Patients served by the rare disease care team include those reported to the Ministry of Health and Welfare from hospitals across the central region.
After receiving a case, the rare disease care team first conducts a needs assessment and grading to develop an Individualized Service Plan (ISP) and carry out subsequent follow-up services. This process includes the proper arrangement and coordination of individualized services to meet the complex needs of specific clients. Based on the particular needs of each case, we refer them to appropriate medical resources or departments, or provide social resources such as long-term care. Additionally, we integrate various resources and consult with interdisciplinary medical teams to comprehensively provide the necessary care support for patients with rare diseases and their families, ensuring they have access to convenient and available services. The support we offer includes information on the impact of diseases, psychological support, reproductive care, and care consultation.
We tailor referrals to each patient’s needs, including specialist care and social resources such as long-term care. By integrating multidisciplinary services, we provide comprehensive support for patients with rare diseases and their families.
1. Disease Impact and Health Education
a. Provide health education materials to support disease understanding and management.
b. Offer key rare disease information to patients and families.
c. Explain possible effects on child growth and development.
d. Identify challenges in education and employment and suggest coping strategies.
e. Provide guidance on daily life and diet.
2. Psychological Support
a. Provide counseling information and guidance.
b. Collaborate with psychiatric teams.
c. Assist referrals to support groups.
d. Offer free counseling services.
e. Provide care during outpatient and inpatient visits.
f. Conduct home visits.
g. Support home-based palliative care.
3. Reproductive Care
a. Provide genetic counseling information.
b. Collaborate with the genetics center.
c. Promote premarital and prenatal counseling.
4. Care Advisory
a. Assist in obtaining rare disease certification.
b. Provide information on medications and support access.
c. Assist applications for special nutritional products.
d. Support multidisciplinary care coordination.
e. Facilitate access to government and social resources.
f. Provide support through private organizations.
As of 2024, our center has served a total of 614 patients, amounting to 2,208 service instances. Of these cases, 39 were new cases (5%), while 576 were ongoing cases (95%). The top five diseases treated at our center include: Multiple Sclerosis (85 patients), Wilson's Disease (40 patients), Idiopathic or Hereditary Pulmonary Arterial Hypertension (37 patients), Spinocerebellar Ataxia (34 patients), and Thalassemia Major (31 patients). Our four main services provided are: Disease Impact Information for 800 instances, Psychological Support for 333 instances, Reproductive Care for 51 instances, and Care Consultation for 679 instances.
Case managers conduct an initial needs assessment for new cases, complete assessment records, categorize case needs, and establish individualized service plans (ISP) with specific service goals and strategies. The categorization is based on the "Rare Disease Case Care Service Needs Categorization," supplemented by adjustments to the categorization.
Our center has implemented an internal audit mechanism for case service records. We have engaged professionals with backgrounds in social work and medical management who possess experience in project execution to oversee the internal auditing tasks. The auditing process utilizes quality management monitoring systems and defines specific operational procedures, including the scheduling of quarterly monitoring, the establishment of audit items, and the determination of sampling ratios according to various categorization standards.
Monitoring and Enhancement of Service Quality
With respect to the refinement of care evaluation and audit items, the standards established by the Health Promotion Administration (HPA) serve as the foundation. In addition to achieving the required targets, the center aims to ensure that service quality consistently exceeds these benchmarks. Through both internal and external audits, the quality of program implementation is further strengthened and optimized.
As of November 30, 2024, based on the Case Management Quality Indicators defined by the Health Promotion Administration, all statistical outcomes of the center have met the prescribed targets. To further enhance the quality of care services in alignment with the key focus areas set by the Health Promotion Administration, the center has established an internal audit mechanism for case service documentation. Drawing upon quality management and monitoring frameworks, operational procedures have been formulated, including:
Quarterly monitoring schedules
Defined audit items
Sampling ratios determined according to classification levels
Regarding audit personnel, the center appoints qualified professionals with backgrounds in social work and healthcare administration, as well as relevant program experience, to conduct internal audit operations.
Satisfaction Survey Implementation
The satisfaction survey for 2024 adopted the Health Promotion Administration (HPA) online questionnaire as the sole official version.
In terms of information dissemination, in addition to publishing the survey on the center’s official website, the center prioritizes conducting satisfaction surveys through its official LINE community platform. A portion of surveys is also administered via postal mail.
As of December 13, 2024, the results of the online questionnaire for the Rare Disease Care Service Satisfaction Survey have been compiled and presented.
A total of 528 valid responses were collected through the HPA online questionnaire, including:
281 patients (53.2%)
246 family members (46.6%)
1 respondent categorized as “other” (0.2%)
