Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions.

OBJECTIVES: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). METHODS: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. RESULTS: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. SIGNIFICANCE OF RESULTS: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents.

BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents. METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12. RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control. CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.

Utilization of palliative care consultations in pediatric oncology phase I clinical trials.

Pediatric phase I clinical oncology trials represent a unique cohort of patients who have not responded to standard therapies and remain highly vulnerable to treatment toxicity and/or disease burden. Incorporating a palliative care consultation into the care plan for those with relapsed/refractory cancer where chance of cure is limited is generally recommended. A retrospective chart review of pediatric phase I trials revealed that palliative care was consulted in <20% of patients, most often for symptom management. Efforts to increase the use of palliative services in this population may enhance quality of life for children and families enrolled in phase I studies.

Smoking Cessation Benefit Utilization: Comparing Methodologies for Measurement using New York State's Medicaid Data.

Introduction: Pharmacotherapy and counseling for tobacco cessation are evidence-based methods that increase successful smoking cessation attempts. Medicaid programs are required to provide coverage for smoking cessation services. Monitoring utilization is desirable for program evaluation and quality improvement. Various methodologies have been used to study utilization. Many factors can influence results, perhaps none more than how smokers are identified. This study evaluated the utilization of smoking cessation services using various methods to estimate the number of smokers within New York State's (NYS's) Medicaid program in 2015. Methods: Estimates of utilization were generated based on Medicaid claims and encounters and four sources of smoking prevalence: two population surveys, one Medicaid enrollee survey, and diagnosis codes. We compared the percentage of (estimated) smokers utilizing cessation services, and the average number of services used, across fee-for-service and managed care populations, and by cessation service category. Results: Statewide, smoking prevalence estimates ranged from 10.9% to 31.5%. Diagnosis codes identified less than 45% of smokers estimated by surveys. A similar number of cessation counseling (199106) and pharmacotherapy services (197728) were used, yet more members utilized counseling (126839) than pharmacotherapy (91433). The estimated percentage of smokers who used smoking cessation services ranged from 15.1% to 43.4%, and the estimated average number of cessation services used ranged from 0.31 to 0.90 per smoker. Conclusion: Smoking prevalence estimates obtained through surveys greatly exceed prevalence observed in diagnosis codes in NYS's Medicaid data. Use of diagnosis codes in the analysis of smoking cessation benefit utilization may result in overestimates. Implications: Selection of a smoking prevalence data source for similar analyses should ultimately be based on completeness of the data and applicability to the population of interest. Evaluation of smoking cessation benefit utilization and the effectiveness of tobacco control campaigns aimed to increase utilization requires a well-defined methodology which ensures reliable baseline data. Comparing utilization estimates across populations or state lines can be misleading, as differences in how estimations were generated can greatly bias observed results.

Identifying Symptoms of Distress in Youth Living with Neurofibromatosis Type 1 (NF1).

Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available. This study was conducted to test the overall usability of the Distress Thermometer (DT) and symptom checklist and concordance of DT ratings between pediatric patients, their caregivers and medical providers. Eighty youth (ages 7-21) living with NF1 completed the DT and an accompanying checklist. The findings of this study suggest the DT and symptom checklist was acceptable and feasible to complete in a clinic setting. A small subset reported high distress that required further assessment and intervention. Significant discordance between distress ratings of caregivers and children and healthcare providers was also found. Overall, the DT and accompanying symptom checklist provide important information to identify the presence of distress and contextualize the child's distress but is limited by not assessing whether these symptoms interfere with the child's daily life.

Validity, specificity, feasibility and acceptability of a brief pediatric distress thermometer in outpatient clinics.

OBJECTIVE: Psychosocial distress is under-recognized in children with cancer and other serious medical illnesses because of a focus on pressing medical concerns. AIMS: This study assessed the validity, inter-rater reliability, sensitivity/specificity, acceptability, and feasibility of administration of a pediatric distress thermometer (DT) designed to screen for the presence of psychosocial distress in youth with serious medical illnesses. MATERIALS & METHODS: Two hundred eighty-one patient-caregiver-provider triads were enrolled from two hospital outpatient clinics. Patients diagnosed with cancer and other life-threatening diseases, caregivers, and providers completed the DT and a DT acceptability rating. Patients and caregivers completed standardized measures of anxiety, depression, pain, and fatigue. Providers completed a measure of disease severity. Data collectors completed a feasibility rating. RESULTS: The DT was significantly correlated with both caregiver and patient reports of depression, anxiety, pain, and fatigue, exhibiting concurrent validity. Parent, child, and caregiver report demonstrated significant, moderate inter-rater reliability, with lower concordance between raters in the youngest age group. The DT is a sensitive instrument for screening of psychosocial distress when compared with the selected gold standard (Brief Symptom Inventory 18 depression subscale and the Children's Depression Inventory). The DT is not highly specific but quickly identifies those in need of further psychosocial assessment. DISCUSSION: Screening, using an adapted pediatric DT, is valid, feasible, and acceptable to patients, caregivers, and medical providers across chronic medical illnesses. CONCLUSION: As patient and caregiver reports are not always concordant, both patient and caregiver report of distress are important for the provider to obtain clinically meaningful information to guide interventions. Published 2015. This article is a U.S. Government work and is in the public domain in the USA.

Home testing for SARS-CoV-2 and impact on surveillance in New York State.

PURPOSE: To determine the distribution of diagnosed SARS-CoV-2 infections by testing modality (at-home rapid antigen [home tests] versus laboratory-based tests in clinical settings [clinical tests]), assess factors associated with clinical testing, and estimate the true total number of diagnosed infections in New York State (NYS). METHODS: We conducted an online survey among NYS residents and analyzed data from 1012 adults and 246 children with diagnosed infection July 13-December 7, 2022. Weighted descriptive and logistic regression model analyses were conducted. Weighted percentages and prevalence ratios by testing modality were generated. The percent of infections diagnosed by clinical tests via survey data were synthesized with daily lab-reported results to estimate the total number of diagnosed SARS-CoV-2 infections in NYS July 1-December 31, 2022. RESULTS: Over 70% of SARS-CoV-2 infections in NYS during the study period were diagnosed exclusively with home tests. Diagnosis with a clinical test was associated with age, race/ethnicity, and region among adults, and sex, age, and education among children. We estimate 4.1 million NYS residents had diagnosed SARS-CoV-2 infection July 1-December 31, 2022, compared to 1.1 million infections reported over the same period. CONCLUSIONS: Most SARS-CoV-2 infections in NYS were diagnosed exclusively with home tests. Surveillance metrics using laboratory-based reporting data underestimate diagnosed infections.

A worldview of the professional experiences and training needs of pediatric psycho-oncologists.

BACKGROUND: Thirty years after the origin of the field of psycho-oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families. METHOD: A survey was designed to assess training, work environment, theoretical orientation, services provided, subspecialty areas or areas of special interest, satisfactions, challenges, and continuing education needs of pediatric psycho-oncologists. Members of national and international psycho-oncology organizations were invited to participate in the web-based survey. RESULTS: Seven hundred eighty-six professionals from 63 countries responded. The sample consisted mostly of psychologists (41%), physicians (20%), and social workers (14%). Approximately half of the participants worked in a designated psycho-oncology unit. Psychologists and social workers provided the majority of psychosocial services. Individual sessions with parents were most common (42%), followed by sessions with children (41%), survivors (36%), families (31%), and siblings (25%). Therapies provided include cognitive behavioral therapy (50%), relaxation (43%), psychodynamic psychotherapy (27%), play therapy (26%), and imagery (23%). Two-thirds reported having appropriate supervision, 37% were conducting research, and only half felt their salary was appropriate. Differences in therapeutic modalities were found by country. Clinicians desire training on clinical interventions, improving communication with medical staff, research, and ethics. CONCLUSIONS: An international cohort of clinicians providing pediatric psycho-oncology services perform a wide variety of tasks, use a range of therapeutic approaches, and report considerable work satisfaction. Problem areas include professional inter-relations, inadequate supervision, and need for additional specialized training. Opportunity exists for global collaboration in pediatric psycho-oncology research and practices to enhance clinical effectiveness and reduce professional isolation.

A randomized controlled trial to evaluate a structural intervention to promote the female condom in New York state.

We conducted a structural intervention to promote the female condom (FC), comparing 44 agencies randomized to a Minimal Intervention (MI) [developing action plans for promotion and free access] or an Enhanced Intervention (EI) [with the addition of counselor training]. Intervention effects were evaluated via surveys with agency directors, counselors and clients at baseline and 12 months. Agency-level outcomes of the FC did not differ between the two interventions at follow-up. Counselors in the EI showed significantly greater gains in FC knowledge and positive attitudes, although there was no difference in the proportion of clients counseled on the FC, which significantly increased in both conditions. There was a greater increase in intention to use the FC among clients in EI agencies. Intervention effects were stronger in medical agencies. Findings suggest that making subsidized FCs available and assisting agencies to formulate action plans led to increased FC promotion. Limitations and implications for future research and intervention efforts are discussed.

Gastrointestinal stromal tumor: psychosocial characteristics and considerations.

OBJECTIVE: Gastrointestinal stromal tumors (GIST) are very rare, especially within the pediatric population. The National Institutes of Health initiated a multidisciplinary clinic to bring together a worldwide group of healthcare providers with experience in the study and treatment of GIST in order to better understand the disease and to examine whether this is a population at psychosocial risk. METHODS: Seven GIST clinics have been held to date. Participants completed a GIST Psychosocial Assessment containing items covering demographic factors, family stressors, general health, psychosocial concerns, psychiatric history, and self-identified needs. Our sample consists of 60 adult patients (ages 18-66) and 18 pediatric patients (ages 9-17). RESULTS: Living with pain at least a few days a week was endorsed by those whose self-reported health status was good to excellent (49% of the adult cohort and 25% of the pediatric cohort). Pain was significantly associated with anxiety, difficulties with family relationships, behavior problems, and psychotropic medication use. Body image and appearance concerns were endorsed by over half of the cohort. Post-trauma symptoms were prevalent for those newly diagnosed and those living with GIST for over 15 years. CONCLUSIONS: This is the first study to explore the psychosocial impact of GIST. Individuals living with GIST experience chronic pain, post-trauma symptoms and significant anxiety along with an expressed need for interventions to help them manage their anxiety. Due to the chronic nature of this disease, the GIST population is at risk for long-term psychological distress. Psychosocial interventions in pediatric and adult care settings are offered.

Changes in Reported Secondhand Smoke Incursions and Smoking Behavior after Implementation of a Federal Smoke-Free Rule in New York State Federally Subsidized Public Housing.

This study assessed changes in smoking behavior and secondhand smoke (SHS) exposure after implementation of the U.S. Department of Housing and Urban Development (HUD) rule prohibiting the use of cigarettes, cigars, pipes, and waterpipes in all federally subsidized public housing, including within residential units (apartments). Using quantitative data from a repeated cross-sectional mail survey of New York State residents of five public housing authorities (N = 761 at Wave 1, N = 649 at Wave 2), we found evidence of policy compliance (99% decrease in odds of self-reported smoking in units, OR = 0.01, p < 0.01, CI: 0.00−0.16), reduced SHS incursions (77% decrease in odds of smelling smoke within developments, OR = 0.23, p < 0.01, CI: 0.13−0.44), and lower reported smoking rates in July 2018 (9.5%, down from 16.8%), 10 months after implementation of the rule. Despite evident success, one-fifth of residents reported smelling smoke inside their apartment at least a few times per week. This study provides insights into how the policy was implemented in selected New York public housing authorities, offers evidence of policy-intended effects, and highlights challenges to consistent and impactful policy implementation.

ShopTalk: a pilot study of the feasibility and utility of a therapeutic board game for youth living with cancer.

PURPOSE: ShopTalk is a therapeutic game, created to help youth living with cancer talk about their illness in a non-threatening way. The aim of this study is to learn how the game is being used in clinical settings and to gather information regarding the usefulness of ShopTalk in establishing a therapeutic relationship and in assessing key psychosocial issues in the child's life. METHODS: ShopTalk was distributed at a social work pediatric oncology conference and to 70 sites. Game holders were asked to complete a survey regarding their clinical experience using ShopTalk. RESULTS: Responses came from 110 professionals. ShopTalk has been found to be as an effective tool in identifying coping skills and psychological adjustment, as well as issues related to family relationships, depression/sadness, stress, prognosis, peer relationships, and self-esteem. Respondents found ShopTalk useful from diagnosis to end of life. Qualitative feedback suggested therapeutic value along with discomfort with specific questions. CONCLUSION: ShopTalk appears to be a beneficial therapeutic tool in building rapport and identifying and discussing difficult issues with medically ill children. Areas for future versions of the game and research exploring patient/therapist outcomes are discussed.

The HIV experience: youth identified barriers for transitioning from pediatric to adult care.

OBJECTIVE: The aim of this study was to explore the experiences of youth living with HIV who transitioned from pediatric to adult care. METHODS: Semi-structured telephone interviews were conducted with 59 youth (mean age = 22 years) living with HIV about the transition experience, demographics, and health status. RESULTS: Of youth who transitioned to adult care, immune function (CD4) trended downward, 45% found the transition more difficult than anticipated, and 32% could not find emotional support services. Youth identified the need for increased continuity of care, assistance with logistics, improved communication with providers and caregivers, and individualized management of their transition process. CONCLUSION: Without adequate preparation, the transition process can be compromised with potentially serious health consequences. Youth living with HIV seek adult providers that can provide developmentally appropriate transition interventions that address loss, disclosure, and sexual behavior along with medical needs.

Triggers for Palliative Care Referral in Pediatric Oncology.

Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remains underutilized. We conducted a retrospective chart review of pediatric oncology patients treated at an academic institution between January 2015 to November 2018. Data collected included demographics, disease and therapy characteristics, and consultation notes, specifically documenting existence of predetermined "high yield triggers" for PC consultation. Among 931 eligible patients the prevalence of PC consultation was 5.6% while approximately 94% of patients had at least 1 trigger for PC consultation. The triggers that more often resulted in PC consultation included: symptom management needs (98%; n = 51) high-risk disease (86%; n = 45), poor prognosis (83%; n = 43), multiple lines of therapy (79%; n = 41) and a documented ICU admission (67%; n = 35). Our findings suggest that the high yield triggers for palliative care consultation that pediatric oncologists identify as important are not translating into practice; incorporating these triggers into a screening tool may be the next step to improve early PC integration.

Medicaid coverage for tobacco dependence treatment: Enrollee awareness and use.

Medicaid-insured adults smoke at twice the rate of privately insured adults. Insurance coverage for tobacco dependence treatments (TDTs) has been shown to increase quit attempts, but few published studies have measured enrollees' awareness of Medicaid coverage. We assessed awareness of Medicaid coverage for and use of TDTs among New York State (NYS) Medicaid-insured smokers and recent quitters. In July-August 2017, we conducted a probability-based online survey of Medicaid enrollees in NYS aged 18 to 65 in fee-for-service and managed care plans (n = 266; AAPOR 4RR = 22.5%). In 2017, we estimated descriptive statistics and used Adjusted Wald tests to assess differences in awareness and use of TDTs (p < 0.05). We used logistic regression to assess correlates of coverage awareness and use of TDTs. Most participants (94.3%) were aware of TDTs, but fewer were aware that Medicaid covers them (59.7%). Most participants believed TDTs are effective in helping smokers quit, although many also believed non-evidence-based methods are effective. Awareness of Medicaid coverage was associated with awareness of a Medicaid-related antitobacco television ad (p < 0.05), moderate nicotine dependence (p < 0.05), and believing that TDTs are effective (p < 0.01). Although awareness of Medicaid coverage for TDTs was found to be high, there remains room for improvement, even in a state that actively promotes these benefits. It is important for states to not only expand Medicaid coverage of TDTs but to also promote the benefits to improve the chances of quit success. Understanding Medicaid enrollees' awareness of and perceptions of covered TDTs can inform messaging to maximize utilization of evidence-based benefits.

Who purchases nonprescription syringes? Characterizing customers of the Expanded Syringe Access Program (ESAP).

This study represents the first attempt in the USA to survey pharmacy nonprescription syringe customers at their point of purchase. We surveyed 62 individuals purchasing nonprescription syringes in seven pharmacies located in NYC and Albany, NY, USA. Three quarters of respondents purchased for illicit use, and 36% purchased for medical use, with differences found by race and gender. Half got their syringes from pharmacies "most of the time." Half had ever been refused a syringe purchase in a NYS pharmacy, with men, Blacks, and Hispanics reporting higher levels of refusals than women or whites. Two thirds reported syringe reuse but very few reported sharing. While approximately one quarter safely obtained and disposed of syringes "most of the time," two thirds used both safe and unsafe methods. Pharmacy-based syringe access programs are essential in areas not served by syringe exchanges.

Expanding access to sterile syringes through pharmacies: assessment of New York's Expanded Syringe Access Program.

OBJECTIVES: To investigate the evolution of pharmacist practices, attitudes, and experiences with the Expanded Syringe Access Program (ESAP), which permits over-the-counter sale of syringes by registered pharmacies in New York State. DESIGN: Longitudinal study. SETTING: New York State in 2002 and 2006. PARTICIPANTS: 506 (2002) and 682 (2006) managing pharmacists (response rates approximately 70%) at ESAP-registered pharmacies (n = 346 in both years). INTERVENTION: Mailed surveys (2002 and 2006). MAIN OUTCOME MEASURES: Pharmacist practices, attitudes, and experiences with ESAP over time. RESULTS: Approximately 75% of pharmacists reported that ESAP had facilitated timely/emergency access to syringes, and more than 90% in each year reported no problems or very few problems administering ESAP. The practice of placing additional requirements on the sale of syringes decreased from 2002 (51.4%) to 2006 (45.1%), while a 55% increase in syringe sales was reported between 2002 (43.3/month) and 2006 (67.1/month). The sale of sharps containers also increased between 2002 (85.2%) and 2006 (92.8%). Community independent pharmacies and those located outside New York City generally expressed more favorable attitudes and experiences with ESAP, although these differences decreased over time. CONCLUSION: Pharmacy-based syringe access is a viable harm-reduction alternative in the fight against blood-borne diseases, with ESAP now equaling the number of syringes being distributed by syringe exchange programs in New York State. Continued education/training is necessary to increase participation in ESAP and to further reduce barriers to ESAP use.

How Low-Income Smokers in New York Access Cheaper Cigarettes.

PURPOSE: To understand the tobacco acquisition practices of low-income smokers in New York State in light of high cigarette prices due to high cigarette taxes. DESIGN: Eight focus groups with low-income smokers were conducted in spring 2015 and 2016 (n = 74). SETTING: New York City (NYC) and Buffalo, New York. PARTICIPANTS: Low-income adults aged 18 to 65 who smoke cigarettes regularly. METHOD: Qualitative analysis of focus group transcripts that explored differences and similarities by region. We used the interview guide-which covered the process of acquiring cigarettes and the impact of cigarette prices-as a framework for analysis to generate themes and subthemes (deductive coding). We also generated themes and subthemes that emerged during focus group discussions (inductive coding). RESULTS: Some smokers in Western New York have switched to untaxed cigarettes from Native American reservations, whereas low-income smokers in NYC described convenient sources of bootlegged cigarettes (packs or loosies) in their local neighborhood stores, through acquaintances, or on the street. Familiarity with the retailer was key to accessing bootlegged cigarettes from retailers. CONCLUSIONS: Smokers in this study could access cheaper cigarettes, which discouraged quit attempts and allowed them to continue smoking. The availability of lower priced cigarettes may attenuate public health efforts aimed at reducing smoking prevalence through price and tax increases.

Dentist and hygienist smoking cessation counseling and awareness of Medicaid benefits.

OBJECTIVES: Integrating smoking cessation interventions into dental care is an efficient way to intervene with smokers. This study of dentists and dental hygienists who provide dental care to Medicaid-insured patients explores awareness of Medicaid smoking cessation benefits, awareness of Quitline resources, beliefs about perceived role in providing tobacco interventions, and behaviors around clinical intervention. METHODS: In 2015, we conducted a survey of dentists and hygienists who serve Medicaid patients in New York State. RESULTS: A total of 182 dentists and 92 hygienists completed the survey. Ninety percent reported that helping patients quit smoking is part of their role, while 51.0 percent reported feeling confident in their ability to counsel a patient about quitting. Most respondents (73.4 percent) asked patients about tobacco use, 83.7 percent advised smokers to quit, and 49.1 percent assisted with quit attempts. We found that 26.7 percent were aware that dentist smoking cessation counseling is covered by Medicaid, and 15.5 percent were aware that hygienist smoking cessation counseling is covered. A total of 38.9 percent were aware of any Medicaid coverage for smoking cessation. Awareness of the Medicaid smoking cessation benefit was associated with intervention behaviors of asking and assisting. CONCLUSIONS: Most dental care providers see smoking cessation as part of their role, but few are aware of the Medicaid benefits available to help patients. Expanding coverage of and promoting Medicaid benefits for smoking cessation have the potential to increase the reach and quality of smoking cessation interventions for Medicaid-insured smokers, a population disproportionately affected by tobacco use.