A survey of quality-of-life tools used in the routine care of patients with multiple myeloma.

BACKGROUND: New treatment options have significantly improved the life expectancy of myeloma patients such that their cause of death is increasingly likely to be from something other than myeloma. Furthermore, the adverse effects of short- or long-term treatments as well as the disease are impacting on quality of life (QoL) for longer periods of time. Understanding people's QoL and what is important to them, is part of providing holistic care. Although QoL data has been collected for many years in myeloma studies, they have not been used to inform patient outcomes. There is growing evidence that supports the assessment of 'fitness' and consideration of QoL as part of routine myeloma care. A national survey was carried out to discover which QoL tools are currently being used in the routine care of myeloma patients, by whom and at which time point. METHODS: An online survey using SurveyMonkey was adopted for flexibility and accessibility. The link to the survey was circulated via Bloodwise, Myeloma UK and Cancer Research UK contact lists. Paper questionnaires were circulated at the UK Myeloma Forum. RESULTS: Data about practices in 26 centres were collected. This included sites across England and Wales. Three out of 26 centres collect QoL data as part of standard care. QoL tools used include EORTC QLQ-My20/24, MyPOS, FACT-BMT and Quality of Life Index. Questionnaires were completed by patients before, during or after a clinic appointment. Clinical nurse specialists calculate the scores and create a care plan. CONCLUSION: Despite growing evidence to support an holistic approach to management of myeloma patients, there is a lack of evidence to confirm that health-related QoL is being addressed in standard care. This is an area that needs further research.

Trends in, and predictors of, swallowing and social eating outcomes in head and neck cancer survivors: A longitudinal analysis of head and neck 5000.

OBJECTIVE: To investigate the recovery trajectory and predictors of outcome for swallowing difficulties following head and neck cancer treatment in a large prospective cohort. MATERIALS AND METHODS: Data from 5404 participants of the Head and Neck 5000 study were collected from 2011 to 2014. Patient-reported swallowing was measured using the EORTC HN35, recorded at baseline (pre-treatment) and 4 and 12 months post-baseline. Mixed-effects linear multivariable regression was used to investigate time trends, compare cancer sites, and identify associations between clinical, socio-demographic and lifestyle variables. RESULTS: 2458 participants with non-recurrent oral (29%) oropharyngeal (46%) and laryngeal (25%) cancer were included in the analysis. There was a clinically significant deterioration in scores between baseline and four months for swallowing (11.7 points; 95% CI 10.7-12.8) and trouble with social eating (17.9 points; 95% CI 16.7-19.2), but minimal difference between baseline and 12 months. Predictors of better swallowing and social eating were participants with larynx cancer, early-stage disease, treatment type, age, gender, co-morbidity, socio-economic status, smoking behaviour and cohabitation. CONCLUSION: Swallowing problems persist up to a year after head and neck cancer treatment. These findings identify disease and demographic characteristics for particularly vulnerable groups, supporting the need for holistic interventions to help improve swallowing outcomes. People diagnosed with head and neck cancer at risk of severe eating and drinking problems following treatment can be identified earlier in the pathway, receive more accurate information about early and late post-treatment side-effects, which can inform shared decision-making discussions.

Effects of hyperbaric oxygen therapy on quality of life in maxillofacial patients with type III osteoradionecrosis.

PURPOSE: Over a 4-year period, 18 patients with type III osteoradionecrosis that developed an average of 55 months after radiotherapy treatment for head and neck cancers were referred for hyperbaric oxygen therapy (HBO(2)). MATERIALS AND METHODS: Participants completed a questionnaire battery before and after HBO(2), including the European Organization for Research and Treatment of Cancer (EORTC) Core 30, the EORTC Head and Neck 35, and the Medical Outcomes Short Form 36. RESULTS: The EORTC Core 30 questionnaire indicated significant improvements in "emotional functioning" and "insomnia" (P ≤ .01 and P ≤ .01). An improvement also was found in the "social eating" (P ≤ .01) and "teeth" (P ≤ .01) domains of the EORTC Head and Neck 35 questionnaire. These beneficial outcomes might be explained in part by the social environment of being in a specific treatment group with similar patients. However, the Medical Outcomes Short Form 36 indicated a significant decrease in "social functioning" (P ≤ .01). The patient group in this study did not undergo any surgical intervention between the 2 time points and no other interventions could be connected with the improvements, particularly in relation to "teeth." In addition, clinical follow-up confirmed the stabilization of the patients' clinical conditions. CONCLUSIONS: The findings of this study support the hypothesis that HBO(2) has positive physiologic and psychological effects on some factors for this patient group.