Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 68
Filter
Add more filters

Country/Region as subject
Publication year range
1.
Gynecol Oncol ; 186: 211-215, 2024 07.
Article in English | MEDLINE | ID: mdl-38850766

ABSTRACT

OBJECTIVES: Minimally invasive surgery for treatment of gynecologic malignancies is associated with decreased pain, fewer complications, earlier return to activity, lower cost, and shorter hospital stays. Patients are often discharged the day of surgery, but occasionally stay overnight due to prolonged post-anesthesia care unit (PACU) stays. The objective of this study was to identify risk factors for prolonged PACU length of stay (LOS). METHODS: This is a single institution retrospective review of patients who underwent minimally invasive hysterectomy for gynecologic cancer from 2019 to 2022 and had a hospital stay <24-h. The primary outcome was PACU LOS. Demographics, pre-operative diagnoses, and surgical characteristics were recorded. After Box-Cox transformation, linear regression was used to determine significant predictors of PACU LOS. RESULTS: For the 661 patients identified, median PACU LOS was 5.04 h (range 2.16-23.76 h). On univariate analysis, longer PACU LOS was associated with increased age (ρ = 0.106, p = 0.006), non-partnered status [mean difference (MD) = 0.019, p = 0.099], increased alcohol use (MD = 0.018, p = 0.102), increased Charlson Comorbidity Index (CCI) score (ρ = 0.065, p = 0.097), and ASA class ≥3 (MD = 0.033, p = 0.002). Using multivariate linear regression, increased age (R2 = 0.0011, p = 0.043), non-partnered status (R2 = 0.0389, p < 0.001), and ASA class ≥3 (R2 = 0.0250, p = 0.023) were associated with increased PACU LOS. CONCLUSIONS: Identifying patients at risk for prolonged PACU LOS, including patients who are older, non-partnered, and have an ASA class ≥3, may allow for interventions to improve patient experience, better utilize hospital resources, decrease PACU overcrowding, and limit postoperative admissions and complications. The relationship between non-partnered status and PACU LOS is the most novel relationship identified in this study.


Subject(s)
Genital Neoplasms, Female , Hysterectomy , Length of Stay , Humans , Female , Length of Stay/statistics & numerical data , Middle Aged , Genital Neoplasms, Female/surgery , Hysterectomy/methods , Hysterectomy/statistics & numerical data , Retrospective Studies , Aged , Adult , Minimally Invasive Surgical Procedures/adverse effects , Minimally Invasive Surgical Procedures/statistics & numerical data , Minimally Invasive Surgical Procedures/methods , Risk Factors , Anesthesia Recovery Period
2.
Psychooncology ; 33(1): e6269, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38095337

ABSTRACT

OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Male , Female , Reproducibility of Results , Surveys and Questionnaires , Psychometrics
3.
Pain Manag Nurs ; 25(1): 56-61, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37563052

ABSTRACT

BACKGROUND: Pain and mood disturbances, such as anxiety and depression, are common symptoms in gynecologic cancer. Their associations and the role of personality traits in pain adaptation during chemotherapy remain unclear. This ancillary data analysis aimed to investigate these relationships. AIM: To (1) depict the temporal trend of daily pain severity; (2) evaluate dynamic associations between mood and pain; and (3) explore personality traits (neuroticism and conscientiousness) as moderators of the mood-pain relationship during chemotherapy for gynecologic cancer. METHOD: Symptom severity was assessed daily throughout chemotherapy, while personality, clinical, and demographic characteristics were assessed at baseline. Twenty-seven women with gynecologic cancer who completed daily symptom assessments for at least four cycles were included in the analyses. RESULTS: Pain severity decreased slightly during chemotherapy. Multilevel modeling supported significant associations between pain and anxiety (b = 0.24, standard error [SE] = 0.06, p = .001) and depression (b = 0.30, SE = 0.08, p = .002). Time-varying effect modeling showed significant associations between anxiety and pain that initially increased and then decreased; and significant associations between depression and pain steadily decreased over the first four cycles of chemotherapy. Neuroticism moderated the association between anxiety and pain (b = 0.15, SE = 0.06, p < .05), with anxiety more strongly associated with pain in those with higher neuroticism. CONCLUSIONS: This study highlights the dynamic nature of pain and its associations with anxiety and depression in individuals with gynecologic cancer undergoing chemotherapy. The findings have implications for understanding pain and developing tailored psychosocial symptom management interventions to prevent pain during chemotherapy.


Subject(s)
Neoplasms , Pain , Humans , Female , Affect , Anxiety/psychology , Personality , Depression/etiology , Depression/psychology
4.
Cancer ; 129(19): 3034-3043, 2023 10 01.
Article in English | MEDLINE | ID: mdl-37243943

ABSTRACT

BACKGROUND: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer. METHODS: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis. RESULTS: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group. CONCLUSIONS: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.


Subject(s)
Breast Neoplasms , Genital Neoplasms, Female , Humans , Female , Feasibility Studies , Breast Neoplasms/therapy , Breast Neoplasms/pathology , Genital Neoplasms, Female/therapy , Treatment Outcome , Surveys and Questionnaires
5.
Support Care Cancer ; 30(3): 2059-2068, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34655326

ABSTRACT

PURPOSE: Patients with primary malignant brain tumors have high symptom burden and commonly rely on family caregivers for practical and emotional support. This can lead to negative mental and physical consequences for caregivers. We investigated effectiveness of an 8-week nurse-led online needs-based support program (SmartCare©) with and without online self-guided cognitive behavioral therapy (CBT) for depression compared to enhanced care as usual (ECAU) on depressive symptoms, caregiving-specific distress, anxiety, mastery, and burden. METHODS: Family caregivers scoring ≥ 6 on a depressive symptoms inventory were randomized to three groups: ECAU plus self-guided CBT and SmartCare©; ECAU plus SmartCare©; ECAU only. Primary outcomes (depressive symptoms; caregiving-specific distress) and secondary outcomes (anxiety, caregiver mastery, and caregiver burden) were assessed online. Intention to treat (ITT) and per protocol (PP) analyses of covariance corrected for baseline scores were performed for outcomes at 4 months. RESULTS: In total, 120 family caregivers participated. Accrual and CBT engagement were lower than expected, therefore intervention groups were combined (n = 80) and compared to ECAU (n = 40). For depressive symptoms, no statistically significant group differences were found. Caregiving-specific distress decreased in the intervention group compared with ECAU (ITT: p = 0.01, partial ɳ2 = 0.08; PP: p = 0.02, partial ɳ2 = 0.08). A trend towards improvement in mastery for the intervention group compared with ECAU was identified (ITT: p = 0.08, partial ɳ2 = 0.04; PP: p = 0.07, partial ɳ2 = 0.05). CONCLUSIONS: SmartCare©, with or without self-guided CBT, reduced caregiving-specific distress with a trend towards improving mastery. SmartCare© has the potential to improve the lives of families coping with a brain tumor diagnosis. TRIAL REGISTRATION NUMBER: NCT02058745; 10 February 2014.


Subject(s)
Brain Neoplasms , Cognitive Behavioral Therapy , Adaptation, Psychological , Anxiety/therapy , Caregivers , Humans , Quality of Life
6.
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
7.
Psychooncology ; 29(3): 507-516, 2020 03.
Article in English | MEDLINE | ID: mdl-31733024

ABSTRACT

OBJECTIVE: Survivors of multiple primary cancers (MPC) are at increased risk for poor health outcomes compared with survivors of single cancers. Using an adapted psychobehavioral stress-response model, the study purpose was to identify pathways and individual risk factors associated with poor health outcomes in adults with MPC. METHODS: Adult MPC survivors (N = 211) with first cancers (stages I-III) diagnosed within 1 to 10 years were recruited via tumor registry. Employing a cross-sectional design, established questionnaires were used to operationalize patient characteristics and theoretical constructs including perceived stress, psychological and behavioral responses, financial hardship, social role function, and physical health. Disease and treatment data were obtained via registry and medical records. Structural equation modeling (SEM) was performed to fit, test, and modify the hypothesized psychobehavioral model. RESULTS: Following measurement model refinement, an SEM linking self-management behaviors, distress, financial hardship, and functional health demonstrated a good fit: χ2 (200, N = 206) = 332.06, P < .01; Tucker-Lewis index (TLI) = .95, comparative fit index (CFI) = .96, standardized root mean residual (SRMR) = .06, root-mean-square error of approximation (RMSEA) = .06. Less use of self-management behaviors predicted higher distress which, in turn, predicted higher financial hardship; higher distress and financial hardship predicted poorer functional health. Several sociodemographic and personal factors predicted self-management behaviors and distress. CONCLUSIONS: The hypothesized stress-response model was partially supported. Data supported pathways among self-management behaviors, distress, financial hardship, and functional health. Self-management and distress may represent modifiable intervention targets for MPC survivors. High body mass index (BMI), less education, greater neuroticism, and lower social support were associated with less use of self-management behaviors and higher distress and should be further evaluated as potential markers of vulnerability.


Subject(s)
Cancer Survivors/psychology , Health Behavior , Neoplasms, Multiple Primary/psychology , Social Support , Stress, Psychological/psychology , Adult , Body Mass Index , Cross-Sectional Studies , Female , Health Status , Humans , Male , Middle Aged , Risk Factors , Self-Management , Socioeconomic Factors , Surveys and Questionnaires
8.
Gynecol Oncol ; 152(2): 304-309, 2019 02.
Article in English | MEDLINE | ID: mdl-30503049

ABSTRACT

OBJECTIVE: Evaluate the ability of an office-administered phenotypic frailty assessment to predict chemotherapy tolerance in older adult gynecologic oncology patients, and describe practice patterns for chemotherapy administration in this population. METHODS: Prospective, single-institution cohort study of gynecologic oncology patients 65 or older initiating chemotherapy. Phenotypic frailty testing at an office visit encompassed components of two validated frailty assessments: Fried Score (physical testing and patient response) and FRAIL Scale (patient response only). Patients were followed through three cycles of neoadjuvant chemotherapy or six cycles of adjuvant chemotherapy. Standard statistics examined the relationship of frailty to chemotherapy regimen, ability to complete chemotherapy, and complications. RESULTS: Eighty patients were included, 65% with ovarian and 34% with endometrial cancer. On average 57% of patients were fit, 32% intermediately frail, and 11% frail. 68% received adjuvant chemotherapy versus 32% neoadjuvant. The majority (81%) received IV chemotherapy on a 21-day cycle and 81% initially received a regimen consistent with standard-of-care chemotherapy (SOCC). Age was not associated with receiving SOCC, or tolerance or completion of chemotherapy. Frailty was associated with non-initiation of SOCC in all patients and inability to complete SOCC in adjuvant patients. Complications and regimen alterations were common but were not associated with frailty. CONCLUSIONS: There is a need to develop tools to help physicians predict chemotherapy tolerance among older adult gynecologic oncology patients in order to prevent both under- and over-treatment while minimizing morbidity. However, in this study phenotypic frailty assessment had limited predictive utility. Among adjuvant chemotherapy patients, frailty was associated with inability to complete SOCC and thus may be helpful in selecting patients appropriate for less aggressive chemotherapy regimens.


Subject(s)
Antineoplastic Combined Chemotherapy Protocols/adverse effects , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Endometrial Neoplasms/drug therapy , Frailty/diagnosis , Ovarian Neoplasms/drug therapy , Age Factors , Aged , Aged, 80 and over , Carboplatin/administration & dosage , Carboplatin/adverse effects , Chemotherapy, Adjuvant , Cohort Studies , Endometrial Neoplasms/surgery , Female , Frailty/physiopathology , Humans , Neoadjuvant Therapy , Ovarian Neoplasms/surgery , Paclitaxel/administration & dosage , Paclitaxel/adverse effects , Predictive Value of Tests , Prospective Studies
9.
Int J Gynecol Cancer ; 28(9): 1722-1727, 2018 11.
Article in English | MEDLINE | ID: mdl-30325785

ABSTRACT

OBJECTIVES: As gynecologic cancer care shifts to the outpatient setting, caregivers are instrumental in helping patients navigate the demands of the disease and treatment. Through social media, we aimed to understand the needs of caregivers of patients with gynecologic cancers and support services necessary to meet these needs. METHODS: On January 10, 2018, a monthly Twitter discussion session was hosted by the GYNecologic Cancer Social Media community (handle @GYNCSM) using the hashtag #GYNCSM. Five topics regarding caregiver needs and support were discussed. Basic descriptive statistics, including means and frequencies of tweets, and a content analysis of the tweets were performed. RESULTS: Forty-six participants posted a total of 471 tweets, with 1.725 million impressions. Four main themes of caregiver needs emerged, including accepting help from others, a need to care for themselves as caregivers, increased access to information and resources, and a need for the health care team to communicate with caregivers. Themes relating to barriers to obtaining support services included practical barriers, a lack of awareness, negative emotions, and a need to do it all themselves. Participants suggested that caregiver support programs include convenient resources, caregiver peer support programs, support for the "work" of caregiving, and support to improve the emotional and physical health of the caregiver. CONCLUSIONS: Experts, patients, and caregivers effectively engaged in social media to identify a wide range of needs of caregivers of women with gynecologic cancers. Further research is needed to identify specific support services that could meet the priority needs of a broader network of caregivers.


Subject(s)
Caregivers/organization & administration , Caregivers/psychology , Genital Neoplasms, Female/therapy , Health Services Needs and Demand , Female , Genital Neoplasms, Female/psychology , Humans , Needs Assessment , Social Media
10.
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
11.
J Adv Nurs ; 74(4): 976-987, 2018 Apr.
Article in English | MEDLINE | ID: mdl-29117439

ABSTRACT

AIM: To develop and psychometrically test the validity of the Female Self-Advocacy in Cancer Survivorship Scale. BACKGROUND: Female cancer survivors need to self-advocate to overcome challenges associated with cancer yet no valid measure of self-advocacy exists. DESIGN: Instrument development. Mixed-mode cross-sectional survey design. PARTICIPANTS: We recruited adult females (18+ years; N = 317) with a history of invasive cancer from local and national tumour registries and advocacy organizations to complete online or paper questionnaires. METHODS: Between July 2014 - March 2015 to evaluate the construct validity based on evidence of the scale's: (1) internal structure consistent with the underlying model of self-advocacy; (2) sensitivity to differences between groups known to differ in self-advocacy skills; (3) relationships between self-advocacy and key potential predictors (openness and conscientiousness; information engagement; social support) and outcomes (symptom burden and healthcare utilization); (4) relationships between self-advocacy and related concepts (patient activation; self-advocacy within another patient population); and (5) relationships between self-advocacy and criterion measures. Analyses included an exploratory factor analysis, t tests, and bivariate correlations using validated, reliable measures for constructs. RESULTS: Evidence from all five hypotheses supported the construct validity of the Female Self-Advocacy in Cancer Survivorship Scale. The factor analysis confirmed the three underlying dimensions of self-advocacy resulting in a 20-item measure with strong internal consistency that explained almost half of response variance. CONCLUSION: The Female Self-Advocacy in Cancer Survivorship Scale is a valid, reliable measure of how well adult female cancer survivors can get their needs met in the face of adversity.


Subject(s)
Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Neoplasms/psychology , Self Efficacy , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Middle Aged , Psychometrics , Reproducibility of Results , Surveys and Questionnaires , United States
12.
Cancer ; 123(5): 832-840, 2017 03 01.
Article in English | MEDLINE | ID: mdl-27787881

ABSTRACT

BACKGROUND: Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM. METHODS: Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment). RESULTS: A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001). CONCLUSIONS: To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society.


Subject(s)
Caregivers/psychology , Glioblastoma/epidemiology , Glioblastoma/psychology , Survival Rate , Adolescent , Adult , Aged , Anxiety/epidemiology , Anxiety/psychology , Cost of Illness , Depression/epidemiology , Depression/psychology , Female , Glioblastoma/pathology , Humans , Longitudinal Studies , Male , Middle Aged , Social Support
13.
J Neurooncol ; 134(1): 157-167, 2017 Aug.
Article in English | MEDLINE | ID: mdl-28550505

ABSTRACT

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.


Subject(s)
Brain Neoplasms/therapy , Caregivers/psychology , Quality of Life/psychology , Telemedicine/statistics & numerical data , Adult , Aged , Aged, 80 and over , Attitude to Health , Brain Neoplasms/psychology , Female , Humans , Male , Medical Oncology , Middle Aged , Netherlands/epidemiology
14.
Psychooncology ; 26(12): 2030-2039, 2017 Dec.
Article in English | MEDLINE | ID: mdl-27758055

ABSTRACT

OBJECTIVE: The incidence of multiple primary cancers (MPCs) is increasing, but little is known about psychological distress in this population. The purpose of this study is to review and synthesize the literature regarding what is known about psychological distress in adults who have experienced MPC diagnoses. METHODS: All potentially eligible studies identified in PubMed and CINAHL were reviewed by 2 independent evaluators, and each relevant article was assessed for methodological quality. Data were extracted, organized, and recorded using a coding log, PRISMA flow diagram, and a standardized table of evidence. Effect size (ES) values were calculated using Cohen's d. RESULTS: Five of the 562 potentially relevant articles were selected for final analysis. MPC survivors, when compared with single cancer survivors, had lower global quality of life (d = 0.32-0.37), poorer emotional role function and stress (d = 0.08-0.20), greater and more frequent distress (d = 0.11-0.37), and greater subclinical anxiety (d = 0.15). Depressive symptoms were variable (d = 0.01-0.22), and no differences between MPC and single cancer groups were identified for sleep and suicidal ideation. CONCLUSION: There is a substantial lack of evidence focused on psychological distress among the growing MPC survivor population. ES noted in the 5 studies reflect small but potentially significant increases in psychological distress in survivors of MPC compared with survivors of a single cancer. Clinicians should be aware of this at-risk population when screening for distress in cancer survivors. Suggestions for future research are provided.


Subject(s)
Anxiety/psychology , Depression/psychology , Neoplasms, Multiple Primary/psychology , Quality of Life/psychology , Stress, Psychological/psychology , Adult , Female , Humans , Male , Neoplasms, Second Primary , Risk Factors , Survivors/psychology
16.
Gynecol Oncol ; 143(2): 367-370, 2016 Nov.
Article in English | MEDLINE | ID: mdl-27531571

ABSTRACT

OBJECTIVE: We sought to compare symptoms identified as a priority by patients with recurrent ovarian cancer to symptoms most frequently documented by their clinicians, and examine the association between clinician documentation of symptoms and subsequent clinical intervention. METHODS: Single-institution, retrospective chart review of patients enrolled in WRITE Symptoms Study (GOG 259), a randomized controlled trial of internet-based recurrent ovarian cancer symptom management. As part of the trial, women completed the Symptom Representation Questionnaire for 28 symptoms and selected 3 priority symptoms (PS). We compared patient-reported PS to clinician documentation of symptoms and interventions over the time period corresponding to study enrollment. RESULTS: At least one PS was documented in 92% of patients. Of 150 PS reported by patients, 53% were never documented by clinicians; these symptoms tended to be less directly related to disease or treatment status. Symptoms not identified by patients as PS were frequently documented by clinicians; these symptoms tended to relate to physiologic effects of disease and treatment toxicity. 58% of patients had at least one PS intervention. PS intervened for were documented at 2.58 visits vs 0.50 visits for PS not receiving intervention (p≤0.0001). CONCLUSIONS: Discordance was identified between symptoms reported by patients as important and symptoms documented by clinicians. Symptoms more frequently documented were also more frequently intervened for. Our study illustrates the need to improve identification of symptoms important to patients, and suggests that improving communication between patients and clinicians could increase intervention rates to enhance quality of life in women with recurrent ovarian cancer.


Subject(s)
Neoplasm Recurrence, Local/therapy , Ovarian Neoplasms/therapy , Adult , Aged , Female , Humans , Middle Aged , Neoplasm Recurrence, Local/psychology , Ovarian Neoplasms/psychology , Quality of Life , Retrospective Studies
17.
J Neurooncol ; 128(1): 109-118, 2016 05.
Article in English | MEDLINE | ID: mdl-26907491

ABSTRACT

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.


Subject(s)
Caregivers/psychology , Inflammation/epidemiology , Neoplasms/therapy , Adult , Age Factors , Anxiety/blood , Anxiety/complications , Anxiety/immunology , Biomarkers/blood , Cost of Illness , Depression/blood , Depression/complications , Depression/immunology , Female , Humans , Inflammation/blood , Inflammation/psychology , Interleukin 1 Receptor Antagonist Protein/blood , Interleukin-6/blood , Longitudinal Studies , Male , Middle Aged , Obesity/blood , Obesity/complications , Obesity/immunology , Obesity/psychology , Risk Factors , Self Concept , Sex Factors , Stress, Psychological/blood , Stress, Psychological/complications , Stress, Psychological/immunology , Time Factors
18.
Support Care Cancer ; 24(6): 2635-42, 2016 06.
Article in English | MEDLINE | ID: mdl-26746209

ABSTRACT

PURPOSE: Nausea is a common and potentially serious effect of cytotoxic chemotherapy for recurrent ovarian cancer and may function as a sentinel symptom reflecting adverse effects on the gut-brain axis (GBA) more generally, but research is scant. As a first exploratory test of this GBA hypothesis, we compared women reporting nausea to women not reporting nausea with regard to the severity of other commonly reported symptoms in this patient population. METHODS: A secondary analysis of data systematically collected from women in active chemotherapy treatment for recurrent ovarian cancer (n = 158) was conducted. The Symptom Representation Questionnaire (SRQ) provided severity ratings for 22 common symptoms related to cancer and chemotherapy. Independent sample t tests and regression analyses were used to compare women with and without nausea with regard to their experience of other symptoms. RESULTS: Nausea was reported by 89 (56.2 %) women. Symptoms that were significantly associated with nausea in bivariate and regression analyses included abdominal bloating, bowel disturbances, dizziness, depression, drowsiness, fatigue, headache, lack of appetite, memory problems, mood swings, shortness of breath, pain, sleep disturbance, urinary problems, vomiting, and weight loss. Symptoms that were not associated with nausea included hair loss, numbness and tingling, sexuality concerns, and weight gain. CONCLUSIONS: Nausea experienced during chemotherapy for recurrent ovarian cancer may be an indicator of broader effects on the gut-brain axis. A better understanding of the mechanisms underlying these effects could lead to the development of novel supportive therapies to increase the tolerability and effectiveness of cancer treatment.


Subject(s)
Antineoplastic Agents/adverse effects , Brain/drug effects , Enteric Nervous System/drug effects , Gastrointestinal Tract/drug effects , Nausea/chemically induced , Neoplasm Recurrence, Local/drug therapy , Ovarian Neoplasms/drug therapy , Female , Humans , Middle Aged , Nausea/drug therapy , Surveys and Questionnaires , Vomiting/chemically induced , Vomiting/drug therapy
19.
Int J Gynecol Cancer ; 24(5): 865-73, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24844220

ABSTRACT

OBJECTIVE: The aim of this study was to determine the optimal patient-reported outcome measure (PROM) for assessing symptom benefit in trials of palliative chemotherapy for women with symptomatic ovarian cancer. METHODS: Candidate PROMs were EORTC QLQ-C30 plus ovarian-specific QLQ-OV28, Functional Assessment of Cancer Therapy-Ovarian (FACT-O), FACT Ovarian Symptom Index (FOSI), and gynecologic cancer-specific Symptom Representation Questionnaire. Predefined optimality criteria were inclusion of all symptoms necessary for the specified purpose, recall period covering typical length of palliative chemotherapy, numerical item rating scales, and all necessary symptoms included in a single symptom index. Qualitative and quantitative methods were applied to data from stage 1 of the Gynecologic Cancer Intergroup Symptom Benefit Study to determine the set of necessary symptoms and to objectively assess candidate PROMs against the optimality criteria. RESULTS: Ten necessary symptoms were identified: pain, fatigue, abdominal bloating/discomfort, sleep disturbance, bowel disturbance, nausea and vomiting, shortness of breath, poor appetite, urinary symptoms, and weight changes. Although QLQ-C30 and QLQ-OV28 together cover all these symptoms, they split them into numerous scales, dissipating potential symptom-benefit signal. Conversely, FACT-O does not cover all necessary symptoms and contains many other HRQoL-related items and treatment side effects, diluting potential symptom-benefit signal when summed into scales. Item response scales and composite scoring of all candidate PROMs were suboptimal to our specific purpose. We therefore developed a new PROM, the Measure of Ovarian Symptoms and Treatment (MOST) concerns, to provide optimal measurement for the specified purpose. CONCLUSIONS: This article documents the development of the MOST, a new PROM designed to assess patient-reported benefits and burden as end points in clinical trials of palliative chemotherapy for women with symptomatic ovarian cancer. The validity, reliability, and statistical efficiency of the MOST, relative to the best candidate scales of existing PROMs, will be assessed in the stage 2 of Gynecologic Cancer Intergroup Symptom Benefit Study.


Subject(s)
Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Neoplasm Recurrence, Local/drug therapy , Outcome Assessment, Health Care , Ovarian Neoplasms/drug therapy , Patient Outcome Assessment , Quality of Life , Severity of Illness Index , Aged , Aged, 80 and over , Female , Follow-Up Studies , Humans , Middle Aged , Neoplasm Recurrence, Local/pathology , Neoplasm Staging , Ovarian Neoplasms/pathology , Palliative Care , Surveys and Questionnaires
20.
JMIR Cancer ; 10: e48465, 2024 Oct 03.
Article in English | MEDLINE | ID: mdl-39361371

ABSTRACT

BACKGROUND: Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads. OBJECTIVE: We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers. METHODS: We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified "closest support person" (caregiver). A semistructured focus group guide was used to elicit information on patients' and caregivers' perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups. RESULTS: A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1-gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2-desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3-interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others' knowledge; patients and caregivers desire having control over sharing of information with other family members. CONCLUSIONS: Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers.


Subject(s)
Caregivers , Focus Groups , Genital Neoplasms, Female , Self-Management , Telemedicine , Humans , Female , Caregivers/psychology , Genital Neoplasms, Female/psychology , Genital Neoplasms, Female/therapy , Genital Neoplasms, Female/nursing , Middle Aged , Self-Management/methods , Self-Management/psychology , Adult , Aged , Male , Mobile Applications
SELECTION OF CITATIONS
SEARCH DETAIL