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

Contributing factors of unmet needs among young adult survivors of childhood acute lymphoblastic leukemia with comorbidities

Purpose: This study aimed to: (1) describe the domains and levels of unmet needs of young adult survivors of childhood acute lymphoblastic leukemia (cALL) with comorbidities, and (2) to explore the factors associated with higher levels of unmet needs. Unmet need was considered as supportive care needs not met. Methods: The most vulnerable cALL survivors from the PETALE study cohort completed the Short-Form Survivor Unmet Needs Survey, the Brief Pain Inventory and the 15D instrument of health-related quality of life. Demographic and clinical information, including comorbidities, were obtained from medical records or self-reporting. The participants' needs and contributing factors to their needs were evaluated using nonparametric tests. Results: Of the 72 participants, 9 (13%) reported moderate/high levels of overall unmet needs. “Worry about earning money” (56%) and “Dealing with feeling tired” (51%) were the most frequent unmet needs (all levels combined). The factors associated significantly with any domain of unmet needs were: having a comorbidity, reporting altered functional health status, high ALL risk status, pain, age (<26 years), and having previously received psychological support. Conclusion: A minority of young adult survivors of cALL with comorbidities interviewed reported moderate/high levels of unmet needs. However, financial concerns and emotional health and relationship are the two domains of greatest need. Survivors with altered health condition are most at risk of experiencing moderate/high levels of unmet needs. If confirmed in larger samples, interventions should target modifiable contributors of unmet needs such as physical health and comfort, fatigue, and emotional health

Study of couple interactions in the decision-making process facing breast reconstruction in breast cancer treatment

Contexte : les Plans Cancer 2 et 3 soulignent l'importance de la décision médicale partagée. Cependant, la littérature sur la reconstruction mammaire (RM) suite à un cancer du sein montre la place essentielle du médecin dans la prise de décision. Les proches apparaissent également comme peu pris en compte par les médecins dans le choix des traitements et en particulier le partenaire intime qui est le proche généralement le plus présent aux côtés de la patiente. À l'heure actuelle, aucune recherche n'a étudié les interactions conjugales dans le processus de décision d'une RM. Pourtant, plusieurs études ont montré l'interdépendance des deux membres du couple face à une maladie chronique et le rôle essentiel du partenaire dans l'ajustement des patientes au cancer du sein. Objectif : cette recherche a pour objectif principal d'étudier les interactions conjugales dans le processus de décision d'une RM suite au diagnostic d'un cancer du sein. Méthode : deux études ainsi qu'une revue systématique de la littérature ont été réalisées afin de répondre à cet objectif. Ces deux études étaient mixtes, comprenaient une partie quantitative (auto-questionnaires) et une partie qualitative (entretiens avec les femmes et leur partenaire). La première étude était rétrospective, en interrogeant des couples plusieurs années après le diagnostic du cancer. La seconde était prospective, en interrogeant des couples juste après le diagnostic du cancer. Les données quantitatives ont fait l'objet d'analyses non-paramétriques. Les données qualitatives ont fait l'objet d'une analyse de contenu thématique, d'une analyse lexicale (pour l'étude rétrospective) et d'une analyse phénoménologique interprétative (pour l'étude prospective). Résultats : les résultats de l'étude rétrospective montrent que l'ajustement émotionnel des femmes est le même quel que soit leur décision (RM immédiate, RM différée ou sans RM). Cependant, les femmes qui n'ont pas eu de RM recommanderaient moins leur décision comparées aux femmes qui ont eu une RM. Par ailleurs, les couples rapportent que la prise de décision de la RM est vécue et prise au sein du couple. Le partenaire y apparaît comme un soutien à la décision. La question de la temporalité apparaît différemment dans le discours des couples selon la décision. Les résultats de la revue systématique soulignent les différents rôles que les proches peuvent avoir dans la prise de décision d'un traitement pour une maladie chronique, notamment de manière directe (e.g., le partenaire communique ses préférences au patient) et indirecte (e.g., le choix du patient est guidé par sa perception de ses responsabilités familiales). Les résultats de l'étude prospective montrent qu'avant la mastectomie, les partenaires de femmes qui ne vont pas avoir de RMI expriment plus d'émotions négatives et un besoin d'information plus important que les partenaires de femmes qui vont avoir une RMI. De plus, les femmes et leurs partenaires pensent à la RM au moment de la mastectomie. Ces pensées leur permettent de se projeter dans le futur, où la RM est associée à une bonne santé. Penser à la RM pourrait alors permettre aux couples de s'ajuster face à la mastectomie et au diagnostic de cancer du sein. Conclusion : la prise de décision de la RM apparaît comme vécue au sein du couple, avec des spécificités en fonction de la décision prise (RM immédiate, RM différée ou pas de RM). Au niveau clinique, ce travail permet d'identifier les besoins des couples et de proposer des pistes d'interventions et d'outils à développer afin d'accompagner les femmes et leur partenaire. Au niveau de la recherche, il conviendrait d'investiguer plus largement comment la décision de la RM est prise entre la femme, son partenaire et les différents professionnels de santé impliqués dans la prise en charge médicale.Context: cancer Plans 2 and 3 emphasize the importance of a shared decision-making. However, the literature on breast reconstruction (BR) following breast cancer shows the physician essential place in this decision-making. Close others are also little included by physicians in this treatment choice and more specifically intimate partners. The latter is usually the most present near the women. To date, no research has studied couple interactions in the decision-making process of a BR. Yet, several studies have pointed out the interdependence of both members of a couple to face a chronic illness and partners' key role in women's adjustment facing breast cancer. Objective: the main objective of this research is to study couple interactions in the decision-making process of a BR following breast cancer diagnosis. Method: two studies as well as a systematic literature review were realized to meet this objective. These two studies were mixed, including a quantitative part (self-reported questionnaires) and a qualitative part (interviews with women and their partners). The first study was retrospective, interviewing couples several years after breast cancer diagnosis. The second study was prospective, interviewing couples just after breast cancer diagnosis. Quantitative data were subjected to non-parametric analysis. Qualitative data were subjected to a thematic content analysis, a lexical analysis and an interpretative phenomenological analysis. Results: the results of the retrospective study show that women's emotional adjustment is the same regardless their decision (immediate BR, delayed BR or no BR). However, women without BR would less recommend their decision compared to women with BR. In addition, couples report that BR decision was lived and taken within the couple. Partners were described as supportive in the decision-making process. The question of temporality emerged differently in couple's discourse according to the decision. The results of the systematic literature review highlight the different roles family members can have in treatment decision-making of a chronic illness, including direct (e.g., the partner says his/her preferences to the patient) and indirect influence (e.g., patient's choice is guided by his/her perception of his/her family responsibilities). The results of the prospective study shows that before the mastectomy, partners of women not having an immediate BR express more negative emotions and a greater need for information compared to partners of women having an immediate BR. Furthermore, women and their partners think to the BR at the time of the mastectomy. These thoughts allow couples to project themselves in the future, where BR is associated to a good health. Thinking to BR could allow couples to cope with the mastectomy and breast cancer diagnosis. Conclusion: BR decision-making appears as experienced within the couple, with specificities considering the decision (immediate BR, delayed BR or no BR). At the clinical level, this work allows to identify couples needs and to propose interventions and tools to develop in order to accompany women and their partners. At the research level, it should be distinguished more broadly how BR decision is made between the women, her partner and the health professionals involved in the medical care

Young adult carers' identification, characteristics, and support: A systematic review

International audienceYoung Adult Carers (YAC) are informal carers aged 18–25 years. This is an unrecognized population. The present systematic review aims to respond to: (1) how YAC are identified in research; (2) the prevalence of YAC; (3) the characteristics of YAC; and (4) how to support YAC. Five electronic databases (Google Scholar, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection, and PubMed) were searched for studies, scientific articles, and gray literature on YAC published prior to January 18, 2021. The quality of included studies was assessed using the Crow Critical Appraisal Tool, and a narrative method was used to underline major findings. Twenty-three studies were included and revealed that there were several ways to identify YAC, resulting in heterogeneous prevalence. Nine themes were highlighted for YAC characteristics (way into caring; care receiver; caring responsibilities; amount of caring; self-identification as a carer; living arrangement; physical, psychological, and adaptative outcomes; interpersonal relationships; education and employment); and three for YAC support (needs, available support services, and recommendations). The findings showed the diversity of YAC experiences. Although YAC expressed several needs, there are few or no support services devoted to them. More research is needed to improve political awareness. Systematic review registration https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021231882 , identifier: CRD42021231882

Sexual health in colon cancer patients: A systematic review

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Are digital health interventions valuable to support patients with cancer and caregivers? An umbrella review of web‐based and app‐based supportive care interventions

Abstract Background Digital health technologies have expanded tremendously in the last two decades, creating an emerging research and clinical field. They are regarded as cost‐effective, and their use in healthcare is prioritized by many countries. However, the constant evolution of these technologies has led to an abundance of related literature. Thus, we conducted an umbrella review to identify and characterize digital supportive care interventions for patients with cancer and their relatives. Methods A preregistered umbrella review was conducted (PROSPERO registration number CRD42022333110). Five databases were searched (Embase, PsycINFO, PubMed, CINAHL, and the Cochrane Library). To be considered, studies had to be systematic reviews or meta‐analyses, be performed on pediatric or adult patients with cancer or survivors or their relatives, report results on web‐based or app‐based supportive care interventions, and measure psychological, functional, or behavioral variables or quality of life related to cancer. The methodological quality of the studies was assessed using the AMSTAR‐2 tool. Findings Twenty eligible studies were identified. Most of the included studies reported results from adult patients with cancer. Globally, digital interventions were shown to be effective for physical activity in patients with cancer but had mixed results regarding emotional outcomes and quality of life. Additionally, a lack of methodological quality was noted for most of the included reviews. Discussion Digital supportive care interventions could be an effective tool in cancer care for some outcomes. Recommendations have been formulated for further research in this field using adapted methodologies for the development of digital health interventions

Diet, physical activity, obesity, and breastfeeding: How French people perceive factors associated with cancer risk

International audienceThe French Cancer Barometer, a population-based-survey, is carried out every five years and is, to date, one of the few national studies conducted to investigate individual perception linked to cancer risk factors. The aims of the present study were to describe the perceptions of the French population in 2015 and to assess their evolution over a 5-year period (2010–2015). The French Cancer Barometer surveyed a randomly selected sample of participants aged 15–75 years (n = 3345 in 2010) and 15–85 years (n = 3764 in 2015), representative of the French population. Questions were on perception of diet, physical activity, obesity, and breastfeeding as cancer risk factors. In 2015, nutritional/activity factors were perceived as having an important role in cancer development for the majority of those surveyed (diet (90.8%), obesity (76%), and physical activity (70%)) with the exception being breastfeeding (34%). However, there was a moderate perception of the risks of red meat (43%) and salt or salty food (55%) consumption. Perceptions of nutritional risk factors were mostly associated with age and education level. Interestingly, there was a greater perception of nutritional risk factors in 2015 compared to 2010, and the participants’ opinions were also stronger. Efforts should be made on individuals with lower educational level and to promote the beneficial effects of breastfeeding. However, to impact food behavior, measures are needed at the environmental level and not only at the individual one

Caregivers' perception of patients’ interpersonal and psychiatric alterations: What is the impact on their health?

International audiencePurpose: Previous research conducted among caregivers of patients with cancer revealed a poor Quality of Life(QoL) and high levels of distress. In addition to the influence of patients’ clinical state, caregivers’ appraisals ofpatients’ difficulties should be considered as another predictor of poor caregiver health. This study aims to testthe association between caregivers’ health (i.e., QoL, depression and anxiety) and their perception of patients’difficulties.Methods: 199 caregivers of patients with cancer completed an online survey based on questionnaires measuringtheir QoL, depression and anxiety, as well as their perception of patients’ cognitive, emotional, functional,psychiatric and interpersonal difficulties.Results: It was found that the appraisal of patients’ impairments in all domains was mainly correlated with poorcaregivers’ QoL . Furthermore, linear regression analysesshowed that, after controlling for age, sex education level, professional activity and living with or without thepatient, the appraisal of patients’ interpersonal abilities , psychiatric difficulties and living with the patient were the main predictors of caregivers’ QoL.Conclusion: This study highlights the importance of better understanding the role of patients’ social and psychiatricdifficulties when examining caregivers’ health. This indicates the importance of providing support andoffering information to caregivers to alert them to the role of patients’ social and psychiatric difficulties on theirown health. Future studies should better understand how these difficulties are associated with caregivers’perception of identity/sociability alterations in patients and how caregivers cope with these changes