LIST OF TABLES

TABLE TITLE PAGE

NUMBER NUMBER

1. Time flowchart 19

2. Socio-demographic variables of type II 21

diabetes mellitus patients

3. Feedback of self-management activities 22

4. Responses on technologies used in the 26

data capture

5. Responses on personal health 26

information documentation
 LIST OF FIGURES

FIGURE TITLE PAGE

NUMBERS NUMBER

1. Flow diagram of included and excluded 9

studies

2. The average score of self-care 23

activities in management of health
information of diabetes patients

3. Sources used to document self-care 24

activities

4. Challenging categories to document in 25

self-care activities

ABBREVIATIONS
DM - Diabetes Mellitus

IDF - International Diabetes Federation

PHIM – Personal Health Information Management

OPD – Outpatient Department

DSME – Diabetes Self-Management Education

 CHAPTER – 1

INTRODUCTION

1|Page
 INTRODUCTION

Diabetes Mellitus is a long-term or chronic condition that affects people of all ages

directly. The people with diabetes have to follow continuous clinical course in order

to control their high blood sugar levels. For the disease like diabetes, self-care in the

home has equal important as care provided in hospitals or clinics. Because diabetes

cannot be cured completely from the treatment provided in the hospital, diabetes

patients have to include healthy lifestyle and to perform self-care activities like daily

monitoring their blood-glucose levels, following a healthy diet, compliance with

medications like insulin and others.

During self-care activities, many health information or data will be generated.

Personal Health Information is the name given to this information. Own Health

Information Management is the process of patients managing their personal health

information at home.

The goal of the PHIM is to design a better health information strategies and systems

that offer a more support to patients for managing their daily health information

activities. Following self-care management activities and documenting their outputs

or results are extremely important for patients in managing or controlling diabetes.

Because, this health information will help for future self-care planning to patients and

also for the healthcare providers to track their patients’ condition. Maintaining the

previous records orderly can help the physician to take better treatment plans and

healthcare decisions.

Diabetes mellitus (DM) has been on the rise over the past 30 years all across the

world, with a particularly high incidence in the Indian Subcontinent. According to the

International Diabetes Federation (IDF), the global diabetes prevalence in 2021 was

2|Page
10.5 percent, impacting 537 million adults, and this number is expected to rise to 783

million individuals by 2045. Type 2 diabetes affects over 90% of diabetics across the

world. A complex interaction of socioeconomic, demographic, environmental, and

genetic variables is driving the growth in the number of persons with type 2 diabetes.

Urbanization, an ageing population, decreased levels of physical activity, and an

increase in the incidence of overweight and obesity are all major influences.

People with diabetes must develop extra abilities, such as problem-solving, healthy

coping, and risk-reduction behaviours. These skills will help the diabetes patients for

planning their self-care activities and also it provides a positive approach towards

life.

Diabetes patients' lack of knowledge and self-care behaviours are the primary

causes of the disease's development and consequences. This is due to a shortage

of health knowledge among diabetic patients. In countries like India, patients are still

not aware about the personal health information management. Currently, there are

just a few research on diabetic patients' personal health information management.

Hence, this study would be aiming to understand the personal health information

management practices followed by chronic diabetes patients. This study attempts to

develop ways to support PHIM by understanding of patients PHIM activities. The

study also aims at understanding the perception and challenges in data

management among diabetic patient while self-management and in communication

with their physician.

3|Page
1.2 Significance of Study:

This study gives more ideas about the patient perspective of health information

management practices and the challenges they face and the current personal

documentation practices followed by diabetic patients will help in planning and

developing user-friendly tools for safe data documentation.

The research provides a high-level overview of patient-provider communication in

diabetes care. The information will help to develop helpful models for health

information management of chronic diabetes patients.

4|Page
 CHAPTER- 2

AIM AND OBJECTIVE

5|Page
Aim of the study:

The study aims at understanding the perceptions, challenges of self-documentation

practices of health information among type II diabetic mellitus patients.

Objective:

 To assess the perception of type II diabetic mellitus patients about importance

of documenting their health information.

 To identify the challenges in documenting the health-information generated

while self-managing diabetes.

 To learn the details of how individuals capture their health information.

6|Page
 CHAPTER- 3

REVIEW OF LITERATURE

REVIEW OF LITERATURE

7|Page
 Articles Identified (n=87)
Duplicate (n=45)
Studies removed

Potentially relevant article retrieved for

further review (n=42)

Excluded based on titles

Studies (n=10)
removed

Titles considered relevant (n=32)

Studies excluded based on

Studies removed abstract (n=10)

Full-text studies reviewed for

eligibility (n=22)
Studies excluded (n=18)
Studies removed
 Not about the data
Final studies included (n=4) items of personal health
information
 Not about type 2
diabetes mellitus
patients
 Insufficient details
about self-
documentation

Fig 1: Flow diagram of included and excluded studies

As can be seen in fig 1, total 4 studies were included after evaluation. We reviewed

only studies in which all or most subjects had type 2 diabetes mellitus.

8|Page
3.1 Assessment of hypoglycemia in individuals with type 2 diabetes during

clinical encounters in general care and endocrinology offices is documented.

Rene Rodriguez et al. conducted this study with the goal of assessing and evaluating

hypoglycaemia documentation in primary care and endocrinology practises in

connection to diabetic clinical encounters. It is carried out based on the detection of

patient-reported incidents. It was a retrospective cohort research that looked at the

documenting of hypoglycaemia and subsequent care strategies in the electronic

health record for 470 diabetic patients with type 1 or type 2 diabetes mellitus. The

research included 132 hypoglycaemic individuals (46.6 percent). Following

documentation, over 30% of primary care interactions and 46% of endocrine clinic

encounters entailed hypoglycaemia therapy change. Continuous efforts, particularly

in primary care, are required to optimise hypoglycaemia treatment.

3.3 Diabetes patients' strategies for managing personal health information at

home

This research looks at how diabetes patients use information management methods

(i.e., what they do with the data they collect) and how these strategies help them

achieve their health outcomes objectives. This study employed 52 persons with type

1 or type 2 diabetes in the United States and China for semi-structured one-on-one

interviews and visual documentation. Participants used a wide range of information

management strategies, including complex data mining, information visualisation,

space and technology connectivity management, artwork, and other skills and

techniques not well supported by existing tools, services, and social contexts,

according to the study. Finally, the researchers believe that these findings might hint

to major future paths in technology and health care services, as well as their

implementation in other social situations.

9|Page
3.4 A mixed-methods study of type 2 diabetes patients' usage of standalone

personal health records.

The goal of this study is to evaluate the use of a standalone personal health record

(PHR) by patients with type 2 diabetes to standard treatment by assessing self-care

behaviours and the influence on social cognitive outcomes and haemoglobin A1c in

the short term (HbA1c). A mixed-method approach was utilised in a study that

combined a comparative effectiveness pilot with a qualitative interview. A total of 117

people finished the study, according to the results. Low personal health record

adoption and negligible influence on study results were discovered, as well as a lack

of contact and information exchange between patients and physicians.

3.9 Personal Health Information Management in Diabetes

This study aims to learn more about type 1 and type 2 diabetes patients' daily

personal health information management habits, including what drives them to do so,

what activities they engage in, and whether or not it is beneficial. 30 persons with

type 1 or 2 diabetes took part in semi-structured one-on-one interviews and picture

documentation using snowball sampling. The feedback loop connecting motivators,

activities, and emotional processes, as well as other types of information, identifies

39 distinct motivation categories, 22 different activities, and 12 different affective

processes that are interrelated in this study.

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 CHAPTER-4

METHODOLOGY

METHODOLOGY

4.1 STUDY DESIGN:

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To collect data from type II diabetes mellitus patients, a cross-sectional approach

was adopted.

4.2 STUDY SETTING:

Patients visiting the endocrinology out-patient department (OPD) or general

medicine out-patient department (OPD) at Kasturba hospital Manipal, specifically for

diabetes management.

4.3 STUDY POPULATION:

Clients affected with type 2 diabetes mellitus at Kasturba Hospital (KH) Manipal

under endocrinology department or general medicine OPD.

4.4 INCLUSION CRITERIA:

 The patients visiting KH Manipal exclusively for type 2 diabetes mellitus

treatment at endocrinology and general medicine OPD’s.

 The patients within the age group 40-65.

 Diabetic individuals who have been diagnosed and are receiving therapy for

more than a year or two.

4.5 EXCLUSION CRITERIA:

 Diabetic patients who had been to other KH Manipal OPDs.

 Type 1 diabetes or juvenile diabetes and gestational diabetes patients.

4.6 SAMPLING TECHNIQUE:

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Purposive sampling technique will be used to select the type 2 diabetes mellitus

patients visiting general medicine and endocrinology OPD’s in Kasturba Hospital

Manipal.

4.7 SAMPLE SIZE:

A total of 50 people with type 2 diabetes mellitus were chosen from the target

population.

4.8 DATA COLLECTION TOOL:

To get information from the participants, a validated questionnaire containing both

closed and open-ended questions will be utilised.

4.9 METHOD OF DATA COLLECTION:

Patients who meet the inclusion criteria will be chosen from a database of type II

diabetes mellitus patients treated in Kasturba Hospital Manipal's general medicine

and endocrinology OPD's based on the interviewer's judgement. A validated

questionnaire was used to obtain data from 50 participants.

 Firstly, respondents were approached over phone calls in local language and

the confidentiality was maintained.

 During each conversation, we described the goal of our study and obtained

their informed permission.

 Once consent done, they will be interviewed using the validated questionnaire

and their responses will be recorded.

 After collecting the information from the respondents, we analyzed the

knowledge of patients towards personal health information management

(PHIM) and then, we explained in detail to the patients about the importance

13 | P a g e
 of personal health information management especially in diabetes

management and their possible outcomes.

 Finally, the information will be subjected to statistical analysis.

Validated Total 50 patients Explained about the

questionnaire with were chosen and purpose of the study
both close and open- approached them and then informed
ended was prepared over phone calls consent was taken

Explained about the Data entry was done The data will be
importance of PHIM through microsoft subjected to
and the information excel once all the appropriate
has been recorded data was collected statistical analysis

4.10 DATA ENTRY:

This was done using a Microsoft excel includes fields in which the row consists

number of participants, name, age and the prepared questions and rest of the

columns are the collected data.

4.11 ETHICAL CONSIDERATION:

We obtained informed consent and will maintain the respondents' confidentiality and

anonymity. We made certain that patients had agreed to take part in the trial

willingly.

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 4.12 TIME FLOW CHART:

August September October November December

Protocol
preparation and
Submission

Data collection
and data entry

Analysis of data

Literature Review

Preparation of
thesis

Submission of
thesis

15 | P a g e
 CHAPTER 5

RESULT

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 RESULTS

5.1 Socio-demographics variables of participants:

Totally from 50 patients with type II diabetes mellitus of which 29 (58.00%) were men

and 21 (42.00%) were women. Most of them 25 (50.00%) were in the age group of

50 - 59 years and few 11 (22.00%) were in between 60 - 65 years. Out of a total of

50 patients, 20 (40.0%) had less than 5 years duration of chronic diabetes and

majority 24 (48%) of diabetes patients getting health check-up for once in a every

month [Table 1].

Table 1: Socio-demographic variables of patients with type II diabetes mellitus

S. No Demographic Variables Frequency Percentage

a) 40 – 49 years 14 28%
1 Age in years
b) 50 – 59 years 25 50%

c) 60 – 65 years 11 22%

2 Gender a) Male 29 58%

b) Female 21 42%

3 Duration of Less than or equal to 20 40%

diabetes 5 years
(Years) 06 - 15 19 38%

16 - 25 10 20%

26 years and above 1 02%

4 Interval for Once in a every 24 48%

health check- month
up at hospital For every 3 months 16 32%

Twice in a year 3 6%

Once in a year 7 14%

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5.2 Feedback of self-management activities:

[Table 2] shows four questions asked for the diabetes patients about their self-

management plan. As can be seen in [Table 2], 34 (68%) of patients were following

the self-management activities and 16 (32%) of them were not following. Regarding

the documentation of self-management activities, majority 28 (56%) of patients

answered ‘No’ and 22 (44%) of patients answered ‘Yes’. The 36 (72%) of diabetes

patients were finding difficult to track health information for future reference due to

not following self-management plan consistently, on the other side 14 (28%) patients

were not finding any difficulty. Also, the 38 (76%) of patients were faced difficult to

provide adequate information to doctor regarding self-diabetic management whereas

remaining 12 (24%) of patients were did not faced any difficulties.

Table 2: Questions asked for diabetes patients about their self-management

plan

Questions Yes No
1. Following the ‘self-management activities’ to 34 (68%) 16 (32%)
control diabetes

2. Documenting the self-management details for 22 (44%) 28 (56%)

future reference

3. Finding difficult to track health information for 36 (72%) 14 (28%)

future reference due to not following self-
management plan consistently

4. Difficult to provide adequate information to 38 (76%) 12 (24%)

doctor regarding self-diabetic management

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5.3 The average score of self-care activities in management of health

information of diabetes patients:

[Figure 2] summarizes the average score of self-care activities of type II diabetes

mellitus patients related to the management of health information, on the scale of 1-

4. As it can be seen, the diabetes patients who following medications as prescribed

have got a highest score of (3.94), followed by dietary recommendations (3.62) and

regular physical activity (3.28). On the other hand, the diabetes patients who were

documenting or maintaining insulin prescription chart, medication report, diet chart

and physical activities have got a lowest score of (2.34), (2.74) and (2.32)

respectively. The diabetes patients who were regularly checking blood-sugar test

and documenting the values has got an average score of (2.84).

Figure 2: The ave rage s core of s e lf-care acti viti e s in

manage me nt of he alth informati on of diabe te s pa -
ti e nt s

Documenting diet chart and physical activities 2.32

Following dietary recommendations 3.62

Regular physical activity 3.28

Documenting/Maintaining medication report 2.74

Documenting/maintaining insulin prescription chart 2.34

Following diabetes medications as prescribed 3.94

Regular blood-sugar test and documenting 2.84

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5

19 | P a g e
5.4 Sources used to document self-care activities:

[Fig 3] shows the percentage score of sources used by the diabetes patients in order

to document the values of selfcare-activities. As it can be seen, the 21 (41%) of

diabetes patients were using a personal diary to document self-care activities,

whereas only 1 (2%) of patient using a diabetes app and other (Mobile notes)

respectively. On the other side, 28 (55%) of patients were not documenting about

self-care activities.

Fig 3: Th e p er cen t ag e o f so u r ces u sed b y p ati en t s t o

d o cu men t self-car e acti v iti es
Others
2%

Personal diary

Don’t document 41%

55%

Diabetic app
2%

Personal diary Diabetic app

Don’t document Others

5.5 The challenging category of diabetes self-management to document:

[Fig 4] summarizes the score of challenging categories to document in diabetes self-

management among patients. Each diabetes patients selected two categories in

self-management which challenges them to document. Among them blood-glucose

monitoring chart got a highest score of (12), followed by insulin and medication chart

20 | P a g e
(10), physical activity chart (8) and diet chart (4). Whereas remaining 28 patients

were not documenting any self-management activities.

Fig 4: Th e c h allen g in g cat eg o r y o f d iab et es self-man -

ag emen t t o d o c u men t
30

25

20

15

10

5.6 Responses on technologies used in the data capture:

[Table 3] shows the number of diabetes patients who used the technologies like

mobile or other similar devices in the data capture for the diabetes management. As

it can be seen in [table 3], only (2) patients were using a mobile or other similar

devices for capturing data and it helped them in managing diabetes as well as in

improving communication with the doctor and hospital. On the other hand, (48)

patients were not used any technologies like mobile or other similar devices.

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 Table 3: The response of type II diabetes mellitus participants on the usage
of technologies in data capture
Yes % No %
The data captured related to the 2 4 48 96
diabetes management using
technologies like mobile or other similar
devices
The technology and tools used helped in 2 4 48 96
managing the diabetes.

The technology and tools used helped in 2 4 48 96

improving communication with the
doctor and the hospital

5.7 Responses on personal health information documentation:

[Table 4] demonstrates diabetes patients' answer to the question of whether

personal health information is necessary in diabetes care. As it can be seen in

[Table 4], The 31 patients were answered ‘Don’t Know’, whereas 13 patients

answered ‘Yes’ and 6 patients answered ‘No’ for the necessity of personal

documentation in diabetes management.

Table 4: Responses of diabetes patients regarding the necessity of personal

health information in the diabetes management
Yes % No % Don’t Know
Personal documentation of 13 26 6 12 31
health information is
necessary in diabetes
management

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5.8 Challenges for diabetes patients to manage personal health information

documentation:

A total of 4 main challenges were recorded among the participants within the study

period, of which 24(48%) were due to lack of knowledge on personal health

information documentation, 13(26%) were due to lack of time management, 10(20%)

were due to work pressure and 3(6%) were due to lack of support from others.

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 CHAPTER-6

DISCUSSION

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 DISCUSSION

The present study was conducted with the aim of understanding the perceptions,

challenges of self-documentation practices of health information among type II

diabetic mellitus patients visiting the endocrinology OPD or general medicine OPD at

Kasturba Hospital Manipal. The study analyzed a view of patients related to

documentation of self-care activities and also, identified some challenges involved

during management of personal health information in diabetes management.

Problem-solving, decision-making, and planning are three self-management tasks

that rely heavily on the cognitive processing of information by patients. These

activities usually require patients to be knowledgeable about the diseases they are

living with and their own data on past illness episodes. 28 Also, patients would need to

evaluate the information at hand- judge its usefulness, relevance, quality, and

applicability. Further, patients would need to be capable of connecting information

about the disease and themselves in order to make meaningful inferences about the

development of their conditions, and decide what to do next and how to carry out the

treatment and regimen plans.29

6.1 Documentation of self-management activities

In the present study, when looking at the data on patients who were following self-

management activities, majority of the diabetes patients were following the self-

management activities as instructed by their physicians or healthcare providers. On

the other hand, patients who were documenting or managing the records of self-care

activities is quite low. This suggests that, there is a need to create awareness among

diabetes patients about the concept of personal health information documentation. A

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health information plays an essential role in the process of self-diabetes

management, so it’s very important for the patients to manage the personal health

information or else they will find difficult to track their health information for future

references. Also, it will increase the difficulties in communication between provider-

patient for future treatment plans. The present study also shows that most of the

patients were finding difficulty to track their health information for future references

and in providing adequate information to their physician related to their diabetes

management. This indicates that there is a need to educate people on importance of

personal health information documentation especially in diabetes management.

Previous research has shown that effective diabetic self-care techniques can

dramatically lower the risk of long-term consequences such as nephropathy,

neuropathy, and retinopathy, as well as cardiovascular and cerebrovascular issues. 30

As a result, individuals with diabetes must practise devoted self-care behaviours in a

variety of areas, including diet selection, physical activity, regular medication

administration, and blood glucose monitoring, among others. The current study

presents data from type 2 diabetes mellitus patients in a variety of self-care

categories. Although, many of the patients adhere to self-care activities in the

majority of the domains, they were not documenting it consistently. In diabetes

management, following self-care activities and managing personal health information

has equal important, since health information gives the clarity of treatment patterns

followed by diabetes patients in their daily life. This shows that greater effort should

be made to educate diabetic patients.

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6.2 Usage of sources (including technologies and tools) to document self-care

activities

Patients have access to a variety of resources for health information on their illness

management. These resources will aid patients in their self-care tasks by assisting

them with problem-solving, decision-making, and planning. It also plays a crucial role

in the administration of personal health information. Digital health technology,

particularly digital health applications, has advanced rapidly in recent years for

persons with or at risk of diabetes, and has become an increasingly prevalent feature

of diabetes treatment and self-management in some groups. To help persons with

diabetes, there are a variety of health-related applications available for smartphones

and other wireless devices.31

Even though many digital tools were identified, many adults with diabetes have not

been aware with the necessary tools or technologies for self-care. The present study

also shows that only two patients were using mobile apps and rest of them are still

following a traditional method like recording in a personal diary. This is because of

potential barriers involved in the usage of digital tools. Most of the patients with type

2 diabetes are elderly people, and as such, they are expected to have less

experience with computers and the use of mobile solutions. Another issue is lack of

basic health literacy, basic health literacy is important for the patient to understand

their disease and its treatment. When a patient does not grasp the basics of

diabetes, they are more likely to reject digital solutions because they do not see the

benefits.32 So it’s very important to undertake an awareness program about Diabetes

Self-Management Education (DSME) and to assist them for effective use of various

technologies involved in diabetes management.

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6.3 Challenges in Personal Health Information Management (PHIM)

Non-adherence or inconsistency to recommended diabetes self-management

regimen by patients leads to poor management of health information, which affects

the diabetes control. This will lead to further complications. Diabetes-related

discomfort is a key determinant in patients' poor adherence to self-management,

according to a research by Peyrot M et al. 33 Also, many patients will get confuse or

forgot to follow their self-care activities like checking blood-sugar levels or to take

their medications. This makes difficult to record accurate values. The present study

shows that, many of the patients faced complications to record the values of blood-

sugar levels, because of the fact that it varies on a daily basis and it need to be

monitored constantly. In addition, lack of support from family and friends, financial

constraints, work and environment related factors, dynamic and chronic nature of

diabetes and unrealistic expectations are some factors, that will challenge for

patients while managing self-care activities.34

The present study received some factors by patients, which makes a barrier to them

to carry out self-care activities and to record their health information. In that, majority

of the patients were faced problems due to lack of knowledge on PHIM, lack of time

management, busy working environments and few of patients faced problem due to

lack of support from family and friends to manage their self-care activities. It is very

important to cope these factors and to create strategies to identify and manage the

impact of stress on diabetes management. This might include frequent learning

programs about the effects of stress on diabetes patients' health and strategies for

reducing it. 35

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6.4 View of Type 2 Diabetes Mellitus on PHIM

As mentioned in the introduction, information management is an important activity

that is present in many processes of self-management for chronic conditions.

Research suggests that staying informed and effectively using health information to

communicate with patients’ health care team is a key to better long-term health
36
outcomes. However, it also holds many challenges originating from the complexity

of the illnesses, characteristics of chronic health information, and patients’ capacity

in managing and processing information. These obstacles prevent diabetes patients

from engaging in self-care activities.

The present study assessed a perception of patients on PHIM, which says that still

most of the patients are not aware about the concept of PHIM and they are just

following the instructions of physician without much planning from themselves for

managing self-care activities. Therefore, in order to facilitate patients’ self-

management, it is important to understand why patients use or not use some

information management tactics, how patients experience on-uses with various

aspects of information management, and how these experiences can be enhanced

or diminished and made more effective for facilitating self-management.

Finally, comprehensive diabetic self-management education programs at the primary

care level are critical, with an emphasis on inspiring appropriate self-care behaviors,

particularly lifestyle adjustment. Furthermore, these programs should not be used

only once, but rather on a regular basis in order to accomplish long-term behavior

modification.

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 CHAPTER-7

CONCLUSION

30 | P a g e
 CONCLUSION

Diabetes is a complicated and difficult condition that necessitates a person's daily

decisions about diet, physical exercise, medicines, and other self-care duties. This

study reflects a perception of type 2 diabetes mellitus patients about their personal

health information documentation. Also, the study gives a brief outlook about the

challenges and barriers that patients face during self-management activities.

Overall, this study reflects that there is a need to improve self-management

knowledge in managing personal health information among the patients which can

be motivated through community health nurses or well-known educators and

achieved through community health centers. It emphasizes to bring the awareness

among the people in a right path and extend the programs about managing personal

health information in mass campaigns thoroughly. Also, it’s very important to create

awareness among diabetes patients to inbuilt a knowledge about the various

technologies and tools for documenting self-management activities. Finally, it’s very

important for doctors, nurses, dietitians and other health team members to join

hands with these diabetic patients to help them live healthy by providing them with

the right information at every available opportunity.

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 CHAPTER-8

LIMITATIONS AND RECOMMENDATIONS

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8.1 Limitations

This study has two major limitations related to sample size and method of data

collection including (a) small sample size: the samples used within the articles need

to include more diverse patient groups with larger sample sizes for generalization of

the results. and (b) The second one is the feedback collected by patient over the

phone, which limits the collection of accurate data.

8.2 Recommendations

Extensive research is desperately needed to develop useful models for managing

personal health information. Simultaneously, field studies should be encouraged in

order to examine patient opinions of the usefulness of their documentation in self-

care management so that diabetes mellitus resources may be used effectively.

Lastly, further studies are needed to confirm suitability of the current program among

larger sample of type 2 diabetes mellitus patients.

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34 | P a g e