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Chronic Disease Management - Science topic

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I am looking for a valid and reliable way to measure the medication/drug use, adherence and interactions to evaluate the efficiency of an intervention to reduce inappropriate polypharmacy. Any ideas or experiences with self-assessment questionnaires that are suitable for (older) patients with chronic diseases?
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We can measure medication use by direct and indirect methods involve patient questionnaires, patient self reports, pill counts, rates of prescription refills, assessment of patient's clinical response, electronic medication monitors, measurement of physiologic markers, or patient diaries.
We can also measure adherence by In some instances, providers might wish to measure adherence directly by measuring the concentration of drug levels in the blood. More commonly used, however, are indirect measures of adherence which include patient questionnaires, pill counts, refill rates, and clinical response.
Drug interaction can be identified by software drug interaction checker(Medscape).
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In recent research (pdf attached is below) we found that patients with a low educational level became adapted to the prosthesis less frequently.
This was a cross-sectional study. The patients were identified by primary healthcare teams.
The inclusion criterion was that these should be patients who underwent major lower-limb amputations of any etiology. Associations between sociodemographic and clinical variables and the adaptation to lower-limb prostheses were assessed.
We examined 149 patients. Adaptation to the prosthesis occurred in 40% (60/149) of them, but only 62% (37/60) of these were using it.
Adaptation occurred more often among male patients (P = 0.017) and among those who had a higher educational level (P = 0.013), with a longer time since amputation (P = 0.049) and when the etiology was trauma (P = 0.003).
The result from logistic regression analysis showed that only patients with low education (P = 0.031) were significantly associated with a lower frequency of adaptation to prostheses.
What's your opinion and experience about this?
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I am working at Cancer Center as we do a lot of amputations and I do agree with you, the lower the education level the less frequency of using the prosthesis.
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I am exploring role of peptides on various chronic diseases management. Nona peptides seems to have some interesting reports. Looking for experts who are working on nona and penta peptides.
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I am skeptical about nutraceutical peptides targeting dipeptidyl peptidase-4 (DP-4) or angiotensin converting enzyme (ACE) for one simple reason: our intestines are good at absorbing dipeptides, but when it comes to tripeptides, they did it poorly. So I would not have a high hope for tripeptides or tetrapeptides.
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While reviewing information on KAP studies on cervical cancer, i noted the use of varied tools/questionnaires (different questions, different number of questions and different scales of scoring), while is limiting the effort to combine these data.
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Dear Dr
There are many studies that dealt with this subject, but you can rely on them in building a new questionnaire that takes into account the community and place of study
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Non-communicable diseases are currently a more critical global epidemic in terms of burden of disease and cost, than most infectious diseases. So I'm wondering about models of utilizing the facilities, labs, consult rooms. providers, community health workers, who have heroically and effectively managed HIV and other infectious diseases, to put more effort toward a more upstream approach to chronic disease management.
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Check out the following:
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Especially those relevant to lower income countries. 
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Click on the article title to read more.: http://onlinelibrary.wiley.com/doi/10.1111/1747-0080.12353/full
Can telehealth methods achieve multifactorial dietary change in adults with chronic disease?  Abstract looks very encouraging.
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navicular syndrome is a chronic degenerative condition of navicular bursa and navicular bone that primarily involves damage to the surface of the bone and the overlying DDFT.
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Dear Mary
Thanks for your attention and for answering my question .
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I'm interested in learning about what happens to people when many of their physical capabilities and stamina, strength are compromised by severe illness, an accident, or mental illness.  What makes it possible for people to move on and become productive and involved in life .... reinvent themselves when they lose many capabilities that they used to have?
I'm looking for a few or several articles relevant to what I'm interested in and/or the names of several health care professionals or academics who are active in this are of research.  I would call it overcoming disability or rediscovering oneself and our skills in a area that can make use of our minds and intellectual skills.
Here's an essay I just wrote about what I have experienced over the last eleven years:
How I Learned To Forgive And Live Again Writing On Google Plus
By Frank Elliott  January 15, 2017
I've became more and more interested in the practice of forgiveness over the past eleven years because several severe chronic illnesses had combined their strengths to overwhelm my way of life.  I had been very strong,  a gifted person in terms of my eye-hand coordination and reflex speed and academic skills,  but became housebound with terrible burning pain.  It took constant work and cooperation with seven or eight medical specialists to even stabilize my conditions.  I was mad, felt persecuted, and each day of existence was like a long, drawn-out execution.  My intense anger and emotional outbursts about how life had so cursed me became the sum of my self-talk.  I realized after living this way for a couple of years that I would need to learn to forgive myself and my diseases to move on.   The last 9 years has been a story of learning to forgive and live peacefully.  Gradually, I picked up my old love of writing and my fury turned toward concentrating on describing the world around me and in me so that other people could learn to understand themselves too.  If I can learn to forgive and live in peace and reach out in love and kindness, so can many, many others.  To do that I had to let go of all the imagined wrongs and the hate, the fury.   The concentration on describing the world of science, nature, physics, astronomy, and developments in the fields of medicine and health care gave me an outlet to the world around me through Google Plus and let the love of others in. 
Gradually, but slowly at first, many people let me into their lives and I let them into mine.   People began to love what I wrote of and how I had become so upbeat and positive.  I began to love myself too because of them.  Gradually I had become a miraculous new being of light.  I would have never imagined that eleven years before.   I've had to slow down and stop my writing and sharing sometimes for many months at a time, but I always start up again when the storm of symptoms subsides or I find a way around it, over it, or under it.  I've given myself that permission to rest and attend to my needs and restore my health. 
I can accept my own weaknesses and frailty now.  I could never do that before.  Severe illness was able to give me many gifts and open many new doors because I learned to slow down, listen to my body, and get help as well as take actions designed to mend myself.   I don't know if I could have learned this or many other lessons that changed my life either if I had not learned to listen.   The truth is that I was forced into it. I was not about me but about a kind of grace.  Life has a kind of grace that invites us to come in and change and learn more deeply about who we are.  I've found we only need to pick up the call and listen.  To me this means heading down the long road of peace building within myself and with others too.
By Frank Elliott about my interest in the Google Plus social networking site.  My Google Plus commentary and posts can be found at this address: https://plus.google.com/108713721375842222592/posts
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The International Federation on Aging (IFG) has excellent resources to draw upon. You could also draw from such resources as the Canadian Frailty Network (CFN), and, the National Initiative on the Care of the Elderly (NICE - Canada). As a brief response - be careful not to classify all aged individuals as the same. Strategies used to address chronic health care conditions vary considerably (as people vary considerably). For example, some choose to maximize whatever health they have left using health promotion strategies. Others (a growing number in fact) pursue complementary and alternative medicine - CAM. This assumes of course that people can take options - not all can. Many, for example, simply cannot afford the strategy to which they wish to pursue. There may also be access issues beyond one's socioeconomic status. 
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Goal is to prove that technology can play a significant role when it comes to improve patient compliance in managing chronic disease management.
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Hi Asif
I am researching the use of biofeedback in swallow rehabilitation - including the impact on patient motivation and compliance. Perhaps we could share useful article references?
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I'm hoping to find a source of data that goes back before the 1940's and I would  be delighted to learn that there are places to look more for international statistics, or comparisons,even, by country.  What sort of data are available?   I'm especially looking for data on diseases such as diabetes, heart disease, cancer, autoimmune disease and neurodegenerative diseases like Alzheimers and Parkinson's disease.  Does anyone know of some good resources?  Many thanks!
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The international diabetes federation reports diabetes data by country
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Using Africa as a case study
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I suggest you look at the WHO website for information on country framework for action across sectors
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Association Between Knowledge and Medication Adherence In Patients With Type 2 Diabetes Mellitus In Pakistan
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Clarity is a useful thing - if you needed a reprint, you should have explicitly stated so in the first place and included the full reference!
If it is not a copyright protected material and I have access to it, I'll be happy to send you the reprint. 
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I'm interested in measuring livelihood index in a community. I need a valid livelihood measurement index/methodology. Can anybody help me, please?
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Hi Makuachukwa,
FAO developed some indexes to measuring rural livelihoods. The methodologies are;
·         Household and Livelihoods Security (HLS) Approach,
·         Household Economy Approach (HEA) approach
·         Economic/financial Security Analysis Approach,
·         Social Security Analysis Approach,
·         Vulnerable Group Profiling approach
·         Integrated Food Security and living standards Analysis System.
These approaches have been extensively used to measure impacts of projects on the livelihoods of the rural poor. Please read them and see. I hope this helps
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Why Vitamin-D has been aggressively marketed in different diseases such as migraine, Ischemic stroke, Cardiovascular disease, Diabetes, Chronic obstructive pulmonary disease?
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Vitamin D deficiency only causes bone disease; Rickets / osteopaenia.
Nevertheless vitamin D deficiency has been associated with many diseases including autoimmunity, diabetes and neoplasia however it is fair to say that treatment with vitamin D of any of these diseases at best only slows their progress. This can be very important where we don't have any better prevention; for example meta-analysis has suggested that giving vitamin D to siblings of type 1 diabetics reduces progression by 30% (Nutrients. 2013 Sep 12;5(9):3551-62).
We know that these non-bone diseases aren't caused by vitamin D deficiency and are caused by other factors (eg HLA susceptibility / viral triggers / obesity / insulin resistance / mutagens) however vitamin D generally worsens progression as we have shown for diabetes (Diabetes Care. 2011 May;34(5):1133-8), metabolic syndrome (J Clin Endocrinol Metab. 2012 Jun;97(6):1953-61) and renal disease (Am J Kidney Dis. 2013 Jul;62(1):58-66). This ubiquitous role of vitamin D may be related to the fact that  virtually every cell in the body had a vitamin D receptor (especially immune system) and this may play a role in intracellular communications like intracellular calcium. Vitamin D affects insulin release by islets and insulin sensitivity in muscle.
As mentioned above by Tausif and Michaela, vitamin D treatment is very accessible. Australia makes most of the world's supply of Vit D3 by irradiating lanolin - which is incidentally how 'furry' animals naturally make vitamin D since the light doesn't get to their skin. We had a few advertisements for Vitamin D for bone disease but they are becoming rarer with low cost alternatives entering the market. Vitamin D treatment is also far safer than most people think because if taken in excess, the body simply making the active 1,25 OH form.
I think the main controversy is around vitamin D measurement, as it remains an expensive and difficult assay and this is largely because of the difficulty in separating vitamin D from its binding protein. Clinical assessment for vitamin D deficiency should be easy (ie skin darkness +/- low exposure to sunlight) but blood tests are always easier and sometimes more reliable. I wonder how the debate about testing (and treatment) would change if vitamin D testing was a cheap as glucose?
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I am looking to analyze the psychosocial, cultural, and coping for patients with chronic disease. What are good research studies on the effectiveness of interventionists who can improve a paitents well being by allowing them to communicate their problems.  
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Hello
Thank you for the interest carried in this current mobilizing the expérientiel knowledge of the patients. There are still to my knowledge no studies psychological in oneself, however, we used tools of occupational psychology (1) which allowed us to measure the impact of the quality of life in the work of the healthcare professionals and the involved administrators. As for the patients, an article was published in the review Plos one (2)
(1) DCPP, 201DCPP, 2014, Programme partenaires de soins, rapport d’étape (2011-2014) et perspectives, Direction collaboration et partenariat patient du centre de pédagogie appliquée aux sciences de la santé, Faculté de médecine, Université de Montréal. Accessible en ligne à l’adresse Internet : http://medecine.umontreal.ca/doc/PPS_Rapport_2011-2013.pdf, (Dernière consultation le 23/07/2015).
(2) Pomey M.-P., Ghadiri D. P., Karazivan P., Fernandez N., Clavet N. (2015), «  Patients as partners : a qualitative study of patients engagement in their health care : patients as Partner in their health care », Plos one, PLOS ONE | DOI:10.1371/journal.pone.0122499 April 9, 2015.
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I would like to know if abdominal pain is the identifying  symptom present for people with porphyria or can they have other symptoms and not abdominal involvement at all, such as psychosis. thanks
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As you know, the acute attack in acute porphyrias (AP), that may also occur in mixed porphyrias (porphyria variegata and hereditary coproporphyria) usually consist in abdominal diffuse or localised pain associate to constipation and vomiting (the so-called Günther triad). These manifestations appear as an acute abdomen with leucocytosis, sometimes mild fever, but without neither defence nor muscle contracture of the abdominal wall.
Neurological manifestations could be very pleomorphic: polyneuritis, peripheral or cranial nerves paralysis, seizures and rarely a very severe complication respiratory palsy.
Psychiatric manifestations may be extremely variable, from changes of character to dementia crisis (Korsakoff' syndrome, delirium tremens, confusion, coma…).
These are the classical well known manifestations. As a curious anecdote I remember that long time ago I read a paper referring as possible first manifestation of acute porphyria the sudden petition of divorce…(of course the percentage of AP in divorce petition's would really be exceptionally low…!!).
In any case the anecdote is useful to answer your specific question. Yes, it is possible that a patient with AP do not present abdominal pain syndrome but other manifestations (neurological, psychiatric..).
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I am looking for tools used to measure conflict effect on chronic diseases in general.
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Dear Nour,
Check these papers out:
Using Insights From Behavioral Economics and Social Psychology to Help Patients Manage Chronic Diseases. Braden K. Mogler, Suzanne B. Shu, Craig R. Fox, Noah J. Goldstein, Ronald G. Victor, José J. Escarce, Martin F. Shapiro
J Gen Intern Med. 2013 May; 28(5): 711–718.
Psychological Stress in Childhood and Susceptibility to the Chronic Diseases of Aging: Moving Towards a Model of Behavioral and Biological Mechanisms
Gregory E. Miller, Edith Chen, Karen J. Parker. Psychol Bull. 2011 November; 137(6): 959–997. 
Preterm Birth and Its Long-Term Effects: Methylation to Mechanisms
Sasha E. Parets, Carrie E. Bedient, Ramkumar Menon, Alicia K. Smith
Biology (Basel) 2014 September; 3(3): 498–513.
Beyond Obesity and Lifestyle: A Review of 21st Century Chronic Disease Determinants. Garry Egger, John Dixon Biomed Res Int. 2014; 2014: 731685.
Health-Related Quality of Life in Pediatric Liver Transplant Recipients Compared to Other Chronic Disease Groups
Christine A Limbers, et al. Pediatr Transplant. 2011 May; 15(3): 245–253.
Integrating Co-Morbid Depression and Chronic Physical Disease Management: Identifying and Resolving Failures in Self-Regulation
Jerusha B. Detweiler-Bedell et al. Clin Psychol Rev. 2008 December; 28(8): 1426–1446
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I'ld to test and validate a management protocol developed by me. These are Prevention of Disability (POD) basic techniques to be applied by nurses in the wound's dressing room...
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Enric's suggestion is the right direction, but much too comprehensive for the development stage. If you are in the beginning stages of testing your protocol, you can start with a small pilot study. This should be randomized, but I don't see why it needs to be clustered. I assume that the nurse follows the protocol and then you measure the outcome on the patient level. It would be sufficient in the pilot to follow a several cases and see if there is a significant effect and if the protocol is OK as is. That should guide you into a more comprehensive study. However, you may find that your protocol needs modification, based on your observation during the pilot. Thus, you can make the changes to the protocol and reassess via another small pilot. Once you feel confident that your protocol is designed appropriately, and that the nurses implementing the protocol are following according to specification, you can formally implement a randomized controlled trial.
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I have been doing a literature review of porphyria. There is a lot of literature that states PBG levels is the indicator for determining that a person is having an acute attack. But this does not seem to be consistent with lived experiences or several case studies and not all types of porphyria have elevated PBG.  
Karen
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I agree with Dr. Brun's response.  It wouldn't be unusual for people to be labelled as having acute porphyria without undergoing the appropriate biochemical testing.  There exists a limitation of certain laboratories in not being able to process the body fluid samples(for PBG, ALA) correctly - possibly from the infrequency of these tests being ordered or errors in sending the sample to the lab.  The sample should also be obtained when the person is having symptoms in order to increase its yield.
Despite decades of porphyria research, a lot remains to be learned about this disorder.  As an example, the American Porphyria Foundation (apf.org) has been working with the NIH and our Porphyrias Consortium in generating studies.
As an aside, there will be an International Congress on Porphyrins and Porphyrias in September 2015 at Dusseldorf.
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Which would be the design most suitable for this research question?
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I think you have to be clearer about what you mean by 'effective' before you decide on your design. 
What do you mean by patient satisfaction?
I would urge you to read a paper by Kinmonth et al Randomised controlled trial of patient centred care of diabetes in general practice: impact on current wellbeing and future disease risk (BMJ. Oct 31, 1998; 317(7167): 1202–1208)
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My team provides disease specialist management of patients living in the community with chronic conditions such as respiratory, cardiovascular and diabetes. In the past we measured disease severity and other biomarkers, but with the move towards self management of chronic disease we want to measure other aspects of health and wellness. Any suggestions? 
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Some of what you want to focus on is biomedical control (BP, A1c, cholesterol)  and what are barriers to medication adherence, obviously, but also look at the behavioral risk factors and what you are doing about them. Is the patient a smoker, and if so what cessation support are you providing? Is the patient physically active? What are you doing for him/her or for his or her community to make them more likely to practice physical activity? What is their sugary drink consumption?   Have you provided nutrition support and counseling or other comity supports?  What is their readiness or motivation to engage in change?  If pre diabetic, have you referred to the diabetes prevention program  and were they able to engage in it? 
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I'm especially interested in your experience with treatment burden scales.
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Your question demands a very detailed answer. There are many scales that look at burden of disease and burden of treatment in chronic conditions. What chronic condition, what target population, what treatment? Person, place and time. Focus on these, and then conduct a search. I am sure you will find many different scales.
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We observed that the prevalence of adaptation to lower limb prostheses was 38%. And patients with a low level of education were the least frequently adapted to the prosthesis.
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I found this article interesting. It was surprising that a delay in fitting led to better results and that marital status had apparently no impact.
Unfortunately there is too often a lack of adequate care on the part of prosthetists for various reasons of training, supervision, job pressures, and unfortunately attitude. Prosthetics is a small, specialized field that has been allowed to deviate from general standards of care that were once considered essential. Often physical therapists are not adequately educated or experienced in amputee care to evaluate the nature of what can be fairly subtle problems. Frequently I have seen otherwise well-educated and well-meaning therapists try to evaluate the correctness of prosthetic limb length with the patient lying down.Likewise few physicians have the background to sort out the details of amputee care and fitting. There is a huge gap that can only be filled by having experienced , dedicated, and knowledgable people from the various disciplines working as a team to insure that critical aspects are covered. The role of the amputee clinic is essential. The majority of amputations are more and more due to systemic illnesses that are expensive to treat but can be ameliorated by the kind of follow-up care such clinics can provide.
Education level generally reflects something about financial resources and the ability to adapt. The poorer a person is or the fewer resources they can muster the less likely they are to have a better outcome. Less education and poverty are always obstacles and lead to accepting outcomes that seem inevitable but can be greatly improved. This happens more easily when a person is not adequately informed ,is handed along without proper oversight, and is not educated enough to know or expect anything different. The complexity of medical care and appointments and medications and funding can easily become an endless litany that is impossible to keep track of and imposes its own burdens and negative outcomes. This kind of poor,fragmented care is the final breaking point in the goal of independence.
Thank you Dr Nunes for a well researched timely article.
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Publications or Experience
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Hello Vahid Zonoobi, there is heaps of research on the Cochrane database and med-line related to diseases such as cardiovascular disease and diabetes. Have you access to the Cochrane library. The world diabetes congress was in Vic last year you can search the website for abstract freely as shareware. Thanks Debbie
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The research I have found is limited. The CDC even seems to be vague. My concern is when patients already have an infection, aren't we reintroducing the infection to the lungs each time we suction? Antibiotics treat the people but not the equipment.
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Shawn,
The most comprehensive information you're likely to find concerning mechanical ventilation equipment and patient infections involve ventilator associated pneumonia (VAP). Trials examining the effects of routine changing of the ventilator circuits and/or in-line suction catheters have shown that changes should only be performed when there is visible soiling present or malfunction. The exposure to potential environmental contaminants during changing of equipment represents a higher risk to the patient. Hopefully, the two links below are helpful for you.
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Can anyone recommend how to improve compliance in chronic diseased patients with inexpensive resources, e.g. low socioeconomic group?
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There are many reasons for non adherence. I would like to focus on the changing relationship between health professionals and patients. Health professionals do not have as much authority as a few decades ago, and they are not seen anymore by their patients as the most credible or only source of medical information. Therefore, to elicit a good reaction we need other ways of treating patients or clients, which we can find in approaches like Motivational Interviewing (MI) or Solution Focused Brief Therapy (SFBT). Both approaches take into account the fact that lots of people don't like being told what to do, even if it is in their best interest. People like even less being judged - health professionals might be more judgemental than they think they are. This sort of behavior by health professionals makes people look for excuses and not open for any other information you might want to give. MI and STSFT make behavioral changes possible, because those approaches have other assumptions about patients, or about the relationship a health professional has with a patient. In MI, an important assumption is "Readiness to change is not a client trait, but a fluctuating product of interpersonal interaction" . In SFBT, the focus is on what a patient is already doing well to achieve his goals and this stimulates a 'can do' attitude with lots of advantages. In MI and in SFBT, the patiënt is not being told what to do, but being helped to make the decision to change and stick to it. She will be more active, taking responsibility and being more committed as well. We all make stories to make sense of the world, and by treating patients differently, you help change their stories of who they are, which we know is very effective (Timothy Wilson, Redirect, 2011). There are no tricks, just changing your behavior might yield good results - and a lot less frustration for the health professional! It is also a very cheap solutiuon which anyone can implement in any medical setting. We like behavioral changes in our patients and clients, but are we willing to change our behavior as well? (You can find lots of information online, I will add just a few links to short documents, the first on MI, the second on SFBT.)