Table 2.
Detailed description of data parameters available in the MSDS-AOK PLUS linked database.
| Data Field | Description | Data Source | |||
|---|---|---|---|---|---|
| AOK PLUS | MSDS3D | ||||
| Availability | Details | Availability | Details | ||
| Sex | Categorical variable for male/female as documented in both databases | X | X | Documented at baseline | |
| Date of birth |
AOK PLUS: Year in which patient was born MSDS3D: Day, month, and year in which the patient was born |
X | X | Documented at baseline | |
| Weight | Weight in kg | X | Documented every 3–6 months | ||
| Height | Height in cm | X | Documented every 3–6 months | ||
| Date of initial MS diagnosis | Day, month, year of first MS diagnosis | Partial | If first diagnoses (ICD-10-GM) occur within data availability; based on proxy employing washout period | X | Documented at baseline; missing for some patients |
| Date of initial MS symptom | Day, month, year of onset of first MS symptom | Partial | X | Documented at baseline; missing for some patients | |
| Type of first symptoms |
AOK PLUS: Symptoms based on ICD-10-GM coding MSDS3D: Free text entry of type of symptoms observed at baseline |
Partial | Based on available ICD-10-GM coding | X | Documented at baseline; missing for some patients |
| MS subtype | MS type coded as per ICD-10-GM as newly diagnosed/CIS, RRMS, PPMS, SPMS, or unspecified and development over time | X | X | Documented every 3–6 months if applicable | |
| Concomitant diseases/diagnoses |
AOK PLUS: Record of all diagnoses of patient under insurance based on inpatient and outpatient diagnoses MSDS3D: Record of MS symptoms and related comorbidities |
X | Partial | Documented every 3–6 months if applicable | |
| Death | Binary variable indicating whether the patient has died (yes/no); if yes, day, month, and year of death | X | X | ||
| Lab tests |
AOK PLUS: All laboratory tests documented through EBM codes MSDS3D: All laboratory tests that are run within patients’ visits at ZKN. Partial external lab data available if provided by patients. |
X | Partial | Documented every 3–6 months depending on DMT use; conditional availability | |
| Lab test results | All laboratory test results that are run within patients´ visits at ZKN. Partial external lab data available if provided by patients. | Partial | Documented every 3–6 months depending on DMT use; conditional availability | ||
| Imaging |
AOK PLUS: All imaging procedures (MRI, OCT, etc.) as documented by OPS and EBM codes MSDS3D: MS specific imaging procedures including MRI and OCT |
X | X | Documented every 3–6 months or once a year depending on DMT use | |
| Imaging results | MS specific MRI and OCT images and neuroradiological findings over time as text describing amount and location of new lesions | X | Documented every 3–6 months or once a year depending on DMT use | ||
| General practitioner (GP) visits |
AOK PLUS: GP visit documented by GP specialty code a MSDS3D: GP visits conditional on if physician letter is provided by patient |
X | Partial | Conditional availability; diagnosis code not always available | |
| Neurologist visits |
AOK PLUS: Neurologists visit documented by Neurologist specialty code a MSDS3D: Neurologist visits taking place at ZKN. Partial documentation of external neurologist visits, depending on if physician letter is provided. |
X | Partial | Documented every 3–6 months; conditional availability of external neurologist visits | |
| Inpatient prescriptions |
AOK PLUS: For expensive drugs, inpatient OPS or NUB codes are used to identify inpatient prescriptions of agents. MSDS3D: DMT use and other agents used to treat MS symptoms, conditional on if hospital discharge/physician letter is provided by patient |
Partial | Partial | Documented every 3–6 months; conditional availability | |
| Outpatient prescriptions |
AOK PLUS: All prescriptions documented by ATC codes, with associated date of prescription, number, and strength of packages; treatment duration can be estimated. MSDS3D: DMT use and other agents used to treat MS symptoms |
X | Partial | ||
| Hospitalizations |
AOK PLUS: All admissions and discharge dates of hospitalizations with associated diagnoses MSDS3D: Admission and discharge dates of hospitalization if information provided by the patient or with patient permission |
X | Partial | Conditional availability | |
| Emergency Room (ER) visits |
AOK PLUS: ER visits admission and discharge dates associated with overnight inpatient admission (including diagnoses) or emergency services on evenings, weekends, or public holidays in the outpatient setting via EBM codes MSDS3D: Admission and discharge dates of ER visits if information provided by the patient or with patient permission |
Partial | Partial | Conditional availability | |
| Rehabilitation stays |
AOK PLUS: All admission and discharge dates of inpatient rehabilitation stays with associated diagnoses paid by the sickness fund b MSDS3D: Admission and discharge dates of rehabilitation stays if provided by the patient or with patient permission |
X | Partial | Conditional availability | |
| Aids and remedies |
AOK PLUS: Therapeutic devices (walkers, wheelchairs, etc.) captured via Hilfsmittel codes and remedy services provided by medically trained staff (physical, speech, occupational therapy, etc.) via Heilmittel codes MSDS3D: Partial capture of select aids (unstructured) c |
X | Partial | Aids every 3–6 months or yearly; remedies not currently available | |
| Surgical procedures |
AOK PLUS: Inpatient and outpatient procedures as documented by OPS and EBM codes, respectively MSDS3D: Any procedures or health-related assessments as provided by patients or with patient permission |
X | Partial | Conditional availability | |
| Non-surgical procedures |
AOK PLUS: Inpatient and outpatient procedures as documented by OPS and EBM codes, respectively MSDS3D: Any procedures or health-related assessments as provided by patients or with patient permission |
X | Partial | Conditional availability | |
| Primary care costs (GP) | Total associated costs of GP visits documented by GP specialty code with associated diagnoses d | X | |||
| Outpatient specialist costs | Total associated costs of specialist visits (ex. neurologist) documented by physician specialty codes with associated diagnoses (all-cause vs. MS-specific) d | X | |||
| Inpatient admission costs | Costs reported per Diagnosis Related Group (DRG) codes, including total cost of inpatient stay with associated diagnoses (all-cause vs. MS-specific) | X | |||
| Prescription costs | Cost associated to any outpatient prescriptions with associated ATC code | X | |||
| Rehabilitation costs | Costs related to inpatient rehabilitation visits with associated diagnoses (all-cause vs. MS-specific) paid by the sickness fund b | X | |||
| Costs of aids & remedies | Costs of all therapeutic devices and remedy services by medically trained staff covered by the sickness fund | X | |||
| Indirect costs due to sick leave | Based on number of days absent from work multiplied with average gross salary (all-cause vs. MS-specific) | X | |||
| Relapses | Acute presentation of patients to ZKN at onset of new or worsening symptoms with subsequent evaluation to determine whether relapse or other cause is possible | X | General documentation every 3–6 months on disease activity | ||
| Expanded Disability Status Scale (EDSS) [5] | EDSS score (0–10) assessed by physicians with associated functional system sub-scores: Ambulation (0–10), Pyramidal (0–6), Cerebellar (0–5), Brainstem (0–5), Sensory (0–6), Bowel & Bladder (0–6), Visual (0–6), and Cerebral (0–5) | X | Documentation every 3–6 months; yearly for a subset of patients | ||
| MS Performance Test (MSPT) [27] | MSPT as a digital adaptation and expansion of the paper-based Multiple Sclerosis Functional Composite (MSFC) | X | Documentation every 3–6 months as of July 2017 | ||
| Processing Speed Test (PST), digital adaption to the Symbol Digit Modalities Test (SDMT) | X | Documentation every 3–6 months | |||
| Low Contrast Letter Acuity Test (LCLAT), showing the number of correct letters at 100% and 2.5% | X | Documentation every 3–6 months | |||
| Walking Speed Test (WST), digital adaptation to the Timed 25-Foot Walk (T25-FW); result as time in minutes | X | Documentation every 3–6 months | |||
| Manual Dexterity Test (MDT), digital adaptation to the 9-Hole Peg Test (9HPT); result as time in minutes per hand | X | Documentation every 3–6 months | |||
| Patient Determined Disease Steps (PDDS) [33], patient-reported outcome of disability in MS with nine ordinal levels ranging between 0 (normal) and 8 (bedridden) | X | Documentation every 3–6 months | |||
| Quality of Life in Neurological Disorders (NeuroQoL) [29], patient-reported outcome on physical, mental, and social effects experienced by patients with MS (anxiety, depression, fatigue, upper extremity function—fine motor/activities of daily living, lower extremity function—mobility, applied cognition—general concerns and cognition–executive function, emotional and behavioral dyscontrol, positive affect and well-being; sleep disturbance, ability to participate in social roles and activities, satisfaction with social roles and activities, stigma). | X | Documentation every 6 months to yearly | |||
| MS-Health Resource Survey (HRS) [28] | Patient-reported healthcare resource utilization survey reporting direct medical costs, direct nonmedical costs) and indirect costs. | X | Documentation yearly | ||
| Early Mobility Impairment Questionnaire (EMIQ) [30] | Patient-reported questionnaire scores for nine-item EMIQ for detecting mobility impairment | X | Documentation yearly | ||
| Multiple Sclerosis Walking Scale (MSWS-12) [31] | Patient-reported MSWS-12 scores based on 12 item questionnaire to determine how much MS has limited walking ability in the past two weeks | X | Documentation yearly | ||
a Visits will be based on counted dates of invoiced EBM codes; b rehabilitation refers to inpatient rehabilitation stays paid by the sickness fund. Note that the majority of rehabilitation services are covered by the pension insurance; c documentation of all relevant aids and remedies in a structured format is planned as a future development, to be documented on each patient visit (every 3–6 months or once a year); d in the outpatient setting, services are invoiced using a system of weighted points. To assess the monetary payment, weighted points are multiplied by a uniform orientation value, defined by the National Association of Statutory Health Insurance Physicians; Additional abbreviations: ATC, Anatomical Therapeutic Chemical Classification; CIS, clinically isolated syndrome; DMT, disease-modifying therapy; EBM, German Uniform Evaluation Standard; EDSS, Expanded Disability Status Scale; ICD-10-GM, International Classification of Diseases, Tenth Revision—German Edition; MRI, magnetic resonance imaging; NUB, New Examination and Treatment Methods; OCT, optical coherence tomography; OPS, Operation and Procedure Classification System; PPMS, primary progressive multiple sclerosis; RRMS, relapsing-remitting multiple sclerosis; SPMS, secondary progressive multiple sclerosis.