Quality of Life Research

, Volume 22, Issue 6, pp 1231–1238 | Cite as

Health-related quality of life and supportive care in patients with rare long-term neurological conditions

Brief Communication

Abstract

Purpose

Rare long-term neurological conditions (rLTNCs) may have significant impact on patients’ health-related quality of life (HRQL); however, evidence is sparse. We assessed HRQL and access to supportive care in patients with rLTNCs.

Methods

Survey of patients with rare rLTNCs (motor neurone disease, Huntington’s disease, cerebellar ataxia, progressive supranuclear palsy, multiple system atrophy, Charcot–Marie–Tooth disease and postpolio syndrome) to assess current access to health and social care, and HRQL using the Euroqol EQ-5D.

Results

A total of 266 participants with rLTNCs completed the survey. The HRQL of patients is substantially reduced compared to the general population. Many patients reported pain, were anxious or depressed and experienced problems with mobility, self-care and usual activities (mean EQ-5D index scores ranged from 0.2 to 0.44). Although some patients have accessed rehabilitative services, results suggest care coordination could be improved.

Conclusions

Rare long-term neurological conditions have a significant impact on HRQL. Many patients with rLTNCs do not seem to be accessing the level of health and social care services that could improve their HRQL.

Keywords

Health-related Quality of Life Long-term neurological conditions EQ-5D Service access 

Introduction

Progressive rare long-term neurological conditions (rLTNCs) include some that are genetic, such as Huntington’s disease (HD), Charcot–Marie–Tooth (CMT) disease and dominantly inherited ataxias (ataxia), whilst others such as motor neurone disease (MND), multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and postpolio syndrome (PPS) have less clear aetiology. Unknown environmental exposures possibly acting via interaction with predisposing genes are implicated [1].

The progression of rLTNCs may affect both physical and emotional well-being with reduction in health-related quality of life (HRQL) and requires multi-disciplinary health and social care interventions [2]. Patients need information, support and rehabilitation, including the use of aids and appliances. Evidence suggests that patients with some rLTNCs experience delays on all these fronts [3]. Integrated, high-quality social and health care has the potential to improve clinical outcomes and HRQL [2, 3, 4, 5]. This study aimed to evaluate the HRQL and access to supportive health and social care in patients with these rLTNCs.

Methods

Cross-sectional survey

Between July and December 2010, patients with rLTNCs were asked to complete an online- or paper-based survey (some with a carer’s help), including questions on social care, secondary care consultations and HRQL [1]. Adult participants with CMT, HD, PSP, MSA, MND, PPS and ataxias were recruited. Ethical approval was obtained from the North Staffordshire Research Ethics Committee (reference: 08/H1204/184).

Participants were recruited through disease charities (MNDA, HD Association, MSA Trust, Ataxia UK, PSP Europe, Polio Survivors Network, CMT UK), specialist neurology clinics at University Hospital Birmingham Trust and via the UK Clinical Research Networks (Dementias and Neurodegenerative Diseases Research Network and Primary Care Research Network). Patient demographics were compared to data from The Health Improvement Network (THIN) database which includes information from 429 UK general medical practices [6].

Health-related quality of life

Health-related quality of life (HRQL) was assessed using the EQ-5D, a self-administered, validated, generic measure of health status that comprises a 5-question multi-attribute questionnaire and a visual analogue self-rating scale [7]. The EQ-5D has been validated for use in LTNCs [8]. Respondents rated severity of their current problems (on a 1–3 scale) for five dimensions of health; mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, and responses were converted into an EQ-5D score ranging from −0.594 to 1.0 (where 1 is full health) using a set of weighted preferences from the UK population [9]. The mean EQ-5D scores for patients with rLTNC were compared with type 2 diabetes [10], stroke [11, 12], depression [13] and a normative sample of the UK population [14] on a forest plot (Stats Direct, Version 2.7.8).

Supportive care

Participants described their access to domains of secondary health and social care resources and rated their care on a 5-point scale (1 = bad, 5 = good) over the preceding year. They also indicated any home adaptations or equipment in current use. An experienced clinician (CS) categorised services and resources to reflect the EQ-5D dimensions to enable comparisons between resource-use and the problems associated with each dimension. For instance, mobility needs were categorised by access to a falls specialist, orthopaedic surgeon, occupational therapist, physiotherapist, wheelchair services or mobility assessment and/or to the following assistive devices: access ramp, handrails, stair lift, wheelchair lift, walking aids or steering aids (see Appendix 1 for more details).

Statistical analysis

Analyses were performed using SAS v9.2 (SAS Institute, Cary NC). The relationship between EQ-5D score and access to supportive care (defined as the number of different types of health or social care workers accessed within the last 12 months) and time since diagnosis were assessed using linear regression accounting for condition. The relationship between evidence of moderate or extreme anxiety and depression with the condition was assessed using logistic regression.

Results

A total of 266 participants completed the survey and the EQ-5D. Fifty-six (21 %) were recruited from specialist clinics and 210 (79 %) through charities and support networks. Compared to THIN data, survey participants were older and had been diagnosed longer (Table 1). One hundred and twenty patients (45 %) reported a lack of information at the time of diagnosis; 132 (50 %) had not had a mobility assessment; and 155 (58 %) did not have a coordinating health or social care worker. One hundred and twenty-seven (48 %) patients appear to have ceased working due to their condition and 150 (56 %) have an unpaid carer (Table 1).
Table 1

Patient demographics

 

Condition

CMT

HD

MND

MSA

PPS

PSP

Ataxia

n

45

53

59

17

40

26

26

Mean age years (SD)

50.1 (16.8)

57.1 (15.4)

68.7 (9.7)

66.9 (9.2)

68.9 (8.9)

68.5 (7.1)

55.9 (12.6)

Mean age at diagnosis years (SD)

32.7 (19.7)

52.2 (14.8)

64.3 (10.7)

59.6 (14.4)

51.3 (16.3)

64.6 (7.1)

43.2 (15.0)

% Male

33.3

45.1

49.2

64.7

25.0

50.0

42.3

% Ceased working because of the condition

28.9

67.9

37.3

41.2

62.5

26.9

65.4

Mean age ceased work years (SD)

45.9 (13.2)

45.1 (12.3)

57.4 (9.2)

55.2 (5.6)

54.6 (10.7)

61.6 (5.6)

43.6 (12.2)

% Has an unpaid carer

46.7

50.9

69.5

88.2

37.5

57.7

61.5

% Paid carer

8.9

54.7

30.5

35.3

35.0

46.2

26.9

% Offered information about condition at diagnosis

42.2

56.6

67.8

47.1

55.0

65.4

38.5

% Received mobility assessment

24.4

58.5

57.6

70.6

35.0

73.1

50.0

% Coordinating health or social care worker

17.8

73.6

54.2

52.9

17.5

42.3

19.2

Comparative data from UK general practicea

 N

518

323

811

80

186

 Mean age (SD)

45.7 (21.7)

51.3 (14.8)

63.5 (15.3)

65.2 (13.0)

69.5 (10.0)

 Mean age at diagnosis (SD)

43.0 (22.7)

48.2 (14.9)

63.5 (16.1)

67.1 (12.8)

70.9 (9.9)

 % Male

267 (51.5 %)

157 (48.6 %)

461 (56.8)

48 (60.0 %)

115 (61.8 %)

CMT Charcot–Marie–Tooth, HD Huntington’s disease, MND motor neuron disease, MSA multiple system atrophy, PPS postpolio syndrome, PSP progressive supranuclear palsy

aPatients with a diagnosis of each condition registered on the THIN database on 1 January 2004

Supportive care

Access to supportive care is shown in Table 2. One hundred and eighty-six (70 %) participants had seen a neurologist within the last 12 months. Other commonly accessed services included chiropractor, occupational therapy and physiotherapy. Participants’ experience of supportive care was variable, but generally positive. The number of participants with home adaptations varied; these ranged from bathroom adaptations to handrails. Manual wheelchairs, walking aids and raised toilet seats were commonly used assistive devices. Few participants were currently on a waiting list for adaptations or devices. (Table 2).
Table 2

Supportive care use

Disease (number of patients)

CMT (45)

HD (53)

MND (59)

MSA (17)

PPS (40)

PSP (26)

Ataxias

Access and experience a of health and social care in the last 12 months

Access n (%)

Experience score mean (SD)

Access n (%)

Experience score mean (SD)

Access n (%)

Experience score mean (SD)

Access n (%)

Experience score mean (SD)

Access n (%)

Experience score mean (SD)

Access n (%)

Experience score mean (SD)

Access n (%)

Experience score mean (SD)

 Chiropractor

18 (40)

4.2 (0.8)

17 (32)

4.5 (0.5)

15 (25)

3.5 (1.3)

4 (24)

4.0 (0.0)

16 (40)

4.0 (1.5)

8 (31)

3.6 (1.6)

7 (27)

3.6 (1.4)

 Dentist

31 (69)

4.0 (0.8)

36 (68)

4.0 (1.1)

27 (46)

4.4 (1.1)

9 (53)

4.5 (0.8)

25 (63)

4.2 (1.1)

14 (54)

4.0 (0.9)

11 (42)

4.3 (0.8)

 Dietician

3 (7)

4.3 (0.6)

30 (57)

4.6 (0.5)

22 (37)

4.3 (0.8)

5 (29)

3.6 (0.9)

4 (10)

3.0 (2.3)

8 (31)

4.2 (0.7)

0 (0)

 Genetic counsellor

3 (7)

4.3 (1.2)

10 (19)

4.7 (0.5)

0 (0)

0 (0)

1 (3)

5.0 (0.0)

0 (0)

1 (4)

5.0 (0.0)

 Neurologist

25 (56)

3.8 (1.3)

32 (60)

4.8 (0.5)

52 (88)

4.5 (0.8)

15 (88)

4.1 (1.1)

19 (48)

4.2 (1.3)

21 (81)

3.9 (1.3)

22 (85)

3.9 (1.1)

 Occupational therapist

11 (24)

3.8 (0.8)

17 (32)

4.1 (0.8)

45 (76)

4.4 (0.8)

8 (47)

3.8 (1.3)

14 (35)

3.9 (1.2)

19 (73)

4.1 (1.1)

9 (35)

2.4 (1.7)

 Physiotherapist

17 (38)

3.9 (1.4)

24 (45)

4.3 (0.6)

35 (59)

4.3 (0.8)

9 (53)

3.9 (1.0)

18 (45)

3.8 (1.4)

18 (69)

4.0 (1.2)

8 (31)

4.0 (1.5)

 Social worker

2 (4)

4.5 (0.7)

26 (49)

4.5 (0.6)

17 (29)

3.7 (1.1)

6 (35)

3.0 (1.7)

5 (13)

3.8 (0.8)

9 (35)

3.6 (1.3)

6 (23)

3.4 (1.5)

 Specialist nurse

2 (4)

2.7 (1.5)

16 (30)

4.9 (0.2)

36 (61)

4.6 (0.7)

9 (53)

4.7 (0.5)

1 (3)

5.0 (0.0)

11 (42)

4.4 (0.9)

2 (8)

4.5 (0.7)

 Speech and language therapist

1 (2)

5.0 (0.0)

18 (34)

4.3 (0.7)

31 (53)

4.4 (0.8)

11 (65)

4.0 (0.8)

1 (3)

3.0 (0.0)

20 (77)

3.9 (1.3)

4 (15)

3.7 (1.2)

Which adaptations patients currently have

n (%) current use

n (%) on waiting list

n (%) current use

n (%) on waiting list

n (%) current use

n (%) on waiting list

n (%) current use

n (%) on waiting list

n (%) current use

n (%) on waiting list

n (%) current use

n (%) on waiting list

n (%) current use

n (%) on waiting list

 Bathroom adaptations

13 (29)

1 (2)

31 (58)

2 (4)

33 (56)

2 (3)

6 (35)

1 (6)

21 (53)

2 (5)

15 (58)

0 (0)

13 (50)

2 (8)

 Call alarm system

3 (7)

0 (0)

14 (26)

0 (0)

20 (34)

0 (0)

9 (53)

0 (0)

8 (20)

0 (0)

10 (38)

0 (0)

4 (15)

1 (4)

 Hand rails

14 (31)

0 (0)

25 (47)

0 (0)

31 (53)

1 (2)

12 (71)

0 (0)

16 (40)

0 (0)

17 (65)

3 (12)

20 (77)

2 (8)

 Stair lift

0 (0)

0 (0)

4 (8)

0 (0)

11 (19)

2 (3)

3 (18)

0 (0)

9 (23)

0 (0)

2 (8)

0 (0)

4 (15)

0 (0)

 Wheelchair lift

0 (0)

0 (0)

10 (19)

0 (0)

2 (3)

1 (2)

0 (0)

0 (0)

2 (5)

0 (0)

2 (8)

0 (0)

1 (4)

0 (0)

Assistive devices in current use

 Mobility walking aids

27 (60)

0 (0)

6 (11)

0 (0)

32 (54)

1 (2)

15 (88)

1 (6)

23 (58)

1 (3)

14 (54)

0 (0)

14 (54)

0 (0)

 Bath board

2 (4)

0 (0)

6 (11)

0 (0)

8 (14)

0 (0)

1 (6)

0 (0)

4 (10)

0 (0)

1 (4)

0 (0)

4 (15)

0 (0)

 Low access shower

4 (9)

0 (0)

13 (25)

0 (0)

11 (19)

2 (3)

3 (18)

0 (0)

7 (18)

0 (0)

4 (15)

0 (0)

7 (27)

0 (0)

 Electric wheelchair

1 (2)

0 (0)

1 (2)

0 (0)

15 (25)

0 (0)

5 (29)

0 (0)

13 (33)

0 (0)

1 (4)

0 (0)

5 (19)

0 (0)

 Manual wheelchair

10 (22)

0 (0)

24 (45)

0 (0)

34 (58)

1 (2)

13 (76)

0 (0)

18 (45)

0 (0)

16 (62)

2 (8)

11 (42)

0 (0)

aExperience scale 1 to 5, where 1 = bad, 2 = quite bad, 3 = neither good nor bad, 4 = quite good, 5 = good

Health-related quality of life

The proportion of participants reporting problems in each of the five dimensions of the EQ-5D is shown in Table 3. Most patients with rLTNCs experience difficulty with mobility and usual activities. Many also reported problems with self-care, pain and discomfort and anxiety/depression. Patients with HD reported higher levels of anxiety compared to each of the other conditions (p < 0.05). The significant impact of rLTNC on HRQL compared to patients with other conditions and normative data from the UK general population is shown in Fig. 1. Patients with rLTNCs have substantially reduced HRQL compared to the UK general population. Due to the relatively small sample sizes, the 95 % confidence intervals for the mean values of HRQL are wide. Allowing for this, patients with rLTNC’s experience HRQL comparable to patients hospitalised immediately following a stroke. [11, 12].
Table 3

Patients reporting problems in each EQ-5D dimension

 

Condition

CMT

HD

MND

MSA

PPS

PSP

Ataxias

n

45

53

59

17

40

26

26

EQ-5D dimension

Mobility

 Some problems n (%)

44

(97.78)

44

(83.02)

44

(74.58)

14

(82.35)

34

(85.00)

17

(65.38)

25

(96.15)

 Unable n (%)

0

(0 %)

5

(9.43 %)

12

(20.34 %)

3

(17.65 %)

6

(15.00 %)

8

(30.77 %)

1

(3.85 %)

Self-care

 Some problems n (%)

25

(55.56)

21

(39.62)

26

(44.07)

8

(47.06)

18

(45.00)

13

(50.00)

21

(80.77)

 Unable n (%)

1

(2.22)

21

(39.62)

24

(40.68)

6

(35.29)

3

(7.50)

11

(42.31)

1

(3.85)

Usual activity

 Some problems n (%)

42

(93.33)

26

(49.06)

29

(49.15)

7

(41.18)

29

(72.50)

9

(34.62)

18

(69.23)

 Unable n (%)

3

(6.67)

23

(43.40)

29

(49.15)

9

(52.94)

9

(22.50)

17

(65.38)

8

(30.77)

Pain/discomfort

 Moderate n (%)

29

(64.44)

27

(50.94)

42

(71.19)

9

(52.94)

29

(72.50)

16

(61.54)

15

(57.69)

 Extreme n (%)

12

(26.67)

6

(11.32)

1

(1.69)

3

(17.65)

7

(17.50)

1

(3.85)

4

(15.38)

Anxiety/depression

 Moderate n (%)

21

(46.67)

36

(67.92)

30

(50.85)

8

(47.06)

18

(45.00)

12

(46.15)

15

(57.69)

 Extreme n (%)

1

(2.22)

10

(18.87)

4

(6.78)

2

(11.76)

1

(2.50)

6

(23.08)

7

(26.92)

CMT Charcot–Marie–Tooth, HD Huntington’s disease, MND motor neuron disease, MSA multiple system atrophy, PPS postpolio syndrome, PSP progressive supranuclear palsy, EQ-5D EuroQoL

Fig. 1

Forest plot showing mean EQ-5D index score of rLTNC patients who completed the RESULT survey, compared with patients with other chronic diseases [22, 23] and a sample of the UK population [26]

The relationship between supportive care and HRQL

The proportions of participants receiving these services and resources in relation to patients reporting any problems on EQ-5D dimensions are reported in Table 4. Results suggest that patients have lower access to health and social care services than their needs require. Model results show those with the worst EQ-5D scores and hence worst HRQL accessed support services most frequently (Appendix 2). Increased time since diagnosis was significant in univariate analysis but was no longer significant in the final model.
Table 4

Number of participants reporting any problems in each HRQL dimension receiving HRQL-related services, adaptations, aids or technology

 

Condition

CMT

HD

MND

MSA

PPS

PSP

Ataxias

n (%)

45

53

59

17

40

26

26

Received dimension-related service

 Mobility

26 (59)

34 (69)

49 (88)

12 (71)

21 (84)

17 (100)

14 (54)

 Self-care

9 (35)

19 (45)

45 (90)

9 (64)

11 (52)

19 (79)

10 (45)

 Usual activity

11 (24)

16 (33)

45 (78)

8 (50)

13 (34

9 (73)

9 (35)

 Pain

19 (46)

16 (48)

36 (84)

8 (67)

28 (78)

15 (88)

9 (47)

 Depression

4 (18)

14 (30)

3 (9)

2 (20)

2 (11)

6 (33)

4 (18)

Received dimension-related aids/adaptations/assistive technology

 Mobility

34 (77)

32 (65)

50 (89)

15 (88)

24 (96)

17 (100)

24 (92)

 Self-care

14 (54)

29 (69)

42 (84)

12 (86)

28 (86)

17 (71)

15 (68)

 Usual activity

10 (22)

11 (22)

36 (62)

13 (81)

26 (66)

15 (58)

13 (50)

CMT Charcot–Marie–Tooth, HD Huntington’s disease, MND motor neuron disease, MSA multiple system atrophy, PPS postpolio syndrome, PSP progressive supranuclear palsy

Discussion

This study demonstrates significant reductions in HRQL experienced by people with rLTNCs compared to the general population (Fig. 1). These findings are consistent with earlier studies of some rLTNCs [15, 16, 17, 18] and of more common disorders, for example, Parkinson disease [19, 20]. Although we have not measured disease severity in our study population, participants had longer disease duration than those registered on the THIN database and may, therefore, have more advanced disease and hence more reduction in HRQL.

Given the reported severity of problems, patients with rLTNCs use less health and social care services than their needs require. It is possible that participants choose not to access such services, but a lack of coordination of care or information provision may also be relevant [4, 21]. More than 40 % of patients with PSP, MSA, MND and HD had a healthcare coordinator, whereas less than 20 % of CMT, PPS or ataxia patients had access to a coordinator (Table 1). This study was not powered to look for disease-specific differences, but the access to services does appear higher in the conditions supported by coordinators than those without. A case is made for more systematic examination.

Increased use of services and coordination of care particularly behavioural and therapist interventions, adaptive technologies and rehabilitation programmes may be beneficial in these patients. Exploratory model-based analyses suggest that those accessing the most services have poorer quality of life which likely reflects confounding by indication [22]. Further research into optimisation of care for people with rLTNCs is therefore needed. However, in view of their relative rarity, rLTNC patients may need to be recruited internationally to allow sufficient numbers to be examined in a randomised study. An alternative would be to amalgamate disorders by similarity of symptoms or type of disability, for example, all Parkinson plus disorders examined as one group.

The results of this survey demonstrate that many participants with rLTNCs are cared for by unpaid carers, who may also experience reduced HRQL as a result of caring for someone with rLTNC [5, 23]. Changes to service delivery to improve patient HRQL should also assess the impact on carer well-being.

Limitations

These results taken from a wide-ranging survey estimate the burden of rLTNCs on HRQL. Non-random patient selection was a limitation of this study. Participants were generally older and had longer disease duration than those on the THIN database. The observed HRQL is, therefore, more representative of those with advancing disease. Furthermore, the participants may have been prompted to participate as a result of a lower self-perceived HRQL. It is equally conceivable that those with severe limitations were unable to participate, and as a consequence, only the less limited patients are truly represented in these estimates. Our study has measured HRQL using the EQ-5D to obtain comparable results between disparate disorders. We have not used any disease-specific scales to address specific disability needs for each disorder.

Conclusions

Our research highlights the significant burden of rLTNCs on HRQL. Many patients with these conditions do not use health and social care services that could have a positive impact on their HRQL and may reflect a lack of coordination of care.

Notes

Acknowledgments

The study was part of the RESULT study which was funded by the UK Department of Health Policy Research Programme. The authors thank Ms Helen Duffy for administrative support in preparation of the manuscript.

Conflicts of interest

No conflicts of interest are declared.

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Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  • Melanie Calvert
    • 1
  • Hardev Pall
    • 2
  • Thomas Hoppitt
    • 1
  • Benjamin Eaton
    • 1
  • Edward Savill
    • 1
  • Catherine Sackley
    • 1
  1. 1.School of Health and Population SciencesUniversity of BirminghamBirminghamUK
  2. 2.Clinical and Experimental MedicineUniversity of BirminghamBirminghamUK

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