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1.
Transl Lung Cancer Res ; 13(4): 785-798, 2024 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-38736502

RESUMO

Background: With novel therapies, more individuals are living longer with lung cancer (LC). This study aimed to understand the impacts of LC on life domains such as employment, finances, relationships, and healthcare needs. Methods: Individuals 18+, diagnosed with LC, 6-24 months post-treatment were recruited through an Australian LC cohort study (Embedding Research and Evidence in Cancer Healthcare-EnRICH). Demographic, clinical, quality-of-life and distress data were obtained through the EnRICH study database. Participants completed telephone interviews. Qualitative data were analysed via Framework methods. Results: Twenty interviews (10 females) were conducted. Most participants were diagnosed with advanced LC (Stage III =8, Stage IV =6), and were on average 17 (range, 10-24) months post-diagnosis. Four themes related to "carrying on with life" as a LC survivor were identified: (I) the winding path back to work: those working pre-diagnosis discussed challenges of maintaining/returning to employment, and the meaning and satisfaction derived from work. (II) Vulnerability versus protection: managing the financial impacts of LC: wide variations in financial impacts, some described lost income and high healthcare expenses, others felt financially protected. (III) Connection and loneliness: navigating relationships as a survivor: some experienced lost friendships due to their diagnosis, others noted more meaningful connections. (IV) Still under the umbrella: healthcare during survivorship: participants noted the importance of ongoing oncology team connection and the vital role of cancer care coordinators. Conclusions: Many individuals living with LC want to "carry on" with life. Participants spoke of challenges and opportunities across life domains of relationships, work, and finances, and noted the importance of continued specialist healthcare throughout survivorship.

2.
JMIR Med Educ ; 10: e50118, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38630531

RESUMO

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.


Assuntos
Cuidadores , Neoplasias , Humanos , Escolaridade , Oncologia , Aprendizagem , Internet , Neoplasias/terapia
3.
Patient Educ Couns ; 124: 108251, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38626502

RESUMO

OBJECTIVES: Many oncology health professionals (HPs) report communicating with carers as complex; and receive limited carer-relevant training. We developed an online HP education program for supporting and managing carer involvement (eTRIO). We aimed to assess whether HPs' self-efficacy in carer communication, knowledge, and decision-making preferences improve following eTRIO. Satisfaction and implementation potential were assessed. METHODS: This type 1 hybrid effectiveness-implementation study used a pre-post single arm intervention design. HPs completed baseline measures, the eTRIO online module, and measures at 1- and 12-weeks post-intervention. Measures included: self-efficacy in carer communication (13-items), applied knowledge (7-items), preference for carer involvement in decisions (1-item). Fifteen of participants completed feedback interviews which underwent thematic analysis. User analytics were collected and analysed. RESULTS: Fifty-six HPs completed baseline measures, 42 completed post- and follow-up measures. At baseline mean self-efficacy score was 88. HPs showed a statistically significant increase in self-efficacy post-intervention (mean = 105.8, CI [12.99, 20.47]), maintained at 12-weeks (mean = 101.1, CI [8.00, 15.72]). There were no changes in knowledge or decision-making preferences. Program engagement and satisfaction were high, 86.7% participants rated eTRIO as very/extremely helpful. CONCLUSIONS AND PRACTICE IMPLICATIONS: eTRIO provided HPs with confidence to effectively engage with carers and manage complex situations such as family dominance. These gains are noteworthy, as conflict with families/carers contributes to HP burnout.


Assuntos
Cuidadores , Comunicação , Autoeficácia , Humanos , Feminino , Masculino , Cuidadores/psicologia , Adulto , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Avaliação de Programas e Projetos de Saúde , Tomada de Decisões , Intervenção Baseada em Internet , Oncologia
5.
BMC Cancer ; 23(1): 774, 2023 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-37700229

RESUMO

BACKGROUND: Pain is a common, debilitating, and feared symptom, including among cancer survivors. However, large-scale population-based evidence on pain and its impact in cancer survivors is limited. We quantified the prevalence of pain in community-dwelling people with and without cancer, and its relation to physical functioning, psychological distress, and quality of life (QoL). METHODS: Questionnaire data from participants in the 45 and Up Study (Wave 2, n = 122,398, 2012-2015, mean age = 60.8 years), an Australian population-based cohort study, were linked to cancer registration data to ascertain prior cancer diagnoses. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for bodily pain and pain sufficient to interfere with daily activities (high-impact pain) in people with versus without cancer, for 13 cancer types, overall and according to clinical, personal, and health characteristics. The relation of high-impact pain to physical and mental health outcomes was quantified in people with and without cancer. RESULTS: Overall, 34.9% (5,436/15,570) of cancer survivors and 31.3% (32,471/103,604) of participants without cancer reported bodily pain (PR = 1.07 [95% CI = 1.05-1.10]), and 15.9% (2,468/15,550) versus 13.1% (13,573/103,623), respectively, reported high-impact pain (PR = 1.13 [1.09-1.18]). Pain was greater with more recent cancer diagnosis, more advanced disease, and recent cancer treatment. High-impact pain varied by cancer type; compared to cancer-free participants, PRs were: 2.23 (1.71-2.90) for multiple myeloma; 1.87 (1.53-2.29) for lung cancer; 1.06 (0.98-1.16) for breast cancer; 1.05 (0.94-1.17) for colorectal cancer; 1.04 (0.96-1.13) for prostate cancer; and 1.02 (0.92-1.12) for melanoma. Regardless of cancer diagnosis, high-impact pain was strongly related to impaired physical functioning, psychological distress, and reduced QoL. CONCLUSIONS: Pain is common, interfering with daily life in around one-in-eight older community-dwelling participants. Pain was elevated overall in cancer survivors, particularly for certain cancer types, around diagnosis and treatment, and with advanced disease. However, pain was comparable to population levels for many common cancers, including breast, prostate and colorectal cancer, and melanoma.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias Colorretais , Melanoma , Masculino , Humanos , Pessoa de Meia-Idade , Qualidade de Vida , Estudos de Coortes , Austrália/epidemiologia , Dor/epidemiologia , Dor/etiologia
6.
J Cancer Surviv ; 2023 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-37495907

RESUMO

PURPOSE: Lung cancer remains underrepresented in cancer survivorship research. This study aimed to understand survivors' physical/psychological challenges, experiences of immunotherapy (IO) and targeted therapy (TT), and psychological adjustment through application of the Roberts et al. (2017) advanced cancer adaptation of Folkman and Greer's appraisal and coping model. METHODS: Adults 6-24 months post-initial treatment completion were recruited via an Australian cohort study. Participant demographic, clinical, quality of life, and distress data were obtained through the cohort database. Qualitative interviews were conducted and analyzed using Framework methods. Roberts et al. (2017)'s model informed data interpretation and presentation. RESULTS: Twenty interviews were conducted (10 females; average age 69 years). Participants' diagnostic stages varied (stage I = 2, stage II = 4, stage III = 8, stage IV = 6); most had received IO/TT (n = 14) and were on average 17 months (range 10-24) post-diagnosis. Three themes were identified and mapped to the Roberts' framework: (1) Ongoing illness events: most participants reported functioning well despite ongoing physical effects. Those on IO/TT reported side effects; some were unexpected/serious. (2) Adjusting to life with lung cancer: most expressed hope for the future while simultaneously preparing for disease progression. Those receiving IO/TT experienced uncertainty given limited survival information. (3) Learning to live with lung cancer: participants described emotion, problem, and meaning based on coping strategies. CONCLUSIONS: Findings may guide development of supportive care resources/interventions focused on uncertainty, IO/TT communication and decision-making, and coping. IMPLICATIONS FOR CANCER SURVIVORS: Many people with lung cancer are living well with their ongoing illness. Despite challenges, many survivors are adapting to issues as they arise and are maintaining a sense of hope and optimism.

7.
Patient Educ Couns ; 111: 107677, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36857803

RESUMO

OBJECTIVE: To identify patient-related characteristics considered to affect patient involvement in shared decision making (SDM) about treatment. METHODS: We conducted a scoping review of qualitative studies. We searched for literature across seven databases until March 2022, and included qualitative studies that focused on associations between patient-related characteristics and SDM about treatment in adults. We analyzed studies using an inductive thematic approach. RESULTS: The search yielded 5948 articles, of which 70 were included. We identified many different patient-related characteristics, which we grouped into four categories related to: (1) the individual who is facing the decision, (2) the decision, (3) the relationship between the patient and the clinician and others involved in the decision, and (4) the healthcare context. CONCLUSIONS: Studies report a variety of patient-related characteristics that may affect patient involvement in SDM. Amongst others, patients may need to feel informed, to understand their role in SDM, and be able to communicate. Involvement may be challenging with characteristics such as perceived time pressure, poor patient-clinician relationships, emotional distress, and severe illness. PRACTICE IMPLICATIONS: In order to truly involve patients in SDM, we might need to focus on characteristics such as patient emotions and relationship building, besides information provision and values clarification.


Assuntos
Tomada de Decisão Compartilhada , Angústia Psicológica , Adulto , Humanos , Participação do Paciente , Tomada de Decisões , Emoções
8.
Eur J Oncol Nurs ; 63: 102265, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36804325

RESUMO

PURPOSE: Qualitative research examining healthcare experiences and needs of people with advanced (metastatic or recurrent) colorectal cancer CRC-A is limited. This study aimed to fill this gap in CRC-A survivors treated with surgical or palliative chemotherapy, through a qualitative study. METHOD: Australian adults treated for CRC-A were recruited 0.5-2 years post-surgery or post-diagnosis of CRC-A (for palliative chemotherapy groups). Semi-structured telephone interviews, analysed via framework analysis, explored healthcare experiences. Demographic, clinical, and quality of life data characterised the sample and informed framework analyses. Data was compared against the Institute of Medicine's framework for quality healthcare. RESULTS: Interviews from 38 participants (22 female) of median age 59 years (range 27-84) revealed six overarching themes relating to the safety, effectiveness, timeliness, patient-centredness, efficiency, and equity of CRC-A care: 1) Early experiences influence later perceptions; 2) Trusting the system, trusting the professionals; 3) The benefits of multidisciplinary care co-ordination; 4) Feeling lost in follow-up; 5) Whose role is it anyway? Gaps in responsibility for survivorship care; and 6) Useful or useless? Perceptions of psychosocial support. CONCLUSIONS: Healthcare systems for CRC-A can be improved through delivery of repeated information, upskilling general practitioners and/or implementing written survivorship care plans or survivorship clinics, to ensure quality healthcare.


Assuntos
Neoplasias Colorretais , Qualidade de Vida , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Austrália , Atenção à Saúde , Neoplasias Colorretais/psicologia , Pesquisa Qualitativa
9.
Patient Educ Couns ; 105(12): 3550-3557, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36096983

RESUMO

OBJECTIVES: People living with multimorbidity often rely on the support of informal family carers, yet challenges frequently arise when carers of people with multimorbidity (PwM) interact with health professionals (HPs) and healthcare systems. This study aimed to provide insights into the experiences and challenges involved in working with carers of PwM, from HPs' perspectives. METHODS: Twenty-one HPs (11 doctors, 5 nurses and 5 allied health professionals) from varying specialities participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using thematic analysis. RESULTS: Five themes were identified: carer involvement makes multimorbidity easier to manage, differing views on HP's responsibilities to carers, multimorbidity makes management harder for HPs, strategies to support carers of PwM, and multimorbidity is one aspect of complexity. CONCLUSIONS: HPs recognise unique needs of carers of PwM, yet perceive challenges addressing these needs and supporting this commonly overlooked group. PRACTICE IMPLICATIONS: The unmet needs of carers of PwM that HPs identified in this study suggest pathways for future improvements and interventions, including HP education and training, and appropriate referral pathways for carers of PwM to access supportive services. Underpinning these findings is the need for greater recognition and respect for the critical work of family carers in healthcare.


Assuntos
Cuidadores , Multimorbidade , Humanos , Pessoal de Saúde , Atenção à Saúde , Poder Psicológico , Pesquisa Qualitativa
10.
Omega (Westport) ; : 302228221121493, 2022 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-36127158

RESUMO

This study aimed to examine coping strategies used by advanced colorectal cancer (CRC-A) survivors to manage death anxiety and fear of cancer progression, and links between these strategies and quality of life (QoL), distress, and death acceptance. Qualitative semi-structured interviews of 38 CRC-A survivors (22 female) were analysed via framework analysis. QoL and distress were assessed through the FACT-C and Distress Thermometer. Eleven themes were identified and mapped to active avoidance (keeping busy and distracted), passive avoidance (hoping for a cure), active confrontation (managing negative emotions; reaching out to others; focusing on the present; staying resilient), meaning-making (redefining one's identity; contributing to society; gaining perspective; remaining spiritual), and acceptance (accepting one's situation). Active confrontation (specifically utilising informal support networks) and meaning-making appeared beneficial coping strategies; more research is needed to develop and evaluate interventions which increase CRC-A survivors' use of these strategies to manage and cope with their death anxiety.

11.
Patient Educ Couns ; 105(11): 3298-3305, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35989203

RESUMO

OBJECTIVE: The Concerns about Late Effects in Oncology (CLEO) questionnaire was developed to measure concerns cancer survivors may have about late effects. The current study sought to assess the Concerns about Late Effects in Oncology's (CLEO) psychometric properties - factor structure, construct validity, discriminatory power, and internal consistency. METHODS: 147 breast cancer survivors completed a survey. Factor structure was determined by exploratory factor analysis (EFA). Construct validity was assessed against fear of cancer recurrence, anxiety, depression, quality of life, and neuroticism. Discriminatory power was assessed against participants' age and clinical characteristics. RESULTS: The EFA confirmed a 4-factor structure; health professionals' support, psychological impacts, adapting, and daily functional impacts. There was only partial support for construct validity and discriminatory power. The CLEO demonstrated excellent internal consistency, with an overall Cronbach's α = 0.87 (health professionals' support: α = 0.89, psychological impacts: α = 0.93, adapting: α = 0.82, and daily functional impacts: α = 0.89). CONCLUSION: The findings suggest further development of the CLEO should focus on the psychological and functional impacts of late effects. PRACTICE IMPLICATIONS: Use of the CLEO may enhance communication about the impact of late effects, ensuring earlier identification and management of late effects in this population.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Feminino , Humanos , Recidiva Local de Neoplasia , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários
12.
Support Care Cancer ; 30(11): 9057-9069, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35972645

RESUMO

PURPOSE: Continuing employment or returning to work (RTW) as a cancer survivor can be meaningful and financially necessary, yet challenging. However, there is a lack of qualitative research on RTW experiences and financial wellbeing of people with advanced colorectal cancer (CRC-A). This study aimed to fill this gap. METHODS: Adults treated for CRC-A were recruited 0.5-2 years post-surgery (or post-diagnosis of CRC-A for palliative chemotherapy participants). Semi-structured telephone interviews, exploring RTW and finances, were subjected to framework analysis. Demographic, clinical, and quality of life data (FACT-C, Distress Thermometer, COST measure) were collected to characterise the sample and inform the framework analysis. RESULTS: Analysis of 38 interviews revealed five overarching themes: work as a struggle, work as my identity, work as my saviour, work as a financial necessity, and employer and colleague response. Many survivors with CRC-A desired to, and had the capacity to, continue work or RTW, yet faced unique challenges from compounded stigma of both cancer and toileting issues. Inability to RTW negatively impacted financial and psychosocial wellbeing. Workplace support was an important facilitator of RTW. CONCLUSION: For survivors with CRC-A, continuing or RTW is fraught with challenges, including physical functioning challenges, financial anxiety, and unsupportive workplace environments. Survivors require psychosocial, financial, and employer support to manage these difficulties. This paper recommends a multiprong approach, including education programmes (facilitated through workers' union groups, human resource institutions, and/or large consumer CRC groups) and policies, to support workers and for employers to understand the unique challenges of employees with CRC-A.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais , Adulto , Humanos , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Emprego/psicologia , Sobreviventes/psicologia , Pesquisa Qualitativa , Local de Trabalho/psicologia
13.
Eur J Oncol Nurs ; 58: 102123, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35429695

RESUMO

PURPOSE: Modern treatments, including surgery and palliative chemotherapy without surgery, enable longer survival for people with advanced/recurrent colorectal cancer (CRC). Qualitative research comparing the physical and psychosocial outcomes of these different treatments is lacking. This study therefore aimed to explore and compare the physical and psychosocial challenges and survivorship experiences of people who receive different treatments for advanced CRC, through a qualitative study. METHOD: Adults with CRC who have undergone treatment for advanced/recurrent CRC were recruited 0.5-2 years post-surgery or, for palliative chemotherapy participants, 0.5-2 years post-diagnosis of advanced CRC. Qualitative semi-structured telephone interviews, analysed via framework analysis, explored quality of life (QoL) experiences. Demographic, clinical, and QoL data (Functional Assessment of Cancer Therapy - Colorectal (FACT-C), Distress Thermometer) were collected to characterise the sample and inform the framework analysis. RESULTS: A diverse sample of 38 participants (22 female) participated, with ages ranging 27-84 (Median = 59), FACT-C 56-132 (Median = 102), and distress 0-10 (median = 3). Analysis of interviews revealed three overarching themes: 1) the overwhelming impact of protracted, complex illness; 2) compounding and interacting effects of multiple treatments, impacts, and multimorbidity; and 3) the long haul is unpredictable, bumpy, and wearing. These themes reveal that people with advanced CRC experience many challenges due to the complex nature of the illness, its treatment, and side effects. CONCLUSIONS: Survivors require continued multi-disciplinary supportive care throughout follow-up to manage survivorship challenges. Guideline-led survivorship care and routine monitoring of physical and psychosocial wellbeing throughout follow up is imperative to manage patient expectations and support advanced CRC survivors.


Assuntos
Neoplasias Colorretais , Qualidade de Vida , Adulto , Doença Crônica , Neoplasias Colorretais/psicologia , Feminino , Humanos , Recidiva Local de Neoplasia , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Sobreviventes/psicologia
14.
Support Care Cancer ; 30(4): 3563-3572, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35022883

RESUMO

PURPOSE: While an increasing number of women are surviving breast cancer, survivors remain at risk of developing late effects. Late effects are long-term side effects which may emerge months to years after completing active treatment. Survivors may experience chronic worry and concern about the unpredictable and debilitating nature of late effects. This qualitative study aimed to explore the content validity of items included in the first patient-reported outcome measure (PROM) to quantify survivors' concerns about late effects: the Concerns about Late Effects in Oncology Questionnaire (CLEO). METHOD: Items included in the CLEO were informed by a literature review and consultation with expert stakeholders. Breast cancer survivors completed "think aloud" interviews to explore the perceived acceptability, relevance, clarity, and feasibility of the CLEO. Interviews were transcribed verbatim and analyzed using framework analysis. RESULTS: Twenty-eight participants were interviewed. Participants indicated the CLEO was acceptable, relevant to women's experiences of late effects, and easy to use and understand. Of the 55 proposed items, participants endorsed 33 items across six domains and suggested to include one additional item. CONCLUSIONS: These findings suggest the CLEO captured concerns relevant to breast cancer survivors and provides initial validation of items for inclusion in the CLEO. The CLEO may improve communication about late effects in clinical settings and prompt future research into evidence-based interventions for survivors. Future research should assess the relevance of the CLEO items to other cancer populations. The psychometric properties of the CLEO will be evaluated in future stages of questionnaire development.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/terapia , Feminino , Humanos , Psicometria , Inquéritos e Questionários , Sobreviventes
15.
J Cancer Surviv ; 16(2): 461-473, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34008147

RESUMO

PURPOSE: To quantify the relationship of cancer diagnosis to workforce participation in Australia, according to cancer type, clinical features and personal characteristics. METHODS: Questionnaire data (2006-2009) from participants aged 45-64 years (n=163,556) from the population-based 45 and Up Study (n=267,153) in New South Wales, Australia, were linked to cancer registrations to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for non-participation in the paid workforce-in participants with cancer (n=8,333) versus without (n=155,223), for 13 cancer types. RESULTS: Overall, 42% of cancer survivors and 29% of people without cancer were out of the workforce (PR=1.18; 95%CI=1.15-1.21). Workforce non-participation varied substantively by cancer type, being greatest for multiple myeloma (1.83; 1.53-2.18), oesophageal (1.70; 1.13-2.58) and lung cancer (1.68; 1.45-1.93) and moderate for colorectal (1.23; 1.15-1.33), breast (1.11; 1.06-1.16) and prostate cancer (1.06; 0.99-1.13). Long-term survivors, 5 or more years post-diagnosis, had 12% (7-16%) greater non-participation than people without cancer, and non-participation was greater with recent diagnosis, treatment or advanced stage. Physical disability contributed substantively to reduced workforce participation, regardless of cancer diagnosis. CONCLUSIONS: Cancer survivors aged 45-64 continue to participate in the workforce. However, participation is lower than in people without cancer, varying by cancer type, and is reduced particularly around the time of diagnosis and treatment and with advanced disease. IMPLICATIONS FOR CANCER SURVIVORS: While many cancer survivors continue with paid work, participation is reduced. Workforce retention support should be tailored to survivor preferences, cancer type and cancer journey stage.


Assuntos
Sobreviventes de Câncer , Neoplasias da Próstata , Austrália/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Recursos Humanos
16.
Eur J Oncol Nurs ; 54: 102024, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34536790

RESUMO

PURPOSE: The information women receive about the type and timing of breast reconstruction (BR) from healthcare providers is crucial to help them make an informed decision, and this is particularly important in complex cases and/or high-risk cases. This study sought to provide qualitative insights into Australian women's BR decision-making experiences. METHOD: Twenty-nine women who had received a mastectomy and made decisions about BR, including the type (expander, implant and/or autologous) and timing (immediate, delayed or immediate-delayed), participated in semi-structured telephone interviews. Interviews were analysed thematically using the Framework method. RESULTS: Seven themes were identified: 1) information provision and needs; 2) values and preferences; 3) pressure to decide; 4) feasibility (e.g. clinical and/or financial factors); 5) social influence and support; 6) multidisciplinary team and organisational structures; and 7) decision implementation and outcomes. Breast care nurse support, as well as collaboration and communication within multidisciplinary teams were perceived by women as facilitating the BR decision-making process. CONCLUSIONS: The identified themes offer an in-depth explanation of how a sample of Australian women make BR decisions. The current findings highlight the often limited clinician-patient information-sharing and demonstrate the overarching influence of the multidisciplinary medical team and organisational structures on BR decision-making. Development of in-consult decision-aids and strategies to improve multidisciplinary care are discussed.


Assuntos
Neoplasias da Mama , Mamoplastia , Austrália , Neoplasias da Mama/cirurgia , Tomada de Decisões , Feminino , Humanos , Mastectomia
17.
Psychooncology ; 30(10): 1745-1755, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34038008

RESUMO

OBJECTIVE: As many men diagnosed with prostate cancer (PC) are now living well beyond diagnosis and treatment, these survival gains necessitate improved understanding of long-term survivorship experiences. This is the first qualitative study that aimed to provide insights into PC survivors' adjustment to diagnosis and any persisting or emerging cancer/treatment-related issues over 15+ years. METHODS: Semi-structured interviews were conducted with 37 men purposively sampled from the 15-year follow-up phase of a population-wide cohort study, the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Interview data were transcribed and thematically analysed applying a framework methodology. RESULTS: The majority of participating men (88.6%) had been diagnosed with localised disease and were treated with radical prostatectomy as primary treatment (54.1%). Four main interconnecting themes relating to men's long-term survivorship experience with PC were identified: (1) Survivorship reflections, (2) interactions with the healthcare system, (3) personal and social relationships and (4) dominant coping strategies. Many men reported gaps along the continuum of care and a feeling of abandonment across their long-term survivorship, encompassed by a perceived lack of psychosocial and informational support for persisting treatment side-effects, especially sexual dysfunction. Receiving adequate survivorship care and trusting patient-clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer-related long-term challenges and personal limitations. CONCLUSIONS: Long-term PC survivors continue to experience lasting treatment impacts, with many men reporting unmet needs and a lack of continuity of multidisciplinary care. Implementation of coordinated and tailored survivorship care and shared care pathways with multidisciplinary practitioners will facilitate men's improved engagement and timely access to supportive care interventions, helping to avoid the 'survivorship abyss'.


Assuntos
Sobreviventes de Câncer , Neoplasias da Próstata , Estudos de Coortes , Humanos , Masculino , Neoplasias da Próstata/terapia , Qualidade de Vida , Sobreviventes , Sobrevivência
18.
Patient Educ Couns ; 104(12): 3023-3031, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33941422

RESUMO

OBJECTIVE: Given the stressful and emotional nature of cancer, challenging interactions between nurses, patients, and family frequently occur. Nurses are rarely equipped with strategies to avoid or de-escalate stressful situations with carers, which can include displays of conflict, anger, or dominance. A brief online education module (TRIO-Conflict) was developed to provide nurses with management strategies to use in situations of conflict. This study aimed to assess the feasibility, acceptability, and potential efficacy of TRIO-Conflict. METHODS: Nurses were recruited through an Australian breast cancer organisation (McGrath Foundation). Participants completed pre/post module measures of attitudes towards carers, confidence in their skills to effectively navigate challenging interactions with carers, and applied knowledge of management strategies. Data were analysed using Wilcoxon signed-rank tests. Qualitative feedback was analysed using content analysis. RESULTS: 52 nurses completed pre-/post- measures, with 4 semi-structured interviews conducted. Significant improvements in attitudes towards carers (p = .010) and confidence in one's own ability to manage challenging interactions with carers (p < .001) were found, but not knowledge of strategies. Most nurses found TRIO-Conflict very/extremely helpful (87%) and were satisfied with content (94%) and usability (93%). CONCLUSION: TRIO-Conflict utilised evidence-based learning techniques (provision of example phrases, video vignettes, reflective exercises) to improve nurses attitudes and confidence. PRACTICE IMPLICATIONS: TRIO-Conflict is a brief, targeted, clinically relevant, and easily accessible online training programme which could be widely disseminated to oncology nurses.


Assuntos
Neoplasias da Mama , Educação a Distância , Enfermeiras e Enfermeiros , Austrália , Neoplasias da Mama/terapia , Cuidadores , Feminino , Humanos , Projetos Piloto
19.
Eur J Cancer Care (Engl) ; 30(4): e13421, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33733545

RESUMO

INTRODUCTION: With rapid changes in treatments for colorectal cancer (CRC), qualitative research into CRC survivorship requires greater synthesis. This paper aims to fill this gap through a systematic review (PROSPERO CRD42019131576) and thematic synthesis of the qualitative literature on survivorship experiences across early-stage and advanced CRC survivors. METHODS: CINAHL, Embase, MEDLINE, PsycINFO and PubMed were searched for qualitative CRC survivorship papers. Titles, abstracts and full texts were screened. Included articles (n = 81) underwent data extraction, CASP qualitative bias ratings and thematic synthesis. RESULTS: Bowel dysfunction caused functional limitations and negative quality of life (QoL), while stomas posed threats to body image and confidence. Physical symptoms hindered return to work, increasing financial burdens. Survivors' unmet needs included information regarding symptom expectations and management, and ongoing support throughout recovery. Advanced and early-stage survivors shared similar experiences. Advanced survivors struggled with fear of cancer recurrence/progression and feelings of powerlessness. Functional limitations, financial impacts and sexuality in advanced survivors were underexplored areas. CONCLUSION: CRC and its treatments impact survivors' QoL in all areas. A coordinated supportive care response is required to address survivors' unmet needs. Future qualitative studies should explore advanced CRC subpopulations, treatment-specific impacts on QoL and long-term (>5 years) impacts on CRC survivors.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais , Neoplasias Colorretais/terapia , Humanos , Pesquisa Qualitativa , Qualidade de Vida , Sobrevivência
20.
BMC Med ; 18(1): 372, 2020 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-33256726

RESUMO

BACKGROUND: Improved survival means that cancer is increasingly becoming a chronic disease. Understanding and improving functional outcomes are critical to optimising survivorship. We quantified physical and mental health-related outcomes in people with versus without cancer, according to cancer type. METHODS: Questionnaire data from an Australian population-based cohort study (45 and Up Study (n = 267,153)) were linked to cancer registration data to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for adverse person-centred outcomes-severe physical functional limitations (disability), moderate/high psychological distress and fair/poor quality of life (QoL)-in participants with versus without cancer, for 13 cancer types. RESULTS: Compared to participants without cancer (n = 244,000), cancer survivors (n = 22,505) had greater disability (20.6% versus 12.6%, respectively, PR = 1.28, 95%CI = (1.25-1.32)), psychological (22.2% versus 23.5%, 1.05 (1.02-1.08)) and poor/fair QoL (15.2% versus 10.2%; 1.28 (1.24-1.32)). The outcomes varied by cancer type, being worse for multiple myeloma (PRs versus participants without cancer for disability 3.10, 2.56-3.77; distress 1.53, 1.20-1.96; poor/fair QoL 2.40, 1.87-3.07), lung cancer (disability 2.81, 2.50-3.15; distress 1.67, 1.46-1.92; poor/fair QoL 2.53, 2.21-2.91) and non-Hodgkin's lymphoma (disability 1.56, 1.37-1.78; distress 1.20, 1.05-1.36; poor/fair QoL 1.66, 1.44-1.92) and closer to those in people without cancer for breast cancer (disability 1.23, 1.16-1.32; distress 0.95, 0.90-1.01; poor/fair QoL 1.15, 1.05-1.25), prostate cancer (disability 1.11, 1.04-1.19; distress 1.09, 1.02-1.15; poor/fair QoL 1.15, 1.08-1.23) and melanoma (disability 1.02, 0.94-1.10; distress 0.96, 0.89-1.03; poor/fair QoL 0.92, 0.83-1.01). Outcomes were worse with recent diagnosis and treatment and advanced stage. Physical disability in cancer survivors was greater in all population subgroups examined and was a major contributor to adverse distress and QoL outcomes. CONCLUSIONS: Physical disability, distress and reduced QoL are common after cancer and vary according to cancer type suggesting priority areas for research, and care and support.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/epidemiologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/epidemiologia , Idoso , Idoso de 80 Anos ou mais , Austrália , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Inquéritos e Questionários , Sobrevivência
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