Internet videoconferencing delivered cognitive behaviour therapy for generalized anxiety disorder: A randomized controlled trial.

OBJECTIVE: Generalized anxiety disorder (GAD) is a chronic mental health condition that results in significant individual and societal burden. Cognitive-behaviour therapy (CBT) therapy is an effective treatment for GAD, however, many individuals experience logistical barriers when accessing evidence-based care. Remote treatments may help to reduce these barriers, however, currently, there are few studies examining the efficacy of high-intensity remote methods for GAD treatment. The current study aims to examine the efficacy of CBT delivered via videoconferencing (VCBT) for GAD using a randomized controlled trial design comparing an immediate treatment group to a waitlist control. METHOD: Seventy-eight adults (Mage = 36.92; SD = 12.92; 84.4% female) with GAD were enrolled in the study. RESULTS: Those in the treatment group demonstrated a statistically significant reduction in GAD symptoms from pre-treatment to post-treatment (d = 1.03) and pre-treatment to 3-month follow-up (d = 1.50). Large between-group effect sizes were also observed at post-treatment (d = .80). Twenty-five participants (64.10%) in the VCBT group no longer met diagnostic criteria for GAD at post-treatment, and 26/39 (66.67%) no longer met criteria at 3-month follow-up. Ninety-six per cent of participants were satisfied with the treatment. CONCLUSION: The results contribute towards advancing our knowledge on the efficacy and acceptability of VCBT for patients with GAD.

Development and validation of the Pain-Induced Comfort Eating Scale in a chronic pain sample.

Background: Chronic pain and higher body weight frequently co-occur. This common comorbidity is thought to be mediated by the use of comfort eating as a strategy for managing both the physical and psychological pain and discomfort associated with flare-ups of chronic pain. Valid and reliable assessment tools are needed to inform the development of effective treatments. Aims: This study aimed to assess the psychometric properties of a new brief measure of pain-induced comfort eating in chronic pain, the Pain-Induced Comfort Eating Scale (PICES). Methods: A sample of 166 patients with chronic pain completed an online test battery including the PICES along with measures of chronic pain and pain-related symptoms, disordered eating, and related psychological factors. Results: Results of exploratory factor analysis revealed a single-factor model for the four-item PICES. Further, the PICES demonstrated evidence of good internal consistency as well as convergent validity with demonstrated correlations with related measures. The results of this study also revealed that comfort eating in chronic pain appears to be related to psychological distress; the PICES correlated more strongly with measures assessing mood and psychological distress compared to interference/intensity of physical pain itself. Scores on the PICES also correlated strongly with measures of uncontrolled and emotional eating. Conclusions: Overall, our results indicate that the PICES provides a valid and useful brief measure of comfort eating in chronic pain that might be useful to inform treatments targeting the comorbid disordered eating practices that can lead to higher body weights in patients with chronic pain.

Contexte : La douleur chronique et un poids corporel élevé coexistent fréquemment.On pense que cette comorbidité commune est médiée par la consommation d'aliments de réconfort comme stratégie de gestion de la douleur physique et psychologique, ainsi que de l'inconfort associé aux poussées de douleur chronique. Des outils d'évaluation valides et fiables sont nécessaires pour informer le développement de traitements efficaces.Objectifs : Cette étude visait à évaluer les propriétés psychométriques d'une nouvelle mesure brève de la consommation d'aliments de réconfort induite par la douleur chronique, l'Échelle de consommation d'aliments de réconfort induite par la douleur (PICES).Méthodes : Un échantillon de 166 patients souffrant de douleur chronique se sont soumis à une batterie de tests en ligne comprenant le PICES, de même que des mesures de la douleur chronique et des symptômes liés à la douleur, des troubles alimentaires et des facteurs psychologiques associés.Résultats : Les résultats de l'analyse factorielle exploratoire ont révélé un modèle à un seul facteur pour le PICES à quatre éléments. De plus, le PICES a démontré une bonne cohérence interne ainsi qu'une validité convergente avec des corrélations démontrées avec des mesures connexes. Les résultats de cette étude ont également révélé que la consommation d'aliments de réconfort dans les cas de douleur chronique semble être liée à la détresse psychologique; le PICES était plus fortement corrélé aux mesures évaluant l'humeur et la détresse psychologique que l'interférence/l'intensité de la douleur physique elle-même. Les scores obtenus pour le PICES étaient également fortement corrélés avec des mesures de la consommation alimentaire incontrôlée et émotionnelle.Conclusions : Dans l'ensemble, nos résultats indiquent que l'échelle PICES constitue une mesure brève, valide et utile de la consommation d'aliments de réconfort par les patients souffrant de douleur chronique qui pourrait être utile pour informer les traitements ciblant les pratiques alimentaires comorbides qui peuvent conduire à la douleur. Les traitements ciblant les troubles alimentaires comorbides qui peuvent conduire à un poids corporel plus élevé chez les patients souffrant de douleur chronique pourraient s'en inspirer.

'What doesn't kill you. . .': A qualitative analysis of factors impacting the quality of life of people living with HIV.

Despite viral suppression, people living with HIV (PLHIV) report lower quality of life (QoL) than the general population, negatively impacting treatment adherence and wellbeing. This qualitative study explored factors influencing QoL of PLHIV. Participants completed a QoL questionnaire, with cut-off scores used to allocate participants into Low-Moderate QoL (n = 11) or High-Very High QoL (n = 10) focus groups. Thematic analysis indicated convergence across factors perceived to impact QoL, with some notable discrepancies. Socioeconomic stability, social connection and support, maintaining good health, adaptive attitudes and reduced impact of stigma were perceived to improve QoL, while obstacles to connection, ageing and poor HIV literacy in the general population were perceived to worsen QoL in both groups. The Low-Moderate QoL group alone identified socioeconomic stressors and ongoing burden of negative life experiences worsened their QoL. Results are presented in the context of local and global HIV health strategies, with implications for clinical management noted.

Treatment histories, barriers, and preferences for individuals with symptoms of generalized anxiety disorder.

Generalized anxiety disorder (GAD) is a prevalent and chronic mental health condition, associated with considerable individual and economic burden. Despite the availability of effective treatments, many individuals do not access support. The current study explores treatment histories, barriers to help-seeking, and cognitive behavioral therapy (CBT) treatment preferences for individuals with clinically significant GAD symptoms. The utility of Health Belief Model (HBM) in predicting help-seeking is also examined. A cross-sectional design with 127 participants (Mage = 29.17; SD = 11.86; 80.3% female) was used. Sixty-two percent of participants reported previously seeking psychological treatment, and approximately 28% received CBT in the first instance. The most influential treatment barriers were a desire to solve the problem on one's own (M = 1.96, SD = 0.96), followed by affordability (M = 1.75, SD = 1.15) and feeling embarrassed or ashamed (M = 1.75, SD = 1.06). The most preferred treatment modes were in-person individual treatment (M = 7.59, SD = 2.86) followed by remote treatment via videoconferencing (M = 4.31, SD = 3.55). Approximately 38% of the variance in intention to seek treatment was associated with the HBM variables, with perceived benefit of treatment being the strongest predictor. Results have the potential to inform mental health service delivery by reducing treatment barriers and aligning public health campaigns with benefits of psychological treatments.

Defining core outcomes of reproductive genetic carrier screening: A Delphi survey of Australian and New Zealand stakeholders.

OBJECTIVE: Understanding the value, benefits and harms of health interventions is needed to inform best practice and ensure responsible implementation of new approaches to patient care. Such value is demonstrated through the assessment of outcomes; however, which outcomes are assessed is often highly varied across studies and can hinder the ability to draw robust conclusions. The Core Outcome Development for Carrier Screening study aims to understand the outcomes that can meaningfully capture the value of reproductive genetic carrier screening (RGCS). METHOD: The authors report an iterative, two-round online Delphi survey of Australian and New Zealand stakeholders to determine the degree of consensus regarding the core outcomes of RGCS. Panellists ranked 83 outcomes according to their perceived importance on a nine-point Likert scale. Using the distribution of rankings, outcomes were grouped into tiers representative of their perceived level of importance and agreement between groups. RESULTS: The top tier outcomes represent those agreed to be critically important for all future studies of RGCS to assess and were used to define a preliminary core outcome set encompassing the domains (1) primary laboratory outcomes, (2) pregnancy outcomes, (3) resource use and, (4) perceived utility of RGCS. CONCLUSION: These findings can guide the selection of meaningful outcomes in studies aiming to demonstrate the value of RGCS. A future international consensus process will expand on these findings and guide the inclusion of diverse perspectives across the range of settings in which RGCS is offered.

Psychological interventions for post stroke pain: A systematic review.

Chronic pain is prevalent after stroke and has a significant impact on quality of life. Research demonstrates the efficacy of psychological interventions for mixed chronic pain conditions. This review aimed to assess evidence on the effectiveness of psychological interventions for chronic pain in people with stroke. PubMed, PsychINFO, Embase, and CINAHL were searched from inception to 31 January 2021 at all levels of evidence. Psychological interventions assessing chronic pain in adults following stroke as a primary outcome were included. All outcomes related to pain quality were included (e.g., intensity, frequency, duration). Study quality was assessed using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Case Reports and Risk of Bias in N-of-1 Trials (RoBiNT) Scale. Three single n case reports were included. A narrative synthesis was performed, indicating that psychological interventions may reduce chronic post-stroke pain; however, overall quality appraisal of the included studies was poor, owing to the low internal validity found in the single-n case report designs. The limited evidence suggests that psychological interventions may have clinical utility in reducing chronic post-stroke pain. However, owing to the paucity and quality of studies found, the results must be treated with caution. More rigorous research is needed.

The influence of the significant other on treatment adherence in chronic pain management: a qualitative analysis.

Objectives. Adherence to treatment recommendations is critical for optimising quality of life for individuals with chronic pain, however adherence rates are low. This study explores the role that significant others are perceived to play in supporting or impeding treatment adherence, as well as examining patient views of the impact of their adherence regimes on their significant others.Design. 25 treatment seeking adults with chronic pain, who were currently living with a romantic partner or adult family member, took part in individual semi-structured interviews.Main outcome measures Interviews were transcribed verbatim and analysed using thematic analysis.Results. Three treatment adherence support themes emerged: social support (emotional, instrumental), positive social control, and supporting autonomy. Participants did not perceive significant others as having any negative influence on their adherence. By contrast, patients perceived that their adherence behaviors had both positive and negative effects on their significant others.Conclusions. These data present an encouraging perspective on the interpersonal context of coping with chronic pain. Significant others facilitated adherence in a range of ways. Future research identifying how best to integrate significant other support into patient self-management programs is needed, in order to lift the poor treatment adherence rates that are noted in the literature.

Quality of Life of People Living with HIV in Australia: The Role of Stigma, Social Disconnection and Mental Health.

HIV is a manageable chronic illness, due to advances in biomedical management. However, many people living with HIV (PLHIV) continue to experience psychosocial challenges, which have been associated with poorer quality of life (QoL). This study aimed to explore how psychosocial factors contributed to the QoL of PLHIV in Australia; specifically, the relationship between HIV-related stigma, social connectedness, mental health, and QoL. Participants were 122 PLHIV attending The Albion Centre (a tertiary HIV clinic in Sydney, Australia), who completed questionnaires which measured HIV-related stigma, social support, mental health symptomology and QoL. Results indicated that HIV-related stigma predicted poorer QoL, as did mental health symptomology. Conversely, social connectedness improved QoL. Additionally, social connectedness was found to mediate the relationship between HIV-related stigma and QoL, whereas the hypothesized moderating role of mental health symptomology on this model was not significant. These findings provide insight into the impact of psychosocial factors on QoL, offering practitioners various points of clinical intervention.

Clinician experience of metaphor in chronic pain communication.

OBJECTIVES: This study investigated clinician experience of patient use of metaphors in chronic pain communication. METHODS: Interviews were conducted with eighteen Australian clinicians working with chronic pain patients, age range 26-64 years (M=46.6), 50% female, experience working in chronic pain ranging from 2 to 27 years (M=11.16). RESULTS: Thematic Analysis yielded four key themes: Metaphor as communicative tool, Metaphor as clue, Metaphor as obstacle, and Metaphor use in treatment. Clinicians identified metaphor as an important tool for patients to communicate their pain experience, whilst acknowledging that it could at times be unhelpful to patients. Metaphor was seen to contain useful information for clinicians and possess utility in assessment and treatment. CONCLUSIONS: Metaphors play a significant role in chronic pain consultations, enabling clinician insight into pain type, psychopathology, and patient pain understanding. Metaphor in treatment phases may be underutilised. Clinicians should encourage patient metaphor use in chronic pain communication.

Outcomes of Importance to Patients in Reproductive Genetic Carrier Screening: A Qualitative Study to Inform a Core Outcome Set.

There is significant heterogeneity in the outcomes assessed across studies of reproductive genetic carrier screening (RGCS). Only a small number of studies have measured patient-reported outcomes or included patients in the selection of outcomes that are meaningful to them. This study was a cross-sectional, qualitative study of 15 patient participants conducted to inform a core outcome set. A core outcome set is an approach to facilitate standardisation in outcome reporting, allowing direct comparison of outcomes across studies to enhance understanding of impacts and potential harms. The aim of this study was to incorporate the patient perspective in the development of a core outcome set by eliciting a detailed understanding of outcomes of importance to patients. Data were collected via online, semi-structured interviews using a novel method informed by co-design and the nominal group technique. Data were analysed using reflexive thematic analysis. Outcomes elicited from patient stakeholder interviews highlighted several under-explored areas for future research. This includes the role of grief and loss in increased risk couples, the role of empowerment in conceptualising the utility of RGCS, the impact of societal context and barriers that contribute to negative experiences, and the role of genetic counselling in ensuring that information needs are met and informed choice facilitated as RGCS becomes increasingly routine. Future research should focus on incorporating outcomes that accurately reflect patient needs and experience.

Internet videoconferencing delivered cognitive behavior therapy for generalized anxiety disorder: protocol for a randomized controlled trial.

BACKGROUND: Generalized anxiety disorder (GAD) is a chronic mental health condition that results in a significant individual and societal burden. While cognitive behavioral therapy (CBT) is well established as an efficacious treatment for GAD, many patients experience logistical barriers when accessing face-to-face CBT. Remotely delivered treatments remove many of these barriers. Despite emerging evidence demonstrating the efficacy of remotely delivered CBT for GAD, studies examining the efficacy of remote methods for GAD that are analogous to standard face-to-face treatment, in particular synchronous treatments such as CBT delivered via online videoconferencing (VCBT), are needed. METHODS: The authors propose a two-group randomized controlled trial comparing the efficacy of VCBT for GAD against a waitlist control group. The recruitment target will be 78 adults with primary GAD of at least moderate severity. The manualized high-intensity VCBT intervention will be delivered weekly over a 10-week period. After treatment completion, waitlist participants will receive the same VCBT delivered in a brief format (i.e., weekly over a 5-week period). Treatment for both groups will be delivered in real time via an online teleconferencing platform. Outcome measures will be administered at baseline, mid-treatment, post-treatment, and 3-month follow-up. DISCUSSION: This trial will report findings on the efficacy of a remote synchronous high-intensity VCBT intervention for GAD. The results have the potential to contribute towards advancing our knowledge on the evidence base for GAD, as well as increase the dissemination of VCBT for GAD. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621000786897 . Registered on 22 June 2021.

Extending the Biopsychosocial Conceptualisation of Chronic Post Surgical Pain in Children and Adolescents: The Family Systems Perspective.

A substantial number of children and adolescents undergoing surgical procedures, as many as 40% in some estimates, will go on to develop chronic postsurgical pain (CPSP). Because of the significant negative impact of CPSP on social and emotional milestones, as well as the child's quality of life, it is important to identify modifiable factors that are associated with the onset and maintenance of the condition. Research has demonstrated that parent factors can play a role in pediatric chronic pain; however, there has been little examination of parent and family influences on the transition to CPSP. Family systems theories, which consider the influence of the family unit overall on the behavior of individuals members, have been applied to the eating disorders literature for decades. This narrative review proposes a novel application of family systems theory to pediatric CPSP and, in particular, highlights the role that parental dyadic factors may play in the development and maintenance of persistent pain following surgery in children and adolescents.

Un nombre considérable d'enfants et d'adolescents subissant des interventions chirurgicales, allant jusqu'à 40 % selon certaines estimations, développera une douleur chronique post-chirurgicale (DCPC). En raison des répercussions négatives importantes de la DCPC sur les jalons sociaux et émotionnels, ainsi que sur la qualité de vie de l'enfant, il est important de déterminer les facteurs modifiables qui sont associés à l'apparition et au maintien de la maladie. La recherche a démontré que les facteurs parentaux peuvent jouer un rôle dans la douleur chronique pédiatrique; cependant, l'influence des parents et de la famille sur la transition vers la DCPC a été peu étudiée. Les théories des systémes familiaux, qui étudient l'influence de l'unité familiale dans son ensemble sur le comportement de chacun de ses membres, sont appliquées à la littérature sur les troubles de l'alimentation depuis des décennies. Cette revue narrative propose une application novatrice de la théorie des systémes familiaux à la DCPC pédiatrique. En particulier, elle met en évidence le rôle que les facteurs dyadiques parentaux peuvent jouer dans le développement et le maintien d'une douleur persistante aprés une intervention chirurgicale chez les enfants et les adolescents.

Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences.

Genetic counseling and diagnostic genetic testing is part of the multidisciplinary care of people with amyotrophic lateral sclerosis (ALS, commonly called motor neurone disease, MND) and frontotemporal dementia (FTD). We explored client experiences of genetic counseling and diagnostic testing to inform the care of future families. Semi-structured interviews with individuals with ALS/MND/FTD or their relatives were conducted. The study was designed to include a wide variety of participants with varying disease status and abilities. Genetic counseling and diagnostic testing experiences were explored using interpretive description methodology. Bioecological theory was used as the framework for the reflexive thematic analysis. Eighteen individuals with ALS/MND/FTD or their relatives from 13 Australian families participated. Three themes were identified: sharing knowledge, (un)supportive care, and 'circumstance is everything'. Consistent with bioecological theory, one's genetic counseling experience was informed by individual circumstances, time, and proximal factors. These informed the level of information and support required in the genetic counseling process. Although some client circumstances cannot be changed, efforts could be made to enhance genetic counseling experiences by improving interactions between the client and their care team. Some clients may benefit from further discussions regarding the familial implications of genetic testing, and greater support with family communication. Clients' needs were derived from the data and will contribute to genetic counseling consensus guidelines.

Corrigendum: Reduced Glutamate in the Medial Prefrontal Cortex Is Associated With Emotional and Cognitive Dysregulation in People With Chronic Pain.

[This corrects the article DOI: 10.3389/fneur.2019.01110.].

Remote cognitive-behavioral therapy for generalized anxiety disorder: A preliminary meta-analysis.

BACKGROUND: Generalized anxiety disorder (GAD) is a chronic mental health condition that results in significant individual, societal, and economic burden. While cognitive behavioral therapy (CBT) is well established as an efficacious treatment for GAD, individuals have identified several logistical barriers to accessing face-to-face CBT. Remotely delivered treatments address many of these treatment barriers. METHODS: The aim of the current study was to synthesize the current literature on the efficacy of remote CBT for GAD using a meta-analytic approach. Relevant articles were identified through an electronic database search and 10 studies (with 11 remote conditions and 1071 participants) were included in the meta-analysis. RESULTS: Within-group findings indicate that remote CBT for GAD results in large effect sizes from pretreatment to posttreatment (g = 1.30; 95% confidence interval [CI]: 1.03-1.58). Both low intensity and high intensity remote CBT interventions were found to result in large effect sizes (g = 1.36; 95% CI: 1.11-1.61 and g = 0.83; 95% CI: 0.20-1.47, respectively), with no significant differences between the treatment formats (Q1 = 2.28, p = 0.13). Between-group effect sizes were medium in size at posttreatment (g = 0.76; 95% CI: 0.47-1.06). CONCLUSIONS: These findings have potential implications for the delivery of evidence-based treatment for GAD and the inclusion of remote methods in stepped care treatment approaches.

Toward genetic counseling practice standards for diagnostic testing in amyotrophic lateral sclerosis and frontotemporal dementia.

Objective: Genetic counseling and diagnostic genetic testing are considered part of the multidisciplinary care of individuals with amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). We aimed to investigate the ideal components of genetic counseling for ALS/FTD diagnostic testing amongst various stakeholders using an online, modified Delphi survey. Methods: Experts in genetic counseling and testing for ALS/FTD were purposively then snowball recruited and included genetic health professionals, health professionals outside of genetics and consumer experts (patients, relatives, and staff representatives from ALS/FTD support organizations). First-round items were informed by two systematic literature reviews and qualitative interviews with patients and families who had experienced diagnostic testing. Analysis of each round informed the development of the subsequent round and the final results. Results: Forty-six experts participated in the study, 95.65% completed both rounds. After round one, items were updated based on participant responses and were presented again for consensus in round two. After round two, a high level of consensus (≥80% agreement) was achieved on 16 items covering various topics related to genetic counseling service delivery, before and after diagnostic testing is facilitated. Conclusions: Genetic counseling for individuals with ALS/FTD and their families should include the provision of client-centered counseling, education and support throughout. The items developed are adaptable to varied healthcare settings and may inform a standard of genetic counseling practice for health professionals who facilitate testing and counseling discussions. This area of work is timely, given demand for testing is likely to increase as more genotype-driven clinical trials become available.

Incorporating patient perspectives in the development of a core outcome set for reproductive genetic carrier screening: a sequential systematic review.

There is currently no consensus on the key outcomes of reproductive genetic carrier screening (RGCS). This has led to a large amount of variability in approaches to research, limiting direct comparison and synthesis of findings. In a recently published systematic review of quantitative studies on RGCS, we found that few studies incorporated patient-reported outcomes. In response to this gap, we conducted a sequential systematic review of qualitative studies to identify outcomes exploring the patient experience of RGCS. In conjunction with the review of quantitative studies, these outcomes will be used to inform the development of a core outcome set. Text excerpts relevant to outcomes, including quotes and themes, were extracted verbatim and deductively coded as outcomes. We conducted a narrative synthesis to group outcomes within domains previously defined in our review of quantitative studies, and identify any new domains that were unique to qualitative studies. Seventy-eight outcomes were derived from qualitative studies and grouped into 19 outcome domains. Three new outcome domains were identified; 'goals of pre- and post-test genetic counselling', 'acceptability of further testing and alternative reproductive options', and 'perceived utility of RGCS'. The identification of outcome domains that were not identified in quantitative studies indicates that outcomes reflecting the patient perspective may be under-represented in the quantitative literature on this topic. Further work should focus on ensuring that outcomes reflect the real world needs and concerns of patients in order to maximise translation of research findings into clinical practice.

The Language of Pain: Is There a Relationship Between Metaphor Use and Adjustment to Chronic Pain?

OBJECTIVE: Metaphor, frequently used in chronic pain, can function as a communicative tool, facilitating understanding and empathy from others. Previous research has demonstrated that specific linguistic markers exist for areas such as pain catastrophizing, mood, as well as diagnostic categories. The current study sought to examine potential associations between the types of pain metaphors used and diagnostic category, disability, and mood. DESIGN: Online cross-sectional survey in Sydney, Australia. SUBJECTS: People with chronic pain (n = 247, age 19-78 years, M = 43.69). METHODS: The data collected included demographics, pain metaphors, the Brief Pain Inventory (BPI) and the Depression, Anxiety, and Stress Scales (DASS-21). Associations between metaphor source domains, obtained via Systematic Metaphor Analysis, and scores on the BPI, DASS-21, as well as diagnostic group were considered using binary logistic analysis. RESULTS: Use of different pain metaphors was not associated with pain intensity, however the extent to which pain interfered with daily life did have a relationship with use of metaphorical language. Preliminary support was found for an association between the use of certain pain metaphors and self-reported diagnostic categories, notably Endometriosis, Complex Regional Pain Syndrome, and Neuropathic pain. CONCLUSIONS: There may be specific linguistic metaphorical markers to indicate pain interference and for particular diagnoses. Appreciation of pain metaphors has potential to facilitate communication and enhance understanding in interactions between clinicians and people with chronic pain.

Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review.

OBJECTIVE: To understand contemporary genetic counseling and testing practices for late-onset neurodegenerative diseases (LONDs), and identify whether practices address the internationally accepted goals of genetic counseling: interpretation, counseling, education, and support. METHODS: Four databases were systematically searched for articles published from 2009 to 2020. Peer-reviewed research articles in English that reported research and clinical genetic counseling and testing practices for LONDs were included. A narrative synthesis was conducted to describe different practices and map genetic counseling activities to the goals. Risk of bias was assessed using the Qualsyst tool. The protocol was registered with PROSPERO (CRD42019121421). RESULTS: Sixty-one studies from 68 papers were included. Most papers focused on predictive testing (58/68) and Huntington's disease (41/68). There was variation between papers in study design, study population, outcomes, interventions, and settings. Although there were commonalities, novel and inconsistent genetic counseling practices were identified. Eighteen papers addressed all four goals of genetic counseling. CONCLUSION: Contemporary genetic counseling and testing practices for LONDs are varied and informed by regional differences and the presence of different health providers. A flexible, multidisciplinary, client- and family-centered care continues to emerge. As genetic testing becomes a routine part of care for patients (and their relatives), health providers must balance their limited time and resources with ensuring clients are safely and effectively counseled, and all four genetic counseling goals are addressed. Areas of further research include diagnostic and reproductive genetic counseling/testing practices, evaluations of novel approaches to care, and the role and use of different health providers in practice.