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PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.

PURPOSE In 2016, Kaiser Permanente Northern California began regionalizing testicular cancer care using population-based tumor board review. This mixed methods evaluation describes implementation outcomes and learnings. METHODS We conducted in-depth interviews with key stakeholders, administered surveys to local oncologists and urologists, and used clinical data to evaluate changes in care delivery during 2015-2018. RESULTS An average of 135 patients with testicular cancer were diagnosed each year. Interviews with 16 key stakeholders provided several insights. Implementation resulted in high levels of satisfaction, was dependent on leadership and staff at various levels, and required technology and consulting solutions aligned to user agreements and clinical workflows. Of 123 local oncologists and urologists who completed surveys, 97% understood why care was regionalized and 89% agreed that tumor board review improved treatment decisions. Among 177 patients with stage I seminoma, the percentage appropriately observed rather than treated with adjuvant chemotherapy or radiation therapy increased from 48% (95% CI, 35 to 62) in 2015 to 87% (75 to 99) in 2018. Review altered care based on pathology and radiology re-review in 14.5 % of cases. CONCLUSION Regionalization was feasible and effective.

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.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.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.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.

INTRODUCTION: Video visits have created new opportunities to enhance access to care, but limited information exists on strategies medical groups can employ to facilitate video visit use by higher-risk patients. Our objective was to identify generalizable strategies to facilitate successful delivery of video visits by systems serving highly diverse patient populations. METHODS: The authors conducted a qualitative study of physicians and staff members in a large group practice with 4.5 million patients with diverse race and ethnicity and socioeconomic status. Semi-structured interviews were conducted between January 2021 and April 2021, with key informants identified via purposive and snowball sampling. Video-recorded interviews were transcribed and analyzed using thematic analysis to identify major themes and subthemes. RESULTS: The 42 key informants included regional and medical center leaders, primary care physicians, service managers, and medical assistants. Participants described clinical leadership in technology and multidisciplinary collaboration as crucial to sustained video care adoption. Strategies to facilitate real-time learning included local innovation, rapid communication channels, and psychological safety. The organization offered broad access to frequently updated data reports to help managers and practitioners understand processes, measure performance, and share best practices. Medical assistants and physicians developed new approaches to empathize, tailor interactions with patients, and overcome psychological and technical barriers to connecting via video. CONCLUSIONS: Key strategies for sustained video care adoption included clinical leadership articulating its purpose, multidisciplinary collaboration, local innovation, effective data use, empathy, and personalized care. These findings provide a model for how health care systems can foster robust adoption of technologies to serve diverse populations.

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. Supplementary Information The online version contains supplementary material available at 10.1007/s11606-020-06481-y.

Background Most people with opioid use disorder (OUD) never receive treatment. Medication treatment of OUD in primary care is recommended as an approach to increase access to care. The PRimary Care Opioid Use Disorders treatment (PROUD) trial tests whether implementation of a collaborative care model (Massachusetts Model) using a nurse care manager (NCM) to support medication treatment of OUD in primary care increases OUD treatment and improves outcomes. Specifically, it tests whether implementation of collaborative care, compared to usual primary care, increases the number of days of medication for OUD (implementation objective) and reduces acute health care utilization (effectiveness objective). The protocol for the PROUD trial is presented here. Methods PROUD is a hybrid type III cluster-randomized implementation trial in six health care systems. The intervention consists of three implementation strategies: salary for a full-time NCM, training and technical assistance for the NCM, and requiring that three primary care providers have DEA waivers to prescribe buprenorphine. Within each health system, two primary care clinics are randomized: one to the intervention and one to Usual Primary Care. The sample includes all patients age 16–90 who visited the randomized primary care clinics from 3 years before to 2 years after randomization (anticipated to be > 170,000). Quantitative data are derived from existing health system administrative data, electronic medical records, and/or health insurance claims (“electronic health records,” [EHRs]). Anonymous staff surveys, stakeholder debriefs, and observations from site visits, trainings and technical assistance provide qualitative data to assess barriers and facilitators to implementation. The outcome for the implementation objective (primary outcome) is a clinic-level measure of the number of patient days of medication treatment of OUD over the 2 years post-randomization. The patient-level outcome for the effectiveness objective (secondary outcome) is days of acute care utilization [e.g. urgent care, emergency department (ED) and/or hospitalizations] over 2 years post-randomization among patients with documented OUD prior to randomization. Discussion The PROUD trial provides information for clinical leaders and policy makers regarding potential benefits for patients and health systems of a collaborative care model for management of OUD in primary care, tested in real-world diverse primary care settings. Trial registration # NCT03407638 (February 28, 2018); CTN-0074 https://clinicaltrials.gov/ct2/show/NCT03407638?term=CTN-0074&draw=2&rank=1

Objective Develop and implement a prescription opioid registry in 10 diverse health systems across the US and describe trends in prescribed opioids between 2012 and 2018. Materials and Methods Using electronic health record and claims data, we identified patients who had an outpatient fill for any prescription opioid, and/or an opioid use disorder diagnosis, between January 1, 2012 and December 31, 2018. The registry contains distributed files of prescription opioids, benzodiazepines and other select medications, opioid antagonists, clinical diagnoses, procedures, health services utilization, and health plan membership. Rates of outpatient opioid fills over the study period, standardized to health system demographic distributions, are described by age, gender, and race/ethnicity among members without cancer. Results The registry includes 6 249 710 patients and over 40 million outpatient opioid fills. For the combined registry population, opioid fills declined from a high of 0.718 per member-year in 2013 to 0.478 in 2018, and morphine milligram equivalents (MMEs) per fill declined from 985 MMEs per fill in 2012 to 758 MMEs in 2018. MMEs per member declined from 692 MMEs per member in 2012 to 362 MMEs per member in 2018. Conclusion This study established a population-based opioid registry across 10 diverse health systems that can be used to address questions related to opioid use. Initial analyses showed large reductions in overall opioid use per member among the combined health systems. The registry will be used in future studies to answer a broad range of other critical public health issues relating to prescription opioid use.

ImportanceAs rates of prenatal cannabis use increase and cannabis legalization spreads across the US, studies are needed to understand the potential impacts of legalization from the perspectives of pregnant individuals who use cannabis.ObjectiveTo characterize pregnant individuals’ perspectives on legalization of cannabis for adult use in California (effective in 2018) in relation to prenatal cannabis use behaviors and beliefs.Design, Setting, and ParticipantsThis qualitative study was conducted in Kaiser Permanente Northern California, a large health care system with universal screening for self-reported cannabis use at entrance to prenatal care. Eighteen semistructured focus groups were conducted from November 17 to December 17, 2021, using a secure video conferencing platform with Black and White pregnant participants who self-reported cannabis use during early pregnancy. Data were analyzed from March to June 2022.Main Outcomes and MeasuresVideo-recorded interviews were transcribed and analyzed using thematic analysis to identify major themes and subthemes.ResultsAmong 53 participants (mean [SD] age, 30.3 [5.2] years), 23 (43%) identified as non-Hispanic Black and 30 (57%) identified as non-Hispanic White; 16 participants (30%) reported continued cannabis use at the time of recruitment. Major themes regarding the perceived impact of legalization included easier access (via retailers and delivery), greater acceptance (including reduced stigma and more discussions about prenatal cannabis use with health care practitioners), and trust in cannabis retailers (including safety and effectiveness of diverse products sold and perceptions of cannabis retailer employees as knowledgeable, nonjudgmental, and caring). Responses were mixed about whether retailer marketing and advertising were associated with prenatal cannabis use and whether legalization resulted in reduced concerns about Child Protective Services involvement.Conclusion and RelevanceThe findings of this qualitative study suggest pregnant individuals perceive cannabis legalization as having reduced barriers to prenatal cannabis use and that legalization has created challenges and opportunities for supporting the health of pregnant individuals. The results of this qualitative study highlight key areas that can be further explored in future educational materials, public health campaigns, and policy adaptations to address increasing rates of prenatal cannabis use.

252 Background: Goals of care conversations (GOCC) are a complex part of patient-focused care. Current understanding of GOCC content is limited to post-hoc patient satisfaction surveys and focus groups evaluating end-of-life advance care planning physician-patient interactions, and documentation. We investigated patient goals and values through standardized GOCC documentation by oncologists in patients with advanced cancer. Methods: This pilot qualitative analysis of patient goals and values included all adult patients > 18 years with advanced recurrent or stage IV cancer seen at Kaiser Permanente San Francisco with an oncologist documented GOCC between 1/1/2022 to 5/14/22. Our team developed a templated GOCC automated phrase (Smartphrase) within our electronic medical record (EMR), with a selection tab that included a listing of common patient goals and values and an option to add free text. Team members reviewed each patient’s initial GOCC content was reviewed for frequently occurring themes consistent with goals and values. Results: A total of 178 patients had EMR documented GOCC, with a mean of 1.8 GOCC per patient. These patients were 51% (n = 94) female, with a median age of 68.5 years old. The population was racially diverse with 46% identifying as White, 32% Asian/Pacific Islander, 13% Black, 8% Hispanic/Latino, and 1% Other. The most common cancer types included breast (19%, n = 34), lower GI (16%, n = 29), and thoracic (14%, n = 25). Family members were present in 35% (n = 63) of GOCC. Table summarizes thematically grouped goals and values. Conclusions: Our findings highlight the importance of GOCC in routine oncology visits. Our standardized documentation tool for GOCC prompted medical oncologists to identify what matters most to patients with advanced or recurrent cancer regarding their values and goals related to care and quality of life. Among the wide range of responses, we identified that the most important goals and values to our patients include avoiding pain and suffering, physical independence, and living as long as possible. In contrast, patients rarely identified comfort-only treatment as a priority. This tool can guide goal-concordant care at initial onset of the cancer journey and be revisited as these conversations evolve over time. Future investigation is needed to understand how GOCC goals and values identified early impact patient satisfaction, change over time, influence treatment decisions, and potentially lead to an evolution in standard for goal-concordant care.[Table: see text]

Key Points Question What do adolescents and young adults with cancer, their families, and clinicians find important in end-of-life care? Findings This qualitative study of interviews with 23 adolescents and young adults, 28 family caregivers, and 29 clinicians identified 7 distinct end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Although some domains reflected existing quality domains for adults, some domains were unique or had distinct manifestations for this young population. Meaning The priority domains identified in this study as relevant to adolescents and young adults with advanced cancer may be used for quality measurement., Importance End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participants This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure Stage IV or recurrent cancer. Main Outcomes and Measures Care priorities. Results Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care., This qualitative study assesses patient, family, and clinician perspectives on priority domains for end-of-life care for adolescents and young adults with cancer.

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 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.

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 conditions (OR = 1.18, 95% CI = 1.10–1.26) 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.

Background: Bladder cancer patients who undergo cystectomy and urinary diversion face functional and quality-of-life challenges. Little is known about these patients’ experiences during decision-making, surgery, and recovery, or how they vary by treatment setting. Objective: To learn about patients’ experiences with treatment choice, surgical care, and recovery across health settings. Understanding patient experiences is essential to closing care gaps and developing patient-reported measures. Methods: We conducted focus groups with cystectomy patients and family caregivers at a large comprehensive health care system (N = 32 patients) and an NCI-designated comprehensive cancer center (N = 25 patients and 5 caregivers). Using standard qualitative methods, we identified themes that are not well-represented in existing research. Results: Across both systems, patients described variable experiences in decision-making about their cystectomy and urinary diversion. Some felt overwhelmed by information; others felt poorly informed. Many found self-care equipment challenging; many felt they knew little about what to expect regarding chemotherapy, recovery, and transitioning home. At times, health care personnel could not help manage patients’ ostomies or catheterization equipment. Our study also contributes a grounded theoretical framework for describing meaningful domains of patient experience with cystectomy and urinary diversion. We identified a common trajectory that includes decision-making, surgery and post-operative recovery, mastery of self-care, and reintegration. Conclusions: Patients with radical cystectomy and urinary diversion report a wide variety of experiences not captured by quantitative measures. These findings demonstrate that many cystectomy patients could benefit from additional post-operative support. We offer a framework to measure patient-centered domains in future research.

Adults diagnosed with type 2 diabetes (T2D) at a younger age are at increased risk for poor outcomes. We examined how family history of diabetes shaped the experiences and self-management perspectives of younger-onset individuals newly diagnosed with T2D. We conducted six focus groups between Nov 2017 and May 2018. Participants (n=41) were members of an integrated healthcare delivery system, had been diagnosed with T2D during the prior two years, and were 21-44 years old at the time of diagnosis. Each group met twice for 60-90 minutes, two weeks apart. Groups were led by an experienced facilitator, audio-recorded, transcribed verbatim, and coded by two reviewers using thematic analysis. The average age of participants was 38.4 years (±5.8 years); 20 were women, 10 self-identified as Latinx, 12 as Black, 12 as White and 7 as multiple or other races. Over 65% had a family history of T2D. Having a family member with T2D facilitated self-management in several ways. First, personal familiarity with T2D and related lifestyle changes, as well as advice from older relatives, led individuals to feel that they were capable of modifying behaviors and made adjusting to the diagnosis easier. In addition, family members with T2D served as both positive and negative role models that motivated individuals to adapt relatives’ health-promoting behaviors and take steps to avoid adverse outcomes. Conversely, for some, the perception that T2D diagnosis was inevitable was a barrier to initial self-care. Perceived lack of control over developing T2D due to family history of the disease led to feelings of self-blame and futility regarding self-management efforts. Our results highlight the importance of recognizing how familial experiences impact patients’ ability to navigate a new T2D diagnosis. Proactively addressing perceived barriers to and facilitators of self-management in the context of family T2D history may aid in efforts to educate and support high-risk, younger patients establish a trajectory towards improved health. Disclosure M. A. Blatchins: None. K. Xu: None. A. Altschuler: None. R. W. Grant: None. A. Gopalan: None. Funding National Institute of Diabetes and Digestive and Kidney Diseases (K23DK116968); Kaiser Permanente Northern California

Purpose: We studied adoption of an innovative laparoscopic technique for pediatric inguinal hernia repair by pediatric surgeons and pediatric urologists following dissemination of evidence for its ...

e13612 Background: Use of electronic Patient Reported Outcomes (ePRO) tools in the routine care of cancer patients remains challenging despite data showing that they can improve resource utilization and patient outcomes. Patients with head and neck cancer during intensive therapy with radiation therapy (RT) may particularly benefit from interventions focused on early symptom management. Methods: 34 patients with head and neck cancer were enrolled in an implementation study and received ePROs integrated within the electronic medical record (EMR) weekly during radiation therapy (RT) within a large integrated health care delivery system. ePROs consisted of the FACT G7 and FACT-HN. After completion of each survey on the patient portal, a radiation oncology RN documented any abnormal findings and subsequent interventions using a standardized format within the EMR. If patients did not have access to the patient portal or had language barriers, they could complete ePROs with a translator by phone or video. Results: Between January and December of 2021, 34 patients with head and neck cancer receiving curative RT were enrolled. The median age 65 years (range 46-84). 74% of patients were male. 59% were white, 26% Asian/PI, 5% Black, and 5% Hispanic. The most common primary cancer sites were: oropharynx (32%), nasopharynx (24%), larynx (18%), oral cavity (9%). 65% of patients received concurrent chemotherapy with RT and 35% received RT alone. 97.4% of patients had access to the online portal. The total number of surveys completed was 194 with a median of 7 per patient (range 1-8). There was a total of 887 abnormal findings reported and 887 documented and corresponding interventions resulting in a 100% intervention rate. Over the course of RT the mean number of abnormal findings increased from 2.26 at baseline (n = 34) to 6.27 at week 7 (n = 24), P < 0.0001. Hospitalizations and Emergency Department (ED) visit data were collected during the study and up to 30 days from last day of RT. There was a total of 2 hospitalizations and 8 ED visits. Conclusions: ePROs integrated within the patient portal and EMR are feasible during RT for patients with head and neck cancer within a large integrated health care system. The use of ePROs integrated within the patient portal and EMR can lead to a high rate of intervention. The increasing number of abnormal findings on ePRO during intensive treatment for head and neck cancer is consistent with known patterns of toxicity and confirm the value of studying methods for improving quality of life in this patient population.[Table: see text]

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.

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. 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. 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. 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.

This 8-week single-arm pilot trial within Kaiser Permanente Northern California tested the feasibility of conducting a mobile app/online-based mindfulness intervention for cancer patients undergoing chemotherapy and their caregivers. Participants were cancer patients with ≥8 weeks of remaining chemotherapy and their informal caregivers, where neither had a regular meditation practice. Participants were given access to a commercially available mindfulness program, Headspace™, via smartphone or computer and were asked to practice meditation using the program for 10–20 min daily. Data were collected on depression, anxiety, sleep, fatigue, quality of life at baseline and post-intervention using validated instruments. Qualitative telephone interviews gathered data regarding participants’ experience with the intervention. Nineteen patients (68%) and 9 caregivers (60%) completed the study. Approximately 40% of the patients had stage 3 or 4 cancer, and 30% were males and non-whites. Among them, 20 (71%) practiced meditation using the app > 50% of the days during the 8-week study period, and 60% of those individuals practiced > 70% of the days. Preliminary before-after comparison data suggested reduction in levels of distress and improvement in quality of life. In qualitative interviews, participants reported ease in use of the mindfulness program and appreciation for the convenience of accessing the program any time. Our results suggest that an app/online-based mindfulness intervention is feasible and well-accepted by cancer patients and their caregivers within an integrated healthcare system.

Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups.The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors.This was an observational study with a cross-sectional survey.The study included members of Kaiser Permanente Northern California and Northwest health plans.A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy.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.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 (p0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001).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.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).

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.

Aims To evaluate the effectiveness of automated symptom and side effect monitoring on quality of life among individuals with symptomatic diabetic peripheral neuropathy. Methods We conducted a pragmatic, cluster randomized controlled trial (July 2014 to July 2016) within a large healthcare system. We randomized 1834 primary care physicians and prospectively recruited from their lists 1270 individuals with neuropathy who were newly prescribed medications for their symptoms. Intervention participants received automated telephone-based symptom and side effect monitoring with physician feedback over 6 months. The control group received usual care plus three non-interactive diabetes educational calls. Our primary outcomes were quality of life (EQ-5D) and select symptoms (e.g. pain) measured 4-8 weeks after starting medication and again 8 months after baseline. Process outcomes included receiving a clinically effective dose and communication between individuals with neuropathy and their primary care provider over 12 months. Interviewers collecting outcome data were blinded to intervention assignment. Results Some 1252 participants completed the baseline measures [mean age (sd): 67 (11.7), 53% female, 57% white, 8% Asian, 13% black, 20% Hispanic]. In total, 1179 participants (93%) completed follow-up (619 control, 560 intervention). Quality of life scores (intervention: 0.658 ± 0.094; control: 0.653 ± 0.092) and symptom severity were similar at baseline. The intervention had no effect on primary [EQ-5D: -0.002 (95% CI -0.01, 0.01), P = 0.623; pain: 0.295 (-0.75, 1.34), P = 0.579; sleep disruption: 0.342 (-0.18, 0.86), P = 0.196; lower extremity functioning: -0.079 (-1.27, 1.11), P = 0.896; depression: -0.462 (-1.24, 0.32); P = 0.247] or process outcomes. Conclusions Automated telephone monitoring and feedback alone were not effective at improving quality of life or symptoms for people with symptomatic diabetic peripheral neuropathy. Trial registration ClinicalTrials.gov (NCT02056431).

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 ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11606-018-4756-4) contains supplementary material, which is available to authorized users.

Background Choosing which issues to discuss in the limited time available during primary care visits is an important task for complex patients with chronic conditions. Design, setting, and participants We conducted sequential interviews with complex patients (n = 40) and their primary care physicians (n = 17) from 3 different health systems to investigate how patients and physicians prepare for visits, how visit agendas are determined, and how discussion priorities are established during time-limited visits. Key results Visit flow and alignment were enhanced when both patients and physicians were effectively prepared before the visit, when the patient brought up highest-priority items first, the physician and patient worked together at the beginning of the visit to establish the visit agenda, and other team members contributed to agenda setting. A range of factors were identified that undermined the ability of patient and physicians to establish an efficient working agenda: the most prominent were time pressure and short visit lengths, but also included differing visit expectations, patient hesitancy to bring up embarrassing concerns, electronic medical record/documentation requirements, differences balancing current symptoms versus future medical risk, nonactionable items, differing philosophies about medications and lifestyle interventions, and difficulty by patients in prioritizing their top concerns. Conclusions Primary care patients and their physicians adopt a range of different strategies to address the time constraints during visits. The primary factor that supported well-aligned visits was the ability for patients and physicians to proactively negotiate the visit agenda at the beginning of the visit. Efforts to optimize care within time-constrained systems should focus on helping patients more effectively prepare for visits. Physicians should ask for the patient's agenda early, explain visit parameters, establish a reasonable number of concerns that can be discussed, and collaborate on a plan to deal with concerns that cannot be addressed during the visit.

Objective Multiple patient-reported outcomes (PROs) have been used to assess symptoms among patients with Diabetic Peripheral Neuropathy (DPN). However, there is little consistent application of measures in clinical or research settings. Our goal was to identify and compare patient reported outcome measures (PROs) specifically evaluated in neuropathy populations. Methods Literature search, summary, and qualitative comparison of PROs validated in neuropathy populations. Results We identified 12 studies of PROs evaluated in neuropathy populations that included DPN patients. Two assessed sleep quality, 5 assessed painful symptoms, and 5 assessed quality of life. The number of items per measure ranged from one to 97, and the number of domains ranged from one to 18. All had adequate internal consistency (Chronbach’s Alpha > 0.70). There was mild to moderate standardization of domains across measures and only a few instruments used common comparators. The spectrum of DPN symptoms addressed included: sensory symptoms, autonomic symptoms, and function, beliefs, role participation, sleep quality, and perceptions of illness. Conclusions There remains a need for a gold standard for DPN symptom assessment. Few existing instruments are adequately validated and the domains assessed are inconsistent. Current instrument selection should depend on the clinical and social context of the assessment.

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.

The cost to build and to maintain traditional registries for many dire, complex, low-frequency conditions is prohibitive. The authors used accessible technology to develop a platform that would generate miniregistries (small, routinely updated datasets) for surveillance, to identify patients who were missing elected utilization and to influence clinicians to change practices to improve care. The platform, tested in 5 medical specialty departments, enabled the specialists to rapidly and effectively communicate clinical questions, knowledge of disease, clinical workflows, and improve opportunities. Each miniregistry required 1 to 2 hours of collaboration by a specialist. Turnaround was 1 to 14 days.

CONTEXT Rectal cancer and its treatment impair survivors' productivity. OBJECTIVE To assess determinants of market and nonmarket employment, job search, volunteering, and homemaking among survivors five years or longer after diagnosis. DESIGN We mailed questionnaires to 1063 survivors who were members of Kaiser Permanente (Northern California, Northwest) during 2010 and 2011. MAIN OUTCOME MEASURES Productive activities, functional health status, and bowel management at the time of the survey. RESULTS Response rate was 60.5% (577/953). Higher comorbidity burdens were associated with lower productivity for men and women rectal cancer survivors. Productive survivors were younger and had lower disease stage and age at diagnosis, higher household income and educational attainment, and fewer comorbidity burdens and workplace adjustments than did nonproductive survivors (p < 0.05 each; 2-sided). Productive rectal cancer survivors were evenly split by sex. CONCLUSION Staying productive is associated with better mental health for rectal cancer survivors. Rectal cancer survivors with multiple chronic conditions, higher disease stage, lower productive activities, and older age need better access to medical care and closer monitoring of the quality of their care, including self-care. To capture the full extent of the involvement of survivors in all types of productive activities, research should routinely include measures of employment, searching for employment, homemaking, and volunteering. Counting market and nonmarket productive activities is innovative and recognizes the continuum of contributions survivors make to families and society. Health care systems should routinely monitor rectal cancer survivors' medical care access, comorbidities, health-related quality of life, and productive activities.

Examination of reliability and validity of a specialized health-related quality of life questionnaire for rectal cancer (RC) survivors (≥5 years post-diagnosis). We mailed 1,063 Kaiser Permanente (KP) RC survivors (313 ostomy and 750 anastomosis) a questionnaire containing the Modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O), SF-12v2, Duke–UNC Functional Social Support Questionnaire (FSSQ), and Memorial Sloan-Kettering Cancer Center Bowel Function Index (BFI). We adapted certain BFI items for use by subjects with intestinal ostomies. We evaluated reliability for all instruments with inter-item correlations and Cronbach’s alpha. We assessed construct validity only for the BFI in the ostomy group, because such use has not been reported. The overall response rate was 60.5 % (577 respondents/953 eligible). Compared with non-responders, participants were on average 2 years younger and more likely non-Hispanic white, resided in educationally non-deprived areas, and had KP membership through a group. The mCOH-QOL-O, SF-12, and FSSQ were found to be highly reliable for RC survivors. In the ostomy group, BFI Urgency/Soilage and Dietary subscales were found to be reliable, but Frequency was not. Factor analysis supported the construct of Urgency/Soilage and Dietary subscales in the ostomy group, although one item had a moderate correlation with all three factors. The BFI also demonstrated good concurrent validity with other instruments in the ostomy group. With possible exception of the BFI Frequency subscale in populations with ostomies, components of our survey can be used for the entire population of RC survivors, no matter whether they received anastomosis or ostomy.

Colorectal cancer (CRC) is the third most common cancer in the United States. For some CRC patients, cancer treatment involves creating a permanent or temporary intestinal ostomy. Having an ostomy often results in complex social and physical concerns-including unpredictable and at times publicly noticeable bowel output. In this article, we discuss findings from 30 in-depth interviews with female CRC survivors with ostomies in the western United States. We highlight how having an ostomy disrupts culturally sanctioned practices of continence that mark the attainment of full-adult personhood. We discuss how survivors reclaim a sense of full personhood after ostomy surgery through a process of realignment that entails both learning how to manage ostomy equipment to conceal bowel activity and reappraising their illness and suffering. We suggest that the anthropological categories of personhood and personhood realignment be incorporated into research and interventions aimed at increasing support among cancer survivors living with bodily impairments.

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.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.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.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.

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.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.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.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.

Importance The increasing use of electronic communications has enhanced access to physicians for patients and clinical staff. Primary care physicians (PCPs) have anecdotally identified electronic inbox management as a new source of work-related stress. Objectives To describe PCPs’ experiences managing their electronic inboxes and to characterize the array of management strategies developed by individual physicians and practice groups. Design, Setting, and Participants This qualitative study was conducted in 8 medical centers of a large group practice with more than 4 million patients in diverse settings and a mature electronic health record. The group encourages patients to use portal secure messaging to enhance access to their physicians and the care experience. Semistructured interviews were conducted with 24 internists and family medicine physicians identified via snowball sampling. Interviews were conducted July through November 2018. Data analysis was conducted between November 2018 and April 2019. Main Outcomes and Measures Audio recorded interviews were transcribed and analyzed using thematic analysis to identify major themes and subthemes. Results The 24 participants (12 women [50.0%]; mean [SD] age, 45.5 [6.5] years), including 9 department chiefs and 15 PCPs, had a mean (SD) of 16.8 (7.8) years since medical school graduation. Participants described substantial changes in medical practice due to electronic communication, including perceived patient expectations to receive rapid responses to portal secure messages. They described portal secure messaging as useful for building relationships with patients, but also reported that electronic message management has created new stressors, including erosion of work-life boundaries and anxiety associated with unlimited inbox volume. Individual PCPs used a diverse array of strategies, including multitasking during and outside work and delegating to medical assistants. Chiefs described group-level strategies, including reserving clinic time for inbox management, coverage systems for vacation and sick days, physician-to-physician training, and interdisciplinary teams to share messaging work. Conclusions and Relevance Individual physicians and local practice groups have developed a wide array of strategies for electronic inbox management. The volume of electronic messages and PCPs’ perceptions that patients expect rapid responses have created new stressors in primary care practice. Medical groups and health systems can support PCPs by facilitating knowledge transfer among physicians about inbox management strategies and further developing team structures for inbox coverage.

Purpose: To assess feasibility and preliminary efficacy of a mobile/online-based (mHealth) mindfulness intervention for cancer patients and their caregivers to reduce distress and improve quality of life (QoL). Material and Methods: Two-arm randomized controlled trial within Kaiser Permanente Northern California targeting cancer patients who received chemotherapy and their informal caregivers. The intervention group received a commercially available mindfulness program for 8 weeks. The wait-list control group received usual care. We assessed feasibility using retention and adherence rates and obtained participant-reported data on distress, QoL, sleep, mindfulness, and posttraumatic growth before and immediately after the intervention. Results: Ninety-seven patients (median age 59 years; female 69%; 65% whites) and 31 caregivers (median age 63 years; female 58%; 77% whites) were randomized. Among randomized participants, 74% of the patients and 84% of the caregivers completed the study. Among those in the intervention arm who initiated the mindfulness program, 65% practiced at least 50% of the days during the intervention period. We observed significantly greater improvement in QoL among patients in the intervention arm compared with controls. Caregivers in the intervention group experienced increased mindfulness compared with controls. Participants appreciated the convenience of the intervention and the mindfulness skills they obtained from the program. Conclusion: We demonstrated the feasibility of conducting a randomized trial of an mHealth mindfulness intervention for cancer patients and their informal caregivers. Results from fully powered efficacy trials would inform the potential for clinicians to use this scalable intervention to help improve QoL of those affected by cancer and their caregivers.

Objective Spiritual well-being (SpWB) is integral to health-related quality of life. The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We analyzed the SpWB of CRC survivors with ostomies. Methods Two-hundred-eighty-three long-term (≥5 years) CRC survivors with permanent ostomies completed the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O) questionnaire. An open-ended question elicited respondents' greatest challenge in living with an ostomy. We used content analysis to identify SpWB responses and develop themes. We analyzed responses on the three-item SpWB sub-scale. Results Open-ended responses from 52% of participants contained SpWB content. Fifteen unique SpWB themes were identified. Sixty percent of individuals expressed positive themes such as “positive attitude”, “I am fortunate”, “appreciate life more”, and “strength through religious faith”. Negative themes, expressed by only 29% of respondents, included “struggling to cope”, “not feeling ‘normal’ ”, and “loss”. Fifty-five percent of respondents expressed ambivalent themes including “learning acceptance”, “an ostomy is the price for survival”, “reason to be around despite suffering”, and “continuing to cope despite challenges”. The majority (64%) had a high SpWB sub-scale score. Conclusions Although CRC survivors with ostomies infrequently mentioned negative SpWB themes as a major challenge, ambivalent themes were common. SpWB themes were often mentioned as a source of resilience or part of the struggle to adapt to an altered body after cancer surgery. Interventions to improve the quality of life of cancer survivors should contain program elements designed to address SpWB that support personal meaning, inner peace, inter connectedness, and belonging. Copyright © 2013 John Wiley & Sons, Ltd.

CONTEXT Cancer patients' participation in social, recreational, and civic activities is strongly associated with quality of life (QOL), but these activities are not well integrated into cancer survivorship research or interventions. OBJECTIVE Test the hypothesis that for long-term (≥ 5 years) survivors of rectal cancer, clinical factors (type of surgery and bowel function) are associated with long-term participation in activities and that participation in activities is associated with long-term QOL. DESIGN Observational study with longitudinal and cross-sectional components. MAIN OUTCOME MEASURES Participation in activities and QOL. Tumor registry records were used to identify patients and obtain clinical data; surveys assessed participation and QOL. Using general linear models, we analyzed participation in activities in relation to type of surgery and bowel function after adjustment for potential confounders. We analyzed overall QOL relative to participation in activities after adjustment. RESULTS A total of 567 rectal cancer survivors completed a mailed questionnaire. Overall response rate was 61%. The type of operation (p < 0.0001), receipt of radiation therapy (p = 0.002), and bowel function (p < 0.0001) were associated with participation in activities. Participation in activities was the strongest predictor of QOL (p < 0.0001), explaining 20% of the variance (R2) in QOL, with all other variables together accounting for another 18% of the variance. CONCLUSION The importance of participation in activities on rectal cancer survivors' QOL is underappreciated. We recommend revising QOL instruments used in cancer care and research to include questions about participation in activities. Interventions should address maintenance of preferred activities and adoption of new, fulfilling activities.

Objective The purpose of this study was to examine how patients with diabetes and their primary care physicians identify and discuss visit priorities prior to and during visits. Methods We conducted a qualitative study involving patients with diabetes (4 focus groups, n = 29) and primary care physicians (6 provider practice meeting discussions, n = 67). Results Four key themes related to prioritization were identified: 1) the value of identifying visit priorities before the visit; 2) challenges to negotiating priorities during the time-limited visit; 3) the importance of “non-medical” priorities; and 4) the need for strategies to help patients prepare for visits. Both patients and physicians felt that identifying a concise list of key priorities in advance of the visit could help establish collaborative visit agendas and treatment plans. Conclusions Identifying and communicating mutually agreed upon priorities for discussion is a key challenge for time-limited primary care visits. Practice implications Communication between primary care physicians and their patients with diabetes could be improved by strategies that help patients identify their top visit priorities before the visit.