Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan

Background: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. Method: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). Results: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. Conclusions: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required

Factors influencing the speed of cancer diagnosis in rural Western Australia: A General Practice perspective

Introduction. The speed of diagnosis impacts on prognosis and survival in all types of cancer. In most cases survival and prognosis are significantly worse in rural and remote Australian populations who have less access to diagnostic and therapeutic services than metropolitan communities in this country. Research suggests that in general delays in diagnosis were a factor of misdiagnosis, the confounding effect of existing conditions and delayed or misleading investigation of symptoms. The aim of this study is to further explore the factors that impact on the speed of diagnosis in rural Western Australia with direct reference to General Practitioners (GPs) working in this setting. Methods. The methodology consisted of a structured discussion of specific cases. GPs based in two rural locations in Western Australia were asked to identify up to eight clinical cases for discussion. A diversity of cases was requested encompassing those with timely and delayed diagnosis of cancer. Focus groups were held with the practitioners to identify which factors under six headings delayed or facilitated the diagnosis in each case. A structured summary of the discussion was relayed to a wider group of GPs to seek additional views or comments on specific factors that impact on the speed of cancer diagnosis in rural and remote locations in Australia. Results. A number of factors affecting the speed of diagnosis were identified: the demographic shift towards a frailer and older population, presenting with multiple and complex diseases, increases the challenge to identify early cancer symptoms; seasonal and demanding work patterns leading to procrastination in presenting for medical care; unhelpful scheduling of specialist appointments; and the varying impact of informal networks and social relationships. Conclusion. Within the limitations of this study we have generated a number of hypotheses that require formal evaluation: (1) GPs working within informal professional and social networks are better informed about their patients' health needs and have an advantage in making early diagnosis; (2) Despite the other differences in the population characteristics decentralising services would improve the prospect for timely diagnosis; and (3) Careful coordination of specialist appointments would improve the speed of diagnosis for rural patients. © 2007 Jiwa et al; licensee BioMed Central Ltd

Innovation, Social Capital, and Regional Policy: The Case of the Communities First Programme in Wales

This paper analyses how and why different forms of social capital are associated with different forms of innovation within the Communities First programme in Wales. Quantitative analysis shows that the Communities First programme partnerships analysed in this research are supportive of building both bonding and bridging social capital. Different types of bonding social capital appear to be positively related with two of the three types of innovative activity; it is bridging social capital which is statistically more strongly related to innovation outcomes, with some types of bonding social capital actually negatively related to hidden innovation. Whilst social capital building should not be considered a panacea for increasing levels of innovative activity within policies such as the Communities First programme. The qualitative analysis reveals multiple ways in which the Communities First programme partnerships evaluated are actively encouraging the simultaneous formation of bonding and bridging social capital, with evidence of hidden innovation and in particular social innovation being simultaneously formed. It can be stated, therefore, that regional policy aiming to develop non-traditional forms of innovation should more closely and explicitly reflect the relevance of building and maintaining particular types of bonding and especially bridging social capital

Factors influencing the surgery intentions and choices of women with early breast cancer: the predictive utility of an extended theory of planned behaviour

Contains fulltext : 125449.pdf (publisher's version ) (Open Access)BACKGROUND: Women diagnosed with early breast cancer (stage I or II) can be offered the choice between mastectomy or breast conservation surgery with radiotherapy due to equivalence in survival rates. A wide variation in the surgical management of breast cancer and a lack of theoretically guided research on this issue highlight the need for further research into the factors influencing women's choices. An extended Theory of Planned Behaviour (TPB) could provide a basis to understand and predict women's surgery choices. The aims of this study were to understand and predict the surgery intentions and choices of women newly diagnosed with early breast cancer, examining the predictive utility of an extended TPB. METHODS: Sixty-two women recruited from three UK breast clinics participated in the study; 48 women, newly diagnosed with early breast cancer, completed online questionnaires both before their surgery and after accessing an online decision support intervention (BresDex). Questionnaires assessed views about breast cancer and the available treatment options using items designed to measure constructs of an extended TPB (i.e., attitudes, subjective norms, perceived behavioural control, and anticipated regret), and women's intentions to choose mastectomy or BCS. Objective data were collected on women's choice of surgery via the clinical breast teams. Multiple and logistic regression analyses examined predictors of surgery intentions and subsequent choice of surgery. RESULTS: The extended TPB accounted for 69.9% of the variance in intentions (p <.001); attitudes and subjective norms were significant predictors. Including additional variables revealed anticipated regret to be a more important predictor than subjective norms. Surgery intentions significantly predicted surgery choices (p <.01). CONCLUSIONS: These findings demonstrate the utility of an extended TPB in predicting and understanding women's surgery intentions and choices for early breast cancer. Understanding these factors should help to identify key components of interventions to support women while considering their surgery options