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2.
J Med Internet Res ; 26: e47685, 2024 Mar 08.
Artigo em Inglês | MEDLINE | ID: mdl-38457204

RESUMO

BACKGROUND: Actively engaging patients with cancer and their families in monitoring and reporting medication safety events during care transitions is indispensable for achieving optimal patient safety outcomes. However, existing patient self-reporting systems often cannot address patients' various experiences and concerns regarding medication safety over time. In addition, these systems are usually not designed for patients' just-in-time reporting. There is a significant knowledge gap in understanding the nature, scope, and causes of medication safety events after patients' transition back home because of a lack of patient engagement in self-monitoring and reporting of safety events. The challenges for patients with cancer in adopting digital technologies and engaging in self-reporting medication safety events during transitions of care have not been fully understood. OBJECTIVE: We aim to assess oncology patients' perceptions of medication and communication safety during care transitions and their willingness to use digital technologies for self-reporting medication safety events and to identify factors associated with their technology acceptance. METHODS: A cross-sectional survey study was conducted with adult patients with breast, prostate, lung, or colorectal cancer (N=204) who had experienced care transitions from hospitals or clinics to home in the past 1 year. Surveys were conducted via phone, the internet, or email between December 2021 and August 2022. Participants' perceptions of medication and communication safety and perceived usefulness, ease of use, attitude toward use, and intention to use a technology system to report their medication safety events from home were assessed as outcomes. Potential personal, clinical, and psychosocial factors were analyzed for their associations with participants' technology acceptance through bivariate correlation analyses and multiple logistic regressions. RESULTS: Participants reported strong perceptions of medication and communication safety, positively correlated with medication self-management ability and patient activation. Although most participants perceived a medication safety self-reporting system as useful (158/204, 77.5%) and easy to use (157/204, 77%), had a positive attitude toward use (162/204, 79.4%), and were willing to use such a system (129/204, 63.2%), their technology acceptance was associated with their activation levels (odds ratio [OR] 1.83, 95% CI 1.12-2.98), their perceptions of communication safety (OR 1.64, 95% CI 1.08-2.47), and whether they could receive feedback after self-reporting (OR 3.27, 95% CI 1.37-7.78). CONCLUSIONS: In general, oncology patients were willing to use digital technologies to report their medication events after care transitions back home because of their high concerns regarding medication safety. As informed and activated patients are more likely to have the knowledge and capability to initiate and engage in self-reporting, developing a patient-centered reporting system to empower patients and their families and facilitate safety health communications will help oncology patients in addressing their medication safety concerns, meeting their care needs, and holding promise to improve the quality of cancer care.


Assuntos
Tecnologia Digital , Neoplasias , Adulto , Masculino , Humanos , Estudos Transversais , Transferência de Pacientes , Inquéritos e Questionários , Neoplasias/tratamento farmacológico
4.
Stud Health Technol Inform ; 310: 504-508, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269860

RESUMO

Dramatic improvements in patient-facing technologies have demonstrated the potential to transform healthcare delivery for a 360-degree holistic view of care. A key question regarding how such technologies affect patient self-reporting still needs to be answered. This study presents the technologies and their associated key variables via quantitative analysis. Associations were found between single-platform and web-based applications (apps), Android apps and physician view, mental health disease, and user feedback. The results are intended to inform future design, development, and evaluation of patient-facing technologies. More systematic, theory-driven, framework-based design and evaluation are necessary to fully characterize the effectiveness and maintenance of patient-facing technologies toward a sustainable strategy.


Assuntos
Transtornos Mentais , Médicos , Humanos , Transtornos Mentais/diagnóstico , Transtornos Mentais/terapia , Pacientes , Autorrelato , Software
5.
Stud Health Technol Inform ; 310: 539-543, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269867

RESUMO

"Infobuttons" spearheaded electronic health records (EHR) based decision support by offering automated knowledge resources to physicians. However, how such a mechanism could be leveraged to provide optimal resources to patients remains unanswered. Informatics approaches are expected to utilize more relevant information beyond EHR, such as patient-reported outcomes, to support clinical decisions. This pilot study is intended to explore how patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE) in EHR can be incorporated and how to recommend tailored content to cancer patients via automated feedback.


Assuntos
Registros Eletrônicos de Saúde , Neoplasias , Humanos , Retroalimentação , Projetos Piloto , Conhecimento
6.
Stud Health Technol Inform ; 310: 1432-1433, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269682

RESUMO

Patient-reported outcome measures (PROMs) have been increasingly integrated into patient-facing technologies to engage and empower patients in cancer self-management at home. However, researchers and developers face several challenges in selecting the best-suited PROMs for patient-facing technologies, due to the complex nature of the disease, the multitude of PROMs with high psychometric quality, and the lack of clear standards for PROM utilization. In this paper, we have discussed these challenges, illustrated by breast cancer instruments.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/terapia , Pacientes , Psicometria , Tecnologia , Medidas de Resultados Relatados pelo Paciente
7.
JNCI Cancer Spectr ; 8(1)2024 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-38230706

RESUMO

BACKGROUND: The Patient Cloud ePRO app was adopted by the National Cancer Institute National Clinical Trials Network (NCTN) to facilitate capturing electronic patient-reported (ePRO) outcome data, but use has been low. The study objectives were to test whether a patient-targeted ePRO educational resource (ePRO-E) would increase ePRO intent (number of users) and improve data quality (high quality: ≥80% of the required surveys submitted) within an ongoing NCTN study. METHODS: The ePRO-E intervention, a patient-targeted educational resource (written material and 6-minute animated YouTube video), was designed to address ePRO barriers. ePRO intent and data quality were compared between 2 groups (N = 69): a historical control group and a prospectively recruited intervention group exposed to ePRO-E. Covariates included technology attitudes, age, sex, education, socioeconomic status, and comorbidity. RESULTS: Intervention group ePRO intent (78.8%) was statistically significantly higher than historical control group intent (47.1%) (P = .03). Patients choosing ePRO versus paper surveys had more positive and higher technology attitudes scores (P = .03). The odds of choosing ePRO were 4.7 times higher (95% Confidence Interval [CI] = 1.2 to 17.8) (P = .02) among intervention group patients and 5.2 times higher (95% CI = 1.3 to 21.6) (P = .02) among patients with high technology attitudes scores, after controlling for covariates. However, the 80% submission rate (percentage submitting ≥80% of required surveys) in the ePRO group (30.6%) was statistically significantly lower than in the paper group (57.9%) (P = .05). CONCLUSIONS: ePRO-E exposure increased ePRO intent. High technology attitudes scores were associated with ePRO selection. Since the ePRO survey submission rate was low, additional strategies are needed to promote high-quality data submission.


Assuntos
Educação de Pacientes como Assunto , Medidas de Resultados Relatados pelo Paciente , Humanos , Inquéritos e Questionários , Intenção , Atitude Frente aos Computadores
8.
JAMIA Open ; 6(4): ooad104, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38098479

RESUMO

Objective: This article provides insight into our process and considerations for selecting patient-reported outcome measures (PROMs) designed for self-reporting symptoms and quality-of-life among breast cancer (BCA) patients undergoing oral anticancer agent treatment via a patient-facing technology (PFT) platform. Methods: Following established guidelines, we conducted a thorough assessment of a specific set of PROMs, comparing their content to identify the most suitable options for studying BCA patients. Results: We recommend utilizing the combination of EORTC QLQ-C30 + EORTC QLQ-BR45 as the preferred instrument, especially when developing a dedicated "breast cancer-only" application. Discussion: When developing and maintaining a dashboard for a PFT platform that includes multiple cancer types, it is important to consider the feasibility of interface design and workload. To achieve this, we recommend using PRO-CTCAE+PROMIS 10 GH for the PFT. Moreover, it is important to consider adding ad hoc items to complement the chosen PROM(s). Conclusion: This article describes our efforts to identify PROMs for self-reported data while considering patient and developer burdens, providing guidance to PFT developers facing similar challenges in PROM selection.

9.
J Clin Epidemiol ; 163: 62-69, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37783400

RESUMO

OBJECTIVES: Oncology clinical trials are recommended to better reflect real-world cancer patient populations and to increase patient access to new treatments in trials. The influence of comorbidities on trial participation is unclear. This study examined the association of having comorbidities and patients' experiences with clinical trial discussion or actual participation. STUDY DESIGN AND SETTING: We included 958 cancer survivors from Health Information National Trends Survey-Surveillance, Epidemiology, and End Results Program. Trial discussion was defined as whether their medical team discussed cancer clinical trials, and trial participation was defined as whether they participated. Comorbidities included diabetes, hypertension, heart condition, chronic lung disease, and depression/anxiety disorder. Design-based logistic regression results were conducted. RESULTS: Seventy-five percent of patients had one or more comorbidities, commonly having hypertension (56%) and diabetes (26%). Only 15% of participants reported trial discussion and 8% reported trial participation. Having one or more comorbidities was significantly associated with lower rates of trial discussion in univariate analysis (22.9% vs. 12.1%, odds ratio = 0.46, P = 0.001), and such association was pertained in adjusted logistic regression (20.5% vs. 12.8%, adjusted odds ratio = 0.54, P = 0.02). CONCLUSION: Findings suggest patients with comorbidities were underrepresented in cancer clinical trials, implying a potential lack of representativeness among trial participants.


Assuntos
Diabetes Mellitus , Hipertensão , Neoplasias , Humanos , Programa de SEER , Neoplasias/epidemiologia , Neoplasias/terapia , Comorbidade , Diabetes Mellitus/epidemiologia , Diabetes Mellitus/terapia
10.
JCO Clin Cancer Inform ; 7: e2300007, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37677111

RESUMO

PURPOSE: To describe clinical research professionals (CRPs)' experiences with electronic patient-reported outcome (ePRO) data collection systems in oncology clinical trials and identify correlates of CRPs' attitude toward technology. METHODS: An online survey was conducted among 210 CRPs from 125 National Cancer Institute-funded research sites. Measures included CRPs' demographic characteristics, working years, employment locations, and previous experiences with various types of ePROs. Their attitude toward technology was measured by the Technology Attitude Scale-Adapted. The Wilcoxon signed-rank test was used to compare two subdomains of attitude (perceived usefulness [PU] and perceived ease of use [PEU]). Multiple linear regression was used to explore correlates of (1) overall attitude, (2) PU, and (3) PEU. The significance level was 5%. RESULTS: Participants' median age was 41 years (range, 21-67). Most were female (90%) and White (82%). More than half of the participants had previous experiences with web-based ePROs using patients' own devices (72%) or site-/sponsor-provided on-site devices (eg, kiosks or tablets; 64%). CRPs who were 60 years or older (ß = -0.32, P < .05) or worked for 10-20 years (ß = -0.11, P < .05) had relatively negative attitudes, controlling for other factors. Previous experiences with more ePRO types were associated with more positive attitudes (ß = 0.08, P = .02). Similar correlates were found with PU but not with PEU. CONCLUSION: This study revealed that CRPs had various experiences with ePRO systems and attitudes toward technology. Age, working years, and previous experiences with ePROs were correlates of overall attitude toward technology and PU. These findings suggest necessary targeted training to facilitate ePRO use in oncology clinical trials by improving CRPs' awareness and attitude toward technology.


Assuntos
Oncologia , Neoplasias , Humanos , Feminino , Adulto , Masculino , Coleta de Dados , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente , Eletrônica
11.
J Med Internet Res ; 25: e46721, 2023 05 31.
Artigo em Inglês | MEDLINE | ID: mdl-37256672

RESUMO

BACKGROUND: Despite the benefits of digital health technology use, older adults with cancer (ie, aged 65 years) have reported challenges to technology adoption. However, there has been a lack of a good understanding of their digital health technology use patterns and the associated influential factors in the past few years. OBJECTIVE: This study aimed to examine the trends in and factors associated with digital health technology use among older adults with cancer. METHODS: The National Health and Aging Trends Study (NHATS) data set is a national longitudinal cohort study with annual survey waves of Medicare beneficiaries 65 years and older. Participants were community-dwelling older adults who self-reported previous or current cancer diagnoses in each round. The study sample size of each round ranged from 1996 (2015) to 1131 (2021). Digital health technology use was defined as using the internet or online in the last month to order or refill prescriptions, contact medical providers, handle Medicare or other insurance matters, or get information about their health conditions. The association of sociodemographics, clinical factors (self-rated health, chronic conditions, difficulties in activities of daily living, dementia, anxiety, and depression), and physical function (Short Physical Performance Battery and grip strength) with digital health technology use was examined using design-based logistic regression. All statistical analyses accounted for the complex sample design. RESULTS: The prevalence of any digital health technology use increased from 36% in 2015 to 45% in 2019. In 2020-2021, which was amid the COVID-19 pandemic, it ranged from 51% to 52%. In terms of each digital health technology use behavior, in 2015, overall, 28% of older cancer survivors used digital health technology to obtain health information, followed by contacting clinicians (19%), filling prescriptions (14%), and handling insurance (11%). Greater use of digital health technology was associated with younger age, being White, having a college or higher education, having a higher income, having more comorbidities, nondementia, and having a higher gait speed. CONCLUSIONS: Digital health technology use in older adults with cancer has gradually increased, particularly during the COVID-19 pandemic. However, socioeconomic and racial disparities have remained in older cancer survivors. Additionally, older adults with cancer may have some unique features associated with digital health technology use; for example, their use of digital health may be increased by their comorbidities (ie, health care needs) and reduced by their frailty.


Assuntos
COVID-19 , Neoplasias , Humanos , Idoso , Estados Unidos , Medicare , Estudos Longitudinais , Atividades Cotidianas , Pandemias , COVID-19/epidemiologia , Tecnologia Biomédica , Neoplasias/epidemiologia , Neoplasias/terapia
12.
Telemed J E Health ; 29(6): 866-874, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36355055

RESUMO

Purpose: To describe cancer survivors' use of electronic communication (e-communication) with clinicians and identify factors associated with their use, including the COVID-19 pandemic. Methods: Secondary analysis included cancer survivors (N = 1,482) from the combined Health Information National Trends Survey HINTS 5 Cycle 3 and Cycle 4. Survivors' use of e-communication was defined by at least one of four e-communication use behaviors in the past 12 months. Bivariate analysis and logistic regression were conducted to examine factors associated with e-communication use. All analyses considered the complex survey design using the jackknife replication method. Results: The prevalence of e-communication use was 64% among cancer survivors. The overall e-communication use slightly increased after the start of the COVID-19 pandemic (63% vs. 64%, p = 0.79). Older adults (≥65 years old) were less likely to use e-communication (odds ratio [OR] = 0.55; 95% confidence interval [CI], 0.36-0.86); survivors who were white (OR = 2.30; 95% CI, 1.36-3.86), living in a metro area (OR = 2.47; 95% CI, 1.44-4.27), diagnosed with breast cancer (OR = 2.03; 95% CI, 1.06-3.88), seeking cancer-related information previously (OR = 2.89; 95% CI, 1.83-4.58), or having a regular health care provider (OR = 2.07,; 95% CI, 1.10-3.88) were more likely to use e-communication. The start of the COVID-19 pandemic was marginally associated with the increased e-communication use (p = 0.053) when other variables were controlled. Conclusion: This nationally representative survey analysis has identified disparities in e-communication use among cancer survivors and revealed the potential increase in e-communication use under the impact of the COVID-19 pandemic. Additional support is clearly warranted for those older, nonwhite, living in rural areas, or without a regular provider, to promote their e-communication use for the delivery of optimal and high-quality cancer care.


Assuntos
Neoplasias da Mama , COVID-19 , Sobreviventes de Câncer , Neoplasias , Humanos , Idoso , Feminino , Pandemias , COVID-19/epidemiologia , Comunicação , Neoplasias/epidemiologia , Neoplasias/terapia , Eletrônica
13.
BMC Cancer ; 22(1): 950, 2022 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-36057578

RESUMO

BACKGROUND: More than 60% of cancer cases occur in older adults, and many are treated with oral anticancer agents. Yet, the treatment tolerability in older adults has not been fully understood due to their underrepresentation in oncology clinical trials, creating challenges for treatment decision-making and symptom management. The objective of this study was to investigate the tolerance of capecitabine, an example of oral chemotherapy, among older adults with cancer and explore factors associated with capecitabine-related side effects and treatment changes, to enhance supportive care. METHODS: A secondary analysis used combined data from electronic health records and a pilot study of patient-reported outcomes, with a total of 97 adult patients taking capecitabine during 2016-2017, including older adult patients aged 65 years or older (n = 43). The data extracted included patient socio-demographics, capecitabine information, side effects, and capecitabine treatment changes (dose reductions and dose interruptions). Bivariate correlations, negative binomial regression, and multiple linear regression were conducted for data analysis. RESULTS: Older adults were more likely to experience fatigue (86% vs. 51%, p = .001) and experienced more severe fatigue (ß = 0.44, p = 0.03) and hand-foot syndrome (HFS) (ß = 1.15, p = 0.004) than younger adults. The severity of fatigue and HFS were associated with the number of outpatient medications (ß = 0.06, p = 0.006) and the duration of treatment (ß = 0.50, p = 0.009), respectively. Correlations among side effects presented different patterns between younger and older adults. Although more older adults experienced dose reductions (21% vs. 13%) and dose interruptions (33% vs. 28%) than younger adults, the differences were not statistically different. Female sex, breast cancer diagnosis, capecitabine monotherapy, and severe HFS were found to be associated with dose reductions (p-values < 0.05). CONCLUSIONS: Older adults were less likely to tolerate capecitabine treatment and had different co-occurring side effects compared to younger adults. While dose reductions are common among older adults, age 65 years or older may not be an independent factor of treatment changes. Other socio-demographic and clinical factors may be more likely to be associated. Future studies can be conducted to further explore older adults' tolerance to a variety of oral anticancer agents to generate more evidence to support optimal treatment decision-making and symptom management.


Assuntos
Antineoplásicos , Neoplasias da Mama , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Síndrome Mão-Pé , Idoso , Antimetabólitos Antineoplásicos/uso terapêutico , Antineoplásicos/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Capecitabina/efeitos adversos , Registros Eletrônicos de Saúde , Fadiga/induzido quimicamente , Feminino , Fluoruracila/uso terapêutico , Humanos , Medidas de Resultados Relatados pelo Paciente , Projetos Piloto
14.
JMIR Mhealth Uhealth ; 10(3): e35157, 2022 03 10.
Artigo em Inglês | MEDLINE | ID: mdl-35266873

RESUMO

BACKGROUND: Accurate measurement and monitoring of patient medication adherence is a global challenge because of the absence of gold standard methods for adherence measurement. Recent attention has been directed toward the adoption of technologies for medication adherence monitoring, as they provide the opportunity for continuous tracking of individual medication adherence behavior. However, current medication adherence monitoring technologies vary according to their technical features and data capture methods, leading to differences in their respective advantages and limitations. Overall, appropriate criteria to guide the assessment of medication adherence monitoring technologies for optimal adoption and use are lacking. OBJECTIVE: This study aims to provide a narrative review of current medication adherence monitoring technologies and propose a set of technology assessment criteria to support technology development and adoption. METHODS: A literature search was conducted on PubMed, Scopus, CINAHL, and ProQuest Technology Collection (2010-present) using the combination of keywords medication adherence, measurement technology, and monitoring technology. The selection focused on studies related to medication adherence monitoring technology and its development and use. The technological features, data capture methods, and potential advantages and limitations of the identified technology applications were extracted. Methods for using data for adherence monitoring were also identified. Common recurring elements were synthesized as potential technology assessment criteria. RESULTS: Of the 3865 articles retrieved, 98 (2.54%) were included in the final review, which reported a variety of technology applications for monitoring medication adherence, including electronic pill bottles or boxes, ingestible sensors, electronic medication management systems, blister pack technology, patient self-report technology, video-based technology, and motion sensor technology. Technical features varied by technology type, with common expectations for using these technologies to accurately monitor medication adherence and increase adoption in patients' daily lives owing to their unobtrusiveness and convenience of use. Most technologies were able to provide real-time monitoring of medication-taking behaviors but relied on proxy measures of medication adherence. Successful implementation of these technologies in clinical settings has rarely been reported. In all, 28 technology assessment criteria were identified and organized into the following five categories: development information, technology features, adherence to data collection and management, feasibility and implementation, and acceptability and usability. CONCLUSIONS: This narrative review summarizes the technical features, data capture methods, and various advantages and limitations of medication adherence monitoring technology reported in the literature and the proposed criteria for assessing medication adherence monitoring technologies. This collection of assessment criteria can be a useful tool to guide the development and selection of relevant technologies, facilitating the optimal adoption and effective use of technology to improve medication adherence outcomes. Future studies are needed to further validate the medication adherence monitoring technology assessment criteria and construct an appropriate technology assessment framework.


Assuntos
Avaliação da Tecnologia Biomédica , Telemedicina , Humanos , Adesão à Medicação , Tecnologia , Telemedicina/métodos
15.
Cancer Treat Res Commun ; 28: 100420, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34225104

RESUMO

This systematic review provides a high-quality synthesis of the empirical evidence regarding chemotherapy-induced peripheral neuropathy (CIPN) characteristics and patterns described in studies of children who received neurotoxic chemotherapy to treat cancer. PubMed, CINAHL, PsycINFO, and Embase were searched for articles published 2009 - 2019, yielding 861. Forty-two papers met the eligibility criteria, including 31 that described characteristics and patterns of vincristine-induced CIPN. Fifty-seven percent of articles were of low to moderate quality; measurement flaws were the most common limitations. The reported CIPN incidence varies widely (2.8%-100%) depending on risk factors (e.g., race) and the measurement approach. Incidence rates of sensory, motor, autonomic CIPN, and pain were 12-28%, 50-72%, 0.8-83% and 5.7-44%, respectively. The evidence suggests that sensory and motor neuropathy, pain, and functional deficits are common and can persist into adulthood. Caucasian race is a risk factor and, contrary to prior thinking, cumulative chemotherapy dosage alone does not predict CIPN severity. The influence of other risk factors is less clear, and studies to date have not explored potential interactions among race, genetics, age, sex, drug metabolism, and nutritional status, among other factors.


Assuntos
Antineoplásicos/efeitos adversos , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Criança , Humanos
17.
J Med Internet Res ; 23(3): e24638, 2021 03 12.
Artigo em Inglês | MEDLINE | ID: mdl-33709929

RESUMO

BACKGROUND: Electronic symptom self-reporting systems (e-SRS) have been shown to improve symptoms and survival in patients with cancer. However, patient engagement in using e-SRS for voluntary symptom self-reporting is less optimal. Multiple factors can potentially affect patients' acceptance and engagement in using home-based e-SRS. However, such factors have not been fully explored in cancer populations. OBJECTIVE: The aim of this study is to understand the acceptance and use of home-based e-SRS by patients with cancer and identify associated facilitators and barriers. METHODS: PubMed, CINAHL, Scopus, and PsycINFO (January 2010 to March 2020) were searched using a combination of Medical Subject Headings (MeSH) terms and keywords such as symptom self-reporting, electronic/technology, cancer, and their synonyms. Included studies focused on the use of home-based e-SRS by patients with cancer and their families. Studies on patients' use of e-SRS in clinical settings only were excluded. Of the 3740 papers retrieved, 33 were included in the final review. Factors associated with patient acceptance and use of e-SRS were extracted and synthesized. RESULTS: Most e-SRS were web based (22/33, 66%) or mobile app based (9/33, 27%). The e-SRS initial acceptance, represented by patient enrollment rates, ranged from 40% (22/55) to 100% (100/100). High e-SRS acceptance was rated by 69% (59/85) to 77.6% (337/434) of the patients after they used the system. The e-SRS use, measured by patients' response rates to questionnaires (ranging from 1596/3521, 45.33% to 92%) or system log-on rates (ranging from 4/12, 33% to 99/100, 99%), declined over time in general patterns. Few studies (n=7) reported e-SRS use beyond 6 months, with the response rates ranging from 62% (40/64) to 85.1% (541/636) and the log-on rates ranging from 63.6% (103/162) to 77% (49/64). The availability of compatible devices and technical support, interactive system features, information accessibility, privacy, questionnaire quality, patient physical/psychosocial status, and age were associated with patient acceptance and use of home-based e-SRS. CONCLUSIONS: Acceptance and use of home-based e-SRS by patients with cancer varied significantly across studies, as assessed by a variety of approaches. The lack of access to technology has remained a barrier to e-SRS adoption. Interactive system features and personalized questionnaires may increase patient engagement. More studies are needed to further understand patients' long-term use of home-based e-SRS behavior patterns to develop personalized interventions to support symptom self-management and self-reporting of patients with cancer for optimal health outcomes.


Assuntos
Aplicativos Móveis , Neoplasias , Autogestão , Telemedicina , Eletrônica , Humanos , Neoplasias/terapia , Autorrelato
18.
J Pediatr Oncol Nurs ; 38(2): 131-141, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33331218

RESUMO

Background: Chemotherapy-induced peripheral neuropathy (CIPN) is commonly experienced by children receiving neurotoxic chemotherapy. No validated pediatric CIPN patient-reported outcome (PRO) measures exist. Purpose: To test sensitivity, internal consistency reliability, content and convergent validity, and feasibility of the Pediatric Chemotherapy-Induced Neuropathy (P-CIN), an electronic PRO measure for assessing CIPN in children who received neurotoxic chemotherapy. Method: Five experts evaluated content validity of the 14-item P-CIN. Children 5 to 17 years old with CIPN (N = 79) completed the P-CIN via tablet computer; a subset (n = 26) also underwent neurological examinations using the Pediatric-Modified Total Neuropathy Score. Following preliminary analyses, one item was deleted and three others modified. The revised P-CIN was retested with patients (n = 6) who also completed the Bruininks-Oseretsky Test of Motor Proficiency motor function assessment. Means, item response ranges, standard deviations, content validity indexes, Cronbach's alphas, and correlation coefficients were calculated. Results: Mean participant age was 11.25 (SD = 4.0) years. Most had acute leukemia (62.5%) and received vincristine (98.7%). Content validity index coefficients ranged from .80 to 1.0 (p = .05). For 9 of 14 items, responses ranged from 0 to 4 or 5; response ranges for toe numbness, pick up a coin, and three of four pain items were 0 to 3. After deleting one item, Cronbach's alpha coefficient was .83. P-CIN scores were strongly associated with Pediatric-Modified Total Neuropathy Score (r = .52, p < .01) and Bruininks-Oseretsky Test of Motor Proficiency (r = -.83, p = .04) scores. Sixty-eight percent of children 6 to 17 years old completed P-CIN independently. Discussion: Preliminary evidence suggests that the 13-item P-CIN is internally consistent, is valid, and can be completed independently by children ≥ 6 years. However, we recommend additional testing.


Assuntos
Antineoplásicos , Neoplasias , Doenças do Sistema Nervoso Periférico , Adolescente , Antineoplásicos/efeitos adversos , Criança , Pré-Escolar , Humanos , Neoplasias/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/diagnóstico , Reprodutibilidade dos Testes , Inquéritos e Questionários
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