Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta: A Qualitative Study.

Osteogenesis imperfecta (OI) is a genetic disorder characterized by bone fragility and fractures, short stature, dental abnormalities, hearing loss, scoliosis, and chronic pain. Despite a growing literature on the functional outcomes of OI, limited research has explicitly examined the psychosocial outcomes of pain within OI. Adults with OI (N = 15) were interviewed to understand pain-related experiences through a thematic analysis of semi-structured interview data. Research team members, genetic research experts, and OI clinicians developed an interview guide focused on topics related to pain and mental health challenges. Participants' transcripts were coded by two independent coders; codes were then merged across coders and quotation outputs were subsequently abstracted (paraphrased then thematically classified) to identify common themes. Themes related to pain management variability regarding pain type, pain risk management and accessibility, pain outcomes (e.g., behavior, cognitive, affective), and pain exacerbating factors (e.g., individual, contextual) were identified. Participants reported chronic and acute pain, and despite the inaccessibility and stigmatization of pain medications (e.g., opioids), pharmacological treatments were the most common pain management approach. Participants reported negative pain outcomes, such as limited daily functioning and activity participation, fear, anger, anxiety, depression, and difficulty concentrating. Lastly, participants suggested that lack of physician and community knowledge on chronic pain in OI indirectly exacerbates both subjective pain intensity and outcomes. Although limited by a small, nondiverse sample, the current study provides valuable exploration of the unique pain experiences of adults with OI that may have implications for proactive management, treatment development, and clinician training.

A qualitative exploration of patient perspectives on psychosocial burdens and positive factors in adults with osteogenesis imperfecta.

Osteogenesis imperfecta (OI) is a pleiotropic, heritable connective tissue disorder associated with a wide range of health implications, including frequent bone fracture. While progress has been made to understand the spectrum of these physical health implications, the impact of OI on psychosocial well-being, as well as protective factors that buffer against adverse psychosocial outcomes, remain understudied. This present study relies on a qualitative approach to assess patient perspectives on both protective and adverse psychosocial factors specific to OI in 15 adults with varying disease status. Semi-structured interviews were conducted, subsequently coded, and themes extracted. Themes concerning psychosocial burdens (i.e., negative affective and behavioral impacts of disease status) and protective factors were identified from cooperatively-coded transcripts (two coders per transcript). Participants reported experiencing an increase in negative affect and disease-related distress after fracturing a bone and during recovery. Fear and concern specific to the uncertainty of future bone fractures and negative self-image was common. In contrast to these negative impacts, participants additionally described positive orientations toward their disease and attributed positive traits to their lived experience with a chronic disease. While limited due to small sample size and lack of ethno-racial diversity, findings highlight a need for continued research on the relationship between OI disease status and psychosocial outcomes, as well as the development of psychological interventions designed for OI populations. Findings have relevant clinical applications for healthcare providers working with those diagnosed with OI.

Clinical and Psychosocial Factors Considered When Deciding Whether to Offer Deep Brain Stimulation for Childhood Dystonia.

INTRODUCTION: Childhood dystonia is often nonresponsive to medications, and refractory cases are increasingly being treated with deep brain stimulation (DBS). However, many have noted that there is little consensus about when DBS should be offered, and there has been little examination of clinicians' decision-making process when determining whether to offer DBS for childhood dystonia. OBJECTIVES: This study aimed to identify and examine the factors considered by pediatric movement disorder specialists before offering DBS. MATERIALS AND METHODS: Semistructured interviews (N = 29) with pediatric dystonia clinicians were conducted, transcribed, and coded. Using thematic content analysis, nine central themes were identified when clinicians were asked about key factors, clinical factors, and psychosocial factors considered before offering pediatric DBS. RESULTS: Clinicians identified nine main factors. Five of these were classified primarily as clinical factors: early intervention and younger age (raised by 86% of respondents), disease progression and symptom severity (83%), etiology and genetic status (79%), clinicians' perceived risks and benefits of DBS for the patient (79%), and exhaustion of other treatment options (55%). The remaining four were classified primarily as psychosocial factors: social and family support (raised by 97% of respondents), patient and caregiver expectations about outcomes and understanding of DBS treatment (90%), impact of dystonia on quality of life (69%), and financial resources and access to care (31%). CONCLUSIONS: Candidacy determinations, in this context, are complicated by an interrelation of clinical and psychosocial factors that contribute to the decision. There is potential for bias when considering family support and quality of life. Uncertainty of outcomes related to the etiology of dystonia makes candidacy judgments challenging. More systematic examination of the characteristics and criteria used to identify pediatric patients with dystonia who can significantly benefit from DBS is necessary to develop clear guidelines and promote the well-being of these children.

A principal components analysis of factors associated with successful implementation of an LVAD decision support tool.

BACKGROUND: A central goal among researchers and policy makers seeking to implement clinical interventions is to identify key facilitators and barriers that contribute to implementation success. Despite calls from a number of scholars, empirical insights into the complex structural and cultural predictors of why decision aids (DAs) become routinely embedded in health care settings remains limited and highly variable across implementation contexts. METHODS: We examined associations between "reach", a widely used indicator (from the RE-AIM model) of implementation success, and multi-level site characteristics of nine LVAD clinics engaged over 18 months in implementation and dissemination of a decision aid for left ventricular assist device (LVAD) treatment. Based on data collected from nurse coordinators, we explored factors at the level of the organization (e.g. patient volume), patient population (e.g. health literacy; average sickness level), clinician characteristics (e.g. attitudes towards decision aid; readiness for change) and process (how the aid was administered). We generated descriptive statistics for each site and calculated zero-order correlations (Pearson's r) between all multi-level site variables including cumulative reach at 12 months and 18 months for all sites. We used principal components analysis (PCA) to examine any latent factors governing relationships between and among all site characteristics, including reach. RESULTS: We observed strongest inclines in reach of our decision aid across the first year, with uptake fluctuating over the second year. Average reach across sites was 63% (s.d. = 19.56) at 12 months and 66% (s.d. = 19.39) at 18 months. Our PCA revealed that site characteristics positively associated with reach on two distinct dimensions, including a first dimension reflecting greater organizational infrastructure and standardization (characteristic of larger, more established clinics) and a second dimension reflecting positive attitudinal orientations, specifically, openness and capacity to give and receive decision support among coordinators and patients. CONCLUSIONS: Successful implementation plans should incorporate specific efforts to promote supportive and mutually informative interactions between clinical staff members and to institute systematic and standardized protocols to enhance the availability, convenience and salience of intervention tool in routine practice. Further research is needed to understand whether "core predictors" of success vary across different intervention types.

Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.

PURPOSE: Large-scale array-based and sequencing studies have advanced our understanding of the genetic architecture of psychiatric disorders, but also increased the potential to generate an exponentially larger amount of clinically relevant findings. As genomic testing becomes more widespread in psychiatry research, urgency grows to establish best practices for offering return of results (RoR) to individuals at risk or diagnosed with a psychiatric disorder. METHODS: We interviewed an international sample (n = 39) of psychiatric genetics researchers to examine conceptualizations of "best practices" for RoR to individual research participants. RESULTS: While the vast majority of researchers do not offer RoR, most believed medically actionable findings (85%) and clinically valid but non-medically actionable findings (54%) should be offered. Researchers identified three main areas for improvement: interfacing with individual participants; interdisciplinary training, guidance, and integration; and quality planning and resource allocation for returning results. CONCLUSION: There are significant gaps between researchers' visions for "best" versus "actual" RoR practices. While researchers call for participant-centered practices, including consent practices that consider any special needs of participants with psychiatric disorders, return of individually meaningful results, and effective follow-up and provisions for treatment, the current reality is that consent and RoR practices lack standardized and evidence-based norms.

Seeing minds in patients with disorders of consciousness.

Objective: To explore the ways in which health care professionals and families understand terms and concepts associated with disorders of consciousness.Methods: Open-ended, semi-structured interviews were conducted with 20 health care professionals and 18 family caregivers affiliated with a disorders of consciousness program within a nationally ranked rehabilitation facility in the United States.Results: Analysis revealed that: (1) disagreement between some health care professionals and family caregivers regarding the presence of consciousness can arise due to differing beliefs about a patient experiencing pain, and differences in the length of time family caregivers spend with patients relative to clinical staff; (2) some health care professionals and family caregivers use nonclinical terms and concepts to describe consciousness; and (3) some family caregivers might attribute complex mental capacities to patients, which extend beyond the clinical evidence.Conclusion: The beliefs of health care professionals and families regarding disorders of consciousness are complex and could be influenced by broader psychological proclivities to "see minds" in patients who have a liminal neurological status. Awareness of these dynamics may assist health care professionals when interacting with family caregivers.

Psychiatric genetics researchers' views on offering return of results to individual participants.

In the middle of growing consensus that genomics researchers should offer to return clinically valid, medically relevant, and medically actionable findings identified in the course of research, psychiatric genetics researchers face new challenges. As they uncover the genetic architecture of psychiatric disorders through genome-wide association studies and integrate whole genome and whole exome sequencing to their research, there is a pressing need for examining these researchers' views regarding the return of results (RoR) and the unique challenges for offering RoR from psychiatric genetics research. Based on qualitative interviews with 39 psychiatric genetics researchers from different countries operating at the forefront of their field, we provide an insider's view of researchers' practices regarding RoR and the most contentious issues in psychiatry researchers' decision-making around RoR, including what are the strongest ethical, scientific, and practical arguments for and against offering RoR from this research. Notably, findings suggest that psychiatric genetics researchers (85%) overwhelmingly favor offering RoR of at least some findings, but only 22% of researchers are returning results. Researchers identified a number of scientific and practical concerns about RoR, and about how to return results in a responsible way to patients diagnosed with a severe psychiatric disorder. Furthermore, findings help highlight areas for further discussion and resolution of conflicts in the practice of RoR in psychiatric genetics research. As the pace of discovery in psychiatric genetics continues to surge, resolution of these uncertainties gains greater urgency to avoid ethical pitfalls and to maximize the positive impact of RoR.

A Multisite Randomized Controlled Trial of a Patient-Centered Ventricular Assist Device Decision Aid (VADDA Trial).

BACKGROUND: Studies indicate that decision making and informed consent among patients considering left ventricular assist device (LVAD) support for advanced heart failure could be improved. In the VADDA (Ventricular Assist Device Decision Aid) trial, we tested a patient-centered decision aid (DA) to enhance the quality of decision making about LVAD therapy. METHODS: After an extensive user-centered design process, we conducted a multisite randomized trial of the DA compared with standard education (SE) among inpatients considering LVAD treatment for advanced heart failure The main outcome was LVAD knowledge at 1 week and 1 month after administration of the DA versus the SE, according to a validated scale. Secondary measures included prespecified quality decision making measures recommended by the International Patient Decision Aid Standards collaboration. RESULTS: Of 105 eligible patients, 98 consented and were randomly assigned to the DA and SE arms. Patients receiving the VADDA exhibited significantly greater LVAD knowledge than the SE group at 1 week of follow-up (P = .01) but not at 1 month (P = .47). No differences were found between DA and SE patients in rates of acceptance versus decline of LVAD treatment (85% vs 78%; P = .74). Recipients in the DA arm reported greater satisfaction with life after implantation compared with nonrecipients (28 vs 23 out of 30; P = .008), although both arms reported high satisfaction. Patients rated the DA high in acceptability and usability. CONCLUSIONS: The VADDA enhances LVAD knowledge, particularly in the short term (1 week) during the peak period of decision making. The DA does not encourage decision direction and reflects patient, caregiver, and physician preferences for content and format. CLINICAL TRIAL REGISTRATION: https://clinicaltrials.gov/ct2/show/NCT02248974. The trial is registered with clinicaltrials.gov (NCT02248974).

Balancing risk, interpersonal intimacy and agency: perspectives from marginalised women in Zambia.

Women are most exposed to sexual health risks within their marital relationships, primarily due to the sexually risky behaviours of their spouses. Studies show that expanding agency is critical for women to mitigate both physical and sexual health risks and is linked to increased psycho-social well-being and economic independence. Drawing on qualitative and quantitative primary data collected from a peri-urban community in Zambia, this paper explores how women exert agency in a community where few educational and economic opportunities and substantial food insecurity exacerbate women's risk for HIV within their marital relationships. It also examines how expressions of agency within marital unions can reduce HIV risk exposure and lead to socio-economic benefits. However, expressions of agency can also create physical, psycho-social and sexual health risks, particularly when spouses do not support independent decision-making and actions that women consider necessary to support the household and maintain intimacy. Findings highlight the importance of community involvement and addressing harmful socio-cultural norms to foster the realisation of women's agency.

The role of Ecstasy (MDMA) in managing intimacy and conflict in stable relationships.

This paper discusses motivations for the use of MDMA among young adults in intimate relationships living in resource poor environments, where structural constraints limit potential for economic mobility and impact upon interpersonal relations. Drawing from in-depth interviews with men and women in intimate relationships with one or more partners, we report the range of motivations for MDMA use and their association with indicators of relationship quality, specifically trust and romantic exclusivity. Findings demonstrate that both men and women use MDMA primarily for the purpose of sexual enjoyment. However, men report the use of MDMA for sexual enjoyment more often, while women more frequently report the use of MDMA to compensate for psychological or physical displeasure, particularly in relationships characterised by distrust. We discuss how these motivations to use MDMA are shaped by gender norms and larger contextual and socio-economic factors and conclude with a call for more relational and sexual counselling opportunities for urban young adults to avoid MDMA use for self-medication.

Reasons Why Eligible Candidates Decline Left Ventricular Assist Device Placement.

BACKGROUND: A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs. METHOD AND RESULTS: We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management. CONCLUSIONS: Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.

Translation of the Risk Avoidance Partnership (RAP) for Implementation in Outpatient Drug Treatment Clinics.

Scientific literature increasingly calls for studies to translate evidence-based interventions into real-world contexts balancing fidelity to the original design and fit to the new setting. The Risk Avoidance Partnership (RAP) is a health promotion intervention originally designed to train active drug users to become Peer Health Advocates. A theoretically driven approach was used to adapt RAP to fit implementation in outpatient methadone treatment clinics and pilot it with clinic patients. Ethnographic observations and process tracking documented the RAP translation and pilot experience, and clinic and community characteristics relevant to program implementation. Clinic administrators, staff, and patients were interviewed on their values, capacities, interest in RAP, perceived challenges of implementing RAP in drug treatment clinics, and experiences during the pilot. Findings indicated that RAP core components can be met when implemented in these settings and RAP can fit with the goals, interests, and other programs of the clinic. Balancing fidelity and fit requires recognition of the mutual impacts RAP and the clinic have on each other, which generate new interactions among staff and require ongoing specification of RAP to keep abreast of clinic and community changes. Collaboration of multiple stakeholders significantly benefited translation and pilot processes.

Ventricular assist devices: a review of psychosocial risk factors and their impact on outcomes.

BACKGROUND: Psychosocial contraindications for ventricular assist devices (VADs) remain particularly nebulous and are driven by institution-specific practices. Our multi-institutional, multidisciplinary workgroup conducted a review with the goal of addressing the following research question: How are preoperative psychosocial domains predictive of or associated with postoperative VAD-related outcomes? Answers to this question could contribute to the development of treatment-specific (contra) indications for patients under consideration for mechanical devices. METHODS AND RESULTS: We identified 5 studies that examined psychosocial factors and their relationship to postoperative VAD-related outcomes. Our results suggest that 3 psychosocial variables are possibly associated with VAD-related outcomes: depression, functional status, and self-care. Of the few studies that exist, the generalizability of findings is constrained by a lack of methodologic rigor, inconsistent terminology, and a lack of conceptual clarity. CONCLUSIONS: This review should serve as a call for research. Efforts to minimize psychosocial risk before device placement can only be successful insofar as VAD programs can clearly identify who is at risk for suboptimal outcomes.

Resilience and coping: a qualitative analysis of cognitive and behavioral factors in adults with osteogenesis Imperfecta.

PURPOSE: The aim of this qualitative study was to investigate resilience among adults with Osteogenesis Imperfecta (OI). MATERIALS AND METHODS: Semi-structured interviews were conducted with 15 adults with OI. Transcripts were coded and subsequently abstracted, yielding themes specific to resilience and coping. Interview guides covered broad topics including pain challenges specific to OI, mental health issues related to OI, and priorities for future interventions for individuals with OI. RESULTS: Participants described resilience in the context of OI as the ability to grow from adversity, adapt to challenges resulting from OI-related injuries, and find identities apart from their condition. Psychological coping strategies included acceptance, self-efficacy, cognitive reframing, perspective-taking, and positivity. Behavioral factors that helped participants develop resilience included developing new skills, pursuing meaningful goals, practicing spirituality, and seeking external resources such as psychotherapy, education, and connection with community. CONCLUSION: Having identified how adults with OI define resilience and the strategies they use to cope, we can now develop interventions and guide healthcare providers in improving psychological wellbeing in this population.

Adults with Osteogenesis Imperfecta (OI) employ resilience factors to combat mobility and pain-related issues.Adults with OI report developing adaptive skills to cope with their disease, including forming one's identity outside of OI, growing through adversity, overcoming challenges resulting from OI-related injury, employing psychological adaptations, and practicing behavioral coping strategies.Resiliency factors such as behavioral and psychological coping (e.g., exercise, breathing strategies, acceptance) may buffer against OI-related challenges, and treatment modalities that foster these activities may be beneficial for adults with OI.

Attitudes and Beliefs of Patients With Left-Ventricular Assist Devices Toward COVID-19 Vaccination and Willingness to Seek Care During the Pandemic.

Given the stalling improvement in vaccine hesitancy rates in the United States (US), it is important to understand why a chronically ill group, patients with left-ventricular assist devices (LVADs), might not get vaccinated and to delineate the barriers they may face in seeking care. We conducted an online survey to characterize the attitudes of patients with LVADs toward COVID-19 vaccination, identify their willingness to seek care during the pandemic, and characterize barriers to doing so. Our survey showed that the rate of vaccine hesitancy among LVAD patients is similar to that of the general population in the US. This rate is higher than expected for a chronically ill group at risk of severe COVID-19 infection. We also found that LVAD patients perceive barriers to seeking care during the pandemic. We recommend that LVAD care teams emphasize that patients should seek care for emergency medical conditions despite their fears of contracting COVID-19. Based on our results, we also recommend vaccine uptake education for this population focused on patients' concerns about serious side effects and not enough research done on the vaccine.

The role of MDMA (Ecstasy) in coping with negative life situations among urban young adults.

This article examines the role of Ecstasy (MDMA or 3, 4-methylenedioxymethamphetamine) as a drug used for self-medication and coping with both short- and long-term negative life situations. We show that urban youth who do not have a specific diagnosed mental illness are more likely than those who have been diagnosed and have received treatment to use Ecstasy to cope with both situational stress and lifetime trauma. Diagnosed and treated youth sometimes self-medicate with other drugs, but do not choose Ecstasy for mediation of their psychological stress. We discuss the implications of self-medication with Ecstasy for mental health services to urban youth experiencing mental health disparities, and for the continued testing and prescription of MDMA for therapeutic use in controlled clinical settings.

Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state.

BACKGROUND: The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status. METHODS: We explored these issues in interviews with 18 family caregivers and 20 healthcare professionals caring for minimally conscious patients. Data were analyzed using thematic content analysis. RESULTS: Results suggest that family members and healthcare professionals share similar views of what consciousness is ("being there") and what it is indicated by ("a look in the eyes," and/or an "ability to do"/agency). They also share a belief that the presence (or "level") of consciousness does not determine whether rehabilitative care should be discontinued. Rather, it should be determined by considerations of suffering and well-being. Providers were more likely to view suffering as rationale for discontinuation of care, while family members viewed suffering as an indicator of and motivator for potential recovery. CONCLUSION: Findings can help optimize family-provider communications about minimally conscious patients by acknowledging shared assumptions and interpretations of consciousness, as well as key areas where perspectives diverge.Implications for rehabilitationFamily and professional caregivers' interpretations of consciousness and suffering are implicated in decisions about continuing rehabilitation for minimally conscious patients.Family members and healthcare providers both rely to some extent on non-observable evidence to evaluate consciousness, which may be an adaptive and philanthropic response to clinical uncertainty.Acknowledging shared assumptions and interpretations of consciousness, as well as diverging perspectives, can help to optimize family-provider communications.