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1.
Support Care Cancer ; 32(5): 298, 2024 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-38639810

RESUMO

PURPOSE: Colorectal cancer (CRC) incidence and mortality are increasing among young adults (YAs) aged 18-39. This study compared quality of life (QOL) between YA and older adult CRC survivors in the ColoCare Study. METHODS: Participants were grouped by age (years) as follows: 18-39 (YA), 40-49, 50-64, and 65 + . Functional QOL (physical, social, role, emotional, cognitive) and global QOL were assessed with the EORTC-QLQ-C30 at enrollment, 3, 6, and 12 months. Average scores were compared between groups over time using longitudinal mixed-effect modeling. Proportions with clinically meaningful QOL impairment were calculated using age-relevant thresholds and compared between groups over time using logistic regression with mixed effects. RESULTS: Participants (N = 1590) were n = 81 YAs, n = 196 aged 40-49, n = 627 aged 50-64, and n = 686 aged 65 + . Average physical function was better among YAs than participants aged 50-64 (p = 0.010) and 65 + (p < 0.001), and average social function was worse among YAs than aged 65 + (p = 0.046). Relative to YAs, all age groups were less likely to report clinically meaningful social dysfunction (aged 40-49 OR = 0.13, 95%CI = 0.06-0.29; aged 50-64 OR = 0.10, 95%CI = 0.05-0.21; aged 65 + OR = 0.07, 95%CI = 0.04-0.15) and role dysfunction (aged 40-49 OR = 0.36, 95%CI = 0.18-0.75; aged 50-64 OR = 0.41, 95%CI = 0.22-0.78; aged 65 + OR = 0.32, 95%CI = 0.17-0.61). Participants aged 40-49 were also less likely to report physical dysfunction (OR = 0.42, 95%CI = 0.19-0.93). CONCLUSION: YA CRC survivors reported better physical and worse social function compared to older CRC survivors, and YA CRC survivors were more likely to report clinically meaningful social, role, and physical disfunction. Future work should further investigate QOL using age-relevant benchmarks to inform best practices for CRC survivorship care. TRIAL REGISTRATION: NCT02328677, registered December 2014.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais , Idoso , Humanos , Adulto Jovem , Sobreviventes de Câncer/psicologia , Neoplasias Colorretais/terapia , Neoplasias Colorretais/psicologia , Emoções , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adolescente , Adulto , Pessoa de Meia-Idade
2.
Support Care Cancer ; 32(4): 258, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38558321

RESUMO

INTRODUCTION: Symptoms during cancer treatment cause burden, diminished physical functioning, and poor quality of life. Exercise is recommended during treatment to mitigate symptoms; however, interventions are difficult to translate into clinical care due to the lack of patient uptake and clinical implementation barriers. We evaluated the uptake, acceptability, and impact of an automated ePRO exercise module triggered by three patient-reported symptoms: nausea/vomiting, fatigue, and anxiety, during chemotherapy. METHODS: We conducted a secondary analysis of an exercise module intervention imbedded in the cancer symptom monitoring and management platform, Symptom Care at Home (SCH). Utilizing behavioral economics principles, the exercise module was triggered when any of the three symptoms were reported. Once triggered, participants were coached on exercise benefits for symptom reduction and then offered the opportunity to set weekly exercise goals plus tracking of the goal outcomes and receive further encouragement. We examined uptake, exercise goal setting and attainment, and symptom impact. RESULTS: Of 180 SCH participants receiving the SCH intervention, 170 (94.4%) triggered the exercise module and 102 of the 170 (60%) accepted the module, setting goals on average for 6.3 weeks. Of 102 participants, 82 (80.4%) achieved one or more exercise goals, exercising on average 79.8 min/week. Participants who achieved a higher proportion of goals had statistically significant lower overall symptom severity and lower severity of the triggered symptom. CONCLUSION: An automated mHealth exercise coaching intervention, aimed to nudge those receiving chemotherapy to initiate an exercise routine had significant uptake, is acceptable and may reduce symptom severity. TRIAL REGISTRATION: NCT01973946.


Assuntos
Tutoria , Neoplasias , Humanos , Exercício Físico , Neoplasias/tratamento farmacológico , Neoplasias/complicações , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida
3.
Cancer ; 130(7): 1171-1182, 2024 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-38009953

RESUMO

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.


Assuntos
Luto , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Tutoria , Neoplasias , Feminino , Humanos , Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/terapia
4.
J Am Med Dir Assoc ; 25(4): 610-613, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37541650

RESUMO

OBJECTIVES: In a real-world trial, we previously demonstrated that Huntsman at Home, a novel oncology hospital at home program, was associated with reduced health care utilization and costs. In this study, we sought to understand the impact of Huntsman at Home in specific patient subgroups defined by sex, age, area-level median income, Charlson Comorbidity Index, and current use of systemic anticancer therapy. DESIGN: Retrospective case-control study of the Huntsman Cancer Institute. Electronic Data Warehouse of patients enrolled in Huntsman at Home between August 2018 through October 2019 vs usual-care patients. SETTING AND PARTICIPANTS: A total of 169 patients admitted to Huntsman at Home compared with 198 usual-care patients. METHODS: Five dichotomous subgroups evaluated including sex (female vs male), age (≥65 vs <65), income (≥$78,735 vs <$78,735), Charlson Comorbidity Index (≥2 vs <2), and current systemic anticancer therapy use vs no current systemic anticancer therapy. Groups were compared with patients receiving usual care. Primary outcomes included 30-day costs, hospital length of stay, unplanned hospitalizations, and emergency room visits. RESULTS: Admission to Huntsman at Home was associated with an overall reduction across all 4 health care cost and utilization outcomes. Outcomes favoring admission to Huntsman at Home achieved statistical significance (P < .05) in at least 2 of the 4 outcomes for each subgroup studied. Of the subgroups that did not achieve statistically significant benefit from Huntsman at Home admission in some outcome categories, none of these subgroups favored usual care. CONCLUSIONS AND IMPLICATIONS: Admission to Huntsman at Home decreased utilization of unplanned health care and reduced costs across a wide spectrum of patient subgroups, suggesting overall consistent benefit from the service. Hospital at home models should be considered as a means by which the quality and efficiency of care can be maximized for patients with cancer.


Assuntos
Custos de Cuidados de Saúde , Hospitalização , Feminino , Humanos , Masculino , Estudos de Casos e Controles , Hospitais , Estudos Retrospectivos , Pessoa de Meia-Idade , Idoso
5.
J Hosp Palliat Nurs ; 25(6): 321-329, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37851960

RESUMO

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs.


Assuntos
Carcinoma Hepatocelular , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias Hepáticas , Humanos , Cuidadores , Incerteza , Estudos Prospectivos , Estudos Retrospectivos
6.
Oncol Nurs Forum ; 50(4): 521-529, 2023 06 15.
Artigo em Inglês | MEDLINE | ID: mdl-37677753

RESUMO

OBJECTIVES: To determine the percentage of and the most prevalent moderate to severe symptoms and to analyze longitudinal patterns and co-occurrence of symptoms during the first three cycles of chemotherapy. SAMPLE & SETTING: A secondary analysis of 26 women with gynecologic cancer who reported daily symptoms. METHODS & VARIABLES: Moderate to severe symptom presence and severity levels were calculated as proportions. Symptoms for each patient were graphed during three cycles and analyzed for patterns of onset, duration, and clustering. RESULTS: Patients completed 1,562 calls to the remote symptom monitoring system. The most commonly reported moderate to severe symptoms were pain, fatigue, and trouble sleeping. Pain and fatigue co-occurred with trouble sleeping in one symptom pattern. Patterns included no moderate to severe symptoms, moderate to severe symptoms during one cycle, moderate to severe symptoms during two cycles, and moderate to severe symptoms during all cycles. IMPLICATIONS FOR NURSING: Nurses should consistently assess symptoms across cycles. To verify distinct classes of symptoms and better target interventions, further study is warranted.


Assuntos
Neoplasias dos Genitais Femininos , Telemedicina , Humanos , Feminino , Neoplasias dos Genitais Femininos/tratamento farmacológico , Fadiga/induzido quimicamente , Dor , Medidas de Resultados Relatados pelo Paciente
7.
Oncol Nurs Forum ; 50(5): 665-670, 2023 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-37677767

RESUMO

OBJECTIVES: To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving. SAMPLE & SETTING: Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis. METHODS & VARIABLES: Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions. RESULTS: Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age. IMPLICATIONS FOR NURSING: Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.


Assuntos
Hospitais para Doentes Terminais , Neoplasias , Feminino , Humanos , Cuidadores , Sobrecarga do Cuidador , Estudos Longitudinais , Local de Trabalho
8.
Colorectal Dis ; 25(10): 2054-2063, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37700526

RESUMO

AIM: This study sought to identify groups of colorectal cancer patients based upon trajectories of fatigue and examine how demographic, clinical and behavioural risk factors differentiate these groups. METHOD: Patients were from six cancer centres in the United States and Germany. Fatigue was measured using the fatigue subscale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) at five time points (baseline/enrolment and 3, 6, 12 and 24 months after diagnosis). Piecewise growth mixture models identified latent trajectories of fatigue. Logistic regression models examined differences in demographic, clinical and behavioural characteristics between fatigue trajectory groups. RESULTS: Among 1615 participants (57% men, 86% non-Hispanic White, mean age 61 ± 13 years at diagnosis), three distinct groups were identified. In the high fatigue group (36%), fatigue significantly increased in the first 6 months after diagnosis and then showed statistically and clinically significant improvement from 6 to 24 months (P values < 0.01). Throughout the study period, average fatigue met or exceeded cutoffs for clinical significance. In the moderate (34%) and low (30%) fatigue groups, fatigue levels remained below or near population norms across the study period. Patients who were diagnosed with Stage II-IV disease and/or current smokers were more likely to be in the high fatigue than in the moderate fatigue group (P values < 0.05). CONCLUSION: A large proportion of colorectal cancer patients experienced sustained fatigue after initiation of cancer treatment. Patients with high fatigue at the time of diagnosis may benefit from early supportive care.


Assuntos
Neoplasias Colorretais , Qualidade de Vida , Masculino , Humanos , Pessoa de Meia-Idade , Idoso , Feminino , Fadiga/etiologia , Fadiga/epidemiologia , Neoplasias Colorretais/complicações , Neoplasias Colorretais/diagnóstico , Fatores de Risco , Alemanha/epidemiologia , Inquéritos e Questionários
9.
J Natl Compr Canc Netw ; 21(8): 792-803, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37549906

RESUMO

The NCCN Guidelines for Survivorship are intended to help healthcare professionals address the complex and varied needs of cancer survivors. The NCCN Guidelines provide screening, evaluation, and treatment recommendations for psychosocial and physical problems resulting from adult-onset cancer and its treatment; recommendations to help promote healthy behaviors and immunizations in survivors; and a framework for care coordination. These NCCN Guidelines Insights summarize recent guideline updates and panel discussions pertaining to sleep disorders, fatigue, and cognitive function in cancer survivors.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Humanos , Sobrevivência , Neoplasias/diagnóstico , Neoplasias/terapia , Neoplasias/psicologia , Sobreviventes , Sobreviventes de Câncer/psicologia , Imunização
10.
Contemp Clin Trials ; 131: 107276, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37393004

RESUMO

BACKGROUND: Children of parents who had melanoma are more likely to develop skin cancer themselves owing to shared familial risks. The prevention of sunburns and promotion of sun-protective behaviors are essential to control cancer among these children. The Family Lifestyles, Actions and Risk Education (FLARE) intervention will be delivered as part of a randomized controlled trial to support parent-child collaboration to improve sun safety outcomes among children of melanoma survivors. METHODS: FLARE is a two-arm randomized controlled trial design that will recruit dyads comprised of a parent who is a melanoma survivor and their child (aged 8-17 years). Dyads will be randomized to receive FLARE or standard skin cancer prevention education, which both entail 3 telehealth sessions with an interventionist. FLARE is guided by Social-Cognitive and Protection Motivation theories to target child sun protection behaviors through parent and child perceived risk for melanoma, problem-solving skills, and development of a family skin protection action plan to promote positive modeling of sun protection behaviors. At multiple assessments through one-year post-baseline, parents and children complete surveys to assess frequency of reported child sunburns, child sun protection behaviors and melanin-induced surface skin color change, and potential mediators of intervention effects (e.g., parent-child modeling). CONCLUSION: The FLARE trial addresses the need for melanoma preventive interventions for children with familial risk for the disease. If efficacious, FLARE could help to mitigate familial risk for melanoma among these children by teaching practices which, if enacted, decrease sunburn occurrence and improve children's use of well-established sun protection strategies.


Assuntos
Sobreviventes de Câncer , Melanoma , Neoplasias Cutâneas , Queimadura Solar , Humanos , Queimadura Solar/prevenção & controle , Queimadura Solar/tratamento farmacológico , Protetores Solares/uso terapêutico , Predisposição Genética para Doença , Melanoma/prevenção & controle , Melanoma/psicologia , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Comportamentos Relacionados com a Saúde , Estilo de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
J Hosp Palliat Nurs ; 25(5): 286-295, 2023 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-37347956

RESUMO

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Masculino , Humanos , Feminino , Saúde Mental , Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Atividades Cotidianas , Autocuidado , Apoio Social , Neoplasias/terapia , Neoplasias/psicologia
12.
J Pain Symptom Manage ; 66(1): 33-43, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36889453

RESUMO

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity. METHODS: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse. RESULTS: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC. CONCLUSION: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Telemedicina , Humanos , Cuidadores/psicologia , Neoplasias/terapia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos , Qualidade de Vida
13.
J Palliat Med ; 26(7): 941-950, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36799950

RESUMO

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health (ß = -0.82 [-1.22 to -0.42], p < 0.001), positive affect and well-being scores (ß = -0.69 [-1.03 to -0.36], p < 0.001), and higher depression (ß = 0.24 [0.12-0.37], p < 0.001) and anxiety scores (ß = 0.22 [0.07-0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (ß = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (ß = 0.45 [0.06 to 0.84], p < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Ansiedade , Cônjuges
14.
J Geriatr Oncol ; 14(2): 101414, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36503882

RESUMO

INTRODUCTION: Adults 65 years of age or older with metastatic cancer face complicated treatment decisions. Few studies have explored the process with oncology clinicians during clinic encounters. Our exploratory study evaluated whether symptom burden or functional status impacted treatment decision conversations between older adults, caregivers, and oncology clinicians in a single National Cancer Institute within the Mountain West region. MATERIALS AND METHODS: We conducted an observational, convergent mixed methods longitudinal study between November 2019 and January 2021; participants were followed for six months. The MD Anderson Symptom Inventory (MDASI) and Katz Index of Independence in Activities of Daily Living (ADL) were administered prior to clinical encounter. Ambulatory clinic encounters were audio recorded, transcribed, and analyzed. Nineteen older adults with a metastatic cancer diagnosis or a relapsed refractory hematologic malignancy were approached to achieve a sample of fifteen participants. The main outcome of interest was the number and quality of treatment decision making conversations, defined broadly and encompassing any interaction between the participant and oncology provider that involved (a) an issue or concern (e.g., symptoms, quality of life) brought up by anyone in the room during the clinical encounter, (b) a clinician addressing the concern, or (c) the patient or caregiver making a decision that involved a discussion of their goals or treatment preferences. RESULTS: Nine men and six women with a mean age of 71.3 years (6.6; standard deviation [SD]) were enrolled, and four died while on study. Participants were followed from one to ten visits (mean 4.5; SD 2.8) over one to six months. Of the 67 analyzed encounters, seven encounter conversations (10%) were identified as involving any type of treatment decision discussion. The seven treatment decision conversations occurred with five participants, all male (although female participants made up 40% of the sample), and 63% of participants who reported severe symptoms on the MDASI were female. Severe symptoms or functional status did not impact treatment conversations. DISCUSSION: Our results suggest that older adults with incurable cancer and their oncology clinicians do not spontaneously engage in an assessment of costs and benefits to the patient, even in the setting of palliative treatment and significant symptom burden.


Assuntos
Atividades Cotidianas , Qualidade de Vida , Humanos , Masculino , Feminino , Idoso , Estudos Longitudinais , Estado Funcional , Recidiva Local de Neoplasia
15.
J Pain Symptom Manage ; 65(3): 183-192, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36493980

RESUMO

CONTEXT: Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being. OBJECTIVES: 1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms. METHODS: Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes. RESULTS: Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%). CONCLUSION: Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidadores/psicologia , Estudos Prospectivos , Prevalência , Cuidados Paliativos na Terminalidade da Vida/psicologia
16.
Support Care Cancer ; 31(1): 51, 2022 Dec 17.
Artigo em Inglês | MEDLINE | ID: mdl-36526929

RESUMO

Treatment for gynecologic cancer is associated with sexual dysfunction, which may present during and/or after treatment. The aim of this study was to investigate the risk of sexual dysfunction among gynecologic cancer survivors compared to cancer-free women in a population-based cohort study. We identified a cohort of 4863 endometrial, ovarian, and cervical cancer survivors diagnosed between 1997 and 2012 in the Utah Cancer Registry. Up to five cancer-free women were matched to cancer survivors (N = 22,693). We used ICD-9 codes to identify sexual dysfunction. Cox proportional hazards models were used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for sexual dysfunction with adjustment for potential confounders. Approximately 6.6% of gynecologic cancer survivors had sexual dysfunction diagnoses 1-5 years after cancer diagnosis. Gynecologic cancer survivors had higher risks of overall sexual dysfunction (HR: 2.51, 95% CI: 2.16, 2.93), dyspareunia (HR: 3.27, 95% CI: 2.63, 4.06), and vaginal dryness (HR: 2.63, 95% CI: 2.21, 3.12) compared to a general population of women, 1-5 years after cancer diagnosis. Sexual dysfunction was associated with advance cancer stage (HRRegional vs. Localized: 1.61, 95% CI: 1.19, 2.31), radiation therapy (HR: 1.73, 95% CI: 1.29, 2.31), and chemotherapy (HR: 1.80, 95% CI: 1.30, 2.50). This large cohort study confirms that there is an increased risk of sexual dysfunction among gynecologic cancer survivors when compared to the general population. Further investigation is needed to address the risk factors for sexual dysfunction and to improve patient-provider communication, diagnosis, documentation, and treatment of sexual dysfunction among gynecologic cancer survivors.


Assuntos
Sobreviventes de Câncer , Neoplasias dos Genitais Femininos , Disfunções Sexuais Fisiológicas , Feminino , Humanos , Estudos de Coortes , Disfunções Sexuais Fisiológicas/epidemiologia , Disfunções Sexuais Fisiológicas/etiologia , Neoplasias dos Genitais Femininos/complicações , Sobreviventes
17.
Psychol Sex ; 13(4): 901-911, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36439051

RESUMO

The COVID-19 pandemic has intensified the use of online recruitment and data collection for reaching historically underrepresented minorities (URMs) and other diverse groups. Preventing and detecting responses from automated accounts "bots" and those who misrepresent themselves is one challenge in utilizing online approaches. Through internet-mediated methods, interested LGBTQ+ and non-LGBTQ+ couples facing advanced cancer completed an interest form via REDCap®. Eligible participants received a direct link to electronic consent and surveys in REDCap®. Once responses to the interest form (N = 619) were received, the study PI: 1) assessed participants' entries and non-response survey data (time of completion, rate of recruitment, etc.), 2) temporarily postponed recruitment, 3) sent eligibility questionnaires, consent documents, and validated surveys to N= 10 couples and scrutinized these data for suspicious patterns or indications of untrustworthy data, 4) responded to potential participants via email, and 5) implemented additional strategies for detecting and preventing untrustworthy survey responses. Investigators must consider multi-step eligibility screening processes to detect and prevent the collection of untrustworthy data. Investigators' reliance on internet-mediated approaches for conducting research with diverse, hard-to-reach populations increases the importance of addressing threats to data validity. Ultimately, safeguarding internet-mediated research supports research accessibility and inclusion for URMs while also protecting participant data integrity.

18.
J Natl Compr Canc Netw ; 20(10): 1080-1090, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-36240847

RESUMO

The NCCN Guidelines for Survivorship are intended to help healthcare professionals who work with survivors to ensure that the survivors' complex and varied needs are addressed. The NCCN Guidelines provide screening, evaluation, and treatment recommendations for the consequences of adult-onset cancer and its treatment; recommendations to help promote physical activity, weight management, and immunizations in survivors; and a framework for care coordination. This article summarizes updates to the NCCN Guidelines pertaining to preventive health for cancer survivors, including recommendations about alcohol consumption and vaccinations.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Humanos , Imunização , Neoplasias/diagnóstico , Neoplasias/terapia , Sobreviventes , Sobrevivência
19.
Psychooncology ; 31(11): 1860-1868, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36151881

RESUMO

OBJECTIVE: This study examined: (1) Differences among sexual and gender minority (SGM) and non-SGM couples' life course stress, posttraumatic growth (PTG), individual, and dyadic wellbeing while facing cancer, (2) The predictive ability of PTG and life course stress on wellbeing for each dyad member, and (3) The predictive ability of dyad-level PTG and dyad-level life course stress on dyadic wellbeing. METHODS: Thirty SGM and 30 non-SGM dyads (N = 60) completed measures assessing demographics, life course stress, PTG, individual, and dyadic wellbeing. Regression and multilevel models tested predictive hypotheses. RESULTS: Participants were 56.3 years old on average (SD = 13.6) and were together for 24.2 (SD = 14.9) years. SGM participants reported greater life course stress and higher scores on the Depression, Anxiety, and Stress Scales (DASS-21) than non-SGM participants. A dyad members' higher PTG predicted their partners' higher DASS-21 score, dyad members' higher life course stress predicted their own higher DASS-21 score, and patients' higher life course stress predicted their partners' higher DASS-21 score. Greater dyadic PTG predicted greater dyadic wellbeing. CONCLUSIONS: SGM and non-SGM couples experience PTG equally despite SGM couples' greater life course stress and higher DASS-21 scores. Future research is needed to explore how PTG may affect individuals and couples differently.


Assuntos
Neoplasias , Crescimento Psicológico Pós-Traumático , Minorias Sexuais e de Gênero , Humanos , Pessoa de Meia-Idade , Acontecimentos que Mudam a Vida , Comportamento Sexual , Identidade de Gênero
20.
NPJ Digit Med ; 5(1): 117, 2022 Aug 16.
Artigo em Inglês | MEDLINE | ID: mdl-35974092

RESUMO

We present a general framework for developing a machine learning (ML) tool that supports clinician assessment of patient risk using electronic health record-derived real-world data and apply the framework to a quality improvement use case in an oncology setting to identify patients at risk for a near-term (60 day) emergency department (ED) visit who could potentially be eligible for a home-based acute care program. Framework steps include defining clinical quality improvement goals, model development and validation, bias assessment, retrospective and prospective validation, and deployment in clinical workflow. In the retrospective analysis for the use case, 8% of patient encounters were associated with a high risk (pre-defined as predicted probability ≥20%) for a near-term ED visit by the patient. Positive predictive value (PPV) and negative predictive value (NPV) for future ED events was 26% and 91%, respectively. Odds ratio (OR) of ED visit (high- vs. low-risk) was 3.5 (95% CI: 3.4-3.5). The model appeared to be calibrated across racial, gender, and ethnic groups. In the prospective analysis, 10% of patients were classified as high risk, 76% of whom were confirmed by clinicians as eligible for home-based acute care. PPV and NPV for future ED events was 22% and 95%, respectively. OR of ED visit (high- vs. low-risk) was 5.4 (95% CI: 2.6-11.0). The proposed framework for an ML-based tool that supports clinician assessment of patient risk is a stepwise development approach; we successfully applied the framework to an ED visit risk prediction use case.

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