Successful Evidence-Based Treatment of Patients with Advanced Pancreatic Cancer in Community-Based Oncology Group Practices.

BACKGROUND: Randomized clinical trials do not reflect the day-to-day reality of patient care; hence, the treatment of patients with advanced pancreatic cancer in oncology group practices was evaluated. PATIENTS AND METHODS: All consecutive patients with advanced pancreatic cancer who were treated between 01/2012 and 12/2015 in 4 oncology group practices were analyzed retrospectively using SPSS software. RESULTS: 324 patients with a median age of 70 years (range 32-94 years) were analyzed. The majority were male (56%) and had distant metastases (74%). Chemotherapy was the major modality of treatment (86%) with a median overall survival (OS) of 33.3 weeks (range 1.7-245.4 weeks). Chemotherapy significantly (p < 0.001) improved OS in comparison to best supportive care only (37.6 vs. 13.9 weeks). Patients with locally advanced disease had a better prognosis compared to patients with metastases (median OS 49.6 vs. 30.4 weeks; p < 0.001). An age-adjusted Charlson comorbidity score of ≥ 9 was found to influence the OS significantly (p = 0.004). CONCLUSION: Chemotherapy remains the main modality of treatment for patients with advanced pancreatic cancer with an OS comparable to prospective randomized trials. The OS of this patient cohort has remained the same over the last 20 years despite advances in treatment modalities.

Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia.

An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers' experiences of engaging their relatives in daily activities in domestic settings. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative's daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative's identity; enhancing a sense of connection with their relative's role and identity using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed.

Autonomous Medication Management (GAM): new perspectives on well-being, quality of life and psychiatric medication / Gestão Autônoma da Medicação (GAM): novas perspectivas sobre bem-estar, qualidade de vida e medicação psiquiátrica

Autonomous Medication Management (GAM) is an innovative approach developed in partnership with medication users. It takes their subjective experience into account and strives to place the individual at the center of pharmacological treatment in psychiatry with a view to improving well-being and quality of life. It creates spaces of open dialogue on the issue of medication amongst users, physicians and their family and friends. This article is derived from a research study and presents the principles, practices and main impacts of GAM on how people relate to their medications and the physicians who prescribe them. The major positive effects were the users' clearer understanding of their experience of taking psychiatric medication and their rights, the reduction or elimination of sudden and unsupervised treatment interruptions and the users' sense of having more control over their treatment. It includes inner experience and life, an improved relationship with professionals and space for negotiation with the physician and, lastly, changes to prescriptions that significantly improved well-being and recovery. The distinguishing features of GAM are described and compared with other approaches, giving a voice to people who take medication.

A Gestão Autônoma da Medicação (GAM) é uma abordagem inovadora desenvolvida em parceria com usuários que fazem uso de medicação, considerando sua experiência subjetiva, se esforçando para colocar a pessoa no centro do tratamento farmacológico psiquiátrico, visando uma melhora no bem-estar e na qualidade de vida, criando oportunidades de expressão, diálogo e apoio entre as pessoas, os profissionais e seus próximos. Este artigo, resulta de uma pesquisa que apresenta os princípios, as práticas e os principais impactos da GAM no modo como as pessoas se relacionam com seus medicamentos e com os médicos que as prescrevem. Entre os principais efeitos observados, encontramos uma melhor compreensão da experiência, de seus direitos e do tratamento farmacológico; uma redução, ou eliminação das interrupções súbitas de tratamento e sem acompanhamento; uma percepção de maior controle sobre seu tratamento, sua experiência interior e sua vida; uma melhora no relacionamento entre profissionais com espaço para negociação; e mudanças nas prescrições, o que mostrou grande impacto no bem-estar, qualidade de vida na comunidade e restabelecimento (recovery). Características importantes da GAM são também identificadas em outras abordagens, dando voz às pessoas que utilizam medicação.