DR.

LEIRE AMBROSIO (Orcid ID : 0000-0002-9450-7210)

PROF. MARI CARMEN PORTILLO (Orcid ID : 0000-0002-9450-7210)
Accepted Article
Article type : Original Article

TITLE: Influencing factors when Living with Parkinson’s Disease: A cross-sectional

study.

SHORT TITLE. Living with Parkinson’s Disease

NAME OF AUTHORS

Leire AMBROSIO, RN, MSc, PhD. Faculty of Nursing, University of Navarre. Pamplona,
Navarre, Spain. lambrosio@unav.es

Mari Carmen PORTILLO, RN, MSc, PhD. Faculty of Health Sciences. University of
Southampton. Southampton, UK. M.C.Portillo-Vega@soton.ac.uk

Carmen RODRIGUEZ-BLAZQUEZ, PhD. National Centre of Epidemiology and

CIBERNED, Carlos III Institute of Health. Madrid, Spain. crodb@isciii.es

Jose Manuel ROJO, PhD. Department of Statistics, Center of Human and Social
Sciences, Spanish Council for Scientific Research. Madrid, Spain.
josemanuel.rojo@cchs.csic.es

Pablo MARTINEZ-MARTIN, MD, PhD. National Centre of Epidemiology and

CIBERNED, Carlos III Institute of Health. Madrid, Spain. pmartinez@isciii.es

EC-PC Validation Group: Mayela Rodriguez Violante, Juan Carlos Martinez Castrillo,
Victor Campos Arillo, Nelida Susana Garretto, Tomoko Arakaki, Marcos Serrano Dueñas,
Mario Alvarez.

This article has been accepted for publication and undergone full peer review but has not
been through the copyediting, typesetting, pagination and proofreading process, which
may lead to differences between this version and the Version of Record. Please cite this
article as doi: 10.1111/jocn.14868
This article is protected by copyright. All rights reserved.
 CORRESPONDING AUTHOR. Mari Carmen PORTILLO. Building 67. Highfield
Campus University Road S0171BJ. Southampton, Hampshire, United Kingdom. E-mail:
M.C.Portillo-Vega@soton.ac.uk. Phone number: 44(0)7874047513.
Accepted Article
ACKNOWLEDGMENTS. The authors sincerely thank all the patients for their
participation in this study. The authors also appreciate the support received from the
following centres: Movement Disorders Clinic (Mexico), Ramon y Cajal University
Hospital (Spain), Vithas-Xanit International Hospital (Spain), JM Ramos Mejia Hospital
(Argentina), Neurological Service, Carlos Andrade Marin Hospital (Ecuador), and the
Department of Movement Disorders and Neurodegeneration, CIREN (Cuba).

CONFLICT OF INTEREST STATEMENT. No conflict of interest has been declared

by the authors.

FUNDING STATEMENT. No specific grant from any funding agency in the public,
commercial, or not-for-profit sectors has been received at this stage.

ABSTRACT

Aims and objectives: To identify the personal and disease related factors that are
associated to Living with Parkinson’s disease.

Background: Living with Parkinson’s disease affects the physical, psychological, social
and spiritual areas of the person. Health professionals need to know which factors
influence the daily Living with Parkinson’s disease, in order to facilitate a positive living.

Design: A multicentre cross-sectional study.

Methods: 324 patients with a Parkinson’s disease diagnoses were included in the study
through a consecutive cases sampling. Data were collected from January to June 2015, in
specialized units of movement disorders of public and private and community centres,

This article is protected by copyright. All rights reserved.

 from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to
evaluate personal related factors (age, gender, psychosocial function, satisfaction with life,
social support, home economical situation) and Parkinson’s disease related factors
Accepted Article
(duration of disease, motor symptoms, non-motor symptoms). The STROBE checklist was
used to ensure quality reporting during the study (see Supplementary File 1). Multiple
linear regression analysis was carried out.

Results: Results indicated that social support, followed by satisfaction with life and home
economical situation are the only three factors that significantly influence in Living with
Parkinson’s disease. The rest of the factors analysed did not present significant influence
in the daily Living with this neurodegenerative disease.

Conclusion: This study highlights the necessity to put more emphasis on the person and
his/her daily Living with the condition and less on symptoms and treatment. Health
professionals need to develop person centred interventions that also deal with other
elements of the experience of living with a long-term condition like Parkinson’s disease.

Relevance to clinical practice: Interventions to foster positive living with Parkinson’s

disease in clinical practice should integrate strategies to tackle and prevent loneliness and
interagency elements to increase community resources and systems of support.

Keywords: Cross-sectional study, Influencing factors, Social support, Satisfaction with

life, Long-term condition, Parkinson’s disease.

INTRODUCTION

Demographic changes happening in the 20th century in the Western world such as ageing
and the increase in life expectancy have produced a significant growth in long-term
conditions (LTCs) in the contemporary society. In particular, LTCs have become a leading
health related issue (WHO, 2017). Among LTCs, neurodegenerative and progressive
disorders like Parkinson’s disease (PD) stand out. PD is the second most common
neurodegenerative disease, after Alzheimer’ disease, affecting 1% of all people over 60
years of age in industrialized countries (de Lau and Breteler, 2006). PD prevalence is
increasing and it is expected that the number of people with PD will double by 2030

This article is protected by copyright. All rights reserved.

 (Dorsey et al. 2007). At present, there is no cure for PD and is a major and increasing
burden on patients, families, carers and healthcare systems (Findley, 2007). Medical costs
for people with PD are twice those of people without PD. More concretely, the annual
Accepted Article
costs per patient and per year ranged around $1750 in Canada, $17,560 in Germany or
£5,993 in UK (Findley, 2007). Taking into account these numbers, it is clear that
management strategies that minimise the impact of disease progression and maximise the
daily living are needed to ensure optimal resource utilization and reduce expenses in
healthcare systems.

BACKGROUND
PD is a complex and disabling disorder manifested through a combination of specific
motor and non-motor symptoms that generate an important psychological and social
impact on the person who suffers the disease (Kalia and Lang, 2015, Lees et al. 2009,
Poewe et al. 2017). A recent study of PD patients showed a high proportion of patients
reporting non-motor symptoms such as hallucinations, depression or cognitive decline,
affecting negatively in their daily living with the disease (Findley, 2007). In this way,
throughout the PD course, patients do not only experience a progressive intensification of
PD specific symptoms but also have to cope and deal with an increasing limitation in all
areas of their daily Living with PD as a consequence of the disease (Haahr et al. 2011,
Hermanns, 2011).
Living with a LTC like PD has been recently defined as a complex, dynamic, cyclic and
multidimensional process that involves key elements, as acceptance, coping or adjustment
(REFERENCE BLINDED FOR PEER REVIEW). Living with PD affects the patients’
physical state together with other essential aspects in his/her life, such as the
psychological, social and spiritual ones (Kang and Ellis-Hill, 2015, Navarta-Sanchez et al.
2017).
In this context, healthcare professionals and especially nurses need to be aware and adopt
a comprehensive approach so that all aspects of the patients, understood as a bio-psycho-
social and spiritual being, are individually addressed (Fix et al. 2018, WHO, 2018).
Nurses play an essential role and need to reconsider daily practice to focus on the person
and not just on the disease, symptoms and treatment. Hence, identifying and
understanding which factors could affect the person’s living experience with PD is
necessary to provide care according to the patient individual and unique needs
(REFERENCE BLINDED FOR PEER REVIEW, Lees et al. 2009, REFERENCE

This article is protected by copyright. All rights reserved.

 BLINDED FOR PEER REVIEW). Consequently, nurses could develop individualised
plans and/or targeted interventions improving the experience of the person with PD.
At present, several studies have been identified in the literature (Kang and Ellis-Hill, 2015,
Accepted Article
Prizer and Browner, 2012, Soundy et al. 2014), which address the patients’ experience and
perceptions when living with PD. There is also evidence (Hurt et al. 2012, McLaughlin et
al. 2010, Navarta-Sanchez et al. 2017) showing the factors (i.e. family support, resources
or personal aspects) influencing the psychosocial adjustment or coping with PD. Despite
the relevance of these papers, it is important to point out that they all focussed on a single
element of the whole process of Living with PD, having a fragmented view of the daily
living with a disease. In this sense, despite the existing literature, at present the predictors
of the Living with PD and how they interact with each other remain unknown. Therefore,
the aim of this study is to identify the personal and PD related factors that are associated to
Living with PD.

METHODS

Hypotheses
Based on previous research (Kang and Ellis-Hill, 2015, Zaragoza et al. 2014), we
hypothesized that highly perceived levels of social support of the patient are related to a
positive Living with PD (H1); more satisfaction with life is related to a positive living
with PD (H2); a better home economical situation is related to positive Living with PD
(H3); being at an initial or less severe stage of PD is related to a positive Living with the
condition (H4); and less burden of PD motor and non-motor symptoms is related to a more
positive Living with PD (H5).

Study design
This was an international study with an observational and cross-sectional design which
took place in five countries (Spain, Argentina, Ecuador, Mexico, Cuba). This research was
part of a multidisciplinary research programme called XXX (REFERENCE BLINDED
FOR PEER REVIEW), whose general purpose is to design individualized interventions to
normalise the experience of living with LTCs for patients and family/carers through the
development, implementation and evaluation of individualised multiagency interventions.

This article is protected by copyright. All rights reserved.

 STROBE checklist for cross-sectional studies was used to ensure quality of this study (see
Supplementary File 1).
Accepted Article
Participants and setting
Participants (people with PD) were recruited in seven specialized outpatients consultations
of movement disorders of the 5 participating countries: Argentina, Ecuador, Cuba, Mexico
and Spain from January to June 2015.
A consecutive cases sampling took place and the following inclusion and exclusion
criteria were applied during the recruitment. Inclusion criteria: 1) being diagnosed with
PD by a neurologist according to international recognized diagnostic criteria (Lees et al.
2009); 2) being native Spanish-speaking patients; 3) being able to read and understand the
questionnaire; and 4) providing an informed consent. Exclusion criteria: 1) having other
type of parkinsonism different to PD; 2) having other concomitant severe systemic
condition; 3) presenting cognitive deterioration (diagnosed by the neurologist); 4) having
other acute disorders or injuries due to pharmacological effect (e.g., dopamine
antagonists), or sensorial deficit (e.g., blindness) potentially distorting the assessment; and
5) refusing to participate or not meeting all inclusion criteria.

Assessments
Socio-demographic data (age, gender, marital status, employment situation and
educational level) and PD historic data (age at PD onset, PD duration and PD treatment
duration) were collected. In addition, nine measures were applied. All of them had been
validated to Spanish, presented adequate reliability and validity values, and were open
access or authors had the licence/permission to use them. The applied measures were the
following:

Rater-based assessments
The Hoehn and Yahr stage (HY) was used to evaluate the overall severity of the disease.
This scale classifies the severity of PD into five stages from 1 (without functional issue) to
5 (wheelchair bound or bedridden unless aided) (Hoehn and Yahr, 1967).
The Clinical Impression of Severity Index-PD (CISI-PD) was used to evaluate the global
impression of PD severity in four areas: motor signs, disability, motor complications and
cognitive status. Each item is rated on a range of 0 (normal, no affectation) to 6 (very

This article is protected by copyright. All rights reserved.

 severe affectation). The total score ranges from 0 to 24 (Martinez-Martin et al. 2006,
Martinez-Martin et al. 2009a).
The Scales for Outcomes in Parkinson’s Disease-Motor (SCOPA-Motor) was used to
Accepted Article
measure patients’ motor symptoms generated by PD. It is a 21 item scale grouped into
three sections: examination, activities of daily living, and motor complications. The score
for each item varies from 0 (normal, no affectation) to 3 (severe affectation) and the total
scale score ranges from 0-75 (Marinus et al. 2004, Martinez-Martin et al. 2005).
The Non-Motor Symptoms Scale (NMSS) was used to evaluate the burden of non-motor
symptoms in PD. It is a 30-item scale, with nine domains: cardiovascular, sleep/fatigue,
perceptual problems/hallucinations, attention/memory, gastrointestinal tract, urinary,
sexual function and miscellaneous. The score for each item varies from 0 (no presence of
symptom) to 12 (maximum frequency and severity of symptom). The total score for the
domains and the whole scale can be obtained by the sum of the corresponding items scores
(Chaudhuri et al. 2007, Martinez-Martin et al. 2009b).

Patient-reported assessments
The SCOPA-PS was used to evaluate the psychosocial functioning of the patient during
the preceding month. It is a self-reported 11-item questionnaire where each item is scored
from 0 (not psychosocial problems at all) to 3 (maximum level of problems). The
summary index is obtained by summing up direct item scores transformed into percentage
values (Marinus et al. 2003, Martinez-Martin et al. 2009c).

The Duke-UNC Functional Social Support Questionnaire (DUFSS) was used to evaluate
the social support of the patients’ from his/her perspective. The DUFSS is a self-reported
measure that comprises 11 items that evaluate diverse dimensions of social support as
confidant, affective and instrumental support. The score for each item varies from 1 (much
less than I would like) to 5 (as much as I would like). Total score ranges from 11 (lowest
level of support ‘much less than I would like’) to 55 (highest level of support ‘as much as I
like’) (Ayala et al. 2012, Broadhead et al. 1988).

The Satisfaction with Life Scale (SLS) is a 7-item self-reported questionnaire. For this
study, a modified version of the SLS was used because the original version was specific
for a student population. In this way, a modified version with 6-item scale (SLS-6) was
used to evaluate the degree of overall satisfaction with life (item 1) and regarding five

This article is protected by copyright. All rights reserved.

 areas: physical, psychological wellbeing, social relations, leisure, and financial situation.
Each item rated on a 0 (totally unsatisfied with life) to 10 (totally satisfied with life) point
Likert scale (REFERENCE BLINDED FOR PEER REVIEW, Mazaheri and Theuns,
Accepted Article
2006).
The self-rated home economical situation (SEH) is a generic and analogical visual
measure with 10 tracts, scored from 0 (very poor home) to 10 (very rich home).
Finally, the Living with Chronic Illness Scale (EC-PC) is a new scale to evaluate the
process of Living with a LTC, as PD. The EC-PC is a 26-item scale with five domains: 1-
Acceptance (4 items); 2-Coping (7 items); 3-Self-management (4 items); 4-Integration (5
items); and 5-Adjustment (6 items). Items are scored on a 5-point scale ranging from 0
(never/nothing) to 4 (always/a lot), except for domain 1-Acceptance that ranges upside
down (4: never/nothing; 0: always/a lot). Total score ranges from 0 (negative Living with
PD) to 104 (positive Living with PD). The psychometric properties of this scale have been
published elsewhere (REFERENCE BLINDED FOR PEER REVIEW).

Data collection
All measures were completed during the consultation with the neurologist, from January
to June 2015. The neurologist completed the rater-based assessments and in addition, the
participants filled in the patient-reported assessments. In order to ensure homogeneity in
all the participating countries and reduce possible errors during data collection, the
principal investigator of the project developed a data collection protocol with the
following steps: presentation of information about the research programme and in
particular this study; clarification of doubts; reading out load instructions measuring scales
completed with the neurologist and their items and answers, selecting the answer chosen
by the patient; reading out load instructions of the self-reported scales and giving
participants time to complete them. The average time to complete the self-reported scales
was 45 minutes.

Ethical considerations
The study was approved by the Institutional Review Board of the XXX and the other
participating countries (IRB No.: 071/2014). Patients gave their consent to participate
voluntarily after receiving the pertinent oral and written information. All data and
information about the participants’ identity were handled in full confidentiality throughout
the research process. No ethical conflicts emerged.

This article is protected by copyright. All rights reserved.

 Data analysis
Data were analysed using Stata 14 (StataCorp, College Station, Texas 77845 USA).
Descriptive statistics (central tendency measures, proportions) were used to determine the
Accepted Article
socio-demographic and disease related factors of the participants. Besides, Spearman rank
correlation coefficient (rs) was used for testing the associations between the EC-PC and
the rest of assessments. Spearman rank correlation coefficient was used because the origin
of the main data was ordinal and because the distribution of scores from the main
variables was not normal. The criterion values were: negligible/weak rs < 0.35, moderate rs
= 0.35 - 0.50 and strong rs > 0.50 (Juniper et al. 1996).
To identify the factors that could influence Living with PD multiple linear regression
models were used for the EC-PC total and the domain related scores. Before, assumptions
of normality, homoscedasticity, independence of errors and absence of multicollinearity
were checked and, subsequently, some variables were discarded (HY, CISI-PD, SCOPA-
Motor Examination, SCOPA-PS). Six regression models were built. The respective
dependent variables were EC-PC total score and the five domains. The independent
(explanatory) variables for all models were: age, gender, duration of studies, duration of
PD, ability for activities of daily living and motor complications (SCOPA-Motor), non-
motor symptoms burden (NMSS), satisfaction with life (SLS-6), social support perceived
by the patient (DUFSS) and, home economical situation (SEH).
The method of entry of variables was simultaneous to check the effect of each explanatory
variable in each model in order to make these effects comparable, taking into account that
multicollinearity was previously discarded.
A p-value of 0.05 or lower was considered statistically significant.

Rigour
To ensure the rigour of the study, we administered instruments validated in a Spanish
population with excellent psychometric properties. In particular, the EC-PC is a reliable
instrument with satisfactory Cronbach’s alpha (α ≥0.70) in patients living with PD.
Besides, validity showed satisfactory in convergent, internal and known-groups validity
coefficients (REFERENCE BLINDED FOR PEER REVIEW). In addition, Guba and
Lincoln (1981) criteria of trustworthiness were used to ensure rigour in quantitative
research. To ensure truth-value patient-reported assessments were included and a
standardized protocol was used in all participating centres. The data of this study emerged
form the validation study of the EC-PC (REFERENCE BLINDED FOR PEER REVIEW).

This article is protected by copyright. All rights reserved.

 The characteristics of the sample can be considered representative of the PD population
attended in specialized movement disorder units (male predominance, advanced age,
middle PD duration and all HY stages). Also, the study was carried out in five different
Accepted Article
Spanish spoken countries in order to ensure the applicability of the results in this
population. A minimum of 50 patients per centre was requested, considering that basic
psychometric attributes of the EC-PC could be tested on this sample size, if it was
convenient (Terwee et al. 2007). Consistency was fulfilled including researchers with high
expertise in measures related to PD and in the phenomenon of Living with LTCs. Also,
rigour was ensured developing a structured protocol for all the researchers in order to
standardized the study. Neutrality was promoted following a systematic methodology and
including external experts from XXX research group (REFERENCE BLINDED FOR
PEER REVIEW).

RESULTS
A total of 324 patients with PD were included. Socio-demographic and PD related
characteristics of the sample are shown in Table 1. Most of patients in the sample were
married, retired and had primary or secondary education level. Most of patients (85.8%)
were in intermediate HY stages (55.25% stage 2; 30.56% stage 3), although all stages
were represented. There were no missing data and the average scores of included measures
were, overall, at indicative levels of moderate to mild of their respective constructs. Part of
the descriptive statistics for PD related variables and assessments in the study, and for the
EC-PC were mentioned in a previous manuscript (REFERENCE BLINDED FOR PEER
REVIEW) (Tables 2 and 3).
According to the correlation coefficient values, DUFSS showed strong association (rS =
0.61) with EC-PC total score. A moderate correlation was identified between EC-PC and
SLS-6 (rS = 0.46). Moderate correlations (rs = 0.32-0.48) were also identified between EC-
PC domains and the other assessments: NMSS with domain 1-Acceptance; SCOPA-PS
with domain 1-Acceptance; DUFSS with domain 5-Adjustment; and SLS-6 with domain
1-Acceptance, 4-Integration, and 5-Adjustment. All these correlations were significant (p
< 0.001). Weak or negligible correlations were found between EC-PC and the clinician-
based PD assessments (Table 3).

This article is protected by copyright. All rights reserved.

 Table 4 shows the results from the multiple linear regression analysis. In addition, the
analysis of the residuals concluded that a normal distribution could not be discarded and
there was no heteroscedasticity. Social support (DUFSS), satisfaction with life (SLS-6)
Accepted Article
and home economical situation (SEH) showed a significant and independent influence on
the process of Living with PD (EC-PC). According to the standardized coefficients, the
variable showing the greatest effect was DUFSS (beta = 0.51), followed by SLS-6 (beta =
0.26) and SEH (beta = -0.16). Additionally, these three measures (DUFSS, SLS-6, SEH)
also presented independent and selective association with different domains of the EC-PC:
DUFSS presents significant association with domains 2-Coping, 3-Self-Management, 4-
Integration and 5-Adjustment, while domain 1-Acceptance showed strong association with
SLS-6, but not with DUFSS or SEH. Years of education and motor symptoms (SCOPA-
M) did not present a significant effect in the analysed models. The rest of the measures
included in the study showed a p value > 0.05.

DISCUSSION
Results in this study could establish some basic notions for a more comprehensive
approach of PD management, showing key factors that influence the experience of Living
with PD and including a specific measure in this regard (EC-PC). To our knowledge, this
is the first study that analyses and reports on the factors that influence in Living with a
LTC, in particular with PD.
One of the key results in this study showed a clear positive association between patients’
social support perception and Living with PD. Furthermore, our subsequent multiple linear
regression analysis confirmed this influence and we can state that social support is the
most influencing factor of Living with PD confirming hypothesis 1 of this study.
The identification of social support as a star factor when it comes to PD is not new in the
literature and from a qualitative and quantitative perspective this has been intuited before
(Dunk et al. 2017, Kang and Ellis-Hill, 2015) with a special focus on the support given by
nurses (Kang and Ellis-Hill, 2015, Wang et al. 2014). However, our results are novel as
this association has never been determined with Living with PD from a quantitative
perspective. Living with a LTC as a phenomenon bears complexity and should not be
simplified to processes like self-management or acceptance of the diagnosis, which are
inner parts of the former (REFERENCE BLINDED FOR PEER REVIEW). This is
illustrated in the other associations presented in table 4 as all domains but Acceptance
were clearly influenced by the perceived social support and non-motor symptoms

This article is protected by copyright. All rights reserved.

 influenced significantly the level of acceptance of the condition. This indicates that
establishing strong and positive personal networks for social support could facilitate
positive living with PD in terms of illness work, adjustment, emotional support and
Accepted Article
feelings of burden (Kennedy et al. 2015, Koetsenruijter et al. 2015, Vassilev et al. 2016).
Further research could look at the effectiveness of these strategies for people with PD and
also family-carers and also explore other possibilities of social support that are beyond the
family itself, fostering a conceptual change to understand families not only as providers
but also recipients of such support.
Satisfaction with life was the second most important influencing factor (after social
support) in Living with PD. In this way, hypothesis 2 of this study was confirmed and
evidence in this field was corroborated. A previous study carried out in a PD population
(Gustafsson et al. 2015) showed a possible correlation between low levels or lack of
satisfaction with life and increased depression feelings with a special interest in the
influence of unemployment in the levels of satisfaction in people with PD. However, as
mentioned before ours is the first study that confirmed statistically this direct and
significant influence in patients’ daily Living with PD as a whole. The direct association
with specific domains of Living with PD only showed significance for Acceptance,
Integration and Adjustment. These results although logical should not be overlooked as
they have clear implications for the unfounded direction of care pathways and priorities
for PD management nowadays, which need to include personal based aspects as
underpinning elements for quality of care and more essentially satisfaction with life as
final patients’ outcomes.
Surprisingly, the moderate relationship between home economical situation and Living
with PD does not confirm our hypothesis 3. Results showed that a better home economical
situation is related to a negative Living with PD. This result was unexpected and there are
not previous papers that could explain it. The correlation of EC-PC with the SHE can be
loose, a tangible fact which depends on many factors. However, the economical situation
at home can be a factor influencing the life with a disease. Due to this reason, the SHE
was included in the regression models despite its trivial correlation with the dependent
variable, and it appeared as a significant, although weak predictor. Same association was
found between the home economic situation and the coping and self-management domains
of Living with PD. This demonstrates that access to material resources does not ensure a
better experience of living with a neurodegenerative condition like PD. A proposed
explanation of this result is that people with a medium-high home economical status could

This article is protected by copyright. All rights reserved.

 have higher life expectations and therefore, considered Living with PD more detrimental.
Thereby, those people with a lower home economic status may be more prone to finding
benefits in the condition and valuing other aspects in their daily living (Mavandadi et al.
Accepted Article
2014, Zaragoza et al. 2014). Furthermore, we did not find any relationships of the home
economic situation and any of the other independent variables in this study that could
clarify this further. Therefore, more research is needed in this regard looking at other
potential influential relationships between the socioeconomic status and other variables
like the sense of coherence people living with PD have (Antonovski, 1987), which could
contribute to understanding how people find meaning in living with PD and make sense of
or challenge their resources, identities, skills and feelings of satisfaction towards a more
positive adjustment.
Finally, another key result of this study is that Living with PD is not influenced by disease
related factors. That means that PD duration, stage of PD and motor symptoms have a
negligible or a weak impact on the daily Living with PD. In this way, established
hypotheses for this study (H4-H5) were not confirmed. The only domain that was
influenced by the non-motor symptoms was acceptance and this could support the need to
work on acceptance at the initial stages of the diagnosis when patients could also learn
how to manage symptoms. Nevertheless, at other stages of PD symptoms do not have a
key role as demonstrated in this study. Our result questions the orientation of self-
management programmes for PD, PD clinical guidelines, care pathways and the
professional approach of the condition, which unfortunately, keep focusing on the
management of the symptoms (https://www.nice.org.uk/guidance/conditions-and-
diseases/neurological-conditions/parkinson-s-disease#evidence-summaries). PD motor and
non-motor symptoms are important but show a partial picture of the daily experience with
PD and the increase of systems of support for the patient and the family could result in
better management and ultimately, quality of life.

Limitations
Due to the cross-sectional design and the specific cultural context of the study population
the results must be interpreted with caution. However, an important strength is that
Spanish speaking-population is the second most spoken language in the world, after
Chinese, with 399 million of speakers (Ethnologue, 2015). Therefore, the inclusion of
patients from five different countries supports the consistency of the results at least for this
cultural and linguistic setting. Besides, the patients included in the study were also

This article is protected by copyright. All rights reserved.

 considered representative of the PD population attending movement disorder units, with
over 85% of patients in mild or moderate levels of severity. A low percentage of patients
with a higher level of severity were included in the study because frequently PD patients
Accepted Article
with higher levels present cognitive deterioration that was an exclusion criterion.

CONCLUSIONS
The results in this study illustrate the need to place the emphasis on the person and in
his/her daily living with the disease, and not just on the disease. Each person with a LTC,
as PD, must be seen as a unique and unrepeatable person, independently of the stage or the
severity of the disease. Therefore, it is necessary to incorporate multidisciplinary and
individualized interventions in nowadays health services, focusing on the factors that
directly influence in Living with PD, as for social support, satisfaction and economic
status. Consequently, possible negative aspects of the daily Living with PD as lack of
support, loneliness or dissatisfaction with life could be prevented and a more positive
living achieved. So, this study advocates the necessity to put the comprehensive needs of
people and communities, at the centre of health systems, empowering people to have a
positive living and active role in their own health. Future research in other settings and
countries is needed to confirm the generalizability of these findings. Besides, person
centre interventions or individualized healthcare plans could be implemented in clinical
practice, incorporating non-pharmacological or PD specific measures that address the
factor(s) that are paramount in the daily Living with a LTC. In this regard, PD
programmes that mobilise and optimize the use of community resources, increase personal
networks and social support seem to be the direction for the management of
neurodegenerative conditions.

RELEVANCE TO PRACTICE
Elements related to the perceived social support of the person with Parkinson’s disease
and satisfaction with life play a key role in the living with a LTC like PD. Besides, Living
with PD is not influenced by disease related factors, namely duration, stage, or specific
motor symptoms. Consequently, research based interventions operationalised in clinical
practice require a change of direction to tackle and prevent loneliness and include
interagency elements. This could lead to finding community resources and systems of
support, which could sustain management programmes for neurodegenerative conditions
in nowadays healthcare systems.

This article is protected by copyright. All rights reserved.

 REFERENCES

Antonovsky, A. (1987). Unravelling the mystery of health: how people manage stress and
Accepted Article
stay well. San Francisco: Jossey Bass Publishers.
Ayala, A., Rodríguez-Blázquez, C., Frades-Payo, B., Forjaz, M.J., Martínez-Martín, P.,
Fernández-Mayoralas, G., … Rojo-Pérez, F. (2012). Propiedades psicométricas del
Cuestionario de Apoyo Social Funcional y de la Escala de Soledad en adultos mayores no
institucionalizados en España. Gaceta Sanitaria, 26(4), 317-324.
Broadhead, W.E., Gehlbach, S.H., de Gruy, F.V., Kaplan, B.H. (1988). The Duke-UNC
Functional Social Support Questionnaire, Measurement of social support in family
medicine patients. Medical Care, 26(7), 709-723.
Chaudhuri, K.R., Martinez-Martin, P., Brown, R.G., Sethi, K., Stocchi, F., Odin, P., …
Schapira, A.H. (2007). The metric properties of a novel non-motor symptoms scale for
Parkinson’s disease: results from an international pilot study. Movement Disorders,
22(13), 1901-1911.
de Lau, L.M., & Breteler, M.M. (2006). Epidemiology of Parkinson’s disease. The Lancet
Neurology, 5(6), 525-535.
Dorsey, E.R., Constantinescu, R., Thompson, J.P., Biglan, K.M., Holloway, R.G.,
Kieburtz, K., … Tanner, C.M. (2007). Projected number of people with Parkinson disease
in the most populous nations, 2005 through 2030. Neurology, 68(5), 384-386.
Dunk, M., Engblom, H., Gissen, M., Joseph, E., Po-Fai Li, J., Russell, D.W., … McRae,
C. (2017). Social Support and Loneliness Among Parkinson Care Partners. Medical
Research Archives, 5(8), 1-14.
Ethnologue (2015). Languages of the world. Summary by the language size. Available in:
http://www.ethnologue.com/statistics/size.
Findley, L.J. (2007). The economic impact of Parkinson’s disease. Parkinsonism &
Related Disorders, 13, S8-S12.
Fix, G.M., Lukas, C.V., Bolton, R.E., Hill, J.N., Mueller, N., LaVela, S.L., & Bokhour,
B.G., (2018). Patient-centred care is a way of doing things: how healthcare employees
conceptualize patient-centred care. Health Expectations, 21(1), 300-307.
Gustafsson, H., Nordström, A., Strahle, S., & Nordström, P. (2015). Parkinson’s Disease:
A population-based investigation of life satisfaction and employment. Journal of
Rehabilitation Medicine, 47(1), 45-51.

This article is protected by copyright. All rights reserved.

 Haahr, A., Kirkevold, M., Hall, E.O., & Ostergaard, K. (2011). Living with advanced
Parkinson’s disease: a constant struggle with unpredictability. Journal of Advanced
Nursing, 67(2), 408-417.
Accepted Article
Hermanns, M. (2011). Weathering the storm: living with Parkinson’s disease. Journal of
Christian Nursing, 28(2), 76-82.
Hoehn, M.M., & Yahr, M.D. (1967). Parkinsonism: Onset, progression and mortality.
Neurology, 17(5), 427-442.
Hurt, C. S., Landau, S., Burn, D. J., Hindle, J. V., Samuel, M., Wilson, K., … PROMS-PD
Study Group (2012). Cognition, coping and outcome in Parkinson’s disease. International
Psychogeriatrics, 24(10), 1656–1663.
Juniper, E.F., Guyatt, G.H., & Jaeschke, R. (1996). How to develop and validate a new
health-related quality of life instrument. In B. Spilker (Ed.), Quality of life and
pharmacoeconomics in clinical trials (pp. 49-56). Philadelphia: Lippincott-Raven
Publishers.
Kalia, L.K. & Lang, A.E. (2015). Parkinson’s disease. The Lancet, 286, 896-912.
Kang, M., & Ellis-Hill, C. (2015). How do people live life successfully with Parkinson’s
disease? Journal of Clinical Nursing, 24(15-16), 2314–2322.
Kennedy, A., Rogers, A., Vassilev, I., Todorova, E., Roukova, P., Foss, C., … Wensing,
M. (2015). Dynamics and nature of support in the personal networks of people with type 2
diabetes living in Europe: qualitative analysis of network properties. Health Expectations,
18(6), 3172-3185.
Koetsenruijter, J., van Lieshout, J., Lionis, C., Portillo, M.C., Vassilev, I., & Todorova, E.
(2015). Social support and health in diabetes patients: an observational study in six
European countries in an Era of Austerity. PLoS One, 10(8), e0135079.
Lees, A.J., Hardy, J., & Revesz, T. (2009). Parkinson’s disease. The Lancet, 373(9680),
2055-2066.
Marinus, J., Visser, M., Martinez-Martin, P., Van Hilten, J.J., & Stiggelbout, A.M. (2003).
A short psychosocial questionnaire for patients with Parkinson’s disease: the SCOPA-PS.
Journal of Clinical Epidemiology, 56(1), 61-67.
Marinus, J., Visser, M., Stiggelbout, A.M., Rabey, J.M., Martinez-Martin, P., Bonuccelli,
U., … van Hilten, J.J. (2004). A short scale for the assessment of motor impairments and
disabilities in Parkinson’s disease: the SPES/SCOPA. Journal of Neurology,
Neurosurgery, and Psychiatry, 75(3), 388-95.

This article is protected by copyright. All rights reserved.

 Martinez-Martin, P., Benito-Leon, J., Burguera, J.A., Castro, A., Linazasoro, G.,
Martinez-Castrillo, J.C., … Frades, B. (2005). The SCOPA-Motor Scale for assessment of
Parkinson’s disease is a consistent and valid measure. Journal of Clinical Epidemiology,
Accepted Article
58(7), 674-679.
Martinez-Martin, P., Forjaz, M.J., Cubo, E., Frades, B., de Pedro Cuesta, J., & ELEP
Project Members, (2006). Global versus factor-related impression of severity in
Parkinson’s disease: a new clinimetric index (CISI-PD). Movement Disorders, 21(2), 208-
214.
Martinez-Martin, P., Rodriguez-Blazquez, C., Forjaz, M.J., de Pedro, J., & On behalf of
the Spanish-American Longitudinal PD Patient Study Group, (2009a). The Clinical
Impression of Severity Index for Parkinson’s disease: International Validation Study.
Movement Disorders, 24(2), 211-217
Martinez-Martin, P., Rodriguez-Blazquez, C., Abe, K., Bhattacharyya, K.B., Bloem, B.R.,
Carod-Artal, F.J., … Chaudhuri, K.R. (2009b). International study on the psychometric
attributes of the Non-Motor Symptoms Scale in Parkinson disease. Neurology, 73(19),
1584-1591.
Martinez-Martin, P., Carroza-García, E., Frades-Payo, B., Rodríguez-Blázquez, C., Forjaz,
M.J., de Pedro-Cuesta, J., & Grupo ELEP., (2009c). Psychometric attributes of the Scales
for Outcomes in Parkinson’s Disease-Psychosocial (SCOPA-PS): validation in Spain and
review. Revista de Neurología, 49(1), 1-7.
Mavandadi, S., Dobkin, R., Mamikonyan, E., Sayers, S., Ten Have, T., & Weintraub, D.
(2014). Benefit finding and relationship quality in Parkinson’s disease: A pilot dyadic
analysis of husbands and wives. Journal of Family Psychology, 28(5), 728-734.
Mazaheri, M., & Theuns, P. (2006). A study of How Satisfaction and Dissatisfaction with
Life Overall Relate to Satisfaction and Dissatisfaction in Specific Life Domains. Patient
Reported Outcomes Newsletter, 37, 24-27.
McLaughlin, D., Hasson, F., Kernohan, W.G., Waldron, M., Cochrane, B., & Chambers,
H. (2010). Living and coping with Parkinson’s disease: Perceptions of informal carers.
Palliative Medicine, 25(2), 177– 182.
Navarta-Sánchez, M.V., Caparrós, N., Riverol, M., Díaz de Cerio, S., Ursúa, M.E., &
Portillo, M.C., 2017. Core elements to understand and improve coping with Parkinson’s
disease in patients and family carers: A focus group study. Journal of Advanced Nursing,
73(11), 2609-2621.

This article is protected by copyright. All rights reserved.

 NICE. National Institute for Health and Care Excellence. Parkinson’s disease.
https://www.nice.org.uk/guidance/conditions-and-diseases/neurological-
conditions/parkinson-s-disease#evidence-summaries (accessed 15.12.17).
Accepted Article
Poewe, W., Seppi, K., Tanner, C.M., Halliday, G.M., Brundin, P., Volkmann, J., … Lang,
A.E. (2017). Parkinson disease. Nature Reviews. Disease Primers, 23(3), 17013.
Prizer, L.P., & Browner, N. (2012). The integrative care of Parkinson’s Disease: a
systematic review. Journal of Parkinson’s Disease, 2(2), 79-86.
Soundy, A., Stubbs, B., & Roskell, C. (2014). The experience of Parkinson’s Disease: A
systematic review and a meta-Ethnograpy. The Scientific Word Journal, 1-19.
Stebbins, G.T. (2012). Clinical rating scale development. En C. Sampaio, C.G. Goetz, A.
Schrag (Eds.), Rating Scales in Parkinsons disease. Clinical practice and research (pp. 3-
9). Oxford: Oxford University Press. pp: 3-9.
Terwee, C.B., Bot, S.D., de Boer, M.R., van der Windt, D.A., Knol, D.L., Dekker, J., …
de Vet, H.C. (2007). Quality criteria were proposed for measurement properties of health
status questionnaires. Journal of Clinical Epidemiology, 60(1), 34-42.
Vassilev, I., Rogers, A., Kennedy, A., Wensing, M., Koetsenruijter, J., Orlando, R., …
(2016). Social Network Type and Long-Term Condition Management Support: A Cross-
Sectional Study in Six European Countries. PLoS One, 11(8), e0161027.
Wang, T.-J., Lin, M.-Y., Liang, S.-Y., Wu, S.-F. V., Tung, H.-H., & Tsay, S.-L. (2014).
Factors influencing peritoneal dialysis patients psychosocial adjustment. Journal of
Clinical Nursing, 23(1-2), 82–90.
Word Health Organization (2017). Chronic diseases. Available in:
http://www.who.int/topics/chronic_diseases/es/.
World Health Organization, 2018. WHO Framework on integrated people-centred health
services. http://www.who.int/servicedeliverysafety/areas/people-centred-care/en/
(accessed 29.01.18).
Zaragoza, A., Senosiain, J.M., Riverol, M., Anaut, S., Díaz de Cerio, S., Ursua, M.E., …
Portillo, M.C. (2014). Elementos clave en el proceso de convivencia con la enfermedad de
Parkinson de pacientes y familiares cuidadores. Anales del Sistema Sanitario de Navarra,
37(1), 69-80.
REFERENCE BLINDED FOR PEER REVIEW
REFERENCE BLINDED FOR PEER REVIEW

This article is protected by copyright. All rights reserved.

 IMPACT STATEMENTS

What does this paper contribute to the wider global clinical community?
Accepted Article
 Interventions to foster positive living with Parkinson’s disease should integrate
strategies to tackle and prevent loneliness and interagency elements to increase
community resources and systems of support
 Parkinson’s disease programmes that mobilise and optimize the use of community
resources, increase personal networks and social support seem to be the direction for
the management of neurodegenerative conditions

Table 1. Characteristics of the sample

Demographical Patients with PD

Response options
variables (n = 324)
Male 171 (52.78%)
Gender
Female 153 (47.22%)
Age --- 66.67  10.68 years (range: 36-94 years)
Married 215 (66.36%)
Single 19 (5.86%)
Marital status Widower 55 (16.98%)
Separated 29 (8.95%)
Others 6 (1.85%)
Retired 139 (42.90%)
Laboral inability 18 (5.56%)
Full time 28 (8.64%)
Employment Part time 49 (15.12%)
situation House keeper 57 (17.59%)
Unemployed 24 (7.41%)
Temporary dismissal 2 (0.62%)
Others 7 (2.16%)
Postgrads studies 6 (1.85%)
University studies 70 (21.60%)
Educational Secondary studies 103 (31.79%)
level Primary studies 103 (31.79%)
Can read and write 16 (4.94%)
Others 26 (8.02)
Age at PD
--- 56.9010.91 years (range: 24-84 years)
onset
Duration of PD --- 9.765.71 years (range: 1-28 years)
Duration of
treatment for --- 8.825.64 years (range: 0-28 years)
PD
PD: Parkinson’s Disease.
Mean  Standard Deviation

This article is protected by copyright. All rights reserved.

 Table 2. Descriptive statistics for appliqued assessments
Accepted Article
Number Theoretical range
Mean SD
of items /Observed rage
SCOPA-Motor 21 0-75/ 1-68 22.34 11.26

CISI-PD 4 0-24/ 0-24 7.61 4.00

NMSS 30 0-360/ 0-243 60.36 46.76

SCOPA- PS 11 0-33/ 0-29 9.71 6.49

DUFSS 11 1-55/ 1-44 27.66 10.00

SLS-6 1 0-10/ 0-10 6.75 1.96

EC-PC 26 0-104/ 22-104 62.45 18.57

SD: Standard Deviation.

PD: Parkinson’s Disease.
SCOPA-Motor: The Scales for Outcomes in Parkinson’s Disease-Motor. CISI-PD:
Clinical Impression of Severity Index-PD. NMSS: Non-Motor Symptoms Scale. SCOPA-
Psychosocial: Scales for Outcomes in Parkinson’s Disease-Psychosocial. DUFSS: Duke-
UNC Functional Social Support Questionnaire. SLS-6: Satisfaction with life Scale- 6
items. EC-PC: Living with Chronic illness-PD Scale.

This article is protected by copyright. All rights reserved.

ccepted Articl
Table 3. EC-PC correlations with other scales

EC-PC domains
EC-PC
Total score Domain 1- Domain 2- Domain 3- Self- Domain 4- Domain 5-
Acceptance Coping Management Integration Adjustment
Hoehn & Yahr -0.09 -0.17 -0.05 -0.02 -0.13 -0.02
CISI-PD -0.16 -0.25 -0.07 -0.03 -0.14 -0.15
SCOPA-M -0.08 -0.27 -0.01 0.07 -0.03 -0.14
NMSS -0.32 -0.36 -0.23 -0.18 -0.24 -0.19
SCOPA-PS -0.25 -0.40 -0.09 -0.08 -0.23 -0.24
DUFSS 0.61 0.12 0.61 0.57 0.57 0.36
SLS-6 0.46 0.43 0.29 0.28 0.33 0.48

CISI-PD: Clinical Impression of Severity Index-PD. SCOPA-M: The Scales for Outcomes in Parkinson’s Disease-Motor. NMSS: Non-Motor
Symptoms Scale. SCOPA-PS: Scales for Outcomes in Parkinson’s Disease-Psychosocial. DUFSS: Duke-UNC Functional Social Support
Questionnaire. SLS-6: Satisfaction with Life Scale- 6 items. EC-PC: Living with Chronic illness-PD Scale.

This article is protected by copyright. All rights reserved.

ccepted Articl
Table 4. Multiple linear regression models

Dependent variables in each model

Independent Variables* EC-PC Domain 1- Domain 2- Domain 3- Domain 4- Domain 5-

Total score Acceptance Coping Self-Management Integration Adjustment
Beta Beta Beta Beta Beta Beta
(CI 95%) (CI 95%) (CI 95%) (CI 95%) (CI 95%) (CI 95%)

Adj R-squared 0.48 0.22 0.41 0.33 0.37 0.25

-0.11 *
Age
(-0.12 – -0.00)
-0.16 **
Gender
(-2.46 – -0.56)
0.15 *
Duration of PD
(0.03 – 0.22)
0.26 *** 0.29 *** 0.12 * 0.34 ***
SLS-6
(1.56 – 3.35) (-0.52 – 0.05) (0.03 – 0.44) (0.67 – 1.40)
-0.10 * -0.19 ** -0.11 *
NMSS
(-0.08 – -0.002) (-0.03 – -0.01) (-0.02 – 0.00)
0.51 *** 0.58 *** 0.52 *** 0.55 *** 0.21 ***
DUFSS
(0.79 – 1.10) (0.33 – 0.48) (0.16 – 0.23) (0.21 – 0.30) (0.07 – 0.19)
-0.16 *** -0.19 *** -0.16 **
SEH
(-2.59 – -0.75) (-1.09 – -0.38) (-0.54 – -0.11)

CI 95% = Confidence interval 95%

* p<0.05; ** p<0.01; *** p<0.001
PD: Parkinson’s Disease. Independent variables with at list one significant result. The complete list of independent variables was: age, gender (Male =
0, Female = 1), duration of studies, duration of PD, Disability and Motor complications (SCOPA-Motor), Non-motor symptoms burden (NMSS),
Satisfaction with life (SLS-6), Social support perceived by the patient (DUFSS), and Home economical situation (SEH).
Duration of studies, disability and motor complications did not reach statistical significance (p >0.05) in any model.

This article is protected by copyright. All rights reserved.