A Prospective, Longitudinal and Exploratory Study of Head and Neck Lymphoedema and Dysphagia Following Chemoradiotherapy for Head and Neck Cancer.

The aim of the study was to examine the following: (a) the trajectory of external and internal head and neck lymphoedema (HNL) in patients with head and neck cancer (HNC) up to 12 months post-chemoradiotherapy (CRT) and (b) the relationship between HNL and swallowing function. Using a prospective longitudinal cohort study, external/internal HNL and swallowing were examined in 33 participants at 3, 6 and 12 months post-CRT. External HNL was assessed using the Assessment of Lymphoedema of the Head and Neck and the MD Anderson Cancer Centre Lymphoedema Rating Scale. Internal HNL was rated using Patterson's Radiotherapy Oedema Rating Scale. Swallowing was assessed via clinical, instrumental and patient-reported measures. Associations between HNL and swallowing were examined using multivariable regression models. External HNL was prevalent at 3 months (71%), improved by 6 months (58%) and largely resolved by 12 months (10%). In contrast, moderate/severe internal HNL was prevalent at 3 months (96%), 6 months (84%) and at 12 months (65%). More severe penetration/aspiration and increased diet modification were associated with higher severities of external HNL (p=0.006 and p=0.031, respectively) and internal HNL (p<0.001 and p=0.007, respectively), and more diffuse internal HNL (p=0.043 and p=0.001, respectively). Worse patient-reported swallowing outcomes were associated with a higher severity of external HNL (p=0.001) and more diffuse internal HNL (p=0.002). External HNL largely resolves by 12 months post-CRT, but internal HNL persists. Patients with a higher severity of external and/or internal HNL and those with more diffuse internal HNL can be expected to have more severe dysphagia.

It was just mind blowing to be honest: a qualitative phenomenological study exploring cancer survivor's experiences of indocyanine green lymphography used to inform lymphedema therapy management.

PURPOSE: A diagnosis of secondary lymphedema following cancer treatment can necessitate lifelong therapy. Indocyanine green (ICG) lymphography is a technique for visualising lymphatics to enable individualised lymphedema diagnosis, staging and therapy prescription. The participant experience of undergoing the procedure and the impact of imaging findings on lymphedema management is unknown. This study aimed to explore participant's experiences of ICG lymphography to inform cancer-related lymphedema therapy. METHODS: A qualitative phenomenological study was conducted using semi-structured interviews with 17 adult participants who had undergone ICG lymphography for stage 0 to 2 upper or lower limb secondary cancer-related lymphedema (International Society of Lymphology, Lymphology 53(1):3-10, 2020). RESULTS: Seventeen participants were included in the study ranging in age from 36 to 78 years (M = 53.8 years), the majority had a primary diagnosis of breast cancer (N = 7) or melanoma (N = 7). Three overarching themes emerged. Firstly, describing the experience of the ICG lymphography procedure. Secondly, the new knowledge explained symptoms and tailored treatment. Participants reflected on how seeing their lymphatic system helped in understanding about their lymphedema symptoms and guided changes towards more individualised lymphedema management. The final theme described the internal impact of self-knowledge, which included impacts of the new information on empowerment and motivation to self-manage participant's condition as well as their feelings. CONCLUSIONS: ICG lymphography had beneficial impacts on participant's understanding of their lymphedema symptoms and often led to changes in management, positive outcomes in response to management changes and peace of mind about management plans, leading to feeling more empowered to self-manage their condition.

Head and neck lymphoedema-research challenges during the COVID-19 pandemic.

Management of secondary head and neck lymphoedema has undergone little research investigation. Its treatment is time and labour intensive and involves multiple therapeutic modalities without a clear understanding of which is most effective. This study aimed to determine the feasibility of a randomised controlled trial comparing two therapeutic modalities to manage head and neck lymphoedema. The secondary objective was to evaluate the clinical effects of these treatments. Participants were randomised to receive treatment with manual lymphatic drainage or compression over 6 weeks, with the primary outcome-percentage tissue water-measured 12 weeks after treatment. Six participants were recruited until the study was ceased due to restrictions imposed by the COVID-19 pandemic. Some 86% of required attendances were completed. Percentage tissue water increased in all participants at 12 weeks. No consistent trends were identified between internal and external lymphoedema. The small number of people recruited to this study informs its feasibility outcomes but limits any conclusions about clinical implications.

Occupational therapy for people with mask anxiety undergoing radiotherapy.

INTRODUCTION: Up to one third of people with head and neck cancer undergoing radiation therapy experience mask anxiety. However, there is limited literature guiding the role of health professionals, including occupational therapists, in managing mask anxiety. This study aimed to explore the content of occupational therapy interactions with people who have identified mask anxiety. METHODS: A cohort of 20 participants with identified mask anxiety engaged in semi-structured interviews with occupational therapists. Theoretical thematic analysis and the framework provided by the Canadian Model of Occupational Performance and Engagement (CMOP-E) were employed to explore the content of occupational therapy interactions with people experiencing mask anxiety. RESULTS: Theoretical thematic analysis identified 13 relevant themes with 49 codes relating to the interaction between participants and occupational therapists. Analysis of these interactions identified the occupational therapy role to be holistic and multifaceted. The cognitive, affective, and institutional components of the CMOP-E were dominantly explored by the occupational therapists with participants. Occupation, spirituality, and the cultural environment were either not addressed or minimally discussed with participants. CONCLUSION: The management of mask anxiety during radiation therapy is a novel area of practice for occupational therapists. The results of this study suggest that the occupational therapy profession explores a range of factors with the person undergoing radiation therapy with mask anxiety, and that the CMOP-E model can be used to guide these interactions. Future research is required to further define this role and its efficacy in managing mask anxiety.

Incidence and risk factors for lower limb lymphedema associated with endometrial cancer: Results from a prospective, longitudinal cohort study.

BACKGROUND: Evidence on the incidence and risk factors for lower limb lymphedema (LLL) associated with endometrial cancer is limited. Our objective was to use data from a prospective, longitudinal gynecological cancer cohort study to determine LLL incidence up to 24 months post-diagnosis of endometrial cancer and to explore the relationship between personal and treatment-related factors and risk of developing LLL. METHODS: Women recently diagnosed with endometrial cancer (n = 235) were evaluated at regular intervals post-diagnosis (up to 3-monthly) using bioimpedance spectroscopy (BIS) and self-reported leg swelling (SRLS). RESULTS: Incidence of LLL at 24 months post-diagnosis was 33% and 45% according to BIS and SRLS, respectively. When analyses were restricted to obese women, incidence at 24 months post-diagnosis increased to 67% (BIS) and 54% (SRLS). Following adjusted analyses, higher body mass index was associated with higher odds of baseline lymphedema (BIS: OR 1.91, 95% CI 1.47-2.49, p < .01; SRLS: OR 1.06, 95% CI 1.00-1.12, p < .01) and LLL incidence by 24 months post-diagnosis (BIS: OR 1.29, 95% CI: 0.99-1.68, p = .055; SRLS: OR 1.06, 95% CI 1.02-1.11, p = .008). According to SRLS, presence of comorbidities was also associated with baseline lymphedema (OR: 1.43, 95% CI: 1.15-1.78, p = .001), and more extensive lymph node dissection (OR 1.06, 95% CI: 1.01-1.12, p = .026) and receipt of chemotherapy (OR: 2.65, 95% CI: 1.12-6.29, p = .027) were identified as risk factors for lymphedema incidence. CONCLUSIONS: These findings suggest that LLL following endometrial cancer is common, particularly in women with high body mass index, or comorbidities, and those requiring more extensive lymph node dissection or chemotherapy. Future studies should examine the potential of weight loss intervention as a strategy to reduce LLL incidence.

Patient perceptions of living with head and neck lymphoedema and the impacts to swallowing, voice and speech function.

Head and neck lymphoedema (HNL) is common following head and neck cancer (HNC) treatment, and may contribute to numerous physical, functional and psychological symptoms. However, its impact on swallowing, voice and speech is less well understood. The aim of this study was to use interpretive description to explore patient perceptions relating to the impact of HNL on swallowing, voice and speech. Twelve participants, >3 months post HNC treatment and experiencing some form of HNL, participated in individual, semi-structured interviews. Transcribed interviews underwent thematic analysis using an inductive approach, with subsequent member checking. Most participants felt their HNL impacted their swallowing and some had impacts on speech; although the impact on voice was less clear. Four themes emerged, including three themes relating to HNL and its impact on swallowing and speech: "it feels tight;" "it changes throughout the day;" "it requires daily self-monitoring and management;" and a fourth general theme "it affects me in other ways." Participants perceived direct impacts from HNL to swallowing and speech. They often experienced daily symptom fluctuations that required additional strategies during times of increased difficulty. Findings highlight the need to improve patient education regarding the functional impacts of HNL and the importance of self-management.

Educational interventions for the management of cancer-related fatigue in adults.

BACKGROUND: Cancer-related fatigue is reported as the most common and distressing symptom experienced by patients with cancer. It can exacerbate the experience of other symptoms, negatively affect mood, interfere with the ability to carry out everyday activities, and negatively impact on quality of life. Educational interventions may help people to manage this fatigue or to cope with this symptom, and reduce its overall burden. Despite the importance of education for managing cancer-related fatigue there are currently no systematic reviews examining this approach. OBJECTIVES: To determine the effectiveness of educational interventions for managing cancer-related fatigue in adults. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), and MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, OTseeker and PEDro up to 1st November 2016. We also searched trials registries. SELECTION CRITERIA: We included randomised controlled trials (RCTs) of educational interventions focused on cancer-related fatigue where fatigue was a primary outcome. Studies must have aimed to evaluate the effect of educational interventions designed specifically to manage cancer-related fatigue, or to evaluate educational interventions targeting a constellation of physical symptoms or quality of life where fatigue was the primary focus. The studies could have compared educational interventions with no intervention or wait list controls, usual care or attention controls, or an alternative intervention for cancer-related fatigue in adults with any type of cancer. DATA COLLECTION AND ANALYSIS: Two review authors independently screened studies for inclusion and extracted data. We resolved differences in opinion by discussion. Trial authors were contacted for additional information. A third independent person checked the data extraction. The main outcome considered in this review was cancer-related fatigue. We assessed the evidence using GRADE and created a 'Summary of Findings' table. MAIN RESULTS: We included 14 RCTs with 2213 participants across different cancer diagnoses. Four studies used only 'information-giving' educational strategies, whereas the remainder used mainly information-giving strategies coupled with some problem-solving, reinforcement, or support techniques. Interventions differed in delivery including: mode of delivery (face to face, web-based, audiotape, telephone); group or individual interventions; number of sessions provided (ranging from 2 to 12 sessions); and timing of intervention in relation to completion of cancer treatment (during or after completion). Most trials compared educational interventions to usual care and meta-analyses compared educational interventions to usual care or attention controls. Methodological issues that increased the risk of bias were evident including lack of blinding of outcome assessors, unclear allocation concealment in over half of the studies, and generally small sample sizes. Using the GRADE approach, we rated the quality of evidence as very low to moderate, downgraded mainly due to high risk of bias, unexplained heterogeneity, and imprecision.There was moderate quality evidence of a small reduction in fatigue intensity from a meta-analyses of eight studies (1524 participants; standardised mean difference (SMD) -0.28, 95% confidence interval (CI) -0.52 to -0.04) comparing educational interventions with usual care or attention control. We found low quality evidence from twelve studies (1711 participants) that educational interventions had a small effect on general/overall fatigue (SMD -0.27, 95% CI -0.51 to -0.04) compared to usual care or attention control. There was low quality evidence from three studies (622 participants) of a moderate size effect of educational interventions for reducing fatigue distress (SMD -0.57, 95% CI -1.09 to -0.05) compared to usual care, and this could be considered clinically significant. Pooled data from four studies (439 participants) found a small reduction in fatigue interference with daily life (SMD -0.35, 95% CI -0.54 to -0.16; moderate quality evidence). No clear effects on fatigue were found related to type of cancer treatment or timing of intervention in relation to completion of cancer treatment, and there were insufficient data available to determine the effect of educational interventions on fatigue by stage of disease, tumour type or group versus individual intervention.Three studies (571 participants) provided low quality evidence for a reduction in anxiety in favour of the intervention group (mean difference (MD) -1.47, 95% CI -2.76 to -0.18) which, for some, would be considered clinically significant. Two additional studies not included in the meta-analysis also reported statistically significant improvements in anxiety in favour of the educational intervention, whereas a third study did not. Compared with usual care or attention control, educational interventions showed no significant reduction in depressive symptoms (four studies, 881 participants, SMD -0.12, 95% CI -0.47 to 0.23; very low quality evidence). Three additional trials not included in the meta-analysis found no between-group differences in the symptoms of depression. No between-group difference was evident in the capacity for activities of daily living or physical function when comparing educational interventions with usual care (4 studies, 773 participants, SMD 0.33, 95% CI -0.10 to 0.75) and the quality of evidence was low. Pooled evidence of low quality from two of three studies examining the effect of educational interventions compared to usual care found an improvement in global quality of life on a 0-100 scale (MD 11.47, 95% CI 1.29 to 21.65), which would be considered clinically significant for some.No adverse events were reported in any of the studies. AUTHORS' CONCLUSIONS: Educational interventions may have a small effect on reducing fatigue intensity, fatigue's interference with daily life, and general fatigue, and could have a moderate effect on reducing fatigue distress. Educational interventions focused on fatigue may also help reduce anxiety and improve global quality of life, but it is unclear what effect they might have on capacity for activities of daily living or depressive symptoms. Additional studies undertaken in the future are likely to impact on our confidence in the conclusions.The incorporation of education for the management of fatigue as part of routine care appears reasonable. However, given the complex nature of this symptom, educational interventions on their own are unlikely to optimally reduce fatigue or help people manage its impact, and should be considered in conjunction with other interventions. Just how educational interventions are best delivered, and their content and timing to maximise outcomes, are issues that require further research.

A prospective observational cohort study examining the development of head and neck lymphedema from the time of diagnosis.

INTRODUCTION: Head and neck lymphedema can occur in the internal or external structures of the head and neck region. Little is known about the development of this condition over the course of treatment for head and neck cancer. This study aimed to observe the development of internal and external lymphedema from diagnosis to 12 weeks postacute treatment. METHODS: A single center, prospective observational cohort study assessed participants for external lymphedema, internal lymphedema, quality of life, and symptom burden. Assessments were conducted prior to starting radiotherapy (RT), at the end of RT, 6 and 12 weeks after RT. RESULTS: Forty-six participants were recruited. External lymphedema as measured by percentage water content, increased from 41.9 at baseline (95% CI: 39.3-44.4) to 50.4 (95% CI: 46.0-54.8) at 12 weeks following RT (p-value < .001). After adjusting for changes in weight and participant age at baseline, a general increase in tape measurements was observed over time with significant increases from baseline to 12 weeks post-RT for all measurement points. By 12 weeks post-RT, all participants had lymphedema present in eight of 13 internal sites assessed. CONCLUSIONS: Internal and external head and neck lymphedema was observed to increase from baseline to 12 weeks after completion of RT without abatement. People with head and neck cancer should be educated about the potentially extended duration of this treatment side effect. Further research is required to determine the point at which swelling symptoms recede.

Navigating the application of new innovations: Establishing an indocyanine green lymphography clinic in Australia.

Translation of evidence into practice in healthcare is challenging, particularly with new innovations. Indocyanine Green (ICG) lymphography is a novel innovation where the superficial lymphatics are imaged to provide information about lymphoedema diagnosis and to guide individualised therapy for a person's long-term chronic management of lymphoedema, supporting care across the continuum to the community setting. Despite the unique information ICG lymphography provides, the technology itself is complex and highly specialised and currently has limited adoption in clinical practice. This paper sought to determine the barriers and enablers to establishing an ICG lymphography clinic within an outpatient lymphoedema service by exploring staff perceptions and experiences. An interpretive descriptive design was used with semi-structured interviews of key staff participants from a quaternary public hospital six months after ICG lymphography clinic establishment. An interview guide was developed, underpinned by the Consolidated Framework for Implementation Research (CFIR), to guide the inquiry. Interview data were transcribed, inductively coded and analysed to identify themes. All eligible management, clinical and ancillary staff were included (N = 8). Four key themes were identified from the data as essential to implementation success. These were support is critical for implementation; beliefs about the technology; practicalities are achievable; and sustainability for ongoing success. Themes were found to be interrelated and centred around support from staff and the organisation as a critical process facilitator. The study demonstrated an ICG lymphography clinic can be successfully established as part of an outpatient lymphoedema service. Key enablers related to positive staff attitudes and beliefs about ICG lymphography and its application. Future implementation sites may consider that although the complexity of this innovation creates process challenges, the use of an implementation framework can assist in identifying determinants of success for effective implementation to practice.

Student-resourced service delivery of occupational therapy rehabilitation groups: patient, clinician and student perspectives about the ingredients for success.

BACKGROUND: A number of innovative models of student practice placements are emerging due to pressures on universities to provide quality practice placements and on health services to deliver rehabilitation efficiently, safely and cost-effectively. The student-resourced service delivery (SRSD) group program is one such model in occupational therapy. There is a paucity of research evidence to guide services in planning, implementing and evaluating the SRSD model. OBJECTIVE: The study aimed to explore and identify the factors that key stakeholders perceived as contributing to the successful development and implementation of the occupational therapy student-resourced service delivery group programs. METHODS: Participants in this multi-site study were rehabilitation inpatients, clinicians, Clinical Education Liaison Managers and students completing practice placement in the student-resourced service delivery group program. Data were collected using face-to-face semi-structured interviews and focus groups. RESULTS: A total of 83 participants consented to the study. Four themes emerged from the data. Planning needs to be an iterative process that commences before and continues during the program. Support processes need to be established for students and clinicians during and across placements. The creation of an engaging, client-relevant and graded group dynamic is critical for success. Establishing a culture whereby groups are valued by the clients, therapy and multidisciplinary teams is important. CONCLUSIONS: The above-mentioned factors were perceived as contributing to successful operationalisation of a student-resourced service delivery group program, and may be helpful when developing student-resourced service delivery professional practice placements in other settings.IMPLICATIONS FOR REHABILITATIONStudent-resourced service delivery of groups are one way to achieve additional professional practice placements for students and delivery of therapy services for patients.Ongoing investment for planning and preparation, provision of continual support for students, a culture of valuing groups and students, and creating a group dynamic that engages group participants were perceived by stakeholders as key ingredients for successful implementation of the student-resourced service delivery group model.Clinicians and educators are encouraged to use the perceived success factors identified in this study as a resource for future student-resourced service delivery program development.

Association between external and internal lymphedema and chronic dysphagia following head and neck cancer treatment.

BACKGROUND: To examine the relationship between chronic external and internal head and neck lymphedema (HNL) and swallowing function in patients following head and neck cancer (HNC) treatment. METHODS: Seventy-nine participants, 1-3 years post treatment were assessed for external HNL using the MD Anderson Cancer Centre Lymphedema Rating Scale, and internal HNL using Patterson's Radiotherapy Edema Rating Scale. Swallowing was assessed via instrumental, clinical and patient-reported outcome measures. RESULTS: HNL presented as internal only (68%), combined external/internal (29%), and external only (1%). Laryngeal penetration/aspiration was confirmed in 20%. Stepwise multivariable regression models, that accounted for primary site, revealed that a higher severity of external HNL and internal HNL was associated with more severe penetration/aspiration (P < .004 and P = .006, respectively), diet modification (P < .001 both), and poorer patient-reported outcomes (P = .037 and P = .014, respectively). CONCLUSION: Increased swallowing issues can be expected in patients presenting with more severe external HNL and/or internal HNL following HNC treatment.

Comparing the prevalence, location, and severity of head and neck lymphedema after postoperative radiotherapy for oral cavity cancers and definitive chemoradiotherapy for oropharyngeal, laryngeal, and hypopharyngeal cancers.

BACKGROUND: This study aimed to examine the prevalence, location, and severity of chronic internal, external, and combined head and neck lymphedema (HNL) in patients with head and neck (HNC) who were treated with definitive chemoradiotherapy (CRT) or postoperative radiotherapy (PORT). METHODS: Sixty-two participants between 1 and 3 years post-treatment were recruited. Internal HNL was rated with Patterson's Scale. External HNL was graded with the MD Anderson Cancer Center Lymphedema Rating Scale. RESULTS: Ninety-eight percent of participants presented with some form of chronic HNL. Sixty-one percent had internal HNL only, 35% had combined HNL, and 2% had external HNL only. Participants treated with PORT were more likely to experience combined HNL (69% vs 24%, P = .001), whereas those treated with CRT were more likely to have internal HNL only (74% vs 25%, P = .001). CONCLUSIONS: Chronic HNL is highly prevalent following multimodal treatment, and differences in HNL presentations exist between treatment modalities.

A prospective examination of mask anxiety during radiotherapy for head and neck cancer and patient perceptions of management strategies.

INTRODUCTION: Distress related to wearing an immobilisation mask for radiotherapy treatment (RT) is a common experience for the person undergoing RT for head and neck cancer (HNC). Described as 'mask anxiety', there is little known about the patterns of this distress through the course of the treatment or what strategies are being used by people to help alleviate mask anxiety. METHODS: The study used a prospective cohort design to examine the patterns of patient-reported mask anxiety during the course of RT, using a modified Distress Thermometer (DT) and a survey to explore strategies patients used to assist their mask anxiety. RESULTS: Thirty-five participants, who identified as experiencing mask anxiety, were followed throughout RT treatment. At baseline, females were more likely to experience higher mask anxiety (P = 0.03). Across the course of treatment, mask anxiety significantly (P < 0.001) reduced within the total cohort. In 72% of participants, the level of initial distress was found to reduce over time. Only 22% experienced mask anxiety that remained constant. Few (6%) experienced an increase in mask anxiety across the course of RT. Participants reported relying on intervention from health professionals, self-taught strategies, music, visualisation and medication to manage their mask anxiety. CONCLUSIONS: Due to its high prevalence and variable patterns over time, it is recommended that routine screening for mask anxiety be implemented as standard care throughout the course of RT for HNC. Multiple, diverse strategies are being used by patients and studies are needed to develop effective interventions for managing mask anxiety.

Head and neck lymphedema management: Evaluation of a therapy program.

BACKGROUND: The purpose of this pilot study was to examine a therapeutic intervention for head and neck lymphedema. The 22-week intervention involved therapist-led care and participant self-management. Effectiveness was evaluated using a previously described lymphedema assessment tool, the Assessment of Lymphedema of the Head and Neck (ALOHA) to detect change over the course of the 22 weeks of treatment, and before and after a single treatment session. METHODS: A prospective observational pilot study was conducted with a cohort of 10 participants assessed. Measurements of size (tape measurements) and water content (tissue dielectric constant [TDC]) were used, per the ALOHA protocol. Participants received 13 lymphedema therapy treatments at reducing frequencies over 22 weeks and daily self-management. RESULTS: There was an overall significant reduction in lower neck circumference (F [2.15,19.35] = 7.11; P = .004), upper neck circumference (F [5,45] = 7.27; P < .001) and TDC (F (5,45) = 8.92; P < .001) over time. There were no significant differences over the course of treatment for mean ear-to-ear measurements or before and after a single session of treatment. CONCLUSION: This pilot study found a reduction in head and neck lymphedema over the 22-week lymphedema treatment course. This intervention may be successful in reducing head and neck lymphedema; however, further studies are needed to investigate these findings in a larger sample with the use of a control group to negate improvements from healing over time.

A mixed methods examination of distress and person-centred experience of head and neck lymphoedema.

PURPOSE: This study aimed to examine the course and nature of distress and quality of life (QoL) during and after head and neck lymphoedema (HNL) treatment in people who developed HNL following treatment for head and neck cancer (HNC). METHODS: This study (n = 10) used a mixed method explanatory design to explore distress associated with HNL. Component 1 used a prospective repeated measures design to examine distress during a 22-week HNL program. Component 2 used a qualitative interview approach to understand the patient experience of distress after completion of HNL treatment. RESULTS: During the HNL program distress associated with HNL significantly reduced from baseline to week 6 (p = 0.015), and baseline to week 22 (p = 0.007). There were no significant differences in QoL, body image or fear of cancer progression over time. Self-reported presence of HNL significantly reduced from baseline to week 6 (p = 0.02), week 6 to week 22 (p = 0.026), and from baseline to week 22 (p = 0.001). Qualitative interviews using thematic analysis following HNL treatment, revealed 6 major themes associated with the experiences of distress related to HNL - psychological impact; physical appearance and pattern/timing; experience of receiving treatment; day to day impact; supports that helped manage distress; and adjustment to a new normal. CONCLUSIONS: This study found that distress associated with cancer treatment-related HNL may reduce with the delivery of a HNL program. Interview data following completion of the HNL treatment identified several themes related to HNL and its relationship with distress, function and day-to-day life. CLINICAL TRIAL REGISTRATION: HREC/12/QPAH/295.

Exploring the prevalence and experience of mask anxiety for the person with head and neck cancer undergoing radiotherapy.

INTRODUCTION: While use of a thermoplastic mask during radiotherapy (RT) treatment for head and neck cancer (HNC) is an essential component of safe patient care, there is little understanding of the extent to which this evokes anxiety (i.e. "mask anxiety") for the person undergoing treatment. METHODS: A mixed method, convergent design was used to examine the prevalence and experience of mask anxiety using two clinical cohorts. In phase one, a cohort of 100 patients undergoing RT for HNC were assessed for self-perceived mask anxiety using a modified distress thermometer screening tool. In phase two, a separate cohort of 20 patients who identified as having mask anxiety participated in individual interpretative descriptive interviews to explore the nature of their experience. RESULTS: In phase one, 26% of participants self-identified as being anxious about the use of a thermoplastic mask. In phase two thematic analysis of the interviews revealed two over-arching themes relating to the person's experience of mask anxiety: contributors to the mask anxiety (vulnerability, response to experience and expectations); and how the person was going to manage the mask anxiety during treatment (strategies and mindset). CONCLUSIONS: Mask anxiety impacted a quarter of participants undergoing radiotherapy for HNC. In line with the themes elicited from the participants, implementation of routine screening to ensure early identification, and patient education to assist preparation for wearing the mask during RT are strategies that could improve current management of mask anxiety.