Leveraging web-based prediction calculators to set patient expectations for elective spine surgery: a qualitative study to inform implementation.

BACKGROUND: Prediction calculators can help set outcomes expectations following orthopaedic surgery, however effective implementation strategies for these tools are unknown. This study evaluated provider and patient perspectives on clinical implementation of web-based prediction calculators developed using national prospective spine surgery registry data from the Quality Outcomes Database. METHODS: We conducted semi-structured interviews in two health systems, Vanderbilt University Medical Center (VUMC) and Duke University Health System (DUHS) of orthopedic and neurosurgery health care providers (VUMC: n = 19; DUHS: n = 6), health care administrators (VUMC: n = 9; DUHS: n = 9), and patients undergoing elective spine surgery (VUMC: n = 16). Qualitative template analysis was used to analyze interview data, with a focus on end-user perspectives regarding clinical implementation of web-based prediction tools. RESULTS: Health care providers, administrators and patients overwhelmingly supported the use of the calculators to help set realistic expectations for surgical outcomes. Some clinicians had questions about the validity and applicability of the calculators in their patient population. A consensus was that the calculators needed seamless integration into clinical workflows, but there was little agreement on best methods for selecting which patients to complete the calculators, timing, and mode of completion. Many interviewees expressed concerns that calculator results could influence payers, or expose risk of liability. Few patients expressed concerns over additional survey burden if they understood that the information would directly inform their care. CONCLUSIONS: Interviewees had a largely positive opinion of the calculators, believing they could aid in discussions about expectations for pain and functional recovery after spine surgery. No single implementation strategy is likely to be successful, and strategies vary, even within the same healthcare system. Patients should be well-informed of how responses will be used to deliver better care, and concerns over how the calculators could impact payment and liability should be addressed prior to use. Future research is necessary to determine whether use of calculators improves management and outcomes for people seeking a surgical consult for spine pain.

Association of Inventory to Measure and Assess imaGe Disturbance - Head and Neck Scores With Clinically Meaningful Body Image-Related Distress Among Head and Neck Cancer Survivors.

Objective: The Inventory to Measure and Assess imaGe disturbance - Head and Neck (IMAGE-HN) is a validated patient-reported outcome measure of head and neck cancer-related body image-related distress (BID). However, the IMAGE-HN score corresponding to clinically relevant BID is unknown. The study objective is to determine the IMAGE-HN cutoff score that identifies head and neck cancer patients with clinically relevant BID. Methods: We conducted a cross-sectional study at six academic medical centers. Individuals ≥18 years old with a history of head and neck cancer treated with definitive intent were included. The primary outcome measure was the IMAGE-HN. A Receiver Operating Characteristic curve analysis was performed to identify the IMAGE-HN score that maximized sensitivity and specificity relative to a Body Image Scale score of ≥10 (which indicates clinically relevant BID in a general oncology population). To confirm the validity of the IMAGE-HN cutoff score, we compared the severity of depressive [Patient Health Questionnaire-9 (PHQ-9)] and anxiety symptoms [Generalized Anxiety Disorder-7 (GAD-7)], and quality of life [University of Washington-QOL (UW-QOL)] in patients with IMAGE-HN scores above and below the cutoff. Results: Of the 250 patients, 70.4% were male and the mean age was 62.3 years. An IMAGE-HN score of ≥22 was the optimal cutoff score relative to a Body Image Scale score of ≥10 and represents a clinically relevant level of head and neck cancer-related BID. Relative to those with an IMAGE-HN score of <22, patients with IMAGE-HN scores of ≥22 had a clinically meaningful increase in symptoms of depression (mean PHQ-9 score difference = 5.8) and anxiety (mean GAD-7 score difference = 4.1) as well as worse physical (mean UW-QOL score difference = 18.9) and social-emotional QOL (mean UW-QOL score difference = 21.5). Using an IMAGE-HN cutoff score ≥22, 28% of patients had clinically relevant BID. Conclusion: An IMAGE-HN score of ≥22 identifies patients with clinically relevant head and neck cancer-related BID. This score may be used to detect patients who could benefit from strategies to manage their distress, select patients for studies evaluating interventions to manage head and neck cancer-related BID, and improve our understanding of the underlying epidemiology of the disorder.

Factors Associated With Risk of Body Image-Related Distress in Patients With Head and Neck Cancer.

Importance: Body image-related distress (BID) is common among head and neck cancer (HNC) survivors and associated with significant morbidity. Risk factors for HNC-related BID remain poorly characterized because prior research has used outcome measures that fail to fully capture BID as experienced by HNC survivors. Objective: To assess the association of demographic and oncologic characteristics with HNC-related BID using the Inventory to Measure and Assess imaGe disturbancE-Head & Neck (IMAGE-HN), a validated, multidomain, patient-reported outcome measure of HNC-related BID. Design, Setting, and Participants: This cross-sectional study assessed 301 adult survivors of surgically managed HNC at 4 academic medical centers. Main Outcomes and Measures: The primary outcome measure was IMAGE-HN scores, for which higher scores reflect more severe HNC-related BID. Multivariable linear regression analyses were performed to evaluate the association of patient characteristics with IMAGE-HN global and 4 subdomain (other-oriented appearance concerns, personal dissatisfaction with appearance, distress with functional impairments, and social avoidance) scores. Results: Of the 301 participants (212 [70.4%] male; mean [SD] age, 65.3 [11.7] years), 181 (60.1%) underwent free flap reconstruction. Graduation from college (ß = -9.6; 95% CI, -17.5 to -1.7) or graduate school (ß = -12.6; 95% CI, -21.2 to -3.8) was associated with lower IMAGE-HN social avoidance scores compared with less than a high school education. Compared with paid work, unemployment was associated with higher IMAGE-HN other-oriented appearance (ß = 10.7; 95% CI, 2.0-19.3), personal dissatisfaction with appearance (ß = 12.5; 95% CI, 1.2-23.7), and global (ß = 8.0; 95% CI, 0.6-15.4) scores. Compared with no reconstruction, free flap reconstruction was associated with higher IMAGE-HN global scores (ß = 11.5; 95% CI, 7.9-15.0) and all subdomain scores (other-oriented appearance: ß = 13.1; 95% CI, 8.6-17.6; personal dissatisfaction with appearance: ß = 15.4; 95% CI, 10.0-20.7; distress with functional impairment: ß = 12.8; 95% CI, 8.1-17.4; and social avoidance and isolation: ß = 10.2; 95% CI, 5.8-14.6). Higher IMAGE-HN distress with functional impairment scores were found in those who received surgery and adjuvant radiation (ß = 7.8; 95% CI, 2.9-12.7) or chemoradiotherapy (ß = 6.5; 95% CI, 1.8-11.3) compared with surgery alone. The multivariable regression model accounted for a modest proportion of variance in IMAGE-HN global (R2 = 0.18) and subdomain scores (R2 = 0.20 for other-oriented appearance, 0.14 for personal dissatisfaction with appearance, 0.21 for distress with functional impairment, and 0.13 for social avoidance and isolation). Conclusions and Relevance: In this cross-sectional study, factors associated with risk of HNC-related BID included free flap reconstruction, lower educational attainment, unemployment, and multiple treatment modalities. These characteristics explain a modest proportion of variance in IMAGE-HN scores, suggesting that other characteristics may be the major risk factors for HNC-related BID and should be explored in future studies.

A qualitative examination of patient priorities and preferences during treatment decision-making for recurrent head and neck cancer.

PURPOSE: Patients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC. METHODS: Individuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data. RESULTS: Participants (n = 38) considered information from healthcare providers, likelihood of treatment success, and other patient-specific factors in making their treatment decisions. CONCLUSIONS: Although patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.

A Comparison of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and Pain Assessment in Advanced Dementia Scale (PAINAD).

BACKGROUND: There is currently no gold standard instrument for assessing pain in severely cognitively impaired adults who are unable to provide self-report. AIMS: To determine interrater reliability of the PACSLAC and PAINAD in assessing pain behaviors in patients with the same pain stimulus, determine the consistency of the reliable changes between and within the instruments and assess nurse preference for either instrument. DESIGN: A single-group, within-subjects repeated-measures design was implemented. SETTING: The study took place in a small suburban hospital. PARTICIPANTS/SUBJECTS: Pain levels were observed at 24, 48, and 72 hours postsurgery using two instruments: Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and Pain Assessment in Advanced Dementia Scale (PAINAD). These instruments were selected because they are among the most commonly recommended tools for clinical use. Interrater reliability was analyzed along with reliable changes in pain for each period, and the study concluded with the nurse raters completing a preference survey. METHODS: A convenience sample of 30 patients was used with a diagnosis of severe dementia rendering the patient unable to reliably express pain, 60+ years of age, recovering from hip fracture surgery. RESULTS: Greater interrater reliability was found for the PACSLAC, with reliable change potentially affected by the type and level of pain medication. The nurses' preference for the tool was split. CONCLUSIONS: The results of this study indicate that the PACSLAC may be the more reliable tool over the PAINAD; however, rater training and familiarity with the tool is critical.

Priorities and Preferences of Patients With Head and Neck Cancer for Discussing and Receiving Information About Sexuality and Perception of Self-Report Measures.

BACKGROUND: Head and neck cancer and its treatment can cause impairment in survivors' sexuality. Previous studies show a need for education and psychological support. AIM: To examine patients' priorities and preferences for discussing and receiving information about sexuality and to examine patient perceptions of existing self-report measures used in research. METHODS: This descriptive, cross-sectional, Web-based study recruited adults with a current or previous diagnosis of head and neck cancer. Participants answered questions about their priority and preference for receiving information about sexuality and reviewed 4 self-report measures commonly used in the research of this population. RESULTS: More than 80% (n = 61) of participants reported that it was important to receive information about sexual issues. Participants chose "at the time of diagnosis" as the most frequent answer for preferred time to receive this information. Half of the participants (n = 35) indicated that they prefer discussing sexual issues with a health-care provider. The most frequent answer for the method of receiving information was through discussions. Participants endorsed 4 themes not addressed by self-report surveys: (i) elicitation of important information, (ii) symptom burden issues, (iii) psychological issues, and (iv) physical barriers. CLINICAL IMPLICATIONS: Providers, regardless of specialty, must attempt or facilitate discussions around these issues at various times within the treatment and recovery phases. STRENGTHS & LIMITATIONS: Although limited by sample representation and cross-sectional design, this study addresses an important patient-centered issue that is a critical aspect of quality of life. CONCLUSIONS: Patients prefer to discuss sexual issues in person with their health-care providers at the time of diagnosis. Participants reacted positively to the self-report measures, but they felt that important issues faced by patients with head and neck cancer were not fully addressed. Rhoten BA, Davis AJ, Baraff BN, et al. Priorities and Preferences of Patients With Head and Neck Cancer for Discussing and Receiving Information About Sexuality and Perception of Self-Report Measures. J Sex Med 2020;17:1529-1537.

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 Cronbach's 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.

Evaluation of CT Changes in the Head and Neck After Cancer Treatment: Development of a Measurement Tool.

BACKGROUND: The late effect continuum of lymphedema and fibrosis (LEF) affects more than 70% of patients after treatment for head and neck cancer (HNC). LEF is associated with symptom burden and decreased function and quality of life. Although surveillance imaging is common posttreatment, objective assessment of soft tissues is not, likely due to the lack of objective evaluation methods and understanding of the significance of LEF. We undertook the development of a tool to measure LEF using CT scans in HNC patients. METHODS AND RESULTS: We developed a CT measurement tool assessing sites of soft tissue damage secondary to tumor, surgery, or radiation. The tool was applied to pre- and posttreatment CT scans for 10 HNC patients. The data were reviewed, and the initial tool was modified. Ten additional patients' scans were assessed using the revised tool. The tool was modified further after data review by an expert panel and was then applied to scans from all 20 patients. The final tool included 11 items as follows: grading of fat stranding at 6 sites (axial reconstruction images, scale 0-2), measurement of epiglottic thickness (sagittal images, scale mm), and measurement of prevertebral soft tissue thickness at C3 (sagittal images, scale mm). A total of 176 CT scans were evaluated from 20 patients (range 4-14 examinations/patient). Preliminary data demonstrated face validity. CONCLUSIONS: The final LEF assessment tool (CT-LEFAT) provides a standardized method for assessing critical sites that are involved by LEF. Studies to assess reliability and validity are ongoing.

Conceptual Issues Surrounding Body Image for Oncology Nurses.

Cancer and its treatment can uniquely influence survivors' body image. Oncology nurses should understand how this quality-of-life issue can affect patients. To better understand the body image experiences of patients with cancer, this article will present a historic overview of body image conceptualization, as well as a more contemporary, cancer-specific approach to understanding how this population of patients may be particularly affected.

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

PURPOSE: To 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. METHODS: Twenty-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. RESULTS: Themes 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. CONCLUSIONS: Lack 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 Avant's 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.

Body image and depressive symptoms in patients with head and neck cancer: an important relationship.

PURPOSE: The purpose of this study is to examine the relationship between body image and depressive symptoms in patients who have been treated for head and neck cancer. METHODS: This is a prospective, longitudinal analysis. Body image and depressive symptoms were measured in patients diagnosed with head and neck cancer at baseline, end of treatment, 6 weeks post-treatment, and 12 weeks post-treatment. Body image was measured using the Body Image Quality of Life Inventory, and depressive symptoms were measured using the Center for Epidemiological Studies Depression Scale. RESULTS: Forty-three individuals diagnosed with head and neck cancer participated in this study. The majority of participants were male, Caucasian, and married or living with a partner. Participants ranged from age 32 to 78 years (M = 57.8 years, SD = 10.5 years). At 12 weeks post-treatment, body image scores were statistically significantly higher than they were at the end of treatment (p = 0.016) and 6 weeks post-treatment (p = 0.032). Statistically significant increases in levels of depressive symptoms were observed at the end of treatment (p < 0.001) and 6 weeks post-treatment (p = 0.036) with a return to baseline by the 12-week post-treatment assessment (p = 0.115). Body image and depressive symptoms were statistically significantly associated at the end of treatment, 6 weeks post-treatment, and 12 weeks post-treatment (r s -0.32 to -0.56, p < 0.05). CONCLUSIONS: This study supports early assessment of body image in patients with head and neck cancer. Additionally, the association between poorer body image and increased depressive symptoms is key in understanding the symptom clusters that patients with head and neck cancer experience.

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.