From the carer's mouth: a phenomenological exploration of carer experiences with head and neck cancer patients

Objective: Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer.Methods: This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semi‐structured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences.Results: Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects.Conclusions: Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for practice include screening for carer distress and providing specific interventions focused on caring for someone diagnosed with head and neck cancer

Clinicopathological characteristics and clinical morbidity in high-risk head and neck cutaneous squamous cell carcinoma patients in Western Australia

Background: There is no registry data on morbidity and mortality of high-risk cutaneous squamous cell carcinoma (cSCC) in Australia. Aim: To examine the clinicopathological features, mortality and morbidity in high-risk cSCC patients in Western Australia (WA). Methods: A retrospective cohort study was conducted through hospital record review on cSCC patients discussed at multidisciplinary meetings at the two largest WA hospitals between March 2015 and December 2016. Results: Of 141 patients, 129 were evaluable, with median follow up of 43.9 (range 3.0–53.2) months. Patients were predominantly older males (84%) with significant comorbidities (Charlson Comorbidity Index (CCI) ≥5; 76%) and history of previous nonmelanoma skin cancer (57%) with advanced disease (57% stage IV without distant metastasis; American Joint Committee on Cancer, 7th edition). Pathological high-risk features were common including nodal extracapsular extension (47%) and cranial nerve involvement (16%). Clinical morbidity was significant with a median of 2 (range 0–13) excisions and 2 (range 0–21) cSCC-related hospitalisations for any cSCC event following the index case discussion. Recurrences of the primary index lesion occurred in 60% of patients and 20% had ≥2 recurrences. Median overall survival for patients with nonmetastatic disease was 39.8 (range 25.9–53.7) months and 16.1 (range 0.2–32.0) months for metastatic disease. CCI ≥5, advanced nodal stage and ≥2 recurrences were significantly associated with mortality on multivariable analyses (P \u3c 0.05). Nodal extracapsular extension and any recurrences were identified as significant risk factors for disease-specific mortality on multivariable analyses (P \u3c 0.05). Conclusion: High-risk cSCC patients have significant health needs represented by high-baseline comorbidities, multiplicity of cSCC events and the number of healthcare-associated interventions. There is an unmet need for robust cancer data collection

Multi-observer contouring of male pelvic anatomy: Highly variable agreement across conventional and emerging structures of interest

Introduction: This study quantified inter‐observer contouring variations for multiple male pelvic structures, many of which are of emerging relevance for prostate cancer radiotherapy progression and toxicity response studies. Methods: Five prostate cancer patient datasets (CT and T2‐weighted MR) were distributed to 13 observers for contouring. CT structures contoured included the clinical target volume (CTV), seminal vesicles, rectum, colon, bowel bag, bladder and peri‐rectal space (PRS). MR contours included CTV, trigone, membranous urethra, penile bulb, neurovascular bundle and multiple pelvic floor muscles. Contouring variations were assessed using the intraclass correlation coefficient (ICC), Dice similarity coefficient (DSC), and multiple additional metrics. Results: Clinical target volume (CT and MR), bladder, rectum and PRS contours showed excellent inter‐observer agreement (median ICC = 0.97; 0.99; 1.00; 0.95; 0.90, DSC = 0.83 ± 0.05; 0.88 ± 0.05; 0.93 ± 0.03; 0.81 ± 0.07; 0.80 ± 0.06, respectively). Seminal vesicle contours were more variable (ICC = 0.75, DSC = 0.73 ± 0.14), while colon and bowel bag contoured volumes were consistent (ICC = 0.97; 0.97), but displayed poor overlap (DSC = 0.58 ± 0.22; 0.67 ± 0.21). Smaller MR structures showed significant inter‐observer variations, with poor overlap for trigone, membranous urethra, penile bulb, and left and right neurovascular bundles (DSC = 0.44 ± 0.22; 0.41 ± 0.21; 0.66 ± 0.21; 0.16 ± 0.17; 0.15 ± 0.15). Pelvic floor muscles recorded moderate to strong inter‐observer agreement (ICC = 0.50–0.97), although large outlier variations were observed. Conclusions: Inter‐observer contouring variation was significant for multiple pelvic structures contoured on MR