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1.
EClinicalMedicine ; 73: 102695, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39050584

RESUMO

Background: Childhood Cancer Survivors (CCSs) are more likely to report sexual dysfunction than people without cancer history. Sexual functioning encompasses more than just sexual dysfunction. The scarcity of information regarding the status and influencing factors of sexual functioning in CCSs, hampers to devise suitable screening or interventions. This review aims to summarize research progress on sexual functioning and associated factors among CCSs. Methods: This review protocol is registered in PROSPERO(CRD42023427939) and performed according to PRISMA guidelines. From inception to November 15, 2023, a comprehensive search was conducted in PubMed, EMBASE, CINAHL, Web of Science, SCOPUS, PsycINFO, CNKI Database, Wanfang of Chinese Database, SinoMed Database and Cochrane Library on sexual functioning and childhood cancer survivors. Inclusion criteria were English or Chinese studies focusing on sexual functioning and related factors of cancer survivors, who diagnosed with cancer before 18 years old, and were adult and disease-free when participating in the study. Studies were excluded if the focus was on adult cancer patients or without age information. Findings: 395 records were retrieved, and 22 studies were finally included in this review. Results suggest that CCSs experience a substantial burden of sexual issues, including delayed psychosexual development, low satisfaction, and high prevalence of dysfunction. Underlying factors related to sexual functioning of CCSs were identified, including demographic, cancer treatment-related, psychological, and physiological factors. The historical change in research on sexual functioning was summarized. Interpretation: Research on sexual functioning among CCSs is limited. The extent to which cancer and related treatments affect sexual functioning remains largely unknown. The relationships between various factors and mechanisms underlying sexual functioning need to be confirmed by more rigorous studies to enable effective interventions to be developed. Funding: None.

2.
J Med Internet Res ; 26: e49089, 2024 Jul 31.
Artigo em Inglês | MEDLINE | ID: mdl-39083791

RESUMO

BACKGROUND: Electronic patient-reported outcomes (ePROs) are commonly used in oncology clinical practice and have shown benefits for patients and health resource use. OBJECTIVE: The aim of this study was to compare the isolated effect of administering ePROs to patients with cancer versus a control condition. METHODS: The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Randomized controlled trials evaluating ePRO interventions that aimed to improve health-related outcomes among patients with cancer were included. The primary outcome was health-related quality of life (HRQOL), and the secondary outcomes were symptoms, hospital admissions, unplanned visits, chemotherapy completion, survival, and satisfaction with care. The effect sizes of ePROs on health-related outcomes were analyzed as standardized mean differences (SMDs) with 95% CIs using a random effects model. RESULTS: The search identified 10,965 papers, of which 19 (0.17%) from 15 studies were included. The meta-analysis showed an improvement in HRQOL at 3 months, measured by the Functional Assessment of Cancer Therapy-General (SMD 0.28, 95% CI -1.22 to 1.78), and at 6 months, assessed using various HRQOL measures (SMD 0.07, 95% CI -1.24 to 1.39). The results should be interpreted with caution, given the wide 95% CIs. Of the 15 studies, 9 (60%) reported a positive signal on HRQOL, with two-thirds of the studies (n=6, 67%) including tailored patient advice and two-thirds (n=6, 67%) using clinician alert systems. CONCLUSIONS: The meta-analysis showed a potential improvement in HRQOL at 6 months and in Functional Assessment of Cancer Therapy-General scores at 3 months for studies that included tailored advice and clinician alerts, suggesting that these elements may improve ePRO effectiveness. The findings will provide guidance for future use and help health care professionals choose the most suitable ePRO features for their patients. TRIAL REGISTRATION: PROSPERO CRD42020175007; https://tinyurl.com/5cwmy3j6.


Assuntos
Neoplasias , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Neoplasias/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Semin Oncol Nurs ; : 151679, 2024 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-38890076

RESUMO

OBJECTIVES: Recommended treatment for advanced ovarian cancer involves a combination of debulking surgery and chemotherapy. Surgery places a significant burden on a patient's physical, social, sexual, and emotional wellbeing. Existing research exploring the impact of surgery is often limited to questionnaire administration with large gaps between data collection time points, missing key aspects of the perioperative period. Little is known of the experience of ovarian cancer surgical treatment from a patient perspective. This research aims to qualitatively explore advanced ovarian cancer patients' experience of surgery and identify areas in which quality of life may be impacted. METHODS: Semi-structured telephone or face-to-face interviews were conducted with patients who had undergone combined surgical and chemotherapy treatment. Interviews were audio-recorded and transcribed verbatim. Transcripts were analyzed using an inductive approach to thematic analysis. RESULTS: Twenty ovarian cancer patients who had undergone debulking surgery participated in interviews lasting between 33 and 68 minutes. Qualitative analysis generated five key themes: (1) care services; (2) experiences of a stoma; (3) preoperative experience; (4) impact of surgery; and (5) coping mechanisms. CONCLUSIONS: Understanding the patient experience of surgical treatment for advanced ovarian cancer can help inform and improve future care. This research explored the ways in which a patient's quality of life is impacted by surgery and highlights areas in which further support may be needed. Knowledge of the patient experience may also aid decision-making for both clinicians and patients when considering different treatment pathways. IMPLICATIONS FOR NURSING PRACTICE: Results highlighted two crucial points in the surgical pathway where patients' need for emotional support was significant: during pre-op and recovering from surgery as an inpatient. Nursing staff are key to providing reassurance during this time. Specialized stoma nurses were also essential for supporting patients to adapt to their stomas both physically and psychologically.

4.
Support Care Cancer ; 32(7): 430, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38874793

RESUMO

OBJECTIVES: This systematic review and meta-analysis aimed to assess the effectiveness of creative arts therapy (CAT) interventions on the health outcomes of adult patients with cancer. METHODS: A comprehensive search was conducted in six databases from their inception to June 10, 2023, with no restrictions on sex, age, cancer type, cancer stage, or treatment type. The Cochrane Risk of Bias (RoB2) tool for randomized controlled trials (RCTs) and the equivalent tool for non-RCTs (ROBINS-I) were used to assess the risk of bias. Meta-analyses were conducted to pool estimates of the effects of CAT on patients' health-related outcomes. A narrative synthesis of outcomes was performed where meta-analysis was not appropriate. RESULTS: A total of 25 studies (8 RCTs and 17 quasi-RCTs) involving 1489 cancer patients and survivors were included in the final data analysis. Most studies focused on patients with mixed cancer diagnoses who were undergoing active chemotherapy treatment. Most studies utilized painting, drawing, and/or sculpting as CAT interventions. The overall risk of bias in the included studies was moderate to high. Meta-analysis demonstrated a significant improvement in quality of life (SMD with 95% CI = 17.50, 10.05-24.95, P =.0000) and the social aspect of quality of life in cancer patients (SMD with 95% CI = 03.1 (0.06-0.55), P = .01), but no significant effects were found for depressive symptoms and coping strategies among patients who participated in CAT compared to control groups. Narrative analysis and non-RCTs suggested the potential of CAT in reducing levels of depression and anxiety, as well as improving self-image, hope, emotional expression/state, and processing in patients with cancer. However, inconsistent findings were reported regarding the effectiveness of CAT interventions on fatigue, spirituality, and psychosomatic distress/symptom intensity. CONCLUSION: The findings indicated significant and potential benefits of CAT for individuals with cancer, primarily related to quality of life. However, caution is needed in interpreting these findings due to limitations in the methodologies utilized in the included studies. Further large-scale RCTs are needed to examine the effectiveness of CAT on health outcomes, particularly in relation to self-image, hope, and emotional expression/state and processing among patients with cancer or those in palliative care.


Assuntos
Arteterapia , Neoplasias , Qualidade de Vida , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Arteterapia/métodos , Adulto , Ensaios Clínicos Controlados Aleatórios como Assunto
5.
J Geriatr Oncol ; 15(5): 101777, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38704912

RESUMO

INTRODUCTION: Checkpoint inhibitors (CPI) are widely used across different tumour types in older cancer patients. The ELDERS study investigated primarily the safety of CPI in older patients, and secondarily its impact on health-related quality of life (HRQoL), comparing older and younger patients. Here we describe the results from its secondary aim. MATERIALS AND METHODS: This was an observational, mixed methods study, consisting of questionnaires and qualitative interviews. Patients completed the EORTC QLQ-C30 at baseline and at three-monthly reviews (up to four over the planned 12 months on study). RESULTS: One hundred and forty patients, 70 in each age cohort (older: ≥70 years of age, younger: <70 years of age), were recruited. Twenty-four patients, 12 in each age cohort, were interviewed. The mean baseline EORTC QLQ-C30 score was 65/100 for both cohorts combined, and the score for the full QLQ-C30 assessment was 78/100 and 75/100 for older and younger, respectively. The physical functioning score was the only subscale to change significantly between baseline and the first and second reviews (p = 0.03 and 0.04, respectively), resulting from some improvement in the mean score (from baseline) within the younger cohort and some decline within the older cohort. However, when focusing on each cohort separately, the change over time was not statistically significant for either. Two main themes from the interviews were 'expectations' (thoughts about treatment before commencing) and 'experience' (lived experience during treatment). DISCUSSION: Quantitatively, there was no difference in the effect of CPIs on HRQoL between the cohorts, although qualitative data from interviews suggested that there were some experiential differences. People in the older cohort were less likely to seek additional information about CPIs and were more likely to report side effects. In terms of both 'expectations' and 'experience,' the older cohort was a heterogenous group, highlighting that an individualised approach is needed when supporting this group. This study shows that older patients can be reassured that immunotherapy is unlikely to negatively impact their HRQoL more than younger patients, and it should be considered a viable treatment option.


Assuntos
Inibidores de Checkpoint Imunológico , Neoplasias , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Idoso , Neoplasias/tratamento farmacológico , Masculino , Feminino , Inibidores de Checkpoint Imunológico/uso terapêutico , Inibidores de Checkpoint Imunológico/efeitos adversos , Estudos Prospectivos , Idoso de 80 Anos ou mais , Pessoa de Meia-Idade , Inquéritos e Questionários , Fatores Etários
6.
JCO Clin Cancer Inform ; 8: e2300162, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38574311

RESUMO

PURPOSE: Electronic patient-reported outcome measures (ePROMs) are digitalized health questionnaires used to gauge patients' subjective experience of health and disease. They are becoming prevalent in cancer care and have been linked to a host of benefits including improved survival. MyChristie-MyHealth is the ePROM established at the Christie NHS Foundation Trust in 2019. We conducted an evaluation of this service to understand user experiences, as well as strategies to improve its functioning. METHODS: Data collection: Patients who had opted never to complete MyChristie-MyHealth (n = 87), and those who had completed at least one (n = 87) were identified. Demographic data included age, sex, ethnicity, postcode, diagnosis, treatment intent, and trial status. Semistructured interviews were held with noncompleters (n = 30) and completers (n = 31) of MyChristie-MyHealth, as well as clinician users (n = 6), covering themes such as accessibility, acceptability and usefulness, and open discourse on ways in which the service could be improved. RESULTS: Noncompleters of MyChristie-MyHealth were older (median age 72 v 66 years, P = .005), receiving treatment with curative rather than palliative intent (odds ratio [OR], 1.45; P = .045), and less likely to be enrolled on a clinical trial (OR, 0.531; P = .011). They were less likely to own a smartphone (33% v 97%) or have reliable Internet access (45% v 100%). Satisfaction with MyChristie-MyHealth was high in both groups: 93% (n = 29) of completers and 87% (n = 26) noncompleters felt generally happy to complete. Completers of MyChristie-MyHealth wanted their results to be acknowledged by their clinicians. Clinicians wanted results to be displayed in a more user-friendly way. CONCLUSION: We have broadly characterized noncompleters of the Christie ePROM to identify those in need of extra support or encouragement in the clinic. An action plan resulting from this review has been compiled and will inform the future development of MyChristie-MyHealth.


Assuntos
Neoplasias , Medidas de Resultados Relatados pelo Paciente , Idoso , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Inquéritos e Questionários
8.
BMC Cancer ; 24(1): 500, 2024 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-38641809

RESUMO

BACKGROUND: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. METHODS: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. RESULTS: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. CONCLUSIONS: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.


Assuntos
Cuidadores , Neoplasias , Humanos , Cuidadores/psicologia , Reprodutibilidade dos Testes , Estudos Transversais , Inquéritos e Questionários , Neoplasias/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente
9.
Eur J Oncol Nurs ; 70: 102515, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38471325

RESUMO

PURPOSE: An estimated 57,000 women are currently living with secondary (metastatic) breast cancer across the UK. Equitable access to treatment has been associated with improved clinical outcomes, however geographical disparities have been reported which remain poorly understood. The purpose of our study was to explore women and clinicians' experience of geographic access to systemic anti-cancer therapies for the treatment of secondary breast cancer. METHOD: The study setting was the integrated cancer system across the northwest region of Greater Manchester UK. A pragmatic qualitative study design was used. Women aged >18 years with a confirmed SBC diagnosis and clinicians responsible for the care and treatment of women with a secondary breast cancer diagnosis were interviewed using semi structured interviews to elicit their experience and perspectives on geographic access to treatment. Data were analysed using thematic analysis to identify emergent themes. RESULTS: Eighteen interviews with women and 12 interviews with clinicians were completed. Four meta-themes were identified for geographic access, the influence of the health care system, person centred factors and the impact of Covid-19 on treatment access and receipt. CONCLUSION: Our study was the first of its kind to explore women and clinicians experience of geographic access to systemic anti-cancer therapies for the treatment of secondary breast cancer. Findings provided a greater understanding of distance decay and the influence of the health care system on treatment access. This included the importance and availability of clinical trials as a potential treatment option. This provided important insights and contributed to ongoing debate.


Assuntos
Neoplasias da Mama , Acessibilidade aos Serviços de Saúde , Pesquisa Qualitativa , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Pessoa de Meia-Idade , Idoso , Adulto , Reino Unido , COVID-19 , SARS-CoV-2 , Antineoplásicos/uso terapêutico
10.
Patient Educ Couns ; 123: 108235, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38492428

RESUMO

OBJECTIVE: To determine how decision making interventions for use in advanced cancer treatment consultations function and whether they increase perceptions of shared decision making (SDM) behaviours within consultations. METHODS: A systematic search of five literature databases was conducted. Evaluations of decision making interventions where participants faced active treatment decisions for stage 4 or otherwise incurable cancer were included. Intervention descriptions were coded using Behaviour Change Techniques (BCTs) to provide a narrative of how the interventions function. A narrative synthesis of interventions effect on perceptions of SDM behaviours compared to usual care was conducted. RESULTS: Four studies presenting different interventions were included. Education, training, modelling and enablement intervention functions were identified. Oncologist SDM training alone and combined with a patient communication aid demonstrated the only significant effect (p < 0.05) on SDM behaviours in advanced cancer consultations. CONCLUSION: Healthcare professional (HCP) SDM training which includes modelling and enablement functions may be effective in increasing clinician motivation, capability and opportunity to facilitate SDM in advanced cancer consultations. PRACTICE IMPLICATIONS: Implementing HCP SDM training into practice may encourage greater uptake of SDM which may lead to treatment decisions concordant with the goals of care of people with advanced cancer.

11.
Neurooncol Pract ; 11(2): 205-215, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38496913

RESUMO

Background: Adolescent and young adult (AYA) survivors of a central nervous system (CNS) tumor represent a vulnerable group who can experience: social isolation, low rates of employment, and achieving independence can be compromised, leading to poorer quality of life compared with survivors of other cancer types. The aim of this study is to develop and evaluate the validity of a needs assessment tool (NAT) for AYA survivors of a CNS tumor. Methods: Items generated using data from 29 qualitative studies and cognitive interviews (n = 8) produced NAT V1.1 (49 items). 128 of 316 eligible participants attending neuro-oncology clinics at 4 NHS sites between June 2022 and March 2023 completed the NAT V1.1 to allow for item reduction and refinement and to evaluate reliability and validity. A pilot study (n = 6) using YOU-CAN in routine follow-up concluded the study. Results: Hierarchical analysis and Rasch analysis identified 18- and 15-items for removal, respectively. YOU-CAN, comprised of the remaining 16 items, demonstrates excellent test-retest reliability (intra-class correlation coefficient, 0.901, n = 40) and sufficient correlation with the European Quality of Life questionnaire and Supportive Care Needs Survey (Pearson r = 0.433 and 0.590, respectively). Pilot testing showed YOU-CAN triggered discussions of unmet needs in consultations and highlighted the importance of multidisciplinary support. Conclusions: YOU-CAN is a valid and reliable instrument containing items related to concerns about physical and emotional health; family and relationships; self-acceptance; and independence. Future efforts should examine YOU-CAN's feasibility, and develop guidance for managing unmet needs. Routine use of YOU-CAN may improve the identification of otherwise undiscussed unmet needs and opportunities to deliver personalized support.

12.
Eur J Oncol Nurs ; 68: 102510, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38310664

RESUMO

PURPOSE: Artificial Intelligence is being applied in oncology to improve patient and service outcomes. Yet, there is a limited understanding of how these advanced computational techniques are employed in cancer nursing to inform clinical practice. This review aimed to identify and synthesise evidence on artificial intelligence in cancer nursing. METHODS: CINAHL, MEDLINE, PsycINFO, and PubMed were searched using key terms between January 2010 and December 2022. Titles, abstracts, and then full texts were screened against eligibility criteria, resulting in twenty studies being included. Critical appraisal was undertaken, and relevant data extracted and analysed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. RESULTS: Artificial intelligence was used in numerous areas including breast, colorectal, liver, and ovarian cancer care among others. Algorithms were trained and tested on primary and secondary datasets to build predictive models of health problems related to cancer. Studies reported this led to improvements in the accuracy of predicting health outcomes or identifying variables that improved outcome prediction. While nurses led most studies, few deployed an artificial intelligence based digital tool with cancer nurses in a real-world setting as studies largely focused on developing and validating predictive models. CONCLUSION: Electronic cancer nursing datasets should be established to enable artificial intelligence techniques to be tested and if effective implemented in digital prediction and other AI-based tools. Cancer nurses need more education on machine learning and natural language processing, so they can lead and contribute to artificial intelligence developments in oncology.

13.
Syst Rev ; 13(1): 35, 2024 01 18.
Artigo em Inglês | MEDLINE | ID: mdl-38238821

RESUMO

BACKGROUND: The review aimed to investigate geographic and sociodemographic factors associated with receipt of systemic anticancer therapies (SACT) for women with secondary (metastatic) breast cancer (SBC). METHODS: Included studies reported geographic and sociodemographic factors associated with receipt of treatment with SACT for women > 18 years with an SBC diagnosis. Information sources searched were Ovid CINAHL, Ovid MEDLINE, Ovid Embase and Ovid PsychINFO. Assessment of methodological quality was undertaken using the Joanna Briggs Institute method. Findings were synthesised using a narrative synthesis approach. RESULTS: Nineteen studies published between 2009 and 2023 were included in the review. Overall methodological quality was assessed as low to moderate. Outcomes were reported for treatment receipt and time to treatment. Overall treatment receipt ranged from 4% for immunotherapy treatment in one study to 83% for systemic anticancer therapies (unspecified). Time to treatment ranged from median 54 days to 95 days with 81% of patients who received treatment < 60 days. Younger women, women of White origin, and those women with a higher socioeconomic status had an increased likelihood of timely treatment receipt. Treatment receipt varied by geographical region, and place of care was associated with variation in timely receipt of treatment with women treated at teaching, research and private institutions being more likely to receive treatment in a timely manner. CONCLUSIONS: Treatment receipt varied depending upon type of SACT. A number of factors were associated with treatment receipt. Barriers included older age, non-White race, lower socioeconomic status, significant comorbidities, hospital setting and geographical location. Findings should however be interpreted with caution given the limitations in overall methodological quality of included studies and significant heterogeneity in measures of exposure and outcome. Generalisability was limited due to included study populations. Findings have practical implications for the development and piloting of targeted interventions to address specific barriers in a socioculturally sensitive manner. Addressing geographical variation and place of care may require intervention at a commissioning policy level. Further qualitative research is required to understand the experience and of women and clinicians. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020196490.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Comorbidade
14.
BMJ Support Palliat Care ; 14(1): 103-117, 2024 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-37696586

RESUMO

OBJECTIVES: A prospective cohort study to evaluate clinical effectiveness of the enhanced supportive care (ESC) service at a comprehensive cancer centre and to explore the impact of the service on patient and caregiver outcomes and experience. METHODS: Patients who received care under the ESC service and their caregivers were eligible. Consented patients (n=184) and caregivers (n=67) completed questionnaires at baseline, 4 weeks and 8 weeks post-ESC. Patient questionnaires assessed quality of life (QOL), symptoms, experience of ESC and health service use. Caregiver questionnaires included QOL and needs assessment. Selected patients (n=13) participated in qualitative interviews. Quantitative analysis explored differences in questionnaire responses over time (p<0.05). Qualitative data were analysed thematically. RESULTS: Patient quantitative data showed improvements in QOL (p=0.004 for European Quality of Life Questionnaire 5 dimensions (EQ5D) health index scores) and anxiety (p=0.006) at 4 weeks, reduction in some symptoms (pain p=0.02 at 4 weeks), improvement in self-efficacy, an increase in problems being addressed and a decrease in health service use (reduction in outpatient appointments). Qualitative findings suggested patients were generally satisfied with the ESC service but identified areas for improvement such as increased awareness of ESC and earlier referral. Fewer improvements were noted for caregivers; however, they did report a decrease in unmet needs. CONCLUSION: The ESC service had a positive impact on various patient-reported and caregiver-reported outcomes. There were also positive impacts on health service use. Increasing awareness of ESC and engaging patients at an earlier stage in the disease trajectory may further improve patient satisfaction and outcomes.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Cuidadores , Estudos Prospectivos , Neoplasias/terapia , Inquéritos e Questionários
15.
J Adolesc Young Adult Oncol ; 13(1): 40-54, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37307017

RESUMO

Purpose: To identify and evaluate patient-reported outcome measures (PROMs) for assessing survivorship-related concepts for adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors. Methods: We searched five electronic databases. Two researchers independently screened all titles for inclusion and used consensus-based standards for the selection of health measurement instruments (COSMIN) guidance to grade the quality of evidence for each measurement property. Results: Four studies met eligibility criteria: single-item pain thermometer; single-item fatigue thermometer; 37-item pediatric functional assessment of cancer therapy-brain tumor survivors, measuring quality of life; and 12-item Perceived Barriers Scale to assess barriers to employment. The Perceived Barrier Scale showed high-quality evidence for internal consistency and moderate quality evidence for construct and structural validity. Evidence for the measurement properties of the other PROMs was low-to-moderate quality. Conclusion: We found one PROM with sufficient evidence for good measurement properties to support its use. This warrants development and evaluation of further PROMs to inform ongoing supportive care for this population. Implications for Cancer Survivors: The Perceived Barriers Scale is sufficiently validated and could be considered to guide support for AYA survivors of CNS tumors to achieve their employment goals.


Assuntos
Sobreviventes de Câncer , Neoplasias do Sistema Nervoso Central , Adolescente , Humanos , Adulto Jovem , Neoplasias do Sistema Nervoso Central/terapia , Emprego , Medidas de Resultados Relatados pelo Paciente , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários
16.
Cancer Nurs ; 2023 Dec 08.
Artigo em Inglês | MEDLINE | ID: mdl-38079571

RESUMO

BACKGROUND: Brain tumors account for 15% of all adolescent and young adult cancers, and survivors are at risk of ongoing late effects that can severely impact their ability to reach independence. Despite follow-up initiatives advocating a personalized approach, survivors continue to experience ongoing sequelae. A better understanding of the survivorship experience is required to ensure services are able to deliver personalized support. OBJECTIVE: The aim of this systematic search and meta-ethnography was to identify and synthesize qualitative studies to better understand the experiences, perspectives, and needs of adolescent and young adult brain tumor survivors. METHODS: Five databases were searched using predefined criteria, studies were independently screened by two researchers, and those meeting inclusion criteria were synthesized. RESULTS: Twenty-seven studies were synthesized, generating 2 main themes, each with subthemes: (1) individual factors impacting resilience, namely, positive coping styles, managing emotions, and family functioning, and (2) cancer-related factors that challenge the individual, namely, living with societal expectations and barriers to coping. CONCLUSION: The conceptual framework illustrates the challenges and resilience of survivors along the continuum from adolescence to adulthood, reflecting the needs of this age group in 1 model, despite it being a time of rapid growth. The lack of awareness of potential physical and emotional late effects challenges individual resilience, which is further challenged when significant milestones cannot be reached. IMPLICATIONS FOR PRACTICE: There is a role for follow-up services to identify and address unmet needs, provide better information to equip survivors to manage late effects, and support families, particularly those who underwent more intensive treatment.

17.
Syst Rev ; 12(1): 183, 2023 09 30.
Artigo em Inglês | MEDLINE | ID: mdl-37777816

RESUMO

INTRODUCTION: Adoptive cell therapy (ACT) is a rapidly evolving field. Patient-reported outcomes (PROs) allow patients to report the impact of treatment on their quality of life during and after treatment. The systematic review aims to characterise the breadth of PROs utilised in ACT cancer care and provide guidance for the use of PROs in this patient population in the future. METHODS: A systematic search was conducted (MEDLINE, PsycINFO, Embase and CINAHL) in August 2021 by two reviewers. Search terms covered the following: "adoptive cell therapy", "patient-reported outcomes" and "cancer". Studies were included if they used a PRO measure to report the impact of ACT. The methodological quality of PROs was assessed. Forward and backward reference searching was conducted of any relevant papers. A quality grading scale was applied based on Cochrane and Revenson criteria for classification of high-quality studies. Key data from the studies and the included PROs was extracted by two researchers and tabulated. RESULTS: One-hundred nine papers were identified; 11 papers were included. The majority of studies were single-arm trials or observational studies. Twenty-two different PROs were identified; none was ACT specific. The PROMIS-29 and EQ-5D were most commonly used. Few studies collected PRO data in the first 1-2 weeks. Four studies followed patients up for over a year, and a further four studies followed patients for approximately 3 months. DISCUSSION: None of the PROs identified have been designed specifically for ACT. Appropriateness of existing instruments should be considered. It should be considered whether it is appropriate to collect data more frequently in the acute stage and then less frequently during follow-up. It should be considered if one tool is suitable at all time points or if the tool should be adapted depending on time since treatment. More research is needed to identify the exact timings of PRO assessments, and qualitative work with patients is needed to determine the most important issues for them throughout the treatment and follow-up.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Imunoterapia Adotiva , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente
18.
Cancer Nurs ; 2023 Aug 07.
Artigo em Inglês | MEDLINE | ID: mdl-37552219

RESUMO

BACKGROUND: Research led by nurses has evolved rapidly over the last 2 decades globally. Assessing the work that has been conducted so far can help the specialty to strategically shape future directions of nurse-led cancer research. OBJECTIVE: The aim of this study was to provide a comprehensive, up-to-date synthesis of all nurse-led cancer research published articles over 20 years. METHODS: A bibliometric analysis was used. Three databases were used to retrieve nurse-led cancer research publications for the period from January 1, 2004, to March 11, 2022. RESULTS: A total of 7043 original articles were retrieved. A significant increase in nurse-led cancer research over the past 2 decades was evident. The United States and United Kingdom were the most productive countries in terms of the number of published articles. Minimal international collaboration was observed among low- or middle-income countries versus high-income countries. Breast cancer, palliative care, and quality of life received the most attention in nurse-led cancer research, followed by education, pain, and communication. Very few publications addressed cancer prevention, breaking bad news, and cancer rehabilitation. CONCLUSION: Areas to consider in the future include more international collaborations on commonly agreed research agendas, capacity building to allow more research beyond the few countries that dominate the publications, and more focus on low- or middle-income countries. IMPLICATIONS FOR PRACTICE: The findings of this study provide direction for future research led by cancer nurses and the areas that warrant further investigation.

19.
ERJ Open Res ; 9(3)2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37143833

RESUMO

Introduction: Interstitial lung abnormalities (ILAs) are common incidental findings in lung cancer screening; however, their clinical evolution and longer-term outcomes are less clear. The aim of this cohort study was to report 5-year outcomes of individuals with ILAs identified through a lung cancer screening programme. In addition, we compared patient-reported outcome measures (PROMs) in patients with screen-detected ILAs to newly diagnosed interstitial lung disease (ILD) to assess symptoms and health-related quality of life (HRQoL). Methods: Individuals with screen-detected ILAs were identified, and 5-year outcomes, including ILD diagnoses, progression-free survival and mortality, were recorded. Risk factors associated with ILD diagnosis were assessed using logistic regression and survival using Cox proportional hazard analysis. PROMs were compared between a subset of patients with ILAs and a group of ILD patients. Results: 1384 individuals underwent baseline low-dose computed tomography screening, with 54 (3.9%) identified as having ILAs. 22 (40.7%) were subsequently diagnosed with ILD. 14 (25.9%) individuals died, and 28 (53.8%) suffered disease progression within 5 years. Fibrotic ILA was an independent risk factor for ILD diagnosis, mortality and reduced progression-free survival. Patients with ILAs had lower symptom burden and better HRQoL in comparison to the ILD group. Breathlessness visual analogue scale (VAS) score was associated with mortality on multivariate analysis. Conclusions: Fibrotic ILA was a significant risk factor for adverse outcomes including subsequent ILD diagnosis. While screen-detected ILA patients were less symptomatic, breathlessness VAS score was associated with adverse outcomes. These results could inform risk stratification in ILA.

20.
Eur J Oncol Nurs ; 64: 102325, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37146348

RESUMO

PURPOSE: Concurrent chemotherapy and radiotherapy treatment (CCRT) is used to treat locally advanced Non-Small Cell Lung Cancer (NSCLC) in patients with suitable fitness. CCRT is associated with significant toxicity and time spent receiving treatment. Our aim was to identify the support and information needs of patients, and where possible their informal caregivers (IC), at key points along the CCRT pathway. METHODS: Participants were NSCLC patients who were either about to undergo, currently receiving or had finished CCRT. Semi-structured interviews were conducted with participants, and their IC where applicable, at the treatment centre or participants' home. Interviews were audio recorded and transcribed prior to undergoing thematic analysis. RESULTS: Fifteen patients were interviewed; five were interviewed with their IC. Themes of physical, psychological, and practical support needs are identified with associated subthemes exploring specific needs, such as dealing with late treatment effects, and how patients seek support. Information needs prior to, during and following CCRT were also established as predominant themes with subthemes detailing the needs at these time points. Examples include differences in participant desire for toxicity information and life after treatment. CONCLUSIONS: The need for disease, treatment and symptom related information and support remains consistent throughout CCRT and beyond. Further information and support for other matters including engaging in regular activities may also be desired. Time allocated within consultations to establish changes in needs or desire for further information may benefit patient and IC experience and QOL.


Assuntos
Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Humanos , Carcinoma Pulmonar de Células não Pequenas/tratamento farmacológico , Neoplasias Pulmonares/terapia , Qualidade de Vida , Quimiorradioterapia/efeitos adversos
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