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Determining what matters to patients with multiple chronic diseases
Clinical Question
What components of well-being and health are valued by people with multiple chronic diseases?
Bottom line
The goal of medicine, in broad strokes, is to help people live longer, live better, or both. But what does "live better" really mean? This study identified what patients with multiple chronic diseases think are the most important aspects well-being and health: principles (ideals, virtues, and aspirations), relationships with others, comfort and serenity (freedom from pain and anxiety), enjoyable activities, mental and physical abilities, and possessions. Finding out what is really important to patients with chronic illnesses may help us to better match our interventions to their goals. 4
Reference
Study design: Qualitative
Funding: Government
Setting: Outpatient (any)
Synopsis
"Health is more than absence of disease" explains what health isn't; it doesn't really explain what well-being and health are. To investigate this definition, investigators interviewed 31 older patients (mean age 68.7 years) with multiple chronic conditions using a semistructured interview format as part of a 2-hour home visit. To encourage self-reflection, participants were provided with an instant camera at least 1 week before the interview to take up to 10 photos of anything they considered to be important to their well-being and health. The interviews were transcribed and coded by 2 investigators using a grounded theory approach. The result was 6 core domains of personal values, which often overlapped and sometimes conflicted with one another: (1) principles, or beliefs and standards to live by, which included spirituality or aspirations such as maintaining independence; (2) relationships, consisting of social connections with family, friends, and groups; (3) emotions, such as joy, pride (sense of accomplishment), comfort (absence of pain), and serenity; (4) maintaining activities in their everyday lives; (5) maintaining physical and mental abilities; and (6) possessions (personal possessions, but also medications and other health aids that are in their lives). I wonder whether most patients will have the in-the-moment insight to identify what is most important to them during an office visit; having these categories in mind to prompt patients might help them figure it out so we can better direct their care.
Reviewer
Allen F. Shaughnessy, PharmD, MMedEd
Professor of Family Medicine
Tufts University
Boston, MA
Comments
This is a useful and relevant study. I wish there we more like it. The issue is at the core of person centred care and essential if we are to help them set goals toward achieving these things in their lives. Interesting that many of the things they identified are transcendent and not quantifiable. How “unscientific”!!. I can hear many of us thinking “where would i find the time to explore this with a patient. And yet I can think of few other more important factors which should direct our care.
At least patient with chronic spinal painal most have nothing to do ,they have left their work for disability winning about pain drive family and friend away and metal changes anxiety and depression increases chronic pain become the main point , insurance payment stops and they start on CCP and others available resources .
They develop more unspecific pain they want have more test especially MRI , They get upset when find out result is unremarkable.
Same patient may chronic serious disease like COPD CKD but they are not concern about that, I encourage them to socialize and get busy with some activity they can do.
But financial social problems is first thing in their mind.
chronic pain apear to more common and need to studied not by Doctors but by sociologist and solved by social changes.
Right on!
Thank you for this great POEM. It is refreshing to see some qualitative research for a change in an otherwise quantitative EBM dominated landscape. As a profession we can’t afford to lose touch with our patients actual experiences and aspirations.
Good poem
As I have concentrated my practice on people who are suffering from severe chronic pain, I can tell you that the great majority of my patients consider relief from pain to be their number one preoccupation. As most severe chronic pain can be completely or almost completely relieved by treating its cause, I am amazed that my colleagues prefer to simply hide it under a blanket of pain killers rather than looking for a cause and treating it.