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

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

The role of digital communication in patient-clinician communication for NHS providers of specialist clinical services for young people [the Long-term conditions Young people Networked Communication (LYNC) study]: a mixed-methods study

Background Young people (age 16-25 years) with long term health conditions tend to disengage from health services resulting in poor health outcomes. They are prolific users of digital communications. Innovative UK National Health Service (NHS) clinicians use digital communication with these young people. The NHS plans to use digital communication with patients more widely. Objectives To explore how health care engagement can be improved using digital clinical communication; understand effects, impacts, costs and necessary safeguards; provide critical analysis of its use, monitoring and evaluation. Design Observational mixed methods case studies; systematic scoping literature reviews; assessment of patient reported outcome measures; public and patient involvement (PPI); consensus development through focus groups. Setting Twenty NHS specialist clinical teams from across England and Wales, providing care for 13 different long term physical or mental health conditions. Participants 165 young people aged 16-25 years living with a long term health condition; 13 parents; 173 clinical team members; 16 Information Governance Specialists. Interventions Clinical teams and young people variously used: mobile phone calls, text messages, email, Voice over Internet Protocol. Main outcome measures Empirical work: thematic and ethical analysis of qualitative data; annual direct costs; Did Not Attend, Accident and Emergency Attendance and Hospital Admissions rates plus clinic specific clinical outcomes. Scoping reviews: patient, health professional and service delivery outcomes and technical problems. Patient reported outcome measures: scale validity, relevance and credibility. Data sources Observation, interview, structured survey, routinely collected data, focus groups, peer reviewed publications. Results Digital communication enables access for young people to the right clinician when it makes a difference for managing their health condition. This is valued as additional to traditional clinic appointments. This access challenges the nature and boundaries of therapeutic relationships but can improve them, increase patient empowerment and enhance activation. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information and communication failures, but clinicians and young people mitigate these risks. Workload increases, and staff time is the main cost. Clinical teams had not evaluated impact of their intervention, and analysis of routinely collected data did not identify any impact. There are no currently used generic outcome measures but the Patient Activation Measure and the Physician Humanistic Behaviour Questionnaire are promising. Scoping reviews suggest digital clinical communication is acceptable to young people but with no clear evidence of benefit except for mental health. Limitations Qualitative data was mostly from clinician enthusiasts. No interviews were achieved with young people who do not attend clinics. Clinicians struggled to estimate workload. Only eight full sets of routine data were available. Conclusions Timely digital clinical communication is perceived as making a difference to health care and health outcome for young people with long term conditions but this is not supported by evidence that measures health outcome. Such communication is challenging and costly to provide but valued by young people. Future work Future development should distinguish digital communication replacing traditional clinic appointments and additional timely communication. Evaluation is needed that uses relevant generic outcomes