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PURPOSE: While care pathways based upon clinical practice guidelines (CPGs) are important, little is known about optimal approaches to development and adaptation in pediatric oncology. Objectives were to develop care pathway templates for pediatric cancer supportive care that are based upon CPGs and to adapt an infection management care pathway for use at a single institution. METHODS: Study phases were as follows: (1) creation of care pathway templates across multiple supportive care topics; (2) refinement of the infection management care pathway template by interviewing pediatric oncology clinicians at a single institution; and (3) adaptation of the infection management care pathway template for use at a different institution. RESULTS: Informed by seven CPGs, an initial iteration of the infection management care pathway template was created. This template was then refined based upon 20 interviews with pediatric oncology clinicians. Adaptation of the infection management care pathway template for use at a different institution required many changes to improve its clinical usability. Specificity and additional information not considered by the source CPGs were incorporated. CONCLUSION: We developed a process to create care pathway templates across multiple supportive care topics in pediatric oncology and to refine and adapt the infection management care pathway. While we found that the process was feasible, we also identified the need to substantially modify the care pathway during the adaptation process to consider scenarios not addressed by the source CPGs. Future work should measure implementation success.
Subject(s)
Critical Pathways , Neoplasms , Child , Humans , Medical Oncology , Neoplasms/therapyABSTRACT
PURPOSE: To qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. METHODS: We enrolled child and parent dyads, who understood English and where children (4-18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting. RESULTS: We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion. CONCLUSION: We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.
Subject(s)
Family/psychology , Neoplasms/diagnosis , Self Report/statistics & numerical data , Symptom Assessment/methods , Symptom Assessment/statistics & numerical data , Adolescent , Child , Child, Preschool , Communication , Comprehension , Dissent and Disputes , Emotions , Female , Hematopoietic Stem Cell Transplantation/psychology , Humans , Male , Mass Screening , Neoplasms/therapy , Parents/psychology , Proxy , Psychometrics , Transplant Recipients/psychologyABSTRACT
PURPOSE: Change in hunger is a common and bothersome symptom among pediatric patients receiving cancer treatments. Objectives were to describe how children and adolescents receiving cancer treatments experience changes in hunger, factors associated with both increases and decreases in hunger, and coping strategies used by these patients. METHODS: We enrolled children and adolescents 4-18 years of age with cancer or hematopoietic stem cell transplantation (HSCT) recipients who were actively receiving treatment or who had completed therapy. Using a single, qualitative, semi-structured interview, we asked participants about the experience of increases or decreases in hunger, including characteristics of the change and identified coping strategies. RESULTS: There were 50 children enrolled; 25 (50%) were 4-10 years of age and 33 (66%) were boys. Most often, patients associated an increase in hunger with corticosteroid administration, while other treatments, accompanying symptoms, inactivity, and the hospital environment were associated with a decrease in hunger. Many reported that no coping strategies were successful. For those who did report successful strategies to manage an increase in hunger, these included sleep and having food available. Strategies used to manage a decrease in hunger included anti-emetic medications, increased caloric intake, varied food choices, encouragement to eat, scheduling or tracking of meals, and physical activity. CONCLUSIONS: Both increases and decreases in hunger were commonly described. Some coping strategies were reported to be successful. Further research should identify and test interventions to manage changes in hunger in pediatric cancer patients.
Subject(s)
Hematopoietic Stem Cell Transplantation/adverse effects , Hunger/physiology , Neoplasms/therapy , Transplantation Conditioning/adverse effects , Adolescent , Child , Child, Preschool , Female , Humans , MaleABSTRACT
PURPOSE: Pediatric cancer patients experience symptoms that negatively impact quality of life; yoga may be an effective intervention. The primary objective was to determine the feasibility of a 10-week, weekly individualized yoga intervention for children and adolescents receiving outpatient cancer therapy primarily delivered remotely using Skype. Secondary objectives were to describe depression, anxiety, anger, fatigue, quality of life, and symptoms at 5 and 10 weeks after enrollment. METHODS: We included English-speaking patients aged 10 to 18 years receiving outpatient chemotherapy for cancer. Weekly individualized yoga sessions were offered for 10 weeks. Weeks 1, 5, and 10 were in-hospital while the remaining sessions were delivered remotely using Skype. Twice weekly, homework was assigned between each session. The primary outcome was feasibility, defined as 80% of participants completing at least 60% of planned in-hospital or remote yoga sessions. RESULTS: Between March and November 2017, 10 patients were enrolled. Two patients discontinued the study after one and two sessions. Only six participants achieved at least 60% of planned yoga sessions and thus, the study did not meet the a priori defined feasibility threshold. Among all participants, only one homework session was performed. CONCLUSIONS: A 10-week individualized in-person and remotely conducted yoga intervention was not feasible in children receiving cancer treatments because of failure to achieve the desired frequency of yoga sessions in a sufficient number of participants. Future research should identify approaches to improve compliance with remote yoga sessions and home practice. TRIAL REGISTRATION: NCT03318068.
Subject(s)
Anxiety/therapy , Depression/therapy , Fatigue/therapy , Patient Compliance/statistics & numerical data , Quality of Life/psychology , Yoga/psychology , Adolescent , Child , Feasibility Studies , Female , Humans , Male , Meditation , Middle Aged , Neoplasms/therapy , Outpatients/psychology , Pilot ProjectsABSTRACT
PURPOSE: Changes in taste is a common bothersome symptom in children receiving cancer treatments. However, little is known about how pediatric cancer patients experience this symptom. The objective was to describe how children receiving cancer treatments experience taste alterations and the approaches they use to address the issue. METHODS: In this qualitative study, we included English-speaking children 4-18 years of age with cancer or hematopoietic stem cell transplantation recipients who were actively receiving cancer treatment or who had completed therapy. Using a semi-structured questionnaire, we asked questions about the experience of altered taste sensation. We asked about its characteristics, impacts and identified coping strategies. RESULTS: We included 50 children. Children experienced changes in taste in a heterogeneous fashion although commonly described food as tasting "different", "not right" or "funny". While change in food preferences due to taste alterations was common, specific choices varied. Many found changes started with treatment initiation or mid-way through treatment, and some found that symptoms persisted up to 9 months following treatment completion. Actions taken to address taste changes were sucking on candy, brushing teeth and modifying food choices. CONCLUSIONS: The experience of changes in taste was common yet highly variable in its presentation and resultant changes in food preferences. Taste changes did not always resolve soon after treatment completion. Future research should identify ways to manage this symptom in pediatric cancer patients.
Subject(s)
Hematopoietic Stem Cell Transplantation/adverse effects , Quality of Life/psychology , Taste/physiology , Adolescent , Child , Child, Preschool , Female , Humans , MaleABSTRACT
This research examined the sustainability of Canada's At Home/Chez Soi Housing First (HF) programs for homeless persons with mental illness 2 years after the end of the demonstration phase of a large (more than 2000 participants enrolled), five-site, randomized controlled trial. Qualitative interviews were conducted with 142 participants (key informants, HF staff, and persons with lived experience) to understand sustainability outcomes and factors that influenced those outcomes. Also, a self-report HF fidelity measure was completed for nine HF programs that continued after the demonstration project. A cross-site analysis was performed, using the five sites as case studies. The findings revealed that nine of the 12 HF programs (75%) were sustained, and that seven of the nine programs reported a high level of fidelity (achieving an overall score of 3.5 or higher on a 4-point scale). The sites varied in terms of the level of systems integration and expansion of HF that were achieved. Factors that promoted or impeded sustainability were observed at multiple ecological levels: broad contextual (i.e., dissemination of research evidence, the policy context), community (i.e., partnerships, the presence of HF champions), organizational (i.e., leadership, ongoing training, and technical assistance), and individual (i.e., staff turnover, changes, and capacity). The findings are discussed in terms of the implementation science literature and their implications for how evidence-based programs like HF can be sustained.
Subject(s)
Housing , Ill-Housed Persons , Mental Disorders/rehabilitation , Canada , Case Management , Community Mental Health Services , Humans , Information Dissemination , Program Evaluation , Public Policy , Qualitative Research , Randomized Controlled Trials as TopicABSTRACT
The COVID-19 pandemic significantly impacted primary care, but its effect on quality of care is not well understood. We used health administrative data to understand the changes in quality-of-care measures for primary care between October 2018 and April 2022. We examined the following domains: cancer screening, chronic disease (diabetes) management, high-risk prescribing, continuity of care and capacity of primary care services. Colorectal and breast cancer screenings declined after the pandemic and had not returned to baseline by study end. In patients living with diabetes, in-person visits and up-to-date retinopathy screening rates declined after the pandemic declaration and did not return to baseline by study end, while statin prescribing remained stable. High-risk opioid prescribing decreased over time and was not affected by the pandemic. Physician continuity remained stable, though new patient enrollments decreased over the pandemic but returned to baseline by study end. Existing disparities in colorectal cancer screening by income and recent registration widened during the pandemic. In summary, COVID-19 had a variable impact on primary care, with the strongest influence on preventive and chronic disease care that was dependent on in-person visits.
Subject(s)
COVID-19 , Primary Health Care , Humans , COVID-19/epidemiology , Ontario/epidemiology , Longitudinal Studies , Female , Male , Middle Aged , Aged , Pandemics , Adult , SARS-CoV-2 , Quality of Health Care , Early Detection of Cancer , Continuity of Patient Care , Chronic DiseaseABSTRACT
OBJECTIVES: Taste changes are common among paediatric patients receiving cancer treatments although specific descriptions and associations are uncertain. Primary objective was to describe the number of paediatric patients receiving cancer therapies who experienced taste changes, its impact on food intake and enjoyment of eating, and coping strategies. METHODS: This was a cross-sectional study that included English-speaking paediatric patients aged 4-18 years with a diagnosis of cancer or haematopoietic stem cell transplantation recipients receiving active treatment. Using a structured interview, we asked participants about their experience with taste changes, impacts and coping strategies. The respondent was the paediatric patient. RESULTS: We enrolled 108 patients; median age was 11 years (IQR 8-15). The taste changes reported yesterday or today were food tasting bland (34%), bad (31%), different (27%), bitter (25%), extreme (19%), metallic (15%) or sour (12%). Taste changes were associated with decreased food intake (31%) and decreased enjoyment in eating (25%) yesterday or today. The most common coping strategies were eating food they liked (42%), eating strong-tasting food (39%), drinking liquids (35%), brushing teeth (31%) and sucking on candy (25%). Factors significantly associated with food tasting bad were as follows: older age (p=0.003), shorter time since cancer diagnosis (p=0.027), nausea and vomiting (p=0.008) and mucositis (p=0.009). CONCLUSIONS: Among paediatric patients receiving cancer treatments, taste changes were common and were associated with decreased food intake and enjoyment in eating. Common coping strategies were described. Reducing nausea, vomiting and mucositis may improve taste changes.
Subject(s)
Mucositis , Neoplasms , Humans , Child , Taste , Cross-Sectional Studies , Eating , Nausea , Vomiting , Neoplasms/therapyABSTRACT
Background: Mindfulness is our innate capacity to pay full, conscious, and compassionate attention to something in the moment. It is also a skill that can be strengthened by mental practice. More recently, mindfulness-based interventions (MBIs) are identified within clinical practice guidelines as an intervention in the treatment of certain symptoms for children with cancer. However, there is little guidance available on the practice of using MBIs in the pediatric oncology population. The aim of this paper is to provide an overview of mindfulness, highlights symptoms where mindfulness practices may be of benefit, identifies trauma-sensitive considerations, and provides examples of MBIs that may be considered in the context of pediatric oncology. Methods: Collaboration of expert opinion, which included The Mindfulness Project Team, has enabled this collective informative paper. Results: Mindfulness has been recommended to help with the symptom of fatigue in children with cancer. Emotional symptoms such as anxiety, sadness, and anger may also benefit from the use of MBIs. Ideal MBIs for this population may include mindful movement, mindfulness of the senses, mindfulness of breath, mindfulness of emotions, and the body scan. These approaches can easily be adapted according to the age of the child. Many approaches have been administered with minimal training, with very few requiring a facilitator. However, hospitals have started to incorporate mindfulness experts within their care provision. Conclusion: Future research should continue to investigate the use of MBI programs for children with cancer.
Subject(s)
Mindfulness , Neoplasms , Adolescent , Anxiety/therapy , Anxiety Disorders , Child , Emotions , Humans , Neoplasms/therapyABSTRACT
BACKGROUND: Given the costs of machine learning implementation, a systematic approach to prioritizing which models to implement into clinical practice may be valuable. OBJECTIVE: The primary objective was to determine the health care attributes respondents at 2 pediatric institutions rate as important when prioritizing machine learning model implementation. The secondary objective was to describe their perspectives on implementation using a qualitative approach. METHODS: In this mixed methods study, we distributed a survey to health system leaders, physicians, and data scientists at 2 pediatric institutions. We asked respondents to rank the following 5 attributes in terms of implementation usefulness: the clinical problem was common, the clinical problem caused substantial morbidity and mortality, risk stratification led to different actions that could reasonably improve patient outcomes, reducing physician workload, and saving money. Important attributes were those ranked as first or second most important. Individual qualitative interviews were conducted with a subsample of respondents. RESULTS: Among 613 eligible respondents, 275 (44.9%) responded. Qualitative interviews were conducted with 17 respondents. The most common important attributes were risk stratification leading to different actions (205/275, 74.5%) and clinical problem causing substantial morbidity or mortality (177/275, 64.4%). The attributes considered least important were reducing physician workload and saving money. Qualitative interviews consistently prioritized implementations that improved patient outcomes. CONCLUSIONS: Respondents prioritized machine learning model implementation where risk stratification would lead to different actions and clinical problems that caused substantial morbidity and mortality. Implementations that improved patient outcomes were prioritized. These results can help provide a framework for machine learning model implementation.
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INTRODUCTION: We aimed to create a Spanish-language version of the Pediatric Nausea Assessment Tool (PeNAT) and examine its understandability among Spanish-speaking, Hispanic American children. METHODS: Translation: Forward and backward translations of the PeNAT documents were performed and verified by a bilingual panel. Four monolingual, Spanish-speaking dyads (child/parent) and four bilingual dyads piloted the Spanish-language PeNAT documents. Four additional bilingual dyads read both versions and completed the PeNAT using their preferred version. These were reviewed for errors due to misunderstanding. UNDERSTANDABILITY: Children aged 4-18 years about to receive chemotherapy who spoke Spanish at home and were without impairments precluding PeNAT use were eligible. Participants used the Spanish-language PeNAT during a chemotherapy block. Parents gave feedback on the PeNAT documents. Recruitment continued until 10 consecutive participants offered no substantive suggestions for revision. RESULTS: Translation: All child/parent dyads completed the PeNAT without errors attributable to misunderstanding. The Spanish-language PeNAT was preferred by three of four bilingual dyads. Understandability: Ten cancer patients (mean age: 10.6 years) used the Spanish-language PeNAT. All parents felt their child understood the PeNAT; none felt the documents were hard or very hard to use. CONCLUSION: The Spanish-language PeNAT was understood by Spanish-speaking Hispanic American children. Further psychometric testing is warranted.
Subject(s)
Language , Translations , Adolescent , Child , Child, Preschool , Hispanic or Latino , Humans , Nausea , PsychometricsABSTRACT
OBJECTIVES: Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child's physical health, pain or general fatigue and parents' QoL over time among patients with paediatric leukaemia in El Salvador. METHODS: This was a prospective observational cohort study. Children 2-18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time. RESULTS: Of the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child's physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents' QoL (estimate=1.0, 95% CI -0.8 to 2.8). CONCLUSIONS: Among paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.
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OBJECTIVES: Little is known about the impact of coronavirus disease 2019 (COVID-19) on healthcare professional emotional health in pediatric hematology/oncology. Primary objective was to describe anxiety, depression, positive affect, and perceived stress among pediatric hematology/oncology healthcare professionals following a COVID-19 outbreak. Secondary objectives were to compare these outcomes based on contact with a positive person, and to identify risk factors for worse outcomes. MATERIALS AND METHODS: We included 272 healthcare professionals working with pediatric hematology/oncology patients. We determined whether respondents had direct or indirect contact with a COVID-19-positive individual and then measured outcomes using the Patient-Reported Outcomes Measurement Information System (PROMIS) depression, anxiety, and positive affect measures, and the Perceived Stress Scale. RESULTS: Among eligible respondents, 205 agreed to participate (response rate 75%). Sixty-nine (33.7%) had contact with a COVID-19-positive person. PROMIS anxiety, depression, and positive affect scores were similar to the general United States population. Those who had contact with a COVID-19-positive individual did not have significantly different outcomes. In multiple regression, non-physicians had significantly increased anxiety (nurses: p = 0.013), depression (nurses: p = 0.002, pharmacists: p = 0.038, and other profession: p = 0.021), and perceived stress (nurses: p = 0.002 and other profession: p = 0.011) when compared to physicians. CONCLUSIONS: Pediatric hematology/oncology healthcare professionals had similar levels of anxiety, depression, and positive affect as the general population. Contact with a COVID-19-positive individual was not significantly associated with outcomes. Non-physician healthcare professionals had more anxiety, depression, and perceived stress when compared to physicians. These findings may help to develop programs to support healthcare professional resilience.
Subject(s)
COVID-19/epidemiology , COVID-19/psychology , Hematology/organization & administration , Medical Oncology/organization & administration , Occupational Stress , Pediatrics/organization & administration , Anxiety , Child , Depression , Female , Health Personnel/psychology , Humans , Male , Mental Health , Nurses , Pharmacists , Physicians , Regression Analysis , Resilience, Psychological , Risk Factors , Stress, Psychological , Surveys and Questionnaires , Treatment OutcomeABSTRACT
OBJECTIVES: To translate a symptom screening tool developed for paediatric patients receiving cancer therapies called Symptom Screening in Pediatrics Tool (SSPedi) into Argentinian Spanish and to evaluate the understandability and cultural relevance of the translated version of SSPedi among children with cancer and paediatric haematopoietic stem cell transplant (HSCT) recipients. METHODS: We conducted a multiphase, descriptive study to translate SSPedi into Argentinian Spanish. Using two translators, forward and backward translations were performed. The translated version was evaluated by Spanish-speaking paediatric patients 8-18 years of age receiving cancer treatments in two centres in Argentina and El Salvador. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was patient self-reported difficulty with understanding of the SSPedi instructions and each symptom using a 5-point Likert scale. Secondary outcomes were incorrect understanding of the SSPedi instructions, symptoms and response scale determined by cognitive interviews with the patients and rated using a 4-point Likert scale. Cultural relevance was assessed qualitatively. RESULTS: There were 30 children enrolled and included in cognitive interviews; 16 lived in Argentina and 14 lived in El Salvador. The most common types of Spanish spoken were Central American (17, 57%) followed by South American (10, 33%) and Castilian (3, 10%). No changes to Argentinian Spanish SSPedi were required based on the outcomes or qualitative comments. No issues with cultural relevance were identified by any of the respondents. CONCLUSIONS: We translated and finalised Argentinian Spanish SSPedi. Future research will focus on its use to describe bothersome symptoms by Argentinian Spanish-speaking children.
Subject(s)
Neoplasms , Pediatrics , Argentina , Child , Early Detection of Cancer , El Salvador , Humans , Neoplasms/therapy , Psychometrics , Surveys and Questionnaires , Symptom Assessment , TranslatingABSTRACT
The primary objective of this work was to determine the feasibility of a randomized trial of individualized yoga for children receiving intensive chemotherapy and for hematopoietic stem cell transplantation (HSCT) recipients outside of the principal coordinating institution. We evaluated the feasibility of a randomized trial of individualized yoga versus an iPad control program at a site where external yoga instructors were hired and compensated per session. Subjects were children receiving intensive chemotherapy for hematological malignancies and autologous or allogeneic HSCT recipients expected to be hospitalized for 3 weeks. Yoga or iPad control contact occurred daily for 21 days (excluding weekends and holidays); fatigue and quality-of-life outcomes were measured at baseline, day 10, and day 21. Ten eligible subjects were identified; six subjects consented and were enrolled. Three were randomized to the individualized yoga intervention and three to the iPad control program. The median age of participants was 12 (range 8-15) years, and 2 (33%) were boys. Challenges primarily related to the hiring of yoga instructors who were not trained in research methods. We found issues with: (1) logistics of hiring, training, and retaining instructors; (2) communication between teams; (3) fidelity to the protocol and outcome assessments; and (4) ensuring safety. We found that a randomized trial of individualized yoga presented new challenges when relying on externally contracted yoga instructors. Future multicenter studies of yoga should seek to better integrate practitioners within the research team to improve processes, communication, fidelity to the protocol, and safety.
Subject(s)
Hematopoietic Stem Cell Transplantation , Meditation , Neoplasms , Yoga , Adolescent , Child , Fatigue , Humans , MaleABSTRACT
Psychological interventions have shown benefit in reducing symptoms in children and adolescents with cancer. More recently, mindfulness-based interventions (MBIs) have been shown to be a promising approach to symptom intervention in adolescents with chronic illnesses. In this systematic review, we aimed to describe MBIs or focused-breathing interventions that have been used to treat symptoms in children receiving cancer therapy. A systematic review was conducted using MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO from inception to September 2019. We identified relevant articles in which MBIs or focused-breathing interventions were the primary interventions delivered to improve symptoms in children or adolescents with cancer. Six studies met the inclusion criteria. MBIs included controlled breathing and belly breathing. Intervention effects were found to be beneficial with regard to symptoms that included procedural pain, distress, and quality of life. The interventions were generally well accepted and beneficial. All studies suffered limitations because of methodological flaws, including the lack of randomization, and small sample sizes. Despite the small numbers of studies and participants, MBIs delivered to children with cancer may have beneficial effects on certain symptoms. Implications for future research include interventions tailored to the specific symptom burden. Studies must aim to increase sample sizes as well as to include individuals at high risk for severe symptoms.
Subject(s)
Chronic Disease/psychology , Mindfulness , Neoplasms/psychology , Neoplasms/therapy , Quality of Life/psychology , Stress, Psychological/therapy , Symptom Assessment/psychology , Adolescent , Adult , Child , Child, Preschool , Chronic Disease/therapy , Female , Humans , Male , Young AdultABSTRACT
Symptom Screening in Pediatrics Tool (SSPedi) (age 8-18 years) and mini-SSPedi (age 4-7 years) can be used to self-report and proxy-report bothersome symptoms in pediatric patients receiving cancer treatments. There are limitations of sole child self-report or proxy-report. An approach in which children and parents complete symptom reports together may be useful. The aim of our study was to describe discordance between child self-report and parent proxy-report symptom scores, and to determine how these scores compare to an approach in which reporting is performed together (co-SSPedi). Children and parents completed SSPedi or mini-SSPedi separately. Discordant symptoms were shared with respondents and discussed. Next, the dyad completed co-SSPedi together and were asked which approach they preferred. Discordance was evaluated for each symptom and was defined as a difference of at least 2 points on an ordinal scale ranging from 0 (not at all bothered) to 4 (extremely bothered). Of the 48 enrolled dyads (children, median age, 10.8 years; 54.2% male), 41 (85.4%) had discordance in at least one symptom. There was no clear pattern in discordance by age group. When a dyad approach was used, more co-SSPedi scores agreed with the original child self-report scores (59 dyads, 56.2%) compared to original parent proxy-report scores (15 dyads, 14.3%) for discordant symptoms. Forty-three (89.6%) dyads preferred to complete SSPedi together. Future work should evaluate the psychometric properties of co-SSPedi.
Subject(s)
Psychometrics/methods , Adolescent , Child , Child, Preschool , Female , Humans , Male , Mass Screening , Self ReportABSTRACT
OBJECTIVES: Symptom Screening in Pediatrics Tool (SSPedi) is a validated approach to measuring bothersome symptoms for English-speaking and Spanish-speaking children with cancer and paediatric haematopoietic stem cell transplantation (HSCT) recipients. Objectives were to translate SSPedi into French, and among French-speaking children receiving cancer treatments, to evaluate understandability and cultural relevance. METHODS: We conducted a multiphase, descriptive study to translate SSPedi into French. Forward translation was performed by four medical translators. After confirming that back translation was satisfactory, we enrolled French-speaking children with cancer and paediatric HSCT recipients at four centres in France and Canada. PRIMARY AND SECONDARY OUTCOME MEASURES: Understandability was evaluated by children themselves who self-reported degree of difficulty, and by two adjudicators who rated incorrectness. Assessment of cultural relevance was qualitative. Participants were enrolled in cohorts of 10. RESULTS: There were 30 children enrolled. Participants were enrolled from Marseille (n=10, 33%), Ottawa (n=1, 3%), Quebec City (n=11, 37%) and Toronto (n=8, 27%). No child reported that it was hard or very hard to complete French SSPedi in the last cohort of 10 participants. Changes to the instrument itself were not required. After enrolment of 30 respondents, the French translation of SSPedi was considered finalised based on self-reported difficulty with understanding, adjudicated incorrect understanding and cultural relevance. CONCLUSIONS: We translated and finalised SSPedi for use by French-speaking children and adolescents receiving cancer treatments. Future work should begin to use the translated version to conduct research and to facilitate clinical care.
Subject(s)
Comprehension , Culturally Competent Care , Neoplasms/therapy , Symptom Assessment/methods , Translations , Adolescent , Canada , Child , Female , France , Hematopoietic Stem Cell Transplantation , Humans , Male , Mass ScreeningABSTRACT
OBJECTIVES: Symptom screening is important to achieving symptom control. Symptom Screening in Paediatrics Tool (SSPedi) is validated for English-speaking children. Objectives were to translate SSPedi into Spanish, and to evaluate the understandability and cultural relevance of the translated version among Spanish-speaking children with cancer and paediatric haematopoietic stem cell transplant recipients. METHODS: We conducted a multiphase, descriptive study to translate SSPedi into Spanish. The first step was to determine whether one Spanish version would be appropriate for both North America and Argentina. Once this decision was made, forward and backward translations were performed. The translated version was evaluated by Spanish-speaking children 8-18 years of age receiving cancer treatments. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcome was child self-reported difficulty with understanding of the entire instrument and each symptom using a 5-point Likert scale. Secondary outcomes were incorrect understanding of SSPedi items identified by cognitive interviews with the children using a 4-point Likert scale and cultural relevance, which was assessed qualitatively. RESULTS: This report focuses on North American Spanish as a separate version will be required for Argentinian Spanish SSPedi based on different common vocabulary and grammatical structure. There were 20 children from Toronto and San Antonio included in cognitive interviews. The most common types of Spanish spoken were Mexican (13, 65%), Central American (2, 10%) and South American (2, 10%). No child reported that it was hard or very hard to complete Spanish SSPedi. Changes to the instrument itself were not required based on understanding or cultural relevance. CONCLUSIONS: We translated and finalised Spanish SSPedi appropriate for use in North America. Future research will translate and evaluate SSPedi for use in Argentina and other Spanish-speaking countries.
Subject(s)
Neoplasms , Pediatrics , Argentina , Child , Early Detection of Cancer , Humans , Neoplasms/therapy , North America , Psychometrics , Surveys and Questionnaires , Symptom Assessment , TranslatingABSTRACT
OBJECTIVES: This study aimed to identify challenges and facilitators of sustaining a Housing First intervention at the conclusion of a research demonstration project in Toronto. METHODS: This qualitative study included key informant interviews with organizational leaders (N=13) and focus groups with service team members (N=14) and program participants (N=9) of the At Home/Chez Soi Research Demonstration Project. Thematic analysis was used to identify key themes related to sustainability of Housing First beyond the demonstration phase. RESULTS: Factors that helped secure long-term funding support for Housing First included the positive findings of a rigorous evaluation, early stakeholder engagement, and strong local leadership. Reduced funding, poor intersectoral integration, and lack of central oversight threatened fidelity to the evidence-based model and challenged sustainability. CONCLUSIONS: Evidence-based complex interventions such as Housing First require robust intersectoral collaboration and flexible systems for funding and monitoring to ensure continuing model fidelity and responsiveness to changing contexts.