Information needs

Study IDParticipantsSettingStudy designType of InformationFindings / Conclusions
Action for M.E., 2001221N= 2338 members of Action for M.E.
% female = 81

Inclusion Criteria:
not stated
All 7529 members received survey questionnaire.

Age:
Other (specify): 10% of respondents were aged under 18. At the time of onset of M.E., 39% were aged between 26 and 40 and 38% were aged between 41 and 65.

Duration of illness:
not stated

Baseline functioning:
baseline/severity: Of the 2338 respondents, 30% described themselves as severely affected and 5% were very severely affected (bedridden and dependent on others for care).

Subgroups:
Severity
UK

Community Members of Action for M.E.
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method: Questionnaire (filled out anonymously)

Evaluated:
other: Advice from GPs on managing the illness

Service provided by:
Healthcare professionals
The majority of respondents (65%) received no advice from their GP on managing their illness; 19% received advice within 6 months and 17% after more than 6 months. 41% felt that this lack of information contributed to their illness becoming more severe or chronic.
Action for M.E., 2003222N= 283 (out of 550) returened a ‘Your views’ questionnaire; 354 (out of 550) returned a ‘Your experiennces’ questionnaire.

% female = 82

Inclusion Criteria:
Incl crit: Randomly selected sample

Age:
range: 72% aged between 35 and 65 years

Duration of illness:
Other (specify): Half have been ill for more than 10 years

Baseline functioning:
baseline/severity: Just over half (54%) described themselves as moderately affected.

Subgroups:
n.a.
UK

Community Action for M.E.
Survey Survey of 1100 members of UK patient group.

Aim: Needs assessment

Level of Evidence:
3
Assessment method:
Questionnaire (filled out anonymously)
Not stated whether questionnaire was anonymous

Evaluated:
other: Information provision by Action for M.E. and health professionals.

Service provided by:
Healthcare professionals

Other:
Action for M.E.
A high percentage (85%) considered that the organisation’s magazine provided them with useful information.
Over 70% of respondents wanted more information on medicines, complementary therapies, symptoms and their management, welfare benefits and practical issues. A high percentage wanted more information on pacing (84%). About two-thirds of respondents felt that the charity should provide more information on graded exercise and cognitive behavioural therapy, although 23% disagreed. Some 90% believed that health professionals should be provided with more information about the illness
Akid, 2002228N= 76 (2004 survey)
% female not stated

Inclusion Criteria:
Incl crit: 2004 Survey: Patients (and carers of child patients) receiving support from the Stockport M.E. Outreach Nurse Service. Effectiveness evaluation: Patients only, other incl. crit not stated

Age: not stated

Duration of illness:
Other (specify): 2004 Survey: <1 year 3%; 1 year 13%; 2 years 20%; 3–5 years 28%; 6–8 years 13%; >9 years 24%

Baseline functioning:
baseline/severity: 2004 Survey: Self-reported severity: 10% mild; 51% moderate; 32% severe; 7% very severe

Subgroups:
n.a.
UK

Community Stockport M.E. outreach nurse service
Survey

Before-after study exact design features unclear, symptoms of patients with access to the nurse service were monitored for a year

Aim:
Needs assessment

Level of Evidence: 3
Assessment method:
Questionnaire (filled out anonymously)
Annual patient/carer questionnaires

Evaluated:
other: Written information provided by specialist nurses and information/advice provided by medical professionals Stockport M.E. Outreach Nurse Service

Service provided by:
Healthcare professionals Specialist nurses
In a questionnaire survey of users of the Stockport M.E. Outreach Nurse Service (76 respondents), 99% had received written information from the nurse; 72% regarded this information as very useful and 28% as quite useful. Prior to contact with the service, 33% reported that they had received significant advice from a medical professional about their illness, while 67% had received no advice. Thirteen respondents rated information from medical professionals as very helpful, 8 as quite helpful and 7 as not helpful.
To improve the service, respondants suggested training form consultants, GPs, nurses, social services etc., GPs should be more aware of the service, a video on CFS/ME management techniques / audio tape or CD information, a website and email contact.
Åsbring, 2003232Healthcare professionals

N= 26 (half of these were interviewed about CFS)

% female = 46

Inclusion Criteria:
Incl crit: Physicians were involved in treating women included in an earlier study.

Age:
mean: 50
range:
41–67

Duration of illness:
n.a.

Baseline functioning:
n.a.

Subgroups:
n.a.
Sweden

Primary care

Secondary care
Various specialties, e.g. rheumatology, infectious diseases, rehabilitation, internal medicine and neurology
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Semi-structured interview

Evaluated: other:
Doctors’ knowledge and need for information about CFS.

Service provided by:
Healthcare professionals
The doctors expressed a need for more information about how to manage patients with CFS and pointed out gaps in medical training.
Ax, 1997223N= 18

% female = 78

Inclusion Criteria:
Incl crit: Diagnosis of ME, CFS or Post Viral Fatigue Syndrome.

Age:
mean: 44.4
range: 16–68yrs

Duration of illness:
mean (yrs): 7.8
range: 1–19yrs

Baseline functioning:
baseline/severity:
4 participants worked full time, 3 worked/went to college part time

Subgroups:
n.a.
UK

Community London based M.E. support groups
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Semi-structured interview

Evaluated:
other:
The interview covered the satisfaction with the perceived medical support.

Service provided by:
Healthcare professionals

n.a.
Most respondents (16/18) thought the emotional and informational support from GPs and/or specialists after CFS had been diagnosed was not adequate and they felt ‘unsupported and lost’.
CFS/ME Working Group, 2002 {#11272 }Healthcare professionals Chief Medical Officer

Number n.a.

% female n.a.

Inclusion Criteria:
n.a.

Age:
n.a.

Duration of illness:
n.a.

Baseline functioning:
n.a.

Subgroups:
n.a.
UK

Other:
UK
NHS
Other: Working group report to the Chief Medical Officer

Aim:
Needs assessment

Level of Evidence:
4
Assessment method:
Other (specify): Working group review of the evidence and agreement of recommendations.

Evaluated:
other: Information and education needs of patients and healthcare professionals.

Service provided by:
Healthcare professionals
The report makes the following recommendations:
  1. Healthcare professionals need sufficient awareness, understanding and knowledge of CFS/ME. Healthcare workers who feel they need extra skills should seek help from those experienced in the field.
  2. Clinicians must give appropriate and clear advice, based on national guidance to those involved in providing or assessing the patient’s employment, education, social care, housing, benefits, insurance and pension.
  3. The education and training of healthcare professionals should include CFS/ME.
  4. Healthcare professionals should receive postgraduate education and training about CFS/ME.
  5. GPs and medical specialists should at least be able to offer basic guidance about CFS/ME after diagnosis.
  6. Awareness and understanding of the disease needs to be increased among the general public through schools, the media, employers, agencies and government departments.
Clarke, 2000224N= 60

% female = 68

Inclusion Criteria:
Incl crit: Members of support groups who were willing to take part in the study

Age:
mean: 45 (‘average age’)
range: 18–80

Duration of illness:
not stated

Baseline functioning:
baseline/severity: 20% worked part-time, 80% were unemployed, retired or on sick leave

Subgroups:
Other subgroups: Gender
Canada

Community Support groups
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Semi-structured interview Interviews conducted by telephone

Evaluated:
other: Information from doctors and self-help groups

Service provided by:
Healthcare professionals
Seventy-eight per cent of male respondents and 70% of women regarded a local support group as a reliable source of information, compared with 44% of men and 22% of women who regarded a physician in this way.
Cooper, 2000225N= 347 respondents out of 730 surveyed

% female = 76

Inclusion Criteria:
not stated

Age:
range: 11yrs-over 70yrs. A third of respondents were aged 40–50yrs.

Duration of illness:
range: 0yrs to over 20yrs.

Baseline functioning:
baseline/severity:
The majority of respondents rated their illness severity as moderate (46%), with 34.4% describing their illness as severe/very severe and 19.7% as mild.

Subgroups:
n.a.
UK

Other:
ME support groups.
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Questionnaire (filled out in the presence of researcher)

Evaluated:
other: Respondents were asked to rate the helpfulness (not helful, moderately helpful, very helpful) of different sources of information including press articles, web sites, written information, magazine articles, research and advice lines.

Service provided by:
n.a.
Around 50% of respondents found advice lines and written resources as the most helpful sources of information. Press articles and web sites were found to be the least helpful.
Deale, 2001229N= 68

% female = 63

Inclusion Criteria:
Incl crit: Meeting UK criteria for CFS

Age:
mean: 38.3
SD: 9.8

Duration of illness:
mean (yrs): 4.2 (SD 4.9)

Baseline functioning:
not stated

Subgroups:
Other subgroups:
Gender
UK

Tertiary care Hospital fatigue clinic
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Questionnaire (filled out anonymously)

Evaluated:
other: Patient perceptions of doctors’ advice

Service provided by:
Healthcare professionals
The majority of respondents felt that the doctors consulted did not know about CFS (79%) and had not given enough advice about managing CFS (81%). The authors concluded that there is a need for better education and training of doctors in the diagnosis and management of CFS and allied conditions.
Everett, 2002235Other: Teachers

N= 12

% female n.a.

Inclusion Criteria:
Incl crit: Teachers.

Age:
n.a.

Duration of illness:
n.a.

Baseline functioning:
n.a.

Subgroups:
Age
Teachers opinions about adolescents with CFS.
UK

School/workplace Three schools in the Oxfordshire area.
Other: Qualitative study of small focus group of teachers.

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Other (specify): The focus group were asked a series of open ended questions.

Evaluated:
other: Information requirements of teachers and schools with regard to students with CFS.

Service provided by:
Other: School, teachers.
There was a need for teachers and schools to be provided with sound scientific and practical information about CFS. In addition respondents wanted further information from health professionals and others as to how best to support students with CFS.
Jason, 1994230N= 984
% female = 90

Inclusion Criteria:
Incl crit:
Respondents to survey published in CFIDS
Chronicle

Age:
mean: 44 yrs (‘average’)

Duration of illness:
not stated

Baseline functioning:
baseline/severity: 73% of respondents were not working and 47% were receiving disability benefits

Subgroups:
not stated
USA

Community
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Questionnaire (filled out anonymously)

Evaluated:
Group education (peer led)

other: Needs for housing, support and services

Service provided by:
Healthcare professionals

Other:
Social services
Regular self-help groups providing accurate and up-to-date information were rated as desirable by respondents (4.5 on a 5-point scale). Respondents also supported the idea of telephone services providing information about benefits, community resources and peer counseling opportunities. The participants also supported providing community members and legislators, as well as the medical community, with information about CFS/ME.
Osborne, 2000231Patients
Number not stated
At least 10
% female not stated

Inclusion Criteria:
not stated

Age:
not stated

Duration of illness:
not stated

Baseline functioning:
not stated

Subgroups:
Other subgroups:
Black and ethnic minority people.
UK

details not stated
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Interview

Evaluated:
other: Perceptions of life with CFS/ME explored.

Service provided by:
Healthcare professionals
A summary of qualitative interviews showed a general lack of understanding and knowledge about ME/CFS amongst medical professionals, government agencies and people in general was identified. Respondents highlighted problems in getting advice from medical professionals due to their lack of knowledge. In addition respondents reported that family members did not have access to information about the illness in their own language and often information from support agencies was Eurocentric, based on white middle class experiences.
Royal College of Paediatrics and Child Health, 2004236Healthcare professionals
Paediatricians
Number n.a.
% female n.a.

Inclusion Criteria:
Incl crit:
Children and young people with CFS/ME.

Age:
range: 0–18yrs

Duration of illness:
n.a.

Baseline functioning:
n.a.

Subgroups:
Age
Children and young people
UK

Other:
All areas of care
Other:
Evidence based guideline

Aim:
Needs assessment

Level of Evidence:
4
Assessment method:
Other (specify): Delphi consensus

Evaluated:
other: Needs of patients and paediatricians
Health professionals provision of information for patients and carers

Service provided by:
Healthcare professionals
Paediatricians
The report recommends that patients should:
  1. Be supported in finding out more about their condition but cautioned about the quality of some of the information in the public domain
  2. Be encouraged to discuss information provided by patient support groups with their healthcare provider.
Also paediatricians should be aware of guidance from the Department for Education and Skills on education for children and young people with medical needs or equivalent statutory guidance
Schoofs, 2004226N= 16 respondents were interviewed out of a total of 46 returned questionnaires.
% female = 31 (questionnaire)

Inclusion Criteria:
Incl crit: Respondents must be 18yrs or older and have been given a diagnosis of fibromyalgia (FM) or CFS by a healthcare provider. All respondents belonged to local or web-based support groups.

Age:
mean: 48yrs (SD=13.98)(questionnaire).

Duration of illness:
not stated

Baseline functioning:
not stated

Subgroups:
n.a.
USA

Community 3 local and web-based support groups
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Questionnaire (filled out anonymously)

Interview
Telephone

Evaluated:
other: Effects of social and healthcare support on quality of life

Service provided by:
Healthcare professionals and others
Carers
Although several limitations were identified for the study, respondents identifed that healthcare providers require further information and training about FMS/CFS and more information on FMS and CFS is needed in medical and nursing textbooks.
Stark, 1998227N= 62
% female = 56

Inclusion Criteria:
not stated

Age:
median: 42yrs
range: 14–75yrs

Duration of illness:
mean (yrs): 6
range: 1–22yrs

Baseline functioning:
not stated

Subgroups:
n.a.
Germany

Community Support group
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Other (specify):
Summary of statements made at support group meetings. Authors also mention 900 phone consultations were carried out.

Evaluated:
other:
Experiences with medical institutions.

Service provided by:
Healthcare professionals
Respondents thought there was a lack of physicians who were familiar with CFS. Physician’s were criticised for having a substantial deficit of information about CFS.
The National Task Force on CFS/ME, 1998233Healthcare professionals
Service commissioners, service providers and trainers of healthcare professionals.

Number n.a.

% female n.a.

Inclusion Criteria:
n.a.

Age:
n.a.

Duration of illness:
n.a.

Baseline functioning:
n.a.

Subgroups:
n.a.
UK

Other:
NHS services
Other:
Report of guidance and recommendations on NHS services

Aim:
Needs assessment

Level of Evidence:
4
Assessment method:
Other (specify): A report based on two recently published independent reports from the National Task Force on CFS/PVFS/ME (1994) and the Medical Royal Colleges (1996).

Evaluated:
other: Information needs within NHS services

Service provided by:
Healthcare professionals NHS
The report recommends that NHS service commissioners and providers should:
  1. Develop and distribute accurate and appropriate written and electronic information for doctors and paramedical staff to raise awareness that treatments exist for CFS/ME and to enable the most effective use of existing resources.
  2. Make available accurate and appropriate written information for medical and paramedical staff to give to patients and their carers In addition the report recommends that the NHS Executive should develop a central body of information on CFS/ME.
Tucker, 2000{#1 1265}Patients

N= 474 questionnaire respondents (out of 750 distributed), 27 young people and 11 parents interviewed

% female = 83 (questionnaire respondents); 67% (interviews)

Inclusion Criteria:
Incl crit: Questionnaire was sent to all members of Association of Youth with ME (AYME)

Age:
Other (specify): Questionnaire respondents: 2% under 12; 1% 12–15; 42% 16–19; 33% over 20.
Interviews: 48% under 16, 52% over 16

Duration of illness:
Other (specify):
10% of girls and 14% of boys had experienced ME for 9 years or more, 29% of boys for 5 to 6 years, and 36% of girls and 32% of boys for 3 to 4 years.

Baseline functioning:
baseline/severity:
Self-assessed ability levels ranged from 0–9% to 90–100%, with the largest numbers between 60% and 79%.

Subgroups:
Age
Children and young people
UK

Community Members of CFS/ME support organisation
Survey

Aim:
Needs assessment

Level of Evidence:
3
Assessment method:
Questionnaire (filled out anonymously)

Semi-structured interview

Evaluated:
other: Information services provided by AYME

Service provided by:
Healthcare professionals

Other: Schools and education authorities
CFS/ME support organisation (AYME)
The authors concluded that members placed a high value on information services provided by AYME (magazine, annual conference, AYME office and website). 9% of questionnaire respondents used the website regularly and 18% did so occasionally. Several survey respondents were unaware of a telephone service on educational advice.

From: Appendix 1, Systematic Evidence Review to support the development of the NICE clinical guideline for CFS/ME in adults and children

Cover of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy)
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet].
NICE Clinical Guidelines, No. 53.
National Collaborating Centre for Primary Care (UK).
Copyright © 2007, Royal College of General Practitioners.

PubMed Health. A service of the National Library of Medicine, National Institutes of Health.