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Age and Ageing 2023; 52: 1–10
https://doi.org/10.1093/ageing/afac233
© The Author(s) 2023. Published by Oxford University Press on behalf of the British Geriatrics
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QUALITATIVE PAPER
Listening to the patients’ voice: a conceptual
framework of the walking experience
Laura Delgado-Ortiz1,2,3,†,Ashley Polhemus4,†,Alison Keogh5,Norman Sutton6,
Werner Remmele6,Clint Hansen7,Felix Kluge8,Basil Sharrack9,Clemens Becker10,
Thierry Troosters11,12,Walter Maetzler7,Lynn Rochester13,Anja Frei4,Milo A. Puhan4,
Judith Garcia-Aymerich1,2,3,
1Non-communicable diseases and Environment Programme, ISGlobal, Barcelona, Spain
2Department of Medicine and Life Sciences, Universitat Pompeu Fabra, Barcelona, Spain
3CIBER Epidemiología y Salud Pública, Barcelona, Spain
4Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland
5Insight Centre for Data Analytics, University College Dublin, Dublin, Ireland
6Mobilise-D Patient and Public Advisory Group
7Department of Neurology, University Medical Center Schleswig-Holstein, Kiel, Germany
8Department of Articial Intelligence in Biomedical Engineering, Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU),
Erlangen, Germany
9Department of Neuroscience and Shefeld NIHR Translational Neuroscience BRC, Shefeld Teaching Hospitals NHS Foundation
Trust & University of Shefeld, Shefeld, UK
10Depar tment of Clinical Gerontology, Robert-Bosch-Hospital, Stuttgar t, Germany
11Depar tment of Rehabilitation Sciences, KU Leuven, Leuven, Belgium
12Depar tment of Respiratory Diseases, University Hospitals Leuven, Leuven, Belgium
13Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne NE4 5PL,
UK
Address correspondence to: Judith Garcia-Aymerich, Non-communicable Diseases and Environment Programme, ISGlobal. Av.
Dr. Aiguader 88, PRBB08003 Barcelona, Spain.
Te l : ( +34) 93 214 73 80; Email: judith.garcia@isglobal.org
†These authors contributed equally to this publication.
Abstract
Background: walking is crucial for an active and healthy ageing, but the perspectives of individuals living with walking
impairment are still poorly understood.
Objectives: to identify and synthesise evidence describing walking as experienced by adults living with mobility-impairing
health conditions and to propose an empirical conceptual framework of walking experience.
Methods: we performed a systematic review and meta-ethnography of qualitative evidence, searching seven electronic
databases for records that explored personal experiences of walking in individuals living with conditions of diverse aetiology.
Conditions included Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease, hip fracture, heart failure,
frailty and sarcopenia. Data were extracted, critically appraised using the NICE quality checklist and synthesised using
standardised best practices.
Results: from 2,552 unique records, 117 were eligible. Walking experience was similar across conditions and described by
seven themes: (i) becoming aware of the personal walking experience, (ii) the walking experience as a link between individuals’
activities and sense of self, (iii) the physical walking experience, (iv) the mental and emotional walking experience, (v) the social
walking experience, (vi) the context of the walking experience and (vii) behavioural and attitudinal adaptations resulting from
the walking experience. We propose a novel conceptual framework that visually represents the walking experience, informed
by the interplay between these themes.
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L. Delgado-Ortiz et al.
Conclusion: a multi-faceted and dynamic experience of walking was common across health conditions. Our conceptual
framework of the walking experience provides a novel theoretical structure for patient-centred clinical practice, research and
public health.
Keywords: walking, qualitative research, chronic condition, frailty, ageing, older people
Key Points
•By considering the voice of the patient, we defined previously unconceptualised aspects of walking and the walking
experience.
•Our findings suggest that the walking experience is similar across health conditions of diverse etiology, despite specific signs
and symptoms.
•Our findings support the notion that walking experience is both a complex and meaningful aspect of health for individuals
living with diverse health conditions and that it is multi-faceted, dynamic and universal.
•We propose a conceptual framework of the experience of walking, which provides a novel theoretical structure for patient-
centred clinical practice, research and public health.
•Future healthy ageing efforts can be built upon our framework to remain grounded in the needs and lived experiences of
individuals.
Introduction
Walking is crucial for an active and healthy ageing [1,2].
Both the rapidly ageing population and the rise of chronic
and disabling health conditions worldwide [3] forecast an
increase in the proportion of people living with walking
impairment, as people tend to slow down and walk less
with increasing age [4,5] and in the presence of diverse
health conditions [6–9]. To face this challenge, research on
how to assess and modify walking and walking impairment
has become a global priority [10–12]. However, for this
research to be impactful, it is imperative to understand what
is walking, and which aspects are meaningful to measure and
modify it, specifically from the perspectives of those living
with mobility-impairing health conditions.
Previous research has contributed directly or indirectly
to the conceptualisation of walking, frequently framing it
within the context of ageing [13–17]. Walking is generally
defined as a method of locomotion which involves the
use of the two legs to provide both support and propul-
sion [18]. However, there is consensus that walking is not
an isolated activity and that it is influenced by contextual
barriers and facilitators [13–17]. us, the International
Classification of Functioning, Disability, and Health (ICF)
[13], perhaps the best-known framework contributing to the
conceptualisation of health constructs, formulates walking
in terms of ‘body structure and function’, ‘activities and
participation’ and ‘contextual factors’ [13]. ese existing
definitions and frameworks have made important contribu-
tions to the understanding of walking and have been fre-
quently used in public health and research initiatives. How-
ever, they are all based on theoretical and clinical knowledge
and ignore the evidence arising from personal experiences.
Considered a pillar of quality in health care [19,20], personal
experiences are an important aspect of disease management,
outcome development and intervention evaluation [21–24],
and they are increasingly used in decision-making processes
for health priority setting [19,20,23]. In the case of walk-
ing, personal experiences can clarify the impact of walking
impairment on people’s lives, thus suggesting priorities for
future research and public health initiatives. Despite the
existence of disease-specific evidence [25–30], no attempt
has been made to conceptualise it in a broader manner, gen-
eralizable to diverse health conditions and usable in research
of multiple conditions and in health systems’ initiatives.
is study aimed to identify and synthesise evidence
describing walking as experienced by adults living with
diverse health conditions and to propose an empirical
conceptual framework of the walking experience. We
focused on a set of pre-defined, purposively selected
health conditions, representing different aetiologies (i.e.
neurological, cardiopulmonary and geriatric conditions)
of walking impairment, namely Parkinson’s disease (PD),
multiple sclerosis (MS), chronic obstructive pulmonary
disease (COPD), hip fracture, heart failure (HF), sarcopenia
and frailty.
Methods
is study consisted of a systematic review of qualitative evi-
dence and subsequent meta-ethnography (i.e. a qualitative
synthesis method that is able to generate new theory from
the comparison and interpretation of individual qualitative
studies; Figure 1)[31–34]. Methods are reported adhering
to the Preferred Reporting Items for Systematic Reviews and
Meta-Analyses and the eMERGe meta-ethnography report-
ing guidance [35,36] and are described in greater detail
in the study protocol (CRD42020175038) [37]andinthe
Supplementary Appendices.
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Conceptual framework of the walking experience
Figure 1. Phases of a systematic review and meta-ethnography.
Meta-ethnography phases 1 and 2: getting started
and deciding what is relevant
We developed a systematic review search strategy in collab-
oration with clinical experts in geriatric medicine, neurol-
ogy, pneumology and physiotherapy, epidemiologists and
experts in qualitative patient experience research and an
experienced research librarian. Preliminary searches demon-
strated that an exhaustive review of walking impairment in
all health conditions was not feasible, therefore we limited
the study scope to seven highly prevalent health conditions
with diverse aetiologies and impact on walking: PD, MS,
COPD, hip fracture, HF, sarcopenia and frailty [11,25–30].
We searched seven electronic databases (Medline, CINAHL,
PsychINFO, Web of Science, the Cochrane Library, Embase
and Scopus) from inception until March 2020 (Supple-
mentary Appendix 1). ese searches were supplemented
by Google Scholar searches and manual reference screening.
All peer-reviewed and grey literature were eligible, though
conference abstracts were excluded. We reviewed full-text
articles written in English, German, Spanish, French, Dutch,
Norwegian, Hebrew, Italian, Catalan or Portuguese.
Eligible records had to address research questions
related to individuals’ experiences of walking in one of
the included health conditions using qualitative research
methods. We assessed eligibility in title, abstract and full-text
screening stages, testing for consistency between reviewers
(Supplementary Appendix 2)[
38]. During title and abstract
screening, records passed to the subsequent stage if at
least one of two independent reviewers (LD-O, AP, FK or
CH) deemed them eligible. During full-text screening, two
reviewers (LD-O and AP) screened all records independently,
noting reasons for exclusion and solving disagreements
through discussion.
One reviewer (LD-O) extracted relevant information
from all studies, and another reviewer (AP) checked
extractions for accuracy (Supplementary Appendix 3).
Consistent with previous literature [39,40], studies were
critically appraised for their methodological quality using the
NICE quality appraisal checklist [41] and were classified as
acceptable or fatally flawed. Of note, methodological quality
was used to classify papers but was not considered as an
eligibility criterion. In addition, according to impact on
our study, papers were classified as key (conceptually rich
with potentially important contributions to our synthesis),
satisfactory (less conceptually rich but relevant to the
synthesis) or minimal impact papers (relevant but provided
little content of value to the synthesis; Supplementary
Appendix 4)[
39]. e impact categories were used to
organise and interpret studies during the synthesis process
but not as eligibility criterion. During meta-ethnography
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L. Delgado-Ortiz et al.
phases 3–6 (see below), we focused first on key papers; then,
we used satisfactory papers to refute or validate our initial
findings; and finally, we used minimal impact papers to
confirm data saturation of our results. In congruence with
the iterative nature of our work, we met frequently to discuss
emerging perceptions, assumptions and interpretations [32]
and to re-assess papers’ contributions if needed.
Meta-ethnography phase 3: reading included studies
Once all eligible studies were identified, we established a
synthesis team composed of three reviewers (LD-O, AP and
AK) with diverse backgrounds. is team re-read included
studies and individually extracted primary data coming from
participants’ quotations (labelled as first-order constructs)
and authors’ metaphors and interpretations of primary
data (labelled as second-order constructs; Supplementary
Appendix 5)[
31,32].
Meta-ethnography phase 4: determining how
studies are related
We assessed commonalities and differences between the
second-order constructs of all studies and compiled an initial
set of third-order constructs (i.e. reviewers’ interpretations
of second-order constructs) that were named as key concepts
(Supplementary Appendices 6 and 7)[32].
Meta-ethnography phase 5: translating studies into
one another
In this phase, we followed a process known in meta-
ethnographies as ‘translation’ [31–34]inwhichwere-
interpreted the second-order constructs and key concepts
in each study from the perspectives of other included
studies. is re-framing allowed us to explore the nuances
of each key concept, identifying similarities and differences
between studies, contexts and patient populations. As the
starting point of translations can influence the trajectory
of the synthesis [31–34], we first grouped studies by
condition and translated them within conditions following
a chronological order. en, we translated the translations
from each condition into the others, with each reviewer
starting from a different point. is prevented a dispro-
portionate influence of one condition or study over the
rest and forced us to actively challenge the conceptions
formed during earlier phases of the synthesis. During
the translation process, we grouped key concepts into
a second set of third-order constructs that we named
themes (i.e. reviewers’ interpretations of key concepts;
Supplementary Appendix 8).
Meta-ethnography phases 6 and 7: synthesizing
translations and expressing the synthesis
We addressed themes as a whole using several standardised
synthesis techniques (i.e. reciprocal, refutational and line
of argument synthesis) [31–34] and proposed a concep-
tual framework that described how walking is experienced
across diverse health conditions. We invited five members
of Mobilise-D Patient and Public Advisory Group [42](two
diagnosed with PD, two with MS and one with COPD) to
assess the proposed conceptual framework for face validity
(i.e. to discuss it within the context of their own experiences
and perspectives). Where appropriate, we took their feed-
back into consideration to clarify or re-frame our results.
Moreover, we invited two of them to critically review and
co-author this publication (NS and WR).
Results
Search results
Searches identified 2,552 unique records of which 450
underwent full-text review. Ultimately, 117 studies were
eligible for the meta-ethnography (Figure 2). Eligible studies
represented all included conditions except for sarcopenia.
Agreement among reviewers was substantial (Fleiss’ K=0.64
between four raters) and almost perfect (Cohen’s K= 0.98)
during abstract and full-text screening, respectively. Seven-
teen of the included studies were classified as key papers,
36 as satisfactory papers and 64 as minimal impact papers.
With regard to methodological quality, 102 studies were
considered acceptable and 15 were considered fatally flawed.
Characteristics and critical appraisal of included studies are
described in greater detail in Supplementary Appendices 3
and 4.
Themes of the walking experience
From eligible studies, we extracted the first- and second-
order constructs and subsequently identified 32 key con-
cepts describing different aspects of the walking experience
(Supplementary Appendixes 6 and 7). ese key concepts
were common to all conditions and therefore were grouped
into seven inter-related themes that explain the experience of
walking in the presence of diverse health conditions (Supple-
mentary Appendix 8). emes were identified in all included
conditions and are described as in the following text.
Becoming aware of the personal walking experience
We consistently identified that, in the presence of signs and
symptoms of mobility-impairing health conditions, walking
deteriorates and begins to require conscious effort, resulting
in an awareness of walking which is not present when
walking is unimpaired. From the moment (or moments) in
which changes in walking are noticed, individuals become
increasingly aware of their need to increase physical exertion,
concentrate, plan ahead and adapt to complex environments.
From then on, they realise the integral role of walking in their
daily activities and often compare their current experiences
to an effortless past in which walking was perceived as easy
and automatic (Supplementary Appendix 8).
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Conceptual framework of the walking experience
Figure 2. Flow diagram of included studies.
The walking experience as a link between individuals’ activities
and sense of self
e walking experience relates to individuals’ desire to per-
form activities which could potentially be hampered by
impairment. ese walking-related activities of daily living
may be basic (such as bathing or dressing), instrumental
(such as performing household chores or grocery shopping),
leisurely (such as engaging in a hobby or dog walking) or
work-related. Experiences reflect both the ability to per-
form these activities as well as the walking-related adverse
events experienced during these activities, such as falls or
symptom exacerbations. Walking is symbolic of indepen-
dence, control, normalcy and well-being because it governs
one’s ability to engage in activities safely. When walking
impairments affect activities associated with domestic and
social roles, they indirectly challenge individuals’ sense of
self. us, individuals’ sense of self is inextricably linked to
the walking-related activity through the walking experience
(Supplementary Appendix 8).
The physical walking experience
Individuals consistently described a physical experience
of walking, which is characterised by an overall loss of
physical function. Common signs and symptoms of each
condition affect—or are affected by—walking performance
both directly and indirectly. Many of these signs and
symptoms are common across conditions, including fatigue,
pain, weakness and lack of balance. Changes to walking
performance, such as slowed walking speed, altered step
patterns and reduced ability to take long walks, are also
common. Unpredictable symptoms cause walking ability
and walking experiences to vary from day to day and
even hour to hour. Walking impairments also raise notable
physical safety risks associated with falling, exacerbation
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L. Delgado-Ortiz et al.
or becoming stranded when the walking ability suddenly
changes (Supplementary Appendix 8).
The mental and emotional walking experience
Across all conditions, individuals describe walking as a com-
plex mental and emotional experience. Initial experiences
of mourning and loss are almost universal as individuals
become aware of their walking impairments. ereafter,
walking is often accompanied by feelings of fear, anxiety,
stress, anger, frustration and embarrassment during or in
anticipation of walking activities. Fear and anxiety often
cause withdrawal and reduced participation, resulting in
feelings of loneliness and hopelessness. As walking becomes
increasingly effortful, additional motivation is required to
initiate and complete activities, though the desire to main-
tain fitness or health increases motivation to walk. In this
context, walking-related activities are frequently framed as
goals that, when successfully completed, lead to positive
feelings of satisfaction, fulfilment and achievement (Supple-
mentary Appendix 8).
The social walking experience
Individuals describe a social experience of walking which
can be enhanced or hindered by walking impairments.
Individuals’ social networks influence walking experiences at
home, at work and in the broader community and therefore
moderate the ability to sustain participation in daily life.
Individuals assume different roles and identities within these
networks, which are typically influenced by social and gender
norms and frequently threatened by walking impairment.
e availability of social support often influences individuals’
engagement in activities which require walking, with lack of
support leading to withdrawal, decreased participation and
social isolation. Supportive networks accommodate walking
impairments and foster a sense of belonging, whereas
unsupportive networks prompt a sense of otherness when
unwanted visible impairments lead to social judgement or
misconceptions (Supplementary Appendix 8).
The context of the walking experience
Physical, mental and emotional and social experiences of
walking are framed within physical, social-cultural and per-
sonal contexts. Physical contexts include indoor and out-
door environments in individuals’ life spaces. e home is
perceivedbothasasafe,familiarspaceandasachallenging
space where falls often occur and obstacles are difficult to
navigate. Neighbourhoods and communal spaces challenge
individuals with uneven surfaces and crowds, demanding
extra attention and often triggering additional walking diffi-
culties. At the community level, walking impairments limit
individuals’ ability to use powered transportation such as
buses. Furthermore, weather and climate often make walk-
ing more dangerous or difficult. e socio-cultural context
includes social and cultural norms, which determine whether
individuals engage in certain walking-related activities or
not. Individuals often compare themselves to others to assess
and contextualise their own level of walking impairment.
Finally, the personal context includes personal attitudes, past
experiences, ageing, the presence of comorbidities and other
characteristics that could impact the walking experience
(Supplementary Appendix 8).
Behavioural and attitudinal adaptations resulting from the
walking experience
Walking experiences frequently prompt attitudinal and
behavioural responses, many of which entail strategies
for coping with the effects of walking impairment. Some
strategies, such as engaging in structured exercise or
participating in interventions, aim to maintain function.
Others aim to manage changing abilities through staying
positive, planning ahead, pacing or adopting assistive
technologies. Many of these strategies, especially the
adoption of assistive technologies, carry a psychological
toll as individuals grapple with their changing abilities and
identities. In many cases, individuals are forced to prioritise
among activities that are considered of high value and
may ultimately choose to forego activities that become too
dangerous, difficult or psychologically daunting. Changes in
behaviour often reflect attitudinal changes towards walking-
related activities, physical activity, social priorities and the
future (Supplementary Appendix 8).
Conceptual framework describing walking as
experienced in the presence of chronic conditions
Using the seven identified themes, we developed a concep-
tual framework that visually represents the experience of
walking for individuals living with health conditions which
impair walking (Figure 3). Briefly, walking experience is
multi-faceted, with constant interplay between its physical,
emotional and social components. Walking experience is
framed by the context (physical, socio-cultural and/or per-
sonal) and the activities individuals aim to perform. More-
over, the walking experience creates a link between daily
activities and the sense of self as changing abilities shape
social roles, attitudes and behaviours over time.
Discussion
In this systematic review and meta-ethnography, we synthe-
sised 117 qualitative research studies addressing the walking
experience from the perspective of individuals living with
diverse health conditions. We found that the experience of
walking is: (i) multi-faceted, as it is composed by seven inter-
related themes; (ii) similar across conditions of diverse aeti-
ologies and (iii) dynamic, as the walking experience is con-
stantly modifying and modified by the context, the specific
activities and the individual’s behaviour and sense of self.
Based on these findings, we propose a novel framework to
describe walking, informed by the experiences of individuals
living with diverse health conditions.
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Conceptual framework of the walking experience
Figure 3. Conceptual framework describing walking as experienced in the presence of diverse health conditions. e framework
uses the metaphor of a mechanical system to explain how people experience walking from the moment they become aware of it.
Physical, social and mental walking experiences are framed by context and the activity at hand. ese experiences link an individual’s
walking-related activities to their sense of self through behavioural and attitudinal adaptations. Reflexively, the individual’s newly
revised sense of self, behaviours and attitudes affect future experiences and participation in walking-related activities.
Main results and comparison with previous research
We identified the experience of walking as a multi-faceted
concept, supporting and advancing previous conceptualisa-
tions of walking. e aspects of our framework related to
activities, physical and social experiences, and adaptations
align with the concepts ‘body structure and function’ and
‘activities and participation’ of the ICF model [13]. Simi-
larly, context and adaptations are consistent with previous
frameworks considering these factors as part of walking [13–
17]. Importantly, our study identified themes that were
not addressed by previous conceptualisations, such as the
awareness, sense of self, mental experience and attitudes.
ese themes were closely interrelated with, but distinct
from, previously identified concepts. By considering the
voice of the patient, we defined previously unconceptu-
alised aspects of walking which are meaningful to individ-
uals, thus contributing directly into one of the four action
areas of the United Nations’ Decade of Healthy Ageing
(2021–2030) [1].
A surprising finding of this meta-ethnography is that
walking experiences are similar across health conditions
despite diverse signs and symptoms. is finding chal-
lenges traditional disease-focused and function-centric
perspectives which interpret walking impairments in terms
of a condition’s hallmark symptoms. Our results show
that walking should be assessed not only according to
clinical milestones but also according to its personal
meaning and impact [24]. is reflection resembles early
discussions on integrated care when the care for patients
with chronic or disabling health conditions faced problems
of fragmentation, incoordination, discontinuity across time,
place and discipline [43–47]. By assuming the patient-
centred perspective of integrated care also in the walking
field [43,46], walking impairments remain disease-specific,
but walking experience becomes a universal concept.
Our conceptual framework suggests a dynamic mecha-
nism by which the physical, mental and social experiences
of walking constantly change, modify and are modified by
the performance of walking-related activities and by the
individual’s sense of self. At the same time and in response
to walking experiences, individuals are constantly changing
their attitudes and adapting their behaviour. As an exam-
ple, an individual who can no longer go grocery shopping
independently (activities and sense of self) due to a disabling
health condition may decide to start using a cane regularly
(adaptations) which changes their physical, mental and social
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L. Delgado-Ortiz et al.
experiences of walking. is dynamic nature of the walking
experience aligns with established theories describing the
impact of health conditions on life experiences, such as
normalisation (i.e. constant adaptation to a ‘new normal’)
[48] or the shifting perspectives model [49]. us, our frame-
work of walking experience suggests that repeated walking
assessments should complement current clinical assessments
of disabling health conditions to enable appropriate and
meaningful health care.
Clinical relevance
Our findings confirm that walking is a meaningful aspect
of health which should be addressed in regular clinical
practice even when it is only indirectly affected by a
condition’s underlying aetiology. As key providers of
healthcare treatments and advice, clinicians are encouraged
to: (i) assess walking experience regularly and repeatedly as a
multi-faceted vital sign, since this will provide them with
useful information on how they can help patients meet
their long term care needs, improve their quality of life
and maintain independence at older ages. Assessment may
include a conversation with patients to ask about how they
perceive and experience changes in their everyday walking
(i.e. how this affects their ability to carry out their daily
routine activities such as going to the shops, crossing the road
and any other personal, social and work-related challenges
they experience). It may also include the perceptions of
carers/partners or other family members where possible,
and it may also consider formal tools to assess patients’
perception and capacity of walking and if this has changed;
(ii) provide adequate and targeted walking advise to patients
according to their individual physical, mental and social
conditions and needs, and (iii) eventually refer them to allied
professionals to prompt secondary or tertiary prevention
strategies [50] that also take into consideration the walking-
related activities patients want to perform, the context in
which they walk and the changes in their attitudes and
adaptations to the presence of walking impairment.
Implications
is study provides a novel theoretical structure for future
work in the context of an active and healthy ageing [1,
2,51], and therefore it also has important implications
for research and public health. First, future research should
complement current methods for measuring walking, which
predominantly reflect mechanics and lower limb function,
with innovative tools which reflect the lived experience of
walking [11,12,52]. ese tools should capture aspects of
the walking experience which are meaningful to individuals
[12,24] and, once validated, should be used as outcome
measures in drug and non-drug therapeutic and preventive
trials as well as in observational studies to describe levels,
correlates and changes over time in walking experience [12,
52]. As an example, the recently developed and validated
PROactive Physical Activity (PPAC) suite of instruments
in COPD measure patients’ experience of physical activity
[53,54] and have provided both better characterisation of
physical activity [55] and a deeper understanding of the
effectiveness of drug interventions [56,57] than objectively
measured physical activity. Second, our results contribute to
current healthy ageing international efforts by establishing a
detailed list of interrelated themes and a conceptual frame-
work upon which new public health interventions and care
delivery modes can be built [1].
Strengths and limitations
Our study has some limitations. First, we considered evi-
dence arising from six chronic conditions with variable levels
of evidence. To avoid bias or the undue influence of a
single condition, these six were chosen carefully to reflect
diversity, and evidence was considered through a thorough,
standardised synthesis process. Still, the generalizability of
our framework to other health conditions, such as rheumatic
diseases, should be confirmed. Second, by excluding studies
written in languages unfamiliar to the review team, we
might have missed evidence arising from different socio-
cultural contexts. ird, we considered evidence available
until March 2020 and it is possible that potentially relevant
studies have been published since then. However, taking into
consideration that we reached conceptual saturation during
the synthesis process [58], the inclusion of more recent
studies would likely yield similar results.
Our review also has several strengths. First, we ensured
methodological rigour by strictly adhering to appropriate
guidance for synthesizing qualitative evidence [35,36]. Sec-
ond, the review and synthesis teams included researchers
from diverse personal and professional backgrounds. is
diversity fostered discussion and challenged each member
to evaluate studies from multiple perspectives. ird, we
considered the theoretical and methodological contexts of
individual studies while discussing our findings and inter-
pretations. Finally, we assessed the validity of our synthesis
and conceptual framework through member checking with
individuals living with the health conditions under study.
Conclusion
We found that a multi-faceted and dynamic experience of
walking is common across mobility-impairing health condi-
tions and proposed a conceptual framework of the walking
experience which provides a novel theoretical structure for
patient-centred clinical practice, research and public health.
Supplementary Data: Supplementary data mentioned in
the text are available to subscribers in Age and Ageing online.
Acknowledgements: is work was supported by the
Mobilise-D project that has received funding from the
Innovative Medicines Initiative 2 Joint Undertaking (JU)
under grant agreement No. 820820. is JU receives support
from the European Union’s Horizon 2020 research and
innovation programme and the European Federation of
8
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Conceptual framework of the walking experience
Pharmaceutical Industries and Associations (EFPIA). Con-
tent in this publication reflects the authors’ view and neither
IMI nor the European Union, EFPIA or any associated
partners are responsible for any use that may be made of
the information contained herein. ISGlobal acknowledges
support from the Spanish Ministry of Science, Innovation,
and Universities through the ‘Centro de Excelencia Severo
Ochoa 2019–2023’ Programme (CEX2018-000806-S) and
support from the Generalitat de Catalunya through the
CERCA Programme.
Declaration of Conflicts of Interest: W.M. receives or
received funding from the European Union, the German
Federal Ministry of Education of Research, Michael J.
Fox Foundation, Robert Bosch Foundation, Neuroalliance,
Lundbeck and Janssen. He received speaker honoraria from
Abbvie, Bayer, GlaxoSmithKline, Licher MT, Rölke Pharma
and UCB and was invited to Advisory Boards of Abbvie,
Biogen, Lundbeck and Market Access & Pricing Strategy
GmbH and is an advisory board member of the Critical
Path for Parkinson’s Consortium. He serves as the co-chair
of the MDS Technology Task Force. L.R. is supported
by the National Institute for Health Research Newcastle
Biomedical Research Centre (BRC) based at Newcastle upon
Tyne Hospital NHS Foundation Trust and Newcastle Uni-
versity. B.S. is supported by the Sheffield BRC based at the
Sheffield Teaching Hospital and the University of Sheffield.
e remaining authors declare no competing interests.
Declaration of Sources of Funding: is work was sup-
ported by Mobilise-D, a European project that has received
funding from the Innovative Medicines Initiative 2 Joint
Undertaking under grant agreement No. 820820. e fun-
der did not play a role in the study design, data collection,
analysis, interpretation of data, writing of the report or in the
decision to submit the paper for publication.
References
1. WHO. Decade of Healthy Ageing: baseline report. Geneva:
World Health Organization; 2020.
2. Bousquet J, Kuh D, Bewick M et al. Operational definition of
Active and Healthy Ageing (AHA): a conceptual framework.
J Nutr Heal Aging 2015; 19: 955–60.
3. Abbafati C, Abbas KM, Abbasi-Kangevari M et al. Global
burden of 369 diseases and injuries in 204 countries and
territories, 1990–2019: a systematic analysis for the Global
Burden of Disease Study 2019. Lancet 2020; 396: 1204–22.
4. Studenski S, Perera S, Patel K et al. Gait speed and survival in
older adults. JAMA 2011; 305: 50–8.
5. Perera S, Patel KV, Rosano C et al. Gait speed predicts
incident disability: a pooled analysis. J Gerontol-Ser A Biol
Sci Med Sci 2015; 71: 63–71.
6. Hung WW, Ross JS, Boockvar KS, Siu AL. Association of
chronic diseases and impairments with disability in older
adults: A decade of change? Med Care 2012; 50: 501–7.
7. Zago M, Sforza C, Bonardi DR, Guffanti EE, Galli
M. Gait analysis in patients with chronic obstructive
pulmonary disease: a systematic review. Gait Posture 2018; 61:
408–15.
8. König N, Singh NB, Baumann CR, Taylor WR. Can gait
signatures provide quantitative measures for aiding clinical
decision-making? A systematic meta-analysis of gait variability
behavior in patients with Parkinson’s disease. Front Hum
Neurosci 2016; 10: 319.
9. Fox KM, Hawkes WG, Hebel JR et al. Mobility after hip
fracture predicts health outcomes. J Am Geriatr Soc 1998; 46:
169–73.
10. Brabrand M, Kellett J, Opio M, Cooksley T, Nickel CH.
Should impaired mobility on presentation be a vital sign? Acta
Anaesthesiol Scand 2018; 62: 645–52.
11. Polhemus A, Delgado-Ortiz L, Brittain G et al. Wal k i n g o n
common ground: a cross-disciplinary scoping review on the
clinical utility of digital mobility outcomes. NPJ Digit Med
2021; 4: 1–14.
12. Rochester L, Mazzà C, Mueller A et al. A roadmap to inform
development, validation and approval of digital mobility out-
comes: the Mobilise-D approach. Digit Biomarkers 2020; 4:
13–27.
13. World Health Organization. International Classification of
Functioning, Disability and Health (ICF). Geneva: World
Health Organization; 2001.
14. Webber SC, Porter MM, Menec VH. Mobility in older
adults: a comprehensive framework. Gerontologist 2010; 50:
443–50.
15. Patla AE, Shumway-Cook A. Dimensions of mobility: defin-
ing the complexity and difficulty associated with community
mobility. J Aging Phys Act 1999; 7: 7–19.
16. Carp FM. Significance of mobility for the well-
being of the elderly. Washington D.C., USA:
Transportation Research Board, National Research Council;
1988.
17. Lawton MP, Nahemow L. Ecology and the aging process. In:
e Psychology of Adult Development and Aging. Washing-
ton, DC, USA: American Psychological Association, 1973;
619–74.
18. Kluge F, Del Din S, Cereatti A et al. Consensus based frame-
work for digital mobility monitoring. PLoS One 2021; 16:
1–14.
19. Manary MP, Boulding W, Staelin R, Glickman SW. e
patient experience and health outcomes. N Engl J Med 2013;
368: 199–201.
20. Doyle C, Lennox L, Bell D. A systematic review of evidence
on the links between patient experience and clinical safety and
effectiveness. BMJ Open 2013; 3: 1–18.
21. Basch E. Patient-reported outcomes-harnessing patients’
voices to improve clinical care. N Engl J Med 2017; 376:
103–5.
22. US Food and Drug Administration. Guidance for Industry:
patient-focused drug development: collecting comprehensive
and representative input; guidance for industry, food and drug
administration staff, and other stakeholders (draft). Guidance
Document published by the Food and Drugs Administration
(FDA) 2018; 65: 1–41.
23. Rand L, Dunn M, Slade I, Upadhyaya S, Sheehan M.
Understanding and using patient experiences as evidence in
healthcare priority setting. Cost Eff Resour Alloc 2019; 17:
1–13.
24. Manta C, Patrick-Lake B, Goldsack JC. Digital measures that
matter to patients: a framework to guide the selection and
9
Downloaded from https://academic.oup.com/ageing/article/52/1/afac233/7008636 by Universitaet Kiel user on 03 February 2023
L. Delgado-Ortiz et al.
development of digital measures of health. Digital Biomarkers
2020; 4: 69–77.
25. Dobbels F, de Jong C, Drost E et al. e PROactive innovative
conceptual framework on physical activity. Eur Respir J 2014;
44: 1223–33.
26. Parry R, Buttelli O, Riff J et al. ‘e whole perimeter is
difficult’: Parkinson’s disease and the conscious experience of
walking in everyday environments. Disabil Rehabil 2019; 41:
2784–91.
27. Hammarlund CS, Andersson K, Andersson M, Nilsson MH,
Hagell P. e significance of walking from the perspective
of people with Parkinson’s disease. J Parkinsons Dis 2014; 4:
657–63.
28. Griffiths F, Mason V, Boardman F et al. Evaluating recovery
following hip fracture: a qualitative interview study of what is
important to patients. BMJ Open 2015; 5: 1–10.
29. Knox KB, Clay L, Stuart-Kobitz K, Nickel D. Perspectives on
walking from people with multiple sclerosis and reactions to
video self-observation. Disabil Rehabil 2020; 42: 211–8.
30. inuan P, Siviroj P, Barry CD, Gordon SC, Lerttrakarnnon
P, Lorga T. Narratives of older persons’ frailty and physical
activity in relation to environmental landscapes and time. Int
J Older People Nurs 2020; 15: 1–10.
31. Noblit G, Hare R. Meta-ethnography: synthesizing qualitative
studies. Newbury Park, CA: Sage Publications, 1988.
32. Sattar R, Lawton R, Panagioti M, Johnson J. Meta-
ethnography in healthcare research: a guide to using a meta-
ethnographic approach for literature synthesis. BMC Health
Serv Res 2021; 21: 1–13.
33. Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink
J. Conducting a meta-ethnography of qualitative literature:
lessons learnt. BMC Medical Researh Methodology 2008; 8:
1–10.
34. Toye F, Seers K, Allcock N, Briggs M, Carr E, Barker K.
Meta-ethnography 25 years on: challenges and insights for
synthesising a large number of qualitative studies. BMC Med
Res Methodol 2014; 14: 1–14.
35. France EF, Cunningham M, Ring N et al. Improving report-
ing of meta-ethnography: the eMERGe reporting guidance.
BMC Med Res Methodol 2019; 19: 1–13.
36. Page MJ, McKenzie JE, Bossuyt PM et al. e PRISMA
2020 statement: an updated guideline for reporting systematic
reviews. PLoS Med 2021; 18: 1–15.
37. Delgado-Ortiz L, Polhemus AM, Garcia-Aymerich J. Personal
perspectives on real world walking in chronically ill adults.
PROSPERO 2020. https://crd.york.ac.uk/prospero/display_
record.php?ID=CRD42020175038 (January 2022, date last
accessed).
38. Landis J, Koch G. e measurement of observer agreement
for categorical data. Biometrics 1977; 33: 159–74.
39. Dixon-Woods M, Sutton A, Shaw R et al. Appraising qualita-
tive research for inclusion in systematic reviews: a quantitative
and qualitative comparison of three methods. J Health Serv
Res Policy 2007; 12: 42–7.
40. Malpass A, Shaw A, Sharp D et al. ‘Medication career’ or
‘Moral career’? e two sides of managing antidepressants: a
meta-ethnography of patients’ experience of antidepressants.
Soc Sci Med 2009; 68: 154–68.
41. NICE. Methods for the development of NICE Public
Health Guidance (ird Edition). UK: National
Institute for Health and Clinical Excellence (NICE);
2012.
42. Mobilise-D. Mobilise-D Patient and Public Involvement
and Engagement. https://www.mobilise-d.eu/patient-and-pu
blic-involvement-and-engagement (January 2022, date last
accessed).
43. Goodwin N. Understanding integrated care: a complex pro-
cess, a fundamental principle. Int J Integr Care 2013; 13:
1–2.
44. Ferrer L, Goodwin N. What are the principles that underpin
integrated care? Int J Integr Care 2014; 14: 14–5.
45. Zonneveld N, Driessen N, Stüssgen RAJ, MMN M. Values
of integrated care: a systematic review. Int J Integr Care 2018;
18: 1–12.
46. Valentijn PP, Integrated C, Care P. Understanding integrated
care: a comprehensive conceptual framework based on the
integrative functions of primary care. Int J Integr Care 2013;
13: 1–12.
47. Starfield B. Is patient-centered care the same as person-focused
care? Perm J 2011; 15: 63–9.
48. Robinson CA. Managing life with a chronic condition: the
story of normalization. Qual Health Res 1993; 3: 6–28.
49. Paterson BL. e shifting perspectives model of chronic
illness. J Nurs Scholarsh 2001; 33: 21–6.
50. Porta MA. Dictionary of Epidemiology. Oxford University
Press Inc, USA: Sixth Edition Oxford University Press, 2014.
51. WHO. Active ageing: a policy framework. Geneva: World
Health Organization; 2003.
52. Mazzà C, Alcock L, Aminian K et al. Technical validation
of real-world monitoring of gait: a multicentric observational
study. BMJ Open 2021; 11: 50785.
53. Gimeno-Santos E, Raste Y, Demeyer H et al. e PROactive
instruments to measure physical activity in patients with
chronic obstructive pulmonary disease. Eur Respir J 2015; 46:
1150–66.
54. Garcia-Aymerich J, Puhan MA, Corriol-Rohou S et al.
Validity and responsiveness of the Daily-and Clinical visit-
PROactive Physical Activity in COPD (D-PPAC and C-
PPAC) instruments. orax 2021; 76: 228–38.
55. Koreny M, Demeyer H, Benet M et al. Patterns of physical
activity progression in patients with COPD. Arch Bronconeu-
mol 2021; 57: 214–23.
56. Watz H, Troosters T, Beeh KM et al. ACTIVATE: the effect
of aclidinium/formoterol on hyperinflation, exercise capacity,
and physical activity in patients with COPD. Int J Copd
2017; 12: 2545–58.
57. Troosters T, Maltais F, Leidy N et al. Effectofbronchodila-
tion, exercise training, and behavior modification on symp-
toms and physical activity in chronic obstructive pulmonary
disease. Am J Respir Crit Care Med 2018; 198: 1021–32.
58. Faulkner SL, Trotter SP. Data saturation. In: e Interna-
tional Encyclopedia of Communication Research Methods.
Wiley Online Library; 2017; 1–2.
Received 8 April 2022; editorial decision 1 August 2022
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