Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL.

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8-12 and 13-18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people's comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

Transition Readiness Assessment Questionnaire: Skill gaps and psychosocial predictors of transition readiness among adolescents and young adults with chronic medical conditions.

BACKGROUND: Transferring from paediatric to adult care can be challenging. Adolescents and young adults (AYAs) with chronic health conditions need to develop a specific set of skills to ensure lifelong medical follow-up due to the chronicity of their condition. The Transition Readiness Assessment Questionnaire-French version (TRAQ-FR) is a 19-item questionnaire measuring such skills. The aims of the study were to (1) describe participant characteristics and (2) identify constructs related to, and predictors of, having learned domain-specific transition readiness skills. METHODS: Participants included 216 AYAs aged 14-20 years (M = 15.93; SD = 1.35; 54.1% male) recruited from five outpatient clinics in a Canadian tertiary hospital. AYAs completed the TRAQ-FR, the Pediatric Quality of Life Inventory 4.0 (PedsQL) and a sociodemographic questionnaire. Descriptive, bivariate and binary logistic regression analyses were conducted. RESULTS: Overall, participants reported significantly higher scores on the Talking with Providers, Managing Daily Activities and Managing Medications subscales than on the Appointment Keeping and Tracking Health Issues subscales (F[41075] = 168.970, p < .001). At the item level, median scores (on a 5-point Likert scale) suggest that AYAs had begun practising five of the 19 skills (median scores ≥4; 'Yes, I have started doing this'), while a median score of 1 ('No, I don't know how') was found for one item ('Do you get financial help with school or work?'). At the subscale level, TRAQ-FR skills and skill gaps were related to AYAs' age, sex and PedsQL scores (ps < .05). CONCLUSION: Older and female AYAs were more likely to have begun practising specific TRAQ-FR subscale skills. Better psychosocial functioning was also related to having learned specific transition readiness skills. AYAs show several gaps in transition readiness. Targeted intervention in transition readiness skill development could take into account AYAs' age, sex and psychosocial functioning for a successful transfer to adult care.

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey.

Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.

Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool.

BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. METHODS: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. RESULTS: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. CONCLUSIONS: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

Assessing Physician's Motivational Communication Skills: 5-Step Mixed Methods Development Study of the Motivational Communication Competency Assessment Test.

BACKGROUND: Training physicians to provide effective behavior change counseling using approaches such as motivational communication (MC) is an important aspect of noncommunicable chronic disease prevention and management. However, existing evaluation tools for MC skills are complex, invasive, time consuming, and impractical for use within the medical context. OBJECTIVE: The objective of this study is to develop and validate a short web-based tool for evaluating health care provider (HCP) skills in MC-the Motivational Communication Competency Assessment Test (MC-CAT). METHODS: Between 2016 and 2021, starting with a set of 11 previously identified core MC competencies and using a 5-step, mixed methods, integrated knowledge translation approach, the MC-CAT was created by developing a series of 4 base cases and a scoring scheme, validating the base cases and scoring scheme with international experts, creating 3 alternative versions of the 4 base cases (to create a bank of 16 cases, 4 of each type of base case) and translating the cases into French, integrating the cases into the web-based MC-CAT platform, and conducting initial internal validity assessments with university health students. RESULTS: The MC-CAT assesses MC competency in 20 minutes by presenting HCPs with 4 out of a possible 16 cases (randomly selected and ordered) addressing various behavioral targets (eg, smoking, physical activity, diet, and medication adherence). Individual and global competency scores were calculated automatically for the 11 competency items across the 4 cases, providing automatic scores out of 100. From the factorial analysis of variance for the difference in competency and ranking scores, no significant differences were identified between the different case versions across individual and global competency (P=.26 to P=.97) and ranking scores (P=.24 to P=.89). The initial tests of internal consistency for rank order among the 24 student participants were in the acceptable range (α=.78). CONCLUSIONS: The results suggest that MC-CAT is an internally valid tool to facilitate the evaluation of MC competencies among HCPs and is ready to undergo comprehensive psychometric property analyses with a national sample of health care providers. Once psychometric property assessments have been completed, this tool is expected to facilitate the assessment of MC skills among HCPs, skills that will better support patients in adopting healthier lifestyles, which will significantly reduce the personal, social, and economic burdens of noncommunicable chronic diseases.

Getting ready for transition to adult care: Tool validation and multi-informant strategy using the Transition Readiness Assessment Questionnaire in pediatrics.

BACKGROUND: Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients' transition readiness. In this study, we aimed to (1) document the psychometric properties of the French-language version of the TRAQ (TRAQ-FR), (2) assess agreements and discrepancies between AYA patients' and their primary caregivers' TRAQ-FR scores, and (3) identify transition readiness contributors. METHODS: French-speaking AYA patients (n = 175) and primary caregivers (n = 168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ-FR, the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0), and a sociodemographic questionnaire. The validity of the TRAQ-FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intraclass correlation coefficients and paired-sample t tests. Contributors of transition readiness were identified using regression analyses. RESULTS: The five-factor model of the TRAQ was supported, with the TRAQ-FR global scale showing good internal consistency for both AYA patients' and primary caregivers' scores (α = .85-.87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ-FR global scale with AYA patients scoring higher than primary caregivers (ICC = .80; d = .25). AYA patients' age and sex were found to be contributors of transition readiness. CONCLUSIONS: The TRAQ-FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ-FR.

The Integration of Resource Patients in Collaborative Research: A Mixed Method Assessment of the Nesting Dolls Design.

OBJECTIVES: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor. METHODS: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(n = 19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research. RESULTS: The design proved to be pertinent to resolve methodological stakes in a "fragile field". The mobilisation of collaborators as members of a "Sherpa team" in all phases of the project helped the team create a progressive focus approach well-adapted for data gathering and analysis as well as produce a high-quality database. CONCLUSION: The Nesting Dolls Design including the didactic approach developed along the deployment of the project helped researchers, clinicians and resource patients/parents understand the research procedures and the roles of all collaborators. This fostered a meaningful engagement in the project. PRACTICE IMPLICATIONS: Resources and time for training, communication and supervision are necessary to reach the objectives of collaborative research involving novices and are worth the time and efforts.

Development and inter-rater reliability of a tool assessing hypnotic communication behaviours adopted by nurses caring for children with cancer: The Sainte-Justine Hypnotic Communication Assessment Scale.

BACKGROUND: Several studies in pediatric oncology have shown the successful effects of using hypnotic communication techniques (HCTech) during painful medical procedures. Since no studies assessed the precise use of these techniques with a validated tool, it is unsure that the observed relationships involve the use of HCTech. OBJECTIVES: To develop a scale evaluating healthcare professionals' behaviours when using HCTech and to evaluate its inter-rater reliability. METHODS: This study involved the preliminary steps of the Sainte-Justine Hypnotic Communication Assessment Scale (SJ-HCAS) development process. As part of a larger intervention study, the SJ-HCAS was developed in three steps by five experts and four lay raters using an iterative process applied to subsets of video-recorded nurse-patient interactions. The development aimed to maximize clarity and precision of items as well as minimize redundancy amongst items. Inter-rater reliability was assessed in a randomly selected sample of 1/3 of collected video-recorded interactions (n=42). RESULTS: The final version of the scale is composed of 11 items categorized in two domains pertaining to Relationship and Technique. We found excellent inter-rater reliability for both subscores and total score in two independent inter-rater comparisons (median ICC=0.879), with most items showing very good to perfect inter-rater reliability (median Kappa=0.847). CONCLUSIONS: The results support further work with the SJ-HCAS. The scale has the potential to help ensure the integrity of hypnotic communication training in children which could ultimately promote the dissemination of the practice of HCTech.

Stability and Repeatability of the Distress Thermometer (DT) and the Edmonton Symptom Assessment System-Revised (ESAS-r) with Parents of Childhood Cancer Survivors.

OBJECTIVE: Parents report psychological distress in association with their child's cancer. Reliable tools are needed to screen parental distress over the cancer trajectory. This study aimed to estimate the stability and repeatability of the Distress Thermometer (DT) and the Depression and Anxiety items of the Edmonton Symptom Assessment System-revised (ESAS-r-D; -A) in parents of children diagnosed with cancer. METHODS: Fifty parents (28 mothers, median age = 44) of clinically stable survivors of childhood solid and brain tumours completed questionnaires about their own distress (DT, ESAS-r-D; -A, Brief Symptom Inventory-18: BSI-18, Patient Health Questionnaire-9: PHQ-9, Generalized Anxiety Disorder-7: GAD-7) and their children's quality of life (QoL; Peds Quality of Life: PedsQL) twice, with a month interval between the two assessments. At retest, parents also evaluated life events that occurred between the two time points. Hierarchical regressions explored moderators for the temporal stability of test measures. RESULTS: Stability estimates were ICC = .78 for the DT, .55 for the ESAS-r-D, and .47 for the ESAS-r-A. Caseness agreement between test and retest was substantial for the DT, fair for the ESAS-r-D, and slight for the ESAS-r-A. Repeatability analyses indicated that the error range for the DT was more than 2 pts below/above actual measurement, whereas it was more than 3 pts for the ESAS-r-A, and 2.5 for the ESAS-r-D. Instability of the DT could be explained by changes in children's physical QoL, but not by other components of QoL or life events. No moderators of stability could be identified for the ESAS-r items. CONCLUSIONS: The DT appears to be a fairly stable measure when the respondent's condition is stable yet with a relatively wide error range. Fluctuations in distress-related constructs may affect the temporal stability of the DT. The lower stability of ESAS-r items may result from shorter time-lapse instructions resulting in a greater sensitivity to change. Findings support future research on the DT as a reliable instrument in caregivers.

How does a physician's accurate understanding of a cancer patient's unmet needs contribute to patient perception of physician empathy?

OBJECTIVE: Unmet supportive care needs of patients decrease patient perception of physician empathy (PE). We explored whether the accurate physician understanding of a given patient's unmet needs (AU), could buffer the adverse effect of these unmet needs on PE. METHODS: In a cross-sectional design, 28 physicians and 201 metastatic cancer patients independently assessed the unmet supportive care needs of patients. AU was calculated as the sum of items for which physicians correctly rated the level of patient needs. PE and covariates were assessed using self-reported questionnaires. Multilevel analyses were carried out. RESULTS: AU did not directly affect PE but acted as a moderator. When patients were highly expressive and when physicians perceived poor rapport with the patient, a high AU moderated the adverse effect of patient unmet needs on PE. CONCLUSION: Physician AU has the power to protect the doctor-patient relationship in spite of high patient unmet needs, but only in certain conditions. PRACTICE IMPLICATIONS: Physicians should be encouraged toward AU but warned that high rapport and patient low emotional expression may impede an accurate reading of patients. In this latter case, they should request a formal assessment of their patients' needs.

Mindfulness-based intervention for teenagers with cancer: study protocol for a randomized controlled trial.

BACKGROUND: Individuals living with cancer must learn to face not only the physical symptoms of their condition, but also the anxiety and uncertainty related to the progression of the disease, the anticipation of physical and emotional pain related to illness and treatment, the significant changes implied in living with cancer, as well as the fear of recurrence after remission. Mindfulness-based meditation constitutes a promising option to alleviate these manifestations. METHODS/DESIGN: This article presents the rationale and protocol development for a research project aimed at evaluating the effects of a mindfulness-based meditation intervention on quality of life, sleep, and mood in adolescents with cancer compared to a control group. A prospective, longitudinal, experimental design involving three time points (baseline, post-intervention, and follow-up) and two groups (experimental and control) was developed for this project. Participants will be assigned randomly to either group. Eligible participants are adolescents aged 11 to 18 years with a diagnosis of cancer, with no specific selection/exclusion based on type, stage, or trajectory of cancer. A final sample size of 28 participants is targeted. Adolescents in the experimental group will be completing the mindfulness meditation intervention, taught by two trained therapists. The intervention will comprise of eight weekly sessions, lasting 90 min each. Once the follow-up assessment is completed by the experimental group, wait-list controls will be offered to complete the mindfulness-based program. Intra-group analyses will serve to evaluate the impact of the mindfulness-based meditation intervention on quality of life, sleep, and mood pre-post intervention, as well as follow-up. Analyses will also be used to carry out inter-group comparisons between the experimental group and the wait-list controls. Voluntary participation, risk of attrition, and the small sample size are potential limitations of this project. In spite of possible limitations, this project will be one among very few aimed at improving quality of life, sleep, and mood in adolescents living with cancer, will evaluate the potential benefits of such a practice on both psychological and physical health of youth with cancer, and help in creating mindfulness-based intervention programs, in order to provide the necessary psychological help to adolescents living with cancer. TRIAL REGISTRATION NUMBER: NCT01783418.