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1.
PLOS Digit Health ; 3(1): e0000181, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38190369

ABSTRACT

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.

2.
PLOS Digit Health ; 2(11): e0000169, 2023 Nov.
Article in English | MEDLINE | ID: mdl-38019890

ABSTRACT

Pain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home. Digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children's parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured, co-design interviews. We conducted interviews structured around technology acceptance and family caregiving theories until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child's pain. Overall, the app was valued as a means to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care. Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges to app use included the workload burden it may place on parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.

3.
Nurs Educ Perspect ; 2023 May 29.
Article in English | MEDLINE | ID: mdl-37253190

ABSTRACT

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.
BMJ Open ; 12(11): e065422, 2022 11 04.
Article in English | MEDLINE | ID: mdl-36332954

ABSTRACT

INTRODUCTION: The diagnosis, progression or recurrence of cancer is often highly traumatic for family caregivers (FCs), but systematic assessments of distress and approaches for its prevention and treatment are lacking. Acute leukaemia (AL) is a life-threatening cancer of the blood, which most often presents acutely, requires intensive treatment and is associated with severe physical symptoms. Consequently, traumatic stress may be common in the FCs of patients with AL. We aim to determine the prevalence, severity, longitudinal course and predictors of traumatic stress symptoms in FCs of patients with AL in the first year after diagnosis, and to understand their lived experience of traumatic stress and perceived support needs. METHODS AND ANALYSIS: This two-site longitudinal, observational, mixed methods study will recruit 223 adult FCs of paediatric or adult patients newly diagnosed with AL from two tertiary care centres. Quantitative data will be collected from self-report questionnaires at enrolment, and 1, 3, 6, 9 and 12 months after admission to hospital for initial treatment. Quantitative data will be analysed using descriptive and machine learning approaches and a multilevel modelling (MLM) approach will be used to confirm machine learning findings. Semi-structured qualitative interviews will be conducted at 3, 6 and 12 months and analysed using a grounded theory approach. ETHICS AND DISSEMINATION: This study is funded by the Canadian Institutes of Health Research (CIHR number PJT 173255) and has received ethical approval from the Ontario Cancer Research Ethics Board (CTO Project ID: 2104). The data generated have the potential to inform the development of targeted psychosocial interventions for traumatic stress, which is a public health priority for high-risk populations such as FCs of patients with haematological malignancies. An integrated and end-of-study knowledge translation strategy that involves FCs and other stakeholders will be used to interpret and disseminate study results.


Subject(s)
Leukemia , Neoplasms , Adult , Humans , Child , Caregivers/psychology , Surveys and Questionnaires , Neoplasms/psychology , Leukemia/therapy , Ontario , Observational Studies as Topic
5.
Curr Oncol Rep ; 24(4): 443-450, 2022 04.
Article in English | MEDLINE | ID: mdl-35150393

ABSTRACT

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.


Subject(s)
Neoplasms , Quality of Life , Child , Humans , Neoplasms/drug therapy , Symptom Assessment
6.
JCO Oncol Pract ; 17(6): e827-e839, 2021 06.
Article in English | MEDLINE | ID: mdl-33914620

ABSTRACT

PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.


Subject(s)
Home Care Services , Neoplasms , Caregivers , Child , Communication , Family , Humans , Neoplasms/therapy
7.
Clin J Pain ; 38(3): 189-196, 2021 12 30.
Article in English | MEDLINE | ID: mdl-34974512

ABSTRACT

OBJECTIVES: We aimed to determine the feasibility of virtual reality (VR) distraction for children with cancer undergoing subcutaneous port (SCP) access. We also aimed to estimate preliminary treatment effects of VR compared with an active distraction control (iPad). MATERIALS AND METHODS: A single-site pilot randomized controlled trial comparing VR to iPad distraction was conducted. Eligible children and adolescents were aged 8 to 18 years undergoing treatment for cancer with upcoming SCP needle insertions. Intervention acceptability was evaluated by child, parent, and nurse self-report. Preliminary effectiveness outcomes included child-reported pain intensity, distress, and fear. Preliminary effectiveness was determined using logistic regression models with outcomes compared between groups using preprocedure scores as covariates. RESULTS: Twenty participants (mean age 12 y) were randomized to each group. The most common diagnosis was acute lymphocytic leukemia (n=23, 58%). Most eligible children and adolescents (62%) participated, and 1 withdrew after randomization to the iPad group. Nurses, parents, and children reported the interventions in both groups to be acceptable, with the VR participants reporting significantly higher immersion in the distraction environment (P=0.0318). Although not statistically significant, more VR group participants indicated no pain (65% vs. 45%) and no distress (80% vs. 47%) during the procedure compared with the iPad group. Fear was similar across groups, with ~60% of the sample indicating no fear. DISCUSSION: VR was feasible and acceptable to implement as an intervention during SCP access. Preliminary effectiveness results indicate that VR may reduce distress and distress compared with iPad distraction. These data will inform design of a future full-scale randomized controlled trial.


Subject(s)
Neoplasms , Pain, Procedural , Virtual Reality , Adolescent , Child , Humans , Neoplasms/therapy , Pain Measurement , Pain, Procedural/prevention & control , Pilot Projects
8.
Eur J Cancer ; 131: 53-67, 2020 05.
Article in English | MEDLINE | ID: mdl-32302949

ABSTRACT

BACKGROUND: Children with cancer often undergo long treatment trajectories involving repeated needle procedures that potentially cause pain and distress. As part of a comprehensive effort to develop clinical practice guidelines (CPGs) to address pain prevention and management in children with cancer, we aimed to provide recommendations on the pharmacological and psychological management of procedure-related pain and distress. METHODS: Of the international inter-disciplinary CPG development panel (44 individuals), two working groups including 13 healthcare professionals focused on procedural pain and distress. Grading of Recommendations Assessment, Development and Evaluation methodology was used, including the use of systematic literature reviews to inform recommendations and the use of evidence to decision frameworks. At an in-person meeting in February 2018, the guideline panel discussed these frameworks and formulated recommendations which were then discussed with a patient-parent panel consisting of 4 survivors and 5 parents. RESULTS: The systematic reviews led to the inclusion of 48 randomised controlled trials (total number of participants = 2271). Quality of evidence supporting the recommendations ranged from very low to moderate. Strong recommendations were made for the use of topical anesthetics in all needle procedures, for offering deep sedation (DS)/general anesthesia (GA) to all children undergoing lumbar puncture, for the use of DS/ GA in major procedures in children of all ages, for the use of hypnosis in all needle procedures and for the use of active distraction in all needle procedures. CONCLUSION: In this CPG, an evidence-based approach to manage procedure-related pain and distress in children with cancer is presented. As children with cancer often undergo repeated needle procedures during treatment, prevention and alleviation of procedure-related pain and distress is of the utmost importance to increase quality of life in these children and their families.


Subject(s)
Antineoplastic Agents/administration & dosage , Needles/adverse effects , Neoplasms/drug therapy , Pain, Procedural/prevention & control , Stress, Psychological/prevention & control , Age Factors , Child , Evidence-Based Medicine/methods , Evidence-Based Medicine/standards , Humans , Injections/adverse effects , Injections/psychology , Medical Oncology/methods , Medical Oncology/standards , Neoplasms/psychology , Pain, Procedural/etiology , Pain, Procedural/psychology , Quality of Life , Randomized Controlled Trials as Topic , Stress, Psychological/etiology
9.
J Med Internet Res ; 22(6): e16480, 2020 06 16.
Article in English | MEDLINE | ID: mdl-32348259

ABSTRACT

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.


Subject(s)
Data Collection/methods , Electronics/methods , Pain/diagnosis , Adult , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , Young Adult
10.
Can J Pain ; 3(2): 16-25, 2019.
Article in English | MEDLINE | ID: mdl-35005415

ABSTRACT

Background: Electronic data collection is increasingly available as a means to collect pain-related clinical trial data; however, effectiveness and costs relative to traditional data collection are uncertain. Aims: The aim of this study was to evaluate data quality, protocol adherence, satisfaction, and resource requirements of electronic data collection (i.e., Internet-based electronic submission) compared to traditional data collection methods (i.e., paper-based diaries and telephone interviews) in a perioperative factorial randomized controlled trial. Methods: This study was an open-label two-arm parallel randomized controlled trial. Women (18-75 years) undergoing breast cancer surgery were allocated to either electronic or traditional data collection and completed pain-related questionnaires at baseline, postoperative period, and 3-month follow-up (NCT02240199). Results: We acquired outcome data at all time points from 78 randomized patients, 38 in the electronic group and 40 in the traditional group. The number of data queries (e.g., erroneously entered data) per patient was higher in the electronic data group (4.92 [SD = 4.67] vs. 1.88 [SD = 1.51]; P < 0.001). No between-group differences were observed for compliance with medications, data completeness, loss to follow-up, or patient or research assistant satisfaction. More research assistant time per patient was spent collecting data in the traditional group (42.6 min [SD = 12.8] vs. 9.92 min [SD = 7.6]; P < 0.001); however, costs per patient were higher in the electronic group ($176.85 [SD = 2.90] vs. $16.33 [SD = 4.90]; P < 0.001). Conclusion: Electronic data collection is feasible for perioperative pain clinical trials. Additional trials, including different surgical populations, are needed to confirm our findings and optimize use of electronic data capture methods.


Contexte: La collecte électronique de données est de plus en plus disponible en tant que moyen de recueillir les données dans le cadre d'essais cliniques liés à la douleur; toutefois, l'efficacité et le coût de cette méthode, comparativement à la collecte de données traditionnelle, sont incertains.But: Évaluer la qualité des données, le respect du protocole, la satisfaction et les ressources requises dans le cadre de la collecte électronique de données (i.e. la transmission électronique par Internet) comparativement aux méthodes de collecte de données traditionnelles (c.-à.-d les cahiers papier et les entrevues téléphoniques) dans un essai randomisé contrôllé factoriel périopératoire.Méthodes: Cette étude était un essai contrôlé randomisé ouvert parallèle à deux volets. Des femmes (de 18 à 75 ans) subissant une chirurgie pour traiter un cancer du sein ont été réparties en deux groupes, soit celui de la collecte életronique de données et celui de la collecte traditionnelle de données. Elles ont ensuite répondu à des questionnaires liés à la douleur au départ, pendant la période post-opératoire et au bout de trois mois (NCT02240199).Résutats: Nous avons receuilli les données de 78 patientes randomisées à chaque point dans le temps : 38 patientes dans le groupe électronique et 40 patientes dans le groupe traditionnel. Le nombre de questions relatives aux données (ex.: données saisies de manière erronée) par patiente était plus élevé dans le groupe de données électroniques (4,92, É.-T. 4,67 comparativement à 1,88, É.-T. 1,51; p < 0,001). Aucune différence n'a été observée entre les groupes en ce qui concerne l'observance du traitement médicamenteux, l'exhaustivité des données, le nombre de patientes perdues de vue et la satisfaction des patientes ou des assistantes de recherche. Les assistants de recherche ont passé plus de temps par patiente pour recueillir les données dans le groupe traditionnel (42,6 minutes É.-T. 12,8 comparativement à 9,92 minutes É.-T. 76; p < 0,001); toutefois, le coût par patiente était plus élevé dans le groupe électronique (176,85 $ É.-T. 2,90 comparativement à 16,33 $ É.-T. 4,90; p < 0,001).Conclusion: La collecte électronique de données est réalisable dans le cadre d'essais cliniques portant sur la douleur périopératoire. Des essais supplémentaires, y compris auprès de différentes populations de patients chirurgicaux, sont nécessaires pour confirmer nos résultats et optimiser l'utilisation de méthodes éectroniques de saisie de données.

11.
Oncol Nurs Forum ; 45(4): 527-544, 2018 07 02.
Article in English | MEDLINE | ID: mdl-29947357

ABSTRACT

PROBLEM IDENTIFICATION: Improvements in pediatric cancer survival have increased interest in the experiences of children undergoing treatment; however, no review of the qualitative literature describing these experiences has been conducted. LITERATURE SEARCH: Databases were searched from January 2000 to January 2016 for qualitative studies describing the experience of children with cancer aged 18 years or younger. DATA EVALUATION: Two reviewers assessed abstracts for relevance and rated reporting comprehensiveness. Participant quotations and descriptions of participants' comments and behaviors were coded. Coded data were pooled to provide a thematic synthesis. SYNTHESIS: 51 studies were included. Five themes were identified. IMPLICATIONS FOR RESEARCH: Results provide data related to the experience of children with cancer that can inform practice changes and research activities aimed at enhancing quality of life.


Subject(s)
Cancer Survivors/psychology , Neoplasms/psychology , Quality of Life/psychology , Adolescent , Child , Child, Preschool , Female , Humans , Male , Qualitative Research
12.
Pediatr Blood Cancer ; 65(9): e27242, 2018 09.
Article in English | MEDLINE | ID: mdl-29893482

ABSTRACT

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.


Subject(s)
Cognitive Behavioral Therapy/instrumentation , Manikins , Pain, Procedural/prevention & control , Punctures/psychology , Robotics , Stress, Psychological/prevention & control , Attention , Child , Child, Preschool , Fear , Female , Humans , Infusions, Subcutaneous/instrumentation , Infusions, Subcutaneous/methods , Infusions, Subcutaneous/psychology , Male , Neoplasms/psychology , Neoplasms/therapy , Nurses/psychology , Pain Measurement , Parents/psychology , Pilot Projects
13.
JMIR Mhealth Uhealth ; 6(4): e80, 2018 Apr 06.
Article in English | MEDLINE | ID: mdl-29625951

ABSTRACT

BACKGROUND: Pain in adolescents with cancer is common and negatively impacts health-related quality of life. The Pain Squad+ smartphone app, capable of providing adolescents with real-time pain management support, was developed to enhance pain management using a phased approach (ie, systematic review, consensus conference and vetting, iterative usability testing cycles). A 28-day Pain Squad+ pilot was conducted with 40 adolescents with cancer to evaluate the feasibility of implementing the app in a future clinical trial and to obtain estimates of treatment effect. OBJECTIVE: The objective of our nested qualitative study was to elucidate the perceptions of adolescents with cancer to determine the acceptability and perceived helpfulness of Pain Squad+, suggestions for app improvement, and satisfaction with the pilot study protocol. METHODS: Post pilot study participation, telephone-based, semistructured, and audio-recorded exit interviews were conducted with 20 adolescents with cancer (12-18 years). All interviews were transcribed and independently coded by 2 study team members. Content analysis was conducted to identify data categories and overarching themes. RESULTS: Five major themes comprising multiple categories and codes emerged. These themes focused on the acceptability of the intervention, acceptability of the study, the perceived active ingredients of the intervention, the suitability of the intervention to adolescents' lives, and recommendations for intervention improvement. CONCLUSIONS: Overall, Pain Squad+ and the pilot study protocol were acceptable to adolescents with cancer. Suggestions for intervention and study improvements will be incorporated into the design of a future randomized clinical trial (RCT) aimed at assessing the effectiveness of Pain Squad+ on adolescents with cancer health outcomes.

14.
Clin J Pain ; 34(3): 198-206, 2018 03.
Article in English | MEDLINE | ID: mdl-28678061

ABSTRACT

OBJECTIVES: Pain is a common and distressing symptom of pediatric cancer, as reported by both children and their parents. Increasingly, children with cancer are cared for as outpatients, yet little is known about how parents manage their cancer-related pain. The aim of the current study was to examine pain prevalence and characteristics, and the pharmacological, physical, and psychological pain management strategies used by parents to manage their child's cancer pain. MATERIALS AND METHODS: In total, 230 parents and caregivers (89% mothers) of children (mean age=8.93 y, SD=4.50) with cancer currently in treatment or who are survivors completed an online survey about their child's pain in the preceding month. RESULTS: Results indicated that children with cancer who were on active treatment and who were posttreatment experienced clinically significant levels of pain. Parents reported using more physical and psychological strategies than pharmacological strategies to manage their child's pain. The most frequently used physical/psychological strategy was distraction and acetaminophen was the most frequently administered pain medication. Parents' confidence in managing their child's pain was inversely associated with both how much pain they perceived their child had, and also whether they had given any pain medication. DISCUSSION: The results of this study suggest that despite parents' use of pain management strategies, management of cancer-related pain continues to be a problem for children during treatment and into survivorship.


Subject(s)
Neoplasms/epidemiology , Pain/epidemiology , Acetaminophen/therapeutic use , Adult , Analgesics, Non-Narcotic/therapeutic use , Caregivers , Child , Female , Humans , Male , Middle Aged , Neoplasms/therapy , Pain Management , Pain Perception , Parents , Prevalence , Young Adult
15.
J Pediatr Oncol Nurs ; 34(4): 283-294, 2017.
Article in English | MEDLINE | ID: mdl-28376666

ABSTRACT

PURPOSE: A user-centered design approach was used to refine the mHealth Pain Squad+ real-time pain self-management app for adolescents with cancer for its usability (defined as being easy to use, easy to understand, efficient to complete, and acceptable). METHOD: Three iterative usability testing cycles involving adolescent observation and interview were used to achieve this objective. During each cycle, adolescents used the app while "thinking aloud" about issues encountered. Observed difficulties and errors were recorded and a semistructured interview about the experience was conducted. Using a qualitative conventional content analysis approach, themes related to app usability were identified. RESULTS: Participants required an average of 4.3 minutes to complete the pain assessment component of Pain Squad+. Overall, the app was acceptable. Problematic issues related to software malfunction, interface design flaws, and confusing text. Software revisions were made to address each issue. CONCLUSION: The multifaceted usability approach used provided insight into how a real-time app can be made acceptable to adolescents with cancer and succeeded in developing a Pain Squad+ app that is fit for future effectiveness testing.


Subject(s)
Adolescent Behavior , Neoplasms/psychology , Pain Measurement/instrumentation , Pain, Intractable/prevention & control , Self Care , Smartphone , User-Computer Interface , Adolescent , Child , Humans , Neoplasms/nursing , Pain Measurement/methods , Pain, Intractable/nursing , Pediatric Nursing
16.
Pediatr Blood Cancer ; 64(10)2017 Oct.
Article in English | MEDLINE | ID: mdl-28423223

ABSTRACT

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.


Subject(s)
Algorithms , Mobile Applications , Neoplasms , Pain Management , Pain , Self Care , Smartphone , Adolescent , Child , Female , Humans , Male , Pain Management/instrumentation , Pain Management/methods , Pilot Projects , Self Care/instrumentation , Self Care/methods
17.
Pain ; 156(12): 2607-2615, 2015 Dec.
Article in English | MEDLINE | ID: mdl-26580680

ABSTRACT

We evaluated the construct validity (including responsiveness), reliability, and feasibility of the Pain Squad multidimensional smartphone-based pain assessment application (app) in children and adolescents with cancer, using 2 descriptive studies with repeated measures. Participants (8-18 years) undergoing cancer treatment were drawn from 4 pediatric cancer centers. In study 1, 92 participants self-reported their level of pain twice daily for 2 weeks using the Pain Squad app to assess app construct validity and reliability. In study 2, 14 participants recorded their level of pain twice a day for 1 week before and 2 weeks after cancer-related surgery to determine app responsiveness. Participants in both studies completed multiple measures to determine the construct validity and feasibility of the Pain Squad app. Correlations between average weekly pain ratings on the Pain Squad app and recalled least, average, and worst weekly pain were moderate to high (0.43-0.68). Correlations with health-related quality of life and pain coping (measured with PedsQL Inventory 4.0, PedsQL Cancer Module, and Pain Coping Questionnaire) were -0.46 to 0.29. The app showed excellent internal consistency (α = 0.96). Pain ratings changed because of surgery with large effect sizes between baseline and the first week postsurgery (>0.85) and small effect sizes between baseline and the second week postsurgery (0.13-0.32). These findings provide evidence of the construct validity, reliability, and feasibility of the Pain Squad app in children and adolescents with cancer. Use of real-time data capture approaches should be considered in future studies of childhood cancer pain. A video accompanying this abstract is available online as Supplemental Digital Content at http://links.lww.com/PAIN/A169.


Subject(s)
Mobile Applications , Neoplasms/complications , Pain Measurement/instrumentation , Pain/diagnosis , Smartphone , Adolescent , Child , Feasibility Studies , Female , Humans , Male , Pain/etiology , Prospective Studies , Reproducibility of Results , Self Report
18.
Oncol Nurs Forum ; 42(6): E339-57, 2015 Nov.
Article in English | MEDLINE | ID: mdl-26488841

ABSTRACT

PURPOSE/OBJECTIVES: To identify and appraise current evidence related to the effectiveness of psychological and physical (nonpharmacologic) pain management modalities for children and young adults with cancer
. DATA SOURCES: Electronic searches in MEDLINE, EMBASE, CINAHL, PsycINFO, and Web of Science (from database inception to June 2013) for clinical trials. DATA SYNTHESIS: A total of 32 unique studies were identified. Substantial heterogeneity existed across identified studies, precluding meta-analysis. Therefore, a narrative review of included studies is presented. Studies featured psychological and/or physical pain interventions for children and young adults (N = 1,171) aged 1-21 years with a variety of cancer diagnoses. Interventions included aromatherapy, art therapy, distraction, hypnosis, physical activity, physical positioning, touch therapy, and multimodal cognitive-behavior therapy. Twenty-two studies (69%) reported success in preventing or reducing pain intensity. The level of evidence and methodologic quality of studies were generally low
. CONCLUSIONS: Current nonpharmacologic pain interventions for pediatric and young adult patients with cancer are diverse. Several modalities significantly decreased pain intensity, suggesting that these strategies may be effective methods of pain treatment, particularly in the case of painful medical procedures. Future well-designed, multicenter, randomized, controlled trials are needed to further discern treatment effects on pain and other health outcomes in this population and to compare the relative effectiveness of different modalities. IMPLICATIONS FOR NURSING: Nurses play a key role in pain assessment and management in pediatric and young adult patients with cancer. The studies included in this review constitute the beginnings of an evidence base that supports the need to implement psychological and physical interventions to improve pain outcomes in pediatric and young adult patients with cancer.


Subject(s)
Neoplasms/complications , Pain Management/methods , Pain/etiology , Adolescent , Child , Child, Preschool , Humans , Infant , Mental Disorders , Psychotherapy , Young Adult
19.
J Adolesc Young Adult Oncol ; 4(2): 84-90, 2015 Jun.
Article in English | MEDLINE | ID: mdl-26812556

ABSTRACT

PURPOSE: We sought to gain insight into perspectives around core domains of adolescent development--romantic relationships, sexual relationships, and fertility--from the vantage point of Canadian adolescents and parents during and after cancer treatment. METHODS: Twenty adolescents (12-17 years old at interview) and 20 parents (who may or may not have had an adolescent interviewed) participated in this study. Using a semistructured guide, adolescents and parents were interviewed separately. All interviews were audio-recorded and transcribed. Transcribed interview data were independently coded according to the study objectives by two trained analysts. Codes were organized into categories that reflected emerging themes. Discrepancies in coding were resolved through discussion with the lead investigator. RESULTS: Qualitative analysis revealed main themes for adolescents and parents related to: (1) romantic relationships (opinions on the importance of dating in the context of cancer, expectations that cancer will impact future relationships, dating as a source of moral support, and limited opportunities to engage with partners); (2) sexual relationships (thoughts related to the impact of cancer on future sexual relationships); (3) fertility (initiating treatment as a primary concern and fear of infertility and perceived consequences); and (4) recommendations for care (access to knowledge and support through adolescent-friendly and accessible means). CONCLUSION: Findings from this study highlight cancer-specific relationship and fertility issues faced by adolescents and provide important direction to the development of interventions that may ultimately improve the psychosocial health of adolescents during and after cancer treatment.


Subject(s)
Adolescent Behavior/psychology , Fertility , Neoplasms/psychology , Sexual Behavior/psychology , Sexual Partners/psychology , Adolescent , Attitude to Health , Child , Courtship/psychology , Female , Fertility Preservation/psychology , Humans , Interpersonal Relations , Interviews as Topic , Male , Neoplasms/rehabilitation , Neoplasms/therapy , Ontario , Parents/psychology , Patient Education as Topic/methods , Qualitative Research , Social Support
20.
Clin J Pain ; 31(6): 557-63, 2015 Jun.
Article in English | MEDLINE | ID: mdl-25370138

ABSTRACT

OBJECTIVES: There are a growing number of pain self-management applications (apps) available for users to download on personal smartphones. The purpose of this study was to critically appraise the content and self-management functionality of currently available pain apps. METHODS: An electronic search was conducted between May and June 2014 of the official stores for the 4 major operating systems. Two authors independently identified patient-focused apps with a stated goal of pain management. Discrepancies regarding selection were resolved through discussion with a third party. Metadata from all included apps were abstracted into a standard form. The content and functionality of each app as it pertained to pain self-management was rated. RESULTS: A total of 279 apps met the inclusion criteria. Pain self-care skill support was the most common self-management function (77.4%). Apps also purported providing patients with the ability to engage in pain education (45.9%), self-monitoring (19%), social support (3.6%), and goal-setting (0.72%). No apps were comprehensive in terms of pain self-management, with the majority of apps including only a single self-management function (58.5%). In addition, only 8.2% of apps included a health care professional in their development, not a single app provided a theoretical rationale, and only 1 app underwent scientific evaluation. DISCUSSION: Currently available pain self-management apps for patients are simplistic, lack the involvement of health care professionals in their development, and have not been rigorously tested for effectiveness on pain-related health outcomes. There is a need to develop and test theoretically and evidence-based apps to better support patients with accessible pain care self-management.


Subject(s)
Mobile Applications , Pain Management/instrumentation , Pain Management/methods , Smartphone , Humans , Self Care/instrumentation , Self Care/methods
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