RESUMEN
PURPOSE: This study describes the development of a screening measure focused on the potential needs of hematopoietic cell transplant (HCT) survivors at least 1-year post-transplant. METHODS: A multidisciplinary team met regularly to develop a screening measure to better understand the ongoing medical and clinical symptoms experienced by survivors of HCT. This measure was given to 299 patients presenting to an HCT survivorship clinic, with referrals offered for any issues reaching clinical threshold. A factor analysis was performed to examine the underlying factor structure of the measure. RESULTS: Analyses indicated a 3-factor underlying structure, including physical, emotional, and practical concerns. Areas most consistently endorsed as ongoing areas of concern included fatigue, financial concerns, and worry about their future. Interestingly, while many patients were interested in referrals for these issues, some patients did not wish to have their symptoms managed at our center. CONCLUSIONS: Survivors of hematopoietic cell transplant continue to experience symptoms well after their treatment has ended, including issues related to the emotional, physical, and practical impact of their illness and treatment regimen. It is vital that their providers understand the frequency of these concerns as well as patients' preference for intervention. IMPLICATIONS FOR CANCER SURVIVORS: While HCT has become increasingly successful in treating hematologic cancers, many survivors experience a range of issues post-transplant. Survivorship care for these patients must include ongoing thorough assessment related to the practical, emotional, and medical symptoms experienced post-transplant, with appropriate intervention provided in-house where possible or in the community according to patient preference.
Asunto(s)
Neoplasias Hematológicas , Trasplante de Células Madre Hematopoyéticas , Neoplasias Hematológicas/terapia , Humanos , Sobrevivientes/psicología , SupervivenciaRESUMEN
PURPOSE: To explore the experiences and needs of African American (AA) children and adolescents who were identified by a cancer survivor in their family as providing substantial supportive care during diagnosis and treatment. PARTICIPANTS & SETTING: 5 AA young adults who provided care and support to a family member with cancer when they were aged 7-19 years and 4 cancer survivors from a northeastern U.S. city. METHODOLOGIC APPROACH: Focus groups and interviews were conducted, recorded, transcribed, and analyzed using content analysis until thematic saturation was reached. FINDINGS: Themes focused on AA young supporters' lack of cancer-related information, reduced ability to communicate needs, and challenged views of themselves, relationships, faith, and the future at the time that they provided support. IMPLICATIONS FOR NURSING: Nurses can support AA children and adolescents in caregiving roles by assessing their needs and providing information on diagnosis and treatment. In addition, nurses can conduct research on culturally adapted interventions that can better support AA children and adolescents caring for a parent or grandparent with cancer.
Asunto(s)
Negro o Afroamericano/psicología , Neoplasias de la Mama/psicología , Cuidadores/psicología , Familia/psicología , Psicología del Adolescente , Psicología Infantil , Apoyo Social , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Niño , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , New England , Investigación Cualitativa , Adulto JovenRESUMEN
PURPOSE: Significant cancer-related distress affects 30-60% of women diagnosed with breast cancer. Fewer than 30% of distressed patients receive psychosocial care. Unaddressed distress is associated with poor treatment adherence, reduced quality of life, and increased healthcare costs. This study aimed to evaluate the preliminary efficacy of a new web-based, psychoeducational distress self-management program, CaringGuidance™ After Breast Cancer Diagnosis, on newly diagnosed women's reported distress. METHODS: One-hundred women, in five states, diagnosed with breast cancer within the prior 3 months, were randomized to 12 weeks of independent use of CaringGuidance™ plus usual care or usual care alone. The primary multidimensional outcome, distress, was measured with the Distress Thermometer (DT), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Impact of Events Scale (IES) at baseline and months 1, 2, and 3. Intervention usage was continually monitored by the data analytic system imbedded within CaringGuidance™. RESULTS: Although multilevel models showed no significant overall effects, post hoc analysis showed significant group differences in slopes occurring between study months 2 and 3 on distress (F(1,70) = 4.91, p = .03, η2 = .065) measured by the DT, and depressive symptoms (F(1, 76) = 4.25, p = .043, η2 = .053) favoring the intervention. CONCLUSIONS: Results provide preliminary support for the potential efficacy of CaringGuidance™ plus usual care over usual care alone on distress in women newly diagnosed with breast cancer. This analysis supports and informs future study of this self-management program aimed at filling gaps in clinical distress management.
Asunto(s)
Neoplasias de la Mama/terapia , Depresión/terapia , Psicoterapia/métodos , Estrés Psicológico/terapia , Telemedicina/métodos , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/psicología , Depresión/etiología , Depresión/psicología , Femenino , Humanos , Persona de Mediana Edad , Calidad de Vida/psicología , Automanejo , Estrés Psicológico/etiología , Estrés Psicológico/psicologíaRESUMEN
PURPOSE: Adolescents and young adults (AYAs) with cancer are known to have complex medical and psychosocial needs throughout treatment; however, information is lacking about the challenges AYA survivors face after treatment has ended. Focus groups were conducted using a concept mapping framework to better understand the most important issues these patients face in transitioning to survivorship and how prepared they felt to face them. METHODS: AYAs diagnosed between 18 and 39 years old and at least 2 years post-treatment participated in one of six focus groups based on age group and follow-up status. Using a concept mapping design, participants provided important issues during the transition to survivorship and appraised them on three core areas of interest. RESULTS: Analyses revealed salient themes shared across age and follow-up group status, particularly related to the psychosocial, emotional, and cognitive effects of treatment. Differential concerns included those related to patients' developmental concerns-namely, finding a new identity, financial burden of treatment, and fertility concerns after treatment. CONCLUSIONS: AYA cancer survivors continue to have a myriad of issues beyond the immediate treatment phase. Despite a complex list of challenges, these issues largely remained unaddressed by their oncology provider and left patients feeling overwhelmingly ill-prepared to manage their transition to survivorship. IMPLICATIONS FOR CANCER SURVIVORS: AYA cancer survivors have many unaddressed concerns as they transition out of active cancer treatment, largely related to developmental issues they are facing. Survivorship care for these patients would benefit from care planning that takes these unique concerns into account.
Asunto(s)
Supervivientes de Cáncer , Necesidades y Demandas de Servicios de Salud , Evaluación de Necesidades , Neoplasias/terapia , Adolescente , Adulto , Factores de Edad , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Emociones/fisiología , Femenino , Fertilidad/fisiología , Preservación de la Fertilidad/métodos , Preservación de la Fertilidad/normas , Preservación de la Fertilidad/estadística & datos numéricos , Grupos Focales , Estudios de Seguimiento , Humanos , Masculino , Evaluación de Necesidades/normas , Neoplasias/epidemiología , Neoplasias/psicología , Supervivencia , Adulto JovenRESUMEN
Purpose: Young adult cancer patients have complex medical and psychosocial needs throughout treatment. Once treatment ends, few young adult cancer survivors (YACS) receive adequate survivorship care. Many YACS do not continue with oncology care after treatment ends. The purpose of this study was to discover the views YACS held about survivorship care and to design age-appropriate survivorship care plans (SCPs). Methods: Twenty-seven YACS (n = 27) participated in a group discussion focusing on their post-treatment experience. The concept of SCPs was introduced and participants provided information on how their care was managed after the completion of their treatment, what factors played a role in their oncological follow-up care, and the potential utility of a SCP in the management of their follow-up survivorship care. SCPs were developed for each participant and feedback requested. Results: SCPs required 45-180 minutes to complete. Barriers to continued follow-up included: loss of health insurance, poor communication with their oncologist once treatment ended, and ongoing adjustment challenges to work, school, and home life. YACS requested more support for psychosocial issues post-treatment, and more information about long- and late-term side effects from treatment. Conclusions: Further research in the utility of SCPs among YACS is warranted as they may have a significant role for YACS. Information on long- and late-term side effects, follow-up care schedule, psychosocial support, and adolescent and young adult-specific resources must be clearly delineated in SCPs.
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Supervivientes de Cáncer/psicología , Prioridades en Salud , Necesidades y Demandas de Servicios de Salud , Adaptación Psicológica , Adolescente , Adulto , Cuidados Posteriores , Femenino , Humanos , Cobertura del Seguro , Seguro de Salud , Masculino , Oncólogos , Relaciones Médico-Paciente , Proyectos Piloto , Sistemas de Apoyo Psicosocial , Reino Unido , Adulto JovenRESUMEN
PURPOSE: The purpose of this study is to develop a brief measure of problem areas experienced by patients following primary treatment for breast cancer. METHOD: Systematic reviews of the quantitative and qualitative literature were used to inform selection of scale items using (1) valid and reliable items from a national item bank (patient reported outcomes measurement information system [PROMIS]), (2) existing scales from prior breast cancer survivorship research, or (3) items developed by the investigators. RESULTS: Participants (n = 400) were on average 51 years old, highly educated, Caucasian, diagnosed with stage I-III breast cancer, and a median of 1.96 years post-primary treatment. Principal component analysis on a random sample (n = 200) and confirmation on a second random sample (n = 200) indicated that each of the scales under consideration provided a significant measurement model for the symptom burden (CFI = 0.95), health behavior (CFI = 1.00), functional limitation (CFI = 0.99), health care seeking skill (CFI = 0.98), and cancer-related financial strain (CFI = 1.00) broad domains. The median Cronbach's alpha was 0.91. The measure demonstrated convergent, divergent, construct, and clinical validity. Lower levels of fatigue (ß = 0.251. p < 0.000) and pain (ß = 0.221, p < 0.000) and greater health competence (ß = 0.278, p < 0.000) and physical activity (ß = 0.165, p < 0.000) were associated with self-rated global health (F = 60.43, p < 0.000). The final measure consists of 73 items and requires approximately 15 min to complete. DISCUSSION: The Cancer Survivor Profile (CSPro) provides a profile of problem areas supported by epidemiological and qualitative research on unmet needs of breast cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Breast cancer survivors can use the CSPro to prioritize problem areas following cancer treatment.
Asunto(s)
Neoplasias de la Mama/rehabilitación , Evaluación de Necesidades , Terapia Neoadyuvante/estadística & datos numéricos , Sobrevivientes/estadística & datos numéricos , Adulto , Neoplasias de la Mama/complicaciones , Neoplasias de la Mama/epidemiología , Encuestas sobre Dietas , Fatiga/complicaciones , Fatiga/epidemiología , Fatiga/terapia , Femenino , Conductas Relacionadas con la Salud , Humanos , Persona de Mediana Edad , Calidad de Vida , Encuestas y Cuestionarios , Sobrevivientes/psicologíaRESUMEN
Confronted with the complexities inherent in delivering palliative care, effective collaboration with referring staff becomes vital. Based on the evaluation of the physical and psychosocial concerns of patients, the goal of palliative care is to craft interventions that maintain quality of life in the face of increasing symptoms and deteriorating functional status. The project's goal was to increase the appropriateness of referrals to palliative care by the primary services in the hospital. The aim was to achieve this by developing a process to assess patient functioning in critical psychosocial and functional areas, and providing this data to referring medical staff to educate them on the contribution of palliative care to symptom control and patient quality of life. The findings show that referrals to palliative care have increased over 100% from a broader range of services since initiating this project. Assessment data has been collected on 165 patients and outcomes are discussed.
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Prestación Integrada de Atención de Salud/organización & administración , Cuerpo Médico de Hospitales/organización & administración , Cuidados Paliativos/organización & administración , Mejoramiento de la Calidad , Derivación y Consulta/organización & administración , Conducta Cooperativa , Femenino , Humanos , Masculino , Oncología Médica/métodos , Oncología Médica/organización & administración , Cuerpo Médico de Hospitales/educación , Neoplasias/terapia , Calidad de VidaRESUMEN
Unsupportive social interactions (USIs) experienced by people with cancer negatively affect psychological well-being. Forty-five interviews with 26 women were analyzed using directed content analysis to explore USIs experienced during the stressful pretreatment and early postsurgical periods after early-stage breast cancer diagnosis. Cognitive, emotional, and behavioral responses to USIs were also explored. Seventy incidents of USIs were identified within the interviews and grouped into four previously defined and five additional categories. Anxiety, avoiding future interactions, and nondisclosure of thoughts and feelings were typical responses to USIs. These responses hold implications for women's psychological well-being and need for future interventions and research.
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Actitud Frente a la Salud , Neoplasias de la Mama/psicología , Neoplasias de la Mama/terapia , Relaciones Médico-Paciente , Apoyo Social , Adaptación Psicológica , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad , Neoplasias de la Mama/diagnóstico , Femenino , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Estrés Psicológico/psicología , Factores de TiempoRESUMEN
BACKGROUND: Psychological adjustment may not be achieved by some women even years after breast cancer diagnosis. Although level of adjustment to diagnosis in the earliest (pretreatment) period is associated with future adjustment, limited research has explored this early period. Greater knowledge of women's thoughts and behaviors as adjustment is initiated is needed to target interventions for women at risk for future adjustment problems. OBJECTIVES: This study was intended to expand what is known about the pretreatment experiences, thought processes, and behaviors of women diagnosed with breast cancer and further define concepts and increase the scope of Acclimating to Breast Cancer, a grounded theory of adjustment in the pretreatment period. METHODS: Forty-five semistructured interviews were conducted with 26 women prior to and again within 30 days after breast cancer surgery. Women were 39 to 81 years old with stage 0 to stage II disease and primarily varied from the original sample geographically and on length of, and care coordination during, the pretreatment period. A multidisciplinary team performed directed content analysis, comparing new data to the original theory. RESULTS: Although generally consistent with the original theory, findings contributed to renaming 1 and adding 2 theory categories plus expanding 7 of 8 existing categories. Additional personal and situational influences on the process were identified. CONCLUSION: The grounded theory of Acclimating to Breast Cancer was modified with new data from women currently experiencing the pretreatment period following diagnosis. IMPLICATIONS FOR PRACTICE: This theory modification provides a framework to guide needed assessment, psychoeducation, and research aimed at supporting psychological adjustment during the pretreatment period.