Bena Cartmill

The lived experience of dysphagia following non-surgical treatment for head and neck cancer

Abstract The prevalence and severity of dysphagia in people treated non-surgically for primary head and neck cancer (HNC) is well documented. However, few studies have looked beyond the physiological impairment to explore the lived experience of dysphagia in the post-treatment period of HNC. The current study adopted a person-centred, qualitative approach to describe the experiences of people living with dysphagia in the months and years following non-surgical treatment for HNC. Using maximum variation sampling, 24 participants who had undergone radiotherapy treatment for HNC were recruited. Individual interviews were conducted to explore the impact of dysphagia on participants’ everyday lives. The themes identified included: (1) physical changes related to swallowing; (2) emotions evoked by living with dysphagia; (3) altered perceptions and changes in appreciation of food; and (4) personal and lifestyle impacts. The data revealed the breadth and significance of the impact of dysphagia on the lives of people treated curatively for HNC. Assessment and management in the post-treatment period must be sufficiently holistic to address both the changing physical states and the psychosocial needs of people with dysphagia following HNC. Rehabilitation services which focus only on impairment-based management will fail to fully meet the support needs of this clinical population.

Carers’ Experiences of Dysphagia in People Treated for Head and Neck Cancer: A Qualitative Study

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner’s dysphagia, (3) the disconnect between carers’ expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

Survivors' experiences of dysphagia-related services following head and neck cancer: Implications for clinical practice

BACKGROUND It is known that people with dysphagia experience a number of negative consequences as a result of their swallowing difficulties following head and neck cancer management (HNC). However their perceptions and experiences of adjusting to dysphagia in the post-treatment phase, and the services received to assist this process, has not been studied. AIMS To explore the lived experience of people with dysphagia following non-surgical treatment for HNC and examine their perceptions of service needs. METHODS & PROCEDURES A demographically diverse group of 24 people who had received radiotherapy for HNC in the past five years, and experienced dysphagia as a result of treatment, were recruited using maximum variation sampling. Each participant took part in a semi-structured, in-depth interview, where they reflected on their adjustment to, and recovery from dysphagia following treatment for HNC, as well as the dysphagia-related services they received during their treatment. Thematic analysis was used to analyse the transcripts and to identify key themes that emerged from the data. RESULTS The main integrative theme was the desire for ongoing access to dysphagia-related services in order to adequately manage dysphagia. Within this integrative theme were five additional themes including: (1) entering the unknown: life after treatment for HNC; (2) making practical adjustments to live with dysphagia; (3) making emotional adjustments to live with dysphagia; (4) accessing support outside the hospital services; and (5) perceptions of dysphagia-related services. CONCLUSIONS & IMPLICATIONS The interviews revealed the need for both greater access to services and a desire for services which address the multitude of issues faced by people with dysphagia following HNC in the post-treatment period. Speech and language therapists managing this caseload need to ensure post-treatment services are available and address not only the physical but also the emotional and psychosocial changes impacting people with dysphagia in order to assist them to adjust to, and live successfully with dysphagia. Further research should be conducted to support the development of innovative services and to highlight dysphagia-related survivorship issues to governing bodies/policy makers.

Examining user perceptions of SwallowIT: A pilot study of a new telepractice application for delivering intensive swallowing therapy to head and neck cancer patients.

Consumer feedback and end-user perceptions provide important information regarding the clinical acceptability of new telepractice systems. This pilot investigation aimed to evaluate end-user perceptions of a new asynchronous telepractice application, ‘SwallowIT’, designed to support patients to remotely complete intensive swallowing therapy during curative chemoradiotherapy (CRT) treatment for head and neck cancer (HNC). Insights were sought from 15 patients with oropharyngeal cancer who used SwallowIT to complete supported home swallowing therapy. Perceptions were evaluated via structured questionnaires, completed following initial orientation to SwallowIT and on completion of CRT. Semi-structured phone interviews were conducted ≥3 months post-treatment. The majority of patients reported positive initial perceptions towards SwallowIT for comfort (87%), confidence (87%), motivation (73%) and support (87%). No statistically significant change in perceptions was observed from baseline to end of CRT (p > 0.05). Thematic analysis of interviews revealed four main themes: the ease of use of SwallowIT, motivating factors, circumstances which made therapy difficult, and personal preferences for service-delivery models. These preliminary findings demonstrate that SwallowIT was well-perceived by the current group of HNC consumers and suggest that SwallowIT may be well-accepted as an alternate service-delivery model for delivering intensive swallowing therapy during CRT.

Application of the International Classification of Functioning, Disability and Health (ICF) to People with Dysphagia Following Non-surgical Head and Neck Cancer Management

The International Classification of Functioning, Disability, and Health (ICF) is an internationally recognized framework which allows its user to describe the consequences of a health condition on an individual in the context of their environment. With growing recognition that dysphagia can have broad ranging physical and psychosocial impacts, the aim of this paper was to identify the ICF domains and categories that describe the full functional impact of dysphagia following non-surgical head and neck cancer (HNC) management, from the perspective of the person with dysphagia. A secondary analysis was conducted on previously published qualitative study data which explored the lived experiences of dysphagia of 24 individuals with self-reported swallowing difficulties following HNC management. Categories and sub-categories identified by the qualitative analysis were subsequently mapped to the ICF using the established linking rules to develop a set of ICF codes relevant to the impact of dysphagia following HNC management. The 69 categories and sub-categories that had emerged from the qualitative analysis were successfully linked to 52 ICF codes. The distribution of these codes across the ICF framework revealed that the components of Body Functions, Activities and Participation, and Environmental Factors were almost equally represented. The findings confirm that the ICF is a valuable framework for representing the complexity and multifaceted impact of dysphagia following HNC. This list of ICF codes, which reflect the diverse impact of dysphagia associated with HNC on the individual, can be used to guide more holistic assessment and management for this population.

“ScreenIT”: Computerized screening of swallowing, nutrition and distress in head and neck cancer patients during (chemo)radiotherapy

BACKGROUND In light of growing service demands, the use of computerized screening processes have been proposed to optimize patient triage and enhance the efficiency and synergy of multidisciplinary care practices. This study evaluated the accuracy of a novel system, ScreenIT, to detect swallowing, nutrition and distress status in HNC patients receiving (chemo)radiotherapy ([C]RT), and facilitate appropriate referrals for MDT management. MATERIALS AND METHODS Patient-reported data obtained from ScreenIT was compared to blinded face-to-face assessment by speech pathology/dietetic clinicians across five domains: side-effects, swallowing/oral intake, nutrition, distress, and need for supportive care services. Agreement was analysed using percent exact and close agreement (PEA/PCA) and kappa statistics. RESULTS Clinically acceptable agreement (PEA/PCA 80% or higher) was achieved for the majority of domains. In areas of discordance, ScreenIT demonstrated a higher sensitivity to patient-perceived concerns, particularly regarding distress. Management pathways generated by ScreenIT initiated clinically appropriate referrals for high and medium-risk patients for swallowing/nutrition and distress. CONCLUSION Findings suggest that ScreenIT may provide an effective and efficient means of monitoring swallowing, nutrition and distress status during (C)RT, and facilitate clinically appropriate prioritization of MDT supportive care intervention.

Computer Literacy and Health Locus of Control as Determinants for Readiness and Acceptability of Telepractice in a Head and Neck Cancer Population

Understanding end-user populations is required in designing telepractice applications. This study explored computer literacy and health locus of control in head/neck cancer (HNC) patients to inform suitability for telerehabilitation. Sixty individuals with oropharygneal cancer were recruited. Computer literacy was examined using a 10-question survey. The Multidimensional Health Locus of Control Scale Form C (MHLC-C) examined perceptions of health “control”. Participants were mostly middle-aged males, from high socioeconomic backgrounds. Only 10% were non-computer users. Of the computers users, 91% reported daily use, 66% used multiple devices and over 75% rated themselves as “confident” users. More than half were open to using technology for health-related activities. High internal scores (MHLC-C) signified a belief that own behaviour influenced health status. HNC patients have high computer literacy and an internal health locus of control, both are positive factors to support telepractice models of care. This may include asynchronous models requiring heightened capacity for self-management.

Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer

Abstract Purpose: Third-party disability pertains to the consequences of a person’s impairment which impacts on the functioning and ability of their family members or significant others. With the emergence of research demonstrating the pervasive effects of dysphagia following head and neck cancer (HNC) on the carer, the aim of this study was to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe the third-party disability of carers of people with dysphagia following HNC. Method: Twelve carers of people with dysphagia following HNC participated in individual semi-structured, in-depth interviews. Categories and sub-categories identified from the qualitative analysis were mapped to the ICF using the established linking rules. Results: The majority of the categories and sub-categories from the qualitative analysis were successfully linked to the ICF with most linking to the Activities and Participation component. A number of contextual factors were also identified as impacting on the functioning of carers. Conclusions: The ICF can be successfully used to describe the third-party disability in carers of people with dysphagia following HNC management. This information could be used by clinicians, researchers and policy makers to help establish evidence-based guidelines that include carers in the assessment and management of dysphagia associated with HNC. Implications for Rehabilitation Clinical levels of distress and reduced quality of life have been associated with caring for a person with dysphagia following head and neck cancer. The flow-on effects of dysphagia experienced by a carer or close family member can be understood as a third-party disability, which impacts on their functioning, activities and participation in the context of the environment and personal factors. Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the assessment and support of this population, and advocate for the inclusion of the concerns of the carer in dysphagia management.

Application of telepractice for head and neck cancer management: a review of speech language pathology service models

Purpose of review Head and neck cancer (HNC) is a complex and heterogeneous disease, requiring specialist intervention from a multidisciplinary team including speech language pathology (SLP). Unfortunately, multiple patient and service-related challenges exist which currently limit equitable access to SLP support for all individuals. This review highlights the existing evidence for different telepractice models designed to help patients and services optimize management of swallowing and communication disorders arising from HNC. Recent findings Emerging evidence exists for using computerized screening to enhance the identification of treatment-related toxicities and assist referrals to services, including SLP. Asynchronous telepractice applications are being used to assist delivery of intensive home-based dysphagia therapy, whereas videoconferencing can offer a feasible and effective method to support ongoing management for patients with limited access to local specialist SLP services. Patient and clinician satisfaction with all models has been high. Summary SLP services can be redesigned to incorporate a range of telepractice models to optimize clinical care at different stages of the HNC survivorship pathway. Early evidence supports telepractice can improve patient access to services, enhance outcomes, and optimize health service efficiency; however, further systematic research is needed into these models, particularly relating to large-scale implementation and costs/economic analyses.

Oral Health, Dysphagia, Distress, and Health Service Needs of Head and Neck Cancer Survivors 5 Years Post-Chemoradiotherapy

Purpose: Evidence suggests that oral health effects and dysphagia remain chronic conditions for patients who undergo radiotherapy with or without chemotherapy ([chemo]RT) following diagnosis of head and neck cancer (HNC), however, there is limited outcome data beyond 1-2 years post-treatment. The aim of the current study was to investigate the long term patient outcomes at 5-6 years post- (chemo)RT using patient-reported functional measures. A secondary aim was to examine the extent of services accessed, and desired, by this group. Methods: A retrospective audit was conducted to select patients treated curatively for HNC using (C)RT and seen by speech pathology. Twenty eligible long term HNC patients treated with (chemo)RT completed a series of patient-reported outcome measures, a quality of life (QoL) scale, a general distress tool and questions relating to services. Results: Results revealed that at 5-6 years post-treatment, over half reported moderate to severe oral health effects, and only 30% tolerated a full normal diet. Moderate to severe levels of distress were reported by 25%, though global QoL remained positive. Few had sought further services for these issues. Conclusions: Persistent oral health effects, chronic swallowing difficulties, and distress are common in this population. Clinicians need to be aware of the long-term nature of patient-reported dysfunction and tailor appropriate services and supports to patient need.