Learning to provide humanistic care and support in the context of chronic illness: Insights from the narratives of healthcare professionals in hemato-oncology.

PURPOSE: To document the process by which healthcare professionals (HCPs) support people living with and beyond hematological cancer and detail how they learned from their personal and clinical experience. METHOD: Using a narrative approach, we conducted nine semi-structured interviews with HCPs, including nurses, from a specialized care centre who support patients with hematological cancer. Interviews aimed to capture experiential learning gained from their practice. We performed a hybrid inductive/deductive content analysis on data using a framework based on sociological and educational models of experiential learning. RESULTS: Among healthcare professionals, analysis revealed the need to provide care and support that is 'humane' and adapted to each patient. Learning to provide this type of care proved to be challenging. Over the course of their clinical experience, healthcare professionals learned to adapt the support they provided by straddling a boundary between sympathy and empathy. Learning outcomes were associated with personal-professional development among participants. CONCLUSION: Our findings bring to light an overlooked facet of patient support in the context of cancer care, which is the acquisition of the soft skills required to deliver humanistic care and support. This learning process requires time and involves navigating between the realms of sympathy and empathy. Experiential learning is intertwined with the complexity of the often long-term patient-professional relationship that characterizes hemato-oncology. This unique relationship offers rewards for healthcare professionals on both personal and professional fronts.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

The Experiential Learning Pathway of Cancer Survivors as They Recover Their Lives Post-Treatment: A Qualitative Study.

For many cancer survivors, post-treatment challenges are predominantly related to their personal and social lives. These challenges are part of an experiential learning process linked to a survivor's identity, their desire to preserve independence, their social roles, and responsibilities along with a return to their normal lives. We used interpretive description to describe the experiential learning process of cancer survivors as they recover post-treatment. Data from five group discussions with 27 participants were combined with data from 9 in-depth individual interviews that examined post-treatment challenges. Through an iterative qualitative analysis, we uncovered 3 experiential learning pathways. Narrative vignettes are used to portray and highlight learning involved in accepting loss, asking for help, and rebuilding authentic social networks. Experiential learning shares recognizable features among individuals identified as milestones. These lead to a greater understanding of how cancer survivors acquire a new sense of self and recover their lives post-treatment.

COVID-19 Impact on Diagnosis and Staging of Colorectal Cancer: A Single Tertiary Canadian Oncology Center Experience.

BACKGROUND: Public health measures have imposed drastic reductions in cancer screening programs at the beginning of the COVID-19 pandemic, with an unknown impact on the diagnosis and staging of colorectal cancer (CRC). METHODS: Newly diagnosed CRC cases at the Centre Hospitalier de l'Université de Montréal (CHUM) were divided into two groups according to the timeline: pre-pandemic (1 January 2018-12 March 2020), and pandemic (13 March 2020-30 June 2021) periods. Colonoscopy, surgery, and staging at diagnosis during the pandemic period were compared to the pre-pandemic period. RESULTS: 254 CRC diagnoses were made during the pre-pandemic period in comparison to 125 during the pandemic period. Mean diagnosis rates were lower in the pandemic period (7.8 vs. 9.8 diagnoses/month, p = 0.048). Colonoscopy deadlines were less respected in the pandemic period (51.7% vs. 38.3%, p = 0.049). The rate of elective surgery did not differ (2.9 vs. 3.5 surgeries/month, p = 0.39) and mean delays were similar (58.6 vs. 60.4 days, p = 0.77). Stages at diagnosis did not differ (p = 0.17). Most of the delayed colonoscopies led to a stage 0 or I CRC (p = 0.2). CONCLUSION: In our center, the COVID-19 pandemic resulted in a decreased rate of CRC diagnosis and increased endoscopic delays without affecting the rate of advanced stage disease. Delays to surgery were quite similar once the CRC diagnosis was established.

Intrabone infusion for allogeneic umbilical cord blood transplantation in children.

Umbilical cord blood transplantation (UCBT) has been used to treat malignant and non-malignant diseases. UCBT offers the advantages of easy procurement and acceptable partial HLA mismatches, but also shows delayed hematopoietic and immunological recoveries. We postulated that an intrabone (IB) infusion of cord blood could provide a faster short- and long-term engraftment in a pediatric population with malignant and non-malignant hematologic diseases. We conducted this phase I-II single arm, exploratory clinical trial (NCT01711788) from 2012 to 2016 in a single center. Fifteen patients aged from 1.9 to 16.4 years received an IB UCBT. Median time to neutrophils and platelet recoveries were 18 days (range: 13-36 days) and 42 days (range: 26-107 days), respectively. Rate of severe acute GVH grade was low, with only one patient with grade III aGVH. Relapse occurred in 5 patients (38.5%) and TRM occurred in 1 patient. This leads to 6 years EFS and OS of 66.7% and 80% respectively. In conclusion, IB UCBT is safe and well-tolerated in children and hematological recovery compared similarly to the results obtained with IV UCBT.

Learning through the experience of cancer survivorship: differences across age groups.

OBJECTIVE: To identify and describe challenges that contribute to experiential learning among cancer survivors across different age groups. RESEARCH APPROACH: Qualitative collaborative study. PARTICIPANTS: 27 cancer survivors. METHODOLOGICAL APPROACH: Participants were invited to explain the after-cancer challenges they learned from during six focus groups. Five were organized by age-group (15-18, 19-34, 35-44, 45-59, ≥ 60) and a mixed group was held to ensure the co-construction of findings with participants. Inductive content analysis was performed. FINDINGS: While learning to live with a chronic disease, participant's experiential learning appeared through four challenges: Searching for one's identity, Autonomy, Disruption of social roles and responsibilities, Reclaiming one's life. Particular aspects of challenges were identified across ages-groups and life courses. INTERPRETATION: Results indicate that psychosocial and health professionals should be sensitive to the fact that life courses are now diverse and not always associated with biological age. This has the potential to improve care by informing how these challenges affect the experience of cancer survivorship over time.

From theory to practice: implementing a standardized, interactive education session on oral anticancer medication (OAM) for patients and their caregivers.

PURPOSE: Self-administration at home and decreased visits to see health care professionals bring patients on oral anticancer medication (OAM) and their caregivers to become experts in handling medication, managing adverse events, and making sure that they adhere to treatment. This project aimed to implement a standardized education group session for patients starting an OAM regimen and their caregivers that would build new knowledge, validate comprehension of information, increase satisfaction, and empower participants in self-management. MATERIALS AND METHODS: A group session led by an oncology nurse was developed. The theoretical section consisted of short videos that include both verbal and visual explanations. The practical component consisted of quizzes with electronic recordings and instant answers. Turning Point technology was used to compile and analyze the data. RESULTS: Over a 2-year period, 124 patients and 79 caregivers participated in the group sessions. More than 111 h were saved by giving standardized group sessions instead of individual teachings. The participants' level of confidence regarding the essential concepts to master significantly increased following the group sessions. The results ranged from 18% of participants who answered 4 or 5 on a five-point Likert-type scale before the session to 100% who answered 4 or 5 after the group session. 94% of participants responded with a rating of 4 or 5 when asked if they were satisfied with the overall interactive group session. CONCLUSION: It is crucial that caregivers participate in the initial OAM teaching. The involvement of the interdisciplinary team was crucial in meeting the informational needs of patients. A standardized group session accessible for viewing and use by all health care professionals and patients simplifies the process of sharing high-quality learning materials in a technological society.

Pharmacokinetics-adapted Busulfan-based myeloablative conditioning before unrelated umbilical cord blood transplantation for myeloid malignancies in children.

Unrelated umbilical cord blood transplantation (UCBT) is an alternative to provide transplants in children with acute leukemia or myelodysplastic syndrome who lack a related donor. Intravenous Busulfan (Bu) combined with therapeutic drug monitoring-guided dosing has been increasingly used, with more predictable bioavailability and better outcomes comparing to oral Bu. There is still an important variation in Bu pharmacokinetic between patients that is associated with an increased risk of toxicity and graft failure. The objective of the study was to analyze the impact of first-dose pharmacokinetic adapted myeloablative conditioning regimen of intravenous Bu on the different outcomes after transplantation. Data of 36 children who underwent allogeneic HSCT with Bu plus a second alkylating agent at Sainte Justine Hospital in Montreal, Canada, between December 2000 and April 2012 were analyzed. For children with high risk myeloid malignancies receiving an UCBT, first dose Bu pharmacokinetic seems to be a significant prognostic factor, influencing neutrophil (100% vs 67.9%) and platelet recovery (95.5% vs 70.5%), non-relapse mortality (0% vs 18.6%), EFS (64% vs 28.6%) and OS (81.3% vs 37.5%) for a first-dose steady-state concentration (Css) <600ng/mL vs >600ng/mL, respectively. These data reinforce the importance of Busulfan therapeutic drug monitoring-guided dosing in pediatric HSCT patients, particularly in the context of UCBT.

Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms.

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.

Systemic aspects of conjugal resilience in couples with a child facing cancer and marrow transplantation.

INTRODUCTION: The negative impact of paediatric cancer on parents is well known and is even greater when intensive treatments are used. This study aimed to describe how couples whose child has received a transplant for the treatment of leukaemia view conjugal resilience and to evaluate the role of we-ness as a precursor of conjugal adjustment. METHODS: Four parental couples were interviewed. Interviews were analysed in two ways: inductive thematic analysis and rating of verbal content with the We-ness Coding Scale. RESULTS: Participants report that conjugal resilience involves the identification of the couple as a team and cohesion in the couple. Being a team generates certain collaborative interactions that lead to conjugal resilience. A sense of we-ness in parents is associated with fluctuation in the frequency of themes. DISCUSSION: Participants' vision of conjugal resilience introduced novel themes. The sense of we-ness facilitates cohesion and the process of conjugal resilience.

Development of the Adolescent Cancer Suffering Scale.

BACKGROUND: While mortality due to pediatric cancer has decreased, suffering has increased due to complex and lengthy treatments. Cancer in adolescence has repercussions on personal and physical development. Although suffering can impede recovery, there is no validated scale in French or English to measure suffering in adolescents with cancer. OBJECTIVE: To develop an objective scale to measure suffering in adolescents with cancer. METHODS: A methodological design for instrument development was used. Following a MEDLINE search, semistructured interviews were conducted with adolescents 12 to 19 years of age who had undergone four to six weeks of cancer treatment, and with a multidisciplinary cohort of health care professionals. Adolescents with advanced terminal cancer or cognitive impairment were excluded. Enrollment proceeded from the hematology-oncology department/clinic in Montreal, Quebec, from December 2011 to March 2012. Content validity was assessed by five health care professionals and four adolescents with cancer. RESULTS: Interviews with 19 adolescents and 16 health care professionals identified six realms of suffering: physical, psychological, spiritual, social, cognitive and global. Through iterative feedback, the Adolescent Cancer Suffering Scale (ACSS) was developed, comprising 41 questions on a four-point Likert scale and one open-ended question. Content validity was 0.98, and inter-rater agreement among professionals was 88% for relevance and 86% for clarity. Adolescents considered the scale to be representative of their suffering. CONCLUSIONS: The ACSS is the first questionnaire to measure suffering in adolescents with cancer. In future research, the questionnaire should be validated extensively and interventions developed. Once validated, the ACSS will contribute to promote a holistic approach to health with appropriate intervention or referral.

Association between busulfan exposure and outcome in children receiving intravenous busulfan before hematopoietic stem cell transplantation.

BACKGROUND AND OBJECTIVE: Intravenous (IV) busulfan (Bu) combined with therapeutic drug monitoring-guided dosing is associated with better event-free survival (EFS), lower transplant-related mortality. But optimal target steady-state concentration (Css) of Bu in children undergoing hematopoietic stem cell transplantation (HSCT) remains unclear. This study aimed to evaluate the relation between Css of Bu and clinical outcomes in children receiving Bu before HSCT. METHODS: This study includes 75 children receiving IV Bu in 16 doses, with first dose assigned based on age. Bu first-dose pharmacokinetic parameters were estimated from Bu plasma concentrations measured at 6 time points by high-performance liquid chromatography. Doses were adjusted at the fifth dose to a target Css of 600-900 ng/mL. Cumulative incidence of overall survival (OS), EFS, transplant-related mortality, acute graft-versus host disease (aGVHD), and other toxicities in relation to Css of Bu were analyzed using Kaplan-Meier curves in univariate and Cox's proportional hazards model in multivariate analysis. RESULTS: After the first dose, median Css was 578 (325-1227) ng/mL. Forty-one patients had Bu IV dose increased by > 10%. Neutrophil and platelet recoveries, grade 2-4 aGVHD, and nonrelapse mortality (NRM) incidences were 90%, 91%, 12%, and 13%, respectively. Relapse incidence was 33%. Incidence of veno-occlusive disease, hemorrhagic cystitis, and lung toxicities were 13%, 24%, and 7%, respectively. OS and EFS were 70% and 58%. First-dose Bu Css >600 ng/mL was associated with a higher NRM (P < 0.001) and grade 2-4 aGVHD (P = 0.04), a lower EFS (P < 0.001), and OS (P = 0.001). CONCLUSIONS: This study demonstrated a significant association between the first-dose pharmacokinetics of Bu and NRM, OS, and EFS. Bu therapeutic drug monitoring provides information that potentially influences outcomes of HSCT in pediatric patients.

Risk of cytomegalovirus infection and disease after umbilical cord blood transplantation in children.

BACKGROUND: Pediatric data regarding cytomegalovirus (CMV) infections in pediatric patients receiving umbilical cord blood (UCB) transplantation are sparse. OBJECTIVE: To determine whether UCB transplantation increases the risk of CMV infection and disease compared with other graft sources. METHODS: The medical files of patients who underwent allogeneic hematopoietic stem cell transplantation at CHU Ste-Justine (Montreal, Quebec) from April 2000 to December 2006 were retrospectively reviewed. A Cox proportional hazard model was used to assess the effect of potential predictors of outcomes. RESULTS: A total of 176 patients with a median age of nine years (range 0.1 to 18 years) underwent hematopoietic stem cell transplantation. The source of stem cells were UCB, bone marrow and peripheral blood stem cells in 86, 86 and four of the cases, respectively. CMV infection occurred in 29 patients (16%). At day 100 post-transplantation, the rate of CMV infection was 13% in UCB transplant recipients (11 of 86) versus 20% in those with other sources of graft (18 of 90) (P=0.19). Positive CMV serology of the recipient and leukocyte depletion were two independent variables associated with an increased risk of CMV infection. Among infected patients, six developed CMV disease (20.7%). The rate of CMV disease one year after infection was 49% in patients who received UCB (five of 11) and 6% in others (one of 18). This difference was significant by univariate (P=0.01) but not by multivariate analysis. CONCLUSION: In the setting of the current study, with a moderate CMV infection rate (16.5%), UCB transplantation did not appear to increase the risk of CMV infection and disease.

HISTORIQUE: Il existe peu de données pédiatriques sur les infections à cytomégalovirus (CMV) chez les patients pédiatriques qui reçoivent une greffe de sang du cordon ombilical (SCO). OBJECTIF: Déterminer si la greffe de SCO accroît le risque d'infection à CMV par rapport à d'autres greffes. MÉTHODOLOGIE: Les chercheurs ont procédé à une analyse rétrospective des dossiers médicaux de patients qui ont subi une greffe de cellules souches hématopoïétiques au CHU Sainte-Justine de Montréal, au Québec, entre avril 2000 et décembre 2006. Ils ont utilisé un modèle de risque proportionnel de Cox pour évaluer l'effet des prédicteurs potentiels d'issues. RÉSULTATS: Au total, 176 patients ayant un âge médian de neuf ans (plage de 0,1 à 18 ans) ont subi une greffe de cellules souches hématopoïétiques. Les cellules souches provenaient du SCO, de la moelle épinière et du sang périphérique dans 86, 86 et quatre cas, respectivement. Une infection à CMV s'est manifestée chez 29 patients (16 %). Au 100e jour après la greffe, le taux d'infection à CMV s'élevait à 13 % chez les greffés de SCO (11 sur 86) par rapport à 20 % chez ceux dont la greffe provenait d'autres sources (18 sur 90) (P=0,19). La sérologie positive au CMV du receveur et la déplétion leucocytaire étaient deux variables indépendantes associées à un risque plus élevé d'infection à CMV. Chez les patients infectés, six ont contracté la maladie à CMV (20,7 %). Le taux de maladie à CMV un an après l'infection s'élevait à 49 % chez les patients qui avaient reçu du SCO (cinq sur 11) et 6 % chez les autres (un sur 18). Cette différence était significative selon l'analyse univariée (P=0,01), mais pas selon l'analyse multivariée. CONCLUSION: Dans le cadre de la présente étude, où le taux d'infection à CMV était modéré (16,5 %), la greffe de SCO ne semblait pas accroître le risque d'infection et de maladie à CMV.