Bethany A. Rhoten

Body image in patients with head and neck cancer: A review of the literature

OBJECTIVES Patients with head and neck cancer have a high potential for body image disturbance due to highly visible disfigurement resulting from both the primary cancer and its treatment. The purpose of this review is to examine the conceptual framework for understanding body image in patients treated for head and neck cancer, present the current state of the science, discuss measurement issues, and identify areas for future investigation. A novel hypothetical model based on ongoing work is proposed, and it asserts that head and neck cancer therapy results in two main tumor/treatment related physical effects: (1) disfigurement and (2) dysfunction. In this model, personal, social and environmental factors moderate the effect of dysfunction and disfigurement on body image. RESULTS A search of the empirical literature revealed a paucity of data on body image in head and neck cancers including a lack of longitudinal data as well as a lack of data on the relationship between body image disturbance and other psychosocial variables such as depression, anxiety, and social isolation over the course of treatment and throughout recovery. Additionally, the need for measurement tools specifically developed for the assessment of body image in head and neck cancer patients was identified. CONCLUSION Prospective longitudinal studies that define the trajectory of body image issues and the mediating and moderating factors associated with body image will allow researchers to design targeted interventions to limit body image disturbance and thereby improve quality of life in patients with head and neck cancer.

Bioelectrical Impedance Self-Measurement Protocol Development and Daily Variation Between Healthy Volunteers and Breast Cancer Survivors with Lymphedema

BACKGROUND A significant percentage of breast cancer survivors are at risk for lymphedema for which lifelong self-care is required. Previous studies suggest that less than 50% of breast cancer survivors with lymphedema (BCS-LE) perform prescribed self-care tasks and that even wearing a compression sleeve, the most commonly reported self-care activity, is done irregularly. Reasons for poor self-care adherence include perceived lack of results from self-care (no available arm volume data) and perceived inability to manage the condition. METHODS AND RESULTS A two-part pilot study was conducted to: 1) develop and determine the feasibility of a self-measurement protocol using a single frequency bioelectrical impedance device; and 2) examine daily variation in extracellular volume in healthy and lymphedematous limbs. Healthy and BCS-LE volunteers were recruited to refine and test a self-measurement protocol. Volunteers were trained in the use of the device and measured for 5 consecutive days in a laboratory setting. They were then given the device to use at home for an additional 5 consecutive days of self-measurement. All volunteers completed each scheduled home measurement. Daily variability in both groups was noted. CONCLUSIONS Home self-measurement using bioelectrical impedance is feasible, acceptable, and captures change. This has implications for both self-care support and for the possibility of incorporating self-measurement using bioelectrical impedance in future clinical trials examining effectiveness of lymphedema treatment.

Breast cancer survivors’ perspectives of critical lymphedema self-care support needs

PurposeTo solicit breast cancer survivors’ perspectives on the variety of issues they face related to lymphedema self-care and identify support needs perceived as critical for managing their chronic medical condition.MethodsTwenty-one breast cancer survivors with lymphedema participated in audio-recorded focus groups about barriers and facilitators of self-care. Transcripts were analyzed using ATLAS.ti software by two coders. Triangulation of findings provided for refinement and category confirmation.ResultsThemes identified included lack of social support, lack of resources for self-care activities, and self-advocacy by default. Lack of social support subthemes were feeling misunderstood, minimization of needs, and feeling criticized. Lack of resources for self-care activities subthemes were lack of both tangible self-care support and self-care supplies. Self-advocacy by default subthemes were the need to proactively manage lymphedema complications, the need to educate health-care workers, and feeling marginalized by the health-care system.ConclusionsLack of support and the failure of others to recognize lymphedema as a chronic condition set this patient population apart from other patients with chronic diseases and decreases the amount of help needed to manage the condition.

Body image disturbance in adults treated for cancer – a concept analysis

AIM To report an analysis of the concept of body image disturbance in adults who have been treated for cancer as a phenomenon of interest to nurses. BACKGROUND Although the concept of body image disturbance has been clearly defined in adolescents and adults with eating disorders, adults who have been treated for cancer may also experience body image disturbance. In this context, the concept of body image disturbance has not been clearly defined. DESIGN Concept analysis. DATA SOURCES PubMed, Psychological Information Database and Cumulative Index of Nursing and Allied Health Literature were searched for publications from 1937 - 2015. Search terms included body image, cancer, body image disturbance, adult and concept analysis. METHODS Walker and Avants 8-step method of concept analysis was used. RESULTS The defining attributes of body image disturbance in adults who have been treated for cancer are: (1) self-perception of a change in appearance and displeasure with the change or perceived change in appearance; (2) decline in an area of function; and (3) psychological distress regarding changes in appearance and/or function. CONCLUSIONS This concept analysis provides a foundation for the development of multidimensional assessment tools and interventions to alleviate body image disturbance in this population. A better understanding of body image disturbance in adults treated for cancer will assist nurses and other clinicians in identifying this phenomenon and nurse scientists in developing instruments that accurately measure this condition, along with interventions that will promote a better quality of life for survivors.

A Pilot Randomized Trial Evaluating Lymphedema Self-Measurement with Bioelectrical Impedance, Self-Care Adherence, and Health Outcomes

BACKGROUND Less than half of breast cancer survivors with lymphedema perform self-care as directed. Effective lymphedema self-care is required to obtain acceptable health outcomes. Self-Regulation Theory suggests that objective self-measurement of physiological conditions is necessary to promote self-regulation/self-care. Bioelectric Impedance Spectroscopy (BIS) represents a potential self-measurement method for arm lymphedema. The purpose of this pilot study was to examine the impact of arm self-measurement on daily self-care activities and health outcomes in breast cancer survivors with lymphedema. METHODS AND RESULTS A pilot randomized clinical trial compared outcomes between breast cancer survivors with lymphedema who self-monitored for 3 months and breast cancer survivors with lymphedema who did not self-monitor. Data were collected at baseline, months 1, 2, 3, and 4. Eighty-six women with lymphedema were screened: 62 were eligible, 50 were enrolled, 10 withdrew, and 1 had incomplete data, thus N=39. No between group differences were noted in participant characteristics. The self-monitored group had higher days of garment use (p=0.005) that remained stable after self-monitoring stopped. The median number of days of simple manual lymphatic drainage increased in the intervention group (p=0.004) with a downward trend after self-monitoring ceased. CONCLUSIONS Objective self-monitoring of arms using BIS is possible. Self-monitoring may positively impact self-care behaviors. Highly symptomatic patients may require coaching or other psychological support to improve their self-care. Studies that combine a cognitive behavioral therapy component along with self-measurement should be considered as potential interventions to impact lymphedema self-care. Other applications of self-monitoring warrant investigation.

Hide and Seek: Body Image-Related Issues for Breast Cancer Survivors with Lymphedema

Hide and Seek: Body Image-Related Issues for Breast Cancer Survivors with Lymphedema Although previous studies of breast cancer survivors with lymphedema have examined body image, none have examined body image as a multidimensional experience within this population. The purpose of this paper is to present focus group findings related to body image in breast cancer survivors with lymphedema. Focus groups were conducted at Vanderbilt University School of Nursing and were audio recorded and transcribed verbatim. Transcripts were coded line-by-line using ATLAS.ti software by three independent reviewers. Initial coding was clustered into categories representing broader categories of similar codes.

Vanderbilt head and neck symptom survey, version 2.0: Clinical and research utility for identification of symptom clusters and changes in symptoms over time

OBJECTIVES The symptoms and functional defects following treatment for head and neck cancer (HNC) have been poorly defined. The purpose of this study was to examine the utility of the Vanderbilt Head and Neck Symptom Survey (VHNSS) version 2.0 to identify symptom clusters experienced by patients with HNC as well as assess reliability and sensitivity to change. MATERIALS AND METHODS The VHNSS 2.0 questionnaire was completed by 150 patients over three studies. Two studies utilized the survey at multiple time points. RESULTS Cluster analysis identified ten multi-item clusters and three single items. The internal consistency was good to excellent, with Cronbachs alpha coefficient above 0.90 in five symptom clusters and above 0.70 in remaining clusters. Clusters demonstrated convergent and divergent validity with other measures. Symptom burden was lowest at baseline, peaked at the end of treatment then subsided over the following months. CONCLUSIONS The VHNSS 2.0 is a reliable and valid measure of acute and late toxicities in patients treated for HNC. The tool may be used in research and clinical practice to screen, to evaluate treatments, and to compare side effects of treatment regimens.

Adherence and Quality of Life

Individuals with lymphedema navigate a particularly complex treatment and self-management regimen, making adherence difficult. It is essential that these individuals conduct lifelong self-care activities to control the progression of swelling, manage lymphedema-associated symptom burden, and minimize long-term negative outcomes (e.g., elephantiasis). Situational, physiological, and psychological factors have the potential to impact adherence to lymphedema management behaviors. It is important for healthcare providers to understand the factors that might influence adherence, as many studies of chronic conditions have shown that adherence improves health-related quality of life. Empirical evidence, however, is lacking for specific behaviors that improve the health-related quality of life of individuals with lymphedema. We postulate that adherence to lymphedema management behaviors decreases symptom burden (i.e., progressive increases in swelling, infection, etc.) and thus facilitates an increase in health-related quality of life. Given the importance of lymphedema self-care, healthcare professionals need to assess and address situational, physiological, and psychological factors that influence adherence.

Depressive symptoms, social anxiety, and perceived neck function in patients with head and neck cancer

This study examined the relationships of depressive symptoms and social anxiety with perceived neck function in patients treated for head and neck cancer.