CPFF Robert Davidson Fellowships fill a gap in ILD care

After completing several research projects, Dr. Amanda Grant-Orser has finished her two-year CPFF Robert Davidson fellowship and secured a position as a clinical assistant professor at the University of Calgary. She will continue to conduct ILD research and provide care for PF patients.

A recent graduate of CPFF’s Robert Davidson Fellowship, Amanda Grant-Orser, told the CPFF Board during a presentation in June, that the CPFF fellowships provide a structure for ILD clinical practice and research that is not available in any Canadian residency training program.

“The research we do as CPFF fellows provides a national unity of ILD scholarship; builds a strong ILD community; and enables more physicians to become ILD specialists in more places across the country, increasing access to specialized patient care,” she explained. “In addition, it can be helpful on future grant applications, depending on their points system.”

During her presentation she also summarized three research studies and other endeavours she completed during her two-year fellowship. Her research includes: a study to understand stakeholders’ interests and concerns about genetic testing for ILD; a research summary of the current literature on pregnancy and ILD; and a study investigating whether patients and clinicians perceive clinical status the same, and explore if patients prefer in-person or telemedicine visits.

In addition, she contributed to nine research study abstracts, using data from the CARE-PF registry, which were presented at the American Thoracic Society conference in May 2023. Dr. Grant-Orser also completed a graduate diploma in clinical epidemiology from McMaster University while a CPFF fellow. Currently on maternity leave since the completion of her fellowship this March, she has secured a position as a clinical assistant professor at the University of Calgary.

Like all CPFF fellows, Dr. Grant-Orser also cared for patients; in her case at the Interstitial Lung Disease Program, University of Calgary. She saw patients two, half days per week and during a monthly connective tissue disease (CTD) ILD clinic. She also conducted in-patient consultations and covered off-hours patient management for acute decline, medication complications or renewals and shared care. She also participated in multi-disciplinary discussions (MDD) of individual cases every two weeks.

Dr. Grant-Orser’s first research project was published in the Annals of American Thoracic Society on the perceptions of genetic testing of ILD patients and their first-degree relatives. (First-degree relatives include parents, siblings and children.) Participants in her study included those who responded to her survey, which was promoted by CPFF. You can read more about this study in our October 2022 newsletter, which offers highlights of a webinar she presented during last year’s Pulmonary Fibrosis Awareness Month, titled: “Genetics and ILD: A Canadian Primer.”

The online survey included 188 respondents and 20 people took part in online focus groups to delve more deeply into their perceptions. 

Sixty-seven per cent of survey respondents said they would be interested in genetic testing to look for genes associated with ILD. Fifty percent did not know if there was a genetic cause to their own or a family member’s ILD. And 55 per cent worried that other family members could be affected by ILD.

Asked about how genetic testing could affect certain factors, 45 per cent were concerned about access to life, disability and travel insurance; 37 per cent were concerned about personal stress and anxiety; 52 per cent thought testing could affect their children’s and other family members’ health and 20 per cent thought testing may affect their health behaviors.

Near the end of the webinar, Dr. Grant-Orser also offers tips and considerations when deciding whether to undergo genetic testing, for those who are eligible.

An abstract of Dr. Grant-Orser’s second research project, “Pregnancy Considerations for Patients With Interstitial Lung Disease,” was published in the November 2022 issue of the journal Chest. It is a summary of the current scientific literature on pregnancy and ILD and covers: reproductive planning; monitoring; multi-disciplinary care; disease control; medication; delivery method and post-partum care.

In her third research project, Dr. Grant-Orser investigated “Patient and Physician Assessments of Clinical Status. A Mixed-method Study of Interstitial Lung Disease,” published last month in Chest Pulmonary. The study addresses the questions: Are patients’ self-assessments of their clinical status in agreement with their physicians’ assessments, and are telemedicine vs in-person visits acceptable?

Fifty patients were enrolled in the study from the U of C ILD clinic. Participants were asked by phone before the in-person appointment and after the appointment to rate their clinical status, which was eventually condensed to worse, stable, or better. Physicians then rated the patient’s clinical status after the appointment on a similar scale, without knowing the patient responses. Patients and physicians were asked if an in-person appointment was necessary, or if telemedicine would have sufficed (with the appropriate test results being available.)

Before the in-person appointment, assessments varied between the patient and physician. After testing and the in-person conversation, the rating of their condition by patient and physician were more similar. And although 58 per cent of doctors reported that a telemedicine call would be acceptable for the appointment (with appropriate test results available), 80 per cent of patients prefer an in-person appointment, primarily for its intangible benefits, such as relationship building.

“This is important data to guide our use of telemedicine for patients with ILD. Further studies, beyond patients from the Calgary clinic, would help verify our findings for a national guideline,” says Dr. Grant-Orser.

Dr. Grant-Orser continues to conduct research, including a systematic review of interstitial lung abnormalities (ILAs), a potential pre-cursor to irreversible fibrosis. “This is a fairly new area of research. Identifying those with ILAs may help us to mitigate those at future risk of PF through vaccines, smoking cessation, trigger avoidance and other lifestyle modifications,” says Grant-Orser.

She is also looking at ILD care pathways in Alberta, analyzing the current processes and suggesting improvements, which may prove informative across the country.

“Having the CPFF Robert Davidson Fellowship, is truly a boost to anyone’s early career and the only way ILD training and development is supported in Canada,” says Grant-Orser. “I cannot thank CPFF and their donors enough for this investment in my career and in the careers of so many others. Of course, the ultimate goal for us all is to provide outstanding and improving care for people living with PF.”