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1.
Obstet Gynecol ; 142(5): 1153-1161, 2023 11 01.
Article in English | MEDLINE | ID: mdl-37562055

ABSTRACT

OBJECTIVE: To understand pregnant patients' reasons for prenatal cannabis use and perceptions of safety, desired and undesirable health care experiences, and desired information about prenatal cannabis use and secondarily to understand racial differences in these perceptions and preferences. METHODS: We conducted a qualitative study including 18 semi-structured, race-concordant virtual focus groups with pregnant individuals who self-reported cannabis use at prenatal care entry in a large integrated health care system in Northern California from November 2021 to December 2021. The focus groups included semi-structured questions that were recorded, transcribed, and coded by the research team. Thematic analysis was used to analyze the data. RESULTS: Overall, 53 participants were included; 30 self-identified, as White and 23 self-identified as Black. Participants averaged 30.3 years of age (SD 5.2 years) and were on average at 20.9 weeks of gestation at study enrollment; 69.8% reported daily cannabis use, 24.5% reported weekly cannabis use, and 5.7% reported monthly or less cannabis use at entrance to prenatal care. Although some participants quit cannabis use in early pregnancy because of concerns about potential health risks, many perceived a lack of scientific evidence or believed that prenatal cannabis use was safe. Many preferred cannabis to over-the-counter or prescription medications for treating mood, morning sickness, pain, and sleep. Participants valued open interactions with obstetricians that acknowledged their motivations for use, and they desired information about potential risks through conversations and educational materials. White and Black participants' perspectives were generally similar, but a few Black participants uniquely described concerns about racial bias related to their prenatal cannabis use. CONCLUSION: Pregnant patients used cannabis to manage mood and medical symptoms, and many believed that prenatal cannabis use was safer than the use of prescription medications. Obstetrician-initiated, patient-centered conversations around prenatal cannabis use, advice to discontinue cannabis use during pregnancy, and exploration of willingness to switch to medically recommended interventions for pregnancy-related symptoms may benefit patients.


Subject(s)
Cannabis , Pregnancy , Female , Humans , Prenatal Care , Self Report , Qualitative Research , Focus Groups
2.
Perm J ; 27(3): 60-67, 2023 09 15.
Article in English | MEDLINE | ID: mdl-37635460

ABSTRACT

Purpose Use of electronic patient-reported outcome (ePRO) tools in routine oncology practice can be challenging despite evidence showing they can improve survival, improve patient and practitioner satisfaction, and reduce medical resource utilization. Head and neck cancer (HNC) patients receiving radiation therapy (RT) may be a group that would particularly benefit from interventions focused on early symptom management. Methods Patients undergoing definitive RT for HNC were enrolled in a feasibility study and received ePRO surveys integrated within the electronic medical record (EMR) on a weekly basis during RT. After completion of each ePRO survey, a radiation oncology registered nurse documented the findings and subsequent interventions within the EMR. Results Thirty-four patients with HNC who received curative RT at a single center were enrolled. The total number of surveys completed was 194 with a median of 7 surveys per patient (range 1-8). There was a total of 887 individual abnormal findings reported on the ePROs, and the authors found that all 887 had a corresponding documented intervention. Post-treatment practitioner questionnaires highlighted that ePROs were felt to be helpful for the care team in providing care to HNC patients. Conclusion For patients with HNC receiving RT, ePROs can be effectively utilized to address patient symptoms within an integrated health care system. Creating an infrastructure for the use of ePROs integrated within the EMR in routine care requires an approach that accounts for local workflows and buy-in from patients and the entire care team.


Subject(s)
Electronic Health Records , Head and Neck Neoplasms , Humans , Feasibility Studies , Head and Neck Neoplasms/radiotherapy , Patient Reported Outcome Measures , Electronics
3.
BMC Health Serv Res ; 23(1): 494, 2023 May 16.
Article in English | MEDLINE | ID: mdl-37194051

ABSTRACT

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.


Subject(s)
COVID-19 , HIV Infections , Sexual and Gender Minorities , Substance-Related Disorders , Adult , Humans , Male , COVID-19/diagnosis , COVID-19/epidemiology , HIV Infections/complications , HIV Infections/diagnosis , HIV Infections/epidemiology , Homosexuality, Male , Mental Health , Pandemics , Primary Health Care , Substance-Related Disorders/diagnosis , Substance-Related Disorders/epidemiology
4.
JCO Clin Cancer Inform ; 5: 187-193, 2021 02.
Article in English | MEDLINE | ID: mdl-33571000

ABSTRACT

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.


Subject(s)
Delivery of Health Care, Integrated , Seminoma , Testicular Neoplasms , Chemotherapy, Adjuvant , Humans , Male , Seminoma/drug therapy , Surveys and Questionnaires , Testicular Neoplasms/drug therapy , Testicular Neoplasms/therapy
5.
J Gen Intern Med ; 36(6): 1622-1628, 2021 06.
Article in English | MEDLINE | ID: mdl-33501523

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 2 , Adult , Child , Delivery of Health Care , Diabetes Mellitus, Type 2/diagnosis , Disclosure , Focus Groups , Humans , Middle Aged , Qualitative Research
6.
Perm J ; 26(1): 11-20, 2021 10 25.
Article in English | MEDLINE | ID: mdl-35609161

ABSTRACT

INTRODUCTION: Effective, equity-promoting interventions implemented by health care systems are needed to address health care disparities and population-level health disparities. We evaluated the impact of a clinical decision support tool to improve evidence-based thiazide diuretic prescribing among Black patients to address racial disparities in hypertension control. METHODS: We employed an interrupted time series design and qualitative interviews to evaluate the implementation of the tool. Our primary outcome measure was the monthly rate of thiazide use among eligible patients before and after implementation of the tool (January 2013-December 2016). We modeled month-to-month changes in thiazide use for Black and White patients, overall, and by sex and medical center racial composition. We conducted key informant interviews to identify modifiable facilitators and barriers to implementation of the tool across medical centers. RESULTS: Of the 318,720 patients, 15.5% were Black. We observed no change in thiazide use or blood pressure control following the implementation of the tool in either racial subgroup. There was a slight but statistically significant reduction (2.32 percentage points, p < 0.01) in thiazide use among Black patients following the removal the tool that was not observed among White patients. Factors affecting the tool's implementation included physician and pharmacist resistance to thiazide use and a lack of ongoing promotion of the tool. DISCUSSION: The clinical decision support tool was insufficient to change prescribing practices and improve blood pressure control among Black patients. CONCLUSIONS: Future interventions should consider physician attitudes about thiazide prescribing and the importance of multilevel approaches to address hypertension disparities.


Subject(s)
Decision Support Systems, Clinical , Delivery of Health Care, Integrated , Hypertension , Healthcare Disparities , Humans , Hypertension/drug therapy , Racial Groups , Thiazides
7.
Psychooncology ; 2020 Sep 26.
Article in English | MEDLINE | ID: mdl-32979294

ABSTRACT

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.

8.
Integr Cancer Ther ; 18: 1534735419850634, 2019.
Article in English | MEDLINE | ID: mdl-31092044

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Mindfulness/methods , Neoplasms/psychology , Adaptation, Psychological/physiology , Delivery of Health Care/methods , Feasibility Studies , Female , Humans , Male , Meditation/psychology , Middle Aged , Quality of Life/psychology , Stress, Psychological/psychology , Stress, Psychological/therapy , Surveys and Questionnaires , Telemedicine/methods , Treatment Outcome
9.
Bladder Cancer ; 5(1): 51-61, 2019 Jan 31.
Article in English | MEDLINE | ID: mdl-30854413

ABSTRACT

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.

10.
PLoS One ; 13(7): e0199423, 2018.
Article in English | MEDLINE | ID: mdl-30036361

ABSTRACT

A metastatic cancer diagnosis is associated with high levels of distress in patients and caregivers. Mindfulness interventions can reduce distress and improve quality of life in cancer patients. However, standard mindfulness training relies on in-person instruction, which is often not practical for either patients receiving chemotherapy or their caregivers. In the Being Present single arm pilot study, we designed and tested an 8-week audio-based mindfulness meditation program for patients with metastatic colorectal cancer receiving chemotherapy with or without a participating caregiver. The study accrued 33 of 74 (45%) eligible patients consenting together with 20 family caregivers (53 participants total) within nine months. Forty-one participants were evaluable (77%); 10 of 12 cases of attrition were attributable to hospitalization or death. Median participant age was 51 (range 21-78 years); 38% were men. Baseline levels of distress were similar in patients and caregivers. The top reasons for participation cited in pre-intervention interviews were to increase relaxation/calm, improve mood/emotions, and reduce stress/anxiety. In measures of adherence, 59% of responses to weekly texts asking: "Have you practiced today?" were "Yes" and 59% of interviewees reported practicing >50% of the time. Compared to baseline, post-intervention surveys demonstrated significantly reduced distress (p = 0.01) and anxiety (p = 0.03); as well as increased non-reactivity (p<0.01), and feeling at peace (p<0.01). Post-intervention qualitative interviews, where 71% of participants reported benefit, were consistent with quantitative findings. In the interviews, participants spontaneously described reduced stress/anxiety and increased relaxation/calm. Benefits appeared to be accentuated in patient-caregiver pairs as compared to unpaired patients. Seventy-nine percent of participants reported plans for continued practice after study completion. We conclude that the Being Present audio-based mindfulness meditation program is of interest to, feasible, and acceptable for patients with metastatic colorectal cancer and caregivers, with initial evidence of efficacy. These results will guide plans for a follow-up study. TRIAL REGISTRATION: ClinicalTrials.gov NCT02423720.


Subject(s)
Caregivers/psychology , Colorectal Neoplasms/psychology , Colorectal Neoplasms/therapy , Mindfulness , Adult , Aged , Colorectal Neoplasms/diagnosis , Feasibility Studies , Female , Focus Groups , Humans , Male , Middle Aged , Mindfulness/methods , Practice Patterns, Physicians' , Quality of Life , Stress, Psychological , Surveys and Questionnaires , Young Adult
12.
Support Care Cancer ; 26(2): 529-537, 2018 02.
Article in English | MEDLINE | ID: mdl-28844086

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Colorectal Neoplasms/therapy , Ostomy/psychology , Qualitative Research , Aged , Aged, 80 and over , Colorectal Neoplasms/psychology , Female , Humans , Male , Middle Aged , Quality of Life/psychology , Surveys and Questionnaires , Survivors/psychology
13.
J Acquir Immune Defic Syndr ; 73(5): e76-e82, 2016 Dec 15.
Article in English | MEDLINE | ID: mdl-27749602

ABSTRACT

OBJECTIVES: This study examined implementation of the Affordable Care Act (ACA) in relation to HIV-positive patient enrollment in an integrated health care system; as well as changes in new enrollee characteristics, benefit structure, and health care utilization after key ACA provisions went into effect in 2014. METHODS: This mixed-methods study was set in Kaiser Permanente Northern California (KPNC). Qualitative interviews with 29 KPNC leaders explored planning for ACA implementation. Quantitative analyses compared newly enrolled HIV-positive patients in KPNC between January and December 2012 ("pre-ACA," N = 661) with newly enrolled HIV-positive patients between January and December 2014 ("post-ACA," N = 880) on demographics; medical, psychiatric, and substance use disorder diagnoses; HIV clinical indicators; and type of health care utilization. RESULTS: Interviews found that ACA preparation focused on enrollment growth, staffing, competition among health plans, concern about cost sharing, and HIV pre-exposure prophylaxis (PrEP) services. Quantitative analyses found that post-ACA HIV-positive patient enrollment grew. New enrollees in 2014 were more likely than 2012 enrollees to be enrolled in high-deductible plans (P < 0.01) or through Medicaid (P < 0.01), and marginally more likely to have better HIV viral control (P < 0.10). They also were more likely to be diagnosed with asthma (P < 0.01) or substance use disorders (P < 0.05) and to have used primary care health services in the 6 months postenrollment (P < 0.05) than the pre-ACA cohort. CONCLUSIONS: As anticipated by KPNC interviewees, ACA implementation was followed by HIV-positive patient enrollment growth and changing benefit structures and patient characteristics. Although HIV viral control improved, comorbid diagnosis findings reinforced the importance of coordinated health care.


Subject(s)
Delivery of Health Care, Integrated , Disease Management , HIV Infections/diagnosis , HIV Infections/drug therapy , Health Services Accessibility , Patient Protection and Affordable Care Act , Adult , California , Female , HIV Infections/prevention & control , Humans , Male , Middle Aged , Young Adult
14.
Contemp Clin Trials ; 47: 196-201, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26820612

ABSTRACT

BACKGROUND/AIMS: Despite robust evidence to guide clinical care, most patients with diabetes do not meet all goals of risk factor control. Improved patient-provider communication during time-limited primary care visits may represent one strategy for improving diabetes care. METHODS: We designed a controlled, cluster-randomized, multi-site intervention (Pre-Visit Prioritization for Complex Patients with Diabetes) that enables patients with poorly controlled type 2 diabetes to identify their top priorities prior to a scheduled visit and sends these priorities to the primary care physician progress note in the electronic medical record. In this paper, we describe strategies to address challenges to implementing our health IT-based intervention study within a large health care system. RESULTS: This study is being conducted in 30 primary care practices within a large integrated care delivery system in Northern California. Over a 12-week period (3/1/2015-6/6/2015), 146 primary care physicians consented to enroll in the study (90.1%) and approved contact with 2496 of their patients (97.6%). Implementation challenges included: (1) navigating research vs. quality improvement requirements; (2) addressing informed consent considerations; and (3) introducing a new clinical tool into a highly time-constrained workflow. Strategies for successfully initiating this study included engagement with institutional leaders, Institutional Review Board members, and clinical stakeholders at multiple stages both before and after notice of Federal funding; flexibility by the research team in study design; and strong support from institutional leadership for "self-learning health system" research. CONCLUSIONS: By paying careful attention to identifying and collaborating with a wide range of key clinical stakeholders, we have shown that researchers embedded within a learning care system can successfully apply rigorous clinical trial methods to test new care innovations.


Subject(s)
Delivery of Health Care, Integrated , Diabetes Mellitus, Type 2/therapy , Health Priorities , Physician-Patient Relations , Primary Health Care/methods , Adult , Aged , California , Clinical Protocols , Electronic Health Records , Female , Follow-Up Studies , Humans , Male , Middle Aged , Outcome and Process Assessment, Health Care , Research Design
15.
Support Care Cancer ; 22(9): 2401-8, 2014 Sep.
Article in English | MEDLINE | ID: mdl-24691886

ABSTRACT

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.


Subject(s)
Caregivers/organization & administration , Colorectal Neoplasms/rehabilitation , Colostomy/rehabilitation , Patient-Centered Care/organization & administration , Aged , Aged, 80 and over , Colorectal Neoplasms/surgery , Female , Health Services Needs and Demand , Humans , Male , Middle Aged , Survivors , Time Factors
16.
Psychooncology ; 22(11): 2513-21, 2013 Nov.
Article in English | MEDLINE | ID: mdl-23749460

ABSTRACT

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.


Subject(s)
Colorectal Neoplasms/psychology , Colorectal Neoplasms/surgery , Ostomy/psychology , Quality of Life/psychology , Spirituality , Survivors/psychology , Adaptation, Psychological , Anastomosis, Surgical/adverse effects , Female , Health Status , Humans , Interviews as Topic , Male , Middle Aged , Ostomy/rehabilitation , Qualitative Research , Sickness Impact Profile , Social Support , Socioeconomic Factors , Surveys and Questionnaires , Survivors/statistics & numerical data
17.
Support Care Cancer ; 20(6): 1291-7, 2012 Jun.
Article in English | MEDLINE | ID: mdl-21688161

ABSTRACT

PURPOSE: Mindfulness-based stress reduction (MBSR), typically taught in eight weekly classes, helps patients cope with illness, including cancer. Current research is almost exclusively based on post-treatment class attendance. Research suggests that short courses and alternative delivery techniques may also be beneficial. This pilot study assessed whether it would be feasible for cancer patients receiving chemotherapy to listen to MBSR audio recordings individually during treatment and at home and evaluate whether the intervention shows preliminary evidence of efficacy to improve patients' mood and quality of life (QoL). METHODS: Patients were recruited from two oncology clinics. Inclusion criteria included a score ≥ 8 on the Hospital Anxiety and Depression Scale (HADS). Participants were asked to listen to study CDs containing MBSR instructions at least 5 days/week for 3 months and to maintain study diaries of their meditation practices. RESULTS: Twenty-three patients enrolled in the study, and 20 (87%; 95% confidence interval (CI), 66% to 97%) completed the study protocol. Analysis showed that participants listened to study CDs an average of 39 times during the study; mean HADS scores declined from 18.3 to 12.2 (change = -6.1 points; 95% CI, -2.9 to -9.4). Participants reported subjectively that participation improved their mood and QoL. CONCLUSIONS: This pilot study demonstrates the feasibility of investigating an individual audio MBSR intervention for patients with cancer and provides preliminary evidence that MBSR may benefit chemotherapy patients' mood and QoL. Fully powered comparative clinical trials to asses this MBSR modality to help improve mood and QoL for patients receiving chemotherapy are feasible and needed.


Subject(s)
Mind-Body Therapies/methods , Neoplasms/psychology , Quality of Life , Stress, Psychological/therapy , Adult , Affect , Aged , Feasibility Studies , Female , Humans , Male , Meditation/methods , Middle Aged , Neoplasms/drug therapy , Pilot Projects , Psychiatric Status Rating Scales , Stress, Psychological/etiology , Treatment Outcome
18.
Gastroenterology ; 137(2): 502-11, 2009 Aug.
Article in English | MEDLINE | ID: mdl-19445944

ABSTRACT

BACKGROUND & AIMS: The management of inflammatory bowel disease (IBD) has become increasingly complicated, and it is unknown whether poor outcomes (prolonged steroid use, hospitalizations, and surgery) have declined in the general population. METHODS: This multilevel study used computerized clinical data. The study comprised 2892 adults with Crohn's disease (CD) and 5895 with ulcerative colitis (UC) who received care at 16 medical centers within an integrated care organization in Northern California between 1998 and 2005. RESULTS: Time trends included (1) a shift in gastroenterology-related visits from the gastroenterology division to primary care; (2) increased use of IBD-related drugs, except for a 7% decline in use of 5-aminosalicylate in CD and no change in steroid use for CD; (3) for the prevalence of prolonged steroid exposure (120 days of continuous use), a 36% decline for CD with a 27% increase for UC; (4) declines in the hospitalization rates of 33% for CD and 29% for UC; and (5) for the surgery rate, no significant change for CD with a 50% decline for UC. CONCLUSIONS: Declines in prolonged steroid exposure and the hospitalization rate for CD and in the hospitalization and surgery rate for UC are encouraging; however, the increase in prolonged steroid exposure for UC merits concern and further investigation. The variability in care patterns observed in this study suggests lack of standardization of care and the opportunity to identify targets for quality improvement. These findings should stimulate research to quantify the effect of current trends in IBD management.


Subject(s)
Colitis, Ulcerative/mortality , Colitis, Ulcerative/therapy , Crohn Disease/mortality , Crohn Disease/therapy , Adolescent , Adrenal Cortex Hormones/therapeutic use , Adult , Aged , Aged, 80 and over , California , Colitis, Ulcerative/diagnosis , Combined Modality Therapy , Confidence Intervals , Crohn Disease/diagnosis , Cross-Sectional Studies , Delivery of Health Care, Integrated/trends , Digestive System Surgical Procedures/trends , Female , Follow-Up Studies , Humans , Immunosuppressive Agents/therapeutic use , Inflammatory Bowel Diseases/diagnosis , Inflammatory Bowel Diseases/mortality , Inflammatory Bowel Diseases/therapy , International Classification of Diseases , Male , Middle Aged , Predictive Value of Tests , Probability , Registries , Risk Assessment , Severity of Illness Index , Survival Analysis , Time Factors , Treatment Outcome , Young Adult
19.
Cancer ; 112(11 Suppl): 2617-26, 2008 Jun 01.
Article in English | MEDLINE | ID: mdl-18428194

ABSTRACT

BACKGROUND: Integrated healthcare delivery systems present unique opportunities for cancer survivorship research. The National Cancer Institute funds the Cancer Research Network (CRN) to leverage these capabilities for all types of cancer research, including survivorship. METHODS: The authors gathered information from a recent CRN funding application, Survivorship Interest Group materials, the CRN website, and published articles. CRN studies were selected to illustrate diverse topics and a variety of data-collection approaches. RESULTS: The 14 systems that participate in the CRN provide care for approximately 10.8 million individuals of all ages and racial/ethnic backgrounds, for whom approximately 38,000 new cancer diagnoses were made in 2005. CRN systems have the ability to use existing data and collect new data on patients, providers, and organizations through well established research centers staffed by independent scientists. Of the 45 funded and 2 pending CRN grant applications as of November 30, 2007, 21 include aspects related to cancer survivorship. These studies have examined clinical trial participation, patterns of care, age and racial/ethnic disparities, diffusion of clinical trial findings, treatment outcomes, surveillance, and end-of-life and palliative care. Breast, colorectal, lung, ovarian, and prostate cancers have been the focus of these studies. Results of these studies have been published widely in leading journals. CONCLUSIONS: Completed and ongoing CRN survivorship studies provide a strong foundation for future studies. Scientists from all institutional affiliations are welcome to approach the CRN with ideas and are encouraged to allow ample time to establish collaborative relationships and design rigorous studies.


Subject(s)
Delivery of Health Care, Integrated/trends , Neoplasms/mortality , Research/trends , Survivors/statistics & numerical data , Adolescent , Adult , Aged , Aged, 80 and over , Child , Child, Preschool , Delivery of Health Care, Integrated/statistics & numerical data , Female , Health Personnel/statistics & numerical data , Health Personnel/trends , Health Surveys , Humans , Infant , Infant, Newborn , Male , Medical Informatics/statistics & numerical data , Medical Informatics/trends , Medical Records/statistics & numerical data , Middle Aged , National Cancer Institute (U.S.) , Neoplasms/therapy , Research/statistics & numerical data , United States
20.
Inflamm Bowel Dis ; 14(7): 992-9, 2008 Jul.
Article in English | MEDLINE | ID: mdl-18300277

ABSTRACT

BACKGROUND: The purpose was to assess organization-, physician-, and patient-based aspects of inflammatory bowel disease (IBD) practice variation within an integrated care delivery system and the extent to which physicians are interested in adopting a chronic care model and/or nurse assistance to manage IBD patients. METHODS: As part of an observational cohort study to understand variation in IBD care and outcomes, we conducted semistructured, open-ended interviews with 17 gastroenterologists and 1 gastroenterology registered nurse at 6 clinics in an integrated care delivery system. Interviews were taperecorded and transcribed. We coded and analyzed transcripts using standard qualitative methods. RESULTS: Physicians reported a range of attitudes and practices regarding IBD. Analysis showed differences in 3 domains and 8 subdomains: 1) patient education and choices, including health education and patient use of complementary and alternative medicine; 2) decisions about diagnosis and treatment, including practice guidelines, conferring with colleagues, using infliximab, and medical hospitalization; and 3) organizational aspects of care, including primary care involvement with IBD and MD attitudes toward ancillary support. CONCLUSIONS: Standardized algorithms on care for IBD patients do not exist, but opportunities may exist to improve IBD care by: having initial work-ups and management of patients in remission in primary care; creating and maintaining opportunities for gastroenterologists to confer with colleagues and acknowledged local experts; and having nurse coordination for medications and labs and/or some type of specialty IBD clinic for high-need patients. This research highlights the need for more directed comparative efficacy and effectiveness trials that will serve to define preferred treatment strategies.


Subject(s)
Attitude of Health Personnel , Gastroenterology , Inflammatory Bowel Diseases , Cohort Studies , Complementary Therapies , Decision Making , Humans , Inflammatory Bowel Diseases/therapy , Interviews as Topic , Nurses , Patient Care/methods , Patient Education as Topic
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