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1.
J Clin Oncol ; 40(13): 1464-1473, 2022 05 01.
Article in English | MEDLINE | ID: mdl-35130043

ABSTRACT

PURPOSE: GOG-259 was a 3-arm randomized controlled trial of two web-based symptom management interventions for patients with recurrent ovarian cancer. Primary aims were to compare the efficacy of the nurse-guided (Nurse-WRITE) and self-directed (SD-WRITE) interventions to Enhanced Usual Care (EUC) in improving symptoms (burden and controllability) and quality of life (QOL). METHODS: Patients with recurrent or persistent ovarian, fallopian, or primary peritoneal cancer with 3+ symptoms were eligible for the study. Participants completed baseline (BL) surveys (symptom burden and controllability and QOL) before random assignment. WRITE interventions lasted 8 weeks to develop symptom management plans for three target symptoms. All women received EUC: monthly online symptom assessment with provider reports; online resources; and every 2-week e-mails. Outcomes were evaluated at 8 and 12 weeks after BL. Repeated-measures modeling with linear contrasts evaluated group by time effects on symptom burden, controllability, and QOL, controlling for key covariates. RESULTS: Participants (N = 497) reported mean age of 59.3 ± 9.2 years. At BL, 84% were receiving chemotherapy and reported a mean of 14.2 ± 4.9 concurrent symptoms, most commonly fatigue, constipation, and peripheral neuropathy. Symptom burden and QOL improved significantly over time (P < .001) for all three groups. A group by time interaction (P < .001) for symptom controllability was noted whereby both WRITE intervention groups had similar improvements from BL to 8 and 12 weeks, whereas EUC did not improve over time. CONCLUSION: Both WRITE Intervention groups showed significantly greater improvements in symptom controllability from BL to 8 and BL to 12 weeks compared with EUC. There were no significant differences between Nurse-WRITE and SD-WRITE. SD-WRITE has potential as a scalable intervention for a future implementation study.


Subject(s)
Ovarian Neoplasms , Quality of Life , Aged , Carcinoma, Ovarian Epithelial , Fatigue , Female , Humans , Middle Aged , Ovarian Neoplasms/drug therapy , Palliative Care , Symptom Assessment
2.
Support Care Cancer ; 29(5): 2423-2434, 2021 May.
Article in English | MEDLINE | ID: mdl-32918611

ABSTRACT

PURPOSE: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. METHODS: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. RESULTS: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. CONCLUSION: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.


Subject(s)
Caregivers/psychology , Delivery of Health Care/methods , Neoplasms/therapy , Stakeholder Participation/psychology , Aged , Female , Humans , Male , Neoplasms/psychology
3.
JCO Oncol Pract ; 16(3): e264-e270, 2020 03.
Article in English | MEDLINE | ID: mdl-31496394

ABSTRACT

PURPOSE: A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS: Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS: For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION: This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.


Subject(s)
Caregivers/standards , Genital Neoplasms, Female/therapy , Female , Humans , Male
4.
Int J Gynecol Cancer ; 28(9): 1737-1742, 2018 11.
Article in English | MEDLINE | ID: mdl-30358703

ABSTRACT

OBJECTIVE: Sexual health is important to quality of life; however, the sexual health of gynecologic cancer patients is infrequently and inadequately addressed. We sought to understand patient experiences and preferences for sexual health care to help inform strategies for improvement. METHODS/MATERIALS: An anonymous, cross-sectional survey of outpatient gynecologic cancer patients at a large academic medical center was performed as part of a larger study examining patient and caregiver needs. The survey explored patient-provider discussions about sexuality across 3 domains (experiences, preferences, barriers) and 4 phases of cancer care (diagnosis, treatment, treatment completion, follow-up). Age, relationship status, sexual activity, and cancer type were recorded. RESULTS: Mean age was 63 years. Most patients had ovarian cancer (38%) or endometrial cancer (32%). Thirty-seven percent received treatment within the last month, 55% were in a relationship, and 35% were sexuality active. Thirty-four percent reported sexuality as somewhat or very important, whereas 27% felt that it was somewhat or very important to discuss. Importance of sexuality was associated with age, relationship status, and sexual activity but not cancer type. Fifty-seven percent reported never discussing sexuality. Age was associated with sexuality discussions, whereas relationship status, sexual activity, and cancer type were not. The most common barrier to discussion was patient discomfort. Follow-up was identified as the best time for discussion. Sexuality was most often discussed with a physician or advanced practice provider and usually brought up by the provider. CONCLUSIONS: Demographic predictors of importance of sexuality to the patient are age, relationship status, and sexual activity. Providers primarily use age as a proxy for importance of sexuality; however, relationship status and sexual activity may represent additional ways to screen for patients interested in discussing sexual health. Patient discomfort with discussing sexuality is the primary barrier to sexual health discussions, and awareness of this is key to developing effective approaches to providing sexual health care.


Subject(s)
Genital Neoplasms, Female/therapy , Palliative Care/methods , Sexual Dysfunctions, Psychological/therapy , Sexual Health , Sexuality , Adult , Aged , Aged, 80 and over , Endometrial Neoplasms/physiopathology , Endometrial Neoplasms/psychology , Endometrial Neoplasms/therapy , Female , Genital Neoplasms, Female/physiopathology , Genital Neoplasms, Female/psychology , Humans , Middle Aged , Ovarian Neoplasms/physiopathology , Ovarian Neoplasms/psychology , Ovarian Neoplasms/therapy , Patient Preference , Quality of Life , Sexual Dysfunctions, Psychological/etiology , Sexual Dysfunctions, Psychological/physiopathology , Sexual Dysfunctions, Psychological/psychology
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