Supportive Care Factors Research Articles

Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

BackgroundPatients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity.MethodsTranslation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, healthcare professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau’s model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis.ResultsCultural and linguistic differences were noted between the German and English original version. The focus groups (n = 11) and cognitive interviews (n = 9) both highlighted the need for adapting individual items and their answer options to the German healthcare context. Greater individuality regarding need for information with the right to not be informed was elaborated by patients. While the comprehensive nature of the tool was appreciated, item wording regarding satisfaction with healthcare was deemed not appropriate in the German context. Before implementation into routine care, patients’ concerns about keeping their MyPOS data confidential need to be addressed as a barrier, whereas the MyPOS itself was perceived as a facilitator/prompt for a patient-centred discussion of QoL issues.ConclusionWith adaptations to answer options and certain items, the German version of the MyPOS can help monitor symptoms and problems afflicting myeloma patients over the course of the disease trajectory. It can help promote a model of comprehensive supportive and patient-centred care for these patients.

Abstract C01: Understanding supportive care factors among African American breast cancer survivors

Abstract Introduction: Comprehensive breast cancer care includes not only diagnosis, staging and treatment for cancer, but also assessment and management of the physical, psychological, social, spiritual, and informational needs-collectively known as supportive care. This time frame, largely acknowledged until recently, is commonly referred to as the supportive phase. Several studies have documented the importance of addressing supportive care factors among breast cancer survivors. However, there appears to be a paucity of research concerning African American breast cancer survivors. Purpose: The purpose of this study was to investigate and understand the patient-centered supportive care factors among community-dwelling African American breast cancer survivors. Design/Methods: Via recruitment flyers, supportive groups and word of mouth, 169 women were recruited and screened from breast cancer support groups and community dwellers. One hundred and sixty women were eligible and 155 participated. The inclusion criteria were women who self-identified as African/Black American, age 25 years and older, diagnosed with breast cancer and at least 1 year post-active treatment. As part of a larger study, and using a qualitative descriptive approach, an open-ended questionnaire explored supportive care factors that were utilized by n = 155 African American breast cancer survivors in southern and northern California. Results: The results revealed that the breast cancer survivors age at diagnosis ranged from 31-77 (M = 51.7), and years of survivorship ranged from 1-27 (M = 9.7). Among these women, the four (4) supportive care factors that were considered to be the most helpful and primary during their survivorship trajectory were their faith, supportive structures, being optimistic and having adequate access to information. Conclusion: An understanding of these factors as reported by African American breast cancer survivors might facilitate discussion among members of the oncology care team and this shared dialogue could pave the way for a responsive healthcare model (e.g. survivorship care plans) and targeted intervention of psychosocial resources. The resultant effect could also inform and promote the delivery of culturally specific healthcare to address the supportive care needs among African American breast cancer survivors. Citation Format: Claudia M. Davis. Understanding supportive care factors among African American breast cancer survivors. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr C01.

Understanding Supportive Care Factors Among African American Breast Cancer Survivors.

Comprehensive breast cancer care includes not only diagnosis, staging, and treatment of cancer but also assessment and management of the physical, psychological, social, and informational needs, collectively known as supportive care. Several studies have documented the importance of addressing supportive care factors among breast cancer survivors. However, there appears to be a paucity of research concerning African American breast cancer survivors (AABCS). Therefore, the purpose of this study was to describe and understand the patient-centered supportive care factors among self-identified AABCS. Using a qualitative descriptive approach, an open-ended question explored supportive care factors that were used by N = 155 AABCS. Four supportive care factors were identified: faith, supportive structures, optimism, and access to information. An understanding of these factors might facilitate discussion between survivors and the health care team. The resultant effect could also inform and promote the delivery of culturally specific health care to address the supportive care needs among these women.

Intracranial Pressure Observations in a Canine Model of Acute Liver Failure Supported by a Bioartificial Liver Support System

Life-threatening, severely elevated intracranial pressure (ICP) is a common feature of acute liver failure (ALF). Perfusion with a bioartificial liver may serve to mitigate rising ICP. A retrospective analysis of ICP measurements in a canine ALF model prospectively supported with a bioartificial liver support system (BLSS) is presented. Animals are divided into two groups based upon care provided: (i) standard medical care (n = 6); and (ii) standard medical care plus BLSS support (n = 9). Nonparametric analysis with respect to ICP, arterial NH(3), lactate, and supportive-care parameters found BLSS-supported animals evidenced significantly less metabolic acidosis than unsupported animals. Analysis of variance/linear regression for direct dependence of ICP on arterial NH(3), lactate, and supportive care parameters irrespective of care found ICP was uncorrelated with any measured factor (P > 0.06 for all factors). Lack of correlation of ICP with the considered parameters indicates that none of these factors are predictive of the extent of ICP elevation in the D-galactosamine canine model. Blood chemistry and supportive care factors that are correlated with and predictive of ICP elevation remain to be identified.

Immunoglobulin therapy in bone marrow transplantation

Following ablative treatment with supralethal doses of chemotherapy and total body irradiation, patients demonstrate multiple immunologic deficiencies after bone marrow transplantation. Immune function usually recovers and the risk of infection decreases within six to 12 months. However, patients in whom chronic graft-versus-host disease (GVHD) develops have persisting B and T cell abnormalities, and in vivo and in vitro studies show impaired immunoglobulin regulation and function despite normal levels of serum immunoglobulin G. This review summarizes 12 published clinical trials of immunoglobulin therapy to correct immunodeficiency and prevent infection after marrow grafting. In five controlled studies, cytomegalovirus infection developed in a total of 52 of 172 (30 percent) immunoglobulin recipients and 71 of 165 (43 percent) control patients not given globulin. In four controlled trials, interstitial pneumonia developed in a total of 21 of 127 (17 percent) immunoglobulin recipients and 40 of 94 (43 percent) control patients. Three randomized trials reported a reduced rate of GVHD or post-engraftment septicemia in immunoglobulin recipients. However, methods of immunoglobulin preparation, antibody titer, and dose and schedule of prophylaxis varied widely in these studies, as did other critical patient, transplant regimen, and supportive care factors. Accordingly, data should be interpreted with caution. Ongoing controlled clinical trials will further define the proper role of immunoglobulin therapy in bone marrow transplantation.