Societal costs of primary progressive multiple sclerosis in Australia and the economic impact of a hypothetical disease-modifying treatment that could delay disease progression

Figures & data

Table 1. Epidemiology data sources.

Population characteristic	Data source
Prevalence of PPMS	Taylor et al.^28, Jick et al.^5
Sex prevalence of PPMS	Giovannoni^4, Stellmann et al.^29, McKay et al.^12, Raghavan et al.^30
Mean age of onset of PPMS	Giovannoni^4, Stellman et al.^29, McKay et al.^12
Mean age of diagnosis of PPMS	Ahmad et al.^11
PPMS median progression time	Leray et al.^3, Stellmann et al.^29, Raghavan et al.^30
PPMS life expectancy	Jick et al.^5, Leray et al.^3, Sandi et al.^31
Prevalence of MS	2009 SDAC^32, 2012 SDAC^33, 2015 SDAC^34
Mean age at diagnosis of MS	Ahmad et al.^11
Age distribution of people with MS	2015 SDAC^34, Taylor et al.^28, Palmer et al.^35, Van Dijk et al.^21, Ahmad et al.^1
Age-sex distribution of MS	2015 SDAC^34, Taylor et al.^28

Abbreviations. MS, multiple sclerosis; PPMS, primary progressive multiple sclerosis.

Table 2. Cost items and data sources.

Cost item	Main data source(s)
Direct costs
Hospitalization	AIHW National Hospital Morbidity Database; Australian hospital statistics 2016–17: Admitted Patient Care Ch 7: Costs and funding
Medical and health professional services (e.g. visits to a general practitioner, specialist, allied health professional or other health care practitioner)	Bettering the Evaluation and Care of Health (BEACH) survey; MBS statistics; ABS Patient Experiences in Australia, 2016–17 Survey^38
Medical tests (e.g. diagnostic tests, pathology)	2017 AMSLS cost of PPMS study^11; 2010 AMSLS EIS^Citation39,Citation35
PBS medicines	PBS statistics; 2017 AMSLS cost of PPMS study^11
Other medications	2017 AMSLS cost of PPMS study^11
Residential care	Aged Care Financing Authority data; Report on Government Services 2018, Ch 14 Aged Care Services^40; 2017 AMSLS cost of PPMS study^11
Home care packages program (HCPP)	ABS 2015 SDAC^34; Aged Care Financing Authority data; Report on Government Services 2018, Ch 14 Aged Care Services^40
Commonwealth home support program (CHSP)	ABS 2015 SDAC^34; Aged Care Financing Authority data; Report on Government Services 2018, Ch 14 Aged Care Services^40
National disability insurance scheme (NDIS)	NDIS national dashboard data
Indirect costs
Disability support pension (DSP) – transfer payments	Australian Government Department of Human Services (DSS extract blue book); ABS 2015 SDAC^34
Lost productivity for people with PPMS through early retirement or reduced hours of work	2016 HILDA survey^36; STINMOD
Absenteeism and presenteeism	2016 HILDA survey^36; Chen et al.^22
Informal care	ABS 2015 SDAC^34
Carer payments and benefits	Australian Government Department of Human Services

Abbreviations. ABS, Australian Bureau of Statistics; AIHW, Australian Institute of Health and Welfare; AMSLS, Australian Multiple Sclerosis Longitudinal Study; HCPP, Home Care Packages Program; CHSP, Commonwealth Home Support Program; EIS, economic impact survey; HILDA, Household, Income and Labor Dynamics in Australia; MBS, Medicare Benefits Schedule; NDIS, National Disability Insurance Scheme; PBS, Pharmaceutical Benefits Scheme; PPMS, primary progressive multiple sclerosis; SDAC, ABS Survey of Disability, Ageing and Carers.

Table 3. Australians with PPMS as a proportion of all Australians with MS by age, gender and disease severity.

Age (years)	Females (%)			Males (%)			All persons (%)
	No. PPMS	No. MS	%	No. PPMS	No. MS	%	No. PPMS	No. MS	%
<35	47	2,461	1.9	47	561	8.4	94	3,022	3.1
35–44	156	4,414	3.5	157	1,734	9.1	313	6,148	5.1
45–54	399	6,931	5.8	400	2,239	17.9	799	9,170	8.7
55–64	564	5,203	10.8	563	2,415	23.3	1,127	7,618	14.8
65+	1,049	3,566	29.4	1,048	2,126	49.3	2,097	5,692	36.8
Mild (EDSS 0–3.5)	–	–	–	–	–	–	753	13,610	5.5
Moderate (EDSS 4–6.5)	–	–	–	–	–	–	1,194	14,242	8.4
Severe (EDSS 7–9.5)	–	–	–	–	–	–	2,483	3,798	65.4
All	2,215	22,575	9.4	2,215	9,075	23.3	4,430	31,650	14.0

Abbreviations. EDSS, Expanded Disability Status Scale; MS, multiple sclerosis; PPMS, primary progressive multiple sclerosis.

Table 4. Direct and indirect costs by symptom severity (AU$million 2018).

	Mild (EDSS 0–3.5)	Moderate (EDSS 4–6.5)	Severe (EDSS 7–9.5)	All	% of costs (All)
Direct costs (AU$millions)
Hospitalization	0.791	2.311	12.197	15.299	3.7
Medical and health professional services	0.946	1.385	2.832	5.163	1.2
Medical tests	0.175	0.393	0.441	1.009	0.2
Medications	3.834	3.396	9.891	17.122	4.1
Residential care	–	12.938	40.582	53.520	12.8
Home care and support (HCPP and CHSP)	–	1.023	3.018	4.041	1.0
NDIS	–	11.735	27.945	39.680	9.5
Total direct costs	5.746	33.181	96.906	135.834	32.5
Indirect costs (AU$millions)
Disability support pension	–	12.645	26.049	38.693	9.3
Lost productivity^a	14.888	25.450	49.315	89.653	21.4
Absenteeism and presenteeism	1.725	2.797	1.789	6.311	1.5
Informal care costs^b	0.819	9.657	102.665	113.140	27.1
Carer payments^c	–	–	34.425	34.425	8.2
Total indirect costs	17.432	50.549	214.243	282.222	67.5
Total costs (AU$millions)	23.178	83.730	311.149	418.056	100.0

Abbreviations. CHSP, Commonwealth Home Support Program; EDSS, Expanded Disability Status Scale; HCPP, Home Care Packages Program; NDIS, National Disability Insurance Scheme; PPMS, primary progressive multiple sclerosis.

^aFor persons with PPMS retired from the workforce or shifting to part-time work due to PPMS.

^bCost due to lost productivity of carers.

^cIncludes carer payments and carer supplement payment.

Table 5. Employment status of people with PPMS by age, gender and symptom group (2018).

	Female					Male					All Persons
	Mild^a	Mod^b	Severe^c	All	Empl%	Mild^a	Mod^b	Severe^c	All	Empl%	Mild^a	Mod^b	Severe^c	All	Empl%
Employed
20–44 years	62	10	2	74	36.3	74	10	2	86	42.1	136	20	4	160	39.3
45–64 years	43	113	59	215	22.3	48	113	59	220	22.9	91	226	118	435	22.6
65+ years	0	0	0	0	0	0	0	0	0	0	0	0	0	0	0
All	105	123	61	289	13.0	122	123	61	306	13.8	227	246	123	595	13.4
Employed < 65 years, %	38.6	31.7	12.1	24.8		44.9	31.8	12.1	26.2		41.7	31.8	12.1	25.5
Employed total PPMS population, %	27.7	20.6	4.9	13.0		32.5	20.6	4.9	13.8		30.1	20.6	4.9	13.4
Employed full-time
20–44 years	36	5	1	42	20.8	43	5	1	49	24.1	79	10	2	91	22.5
45–64 years	25	61	29	115	11.9	28	61	29	118	12.3	53	122	59	233	12.1
65+ years	0	0	0	0	0	0	0	0	0	0	0	0	0	0	0
All	61	66	30	157	7.1	71	66	30	167	7.6	132	132	61	324	7.3
Employed < 65 years, %	22.4	17.0	6.0	13.5		26.1	17.1	6.0	14.3		24.2	17.1	6.0	13.9
Employed total PPMS population, %	16.1	11.1	2.5	7.1		18.8	11.1	2.4	7.6		17.5	11.1	2.4	7.3
Employed part-time
20–44 years	26	5	1	32	15.6	31	5	1	37	18.0	57	10	2	69	16.9
45–64 years	18	52	30	100	10.4	20	52	30	102	10.6	38	104	60	202	10.5
65+ years	0	0	0	0	0	0	0	0	0	0	0	0	0	0	0
All	44	57	31	132	5.9	51	57	31	139	6.3	95	114	62	271	6.1
Employed < 65 years, %	16.2	14.7	6.1	11.3		18.9	14.6	6.1	11.9		17.5	14.7	6.1	11.6
Employed total PPMS population, %	11.7	10.6	2.2	5.9		13.6	9.5	2.5	6.3		12.6	9.5	2.5	6.1

Abbreviations. Empl, employed; PPMS, primary progressive multiple sclerosis.

^aMild: Expanded Disability Status Scale (EDSS) 0–3.5.

^bModerate: EDSS 4–6.5.

^cSevere: EDSS 7–9.5.

Table 6. Cost of lost productivity of people with PPMS through reduced employment (2018).

	Female			Male			All PPMS
	FT	PT	FT and PT	FT	PT	FT and PT	FT	PT	FT and PT
“Expected” number employed
20–44 years	84	64	148	146	30	176	230	94	324
45–64 years	347	287	634	638	103	741	985	390	1,375
65+ years	26	60	86	77	95	172	103	155	258
Total	457	411	868	861	228	1,089	1,318	639	1,957
“Observed” number employed
20–44 years	42	32	74	49	37	86	91	69	160
45–64 years	115	100	215	118	102	220	233	202	435
65+ years	0	0	0	0	0	0	0	0	0
Total	157	132	289	167	139	306	324	271	595
People with PPMS out of the paid workforce due to PPMS
20–44	42	32	74	97	−7	90	139	25	164
45–64	232	187	419	520	1	521	752	188	940
65+	26	60	86	77	95	172	103	155	258
Total	300	279	579	694	89	783	994	368	1,362
Average gross wages and salary (from all jobs, AU$2018)^a
20–44 years	66,984	32,328	52,000	82,862	27,015	87,211	78,064	33,816	71,323
45–64 years	72,981	33,836	55,511	86,946	32,018	86,841	82,638	33,826	72,876
65+ years	62,351	22,686	34,674	61,302	18,429	37,622	61,567	20,077	36,640
Annual cost of lost wages and salaries due to PPMS, 2018 (AU$ million)
20–44 years	2.813	1.034	3.848	8.038	−0.189	7.849	10.851	0.846	11.697
45–64 years	16.932	6.327	23.259	45.212	0.032	45.244	62.144	6.359	68.503
65+ years	1.621	1.361	2.982	4.720	1.751	6.471	6.341	3.112	9.453
Total	21.366	8.723	30.089	57.970	1.594	59.564	79.336	10.317	89.653

Abbreviations. FT, full-time; PPMS, primary progressive multiple sclerosis; PT, part-time.

^a2016 HILDA data was inflated using growth in average weekly earnings.

Table 7. Cost of lost productivity through reduced employment by severity of PPMS symptoms (2018).

	Female			Male			All Persons
	FT	PT	FT and PT	FT	PT	FT and PT	FT	PT	FT and PT
Persons with mild^a PPMS out of the paid workforce due to PPMS
20–44 years	28	22	50	69	−8	61	97	14	111
45–64 years	17	17	34	49	−8	41	66	9	75
65+ years	3	6	9	8	9	17	11	15	26
Total	48	45	93	126	−7	119	174	38	212
Persons with moderate^b PPMS out of the paid workforce due to PPMS
20–44 years	7	5	12	17	0	17	24	5	29
45–64 years	68	54	122	175	−14	161	243	40	283
65+ years	5	12	17	15	19	34	20	31	51
Total	80	71	151	207	5	212	287	76	363
Persons with severe^c PPMS out of the paid workforce due to PPMS
20–44 years	7	5	12	11	1	12	18	6	24
45–64 years	147	116	263	296	23	319	443	139	582
65+ years	18	42	60	54	67	121	72	109	181
Total	172	163	335	361	91	452	533	254	787
Annual cost of lost wages and salaries due to mild^a PPMS, 2018 (AU$million)
20–44 years	1.876	0.711	2.587	5.718	−0.216	5.501	7.593	0.495	8.088
45–64 years	1.241	0.575	1.816	4.260	−0.256	4.004	5.501	0.319	5.820
65+ years	0.187	0.136	0.323	0.490	0.166	0.656	0.677	0.302	0.979
Total	3.303	1.423	4.726	10.468	−0.306	10.162	13.772	1.116	14.888
Annual cost of lost wages and salaries due to moderate^b PPMS, 2018 (AU$million)
20–44 years	0.469	0.162	0.631	1.409	0.000	1.409	1.878	0.162	2.039
45–64 years	4.963	1.827	6.790	15.216	−0.448	14.767	20.178	1.379	21.557
65+ years	0.312	0.272	0.584	0.920	0.350	1.270	1.231	0.622	1.854
Total	5.743	2.261	8.004	17.544	−0.098	17.446	23.287	2.163	25.450
Annual cost of lost wages and salaries due to severe^c PPMS, 2018 (AU$million)
20–44 years	0.469	0.162	0.631	0.911	0.027	0.939	1.380	0.189	1.569
45–64 years	10.728	3.925	14.653	25.736	0.736	26.473	36.464	4.661	41.126
65+ years	1.122	0.953	2.075	3.310	1.235	4.545	4.433	2.188	6.620
Total	12.319	5.039	17.359	29.958	1.998	31.956	42.277	7.038	49.315

Abbreviations. FT, full-time; PPMS, primary progressive multiple sclerosis; PT, part-time.

^aMild: Expanded Disability Status Scale (EDSS) 0–3.5.

^bModerate: EDSS 4–6.5.

^cSevere: EDSS 7–9.5.

Table 8. Scenario PPMS population by age, gender and disability status (2018).

	Female (No.)				Male (No.)				All persons (No.)
Age (years)	Mild	Moderate	Severe	All	Mild	Moderate	Severe	All	Mild	Moderate	Severe	All
<35	39	6	2	47	40	6	1	47	79	12	3	94
35–44	123	21	12	156	124	22	11	157	247	43	23	313
45–54	76	155	168	399	76	155	169	400	152	310	337	799
55–64	79	189	296	564	78	189	296	563	157	378	592	1,127
65+	148	195	706	1,049	146	196	706	1,048	294	391	1,412	2,097
All	465	566	1,184	2,215	464	568	1,183	2,215	929	1,134	2,367	4,430
Change in population numbers
<35	2	−1	−1	0	2	−1	−1	0	4	−2	−2	0
35–44	6	−2	−4	0	6	−2	−4	0	12	−4	−8	0
45–54	16	−5	−11	0	16	−5	−11	0	32	−10	−22	0
55–64	22	−8	−14	0	22	−8	−14	0	44	−16	−28	0
65+	42	−14	−28	0	42	−14	−28	0	84	−28	−56	0
All	88	−30	−58	0	88	−30	−58	0	176	−60	−116	0

Abbreviation. PPMS, primary progressive multiple sclerosis.

Table 9. Impact of delayed disease progression on costs of PPMS.

	Estimated costs 2018 (a)				Estimated costs intervention scenario (b)				Difference (b − a)
	Mild	Moderate	Severe	All	Mild	Moderate	Severe	All	Mild	Moderate	Severe	All
Direct costs (AU$millions)
Hospitalization	0.791	2.311	12.197	15.299	0.976	2.195	11.628	14.799	0.185	−0.116	−0.569	−0.500
Medical and health professional services	0.946	1.385	2.832	5.163	1.167	1.316	2.700	5.182	0.221	−0.070	−0.132	0.019
Medical tests	0.175	0.393	0.441	1.009	0.216	0.373	0.421	1.011	0.041	−0.020	−0.020	0.002
Medications	3.834	3.396	9.891	17.122	4.730	3.225	9.428	17.362	0.896	−0.171	−0.463	0.240
Residential care	–	12.938	40.582	53.520	–	12.385	38.702	51.087	–	−0.553	−1.880	−2.433
Home care and support (HCPP and CHSP)	–	1.023	3.018	4.041	–	0.996	2.874	3.870	–	−0.027	−0.144	−0.171
NDIS	–	11.735	27.945	39.680	–	11.251	26.293	37.544	–	−0.484	−1.652	−2.136
Total direct costs	5.746	33.181	96.906	135.834	7.089	31.741	92.046	130.855	1.343	−1.441	−4.860	−4.979
Indirect costs (AU$millions)
Disability support pension	–	12.645	26.049	38.693	–	11.992	24.783	36.775	–	−0.653	−1.266	−1.918
Lost productivity	14.888	25.450	49.315	89.653	17.535	24.306	46.395	88.237	2.647	−1.144	−2.920	−1.416
Absenteeism and presenteeism	1.725	2.797	1.789	6.311	2.007	2.697	1.712	6.416	0.282	−0.100	−0.077	0.105
Informal care costs	0.819	9.657	102.665	113.140	1.010	9.175	97.866	108.050	0.191	−0.482	−4.799	−5.090
Carer payments	–	–	34.425	34.425	–	–	32.808	32.808	−	−	−1.616	−1.616
Total indirect costs	17.432	50.549	214.243	282.222	20.552	48.170	203.564	272.286	3.120	−2.379	−10.678	−9.935
Total costs (AU$millions)	23.178	83.730	311.149	418.056	27.641	79.911	295.610	403.141	4.463	−3.820	−15.538	−14.914

Abbreviations. CHSP, Commonwealth Home Support Program; HCPP, Home Care Packages Program; NDIS, National Disability Insurance Scheme; PPMS, primary progressive multiple sclerosis.

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