Association of initial opioid prescription duration and an opioid refill by pain diagnosis: Evidence from outpatient settings in ten US health systems.

OBJECTIVE: The Centers for Disease Control and Prevention's 2022 Clinical Practice Guideline for Prescribing Opioids for Pain cautioned that inflexible opioid prescription duration limits may harm patients. Information about the relationship between initial opioid prescription duration and a subsequent refill could inform prescribing policies and practices to optimize patient outcomes. We assessed the association between initial opioid duration and an opioid refill prescription. METHODS: We conducted a retrospective cohort study of adults ≥19 years of age in 10 US health systems between 2013 and 2018 from outpatient care with a diagnosis for back pain without radiculopathy, back pain with radiculopathy, neck pain, joint pain, tendonitis/bursitis, mild musculoskeletal pain, severe musculoskeletal pain, urinary calculus, or headache. Generalized additive models were used to estimate the association between opioid days' supply and a refill prescription. RESULTS: Overall, 220,797 patients were prescribed opioid analgesics upon an outpatient visit for pain. Nearly a quarter (23.5%) of the cohort received an opioid refill prescription during follow-up. The likelihood of a refill generally increased with initial duration for most pain diagnoses. About 1 to 3 fewer patients would receive a refill within 3 months for every 100 patients initially prescribed 3 vs. 7 days of opioids for most pain diagnoses. The lowest likelihood of refill was for a 1-day supply for all pain diagnoses, except for severe musculoskeletal pain (9 days' supply) and headache (3-4 days' supply). CONCLUSIONS: Long-term prescription opioid use increased modestly with initial opioid prescription duration for most but not all pain diagnoses examined.

Prescription Opioid Dose Reductions and Potential Adverse Events: a Multi-site Observational Cohort Study in Diverse US Health Systems.

BACKGROUND: In response to the opioid crisis in the United States, population-level prescribing of opioids has been decreasing; there are concerns, however, that dose reductions are related to potential adverse events. OBJECTIVE: Examine associations between opioid dose reductions and risk of 1-month potential adverse events (emergency department (ED) visits, opioid overdose, benzodiazepine prescription fill, all-cause mortality). DESIGN: This observational cohort study used electronic health record and claims data from eight United States health systems in a prescription opioid registry (Clinical Trials Network-0084). All opioid fills (excluding buprenorphine) between 1/1/2012 and 12/31/2018 were used to identify baseline periods with mean morphine milligram equivalents daily dose of  ≥ 50 during six consecutive months. PATIENTS: We identified 60,040 non-cancer patients with  ≥ one 2-month dose reduction period (600,234 unique dose reduction periods). MAIN MEASURES: Analyses examined associations between dose reduction levels (1- < 15%, 15- < 30%, 30- < 100%, 100% over 2 months) and potential adverse events in the month following a dose reduction using logistic regression analysis, adjusting for patient characteristics. KEY RESULTS: Overall, dose reduction periods involved mean reductions of 18.7%. Compared to reductions of 1- < 15%, dose reductions of 30- < 100% were associated with higher odds of ED visits (OR 1.14, 95% CI 1.10, 1.17), opioid overdose (OR 1.41, 95% CI 1.09-1.81), and all-cause mortality (OR 1.39, 95% CI 1.16-1.67), but lower odds of a benzodiazepine fill (OR 0.83, 95% CI 0.81-0.85). Dose reductions of 15- < 30%, compared to 1- < 15%, were associated with higher odds of ED visits (OR 1.08, 95% CI 1.05-1.11) and lower odds of a benzodiazepine fill (OR 0.93, 95% CI 0.92-0.95), but were not associated with opioid overdose and all-cause mortality. CONCLUSIONS: Larger reductions for patients on opioid therapy may raise risk of potential adverse events in the month after reduction and should be carefully monitored.

What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer.

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. PATIENTS AND METHODS: This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. RESULTS: Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. CONCLUSIONS: AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.

Conversations for providers caring for patients with rectal cancer: Comparison of long-term patient-centered outcomes for patients with low rectal cancer facing ostomy or sphincter-sparing surgery.

For some patients with low rectal cancer, ostomy (with elimination into a pouch) may be the only realistic surgical option. However, some patients have a choice between ostomy and sphincter-sparing surgery. Sphincter-sparing surgery has been preferred over ostomy because it offers preservation of normal bowel function. However, this surgery can cause incontinence and bowel dysfunction. Increasingly, it has become evident that certain patients who are eligible for sphincter-sparing surgery may not be well served by the surgery, and construction of an ostomy may be better. No validated assessment tool or decision aid has been published to help newly diagnosed patients decide between the two surgeries or to help physicians elicit long-term surgical outcomes. Furthermore, comparison of long-term outcomes and late effects after the two surgeries has not been synthesized. Therefore, this systematic review summarizes controlled studies that compared long-term survivorship outcomes between these two surgical groups. The goals are: 1) to improve understanding and shared decision-making among surgeons, oncologists, primary care providers, patients, and caregivers; 2) to increase the patient's participation in the decision; 3) to alert the primary care provider to patient challenges that could be addressed by provider attention and intervention; and 4) ultimately, to improve patients' long-term quality of life. This report includes discussion points for health care providers to use with their patients during initial discussions of ostomy and sphincter-sparing surgery as well as questions to ask during follow-up examinations to ascertain any long-term challenges facing the patient. CA Cancer J Clin 2016;66:387-397. © 2016 American Cancer Society.

"The simple life experiences that every other human gets": Desire for normalcy among adolescents and young adults with advanced cancer.

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end-of-life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care. PROCEDURE: This was a secondary analysis of a qualitative study that aimed to identify priority domains for end-of-life care. Content analysis of semi-structured interviews among AYAs aged 12-39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy. RESULTS: Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short-term and long-term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care. CONCLUSIONS: AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.

Mental health and substance use screening in HIV primary care before and during the early COVID-19 pandemic.

BACKGROUND: Mental health and substance use disorders disproportionately affect people with HIV (PWH), and may have been exacerbated during COVID-19. The Promoting Access to Care Engagement (PACE) trial was designed to assess the effectiveness of electronic screening for mental health and substance use in HIV primary care and enrolled PWH from October 2018 to July 2020. Our objective here was to compare screening rates and results for PWH before (October 2018 - February 2020) and early in the COVID-19 pandemic (March-July 2020). METHODS: Adult (≥ 18 years) PWH from 3 large HIV primary care clinics in a US-based integrated healthcare system were offered electronic screening online or via in-clinic tablet computer every 6 months. Screening completion and results (for depression, suicidal ideation, anxiety, and substance use) were analyzed using logistic regression with generalized estimating equations to estimate prevalence ratios (PR) before and after the start of the regional COVID-19 shelter-in-place orders on March 17, 2020. Models adjusted for demographics (age, sex, race/ethnicity), HIV risk factors (men who have sex with men, injection drug use, heterosexual, other), medical center, and modality of screening completion (online or tablet). We conducted qualitative interviews with providers participating in the intervention to evaluate how the pandemic impacted patient care. RESULTS: Of 8,954 eligible visits, 3,904 completed screenings (420 during COVID, 3,484 pre-COVID), with lower overall completion rates during COVID (38% vs. 44%). Patients completing screening during COVID were more likely to be White (63% vs. 55%), male (94% vs. 90%), and MSM (80% vs., 75%). Adjusted PRs comparing COVID and pre-COVID (reference) were 0.70 (95% CI), 0.92 (95% CI), and 0.54 (95% CI) for tobacco use, any substance use, and suicidal ideation, respectively. No significant differences were found by era for depression, anxiety, alcohol, or cannabis use. These results were in contrast to provider-reported impressions of increases in substance use and mental health symptoms. CONCLUSION: Findings suggest PWH had modest declines in screening rates early in the COVID-19 pandemic which may have been affected by the shift to telemedicine. There was no evidence that mental health problems and substance use increased for PWH in primary care. TRIAL REGISTRATION: NCT03217058 (First registration date: 7/13/2017); https://clinicaltrials.gov/ct2/show/NCT03217058.

Disclosure of New Type 2 Diabetes Diagnoses to Younger Adults: a Qualitative Study.

BACKGROUND: Adults diagnosed with type 2 diabetes at a younger age are at increased risk for poor outcomes. Yet, little is known about the early experiences of these individuals, starting with communication of the diagnosis. Addressing this knowledge gap is important as this initial interaction may shape subsequent disease-related perceptions and self-management. OBJECTIVE: We examined diagnosis disclosure experiences and initial reactions among younger adults with newly diagnosed type 2 diabetes. PARTICIPANTS: Purposive sample of adult members of Kaiser Permanente Northern California, an integrated healthcare delivery system, diagnosed with type 2 diabetes before age 45 years. APPROACH: We conducted six focus groups between November 2017 and May 2018. Transcribed audio recordings were coded by two coders using thematic analysis. KEY RESULTS: Participants (n = 41) were 38.4 (± 5.8) years of age; 10 self-identified as Latinx, 12 as Black, 12 as White, and 7 as multiple or other races. We identified variation in diagnosis disclosure experiences, centered on four key domains: (1) participants' sense of preparedness for diagnosis (ranging from expectant to surprised); (2) disclosure setting (including in-person, via phone, via secure message, or via review of results online); (3) perceived provider tone (from nonchalant, to overly fear-centered, to supportive); and (4) participants' emotional reactions to receiving the diagnosis (including acceptance, denial, guilt, and/or fear, rooted in personal and family experience). CONCLUSIONS: For younger adults, the experience of receiving a diabetes diagnosis varies greatly. Given the long-term consequences of inadequately managed diabetes and the need for early disease control, effective initial disclosure represents an opportunity to optimize initial care. Our results suggest several opportunities to improve the type 2 diabetes disclosure experience: (1) providing pre-test counseling, (2) identifying patient-preferred settings for receiving the news, and (3) developing initial care strategies that acknowledge and address the emotional distress triggered by this life-altering, chronic disease diagnosis.

Pilot pragmatic randomized trial of mHealth mindfulness-based intervention for advanced cancer patients and their informal caregivers.

OBJECTIVE: Assess the feasibility of conducting a cluster randomized controlled trial (RCT) comparing technology-delivered mindfulness-based intervention (MBI) programs against a waitlist control arm targeting advanced cancer patients and their informal caregivers. METHODS: Two-arm cluster RCT within Kaiser Permanente Northern California. We recruited patients with metastatic solid malignancies or hematological cancers and their informal caregivers. Intervention-group participants chose to use either a commercially available mindfulness app (10-20 min/day) or a webinar-based mindfulness course for 6 weeks. The waitlist control group received usual care. We assessed feasibility measures and obtained participant-reported data on quality of life (QoL; primary outcome) and distress outcomes (secondary) pre- and postintervention. RESULTS: A hundred and three patients (median age 67 years; 70% female; 81% White) and 39 caregivers (median age 66 years; 79% female; 69% White) were enrolled. Nearly all participants chose the mindfulness app over the webinar-based program. Among the participants in the intervention arm who chose the mobile-app program and completed the postintervention (6-week) survey, 21 (68%) patients and 7 (47%) caregivers practiced mindfulness at least 50% of the days during the 6-week study period. Seventy-four percent of intervention participants were "very" or "extremely" satisfied with the mindfulness program. We observed improvements in anxiety, QoL, and mindfulness among patients in the intervention arm compared to those in the control group. CONCLUSIONS: We demonstrated the feasibility of conducting a cluster RCT of mHealth MBI for advanced cancer patients and their caregivers. Such remote interventions can be helpful particularly during the COVID-19 pandemic.

Prompting Patients with Poorly Controlled Diabetes to Identify Visit Priorities Before Primary Care Visits: a Pragmatic Cluster Randomized Trial.

BACKGROUND: Most patients with diabetes do not meet all evidence-based goals of care, and many patients report poor communication and lack of involvement in decision-making during primary care visits. OBJECTIVE: To test the hypothesis that a "Pre-Visit Prioritization" secure email message could improve visit communication and glycemic control among patients with type 2 diabetes. DESIGN: We conducted a pragmatic, provider-randomized, multi-site clinical trial from March 2015 to October 2016 across 30 primary care practices within Kaiser Permanente Northern California (KPNC), a large integrated care delivery system. PARTICIPANTS: Eligible patients had at least 1 year of KPNC membership, type 2 diabetes with most recently measured hemoglobin A1c (HbA1c) > = 8.0%, and were registered users of the KPNC online patient portal. INTERVENTIONS: Patients in the intervention arm, upon booking an appointment, received a secure email through the KPNC online portal with a link to the EHR allowing them to submit their top one or two priorities prior to the visit. Control patients received usual care. MAIN MEASURES: Glycemic control; change in HbA1c 6 and 12 months after the initial visit; patient-reported outcomes related to patient-provider communication and patient care experiences. KEY RESULTS: During the study period, 1276 patients had at least one eligible visit. In post-visit surveys (n = 457), more intervention arm patients reported preparing questions for their visit (72% vs 63%, p = 0.048) and being given treatment choices to consider (81% vs 73%, p = 0.041). Patients in both arms had similar reductions in HbA1c over the 12-month study period (0.56% ± 1.45%), with no significant differences between arms. CONCLUSIONS: A "light touch" email-based pre-visit intervention resulted in improved measures of visit interaction but did not significantly improve glycemic control relative to usual care. Improving diabetes clinical outcomes through more effective primary care visits may require more intensive approaches to patient visit preparation. TRIAL REGISTRY: NCT02375932.

Factors associated with Healthcare Effectiveness Data and Information Set (HEDIS) alcohol and other drug measure performance in 2014-2015.

Background: Only 10% of patients with alcohol and other drug (AOD) disorders receive treatment. The AOD Initiation and Engagement in Treatment (AOD-IET) measure was added to the national Healthcare Effectiveness Data and Information Set (HEDIS) to improve access to care. This study identifies factors related to improving AOD-IET rates. Methods: We include data from 7 health systems with differing geographic, patient demographic, and organizational characteristics; all used a common Virtual Data Warehouse containing electronic health records and insurance claims data. Multilevel logistic regression models examined AOD-IET among adults (18+). Results: A total of 86,565 patients had an AOD diagnosis qualifying for the HEDIS denominator. The overall initiation rate was 27.9% with wide variation; the overall engagement rate was 11.5% and varied from 4.5% to 17.9%. Women versus men (odds ratio [OR] = 0.81, 95% confidence interval [CI] = 0.76-0.86); Hispanics (OR = 0.85, 95% CI = 0.79-0.91), black/African Americans (OR = 0.82, 95% CI = 0.75-0.90), and Asian Americans (OR = 0.83, 95% CI = 0.72-0.95) versus whites; and patients aged 65+ versus 18-29 (OR = 0.82, 95% CI = 0.74-0.90) had lower odds of initiation. Patients aged 30-49 versus 18-29 (OR = 1.11, 95% CI = 1.04-1.19) and those with prior psychiatric (OR = 1.26, 95% CI = 1.18-1.35) and medical (OR = 1.18, 95% CI = 1.10-1.26) conditions had higher odds of initiation. Identification in primary care versus other departments was related to lower odds of initiation (emergency department [ED]: OR = 1.55, 95% CI = 1.45-1.66; psychiatry/AOD treatment: OR = 3.58, 95% CI = 3.33-3.84; other outpatient: OR = 1.19, 95% CI = 1.06-1.32). Patients aged 30-49 versus 18-29 had higher odds of engagement (OR = 1.26, 95% CI = 1.10-1.43). Patients aged 65+ versus 18-29 (OR = 0.51, 95% CI = 0.43-0.62) and black/African Americans versus whites (OR = 0.64, 95% CI = 0.53-0.77) had lower odds. Those initiating treatment in psychiatry/AOD treatment versus primary care (OR = 7.02, 95% CI = 5.93-8.31) had higher odds of engagement; those in inpatient (OR = 0.40, 95% CI = 0.32-0.50) or other outpatient (OR = 0.73, 95% CI = 0.59-0.91) settings had lower odds. Discussion: Rates of initiation and engagement varied but were low. Findings identified age, race/ethnicity, co-occurring conditions, and department of identification as key factors associated with AOD-IET. Focusing on these could help programs develop interventions that facilitate AOD-IET for those less likely to receive care.

Predictors of Healthcare Effectiveness Data and Information Set (HEDIS) treatment initiation and engagement among patients with opioid use disorder across 7 health systems.

Background: The prevalence of opioid use disorder (OUD) has increased rapidly in the United States and improving treatment access is critical. Among patients with OUD, we examined factors associated with the Healthcare Effectiveness Data and Information Set (HEDIS) performance measures of alcohol and other drug (AOD) treatment initiation and engagement. Methods: Electronic health record and claims data between October 1, 2014, and August 15, 2015, from 7 health systems were used to identify patients (n = 11,490) with a new index OUD diagnosis (no AOD diagnosis prior <60 days) based on International Classification of Diseases (ICD)-9 codes. Multivariable generalized linear models with a logit link clustered on health system were used to examine the associations of patient demographic and clinical characteristics, and department of index diagnosis, with HEDIS measures of treatment initiation and engagement. Results: The prevalence of OUD among all AOD diagnoses varied across health systems, as did rates of AOD initiation (5.7%-21.6%) and engagement (7.6%-24.6%). Those diagnosed in the emergency department (adjusted odds ratio [aOR] = 1.58, 95% confidence interval [CI] = 1.27,1.97) or psychiatry/AOD treatment (aOR = 2.92, 95% CI = 2.47,3.46) were more likely to initiate treatment compared with primary care. Older patients were less likely to initiate (age 50-64 vs. age 18-29: aOR = 0.42, 95% CI = 0.35, 0.51; age 65+ vs. age 18-29: aOR = 0.34, 95% CI = 0.26, 0.43), as were women (aOR = 0.72, 95% CI = 0.62, 0.85). Patients diagnosed in psychiatry/AOD treatment (aOR = 2.67, 95% CI = 1.98, 3.60) compared with primary care were more likely to engage in treatment. Those identified in an inpatient setting (aOR = 0.19, 95% CI = 0.14, 0.27 vs. primary care), those with medical comorbidity (aOR = 0.70, 95% CI = 0.52, 0.95), and older patients (age 50-64 vs. 18-29: aOR = 0.64, 95% CI = 0.46, 0.88; age 65+ vs. 18-29: aOR = 0.36, 95% CI = 0.22, 0.57) were less likely to engage in treatment. Conclusions: Rates of initiation and engagement for OUD patients vary widely with noticeable room for improvement, particularly in this critical time of the opioid crisis. Targeting patient and system factors may improve health system performance, which is key to improving patient outcomes.

Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study.

PURPOSE: The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. METHODS: We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. RESULTS: Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. CONCLUSIONS: Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

Influence of Language and Culture in the Primary Care of Spanish-Speaking Latino Adults with Poorly Controlled Diabetes: A Qualitative Study.

Background: We examined the role of language and culture in the interactions between Spanish-speaking Latino patients with poorly controlled diabetes - a fast-growing population in the United States - and their primary care providers. Methods: We conducted four focus groups with 36 non-US born Spanish-speaking patients with elevated HbA1c. Participants were insured health plan members with either English-speaking (2 groups) or Spanish-speaking (2 groups) primary care providers. Moderated discussions focused on visit preparation, communication during visit, and role of other care team members. Key themes derived from these discussions were then linked to corresponding Latino cultural constructs. Results: Patients had a mean age of 57.9 (±11.2) years and last measured HbA1c was 8.6% (1.5%). Two communication-related themes (reluctance to switch providers and use of intermediaries) and two visit-related themes (provider-driven visit agendas and problem-based visits) emerged from our analyses. These themes reflected the cultural constructs of confianza (trust), familismo (family), respeto (deference), and simpatía (harmonious relationship). Trust in the patient-provider relationship led many participants to remain with English-speaking providers who treated them well. Patients with either language concordant and discordant providers reported reliance on family or other intermediaries to close communication gaps. Deference to physician expertise and authority led to visit expectations that it is the doctor's job to know what to ask and that visits were intended to address specific, often symptom-driven problems. Conclusions: Spanish-speaking Latino patients' cultural expectations play an important role in framing their primary care interactions. Recognizing culturally influenced visit expectations is an important step toward improving patient-provider communication.

Providers' Experiences with a Melanoma Web-Based Course: a Discussion on Barriers and Intentions.

Primary care visits provide an opportunity for skin examinations with the potential to reduce melanoma mortality. The INFORMED (INternet curriculum FOR Melanoma Early Detection) Group developed a Web-based curriculum to improve primary care providers' (PCPs') skin cancer detection skills. This study details feedback obtained from participant focus groups, including the feasibility of implementing in other PCP practices. Practicing PCPs at Henry Ford Health System and Kaiser Permanente Northern California completed the curriculum. Feedback sessions were conducted with standardized questions focusing on four domains: (1) overall impressions of the curriculum, (2) recommendations for improvement, (3) current skin examination practices, and (4) suggestions for increasing skin screening by PCPs. Discussions at each site were audio recorded, transcribed verbatim, and de-identified. Providers (N = 54) had a positive impression of the Web-based curriculum, with suggestions to provide offline teaching aids and request assistance. Despite having improved confidence in diagnosing malignant lesions, many providers felt a lack of confidence in performing the screening and time constraints affected their current practices, as did institutional constraints. Providers intended to increase discussion with patients about skin cancer. The accessibility, effectiveness, and popularity of the curriculum indicate potential for implementation in the primary care setting. Participating providers noted that institutional barriers remain which must be addressed for successful dissemination and implementation.

Demographic, Insurance, and Health Characteristics of Newly Enrolled HIV-Positive Patients After Implementation of the Affordable Care Act in California.

OBJECTIVES: To examine changes in HIV-positive patient enrollment in a large health care delivery system before and after key Affordable Care Act (ACA) provisions went into effect in 2014. METHODS: Analyses compared HIV-positive patients newly enrolled in Kaiser Permanente Northern California between January and June 2012 (n = 339) to those newly enrolled between January and June 2014 through the California insurance exchange or via other mechanisms (n = 549). RESULTS: After the ACA, the HIV-positive patient enrollment increased. These new enrollees were more likely to be male (93.6% vs 89.1%; P = .01), to be enrolled in high-deductible benefit plans (≥ $1000; 18.8% vs 5.5%; P = .01), and to have better HIV viral control (HIV RNA levels below limits of quantification 79.5% vs 73.6%; P = .05) compared with pre-ACA new enrollees. Among post-ACA new enrollees, there were more patients in the lowest and highest age groups. Post-ACA exchange enrollees (22%) were more likely to be male and to have high-deductible plans than those enrolled through other mechanisms. CONCLUSIONS: More men, higher deductibles, and better HIV viral control characterize newly enrolled HIV-positive patients after the ACA in California. PUBLIC HEALTH IMPLICATIONS: Evolving characteristics of HIV-positive enrollees may affect HIV policy, patient care needs, and service utilization.

Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey.

BACKGROUND: Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE: The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN: This was an observational study with a cross-sectional survey. SETTINGS: The study included members of Kaiser Permanente Northern California and Northwest health plans. PATIENTS: A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. MAIN OUTCOME MEASURES: The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. RESULTS: The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p < 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). LIMITATIONS: Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare-eligible population), and non-English-speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. CONCLUSIONS: Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).

The Diabetes Telephone Study: Design and challenges of a pragmatic cluster randomized trial to improve diabetic peripheral neuropathy treatment.

BACKGROUND: Challenges to effective pharmacologic management of symptomatic diabetic peripheral neuropathy include the limited effectiveness of available medicines, frequent side effects, and the need for ongoing symptom assessment and treatment titration for maximal effectiveness. We present here the rationale and implementation challenges of the Diabetes Telephone Study, a randomized trial designed to improve medication treatment, titration, and quality of life among patients with symptomatic diabetic peripheral neuropathy. METHODS: We implemented a pragmatic cluster randomized controlled trial to test the effectiveness of an automated interactive voice response tool designed to provide physicians with real-time patient-reported data about responses to newly prescribed diabetic peripheral neuropathy medicines. A total of 1834 primary care physicians treating patients in the diabetes registry at Kaiser Permanente Northern California were randomized into the intervention or control arm. In September 2014, we began identification and recruitment of patients assigned to physicians in the intervention group who receive three brief interactive calls every 2 months after a medication is prescribed to alleviate diabetic peripheral neuropathy symptoms. These calls provide patients with the opportunity to report on symptoms, side effects, self-titration of medication dose and overall satisfaction with treatment. We plan to compare changes in self-reported quality of life between the intervention group and patients in the control group who receive three non-interactive automated educational phone calls. RESULTS: Successful implementation of this clinical trial required robust stakeholder engagement to help tailor the intervention and to address pragmatic concerns such as provider time constraints. As of 27 October 2015, we had screened 2078 patients, 1447 of whom were eligible for participation. We consented and enrolled 1206 or 83% of those eligible. Among those enrolled, 53% are women and the mean age is 67 (standard deviation = 12) years. The racial ethnic make-up is 56% White, 8% Asian, 13% Black or African American, and 19% Hispanic or Latino. CONCLUSION: Innovative strategies are needed to guide improvements in healthcare delivery for patients with symptomatic diabetic peripheral neuropathy. This trial aims to assess whether real-time collection and clinical feedback of patient treatment experiences can reduce patient symptom burden. Implementation of a clinical trial closely involving clinical care required researchers to partner with clinicians. If successful, this intervention provides a critical information feedback loop that would optimize diabetic peripheral neuropathy medication titration through widely available interactive voice response technology.

Dietary and Behavioral Adjustments to Manage Bowel Dysfunction After Surgery in Long-Term Colorectal Cancer Survivors.

BACKGROUND: Bowel dysfunction is a known complication of colorectal cancer (CRC) surgery. Poor bowel control has a detrimental impact on survivors' health-related quality of life (HRQOL). This analysis describes the dietary and behavioral adjustments used by CRC survivors to manage bowel dysfunction and compares adjustments used by survivors with permanent ostomy to those with anastomosis. METHODS: This mixed-methods analysis included pooled data from several studies that assessed HRQOL in CRC survivors. In all studies, CRC survivors with or without permanent ostomies (N = 856) were surveyed using the City of Hope Quality of Life Colorectal Cancer tool. Dietary adjustments were compared by ostomy status and by overall HRQOL score (high vs. low). Qualitative data from 13 focus groups and 30 interviews were analyzed to explore specific strategies used by survivors to manage bowel dysfunction. RESULTS: CRC survivors made substantial, permanent dietary, and behavioral adjustments after surgery, regardless of ostomy status. Survivors who took longer after surgery to become comfortable with their diet or regain their appetite were more likely to report worse HRQOL. Adjustments to control bowel function were divided into four major strategies: dietary adjustments, behavioral adjustments, exercise, and medication use. CONCLUSIONS: CRC survivors struggled with unpredictable bowel function and may fail to find a set of management strategies to achieve regularity. Understanding the myriad adjustments used by CRC survivors may lead to evidence-based interventions to foster positive adjustments after surgery and through long-term survivorship.

Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies.

PURPOSE: While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving. We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services. METHODS: This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years postsurgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems. We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors' cancer and medical history. RESULTS: We classified families into a matrix of healthcare management resources (high vs. low) and survivors' healthcare needs (high vs. low). We found that patients' healthcare needs did not always correspond to their caregivers' management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in nonmarital relationships. CONCLUSIONS: As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors' well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment.

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies.

PURPOSE: The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies. METHODS: Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes. RESULTS: Health-care-related themes described CRC survivors' experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms. CONCLUSIONS: Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL. The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.