Improving family caregiver and patient outcomes in lung cancer surgery: Study protocol for a randomized trial of the multimedia self-management (MSM) intervention.

OBJECTIVE: To describe the study protocol of the Multimedia Self-Management (MSM) intervention to prepare patients and family caregivers (FCGs) for lung cancer surgery. DESIGN: The study is a five-year, single site, randomized controlled trial of 160 lung cancer surgery FCG and patient dyads (320 total participants), comparing intervention and attention control arms. SETTING: One National Cancer-Institute (NCI) designated comprehensive cancer center in Southern California. PARTICIPANTS: Patients who are scheduled to undergo lung cancer surgery and their FCGs are enrolled as dyads only. INTERVENTION: Based on the Chronic Care Self-Management Model (CCM), the intervention is a nurse-led, caregiver-based, multimedia care program for lung cancer surgery. Its primary focus is to help FCGs develop self-management skills related to their caregiving role through goal setting, proactive planning, building problem-solving skills, and accessing family support services. The intervention also supports dyads to prepare for surgery and post-operative recovery at home. It includes videos, print, web-based, and post-discharge telephone support. MAIN OUTCOME MEASURES: FCG and patient psychological distress and QOL; FCG burden and preparedness for caregiving; FCG and patient healthcare resource use (in-home nursing care, urgent care/ER visits, readmissions). ANALYSIS: Repeated measures ANCOVA statistical design will be used, removing variances prior to examining mean squares for the group by occasion interactions, and co-varying the baseline scores. In addition, structured equation modeling (SEM) will assess whether mediating and moderating factors are associated with outcomes. ClinicalTrials.gov Identifier: NCT03686007.

Factors That Influence Selectionof Urinary Diversion Among Bladder Cancer Patients in 3 Community-based Integrated Health Care Systems.

OBJECTIVE: To assess the relative contributions of patient and surgeon factors for predicting selection of ileal conduit (IC), neobladder (NB), or continent pouch (CP) urinary diversions (UD) for patients diagnosed with muscle-invasive/high-risk nonmuscle invasive bladder cancer. This information is needed to enhance research comparing cancer survivors' outcomes across different surgical treatment options. METHODS: Bladder cancer patients' age ≥21 years with cystectomy/UD performed from January 2010 to June 2015 in 3 Kaiser Permanente regions were included. All patient and surgeon data were obtained from electronic health records. A mixed effects logistic regression model was used treating surgeon as a random effect and region as a fixed effect. RESULTS: Of 991 eligible patients, 794 (80%) received IC. One hundred sixty-nine surgeons performed the surgeries and accounted for a sizeable proportion of the variability in patient receipt of UD (intraclass correlation coefficient = 0.26). The multilevel model with only patient factors showed good fit (area under the curve = 0.93, Hosmer-Lemeshow test P = .44), and older age, female sex, estimated glomerular filtration rate <45, 4+ comorbidity index score, and stage III/IV tumors were associated with higher odds of receiving an IC vs neobladder/continent pouch. However, including surgeon factors (annual cystectomy volume, specialty training, clinical tenure) had no association (P = .29). CONCLUSION: In this community setting, patient factors were major predictors of UD received. Surgeons also played a substantial role, yet clinical training and experience were not major predictors. Surgeon factors such as beliefs about UD options and outcomes should be explored.

Ongoing ostomy self-care challenges of long-term rectal cancer survivors.

PURPOSE: Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care. METHODS: We mailed surveys to long-term (≥ 5 years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records. RESULTS: The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75 years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges. CONCLUSIONS: The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.

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

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

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

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

Spiritual well-being in long-term colorectal cancer survivors with ostomies.

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.

Early and late complications among long-term colorectal cancer survivors with ostomy or anastomosis.

PURPOSE: Among long-term (>or=5 y) colorectal cancer survivors with permanent ostomy or anastomosis, we compared the incidence of medical and surgical complications and examined the relationship of complications with health-related quality of life. BACKGROUND: The incidence and effects of complications on long-term health-related quality of life among colorectal cancer survivors are not adequately understood. METHODS: Participants (284 survivors with ostomies and 395 survivors with anastomoses) were long-term colorectal cancer survivors enrolled in an integrated health plan. Health-related quality of life was assessed via mailed survey questionnaires from 2002 to 2005. Information on colorectal cancer, surgery, comorbidities, and complications was obtained from computerized data and analyzed by use of survival analysis and logistic regression. RESULTS: Ostomy and anastomosis survivors were followed up for an average of 12.1 and 11.2 years, respectively. Within 30 days of surgery, 19% of ostomy survivors and 10% of anastomosis survivors experienced complications (P < .01). From 31 days on, the percentages were 69% and 67% (after adjustment, P < .001). Bleeding and postoperative infection were common early complications. Common long-term complications included hernia, urinary retention, hemorrhage, skin conditions, and intestinal obstruction. Ostomy was associated with long-term fistula (odds ratio, 5.4; 95% CI 1.4-21.2), and among ostomy survivors, fistula was associated with reduced health-related quality of life (P < .05). CONCLUSIONS: Complication rates remain high despite recent advances in methods of surgical treatment. Survivors with ostomy have more complications early in their survivorship period, but complications among anastomosis survivors catch up after 20 years, when the 2 groups have convergent complication rates. Among colorectal cancer survivors with ostomy, fistula has especially important implications for health-related quality of life.

Influence of intestinal stoma on spiritual quality of life of U.S. veterans.

PURPOSE: To examine spiritual quality of life (QOL) of veterans with intestinal ostomies. DESIGN: Mixed-method cross-sectional. METHODS: Male veterans with total scores in the upper (n = 59) and lower (n = 61) quartiles of the City of Hope Quality-of-Life-Ostomy survey provided spiritual QOL data. Analyses included chi-square and analysis of variance with significance set at p < .05. Content analysis was used to explicate narratives and focus groups. RESULTS: The high spiritual QOL group was more likely to be married, older, and report more years since surgery (each p < .0001). Upper quartile participants had more favorable scores for several spiritual QOL domains (all p < .0001). Qualitative comments reflected high or low total QOL scores. CONCLUSIONS: Spiritual QOL is influenced by an intestinal stoma. Qualitative comments lend insight into the meaning of spirituality items. Findings can assist in the provision of holistic care in this population.

Demographic, clinical, and quality of life variables related to embarrassment in veterans living with an intestinal stoma.

OBJECTIVE: The study aims were to identify demographic, clinical, and quality of life variables related to embarrassment for people living with ostomies and to determine the experiences and/or feelings of veterans who were embarrassed by their ostomy. DESIGN: This was a cross-sectional, correlational study. SETTING AND SUBJECTS: A convenience sample of veterans (n = 239) living with ostomies from 3 VA medical centers was studied. The veterans were primarily Caucasian (84%), male (92%), and older (M = 69). INSTRUMENTS: The modified City of Hope Quality of Life-Ostomy questionnaire was used. Additionally, an open-ended question related to living with an ostomy was asked. METHODS: The questionnaire packets were mailed to participants and self-administered. RESULTS: Approximately half of the participants (48%) rated their embarrassment as low, but 26% reported high embarrassment. Participants with high embarrassment were compared to those with low embarrassment on demographic, clinical, and quality of life variables. High embarrassment was associated with poorer total quality of life (P < .001) and poorer quality of life on the physical (P < .001), psychological (P < .001), social (P < .001), and spiritual (P < .001) subscales. Younger (P < .001) and unpartnered veterans (P < .001) were more likely to be highly embarrassed. Veterans with high embarrassment had higher anxiety (P < .001) and depression (P < .001), more difficulty with intimacy (P < .001), and felt more isolated (P < .001). Spiritual domain variables like hopefulness were associated with low embarrassment (P < .001). Sources of embarrassment included leakage, odor, and noise. CONCLUSIONS: Embarrassment may negatively impact a person's quality of life; therefore, the variables associated with high embarrassment should be recognized and addressed.