Literature review – Understanding the patient’s perception about chronic diseases and conditions, Barrier for non-adherence and poor follow-up.

By Akash Prabhune, Research Associate – ICTPH

Background

Chronic diseases and conditions are the group of diseases which include cardiovascular diseases, metabolic disorders, and cognitive disorders. The Chronic diseases are on rise globally since last decade(1). Of the broad classified Chronic diseases cardiovascular diseases (CVD), diabetes, and cancer have been showing exponential rises globally(1,2). Multiple treatment modalities, drug regimes, prevention programs, policy level provisions have been done in recent period to combat with over increasing burden of CVD and diabetes(3). While the burden of CVD and diabetes is increasing and health systems are struggling to meet the health care requirements, efforts are being made to understand the patient, health care provider, and community role in effectively controlling the conditions(2). Literature has documented that conditions like CVD and diabetes can be prevented and effectively controlled with proper medication, lifestyle modification and adequate physical activity(1). India has witnessed exponential rise in CVD and diabetes cases since last decade and moreover Indian population has been identified as more susceptible to CVD and diabetes(4). The Indian health care system is currently facing double burden of diseases with substantial amount of infectious diseases still prevalent in country and rise in lifestyle diseases(5). For effective management of CVD and diabetes it is integral to understand patients perception about the disease, attitude, knowledge and awareness about his condition.(6) Also there is a need to understand the complex relationship between the first detection of condition till the effective and long-term follow-up to prevent the loss to follow-up and poor adherence to treatment regime.(7) The complications arising from non-adherence and loss to follow up are on rise globally and same is the case with India. Interestingly in Indian scenario the problem is much more deep rooted than what appears on global scale, as in Indian population the cases are CVD and diabetes are under documented and those who are confirmed cases of CVD or diabetes or both are reluctant to follow-up on regular basis and are more inclined to neglect their health needs until and unless they face serious complications related with the condition(8).

We herein reviewed the literature which has documents the perception of patients, health care providers, policy makers regarding their knowledge, attitude towards the CVD and diabetes and what are the reasons for non-adherence and barriers for effective follow up. We have emphasized on qualitative research including focused group discussions (FGD’s), In-depth interviews, and semi structured or structured interviews for various stakeholders of Health system to understand the amount of published literature globally and in India. We believe that this review will help us to gain the insight of amount of work done and lacunae in literature which requires special attention to fill the knowledge gap.

Objectives

To understand the perceptive of various stakeholders on knowledge, attitude and reasons for non-adherence and poor follow-up of patients suffering from CVD and diabetes.

To review the India specific studies pertaining to above mentioned topic and asses the need for conducing more studies in urban and rural Indian population to better understand the needs of patients to effectively combat CVD and diabetes

Methods

For our review we concentrated on published qualitative studies related to understanding perception of various stakeholders for chronic Health diseases

We searched online databases including Medline, Cochrane library. We used MeSH terms “Qualitative”, “Chronic Health Diseases”, “Perception” and incorporated terms like patients, participants, subjects, individual, perception, knowledge, understanding, views, CHD, Chronic health diseases, lifestyle diseases, non-communicable diseases, qualitative study, focused group discussion, in-depth interviews, semi structured interviews, structured interviews to build our search strategy. We also added filters of Studies from last ten years only as the data from earlier studies was anticipated different from the current studies. With this search strategy we encountered 1197 articles in PubMed database. To reduce the search results we added terms “Cardiovascular diseases, CVD, Diabetes, DM, Diabetes mellitus” as our objective was to look mainly on these two diseases. After adding our additional terms our search results came down to 911. From the 911 studies we selected 28 studies which were most relevant to area of interest.

Discussion

Of all the 28 studies we reviewed we classified the findings of the studies based on the objectives of the study. We broadly classified as

  • Patients perception about the CVD and Diabetes
  • Patients, health care provides perception for non-adherence to treatment regime
  • Patients perception for poor follow-up

We also classified studies into

  • Perception of residents of developed countries
  • Perception of residents of developing countries

 

Patients perception about the CVD and Diabetes

Today we are ushering into era of patient centric medicine or personalized medicine and while stepping into new possibilities we want the patient to be the center of all the health care system. In all the studies we reviewed, in either way they are all concerned with the perception of patient regarding CVD or diabetes or both. The researcher have tried to look at the knowledge of the patients regarding the condition, their attitude towards the diseases and willingness to accept the disease and modify his/her lifestyle to lead a healthy life style. Table 1 provides a summary of all the studies we reviewed for patient’s perception.

Table 1. Summary of Patient’s perception
Knowledge

Healthy Individuals

 

 

 

 

  

 

Patients Suffering from CVD or Diabetes

 

  • CVD and Diabetes are diseases of old people.(9,10)
  • The poor lifestyle and dietary habits are the factors that can lead to onset of CVD and Diabetes.(10,11)
  • They will visit health care practitioner only if they feel uncomfortable.(11)
  • There is no need for regular screening as they are free from any symptoms.(11)

 

  • We need to change our lifestyle and dietary habits to manage the condition.(11–13)
  • Physical activity like walking for 20 mins 3 times a week can significantly reduce the complications and effectively manage the conditions.(14–16)
  • Our parents had diabetes and has suffered a lot due to disease and we are now the next to suffer.(17)
  •  It is difficult to manage the life because of disease and social stigma associated with the condition.(17)

 

Practices

Healthy Individuals

 

 

Patients Suffering from CVD or Diabetes

 

  • Shifting from unhealthy dietary habits to health habits like fresh fruits.(17)
  • Increasing or starting any physical activity to prevent the onset of disease.(10)

 

  • Initially patients are in denial state when the disease is diagnosed but later patient realizes the gravity of the situation and tries to adopt to the situation.(6)
  • During the later stages patient tries alternative therapies to overcome the symptoms associated.(17)
  • Patients develop distrust and dislike for concurrent medicine and explores different modalities like alternative medicine.(7)

While it seems that the healthy individuals are aware about the risk of CVD and diabetes due to their lifestyle and dietary habits. There is a long road ahead from plan to action for these patients. On the other side for patients who have been diagnosed with CVD or diabetes, they find it difficult to cope with their increasing health demands and to effectively balance their lifestyle to adapt for newly advised modifications.

 

Patients, health care provides perception for non-adherence to treatment regime

The detection and diagnosis is the first step for management of CVD, diabetes and other chronic conditions, and the adherence to the prescribed treatment regime with regular follow-up is second and most important step in management of the disease. Various studies and systematic reviews have been conducted to explore and confirm the common reasons for non-adherence to treatment regime. Table 2 gives the list of most common reasons for non-adherence to treatment from patient’s perspective and medical practitioner’s perspective.

Table 2. Patients, health care provides perception for non-adherence to treatment regime
Patients reasons for non-adherence
  • Forgetting to take the medicine.(7,15,17,18)
  •  Medicine has shown some unintended side effects.(19)
  • Lack of motivation from parents/spouse/peers for effective adherence.(17–19)
  • Expensive medicines leading to financial burden of families.(13,17)
  • Comorbid conditions (20)
Medical practitioners reasons for non-adherence by patient
  • Lack of knowledge about the importance of adherence to treatment regime(6,7,17,18)
  • Rapport between the physician and the patient(6,11,18)
  • Patients trust on the physician(11)
  • Patient’s attitude towards his wellbeing(11,19)
  • Lack of availability of medicines (17)

 

Patients perception for poor follow-up

With non-adherence, loss to follow-up remains the next most common problem for management of chronic diseases and conditions like CVD and diabetes. In Table 3 we have listed the literature documented most common reasons for loss to follow-up form patient’s perspective

Table 3. Patients reasons for loss to follow-up
  • No clinical signs or symptoms of the disease (7,18)
  •  Long waiting time at clinics(13,19)
  • Busy or Travelling(20,21)
  • Medical services not available in close proximity(19,22,23)
  • Expensive health care(7)

 

From the literature we also explored the difference between the perceptions of residents of developed countries and developing countries. What was interesting was that patients globally feel that the health care cost is burden on their families and it is ever increasing. While lack of proper health care services and infrastructure was the main concern of residents of developing countries the issues faced by the residents of developed countries were lack of support from families/peers/friends. In all the literature we came across for constructing this review there were few studies reporting the perceptions of Indian population about diabetes and CVD including both rural and urban settings.

Conclusion

We can infer from the data that, globally the perception of patients about the knowledge and understanding about the CVD and diabetes is similar and the importance given by them differs with their cultural practices and traditional beliefs. It was universally seen that the patients were willing to change their lifestyle to cope with the disease but were short on motivation. While the amount of knowledge varies from countries, regions, ethnicity there was basic awareness and understanding about the problems faced due to CVD and/or diabetes remains the similar. The reasons for non-adherence and follow-up were influenced by the availability and cost of the medicines and the availability of the health care services. Most of the research done was in developed countries including UK, Ireland, Canada, USA, and Spain while there are studies from developing countries like Ghana, Nepal, Cameron, Malaysia and Bangladesh. The findings from the studies conducted in South Asian population can be attributed to Indian population to certain extent, whiles its generalizability remains questionable. We believe that there is a need to conduct qualitative studies in urban and rural settings of different regions of the country to understand the knowledge, awareness regarding CVD and diabetes which will help to gain the insight of India specific aspect of the diseases perception and would also help us to understand the gravity of the situation to effectively combat the growing burden of CVD and diabetes.

References

  1. World Health Organization, Public Health Agency of Canada, editors. Preventing chronic diseases: a vital investment. Geneva : [Ottawa]: World Health Organization ; Public Health Agency of Canada; 2005. 182 p.
  2. Centers for Disease Control and Prevention. Diabetes Report Card 2014. Atlanta, GA: Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2015.
  3. WHO | World Health Organization [Internet]. WHO. [cited 2016 Mar 8]. Available from: http://www.who.int/chp/chronic_diseases_report/en
  4. Bachani D, Srivastava R. Burden of NCDs, Policies and Programme for Prevention and Control of NCDs in India. Indian J Community Med. 2011;36(5):7.
  5. Sinha K. 8-CHRONIC DISEASES TO BLEED INDIA.
  6. Tambo-Lizalde E, Carrasco-Gimeno JM, Mayoral-Blasco S, Rabanaque-Hernandez MJ, Abad-Diez JM. [Patient and health professional perceptions on the quality of care provided to diabetic patients]. Rev Calid Asist Organo Soc Espanola Calid Asist. 2013 Apr;28(2):124–31.
  7. Al Hamid A, Ghaleb M, Aljadhey H, Aslanpour Z. A systematic review of qualitative research on the contributory factors leading to medicine-related problems from the perspectives of adult patients with cardiovascular diseases and diabetes mellitus. BMJ Open. 2014;4(9):e005992.
  8. Srinath Reddy SM. CHRONIC DISEASES IN INDIA: BURDEN AND IMPLICATIONS [Internet]. 2014. Available from: http://cgd.swissre.com/risk_dialogue_magazine/Cardiovascular_risks_in_HGM/Chronic_Diseases_in_India_Burden_and_Implications.html
  9. Doherty ML, Owusu-Dabo E, Kantanka OS, Brawer RO, Plumb JD. Type 2 diabetes in a rapidly urbanizing region of Ghana, West Africa: a qualitative study of dietary preferences, knowledge and practices. BMC Public Health. 2014;14:1069.
  10. Cooper M, Harding S, Mullen K, O’Donnell C. “A chronic disease is a disease which keeps coming back…it is like the flu”: chronic disease risk perception and explanatory models among French- and Swahili-speaking African migrants. Ethn Health. 2012;17(6):597–613.
  11. Smith LR, Fisher JD, Cunningham CO, Amico KR. Understanding the behavioral determinants of retention in HIV care: a qualitative evaluation of a situated information, motivation, behavioral skills model of care initiation and maintenance. AIDS Patient Care STDs. 2012 Jun;26(6):344–55.
  12. Carvalho MS, Coeli CM, Chor D, Pinheiro RS, Fonseca M de JM da, Sa Carvalho LC de. The Challenge of Cardiovascular Diseases and Diabetes to Public Health: A Study Based on Qualitative Systemic Approach. PloS One. 2015;10(7):e0132216.
  13. Shakya-Vaidya S, Povlsen L, Shrestha B, Grjibovski AM, Krettek A. Understanding and living with glaucoma and non-communicable diseases like hypertension and diabetes in the Jhaukhel-Duwakot Health Demographic Surveillance Site: a qualitative study from Nepal. Glob Health Action. 2014;7:25358.
  14. Murray J, Fenton G, Honey S, Bara AC, Hill KM, House A. A qualitative synthesis of factors influencing maintenance of lifestyle behaviour change in individuals with high cardiovascular risk. BMC Cardiovasc Disord. 2013;13:48.
  15. Murray J, Craigs CL, Hill KM, Honey S, House A. A systematic review of patient reported factors associated with uptake and completion of cardiovascular lifestyle behaviour change. BMC Cardiovasc Disord. 2012;12:120.
  16. Jones EJ, Appel SJ, Eaves YD, Moneyham L, Oster RA, Ovalle F. Cardiometabolic risk, knowledge, risk perception, and self-efficacy among American Indian women with previous gestational diabetes. J Obstet Gynecol Neonatal Nurs JOGNN NAACOG. 2012 Mar;41(2):246–57.
  17. Puspitasari HP, Aslani P, Krass I. Challenges in the care of clients with established cardiovascular disease: lessons learned from Australian community pharmacists. PloS One. 2014;9(11):e113337.
  18. Hultgren F, Jonasson G, Billhult A. From resistance to rescue–patients’ shifting attitudes to antihypertensives: a qualitative study. Scand J Prim Health Care. 2014 Dec;32(4):163–9.
  19. Oli N, Vaidya A, Subedi M, Krettek A. Experiences and perceptions about cause and prevention of cardiovascular disease among people with cardiometabolic conditions: findings of in-depth interviews from a peri-urban Nepalese community. Glob Health Action. 2014;7:24023.
  20. Tang Y, Zhao M, Wang Y, Gong Y, Yin X, Zhao A, et al. Non-adherence to anti-tuberculosis treatment among internal migrants with pulmonary tuberculosis in Shenzhen, China: a cross-sectional study. BMC Public Health. 2015;15:474.
  21. Bayliss EA, Bonds DE, Boyd CM, Davis MM, Finke B, Fox MH, et al. Understanding the context of health for persons with multiple chronic conditions: moving from what is the matter to what matters. Ann Fam Med. 2014 Jun;12(3):260–9.
  22. Atobrah D. When darkness falls at mid-day: young patients’ perceptions and meanings of chronic illness and their implications for medical care. Ghana Med J. 2012 Jun;46(2 Suppl):46–53.
  23. Brundisini F, Giacomini M, DeJean D, Vanstone M, Winsor S, Smith A. Chronic disease patients’ experiences with accessing health care in rural and remote areas: a systematic review and qualitative meta-synthesis. Ont Health Technol Assess Ser. 2013;13(15):1–33.

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