Table 2 Overview of extracted studies

Berth et al. (2007) [10]

To validate the German version of the Amsterdam Preoperative Anxiety and Information Scale (APAIS).

Cross-sectional design;

68 patients questioned before surgery on the lower extremities in the orthopedic department of a University Hospital.

Questionnaire for self-assessment of preoperative anxiety and the need-for information (APAIS).

Association between IN and:

Treatment

A higher level of need-for-information is accompanied by a higher level of anxiety (Spearman coefficient r = 0.59, ρ < 0.01). One exception is the very small group of male patients in which the anxiety level does not significantly differ between the three groups of need-for-information.

Validation study.

30.9 % male;

Likert scales.

• anxiety

Mean age (range) was 55.6 (18–85) years.

Conrad et al. (2012) [11]

To identify topics of IN for patients with Crohn’s disease or ulcerative colitis.

Cross-sectional design;

612 patients with Crohn’s disease and 444 patients with ulcerative colitis.

Postal survey with 19 predefined categories of IN;

Topics of interest.

Aetiology

Most frequently expressed IN (≥70 %):

Quantitative analysis of predefined topics.

34.8 % male;

Dichotomous question for each category:

Association between IN and:

CAM

• Treatment options (82.7 %)

Mean age (SD) was 42.4 (12.8) years;

“Yes, I want more information about the topic…”

• age

Financial/legal

• Cause of disease (79.5 %)

Duration of illness ≥ 10 years was 54.8 %.

• anxiety

Medical system

• What can I do myself (79.2 %)

• depression

Nutrition

• CAM (76.7 %)

• disease activity

Prevention/ health promotion

Gender differences were rare;

• duration of illness

Prognosis

IN were significantly higher with decreasing age, increasing education, shorter duration of illness, higher illness activity and higher depression and anxiety scores.

• education

Rehabilitation

• gender

Social life

Treatment

Eustachi et al. (2009) [12]

To assess the use of, knowledge about and demand for complementary and alternative medicine (CAM) in cancer patients

Cross-sectional design

156 outpatient cancer patients at the tumor treatment centre of a university hospital.

Questionnaire including a 5 point Likert scale for “degree of being informed” and “subjective importance” of CAM treatment.

Extent of IN: demand for consultation about CAM.

CAM

48 % definitely demanded CAM consultation irrespective of whether they already used CAM or not.

Quantitative analysis of predefined topics.

62.2 % male;

Association between IN and:

44 % designated their degree of being informed about CAM as poor or very poor.

Mean age (range) was 60.1 (18–81) years;

• age

24 % of the patients neither used CAM nor were interested in consultation, 24 % did not use CAM but now requested information on this field.

Mean (SD, range) time since cancer diagnosis was 34.8 (42.6, 0–239) months;

• health status

59 % rated CAM as important or very important for themselves.

Frequent tumors: gastrointestinal system (20.8 %), breast (17.5 %) and lymphatic organs (17.5 %); Metastases (37.2 %).

• knowledge

IN were significantly higher with decreasing age, lower degree of being informed and poorer health status.

Geraedts/Amhof (2008) [13]

To analyze gender differences in the demand for quality related information on health care providers.

Cross-sectional design.

Representative sample of German adults (N = 1523);

Health Survey using 5 point Likert scales assessing the demand for quality-related information on physicians and health care providers (10 items) and hospitals (33 items).

Extent of IN: demand for quality related information on health care providers.

Medical System

Respondents expressed a high demand for quality-related information on medical specialists (89 %), hospitals (82 %) and GP/dentist (80 %).

Quantitative analysis of predefined topics.

49 % male,

Association between IN and:

Regarding hospitals information needs were highest for qualification of physicians (98 %), cleanness (97 %), qualification of nursing staff (96 %), newest and best available treatments (96 %) and friendliness of staff (96 %).

Age range was 18–79 years.

• age

Among all socio demographic variables considered, gender exerted the strongest influence on the responses. Women in comparison to men expressed a higher demand for quality-related information on health care providers, chose health care providers differently to some extent, and rated a multiplicity of criteria used to make a quality-oriented choice of hospitals more important than men. Hardly any significant differences were found for the factor age.

• gender

Heesen et al. (2007) [14]

To analyze the prerequisites for patient participation in decision making in patients with multiple sclerosis (MS).

Cross-sectional design.

169 multiple sclerosis (MS) patients;

Survey, no details given.

Topics of interests.

No details given.

Main interests related to alleviation of symptoms and magnetic resonance imaging, followed by knowledge about relapses, steroids and complementary medicine (CAM).

No details given.

No details given.

Association between IN and:

Interests were largely influenced by disease stage and course (relapse-remitting vs. primary-progressive) and knowledge.

• course of disease

• knowledge

Himmel et al. (2005) [15]

To analyze the information requests of patients visiting an internet expert forum on involuntary childlessness.

Cross-sectional design.

513 answers from participants;

Questionnaire comprising 22 items (free text) related to reasons for visiting the website and the expert forum, the use of the information, the satisfaction with the experts’ answers and actual treatment situation.

Topics of interests.

Not specified a priori.

Reasons for visiting the website:

Qualitative study.

99.2 % female;

Open ended questions.

72.9 % General information about involuntary childlessness, conception, or an evaluation of drugs

Age range was 18–43 years.

45.1 % Current treatment

32.1 % Different treatment options

25.5 % Causes of infertility

22.0 % Diagnostic data

7.7 % Other

Jungbauer et al. (2008) [16]

To investigate the need for professional assistance in carers of stroke patients and how this need changes in the course of rehabilitation.

Longitudinal design.

Ten highly burdened spouses of stroke patients;

Spouses of stroke patients were interviewed twice: at the beginning of in-patient rehabilitation period (T1) and one year later during the outpatient rehabilitation (T2).

Extent of IN: desire of disease-related information.

Not specified a priori.

At the beginning of in-patient rehabilitation period, carers requested mainly disease-related information (e.g. about stroke, its prognosis, treatment and rehabilitation possibilities). Active provision of disease-related information by medical staff was desired.

Qualitative study.

40 % male;

Interviews were analyzed using Grounded Theory coding procedures.

Topics of interest.

The desire for further disease-related information was seldom mentioned one year later during the out-patient rehabilitation period, whereas the need for emotional assistance increased. The need for information was more pronounced in female participants, who also requested such information more actively.

Mean age was 61 years.

Open ended questions.

Association between IN and:

• duration of disease

• gender

Knelangen et al. (2010) [17]

To identify the potential need for evidence-based health information.

Cross-sectional design.

Endometriosis:

Two online surveys.

Topics of interest.

Aetiology

Most interesting topics for endometriosis (rated as very interesting) were consequences (79 %), causes (73 %) and CAM (70 %).

Quantitative analysis of predefined topics.

754 participants (73 % concerned, 8 % relatives);

Different information categories were assessed using a 6-point Likert scale with response categories from 1 = very interesting to 6 = not interesting at all.

CAM

Regarding skin cancer screening the topics self-diagnosis (83 %), self-protection (65 %) and causes/risk factors (59 %) were rated as very interesting most frequently.

8 % male;

In addition open-ended questions were used.

Coping

Age range was 16–76 years.

Diagnosis

Skin cancer screening and prevention:

Prevention/ health promotion

265 participants;

Prognosis

43 % male;

Social life

Age range was 16–79 years.

Treatment

Maywald et al. (2005) [18]

To evaluate unmet drug information needs in patients.

Cross-sectional design.

3316 inquiries from a catchment area covering 500.000 inhabitants;

All inquiries within 36 months were analysed via a standardized answer sheet to determine the type of counselling demand.

Topics of interest.

Not specified a priori.

The questions were mainly related to adverse drug reactions and interactions (26.6 %) as well as to common information on efficacy of specific therapies (27.2 %). Questions about (contra-) indication, self-medication, application/dosage, financial and legal questions were less frequent (<10 % respectively).

Quantitative analysis of inquiries to a drug information service.

33.8 % male;

Open ended questions.

64.5 % were over 60 years old.

Nickel et al. (2010) [19]

To explore the information needs of people dependent on care and their informal caregivers.

Cross-sectional design.

89 participants: 38 (43 %) information seeking family members, 17 (19 %) patients, 2 (2 %) patient’s friend, 1 (1 %) legally appointed carer; situation was not specified for 31 persons (35 %).

Semi-structured questionnaire which was analysed by qualitative content analysis

Topics of interest.

Not specified a priori.

Four major topics of IN were identified:

Qualitative study.

Information on health care system: 30 (27.8 %)

Information on individual access options to health care system: 31 (28.7 %)

Information on regional service provider: 17 (15.8 %)

Context-specific and disease-specific questions: 30 (27.8 %)

Neumann et al. (2011) [20]

To identify and predict subgroups of IN among cancer patients.

Cross-sectional design.

326 cancer patients suffering from bronchial (n = 28), oesophagus (35), colorectal (18), breast (109), prostate (54) and skin cancer (68);

A cancer-specific instrument for the German health system was developed: Cancer Patients Information Needs (CaPIN) measure consisting of 23 dichotomous items (yes/no) regarding the question "Looking back on your hospital stay, would you have liked more information about...."

Extend of IN: proportion of people with unmet IN.

Coping

Highest information needs (% yes) for the categories: methods of health promotion (54.2 %), medical examination results (47.7 %), nutrition (45.2 %), diagnosis and progress of cancer (43.3 %) and other treatment options (41.2 %).

Quantitative analysis of predefined topics.

52 % male;

Latent Class Analysis (LCA) was used to identify subgroups sharing similar information needs.

Topics of interest.

Diagnosis

Five subgroups were identified with LCA: No unmet IN (31.4 %), high level of psychosocial IN (27 %), high level of purely medical IN (16 %), high level of medical and psychosocial IN (13.6 %) and high level of psychosocial IN (12 %).

Mean age (SD, range) was 58.7 (11.2, 19–76) years.

Association between IN and:

Financial/legal

Most significant predictors for class membership were "trust in nurses", "caring attention from nurses" and "physician empathy", indicating fewer unmet IN. A higher age and no requirement of psychological support were also statistically significant predictors indicating fewer unmet IN.

• age

Nutrition

• caring attention from nurses

Prevention/ health promotion

• course of disease

Prognosis

• education

Social life

• gender

Treatment

• physician empathy

• requiring psychological support

• trust in nurses

• working status

Oskay-Özcelik et al. (2007) [21]

To explore breast cancer patients' information needs with a special focus on doctor-patient communication.

Cross-sectional design.

N = 617 cancer patients (552 via online questionnaire, 65 via hard copy);

Online or hard copy questionnaire with 62 items in multiple choice format.

Topics of interest.

No details given.

Most frequent answers for information needs were:

Quantitative analysis of predefined topics.

Median age (range) 48 (21–92) in the online group, 55 (40–92) in the hard copy group.

Question to explore information needs:

1) Am I getting the right therapy (89 %)?

65 % with curative treatment.

'What do you think are the three most important items of information regarding your illness and its treatment?'

2) How many patients with my condition does my doctor treat (46 %)?

3) Can I be enrolled into a trial (46 %)?

Richter et al. (2011) [22]

To analyze inquiries sent to an online ask-the-doctor service on a rheumatology website.

Cross-sectional design.

1133 inquiries of patients (60 %), relatives (24.3 %) and physicians (15.7 %);

Content analysis of web-based inquiries.

Topics of interest.

Not specified a priori.

Inquiries were most frequently related to the following topics: medication(indication, effects, side effects) (30.8 %), contact to a rheumatologist nearby (24.9 %), diagnosis-related questions (15.7 %), second opinion (11.6 %).

Quantitative analysis of inquiries sent to an ask-the-doctor service.

37.8 % male;

Open ended questions.

Relatives addressed different topics and issues than patients.

Mean age reported by 113 patients (SD, range) was 37.8 (12.6, 17–72) years.

Steckelberg et al. (2004) [23]

To explore consumers' information needs and attitudes for informed choice on colorectal cancer screening.

Cross-sectional design.

50 participants, recruited by announcements in local newspapers;

Focus group discussion, questionnaire with semi-structured questions and open ended questions.

Extent of IN: rating of topics.

Not specified a priori.

The six most relevant topics: screening methods in general (1.5 ± 1.1) , therapy of colorectal cancer (1.8 ± 1.4), prevention of colorectal cancer (1.9 ± 1.5), nutrition (1.9 ± 1.4), symptoms of colorectal cancer (2.0 ± 1.1), anatomy and physiology (2.0 ± 1.0).

Qualitative study to explore possible relevant topics of interest.

30 % male;

Relevance of identified topics were rated with a 6-point Likert scale (1 = high relevance, 6 = low relevance).

Topics of interest.

Diagnosis

Least relevant topic was sponsoring (2.9 ± 1.6).

Quantitative analysis of identified and clustered topics.

Mean age (SD) was 59 (10.6) years;

Nutrition

34 participants have taken part in colorectal cancer screening before.

Relevance of identified topics were rated with a 6-point Likert scale (1 = high relevance, 6 = low relevance).

Prevention

Treatment

Thon/Ullrich (2009) [24]

To assess sources of information and information needs in parents of children with a rheumatic disease.

Cross-sectional design

116 families continuously attending a paediatic rheumatology outpatient clinic;

Questionnaire with a 4-point Likert scale for 15 pre-selected topics/items regarding

Extend of IN: interest in further information.

Aetiology

Overall, parents considered themselves well-informed. However, their interest in further information was high almost irrespective of the amount of prior information. Three main response patterns were identified:

Quantitative analysis of predefined topics.

31 % male (children);

1) the amount of prior information and

Topics of interest.

CAM

1) topics covered by prior information which were nonetheless of high interest: aetiology, prognosis, treatment and adverse effects;

Mean age (SD) of children was 6.9 (4.3) years;

2) the amount of interest in further information.

Association between IN and:

Prognosis

2) topics with low prior information and of high current interest: complementary and alternative medicines (CAM), psychological impact, inpatient rehabilitation facilities, educational/vocational rehabilitation;

Mean duration of disease was 2.6 (4.3) years.

Items were summed up in a information score and a interest score.

• knowledge (prior information)

Rehabilitation

3) topics with low prior information, but only moderate to low interest: entitlements for disabled people, implications on partnership and sexuality.

Social life

Treatment

Ullrich et al. (2003) [25]

To explore the information needs of parents of children with juvenile idiopathic arthritis (JIA).

Cross-sectional design.

118 parents of 121 children with JIA attending a paediatric rheumatology outpatient clinic;

Questionnaire with a 10-point Likert scale for the importance of detailed information about the JIA in general and the satisfaction of information provision.

Extent of IN: proportion of people with unmet IN.

Aetiology

All parents considered detailed information as very important (mean = 9,52; max = 10). The majority felt being well-informed, although 80 % mentioned at least one issue of further IN.

Quantitative analysis of predefined topics and extent of unmet IN.

39 % male (children);

Parents could suggest a topic of interest in a free text. Additionally, they were asked to select (dichotomous question) predefined topics to which they would like more information.

Topics of interest.

CAM

Pre-defined topics with highest interest were aetiology (76,7 %), nutrition (72,2 %), side effects of drugs (70,1 %) and alternative medicines (69,8 %). Topics with lowest interest were self help (26,1 %) and psychological consultation (24,8 %). Parents were more satisfied with their physician and felt better informed had significantly fewer unmet IN.

Mean age (SD) of children 10.3 (4.5) years;

Association between IN and:

Coping

In the free text section the topics prognosis and course of disease were mentioned most frequently. Topics differed dependent on the age of the children.

Mean duration (SD) of disease 4.3 (3.2) years.

• age of children

Diagnosis

24 % male (parents)

• knowledge (degree of being informed)

Nutrition

Mean age (SD) of parents was 39.2 (6.8) years.

• satisfaction with physician

Prognosis

Rehabilitation

Social life

Treatment

Vogel et al. (2008) [26]

To assess patients' information needs and experiences in the course of breast cancer treatment.

Longitudinal design.

135 women with first breast cancer diagnosis and no evidence of metastases;

Questionnaire with 8 items rated on a 5-point scale (5 = high IN; 1 = low IN) to assess information needs at the beginning of initial treatment with two follow-ups at 3 and 6 months

Extent of IN: rating of topics.

Diagnosis

Information needs were highest for treatment (4.1), and diagnosis (4.0) at baseline and highest for aftercare (4.0) and treatment (3.8) at 6 months follow-up.

Quantitative analysis of predefined topics.

Mean age (SD, range) was 53,9 (10.9, 19–75) years.

Topics of interest.

Prognosis

Information needs for all topics decreased over time, except aftercare.

Social life

Information needs for examination and medical tests did not change significantly over time.

Treatment

Vogt/Schäfer (2011) [27]

To identify counseling topics relevant to young women about combined oral contraceptives (COC).

Cross-sectional design.

30 selected women from a representative research panel;

Online questionnaire including a list of 25 potential counselling items(risks, benefits and fears).

Extent of IN: rating of topics

Treatment

The mean rating of interest for all 25 potential counselling items was 5. Items with high interest ratings (mean and CI ≥4) which were also seen as mandatory items in counselling were cervical cancer risk, change in sexual desire, depressed mood, sub fertility after discontinuation, weight gain, benign breast disease, pelvic inflammatory disease, dysmenorrhoea and acne.

Qualitative and quantitative analysis of predefined topics.

Median age (range) was 20 (18–24) years.

Interest in various topics was rated on a 7-point Likert scale (1 = no interest; 7 = high interest).

Association between IN and:

No trend was observed for interest ratings dependent on different educational levels. Women who had no experience with usage of COC tended to report higher interest levels than current or past users. The relationship between interest and knowledge ratings about risks and benefits of combined oral contraceptives showed no clear trends

• education

• experience

• knowledge

Wildner et al. (2002) [28]

To assess citizens' perspective of patients' perceived IN.

Cross-sectional design.

Representative sample of general population (n = 3008);

CATI with trained interviewers.

Extent of IN: proportion of people with unmet IN.

Not specified a priori.

Of the 3008 people interviewed 1043 (35 %) said they had some kind of IN, 1437 (48 %) had no IN, 73 (2 %) did not answer and 455 (15 %) were not sure.

Qualitative analysis of relevant categories of IN.

38.7 % male;

Responses to open ended questions were categorized.

Topics of interest.

Top five categories (n = 1043): musculoskeletal diseases 18.1 %, prevention/health promotion 15.4 %, cardiovascular diseases 8.2 %, cancer 5.9 % and sickness funds 5.8 %.

Age was ≥18 years.

Association between IN and:

Younger people and people who received no medical care had significantly higher needs for information on prevention and health promotion. Gender differences were mentioned but were not obvious.

• age

• gender

• patient status