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1.
Support Care Cancer ; 2020 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-31916007

RESUMO

PURPOSE: Cancer has long-term financial consequences. Adolescent and young adult (AYA) and middle-aged cancer survivors may experience more financial toxicity than older adults. This study examined age differences in financial distress in hematopoietic cell transplant survivors and whether these differences result from measurement bias, more financial barriers to care, or an overall higher level of distress. METHODS: Hematologic malignancy survivors (n = 1135, 2-10 years post-transplant) completed the Cancer and Treatment Distress Scale (CTXD) and demographics as part of the baseline assessment for a randomized clinical trial. The CTXD has seven subscales, but for this study, we examined the financial distress subscale and the overall score. Item response theory analyses tested for bias by age and gender. Multivariate linear regression tested the association of age and gender with the CTXD scores while controlling for financial barriers to care. RESULTS: No bias was found on the CTXD. AYA (p < 0.01) and middle-aged adults (p < 0.001) reported more financial and overall distress than older (age 65+) adults. The same association of age and financial distress was observed in women (p < 0.01). However, only middle-aged men (p < 0.01) reported more financial and overall distress than older men; AYA men did not (p > 0.18). Financial barriers to care were not associated with financial or overall distress. CONCLUSIONS: Part of the increase in financial distress with younger age may be due to a higher risk of general distress. Policy initiatives to control cancer costs should consider life stage and the unique financial challenges at different ages for men and women.

2.
Biol Blood Marrow Transplant ; 26(2): 407-412, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31605822

RESUMO

Although autologous hematopoietic cell transplantation (AHCT) is standard therapy for patients with lymphoma and multiple myeloma (MM), few studies have addressed late effects and quality of life (QoL) in long-term survivors after AHCT. Using long-term follow-up (LTFU) annual questionnaires with self-reported outcomes, we surveyed 665 patients who were at ≥5 years after AHCT for the diagnosis of lymphoma or MM. Three-hundred and eighty-nine patients completed the questionnaire (58% response rate) at a median of 11 years (range, 5-30 years) after AHCT. The median patient age was 63 years (range, 22-88 years) in the 268 patients with lymphoma and 69 years (range, 34-84 years) in the 121 patients with multiple myeloma. The most commonly reported medical conditions (>10% incidence) were sexual dysfunction, history of shingles, cataracts, osteoporosis or osteopenia, joint replacement, and skin cancer. Current medication use was more frequent in the patients with MM for infection prevention/treatment (19% for MM versus 5% lymphoma; P < .001), hypertension (41% versus 26%; P = .004), osteoporosis (23% versus 10%; P < .001), and pain (32% versus 11%, P < .001). Treated hypothyroidism was more common in lymphoma patients. In multivariate analysis combining lymphoma and MM, worse physical functioning was associated with older age, shorter interval since AHCT, comorbidities, relapse, and treatment for depression and/or pain. Worse mental functioning was associated with younger age and treatment for anxiety, depression, or pain. In conclusion, AHCT survivors report generally good QoL but many late effects and symptoms that are potentially amenable to intervention.

3.
Artigo em Inglês | MEDLINE | ID: mdl-31760133

RESUMO

Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (n = 15) of HCT recipients to talk about their thoughts and feelings regarding the transplantation and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/worry (30 instances), fear (20 instances), feeling overloaded/overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/responsibilities (49 instances) such as parenting, work, and treatment-related tasks, and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged, with mentions of positive psychological states, such as optimism and gratitude, and adaptive coping strategies, such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should involve strategies to help caregivers manage symptoms of distress and promote adaptive coping.

4.
Nurs Res ; 68(2): 99-109, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30540700

RESUMO

BACKGROUND: An emphasis on precision health (PH) has stimulated precision medicine studies to focus on the interplay of biological, behavioral, and environmental factors with disease risks, treatments, prognoses, and outcomes affecting health disparities. It is imperative, as well, that improving health equity among underserved populations remains central to the efforts and aims of PH. OBJECTIVES: The aim if this study was to apply the transdisciplinary ConNECT Framework: A Model for Advancing Behavioral Medicine Science and Practice to Foster Health Equity to PH by integrating a population health agenda for reducing health disparities. METHODS: There are five ConNECT principles: (a) integrating context; (b) fostering a norm of inclusion; (c) ensuring equitable diffusion of innovations; (d) harnessing communication technology; and (e) prioritizing specialized training as an organizing framework to PH, including examples of how to integrate behavioral and socioecological determinants to better understand the contexts of individuals, systems, and place to design targeted treatments and interventions. RESULTS: We describe proactive, actionable strategies for the systematic application of ConNECT Framework principles to address health equity via the PH initiative. Context and implications for nursing research and practice are also described. DISCUSSION: The ConNECT Framework emphasizes that diversity inclusion is imperative for true population health benefit from PH, broadly in public health, behavioral medicine, medicine, and nursing, to equip health researchers and practitioners to account for contextual socioecologic data that can be aligned with biologic data for more population responsive and individually tailored interventions to prevent, diagnose, and treat diseases.


Assuntos
Equidade em Saúde/normas , Disparidades em Assistência à Saúde/normas , Pesquisa em Enfermagem/normas , Medicina de Precisão/enfermagem , Atenção Primária à Saúde/normas , Humanos , Comunicação Interdisciplinar
5.
Biol Blood Marrow Transplant ; 24(8): 1692-1698, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29753161

RESUMO

In a secondary analysis of a randomized controlled trial (RCT), we examined participants' engagement with INSPIRE, a personalized online program for hematopoietic cell transplantation (HCT) survivors that focuses on cancer-related distress, depression, fatigue, and health care needs. We approached all adult, 3- to 18-year HCT survivors treated for hematologic malignancy without relapse or second cancer in the previous 2 years for participation in an RCT with either immediate or delayed access to INSPIRE. Participants with immediate access could view the online material at any time. Data included page view tracking, medical records, and patient-reported outcomes, including the Short Form 36 and Cancer and Treatment Distress (CTXD) measures. Of 1322 eligible HCT survivors, 771 (58%) completed the baseline assessment, and 451 received immediate INSPIRE access and were included in analyses. The cohort was 56% male, with a mean age of 52 ± 12.2 years, and 26% received an autologous transplant. Most (77%) logged into the INSPIRE site at least once, and 48% viewed ≥8 pages. Survivors who viewed ≥2 pages were more likely to be age ≥40 years (relative risk [RR], 1.41; 95% confidence interval [CI], 1.10 to 1.80), to be female (RR, 1.22; 95% CI, 1.07 to 1.40), to have chronic graft-versus-host disease (RR, 1.28; 95% CI, 1.08 to 1.51), to be less than 10 years post-HCT (RR, 1.19; 95% CI, 1.01 to 1.39), and to have moderate CTXD distress (RR, 1.34; 95% CI, 1.14 to 1.57). Engagement did not differ by race, education, income, rural/urban residence, computer experience, donor type, or depression (all P ≥ .50). The INSPIRE online program was widely used, including by those who often have reduced access to care after treatment.


Assuntos
Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas , Software , Sobreviventes/psicologia , Adolescente , Adulto , Fatores Etários , Idoso , Feminino , Promoção da Saúde/métodos , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Fatores Sexuais
6.
J Cancer Surviv ; 12(4): 560-570, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29730827

RESUMO

PURPOSE: This randomized controlled trial examines the efficacy of INSPIRE, an INternet-based Survivorship Program with Information and REsources, with or without problem-solving treatment (PST) telehealth calls, for survivors after hematopoietic cell transplantation (HCT). METHODS: All adult survivors who met eligibility criteria were approached for consent. Participants completed patient-reported outcomes at baseline and 6 months. Those with baseline impaired scores on one or more of the outcomes were randomized to INSPIRE, INSPIRE + PST, or control with delayed INSPIRE access. Outcomes included Cancer and Treatment Distress, Symptom Checklist-90-R Depression, and Fatigue Symptom Inventory. Planned analyses compared arms for mean change in aggregated impaired outcomes and for proportion of participants improved on each outcome. RESULTS: Of 1306 eligible HCT recipients, 755 (58%) participated, and 344 (45%) had one or more impaired scores at baseline. We found no reduction in aggregated outcomes for either intervention (P > 0.3). In analyses of individual outcomes, participants randomized to INSPIRE + PST were more likely to improve in distress than controls (45 vs. 20%, RR 2.3, CI 1.0, 5.1); those randomized to INSPIRE alone were marginally more likely to improve in distress (40 vs. 20%, RR 2.0, CI 0.9, 4.5). CONCLUSIONS: The INSPIRE online intervention demonstrated a marginal benefit for distress that improved with the addition of telehealth PST, particularly for those who viewed the website or were age 40 or older. IMPLICATIONS FOR CANCER SURVIVORS: Online and telehealth programs such as INSPIRE offer opportunities to enhance HCT survivorship outcomes, particularly for mood, though methods would benefit from strategies to improve efficacy.


Assuntos
Sobreviventes de Câncer/psicologia , Terapia Cognitivo-Comportamental/métodos , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas , Resolução de Problemas , Telemedicina/métodos , Adolescente , Adulto , Idoso , Sobreviventes de Câncer/estatística & dados numéricos , Depressão/epidemiologia , Depressão/psicologia , Depressão/terapia , Fadiga/epidemiologia , Fadiga/psicologia , Fadiga/terapia , Feminino , Neoplasias Hematológicas/epidemiologia , Neoplasias Hematológicas/psicologia , Transplante de Células-Tronco Hematopoéticas/estatística & dados numéricos , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Resolução de Problemas/fisiologia , Sobrevivência , Adulto Jovem
7.
Med Clin North Am ; 101(6): 1099-1113, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28992857

RESUMO

Most cancer survivors adjust well to life after cancer but some experience persisting negative mood, such as cancer-related fears, posttraumatic stress, anxiety, or depression. Mood fluctuations may not reach criteria for a clinical diagnosis but subclinical symptoms can interfere with quality of life. Women, adolescents, and young adults are particularly at risk for mood disturbances. Behavioral interventions, such as cognitive behavioral therapy and pharmacologic treatments, can effectively treat these distressing emotions. Much of the research on managing emotional needs after cancer has been completed with breast cancer survivors and more work is needed with diverse groups of survivors.


Assuntos
Ansiedade/epidemiologia , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/psicologia , Depressão/epidemiologia , Adaptação Psicológica , Fatores Etários , Antidepressivos/uso terapêutico , Ansiedade/diagnóstico , Ansiedade/terapia , Terapia Cognitivo-Comportamental , Terapias Complementares , Depressão/diagnóstico , Depressão/terapia , Emoções , Feminino , Humanos , Qualidade de Vida , Fatores de Risco , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Sobreviventes
8.
J Behav Med ; 40(1): 23-38, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27509892

RESUMO

Health disparities persist despite ongoing efforts. Given the United States' rapidly changing demography and socio-cultural diversity, a paradigm shift in behavioral medicine is needed to advance research and interventions focused on health equity. This paper introduces the ConNECT Framework as a model to link the sciences of behavioral medicine and health equity with the goal of achieving equitable health and outcomes in the twenty-first century. We first evaluate the state of health equity efforts in behavioral medicine science and identify key opportunities to advance the field. We then discuss and present actionable recommendations related to ConNECT's five broad and synergistic principles: (1) Integrating Context; (2) Fostering a Norm of Inclusion; (3) Ensuring Equitable Diffusion of Innovations; (4) Harnessing Communication Technology; and (5) Prioritizing Specialized Training. The framework holds significant promise for furthering health equity and ushering in a new and refreshing era of behavioral medicine science and practice.


Assuntos
Medicina do Comportamento/tendências , Equidade em Saúde/tendências , Humanos , Ciências Sociais/organização & administração , Estados Unidos
9.
J Patient Saf ; 13(4): 243-248, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-25706909

RESUMO

OBJECTIVES: Transparent communication after medical error includes disclosing the mistake to the patient, discussing the event with colleagues, and reporting to the institution. Little is known about whether attitudes about these transparency practices are related. Understanding these relationships could inform educational and organizational strategies to promote transparency. METHODS: We analyzed responses of 3038 US and Canadian physicians to a medical error communication survey. We used bivariate correlations, principal components analysis, and linear regression to determine whether and how physician attitudes about transparent communication with patients, peers, and the institution after error were related. RESULTS: Physician attitudes about disclosing errors to patients, peers, and institutions were correlated (all P's < 0.001) and represented 2 principal components analysis factors, namely, communication with patients and communication with peers/institution. Predictors of attitudes supporting transparent communication with patients and peers/institution included female sex, US (vs Canadian) doctors, academic (vs private) practice, the belief that disclosure decreased likelihood of litigation, and the belief that system changes occur after error reporting. In addition, younger physicians, surgeons, and those with previous experience disclosing a serious error were more likely to agree with disclosure to patients. In comparison, doctors who believed that disclosure would decrease patient trust were less likely to agree with error disclosure to patients. Previous disclosure education was associated with attitudes supporting greater transparency with peers/institution. CONCLUSIONS: Physician attitudes about discussing errors with patients, colleagues, and institutions are related. Several predictors of transparency affect all 3 practices and are potentially modifiable by educational and institutional strategies.


Assuntos
Erros Médicos/estatística & dados numéricos , Relações Médico-Paciente/ética , Médicos/ética , Revelação da Verdade/ética , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
10.
Cancer ; 123(8): 1416-1423, 2017 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-27893933

RESUMO

BACKGROUND: Routine monitoring of cancer-related distress is recognized as essential to quality care and mandated by a major accrediting organization. However, to the authors' knowledge, few cancer-specific measures have been developed to date to assess the multiple cancer-related factors contributing to this distress. In the current study, the authors examined the psychometric properties of the Cancer and Treatment Distress (CTXD) measure over time in hematopoietic cell transplantation (HCT) recipients. METHODS: As a secondary analysis of a multicenter randomized controlled clinical trial, adult patients undergoing autologous or allogeneic HCT completed patient-reported outcomes including the CTXD and the Medical Outcomes Study Short Form-36 (SF-36) before transplantation and 100 days and 180 days after HCT. RESULTS: Across 21 transplantation centers, a total of 701 patients consented, underwent transplantation, and were included in the current analyses, 645 of whom were alive at 100 days and 618 of whom were alive at 180 days. Internal consistency reliability was found to be strong for the overall CTXD at the 3 time points: Cronbach alphas (α) were .94, .95, and .95, respectively. Subscale reliability met hypothesized levels of an α>.70 across time, with the lowest reliability noted for the Identity subscale at 180 days (α = .77). Correlations with the SF-36 Mental Health subscale were higher than with the Physical Functioning subscale at each time point, thereby supporting convergent and discriminant validity. Strong correlations of the pretransplantation CTXD with the posttransplantation CTXD and SF-36 Mental Health subscale supported predictive validity. CONCLUSIONS: The CTXD is reliable and valid as a measure of cancer distress both before and after HCT. It may be a useful tool for measuring dimensions of distress and for defining those patients requiring treatment for distress during and after transplantation. Cancer 2017;123:1416-1423. © 2016 American Cancer Society.


Assuntos
Neoplasias/epidemiologia , Neoplasias/psicologia , Psicometria , Estresse Psicológico , Adolescente , Adulto , Idoso , Emoções , Feminino , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Psicometria/métodos , Qualidade de Vida , Fatores Socioeconômicos , Inquéritos e Questionários , Transplante Homólogo , Adulto Jovem
11.
Psychooncology ; 25(5): 529-35, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-26130497

RESUMO

BACKGROUND: This study examines the psychometric properties of a measure of distress specific to cancer and its treatment, as tested in patients receiving hematopoietic cell transplantation (HCT). METHODS: With multicenter enrollment, the Cancer and Treatment Distress (CTXD) measure was administered to adults beginning HCT as part of an assessment that included the Center for Epidemiologic Studies Depression (CESD), Profile of Mood States, and Medical Outcomes Study Short Form 36 (SF-36). RESULTS: From eight transplant centers, 176 of 219 eligible patients completed the assessment. Average age was 46.7 years (SD = 11.9), 59% were male, and the majority were identified as Caucasian (93%). Principal components analysis with the CTXD identified 22 items that loaded onto six factors explaining 69% of the variance: uncertainty, health burden, identity, medical demands, finances, and family strain. Internal consistency reliability for the 22 items was 0.91. The receiver operating characteristic area under the curve was 0.85 (95% CI [0.79, 0.91]), with a cut point of 1.1 resulting in a sensitivity rate of 0.91 and a specificity rate of 0.58. Convergent validity and divergent validity were confirmed with large correlations of the CTXD total score with the CESD, Profile of Mood States, and SF-36 mental health; and a smaller correlation with the SF-36 physical function (r = -0.30). CONCLUSIONS: The CTXD is a reliable and valid measure of distress for HCT recipients and captures nearly all cases of depression on the CESD in addition to detecting distress in those who are not depressed. It has potential value as both a research and clinical screening measure for distress.


Assuntos
Depressão/diagnóstico , Neoplasias/psicologia , Psicometria/estatística & dados numéricos , Estresse Psicológico/diagnóstico , Inquéritos e Questionários , Adulto , Idoso , Depressão/psicologia , Feminino , Transplante de Células-Tronco Hematopoéticas , Humanos , Masculino , Pessoa de Meia-Idade , Curva ROC , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Estresse Psicológico/psicologia
12.
Biol Blood Marrow Transplant ; 22(3): 549-56, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26685773

RESUMO

Hematopoietic cell transplantation (HCT) is associated with impaired physical and psychological functioning for some long-term survivors. A risk prediction model would help clinicians estimate their patients' physical and psychological functioning after HCT and determine when to refer to added supportive care when appropriate. The purpose of the present study was to develop risk prediction models for physical and psychological functioning in HCT survivors. This was a secondary analysis of data from a randomized controlled trial (NCT00799461) that included 3- to 10-year HCT survivors. Risk predictions for physical and psychological functioning were developed by using backward logistic regression. The models were internally validated using bootstrapping techniques. Regression coefficients were converted into easy-to-use risk scores. Finally, the sensitivity, specificity, and positive and negative predictive values of the total risk score were calculated. The analyses included 489 survivors, with a mean age of 45.6 (SD, 12.4) years; 47% were female and with a mean of 6.1 years (SD, 2.0) after transplantation. Younger age, higher body mass index (BMI), no or part-time work, more comorbid diseases, autologous transplantation, and chronic graft-versus-host disease predicted impaired physical functioning. Female gender, younger age, higher BMI, not living with a partner, autologous transplantation, and chronic graft-versus-host disease predicted impaired psychological functioning. Although both models had predictive value for long-term functioning, diagnostic accuracy was moderate. For the physical functioning receiver operating characteristic, area under the curve (AUC) after internal validation was .74 with sensitivity 51.9 and specificity 82.8 at the optimal cut-off. For psychological functioning, AUC after internal validation was .69 with sensitivity 83.3 and specificity 42.9 at the optimal cut-off. We conclude that it is possible to predict long-term physical and psychological functioning with readily accessible, mostly pretransplantation predictors. The accuracy of the risk prediction models can be improved for use in clinical practice, potentially by adding pretransplantation patient-reported functioning and comorbidities.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Saúde Mental , Modelos Psicológicos , Sobreviventes/psicologia , Adolescente , Adulto , Fatores Etários , Idoso , Aloenxertos , Autoenxertos , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Fatores Sexuais
13.
J Clin Oncol ; 32(16): 1703-11, 2014 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-24799497

RESUMO

This review examines evidence for psychological factors that affect pain across the cancer continuum from diagnosis through treatment and long-term survivorship or end of life. Evidence is convincing that emotional distress, depression, anxiety, uncertainty, and hopelessness interact with pain. Unrelieved pain can increase a desire for hastened death. Patients with cancer use many strategies to manage pain, with catastrophizing associated with increased pain and self-efficacy associated with lower pain reports. A variety of psychological and cognitive behavioral treatments can reduce pain severity and interference with function, as indicated in multiple meta-analyses and high-quality randomized controlled trials. Effective methods include education (with coping skills training), hypnosis, cognitive behavioral approaches, and relaxation with imagery. Exercise has been tested extensively in patients with cancer and long-term survivors, but few exercise studies have evaluated pain outcomes. In survivors post-treatment, yoga and hypnosis as well as exercise show promise for controlling pain. Although some of these treatments effectively reduce pain for patients with advanced disease, few have been tested in patients at the end of life. Given the clear indicators that psychological factors affect cancer pain and that psychological and behavioral treatments are effective in reducing varying types of pain for patients with active disease, these methods need further testing in cancer survivors post-treatment and in patients with end-stage disease. Multidisciplinary teams are essential in oncology settings to integrate analgesic care and expertise in psychological and behavioral interventions in standard care for symptom management, including pain.


Assuntos
Terapia Comportamental/métodos , Neoplasias/psicologia , Manejo da Dor/métodos , Manejo da Dor/psicologia , Dor/psicologia , Humanos , Neoplasias/complicações , Dor/etiologia , Qualidade de Vida , Sobreviventes
14.
Clin J Oncol Nurs ; 18(1): 93-101, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24476731

RESUMO

Each phase of the cancer experience profoundly affects patients' lives. Much of the literature has focused on negative consequences of cancer; however, the study of resilience may enable providers to promote more positive psychosocial outcomes before, during, and after the cancer experience. The current review describes the ways in which elements of resilience have been defined and studied at each phase of the cancer continuum. Extensive literature searches were conducted to find studies assessing resilience during one or more stages of the adult cancer continuum. For all phases of the cancer continuum, resilience descriptions included preexisting or baseline characteristics, such as demographics and personal attributes (e.g., optimism, social support), mechanisms of adaptation, such as coping and medical experiences (e.g., positive provider communication), as well as psychosocial outcomes, such as growth and quality of life. Promoting resilience is a critical element of patient psychosocial care. Nurses may enable resilience by recognizing and promoting certain baseline characteristics and optimizing mechanisms of adaptation.


Assuntos
Neoplasias/psicologia , Resiliência Psicológica , Humanos , Neoplasias/terapia , Medição de Risco , Sobreviventes
15.
J Cancer Surviv ; 6(2): 219-28, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22246463

RESUMO

PURPOSE: Clinical trials have demonstrated the benefits of exercise for cancer survivors. This investigation determined the effectiveness and safety of a disseminated community-based exercise program for cancer survivors who had completed treatment. METHODS: Personal trainers from regional YMCAs received training in cancer rehabilitation and supervised twice-a-week, 12-week group exercise sessions for survivors. At baseline and post-program, validated measures assessed patient-reported outcomes (PRO) and physiologic measurements. RESULTS: Data were collected from 221 survivors from 13 YMCA sites and 36 separate classes. All participants had data available at one time point, while matched baseline and post-program PRO and physiologic data were available for 85% (N = 187). Participants with matched data were largely female (82%), with mean age of 58 (range, 28-91 years). Time since diagnosis ranged from 1 to 48 (mean, 5.6 years), and mean time since last treatment was 3.0 (range, 1-33 years). Physiological improvements were significant in systolic (P < 0.001) and diastolic (P = 0.035) blood pressure, upper and lower body strength, the 6-min walk test (P = 0.004), and flexibility (P < 0.001). Participants reported improvements in overall health-related quality of life (P < 0.001), social support (P = 0.019), body pain (P = 0.016), fatigue (P < 0.001), insomnia (P < 0.001), and overall musculoskeletal symptoms (P = <0.001). Few injuries or lymphedema events occurred during classes. CONCLUSIONS: Community-based exercise groups for cancer survivors of mixed diagnoses and ages, who have completed active treatment, have physiologic and psychosocial benefits, and are safe. IMPLICATIONS FOR CANCER SURVIVORS: Survivors may expect significant benefit from participating in a community-based exercise program tailored to meet their individual needs as a survivor.


Assuntos
Exercício , Neoplasias/reabilitação , Neoplasias/terapia , Avaliação de Programas e Projetos de Saúde , Características de Residência , Sobreviventes , Adulto , Idoso , Idoso de 80 Anos ou mais , Fadiga/reabilitação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Qualidade de Vida , Método Simples-Cego , Inquéritos e Questionários , Caminhada
16.
J Cancer Surviv ; 5(3): 292-304, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21544671

RESUMO

INTRODUCTION: The Internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper, we describe the development and implementation of an Internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors. METHODS: A cross-disciplinary team designed, wrote content, and programmed an Internet site for online study registration, consent, assessment, and study implementation. All survivors who were 3-18 years after HSCT for hematologic malignancy and treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired. RESULTS: Of 1,775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD, 12.5; age range, 18-79 years), with 56% male. Fifty-seven percent required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment. DISCUSSIONS/CONCLUSIONS: This study demonstrated the potential for providing Internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship Internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors. IMPLICATIONS FOR CANCER SURVIVORS: While Internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information, and resource needs of cancer survivors.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Internet/estatística & dados numéricos , Neoplasias/terapia , Desenvolvimento de Programas , Taxa de Sobrevida , Sobreviventes , Adolescente , Adulto , Idoso , Assistência à Saúde/métodos , Assistência à Saúde/organização & administração , Feminino , Implementação de Plano de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/reabilitação , Educação de Pacientes como Assunto/métodos , Adulto Jovem
17.
Stress Health ; 26(1): 51-60, 2010 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-20526415

RESUMO

This study investigated the resilience resources and coping profiles of diabetes patients. A total of 145 patients with diabetes completed a questionnaire packet including two measurements of coping (COPE and Coping Styles questionnaires), and personal resources. Glycosylated hemoglobin (HbA(1c)) was also assessed. Resilience was defined by a factor score derived from measures of self-esteem, self-efficacy, self-mastery, and optimism. All of the maladaptive coping subscales were negatively associated with resilience (r's range from -.34 to -.56, all p's <.001). Of the adaptive coping subscales, only acceptance, emotional support, and pragmatism were positively associated with resilience. The upper, middle, and lower tertiles of the resilience factor were identified and the coping profiles of these groups differed significantly, with low resilience patients favoring maladaptive strategies much more than those with high or moderate resilience resources. Resilience groups did not differ in HbA(1c) levels; correlation coefficients of the coping subscales with HbA(1c) were explored. This study demonstrates a link between maladaptive coping and low resilience, suggesting that resilience impacts one's ability to manage the difficult treatment and lifestyle requirements of diabetes.

18.
J Cancer Surviv ; 4(3): 225-35, 2010 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-20454867

RESUMO

INTRODUCTION: Beyond documentation of high prevalence rates, research has not examined the qualities and characteristics of musculoskeletal symptoms in cancer survivors, possibly because measures have not been validated specifically for the assessment of these symptoms in survivors. We report here on a new measure of muscle and joint symptoms for survivors of hematologic malignancies and hematopoietic cell transplantation (HCT). METHODS: In a cross-sectional design, 130 adults, 5-20 years after HCT, completed patient-reported outcomes. Assessment included musculoskeletal symptoms on the Muscle and Joint Measure (MJM), as well as health-related quality of life and treatments. RESULTS: Principal components analysis using promax rotation revealed four subscales for the MJM with item factor loadings above 0.50: muscle aches or stiffness (myalgias), joint pain, stiffness or swelling (arthralgias), muscle cramps, and muscle weakness. Variance explained by the total score was 77%. Internal consistency reliabilities of the subscales and total score ranged from 0.86 to 0.93. Validity was confirmed by correlations with the Short Form-36 bodily pain, physical function and vitality subscales, the Fatigue Symptom Inventory, and the Symptom Checklist-90-R depression (all P < .001). CONCLUSIONS: Musculoskeletal symptoms in survivors who received HCT can be measured reliably and validly with the MJM. The measure requires testing to establish its psychometric properties with other diagnostic and treatment groups. IMPLICATIONS FOR CANCER SURVIVORS: The MJM has potential research and clinical value for addressing the musculoskeletal symptoms of survivors. The measure may assist with examining the mechanisms as well as treatments for these symptoms, which are among the most prevalent in long-term cancer survivors.


Assuntos
Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas , Doenças Musculoesqueléticas/diagnóstico , Sobreviventes , Adolescente , Adulto , Estudos Transversais , Depressão , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Psicometria , Fatores de Risco , Inquéritos e Questionários , Adulto Jovem
19.
Psychooncology ; 19(2): 190-200, 2010 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-19189319

RESUMO

OBJECTIVE: To examine the trajectory of marital adjustment, satisfaction and dissolution among 121 hematopoietic stem cell transplant (HSCT) couples-as a function of role (patient or spouse) and gender. METHODS: Prospective, longitudinal design. Participants completed the Dyadic Adjustment Scale at six time points: pre-transplant (4-7 days after beginning medical workup prior to starting transplant), 6 months post-transplant, and 1, 2, 3 and 5 years post-transplant. They also reported on marital status over time. RESULTS: Participants ranged in age from 23-68 (52% female patients and 48% female spouses). Ninety-eight patients received an allogeneic transplant; 23 received an autologous transplant. Marital dissolution was uncommon (four divorces since the transplant among 55 participating 5-year survivors, 7%). Dyadic satisfaction was stable over time for both male and female patients and male spouses, but not for female spouses who reported reductions in satisfaction at all time points relative to baseline. CONCLUSION: Couples were by and large resilient. However, caregiver-specific gender differences indicate an increased risk for relationship maladjustment and dissatisfaction among female spouses and ultimately, female spouse/male patient couples.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Casamento/psicologia , Satisfação Pessoal , Ajustamento Social , Cônjuges/psicologia , Adulto , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e Questionários
20.
Psychooncology ; 19(5): 462-71, 2010 May.
Artigo em Inglês | MEDLINE | ID: mdl-19358230

RESUMO

OBJECTIVE: Cancer survivors report deficits in social functioning even years after completing treatment. Commonly used measures of social functioning provide incomplete understanding of survivors' social behavior. This study describes social activities of survivors and evaluates the psychometric properties of the Social Activity Log (SAL) in a cohort of long-term survivors of hematopoietic stem cell transplantation (HSCT) for cancer. METHODS: One hundred and two (5-20 year) survivors completed the SAL, Short-Form-36 Health Survey (SF-36), and other patient-reported outcomes. Principal components analysis determined the factor structure of the SAL along with correlations and regressions to establish validity. RESULTS: Principal component analysis yielded three factors in the SAL: 'non-contact events' (e.g. telephone calls), 'regular events' (e.g. played cards), and 'special events' (e.g. concerts), which explained 59% of the total variance. The SAL possessed good internal consistency (Cronbach's alpha=0.82). SF-36 social function and SAL were moderately correlated (r=0.31). In linear regressions, physical function and depression explained 16% of the variance in the SAL (P<0.001), while physical function, depression, and fatigue predicted 55% of the variance in SF-36 social function (P<0.001). CONCLUSIONS: Results support the use of the SAL as a measure of social activity in cancer survivors who received HSCT. Although the SAL is designed to measure social behaviors, SF-36 social function assesses subjective experience and is more strongly associated with depression and fatigue. The SAL appears to be a promising tool to understand the behavioral social deficits reported by long-term survivors of cancer.


Assuntos
Transplante de Células-Tronco Hematopoéticas/métodos , Neoplasias/psicologia , Neoplasias/terapia , Comportamento Social , Sobreviventes/psicologia , Adolescente , Criança , Pré-Escolar , Transtorno Depressivo Maior/epidemiologia , Transtorno Depressivo Maior/etiologia , Transtorno Depressivo Maior/psicologia , Fadiga/epidemiologia , Fadiga/etiologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Psicologia , Sobreviventes/estatística & dados numéricos , Fatores de Tempo , Adulto Jovem
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