Background
Methods
Search strategy
Criteria for inclusion of studies
Data collection
Quality assessment
Data syntheses
Results
Study | Country | Number of people with CFS/ME* | CFS/ME illness | Age (years) | Female gender | Ethnicity and Socioeconomic status | |
---|---|---|---|---|---|---|---|
Duration (years) | Severity | ||||||
Anonymous 1997[13] | United States | 1 | NR | Moderate to severe | Adult | 100% | NR |
Sweden | 12 | 1 to 23 | A range: full time employed to sick leave, temporary disability or sickness pensions. | 32 to 65 | 100% | NR | |
Ashby et al 2006[27] | United Kingdom | 10 | 0.4 to 2 | NR | 8 to 16 | 70% | NR |
Blake 1993[14] | Canada | 1 | NR | Severe | 29 | 100% | Caucasian, well educated |
Carlsen 2003[22] | Norway | 5 | NR | NR | 23 to 67 | 80% | NR |
Canada | 59 | A range | 80% Severe; 20% moderate | 18 to 80 | 65% | Ethnicity NR; a range of education levels | |
Denz-Penhey 1993[18] | New Zealand | 10 | NR | NR | 6 to 18 | NR | NR |
Dumit, 2006[5] | United States | NR (180,000 on-line discussion postings) | NR | NR | NR | NR | NR |
Edwards et al 2007[8] | United Kingdom | 8 | <1 | Moderate to severe | 18 + | 100% | White British, Chinese and mixed; Socioeconomic NR |
Garralda & Rangel 2004[10] | United Kingdom | 28 | NR | Moderate to severe, but all at school or home tuition | 10 to 18 | 78% | A range of ethnicity and social class |
Gray & Fossey 2003[35] | Australia | 5 | 2 to 10 | Severe | 16 to 44 | NR | NR |
Green et al 1999[11] | United States | 44 | Mean 4.1 | NR | 18 to 57 | 89% | A range of ethnicity; socioeconomic NR |
Hammond 2002[34] | United Kingdom | 586 | NR | NR | NR | NR | NR |
Hoad 1994[15] | United Kingdom | 1 | 3 | Moderate | fifties | 100% | White British; Socioeconomic NR |
Horton-Salway 2004[28] | United Kingdom | 15 | NR | NR | NR | NR | NR |
Jackson 1994[31] | United Kingdom | 3 | 2 to 6 | Severe | 20 to 51 | 100% | NR |
Jason et al 1996[40] | United States, Canada, Mexico | 984 | NR | A range | 18 to 84 | 99% | NR |
Lee et al 2001[30] | Canada | 50 | NR | Severe | 20 to 64 | 56% | NR |
Moore 2001[37] | United States | 1 | 8 | Moderate | NR | 100% | Ethnicity NR; High education |
Ong et al 2005[19] | United Kingdom | 1 | 17 | Severe | NR | 100% | NR |
Prins et al 2004[32] | The Netherlands | 268 | 2 and more | NR | 18 to 60 | 78.5% | NR |
Rangel et al 2000[41] | United Kingdom | 25 | More than 3 | Severe | 12 to 20 | NR | NR |
Reynolds and Vivat 2006[26] | United Kingdom | 3 | 16 and more | Moderate to severe | 51 to 62 | 100% | White British; high education and 'home-maker' |
Richards et al 2006[33] | United Kingdom | 21 | More than 3 | Moderate to severe | 11 to 20 | 62% | NR |
Roche & Tucker 2003[23] | United Kingdom | ≈ 474 | A range | NR | 12 to 20 | NR | NR |
Schoofs et al 2004[29] | United States | 46 | NR | NR | 18 and more | 91% | NR |
Schweitzer et al 1995[36] | Australia | 47 | NR | Moderate to severe | 26 to 50 | 70% | NR |
Sutton 1996[17] | United Kingdom | 2 | 15 to 30 | Moderate to severe | NR | 50% | NR |
Taylor & Kielhofner 2003[12] | United States | 1 | 3 | Moderate | 28 | 100% | 2nd generation Irish immigrants; High education |
Taylor 2004[9] | United States | 47 | NR | Moderate to severe | mean 49 | 96% | A range of ethnicity and social class |
Weisstein, 2006[16] | United States | 1 | 26 | Extremely Severe | About 50 | 100% | Non- minority; High education |
United Kingdom | 17 | A range | Severe | 13 to 63 | 65% | NR |
Study | Study design, scope for expression of own needs in data collection1
| Data analysis, scope for identification of needs2
|
---|---|---|
Anonymous 1997 |
High: Narrative of own story, detailed, personal and angry account |
High: Reported without formal analysis |
Asbring 2002, Asbring 2004 |
Medium: Case study; semi-structured interviews (60-150 minutes) to describe the Participants' encounters with their health care providers and possibilities of practicing the participants' power; |
High: Thematic analysis using grounded theory, quotes presented |
Ashby et al 2006 |
Medium: Case study; interviews and Likert-style rating scales |
Medium: Content analysis; explicit interpretation by the authors, no quotes from participants |
Blake 1993 |
High: Narrative of own story |
High: Reported without formal analysis |
Carlsen 2003 |
Medium: Case study; in depth interviews (open interview guide) plus observation of and participation in self help group meetings, plus data from health professionals and social workers, |
High: Thematic analysis; quotes presented. |
Clarke 1999, Clarke & James 2003 |
Medium: Case study; open-ended semi-structured telephone interview |
High: Thematic analysis using constant comparative method, separately analysed for men and women; quotes presented. |
Denz-Penhey 1993 |
High: Case study; participative action research with cycles of planning, action, observation and reflection with collaboration and participation of the participants; Interviews, statements, field notes, journal entries and questionnaires |
Medium: ethnographic and action research; report of interpretation by the authors. |
Dumit 2006 |
High This study drew on entries from internet newsgroup postings (180,000 internet entries), fieldwork and published debates; first person accounts, already in the public domain in internet newsgroups. |
High. Thematic analysis conducted by the authors, early arguments submitted online and on scientific conferences and amended accordingly; quotes presented. |
Edwards et al 2007 |
Medium: Case study; in-depth semi-structured interviews (1-1.5 hours) |
High: Interpretative phenomenological analysis; quotes presented. |
Garralda & Rangel 2004 |
Medium: Case study; semi-structured interviews with children with CFS and their parents (also children with arthritis and emotional disorders), and standard questionnaires. Note: This review used only the data on children with CFS/ME |
Low: mostly statistical analysis of standardized questionnaire. (percentages and 3-group Kruskal-Wallis for categorical and Mann-Whitney for continuous data comparison). |
Gray & Fossey 2003 |
Medium: Case study; semi-structured interviews (purposive sampling, videotaped interviews between participants and OTs, then individual interviews) |
High: thematic analysis and quotes presented. |
Green et al 1999 |
Low: Case study; postal standardised questionnaires on stigma, satisfaction in intimate relationships, labelling and symptoms' intensity. |
Low: Statistical analysis (frequencies, percentages, correlations and Fisher's exact test) |
Hammond 2002 |
High: Case study; in-depth interviews with claimants and non-claimants of DLA, combined with DLA data set and data from a survey with people with CFS/ME (posted questionnaires). |
High: narrative analysis of in-depth interviews (quote reported); content analysis of DLA data set and posted questionnaires (percentages presented) |
Hoad 1994 |
High: Detailed narrative of own story. |
High: Reported without formal analysis |
Horton-Salway 2004 |
High: Case study; naturalistic design, in-depth interview with a group member, and ethnographic observation of monthly meetings of a CFS support group and the talk to the group by a clinical psychologist. |
High: Discursive analysis/thematic analysis; quotes reported. |
Jackson 1994 |
High: Case study; in-depth interview |
High: Discursive analysis; quotes reported. |
Jason et al 1996 |
Moderate: Questionnaire sent out with the CFIDS Chronicle Journal containing open-ended questions on suggestions for improving services to people with CFS; standardized questionnaire on subjects' preferences on health services use (items developed from in-depth interviews). |
Low: Descriptive statistics (frequencies, percentages, difference in means and standard deviations), factor analysis of the standardized questionnaire; quotes not reported. |
Lee et al 2001 |
High: Case study; semi-structured interview, observational data and process notes over the course of the interviews, complementary quantitative data |
High: Content and thematic analyses; quotes reported. Descriptive statistics of complementary data (percentages, means and standard deviations, medians), |
Moore 2001 |
Medium: Single case study; data collection not reported; unclear whether data was collected via naturalistic observation or interview. |
High: Narrative of the experience of a person with CFS/ME, reported by the researcher without formal analysis, with quotations. |
Ong et al 2005 |
High: Case study; collaborative story-building of experience the development of GP-client relationship, based on own stories of a doctor and a client with CFS/ME. |
High: Shared narrative of the experience by the two participants, commented by a researcher. |
Prins et al 2004 |
Low: Posted questionnaires with closed questions and scales |
Low: Means of social support compared between demographic and type of illness groups (CFS × others) and correlations. Changes in social support in a 14 month follow-up, MANOVA. |
Rangel et al 2000 |
Moderate: Case study; case notes of 25 children with CFS/ME, followed by scales and semi-structured interviews with both children and parents. |
Low: Description of mean and standard deviations; Mann-Whitney test, chi- square or Fish's exact tests to compare ill and recovered groups of children with CFS/ME |
Reynolds & Vivat 2006 |
High: Case study; in-depth semi-structured interviews |
High: Narratives analysis; quotes reported. |
Richards et al 2006 |
High: Case study; tape recorded semi-structured interviews with 21 adolescents and their parents, carried out in the participants' houses. |
High: content analysis with identification of themes; quotes reported. |
Roche & Tucker 2003 |
High: Case study; questionnaires posted to young people with CFS/ME and their carers, one-to-one interviews with members of CFS/ME action group |
High: Discourse analysis, quotes reported. |
Schoofs et al 2004 |
Medium: Case study; semi-structured telephone interview and standard questionnaires of general health and health-related quality of life (SF36), quality of life questionnaire and perceived social support (PSSS). |
High: Thematic analysis and descriptive categories using a comparative approach between participants with quotes reported. Bivariate correlations between scores of the questionnaires |
Schweitzer et al 1995 |
High: Case-control study of person with CFS/ME compared with 30 undergraduate controls; semi-structured interviews and standardised questionnaire about sickness impact 'Sickness Impact Profile' |
Medium: Thematic analysis of qualitative data, no quotes from participants. (Statistical results did not refer to expressed needs and were not extracted) |
Sutton 1996 |
High: Case study; semi-structured interview with patients and GPs. |
High: content analysis of interviews to identify themes and descriptive categories (quotes reported) |
Taylor & Kielhofner 2003 |
High: Case study; in-depth interview and standardised questionnaires |
High: Clinical interpretation of the case using patient's life history and information provided by scales of the domains of the MOHO. (quotes reported) |
Taylor 2004 |
Low: Randomised controlled trial using standardised measures about quality of life and symptom severity |
Low: repeated measures of ANOVA and regression analysis using random-effects to compare program and control conditions for two outcomes: quality of life and symptom severity. |
Weisstein 2006 |
High: Narrative of own story with detailed personal accounts presented, data not analysed, quotations reported |
High: Reported without formal analysis |
Whitehead 2006a; Whitehead 2006b) |
High: Case study; three one-to-one unstructured interviews over 2.5 years. |
High: (2006a) Hermeneutic phenomenological analysis, quotes reported. (2006b) Narrative analysis to identify typologies of restitution, chaos and quest; quotes reported. |