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Table 2 Risk of bias of included studies

From: The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review

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.
  1. 1 high, if own story, participative action research or naturalistic observation; medium, if in-depth interview; low, if standardised questionnaire.
  2. 2 high, if the paper presents participants' narratives or the study results present interpretations of narratives accompanied by quotes from participants; medium if interpretation was without quotes; and low if statistical analysis only.