Questions/Answers

This project "The Development of a comprehensive laryngeal cancer care system" was initiated and commissioned by the Otolaryngology team of Sunpasitthiprasong Hospital. The main purpose of this project was to provide laryngeal cancer patients with the most effective healthcare services and holistic patient care in order that they could effectively communicate with others and live happily in the society. Laryngeal cancer is a disease mainly caused by smoking. Initially, laryngeal cancer patients usually present with mild hoarseness and dysphagia. The left-untreated patients could have progressed to more severe symptoms, i.e. difficult-breathing and even death. In the past, an unintegrated health care services system resulted in a delay in diagnosis and treatment, hence poor prognosis and quality of life. Moreover, advanced-laryngeal-cancer patients with Staging 3 or 4 in particular, require major surgery requiring close monitoring in a post-operation period with considerable risk of blood loss and infection. These tracheostomy patients have been affecting their physical image and unlikely difficulty speaking as a lifelong-disability. Additionally, they may suffer from feelings of discouragement, hopelessness, worthlessness and loss of self-confidence. Before 2004, laryngeal cancer patients had to communicate mainly by writing or sign language, and to practice speaking with the esophagus in facilities outside the hospital, which was logistically inconvenient. To address the above-mentioned problems, the Otolaryngology team of Sunpasitthiprasong Hospital, in collaboration with Ubon Ratchathani Cancer Hospital, developed a new collaborative model of patient care in order to shorten waiting time from diagnosis to corresponding treatments. Over 15 years, our team has developed comprehensive guidelines for taking care of the laryngeal cancer patients. By coordinating with the Thai Laryngectomees Association, we have established a “Laryngectomees Club in Ubon-Ratchathani” and desired primary aim to helping train a new generation of laryngeal cancer patients by experienced speech-language pathologist or experienced esophageal-speech patients.

Our initiative is well aligned with Category I as it focuses on the improvement of healthcare services for laryngeal cancer patients in the Health Region 10 through development of patient and family-centered care guidelines for this group of patients with universally and equally accessed care activities, ranging from collaborative approaches to diagnosis, treatment and rehabilitation to providing platform for laryngeal cancer patients to master esophageal speech and share their experience and values through peer-support group activities. These together shall help the laryngeal cancer patients to live happily in the society.

Our initiative is well aligned with Category I as it focuses on the improvement of healthcare services for laryngeal cancer patients in the Health Region 10 through development of patient and family-centered care guidelines for this group of patients with universally and equally accessed care activities, ranging from collaborative approaches to diagnosis, treatment and rehabilitation to providing platform for laryngeal cancer patients to master esophageal speech and share their experience and values through peer-support group activities. These together shall help the laryngeal cancer patients to live happily in the society.

To make our initiative sustainable, a number of strategies have been implemented. First, experience and lessons learned from our 20-year-long project and would be communicated in both formal and informal, technical and non-technical public events (social campaigns, social media and educational television programs). This would lead to mutual understanding from a broader society and environment, hence their continuing support both in term of engagement of relevant parties and financial support. Collaboration with government health services and societal organization (Laryngectomees Association in Thailand) would enhance the sustainability of our initiative as it helps our project running effectively at shared reasonable costs.

Even though Thai standard healthcare through Thailand’s Universal Coverage Scheme, for many times a large number of patients complicated with limited healthcare resources and redundant multiple steps in access to Thai public health services as well as sophisticated practices in governance and public administration may have caused delay in diagnosis and treatment, hence unsatisfactory-outcomes in laryngeal-cancer patients. Therefore, our initiative working for shortfalls has to emphasis on differential efforts to improve and equal access to diagnosis, treatment and rehabilitation of these patients. This ‘No- one-left-behind’ is a core value of our project. Key strategies include working through a cross-organization multidisciplinary team to ensure that every patient receives comprehensive and standard physical and mental care. This is possible with close collaboration of Sunpasitthiprasong Hospital with government organizations under different ministries and departments (Ubon Ratchathani Cancer Hospital for radiotherapy, Provincial Social Development and Human Security Office for issuing disability certificates) and broader societal non-government organizations such as “Laryngectomees Club” for fostering esophageal speech and using electrolarynx. With these strategies, the patients have opportunity receiving the state-of-art medical care and socialize with other laryngectomy patients, and useful information and support. In turns, these patients can be a valuable asset for non-smoking campaign.

In Thai society, men are considered to be a family leader; thus, female patients sometimes are neglected concerning decisions and actions in family. Particularly, sex inequality in healthcare and treatments is prevalent in Thai and many other societies. Although there might be some biases against females in health and healthcare, and most laryngeal cancer patients are male, our initiative recognized such an issue. Therefore, in compliance to existing law and regulations concerning Thailand’s universal coverage health insurance, our team has adopted disease prevention, treatment and rehabilitation practices, regardless of gender. For example: promotion the spirit and engagement of female patients.

The target groups of this initiative were 126 laryngeal cancer patients from many provinces in the lower part of north-eastern Thailand as well as collaborators from related government and non-government organizations. Started with 126 patients treated at Sunpasitthiprasong Hospital, our project has now extended to a larger group of patients treated at hospitals in neighboring health regions. Laryngeal cancer patients would benefit from participating in our comprehensive integrated healthcare service (diagnosis – treatment – rehabilitation) orchestrated by partners from different ministries and departments as well as non-government organization. With this initiative, the laryngeal cancer patients at Sunpasitthiprasong Hospital had a satisfactory 5-year survival of 49.7%, considerably better than international standard survival of 40%. A large majority of the patients (86.7%) reported having good psychological well-being according to the Thai Mental Health Indicator (TMHI) test. Seventy-eight percent of the laryngeal cancer patients could speak using the esophagus. All patients were able to return to work and support their families and respected for their dignity as a member of society.

Over a period of more than 30 years, our initiative has evolved from a small group of clinicians to a comprehensive integrated healthcare service orchestrated by different organization, both governmental and non-governmental, to improve laryngeal cancer patient care. The project was initiated in 1980 when a group of otolaryngologists first started working at Sunpasitthiprasong Hospital, with a primary aim to improve treatment outcomes for laryngeal-cancer patients mainly through establishing and implementing guidelines for diagnosis, treatment and rehabilitation. However, during the first period of the project, time lag of patient referral for radiotherapy at a different medical institution remained a significant concern. In 2004, our team established a ‘seamless one-stop radiotherapy service’, in collaboration with Ubon Ratchathani Cancer Hospital, to reduce time to radiation therapy in that cancer-diagnosis and made successfully through mutual guidelines and bilateral agreements of the two institutions. In 2003, the team comprising of different health professionals recognized a gap for improvement in rehabilitation, which at the time was mainly carried out in outside-hospital facilities. Therefore, our team proposed project amendment to the Hospital Director to improve the quality of rehabilitation for laryngeal cancer through a “Laryngectomees Club” which was officially established in our hospital on 12th January 2004 with great support from the Thai Laryngectomees Association, particularly aiming to improve esophageal speech rehabilitation. For the past decades, our experience has received in sharing and training of esophageal speech from previous unstardard-training laryngectomy patiences. From 2011, speech-language pathologist has joined the club members to improve practice as training once a month. The patients themselves also engaged in various activities to promote better understanding of smoking associated harms and enhance stop-smoking campaign. With close collaboration with related parties and implementation of standard guidelines our Otolaryngology team has helped improve laryngeal cancer care and patient empowerment.

In this initiative period, our team had little experience in esophageal speech training. Additionally, patient’s low and irregular attendance to club activities resulted in a slower progress in their speech rehabilitation. In 2011, a new speech-language pathologist had joined with our team and got supporter staffs from Thai Laryngectomees Association. From then, a range of activities have enhanced the engagement and strengthened the relationship among club members, which consequently helped maintain positive attitudes towards the club activities. Lastly, challenges in data management are being addressed by shifting from manual to a more systematic IT-based approach to data management

According to individual institutions and non-government organizations have their own interests administration with a great level of autonomy, working across organizations may be challenging. Over years our project has developed and adopted a number of innovative actions to overcome the above issue. First, working across ministries and departments through mutual guidelines and agreements of different institutions has proved successful. Second, partnership of such as the Thai Laryngectomees Association has enhanced the project sustainability. Lastly, engagement of laryngeal-cancer patients in the process of care and Laryngectomees Club as a peer-assisting group has boosted capability and dignity of the patients and families.

According to individual institutions and non-government organizations have their own interests administration with a great level of autonomy, working across organizations may be challenging. Over years our project has developed and adopted a number of innovative actions to overcome the above issue. First, working across ministries and departments through mutual guidelines and agreements of different institutions has proved successful. Second, partnership of such as the Thai Laryngectomees Association has enhanced the project sustainability. Lastly, engagement of laryngeal-cancer patients in the process of care and Laryngectomees Club as a peer-assisting group has boosted capability and dignity of the patients and families.

Lessons learned from the project has been extended and transferred to others, both at community and individual levels. In 2005, experience and results of our project were shared in international knowledge management meetings of laryngectomees clubs from different Asian countries (Japan , Indonesia, the Philippines and Thailand). Our experience was transferred to other hospitals in neighboring health regions. For example, with our help Mukdahan Hospital successfully started its own Laryngectomees Club in 2015. Our laryngeal cancer patients participated in public events as volunteers to give health education on harmful effects of smoking to community members and leaders, after which approximately seven percent of the participants successfully stopped smoking. In 2017-18, a number of club members participated in a community-based research project entitled ‘ELEGANCE Study’ as speakers in multiple consecutive knowledge management meetings for 1,700 community members in 30 villages randomly selected from 15 districts of Ubonratchathani (more details are available at https://clinicaltrials.gov/ct2/show/NCT02967406). As a result, the percentages of individuals who reported smoking reduced from 19% to 12% over a period of two years.

This project can create the volunteer network and health communities and establishing of Mukdahan Laryngectomees Club. This club builds good relationships among members and personals. Following resulting in the sustainability of the organization and can lead to proactive development and making a campaign to stop smoking in the community. Including screening for cancer patients at an early stage. Development Job for creating a career for laryngeal patients. By coordinating regional networks with government organizations or private in the area.

This project has financial support from Sunpasitthiprasong Hospital particularly for monthly activities of Laryngectomees Club. Financial support by the hospital varied from year to year depending on activities. All costs of patient treatment and rehabilitation at Sunpasitthiprasong Hospital, Ubon Ratchathani Cancer Hospital and other healthcare services were fully reimbursed according to each patient’s health insurance. Regarding human resource, Otolaryngology and multidisciplinary team performed activities related to diagnosis, treatment and rehabilitation. Besides financial support, experience sharing and esophageal speech training in Laryngectomees Club were led by speakers and trainers from the Thai Laryngectomees Association.

Factors contributing to sustainable development in this project included both organization and activities related factors. Economically, costs of activities related to diagnosis, treatment and rehabilitation of laryngeal cancer are fully reimbursed through Thailand’s normal health insurance without out-of-pocket payment by patients. This guarantees that these core components of this project would be sustainable in the long run. Key mission of Sunpasitthiprasong Hospital is to provide high quality tertiary medical care and comprehensive healthcare. One of which is Cancer Excellent Center. Continuing support on our initiative from the hospital both strategically and financially has proved this. One of key features of our initiative that may contribute to its sustainability is getting laryngectomy patients to help their peer. From societal perspective, our project in which laryngeal cancer patients are working together with healthcare team and healthy volunteers may enhance patient’s capability and dignity in society as well as doing so would help raise public awareness on problems and consequences of this cancer, which in turns may draw in support from different other parties in the society All the above-mentioned factors together would enhances the sustainability of our project.

Yes

This project was evaluated internally by the hospital’s Otolaryngology and multidisciplinary teams through formal and informal discussion and sit visits in all involved sections and departments, from Outpatient and Inpatient Departments, Operating division to physical and mental rehabilitation. Participating in the Excellent Organization Awards, the project was evaluated by independent provincial and national selection committees.

This initiative was evaluated using the following indicators: time to surgical treatment, survival rate, patient’s ability to speak using esophageal speech and patient well-being. Time to surgical treatment was defined from diagnosis to definite surgical treatment assessed using medical record review by members of Otolaryngology team. Overall 5-year survival was 48.72% (standard 40%). Patient’ esophageal speech ability was assessed by physicians and speech-language pathologist and the value was 78%. Lastly, emotional well-being assessed using short version of Department of Mental Health standard well-being questionnaire, and 86.7% of patients rated that they had a high level of well-being.

Although most outcomes evaluated were satisfactory, some gaps for improvement certainly remain. Albeit satisfactorily high survival, there might be some groups of patients who did not survive long. Studying these groups of patients in more detail would help identify problems and this shall be used to improve related care guidelines. Although most laryngectomy patients were able to use esophageal, a significant proportion of the patients remained unable to speak using such a technique. This group of patients may be those who could not attend and therefor did not benefit from speech rehabilitation during club activities. Discussion with this group of patients would help our team to adjust our club activities to suit different groups of patients. Lastly, there were some aspects of emotional well-being that the patients may have scored low. Our team would look into assessment results to identify areas that can be improved.

This project involved both government and non-government organizations/civil society. Concerning diagnosis and treatment, core groups involved Otolaryngology and multidisciplinary team called the Otolaryngology Patient Care Team. This team included many different hospital divisions and departments such as Outpatient and Inpatient Departments, Radiology Department, Anesthesiology Department, Medical Technology, Operating Division and Referral Center. With mutual treatment guidelines, these Departments and Divisions have all played crucial roles in diagnosis and treatment of laryngeal cancer patients before sending some patients to Ubon Ratchathani Cancer Hospital for radiation treatment To return the patients back to society, the success key is speech rehabilitation and the most effective and sustainable of these working is the collaboration between government and non-government organizations as well as civil society. Cooperation of Laryngectomees Club and Laryngectomees Association in Thailand, including speech-language pathologists, psychologists, social workers and physiotherapy team. Also, over years many other public organizations have provided funding to support monthly activities of the Laryngectomees Club and community healthcare centers and health volunteers have also continued to provide support for patients in the community. Ubon Ratchathani Provincial Public Health Office and schools have also provided opportunity for the support group to launch anti-smoking campaign in the community.

The key stakeholders in this project are patients with laryngeal cancer and their family; Otolaryngology department and healthcare providers at Sunpasitthiprasong Hospital and Ubon Ratchathani Cancer Hospital; Thai Laryngectomees Association in Thailand; Regional sector 10 of the National Health Security Office (NHSO); Division of Public Health and environment of Ubon Ratchathani subdistrict-municipal office; and the Centre for Research and Cultural Development, Ubon Ratchathani University. This project started from collaboration between Sunpasitthiprasong Hospital, ENT department and healthcare providers in developing a process to provide timely service for patients with laryngeal cancer. This includes performing surgery, providing oral care prior to radiation therapy, and coordinate with Ubon Ratchathani Cancer Hospital for radiation therapy as ‘one-stop-service’. After completing radiation therapy, patients will be transferred back to Sunpasitthiprasong Hospital to sign-up for Sunpasitthiprasong Hospital Laryngectomees Support Group and learn esophageal speech. The President of Thai Laryngeal Association has been visiting Sunpasitthiprasong Hospital every 2 months from 12th January 2004 to 2011 to teach esophageal speech. Thereafter, we have speech-language pathologist joining Sunpasitthiprasong Hospital and engaging patients with the support group every month. They also provide knowledge and educate people in the community to prevent and refrain from smoking.

This learning enhances multidisciplinary teamwork between Otolaryngology department and healthcare providers, as well as public and private sectors to improve quality of life for patients with laryngeal cancer. It allows patients to maintain a happy and fulfilling life by engaging voluntary work. It also creates community-volunteer networks and strengthens relationship between patients and healthcare team. This maintains its sustainability by getting patients to teach each other to talk and establishing more support groups for laryngectomee-patients. Besides establishing the new Laryngectomees Club of Mukdahan hospital, the group activities can lead to further development of anti-smoking campaigns and screening program laryngeal cancer.