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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.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.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.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.

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.

Objective: This study explored what people with cancer and their family members define as wellness, and what they perceive to be the needs to support wellness during the cancer experience. Methods: This study utilized qualitative focus groups underpinned by an interpretative descriptive design. Participants included people with a cancer diagnosis having completed/currently undergoing cancer treatment, and/or family/friends. Participants were invited to share their experience and perceptions of cancer wellness, which was then mapped in relation to Hettler's six dimensions of wellness. Results: Twenty-six participants (16 people with cancer, ten family/friends) were involved in the process. All six dimensions of wellness were reported by the groups with 19 descriptive content categories that related to these domains. The data revealed that people with cancer and family/friends have individual and diverse meanings of wellness. Participants offered suggestions for strategies to promote wellness relating to the environment and supportive care interventions. Conclusions: People with cancer and their families experience wellness individually. Cancer wellness models should consider the personal nature of wellness in relation to the six domains of wellness when developing wellness programs, including health professional access, an environment that supports wellness, the provision and access to reliable information, and support the key needs of being physically active and financial security.

IntroductionCancer-related fatigue (CRF) is one of the most common and debilitating adverse effects of cancer and its treatment reported by cancer survivors. Physical activity, psychological interventions and management of concurrent symptoms have been shown to be effective in alleviating CRF. This pilot randomised controlled trial (RCT) will determine the feasibility of a telehealth CRF clinic intervention (T-CRF) to implement evidence-based strategies and assess the impact of the intervention on CRF and other clinical factors in comparison to usual care.Methods and analysisA parallel-arm (intervention vs usual care) pilot RCT will be conducted at the Princess Alexandra Hospital in Queensland, Australia. Sixty cancer survivors aged 18 years and over, who report moderate or severe fatigue on the Brief Fatigue Inventory and meet other study criteria will be recruited. Participants will be randomised (1:1) to receive the T-CRF intervention or usual care (ie, specialist-led care, with a fatigue information booklet). The intervention is a 24-week programme of three telehealth nurse-led consultations and a personalised CRF management plan. The primary objective of this pilot RCT is to determine intervention feasibility, with a secondary objective to determine preliminary clinical efficacy. Feasibility outcomes include the identification of recruitment methods; recruitment rate and uptake; attrition; adherence; fidelity; apathy; and intervention functionality, acceptability and satisfaction. Clinical and resource use outcomes include cancer survivor fatigue, symptom burden, level of physical activity, productivity loss, hospital resource utilisation and carer’s fatigue and productivity loss. Descriptive statistics will be used to report on feasibility and process-related elements additional to clinical and resource outcomes.Ethics and disseminationThis trial is prospectively registered (ACTRN12620001334998). The study protocol has been approved by the Metro South Health and Hospital Services Human Research Ethics Committee (MSHHS HREC/2020/QMS/63495). Findings will be disseminated through peer-reviewed publications, national and international conferences and seminars or workshops.Trial registration numberAustralian New Zealand Clinical Trials Registry ID: ACTRN12620001334998; Pre-results. Trial Version: Version 1.1. Last updated 10 December 2020.

Communication skills training is standardly offered to health professionals working in cancer; however, there is no consensus on the precise style or duration of training, which is most effective. This study aimed to examine the experiences of health professionals who had participated in either a 1-day communication skills training workshop focusing on experiential learning or a 2-h workshop in which participants discussed different communication styles demonstrated on purpose-designed videotapes. Twenty health professionals comprising ten from each workshop type participated in a semi-structured interview with an interpretative descriptive design. Participant characteristics were summarised using descriptive statistics. Thematic analysis was conducted. Consistent themes across both groups were the importance of good communication and perceived barriers. All participants strongly endorsed the value of their respective training experience and considered this was due in part to the skill of facilitators and the creation of a supportive learning environment. Role plays were reported to be helpful in promoting skill development, and some participants in the 2-h workshop indicated that they would have liked the opportunity to practice new skills through role play, which was not possible in the short workshop. Participants self-reported increased confidence following both workshops and perceived improvements in delivery of person-centred care. Both the 1-day and the 2-h communication workshops were a positive experience for the groups who attended. The 1-day communication workshop offered an opportunity for experiential learning, which the 2-h group felt would have been worthwhile; however, both groups found value in attending the workshops.

IntroductionPatients undergoing treatment for cancer who require radiation therapy (RT) report anxiety specifically relating to the RT procedure. Procedural anxiety can be detrimental to treatment delivery, causing disruptions to treatment sessions, or treatment avoidance. Acute procedural anxiety is most commonly managed with anxiolytic medication. There is a need for effective, non-pharmacological interventions for patients not suitable for, or who prefer to avoid, anxiolytic medication. The primary objectives of this pilot trial are to evaluate the: (1) feasibility of conducting the Biofeedback Enabled CALM (BeCALM) intervention during RT treatment sessions; (2) acceptability of the BeCALM intervention among patients; and (3) acceptability of the BeCALM intervention among radiation therapists. The secondary objective of this pilot trial is to examine the potential effectiveness of the BeCALM intervention delivered by radiation therapists to reduce procedural anxiety during RT.Methods and analysisThis is a pilot randomised controlled trial. A researcher will recruit adult patients with cancer (3-month recruitment period) scheduled to undergo RT and meeting eligibility criteria for procedural anxiety at the Calvary Mater Hospital, Newcastle (NSW), Australia. Participants will be randomly assigned to receive treatment as usual or the BeCALM intervention (biofeedback plus brief breathing techniques). The primary outcomes are feasibility (measured by recruitment, retention rates and percentage of treatment sessions in which the intervention was successfully delivered); radiation therapists perceived feasibility and acceptability (survey responses); and patient perceived acceptability (survey responses). Secondary outcome is potential effectiveness of the intervention (as measured by the State Trait Anxiety Inventory—State subscale; the Distress Thermometer; and an analysis of treatment duration).Ethics and disseminationThe study protocol has received approval from Hunter New England Health Human Research Ethics Committee (2021/ETH11356). The results will be disseminated via peer-reviewed publications, as well as presentation at relevant conferences.Trial registration numberACTRN12621001742864.

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.

IntroductionOccupational therapists have a key role in supporting people experiencing cancer and its consequences. A complex skill mix is required to fulfil this role, creating a training need for ...

Cancer and its treatment produce significant acute and long-term adverse effects in cancer survivors, resulting in a range of supportive cancer care needs across the disease trajectory. To enhance supportive cancer care in Australia, this study sought to understand and describe conventional services offered nationwide, specific to their structure (ownership, setting, duration), process (participants, delivery mode, referral pathways), and outcomes (evaluation).A survey canvassing 13 conventional supportive cancer care interventions was electronically distributed to 265 cancer organizations in all Australian states and territories over 2019 and 2020. Cancer organizations were invited to participate if they provided at least one cancer-directed treatment (ie, surgery, radiation therapy, or systemic therapies); or clinical cancer care to adults, adolescents, or children; or conventional supportive care interventions to cancer survivors.A response rate of 46% (n = 123/265) was achieved, with 72% of cancer organizations (n = 88) delivering at least one intervention. Most were provided as outpatient or inpatient services, with few at home (13%) or via telehealth (10%). Psychological therapy (90%), self-care (82%), exercise (77%), healthy eating (69%), and lymphedema (69%) services were most common. Fatigue management (51%) and pelvic health (32%) were less common. Services offering massage, return-to-work, cognitive therapy, sleep hygiene, and leisure were underrepresented (31%).Provision of conventional supportive cancer care services continues to evolve in Australia. Multiple areas of care require development of dedicated services to address supportive cancer care intervention shortfalls across the country. Online resources and telemedicine are currently underutilized modalities that are available for further development.

Communication skills training is standardly offered to health professionals working in cancer; however, there is no consensus on the precise style or duration of training, which is most effective. This study aimed to examine the experiences of health professionals who had participated in either a 1-day communication skills training workshop focusing on experiential learning or a 2-h workshop in which participants discussed different communication styles demonstrated on purpose-designed videotapes. Twenty health professionals comprising ten from each workshop type participated in a semi-structured interview with an interpretative descriptive design. Participant characteristics were summarised using descriptive statistics. Thematic analysis was conducted. Consistent themes across both groups were the importance of good communication and perceived barriers. All participants strongly endorsed the value of their respective training experience and considered this was due in part to the skill of facilitators and the creation of a supportive learning environment. Role plays were reported to be helpful in promoting skill development, and some participants in the 2-h workshop indicated that they would have liked the opportunity to practice new skills through role play, which was not possible in the short workshop. Participants self-reported increased confidence following both workshops and perceived improvements in delivery of person-centred care. Both the 1-day and the 2-h communication workshops were a positive experience for the groups who attended. The 1-day communication workshop offered an opportunity for experiential learning, which the 2-h group felt would have been worthwhile; however, both groups found value in attending the workshops.

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.

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.

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.

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

Accessing full-day communication skills training can be challenging for health professionals working in cancer care. This study aimed to examine the effectiveness of Communicating Actively, Responding Empathically (CARE Express), a modified 2-h communication skills training course, across measures of health professional confidence, skills and attitudes. Cancer care health professionals (n = 147) were recruited from allied health, nursing and medical disciplines, using a partial randomisation to allocate to three arms: control, two-hour training (CARE Express) and 1-day training (CARE). Perceived confidence and skills were measured by self-report using a purpose-built scale, and written responses to a challenging clinical encounter were obtained at baseline, post-training and three-months post-training. Attitudes toward psychosocial issues were evaluated with the Physician Belief Scale at baseline and 3 months post-training. No changes were observed in the control group (n = 50) from baseline to 3 months follow-up. Participants in the CARE Express (n = 48) and CARE (n = 49) groups had significant improvement in confidence in identifying/responding to emotions between baseline and 3 months post-training (p < 0.001), as well as their attitude toward psychosocial care (p < 0.001). A significant increase in "acknowledging" responses from baseline to 3 months was also observed for CARE Express and CARE (p < 0.001), with no difference between groups. CARE Express and CARE resulted in changes in confidence in emotional identification/response, psychosocial focus and communication skills maintained at 3 months post-training. Whilst the 1-day workshop has been regarded as gold standard, this study has revealed positive outcomes with a modified 2-h version, thus offering a potential alternate training model.

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.

There is no clinical assessment available to measure head and neck lymphedema. This study proposes the use of a tape measurement system and the MoistureMeterD (MMD) to evaluate head and neck lymphedema. The reliability and validity of these assessments was examined in 20 patients with head and neck lymphedema and 20 matched healthy controls. Interrater reliability for the MMD and 3 of the 4 tape measurements was excellent (intraclass correlation coefficients [ICCs] >0.90). Intrarater reliability of the MMD was 0.97. The MMD discriminated between patients with head and neck lymphedema and healthy controls, t(19) = 8.97, p The tape measurement system and MMD show potential as objective measurements of head and neck lymphedema with the exception of 1 tape measurement point.

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

Head and neck lymphoedema (HNL) is a persistent symptom for many patients following head and neck cancer treatment. There is limited research into the benefits of lymphoedema treatment with this population. This pilot study (n=8) employs the Assessment of Lymphoedema of Head and Neck (ALOHA) system to evaluate treatment changes in this clinical population. The ALOHA assessment combines the use of the Princess Alexandra Hospital tape measurement system and the use of Tissue Dielectric Constant (MoistureMeterD) to measure HNL. Baseline measures were taken at the start of treatment and were repeated when the participants had reduced one level on the MD Anderson Cancer Centre HNL rating scale. The MoistureMeterD and three of the four tape measurement points showed a statistically significant change over time. This indicates the ALOHA system was useful in objectively detecting changes associated with clinical improvements.

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.

There is no clinical assessment available to measure head and neck lymphedema. This study proposes the use of a tape measurement system and the MoistureMeterD (MMD) to evaluate head and neck lymphedema.The reliability and validity of these assessments was examined in 20 patients with head and neck lymphedema and 20 matched healthy controls.Interrater reliability for the MMD and 3 of the 4 tape measurements was excellent (intraclass correlation coefficients [ICCs]0.90). Intrarater reliability of the MMD was 0.97. The MMD discriminated between patients with head and neck lymphedema and healthy controls, t(19) = 8.97, p.001, whereas the tape measurements did not. Correlation between MMD score and head and neck lymphedema level ratings was significant (rho = 0.59) indicating convergent validity. Three of the tape measurements were significantly correlated with MMD scores (rho = 0.37-0.38) but not with ratings of head and neck lymphedema.The tape measurement system and MMD show potential as objective measurements of head and neck lymphedema with the exception of 1 tape measurement point.