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.

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.

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.

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.

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.

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.