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PURPOSE: To improve the care of survivors of head and neck cancer, we developed the Head and Neck Survivorship Tool: Assessment and Recommendations (HN-STAR). HN-STAR is an electronic platform that incorporates patient-reported outcomes into a clinical decision support tool for use at a survivorship visit. Selections in the clinical decision support tool automatically populate a survivorship care plan (SCP). We aimed to refine HN-STAR by eliciting and incorporating feedback on its ease of use and usefulness. METHODS: Human-computer interaction (HCI) experts reviewed HN-STAR using think-aloud testing and the Nielsen Heuristic Checklist. Nurse practitioners (NPs) thought aloud while reviewing the clinical decision support tool and SCP and responded to an interview. Survivors used HN-STAR as part of a routine visit and were interviewed afterward. We analyzed themes from the feedback. We described how we addressed each theme to improve the usability of HN-STAR. RESULTS: Five HCI experts, 10 NPs, and 10 cancer survivors provided complementary usability insight that we categorized into themes of improvements. For ease of use, themes included technical design considerations to enhance user interface, ease of completion of a self-assessment, streamlining text, disruption of the clinic visit, and threshold for symptoms to appear on the SCP. The theme addressing usefulness was efficiency and comprehensiveness of the clinic visit. For each theme, we report revisions to HN-STAR in response to the feedback. CONCLUSION: HCI experts provided key technical design insights into HN-STAR, whereas NPs and survivors provided usability feedback and clinical perspectives. We incorporated the feedback into the preparation for additional testing of HN-STAR. This method can inform and improve the ease of use and usefulness of the survivorship applications.
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Supervivientes de Cáncer/psicología , Neoplasias de Cabeza y Cuello/enfermería , Supervivencia , Interfaz Usuario-Computador , Sistemas de Apoyo a Decisiones Clínicas , Femenino , Neoplasias de Cabeza y Cuello/psicología , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Medición de Resultados Informados por el Paciente , Programas InformáticosRESUMEN
: The overall incidence of head and neck cancer-which includes laryngeal, hypopharyngeal, nasal cavity, paranasal sinus, nasopharyngeal, oral, oropharyngeal, and salivary gland cancers-has declined in the United States over the past 30 years with the concomitant reduction in tobacco use. Over that same period, however, the worldwide incidence of oropharyngeal cancer has escalated significantly, most notably among men and women under age 60 who live in developed countries. This epidemic rise in oropharyngeal cancer is largely attributed to certain genotypes of the human papillomavirus (HPV). In the United States, HPV prevalence in oropharyngeal tumors increased dramatically, from roughly 16% between 1984 and 1989 to nearly 73% between 2000 and 2004, and the annual incidence of HPV-positive oropharyngeal cancer is expected to surpass that of HPV-related cervical cancer by 2020.This article provides an overview of head and neck cancer-its incidence, risk factors, treatment, and posttreatment sequelae-with a focus on HPV-related oropharyngeal cancer. Unlike other forms of head and neck cancer, HPV-related oropharyngeal cancer tends to affect younger patients with few or none of the traditional risk factors and has a distinctive presentation, histology, and natural course. In order to provide appropriate patient education and to help these patients monitor and manage late and long-term treatment effects, it is important for nurses to be aware of this disease and its treatment, and of the unique survivorship issues that arise for affected patients.
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Carcinoma de Células Escamosas/epidemiología , Evaluación en Enfermería , Neoplasias Orofaríngeas/epidemiología , Infecciones por Papillomavirus/epidemiología , Carcinoma de Células Escamosas/enfermería , Carcinoma de Células Escamosas/terapia , Terapia Combinada , Humanos , Incidencia , Neoplasias Orofaríngeas/enfermería , Neoplasias Orofaríngeas/terapia , Papillomaviridae/aislamiento & purificación , Infecciones por Papillomavirus/complicaciones , Prevalencia , Factores de Riesgo , Estados Unidos/epidemiologíaRESUMEN
OBJECTIVE: To describe an institutional experience conducting an annual free head and neck (H&N) cancer screening clinic. Specific aims included: (1) identifying factors predicting which individuals will have findings suspicious for malignancy; and (2) evaluating potential barriers to subsequent follow-up among patients with suspicious findings. MATERIALS AND METHODS: This retrospective cohort study involved individuals presenting to an annual H&N cancer screening clinic (2001-2012). Original screening clinic data and electronic medical records were reviewed. Descriptive and comparative statistics were utilized in order to address the study aims. RESULTS: Of 1573 participants, 325 (21%) had abnormal findings on screening, of which 183 (12%) had findings suspicious for cancer. No demographic factors predicted a suspicion for cancer. The presence of patient-reported symptoms (16% vs. 8%; p<0.001) were significantly associated with a suspicion for cancer. Only 20% of individuals with a suspicion for cancer returned to our institution for recommended follow-up. Patients who did not complain of symptoms were less likely to return for follow-up (2% vs. 36%; p<0.001). Of the patients who returned for follow-up evaluation, malignancies were diagnosed in three patients. CONCLUSION: Few individuals presenting to a H&N cancer screening clinic will have a malignancy detected, and barriers may influence patients' likelihood to present for subsequent evaluation. Due to self-selection among patients presenting for screening, traditional risk factors may not be associated with the likelihood of detecting a suspicion for H&N cancer. Head and neck cancer screening clinics should thus target patients at high risk, and attempt to ensure appropriate follow-up thereafter.
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Instituciones de Atención Ambulatoria/organización & administración , Detección Precoz del Cáncer , Neoplasias de Cabeza y Cuello/diagnóstico , Tamizaje Masivo/organización & administración , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Neoplasias de Cabeza y Cuello/epidemiología , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de Salud , Estudios Retrospectivos , Factores de Riesgo , Adulto JovenRESUMEN
INTRODUCTION: Quality-of-life analysis is essential in determining the eventual outcome after treatment for head and neck cancer. This is particularly important when functional sequelae of treatment cause significant morbidity. The purpose of this study is to evaluate the functional status of a group of patients who had undergone primary surgical therapy for squamous cell carcinoma of the base of the tongue. METHODS: At our institution from 1979 to 1993, we identified 93 patients who had undergone resection of the base of the tongue as primary treatment for squamous cell carcinoma. Patients who required laryngectomy were excluded from this group. Forty-eight survivors were identified, and the questionnaires included the Performance Status Scale for Head and Neck Cancer Patients (PSS) and the Karnofsky Performance Status Scale (KPS). The data were reported numerically, with 0 representing the worst score and 100 representing the best score. RESULTS: Twenty-six patients completed the questionnaires. There were 19 men and 7 women. Their mean survival time was 8.6 years. Two patients had their primary tumors staged as T1, 17 patients had T2, and 7 patients had T3 disease. When evaluating the normalcy of diet, the mean score for the whole group was 73.1 (range, 20-100), the mean score for understandability of speech was 80.8 (range, 50-100), and the mean score for eating in public was 79.8 (range, 0-00). The mean KPS was 90 (range, 60-100). When comparing early (T1 and T2) with advanced (T3) disease, there were no significant differences in PSS and KPS. When comparing younger (<50 years) with older (>50 years) patients, there were no significant differences in PSS scores. Younger patients had a significantly higher KPS than older patients: mean, 97.5 vs 86.4 (p <.02). CONCLUSIONS: The long-term functional status for these patients who had undergone resection of a significant portion of the base of their tongue was good. The outcome did not seem to be related to either the stage of the lesion or the age of the patient. More studies are needed to examine the functional outcome of this patient population.