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1.
Pain Manag Nurs ; 25(2): 170-180, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38448311

RESUMO

BACKGROUND: Interdisciplinary pediatric chronic pain programs are ideal treatment settings for youth with chronic pain who are complex from a biopsychosocial perspective. There is currently no evidence-based clinical decision support to guide nurses triaging patients to such programs, which increases the risk for haphazard triage decisions. AIMS: To explore and describe the decision-making practices of and contextual influences on nurses triaging patients to interdisciplinary pediatric chronic pain programs. DESIGN: A qualitative exploratory descriptive design. SETTINGS: Interdisciplinary Pediatric Chronic Pain Programs. PARTICIPANTS/SUBJECTS: In all, 12 nurses across 11 different interdisciplinary pediatric chronic pain programs participated in this study. METHODS: Individual, semi-structured interviews were conducted, transcribed verbatim, and analyzed using concurrent content analysis, guided by the Cognitive Continuum Theory and the Theoretical Domains Framework. RESULTS: Findings focused on the complexity of the pediatric chronic pain population and the leading role nurses play in triage without evidence-based guidance. Analysis generated three prominent themes: (1) nurse-led triage determinants; (2) process of triage decision-making; and (3) external influences on triage decision-making. CONCLUSIONS: Triage decision making in the setting of interdisciplinary pediatric chronic pain programs is complex and often led by nurses. There is a desire amongst nurses to adopt an evidence-based clinical decision support triage tool (CDS), which may streamline the referral and triage process and foster a system whereby patients in highest need for interdisciplinary care are best prioritized.


Assuntos
Dor Crônica , Enfermeiras e Enfermeiros , Adolescente , Humanos , Criança , Triagem , Dor Crônica/terapia , Tomada de Decisões
2.
J Clin Nurs ; 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38894583

RESUMO

AIM: The systematic review aims to synthesize the literature examining the effectiveness of nurse-led remote digital support on health outcomes in adults with chronic conditions. BACKGROUND: Adults with chronic diseases have increased rates of mortality and morbidity and use health care resources at a higher intensity than those without chronic conditions-placing strain on the patient, their caregivers and health systems. Nurse-led digital health disease self-management interventions have potential to improve outcomes for patients with chronic conditions by facilitating care in environments other that the hospital setting. DESIGN AND METHODS: We searched PubMed/MEDLINE, Embase, PsycINFO and Cochrane Central databases from inception to 7 December 2022. We included randomized controlled trials assessing the impact of nurse-led remote digital support interventions compared to usual care on health-related outcomes in adults with chronic illness. The Cochrane risk-of-bias tool was used to assess bias in studies. Outcomes were organized into four categories: self-management, clinical outcomes, health care resource use and satisfaction with care. Results are presented narratively based on statistical significance. RESULTS: Forty-four papers pertaining to 40 unique studies were included. Interventions most targeted diabetes (n = 11) and cardiovascular disease (n = 8). Websites (n = 10) and mobile applications (n = 10) were the most used digital modalities. Nurses supported patients either in response to incoming patient health data (n = 14), virtual appointment (n = 8), virtual health education (n = 5) or through a combination of these approaches (n = 13). Positive impacts of nurse-led digital chronic disease support were identified in each outcome category. Mobile applications were the most effective digital modality. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Results show that nurse-led remote digital support interventions significantly improve self-management capacity, clinical health outcomes, health care resource use and satisfaction with care. Such interventions have potential to support overall health for adults with chronic conditions in their home environments.

3.
Nurs Educ Perspect ; 2023 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-37253190

RESUMO

ABSTRACT: The COVID-19 pandemic has shifted how nursing education and information are delivered, with many classes being moved to an online platform. This opened opportunities to find creative ways to engage students. As a result, an entirely online infographic assignment for final-year baccalaureate nursing students was created. The focus of this assignment was to engage students to identify important health issues, consider multilevel solutions, and communicate information to relevant stakeholders using visual storytelling for maximum impact.

4.
Curr Oncol Rep ; 24(4): 443-450, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35150393

RESUMO

PURPOSE OF REVIEW: We aimed to review the recent research on the childhood cancer symptom experience pertaining to socioeconomic factors, biology and genetics, growth and development, family psychosocial dynamics, and social and treating environments to begin to formulate recommendations for a personalized approach to symptom management. RECENT FINDINGS: Cancer symptoms are common and distressing in children and negatively impact child and family quality of life. Many interacting factors influence children's cancer symptoms experiences, including the assessment and management of such symptoms. This paper highlights several gaps in the research related to the cancer symptom experience including routine symptom assessment, the impact of socioeconomic, biological, and genetic factors on symptoms, and the establishment of effective symptom management partnerships with families. Based on our findings, we provide recommendations related to that research which is ready to be implemented into clinical practice and areas for needed future efforts.


Assuntos
Neoplasias , Qualidade de Vida , Criança , Humanos , Neoplasias/tratamento farmacológico , Avaliação de Sintomas
5.
J Med Internet Res ; 24(2): e29821, 2022 02 21.
Artigo em Inglês | MEDLINE | ID: mdl-35188476

RESUMO

BACKGROUND: The need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media-based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. OBJECTIVE: This review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media-based research approaches, as well as recommendations for prospective campaigns. METHODS: We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. RESULTS: A total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform-based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members' and external organizations' social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. CONCLUSIONS: Social media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.


Assuntos
Saúde , Mídias Sociais , Humanos , Conhecimento , Pesquisa
6.
Can Oncol Nurs J ; 32(3): 381-386, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-38919683

RESUMO

Goal: This study aims to explore how healthcare professionals perceive home-based pediatric cancer care provided in French. Methodology: A qualitative descriptive study was conducted using semi-directed individual interviews of 22 healthcare professionals. A thematic analysis of the transcribed interviews was carried out independently by two members of the research team. Findings: Pediatric cancer care is readily available in French in Quebec, but access to French-language services in Ontario is limited. The possible causes and effects of this lack of access and potential solutions are discussed in this paper. Conclusion: The perceptions compiled in this study should be taken into account to help provide quality home-based pediatric cancer care in French.

7.
Support Care Cancer ; 29(2): 841-849, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32495032

RESUMO

PURPOSE: To determine the quality of cancer symptom management when evidence from clinical practice guidelines are used in telephone-based oncology nursing services. METHODS: Guided by the Knowledge to Action Framework, we conducted a quality improvement (QI) project focused on "monitoring knowledge use" (e.g., use of practice guides) and "measuring outcomes." In 2016, 15 Pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) practice guides that synthesize evidence from guidelines were implemented with training for all oncology nurses at a regional ambulatory oncology program. Eighteen months post-implementation, Symptom Management Analysis Tool (SMAT) was used to analyze audio-recorded calls and related documentation of cancer symptom management. RESULTS: Of 113 audio-recorded calls, 66 were COSTaRS symptoms (58%), 43 other symptoms (38%), and 4 medically complex situations (4%). Of 66 recorded calls, 63 (95%) were documented. Average SMAT quality score was 71% (range 21-100%) for audio-recordings and 63% (range 19-100%) for documentation of calls. COSTaRS practice guide use was documented in 33% calls. For these calls, average SMAT quality scores were 74% with COSTaRS versus 69% without COSTaRS for audio-recording and 73% (range 33-100%) with COSTaRS versus 58% without COSTaRS for documentation. Patient outcomes indicated symptom was resolved (38%), worse (25%), unchanged (3%), or unknown (33%). Eight patients (13%) had an ED visit within 14 days post that was related to the symptom discussed. CONCLUSIONS: Only a third of nurses indicated use of COSTaRS practice guides. There were higher quality symptom management scores when COSTaRS use was reported. Nurses documented less than what they discussed.


Assuntos
Neoplasias/enfermagem , Telemedicina/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Instituições de Assistência Ambulatorial , Canadá , Feminino , Humanos , Masculino , Oncologia/métodos , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/terapia , Enfermagem Oncológica/educação , Cuidados Paliativos/métodos , Melhoria de Qualidade , Telefone , Triagem
8.
J Pediatr Nurs ; 59: e13-e19, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33752933

RESUMO

PURPOSE: Pain is a distressing symptom for children and adolescents with cancer and is experienced by individuals differently. This study sought to determine subgroups according to their pain experiences, and how demographic, clinical, and quality of life (QOL)-related characteristics might differ across subgroups. DESIGN AND METHODS: This cross-sectional study recruited 187 pediatric patients with cancer aged 8 to 17 years old and asked them to complete measures of pain intensity, pain duration, pain interference and pain control using the Chinese translation of the validated questionnaire from the Pain Squad app, as well as 7 PROMIS measures assessing QOL-related outcomes. Latent profile analysis (LPA) was used to identify latent subgroups. RESULTS: Three subgroups of children were identified: low-pain/low-duration (69.5%), moderate-pain/high-duration (19.8%), and high-pain/moderate-duration (10.7%). Hospitalized children were more likely to be in the moderate-pain/high-duration subgroup. Children in the high-pain/moderate-duration subgroup were more likely to be cared for by unemployed caregivers. Scores on depressive symptoms (p = 0.002), anger (p < 0.001), anxiety (p = 0.045), fatigue (p = 0.044), and mobility (p = 0.008) questionnaire were significantly worse in the high-pain/moderate-duration subgroup than the other two subgroup. PRACTICE IMPLICATIONS: This study provides a scientific foundation for further studies exploring predictive factors related to pain experiences. More targeted treatment strategies targeting the specific characteristics of each subgroup will help improve patients' QOL and use of medical resources. CONCLUSIONS: The 3 identified pain subgroups demonstrate the heterogeneity in pain experiences among pediatric patients with cancer. Knowledge of these subgroups can assist clinicians in better identifying and targeting pain treatment for children with cancer.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Criança , China/epidemiologia , Estudos Transversais , Humanos , Neoplasias/complicações , Dor
9.
J Med Internet Res ; 22(6): e16480, 2020 06 16.
Artigo em Inglês | MEDLINE | ID: mdl-32348259

RESUMO

BACKGROUND: The most commonly used means to assess pain is by patient self-reported questionnaires. These questionnaires have traditionally been completed using paper-and-pencil, telephone, or in-person methods, which may limit the validity of the collected data. Electronic data capture methods represent a potential way to validly, reliably, and feasibly collect pain-related data from patients in both clinical and research settings. OBJECTIVE: The aim of this study was to conduct a systematic review and meta-analysis to compare electronic and conventional pain-related data collection methods with respect to pain score equivalence, data completeness, ease of use, efficiency, and acceptability between methods. METHODS: We searched the Medical Literature Analysis and Retrieval System Online (MEDLINE), Excerpta Medica Database (EMBASE), and Cochrane Central Register of Controlled Trials (CENTRAL) from database inception until November 2019. We included all peer-reviewed studies that compared electronic (any modality) and conventional (paper-, telephone-, or in-person-based) data capture methods for patient-reported pain data on one of the following outcomes: pain score equivalence, data completeness, ease of use, efficiency, and acceptability. We used random effects models to combine score equivalence data across studies that reported correlations or measures of agreement between electronic and conventional pain assessment methods. RESULTS: A total of 53 unique studies were included in this systematic review, of which 21 were included in the meta-analysis. Overall, the pain scores reported electronically were congruent with those reported using conventional modalities, with the majority of studies (36/44, 82%) that reported on pain scores demonstrating this relationship. The weighted summary correlation coefficient of pain score equivalence from our meta-analysis was 0.92 (95% CI 0.88-0.95). Studies on data completeness, patient- or provider-reported ease of use, and efficiency generally indicated that electronic data capture methods were equivalent or superior to conventional methods. Most (19/23, 83%) studies that directly surveyed patients reported that the electronic format was the preferred data collection method. CONCLUSIONS: Electronic pain-related data capture methods are comparable with conventional methods in terms of score equivalence, data completeness, ease, efficiency, and acceptability and, if the appropriate psychometric evaluations are in place, are a feasible means to collect pain data in clinical and research settings.


Assuntos
Coleta de Dados/métodos , Eletrônica/métodos , Dor/diagnóstico , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
10.
Can Oncol Nurs J ; 30(3): 193-199, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33118979

RESUMO

A quality improvement project was conducted to determine the quality of telephone nursing for patients with cancer symptoms. Eligible patients were ones who telephoned the nurse about cancer symptom(s) within four weeks prior to an emergency department (ED) visit not requiring hospital admission. Experienced oncology nurses extracting data indicated appropriateness of ED visits and opportunities for improvement. The Symptom Management Analysis Tool was used to analyze nurse documentation. For 77 patients, 87% ED visits occurred within four days of calls about symptoms (e.g., pain, breathlessness, constipation, diarrhea, nausea/vomiting) and 91% could have been managed by more complete telephone assessment and/or an urgent clinic visit. Quality of nurse documentation revealed few patients were assessed adequately (38%), received any symptom-specific medication review (49%), or were guided in self-care strategies (17%). There was low-quality telephone symptom management by nurses and a need for alternative options for patients requiring urgent face-to-face assessments. Our findings highlight a gap in use of guidelines for informing telephone symptom management.

11.
Pediatr Blood Cancer ; 65(9): e27242, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29893482

RESUMO

BACKGROUND: Subcutaneous port needle insertions are painful and distressing for children with cancer. The interactive MEDiPORT robot has been programmed to implement psychological strategies to decrease pain and distress during this procedure. This study assessed the feasibility of a future MEDiPORT trial. The secondary aim was to determine the preliminary effectiveness of MEDiPORT in reducing child pain and distress during subcutaneous port accesses. METHODS: This 5-month pilot randomized controlled trial used a web-based service to randomize 4- to 9-year-olds with cancer to the MEDiPORT cognitive-behavioral arm (robot using evidence-based cognitive-behavioral interventions) or active distraction arm (robot dancing and singing) while a nurse conducted a needle insertion. We assessed accrual and retention; technical difficulties; outcome measure completion by children, parents, and nurses; time taken to complete the study and clinical procedure; and child-, parent-, and nurse-rated acceptability. Descriptive analyses, with exploratory inferential testing of child pain and distress data, were used to address study aims. RESULTS: Forty children were randomized across study arms. Most (85%) eligible children participated and no children withdrew. Technical difficulties were more common in the cognitive-behavioral arm. Completion times for the study and needle insertion were acceptable and >96% of outcome measure items were completed. Overall, MEDiPORT and the study were acceptable to participants. There was no difference in pain between arms, but distress during the procedure was less pronounced in the active distraction arm. CONCLUSION: The MEDiPORT study appears feasible to implement as an adequately-powered effectiveness-assessing trial following modifications to the intervention and study protocol. ClinicalTrials.gov NCT02611739.


Assuntos
Terapia Cognitivo-Comportamental/instrumentação , Manequins , Dor Processual/prevenção & controle , Punções/psicologia , Robótica , Estresse Psicológico/prevenção & controle , Atenção , Criança , Pré-Escolar , Medo , Feminino , Humanos , Infusões Subcutâneas/instrumentação , Infusões Subcutâneas/métodos , Infusões Subcutâneas/psicologia , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Enfermeiras e Enfermeiros/psicologia , Medição da Dor , Pais/psicologia , Projetos Piloto
12.
Pediatr Blood Cancer ; 64(10)2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28423223

RESUMO

BACKGROUND: Pain in adolescents with cancer (12-18 years) is common and negatively impacts health-related quality of life (HRQL). The Pain Squad+ smartphone app, which provides adolescents with real-time pain self-management support, was developed to address this issue. This study evaluated the implementation of the app to inform a future randomized controlled trial (RCT) and obtain treatment effect estimates for pain intensity, pain interference, HRQL, and self-efficacy. PROCEDURE: A one-group baseline/poststudy design with 40 adolescents recruited from two pediatric tertiary care centers was used. Baseline questionnaires were completed and adolescents used the app at least twice daily for 28 days, receiving algorithm-informed self-management advice depending on their reported pain. A nurse received alerts in response to sustained pain and contacted adolescents to assist in pain care. Poststudy questionnaires were completed. Descriptive analyses, with exploratory inferential testing conducted on health outcome data, were used to address study aims. RESULTS: Most (40/52; 77%) eligible adolescents participated. Two participants withdrew participation. Intervention fidelity was impacted by technical difficulties (occurring for 15% of participants) and a prolonged time for nurse contact in the event of sustained pain. Adherence to pain reporting was 68.8 ± 38.1%. Outcome measure completion rates were high and the intervention was acceptable to participants. Trends in improvements in pain intensity, pain interference, and HRQL were significant, with effect sizes of 0.23-0.67. CONCLUSIONS: Implementation of Pain Squad+ is feasible and the app appears to improve pain-related outcomes for adolescents with cancer. A multicenter RCT will be undertaken to examine app effectiveness.


Assuntos
Algoritmos , Aplicativos Móveis , Neoplasias , Manejo da Dor , Dor , Autocuidado , Smartphone , Adolescente , Criança , Feminino , Humanos , Masculino , Manejo da Dor/instrumentação , Manejo da Dor/métodos , Projetos Piloto , Autocuidado/instrumentação , Autocuidado/métodos
15.
PLOS Digit Health ; 3(1): e0000181, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38190369

RESUMO

Social media is increasingly used to engage persons with lived experience and healthcare professionals in research, however, there remains sparse guidance on how to effectively use social media to engage these groups in research agenda-setting. Here we report our process and experience utilizing a social media campaign to engage Canadians within the pediatric cancer community in a research priority-setting exercise. Following the James Lind Alliance method, we launched a priority-setting partnership (PSP) to develop a child with cancer-, survivor-, family member-, and healthcare professional-based Canadian pediatric cancer research agenda. Social media-based strategies were implemented to recruit participants for two PSP surveys, including preparatory activities, developing a website, launching graphics and advertisements, and engaging internal and external networks. Descriptive statistics of our data and analytics provided by the platforms are used presently to report our process. The framework we implemented involved preparing for social media use, identifying a target audience, developing campaign content, conducting the campaign, refining the campaign as needed, and evaluating its success. Our process resulted in a substantial social media-based reach, good survey completion rates, and a successfully developed pediatric cancer community-specified research agenda. Social media may represent a useful approach to engage persons with lived experience and healthcare professionals in research agenda development. Based on our experience, we present strategies to increase social media campaign engagement that may be useful to those seeking to conduct health research priority-setting exercises.

16.
PLoS One ; 19(3): e0294393, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38446765

RESUMO

OBJECTIVE: Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology. METHODS: An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids. RESULTS: Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes. CONCLUSIONS: The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.


Assuntos
Oncologia , Neoplasias , Criança , Humanos , Reprodutibilidade dos Testes , Diretivas Antecipadas , Consenso , Neoplasias/diagnóstico , Neoplasias/terapia
17.
Pain ; 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38981063

RESUMO

ABSTRACT: Although survivors of childhood cancer are at an increased risk, little is known about the prevalence of chronic pain, associated interference, and daily pain experiences. Survivors (N = 233; mean age = 40.8 years, range 22-64 years; mean time since diagnosis = 32.7 years) from the Childhood Cancer Survivor Study completed pain and psychosocial measures. Survivors with chronic pain completed 2-week, daily measures assessing pain and psychological symptoms using mHealth-based ecological momentary assessment. Multivariable-modified Poisson and linear regression models estimated prevalence ratio estimates (PR) and mean effects with 95% confidence intervals (CI) for associations of key risk factors with chronic pain and pain interference, respectively. Multilevel mixed models examined outcomes of daily pain and pain interference with prior day symptoms. Ninety-six survivors (41%) reported chronic pain, of whom 23 (24%) had severe interference. Chronic pain was associated with previous intravenous methotrexate treatment (PR = 1.6, 95% CI 1.1-2.3), respiratory (PR = 1.8, 95% CI 1.2-2.5), gastrointestinal (PR = 1.6, 95% CI 11.0-2.3), and neurological (PR = 1.5, 95% CI 1.0-2.1) chronic health conditions, unemployment (PR = 1.4, 95% CI 1.0-1.9) and clinically significant depression and anxiety (PR = 2.9, 95% CI 2.0-4.2), as well as a diagnosis of childhood Ewing sarcoma or osteosarcoma (PR = 1.9, 95% CI 1.0-3.5). Higher pain interference was associated with cardiovascular and neurological conditions, unemployment and clinical levels of depression and/or anxiety, and fear of cancer recurrence. For male, but not female survivors, low sleep quality, elevated anxiety, and elevated depression predicted high pain intensity and interference the next day. A substantial proportion of childhood cancer survivors experience chronic pain and significant associated interference. Chronic pain should be routinely evaluated, and interventions are needed.

18.
Curr Oncol ; 31(5): 2874-2880, 2024 05 17.
Artigo em Inglês | MEDLINE | ID: mdl-38785500

RESUMO

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.


Assuntos
Neoplasias , Humanos , Adolescente , Canadá , Adulto Jovem , Adulto , Pesquisa , Feminino , Pesquisa Biomédica , Prioridades em Saúde , Masculino
19.
J Med Internet Res ; 15(3): e51, 2013 Mar 08.
Artigo em Inglês | MEDLINE | ID: mdl-23475457

RESUMO

BACKGROUND: Pain is one of the most common and distressing symptoms reported by adolescents with cancer. Despite advancements in pain assessment and management research, pain due to cancer and/or its treatments continues to be poorly managed. Our research group has developed a native iPhone application (app) called Pain Squad to tackle the problem of poorly managed pain in the adolescent with cancer group. The app functions as an electronic pain diary and is unique in its ability to collect data on pain intensity, duration, location, and the impact pain has on an adolescent's life (ie, relationships, school work, sleep, mood). It also evaluates medications and other physical and psychological pain management strategies used. Users are prompted twice daily at configurable times to complete 20 questions characterizing their pain and the app transmits results to a database for aggregate reporting through a Web interface. Each diary entry represents a pain case filed by an adolescent with cancer and a reward system (ie, moving up through law-enforcement team ranks, built-in videotaped acknowledgements from fictitious officers) encourages consistent use of the diary. OBJECTIVE: Our objective was to design, develop, and test the usability, feasibility, compliance, and satisfaction of a game-based smartphone pain assessment tool for adolescents with cancer. METHODS: We used both low- and high-fidelity qualitative usability testing with qualitative semi-structured, audio-taped interviews and iterative cycles to design and refine the iPhone based Pain Squad app. Qualitative thematic analysis of interviews using constant comparative methodology captured emergent themes related to app usability. Content validity was assessed using question importance-rating surveys completed by participants. Compliance and satisfaction data were collected following a 2-week feasibility trial where users were alarmed to record their pain twice daily on the app. RESULTS: Thematic analysis of usability interviews showed the app to be appealing overall to adolescents. Analyses of both low- and high-fidelity testing resulted in minor revisions to the app to refine the theme and improve its usability. Adolescents resoundingly endorsed the game-based nature of the app and its virtual reward system. The importance of app pain diary questions was established by content validity analysis. Compliance with the app, assessed during feasibility testing, was high (mean 81%, SD 22%) and adolescents from this phase of the study found the app likeable, easy to use, and not bothersome to complete. CONCLUSIONS: A multifaceted usability approach demonstrated how the Pain Squad app could be made more appealing to children and adolescents with cancer. The game-based nature and built-in reward system of the app was appealing to adolescents and may have resulted in the high compliance rates and satisfaction ratings observed during clinical feasibility testing.


Assuntos
Telefone Celular , Microcomputadores , Neoplasias/complicações , Medição da Dor/métodos , Dor/etiologia , Adolescente , Estudos de Viabilidade , Feminino , Humanos , Masculino , Dor/fisiopatologia , Cooperação do Paciente , Satisfação do Paciente
20.
Children (Basel) ; 10(9)2023 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-37761461

RESUMO

BACKGROUND: This study aimed to test the inter-rater reliability, construct validity, and feasibility of the modified "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires in pediatric oncology; Methods: Parent-child dyads were invited to complete self- and proxy-report-modified WHAT, Pediatric Quality of Life Inventory, demographics, a diary of the child's recent use of CHA, and a questionnaire assessing the aspects of feasibility. Parents were asked to complete a satisfaction of their children's use of the CHA survey; Results: Twenty-four dyads completed the study. The mean weighted kappa showed strong inter-rater reliability (k = 0.77, SE = 0.056), and strong agreements between the modified WHAT and the diary (self-report [k = 0.806, SE = 0.046] and proxy-report [k = 0.894, SE = 0.057]). Significant relationships were found only between recent and non-recent CHA users in relation to the easy access to CHA (self-report [p = 0.02], proxy-report [p < 0.001]). The mean scores of the feasibility scale (out of 7.0) for the self- and proxy-report were 5.64 (SD = 0.23) and 5.81 (SD = 0.22), respectively, indicating the feasibility of the modified WHAT; Conclusions: The findings provide initial evidence of the reliability and validity of the modified WHAT and their feasibility. Further research is needed to test the theoretical relationships and further explore the validity and reliability of the modified WHAT.

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