RESUMEN
PURPOSE: Guided by the Intersectionality Framework, we examined the differential in breast cancer care experience across population subgroups in England. METHODS: Secondary data analysis using the 2017/2018 National Cancer Patient Experience Surveys. We used disaggregated descriptive statistics (mean, standard errors, 95% confidence interval) to analyse 26,030 responses from female breast cancer patients to a question relating to overall care experience categorised by age, ethnicity, and sexual orientation in their intersection with social position. We then used logistic regression to investigate the odds (Odds Ratio (OR), 95% confidence intervals) of reporting positive care experience adjusting for patient, clinical, and Trust level factors. RESULTS: Poorer care experience was predominantly reported by the most deprived younger and minoritised ethnic groups. Statistically significant findings were observed in adjusted multivariable analyses. Compared to patients aged 65-74 years, younger respondents were less likely to rate their care favourably (16-34 years old ORadj. = 0.55 (0.36-0.84). Compared to White British, Asian (ORadj. = 0.51 (0.39-0.66)) and Black African women (ORadj. = 0.53 (0.33-0.88)) were less likely to rate their care favourably. The least affluent respondents were less likely to rate their care favourably (ORadj. = 0.79 (0.64-0.97)). CONCLUSION: There is evidence of inequity in overall cancer care experience among female breast cancer patients in England, particularly among women living at the specific intersection of age, ethnicity, and socioeconomic position. Future research is necessary to understand the mechanisms underlying breast cancer inequities. Policymakers, commissioners, and providers should consider the existence of multiple forms of marginalisation to inform improvement initiatives targeting patients at higher risk of vulnerability.
RESUMEN
PURPOSE: Early treatment is advised for breast cancer-related arm lymphoedema (BCRL), a common sequelae of breast cancer treatment. Expert guidance recommends two-phase decongestive lymphoedema treatment (DLT), although evidence is lacking for current treatment protocols and UK women are routinely offered self-treatment with hosiery. This systematic review considered evidence regarding treatment of early BCRL, that is, within 12 months of developing BCRL. METHODS: A systematic review of evidence for clinical effectiveness of DLT for women with less than 12-month BCRL duration (early BCRL) was undertaken using the Joanna Briggs Institute (JBI) method. Studies included women with < 12-month or mean < 9-month BCRL duration; some studies reported only one eligible group. The original search was conducted in 2016 and updated in 2018 and 2022. Methodological quality of identified studies was assessed using JBI critical appraisal instruments. Outcomes of interest were extracted with eligible results displayed in narrative and tabular format. Strength of evidence was rated using the GRADE system. RESULTS: Seven trials and three descriptive studies provided weak evidence (grade B) for effectiveness of DLT for early BCRL. Heterogeneous protocols limited comparison of findings. There was no evidence for the most effective treatment or treatment combination or optimal frequency or duration of treatment. CONCLUSION: There is no evidence to justify change in current lymphoedema treatment, whether self-treatment with hosiery (UK) or two-phase DLT (other countries). Further research for the early BCRL population is required. IMPLICATIONS FOR CANCER SURVIVORS: Women with early BCRL require early and effective treatment although this updated review shows there is still no evidence for what that treatment should be.
Asunto(s)
Linfedema del Cáncer de Mama , Humanos , Femenino , Linfedema del Cáncer de Mama/terapia , Linfedema del Cáncer de Mama/etiología , Neoplasias de la Mama/complicaciones , Linfedema/etiología , Linfedema/terapia , BrazoRESUMEN
PROBLEM IDENTIFICATION: We summarised the international evidence relating to the role of intersectionality in patients' lived experience of inequities along the cancer care pathway. We produced guidance to use intersectionality in future research. LITERATURE SEARCH: We included 42 articles published between 1989 to 2023 that used intersectionality to guide the study and interpretation of inequities in cancer care. DATA EVALUATION/SYNTHESIS: Articles predominantly comprised North American (n = 37), followed by European (n = 4) and Asian (n = 1) studies. Similar compounding effects of racism, homophobia, and discrimination across countries exacerbated inequities in cancer care experience and cancer outcomes particularly for women of color and sexual/gender minority groups. Professionals' knowledge, attitudes, and behaviors toward minoritised groups affected patient-provider relationships and influenced cancer patients' psychosocial responses. CONCLUSION: Intersectionality provides a framework to assess the personal, interpersonal, and structural processes through which cancer inequities manifest within and across countries.
RESUMEN
BACKGROUND: Interest in the application of predictive risk models (PRMs) in health care to identify people most likely to experience disease and treatment-related complications is increasing. In cancer care, these techniques are focused primarily on the prediction of survival or life-threatening toxicities (eg, febrile neutropenia). Fewer studies focus on the use of PRMs for symptoms or supportive care needs. The application of PRMs to chemotherapy-related symptoms (CRS) would enable earlier identification and initiation of prompt, personalized, and tailored interventions. While some PRMs exist for CRS, few were translated into clinical practice, and human factors associated with their use were not reported. OBJECTIVE: We aim to explore patients' and clinicians' perspectives of the utility and real-world application of PRMs to improve the management of CRS. METHODS: Focus groups (N=10) and interviews (N=5) were conducted with patients (N=28) and clinicians (N=26) across 5 European countries. Interactions were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: Both clinicians and patients recognized the value of having individualized risk predictions for CRS and appreciated how this type of information would facilitate the provision of tailored preventative treatments or supportive care interactions. However, cautious and skeptical attitudes toward the use of PRMs in clinical care were noted by both groups, particularly in relationship to the uncertainty regarding how the information would be generated. Visualization and presentation of PRM information in a usable and useful format for both patients and clinicians was identified as a challenge to their successful implementation in clinical care. CONCLUSIONS: Findings from this study provide information on clinicians' and patients' perspectives on the clinical use of PRMs for the management of CRS. These international perspectives are important because they provide insight into the risks and benefits of using PRMs to evaluate CRS. In addition, they highlight the need to find ways to more effectively present and use this information in clinical practice. Further research that explores the best ways to incorporate this type of information while maintaining the human side of care is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081.
Asunto(s)
Grupos Focales , Humanos , Masculino , Femenino , Persona de Mediana Edad , Antineoplásicos/efectos adversos , Antineoplásicos/uso terapéutico , Adulto , Anciano , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Medición de Riesgo/métodos , Entrevistas como Asunto , Actitud del Personal de Salud , Investigación Cualitativa , PercepciónRESUMEN
BACKGROUND: Annually, approximately five per cent of dependent children - aged under eighteen years - in the United Kingdom (UK), experience parental death. Nurses and social workers caring for parents with life-limiting illnesses, including cancer, help families support their children. However, these professionals have been found to lack confidence and competence in fulfilling this role. METHODS: We conducted three rounds of a classic-Delphi survey to identify and measure a panel of topic experts' consensus on the priorities and issues for nurses and social workers when supporting families and children through parental death. The Delphi survey was conducted with a panel of UK topic experts (n=43) including lead health and social care professionals (n=30), parents bereaved of a partner whilst parenting dependent children (n=6), academics (n=4) and bereaved young adults (n=3). RESULTS: Ninety per cent (n=18/20) of the issues for nurses and social workers and all (7/7) of the priorities rated and ordered in the survey achieved consensus. Key priorities were 1) training in opening conversations with families about dependent children, 2) training and support for nurses and social workers to manage their own and others' emotions arising from conversations with parents about children's needs regarding parental death, and 3) increasing nurses' and social workers' knowledge of sources of information to support families before the death of a parent. CONCLUSION: We identified priorities for UK nurses and social workers. Further research is needed to identify which of these nurses and social workers would benefit most from support, and how any resultant interventions could enhance confidence and competence in helping families to support children through parental death.
Asunto(s)
Técnica Delphi , Trabajadores Sociales , Humanos , Trabajadores Sociales/psicología , Reino Unido , Adulto , Femenino , Masculino , Enfermeras y Enfermeros/psicología , Encuestas y Cuestionarios , Muerte Parental/psicología , Niño , Competencia Clínica/normas , Persona de Mediana EdadRESUMEN
OBJECTIVES: To evaluate how the codesigned training programme, 'No conversation too tough', can help cancer, palliative and wider healthcare professionals support patients to communicate with their dependent children when a parent is dying. We examined perceptions of learning provided by the training, its contribution to confidence in communicating with families when a parent is dying, and subjective experience of, and reactions to, the training. We also explored potential changes in practice behaviours. DESIGN: Pre-post, convergent, parallel, mixed-methods study. Motivations for practice change were measured quantitatively, and qualitatively through semi-structured interviews. Non-parametric analysis was conducted for self-efficacy and outcome expectancy measures; descriptive statistics examined perceptions of usefulness; intentions to use learning in practice and reactions to the training. Semi-structured interviews examined motivations and perceptions of learning in depth. A 6-week, practice log recorded immediate practice effects and reflections. SETTING: 1-day training delivered 3 times, total delegates 36: online December 2021, February 2022, face-to-face March 2022. Questionnaires delivered correspondingly in online or paper formats, semi-structured interviews online. PARTICIPANTS: Pre-post: palliative care professionals (n=14/12), acute cancer clinical nurse specialists (n=16/11), other healthcare professionals (n=5/5). RESULTS: Positive changes were observed in self-efficacy (17 of 19 dimensions p<0.003) and outcome expectancies (3 of 14 beliefs p<0.036). Perceptions of usefulness and intentions to use learning in practice mean scores were 82-94 (scales 0=low to 100=high). There was high affirmation for sharing learning and influencing change in the workplace and wider practice. Content, style and delivery were positively endorsed. Further elements to be included in the training were identified. CONCLUSIONS: The training programme has the potential to effect change in practice behaviours. A large-scale study will evaluate the roll-out of the training delivered to individual professionals and whole teams across the UK. It will provide longer-term feedback to understand practice behaviour and mediators of change across professional roles.
Asunto(s)
Cuidados Paliativos , Humanos , Reino Unido , Masculino , Femenino , Técnicos Medios en Salud/educación , Adulto , Padres/psicología , Padres/educación , Comunicación , Actitud del Personal de Salud , Personal de Salud/educación , Personal de Salud/psicología , Niño , Encuestas y Cuestionarios , Persona de Mediana Edad , Evaluación de Programas y Proyectos de SaludRESUMEN
OBJECTIVES: To show how people with cancer, including those with advanced breast cancer, engage with information and self-management and how cancer nurses can support patients to manage important aspects of care. Epstein and Street's patient-centered communication in cancer care (PCC) model provides a useful framework. The model incorporates six domains representing core mediating functions of patient-centered communication (Fostering healing relationships, Exchanging information, Responding to emotions, Managing uncertainty, Making decisions, and Enabling self-management) and additional moderating factors for PCC and health outcomes. DATA SOURCES: Data sources include peer-reviewed articles sourced from electronic databases. CONCLUSION: Common complex interrelated reasons for poor engagement include fear, denial, fatalism, bereavement, advanced disease, and poor clinician-patient relationships. This can have serious implications for physical and emotional outcomes. Facilitators include open, trusting relationships between patients and nurses, timing of information, focusing on patients' agendas, and understanding emotional concerns, beliefs, and motivations. Supporting patients and carers to work together, through evidence-based interventions and tailoring approaches, for example to older people, are important. IMPLICATIONS FOR NURSING PRACTICE: Patient information and engagement are important aspects of cancer nursing. Interventions are largely based on behavior change theory, but new translational research is needed to demonstrate effectiveness. Nurses need education on how to develop skills to effectively manage this complex process to effectively engage and educate patients.
Asunto(s)
Neoplasias de la Mama , Humanos , Anciano , Femenino , Neoplasias de la Mama/terapia , Rol de la Enfermera , Educación del Paciente como Asunto , Cuidadores , ComunicaciónRESUMEN
OBJECTIVES: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. DESIGN: Scoping review. SEARCH STRATEGY: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner's decision-making and their psychosocial outcomes during and after pregnancy. DATA EXTRACTION AND SYNTHESIS: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal's self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. RESULTS: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. CONCLUSIONS: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.
Asunto(s)
Neoplasias de la Mama , Lactante , Embarazo , Femenino , Humanos , Oncología Médica , Bases de Datos Factuales , Progresión de la Enfermedad , FamiliaRESUMEN
INTRODUCTION: Persistent inequalities in cancer care and cancer outcomes exist within and between countries. However, the evidence pertaining to the root causes driving cancer inequalities is mixed. This may be explained by the inadequate attention paid to experiences of patients with cancer living at the intersection of multiple social categories (eg, social class, ethnicity). This is supported by the intersectionality framework. This framework offers an alternative lens through which to analyse and understand how these interlocking systems of oppression uniquely shape the experiences of patients with cancer and drive inequalities. In this protocol, we outline a scoping review that will systematically map what is known about the relationship between intersectionality and inequalities in care experience and cancer outcomes of patients with cancer; and to determine how the intersectionality framework has been applied in studies across the cancer care pathway and across countries. METHODS AND ANALYSIS: This study will be guided by Arksey and O'Malley's, and Levac et al's frameworks for scoping reviews. We will identify and map the evidence on cancer inequalities and intersectionality from 1989 to present date. Electronic databases (EMBASE, PsychINFO, CINAHL, Medline, Web of Science, ProQuest) and a systematic search strategy using a combination of keywords and Boolean operators AND/OR will be used to identify relevant studies. Screening of eligible papers and data extraction will be conducted by two independent reviewers, and disagreements resolved by discussion with the research team. We will use an iterative process to data charting using a piloted form. Findings will be collated into a narrative report. ETHICS AND DISSEMINATION: Ethical approval is not required since data used are from publicly available secondary sources. Findings will be disseminated through peer-reviewed journals, conferences and stakeholder meetings. Further, findings will inform the next phases of a multistage research project aimed at understanding inequalities among patients with breast cancer.
Asunto(s)
Trastornos Mentales , Neoplasias , Humanos , Marco Interseccional , Neoplasias/terapia , Proyectos de Investigación , Revisiones Sistemáticas como AsuntoRESUMEN
OBJECTIVE: Black women in the United Kingdom are more likely than White women to be diagnosed with advanced breast cancer and have lower survival rates. We consulted women of Black Caribbean and Black African descent in the United Kingdom on how the Promoting Early Presentation (PEP) booklet and intervention could be adapted for Black women to promote early presentation with breast cancer symptoms. METHODS: Focus groups with 22 women of Black African and Black Caribbean descent, of whom five had been treated for breast cancer. The participants were recruited from a large UK breast cancer charity and community settings. Data were analysed using Framework Analysis. RESULTS: Four themes summarised the participants' views on how the booklet and intervention could be adapted: Justify the focus on Black women, Black people do not talk about cancer, Make interventions inclusive and engaging, and Engage Black communities to deliver interventions. CONCLUSION: Breast cancer behaviour change interventions need to be more inclusive, illustrate how breast cancer symptoms manifest on black skin, and emphasise that breast cancer is curable to increase awareness and reduce cancer fear. Researchers should involve Black communities in the design and delivery of interventions to address appropriately cultural barriers to early presentation.
Asunto(s)
Neoplasias de la Mama , Femenino , Humanos , Grupos Focales , Población Negra , Reino Unido , Región del CaribeRESUMEN
BACKGROUND: Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying. AIM: To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death. DESIGN: A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data. RESULTS: 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=-5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers. CONCLUSIONS: Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Muerte Parental , Adulto , Niño , Humanos , Cuidados Paliativos , Estudios Transversales , PadresRESUMEN
OBJECTIVE: To evaluate effects of remote monitoring of adjuvant chemotherapy related side effects via the Advanced Symptom Management System (ASyMS) on symptom burden, quality of life, supportive care needs, anxiety, self-efficacy, and work limitations. DESIGN: Multicentre, repeated measures, parallel group, evaluator masked, stratified randomised controlled trial. SETTING: Twelve cancer centres in Austria, Greece, Norway, Republic of Ireland, and UK. PARTICIPANTS: 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin's disease, or non-Hodgkin's lymphoma receiving first line adjuvant chemotherapy or chemotherapy for the first time in five years. INTERVENTION: Patients were randomised to ASyMS (intervention; n=415) or standard care (control; n=414) over six cycles of chemotherapy. MAIN OUTCOME MEASURES: The primary outcome was symptom burden (Memorial Symptom Assessment Scale; MSAS). Secondary outcomes were health related quality of life (Functional Assessment of Cancer Therapy-General; FACT-G), Supportive Care Needs Survey Short-Form (SCNS-SF34), State-Trait Anxiety Inventory-Revised (STAI-R), Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer), and work limitations questionnaire (WLQ). RESULTS: For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, whereas controls reported an increase from cycle 1 onwards (least squares absolute mean difference -0.15, 95% confidence interval -0.19 to -0.12; P<0.001; Cohen's D effect size=0.5). Analysis of MSAS sub-domains indicated significant reductions in favour of ASyMS for global distress index (-0.21, -0.27 to -0.16; P<0.001), psychological symptoms (-0.16, -0.23 to -0.10; P<0.001), and physical symptoms (-0.21, -0.26 to -0.17; P<0.001). FACT-G scores were higher in the intervention group across all cycles (mean difference 4.06, 95% confidence interval 2.65 to 5.46; P<0.001), whereas mean scores for STAI-R trait (-1.15, -1.90 to -0.41; P=0.003) and STAI-R state anxiety (-1.13, -2.06 to -0.20; P=0.02) were lower. CASE-Cancer scores were higher in the intervention group (mean difference 0.81, 0.19 to 1.43; P=0.01), and most SCNS-SF34 domains were lower, including sexuality needs (-1.56, -3.11 to -0.01; P<0.05), patient care and support needs (-1.74, -3.31 to -0.16; P=0.03), and physical and daily living needs (-2.8, -5.0 to -0.6; P=0.01). Other SCNS-SF34 domains and WLQ were not significantly different. Safety of ASyMS was satisfactory. Neutropenic events were higher in the intervention group. CONCLUSIONS: Significant reduction in symptom burden supports the use of ASyMS for remote symptom monitoring in cancer care. A "medium" Cohen's effect size of 0.5 showed a sizable, positive clinical effect of ASyMS on patients' symptom experiences. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the covid-19 pandemic. TRIAL REGISTRATION: Clinicaltrials.gov NCT02356081.
Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica/administración & dosificación , Teléfono Celular , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/diagnóstico , Calidad de Vida , Telemedicina/métodos , Adulto , Anciano , Austria , Neoplasias de la Mama/psicología , Neoplasias de la Mama/terapia , Quimioterapia Adyuvante/efectos adversos , Neoplasias Colorrectales/psicología , Neoplasias Colorrectales/terapia , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/etiología , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/psicología , Femenino , Grecia , Enfermedad de Hodgkin/psicología , Enfermedad de Hodgkin/terapia , Humanos , Irlanda , Linfoma no Hodgkin/psicología , Linfoma no Hodgkin/terapia , Masculino , Persona de Mediana Edad , Noruega , Telemedicina/instrumentación , Resultado del Tratamiento , Reino UnidoRESUMEN
OBJECTIVE: The objective of this scoping review is to identify and map support interventions provided during palliative care to families with dependent children when a parent has a terminal illness. INTRODUCTION: For dependent children, losing a parent through terminal illness can be one of the most traumatic experiences they will face. Without age-appropriate information and support, parental death can lead to unresolved grief, post-traumatic stress, and longer-term negative social, emotional, educational, and behavioral consequences. Support from health care professionals is provided, but challenges within hospice and community palliative care mean the needs of dependent children may not be addressed. Greater emphasis is often placed on children's and families' bereavement needs as opposed to their pre-bereavement needs. The status of pre-bereavement support in palliative care for these families has not been documented. INCLUSION CRITERIA: We will include studies of support interventions provided to families with dependent children when a parent has a terminal illness that are delivered during palliative care and in settings including, but not limited to, hospices, hospitals, and the community (including family and care homes). Empirical, peer-reviewed studies based on qualitative, quantitative, or mixed methods data, and gray literature, reporting any stage of intervention development will be included. METHODS: This review will follow the JBI approach for scoping reviews. Multiple database searches will be conducted. Two authors will independently review full-text articles and extract data. Interventions will be mapped in terms of characteristics, evaluation methods, and implementation challenges. Data will be presented in tables, diagrammatic form, and narrative summary.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Cuidados Paliativos , Padres , Literatura de Revisión como AsuntoRESUMEN
PURPOSE: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. METHOD: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis. RESULTS: Three themes were generated from the data: Changing lives, Changing roles; Confidence in caring, and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes. CONCLUSIONS: This study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened.
Asunto(s)
Cuidadores , Familia , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Adolescente , Adulto , Anciano , Antineoplásicos/uso terapéutico , Cuidadores/psicología , Inglaterra , Familia/psicología , Femenino , Humanos , Entrevistas como Asunto , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Cuidados Paliativos , Relaciones Profesional-Familia , Investigación Cualitativa , Incertidumbre , Adulto JovenRESUMEN
PURPOSE: Due to delivery of chemotherapy being mostly in ambulatory care settings, support of people with cancer relies heavily on caregivers (e.g. relatives). Whilst cancer caregiver research has been flourishing, there has been little focus on the specific experiences of caregivers of older people (>70yrs) with cancer, and little considerations of cultural influences on their experiences. This study explored caregiver experiences and outcomes in the geriatric oncology context in Switzerland. METHODS: Sequential mixed-methods design, comprising a) cross-sectional survey (n = 86/RR52%; age range 37-85) and b) interviews (n = 19) to explore experiences of caregivers of older people (mean age in yrs 74.6 (sd 4.3) with cancer, and factors related to caregivers' psychological morbidity and health related quality of life (HrQoL). RESULTS: Caregivers reported a median of three moderate/high unmet needs (range 0-41) and 44% reported clinically significant psychological morbidity. Demographics (caregiver age, gender, and marital status), caregiving tasks (physical, psycho-emotional, social and/or treatment related care), unmet needs and caregiver burden collectively explained between 20 and 57% of variance in caregiver psychological morbidity and HRQoL. Two main themes emerged from interviews: "Being a caregiver and doing caregiving" and "Living through the situation." These indicated that caregiver roles are multiple and fluid, and identified responsibilities not previously reported outside of palliative care settings, such as thinking about and planning for death and dying. CONCLUSIONS: Caregiving for an older person with cancer can have detrimental impacts on caregivers' wellbeing and quality of life. Consideration needs to be given to the particular needs of caregivers in geriatric oncology settings. Their support needs appear different to those of their counterparts caring for younger people with cancer, notably related to spiritual needs; this may in part relate to possible differences arising from caregivers themselves being older.
Asunto(s)
Cuidadores/psicología , Neoplasias/tratamiento farmacológico , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Calidad de Vida/psicología , Encuestas y Cuestionarios , Suiza , Resultado del TratamientoRESUMEN
OBJECTIVE: To develop a predictive risk model (PRM) for patient-reported anxiety after treatment completion for early stage breast cancer suitable for use in practice and underpinned by advances in data science and risk prediction. METHODS: Secondary analysis of a prospective survey of > 800 women at the end of treatment and again 6 months later using patient reported outcome (PRO) the hospital anxiety and depression scale-anxiety (HADS-A) and > 20 candidate predictors. Multiple imputation using chained equations (for missing data) and least absolute shrinkage and selection operator (LASSO) were used to select predictors. Final multivariable linear model performance was assessed (R2) and bootstrapped for internal validation. RESULTS: Five predictors of anxiety selected by LASSO were HADS-A (Beta 0.73; 95% CI 0.681, 0.785); HAD-depression (Beta 0.095; 95% CI 0.020, 0.182) and having caring responsibilities (Beta 0.488; 95% CI 0.084, 0.866) increased risk, whereas being older (Beta - 0.010; 95% CI -0.028, 0.004) and owning a home (Beta 0.432; 95% CI -0.954, 0.078) reduced the risk. The final model explained 60% of variance and bias was low (- 0.006 to 0.002). CONCLUSIONS: Different modelling approaches are needed to predict rather than explain patient reported outcomes. We developed a parsimonious and pragmatic PRM. External validation is required prior to translation to digital tool and evaluation of clinical implementation. The routine use of PROs and data driven PRM in practice provides a new opportunity to target supportive care and specialist interventions for cancer patients.
RESUMEN
OBJECTIVES: Predictive risk models are advocated in psychosocial oncology practice to provide timely and appropriate support to those likely to experience the emotional and psychological consequences of cancer and its treatments. New digital technologies mean that large scale and routine data collection are becoming part of everyday clinical practice. Using these data to try to identify those at greatest risk for late psychosocial effects of cancer is an attractive proposition in a climate of unmet need and limited resource. In this paper, we present a framework to support the development of high-quality predictive risk models in psychosocial and supportive oncology. The aim is to provide awareness and increase accessibility of best practice literature to support researchers in psychosocial and supportive care to undertake a structured evidence-based approach. DATA SOURCES: Statistical prediction risk model publications. CONCLUSION: In statistical modeling and data science different approaches are needed if the goal is to predict rather than explain. The deployment of a poorly developed and tested predictive risk model has the potential to do great harm. Recommendations for best practice to develop predictive risk models have been developed but there appears to be little application within psychosocial and supportive oncology care. IMPLICATIONS FOR NURSING PRACTICE: Use of best practice evidence will ensure the development and validation of predictive models that are robust as these are currently lacking. These models have the potential to enhance supportive oncology care through harnessing routine digital collection of patient-reported outcomes and the targeting of interventions according to risk characteristics.
Asunto(s)
Modelos de Enfermería , Neoplasias/enfermería , Neoplasias/psicología , Enfermería Oncológica/métodos , Enfermería Basada en la Evidencia , Humanos , Oncología Médica/métodos , Apoyo SocialRESUMEN
INTRODUCTION: The potential for digital medicine and healthcare in geriatric oncology settings has received much attention. This scoping review will summarise the nature and extent of the existing literature that describes and examines digital health development, implementation, evaluation, outcome and experience for older adults with cancer, their families and their healthcare providers. METHODS AND ANALYSIS: Arksey and O'Malley's six stages of scoping review methodology framework will be used. Searches will be conducted in Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase via OvidSP, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus via EBSCO, Scopus and PsycINFO via OvidSP for published articles in peer-reviewed scientific journals from year 2000 onwards. In addition, we will screen databases for all prospectively registered trials. Research articles using quantitative or qualitative study design or reviews will be included if they describe or report the design, development or usability of digital health interventions in the treatment and care of patients 65 years of age or older with cancer and their families before, during and after cancer treatment. Grey literature will not be searched and included. Two investigators will independently perform the literature search, eligibility assessments and study selection. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram for the scoping reviews (PRISMA-ScR) will be used to delineate the search decision process. For included articles, the extracted results will be synthesised both quantitatively and qualitatively and reported under key conceptual categories of this scoping review. Research gaps and opportunities will be identified and summarised. ETHICS AND DISSEMINATION: Since this review will only include published data, ethics approval will not be sought. The results of the review will be published in peer-reviewed scientific journals. We will also engage with relevant stakeholders within research team's networks to determine suitable approaches for dissemination.
Asunto(s)
Neoplasias , Anciano , Atención a la Salud , Personal de Salud , Humanos , Neoplasias/terapia , Proyectos de Investigación , Literatura de Revisión como Asunto , Revisiones Sistemáticas como AsuntoRESUMEN
BACKGROUND: People with cancer experience a variety of symptoms as a result of their disease and the therapies involved in its management. Inadequate symptom management has implications for patient outcomes including functioning, psychological well-being, and quality of life (QoL). Attempts to reduce the incidence and severity of cancer symptoms have involved the development and testing of psycho-educational interventions to enhance patients' symptom self-management. With the trend for care to be provided nearer patients' homes, telephone-delivered psycho-educational interventions have evolved to provide support for the management of a range of cancer symptoms. Early indications suggest that these can reduce symptom severity and distress through enhanced symptom self-management. OBJECTIVES: To assess the effectiveness of telephone-delivered interventions for reducing symptoms associated with cancer and its treatment. To determine which symptoms are most responsive to telephone interventions. To determine whether certain configurations (e.g. with/without additional support such as face-to-face, printed or electronic resources) and duration/frequency of intervention calls mediate observed cancer symptom outcome effects. SEARCH METHODS: We searched the following databases: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 1); MEDLINE via OVID (1946 to January 2019); Embase via OVID (1980 to January 2019); (CINAHL) via Athens (1982 to January 2019); British Nursing Index (1984 to January 2019); and PsycINFO (1989 to January 2019). We searched conference proceedings to identify published abstracts, as well as SIGLE and trial registers for unpublished studies. We searched the reference lists of all included articles for additional relevant studies. Finally, we handsearched the following journals: Cancer, Journal of Clinical Oncology, Psycho-oncology, Cancer Practice, Cancer Nursing, Oncology Nursing Forum, Journal of Pain and Symptom Management, and Palliative Medicine. We restricted our search to publications published in English. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs that compared one or more telephone interventions with one other, or with other types of interventions (e.g. a face-to-face intervention) and/or usual care, with the stated aim of addressing any physical or psychological symptoms of cancer and its treatment, which recruited adults (over 18 years) with a clinical diagnosis of cancer, regardless of tumour type, stage of cancer, type of treatment, and time of recruitment (e.g. before, during, or after treatment). DATA COLLECTION AND ANALYSIS: We used Cochrane methods for trial selection, data extraction and analysis. When possible, anxiety, depressive symptoms, fatigue, emotional distress, pain, uncertainty, sexually-related and lung cancer symptoms as well as secondary outcomes are reported as standardised mean differences (SMDs) with 95% confidence intervals (CIs), and we presented a descriptive synthesis of study findings. We reported on findings according to symptoms addressed and intervention types (e.g. telephone only, telephone combined with other elements). As many studies included small samples, and because baseline scores for study outcomes often varied for intervention and control groups, we used change scores and associated standard deviations. The certainty of the evidence for each outcome was interpreted using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. MAIN RESULTS: Thirty-two studies were eligible for inclusion; most had moderate risk of bias,often related to blinding. Collectively, researchers recruited 6250 people and studied interventions in people with a variety of cancer types and across the disease trajectory, although many participants had breast cancer or early-stage cancer and/or were starting treatment. Studies measured symptoms of anxiety, depression, emotional distress, uncertainty, fatigue, and pain, as well as sexually-related symptoms and general symptom intensity and/or distress. Interventions were primarily delivered by nurses (n = 24), most of whom (n = 16) had a background in oncology, research, or psychiatry. Ten interventions were delivered solely by telephone; the rest combined telephone with additional elements (i.e. face-to-face consultations and digital/online/printed resources). The number of calls delivered ranged from 1 to 18; most interventions provided three or four calls. Twenty-one studies provided evidence on effectiveness of telephone-delivered interventions and the majority appeared to reduce symptoms of depression compared to control. Nine studies contributed quantitative change scores (CSs) and associated standard deviation results (or these could be calculated). Likewise, many telephone interventions appeared effective when compared to control in reducing anxiety (16 studies; 5 contributed quantitative CS results); fatigue (9 studies; 6 contributed to quantitative CS results); and emotional distress (7 studies; 5 contributed quantitative CS results). Due to significant clinical heterogeneity with regards to interventions introduced, study participants recruited, and outcomes measured, meta-analysis was not conducted. For other symptoms (uncertainty, pain, sexually-related symptoms, dyspnoea, and general symptom experience), evidence was limited; similarly meta-analysis was not possible, and results from individual studies were largely conflicting, making conclusions about their management through telephone-delivered interventions difficult to draw. Heterogeneity was considerable across all trials for all outcomes. Overall, the certainty of evidence was very low for all outcomes in the review. Outcomes were all downgraded due to concerns about overall risk of bias profiles being frequently unclear, uncertainty in effect estimates and due to some inconsistencies in results and general heterogeneity. Unsubstantiated evidence suggests that telephone interventions in some capacity may have a place in symptom management for adults with cancer. However, in the absence of reliable and homogeneous evidence, caution is needed in interpreting the narrative synthesis. Further, there were no clear patterns across studies regarding which forms of interventions (telephone alone versus augmented with other elements) are most effective. It is impossible to conclude with any certainty which forms of telephone intervention are most effective in managing the range of cancer-related symptoms that people with cancer experience. AUTHORS' CONCLUSIONS: Telephone interventions provide a convenient way of supporting self-management of cancer-related symptoms for adults with cancer. These interventions are becoming more important with the shift of care closer to patients' homes, the need for resource/cost containment, and the potential for voluntary sector providers to deliver healthcare interventions. Some evidence supports the use of telephone-delivered interventions for symptom management for adults with cancer; most evidence relates to four commonly experienced symptoms - depression, anxiety, emotional distress, and fatigue. Some telephone-delivered interventions were augmented by combining them with face-to-face meetings and provision of printed or digital materials. Review authors were unable to determine whether telephone alone or in combination with other elements provides optimal reduction in symptoms; it appears most likely that this will vary by symptom. It is noteworthy that, despite the potential for telephone interventions to deliver cost savings, none of the studies reviewed included any form of health economic evaluation. Further robust and adequately reported trials are needed across all cancer-related symptoms, as the certainty of evidence generated in studies within this review was very low, and reporting was of variable quality. Researchers must strive to reduce variability between studies in the future. Studies in this review are characterised by clinical and methodological diversity; the level of this diversity hindered comparison across studies. At the very least, efforts should be made to standardise outcome measures. Finally, studies were compromised by inclusion of small samples, inadequate concealment of group allocation, lack of observer blinding, and short length of follow-up. Consequently, conclusions related to symptoms most amenable to management by telephone-delivered interventions are tentative.
Asunto(s)
Neoplasias/complicaciones , Telemedicina/métodos , Teléfono , Adulto , Ansiedad/etiología , Ansiedad/terapia , Dolor en Cáncer/terapia , Depresión/etiología , Depresión/terapia , Disnea/etiología , Disnea/terapia , Fatiga/etiología , Fatiga/terapia , Femenino , Humanos , Masculino , Neoplasias/psicología , Neoplasias/terapia , Ensayos Clínicos Controlados Aleatorios como Asunto , Autocuidado , Disfunciones Sexuales Fisiológicas/etiología , Disfunciones Sexuales Fisiológicas/terapia , Estrés Psicológico/etiología , Estrés Psicológico/terapia , Evaluación de Síntomas , Teléfono/estadística & datos numéricos , Factores de Tiempo , IncertidumbreRESUMEN
PURPOSE: Primary care nurses can contribute to cancer early diagnosis. The objective of this systematic review was to identify, appraise and synthesise evidence on primary care nurses' contribution towards cancer early diagnosis in developed countries. METHOD: The following databases were searched in September 2017: MEDLINE, PsychINFO, CINAHL, SCOPUS, and EMBASE. Data were extracted on nurses': knowledge of cancer; frequency of 'cancer early diagnosis-related discussions' with patients; and perceived factors influencing these discussions. Studies were appraised using the Mixed Methods Appraisal Tool. RESULTS: Twenty-one studies were included from: United States, United Kingdom, Ireland, Spain, Turkey, Australia, Brazil and Middle East. Studies were mostly of low quality (one did not meet any appraisal criteria, 15 met one, four met two, and one met three). Nurses' knowledge of cancer, and their frequency of 'cancer early diagnosis-related discussions', varied across countries. This may be due to measurement bias or nurses' divergent roles across healthcare systems. Commonly perceived barriers to having screening discussions included: lack of time, insufficient knowledge and communication skills, and believing that patients react negatively to this topic being raised. CONCLUSIONS: Findings suggest a need for nurses to be adequately informed about, and have the confidence and skills to discuss, the topic of cancer early diagnosis. Further high-quality research is required to understand international variation in primary care nurses' contribution to this field, and to develop and evaluate optimal methods for preparing them for, and supporting them in, this.