Patient Perspectives on Self-Management of Voice Prostheses in Surgical Voice Restoration After Laryngectomy

Surgical Voice Restoration is the gold standard method of re-establishing spoken communication after laryngectomy, where the voice-box is surgically removed. A silicone voice prosthesis (valve) allows voicing. To minimise health risks, valves must be changed swiftly if they fail. While self-management of health conditions is considered a key NHS objective, few people with laryngectomy in the UK change their own valve, requiring ongoing clinic attendance and healthcare professional input.

To explore the perspectives of people with laryngectomy on self-changing, determining pertinent factors in decision-making around valve change methods with a view to informing clinical practice and supporting provision of personalised care.

Ten semi-structured interviews were carried out online and via telephone. Five 'self-changers' and five participants using clinician-led valve changes were recruited via social media and charitable organisations. Reflexive Thematic Analysis was used to generate themes within the data.

Thematic analysis generated three main themes. (1) My valve, my way; (2) Unequal relationships; (3) A search for normality. Data synthesis revealed patient perspectives on life with surgical voice restoration, which have otherwise not been explored in research to date. Valve leaks were associated with distress and linked to diminished social participation and quality of life. Barriers and facilitators to self-changing were highly individual, indicating the need for a personalised approach to education and decision-making around self-changing. Perceptions of disempowerment were expressed by people with laryngectomy, with limited opportunities for shared decision-making and an imbalance of power between patient and healthcare professional. Analysis also showed that self-changing may offer benefits by reducing the impact of valve changes on quality of life.

Laryngectomy and surgical voice restoration have a significant impact on the activity and participation of people with laryngectomy. Empowering people with laryngectomy to participate in shared decision-making around their care is essential. A personalised approach is required, including the provision of tools, support and opportunity to jointly make decisions around valve change methods. Clinical implications include the core elements of decision-making conversations and training processes alongside points to consider for individual clinicians, service managers and policy makers. Further research on treatment burden and shared decision-making tools is warranted.

What is already known on the subject Surgical voice restoration, using a silicone voice prosthesis (valve) to allow voice production, is considered the gold-standard in re-establishing communication after laryngectomy. The lifespan of each valve is finite, requiring swift replacement upon failure, to minimise health complications. Despite NHS objectives encouraging self-management of health conditions, a minority of people with laryngectomy learn to change their own valves; most remain reliant on healthcare professionals for valve changes. Little is known about the impact of this on daily life, as perspectives of people with laryngectomy have not been sought to date. What this paper adds to existing knowledge This study adds to the limited evidence-base around self-management in laryngectomy and represents the seldom-heard perspectives of people with laryngectomy on the consequences of surgical voice restoration on daily life. We report inequitable waiting times for valve changes and lack of confidence in out-of-hours care. We highlight pertinent factors in decision-making around valve change methods and reveal perceptions of disempowerment and restricted choice experienced by some people with laryngectomy who undergo surgical voice restoration. We raise queries over whether current practice meets multi-disciplinary recommendations around offering self-changing where appropriate. What are the potential or actual clinical implications of this work? This study demonstrates the need for a personalised approach to decision-making around valve management in surgical voice restoration. We recommend increased support and opportunity for shared decision-making in clinical practice and further research into the treatment burden of surgical voice restoration and the impact on quality of life after laryngectomy. Core elements of shared decision-making conversations and training processes pertinent to self-changing are discussed, with direct applicability to clinical contexts. Specific and actionable clinical implications are provided, relevant to individual clinicians, service managers and policy makers.