Development and Application of Health Needs Assessment Tools for the Disabled Lee JY, Park JH, Eun SJ, Hong JY, Kim Y, Kim YI Department of Health Policy and Management, Seoul National University College of Medicine 28 Yongon-dong Jongno-gu, Seoul Korea 110-799 e-mail: jylee00@snu.ac.kr

Study Purpose To develop health needs assessment tools for the disabled with impairment of extremity, brain injury, visual impairment, and auditory impairment To apply tools to assess the health needs of the disabled dwelling in Seoul, Korea

Study Framework consensus HNA tool development Sampling and survey The disabled dwelling in Seoul Matched by gender, age, region Randomized stratified systematic sampling HNA tool development Sampling and survey Panel 1: impairment of extremity & brain injury 6 specialists in physical medicine and rehabilitation Panel 2: visual impairment 6 ophthalmologists Panel 3: auditory impairment 9 otorhinolaryngologists Development of HNA tools for the disabled HNA tool for the persons with amputation HNA tool for the persons with spinal cord injury HNA tool for the persons with articular disorder HNA tool for the persons with stroke and brain injury HNA tool for the persons with visual impairment HNA tool for the persons with auditory impairment Consensus panel consensus National Disability Registry database Eligibility data of National Health Insurance & Medical Aid National ID 30 66 18 12 23 24 25 Severe disability Mild disability Impairment of extremity Amputation Spinal cord injury Articular disorder 55 132 47 Total 27 31 Stroke and brain injury Visual impairment 61 57 32 29 Auditory impairment 158 153 311 Survey (May 2~June 30, 2005) Inter-scorer reliability test Measuring the scale of unmet need in the disabled Application Study Framework HNA: health needs assessment

Method 1 : Developing HNA Composing of consensus panels Panel 1: Impairment of extremity and the brain injury Six specialists in physical medicine and rehabilitation who had an experience in medical practice more than 10 years Panel 2: Visual impairment Six ophthalmologists who had an experience in medical practice more than 10 years and low vision therapy Panel 3: Auditory impairment Nine Otorhinolaryngologists who had an experience in medical practice more than 10 years and cochlear implant surgery

Method 1 : Developing HNA Selected main categories of developing HNA tools by whole panel members Medical intervention and operation Have the disabled been utilizing appropriate medical intervention and operation? Assistive devices Do the disabled have appropriate assistive devices? Rehabilitation therapy Do the disabled need rehabilitation therapy? Regular follow-up Have the disabled been checked up their health status at least once a year by medical doctor?

Method 1 : Developing HNA Process of making a consensus One or two specialists were chosen in each panel to make a draft of health needs assessment tools composed of four main categories The drafts were reviewed by each of panel members respectively and discussed openly by consensus meetings, letters, and telephone conversations Each panel member repeated the consensus process until they reached agreement on health needs assessment tools for the disabled

Method 2 : Sampling and Survey Using randomized stratified systematic sampling method for adjusting sex, age, and districts 311 registered people with disabilities who lived in Seoul were chosen and medical specialists investigated all subjects with the developed tools

Results

HNA Tool for Amputees General characteristics ID, sex, age, name, national ID, type of disability, grade of disability, cause of disability, onset year / registered year Needs of medical intervention and operation Needs of assistive devices and rehabilitation therapy Skin care of amputated end Pain control Management of cause disease or injury Assistive devices Rehabilitation therapy Artificial limb Walking assistive devices Wheelchair Automatic lift / scooter Training for artificial limb Training for articular movement and muscle strengthening Assessment of appropriateness Assessment of medical intervention and operation Assessment of assistive devices Assessment of rehabilitation therapy Assessment of regular follow up

HNA Tool for the Disabled with Spinal Cord Injury General characteristics ID, sex, age, name, national ID, type of disability, grade of disability, cause of disability, onset year / registered year Needs of medical intervention and operation Needs of assistive devices and rehabilitation therapy Sore and bladder management Examination for cystitis or nephritis Bladder examination Pain and contracture control Assistive devices Rehabilitation therapy Device for sore prevention ADL device Walking assistive device Wheelchair, lift Training for artificial limb Training for articular movement and muscle strengthening Training for function of upper extremity Walking training Respiratory rehabilitation Assessment of appropriateness Assessment of medical intervention and operation Assessment of assistive devices Assessment of rehabilitation therapy Assessment of regular follow up

HNS Tool for the Disabled with Articular Disorder General characteristics ID, sex, age, name, national ID, type of disability, grade of disability, cause of disability, onset year / registered year Needs of medical intervention and operation Needs of assistive devices and rehabilitation therapy Replacement of articular joint Injection for chondritis Pain control Assistive devices Rehabilitation therapy Assistive devices for upper / lower extremity ADL device Walking assistive device Wheelchair, scooter Training for articular movement and muscle strengthening Training for function of upper extremity Walking training Assessment of appropriateness Assessment of medical intervention and operation Assessment of assistive devices Assessment of rehabilitation therapy Assessment of regular follow up

HNA Tool for the Disabled with Stroke and Brain Injury General characteristics ID, sex, age, name, national ID, type of disability, grade of disability, cause of disability, onset year / registered year Needs of medical intervention and operation Needs of assistive devices and rehabilitation therapy Treatment for secondary infection Pain and contracture control Sore and bladder management Management of defecation Management of respiratory function Assistive devices Rehabilitation therapy Assistive devices for upper / lower extremity Arm sling Walking assistive device Wheelchair, scooter Training for articular movement and muscle strengthening Training for function of upper extremity Walking training Training for ADL Speech / cognitive therapy Swallowing training Assessment of appropriateness Assessment of medical intervention and operation Assessment of assistive devices Assessment of rehabilitation therapy Assessment of regular follow up

HNA Tool for the Disabled with Visual Impairment General characteristics ID, sex, age, name, national ID Type of disability, grade of disability, cause of disability, onset year / registered year Blindness Regular follow up Basic ophthalmologic examination Low vision (visual acuity ≥ 6/18) Regular follow up Visual acuity Intraocular pressure Refraction Slit lamp examination Fundus examination Rehabilitation (low vision clinic) Assistive devices (glasses etc.) Need assessment of medical intervention and operation Diagnosis of blindness / low vision/ normal pt. Normal pt. No Regular follow up Yes Medical intervention and operation : assessment of appropriateness

HNA Tool for the Disabled with Auditory Impairment General characteristics ID, sex, age, name, national ID Type of disability, grade of disability, cause of disability, onset year / registered year Auditory examination Hearing ability : dB, % In adults : PTA, SA In children : ABR, ASSR Indication of cochlear implantation Auditory aid trial Needs of speech therapy (rehabilitation) 3 months training Evaluation for speech and language ability Regular follow up Indication of auditory aid : assessment of appropriateness

Summary Results of HNA for the Disabled Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 63 127 121 311 61.1%  33.2% 66.8% Assistive device 97 150 310 51.6%  39.4% 60.6% Rehabilitation therapy 14 120 177 43.1%  10.4% 89.6% Regular follow up 96 187 28 91.0%  33.9% 66.1% Final appropriateness 235 13 95.8%  21.1% 78.9% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

App 39.4% App 33.2% NA 48.4% Need 51.6% NA 38.9% Need 61.1% N-App 60.6% N-App 66.8% Summary Results of HNA for the Disabled NA: non-applicable App: appropriate N-App: non-appropriate : the size of unmet needs App 10.4% App 33.9% Need 43.1% NA 56.9% NA 9.0% Need 91.0% N-App 89.6% N-App 66.1%

Summary Results of HNA for the Disabled with Impairment of Extremity Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 26 74 32 132 75.8%  26.0% 74.0% Assistive device 37 39 56 57.6%  48.7% 51.3% Rehabilitation therapy 6 64 62 53.0%  8.6% 91.4% Regular follow up 82 13 90.2%  31.1% 68.9% Final appropriateness 31 101 100.0%  23.5% 76.5% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Results of HNA for Amputees Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 1 19 10 30 66.7%  5.0% 95.0% Assistive device 11 7 12 60.0%  61.1% 38.9% Rehabilitation therapy 14 15 50.0%  6.7% 93.3% Regular follow up 25 4 86.7%  3.8% 96.2% Final appropriateness 26 100.0%  13.3% 86.7% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Results of HNA for the Disabled with Spinal Cord Injury Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 16 27 4 47 91.5%  37.2% 62.8% Assistive device 11 8 28 40.4%  57.9% 42.1% Rehabilitation therapy 1 15 31 34.0%  6.3% 93.8% Regular follow up 22 23 2 95.7%  48.9% 51.1% Final appropriateness 100.0%  34.0% 66.0% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Results of HNA for the Disabled with Articular Disorder Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 9 28 18 55 67.2%  24.3% 75.7% Assistive device 15 24 16 70.9%  38.5% 61.5% Rehabilitation therapy 4 35 10.3% 89.7% Regular follow up 14 34 7 87.3%  29.2% 70.8% Final appropriateness 11 44 100.0%  20.0% 80.0% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Results of HNA for the Disabled with Stroke and Brain Injury Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 21 31 5 57 91.2%  40.4% 59.6% Assistive device 10 28 19 66.7%  26.3% 73.7% Rehabilitation therapy 4 33 20 64.9%  10.8% 89.2% Regular follow up 27 2 96.5%  50.9% 49.1% Final appropriateness 16 41 100.0%  28.1% 71.9% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Results of HNA for the Disabled with Visual Impairment Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 10 12 39 61 36.1%  45.5% 54.5% Assistive device 8 43 29.5%  55.6% 44.4% Rehabilitation therapy 3 17 41 32.8%  15.0% 85.0% Regular follow up 22 100.0%  36.1% 63.9% Final appropriateness 11 50 18.0% 82.0% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Results of HNA for the Disabled with Auditory Impairment Category Appropriate Non-appropriate Non-applicable Total Need Appropriate rate Unmet need (A) (B) (C) (D) (E) (F) (G) Medical intervention and operation 6 10 45 61 26.2%  37.5% 62.5% Possession of hearing aids 29 26 57.4% 82.9% 17.1% Appropriateness of hearing aids 22 32 60 46.7%  21.4% 78.6% Rehabilitation therapy 1 54 11.5%  14.3% 85.7% Regular follow up 9 39 13 78.7%  18.8% 81.3% Final appropriateness 5 43 10.4% 89.6% Need(E)=(A+B)/D×100; Appropriate rate(F)=A/(A+B)×100; Unmet need(G)=1-F

Discussion This pilot study shows that the use of rehabilitation therapy and regular follow-ups were not as sufficient as the disabled were supposed to have Medical under-services of the disabled could aggravate their general health conditions and disabilities Thus, It may mean that the disabled have unmet needs for health care However, we need in-depth studies to modify tools, especially to improve the validity and the reliability

Conclusion HNA tools would help us to estimate health status of the disabled and to provide appropriate medical services to the disabled It is meaningful as a quantitative methodology for measuring unmet needs in health care of the disabled HNA should be performed regularly to all persons with disability Health authority should provide appropriate health services with the disabled according to the result of HNA