Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 162
Filtrar
Mais filtros

Bases de dados
Tipo de documento
Intervalo de ano de publicação
1.
Palliat Support Care ; 22(2): 296-305, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37311662

RESUMO

BACKGROUND: Survivors of childhood neuroblastoma are at risk of multiple treatment-related health problems (late effects), impacting their quality of life. While late effects and quality of life among Australia and New Zealand (ANZ) childhood cancer survivors have been reported, the outcomes of neuroblastoma survivors specifically have not been reported, limiting critical information to inform treatment and care. METHODS: Young neuroblastoma survivors or their parents (as proxy for survivors <16 years) were invited to complete a survey and optional telephone interview. Survivors' late effects, risk perceptions, health-care use, and health-related quality of life were surveyed and analyzed using descriptive statistics and linear regression analyses. In-depth interviews explored participants' experiences, knowledge, and perception of late effects and information needs. Thematic content analysis was used to summarize the data. RESULTS: Thirty-nine neuroblastoma survivors or parents completed questionnaires (median age = 16 years, 39% male), with 13 also completing interviews. Thirty-two participants (82%) reported experiencing at least 1 late effect, most commonly dental problems (56%), vision/hearing problems (47%), and fatigue (44%). Participants reported high overall quality of life (index = 0.9, range = 0.2-1.0); however, more participants experienced anxiety/depression compared to the population norm (50% met criteria versus 25%, χ2 = 13, p < 0.001). Approximately half of participants (53%) believed they were at risk of developing further late effects. Qualitatively, participants reported knowledge gaps in understanding their risk of developing late effects. CONCLUSION: Many neuroblastoma survivors appear to experience late effects, anxiety/depression and have unmet cancer-related information needs. This study highlights important areas for intervention to reduce the impact of neuroblastoma and its treatment in childhood and young adulthood.


Assuntos
Sobreviventes de Câncer , Neoplasias , Neuroblastoma , Humanos , Masculino , Adulto Jovem , Adulto , Adolescente , Feminino , Autorrelato , Qualidade de Vida , Neuroblastoma/complicações , Sobreviventes , Neoplasias/terapia
2.
Cancer ; 129(23): 3820-3832, 2023 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-37566341

RESUMO

BACKGROUND: The impact of survivorship care plans (SCPs) on the proximal and distal outcomes of adult and childhood cancer survivors, and parent proxies, is unclear. This study aimed to determine the relationship between SCP receipt and these outcomes. METHODS: A cross-sectional survey of adult and childhood cancer survivors (and parent proxies for survivors aged younger than 16 years) across Australia and New Zealand was conducted. Multivariate regression models were fitted to measure the impact of SCP receipt on proximal (unmet information needs and propensity to engage with, and attend, cancer-related follow-up care) and distal outcomes (quality of life and satisfaction with cancer-related follow-up care) with control for cancer history and sociodemographic factors. RESULTS: Of 1123 respondents, 499 were adult cancer survivors and 624 were childhood cancer survivors (including 222 parent proxies). We found that SCP receipt was predictive of greater attendance at, and awareness of, cancer-related follow-up care (adult: odds ratio [OR], 2.46; 95% CI, 1.18-5.12; OR, 2.38; 95% CI, 1.07-5.29; child/parent: OR, 2.61; 95% CI, 1.63-4.17; OR, 1.63; 95% CI, 1.06-2.50; respectively). SCP receipt also predicted fewer unmet information needs related to "follow-up care required" and "possible late effects" (adult: OR, 0.44; 95% CI, 0.20-0.96; OR, 0.29; 95% CI, 0.13-0.64; child/parent: OR, 0.46; 95% CI, 0.30-0.72; OR, 0.57; 95% CI, 0.38-0.85; respectively). In terms of distal outcomes, SCP receipt predicted a better global quality of life for adult cancer survivors (ß, 0.08; 95% CI, -0.01-7.93), proxy-reported health-related quality of life (ß, 0.15; 95% CI, 0.44-7.12), and satisfaction with follow-up care for childhood cancer survivors (OR, 2.93; 95% CI, 1.64-5.23). CONCLUSIONS: Previous studies have shown little impact of SCPs on distal end points. Results suggest that SCPs may be beneficial to cancer survivors' proximal and distal outcomes.


Assuntos
Assistência ao Convalescente , Neoplasias , Adulto , Criança , Humanos , Idoso , Sobrevivência , Qualidade de Vida , Estudos Transversais , Neoplasias/terapia , Satisfação Pessoal , Planejamento de Assistência ao Paciente
3.
Lancet ; 399(10334): 1561-1572, 2022 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-35430023

RESUMO

Worldwide advances in treatment and supportive care for children and adolescents with cancer have resulted in a increasing population of survivors growing into adulthood. Yet, this population is at very high risk of late occurring health problems, including significant morbidity and early mortality. Unique barriers to high-quality care for this group include knowledge gaps among both providers and survivors as well as fragmented health-care delivery during the transition from paediatric to adult care settings. Survivors of childhood and adolescent cancer are at risk for a range of late-occuring side-effects from treatment, including cardiac, endocrine, pulmonary, fertility, renal, psychological, cognitive, and socio-developmental impairments. Care coordination and transition to adult care are substantial challenges, but can be empowering for survivors and improve outcomes, and could be facilitated by clear, effective communication and support for self-management. Resources for adult clinical care teams and primary care providers include late-effects surveillance guidelines and web-based support services.


Assuntos
Neoplasias , Transição para Assistência do Adulto , Adolescente , Adulto , Criança , Atenção à Saúde , Humanos , Assistência de Longa Duração , Neoplasias/terapia , Sobreviventes
4.
Oncologist ; 28(5): e276-e286, 2023 05 08.
Artigo em Inglês | MEDLINE | ID: mdl-36944156

RESUMO

BACKGROUND: Childhood cancer survivors are vulnerable to long-term treatment-related health conditions, which can lead to poor quality of life. Little data exist on the overall health of long-term Australian and New Zealand childhood cancer survivors or on survivors' motivations for attending survivorship clinics. METHODS: This study administers a cross-sectional questionnaire to long-term survivors ≥5 years from their primary diagnosis. We compared participant-reported number of late effects by a cancer diagnosis, and identified clinical (eg, treatment) and demographic (eg, age) factors that were associated with late effects burden and engagement in cancer survivorship care. RESULTS: A total of 634 participants completed questionnaires (48% male, mean age = 21.7 years). Most participants (79%) reported at least one cancer-related late effect, most commonly fatigue (40%) and memory/learning difficulties (34%). Brain tumor survivors reported a higher total number of late effects than survivors with other diagnoses (mean = 5.7 vs. 3.2, P < .001). Participants' most commonly reported motivators for engaging in care were to understand problems that may occur later in life because of their cancer and/or treatment (98.5%) and to get reassurance about one's health (97.4%). The proportion of survivors endorsing each motivating factor was similar across cancer diagnoses, with the exception of learning more about insurance and pensions (highest in brain tumor survivors = 80%). In multivariable analyses, survivors were more likely to report being engaged in survivorship care if they were younger (P < .001), less time had elapsed since their diagnosis (P < .001), or they reported a higher number of motivating factors (P = .016). CONCLUSION: Survivors report a range of health problems decades after treatment completion. Understanding the burden of late effects, and motivators for seeking survivorship care to manage these health problems, is important for ensuring that tailored interventions or services are available to meet the needs of this growing population and to design effective models of survivorship care.


Assuntos
Neoplasias Encefálicas , Sobreviventes de Câncer , Neoplasias , Humanos , Masculino , Criança , Adulto Jovem , Adulto , Feminino , Sobrevivência , Qualidade de Vida , Motivação , Estudos Transversais , Neoplasias/epidemiologia , Neoplasias/terapia , Austrália/epidemiologia , Progressão da Doença
5.
Pediatr Blood Cancer ; 69(12): e30015, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36200485

RESUMO

BACKGROUND: Childhood cancer is highly distressing for families and can place strain on parents' relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative study investigated the perceived impact of childhood cancer on parents' relationship with their partner, with a focus on emotional and sexual intimacy. METHODS: We conducted semi-structured interviews with 48 parents (42 mothers, six fathers) of children under the age of 18 who had completed curative cancer treatment. We analysed the interviews using thematic analysis. RESULTS: At interview, parents were on average 40.7 years old (SD = 5.5, range: 29-55 years), and had a child who had completed cancer treatment between 3 months and 10.8 years previously (M = 22.1 months). All participants were living with their partner in a married/de facto relationship. Most parents reported that their child's cancer treatment had a negative impact on emotional and sexual intimacy with their partner, with some impacts extending to the post-treatment period. Reasons for compromised intimacy included exhaustion and physical constraints, having a shifted focus, and discord arising from different coping styles. Some parents reported that their relationship strengthened. Parents also discussed the impact of additional stressors unrelated to the child's cancer experience. CONCLUSIONS: Parents reported that childhood cancer had a negative impact on aspects of emotional and sexual intimacy, although relationship strengthening was also evident. It is important to identify and offer support to couples who experience ongoing relationship stress, which may have adverse effects on family functioning and psychological wellbeing into survivorship.


Assuntos
Neoplasias , Navios , Feminino , Criança , Humanos , Adulto , Neoplasias/terapia , Neoplasias/psicologia , Pais/psicologia , Adaptação Psicológica , Mães
6.
Support Care Cancer ; 30(11): 8947-8957, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35909162

RESUMO

PURPOSE: Parents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child's physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors. METHODS: We conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment. RESULTS: Parents and survivors self-reported median (range) of 127.5 (0-1260) and 220 (0-1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage. CONCLUSIONS: Physical activity levels varied widely among survivors, reflecting factors including parents' lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors' insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit.


Assuntos
Neoplasias , Adolescente , Criança , Humanos , Estudos Transversais , Neoplasias/terapia , Pais/psicologia , Exercício Físico/psicologia , Comportamento Sedentário
7.
Palliat Support Care ; : 1-10, 2022 Sep 27.
Artigo em Inglês | MEDLINE | ID: mdl-36164937

RESUMO

OBJECTIVES: Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors' engagement with survivorship care. METHODS: We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12. RESULTS: We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care. SIGNIFICANCE OF RESULTS: Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors' anxieties about their future health.

8.
Int J Cancer ; 148(4): 971-980, 2021 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-32748404

RESUMO

Maximizing participation in cancer research is important to improve the validity and generalizability of research findings. We conducted a four-arm randomized controlled trial to test the impact of a novel video invitation on participant response. We invited childhood cancer survivors and parents of survivors <16 years to complete questionnaires. We compared response rates to an invitation letter (control) vs receiving the letter plus a video invitation on a flash drive presented by a childhood cancer survivor, a pediatric oncologist or a researcher. We explored factors associated with viewing the video and examined the impact of enclosing the USB on study costs. Overall 54% (634/1176) of questionnaires were returned. Participants who received a video invitation on a USB were more likely to return the questionnaire than those who did not (58% vs 47%, P < .001). Participation rate did not significantly differ by video presenter. Forty-seven percent of participants who received a USB reported watching the video, of whom 48% reported that the video influenced their decision to participate. Participants with a lower income (OR = 0.43, 95% CI = 0.25-0.74, P = .002) were more likely to report watching the video. Participants who received a video invitation required significantly fewer reminder calls than those who only received a written invitation (mean = 1.6 vs 1.1 calls, P < .001), resulting in a 25% recruitment cost-saving for the study. Adding a USB with a video study invitation to recruitment packages is a cost-effective way of improving study participation. This is important in an era of declining study participation and underrepresentation of vulnerable populations in research.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/terapia , Participação do Paciente/estatística & dados numéricos , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , Adolescente , Adulto , Austrália , Pesquisa Biomédica/economia , Pesquisa Biomédica/métodos , Criança , Análise Custo-Benefício , Feminino , Humanos , Masculino , Programas de Rastreamento/economia , Programas de Rastreamento/métodos , Neoplasias/diagnóstico , Nova Zelândia , Gravação em Vídeo/economia , Gravação em Vídeo/métodos , Adulto Jovem
9.
Psychooncology ; 2021 Jan 05.
Artigo em Inglês | MEDLINE | ID: mdl-33403751

RESUMO

OBJECTIVES: The Psychosocial Standards of Care (PSSC) in paediatric oncology prescribe the minimum standards for education support. It is unknown, however, if published education support programmes for children with cancer meet the PSSC standards for education support. Successful implementation of standards for education support is challenging but may be achieved with guidance. We aimed to (1) review education support programmes for childhood cancer patients and survivors against the PSSC standards and (2) provide practical recommendations for future research and implementation of education support programmes. METHODS: We searched PsycINFO, PubMed, CINAHL, EMBASE, and Educational Resources Information and Center databases. We reviewed the education support programmes using five evaluation criteria derived from the PSSC and summarised the structure of identified programmes. We examined the features and limitations of programmes that met all evaluation criteria. RESULTS: We identified 20 education support programmes in paediatric oncology, including peer programmes (n = 3), teacher programmes (n = 5), and school re-entry programmes (SRPs n = 12). We found that three SRPs met all evaluation criteria and that SRP components were timed according to the child's position on the cancer trajectory (e.g., diagnosis and treatment, school re-entry, and follow up throughout schooling). The supporting evidence of the programmes, however, is unclear due to the lack of adequately designed studies. CONCLUSIONS: SRPs provide a promising structure for future education support programmes. We recommend strategies for developing and evaluating education support that adheres to the PSSC and adapts to international and local contexts.

10.
Pediatr Blood Cancer ; 68(9): e29134, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34133073

RESUMO

BACKGROUND: Childhood cancer survivors do not engage in sufficient physical activity and have low fitness levels. Perceived physical activity and fitness levels may influence survivors' engagement in health behaviours. We aimed to investigate survivors' perceptions of physical activity and fitness levels and identify how accurate their perceptions were. We further explored survivors' attitudes toward physical activity, including perceived importance and desire to increase activity levels. PROCEDURE: We recruited 116 childhood cancer survivors (8-18 years) and assessed their perceived physical activity levels using a questionnaire and the Godin's Leisure Score Index. Accuracy of their perceptions was established by comparing their perceived physical activity levels with the recommended guidelines. Survivors reported their perceived fitness levels using the International Fitness Scale. We compared survivors' perceptions with their performance on the 6-minute walk test using weighted Cohen's kappa to determine interrater agreement between perceived and objectively measured fitness. RESULTS: Most survivors did not meet the physical activity guidelines (<420 min/week). One-third incorrectly perceived whether their self-reported physical activity levels were appropriate (84% underestimated, while 16% overestimated). Survivors had average fitness and were inaccurate at perceiving their fitness level. Survivors highly valued the importance of being able to do physical activity, and 89% reported a desire to increase their physical activity. CONCLUSIONS: Our results reveal that many survivors are not accurate when perceiving their physical activity and fitness levels. Emphasising the need for objective fitness assessments, and patient education in clinical practice may support survivors to accurately perceive their physical activity and fitness levels, thus improving health behaviours.


Assuntos
Sobreviventes de Câncer , Exercício Físico , Neoplasias , Aptidão Física , Adolescente , Criança , Humanos , Inquéritos e Questionários
11.
Pediatr Blood Cancer ; 68(5): e28835, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33314726

RESUMO

BACKGROUND: People who receive treatment for cancer during childhood often experience subsequent complications of therapy, known as late effects, which can lead to an increased risk of death. PROCEDURE: Using deidentified population-based data from the Australian Childhood Cancer Registry for children aged 0-14 diagnosed with cancer during the period 1983-2011 and who survived for a minimum of 5 years, we examined disease-related deaths (other than cancer recurrence or second primary cancers) that occurred up to 31 December 2016. Risk of death relative to the general population was approximated using standardised mortality ratios (SMRs). Treatment received was stratified according to the intensity of treatment rating, version 3 (ITR-3). RESULTS: During the study period, 82 noncancer disease-related deaths were recorded among 13 432 childhood cancer survivors, four times higher than expected (SMR = 4.43, 95% CI = 3.57-5.50). A clear link to treatment intensity was observed, with the relative risk of noncancer disease-related mortality being twice as high for children who underwent 'most intensive' treatment (SMR = 5.94, 95% CI = 3.69-9.55) compared to the 'least intensive' treatment group (SMR = 2.98, 95% CI = 1.42-6.24; Ptrend  = .01). Thirty-year cumulative mortality from noncancer disease-related deaths was estimated at 1.4% (95% CI = 1.1-1.9) after adjusting for competing causes of death such as cancer, accidents, or injuries. CONCLUSIONS: Although childhood cancer survivors are at increased relative risk of death from noncancer diseases, particularly those who undergo more intensive treatment, the cumulative mortality within 30 years of diagnosis remains small. Knowledge of late effects can guide surveillance of survivors and treatment modification, without wanting to compromise the high rates of survival.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Adolescente , Adulto , Austrália , Causas de Morte , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino
12.
Pediatr Blood Cancer ; 68(12): e29398, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34606168

RESUMO

PURPOSE: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. METHODS: We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. RESULTS: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. CONCLUSIONS: Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.


Assuntos
Sobreviventes de Câncer , Neoplasias , Criança , Humanos , Neoplasias/terapia , Pais , Qualidade de Vida , Inquéritos e Questionários , Sobreviventes
13.
Acta Oncol ; 60(10): 1325-1334, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34308777

RESUMO

BACKGROUND: Parents of childhood cancer survivors may be vulnerable to experiencing poor health outcomes, but little is known about how these parents use healthcare. This study investigated the nature and extent of survivors' parents' healthcare and medication use relative to a comparison group. We also examined whether demographic or cancer-related factors were related to healthcare use and whether healthcare use was associated with parents' general functioning. METHODS: We conducted a cross-sectional study involving 55 parents of cancer survivors recruited through eight Australian hospitals, and 135 parents of children without a cancer diagnosis, through an online recruitment platform. Participants responded to a questionnaire assessing their health service usage, regular medications, general functioning (engagement activities including work/study) and anxiety and depression symptoms (using PROMIS short forms). We performed regression analysis to determine factors related to healthcare and medication use in parents of survivors. RESULTS: More parents of survivors reported accessing mental health services than comparison parents (56% vs. 33%, p=.003), mainly due to their use of social workers. Fewer parents of survivors reported accessing other community health services, particularly general practitioners (51% vs. 78%, p<.001). Having a child survivor who was male was associated with greater use of community health services (B= -0.67, p=.008). No other demographic or cancer-related variables were associated with health service use. Health service use was not associated with general functioning, but greater medication use was associated with higher anxiety scores (B = 1.41, p=.008). CONCLUSION: Parents of childhood cancer survivors showed different patterns of health service use relative to comparison parents, but the extent of their use was not significantly linked with demographic or cancer-related variables. Comprehensive assessment of parents' needs in clinical encounters remains vital to identify and appropriately match support needs with available services.


Assuntos
Sobreviventes de Câncer , Neoplasias , Austrália/epidemiologia , Criança , Estudos Transversais , Serviços de Saúde , Humanos , Masculino , Neoplasias/epidemiologia , Pais
14.
Int J Cancer ; 147(3): 847-855, 2020 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-31800093

RESUMO

Cardiovascular disease is up to 10 times more likely among childhood cancer survivors compared to siblings. Low cardiorespiratory fitness is a modifiable risk-factor for cardiovascular diseases. Yet, cardiorespiratory fitness is not routinely screened in pediatric oncology, and healthy VO2max cut-points are unavailable. We aimed to predict cardiorespiratory fitness by developing a simple algorithm and establish cut-points identifying survivors' cardiovascular fitness health-risk zones. We recruited 262 childhood cancer survivors (8-18 years old, ≥1-year posttreatment). Participants completed gold-standard cardiorespiratory fitness assessment (Cardiopulmonary Exercise Test [CPET; VO2max ]) and 6-minute walk test (6MWT). Associations with VO2max were included in a linear regression algorithm to predict VO2max , which was then cross-validated. We used Bland-Altman's limits of agreement and Receiver Operating Characteristic curves using FITNESSGRAM's "Healthy Fitness Zones" to identify cut-points for adequate cardiorespiratory fitness. A total of 199 participants (aged 13.7 ± 2.7 years, 8.5 ± 3.5 years posttreatment) were included. We found a strong positive correlation between VO2max and 6MWT distance (r = 0.61, r2 = 0.37, p < 0.001). Our regression algorithm included 6MWT distance, waist-to-height ratio, age and sex to predict VO2max (r = 0.79, r2 = 0.62, p < 0.001). Forty percentages of predicted VO2max values were within ±3 ml/kg/min of measured VO2max . The cut-point for FITNESSGRAM's "health-risk" fitness zone was 39.8 ml/kg/min (males: AUC = 0.88), and 33.5 ml/kg/min (females: AUC = 0.82). We present an algorithm to reasonably predict cardiorespiratory fitness for childhood cancer survivors, using inexpensive measures. This algorithm has useful clinical application, particularly when CPET is unavailable. Our algorithm has the potential to assist clinicians to identify survivors below the cut-points with increased cardiovascular disease-risk, to monitor and refer for tailored interventions with exercise specialists.


Assuntos
Sobreviventes de Câncer , Aptidão Cardiorrespiratória/fisiologia , Teste de Caminhada/métodos , Adolescente , Algoritmos , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Consumo de Oxigênio , Curva ROC , Razão Cintura-Estatura
15.
Cancer ; 126(4): 701-716, 2020 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-31821552

RESUMO

Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer.


Assuntos
Comunicação , Neoplasias/terapia , Pais/psicologia , Relações Médico-Paciente , Pesquisa Qualitativa , Adolescente , Criança , Pré-Escolar , Família , Feminino , Esperança , Humanos , Masculino , Neoplasias/psicologia , Confiança
16.
Oncologist ; 25(2): e351-e372, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-32043786

RESUMO

BACKGROUND: The Institute of Medicine recommends that survivorship care plans (SCPs) be included in cancer survivorship care. Our meta-analysis compares patient-reported outcomes between SCP and no SCP (control) conditions for cancer survivors. Our systematic review examines the feasibility of implementing SCPs from survivors' and health care professionals' perspectives and the impact of SCPs on health care professionals' knowledge and survivorship care provision. METHODS: We searched seven online databases (inception to April 22, 2018) for articles assessing SCP feasibility and health care professional outcomes. Randomized controlled trials comparing patient-reported outcomes for SCP recipients versus controls were eligible for the meta-analysis. We performed random-effects meta-analyses using pooled standardized mean differences for each patient-reported outcome. RESULTS: Eight articles were eligible for the meta-analysis (n = 1,286 survivors) and 50 for the systematic review (n = 18,949 survivors; n = 3,739 health care professionals). There were no significant differences between SCP recipients and controls at 6 months postintervention on self-reported cancer and survivorship knowledge, physical functioning, satisfaction with information provision, or self-efficacy or at 12 months on anxiety, cancer-specific distress, depression, or satisfaction with follow-up care. SCPs appear to be acceptable and potentially improve survivors' adherence to medical recommendations and health care professionals' knowledge of survivorship care and late effects. CONCLUSION: SCPs appear feasible but do not improve survivors' patient-reported outcomes. Research should ascertain whether this is due to SCP ineffectiveness, implementation issues, or inappropriate research design of comparative effectiveness studies. IMPLICATIONS FOR PRACTICE: Several organizations recommend that cancer survivors receive a survivorship care plan (SCP) after their cancer treatment; however, the impact of SCPs on cancer survivors and health care professionals is unclear. This systematic review suggests that although SCPs appear to be feasible and may improve health care professionals' knowledge of late effects and survivorship care, there is no evidence that SCPs affect cancer survivors' patient-reported outcomes. In order to justify the ongoing implementation of SCPs, additional research should evaluate SCP implementation and the research design of comparative effectiveness studies. Discussion may also be needed regarding the possibility that SCPs are fundamentally ineffective.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Neoplasias/terapia , Planejamento de Assistência ao Paciente , Sobreviventes , Sobrevivência
17.
J Natl Compr Canc Netw ; 18(8): 1067-1074, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32755982

RESUMO

BACKGROUND: Survivors of childhood cancer often experience treatment-related chronic health conditions. Survivorship care improves survivors' physical and mental health, yet many are disengaged from care. Innovative models of care are necessary to overcome patient-reported barriers to accessing survivorship care and to maximize survivors' health. METHODS: We piloted a novel survivorship program, called "Re-engage," a distance-delivered, nurse-led intervention aiming to engage, educate, and empower survivors not receiving any cancer-related care. Re-engage involves a nurse-led consultation delivered via telephone/online to establish survivors' medical history and needs. Participants completed questionnaires at baseline, 1 month postintervention, and 6-month follow-up. RESULTS: A total of 27 survivors who had not accessed survivorship care in the last 2 years participated (median age, 31 years; interquartile range [IQR], 27-39 years); of which, 82% were at high-risk for treatment-related complications. Participation in Re-engage was high (75%) and there was no attrition once survivors enrolled. At 1 month postintervention, 92% of survivors reported that Re-engage was "beneficial," which all survivors reported at 6-month follow-up. Survivors' overall satisfaction with their care increased from 52% before Re-engage to 84% at 1 month postintervention. Survivors' mean self-efficacy scores remained similar from baseline to 1 month postintervention (b = -0.33, 95% CI, -1.31 to 0.65), but increased significantly from baseline to 6-month follow-up (b = 1.64, 95% CI, 0.28-3.00). At 6-month follow-up, 73% of survivors showed an increase in health-related self-efficacy compared with baseline. CONCLUSIONS: Re-engage is a highly acceptable and feasible intervention and promotes health-related self-efficacy, which is integral to survivors being advocates for their own health. Further empirical work is needed to evaluate the long-term efficacy of Re-engage. TRIAL REGISTRATION: ACTRN12618000194268.


Assuntos
Sobreviventes de Câncer , Neoplasias , Participação do Paciente , Adulto , Criança , Humanos , Neoplasias/terapia , Papel do Profissional de Enfermagem , Qualidade de Vida , Inquéritos e Questionários , Sobrevivência
18.
Pediatr Blood Cancer ; 67 Suppl 3: e28193, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31994836

RESUMO

Childhood cancer survivor (CCS) numbers are increasing as a result of advances in both treatment and supportive care. This positive outcome is tempered by the recognition of a high burden of chronic health conditions. Here, we review the nutritional concerns of CCS, including dietary habits after treatment and the factors during treatment that may contribute to chronic health conditions. Dietary interventions that have been conducted in CCS will be summarized along with focused goals of these interventions. We will also address the need to leverage these interventions to reduce the risk of chronic disease in CCS.


Assuntos
Neoplasias/dietoterapia , Neoplasias/metabolismo , Apoio Nutricional/métodos , Sobreviventes de Câncer , Criança , Países Desenvolvidos , Comportamentos Relacionados com a Saúde , Humanos , Neoplasias/mortalidade , Neoplasias/reabilitação , Apoio Nutricional/economia , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do Tratamento
19.
Pediatr Blood Cancer ; 67(9): e28533, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32649015

RESUMO

BACKGROUND: Assess the acceptability and feasibility of delivering Reboot, a telephone dietary intervention to parents of pediatric cancer survivors. The research question asks whether tailored dietary support is acceptable and feasible to deliver to parents of young cancer survivors who have recently completed cancer treatment? PROCEDURE: Pre-post study. Nineteen parents of pediatric cancer survivors (aged 2-13 years) in remission, who had received cancer treatment at a tertiary children's hospital, less than 5 years prior to the intervention. Participants received four weekly 45-min telephone sessions led by a psychologist or dietitian and one postintervention booster session 6 weeks later. Sessions addressed strategies to increase children's vegetable and fruit intake. RESULTS: Of the 19 parents who started the intervention, 14 completed all sessions within 8 weeks and 12 completed the booster session within 10 weeks. The mean session duration was 47 min. All participants reported that Reboot increased their confidence and knowledge about promoting healthy eating habits to their child. CONCLUSIONS: Reboot is an acceptable intervention in young cancer survivors aimed at increasing vegetable and fruit intake after cancer treatment. IMPLICATIONS FOR CANCER SURVIVORS: The results from the Reboot pilot provides preliminary evidence that a targeted intervention to improve the diets of childhood cancer survivors may be feasible with future modification.


Assuntos
Sobreviventes de Câncer/psicologia , Fenômenos Fisiológicos da Nutrição Infantil , Dieta , Educação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/tratamento farmacológico , Pais/educação , Telefone/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Estudos de Viabilidade , Comportamento Alimentar , Feminino , Seguimentos , Promoção da Saúde , Humanos , Masculino , Neoplasias/patologia , Pais/psicologia , Prognóstico
20.
Pediatr Blood Cancer ; 67(7): e28339, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32386117

RESUMO

BACKGROUND: Physical activity and aerobic fitness are modifiable risk factors for cardiovascular disease (CVD) after childhood cancer. How survivors engage in physical activity remains unclear, potentially increasing CVD risk. We assessed survivors' physical activity levels, barriers and enablers, fitness, and identified predictors of fitness and physical activity stage of change. METHODS: Childhood cancer survivors (CCS; 8-18 years old) ≥1 year post-treatment were assessed for aerobic fitness (6-min walk test), used to extrapolate VO2max , and body composition (InBody 570). Survivors self-reported physical activity to determine stage of change (Patient-Centered Assessment and Counselling for Exercise). Physical activity and fitness were compared with guidelines and CVD-risk cut-points (VO2max  < 42 mL/kg/min: males; VO2max  < 35 mL/kg/min: females). Multiple regression and mediator-moderator analysis were used to identify fitness predictors and stage of change. RESULTS: One hundred two survivors (12.8 ± 3.3 years) participated (46% acute lymphoblastic leukaemia). Forty percent of males (VO2max  = 43.3 ± 6.3 mL/kg/min) and 28% of females (VO2max  = 36.5 ± 5.9 mL/kg/min) were in the CVD-risk category, while 25% met physical activity guidelines. Most prevalent physical activity barriers were fatigue (52%), preferring television instead of exercise (38%), and lacking time (34%). Predictive factors for reduced fitness included being older, female, higher waist-to-height ratio, higher screen time, and moderated by lower physical activity (r2  = 0.91, P < .001). Survivors with higher physical activity stage of change were male, lower body fat percentage, lower screen time, and lived with both parents (r = 0.42, P = .003). CONCLUSION: Aerobic fitness and physical activity of CCS is low compared with population norms, potentially increasing CVD risk. Addressing physical activity barriers and enablers, including reducing screen time, could promote regular physical activity, reducing CVD risk.


Assuntos
Sobreviventes de Câncer/psicologia , Exercício Físico , Fadiga/fisiopatologia , Força Muscular , Neoplasias/reabilitação , Qualidade de Vida , Adolescente , Sobreviventes de Câncer/estatística & dados numéricos , Criança , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/fisiopatologia , Neoplasias/psicologia , Prognóstico , Fatores de Risco
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA