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Table 2 Summary of approaches to tool development

From: Methodological approaches for conducting follow-up research with clinical trial participants: a scoping review and expert interviews

Approach used

Details

Quantitative studies

 

Use / adaptation of established/validated tools

Almeida, 2007 [21]

- Questionnaire based on the ones used by Bigorra and Baños and Van Gelderen et al. [44, 45]

- Use of NEO Personality Inventory (NEOPI-R), validated for the Portuguese population

Pflugeisen, 2016 [37]

- Review of available surveys (third-party vendor, internal departments, free online surveys)

Literature review, informed by previous studies

Au, 2015 [22]

- Literature review of previous surveys

- Satisfaction rating scales guided by evidence-base

Pflugeisen, 2016 [37]

- No further details provided

Informed by expert opinions, focus group discussions, etc.

Kost, 2014 [30]

- Survey themes based on FGDs with research participants and research professionals

Mello, 2018 [36]

- Questionnaire based on FGDs, consultation with experts and community advisory boards

Pflugeisen, 2016 [37]

- Brainstorming sessions with leadership team and research oversight committee of research institute

Yessis, 2012 [41]

- Questionnaire based on FGDs with research participants and professionals

Iterative development by researcher

DasMahapatra, 2017 [24]

- No further details provided

No information provided

Dayer, 2017 [25]

Henzlova, 1994 [27]

Johnson, 2008 [28]

Mathieu, 2012 [34]

Pope, 2003 [38]

Qualitative studies

 

Use / adaptation of established/validated tools

Cox, 2000 [23]

- Semi-structured interview supplemented with previously validated quality of life (QOL) questionnaires (EORTC QLQ C-30 and Hospital Anxiety and Depression Scale)

Kost, 2011 [29]

- Modified the general hospital survey around patients’ perceptions of hospital care established by National Research Corporation (NRC) Picker to assess perceptions of research participants

Literature review, informed by previous studies

Harrop, 2016 [26]

- Topic guide informed by findings of a previous sub-study

Wootten et al., 2011 [40]

- No further details provided

Informed by expert opinions, focus group discussions, etc.

Harrop, 2016 [26]

- Topic guide informed by clinical experience of PI

Zaharoff, 2018 [43]

- FDGs facilitated by support and advocacy organisations

Yoder, 1997 [42]

- Interview guides based on themes informed by patients, reviewed by clinical experts (physicians, clinical oncology nurses)

Iterative development by researcher

–

No information provided

Kvale, 2010 [31]

Lawton, 2003 [32]

Locock, 2011 [33]

Tutton, 2018 [39]

Mixed-method study

 

No information provided

Mattson, 1985 [35]