Paper describing the Patient Journey clinical model published in the Journal of Evaluation in Clinical Practice

1. Journal of Evaluation in Clinical Practice ISSN 1365-2753
Complex adaptive chronic care – typologies of patient
journey: a case study jep_1670 1..5
Carmel M. Martin MBBS MSc PhD MRCGP FAFPHM FRACGP,1 Deirdre Grady BSc MSc,2
Susan Deaconking MBBS,4 Catherine McMahon RN,4 Atieh Zarabzadeh
PhD Post. Dip. Stats. Post. Dip. Health Inf. BSc Soft. Eng.3 and Brendan O’Shea FRCGP MICGP5
1
Visiting Professor, National Digital Research Centre, Department of Public Health and Primary Care, Trinity College Dublin, Dublin, Ireland and
Associate Professor of Family Medicine, NOSM, Canada
2
Clinical Research Assistant, 3Health Informatics Software Engineer, National Digital Research Centre, Dublin, Ireland
4
Clinical Advisor, National Digital Research Centre, Dublin, Ireland
5
Lecturer in General Practice, Trinity College Dublin, Dublin, Ireland and Specialist in Occupational Medicine, General Practitioner and Medical
Director, Kildare and County West Wicklow Doctors on Call, Kildare, Ireland
Keywords Abstract
case management, chronic illness, complex
adaptive systems, diagnostic typologies, Rationale Complex adaptive chronic care (CACC) is a framework based upon complex
health services research, life course adaptive systems’ theory developed to address different stages in the patient journey in
analysis, observations of daily living, patient chronic illness. Simple, complicated, complex and chaotic phases are proposed as diagnostic
journey, primary care types.
Aims To categorize phases of the patient journey and evaluate their utility as diagnostic
Correspondence typologies.
Associate Professor Carmel M. Martin Methods A qualitative case study of two cohorts, identified as being at risk of avoidable
National Digital Research Centre, Crane hospitalization: 12 patients monitored to establish typologies, followed by 46 patients to
Street, Dublin 8, Ireland validate the typologies. Patients were recruited from a general practitioner out-of-hours
E-mail: carmelmarymartin@gmail.com service. Self-rated health, medical and psychological health, social support, environmental
concerns, medication adherence and health service use were monitored with phone calls
Accepted for publication: 23 March 2011 made 3–5 times per week for an average of 4 weeks. Analysis techniques included
frequency distributions, coding and categorization of patients’ longitudinal data using a
doi:10.1111/j.1365-2753.2011.01670.x
CACC framework.
Findings Twelve and 46 patients, mean age 69 years, were monitored for average of 28
days in cohorts 1 and 2 respectively. Cohorts 1 and 2 patient journeys were categorized as
being: stable complex 66.66% vs. 67.4%, unstable complex 25% vs. 26.08% and unstable
complex chaotic 8.3% vs. 6.52% respectively. An average of 0.48, 0.75 and 2 interventions
per person were provided in the stable, unstable and chaotic journeys. Instability was
related to complex interactions between illness, social support, environment, as well as
medication and medical care issues.
Conclusion Longitudinal patient journeys encompass different phases with characteristic
dynamics and are likely to require different interventions and strategies – thus being
‘adaptive’ to the changing complex dynamics of the patient’s illness and care needs. CACC
journey types provide a clinical tool for health professionals to focus time and care
interventions in response to patterns of instability in multiple domains in chronic illness care.
The patient journey in the complex There are multiple discernable phases or patterns across the
adaptive chronic care (CACC) disease and illness journey over time, which are associated with
theoretical framework considerable expenditure variation [4]. Stages of the patient
journey vary according to the dynamics and interconnected feed-
A CACC framework aims to describe the interdependent elements back loops among the bio-psycho-social, health care and environ-
of the personal care experience and the complex dynamic interac- mental domains as well as chronic disease progression [5,6].
tions between a patient and his or her health care providers within
the broader health system over time as a complex adaptive system
[1].1 The CACC model was designed to address the complex non-linearity in a system (i.e. many components are interacting and inter-
dependent such as in a primary health care environment), its behaviour can
systems nature of the chronic care model [2,3].
be unpredictable, and interventions frequently lead to unintended conse-
quences. Understanding and changing the behaviour of such a complex
1
The term ‘complex system’ formally refers to an interdependent system dynamic system requires an appreciation of its key patterns, leverage
of many parts that is coupled in a non-linear fashion. When there is much points and constraints.
© 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 1

2. Complex adaptive care – patient journeys C.M. Martin et al.
Based upon the Cynefin framework [7], patient journeys as typologies, and subsequently a second cohort would be monitored
complex adaptive systems were operationalized as simple, com- with support interventions. This aimed to validate the typologies in
plicated, complex and chaotic phases in CACC. a larger group and evaluate their clinical usefulness in identifying
the need for different frequency and intensity of community-based
care interventions. Interventions were non-clinical and aimed to
Stable – simple or complicated care phases of identify early signs of instability and provide information, support
chronic conditions or refer back to the general practitioner (GP) or appropriate social
Simple – people are well, functioning and stable; the aim of care is services.
to slow the progress of risk factors, single disease or a disease
cluster and optimize quality of life and prevent complications and
co-morbidities – for example, raised cholesterol, high blood pres-
Methods
sure, pre-diabetes or diabetes. Patients identified as being at risk of avoidable hospitalization
At this stage, medical care is stable; that is, patient care and attending Kildare and West Wicklow Doctors on Call (KDOC) GP
health states do not involve unstable dynamics and linear protocols cooperative out-of-hours service (OOH) were recruited. The
are generally appropriate. Conversely at another level, public KDOC database (October 2010–February 2011) was screened. All
health ‘care’ may involve dynamic complex individual and societal unplanned home visits, all encounters resulting in transfers by
interventions. For example, smoking cessation involves interven- ambulance, referrals to hospital or advised to attend Accident and
tions in a diverse range of complex systems from economics and Emergency were secondarily screened for the inclusion criteria:
markets, legislation, media as well as in health care with the • one chronic condition (>6 months), presenting as subacute or
provision of ‘simple’ quitting advice [8,9]. chronic flare-up, not acute surgical problem, not in long-term
Complicated – multiple factors cause morbidity, which usually care;
are chronic, and include bio-psycho-social environment compo- • 18 years or older;
nents; the aim is to balance self-care, health and pharmaceutical • have had a recent unplanned hospital admission to a medical
interventions and health-related co-morbidity. Treatment and ward, or
monitoring become more frequent and there are an increased • had a recent attendance at an emergency department, and
number of providers and care settings involved. Yet, health is • are able to record their health status online with an electronic
stable or deteriorating imperceptibly. diary or family or caregiver or take regular phone calls about
their health.
Summary data and outcomes of adult encounters were pro-
Complex (unpredictable dynamics) or chaotic vided to the team of two GPs, one nurse and one research assis-
(out-of-control) phases of chronic conditions tant in de-identified format. Potential cases were identified by
Complex – acute or subacute-on-chronic exacerbations, flares two team members. Full case notes were then reviewed to iden-
because of potential destabilization in bio-psycho-social environ- tify a list of eligible cases, which, if confirmed as suitable by
ment components including self-care, health and pharmaceutical their GPs, were recruited. The research team conducted an initial
interventions or health-related co-morbidity. Care may include assessment of consenting participants and caregivers in their
pre-terminal phase, frailty, risk of falls, depression and/or disease home and began daily health monitoring during working days of
flare-up stages. the week.
Chaotic – destabilization of multiple dimensions: falls, loss of
diabetic control, severe pain, shortness of breath, additional diag-
Monitoring daily health
nosis of cancer, mental health crisis and/or additional acute con-
ditions such as pneumonia resulting in environmental ‘blowouts’. Patients were phoned at a time suitable to their needs. The daily
Appropriate and timely community-based primary/primary health health survey questions included health-related questions includ-
care interventions can avoid these chaotic states. Chaotic states of ing self-rated health status, if their health status had changed
chronic illness have a high risk of leading to death (total stability), since the last interview, and if they had any other concerns. Psy-
but also may revert back to a stable trajectory or to an ongoing but chological questions included how often they felt very nervous,
increasing unstable health journey. calm and peaceful, and happy. Social questions included if they
Patients in these abovementioned states generally incur the had someone to take them out if needed, would there be
greatest health care expenditures, resulting from expensive someone to help cooking and cleaning and also if there had been
hospitalization and re-hospitalization with its associated high- any changes to the patient’s caregiver and family support
technology treatments, compared to people with similar diagnoses network. There were open-text fields available for the appropri-
who are more stable. ate questions where more information could be added. After each
daily interview, a summary of the interview was compiled to
complete the survey.
Aims
The study aims to categorize phases of the patient journey and
evaluate their utility as diagnostic typologies using a case study of
Findings
two cohorts, identified as being at risk of avoidable hospitalization. A total of 19 000 KDOC encounters (1/9/2010 to 7/11/2010 –
The first cohort would be monitored to describe patient journey cohort 1) and (17/12/10 to 17/2/2011 – cohort 2) were screened.
2 © 2011 Blackwell Publishing Ltd

3. C.M. Martin et al. Complex adaptive care – patient journeys
Figure 1 Cohort 1 and cohort 2 profiles.
Using a method of consecutive sampling 12 patients were
recruited to cohort 1 in October 2010 and 48 to cohort 2 in
December 2010, providing 286 and 720 daily monitoring reports
respectively. The profiles of cohort 1 and cohort 2 are described in
Fig. 1. Cohort 1 was a purely monitoring phase, while cohort 2
involved active care management by the project team.
Key elements of the patient journey are reported in five
dimensions of daily living – the presence of daily concerns, fluc-
tuations in self-rated health, fluctuations in caregiver and per-
ceived social support availability, medication changes and health
care changes.
Patterns of the patient journey were graphed and cate- Figure 2 Types of patient journey identified. ‘Stable patient’ demon-
gorized as stable, unstable being complex or chaotic. This was strates an absence of daily concerns, and stability in self-rated health,
carried out by C. M. and D. G. initially on an independent support, medication and health care. ‘Unstable patient’ demonstrates
basis and consensus was reached on a case by case basis for daily concerns about pain which preceded a worsening of self-rated
cohort 1. health followed by a change in medication and eventually re-stabilizes,
These predominant patient journey patterns were identified in while social support does not change, as he lives alone. ‘Chaotic patient’
the following proportions described in Fig. 2. Key types of patient demonstrates caregiver support issues as the root cause which are not
narratives from cohort 1 are described using pseudonyms. Figure 3 resolved and trigger a chaotic phase of illness in her and her mother
describes the frequency of interventions and average length of resulting in hospitalization and death. Support change 1 = yes, 2 = no;
phone calls for different types of patient journey. concerns 1 = yes; 2 = no; medication change 1 = yes; 2 = no; health
care change 1 = yes; 2 = no and self-rated health was scored very
poor = 0; poor = 2; fair = 4; good = 6; very good = 8 and excellent = 10.
RIP, rest in peace (deceased).
Stable complex
Patient 1 – Eileen
Eileen is 93 years old and lives with her daughter, Sharon, and Unstable complex
her family in a very comfortable home. Her problems are chronic
shortness of breath because of chronic obstructive pulmonary Complex and chaotic re-stabilizing patient
disease, cardiac problems including coronary artery bypass graft-
Patient 2 – Bill
ing, back pain and early Alzheimer’s disease. She has moved in
with her family following hospitalization for chronic obstructive Bill is 63 years old and lives on his own in a hostel with a landlady.
pulmonary disease. Throughout the monitoring phase, Eileen He has type 2 diabetes, vertigo and dizziness of unclear aetiology.
remains very well and her social support and medical condition He suffered a fall and fractured several ribs, with recurrent chest
remains stable despite a complicated medical condition with pains and vertigo 1 month before entering the study. Brian struggles
multiple morbidity. with chronic pain and vertigo, despite taking a 2-week holiday. On
© 2011 Blackwell Publishing Ltd 3

4. Complex adaptive care – patient journeys C.M. Martin et al.
Journey type Stable complex Unstable complex Unstable complex on the Death
edge of chaos
Cohort 1 66.6% 26.8% 6.6% 1
Cohort 2 67.4% 26.8% 5.8% 0
Rates of intervention 31 patients, 15 12 patients, 16 3 patients, 6
(case management) interventions interventions interventions
Figure 3 Frequency of ‘types’ of patient
journey over 4-week monitoring in cohort 1
Phone call duration 1–2 minutes >2–5 minutes >5 minutes
and interventions and call for cohort 2 –
according to category of participant.
return from his holiday, he suffered an attack of dizziness on the terol for some years. She lives with her daughter Margaret who
plane and was admitted via a KDOC attendance. Subsequently, he was widowed 8 months previously, and who works in her own
made three visits to Accident and Emergency and was admitted business as well as caring for her mother. Mary has become
twice, without going through his GP or KDOC. increasingly difficult to manage as she is not sleeping at night,
and Margaret is becoming increasingly stressed and her blood
pressure which is normal has become elevated associated with
Edge of chaos – stable complex–chronic, severely her chronic exhaustion because of her mother’s insomnia.
impaired and remains at risk of destabilization Margaret reported daily concerns and issues and was increas-
Patient 3 – Ann ingly depressed and fatigued. The insomnia predated the stress,
and Margaret required an emergency visit to the OOH where
Ann is 32 years old and she has poor quality of life for 13 years her blood pressure was found to be exceedingly high. And hos-
since she developed Crohn’s disease. Her quality of life deterio- pital admission was suggested, despite medication for stress
rated when she developed abdominal sepsis and underwent Margaret’s condition worsened. Mary became increasingly agi-
unsuccessful surgery which involved incision and drainage. tated and concerned that she was being rejected, and went into
Since the birth of her daughter 12 years ago, she has been in an acute anxiety state when she was admitted for respite care.
chronic pain with recurrent infection. She lives with her daughter She was diagnosed as having acute heart failure (probably the
but cannot leave the house as she has unpredictable and explo- cause for her insomnia at home) but was unable to recover and
sive bowel movements. She presents to Dr Jones daily for pain was admitted to hospital and died. The admission diagnosis and
relief injections and also received a pain injection from her cause of death was heart failure, but the root cause of the
public health nurse on weekday mornings. She requires the assis- problem was apparent 2 weeks earlier as daily concerns and car-
tance with pain relief of an OOH service at the weekends. She egiver reporting represented a complex interplay of early demen-
suffers from panic attacks and depression as a result of her tia, incipient heart failure, caregiver bereavement and stress and
complex physical state and social isolation. Since her worsening exhaustion.
health state, she has lost her job and her friends. She frequently Unstable journeys reflected a dynamic interplay of physical,
takes her anger out on her daughter. Her daughter is also at risk psycho-social, caregiver-related, medication and medical issues,
of social isolation and neglect which Ann is aware of. Ann has rather than purely a disease flare-up. Greater instability reflects
chronic poor self-rated health and very severe pain and consti- the need for more interventions. Phone calls varied in length
pation with frequent medication changes. She has been referred depending on the journey phase of the participant, as well as the
to hospital numerous times but refuses to be admitted because of occurrence of any health or social concerns requiring an inter-
concerns over the care of her daughter. She is trying to move vention. Phone calls to stable participants were typically 1–2
house to be closer to her Mum which also would allow her minutes in duration if there were no reported concerns, with
daughter to be closer to her friends. She is addicted to morphine topics of conversation varying from one patient to the next.
and continually requires antibiotics and pain relief. Her pelvic Phone calls to participants with greater instability were longer in
abscesses continually flare and require draining with increasing duration as there were more issues to discuss and longer again in
frequency. She is on the edge of chaos with frequent suicidal the cases with problem identification and interventions.
thoughts and is at risk of requiring emergency surgery. Ann Over 1 month – there were an average of 0.48 interventions per
states that she really benefits from the support of monitoring 5 patient in the complex stable group; 0.75 interventions per patient
days a week because her life is so difficult and needs encour- in the ‘unstable complex and chaotic re-stabilizing’ and 2 inter-
agement and social support on a daily basis. ventions per person in the edge of chaos group. Interventions
included advice to visit/call GP/practice nurse in response to
symptoms that were new or worsening including pain, and mental
Unstable chaotic leading to death
distress; to contact the pharmacist in relation to problems with
medication adherence; to contact public health or social services
Patient 4 – Mary
for social, environmental or housing needs including heating. Car-
Mary is 88 years old, widowed for 15 years, has very early egiver issues were addressed through referral to local services or
dementia and has been treated for hypertension and high choles- alerting the GP.
4 © 2011 Blackwell Publishing Ltd

5. C.M. Martin et al. Complex adaptive care – patient journeys
chronic conditions can be stable or unstable, simple, complex or
Discussion chaotic. Each pattern can be identified early and responds well to
Patterns of patient journey in patients at high risk of hospitaliza- problem-specific care approaches, be it medical, social or carer
tion were identified using a CACC model. The majority of patients support. CCAC is operationalized as adaptively responding to
were classified as stable complex, with no patients being simple or phases and instability in the patient journey.
complicated. About 30% were unstable complex or on the edge of
chaos. Both cohorts scored highly on the probability of repeat
admissions score [10], indicating that OOH service contact may
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© 2011 Blackwell Publishing Ltd 5