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Eliciting the impact of digital consulting for young people living with long-term conditions (LYNC Study) : cognitive interviews to assess the face and content validity of two patient-reported outcome measures
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Sturt, Jackie, Dliwayo, Thandiwe Rebecca, Forjaz, Vera, Hamilton, Kathryn, Bryce, Carol, Fraser, Joseph and Griffiths, Frances (2018) Eliciting the impact of digital consulting for young people living with long-term conditions (LYNC Study) : cognitive interviews to assess the face and content validity of two patient-reported outcome measures. Journal of Medical Internet Research, 20 (10). e268. doi:10.2196/jmir.9786 ISSN 1438-8871.
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Official URL: http://dx.doi.org/10.2196/jmir.9786
Abstract
Background
Digital consulting, using email, text, and Skype, is increasingly offered to young people accessing specialist care for long-term conditions. No patient-reported outcome measures (PROMs) have been evaluated for assessing outcomes of digital consulting. Systematic and scoping reviews, alongside patient involvement, revealed 2 candidate PROMs for this purpose: the patient activation measure (PAM) and the physician’s humanistic behaviors questionnaire (PHBQ). PAM measures knowledge, beliefs, and skills that enable people to manage their long-term conditions. PHBQ assesses the presence of behaviors that are important to patients in their physician-patient interactions.
Objective
This study aimed to assess the face and content validity of PAM and PHBQ to explore whether they elicit important outcomes of digital consulting and whether the PROMs can isolate the digital consultation component of care.
Methods
Participants were drawn from 5 clinics providing specialist National Health Service care to 16- to 24-year-olds with long-term health conditions participating in the wider LYNC (Long-Term Conditions, Young People, Networked Communications) study. Overall, 14 people undertook a cognitive interview in this substudy. Of these, 7 participants were young people with either inflammatory bowel disease, cystic fibrosis, or cancer. The remaining 7 participants were clinicians who were convenience sampled. These included a clinical psychologist, 2 nurses, 3 consultant physicians, and a community youth worker practicing in cancer, diabetes, cystic fibrosis, and liver disease. Cognitive interviews were transcribed and analyzed, and a spreadsheet recorded the participants’ PROM item appraisals. Illustrative quotes were extracted verbatim from the interviews for all participants.
Results
Young people found 11 of the PAM 13 items and 7 of the additional 8 PAM 22 items to be relevant to digital consulting. They were only able to provide spontaneous examples of digital consulting for 50% (11/22) of the items. Of the 7 clinicians, 4 appraised all PAM 13 items and 20 of the PAM 22 items to be relevant to evaluating digital consulting and articulated operationalization of the items with reference to their own digital consulting practice with greater ease than the young people. Appraising the PHBQ, in 14 of the 25 items, two-thirds of the young people’s appraisals offered digital consulting examples with ease, suggesting that young people can detect and discern humanistic clinician behaviors via digital as well as face-to-face communication channels. Moreover, 17 of the 25 items were appraised as relevant by the young people. This finding was mirrored in the clinician appraisals. Both young people and the clinicians found the research task complex. Young participants required considerably more researcher prompting to elicit examples related to digital consulting rather than their face-to-face care.
Conclusions
PAM and PHBQ have satisfactory face and content validity for evaluating digital consulting to warrant proceeding to psychometric evaluation. Completion instructions require revision to differentiate between digital and face-to-face consultations.
| Item Type: | Journal Article | ||||||
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| Subjects: | R Medicine > RJ Pediatrics | ||||||
| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Youth -- Diseases -- Treatment, Youth -- Health and hygiene -- Services for, Electronic mail messages, Text messages (Cell phone systems), Skype | ||||||
| Journal or Publication Title: | Journal of Medical Internet Research | ||||||
| Publisher: | Journal of Medical Internet Research | ||||||
| ISSN: | 1438-8871 | ||||||
| Official Date: | 11 October 2018 | ||||||
| Dates: |
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| Volume: | 20 | ||||||
| Number: | 10 | ||||||
| Page Range: | e268 | ||||||
| DOI: | 10.2196/jmir.9786 | ||||||
| Status: | Peer Reviewed | ||||||
| Publication Status: | Published | ||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||
| Date of first compliant deposit: | 23 November 2018 | ||||||
| Date of first compliant Open Access: | 23 November 2018 | ||||||
| RIOXX Funder/Project Grant: |
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