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Introduction In the present study, we have reviewed the outcomes of patients with supracricoid partial laryngectomy (SCPL) in our institution. Our results show that SCPL is a well-tolerated procedure with generally good functional outcomes for patients with advanced laryngeal cancer. Objective We analyzed the oncological and functional results of a cohort of 35 patients who had undergone SCPL, and we highlighted the complications, identified the overall and disease-free survivals, demonstrating that the reconstructive laryngectomy guarantees the oncological safety and reproducibility of the oncological results, preserving the laryngeal functions and promoting an improvement in the patient's quality of life, favoring communication and interpersonal relationships. Methods Between 2010 and 2018, 35 patients underwent SCPL for primary and recurrent laryngeal squamous cell carcinomas, and they were divided into two subgroups: in 16 cases, the cricohyoidoepiglottopexy according to the Mayer-Piquet technique was performed, while the remaining 19 cases were submitted to the cricohyoidopexy according to the Labayle technique. In addition to evaluating the oncological results of patients undergoing reconstructive laryngectomy, the present study also aimed to evaluate the functionality of the residual larynx and the quality of life. Results The overall and disease-free survivals were of 83% and 76.3% respectively. All patients were able to swallow. The nasogastric tube was removed after a mean period of 21.8 days (range: 14 to 28 days). The mean decannulation time was of 23.4 days after surgery (range: 15 to 36 days). Conclusion The curves for the overall and disease-free survivals show that SCPL can guarantee oncological safety comparable to that of total laryngectomies in diseases in the intermediate stage and in carefully-selected advanced stages.

This current report describes a rare clinical case of neuroendocrine carcinoma (NEC) of the larynx with associated Lambert-Eaton myasthenic paraneoplastic syndrome (LEMS). A 68-year-old male patient presented with severe dysphonia and dysphagia. He underwent a total laryngectomy and the excised lesion was extremely large. A pathological examination demonstrated ‘morphological findings of a poorly differentiated carcinoma (G3) with aspects of neuroendocrine differentiation’ (i.e. a poorly differentiated neuroendocrine carcinomas [PD-NEC]). Based on the patient’s medical history and the immunohistochemical findings, he was treated with three cycles of neoadjuvant chemotherapy (cisplatin–etoposide) and then radiotherapy with a total dose of 70 Gy. Of the 10 cases of paraneoplastic syndrome (PNS) related to laryngeal NEC reported in the literature, nine of these syndromes were of an endocrine type. Only one case of PNS associated with laryngeal cancer had a neurological manifestation, which was LEMS. To the best of our knowledge, this current case has only one similar precedent in the literature and it is the second report of an association between a PD-NEC and LEMS. Laryngeal NECs are rare lesions with different prognostic characteristics. The diagnosis should be made using an endocrinological, neurological, radiological and histological multidisciplinary approach. A radical surgical approach is recommended.

Introduction: Improvement in social functioning is an important goal for advanced heart failure (HF) patients (pts) who receive left ventricular assist devices (LVADs). Self-reported social functioning and its association with clinical change is understudied. Methods: Adult HF pts who received LVADs at nine U.S. sites completed two measures of social functioning prior to, and 3-6 months after, surgery. Patient-Reported Outcomes Measurement Information System (PROMIS) measures were: Ability to Participate in Social Roles and Activities (Ability) and Satisfaction with Social Roles and Activities (Satisfaction). PROMIS uses T-scores standardized to a U.S. general population (mean=50; standard deviation, SD=10); higher scores represent better outcomes. New York Heart Association (NYHA) Functional Classification was assigned at both times by treating clinicians; change was subsequently categorized as Better, Same or Worse NYHA. Linear mixed effects models and least-squares means were estimated for Ability and Satisfaction. Results: Pts ( n =107) were primarily male (78%) and non-Hispanic White (68%); mean age (SD)=54 (12.5) years; 74% were NYHA Class IV prior to surgery and only 18% were NYHA IV at follow-up. NYHA was better for the majority ( n =75, 70%); 24% ( n =26) were the same, and 6% ( n =6) were worse. Mean Ability and Satisfaction were lower than the general population mean of 50 at both time points (Figure). Ability improved for the NYHA Better ( p p =0.030) groups, and nominally decreased for the Worse group ( p =0.800). Satisfaction improved for the Better ( p p >0.300). Conclusions: Self-reported social functioning measures were responsive to clinician-rated clinical change. Understanding these relationships may guide clinicians in providing targeted health-related quality of life therapies to improve social functioning.

Neuroendocrine tumors are a spectrum of rare and highly heterogeneous neoplasms with distinct functional and biological behavior in relation to location, tumor size, and histological differentiation. Neuroendocrine tumors arise from the neuroendocrine cells of the diffuse neuroendocrine system located in almost every organ. Neuroendocrine tumors in the head and neck district are usually reported in sinonasal cavities and larynx. We present the case of a nasopharyngeal small-cell neuroendocrine carcinoma, which, as far as we know, is the 16th case reported in literature.

Purpose To evaluate the validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) generic measures of social and physical function in patients with a left ventricular assist device (LVAD). Methods Adult heart failure (HF) patients at 12 U.S. sites in 2016-2020 enrolled in The Mechanical Circulatory Support: Measures of Adjustment and Quality Of Life Study (n=361). Post-LVAD implant, they completed PROMIS Ability to Participate in Social Roles and Activities, Satisfaction with Social Roles and Activities, and Physical Function; and Kansas City Cardiomyopathy Questionnaire (KCCQ-12) Social and Physical Limitation measures. PROMIS is standardized to a general population (mean=50; SD=10). KCCQ-12 range is 0-100. Higher scores represent better outcomes. Construct validity was evaluated by Pearson correlations between PROMIS and KCCQ-12 scores. Known-groups validity was evaluated by analysis of variance to distinguish PROMIS means across NYHA and self-reported financial difficulties. Results Mean age was 58 years; 80% were male, 70% were Non-Hispanic White, 79% had financial difficulties due to condition/treatment, and 61% were NYHA I-II. Similar numbers enrolled at 3, 6, 12-26, and > 26 months post-implant. Mean scores for PROMIS and KCCQ-12 measures decreased (worsened) as NYHA worsened (p Conclusion PROMIS measures of social and physical function were associated with well-accepted measures commonly assessed in HF and post-LVAD. Unlike condition-specific measures, PROMIS scores can be compared to the general population or other clinical conditions, thus providing a useful way to interpret social and physical function after LVAD implant.

To evaluate the reliability, validity, and responsiveness of the Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Computer Adaptive Test (UE-CAT) and the 8-item Physical Function short form (PF-SF8a) for monitoring outcomes after musculoskeletal injuries in upper extremity trauma patients.Prospective cohort study.Two Level-I trauma centers.Eligible consecutive patients were approached and 424 consented at time 1 (median 9.7 weeks posttreatment). After 6 months, 132 patients (43% of the 307 eligible) completed follow-up measures.Cross-sectional and longitudinal monitoring of upper extremity trauma patients treated with or without surgery.Reliability, validity, and responsiveness of the UE-CAT and PF-SF8a. Internal consistency reliability, convergent validity correlations, and discriminant validity (by fracture severity and dominant/nondominant extremity groups) were calculated for PROMIS and non-PROMIS forms. Floor and ceiling effects were also examined at both assessment occasions. Responsiveness was evaluated using random-intercept mixed effects models and effect sizes.PROMIS measures had excellent reliability, correlated well with legacy measures, and were responsive to treatment.PROMIS measures had good statistical properties. In addition to the known advantages of PROMIS, such as lower patient burden and the ability to assess the broadest range of functioning, our data demonstrated that for patients with upper extremity limitations, a region-specific measure such as the UE-CAT may perform more favorably than an overall/full body physical function measure.

Objectives Patient satisfaction with having a left ventricular assist device (LVAD) as a bridge to transplantation (BTT) or destination therapy (DT) may change over time early after surgery, as patients adjust to life on a device. We examined satisfaction at 2 time points early after surgery. Methods We evaluated patient self-report data at 3 and 6 months (mos) post implant at 12 U.S. sites (2016-2020). Measures included Satisfaction with Treatment (10 items, [FACIT-TS-G, modified]), VAD Team Communication (6 items, 0 [worst] - 18 [best] communication as wanted, [FACIT-TS-PS, modified]), and Being Bothered by VAD Self-care and Limitations (17 items, 1 [not] - 5 [very much] bothered, [new items]). Bowker's symmetry test was used to compare change in satisfaction for the 10 satisfaction items. Mixed effects models were estimated to assess change in VAD team communication and bother, assuming a missing at random mechanism. Results Patients (n=115) were primarily male (77%) and non-Hispanic White (65%); mean age(SD)=55 ( 12.5) years; 50% had an implant strategy of DT. Overall, no differences were detected regarding satisfaction with having a VAD between 3 and 6 mos after implant. 61% of patients (n=71) were satisfied (for the most part or completely) at 3 mos; of these, 63 (89%) responded similarly at 6 mos. Satisfaction with VAD team communication was high (least-squares means at 3 and 6 mos: 12.3 and 12.8) and being bothered by VAD self-care and limitations was low to moderate (least-squares means at 3 and 6 mos: 2.3 and 2.4), with no change over time (p>0.40). BTT and DT patients reported similar bother (p=0.21), but BTT patient satisfaction with communication was marginally higher than DT patients (p=0.05). Conclusions Patients were quite satisfied with having a VAD early after implant. Patients were also satisfied with communication from the VAD team and reported moderate or fewer hassles with having a VAD, which did not differ by implant strategy. Understanding satisfaction with a VAD may guide patient support early post implant.

Purpose Patients with an LVAD face unique burdens in LVAD self-care (device management) in addition to heart failure (HF) self-care (diet, exercise, medications). We evaluated the impact of health literacy and social support on self-efficacy regarding self-care, and evaluated change in self-efficacy. Methods Patients at 9 centers enrolled in the study within 30 days prior to LVAD implantation. Assessments were at baseline and 3 and 6 months post-LVAD. Self-efficacy regarding HF self-care (13 items) and Self-efficacy regarding VAD self-care (12 items) used a 4-point scale: 1=not sure at all, 4=very sure of performing self-care activities. Health Literacy Assessment Using Talking Touchscreen Technology (10 items) was dichotomized as inadequate/low vs. adequate/high. Social support (emotional, instrumental, informational) was measured with PROMIS v2.0 (T-score of 50=general population mean). Participants who died, were transplanted, or were withdrawn before 6 months were excluded from analysis. Linear mixed effects models were estimated using all available longitudinal data, assuming a missing at random mechanism. Results The sample (n=126) was primarily male (72%), non-Hispanic White (62%) and had high health literacy (67%); mean (SD) age was 55 (11.7) years. Excluded participants (n=68) were similar on most variables (p>0.05). Emotional, instrumental and informational social support were substantially higher than the general population (mean (SD): 58 (7.6), 61 (6.4), 59 (8.7)) and positively associated with HF self-care efficacy and LVAD self-care efficacy (parameter estimates: 0.01-0.02; p 0.05). Self-efficacy regarding HF self-care and VAD self-care were high and did not change over time (p>0.05): least-squares means (adjusted for social support and health literacy) at all assessments were 3.7 to 3.9. Conclusion Social support was high and positively associated with higher self-efficacy regarding HF and VAD self-care. Strong social support might mitigate the impact of other risk factors, including low health literacy, on self-efficacy. More research is needed to understand these factors in a more diverse patient group.

Amyloidosis is a group of idiopathic clinical syndromes caused by the deposition of insoluble fibrillar proteins (amyloid) in the extracellular matrix of organs and tissues. These deposits disrupt the function of the target organ. Amyloidosis can manifest as a systemic disease or a single-organ involvement (local form). Its etiology still remains unclear. Deposits of amyloid in the larynx are rare, accounting for between 0.2 and 1.2% of benign tumors of the larynx. In this retrospective study, we report the clinical aspects, diagnosis, treatment and follow-up of five female patients with localized laryngeal amyloidosis without systemic involvement. The patients were all treated successfully using microlaryngoscopy with CO2 laser or cold instruments. Prognosis is excellent; however, appropriate follow-up is an important part of the long-term management of this disease in order to prevent and control the possibility of local recurrence.

Objectives To evaluate the reliability, convergent validity, known-groups validity, and responsiveness of the Patient-Reported Outcomes Measurement Information System (PROMIS) Mobility Computer Adaptive Test (CAT) and PROMIS Physical Function 8a Short Form. Design Prospective cohort study. Setting Two Level-I trauma centers. Patients Eligible adults with an isolated lower extremity trauma injury receiving treatment were approached consecutively (n = 402 consented at time 1, median = 80 days after treatment). After 6 months, 122 (30.3%) completed another assessment. Intervention Cross-sectional and longitudinal monitoring of patients. Main outcome measurements Floor and ceiling effects, reliability (marginal reliability and Cronbach's alpha), convergent validity, known-groups discriminant validity (weight-bearing status and fracture severity), and responsiveness (Cohen's d effect size) were evaluated for the PROMIS Mobility CAT, PROMIS Physical Function 8a Short Form, and 5 other measures of physical function. Results PROMIS PFSF8a and Foot and Ankle Ability Measure Activities of Daily Living Index had ceiling effects. Both PROMIS measures demonstrated excellent internal consistency reliability (mean marginal reliability 0.94 and 0.96; Cronbach's alpha = 0.96). Convergent validity was supported by high correlations with other measures of physical function (r = 0.70-0.87). Known-groups validity by weight-bearing status and fracture severity was supported as was responsiveness (Mobility CAT effect size = 0.81; Physical Function Short Form 8a = 0.88). Conclusions The PROMIS Mobility CAT and Physical Function 8a Short Form demonstrated reliability, convergent and known-groups discriminant validity, and responsiveness in a sample of patients with a lower extremity orthopaedic trauma injury.

Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality.The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource.MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.

Background: Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality. Methods and Results: The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource. Conclusions: MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.

Purpose Patients (pts) with advanced heart failure (HF) describe debilitating HF-related symptoms. Those who undergo left ventricular assist device (LVAD) implantation report new surgical and device-related symptoms. We sought to quantify change in both HF and LVAD-related symptoms over time. Methods Using a longitudinal design, we evaluated data at baseline, 3, and 6 months (mos) post implant at 9 U.S. sites from 10/26/16 - 9/9/19. Measures assessed HF symptoms: fatigue (PROMIS, v1.0), dyspnea (10-item short form), swelling in extremities, abdominal bloating, poor appetite (single items), and LVAD-related symptoms: severity of pain at driveline exit site and chest incision, severity of discomfort wearing LVAD peripherals, and frequency of dizziness and fluid leaking around driveline exit site (single items). Linear mixed effects models were estimated using all available longitudinal data, assuming a missing at random mechanism. Results Pts (n=126) were primarily male (72%) and non-Hispanic White (62%), with mean age= 55±11.7 years. HF symptoms (i.e., fatigue, dyspnea, extremity swelling, abdominal bloating, and poor appetite) decreased from before to after implant (table). From 3-6 months after LVAD implant, severity of driveline exit site pain was none-mild and did not change; severity of chest incision pain was mild and decreased from 3 to 6 months; discomfort wearing peripherals was mild-moderate with no change, dizziness occurred rarely to occasionally and did not change, and fluid leaking at the driveline exit site occurred never to rarely and did not change (table). Conclusion Using novel measures, pts with advanced HF experienced considerable improvement of HF symptoms after LVAD implant. However, pts also reported mild/moderate discomfort wearing LVAD-related peripherals, which did not change over time. Other LVAD-related symptoms were less frequent or no more than mild in severity. These findings provide important information for pt decision making and should guide device design.

Introduction Social health (i.e., ability and satisfaction with ability to participate in family, work, and leisure activities) among patients (pts) with advanced heart failure (HF) who undergo left ventricular assist device (LVAD) implantation is incompletely described. This report evaluated social health across three time periods (early, mid, and later) after implantation. Methods We evaluated data from 183 pts with LVADs who were ≤6 months, >6-24 months, and >24 months post-implant at 9 U.S. sites (10/26/16 - 12/31/18). Measures of social health included overall social health and satisfaction with social function (PROMIS v1.1) and multi-item measures of social function and satisfaction with social function (PROMIS v2.0). Tests for differences between implant groups included χ2 tests and ANOVAs. Results Pts at all 3 time periods were, on average, middle-aged; the majority were male, white, and well educated. Etiology of HF and pre-implant strategy were similar among groups. The majority of pts at all 3 time periods reported good to excellent overall ability to carry out usual social activities and roles, and satisfaction with social activities and relationships. Approximately 20% to 30% of patients in all 3 groups reported fair or poor overall social function/ability, and fair or poor satisfaction with social activities and relationships. For all 3 groups, ability to participate in social roles and activities, and satisfaction with social roles and activities approximated the U.S. general population mean of 50. Conclusions Regardless of time since implant, the majority of LVAD pts were able to participate in social activities and were satisfied with their social health. For the subset of patients who reported lower social functioning and satisfaction, future work should focus on developing effective interventions. These findings highlight the importance of assessing social health after LVAD implantation.

Purpose Physical health among patients (pts) with advanced heart failure (HF) who undergo continuous flow left ventricular assist device (CF-LVAD) implantation is incompletely described, especially long-term. Research is needed to identify pts at risk. This report compared physical health early (≤ 6 months), mid (>6-24 months), and later (> 24 months) after CF-LVAD implantation. Methods Using a cross-sectional design, we evaluated data from 250 pts with CF-LVADs who were ≥ 3 months post implant at 9 U.S. sites from 10/26/16 - 06/28/18. Measures of physical health included overall physical health (PROMIS, v1.1), physical function (PROMIS, v1.2), sleep disturbance (PROMIS, v1.0), sleep-related impairment (PROMIS, v1.0), and satisfaction with sexual function (PROMIS, v2.0, modified). Analyses included χ2 tests and ANOVAs. Results The majority of pts were male, white, and well educated; age differed by time period post implant. Etiology of HF and pre implant strategy were similar among groups. The majority of pts in all 3 groups reported fair to good overall physical health, although significant differences were detected by group. For all 3 groups, sleep disturbance and sleep-related impairment scores approximated the U.S. general population mean of 50, while physical function scores were about one standard deviation lower. A majority of pts in all groups were not satisfied with sexual function, and most reported that LVAD equipment affected their satisfaction adversely. See table. Conclusion Regardless of time since implant, while the majority of pts reported overall physical health as fair or good, self-reported physical function was lower than the U.S. population and LVAD equipment interfered with satisfaction with sexual function. These findings highlight the importance of assessing multiple indicators of physical health and may provide direction for physical health focused therapies after CF-LVAD implantation.

Background Generic and heart failure (HF)–specific health-related quality of life (HRQOL) instruments do not address unique burdens of mechanical circulatory support (MCS). This report describes (1) a conceptual model of adjustment to MCS and HRQOL, (2) the development of a new set of items to assess adjustment and HRQOL, and (3) establishes content validity of the new model and items. Methods We interviewed 15 expert clinicians, 16 patients with advanced HF, and 48 MCS patients. A grounded theory approach was used to systemically examine qualitative data. We developed a coding dictionary, with codes organized under concepts. A conceptual model of adjustment to MCS and HRQOL was developed. A set of relevant items was generated from the codes, concepts, and conceptual model. After items were refined, MCS patients participated in cognitive interviews to provide feedback on their relevance and acceptability. Results Patients described how having HF and MCS affected their daily lives. Three concepts regarding adjustment to MCS and its relationship to HRQOL emerged: (1) effect of disease and treatment (satisfaction with treatment, symptoms, and self-efficacy regarding self-care), (2) resources, and (3) implant strategy. From our codes, concepts, and model, we developed a set of 652 items that were categorized by concept. The item set was reduced from 652 items to 236 (36%), and 120 of these 236 items (51%) underwent cognitive debriefing. Our final set includes 239 items with evidence of content validity. Conclusions Our newly developed model on adjustment to MCS and HRQOL and items will undergo further testing in the future.

Background: Multiple sclerosis (MS) is a chronic, progressive, and disabling disease of the central nervous system with dramatic variations in the combination and severity of symptoms it can produce. The lack of reliable disease-specific health-related quality of life (HRQL) measures for use in clinical trials prompted the development of the Neurology Quality of Life (Neuro-QOL) instrument, which includes 13 scales that assess physical, emotional, cognitive, and social domains, for use in a variety of neurological illnesses. Objective: The objective of this research paper is to conduct an initial assessment of the reliability and validation of the Neuro-QOL short forms (SFs) in MS. Methods: We assessed reliability, concurrent validity, known groups validity, and responsiveness between cross-sectional and longitudinal data in 161 recruited MS patients. Results: Internal consistency was high for all measures (α = 0.81–0.95) and ICCs were within the acceptable range (0.76–0.91); concurrent and known groups validity were highest with the Global HRQL question. Longitudinal assessment was limited by the lack of disease progression in the group. Conclusions: The Neuro-QOL SFs demonstrate good internal consistency, test-re-test reliability, and concurrent and known groups validity in this MS population, supporting the validity of Neuro-QOL in adults with MS.

Purpose There is a lack of validated outcome measures that assess health-related quality of life (HRQOL) among patients with mechanical circulatory support (MCS). The purpose of this qualitative study was to obtain health care clinicians’ perspectives on factors that influence HRQOL, both positively and negatively, among advanced heart failure patients with MCS. Methods and Materials We conducted semi-structured qualitative interviews with 15 clinicians who provide care to MCS patients (including 3 cardiac surgeons, 3 cardiologists, 2 palliative care physicians, 3 ventricular assist device coordinators, 2 social workers, and 2 psychologists). Interviews lasted 30-60 minutes, were audio-recorded, and transcribed verbatim. Data were analyzed using a 2-phase strategy of descriptive and thematic coding. Results Clinicians described a wide range of issues that impact on HRQOL of patients with MCS. Clinicians identified positive outcomes: improved physical function, decreased symptom burden, and increased life expectancy, often described as “the gift of time.” Importantly, clinicians identified negative outcomes related to the emotional impact of MCS: loss of independence and autonomy, uncertainty about the future, and concerns about being a burden to loved ones. Disturbed role performance and anxiety about device management were identified as problems in the early post-implant phase but tended to resolve over time. Finally, clinicians indicated that a small subset of patients, typically those with device-related complications, expressed regret over their decision to receive a device. Conclusions HRQOL among patients with MCS is a multi-dimensional construct that includes symptom burden, physical function and role performance, and emotional and relational impact. Clinicians indicated that MCS can have both a positive and negative impact on HRQOL. These findings indicate the necessity of developing a measure of HRQOL for patients with MCS. This will be done by triangulating clinician interviews with patient and caregiver interviews.

Background: Prostate cancer (PCa) is a leading cause of cancer death in the United States, and certain racial/ethnic groups, such as African American men, are disproportionately affected. Treatment for clinically localized PCa can cause physical and functional problems like bowel, urinary and sexual dysfunction, as well as emotional symptoms such as anxiety, uncertainty and fear. Although not entirely avoidable, many of these negative aftereffects may be prevented or lessened through patient initiated behaviors. Symptom monitoring and self management (SMSM) support programs may increase access and utilization of needed supportive care and help men gain a greater sense of personal efficacy to address some of the associated difficulties of PCa. Objective: To present patient focus group and expert survey findings that are the basis of a novel information technology-based application to increase access and utilization of self-care and symptom management in clinically localized PCa. Study Design: We are currently developing culturally tailored multimedia-assisted self management interventions for bowel, urinary, sexual and anxiety domains based on a literature review, expert survey and patient focus groups. We are also using patient reported outcome measures of bowel, urinary and sexual function and anxiety for weekly symptom monitoring activity. Following this first study phase, we will beta test this system with a diverse sample of community end-users and pilot the new system in medical and community clinics with men representing primary PCa treatment approaches for localized disease (n=100). Over a 4 week period, participants will receive a weekly email with a link to complete brief self report questions on treatment side effects and disease symptoms. When a patient's scores surpass a designated severity cut-point in a given area, a multimedia-assisted self management intervention will be triggered. Participants will be able to read, listen to or watch interventions in real time or download them for later use. Cancer Disparities Relevance: The proposed work can benefit men diagnosed with PCa gain increased access to utilization of important supportive care services though leveraging an innovative, culturally tailored information technology application. This study will offer new information on the feasibility, acceptance, and preliminary effectiveness of a patient-centered, internet-based system to provide real-time SMSM support during and following treatment. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):B96.