Quality of Life in Patients and Their Spouses and Cohabitating Partners in the Year Following a Cancer Biopsy (the Couples Cope Study): Protocol for a Prospective Observational Study.

BACKGROUND: Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. OBJECTIVE: The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. METHODS: Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. RESULTS: A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75% (n=321) were eligible to participate. Of the eligible patients, 72% (n=231) enrolled and 82% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77% (34/44) of patients who received a cancer diagnosis and 72% (26/36) of their spouses or partners were retained through 9 months, while 80% (53/66) of patients who received a benign diagnosis and 68% (42/62) of their partners were retained. CONCLUSIONS: Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52361.

Coping strategies and psychosocial resources among women living with metastatic breast cancer: A qualitative study.

Objective: Despite more women living with metastatic breast cancer (MBC), this population is underrepresented in cancer survivorship research. Few studies have assessed how women with MBC cope with their cancer experience. This qualitative study describes the coping strategies and psychosocial resources utilized by women living with MBC.Methods: Twenty-two women with MBC participated in four focus groups. Transcripts were analyzed using a general inductive approach. Codes derived from participants' responses were subsequently condensed into themes.Results: We identified 12 coping strategies and psychosocial resources and grouped them into five themes: Behavioral Coping Strategies (i.e. stress management, active coping and planning); Cognitive Coping Strategies and Psychological Resources (i.e. cognitive reappraisal, optimism, mindfulness, positive thinking, and religious coping); Existential Approach-Oriented Coping (i.e. acceptance, values-based living, and identity integration); Avoidance (i.e. avoidant coping); and Interpersonal Resources and Seeking Social Support (i.e. social support).Conclusions: Women living with MBC utilize several engagement and disengagement coping strategies, as well as intrapersonal and interpersonal resources. This study provides useful perspectives of women living with MBC that may inform the development of psychosocial interventions. Further research is needed to assess coping strategies and psychosocial resources across different subgroups of MBC patients and determine their impact on cancer outcomes.

Characterizing unique supportive care needs among women living with metastatic breast cancer: A qualitative study.

Background: Women with metastatic breast cancer face unique challenges as they cope with life-limiting prognoses and arduous treatments. However, the vast majority of research has focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer and little is known about supportive care needs among women living with metastatic cancer. As part of a larger project that sought to inform the development of a psychosocial intervention, the aim of this study was to characterize supportive care needs among women with metastatic breast cancer and elucidate challenges unique to living with a life-limiting prognosis. Methods: Four, two-hour focus groups with 22 women were audio-recorded, transcribed verbatim, and analyzed in Dedoose using a general inductive approach to code categories and extract themes. Results: A total of 16 codes emerged from 201 participant comments regarding supportive care needs. Codes were collapsed into four supportive care need domains: 1. psychosocial, 2. physical and functional, 3. health system and information, and 4. sexuality and fertility needs. The most prevalent needs were breast cancer-related symptom burden (17.4%), lack of social support (14.9%), uncertainty (10.0%), stress management (9.0%), patient-centered care (7.5%), and sexual functioning (7.5%). More than half of needs (56.2%) were in the psychosocial domain and more than two-thirds of needs (76.8%) were in the psychosocial and physical and functional domains. Supportive care needs unique to living with metastatic breast cancer included the cumulative effects of continuously undergoing cancer treatment on symptom burden, worry from scan-to-scan regarding response to cancer treatments, diagnosis-related stigma and social isolation, end-of-life concerns, and misconceptions regarding metastatic breast cancer. Conclusions: Findings suggest that women with metastatic breast cancer have unique supportive care needs compared to women with early-stage breast cancer that are specific to living with a life-limiting prognosis and are not typically captured in existing self-report measures of supportive care needs. Results also highlight the importance of addressing psychosocial concerns and breast cancer-related symptoms. Women with metastatic breast cancer may benefit from early access to evidence-based interventions and resources that specifically address their supportive care needs and optimize quality of life and wellbeing.

A Modification of the Anoplasty Technique during a Posterior Sagittal Anorectoplasty and Anorectal Vaginal Urethroplasty Closure: The Para-U-Stitch to Prevent Wound Dehiscence.

OBJECTIVE: Wound dehiscence after posterior sagittal anorectoplasty (PSARP) or anorectal vaginal urethroplasty (PSARVUP) for anorectal malformation (ARM) is a morbid complication. We present a novel anoplasty technique employing para-U-stitches along the anterior and posterior portions of the anoplasty, which helps buttress the midline U-stitch and evert the rectal mucosa. We hypothesized that, in addition to standardized pre- and postoperative protocols, this technique would lower rates of wound dehiscence. MATERIALS AND METHODS: A retrospective review of patievnts who underwent primary PSARP or PSARVUP with the para-U-stitch technique from 2015 to 2021 was performed. Wound dehiscence was defined as wound disruption requiring operative intervention within 30 days of the index operation. Superficial wound separations were excluded. Descriptive statistics were calculated. The final cohort included 232 patients. RESULTS: Rectoperineal fistula (28.9%) was the most common ARM subtype. PSARP was performed in 75% and PSARVUP in 25%. The majority were reconstructed with a stoma in place (63.4%). Wound dehiscence requiring operative intervention occurred in four patients, for an overall dehiscence rate of 1.7%. The dehiscence rate was lower in PSARPs compared with PSARVUPs (0.6 vs. 5.2%) and lower for reconstruction without a stoma compared with a stoma (1.2 vs. 2.0%). There were additional six patients (2.6%) with superficial wound infections managed conservatively. CONCLUSION: We present the para-U-stitch anoplasty technique, which is an adjunct to the standard anoplasty during PSARP and PSARVUP. In conjunction with standardized pre- and postoperative protocols, this technique can help decrease rates of wound dehiscence in this patient population.

Pilot study of an adult bowel management program for fecal incontinence.

OBJECTIVE: Bowel management programs are efficacious in pediatric patients with fecal incontinence or intractable constipation unresponsive to standard treatment. No studies have been done examining outcomes in adults. The objective of this study was to assess continence and quality of life outcomes in adults who have underwent bowel management program. METHODS: A retrospective review of patients 16 or older at the time they underwent a bowel management program for fecal incontinence or constipation was performed. Data collected included intake and follow-up stool and urinary continence, patient-reported outcomes measures (Cleveland Clinic Constipation Score, Baylor Continence Scale, Vancouver Symptom Score for Dysfunctional Elimination), and an age-adjusted health-related quality of life measure. RESULTS: The cohort included 38 patients with a median age of 19 years (range: 16-55) when they underwent our program. 50% of patients were female and the majority (33, 87%) were White. The most common diagnosis was anorectal malformation (16, 42%) followed by functional constipation (10, 27%). Stool continence rates improved after undergoing the program (52.7% prior to 87.6% at follow-up, p<0.01). There was significant improvement in the Baylor Continence Scale, Cleveland Clinic Constipation Score, and PedsQL (p<0.05). CONCLUSIONS: Adult patients who underwent a bowel management program for severe fecal incontinence or constipation show significant improvement in stool continence rates, patient-reported outcomes measures, and quality of life. A bowel management program (in-person or via telemedicine) is a feasible treatment strategy for adult patients who fail standard management of fecal incontinence or constipation and should be offered when appropriate. LEVEL OF EVIDENCE: III.

Both sides of the screen: Provider and patient perspective on telemedicine in pediatric surgery.

BACKGROUND: There has been increased telemedicine use secondary to the COVID-19 pandemic. The objective of this study was to assess patient/parent satisfaction with their telemedicine experience, gauge provider perspective on telemedicine for the management of pediatric colorectal disease and evaluate the quality of telemedicine care being provided. METHODS: A cross sectional study was performed at a single institution from March 2020-February 2021. Patients who completed a patient/parent telemedicine survey after a telemedicine appointment and nurse practitioners/surgeons who completed a provider telemedicine survey were included. Patient and provider characteristics and responses were analyzed using descriptive statistics. Differences between the levels of provider confidence to provide telemedicine care were analyzed using Pearson's chi-square test. RESULTS: 118 patients/parents completed the survey. The median age of patients was 7 years. Most patients were male (59%) and White (73%). The most common diagnosis was anorectal malformation (49%). 71% of parents felt the telemedicine visit was as effective or better than an in-person visit and over 70% said they prefer a telemedicine visit to an in-person visit. Ten surgeons and 8 nurse practitioners completed the provider survey. 28% had previous telemedicine experience and 94% planned to continue offering telemedicine appointments. Providers felt significantly more confident performing clinical duties via video telemedicine compared to telephone telemedicine. CONCLUSIONS: Telemedicine is a useful adjunct or alternative in pediatric surgery for complex patients who require multidisciplinary care. Providers show confidence with the use of video telemedicine and parents show high satisfaction, with the majority preferring telemedicine visits over in-person visits. LEVEL OF EVIDENCE: IV.

Study design and protocol for tailored Acceptance and Commitment Therapy (ACT) to optimize quality of life in women living with metastatic breast cancer.

Women living with metastatic (stage IV) breast cancer face unique challenges, including arduous treatments, side effects, chronic symptom burden, and emotional distress. Nevertheless, most research has paradoxically focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer. Acceptance and Commitment Therapy (ACT) is an evidence-based, third-wave cognitive behavioral therapy that focuses on creating 'a life worth living' by promoting meaning and purpose and optimizing quality of life. ACT may be particularly well-suited for women with metastatic breast cancer as it addresses salient existential concerns, while allowing for the co-occurrence of feelings of grief and loss that are normal and expected when facing a life-limiting prognosis. This manuscript describes the rationale and study design of a pilot randomized controlled trial to develop and assess the feasibility and acceptability of a tailored ACT intervention for women living with metastatic breast cancer. Participants (N = 30) will be randomized 1:1 to either ACT, cognitive behavioral stress management (CBSM), or a usual care control. Both ACT and CBSM are 8-week, group-based interventions that will be delivered online. Primary outcomes are rates of acceptance, retention, and satisfaction. Preliminary effects on variables of interest, including meaning and purpose, psychological flexibility, and several domains of quality of life, will also be examined. Findings will inform the conduct of a full-scale randomized controlled trial of our tailored ACT intervention in women living with metastatic breast cancer.

Outcomes of a telemedicine bowel management program during COVID-19.

PURPOSE: Due to the COVID-19 pandemic, we transitioned from an in-person bowel management program (BMP) to a telemedicine BMP. The telemedicine BMP consisted of video and/or phone call visits (remote) or a single initial in-person visit followed by remote visits (hybrid). We hypothesized that patient/family satisfaction of a telemedicine BMP would be comparable to an in-person BMP and that there would be improvement in quality of life and functional outcomes after the telemedicine BMP. METHODS: After IRB approval, demographic and outcomes data were obtained for patients who underwent the telemedicine BMP from May-October 2020. Outcomes included a parent/patient satisfaction survey, Pediatric Quality of Life Inventory (PedsQL), and parent/patient-reported outcome measures (Vancouver, Baylor, and Cleveland scores) at baseline, 1 and 3 month follow-up. Variables were compared using Chi-square or Wilcoxon-Mann-Whitney tests and a generalized mixed model was used to evaluate outcomes scores at follow-up compared to baseline. RESULTS: Sixty-seven patients were included in our analysis with an average age of 8.6 years (SD: 3.9). Patients had the following diagnoses anorectal malformation (52.2%), Hirschsprung's disease (20.9%), functional constipation (19.4%), myelomeningocele (6.0%), and spinal injury (1.5%). Forty-eight patients (72%) underwent the remote BMP and 19 (28%) underwent the hybrid BMP. Sixty-two percent of parents completed the satisfaction survey, with a median score of 5 (very satisfied) for all questions. Over 75% of parents said they would prefer a telemedicine program over an in-person program. There was significant improvement in the Baylor and Vancouver scores after the BMP (p < 0.01), but no difference in the PedsQL or Cleveland scores (p > 0.05). There was a significant improvement in stool continence after the BMP (p < 0.01). CONCLUSION: A telemedicine BMP can be an acceptable alternative to a traditional in-person program. There was high parental/patient satisfaction and significant improvement in outcomes. Further research is needed to assess long-term outcomes. LEVEL OF EVIDENCE: III.