Table 1 Overview – included studies

 Lamberts et al. 2010 [15]*

Focus group

n = 42

Type 2 DM (T2DM)

f (n = 13), m (n = 19)

18–80

Information needed and provided according to patients starting oral T2DM medication

The study explored the information needs of patients who have recently started treatment with oral antidiabetics and analysed the provision of information. The study showed that patients are in need of diabetes-medication information such as drug-related issues.

x

+

11/12

 Lee et al. 2007 [16]*

Interview

n = 24

T2DM

f (n = 6), m (n = 18)

44–79

Knowledge of diabetes and prescribed medicines; experiences with medicines information; consumer-specific written medicines information needs; written leaflets on medicine information needs

A ‘Consumer Involvement Cycle’ is developed to assist researchers, and to analyse perspectives and needs on medicines information to develop written medicines information. The study identified a lack of written medicine information for people with diabetes, who wish for specific information about their medicine (mechanisms of action, administering instructions, drug-related issues)

+

11/12

 Olsen Roper et al. 2009 [18]

Interview

n = 58

Type 1 DM (T1DM)

f (n = 37), m (n = 21)

8–18

Existing knowledge about diabetes and information needs about diabetes

This study explored information needs of children with DMT1 among other things concerning diabetes care, its pathophysiology, consequences, treatment and possible cure.

x

+

11/12

 Ravert et al. 2004 [17]

Website evaluation

n = NR

(n = 340 Messages)

T1DM

f (79%), m (21%) (sex was identified in 48,5% of all messages)

11–19

Reasons for posts; topics of requests; reliability and coding issues; forum differences; gender differences; age and duration of illness

This study explored messages posted on public web-based forums. The people with diabetes expressed information needs regarding the consequences of the disease, social support and life tasks.

x

+

10/12

 Savage et al. 2009 [19]

Focus group

n = 13

T2DM

f (n = 9), m (n = 4)

26–44

Preferred content and delivery mode of education and information

This study showed that the main information need of people with DMT2 between the ages of 25 to 45 was related to adequate information on managing diabetes themselves, e.g., medication, preventing diabetes, pregnancy and emergency management not sufficiently covered at present.

x

+

11/12

 Van Esch et al. 2010 [21]

Website evaluation

n = 77

(n = 158Messages)

T1DM, T2DM, Gestational DM (GDM), Maturity onset diabetes of the young (MODY)/Not defined

f, m (no number available for people with DM)

< 20–> 41

Information needs of online consumers (genetics and diabetes)

This study identified information needs about the role of inheritance in diabetes.

x

_

7/12

 Wilson 2013 [24]

Questionnaire

n = 30

T1DM, T2DM

f (n = 16), m (n = 14)

22–64

Access; information type;

The study explored the method preferred by people with diabetes to access information about their condition, and what type of information they require.

x

_

1/12

 Duggan et al. 2008 [4]*

Interview

n = 117

not defined (and other diseases)

f, m (no number available for peole with DM)

55.5–60.3

Relationships between information needs, diagnosis and disease

The study showed that different diagnoses and diseases are associated with different medicine information needs.

+

2PP, 4P, 4 M, 0NR, 9NA

 Whitford et al. 2013 [23]

Focus groups and semistructured interviews (within a randomised controlled trial)

n = 29 (support groups)

T2DM

NR

NR

Information needs of participants with T2DM

This explored the use of a system of patient-generated “frequently asked questions” in order to gain insight into the information needs of participants.

_

1PP, 3P, 4 M, 1NR, 10NA

 Whetstone 2014 [22]

Interview

n = 21

T2DM

f (n = 15), m (n = 6)

38–79

Kept health information and information needs

This study explored information behaviour and information needs.

x

+

3PP, 3P, 4 M, 1NR, 8NA

 Beeney et al. 1996 [3]

Interview + questionnaire

n = 1145

T1DM, T2DM

f (n = 573), m (n = 572)

39.9 ± 19;64.2 ± 12

Information needs and emotional support

They study explored patient information needs for emotional support and information preferences.

x

_

5/21 (11 NA)

 Sparud-Lundin et al. 2011 [20]*

Questionnaire

n = 105

T1DM

f (n = 105)

≤30–36≥

Socio demographic factors; use of the internet (information seeking and communication); diabetes-related issues and specific questions on needs in relation to childbearing; Expectations of web-based support

This study explored the internet use, the needs and expectations of web-based information and communication. Information needs were expressed regarding diabetes-related aspects, regarding e.g., pregnancy, childbirth, and parenthood.

x

_

5/21 (9 NA)

 St. Jean 2012 [8], 2014 [9]

Interview, questionnaire, card sorting, timeline

n = 34

T2DM

f (n = 20), m (n = 14)

30-89

Changes across the time: information seeking and use; awareness and capability of articulating information needs; usefulness of sources and types of diabetes-related information

This study explored information behaviour and its changes across time, and identified different content types of diabetes-related information needs, e.g., risk factors, medication, exercise.

x

+

7 of 21 (13 NA)

 Goldman et al. 2008 [25]*

Interview

n = 36

not defined

f (n = 22), m (n = 14)

20–61+

Patients’ opinions about automated speech-recognition telephone technology

While developing an automated telephone outreach intervention for people with diabetes, the study obtained IN of patients on nutrition and dietary advice, consequences and blood glucose control.

+

10/12

 Hjelm et al. 2008 [26]*

Interview

n = 23

GDM

f (n = 23)

23–41

Beliefs about health and health care

While exploring beliefs about health, illness and healthcare in women with Gestational Diabetes Mellitus (GDM), further study results identified IN about GDM and its treatment.

++

12/12

 Lindenmeyer et al. 2013 [27]*

Interview

n = 20

T2DM

f (n = 8), m (n = 12)

40–82

[27] awareness; interaction with dental health professionals and information exchange; information preferences

The study explored the awareness of people with type 2 diabetes, how they communicate with dentists and professionals (primary care), and preferences of how to receive care and information related to oral health.

+

11/12

 McCorry et al. 2012 [28]*

Interview

n = 14

T1DM

f (n = 14)

21–38

Attitude toward pregnancy planning and pre-conception

The study explored attitudes toward pregnancy planning and antenatal care. IN of women with T1DM concerning antenatal care, pregnancy and diabetes management in this time.

++

12/12

 Meyfroidt et al. 2013 [29]*

Focus group

n = 21

T2DM

f (n = 7), m (n = 14)

41–85

Use of information sources; information seeking; problems encountered by the patients

While obtaining data to determine how people with diabetes seek and use information sources for their diet, further results identified IN concerning food characteristics.

x

++

12/12

 Peel et al. 2004 [30]

Interview

n = 40

T2DM

f (n = 19), m (n = 21)

21–77

‘Suspected diabetes’ route to diagnosis; ‘illness’ route to diagnosis; ‘routine’ route to diagnosis; information provision at diagnosis; overall emotional reactions to diagnosis

During research on patients’ views on information provision at the time of diagnosis, the study identified the need for information on course of disease and its consequences, diabetes management and advice on nutrition.

+

9/12

 Wilkinson et al. 2014 [35] *

Interview

n = 47

T2DM

f (n = 22), m (n = 25)

34–85

Diagnosis of diabetes; symptoms; access; experience of diabetes services; current health; self-management/support

The study explored the quality of diabetes care and identified IN on, for example, diet, risk and complications explained.

_

6/12

 Chen et al. 2012 [31]

Web based blog analysis

n = 516

(n = 2806 Messages)

T1DM

NR

NR

Patient experience (emotional, temporal)

The study explored online discussion forums for three conditions: breast cancer, T1DM and fibromyalgia. It showed that many people with T1DM addressed topics of diabetes management. However, they were also interested in website references, sharing experiences and support.

_

0PP, 1P, 8 M, 0NR, 10NA

 Hajos et al. 2011 [33]

Questionnaire

n = 1609

T2DM

f (n = 660), m (n = 949)

51.4 ± 12.5

Seriousness of their diabetes, diabetes-related distress, worries about complications, need for care improvement

The study explored the extent to which physicians understand T2DM; e.g. patients’ perceptions of seriousness and emotional distress, and needs for care improvement. The study showed that people need more information about treatment options, where to get support and the newest information.

+

1PP, 7P, 1 M, 0NR, 9NA

 Robertson et al. 2005 [34]

Questionnaire

n = 70

T1DM, T2DM

f (n = 27), m (n = 43)

16–79

Sources and adequacy of information

This study explored the sources of information and their adequacy for supplying diabetes information. The people with diabetes expressed a lack of information about their condition.

x

+

1PP, 5P. 3 M, 1NR, 9NA

 Frandsen et al. 2002 [32]

Interview + questionnaire

n = 123

T2DM

f (n = 59), m (n = 64)

45–60

Issues and barriers relating to patient compliance

The study explored issues and barriers relating to patient compliance and showed that the people with T2DM want more information about their condition.

_

0/21 (19 NA)

 Mühlhauser et al. 1988 [6]*

Interview + questionnaire

n = 37

T1DM

f (n = 13), m (n = 24)

38 ± 9

Blood pressure control (compliance)

The study explored the degree of blood pressure control and identified the need for more information about high blood pressure.

+

4/21 (9 NA)