIC 8-39 meses). La mediana de edad fue de 60 años (IQR 51-66). Se encontraron complicaciones relacionadas con el colgajo en 59 pacientes (68%), con complicaciones menores en el sitio del receptor diagnosticadas en 33 pacientes (38%). A corto plazo, quince pacientes sufrieron complicaciones mayores en el sitio del receptor (17%), incluida la separación del colgajo (n = 7), necrosis parcial (n = 3) o necrosis completa (n = 4). Se requirió la extracción del colgajo en un paciente. La obesidad fue el único factor de riesgo independiente para complicaciones relacionadas con el colgajo a corto plazo (p = 0.02). El ingreso hospitalario fue significativamente mayor en pacientes con complicaciones de colgajos mayores a corto plazo (mediana 65 días p <0.001) en comparación con pacientes sin complicaciones menores o con complicaciones menores. No hubo mortalidad a los 90 días. Los pacientes que requirieron reconstrucción con colgajo informaron puntajes de calidad de vida basales más bajos que los pacientes sin reconstrucción con colgajo, pero ambos se recuperaron con el tiempo. A largo plazo, ocurrieron complicaciones menores relacionadas con el colgajo en 12 pacientes y 11 pacientes tuvieron complicaciones mayores en el sitio donante. Catorce pacientes desarrollaron complicaciones mayores en el sitio del receptor (16%), incluidas colecciones sacras, fístulas enterocutáneas, úlceras perineales o herniación.Análisis retrospectivo de datos recolectados prospectivamente.Los colgajos miocutáneos del musculo recto vertical del abdomen en casos de cirugía de exenteración pélvica tienen una alta incidencia de morbilidad conllevando a un impacto significativo en la estadía hospitalaria y un impacto temporal en la calidad de vida. Las reconstrucciones con colgajos deben aplicarse muy selectivamente en la cirugía de exenteración pélvica. Consulte Video Resumen en http://links.lww.com/DCR/B274.

Preliminary evidence for physical activity following pelvic exenteration: a pilot longitudinal cohort study.

BACKGROUND: The physical activity (PA) level of patients undergoing major cancer surgery remains unclear. This pilot study aimed to: (i) Compare preoperative PA level between patients undergoing major cancer surgery and the general population; (ii) describe PA trajectories following major cancer surgery; (iii) Compare objective versus subjective PA measures in patients undergoing major cancer surgery; and (iv) Investigate the association between preoperative PA level and postoperative outcomes. METHODS: Patients undergoing pelvic exenteration between September/2016 and September/2017 were included and followed at preoperative, 6-weeks and 6-months postoperative. PA was measured using the International Physical Activity Questionnaire Short-Form and McRoberts activity monitor. Analyses were performed using SPSS. RESULTS: This pilot study included 16 patients. When compared to the general population, patients undergoing major cancer surgery presented a reduced preoperative PA level. PA levels decreased at 6 weeks but returned to preoperative levels at 6 months postoperative. Objective and subjective measures of PA were comparable, with some variables presenting strong correlations. A higher preoperative level PA was associated with an absence of postoperative complications and better quality of life outcomes. CONCLUSIONS: Patients undergoing major cancer surgery demonstrated lower PA levels when compared to the general population. PA trajectories decreased at 6 weeks postoperative, returning to preoperative levels within 6-months. In this cohort, it seems that higher preoperative PA level may improve postoperative surgical outcomes; however, this preliminary evidence should be confirmed in a larger cohort.

Health literacy and cancer care coordination in Chinese migrant patients and their carers: A cross-sectional survey.

OBJECTIVES: This study aimed to describe the levels of health literacy and experience of care coordination among Chinese migrant patients with cancer and their carers in Australia, and to examine factors associated with these. METHODS: Patients' self-reported data were collected using the Health Literacy and Cancer Care Coordination questionnaires. We conducted multivariate linear regression analyses to investigate predictors of patients' health literacy and their care experience. Canonical correlation analysis was used to examine the relationship between patients' health literacy and their care experience. RESULTS: A total of 68 patients and eight carers participated in the survey. Patients and carers reported similar levels of health literacy, with the lowest scores being in the "Having sufficient information to manage health" and "Navigating the health system" subscales. Gender (P = 0.026, partial η2  = 0.281) and educational attainment (P = 0.015, partial η2  = 0.250) had significant and large effects on patients' health literacy, after controlling for each other. Educational attainment showed a significant and medium association with patients' experience of cancer care coordination (P = 0.041, partial η2  = 0.101). A large and positive correlation was found between patients' health literacy and experience of cancer care coordination (canonical correlation = 0.81). CONCLUSIONS: Our findings reveal the health literacy and care coordination needs of Chinese migrant patients with cancer in Australia, especially those with lower educational attainment. Future efforts are necessary to enhance Chinese migrants' health literacy and establish an accessible and easy-to-navigate care environment.

Patients' experience of lung cancer care coordination: a quantitative exploration.

PURPOSE: Improving the coordination of care for people with lung cancer is a health priority. This study aimed to tailor an existing care coordination survey for a lung cancer population, investigate coordination experiences for patients who had received hospital-based treatment and identify any factors that may be associated with poor care coordination. METHODS: We conducted a cross-sectional survey of lung patients within two tertiary hospitals in Sydney, Australia. The Cancer Care Coordination Questionnaire for Patients (CCCQ-P) is a psychometrically valid and reliable survey originally developed for colorectal cancer. We pilot tested a survey adaptation with lung cancer patients, support group members and medical specialists (n = 49). A revised survey was mailed to eligible patients via their medical specialist. RESULTS: Fifty-three of 118 eligible participants (45%) completed the CCCQ-P; most had early-stage disease and were about 70 years old. Overall, participants reported positive experiences of care coordination (mean total score 78.1), with high scores on communication and navigation subscales. The most problematic areas related to administrative aspects of care coordination and communication and information provision. Two patient groups (those residing in regional and rural areas, or no experience with the health system prior to diagnosis) reported significantly lower scores on the navigation subscale. CONCLUSIONS: This study found that lung cancer patients' experience of care coordination was positive, but highlighted the need for strategies to assist patients living in rural areas, and those with no experience of the health care system. The CCCQ-P survey instrument can be used in future lung cancer studies.

Patterns of follow up and survivorship care for people with colorectal cancer in new South Wales, Australia: a population-based survey.

BACKGROUND: The incidence and survival rates for colorectal cancer in Australia are among the highest in the world. With population growth and ageing there are increasing numbers of colorectal cancer survivors in the community, yet little is known of their ongoing follow up and survivorship care experiences. This study investigated patterns and predictors of follow up and survivorship care received and recommended for adults with colorectal cancer in New South Wales (NSW), Australia. METHODS: Cross-sectional analysis within the NSW Bowel Cancer Care Survey, a population-based cohort of adults diagnosed with colorectal cancer between April 2012 and May 2013 in NSW. One year after diagnosis, participants completed a study specific questionnaire about their follow up and survivorship care experience and plans. Logistic regression was used to identify independent predictors of guideline-recommended care. RESULTS: Of 1007 eligible people, 560 (56%) participated in the NSW Bowel Cancer Care Survey with 483 (86% of study participants, 48% of invited sample) completing the survivorship survey. Among these 483 participants, only 110 (23%, 95% Confidence Interval CI 19-27%) had received a written follow up plan, with this more common among migrants, non-urban dwellers and those with little experience of the health system. Of 379 (78%) people treated with curative intent, most were receiving ongoing colorectal cancer follow up from multiple providers with 28% (23-32%) attending three or more different doctors. However, less than half had received guideline-recommended follow-up colonoscopy (46%, CI 41-51%) or carcino-embryonic antigen assay (35%, CI 30-40%). Socio-economic advantage was associated with receipt of guideline-recommended care. While participants reported high interest in improving general health and lifestyle since their cancer diagnosis, few had received advice about screening for other cancers (24%, CI 19-28%) or assistance with lifestyle modification (30%, CI 26-34%). Less than half (47%, CI 43-52%) had discussed their family's risk of cancer with a doctor since their diagnosis. CONCLUSIONS: Survivorship care was highly variable, with evident socioeconomic disparities and missed opportunities for health promotion.

The LEAD study protocol: a mixed-method cohort study evaluating the lung cancer diagnostic and pre-treatment pathways of patients from Culturally and Linguistically Diverse (CALD) backgrounds compared to patients from Anglo-Australian backgrounds.

BACKGROUND: Lung cancer is the leading cause of cancer mortality worldwide. Early diagnosis and treatment is a key factor in reducing mortality and improving patient outcomes. To achieve this, it is important to understand the diagnostic pathways of cancer patients. Patients from Culturally and Linguistically Diverse (CALD) are a vulnerable group for lung cancer with higher mortality rates than Caucasian patients. The aim of this study is to explore differences in the lung cancer diagnostic pathways between CALD and Anglo-Australian patients and factors underlying these differences. METHODS: This is a prospective, observational cohort study using a mixed-method approach. Quantitative data regarding time intervals in the lung cancer diagnostic pathways will be gathered via patient surveys, General practitioner (GP) review of general practice records, and case-note analysis of hospital records. Qualitative data will be gathered via structured interviews with lung cancer patients, GPs, and hospital specialists. The study will be conducted in five study sites across three states in Australia. Anglo-Australian patients and patients from five CALD groups (i.e., Arabic, Chinese, Greek, Italian and Vietnamese communities) will mainly be identified through the list of new cases presented at lung multidisciplinary team meetings. For the quantitative component, it is anticipated that 724 patients (362 Anglo-Australian and 362 CALD patients) will be recruited to obtain a final sample of 290 (145 per group) assuming a 50% patient survey completion rate and a 80% GP record review completion rate. For the qualitative component, 60 interviews with lung cancer patients (10 Anglo-Australian and 10 patients per CALD group), 20 interviews with GPs, and 20 interviews with specialists will be conducted. DISCUSSION: This is the first Australian study to compare the time intervals along the lung cancer diagnostic pathway between CALD and Anglo-Australian patients. The study will also explore the underlying patient, healthcare provider, and health system factors that influence the time intervals in the two groups. This information will improve our understanding of the effect of ethnicity on health outcomes among lung cancer patients and will inform future interventions aimed at early diagnosis and treatment for lung cancer, particularly patients from CALD backgrounds. TRIAL REGISTRATION: The project was retrospectively registered with Australian New Zealand Clinical Trials Registry (registration number: ACTRN12617000957392 , date registered: 4th July 2017).

Association between pancreatic cancer patients' perception of their care coordination and patient-reported and survival outcomes.

OBJECTIVE: People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancer patients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival. METHODS: People with pancreatic cancer who were 1-8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected. RESULTS: In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group. SIGNIFICANCE OF RESULTS: Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.

Patterns and predictors of colorectal cancer care coordination: A population-based survey of Australian patients.

BACKGROUND: Improving care coordination is a key priority for health services. The aims of this study were to identify patient- and health service-related predictors of poorly coordinated care and to explore patient preferences to assist care coordination. METHODS: Patients with incident colorectal cancer, identified from a state-wide cancer registry, completed a self-report questionnaire 6 to 8 months after their diagnosis. Care coordination was assessed with the Cancer Care Coordination Questionnaire for Patients. Multiple linear regression models were used to predict factors associated with a poor experience with cancer care coordination. RESULTS: Among 560 patients (56% response rate), care coordination experiences were normally distributed (mean score, 76.1; standard deviation, 10.9). Patients who had 3 or more comorbid conditions (ß, -4.56; standard error [SE], 1.46; P = .006), little or no understanding of the health system (ß, -4.34; SE, 0.94; P < .001), and no regular general practitioner (GP; ß, -4.09; SE, 2.07; P = .049) experienced poorer care coordination. At the health service level, patients who did not receive a written pretreatment plan (ß, -4.15; SE, 0.95; P < .001) or did not see a cancer care coordinator (ß, -3.29; SE, 1.03; P = .001) had lower scores. The most preferred resources included information packs (92%), written care plans (88%), and improved access to their own personal medical records (electronic, 86; paper, 84%), with most patients preferring a shared GP and surgeon care model. CONCLUSIONS: There was wide variation in experiences across the state. The factors associated with lower scores provide a focus for targeted strategies for improving patients' experience with colorectal cancer care coordination. Cancer 2017;123:319-326. © 2016 American Cancer Society.

The Evolution of Pelvic Exenteration Practice at a Single Center: Lessons Learned from over 500 Cases.

Considerable progress has been made in the management of patients with locally advanced or recurrent cancers of the pelvis over the past 60 years since the inception of pelvic exenteration. Early progress in pelvic exenteration was marred by the high surgical mortality and morbidity, which drew scepticism from the broader surgical community. Subsequent evolution in the procedure hinged on establishing surgical safety and a better understanding of outcome predictors. Surgical mortality from pelvic exenteration is now comparable to that of elective resection for primary colorectal cancers. The importance of a clear resection margin is also now well established in providing durable local control and predicting long-term survival that, in turn, has driven the development of novel surgical techniques for pelvic side wall resection, en bloc sacrectomy, and pubic bone resection. A tailored surgical approach depending on the location of the tumor with resection of contiguously involved organs, yet preserving uninvolved organs to minimize unnecessary surgical morbidity, is paramount. Despite improved surgical and oncological outcomes, surgical morbidity following pelvic exenteration remains high with reported complication rates ranging between 20% and 80%. Extended antibiotic prophylaxis and preemptive parenteral nutrition in the immediate postoperative period may reduce septic and nutritional complications. A high index of suspicion is needed in the early diagnosis and management of complications that may avoid prolonged duration of hospitalization. An acceptable quality of life has been reported among patients after pelvic exenteration. Further research into novel chemotherapy, immunotherapy, and reconstructive options are currently underway and are needed to further improve outcomes.

Palliative Pelvic Exenteration: Clinical Outcomes and Quality of Life.

BACKGROUND: Locally advanced pelvic malignancy can be associated with disabling symptoms and reduced quality of life. If resectable with clear margins, a pelvic exenteration can offer long-term survival and improved quality of life. Its role in the palliation of symptoms has been described; however, the clinical outcomes and surgical indication are poorly defined. OBJECTIVE: This study describes the clinical and quality-of-life outcomes after palliative pelvic exenteration for advanced pelvic malignancy. DESIGN: Clinical data and patient-reported outcomes were collected for patients undergoing pelvic exenteration for symptom palliation. SETTINGS: This study was conducted at a tertiary referral center for pelvic exenteration. PATIENTS: All of the patients undergoing palliative pelvic exenteration for advanced primary rectal or recurrent cancer were included in our analysis. MAIN OUTCOME MEASURES: Patient-reported quality of life and physical and mental health status were measured. Quality-of-life trajectories were modeled over the 12 months from the date of surgery using linear mixed models. RESULTS: A total of 39 patients underwent pelvic exenteration for symptom palliation. Although there were no in-hospital deaths, 34% experienced significant morbidity. Patient-reported quality of life reduced postoperatively and gradually declined thereafter. Overall median survival was 24 months, with a 1-year mortality rate of 31%. There was a significant survival difference for the 39 patients undergoing pelvic exenteration compared with those patients who only had a debulking/bypass procedure or were closed without definitive treatment (overall median survival = 24 versus 9 months; p = <0.02). LIMITATIONS: Disease and patient heterogeneity limit the interpretation of these results. CONCLUSIONS: Palliative pelvic exenteration is a technically demanding operation that can be performed safely in a dedicated exenteration center. However, no durable palliation of symptoms with associated improved or sustained quality of life was observed, and the role of palliation therefore remains highly controversial in this complex group of patients.

Adapting the nominal group technique for priority setting of evidence-practice gaps in implementation science.

BACKGROUND: There are a variety of methods for priority setting in health research but few studies have addressed how to prioritise the gaps that exist between research evidence and clinical practice. This study aimed to build a suite of robust, evidence based techniques and tools for use in implementation science projects. We applied the priority setting methodology in lung cancer care as an example. METHODS: We reviewed existing techniques and tools for priority setting in health research and the criteria used to prioritise items. An expert interdisciplinary consensus group comprised of health service, cancer and nursing researchers iteratively reviewed and adapted the techniques and tools. We tested these on evidence-practice gaps identified for lung cancer. The tools were pilot tested and finalised. A brief process evaluation was conducted. RESULTS: We based our priority setting on the Nominal Group Technique (NGT). The adapted tools included a matrix for individuals to privately rate priority gaps; the same matrix was used for group discussion and reaching consensus. An investment exercise was used to validate allocation of priorities across the gaps. We describe the NGT process, criteria and tool adaptations and process evaluation results. CONCLUSIONS: The modified NGT process, criteria and tools contribute to building a suite of methods that can be applied in prioritising evidence-practice gaps. These methods could be adapted for other health settings within the broader context of implementation science projects.

Incidence and survival trends for malignant pleural and peritoneal mesothelioma, Australia, 1982-2009.

BACKGROUND: Australia is known to have had one of the highest per-capita asbestos consumption rates, yet there are few contemporary reports on malignant mesothelioma trends. METHODS: Data on 10 930 people with malignant pleural mesothelioma (MPM) and 640 people with malignant peritoneal mesothelioma diagnosed in Australia during 1982-2009 were analysed. Observed incidence rate trends were quantified. Incidence rates were projected up to 2030 using observed incident cases during 1982-2012. The relative per-decade change in excess mortality during 1999-2009 was estimated. RESULTS: During 1982-2009, acceleration in MPM age-standardised incidence rates were highest for women and those aged 75 years and above, with average annual percentage changes of +4.9 (95% CI 3.6 to 6.2) and +7.2 (95% CI 5.4 to 9.0), respectively. Age-standardised incidence rates for men with MPM aged 0-64 years decelerated rapidly during 2003-2009, an average annual percentage change of -5.1% (95% CI -7.6% to -2.5%). Overall, male age-specific MPM incidence rates in the age group of 65-74 year during 2010-2030 are projected to decline with rates projected to increase for older men and women with MPM. There was a statistically significant 16% relative reduction in the excess mortality rate (EMR) up to 5 years postdiagnosis for people diagnosed with malignant pleural and peritoneal mesothelioma combined in 2009 compared with those diagnosed in 1999, an EMR ratio of 0.84 (95% CI 0.77 to 0.92). CONCLUSIONS: Australia's malignant mesothelioma incidence rates appear to have reached maximum levels but with differences over time by age, gender and tumour location. Improvements over time in survival provide a glimpse of hope for this almost invariably fatal disease.