2020 Survey Results - Country Specific Needs Analysis

The tables below show the top five needs identified by respondents in each of the seven countries with the highest number of respondents. These tables follow the same scoring process as described in the main post, and the countries are presented in descending order of number of respondents, the same order as the main post: UK, Brasil, USA, France, Netherlands, Canada, Australia. 

UK Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Explanation of HSP on diagnosis	31	57	232	100%
Signposting about potential future needs	10	47	158	68%
Signposting about HSP information	1	32	86	37%
Fewer clinical misdiagnoses	4	26	77	33%
Information on the likelihood of the next generation having HSP	3	25	76	33%

       

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	31	41	186	100%
Information on tailoring physical activities to suit HSP	4	24	80	43%
Information on staying healthy with reduced mobility	4	25	73	39%
Information on appropriate physical activities to take part in	5	20	72	39%
Information on living with HSP and other long-term conditions	5	18	66	35%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for spasticity	29	50	202	100%
Treatment options for bladder issues	4	30	104	51%
Treatment options for pain	9	27	101	50%
Treatment options for fatigue	3	31	85	42%
Better information on existing treatments	4	26	71	35%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Predicting how HSP will progress in individuals	24	51	209	100%
Understanding the burden of HSP symptoms on people with HSP	16	39	142	68%
Understanding the day-to-day variation in HSP symptoms	1	43	113	54%
Setting up a patient registry for understanding HSP	9	33	102	49%
Understanding the prevalence of HSP symptoms	4	33	101	48%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on improving mental health/wellbeing	25	43	176	100%
Information on finding/accessing relevant healthcare professionals	14	42	167	95%
Information on obtaining benefits	6	38	123	70%
Information on finding HSP patient communities	3	32	87	49%
Information on asking for adjustments at work	4	24	75	43%

The topic Living with HSP was clearly considered to be the most important topic, followed by Treatments and Wellbeing.

Brasil Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Explanation of HSP on diagnosis	19	37	140	100%
Signposting about HSP information	9	36	124	89%
Signposting about potential future needs	7	42	120	86%
Having genetic tests available for more types of HSP	12	36	114	81%
Understanding what a genetic diagnosis means	5	34	102	73%

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	26	50	214	100%
Information on appropriate physical activities to take part in	17	48	192	90%
Information on tailoring physical activities to suit HSP	5	25	82	38%
Information on how best to walk	2	30	78	36%
Information on living with HSP and other long-term conditions	5	22	63	29%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for spasticity	30	45	198	100%
Treatment options for pain	7	35	116	59%
Treatment options for fatigue	3	26	81	41%
Treatment options for bladder issues	6	24	78	39%
Better information on existing treatments	6	24	75	38%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Predicting how HSP will progress in individuals	13	55	185	100%
Understanding what the affected genes do	25	48	183	99%
Understanding the burden of HSP symptoms on people with HSP	14	42	154	83%
Understanding the prevalence of HSP symptoms	4	32	112	61%
Understanding the day-to-day variation in HSP symptoms	1	36	88	48%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on improving mental health/wellbeing	41	54	245	100%
Information on obtaining benefits	5	39	122	50%
Information on asking for adjustments at work	4	33	115	47%
Understanding your rights	2	37	100	41%
Information on communicating with healthcare professionals	4	33	96	39%

The topic Treatments was clearly considered to be the most important topic, with all other topics scoring similarly, Diagnosis and inheritance and Wellbeing scoring slightly higher than the others.

USA Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Explanation of HSP on diagnosis	20	41	163	100%
Signposting about potential future needs	2	31	86	53%
Understanding what a genetic diagnosis means	2	29	79	48%
Fewer clinical misdiagnoses	5	21	75	46%
Having genetic tests available for more types of HSP	6	22	67	41%

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	28	35	162	100%
Information on appropriate physical activities to take part in	2	18	60	37%
Information on how to select mobility aids	2	20	58	36%
Information on tailoring physical activities to suit HSP	4	15	53	33%
Information on types of modifications around the home	2	17	48	30%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for spasticity	33	42	198	100%
Treatment options for pain	5	27	96	48%
Treatment options for bladder issues	4	27	89	45%
Better information on existing treatments	2	24	72	36%
Treatment options for fatigue	0	20	55	28%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Predicting how HSP will progress in individuals	13	39	149	100%
Understanding the burden of HSP symptoms on people with HSP	9	30	109	73%
Understanding what the affected genes do	9	30	89	60%
Understanding the prevalence of HSP symptoms	10	22	84	56%
Understanding the day-to-day variation in HSP symptoms	2	29	84	56%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on improving mental health/wellbeing	19	36	150	100%
Information on finding/accessing relevant healthcare professionals	10	34	112	75%
Information on communicating with healthcare professionals	4	25	85	57%
Information on obtaining benefits	4	23	70	47%
Information on finding HSP patient communities	3	21	63	42%

The topic Living with HSP was considered to be the most important topic, followed by Treatments and Wellbeing.

France Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Explanation of HSP on diagnosis	19	32	128	100%
Signposting about potential future needs	8	28	103	80%
Reduced clinical diagnosis time	3	18	61	48%
Information on the likelihood of the next generation having HSP	3	17	53	41%
Information on the likelihood of others in family having HSP	1	20	51	40%

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	15	25	108	100%
Information on how best to walk	3	16	53	49%
Information on how to select mobility aids	3	17	51	47%
Information on getting up from falls	4	15	49	45%
Information on appropriate physical activities to take part in	3	10	40	37%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for spasticity	15	26	111	100%
Better information on existing treatments	5	22	72	65%
Treatment options for fatigue	4	21	67	60%
Treatment options for pain	5	16	62	56%
Treatment options for bladder issues	4	19	60	54%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Understanding the burden of HSP symptoms on people with HSP	10	28	104	100%
Understanding what the affected genes do	9	21	80	77%
Predicting how HSP will progress in individuals	7	24	80	77%
Understanding the day-to-day variation in HSP symptoms	2	25	62	60%
Predicting if other HSP symptoms will start over time	2	19	59	57%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on improving mental health/wellbeing	9	24	95	100%
Information on obtaining benefits	3	24	71	75%
Information on finding/accessing relevant healthcare professionals	6	20	66	69%
Information on communicating with healthcare professionals	6	16	63	66%
Understanding your rights	2	19	61	64%

The topic Living with HSP was considered to be the most important topic, followed by Treatments. Wellbeing and Diagnosis and inheritance scored similarly after treatments.

Netherlands Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Signposting about potential future needs	3	14	51	100%
Signposting about HSP information	3	15	49	96%
Explanation of HSP on diagnosis	5	11	39	76%
Reduced clinical diagnosis time	3	9	32	63%
Signposting about HSP communities	1	7	20	39%

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	7	10	45	100%
Information on staying healthy with reduced mobility	1	10	34	76%
Information on tailoring physical activities to suit HSP	2	9	32	71%
Information on how best to walk	3	8	26	58%
Information on appropriate physical activities to take part in	1	7	24	53%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for fatigue	7	13	56	100%
Better information on existing treatments	0	11	32	57%
Treatment options for spasticity	4	8	31	55%
Treatment options for other ‘pure’ HSP symptoms	1	7	24	43%
Development of new treatments	3	7	22	39%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Understanding the burden of HSP symptoms on people with HSP	4	13	50	100%
Predicting how HSP will progress in individuals	5	11	42	84%
Predicting if other HSP symptoms will start over time	1	13	40	80%
Understanding what the affected genes do	5	8	32	64%
Understanding the day-to-day variation in HSP symptoms	2	11	30	60%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on finding/accessing relevant healthcare professionals	7	16	57	100%
Information on improving mental health/wellbeing	7	14	54	95%
Information on communicating with healthcare professionals	2	8	27	47%
Information on asking for adjustments at work	1	5	20	35%
Information on finding HSP patient communities	1	6	18	32%

The topic Living with HSP was clearly considered to be the most important topic, followed by Treatments. The other topics scored relatively few points.

Canada Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Explanation of HSP on diagnosis	9	12	54	100%
Signposting about potential future needs	1	10	29	54%
Information on the likelihood of others in family having HSP	1	8	26	48%
Having genetic tests available for more types of HSP	3	8	25	46%
Fewer clinical misdiagnoses	1	6	22	41%

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	4	9	35	100%
Information on living with HSP and other long-term conditions	4	8	30	86%
Information on tailoring physical activities to suit HSP	3	6	26	74%
Information on appropriate physical activities to take part in	1	8	25	71%
Information on how levels of participation may change over time	2	5	20	57%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for spasticity	9	11	51	100%
Treatment options for pain	1	8	28	55%
Treatment options for fatigue	1	9	27	53%
Treatment options for bladder issues	1	6	20	39%
Better information on existing treatments	1	7	18	35%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Understanding the burden of HSP symptoms on people with HSP	5	11	42	100%
Predicting how HSP will progress in individuals	3	11	38	90%
Understanding what the affected genes do	4	8	32	76%
Setting up a patient registry for understanding HSP	1	11	26	62%
Understanding the day-to-day variation in HSP symptoms	0	12	26	62%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on improving mental health/wellbeing	6	14	52	100%
Information on finding/accessing relevant healthcare professionals	3	12	42	81%
Information on communicating with healthcare professionals	3	10	40	77%
Information on obtaining benefits	2	6	22	42%
Information on finding HSP patient communities	0	8	21	40%

The topic Living with HSP was clearly considered to be the most important topic, followed by Treatments. The other topics scored similarly.

Australia Respondents Needs Analysis Pack

Diagnosis and inheritance needs	1st Rank	Total Votes	Score	Percent
Explanation of HSP on diagnosis	10	16	65	100%
Information on the likelihood of others in family having HSP	2	8	29	45%
Signposting about potential future needs	0	10	27	42%
Understanding what a genetic diagnosis means	0	10	23	35%
Information on the likelihood of the next generation having HSP	1	8	20	31%

Living with HSP needs	1st Rank	Total Votes	Score	Percent
Stretches and exercises that help	6	14	57	100%
Information on appropriate physical activities to take part in	0	8	26	46%
Information on tailoring physical activities to suit HSP	2	7	21	37%
Understanding if any changes/new symptoms are to do with HSP	2	5	19	33%
Information on living with HSP and other long-term conditions	2	5	17	30%

Treatment needs	1st Rank	Total Votes	Score	Percent
Treatment options for spasticity	6	9	38	100%
Treatment options for fatigue	1	9	31	82%
Better information on existing treatments	3	8	29	76%
Treatment options for pain	1	7	27	71%
Treatment options for bladder issues	3	6	24	63%

Information about HSP needs	1st Rank	Total Votes	Score	Percent
Predicting how HSP will progress in individuals	7	15	62	100%
Understanding the day-to-day variation in HSP symptoms	2	12	33	53%
Understanding the burden of HSP symptoms on people with HSP	3	10	32	52%
Predicting if other HSP symptoms will start over time	0	8	28	45%
Understanding the prevalence of HSP symptoms	1	7	23	37%

Wellbeing needs	1st Rank	Total Votes	Score	Percent
Information on improving mental health/wellbeing	9	14	56	100%
Information on finding/accessing relevant healthcare professionals	1	10	34	61%
Information on communicating with healthcare professionals	2	10	33	59%
Information on finding HSP patient communities	2	11	32	57%
Information on obtaining benefits	0	7	20	36%

The topic Living with HSP was clearly considered to be the most important topic, followed by Treatments. Wellbeing and Diagnosis and inheritance scored similarly after Treatments.