Development and feasibility of a Swallowing intervention Package (SiP) for patients receiving radiotherapy treatment for head and neck cancer-the SiP study protocol.

BACKGROUND: Head and neck cancer (HNC) is the sixth most common cancer worldwide, and the functional, psychological and social consequences of HNC cancer and its treatment can be severe and chronic. Dysphagia (swallowing problems) affects up to two thirds of patients undergoing combined chemoradiotherapy. Recent reviews suggest that prophylactic swallowing exercises may improve a range of short- and long-term outcomes; however, the importance of psychological and behavioural factors on adherence to swallowing exercises has not been adequately studied. This study aims to develop and test the feasibility of a Swallowing intervention Package (SiP) designed in partnership with patients, speech and language therapists (SLTs) and other members of the head and neck multi-disciplinary team (MDT), for patients undergoing chemoradiotherapy (CRT) or radiotherapy (RT) for head and neck cancer. METHODS/DESIGN: This feasibility study uses quantitative and qualitative research methods, within a quasi-experimental design, to assess whether patients will tolerate and adhere to the SiP intervention, which aspects of the intervention can be implemented and which cannot, whether treatment fidelity can be achieved across different contexts, whether study processes and outcome measures will be feasible and acceptable and to what extent the intervention is likely to have an impact on swallowing dysfunction and quality of life. Patients are being recruited from five sites in Scotland and England (three interventions and two usual care). The SLT based in the relevant intervention centre teaches the exercise programme and provides supporting materials. A combination of patient-reported outcome measures (PROMs), adherence measures and clinical swallowing assessments are used prior to intervention (baseline), at the end of treatment, 3 and 6 months post-treatment. DISCUSSION: This collaborative study has taken a unique approach to the development of a patient-centred and evidence-based swallowing intervention. The introduction of an e-SiP app provides an exploration of the use of technology in delivering this intervention. The study provides an opportunity to examine the feasibility of delivering and participating in a supported swallowing intervention across several different NHS sites and will provide the evidence needed to refine intervention and study processes for a future trial. TRIAL REGISTRATION: NCRI portfolio, 18192 & 20259.

Predictors of quality of life in head and neck cancer survivors up to 5 years after end of treatment: a cross-sectional survey.

PURPOSE: This study aimed to assess quality of life (QoL) in head and neck cancer (HNC) survivors and determine factors predictive of poor QoL in the first 5 years after the end of treatment. METHODS: A cross-sectional survey, including the Quality of Life in Adult Cancer Survivors (QLACS) measure, was sent to HNC survivors in three Scottish health regions, with responses linked to routinely collected clinical data. Independent sample t tests, ANOVAs, Pearson correlations and multiple hierarchical regressions were used to explore associations between and to determine the contribution made by demographic, lifestyle and clinical factors to predicting 'generic' and 'cancer-specific' quality of life. RESULTS: Two hundred eighty patients (65 %) returned questionnaires. After adjustment, multivariate analysis showed that younger age, lower socio-economic status, unemployment and self-reported comorbidity independently contributed to poorer generic and cancer-specific quality of life. In addition to these factors, having had a feeding tube or a diagnosis of oral cavity cancer were independently predictive of poorer cancer-specific quality of life. CONCLUSIONS: Socio-economic factors and comorbidity are important predictors of QoL in HNC survivors. These factors and the detrimental long-term effects of feeding tubes need further attention in research and practice.

Pediatric teledermatology consultations: relationship between provided data and diagnosis.

There is a shortage of pediatric dermatologists. Teledermatology has emerged as a tool to facilitate access to dermatologists. Many questions remain regarding how to optimize consultations in order to provide the best diagnosis and management recommendations. The aim of this retrospective cohort study was to categorize the historical data and judge the adequacy of photographs sent by referring providers to our academic pediatric teledermatology practice at the University of California, San Francisco, and to evaluate the relationship of these data to our ability to render a diagnosis. A diagnosis was rendered in 75% of cases. The only historical data associated with receiving a diagnosis was prior treatment (OR 2.01, CI 1.01, 4, p < 0.05). Appropriate image distance from the target was associated with receiving a diagnosis for rashes (OR 2.69, CI 1.07, 6.8, p = 0.04) and growths (OR 4.16, CI 1.04, 16.6, p = 0.04). A lack of diagnosis was significantly associated with a recommendation for referral for biopsy (OR 0.03, CI 0.01, 0.10, p < 0.0001) or for in-person consultation (OR 0.19, CI 0.05, 0.66, p < 0.001). In conclusion, pediatric teledermatologists are able to make a diagnosis most of the time, regardless of historical information provided or image quality. The rate of diagnosis may be improved with the use of standardized templates for historical information. Similarly, photography training could minimize the need for in-person consultation. Specific information regarding prior treatments could also help in providing useful management recommendations.

Complementary and alternative medicine use and adherence with pediatric asthma treatment.

BACKGROUND AND OBJECTIVE: Complementary and alternative medicine (CAM) use for pediatric asthma is increasing. The authors of previous studies linked CAM use with decreased adherence to conventional asthma medicines; however, these studies were limited by cross-sectional design. Our objective was to assess the effect of starting CAM on pediatric adherence with daily asthma medications. METHODS: We used a retrospective cohort study design. Telephone surveys were administered to caregivers of patients with asthma annually from 2004 to 2007. Dependent variables were percent missed doses per week and a previously validated "Medication Adherence Scale score." Independent variables included demographic factors, caregiver perception of asthma control, and initiation of CAM for asthma. We used multivariate linear regression to assess the relationship between medication adherence and previous initiation of CAM. RESULTS: From our longitudinal data set of 1322 patients, we focused on 187 children prescribed daily medications for all 3 years of our study. Patients had high rates of adherence. The mean percent missed asthma daily controller medication doses per week was 7.7% (SD = 14.2%). Medication Adherence Scale scores (range: 4-20, with lower scores reflecting higher adherence) had an overall mean of 7.5 (SD = 2.9). In multivariate analyses, controlling for demographic factors and asthma severity, initiation of CAM use was not associated with subsequent adherence (P > .05). CONCLUSIONS: The data from this study suggest that CAM use is not necessarily "competitive" with conventional asthma therapies; families may incorporate different health belief systems simultaneously in their asthma management. As CAM use becomes more prevalent, it is important for physicians to ask about CAM use in a nonjudgmental fashion.

Barriers to palliative care for children: perceptions of pediatric health care providers.

OBJECTIVE: The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS: This study explored pediatric provider perceptions of end-of-life care in an academic children's hospital, with the goal of describing perceived barriers to end-of-life care for children and their families. The report focuses on the responses of nurses (n = 117) and physicians (n = 81). RESULTS: Approximately one half of the respondents reported 4 of 26 barriers listed in the study questionnaire as frequently or almost always occurring, that is, uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%). Approximately one third of respondents cited another 8 barriers frequently arising from problems with communication and from insufficient education in pain and palliative care. Fourteen barriers were perceived by >75% of staff members as occasionally or never interfering with pediatric end-of-life care. Comparisons between physicians and nurses and between ICU and non-ICU staff members revealed several significant differences between these groups. CONCLUSIONS: Perceived barriers to pediatric end-of-life care differed from those impeding adult end-of-life care. The most-commonly perceived factors that interfered with optimal pediatric end-of-life care involved uncertainties in prognosis and discrepancies in treatment goals between staff members and family members, followed by barriers to communication. Improved staff education in communication skills and palliative care for children may help overcome some of these obstacles, but pediatric providers must realize that uncertainty may be unavoidable and inherent in the care of seriously ill children. An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care.