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1.
Maturitas ; 188: 108089, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39128261

RESUMO

OBJECTIVES: Middle-aged women (i.e., aged 40-65 years) who live with, through and beyond breast cancer (survivors) are an under-researched population, particularly within an Australian context. The unmet needs reported within this population include fatigue, psychological distress, body image concerns, early-onset menopause, and a lack of information on these issues. This study explores how the experiences of breast cancer survivorship impact the lives of Australian middle-aged women. STUDY DESIGN: Qualitative analysis of written comments in an open text field of a survey completed by 644 women reporting breast cancer in the middle-aged cohort of the Australian Longitudinal Study of Women's Health gathered between 1996 and 2013. Data was collected from any participants who reported breast cancer in any survey. Researchers conducted a thematic analysis using consensus coding on data and identified key themes. MAIN OUTCOME MEASURES: Any data where participants described their experiences of breast cancer survivorship. RESULTS: This cohort reported a unique experience of breast cancer survivorship due to their age group. Analysis developed the following themes: the middle-aged context of breast cancer; care and support, body changes, overcoming fears and maintaining balance; and finding a 'new normal'. CONCLUSIONS: Breast cancer survivorship is a diverse experience. For many it involves chronic limitations and challenges. Investigation and application of survivorship care plans in Australia could benefit breast cancer survivors by including multidisciplinary health professionals in their care. Unmet needs and psychological distress were described by participants rather than biomedical concerns. Further recommendations include development of online support groups providing access to rehabilitation professionals, especially for otherwise isolated rural women.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Humanos , Feminino , Pessoa de Meia-Idade , Neoplasias da Mama/psicologia , Austrália , Sobreviventes de Câncer/psicologia , Adulto , Idoso , Estudos Longitudinais , Imagem Corporal/psicologia , Inquéritos e Questionários , Fadiga/psicologia , Pesquisa Qualitativa , Medo/psicologia , Apoio Social
2.
Health Expect ; 27(3): e14073, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38733245

RESUMO

BACKGROUND: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. METHODS: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. RESULTS: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. CONCLUSIONS: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. PATIENT OR PUBLIC CONTRIBUTION: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.


Assuntos
Neoplasias Encefálicas , Glioma , Entrevistas como Assunto , Autogestão , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Glioma/terapia , Glioma/psicologia , Reino Unido , Neoplasias Encefálicas/terapia , Neoplasias Encefálicas/psicologia , Adulto , Pesquisa Qualitativa , Pessoal de Saúde/psicologia , Apoio Social , Idoso
3.
Neurooncol Pract ; 11(3): 255-265, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38737616

RESUMO

Background: Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs. Methods: We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted. Results: Four themes relating to the impact experiences of people with LGG were generated: "Emotional response to the diagnosis," "Living with the 'What ifs'," "Changing relationships," and "Faltering independence." These reflect participants' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout. Conclusions: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.

4.
Palliat Med ; 38(5): 546-554, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38654605

RESUMO

BACKGROUND: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. AIM: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. DESIGN: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. SETTING/PARTICIPANTS: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. RESULTS: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. CONCLUSION: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Austrália , Estudos de Coortes , Adulto , Fatores de Tempo , Avaliação de Estado de Karnofsky
5.
J Cancer Surviv ; 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38512564

RESUMO

PURPOSE: Self-management can have clinical and quality-of-life benefits. However, people with lower-grade gliomas (LGG) may face chronic tumour- and/or treatment-related symptoms and impairments (e.g. cognitive deficits, seizures), which could influence their ability to self-manage. Our study aimed to identify and understand the barriers and facilitators to self-management in people with LGG. METHODS: We conducted semi-structured interviews with 28 people with LGG across the United Kingdom, who had completed primary treatment. Sixteen participants were male, mean age was 50.4 years, and mean time since diagnosis was 8.7 years. Interviews were audio-recorded and transcribed. Following inductive open coding, we deductively mapped codes to Schulman-Green et al.'s framework of factors influencing self-management, developed in chronic illness. RESULTS: Data suggested extensive support for all five framework categories ('Personal/lifestyle characteristics', 'Health status', 'Resources', 'Environmental characteristics', 'Healthcare system'), encompassing all 18 factors influencing self-management. How people with LGG experience many of these factors appears somewhat distinct from other cancers; participants described multiple, often co-occurring, challenges, primarily with knowledge and acceptance of their incurable condition, the impact of seizures and cognitive deficits, transport difficulties, and access to (in)formal support. Several factors were on a continuum, for example, sufficient knowledge was a facilitator, whereas lack thereof, was a barrier to self-management. CONCLUSIONS: People with LGG described distinctive experiences with wide-ranging factors influencing their ability to self-manage. IMPLICATIONS FOR CANCER SURVIVORS: These findings will improve awareness of the potential challenges faced by people with LGG around self-management and inform development of self-management interventions for this population.

6.
Neuro Oncol ; 26(6): 1138-1151, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38285679

RESUMO

BACKGROUND: The aim was to predict survival of glioblastoma at 8 months after radiotherapy (a period allowing for completing a typical course of adjuvant temozolomide), by applying deep learning to the first brain MRI after radiotherapy completion. METHODS: Retrospective and prospective data were collected from 206 consecutive glioblastoma, isocitrate dehydrogenase -wildtype patients diagnosed between March 2014 and February 2022 across 11 UK centers. Models were trained on 158 retrospective patients from 3 centers. Holdout test sets were retrospective (n = 19; internal validation), and prospective (n = 29; external validation from 8 distinct centers). Neural network branches for T2-weighted and contrast-enhanced T1-weighted inputs were concatenated to predict survival. A nonimaging branch (demographics/MGMT/treatment data) was also combined with the imaging model. We investigated the influence of individual MR sequences; nonimaging features; and weighted dense blocks pretrained for abnormality detection. RESULTS: The imaging model outperformed the nonimaging model in all test sets (area under the receiver-operating characteristic curve, AUC P = .038) and performed similarly to a combined imaging/nonimaging model (P > .05). Imaging, nonimaging, and combined models applied to amalgamated test sets gave AUCs of 0.93, 0.79, and 0.91. Initializing the imaging model with pretrained weights from 10 000s of brain MRIs improved performance considerably (amalgamated test sets without pretraining 0.64; P = .003). CONCLUSIONS: A deep learning model using MRI images after radiotherapy reliably and accurately determined survival of glioblastoma. The model serves as a prognostic biomarker identifying patients who will not survive beyond a typical course of adjuvant temozolomide, thereby stratifying patients into those who might require early second-line or clinical trial treatment.


Assuntos
Neoplasias Encefálicas , Glioblastoma , Imageamento por Ressonância Magnética , Humanos , Glioblastoma/diagnóstico por imagem , Glioblastoma/radioterapia , Glioblastoma/mortalidade , Glioblastoma/patologia , Imageamento por Ressonância Magnética/métodos , Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/diagnóstico por imagem , Neoplasias Encefálicas/mortalidade , Neoplasias Encefálicas/patologia , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Estudos Prospectivos , Idoso , Prognóstico , Aprendizado Profundo , Adulto , Taxa de Sobrevida , Seguimentos , Temozolomida/uso terapêutico
7.
Qual Health Res ; 34(3): 227-238, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37967320

RESUMO

Those closest to people with lower-grade gliomas (LGGs) often assume the role of informal caregiver (IC). The additional responsibilities mean ICs of people with cancer can experience adverse impacts on their own lives. We explored the emotional impact of informal caregiving for people with LGGs. This was a descriptive qualitative study within the multi-method Ways Ahead project. We conducted semi-structured interviews with individuals from the United Kingdom, who currently, or in the past 5 years, informally cared for someone with an LGG. Interviews encompassed experiences of emotional impact as a consequence of caregiving for someone with an LGG. Inductive thematic analysis was undertaken. We interviewed 19 ICs (mean age 54.6 years; 14 females, 5 males). Participants reported substantial emotional impact. Four themes and associated subthemes were generated: Emotional responses to the illness (e.g. feeling helpless), Emotional responses to the unknown (e.g. anxiety about future uncertainty), Emotional consequences of care recipient changes (e.g. challenges of changed relationship dynamics), and Emotional weight of the responsibility (e.g. feeling burnout). Emotional impact in one area often exacerbated impact in another (e.g. future uncertainty impacted feelings of helplessness). Participants detailed the factors that helped them manage the emotional impact (e.g. being resilient). ICs of people with LGGs can experience wide-ranging emotional responses to and impacts of the illness, uncertain prognosis, care recipient changes, and the toll of caregiving. Adjustment and resilience are key protective factors, though further consideration of ways to identify and fulfil the emotional support needs of ICs of people with LGGs is required.


Assuntos
Glioma , Resiliência Psicológica , Masculino , Feminino , Humanos , Pessoa de Meia-Idade , Glioma/psicologia , Emoções , Ansiedade , Cuidadores/psicologia
8.
BMJ Open ; 13(9): e074151, 2023 09 28.
Artigo em Inglês | MEDLINE | ID: mdl-37770270

RESUMO

OBJECTIVES: This study aimed to explore the work experiences of people living with an oligodendroglioma. DESIGN: This was a descriptive qualitative study. One-time semi-structured interviews exploring supportive care needs were conducted; work was discussed at various points throughout each interview. An inductive thematic analysis was undertaken. SETTING: Participants were recruited across the UK through four National Health Service hospitals and the Brain Tumour Charity research involvement networks. PARTICIPANTS: 19 people with grade 2 or 3 oligodendroglioma (mean age 52 years; male n=11). At diagnosis, 16 participants were working, 2 studying and 1 retired. At the interview (mean time since diagnosis 9.6 years; range 1-18 years), seven participants were working, eight retired (four on medical grounds) and four unable to work due to illness. RESULTS: Seven themes were constructed: (1) physical and cognitive limitations; (2) work ability and productivity; (3) work accommodations; (4) changing roles; (5) attitudes of clients and coworkers; (6) feelings and ambitions; and (7) financial implications. Fatigue, seizures and cognitive deficits influenced work ability. A stressful work environment could exacerbate symptoms. Changes in job roles and work environment were often required. Employer and coworker support were integral to positive experiences. Work changes could result in financial stress and strain. CONCLUSIONS: This study has highlighted, for the first time, influences on work experiences in this understudied population. These findings have implications for clinicians and employers, when considering the importance of work in rehabilitation for people with oligodendrogliomas, and the individually assessed adjustments required to accommodate them, should employment be desired.


Assuntos
Oligodendroglioma , Humanos , Masculino , Pessoa de Meia-Idade , Medicina Estatal , Emprego/psicologia , Pesquisa Qualitativa , Aposentadoria
9.
Br J Radiol ; 96(1152): 20220462, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37660364

RESUMO

Stereotactic radiosurgery is an established focal treatment for brain metastases with high local control rates. An important side-effect of stereotactic radiosurgery is the development of radionecrosis. On conventional MR imaging, radionecrosis and tumour progression often have similar appearances, but have contrasting management approaches. Perfusion MR imaging is often used in the post-treatment setting in order to help distinguish between the two, but image interpretation can be fraught with challenges.Perfusion MR plays an established role in the baseline and post-treatment evaluation of primary brain tumours and a number of studies have concentrated on the value of perfusion imaging in brain metastases. Of the parameters generated, relative cerebral blood volume is the most widely used variable in terms of its clinical value in differentiating between radionecrosis and tumour progression. Although it has been suggested that the relative cerebral blood volume tends to be elevated in active metastatic disease following treatment with radiosurgery, but not with treatment-related changes, the literature available on interpretation of the ratios provided in the context of defining tumour progression is not consistent.This article aims to provide an overview of the role perfusion MRI plays in the assessment of brain metastases and introduces the rationale for the STARBEAM-X study (Study of assessment of radionecrosis in brain metastases using MR perfusion extra imaging), which will prospectively evaluate baseline perfusion imaging in brain metastases. We hope this will allow insight into the vascular appearance of metastases from different primary sites, and aid in the interpretation of post-treatment perfusion imaging.


Assuntos
Neoplasias Encefálicas , Radiocirurgia , Humanos , Radiocirurgia/métodos , Neoplasias Encefálicas/diagnóstico por imagem , Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/patologia , Imageamento por Ressonância Magnética , Perfusão
10.
Eur J Cancer ; 190: 112946, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37453240

RESUMO

BACKGROUND: In an international randomised controlled phase II study of temozolomide (TMZ) versus TMZ in combination with bevacizumab (BEV) in locally diagnosed non-1p/19q co-deleted World Health Organization grade 2 or 3 gliomas with a first and contrast-enhancing recurrence after initial radiotherapy, and overall survival at 12 months was not significantly different (61% in the TMZ arm and 55% in the TMZ + BEV arm). OBJECTIVES: Health-related quality of life (HRQoL) was a key secondary end-point in this trial, and the main objective of this study was to determine the impact of the addition of BEV to TMZ on HRQoL. METHODS: HRQoL was assessed using the European Organization for Research and Treatment of Cancer QLQ-C30 (version 3) and QLQ-BN20 at baseline, and then every 12 weeks until disease progression. The pre-selected primary HRQoL end-point was the QLQ-C30 global health scale, with self-perceived cognitive functioning and pain selected as secondary HRQoL issues. Analysis was undertaken using linear mixed modelling and complemented with sensitivity analyses using summary statistics. A difference was considered clinically relevant with ≥10 points difference on a 100-point scale. RESULTS: Baseline compliance was high at 94% and remained above 60% until 72 weeks, limiting the analysis to 60 weeks. Compliance was similar in both arms. We found no statistically significant or clinically significant differences between the primary HRQoL end-point in both treatment arms (p = 0.2642). The sensitivity analyses confirmed this finding. The overall test for post-baseline differences between the two treatment arms also showed no statistically or clinically significant differences regarding the selected secondary end-point scales. INTERPRETATION: The addition of BEV to TMZ in this patient group neither improves nor negatively impacts HRQoL.


Assuntos
Neoplasias Encefálicas , Glioma , Humanos , Temozolomida/uso terapêutico , Bevacizumab/efeitos adversos , Qualidade de Vida , Glioma/tratamento farmacológico , Organização Mundial da Saúde
11.
J Cancer Surviv ; 2023 Jul 14.
Artigo em Inglês | MEDLINE | ID: mdl-37450254

RESUMO

PURPOSE: Lower-grade gliomas (LGG) are mostly diagnosed in working-aged adults and rarely cured. LGG patients may face chronic impairments (e.g. fatigue, cognitive deficits). Self-management can improve clinical and psychosocial outcomes, yet how LGG patients self-manage the consequences of their tumour and its treatment is not fully understood. This study, therefore, aimed to identify and understand how LGG patients engage in the self-management of their condition. METHODS: A diverse group of 28 LGG patients (age range 22-69 years; male n = 16, female n = 12; mean time since diagnosis = 8.7 years) who had completed primary treatment, were recruited from across the United Kingdom. Semi-structured interviews were conducted. Informed by a self-management strategy framework developed in cancer, directed content analysis identified and categorised self-management types and strategies used by patients. RESULTS: Overall, 20 self-management strategy types, comprising 123 self-management strategies were reported; each participant detailed extensive engagement in self-management. The most used strategy types were 'using support' (n = 28), 'creating a healthy environment' (n = 28), 'meaning making' (n = 27), and 'self-monitoring' (n = 27). The most used strategies were 'accepting the tumour and its consequences' (n = 26), 'receiving support from friends (n = 24) and family' (n = 24), and 'reinterpreting negative consequences' (n = 24). CONCLUSIONS: This study provides a comprehensive understanding of the strategies used by LGG patients to self-manage their health and wellbeing, with a diverse, and substantial number of self-management strategies reported. IMPLICATIONS FOR CANCER SURVIVORS: The findings will inform the development of a supported self-management intervention for LGG patients, which will be novel for this patient group.

12.
Support Care Cancer ; 31(6): 355, 2023 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-37237058

RESUMO

Brain tumours and their associated treatments can lead to progressive impairments of communication, adversely affecting quality-of-life. This commentary explores our concerns that people with speech, language, and communication needs face barriers to representation and inclusion in brain tumour research; we then offer possible solutions to support their participation. Our main concerns are that there is currently poor recognition of the nature of communication difficulties following brain tumours, limited focus on the psychosocial impact, and lack of transparency on why people with speech, language, and communication needs were excluded from research or how they were supported to take part. We propose solutions focusing on working towards more accurate reporting of symptoms and the impact of impairment, using innovative qualitative methods to collect data on the lived experiences of speech, language, and communication needs, and empowering speech and language therapists to become part of research teams as experts and advocates for this population. These solutions would support the accurate representation and inclusion of people with communication needs after brain tumour in research, allowing healthcare professionals to learn more about their priorities and needs.


Assuntos
Comunicação , Idioma , Humanos , Qualidade de Vida
14.
Qual Life Res ; 32(3): 625-651, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35931881

RESUMO

PURPOSE: Low-grade glioma (LGG) patients may face health-related quality-of-life (HRQoL) impairments, due to the tumour, treatment and associated side-effects and prospects of progression. We systematically identified quantitative studies assessing HRQoL in adult LGG patients, for: aspects of HRQoL impacted; comparisons with non-cancer controls (NCC) and other groups; temporal trends; and factors associated with HRQoL. METHODS: MEDLINE, CINAHL, Embase, PubMed, and PsycINFO were systematically searched from inception to 14th September 2021. Following independent screening of titles and abstracts and full-texts, population and study characteristics, and HRQoL findings were abstracted from eligible papers, and quality appraised. Narrative synthesis was conducted. RESULTS: Twenty-nine papers reporting 22 studies (cross-sectional, n = 13; longitudinal, n = 9) were identified. Papers were largely good quality, though many excluded patients with cognitive and communication impairments. Comparators included high-grade gliomas (HGG) (n = 7); NCCs (n = 6) and other patient groups (n = 3). Nineteen factors, primarily treatment (n = 8), were examined for association with HRQoL. There was substantial heterogeneity in HRQoL instruments used, factors and aspects of HRQoL assessed and measurement timepoints. HRQoL, primarily cognitive functioning and fatigue, in adult LGG patients is poor, and worse than in NCCs, though better than in HGG patients. Over time, HRQoL remained low, but stable. Epilepsy/seizure burden was most consistently associated with worse HRQoL. CONCLUSION: LGG patients experience wide-ranging HRQoL impairments. HRQoL in those with cognitive and communication impairments requires further investigation. These findings may help clinicians recognise current supportive care needs and inform types and timings of support needed, as well as inform future interventions.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Glioma , Humanos , Adulto , Estudos Transversais , Qualidade de Vida/psicologia , Cognição
15.
Cancers (Basel) ; 16(1)2023 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-38201442

RESUMO

Self-management can improve clinical and psychosocial outcomes in cancer survivors. Which intervention characteristics and components are beneficial is unclear, hindering implementation into practice. We systematically searched six databases from inception to 17 November 2021 for studies evaluating self-management interventions for adult cancer survivors post-treatment. Independent reviewers screened for eligibility. Data extraction included population and study characteristics, intervention characteristics (TIDieR) and components (PRISMS), (associations with) quality of life (QoL), self-efficacy, and economic outcomes. Study quality was appraised, and narrative synthesis was conducted. We identified 53 papers reporting 32 interventions. Studies had varying quality. They were most often randomised controlled trials (n = 20), targeted at survivors of breast (n = 10), prostate (n = 7), or mixed cancers (n = 11). Intervention characteristics (e.g., provider, location) varied considerably. On average, five (range 1-10) self-management components were delivered, mostly "Information about condition and its management" (n = 26). Twenty-two studies reported significant QoL improvements (6 also reported significant self-efficacy improvements); these were associated most consistently with combined individual and group delivery. Economic evaluations were limited and inconclusive. Self-management interventions showed promise for improving QoL, but study quality was variable, with substantial heterogeneity in intervention characteristics and components. By identifying what to adapt from existing interventions, these findings can inform development and implementation of self-management interventions in cancer.

16.
Disabil Rehabil ; 44(18): 5310-5328, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-33974469

RESUMO

PURPOSE: A scoping review of international literature was conducted to identify the various problems encountered by women with breast cancer associated with cognitive deficits, and the relationship to work roles and tasks. METHOD: This scoping review was conducted using the structure recommended by Arksey & O'Malley in consideration of the PRISMA extension for Scoping Reviews checklist and reviewed for quality, inclusion criteria and key findings related to cognitive changes after breast and impact on work. Searches were conducted in five databases from January 2000 to December 2020. RESULTS: A total of 34 studies met the inclusion criteria. There were 20 quantitative studies, 11 qualitative studies, one mixed method and two case study reports. Findings related to the type of cognitive changes that impact work performance and participation, how these are measured in a work context and the types of interventions directed towards improving cognitive function at work after breast cancer. An absence of ecologically valid assessments and interventions with a coherent approach to early identification and management of cognitive changes after breast cancer was apparent. CONCLUSION: Breast cancer survivors can experience challenges in their employment due to cognitive deficits, which may lead to the loss of their employment. Health professionals need to explore breast cancer survivors work role and consider appropriate referrals to ensure women receive the necessary support and rehabilitation to address cognitive problems impacting work performance. Further research is needed to develop workplace-based cognitive assessments and interventions to improve the work performance and participation of women with breast cancer experiencing cognitive deficits.Implications for RehabilitationWork participation can be negatively impacted by unacknowledged cognitive changes that are not assessed and managed throughout the cancer survivorship journey.Health professionals in health care systems, particularly occupational therapists need to consider appropriate referrals to workplace rehabilitation providers to ensure necessary support and rehabilitation to address cognitive problems impacting on work performance.Occupational therapists performing workplace assessments for women with breast cancer, should assesses cognitive function in accordance with the cognitive demands of the job and work environment, and involve the employer and client in workplace based cognitive interventions.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Cognição , Emprego/psicologia , Feminino , Humanos , Sobreviventes/psicologia
17.
Qual Health Res ; 32(1): 64-79, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34836471

RESUMO

Caring for and bereavement following the death of someone with a life-limiting illness may precipitate social welfare needs related to income support and housing. Nevertheless, carer experiences of welfare policy and institutions have not received significant attention. This qualitative study explored experiences of carers who navigated social welfare policy while caring for someone with a life-limiting illness, and in bereavement. In-depth interviews were conducted with 12 bereaved carers in an area associated with socioeconomic disadvantage. Carers differentially encountered precariousness, with some experiencing structural vulnerability. These positionalities appeared to be shaped by policy and process-related burdens, perceptions of the welfare state, and degrees of legitimisation or disenfranchisement of forms of capital and coping orientations. Recommendations that may improve carer experience were identified. Implications relate to the need for an expanded conceptualisation of vulnerability in health and welfare practice, policy that authentically validates caring and grieving, and upstream strategies that address inequity.


Assuntos
Luto , Cuidadores , Austrália , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , Apoio Social , Seguridade Social
18.
Neuro Oncol ; 24(5): 755-767, 2022 05 04.
Artigo em Inglês | MEDLINE | ID: mdl-34672349

RESUMO

BACKGROUND: No systemic treatment has been established for meningioma progressing after local therapies. METHODS: This randomized, multicenter, open-label, phase II study included adult patients with recurrent WHO grade 2 or 3 meningioma. Patients were 2:1 randomly assigned to intravenous trabectedin (1.5 mg/m2 every 3 weeks) or local standard of care (LOC). The primary endpoint was progression-free survival (PFS). Secondary endpoints comprised overall survival (OS), objective radiological response, safety, quality of life (QoL) assessment using the QLQ-C30 and QLQ-BN20 questionnaires, and we performed tissue-based exploratory molecular analyses. RESULTS: Ninety patients were randomized (n = 29 in LOC, n = 61 in trabectedin arm). With 71 events, median PFS was 4.17 months in the LOC and 2.43 months in the trabectedin arm (hazard ratio [HR] = 1.42; 80% CI, 1.00-2.03; P = .294) with a PFS-6 rate of 29.1% (95% CI, 11.9%-48.8%) and 21.1% (95% CI, 11.3%-32.9%), respectively. Median OS was 10.61 months in the LOC and 11.37 months in the trabectedin arm (HR = 0.98; 95% CI, 0.54-1.76; P = .94). Grade ≥3 adverse events occurred in 44.4% of patients in the LOC and 59% of patients in the trabectedin arm. Enrolled patients had impeded global QoL and overall functionality and high fatigue before initiation of systemic therapy. DNA methylation class, performance status, presence of a relevant co-morbidity, steroid use, and right hemisphere involvement at baseline were independently associated with OS. CONCLUSIONS: Trabectedin did not improve PFS and OS and was associated with higher toxicity than LOC treatment in patients with non-benign meningioma. Tumor DNA methylation class is an independent prognostic factor for OS.


Assuntos
Neoplasias Encefálicas , Neoplasias Meníngeas , Meningioma , Adulto , Neoplasias Encefálicas/induzido quimicamente , Neoplasias Encefálicas/tratamento farmacológico , Intervalo Livre de Doença , Humanos , Neoplasias Meníngeas/tratamento farmacológico , Meningioma/tratamento farmacológico , Qualidade de Vida , Trabectedina/efeitos adversos , Trabectedina/uso terapêutico , Organização Mundial da Saúde
19.
Health Soc Care Community ; 29(3): 631-642, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33704840

RESUMO

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy. This qualitative study employed interpretive description to explore the way in which palliative care workers and welfare sector workers perceive and approach experiences and needs of bereaved carers receiving government income support or housing assistance in Western Sydney, an area associated with recognised socioeconomic disadvantage. A total of 21 palliative care workers within a public health service and welfare workers from two government social welfare services participated in in-depth interviews. Data were analysed using framework analysis. Participants highlighted social welfare policy and related interactions that may impact bereavement, potentially related to financial, housing and employment precariousness. Personal, interpersonal and structural factors perceived to shape the navigation of welfare needs were explored, alongside needed professional and structural changes envisioned by workers. With limited forms of capital, vulnerably positioned carers may encounter difficulties that heighten their precariousness in bereavement. Transactional organisational cultures alongside health and welfare agencies that function in a siloed manner appear to contribute to structural burden for carers, following death due to life-limiting illness. Palliative care and welfare workers also associated elements of their work with bereaved carers with their own experiences of helplessness, frustration and distress. Findings point to a need for the development of interagency strategies in addition to policy underpinned by more nuanced understandings of vulnerability in bereavement, post-caring.


Assuntos
Luto , Cuidados Paliativos , Austrália , Cuidadores , Humanos , Pesquisa Qualitativa , Apoio Social , Seguridade Social
20.
J Surg Res ; 262: 6-13, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33530006

RESUMO

BACKGROUND: The opioid epidemic continues and although some initiatives have shown promise in reducing the number of opiates prescribed, few studies have focused on education of general surgery patients about home storage and safe disposal. The purpose of this feasibility study was to explore the use of an online video intervention to prepare surgical patients to properly dispose of unused opioids. METHODS: Eligible patients undergoing elective general surgery between August and October 2019 were enrolled into this prospective randomized controlled feasibility study. Patients with reported opioid use preoperatively were excluded from the study. The control group followed usual care, and the intervention group received usual care plus a brief educational video guided by the theory of reasoned action describing safe storage and disposal practices of unused opioid pills. Measures were collected at baseline and 2 wk postoperatively. RESULTS: A total of 40 participants were enrolled in the study; average age was 44.7 (range 21-75 y); most were Caucasian, educated, and employed. Recruitment took 11 wk, and the retention rate was excellent at 85%. Differences in opioid disposal were not significantly different by age, sex, education, or type of surgery. The video intervention was positively received, but the majority (80%) still stored their pills unsecured. CONCLUSIONS: Results demonstrate that a video intervention addressing safe storage and disposal practices of unused opioids is feasible, and more research is needed to determine efficacy in increasing rates of secure storage and disposal of unused opioid pills.


Assuntos
Analgésicos Opioides/uso terapêutico , Dor Pós-Operatória/tratamento farmacológico , Educação de Pacientes como Assunto , Adulto , Armazenamento de Medicamentos , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Gravação em Vídeo
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