Unmet care needs of PwMS 775

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European Journal of Public Health, Vol. 25, No. 5, 775–780
 The Author 2015. Published by Oxford University Press on behalf of the European Public Health Association.
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.
org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly
cited. For commercial re-use, please contact journals.permissions@oup.com
doi:10.1093/eurpub/ckv065 Advance Access published on 31 March 2015
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Unmet care needs of people with a neurological
chronic disease: a cross-sectional study in Italy on
Multiple Sclerosis
Michela Ponzio1, Andrea Tacchino1, Paola Zaratin1, Concetta Vaccaro2, Mario Alberto Battaglia3

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1 Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Genoa, Italy
2 Fondazione CENSIS, Rome, Italy
3 Department of Life Science, University of Siena, Siena, Italy

Correspondence: Andrea Tacchino, Scientific Research Area, Italian Multiple Sclerosis Foundation, via Operai 40,
16149 Genoa, Italy. Tel: +39 010 2712812, Fax: +39 010 2713205, e-mail: andrea.tacchino@aism.it

Background: Community-based studies are required to accurately describe the supportive services needed by
people with multiple sclerosis (MS). Methods: A total of 1205 people with MS participated in a cross-sectional
study evaluating their unmet health and social care needs through a questionnaire collecting information used in
the study. It was specifically developed by a multi-disciplinary team. Results: Overall, 79% of the responders
declared at least one health or social care needs. The most prevalent health care need was the psychological
support (27.5%), whereas the transport was the social care need more frequent (over 41%) in our sample. The
multivariate analysis highlighted that unmet health care needs depended mainly on clinical factors such as disease
stage, influenced by disease duration, and disability degree, whereas the social care needs were related to both
clinical and socio-demographic factors. Conclusion: These findings suggest that MS needs significantly change over
time during the disease development and to find the best way to personalize PwMS management is crucial.
Moreover, more public funding directed at improving the health-related quality of life of people with MS is
needed. For this reason, we think that these results will provide important information and baseline data on
how to build the national service strategies thereby making healthcare planning more efficient.
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Background what they perceive as difficulties and needs and, especially, to express
their priorities along with their preferences regarding different forms
ultiple sclerosis (MS), the most common non-traumatic of health and social care.9 Thus, several studies focused their
Mdisease of the central nervous system, is cause of permanent attention in determining the healthcare preferences reported by
disability. MS course is both highly variable and equally unpredict- PwMS. For example, Somerset et al., in a cross-sectional survey in
able in terms of symptoms, signs and the resulting disability degree. the United Kingdom, sent a postal questionnaire comprising socio-
Currently, MS affects around 2.3 million people, with as many as demographic, QoL and depression measures and healthcare original
600 000 in Europe1 and approximately 72 000 in Italy.2 MS effects items. PwMS displayed a wide variation in their preferences for
are wide-ranging, having an impact on physical, psychological and services and unmet needs, ranging from clearer information about
social well-being.3 Furthermore, it is known that psychological, psy- management to relevant tailored advices and accesses to appropri-
chiatric and social issues play a major role in health-related quality ately skilled professionals.10 More recent studies in the United
of life (QoL).4 Thus, it must be recognized that people with MS Kingdom on severe forms expanded these results identifying a lack
(PwMS) are a non-homogeneous population with many difficulties of information about services, aids and adaptations, and a lack of
that varies also according to the lived individual experiences of the continuity and co-ordination of care11 and suggesting to spend more
disease, personal symptoms and disease stages. attention to the emotional support.12 Another study in Germany
In this frame, PwMS show a large number of needs that should be accounted for the need to improve professional–patient relation-
satisfied, even if, due especially to economic, environmental and ships to provide needs-tailored supports.13
organizational causes, they remain frequently unmet. Therefore, to In addition, other studies on MS needs reported a poor diagnosis
date, although the concept of ‘unmet need’ is crucial, it is still management, variations in availability, accessibility and quality of
ambiguous, particularly in managing neurodegenerative pathologies care, high levels of preventable complications.10,14–16 All the results
such as MS. Drennan et al.5 described an unmet need as a complex highlighted the key role of involving PwMS in identifying their pref-
concept with different interpretations depending on the considered erences to better encounter their desires and to adequately tailor the
perspective. For example, clinicians, relying on epidemiological services in accordance with each individual’s necessity.
knowledge during their enquiries on patient’s needs, may find a Few studies were conducted about MS needs in Italy. The most
mismatch between unmet needs identified by themselves and those recent was mainly focused on psychological support and evaluated
actually perceived by the patients.6–8 Therefore, it is important that the different perceptions of PwMS and caregivers about the disease
the investigations are not restricted only to the clinician point of management to gather information to ameliorate patients care. In
view but that PwMS are given the opportunity both to better define particular, it was shown that the majority of participants of both
776 European Journal of Public Health

groups were satisfied with medical staff but expressed a desire that ad-hoc trained personnel conducted the same questionnaire. The
the staff was more forthcoming with information about MS. study was in accordance with the Declaration of Helsinki21 and
Moreover, most patients reported that a multidisciplinary the patient’s informed consent was obtained.
approach was very useful, more than caregivers did. Both groups
required psychological support for patients; however, for the Questionnaire
patients, this was a need greater especially at the time of diagnosis,
whereas for caregivers in post-diagnosis.17 Results confirmed The questionnaire was developed specifically for the study by a
previous findings18 that identified the most important needs for multidisciplinary team of neurologists, psychologists and public
patients and caregivers, particularly underlining a high demand for health experts. Moreover, in designing the questionnaire, the team
more information about MS and psychosocial support (i.e. good was aided by AISM representatives (included PwMS) to take into
relationships with physicians, MS healthcare team, family and account especially the patients point of view about the disease
friends). management. The questionnaire was designed to collect socio-
The main study aim was to identify the most perceived needs demographic status (gender, age, education, employment), clinical
following the PwMS point of view, specifically focusing our status (form, disease duration, disease disability level) and unmet
attention on Italian MS patients. Secondly, with respect to needs. The disease disability level was assessed by a self-Expanded

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previous studies, we took into account a larger and more represen- Disability Status Scale (EDSS) using the items of the original EDSS,
tative sample of PwMS allowing a better evaluation of the factors as suggested in previous epidemiological studies.22 Participants were
associated with the unmet needs. Finally, because MS produces an asked to identify their needs during the last year in a list of 12 yes/no
escalation of physical impairments, socio-economic changes and unmet needs items (table 1).
psychological effects, this study tried to cover multiple aspects
affecting PwMS, identifying and assessing a wider range of needs Data analysis
representative of health and social care requests. In this way, we The frequencies of unmet health and social care needs as well as
wanted not only to provide more information with respect to the demographic and clinical characteristics of the sample were
recent analysis conducted by Lorefice et al.17 but also to propose a reported using descriptive statistics. The unmet needs number
large and necessary updating of the Italian context.19 However, it is reported by participants did not follow a normal distribution and,
fundamental to underline that our study did not want to assess thus, the analysis was conducted using non-parametric test. Factors
whether PwMS actually fail to receive specific services by associated to the unmet needs were identified using a logistic
investigating possible causes such as limited resources or organiza- regression model. The variables introduced into the multivariate
tional incapacities, but it was limited to only understand what PwMS model were selected considering the clinical context. Participants
perceived as their own needs. with missing data for a model variable were excluded from the
analysis involving that variable. However, items without response
were generally minimal (range: 0–2.9%; median: 0.58%). The
Methods results are presented with odds ratios (ORs) and 95% confidence
Sample intervals. Analyses were performed using Stata (version 11.0).

A cross-sectional study on PwMS was carried out in Italy during 2012.

PwMS were identified through MS Clinical Centres, rehabilitation Results
units or among members with MS of Italian MS Society (AISM).
They were invited and recruited from MS Clinical Centres and re- Sample characteristics
habilitation units during clinical visit (consecutive recruitment In total, 1235 Italian PwMS returned the questionnaire or responded
strategy) or from the list of AISM’s members if they previously to the telephone interview; however, only 1205 was finally included:
consented to be contacted by AISM (random recruitment strategy). 30 (2.4%) were excluded due to not sufficiently completed data;
As each source of patients was mainly constituted by a specific target 92.6% of the patients responded directly, while a caregiver on
of MS disease stage, multiple sources of enrolment were necessary. behalf of them responded in 7.4%. The average age was 44.9
The only inclusion criteria was a definite diagnosis of MS.20 (  12.2) years (range: 10–85 years); considering 2 missing data,
Data were collected using a self-administered paper question- 825 (68.6%) patients were females and 378 (31.4%) males (sex
naires or, if required, through a telephone interview during which ratio: 2.2); 89.6% had had at least one stable job, whereas 51.7%

Table 1 Definitions of 12 unmet needs

Health care needs

Psychological support Lack of psychological support when requested by the subject or by a physician
Temporary admission to rehabilitation Lack of rehabilitation facilities to temporary admission
Access to aids Difficulties to access to aids prescribed by the physician (i.e. wheelchairs, canes)
Access to drugs Difficulties to access to drug therapies prescribed by the physician
Nursing home Lack of nursing home (residential or day care centre)
Social care needs
Assistance in transporting Need for personal transport (i.e. accompaniment to the workplace or medical visits); difficulties to access to
public transport (train, plane, bus)
Financial support Lack of financial support
Architectural barriers Difficulties to overcome architectural barriers both in public place and in home
Personal assistance Lack of personal assistance in daily activities (i.e. personal care, domestic help, accompanying children to school)
Managing bureaucracy Difficulties in managing bureaucracy (i.e. request of social security benefits)
Career guidance Lack of vocational guidance or of support as legally protected status
Adaptation workplace Lack of adaptation workplace (excluding architectural barriers)

The list of 12 unmet needs was selected by both previously published data and suggestions of the multidisciplinary team involved in the
study. The questions evaluated two types of needs: five health and seven social care needs.
 Unmet care needs of PwMS 777

Table 2 Factors associated with unmet health care needs for psychological support, temporary admission to rehabilitation, access to aids
and to drugs and nursing home

Variables Psychological Temporary Access to aids, Access to drugs, Nursing home,

support, admission to OR (95% CI) OR (95% CI) OR (95% CI)
OR (95% CI) rehabilitation,
OR (95% CI)

Frequency in the sample, n (%) 331 (27.5%) 118 (9.8%) 81 (6.7%) 65 (5.4%) 38 (3.2%)
Gender Male 1 1 1 1 1
Female 1.24 (0.92–1.68) 0.87 (0.57–1.33) 1.03 (0.61–1.73) 1.22 (0.68–2.17) 0.66 (0.33–1.35)
Age 0.99 (0.97–1.00) 1.00 (0.98–1.02) 0.99 (0.96–1.01) 1.01 (0.98–1.04) 1.01 (0.98–1.05)
Education Primary school 1 1 1 1 1
High school 1.10 (0.75–1.61) 1.18 (0.67–2.06) 0.57 (0.31–1.04) 0.62 (0.33–1.20) 1.94 (0.71–5.31)
University degree 1.09 (0.71–1.68) 1.65 (0.86–3.09) 0.61 (0.28–1.32) 0.64 (0.29–1.38) 2.59 (0.87–7.77)
Employment Unemployed, other 1 1 1 1 1
Currently employed 0.93 (0.70–1.24) 0.82 (0.51––1.30) 0.71 (0.38–1.32) 0.70 (0.38–1.29) 0.63 (0.26–1.53)

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MS form RR 1 1 1 1 1
RP 0.71 (0.39–1.29) 1.40 (0.66–2.97) 1.06 (0.37–3.00) 1.16 (0.42–3.18) 4.63* (1.35–15.9)
SP 1.23 (0.80–1.89) 1.33 (0.73–2.43) 3.54* (1.68–7.44) 1.89 (0.90–3.98) 2.49 (0.83–7.47)
PP 0.88 (0.55–1.42) 1.26 (0.66–2.44) 2.67* (1.21–5.93) 1.30 (0.54––3.10) 2.45 (0.76–7.95)
Disease duration (years) Over 10 years 1 1 1 1 1
2–10 years 1.07 (0.78–1.46) 0.84 (0.53–1.34) 1.45 (0.81–2.58) 0.54* (0.29–0.99) 0.41 (0.16–1.03)
2 years 3.51* (1.83–6.73) 0.30 (0.04–2.29) 1.12 (0.13–9.41) — 1.19 (0.14–10.1)
Disease disability level (EDSS) Mild (0–3) 1 1 1 1 1
Moderate (4–6.5) 1.63* (1.18–2.27) 2.03* (1.15–3.59) 9.40* (2.74–32.24) 1.57(0.80–3.08) 1.15 (0.39–3.35)
Severe (7) 2.01* (1.23–3.28) 3.98* (1.96–8.11) 23.62* (6.29–88.74) 0.80 (0.32–2.01) 2.00 (0.62–6.46)

OR, adjusted odds ratio; CI, confidence interval; RR, relapsing–remitting; PR, progressive–relapsing; SP, secondary progressive; PP, primary
progressive.
*P < 0.05.

were currently employed. The educational level was medium–high: risk of requiring these needs for subjects with higher disability level.
17.8% primary school, 55.3% high school and 27.9% university As expected, the average number of health care needs increased sig-
degree. nificantly with higher disability levels (P = 0.0001).
The main disease course was relapsing–remitting (64.5%), The multivariate analysis showed that almost all the factors, both
whereas 7.2% was progressive relapsing, 16.2% secondary progres- socio-demographic and clinical, were related to unmet social care
sive and 12.1% primary progressive. The average time since needs (table 3). For socio-demographic factors, we observed that
diagnosis was 11.5 (  8.9) years. In particular, 4.5% were newly female showed a higher risk to require needs as transport
diagnosed (2011–12), 53.9% were diagnosed between 2001 and (OR = 1.44) and personal assistance (OR = 2.97); age was related to
2010 and 41.6% before 2001. The distribution of self-EDSS was as managing bureaucracy and career guidance (risk decreased with
follows: 43.5% showed mild disability (EDSS: 0–3), 39.4% moderate increasing age); educational level was related only to financial
(EDSS: 4–6.5) and 17.1% severe (EDSS: 7). support and, in particular, a lower risk was associated only with
university degree (OR = 0.48); currently employed subjects showed a
Unmet needs lower risk to require assistance in transporting (OR = 0.74), financial
support (OR = 0.57), managing bureaucracy (OR = 0.67) and career
Overall, 79% of responders declared at least one health or social care guidance (OR = 0.34) but a higher risk (>6-fold) to require adaptation
need; specifically, 39% (n = 467) reported at least one health care workplace. Considering clinical factors, progressive MS forms were
need, whereas 75% (n = 907) at least one social care needs. associated to higher risk (approximately 2-fold increase) for assistance
Psychological support was the most prevalent health care need in transporting, architectural barriers and personal assistance; newly
with 27.5%, followed by 9.8% of temporary admission to rehabili- diagnosed patients (disease duration  2 years) showed an increased
tation, 6.7% of access to technical aids, 5.4% of access to drugs and, risk for financial support (OR = 2.10), managing bureaucracy
finally, 3.2% of nursing home. (OR = 2.22), career guidance (OR = 2.29), whereas a decrease in archi-
Among social care needs, assistance in transporting was declared tectural barriers was reported by both newly diagnosed and patients
by about 41% of responders, whereas financial support, architecture with 2–10-year disease duration (OR = 0.67 and OR = 0.13, respect-
barriers and personal assistance for over 30%, managing bureaucracy ively). Finally, higher disease disability levels were risk factors for all
for over 20% and, finally, career guidance and adaptation workplace social care needs; we noticed that with increasing disability level an
for over 10%. increase in the mean number of needs occurred (P = 0.0001).

Factors associated with unmet health and social

care needs Discussion
As listed in table 2, health care unmet needs were dependent only on Following previous works adopting a series of in-depth interviews,
clinical factors, whereas socio-demographic aspect did not influence this study explored health and social care unmet needs in the MS
the reported needs. A progressive MS form was associated with population. To provide a representative view of Italian needs, such
access to aids and nursing home (about 3- or 4-fold increase). as in other epidemiological studies,10,15,16,23 a large sample of
Disease duration was associated to psychological support (>3-fold patients with different MS severity levels was enrolled across
increase for newly diagnosed) and access to drugs (about half Italian regions from several sources. We were in line with a
decrease in 2–10-year disease duration). Finally, disease disability disability social model that, respect to the medical model, embeds
level was related to psychological support, temporary admission to clinical care within the social care pathways avoiding to neglect
rehabilitation and access to aids needs, with a significantly increased impaired people by healthcare system.9
778 European Journal of Public Health

Table 3 Factors associated with unmet social care needs for assistance in transporting, financial support, architectural barriers, personal
assistance, managing bureaucracy, career guidance and adaptation workplace

Variables Assistance in Financial Architectural Personal Managing Career Adaptation

transporting, support, barriers, assistance, bureaucracy, guidance, workplace,
OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI)

Frequency in the sample, n (%) 498 (41.3%) 445 (36.9%) 424 (35.2%) 388 (32.2%) 262 (21.7%) 158 (13.1%) 122 (10.1%)
Gender Male 1 1 1 1 1 1 1
Female 1.44* (1.07–1.94) 1.12 (0.85–1.47) 0.94 (0.69–1.28) 2.94* (2.11–4.08) 0.78 (0.57–1.06) 1.02 (0.66–1.56) 1.15 (0.74–1.80)
Age 1.00 (0.99–1.02) 0.99 (0.98–1.00) 1.01 (0.99–1.02) 1.01 (1.00–1.03) 0.98* (0.97–1.00) 0.95* (0.93–0.97) 0.99 (0.97–1.01)
Education Primary school 1 1 1 1 1 1 1
High school 0.78 (0.54–1.13) 0.80 (0.57–1.12) 1.05 (0.71–1.55) 0.69 (0.48–1.01) 0.80 (0.54–1.19) 1.34 (0.77–2.34) 0.84 (0.47–1.51)
University degree 0.85 (0.55–1.30) 0.48* (0.32–0.71) 1.07 (0.68–1.68) 0.66 (0.43–1.02) 0.83 (0.53–1.31) 0.87 (0.45–1.67) 0.62 (0.32–1.22)
Employment Unemployed, other 1 1 1 1 1 1 1
Currently employed 0.74* (0.55–0.98) 0.57* (0.44–0.75) 0.86 (0.63–1.19) 0.95 (0.70–1.30) 0.67* (0.48–0.90) 0.34* (0.23–0.50) 6.61* (3.79–11.5)
MS form RR 1 1 1 1 1 1 1

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RP 1.98* (1.15–3.41) 0.97 (0.58–1.63) 1.61 (0.94–2.77) 2.21* (1.30–3.77) 0.57 (0.28–1.16) 0.33 (0.10–1.12) 0.59 (0.22–1.64)
SP 2.83* (1.84–4.34) 1.09 (0.73–1.64) 2.92* (1.89–4.51) 2.60* (1.70–3.98) 1.23 (0.76–1.96) 1.18 (0.62–2.23) 0.99 (0.49–1.99)
PP 1.82* (1.17–2.85) 1.12 (0.73–1.73) 1.80* (1.14––2.85) 1.99* (1.26–3.15) 1.46 (0.90–2.37) 0.61 (0.27–1.38) 1.30 (0.66–2.55)
Disease duration (years) Over 10 years 1 1 1 1 1 1 1
2–10 years 0.75 (0.55–1.01) 0.93 (0.70–1.25) 0.67* (0.49–0.92) 0.79 (0.57–1.08) 1.26 (0.89–1.78) 1.33 (0.83–2.12) 1.21 (0.76–1.93)
2 years 1.15 (0.56–2.35) 2.10* (1.10–4.03) 0.13* (0.03–0.56) 1.14 (0.54–2.42) 2.22* (1.10–4.48) 2.29* (1.01–5.18) 1.56 (0.58–4.21)
Disease disability level (EDSS) Mild (0–3) 1 1 1 1 1 1 1
Moderate (4–6.5) 3.53* (2.56–4.87) 1.50* (1.11–2.02) 5.52* (3.81–8.00) 2.20* (1.56–3.09) 1.57* (1.10–2.23) 1.60* (1.04–2.48) 1.88* (1.18–2.99)
Severe (7) 6.40* (3.92––10.4) 1.35 (0.86–2.11) 10.2* (6.10–17.1) 4.03* (2.49–6.54) 1.25 (0.73–2.14) 0.68 (0.30–1.55) 2.54* (1.13–5.67)

OR, adjusted odds ratio; CI, confidence interval; RR, relapsing–remitting; PR, progressive relapsing; SP, secondary progressive; PP, primary
progressive.
*P < 0.05.

PwMS, here interviewed, reported several difficulties to access to more impacting role on patients daily life activities, both being
multiple health and social care aspects. In fact, about four-fifths of reported by a major number of interviewed subjects and being
respondents had at least one unmet need: nearly two-fifths reported at depended on all the clinical and socio-demographic factors.
least one health care need, whereas 75% reported at least one social Multivariate analysis on social care needs identified that financial
care need. Overall, unmet needs expressed by our sample validated support, managing bureaucracy and career guidance were more
other studies indicating a broad PwMS need variety, whose the most probably reported by people with lower age, without employment,
relevant were assistance during activities of daily living, psychosocial with a recent diagnosis and with moderate disability level: in these
support, rehabilitation and non-professional care.16,18,24–26 cases the aspects correlated to job and to economic problems are
Here, the multivariate analysis highlighted that unmet health care crucial; in particular, they suggest the necessity to overcome the
needs depended mainly on clinical factors, whereas social care needs difficulty in orienting among social benefits and services, often
were related to both clinical and socio-demographic variables. available but unknown, to better fit into society. These considerations
Among health care needs, psychological support was the most juxtapose and complement previous findings in which PwMS showed
prevalent in our sample and was mainly expressed by patients a significant risk to become unemployed within 5–10 years from the
recently diagnosed and/or with a high disease disability level. In diagnosis, dramatically decreasing productivity and raising MS social
fact, a new diagnosis and disease progression acceptance are two costs.30,31 In a recent Italian study, it was reported that approximately
very demanding challenges for PwMS. This result indirectly shows 30% of the total MS cost was due to productivity losses.32 According to
that living with MS means both awareness to accept illness and its the literature, we observed also a lower significant risk factor for
increasing difficulties and necessity to be continuously supported in financial support when a higher educational level was present.31
reaching this aim. Therefore, healthcare providers should always As expected, also adaptation workplace need was strongly related
take into account this need to prepare patients to accept MS pro- to employment status. In particular, the strong relationship with a
gression and its management.27 However, the most delicate aspect situation of current employment suggests that these services,
that healthcare providers have to face is whether PwMS are ready to although previously discussed and so made known,33 remain still
receive information regarding their diagnosis or their disease pro- greatly inadequate for PwMS that want to maintain their job.
gression. Therefore, in delivering it, psychologists should consider Thus, assistance by counselling services and case managers should
their intervention similarly to a drug treatment with the related side be encouraged by socio-political institutions to cope with MS and
effects. In this light, they are suggested to stipulate and to apply empower individuals in identifying solutions.34
specific guidelines like for evidence-based patient information28 Moreover, assistance in transporting, architectural barriers,
and complex interventions.29 personal assistance and adaptation workplace resulted more
As expected, temporary admission to rehabilitation and access to probable especially for patient’s progressive and with high
aids were principally expressed with progressive disease, as shown by disability level. Therefore, it would indicate that, although in Italy
the correlations with disability level and MS form. Even if this cor- many social measures are present to help PwMS, there is still a lack
relation could seem obvious, instead it underlines that, also in the of adequate services and general assistance especially when a
advanced disease stages, PwMS need to be independent, by looking worsening occurs. In fact, in Italy, like in other European
for maximizing residual functional performances and minimizing countries, the management of everyday daily activities of PwMS at
disability and handicap as long as possible through physical the most advanced disease stages is mainly a private question of the
therapy and use of aids. family that to an informal care often has to add an external paid
Although the analysis on health care needs was actually important assistance, usually totally in their charge.32,35 In addition, it is
to shed new light on what is necessary to be considered in managing important to stress that unmet social care needs expressed by the
MS especially at advanced stages, social care needs seemed to show a most affected patients, as assistance in transporting and architectural
 Unmet care needs of PwMS 779

barriers, seem indirectly describing the request of better social inte-  There is an increasing attention for research advocacy
gration, in line with previous findings showing that MS not only programs aimed to infuse the patient perspective into
influences QoL physical aspects but also personal control and social research, making scientific and medical advices more
activities.26,36 These considerations do not show only that social timely and effective.
measures and services frequently fail to meet PwMS needs but  This cross-sectional study reports the point of view of a large
also that more attention should be attributed also to the carers sample of people with MS about what they perceive should
needs. Therefore, an important necessity arises to teach carers how be the most helpful in meeting their needs.
to cope with their own physical and psychological burden and how  The results show that the 79% of the people with MS in Italy
to better handle any cognitive or behavioural problems that may declares at least one unmet health or social care needs,
occur. stressing that these significantly change over time during
The dissatisfaction revealed through our questionnaire suggests the development of the disease.
that PwMS perception is mandatory to be taken into account by
 These results will provide important information and
MS stakeholders, such as clinicians, healthcare professionals and
baseline data on how to ameliorate or redefine the
health authorities, to make more effective the coordination
national service strategies making healthcare planning
between the available services that may contribute to improve
more efficient.

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PwMS management, to optimize resources allocation and to
reduce economic burden, especially considering the current
European economic and social crises.
References
Strengths and limitations
This study, besides an integration, an updating and a more wide- 1 Atlas of MS 2013. Available at: http://www.msif.org/wp-content/uploads/2014/09/
range overview of health and social care PwMS Italian unmet needs, Atlas-of-MS.pdf (24 March 2015, date last accessed).
could open new perspective in approaching the MS management. 2 Italian MS Society web site. Available at: http://www.aism.it/index.aspx?codpage=
However, it is also important to recognize some limitations of our sclerosi_multipla (24 March 2015, date last accessed).
study. First, the data are derived from a cross-sectional study, so 3 Forbes A, While A, Mathes L, Griffiths P. Health problems and health related quality
causality cannot be definitively determined. Second, all the measures of life in people with multiple sclerosis. Clin Rehabil 2006;20:67–78.
were self-reported and may be subject to several biases. Third, a bias 4 Mitchell AJ, Benito-León J, González JM, Rivera-Navarro J. Quality of life and its
could derive from questionnaires filled out by caregivers. assessment in multiple sclerosis: integrating physical and psychological components
Nevertheless, it is not always possible to directly consult people of wellbeing. Lancet Neurol 2005;4:556–66.
with high disability; however, previous reports showed reasonable 5 Drennan V, Walters K, Lenihan P, et al. SPICE Research Group. Priorities in
validity of informal carers’ contributions.37–39 Finally, the choose of identifying unmet need in older people attending general practice: a nominal group
unmet care needs considered in the questionnaire could not cover all technique study. Fam Pract 2007;24:454–60.
the PwMS needs. 6 Helman CG. Disease versus illness in general practice. J R Coll Gen Pract 1981;31:
548–52.
Conclusion 7 Brassington JC, Marsh NV. Neuropsychological aspects of multiple sclerosis.
Neuropsychol Rev 1998;8:43–77.
PwMS needs significantly change over time during the disease de-
8 McKinley RK, Middleton JF. What do patients want from doctors? Content
velopment, to find the best way to personalize PwMS management
analysis of written patient agendas for the consultation. Br J Gen Pract 1999;49:
becomes a priority.40 Focusing on individual patient needs is a pre- 796–800.
requisite for a patient-centred approach, which also means engaging
9 Oliver M. The politics of disablement. Basingstoke: Macmillan and St Martin’s Press,
patients in healthcare decision making as much as possible.41
1990.
However, an increased involvement involves great challenges to
both PwMS (due to a required major self-responsibility) and 10 Somerset M, Campbell R, Sharp DJ, Peters TJ. What do people with MS want and
expect from health-care services? Health Expectations 2001;4:29–37.
similarly healthcare providers.42
Finally, more public funding directed at improving the health- 11 Edmonds P, Vivat B, Burman R, Silber E, Higginson IJ. ‘Fighting for everything’:
related QoL of PwMS is needed. For this reason, we think that service experiences of people severely affected by multiple sclerosis. Mult Scler 2007;
these results will provide important information and baseline data 13:660–7.
on how to build the national service strategies, thereby making 12 Edmonds P, Vivat B, Burman R, et al. Loss and change: experiences of people
healthcare planning more efficient. severely affected by multiple sclerosis. Palliat Med 2007;21:101–7.
13 Galushko M, Strupp J, Walisko-Waniek J, et al. Validation of the German version of
the Schedule of Attitudes Toward Hastened Death (SAHD-D) with patients in
Acknowledgements palliative care. Palliat Support Care 2014;22:1–11.
The authors thank the people with MS who participated in this study. 14 Freeman JA, Thompson AJ. Community services in multiple sclerosis: still a matter
of chance. J Neurol Neurosurg Psychiatry 2000;69:728–32.
Funding 15 Bates D. Unmet needs for people with multiple sclerosis. Eur Neurol Rev 2008;3:
75–6.
This work was supported by the Italian Multiple Sclerosis 16 Kersten P, McLellan DL, Gross-Paju K, et al. A questionnaire assessment of
Foundation (grant No. 2012/S/5). unmet needs for rehabilitation services and resources for people with multiple
sclerosis: results of a pilot survey in five European countries. Clin Rehabil 2000;14:
Conflicts of interest: None declared.
42–9.
17 Lorefice L, Mura G, Coni G, et al. What do multiple sclerosis patients and their
caregivers perceive as unmet needs? BMC Neurol 2013;13:177.
Key points 18 Koopman W. Needs assessment of persons with multiple sclerosis and significant
 Multiple sclerosis (MS) is a complex condition, which others: using the literature review and focus groups for preliminary survey
requires a careful treatment management and profoundly questionnaire development. Axone 2003;24:10–5.
influences life of people who are affected. 19 Milanese C. Unmet needs in multiple sclerosis: the role of community services.
J Neurol Neurosurg Psychiatry 2000;69:715–6.
780 European Journal of Public Health

20 McDonald WI, Compston A, Edan G, et al. Recommended diagnostic criteria for 32 Ponzio M, Gerzeli S, Brichetto G, et al. Economic impact of multiple sclerosis in
multiple sclerosis: guidelines from the International Panel on the diagnosis of Italy. Focus on rehabilitation costs. Neurol Sci 2015;36:227–34.
multiple sclerosis. Ann Neurol 2001;50:121–7. 33 Messmer Uccelli M, Specchia C, et al. Factors that influence the employment
21 Human Experimentation. Code of Ethics of the World Medical Association status of people with multiple sclerosis: a multi-national study. J Neurol 2009;256:
(Declaration of Helsinki). Can Med Assoc J 1964;91:619. 1989–96.
22 Kobelt G, Berg J, Lindgren P, Jönsson B. Costs and quality of life in multiple 34 Rumrill PD, Roessler RT, McMahon BT, et al. Multiple sclerosis and work place
sclerosis in Europe: method of assessment and analysis. Eur J Health Econ 2006; discrimination: the national EEOC ADA research project. J Vocat Rehabil 2005;23:
7(Suppl 2):S5–13. 179–187.
23 Pugliatti M, Rosati G, Carton H, et al. The epidemiology of multiple sclerosis in 35 Kobelt G, Berg J, Lindgren P, et al. Costs and quality of life of multiple sclerosis in
Europe. Eur J Neurol 2006;13:700–22. Italy. Eur J Health Econ 2006;7:S45–S54.
24 Forbes A, While A, Taylor M. What people with multiple sclerosis perceive to be 36 Roullet E, Sailer M, Swash M, et al. Quality of life in multiple sclerosis in France,
important to meeting their needs. J Adv Nurs 2007;58:11–22. Germany, and the United Kingdom. Cost of Multiple Sclerosis Study Group.
25 MacLurg K, Reilly P, Hawkins S, et al. A primary care-based needs assessment of J Neurol Neurosurg Psychiatry 1998;65:460–66.
people with multiple sclerosis. Br J Gen Pract 2005;55:378–83. 37 Hinton J. How reliable are relatives’ reports of terminal illness? Patients and relatives
26 Somerset M, Sharp D, Campbell R. Multiple sclerosis and quality of life: a compared. Soc Sci Med 1996;43:1229–36.

Downloaded from https://academic.oup.com/eurpub/article/25/5/775/2399098 by guest on 13 November 2024

qualitative investigation. J Health Serv Res Policy 2002;7:151–59. 38 Field D, Douglas C, Jagger C, Dand P. Terminal illness: views of patients and their
27 Solari A. Effective communication at the point of multiple sclerosis diagnosis. lay carers. Palliat Med 1995;9:45–54.
Mult Scler 2014;20:397–402. 39 Philpin SM, Jordan SE, Warring J. Giving people a voice: reflections on conducting
28 Bunge M, Mühlhauser I, Steckelberg A. What constitutes evidence-based interviews with participants experiencing communication impairment. J Adv Nurs
patient information? Overview of discussed criteria. Patient Educ Couns 2010;78: 2005;50:299–306.
316–28. 40 Rieckmann P, Boyko A, Centonze D, et al. Future MS care: a consensus statement of
29 Campbell NC, Murray E, Darbyshire J, et al. Designing and evaluating complex the MS in the 21st Century Steering Group. J Neurol 2013;260:462–9.
interventions to improve health care. Br Med J 2007;334:455–59. 41 Charles C, Gafni A, Whelan T. Shared decision-making in the medical encoun-
30 Simmons RD, Tribe KL, McDonald EA. Living with multiple sclerosis: longitudinal ter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:
changes in employment and the importance of symptom management. J Neurol 681–92.
2010;257:926–36. 42 GMC. Consent: Patients and Doctors Making Decisions Together. London: General
31 Julian LJ, Vella L, Vollmer T, et al. Employment in multiple sclerosis: Exiting and Medical Council, 2008. Available at: http://www.gmc-uk.org/static/documents/
re-entering the work force. J Neurol 2008;255:1354–60. content/Consent_-_English_0911.pdf (November 2014, date last accessed).