Evaluation of a Novel Question Prompt List in Pediatric Surgical Oncology.

INTRODUCTION: Parents of children with cancer describe interactions with clinicians as emotionally distressing. Patient engagement in treatment discussions decreases decisional conflict and improves decision quality which may limit such distress. We have shown that parents prefer to engage surgeons by asking questions, but parents may not know what to ask. Question Prompt Lists (QPLs), structured lists of questions designed to help patients ask important questions, have not been studied in pediatric surgery. We developed a QPL designed to empower parents to ask meaningful questions during pediatric surgical oncology discussions. We conducted a mixed methods analysis to assess the acceptability, appropriateness, and feasibility of using the QPL. METHODS: Key stakeholders at an academic children's hospital participated in focus groups to discuss the QPL. Focus groups were recorded and transcribed. Participants were surveyed regarding QPL acceptability, appropriateness, and feasibility. Thematic content analysis of transcripts was performed. RESULTS: Four parents, five nurses, five nurse practitioners, five oncologists, and four surgeons participated. Seven key themes were identified: (1) QPL as a tool of empowerment; (2) stick to the surgical details; (3) QPLs can impact discussion quality; (4) time consuming, but not overly disruptive; (5) parental emotion may impact QPL use; (6) provide QPLs prior to surgical consultation in both print and digital formats; and (7) expansion of QPLs to other disciplines. Over 70% of participants agreed that the QPL was acceptable, appropriate, and feasible. CONCLUSIONS: Our novel QPL is acceptable, appropriate, and feasible to use with parents of pediatric surgical oncology patients.

Empowering Parents of Pediatric Surgical Oncology Patients Through Collaborative Engagement with Surgeons.

BACKGROUND: Ninety percent of parents of pediatric oncology patients report distressing, emotionally burdensome healthcare interactions. Assuring supportive, informative treatment discussions may limit parental distress. Here, we interview parents of pediatric surgical oncology patients to better understand parental preferences for surgical counseling. METHODS: We interviewed 10 parents of children who underwent solid tumor resection at a university-based, tertiary children's hospital regarding their preferences for surgical discussions. Thematic content analysis of interview transcripts was performed using deductive and inductive methods. RESULTS: Three main themes were identified: (1) the emotional burden of a pediatric cancer diagnosis; (2) complexities of treatment discussions; (3) collaborative engagement between parents and surgeons. Within the collaborative engagement theme, there were four sub-themes: (1) variable informational needs; (2) parents as advocates; (3) parents as gatekeepers of information delivery to their children, family, friends, and community; (4) parental receptivity to structured guidance to support treatment discussions. Two cross-cutting themes were identified: (1) perception that no treatment decision needed to be made regarding surgery and (2) reliance on diverse support resources. CONCLUSIONS: Parents feel discussions with surgeons promote informed involvement in their child's care, but they recognize that there may be few decisions to make regarding surgery. Even when parents perceive that there are there are no decisions to make, they prioritize asking questions to advocate for their children. The emotional burden of a cancer diagnosis often prevents parents from knowing what questions to ask. Merging this data with our prior pediatric surgeon interviews will facilitate development of a novel decision support tool that can empower parents to ask meaningful questions. LEVEL OF EVIDENCE: III.

"Reading the room:" A qualitative analysis of pediatric surgeons' approach to clinical counseling.

BACKGROUND: In our prior analysis of parental preferences for discussions with pediatric surgeons, we identified that parents prefer more guidance from surgeons when discussing cancer surgery, emergency surgery, or surgery for infants, and they prefer to engage surgeons by asking questions. In this study, we investigate surgeon preferences for decision making discussions in pediatric surgery. METHODS: We conducted a thematic content analysis of interviews of pediatric surgeons regarding their preferences for discussing surgery with parents. Board certified/board eligible pediatric surgeons who had been in practice for at least one year and spoke English were eligible. Fifteen surgeons were invited, and twelve 30-minute semi-structured interviews were completed (80%). Interviews were recorded and transcribed. Thematic content analysis was performed using deductive and inductive methods. RESULTS: Data saturation was achieved after 12 interviews [6 women (50%), median years in practice 6.25, 10 in academic practice (83%), 8 from Midwest (67%)]. 5 themes emerged: (1) Collaboration to promote parental engagement; (2) "Cancer is distinct but not unique;" (3) "Read the room:" tailoring discussions to specific parental needs; (4) Perceived role of the surgeon; (5) Limited experience with decision support tools in pediatric surgery. CONCLUSIONS: Pediatric surgeons prefer a collaborative approach to counseling that engages parents through education. They prioritize tailoring discussions to meet parental needs. Few have utilized decision support tools, however most expressed interest. Insight gained from our work will guide development of a decision support tool that empowers parental participation in counseling for pediatric surgery. LEVEL OF EVIDENCE: III.

Post-treatment head and neck cancer survivors' approaches to self-management: A qualitative study.

PURPOSE: Post-treatment head and neck cancer (HNC) survivors contend with distinct, long-term challenges related to cancer treatments that impact their day-to-day lives. Alongside follow-up cancer care, they also must be responsible for the daily management of often intrusive physical and psychological symptoms, as well as maintaining their health and a lifestyle to promote their well-being. The purpose of this study was to identify HNC survivors' approaches toward engagement in self-management activities. METHODS: Post-treatment HNC survivors (N=22) participated in the study through purposeful sampling. Participants were eligible if they 1) had a history of upper aerodigestive tract cancer; 2) completed their most recent primary treatment (i.e. chemotherapy, radiation, and surgery) more than eighteen months prior and had no evidence of HNC, and 3) could speak in English. A semi-structured interview was used. Data was analyzed using content analysis. RESULTS: We identified three approaches that survivors took towards self-management activities: taking charge, living with it, and engaging as needed. Our results showed that taking charge is when survivors take an active role in evaluating their health and taking action subsequently; as needed represents engaging in self-management as necessary; and living with it reflects adapting to the symptoms and side effects without managing them. CONCLUSIONS: We propose self-management approaches as a novel mechanism to understand the relationship between survivors' characteristics and health preferences and their self-management. It is important for clinicians to highlight the variation in individuals 'self-management approaches as they work to identify tailored patient-centered strategies that compliment specific patient needs.

Why men with a low-risk prostate cancer select and stay on active surveillance: A qualitative study.

OBJECTIVE: Active surveillance (AS) is an increasingly utilized strategy for monitoring men with low-risk prostate cancer (PCa) that allows them to defer active treatment (AT) in the absence of cancer progression. Studies have explored reasons for selecting AS and for then switching to AT, but less is known about men's experiences being on AS. We interviewed men to determine the clinical and psychological factors associated with selecting and adhering to AS protocols. METHODS: We conducted semi-structured interviews with men with a low-risk PCa at two academic medical centers. Subjects had either been on AS for ≥ 1 year or had opted for AT after a period of AS. We used an iterative, content-driven approach to analyze the interviews and to identify themes. RESULTS: We enrolled 21 subjects, mean age 70.4 years, 3 racial/ethnic minorities, and 16 still on AS. Men recognized the favorable prognosis of their cancer (some had sought second opinions when initially offered AT), valued avoiding treatment complications, were reassured that close monitoring would identify progression early enough to be successfully treated, and trusted their urologists. Although men reported feeling anxious around the time of surveillance testing, those who switched to AT did so based only on evidence of cancer progression. CONCLUSIONS: Our selected sample was comfortable being on AS because they understood and valued the rationale for this approach. However, this highlights the importance of ensuring that men newly diagnosed with a low-risk PCa are provided sufficient information about prognosis and treatment options to make informed decisions.

Medical tourism services available to residents of the United States.

BACKGROUND: There are growing reports of United States (US) residents traveling overseas for medical care, but empirical data about medical tourism are limited. OBJECTIVE: To characterize the businesses and business practices of entities promoting medical tourism and the types and costs of procedures being offered. DESIGN, PARTICIPANTS, AND OUTCOMES: Between June and August 2008, we conducted a telephone survey of all businesses engaged in facilitating overseas medical travel for US residents. We collected information from each company including: the number of employees; number of patients referred overseas; medical records security processes; destinations to which patients were referred; treatments offered; treatment costs; and whether patient outcomes were collected. RESULTS: We identified 63 medical tourism companies and 45 completed our survey (71%). Companies had a mean of 9.8 employees and had referred an average of 285 patients overseas (a total of approximately 13,500 patients). 35 (79%) companies reported requiring accreditation of foreign providers, 22 (50%) collected patient outcome data, but only 17 (39%) described formal medical records security policies. The most common destinations were India (23 companies, 55%), Costa Rica (14, 33%), and Thailand (12, 29%). The most common types of care included orthopedics (32 companies, 73%), cardiac care (23, 52%), and cosmetic surgery (29, 66%). 20 companies (44%) offered treatments not approved for use in the US--most commonly stem cell therapy. Average costs for common procedures, CABG ($18,600) and knee arthroplasty ($10,800), were similar to previous reports. CONCLUSIONS: The number of Americans traveling overseas for medical care with assistance from medical tourism companies is relatively small. Attention to medical records security and patient outcomes is variable and cost-savings are dependent on US prices. That said, overseas medical care can be a reasonable alternative for price sensitive patients in need of relatively common, elective medical procedures.

Why don't out-of-treatment individuals enter methadone treatment programmes?

BACKGROUND: Despite the proven effectiveness of methadone treatment, the majority of heroin-dependent individuals are out-of-treatment. METHODS: Twenty-six opioid-dependent adults who met the criteria for methadone maintenance who were neither seeking methadone treatment at the time of study enrollment, nor had participated in such treatment during the past 12 months, were recruited from the streets of Baltimore, Maryland through targeted sampling. Ethnographic interviews were conducted to ascertain participants' attitudes toward methadone treatment and their reasons for not seeking treatment. RESULTS: Barriers to treatment entry included: waiting lists, lack of money or health insurance, and requirements to possess a photo identification card. For some participants, beliefs about methadone such as real or rumored side effects, fear of withdrawal from methadone during an incarceration, or disinterest in adhering to the structure of treatment programmes kept them from applying. In addition, other participants were not willing to commit to indefinite "maintenance" but would have accepted shorter time-limited methadone treatment. CONCLUSION: Barriers to treatment entry could be overcome by an infusion of public financial support to expand treatment access, which would reduce or eliminate waiting lists, waive treatment-related fees, and/or provide health insurance coverage for treatment. Treatment programmes could overcome some of the barriers by waiving their photo I.D. requirements, permitting time-limited treatment with the option to extend such treatment upon request, and working with corrections agencies to ensure continued methadone treatment upon incarceration.

Premature discharge from methadone treatment: patient perspectives.

Longer retention in drug abuse treatment is associated with better patient outcomes, and research indicates the first 12 months of methadone treatment are critical to patient success. Nevertheless, large-scale multisite longitudinal studies over the past three decades indicate that the majority of patients drop out during the first year of methadone treatment. Through an examination of 42 qualitative interviews with patients prematurely discharged from six methadone treatment programs in Baltimore, this study highlights factors patients describe as contributing to their reasons for being discharged within the first 12 months of the treatment. The two most consistent themes are program-related factors and incarceration. The former factors are richly described through patients' words and underscore the ways in which patients' perceptions of control exerted by the program and by the medication and misunderstandings of program structure can lead to premature discharge. Patients' reasons for discharge were compared to counselors' reasons as indicated in discharge summary forms. An analysis of the patterns of agreement and disagreement are presented. Patient-centered program and policy implications are discussed.

A before-after implementation trial of smoking cessation guidelines in hospitalized veterans.

BACKGROUND: Although most hospitalized smokers receive some form of cessation counseling during hospitalization, few receive outpatient cessation counseling and/or pharmacotherapy following discharge, which are key factors associated with long-term cessation. US Department of Veterans Affairs (VA) hospitals are challenged to find resources to implement and maintain the kind of high intensity cessation programs that have been shown to be effective in research studies. Few studies have applied the Chronic Care Model (CCM) to improve inpatient smoking cessation. SPECIFIC OBJECTIVES: The primary objective of this protocol is to determine the effect of a nurse-initiated intervention, which couples low-intensity inpatient counseling with sustained proactive telephone counseling, on smoking abstinence in hospitalized patients. Key secondary aims are to determine the impact of the intervention on staff nurses' attitudes toward providing smoking cessation counseling; to identify barriers and facilitators to implementation of smoking cessation guidelines in VA hospitals; and to determine the short-term cost-effectiveness of implementing the intervention. DESIGN: Pre-post study design in four VA hospitals. PARTICIPANTS: Hospitalized patients, aged 18 or older, who smoke at least one cigarette per day. INTERVENTION: The intervention will include: nurse training in delivery of bedside cessation counseling, electronic medical record tools (to streamline nursing assessment and documentation, to facilitate prescription of pharmacotherapy), computerized referral of motivated inpatients for proactive telephone counseling, and use of internal nursing facilitators to provide coaching to staff nurses practicing in non-critical care inpatient units. OUTCOMES: The primary endpoint is seven-day point prevalence abstinence at six months following hospital admission and prolonged abstinence after a one-month grace period. To compare abstinence rates during the intervention and baseline periods, we will use random effects logistic regression models, which take the clustered nature of the data within nurses and hospitals into account. We will assess attitudes of staff nurses toward cessation counseling by questionnaire and will identify barriers and facilitators to implementation by using clinician focus groups. To determine the short-term incremental cost per quitter from the perspective of the VA health care system, we will calculate cessation-related costs incurred during the initial hospitalization and six-month follow-up period. TRIAL NUMBER: NCT00816036.

Incarceration and opioid withdrawal: the experiences of methadone patients and out-of-treatment heroin users.

Both heroin-addicted individuals and methadone maintenance patients are likely to face untreated opioid withdrawal while incarcerated. Limited research exists concerning the withdrawal experiences of addicted inmates and their impact on individuals' attitudes and plans concerning drug abuse treatment. In the present study, 53 opioid dependent adults (32 in methadone treatment and 21 out of treatment) were interviewed in an ethnographic investigation of withdrawal experiences during incarceration. When treatment for opioid withdrawal was unavailable, detoxification experiences were usually described as negative and were often associated with a variety of unhealthy behaviors designed to relieve withdrawal symptoms. Negative methadone withdrawal experiences also negatively influenced participants' receptivity to seeking methadone treatment upon release. A minority of participants took a positive view of their withdrawal experience and saw it as an opportunity to detox from heroin or discontinue methadone. Findings support the importance of providing appropriate opioid detoxification and/or maintenance therapy to opioid-dependent inmates.

Gender Differences Among In- and Out-of-Treatment Opioid-Addicted Individuals.

OBJECTIVE: Gender differences were explored among 355 in- and out-of-treatment opioid-addicted adults in Baltimore. METHODS: Addiction Severity Index and other variables were compared among: 1) in-treatment women vs. out-of-treatment women; 2) out-of-treatment: women vs. men; and, 3) in-treatment: women vs. men. RESULTS: Analysis indicated that in-treatment and out-of-treatment women worked less and used more cocaine than their male counterparts (ps < .01). Moreover, out-of-treatment women used heroin and cocaine more often, spent more money on drugs, earned more illegal income, and had fewer treatments than in-treatment women (ps < or = .01). CONCLUSIONS: Findings indicate greater severity of drug and employment problems of opioid-addicted women and underline the need for gender-specific drug-treatment services.

A heroin epidemic at the intersection of histories: the 1960s epidemic among African Americans in Baltimore.

In the drug field the fundamental epidemiological question-why illicit drug use, here, now, among these people-has still not been adequately answered. Drawing on the work of colleagues in medical anthropology, we attempt to move closer to an answer by developing a "trend theory." In this article we analyze a single case: the increase in heroin use and addiction among African Americans in the City of Baltimore in the 1960s. We found that the two most important historical processes behind the epidemic were (1) a changing distribution/supply system and (2) the mix of hope and despair that was part of the early civil rights movement.

A tale of two policies: the French connection, methadone, and heroin epidemics.

The law enforcement and treatment policies of the Nixon administration are often credited with ending the epidemic of heroin addiction that rose in America's cities in the 1960s. In this article it is argued that although the interventions did in fact cause a major change in heroin distribution and use, the epidemic did not end in any simple way. The decline in heroin and increase in methadone that resulted from the Nixon policies lead to a shift for many addicts in both clinical and street settings from one narcotic to another. The temporary shortage of heroin that resulted from law enforcement was quickly compensated for with methadone, as well as with new distribution systems from Southeast Asia and Mexico. In the end, the interventions caused a change in an enduring "heroin system," a change that left that system in a stronger form in terms of supply and in a situation of continuing growth in terms of the number of addicts.