Maria Luisa’s Catch-22 and Minimally Disruptive Medicine (Photo essay)

In Joseph Heller’s classic novel Catch-22, the protagonist John Yossarian is a Captain in the Air Force during World War II. Yossarian does not want to fly any more missions as flying could be very dangerous. He reasons that any sane person would not want to fly, however, the only people who do not have to fly are those deemed insane and thus unfit to fly, the catch, the Catch-22, is that those who are insane and want to fly and thus can, but don’t have to, and those are sane don’t want to, but have to.1

Anyway, this story isn’t about an Air Force captain, this is the story of Maria Luisa, a woman stuck in the Catch-22 of health and illness; to live the life she wants to live she must manage her health, but managing her health prevents her from living the life she wants to live.

Maria Luisa, 87, a native of Peru, lives in the last frontier, Alaska. She has 3 children, 13 grandchildren and 12 great grandchildren. She has hypertension and, for the last 5 years, she has been on hemodialysis. Maria Luisa lives with her son, who is her caregiver and also a patient with chronic disease. Three times a week, she wakes up at 5:30 am, fixes some breakfast, and bundles up against the cold, which routinely reaches -10°C. Her son then drives her to the dialysis center at 6 a.m.

When she is not hooked up to the dialysis machine, she enjoys shopping (or window shopping), which also gives her a chance to be active. However, because of her health conditions she often gets short of breath which makes walking (and shopping) more difficult. To try and manage her medical conditions Maria Luisa takes 10 to 13 pills daily, to help organize her medications, Maria Luisa and her son, every Sunday, uses color-coded bottles to arrange her medications according to the day of the week and the time of day of each dose. In addition to this Maria Luisa tries to adhere to a diet that is low in salt, potassium, phosphorus, protein, and water. As a result of this she often copes with this limitation with dietary indiscretions that contribute to worsening of her health and to emergency department visits.

Organizing her medications, attending dialysis, scheduling doctors’ appointments, and adhering to her diet, while helpful to manage her chronic health conditions gives her lots of work; work that is disruptive to the life that Maria Luisa is trying to live in spite of her health conditions – a Catch-22.

Despite these difficulties Maria Luisa has resources she can mobilize to help her manage her health and the work and disruption illness causes. These resources include a loving, supportive family, a resilient personality, and financial resources. These resources are often helpful but, Maria Luisa faces a barrier that many patients face, as English is not her first language. This makes it more difficult for her to self-manage, makes her more isolated in a community with few Spanish speakers, and makes her more dependent on her caregiver, her son.  This barrier to communication has contributed to her difficulties managing her health; specifically she has had trouble communicating her difficulty following her diet.

How can we help Maria Luisa live the life she wants to live, maximizing health and happiness, while minimizing the work and disruption caused by illness? One approach that can help Maria Luisa is Minimally Disruptive Medicine.

abuela

Minimally Disruptive Medicine (MDM) is an approach to medicine that seeks to promote patient goals while right-sizing the work of being a patient to each patient context. MDM aims to manage the workload that the pursuit of health imposes upon people by examining that workload in the context of the patient’s life, their goals, and the capacity they have to implement that workload and thus, minimize the disruption medicine causes in a person’s life allowing them to live the life they want to live. 2

Using a MDM approach what can we do for Maria Luisa? How can we create a healthcare plan that fits for her? These are the questions I asked myself after another dietary indiscretion landed her once again hospitalized in the ICU.

Working with her family and healthcare team in Alaska we designed a plan that we thought would better fit Maria Luisa desires and available capacities.

We redesigned the way Maria Luisa organizes her medications, getting rid of the individual pill bottles and replacing them with two large pillboxes; one for her morning medications and one for her evening medications. This change made it easier and safer for Maria Luisa and her caregiver to organize her medications. In addition, Maria Luisa felt that this new system was easier to use and one that she could implement on her own, thus increasing her self-efficacy and leaving her happy and with a renewed feeling of independence.

In addition to reorganizing her medications, we also consulted with a Peruvian dietician to create a diet that not only was good for Maria Luisa, but also allowed her to enjoy eating once more, thus, reducing the chance of a deterioration in her health due to nonadherence to her prescribed diet. To further facilitate this change we mobilized some of Maria Luisa’s financial capacity and hired someone to help her prepare the food on her new diet.

Finally, in order to make her dialysis better fit into her life we arranged to have her dialysis completed at night rather than during the day. This not only allows Maria Luisa to do things she enjoys during the day, but, now she goes to dialysis at 5pm, gets out at 8pm and feels ready to go to bed. With this change Maria Luisa says she feels more rested and finds that her afternoons are more useful (she has started to knit again!) and her great granddaughters are more likely to visit because she is well rested and not exhausted from dialysis. An additional unexpected benefit is that some of the nurses who assist with dialysis in the evening also speak a bit of Spanish, thus giving Maria Luisa someone to talk to in her native language.

We might not have addressed all of Maria Luisa’s workload issues (ej. scheduling/attending appointments, physical activity) but I am sure that these simple changes have and will continue to make a big impact on her life.

I write about my experience with the hope that someday some young medical graduates (like me) will start thinking about “Maria Luisas” and ask themselves the same question I now cannot stop asking. How can we work with patients to co-create goals for care that respect each patients’ context, history, capacity and goals? Clinicians have met patients with similar stories, in similar catch-22s of illness, healthcare, and life. But this is not, for me, like any other story. This is the story of my abuela, who once again, has helped me find, in minimally disruptive medicine, a good answer.

Ana Castaneda-Guarderas MD @amcguarderas
Research Trainee, KER Unit
Unidad de Conocimiento y Evidencia (CONEVID)

Acknowledgments:

Dr. Castaneda would like to thank Michael R. Gionfriddo Pharm.D for his editorial assistance.

References

1. Heller, Joseph. Catch-22.  Simon & Schuster, 1961. Print.
2. Leppin, A. Minimally Disruptive Medicine, at your service. URL: http://minimallydisruptivemedicine.org/2013/08/23/minimally-disruptive-medicine-at-your-service/. August 2013

Can adverse economic circumstances have a negative impact in the glycemic control of patients with diabetes?

Can adverse economic circumstances have a negative impact in the glycemic control of patients with diabetes? Mounting evidence suggests that this may be the case (1, 2). A recently published cross-sectional study identified food insecurity and cost-related medication underuse as unmet basic needs that were independently associated with poor diabetes control (1). Although associations between diabetes-related complications (e.g., lower extremity amputations or acute cardiovascular events) and specific material need insecurities were not investigated in this study, the data presented by Berkowitz and collaborators suggests that patients with diabetes struggling with financial burdens could be particularly vulnerable to this disease and may need a higher use of health care resources (1). Clearly, there are no simple solutions for these social problems that require the implementation of population-based strategies that go well beyond the scope and limits of public health. So, what can we do as clinicians? Certainly activism to end poverty, build prosperity, and advocate for universal health coverage would be welcomed. Also, we can recognize that the principles of minimally disruptive medicine offer opportunities that are particularly valuable in populations with limited financial capacity. Excessively demanding treatment plans in patients with diabetes and other associated chronic comorbidities – that include the use of multiple costly medications and unnecessarily investigations – can lead to the disruption of patients’ wellbeing, poor treatment adherence, and eventually the development of negative outcomes (3). In patients struggling with material need insecurities we should expect some limitations in their capacity, and therefore, it is in this group that health care should be the least disruptive as possible.

Oscar L. Morey-Vargas MD
Endocrinology, Diabetes, and Nutrition Fellow
Mayo Clinic, Rochester

References

  1. Berkowitz SA, Meigs JB, DeWalt D, Seligman HK, Barnard LS, Bright OM, Schow M, Atlas SJ, Wexler DJ. Material Need Insecurities, Control of Diabetes Mellitus, and Use of Health Care Resources: Results of the Measuring Economic Insecurity in Diabetes JAMA Intern Med. 2014 Dec 29. doi: 10.1001/jamainternmed.2014.6888.
  2. Ngo-Metzger Q, Sorkin DH, Billimek J, Greenfield S, Kaplan SH. The effects of financial pressures on adherence and glucose control among racial/ethnically diverse patients with diabetes. J Gen Intern Med. 2012;27(4):432-437.
  3. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009 Aug 11;339:b2803. doi: 10.1136/bmj.b2803.

REPOST: Is healthcare careful? Is it kind? by Dr. John Mandrola

Is healthcare careful? Is it kind?

Research now indicates 50% of middle–aged people live with one chronic disease. Translation: half of middle-aged people are not healthy.(You don’t need a reference there. Just walk out into the world and look around.)

This new normal creates a challenge for caregivers. How will we care for the onslaught of chronic disease?

Surely not with the current model of care. What happens now is that doctors treat diseases–and even “pre-diseases.” We once had diabetes and hypertension and heart failure. We now have pre-diabetes, pre-hypertension and Stage A (no symptoms and no findings) heart failure.

Guidelines statements promote disease-specific numeric measures, such as blood pressure, glucose and cholesterol levels. Patients not at goal get more medication. Then guidelines spawn quality measures, which intensifies already burdensome care. Hit doctors with sticks, feed them carrots, the result is the same: more pills and procedures.

Here is the problem: People are not diseases. Guidelines are context blind. As the burden of healthcare overcomes the capacity (physical, mental, emotional and financial) of the patient, she makes choices of what to do. Said another way: life gets in the way of healthcare. No one wants to spend their life being a patient.

Dr. Victor Montori (@vmontori) is an endocrinologist at Mayo Clinic. His idea for making healthcare more effective is to shun disease-specific context-blind surrogates. Montori and his team have asked us to consider a minimally disruptive approach to healthcare. Quality care in their model happens when patients improve their ability to function–or enjoy life.

Their two new words in healthcare are work and capacity. Minimally disruptive care seeks to decrease the work of care while increasing the capacity of the patient to do the work.

This is not health policy gibberish. Think about it. We are losing the fight against chronic disease. When something is not working, you change the strategy.

Montori’s suggestions are simple: 1) Start by using the right language.Assess the burden of care and think about the patient’s capacity to do all that we prescribe. 2) Guideline writers must add context, otherwise guidelines will become irrelevant. 3) Use shared-decision making. If you have to treat 140 patients with a statin medication to prevent one heart attack (meaning 139 patients take the drug without benefit), it makes sense to incorporate the patient’s goals. 4.) Think about deprescribing,not just in the elderly, but in relation to decreasing the work of healthcare.

Here is a 45-minute lecture Montori gave to a group of primary care doctors. About half-way through the video, he describes a patient named John. John is real life. And once you hear John’s story, it is impossible to think we are on the right path.

NAPCRG Plenary on Minimally Disruptive Medicine – audio is out!

The North America Primary Care Research Group hosts the foremost international annual conference on primary care research. In 2014, it took place in New York City on November 21-25. It started with a plenary by Victor Montori on Minimally Disruptive Medicine. The audio for that plenary has now been released and can be enjoyed on the Soundcloud website or App. The audience resonated with the message of Minimally Disruptive Medicine. A blog Victor penned discussed the upcoming talk as focused on a careful and kind approach to healthcare. The audience gave these ideas a standing ovation, but not all found the solution complete: Martin Roland for one thinks more primary care research to address the enormous needs of patients with multiple chronic conditions is needed. And that is what we are trying to do.

Comment on: Engaging Patients in Safety: Naughty or Nice? by Michael Millenson

Minimally disruptive medicine seeks to respect patients above all else, but what that means in practice is complex. Indeed, in its efforts to reduce the healthcare footprint on patients’ lives, MDM tries not to overburden patients with excessive healthcare tasks and responsibilities. At the same time, MDM aims to promote patients’ capacity to make decisions, take ownership of their health, and to do the things that bring meaning to their lives. Health care is serving patients well when it seeks to truly empower, engage, and activate patients to do the things that bring meaning to their lives. This terminology can be hijacked, however, to justify a transfer of work and responsibility to patients that primarily serves only the goals of health care itself. Such a maneuver is a disrespectful imposition on patients.

Michael Millenson is the president of Health Quality Advisors LLC, a leading thinker on patient-centeredness and quality in health care, and a valued member of the Minimally Disruptive Medicine Workgroup. His recent holiday-themed blogpost, Engaging Patients in Safety: Naughty or Nice?, is a thoughtful illustration of the ways in which efforts taken in the name of patient engagement can sometimes miss the mark.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

The process of engaging patients in making care safer should be seen through a Santa Claus lens. It can be naughty or nice, depending not on good intentions but on the specifics of the intervention.

True engagement is collaboration; the rest deserves a lump of coal in the stocking.

Seeking True Empowerment

The key question is whether patients are being truly empowered or whether providers are passing the buck, placing on patients’ shoulders responsibilities that rightfully should reside elsewhere. It’s like those old Westerns where the sheriff hands rifles to a bunch of ranchers and tells them to form up a posse and ride with him after the bad guy. While it’s nice to be a valued part of the justice system, there’s a reason the local citizenry finally coughed up enough cash to pay for a real police force.

TO READ THE REST OF THE BLOG POST, GO TO: http://www.engagingpatients.org/patient-and-family-engagement-2/engaging-patients-safety-naughty-nice/

REPOST: Is Burden Of Treatment A Barometer Of Quality Of Care? from Carl May

Frances Mair and I have an Editorial in this week’s British Medical Journal that sets out some of the key problems around Burden of Treatment and multi-morbidity. That the BMJ should commission this editorial from us shows that the idea of Burden of Treatment is getting traction across the healthcare economy. And why shouldn’t it? The bug issue here is patient and carer workload – something that we know much less about than we should. The editorial comes hot on the heels of an important meeting sponsored jointly by the National Institute of Health Research and the Royal College of General Practitioners that sought to develop a strong research agenda on multi-morbidity. The key message that I took away from that meeting was that there was a real risk of turning multi-morbidity into a kind of new disease in itself – in the way that we often now hear chronic illness and long-term conditions spoken about in a quite undifferentiated way. In fact, the big problems here are at a system level, and they’re the problems that Frances and I discuss in our editorial. I was a plenary speaker at the RCGP NIHR Multimorbidity meeting and I’ve embedded my powerpoint presentation below.

Carl May’s blog

Multimorbidity, Burden of Treatment and Intervention Design from Carl May

Minimally disruptive medicine and the mechanisms of social networks to connect and mobilise resources outside of medical care

From:  Anne Rogers,  Ivo Vassilev,  and Anne Kenney; University of Southhampton

The aspiration of minimally disruptive medicine advocates is  to progress the proliferation of  care and management that fit with patients’ goals and contexts that people can make a ‘normal’ part of their life. The power and capacity of personal networks in this equation potentially  takes  this aspiration beyond  the confines of traditional medical and health care settings. A  trial  and a  recently published systematic review of likely mechanisms  and capacities of networks provides some  support for  continuing this line of thinking.

The BRIGHT trial just published http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0109135 was predicated on the development of a programme of work incorporating the notion that social networks are implicated in providing support outside formal health services through the mobilization of resources and interaction with aspects of everyday life (for example, home, family, work, leisure and friends).   The intervention centred on providing patient information incorporating lay-experiential knowledge alongside clinical information and broadening support addressing social and and personal needs through linking patients’ needs and preferences to local community resources. This trial produced positive effects in so far as the intervention was  associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for those individuals in the intervention group.   However as with many trials, this takes us only so far.

Key questions remain about identifying the mechanisms of  networks which are relevant here.  We have considered this in a systematic meta-synthesis exploring  network mechanisms as located within a broader social context shaping practices, behaviours, and the multiplicity of functions and roles that network members fulfil.     http://www.biomedcentral.com/1471-2458/14/719.    It seems that 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These elements translate into line of argument synthesis in which three network mechanisms were identified. network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in chronic illness management (CIM), and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support. In future then minimally disruptive medicine  might turn its attention to focus a bit more on: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships in CIM environments and maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.

See our continuing  work  on networks in the NIHR CLAHRC Wessex, EU-GENIE (European Generating Engagement in Networks Involvement), and EU-WISE

http://www.clahrc-wessex.nihr.ac.uk/

http://eu-genie.ohdev.co.uk/eng/

http://eu-wise.com/

Patient Capacity and Constraints in the Experience of Chronic Disease: A systematic review of the qualitative literature protocol

“We are currently undertaking this systematic review of the qualitative literature to gain a more comprehensive view of the elements that make up patient capacity and its constraints. This work underpins the current development of a clinical encounter communication tool to make patient capacity visible and useful in the co-creation of treatment plans (the Instrument for Patient Capacity Assessment, ICAN). We often catalog our systematic reviews in PROSPERO, however, due to the qualitative nature of this project we were unable to do so. We are currently screening full texts, and look forward to sharing this with the Minimally Disruptive Medicine Community upon its completion.” – Kasey Boehmer

Patient Capacity and Constraints in the Experience of Chronic Disease: A systematic review of the qualitative literature protocol

Background

Capacity refers to the available abilities and resources the patient can mobilize to address work demands, in healthcare and in life. Limitations to capacity impact the patient’s “ability or readiness to do work.” 1

For patients, particularly those with chronic conditions, capacity is a finite construct that they must use to access and use healthcare and to enact their self-care, that is, to shoulder the workload of their treatment. This capacity is the same set of available abilities and resources that is used to enact their life roles, such as taking a child to daycare, and relate to their families, friends, and colleagues.

This capacity can be limited by aspects of poor or worsening health, the “burden of illness,” or by limited capabilities resulting from the patient’s life context. Through past research and clinical experience, our research unit has developed a working list of six domains of patient capacity: Personal, Physical, Mental, Social, Financial, and Environmental. Domains of capacity which are limited by the burden of illness are mental and physical capacity. Those that can be limited by scarcity, or difficulties in life context, are personal (busy, burnout, literacy), social (isolation), financial (poverty), and environmental (far distances, poor roads, limited communications).

Within each domain of capacity, the set of resources or abilities can be limited by specific factors that must be overcome. In health care, we can think of these limiters manifesting as barriers to the patient’s ability or resources to access and use health care services or to enact self-care practices. This relationship between a patient’s capacity to shoulder workload and its impact upon patients’ ability to access and use healthcare or enact self-care is described in the Cumulative Complexity Model (CuCoM). While strides have been made to characterize the patient’s workload as manifested in their burden of treatment,2 as well as to create a measure to capture burden of treatment,3 4 a comprehensive view of patient capacity is lacking from the literature.

Aims

The primary aim of this review will be to identify qualitative descriptions of deficits in capacity or barriers that patients and experience in their lives that affect their ability to access or use healthcare or to enact self-care.

The purpose of this review is to inform the development of a tool for the clinical encounter that creates a conversation that quickly elicits the deficits in capacity that a patient with one or more chronic conditions faces in their daily lives to inform the development and modification of treatment plans. We do not anticipate that this review will create an exhaustive list of every domain and sub-domain of capacity that can be activated or mobilized, but yet that it will illuminate the practical deficits in capacity that must be considered between patients with chronic conditions, their caregivers, and clinicians.

Methods

To answer this question, we will conduct a systematic review of the qualitative literature from four databases (MEDLINE, EMBASE, Psychinfo, and CINAHL) and an environmental scan. The conduct of this review will be built upon much of the methodology described previously by Gallacher et al., for conducting qualitative systematic reviews of a novel construct, treatment burden.5

Our approach will be grounded in the Cumulative Complexity Model, and we will organize our findings based upon the six domains of capacity our research team has identified. Any barriers that we identify that fit outside the bounds of any of the six domains will be grouped into an “other” category, and will be analyzed separately to understand their fit with the model and its component domains.

Our first step will be to conduct scoping searches of the qualitative literature in order to pick up key articles that fit our inclusion criteria; this process will identify papers and key terms, with which reviewers should be familiar. As described previously by Gallacher et al., the scoping search includes ‘berry picking,’ in which groups of papers are discovered together, a preliminary search of databases, use of the ‘related articles’ function in PubMed, and consultation with experts in the field.5

We will include papers published in or after the year 2000 and use qualitative methodology through direct patient and/or caregiver contact through interactions such as in-depth interviews, focus groups, or ethnographic observations. Papers will be excluded if their primary unit of analysis is not the patient (i.e., patient-provider team, family, caregiver as a surrogate for the patient). We will exclude papers that use strictly quantitative methodology to answer their research question. Papers that are mixed methods will be included if their results presented give priority to the qualitative patient experience and seeks to triangulate the quantitative and qualitative data.6 Mixed methods papers that give priority to quantitative design and reporting, particularly following the instrument design model or the data transformation model will be excluded.6

We will include articles about patients’ experience with one or more chronic conditions. We will define chronic conditions according to the AHRQ definition:  a condition “that lasts 12 months or more and either limits self-care or independent living or requires ongoing medical intervention.” We will also include studies that focus not specifically on experience with a specific condition but also the experience of living with comorbidities and/or multimorbidity.

While papers will be excluded if the patient is not the primary unit of analysis, will account for in our analysis both patient accounts of barriers related to accessing and using healthcare or enacting self-care and that of their “informal caregivers,” where they appear in the included selection. By informal caregivers, we intend to capture people that interact with the patient regularly to assist with their care or activities of daily living, and are not paid for this role. Most often, the role of an informal caregiver is played by a spouse, family member, or friend.

We will include papers that discuss barriers the patient experience accessing and using health care; access and use includes both the availability of the services as well as the ability to realize the use of available services when it is needed or desired.7 We will also be looking to synthesize papers that discuss self-care activities required by the patient for the management of one or more of their chronic conditions or for the management of their overall health and wellness in the context of living with chronic conditions. These include, but are not limited to: activities that promote physical and psychological health, engaging with healthcare providers and adherence, monitoring and decision making.8 We will interpret barriers to mean any part of the patient experience that delay, prevent, or minimize their ability to access or use healthcare or enact self-care.

See appendix for full search strategy.

Screening

Papers will be screened in three stages: 1) after the initial search to review titles which will be retained; 2) abstract screening; and 3) full text screening. In each of these stages, each paper will be screened independently by two reviewers; all disagreements will be resolved by a third party. Papers will be excluded only if the two reviewers exclude for the same reason; all others will be sent to the third party for the final decision.

Data extraction

Data will be extracted using Distiller SR. We will extract at what time point in the patients’ disease trajectory the data were collected (i.e., at onset, treatment initiation, after living with the disease for specified period, etc.), the research question, theoretical frameworks used, sampling procedures, data collection method, data analysis method, overall conclusion of the study, limitations, and conflicts of interest.

Quality Appraisal

During the data extraction phase, we will also conduct a quality appraisal. Because qualitative research can be a broad and complex set of literature, and the methods for its evaluation diverse, we have selected a quality appraisal system previously published.9 This appraisal is a set of 16 questions that can be answered quickly on a 1 – 7 scale and covers clarity of research question, sampling, and methods; analytical practices such as iteration and grounding; reporting practices such as disclosure of internal processes and investigators’ frameworks; and impact on readers, participants, and theory. The quality appraisal will inform our analysis and discussion, rather than to classify or exclude papers.

Data Analysis

After full text screening and data extraction, PDFs will be imported into Nvivo 10. We will use three analysis techniques for metasynthesis of included studies: event timeline (relation to onset/diagnosis and the specific work trying to be accomplished in that point), Imported Concepts (not coming from the data but related and used to provide synthesis), Taxonomic Analysis (extraction of key findings and coding the relationships between components). If and where appropriate, we will provide a metasummary of the count of the occurrence of domains of capacity.

Results and Discussion sections will then be coded in a first round to import concepts from CuCoM, and those that identify descriptions of capacity deficits and barriers that patients encounter or must overcome when they attempt to access or use health care or enact their self-care. The initial round of coding will also import the capacity domains: Physical, Mental, Personal, Social, Financial, and Environmental. An additional coding category of “other” will be included to ensure that barriers that patients encounter but do not fit as a deficit in a specific domain are not excluded, but instead explored further. Finally, we will import the concept of “lifespace,” i.e., where in the patient’s life are they encountering these barriers (home, office, errands, healthcare, etc). The last concept will be particularly important in bringing forth capacity barriers that occur outside the healthcare lifespace for patients.

While CuCom will guide our underlying analysis, there is a lack of comprehensive understanding of patient capacity in the literature. Furthermore, how capacity operationalizes itself in the lives of patients and within the window of the clinical encounter is unclear. Our taxonomic analysis is intended to provide insight into some of these underlying questions for the development of our communication tool. We will conduct a second round of coding to examine the relationships between the imported concepts (CuCoM and capacity domains) within papers, as well as broader links between findings within all included papers.

Finally, we will attempt to create an event timeline of where in relation to diagnosis of a condition (or conditions) patients experience their barriers. Studies that are not specific in this regard will not be plotted. Our purpose of this part of the analysis is underpinned by our understanding of the Normalization Process Theory, and how patients normalize work that they do for their treatment.10 However, we do not understand precisely how patient capacity affects their ability to normalize treatment, and a visual appraisal of where this occurs may help further our understanding.

Bibliography

  1. Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol 2012;65(10):1041-51.
  2. Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm D, Poplau S, et al. Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Prefer Adherence 2014;8:339-51.
  3. Eton DT, Elraiyah TA, Yost KJ, Ridgeway JL, Johnson A, Egginton JS, et al. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Relat Outcome Meas 2013;4:7-20.
  4. Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas 2012;3:39-49.
  5. Gallacher K, Jani B, Morrison D, Macdonald S, Blane D, Erwin P, et al. Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes – methodological challenges and solutions. BMC Med Res Methodol 2013;13:10.
  6. Creswell JW, Fetters MD, Ivankova NV. Designing a mixed methods study in primary care. Ann Fam Med 2004;2(1):7-12.
  7. Gulliford M, Figueroa-Munoz J, Morgan M, Hughes D, Gibson B, Beech R, et al. What does ‘access to health care’ mean? J Health Serv Res Policy 2002;7(3):186-8.
  8. Bayliss EA, Steiner JF, Fernald DH, Crane LA, Main DS. Descriptions of barriers to self-care by persons with comorbid chronic diseases. Ann Fam Med 2003;1(1):15-21.
  9. Stiles WB. Evaluating Qualitative Research. Evid Based Mental Health 1999;2:99-101.
  10. Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med 2011;9(3):235-43.

Appendix: Search Strategies

MEDLINE

  1. *kidney failure, chronic/ or *”end-stage renal disease”/ or *”end-stage kidney disease”/ or *esrd/ or *eskd/ or *hemodialysis/ or (kidney failure, chronic or “end-stage renal disease” or “end-stage kidney disease” or esrd or eskd or hemodialysis).ti.
  2. exp *diabetes/ or *diabet*/ or (diabetes or diabet*).ti.
  3. exp *Heart Failure/
  4. 3 or “cardiac failure”.ti. or “heart failure”.ti.
  5. exp *neoplasms/ or cancer*.ti.
  6. exp *cognition disorders/ or exp *dementia/ or dement*.ti. or alzheimer*.ti. or (cognitive* adj3 impair*).ti.
  7. *hypertension/ or “high blood pressure”.ti. or hyperten*.ti.
  8. exp *schizophrenia/ or schizophren*.ti.
  9. *autism spectrum disorders/ or autism*.ti. or autistic*.ti.
  10. exp *Substance-Related Disorders/
  11. 10 or (substance adj abuse*).ti. or alcoholi*.ti.
  12. exp *Hyperlipidemias/
  13. 12 or hyperlipid*.ti. or hypercholesterol*.ti.
  14. exp *arrhythmias, cardiac/ or exp *coronary disease/ or exp *myocardial infarction/
  15. 14 or coronary.ti. or lvad*.mp. or *heart assist devices/ or “assist device*”.mp. or arrhythmia*.ti. or fibrillation*.ti. or tachycardia*.ti. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  16. depress*.ti. or exp *depression/ or exp *depressive disorders/
  17. exp *osteoporosis/ or osteopor*.ti.
  18. exp *arthritis/ or arthrit*.ti. or osteoarthr*.ti.
  19. exp *HIV Infections/
  20. 19 or aids.ti. or hiv.ti. or “acquired immunodeficien*”.ti.
  21. exp *hepatitis/ or hepatitis*.ti.
  22. *stroke/ or stroke*.ti. or “cerebrovascular accident*”.ti. or ((cerebral or intracranial) adj3 (thrombo* or infarct* or hemorrhag*)).ti.
  23. 1 and (2 or 4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  24. 2 and (4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  25. 4 and (5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  26. 5 and (6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  27. 6 and (7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  28. 7 and (8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  29. 8 and (9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  30. 9 and (11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  31. 11 and (13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  32. 13 and (15 or 16 or 17 or 18 or 20 or 21 or 22)
  33. 15 and (16 or 17 or 18 or 20 or 21 or 22)
  34. 16 and (17 or 18 or 20 or 21 or 22)
  35. 17 and (18 or 20 or 21 or 22)
  36. 18 and (20 or 21 or 22)
  37. 20 and (21 or 22)
  38. 21 and 22
  39. or/28-38
  40. (burden* adj2 (treat* or therap*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  41. Activities of daily living/ or ADL.mp. or health behavior/ or health, knowledge, attitudes, practice/ or lifestyle.mp. or “life style”.mp. or palliat*.mp. or patient education as topic/ or “self care”.mp. or “self manage*”.mp. or barthel*.mp. or disabilit*.mp. or disabled*.mp. or “work capacity”.mp. or “functional disability*”.mp. or “functional limit*”.mp. or fatigue*.mp. or balance*.mp. or falls.mp. or falling.mp. or severity.mp. or falls, accidental/ or “social support”.mp. or supportive.mp. or family.mp. or interpersonal*.mp. or friend*.mp. or companion*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  42. (Mobility or transportation* or driving or walk* or gait or travel*).mp. or automobile driving/ or mobility limitation/ or tasks.mp. or work*.mp. or “job loss”.mp. or “loss of control”.mp. or locus of control/ or adaptation*.mp. or unemploy*.mp. or “self esteem”.mp. or independen*.mp. or dependent.mp. or “life chang*”.mp. or pleasure*.mp. or fear*.mp. or anxious.mp. or anxiety.mp. or leisure*.mp. or medication adherence/ or cope*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  43. coping.mp. or physician-patient relations/ or communicat*.mp. or partnership.mp. or socioeconomic*.mp. or psychosocial*.mp. or attitude*.mp. or acceptance of health care/ or acceptance.mp. or denial.mp. or choice*.mp. or resilien*.mp. or mobiliz*.mp. or mobilis*.mp. or “social conflict*”.mp. or “physical status”.mp. or “physical function*”.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  44. (Depress* or lonely or loneliness or rehabilitat* or “physical therapy” or stress* or disrupt* or recover* or challeng* or negotiat* or goal* or safe or unsafe or neighborhood or “self efficacy” or social* or isolat*).mp. or social isolation/ or costs.mp. or cost of illness/ or “drug costs”.mp. or insurance.mp. or insured.mp. or schedule*.mp. or appointment*.mp. or satisfaction.mp. or satisfy*.mp. or dissatisf*.mp. or suffer*.mp. or delegate*.mp. or qol.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  45. (“quality of life” or “well-being” or dysfunction* or community* or work or intimacy or intimate or emotion* or mood* or unmet or preference* or participat* or “side effect*” or emotion*).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  46. Continuity of patient care/ or accessib*.mp. or needs.mp. or autonomy.mp. or (patient adj2 (care or experience* or understand* or expectation* or perspective* or perception* or satisfaction)).mp. or motivat*.mp. or incentiv*.mp. or disincentive*.mp. or compliant.mp. or noncompliant*.mp. or adheren*.mp. or nonadheren*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  47. (barrier* or disparit* or language* or education* or experiences or criminal or crime or (low* adj income*) or burden* or disjoint* or access).mp. or health care accessibility/ or distress.mp. or frustrat*.mp. or knowledge*.mp. or beliefs.mp. or expens*.mp. or “out of pocket”.mp. or spending.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  48. (multimorbid* or comorbid* or morbidities).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  49. (multiple adj3 (chronic or illness* or morbid* or disease* or condition*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  50. ((multi or co) adj morbid*).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  51. “more chronic”.mp.
  52. or/48-51
  53. (“action research” or ethnograph* or ethmolog* or “grounded theory” or (qualitative adj2 (study or studies or data or evidence or synthesis or investigation)) or naturalistic or phenomenolog* or ((semistructured or motivational or structured) adj interview*) or “focus group*” or narrative* or narratolog* or “discourse analysis” or “content analysis” or “constant compar*” or “field stud*” or ((purposive or cluster* or snowball or convenience) adj2 sampl*) or (self adj report*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  54. “data saturation”.mp. or qualitative research/ or naturalistic.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  55. (audiotap* or videotap* or audiorecord* or videorecord*).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  56. ((audio or video) adj (record* or tape* or taping)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  57. or/53-56
  58. 39 and 57
  59. or/40-47
  60. 52 and chronic*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  61. 57 and 60
  62. (58 or 61) and (59 or burden*.mp. or complex*.mp. or theme*.mp.) [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  63. limit 62 to (english language and yr=”2000 – 2014″)
  64. 52 and 63

EMBASE

  1. *kidney failure, chronic/ or *”end-stage renal disease”/ or *”end-stage kidney disease”/ or *esrd/ or *eskd/ or *hemodialysis/ or (kidney failure, chronic or “end-stage renal disease” or “end-stage kidney disease” or esrd or eskd or hemodialysis).ti.
  2. exp *diabetes/ or *diabet*/ or (diabetes or diabet*).ti.
  3. exp *Heart Failure/
  4. 3 or “cardiac failure”.ti. or “heart failure”.ti.
  5. exp *neoplasms/ or cancer*.ti.
  6. exp *cognition disorders/ or exp *dementia/ or dement*.ti. or alzheimer*.ti. or (cognitive* adj3 impair*).ti.
  7. *hypertension/ or “high blood pressure”.ti. or hyperten*.ti.
  8. exp *schizophrenia/ or schizophren*.ti.
  9. *autism spectrum disorders/ or autism*.ti. or autistic*.ti.
  10. exp *Substance-Related Disorders/
  11. 10 or (substance adj abuse*).ti. or alcoholi*.ti.
  12. exp *Hyperlipidemias/
  13. 12 or hyperlipid*.ti. or hypercholesterol*.ti.
  14. exp *arrhythmias, cardiac/ or exp *coronary disease/ or exp *myocardial infarction/
  15. 14 or coronary.ti. or lvad*.mp. or *heart assist devices/ or “assist device*”.mp. or arrhythmia*.ti. or fibrillation*.ti. or tachycardia*.ti. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  16. depress*.ti. or exp *depression/ or exp *depressive disorders/
  17. exp *osteoporosis/ or osteopor*.ti.
  18. exp *arthritis/ or arthrit*.ti. or osteoarthr*.ti.
  19. exp *HIV Infections/
  20. 19 or aids.ti. or hiv.ti. or “acquired immunodeficien*”.ti.
  21. exp *hepatitis/ or hepatitis*.ti.
  22. *stroke/ or stroke*.ti. or “cerebrovascular accident*”.ti. or ((cerebral or intracranial) adj3 (thrombo* or infarct* or hemorrhag*)).ti.
  23. 1 and (2 or 4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  24. 2 and (4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  25. 4 and (5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  26. 5 and (6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  27. 6 and (7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  28. 7 and (8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  29. 8 and (9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  30. 9 and (11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  31. 11 and (13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  32. 13 and (15 or 16 or 17 or 18 or 20 or 21 or 22)
  33. 15 and (16 or 17 or 18 or 20 or 21 or 22)
  34. 16 and (17 or 18 or 20 or 21 or 22)
  35. 17 and (18 or 20 or 21 or 22)
  36. 18 and (20 or 21 or 22)
  37. 20 and (21 or 22)
  38. 21 and 22
  39. or/28-38
  40. (burden* adj2 (treat* or therap*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  41. Activities of daily living/ or ADL.mp. or health behavior/ or health, knowledge, attitudes, practice/ or lifestyle.mp. or “life style”.mp. or palliat*.mp. or patient education as topic/ or “self care”.mp. or “self manage*”.mp. or barthel*.mp. or disabilit*.mp. or disabled*.mp. or “work capacity”.mp. or “functional disability*”.mp. or “functional limit*”.mp. or fatigue*.mp. or balance*.mp. or falls.mp. or falling.mp. or severity.mp. or falls, accidental/ or “social support”.mp. or supportive.mp. or family.mp. or interpersonal*.mp. or friend*.mp. or companion*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  42. (Mobility or transportation* or driving or walk* or gait or travel*).mp. or automobile driving/ or mobility limitation/ or tasks.mp. or work*.mp. or “job loss”.mp. or “loss of control”.mp. or locus of control/ or adaptation*.mp. or unemploy*.mp. or “self esteem”.mp. or independen*.mp. or dependent.mp. or “life chang*”.mp. or pleasure*.mp. or fear*.mp. or anxious.mp. or anxiety.mp. or leisure*.mp. or medication adherence/ or cope*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  43. coping.mp. or physician-patient relations/ or communicat*.mp. or partnership.mp. or socioeconomic*.mp. or psychosocial*.mp. or attitude*.mp. or acceptance of health care/ or acceptance.mp. or denial.mp. or choice*.mp. or resilien*.mp. or mobiliz*.mp. or mobilis*.mp. or “social conflict*”.mp. or “physical status”.mp. or “physical function*”.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  44. (Depress* or lonely or loneliness or rehabilitat* or “physical therapy” or stress* or disrupt* or recover* or challeng* or negotiat* or goal* or safe or unsafe or neighborhood or “self efficacy” or social* or isolat*).mp. or social isolation/ or costs.mp. or cost of illness/ or “drug costs”.mp. or insurance.mp. or insured.mp. or schedule*.mp. or appointment*.mp. or satisfaction.mp. or satisfy*.mp. or dissatisf*.mp. or suffer*.mp. or delegate*.mp. or qol.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  45. (“quality of life” or “well-being” or dysfunction* or community* or work or intimacy or intimate or emotion* or mood* or unmet or preference* or participat* or “side effect*” or emotion*).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  46. Continuity of patient care/ or accessib*.mp. or needs.mp. or autonomy.mp. or (patient adj2 (care or experience* or understand* or expectation* or perspective* or perception* or satisfaction)).mp. or motivat*.mp. or incentiv*.mp. or disincentive*.mp. or compliant.mp. or noncompliant*.mp. or adheren*.mp. or nonadheren*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  47. (barrier* or disparit* or language* or education* or experiences or criminal or crime or (low* adj income*) or burden* or disjoint* or access).mp. or health care accessibility/ or distress.mp. or frustrat*.mp. or knowledge*.mp. or beliefs.mp. or expens*.mp. or “out of pocket”.mp. or spending.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  48. (multimorbid* or comorbid* or morbidities).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  49. (multiple adj3 (chronic or illness* or morbid* or disease* or condition*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  50. ((multi or co) adj morbid*).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  51. “more chronic”.mp.
  52. or/48-51
  53. (“action research” or ethnograph* or ethmolog* or “grounded theory” or (qualitative adj2 (study or studies or data or evidence or synthesis or investigation)) or naturalistic or phenomenolog* or ((semistructured or motivational or structured) adj interview*) or “focus group*” or narrative* or narratolog* or “discourse analysis” or “content analysis” or “constant compar*” or “field stud*” or ((purposive or cluster* or snowball or convenience) adj2 sampl*) or (self adj report*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  54. “data saturation”.mp. or qualitative research/ or naturalistic.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  55. (audiotap* or videotap* or audiorecord* or videorecord*).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  56. ((audio or video) adj (record* or tape* or taping)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  57. or/53-56
  58. 39 and 57
  59. or/40-47
  60. 52 and chronic*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  61. 57 and 60
  62. (58 or 61) and (59 or burden*.mp. or complex*.mp. or theme*.mp.) [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  63. limit 62 to (english language and yr=”2000 – 2014″)
  64. 52 and 63
  65. 64 and (interview* and (“focus group” or qualitative* or sampl* or theme* or thematic*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  66. information processing/ or content analysis/ or data synthesis/ or discourse analysis/ or thematic analysis/
  67. 64 and 66
  68. exp interview/
  69. 64 and 68
  70. 64 and expectation/
  71. 64 and (personal experience/ or patient expectation/)
  72. 65 or 67 or 69 or 70 or 71

PsycInfo

  1. qualitative research/ or grounded theory/ or interviews/
  2. exp Life Experiences/ or lived experience.mp.
  3. content analysis/ or discourse analysis/
  4. exp Chronic Illness/
  5. ((multi or multiple) adj3 (chronic* or morbid*)).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]
  6. exp Comorbidity/ or multimorbid*.mp.
  7. or/1-3
  8. 7 and (4 or 5 or 6)
  9. exp Neoplasms/
  10. exp memory disorders/ or exp brain disorders/ or exp cognitive impairment/
  11. exp kidney diseases/
  12. exp diabetes mellitus/
  13. exp heart disorders/
  14. exp schizophrenia/
  15. exp Autism/
  16. exp major depression/
  17. exp Osteoporosis/
  18. exp Hepatitis/
  19. exp Cerebrovascular Accidents/ or exp Cerebral Ischemia/
  20. exp hypertension/
  21. 9 and (10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  22. 10 and (11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  23. 11 and (12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  24. 12 and (13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  25. 13 and (14 or 15 or 16 or 17 or 18 or 19 or 20)
  26. 14 and (15 or 16 or 17 or 18 or 19 or 20)
  27. 15 and (16 or 17 or 18 or 19 or 20)
  28. 16 and (17 or 18 or 19 or 20)
  29. 17 and (18 or 19 or 20)
  30. 18 and (19 or 20)
  31. 19 and 20
  32. or/21-31
  33. 7 and 32
  34. 8 or 33
  35. limit 34 to (english language and yr=”2000 – 2015″)

CINAHL

S18 S11 AND S15 AND S17 Limiters – Published Date: 20000101-20141231; English Language; Peer Reviewed; Research Article; Exclude MEDLINE records; Language: English
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
37
S17 (MH “Patient Compliance+”) Limiters – Published Date: 20000101-20141231; English Language; Peer Reviewed; Research Article; Exclude MEDLINE records; Language: English
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
1,686
S16 S11 AND S15 Limiters – Published Date: 20000101-20141231; English Language; Peer Reviewed; Research Article; Exclude MEDLINE records; Language: English
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
164
S15 S12 OR S13 OR S14 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
153,506
S14 (MH “Health Behavior+”) OR (MH “Health Behavior (Iowa NOC) (Non-Cinahl)+”) OR (MH “Health Promotion+”) OR (MH “Health Seeking Behaviors (NANDA)+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
73,983
S13 (MH “Life Style+”) OR (MH “Life Style, Sedentary”) OR (MH “Life Style Changes”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
100,936
S12 (MH “Altered Activities of Daily Living (NANDA) (Non-Cinahl)+”) OR (MH “Self Care: Activities of Daily Living (Iowa NOC)”) OR (MH “Self-Care: Instrumental Activities of Daily Living (Iowa NOC)”) OR (MH “Activities of Daily Living (Saba CCC)”) OR (MH “Activities of Daily Living Alteration (Saba CCC)”) OR (MH “Instrumental Activities of Daily Living (Saba CCC)”) OR (MH “Instrumental Activities of Daily Living Alteration (Saba CCC)”) OR (MH “Activities of Daily Living+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
29,478
S11 S5 AND S10 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
4,619
S10 S6 OR S7 OR S8 OR S9 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
53,065
S9 (MH “Chronic Disease”) Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
24,451
S8 multimorbid* OR comorbid* OR “co-occurring” Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
29,963
S7 (MH “Comorbidity”) Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
20,417
S6 “multimorbidity” Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
164
S5 S1 OR S2 OR S3 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
152,124
S4 (MH “Cancer Patients”) OR (MH “Cardiac Patients”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
20,726
S3 (MH “Thematic Analysis”) OR (MH “Semantic Analysis”) OR (MH “Content Analysis”) OR (MH “Constant Comparative Method”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
44,547
S2 (MH “Qualitative Studies+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
68,311
S1 (MH “Interviews+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
118,309

Out with self-management support and in with social network involvement?

Is it time to dump the individualism of self- management support and replaces with a focus on social network involvement which expands with need and saves costs?

By Anne Rogers (University of Southampton)

anne_rogers-2

Minimally Disruptive Medicine is described here in earlier entries to this blog as a service-driven approach to care, co-created with patients (as is the best experience at any service), that makes sense for patients and meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences.

Self-care is often seen as part of that aspiration for co-creation with service providers and has been promoted extensively as part of models encouraging better chronic illness management. The predominant vision for building and enacting self- management capacity has tended to be predicated on the fashioning of peoples’ engagement with this agenda through appeals to normative lifestyles and desirable behaviours.

The literature is replete with references to the focus of self management encouraging the “resourceful patient” as one who should accept responsibility. The whole agenda around self management has been accompanied by a proliferation of terms representing an idealized self-managing individual (“empowered,” “autonomous.” “future,” “expert,” “activated,” “wireless,” “co-producer,” or “flat pack patient”) in the pursuit of confident knowledgable patients practicing self management. In line with this there is an almost exclusive focus on individualistic outcomes such as self-efficacy and patient activation.

This perspective has not only generated a set of interventions which have produced an equivocal evidence base for efficacy, but has masked the power of connections and being linked into networks which provide access to the support that people value and engage with as part of everyday life.

Our recent work in this area at the Universities of Southampton and Manchester indicates that current ways and assumptions of self-management support need to change.

Social network members and dynamics play an important role in the division of labour and the meeting of needs for those living with a long-term condition. We took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management.

Our key findings:

  • Partners and close family make the highest contributions to supporting self-managment but there is also evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner indicating a degree of substitutability between differently constituted networks and that the level and type of input by different members of a network may change according to circumstances.
  • Pets in networks have unique qualities and are not simply substitutes for human relationships in long-term condition management. Pets contribute mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). Pets mediate relationships for people living with a long-term condition through very weak ties with others in domestic and community settings.
  • The amount of work undertaken by ‘weak ties’ is similar to but less than that of stronger ties. Weaker ties appear more durable and less liable to loss over time than stronger ties. ‘Weak ties’ enable the moral positioning of the self-managing ‘self’ and seem to act on the basis of a strong sense of reciprocity. Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.
  • Our most recent analysisexplored  how people’s social relationships alongside the availability of social capital operate in their local community . Over a one-year period, we found that social involvement with a broad variety of people and groups supports peoples’ own management of their condition and contributes to physical and mental well-being. Evidence of a positive care law was indicated by the fact that Personal networks input was found to expand in accordance with health needs so as to provide assistance in coping. Network support was found to substitute to an extent for formal care and provide substantial savings in traditional service utilisation costs.

We need to recognise the importance of social networks and social involvement and find ways to incorporate such knowledge into future ways of managing long term conditions. Support for self-management which achieves desirable outcomes should be seen less as an individualised set of actions and behaviour and more as a social network phenomenon. Interventions and strategies for chronic illness management require a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long-term illness management.

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Learn more about the work of Dr. Rogers’ and her team here:

http://www.clahrc-wessex.nihr.ac.uk/our-six-research-themes/engagement-with-self-directed-support

http://eu-wise.com/eugenie-the-eu-wise-intervention/

 

 

Minimally Disruptive Medicine in Maine

It was fun to present MDM to our colleagues associated with MaineQualityCounts. They are doing great work and this work clearly resonated with frontline folks. For example, nurses working in the Community Care Teams found it compelling to think of their work as promoting / defending patient capacity. You can review the presentation here and the video here.

It is very clear that capacity that could be deployed to do meaning-making work (spend time with family, pursue interests, support loved ones, achieve goals) will compete favorably with patient capacity vs. work of being a patient that is disconnected from patient goals. In failing, the healthcare system will respond with more work or with disparaging comments about the patient or by firing the patient. This is going to come to a head as a wave of previously underserved people, many with chronic conditions and most with limited capacity for self-care, will encounter health care systems well-oiled to achieve disease-specific performance measures. The solution here is to implement minimally disruptive medicine. It is frustrating to me that we still do not know exactly how to do it, but research grants have been submitted and our team continues to explore best approaches. We need to do more, faster. Our patients deserve it.