Communication about hereditary cancer risk to offspring: A systematic review of children's perspective.

OBJECTIVE: The present review describes how children experience hereditary cancer risk communication within the family. METHODS: Searches for studies between 1990 and 2020 on PubMed and EBSCO were undertaken, and 15 studies met the inclusion criteria, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The findings informed: (1) how, when and what is discussed about hereditary cancer risk in the family; (2) how does family communication about hereditary cancer risk impact children on psychosocial and behavioral outcomes; (3) what are the child's preferences regarding hereditary cancer risk communication within the family. RESULTS: Disclosure is done mostly by both parents, or mothers only, which is in accordance with the children's preferences. Children value open communication about cancer risk with their parents, although they report experiences of fear, surprise, feeling unhappy, and concern about the increased risk of cancer. Regardless of the method of disclosure, children may be particularly sensitive to their parent's emotional state at the time of disclosure, and they learn from their parents' experiences the potential implications of cancer risk. Children also report that it would be helpful to learn more about genetic cancer syndromes via written materials, and/or meet a genetic counselor. CONCLUSIONS: Children rely on their parents as the primary models of the hereditary cancer experience. Therefore, parents play a central role in the psychological adjustment of children. Findings point to the relevance of family-centered care in hereditary cancer risk that targets not only the mutation carrier individually but also their children and partners.

Mediators of outcome in adolescent psychotherapy and their implications for theories and mechanisms of change: a systematic review.

Psychotherapeutic treatment of adolescents requires age-specific approaches and thus plausibly also involves different change mechanisms than adult psychotherapy. To guide further research and improve therapeutic outcomes for adolescents, we reviewed all RCTs investigating mechanisms of change in the psychological treatment of adolescents to identify the most promising age-, disorder- or treatment-specific mediators. Following the preferred reporting items for systematic reviews (PRISMA), 106 studies were included that reported 252 statistical mediation tests assessed with 181 different measures. Most often studied and significant mediators were cognitive, followed by family-related, and behavioral variables. Several mediators were identified to be promising for future investigations: changes in negative thoughts, dysfunctional beliefs and metacognitive skills; family functioning and parenting skills; as well as successful engagement in therapy activities and increased impulse control. Symptom change during therapy was least often a mediator for other therapeutic changes. Relational and emotional mediators were largely understudied, whereas peer-influence appeared a promising mediator for intervention outcomes. Adolescence-specific mediators were most commonly investigated. Majority of studied mediators were not disorder-specific. There was a tendency to mainly test change mechanisms of specific theoretical models without considering other possible change theories. Further, virtually no studies fulfilled all criteria for rigorously investigating mediation and only nine were classified with an overall good study quality. While bearing in mind the current limitations in study designs, methodological rigor and reporting, there appears to be substantial evidence for transdiagnostic age-specific change models in the psychological treatment of adolescents. For future research, need for consensus on a core set of transdiagnostic and transtheoretical mediators and measures is highlighted. These should address likely core mechanisms of change, as well as take into account age-relevant developmental challenges and biological markers.

The psychometric properties of PSYCHLOPS, an individualized patient-reported outcome measure of personal distress.

OBJECTIVE: Few studies report the psychometric properties of individualized patient-reported outcome measures (I-PROMs) combining traditional analysis and Item Response Theory (IRT). METHODS: Pre- and posttreatment PSYCHLOPS data derived from six clinical samples (n = 939) were analyzed for validity, reliability, and responsiveness; caseness cutoffs and reliable change index were calculated. Exploratory and confirmatory factor analyses were used to determine whether items represented a unidimensional construct; IRT examined item properties of this construct. RESULTS: Values for internal consistency, construct validity, convergent and discriminant validity, and structural validity were satisfactory. Responsiveness was high: Cohen's d, 1.48. Caseness cutoff and reliable clinical change scores were 6.41 and 4.63, respectively. IRT analysis confirmed that item scores possess strong properties in assessing the underlying trait measured by PSYCHLOPS. CONCLUSION: PSYCHLOPS met the criteria for norm-referenced measurement of patient psychological distress. PSYCHLOPS functioned as a measure of a single latent trait, which we describe as "personal distress."

Idiographic patient reported outcome measures (I-PROMs) for routine outcome monitoring in psychological therapies: Position paper.

Idiographic patient-reported outcome measures (I-PROMs) are a growing set of individualized tools for use in routine outcome monitoring (ROM) in psychological therapies. This paper presents a position statement on their conceptualization, use, and analysis, based on contemporary evidence and clinical practice. Four problem-based, and seven goal-based, I-PROMs, with some evidence of psychometric evaluation and use in psychotherapy, were identified. I-PROMs may be particularly valuable to the evaluation of psychological therapies because of their clinical utility and their alignment with a patient-centered approach. However, there are several challenges for I-PROMs: how to generate items in a robust manner, their measurement model, methods for establishing their reliability and validity, and the meaning of an aggregated I-PROM score. Based on the current state of the literature, we recommend that I-PROMs are used to complement nomothetic measures. Research recommendations are also made regarding the most appropriate methods for analyzing I-PROM data.

Problematic use of the internet during the COVID-19 pandemic: Good practices and mental health recommendations.

With the onset of the COVID-19 pandemic and the accelerated spread of the SARS-CoV-2 virus came jurisdictional limitations on mobility of citizens and distinct alterations in their daily routines. Confined to their homes, many people increased their overall internet use, with problematic use of the internet (PUI) becoming a potential reason for increased mental health concerns. Our narrative review summarizes information on the extent of PUI during the pandemic, by focusing on three types: online gaming, gambling and pornography viewing. We conclude by providing guidance for mental health professionals and those affected by PUI (with an outline of immediate research priorities and best therapeutic approaches), as well as for the general public (with an overview of safe and preventative practices).

Advances in problematic usage of the internet research - A narrative review by experts from the European network for problematic usage of the internet.

Global concern about problematic usage of the internet (PUI), and its public health and societal costs, continues to grow, sharpened in focus under the privations of the COVID-19 pandemic. This narrative review reports the expert opinions of members of the largest international network of researchers on PUI in the framework of the European Cooperation in Science and Technology (COST) Action (CA 16207), on the scientific progress made and the critical knowledge gaps remaining to be filled as the term of the Action reaches its conclusion. A key advance has been achieving consensus on the clinical definition of various forms of PUI. Based on the overarching public health principles of protecting individuals and the public from harm and promoting the highest attainable standard of health, the World Health Organisation has introduced several new structured diagnoses into the ICD-11, including gambling disorder, gaming disorder, compulsive sexual behaviour disorder, and other unspecified or specified disorders due to addictive behaviours, alongside naming online activity as a diagnostic specifier. These definitions provide for the first time a sound platform for developing systematic networked research into various forms of PUI at global scale. Progress has also been made in areas such as refining and simplifying some of the available assessment instruments, clarifying the underpinning brain-based and social determinants, and building more empirically based etiological models, as a basis for therapeutic intervention, alongside public engagement initiatives. However, important gaps in our knowledge remain to be tackled. Principal among these include a better understanding of the course and evolution of the PUI-related problems, across different age groups, genders and other specific vulnerable groups, reliable methods for early identification of individuals at risk (before PUI becomes disordered), efficacious preventative and therapeutic interventions and ethical health and social policy changes that adequately safeguard human digital rights. The paper concludes with recommendations for achievable research goals, based on longitudinal analysis of a large multinational cohort co-designed with public stakeholders.

Evaluation of Cocoa Bean Shell Antimicrobial Activity: A Tentative Assay Using a Metabolomic Approach for Active Compound Identification.

Cocoa bean shell is one of the main by-products of chocolate manufacturing and possesses several compounds with biofunctionalities. It can function as an antibacterial agent, and its action is mostly reported against Streptococcus mutans. However, only a few studies have investigated the cocoa bean shell compounds responsible for this activity. This study aimed to evaluate several extracts of cocoa bean shells from different geographical origins and cocoa varieties and estimate their antimicrobial properties against different fungal and bacterial strains by determining their minimal inhibitory concentration. The results demonstrated antimicrobial activity of cocoa bean shell against one of the tested strains, S. mutans. Cocoa bean shell extracts were further analysed via LC-HRMS for untargeted metabolomic analysis. LC-HRMS data were analysed (preprocessing and statistical analyses) using the Workflow4Metabolomics platform. The latter enabled us to identify possible compounds responsible for the detected antimicrobial activity by comparing the more and less active extracts. Active extracts were not the most abundant in polyphenols but contained higher concentrations of two metabolites. After tentative annotation of these metabolites, one of them was identified and confirmed to be 7-methylxanthine. When tested alone, 7-methylxanthine did not display antibacterial activity. However, a possible cocktail effect due to the synergistic activity of this molecule along with other compounds in the cocoa bean shell extracts cannot be neglected. In conclusion, cocoa bean shell could be a functional ingredient with benefits for human health as it exhibited antibacterial activity against S. mutans. However, the antimicrobial mechanisms still need to be confirmed.

Preventing problematic internet use during the COVID-19 pandemic: Consensus guidance.

As a response to the COVID-19 pandemic, many governments have introduced steps such as spatial distancing and "staying at home" to curb its spread and impact. The fear resulting from the disease, the 'lockdown' situation, high levels of uncertainty regarding the future, and financial insecurity raise the level of stress, anxiety, and depression experienced by people all around the world. Psychoactive substances and other reinforcing behaviors (e.g., gambling, video gaming, watching pornography) are often used to reduce stress and anxiety and/or to alleviate depressed mood. The tendency to use such substances and engage in such behaviors in an excessive manner as putative coping strategies in crises like the COVID-19 pandemic is considerable. Moreover, the importance of information and communications technology (ICT) is even higher in the present crisis than usual. ICT has been crucial in keeping parts of the economy going, allowing large groups of people to work and study from home, enhancing social connectedness, providing greatly needed entertainment, etc. Although for the vast majority ICT use is adaptive and should not be pathologized, a subgroup of vulnerable individuals are at risk of developing problematic usage patterns. The present consensus guidance discusses these risks and makes some practical recommendations that may help diminish them.

Engaging Children and Young People in Digital Mental Health Interventions: Systematic Review of Modes of Delivery, Facilitators, and Barriers.

BACKGROUND: There is a high prevalence of children and young people (CYP) experiencing mental health (MH) problems. Owing to accessibility, affordability, and scalability, an increasing number of digital health interventions (DHIs) have been developed and incorporated into MH treatment. Studies have shown the potential of DHIs to improve MH outcomes. However, the modes of delivery used to engage CYP in digital MH interventions may differ, with implications for the extent to which findings pertain to the level of engagement with the DHI. Knowledge of the various modalities could aid in the development of interventions that are acceptable and feasible. OBJECTIVE: This review aimed to (1) identify modes of delivery used in CYP digital MH interventions, (2) explore influencing factors to usage and implementation, and (3) investigate ways in which the interventions have been evaluated and whether CYP engage in DHIs. METHODS: A literature search was performed in the Cochrane Library, Excerpta Medica dataBASE (EMBASE), Medical Literature Analysis and Retrieval System Online (MEDLINE), and PsycINFO databases using 3 key concepts "child and adolescent mental health," "digital intervention," and "engagement." Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed using rigorous inclusion criteria and screening by at least two reviewers. The selected articles were assessed for quality using the mixed methods appraisal tool, and data were extracted to address the review aims. Data aggregation and synthesis were conducted and presented as descriptive numerical summaries and a narrative synthesis, respectively. RESULTS: This study identified 6 modes of delivery from 83 articles and 71 interventions for engaging CYP: (1) websites, (2) games and computer-assisted programs, (3) apps, (4) robots and digital devices, (5) virtual reality, and (6) mobile text messaging. Overall, 2 themes emerged highlighting intervention-specific and person-specific barriers and facilitators to CYP's engagement. These themes encompassed factors such as suitability, usability, and acceptability of the DHIs and motivation, capability, and opportunity for the CYP using DHIs. The literature highlighted that CYP prefer DHIs with features such as videos, limited text, ability to personalize, ability to connect with others, and options to receive text message reminders. The findings of this review suggest a high average retention rate of 79% in studies involving various DHIs. CONCLUSIONS: The development of DHIs is increasing and may be of interest to CYP, particularly in the area of MH treatment. With continuous technological advancements, it is important to know which modalities may increase engagement and help CYP who are facing MH problems. This review identified the existing modalities and highlighted the influencing factors from the perspective of CYP. This knowledge provides information that can be used to design and evaluate new interventions and offers important theoretical insights into how and why CYP engage in DHIs.

Capturing and missing the patient's story through outcome measures: A thematic comparison of patient-generated items in PSYCHLOPS with CORE-OM and PHQ-9.

BACKGROUND: There is increasing interest in individualized patient-reported outcome measures (I-PROMS), where patients themselves indicate the specific problems they want to address in therapy and these problems are used as items within the outcome measurement tool. OBJECTIVE: This paper examined the extent to which 279 items reported in an I-PROM (PSYCHLOPS) added qualitative information which was not captured by two well-established outcome measures (CORE-OM and PHQ-9). DESIGN: Comparison of items was only conducted for patients scoring above the "caseness" threshold on the standardized measures. SETTING AND PATIENTS: 107 patients were participating in therapy within addiction and general psychiatric clinical settings. MAIN RESULTS: Almost every patient (95%) reported at least one item whose content was not covered by PHQ-9, and 71% reported at least one item not covered by CORE-OM. DISCUSSION: Results demonstrate the relevance of individualized outcome assessment for capturing data describing the issues of greatest concern to patients, as nomothetic measures do not always seem to capture the whole story.

Mediators of Outcome in Trauma-Focused Psychotherapy with Youth: A Systematic Review.

This article aimed to provide a systematic narrative synthesis of existing studies on the mediators of change in psychotherapy with adolescents (10-19 years) and transition age youth (TAY) (20-29 years) who have experienced trauma-related symptoms or posttraumatic disorder. Additionally, we were interested in identifying psychotherapy-, trauma type-, and clients' age- and gender-specific mediators of treatment outcome. Following the preferred reporting items for systematic reviews and meta-analyses, a total of 3,723 studies published in PubMed and PsycINFO databases were screened against inclusion criteria, revealing 15 eligible studies. No studies with only TAY were found; therefore, all results were limited to therapy with adolescents. Cognitive mediators were tested in 66% of selected studies, followed by parents/family-related, mental-health-related, therapy-related, and behavioral mediators. Moderate evidence was found for posttraumatic cognitions, whereas therapeutic alliance seemed to be a promising candidate for future research. Striking absence of non-cognitive-behavioral therapy interventions, emotional and adolescent-specific mediators, as well as studies with males and in non-Western societies was evident. Future original studies would benefit from applying methodological rigor in respect to mediation testing.

Enhancing the patient involvement in outcomes: a study protocol of personalised outcome measurement in the treatment of substance misuse.

BACKGROUND: Involving patients in treatment is becoming increasingly popular in mental health [Sales & Alves: Personalized evaluation of psychological treatments: A review of tools and research designs, submitted]. However, in substance misuse treatment settings, the patient perspective about treatment tends to be overlooked. This has been cited as a key priority by Orford et al. [Addiction, 103: 875-885, 2008] who included patient feedback about treatment as one of ten areas requiring an urgent paradigm shift in addiction research and practice.This project will apply an innovative method to involve substance misuse patients in psychological therapies, by asking them to suggest topics to evaluate their treatment. These topics suggested by patients can be written as a list of personalised items, so-called as patient-generated outcome measures (PGOM). Despite its patient-friendly features, PGOM's have never been used in this population, which is what this project aims to overcome. METHODS/DESIGN: This project is part of an International Exchange Platform on Personalising Addiction Treatment. Data will be collected in two phases (pre-post study and focus groups with patients) to explore the following: (1). How reliable and sensitive to change are PGOM's and standardised measures in substance misuse treatment? (2). Do PGOM's add relevant information to standardised measures? (3). What are the views of substance misuse patients about personalised outcome assessment? (4). Development of guidelines on using PGOM's in this population DISCUSSION: This research will potentially demonstrate the diversity of personal problems among patients seeking substance misuse treatment, suggesting the relevance of PGOM as a method to personalise outcome measurement and, ultimately, guiding treatment provision. It is expected that, as in previous studies, PGOM's will be perceived as helpful and patient-friendly tools, where patients may express their own concerns in a semi-structured setting. Similarly to other populations, we also expect PGOM's to be reliable, valid and sensitive to clinical changes in substance misuse treatment, as well as more content informative than their standardised counterparts. If these results are achieved, we might hypothesize that PGOM's are a potentially valid supplement to traditional standardised scales, by providing a closer insight to what motivates patients to participate in substance misuse treatment programmes.

Taking Care of an Adolescent and Young Adult Cancer Survivor: A Systematic Review of the Impact of Cancer on Family Caregivers.

Research usually investigates adolescents and young adults (AYA) with cancer in combination with younger and older cancer patients and survivors. However, AYAs with cancer are a unique group, and their caregivers' experience may also differ from other caregivers of cancer survivors. This systematic review aims to understand the impact of a cancer diagnosis on family caregivers, comparing the experience of caregivers of AYA childhood cancer survivors (AYA CCS) and caregivers of AYA with cancer. Relevant studies were identified through PubMed, Scopus, and Web of Science databases, and their quality was assessed using the Joanna Briggs Institute's critical appraisal checklists. Sixteen studies (17 reports) met the inclusion criteria. Findings were synthesized separately for caregivers of AYA CCS and caregivers of AYA with cancer. Results showed that caregivers in both groups experienced high distress after the diagnosis. Partners of AYAs with cancer experienced diminished quality of life (QoL) and over half reported moderate to high fear of cancer recurrence (FCR). Findings indicated that cancer negatively impacts family caregivers, regardless of the patient's age at diagnosis. However, findings are heterogeneous, and most do not focus on QoL or FCR. More research is needed on the impact of cancer among these family caregivers.

The Genetic Psychosocial Risk Instrument (GPRI): A Validation Study for European Portuguese.

INTRODUCTION: Screening instruments specifically developed to identify genetic testing applicants who may need professional psychosocial support are much needed. However, there are no screening instruments validated for the Portuguese language. This paper presents the translation, adaptation, and validation process of the Genetic Psychosocial Risk Instrument in a sample of 207 Portuguese applicants to genetic testing in the context of inherited cancer risk. MATERIAL AND METHODS: Participants were mainly female (84.06%), with a mean age of 40.08 (SD = 12.89) and were recruited from the Portuguese Oncology Institute of Porto. Confirmatory factor analysis was conducted to confirm the Genetic Psychosocial Risk Instrument factorial structure. Convergent validity was assessed with the Impact of Events Scale, the Clinical Outcome Routine Evaluation - Outcome Measure, and the Hospital Anxiety and Depression Scale. RESULTS: A model composed by the factors 'Internal Impact of Genetic Testing', 'External Impact of Genetic Testing' and 'History of Mental Health Concerns' was confirmed. These factors showed good internal consistency, convergent and discriminant validity. The factor 'Personal Loss to Cancer' proposed in the Canadian and French versions did not converge. We propose excluding this factor from the European Portuguese version of the scale. CONCLUSION: The European Portuguese version of the Genetic Psychosocial Risk Instrument is a reliable and valid instrument, although more research is needed to effectively use it in routine clinical oncogenetic departments.

Introdução: A literatura tem apontado a necessidade de instrumentos de rastreio de risco psicossocial desenvolvidos especificamente para o contexto do teste genético. No entanto, de acordo com o nosso melhor conhecimento, não existe nenhum instrumento com estas características que esteja validado para a língua portuguesa. Este artigo apresenta o processo de tradução, adaptação e validação do Instrumento de Risco Psicossocial Genético numa amostra de 207 utentes convidados à realização de testes genéticos no contexto de risco de cancro hereditário. Material e Métodos: Os participantes são maioritariamente do sexo feminino (84,06%), com média de idade de 40,08 (DP = 12,89) e foram recrutados no Instituto Português de Oncologia do Porto. Foi realizada uma análise fatorial confirmatória para estudar a estrutura fatorial do Instrumento de Risco Genético Psicossocial. A validade convergente foi avaliada com a Escala de Impacto de Eventos, a Escala da Avaliação de Rotina de Resultado Clínico - Medida de Resultado e a Escala de Ansiedade e Depressão Hospitalar. Resultados: Confirmou-se um modelo composto pelos fatores 'Impacto Interno do Teste Genético', 'Impacto Externo do Teste Genético' e 'Histórico de Preocupações com a Saúde Mental'. Estes fatores apresentaram boa consistência interna, validade convergente e discriminante. O fator 'Perda Pessoal para o Cancro' proposto nas versões Canadiana e Francesa não convergiu. Propomos excluir este fator da versão portuguesa da escala. Conclusão: A versão portuguesa do Instrumento de Risco Genético Psicossocial é um instrumento confiável e válido, embora seja necessária mais investigação para que seja integrado efetivamente na prática de rotina.

Emotion-focused therapy for fear of cancer recurrence: A hospital-based exploratory outcome study.

Fear of cancer recurrence (FCR) is a main concern for most cancer survivors and can bring significant distress impacting well-being and quality of life. Although other psychological approaches have been developed for dysfunctional FCR, based on previous research, emotion-focused therapy (EFT) might also be a relevant intervention for treating this concern. A total of 17 adults with a cancer diagnosis and presenting FCR among other cancer-related concerns were offered EFT, delivered in a regular practice in a cancer hospital (mean number of sessions = 13, range: 4-25). Outcome and process instruments were used to assess general psychological distress, client-generated outcome items, and helpful and hindering aspects of therapy. Significant pre-post outcome differences were found, both for client-generated (d = 1.53) and standard (d = .88) measures, with no cases of reliable deterioration, although most patients did not show clinically significant change by the end of therapy. The most frequent helpful in-session processes were client verbal expression of experience and work on parts of self; the most common immediate session impacts were positive feelings and self-realizations. EFT may be a useful alternative treatment for FCR. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Problematic use of the Internet in low- and middle-income countries before and during the COVID-19 pandemic: a scoping review.

People from low- and middle-income countries (LMICs) represent large portions of the world population, often occupy less favorable living conditions, and typically suffer greater health risks, yet frequently receive little research and global health attention. The present study reviews emerging evidence on problematic use of the Internet (PUI) in LMICs prior/during the COVID-19 pandemic. Analyzed studies mainly focused on general properties of PUI in university students, problematic gaming in youth, or problematic use of social media in adults, registering higher prevalence estimates, as compared with earlier reports. Research mainly focused on initially affected regions and COVID-exposed populations. Overall, unfavorable circumstances, including poor social support, family relationships, and lifestyle tendencies/habits, may present potential risk for PUI in LMICs, likely exacerbated during the pandemic.

Distress facing increased genetic risk of cancer: The role of social support and emotional suppression.

OBJECTIVES: Healthy individuals from hereditary cancer families undergoing genetic testing for cancer susceptibility (GTC) report more distress when they perceive their social support as low and suppress their emotions. This study aimed to explore how suppressing emotions and perceiving others as unsupportive are related with cancer-risk distress. METHODS: We performed a regression-based mediation analysis to assess if expressive suppression mediates or is mediated by perceived social support in the relation with cancer-risk distress. Participants were 125 healthy adults aged over 18 (M = 36.07, SD = 12.86), mostly female (72,4%), who undergone GTC to assess the presence of hereditary breast and ovarian cancer or Lynch syndromes. RESULTS: Controlling for age and gender, we found a moderate size indirect effect of social support on cancer-risk distress through expressive suppression (ß = -0.095) and a direct effect of expressive suppression on cancer-risk distress. CONCLUSIONS: When healthy individuals from hereditary cancer families perceive their social network as less responsive, they tend to not express their emotions, which relates to increased distress facing GTC. PRACTICE IMPLICATIONS: Practitioners may assess cancer-risk related distress before the GTC and offer distressed individuals interventions focused on changing emotion regulation strategies in a safe group context.

"I have always lived with the disease in the family": family adaptation to hereditary cancer-risk.

BACKGROUND: Hereditary cancer syndromes have been conceptualized as a family level process. The present study explores the complexity and challenges of family adaptation to the hereditary cancer syndrome, in the context of genetic counseling and long-term cancer risk management and follow-up surveillance. METHODS: We performed semi-structured interviews with 13 participants with one of the following hereditary cancer syndromes: Lynch Syndrome, Hereditary Diffuse Gastric Cancer Syndrome, Hereditary Breast and Ovarian Cancer Syndrome, or Familial Adenomatous Polyposis. The interview was developed through a participatory approach with the involvement of healthcare professionals and individuals with first-hand experience of living with the hereditary cancer syndromes. RESULTS: The family is the main source of information and emotional support to deal with hereditary cancer syndromes. Multiple individual adaptation processes and communal coping networks interact, influencing the emotional and health-related behavior of family members. This is affected and affects the family's communication and its' members reactions to disclosure, with consequent changes in relationships. CONCLUSIONS: The systemic interdependent dynamics of family adaptation calls for family-centered care of genetic cancer syndromes.

Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review.

Hereditary cancer syndromes are inherited pathogenic genetic variants that significantly increase the risk of developing cancer. When individuals become aware of their increased probability of having cancer, the whole family is affected by this new reality and needs to adjust. However, adjustment to hereditary cancer syndromes has been mainly studied at an individual level, and research about familial adjustment remains dispersed and disorganized. To overcome this gap, this review aims to understand how families adjust to genetic testing and risk management, and to what extent the family's adjustment influences the psychological response and risk management behaviors of mutation carriers. We conducted searches on the PubMed/Med Line, PsycInfo, SCOPUS, and Google Scholar databases and used the Mixed Methods Appraisal Tool (MMAT-v2018) to assess the methodological quality of each selected study. Thirty studies met the inclusion criteria. Most results highlighted the interdependent nature of adjustment of pathogenic variant carriers and their families. The way carriers adjust to the syndrome is highly dependent on family functioning and related to how family members react to the new genetic information, particularly partners and siblings. Couples who share their worries and communicate openly about cancer risk present a better long-term adjustment than couples who use protective buffering (not talking about it to avoid disturbing the partner) or emotional distancing. Parents need help dealing with disclosing genetic information to their children. These findings reinforce the importance of adopting a family-centered approach in the context of genetic counseling and the necessity of involving family members in research.