Objective To assess treatment related changes in quality of life up to 15 years after diagnosis of localised prostate cancer. Design Population based, prospective cohort study with follow-up over 15 years. Setting New South Wales, Australia. Participants 1642 men with localised prostate cancer, aged less than 70, and 786 controls randomly recruited from the New South Wales electoral roll into the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Main outcome measures General health and disease specific quality of life were self-reported at seven time points over a 15 year period, using the 12-item Short Form Health Survey scale, University of California, Los Angeles prostate cancer index, and expanded prostate cancer index composite short form (EPIC-26). Adjusted mean differences were calculated with controls as the comparison group. Clinical significance of adjusted mean differences was assessed by the minimally important difference, defined as one third of the standard deviation (SD) from the baseline score. Results At 15 years, all treatment groups reported high levels of erectile dysfunction, depending on treatment (62.3% (active surveillance/watchful waiting, n=33/53) to 83.0% (non-nerve sparing radical prostatectomy, n=117/141)) compared with controls (42.7% (n=44/103)). Men who had external beam radiation therapy or high dose rate brachytherapy or androgen deprivation therapy as primary treatment reported more bowel problems. Self-reported urinary incontinence was particularly prevalent and persistent for men who underwent surgery, and an increase in urinary bother was reported in the group receiving androgen deprivation therapy from 10 to 15 years (year 10: adjusted mean difference −5.3, 95% confidence interval −10.8 to 0.2; year 15: −15.9; −25.1 to −6.7). Conclusions Patients receiving initial active treatment for localised prostate cancer had generally worse long term self-reported quality of life than men without a diagnosis of prostate cancer. Men treated with radical prostatectomy faired especially badly, particularly in relation to long term sexual outcomes. Clinicians and patients should consider these long term quality of life outcomes when making treatment decisions.
The COVID-19 pandemic has dramatically impacted cancer care worldwide. Disruptions have been seen across all facets of care. While the long-term impact of COVID-19 remains unclear, the immediate impacts on patients, their carers and the healthcare workforce are increasingly evident. This study describes disruptions and reorganisation of cancer services in Australia since the onset of COVID-19, from the perspectives of people affected by cancer and healthcare workers. Two separate online cross-sectional surveys were completed by: a) cancer patients, survivors, carers, family members or friends (n = 852) and b) healthcare workers (n = 150). Descriptive analyses of quantitative survey data were conducted, followed by inductive thematic content analyses of qualitative survey responses relating to cancer care disruption and perceptions of telehealth. Overall, 42% of cancer patients and survivors reported experiencing some level of care disruption. A further 43% of healthcare workers reported atypical delays in delivering cancer care, and 50% agreed that patient access to research and clinical trials had been reduced. Almost three quarters (73%) of patients and carers reported using telehealth following the onset of COVID-19, with high overall satisfaction. However, gaps were identified in provision of psychological support and 20% of participants reported that they were unlikely to use telehealth again. The reorganisation of cancer care increased the psychological and practical burden on carers, with hospital visitation restrictions and appointment changes reducing their ability to provide essential support. COVID-19 has exacerbated a stressful and uncertain time for people affected by cancer and healthcare workers. Service reconfiguration and the adoption of telehealth have been essential adaptations for the pandemic response, offering long-term value. However, our findings highlight the need to better integrate psychosocial support and the important role of carers into evolving pandemic response measures. Learnings from this study could inform service improvements that would benefit patients and carers longer-term.
Purpose This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. Methods Using real-time insights from two Cancer Council NSW services—131120 Information and Support Line and Online Community (CCOC) forums—we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. Results In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. Conclusions The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.
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