Minimal change disease (MCD) is the most common pathological subtype of pediatric idiopathic nephrotic syndrome (INS). It has been suggested that IgM deposition might predict kidney function deterioration in the course of MCD. However, the specific role of IgM deposition in the prognosis of MCD is still controversial. This study aims to investigate the clinical significance of IgM deposition on delayed remission and early relapse in a pediatric population.This study enrolled 283 children diagnosed with MCD by renal biopsy in a single center from 2010 to 2022. These cases were divided into two groups according to the histopathological deposition of IgM. Patients' demographics, clinical parameters, and follow-up data were collected and analyzed. The primary and secondary outcomes were defined as the time to the first remission and the first relapse.P = 0.001), and showed more recurrent cases  compared with the IgM-negative group. The Kaplan-Meier analysis showed that the IgM-positive group had a lower cumulative rate of the first remission  and a higher rate of the first relapse  than the IgM-negative group. Multivariate Cox analysis showed that IgM deposition was independently associated with the delayed first remission  and the early first relapse .The IgM-positive group had a weaker response to steroids (steroid-sensitive: 23.5% vs. 40.8%; steroid-dependent: 74.0% vs. 51.0%; steroid-resistant: 18.4% vs. 8.2%, IgM deposition was associated with a weaker steroid response. MCD children with IgM deposition were prone to delayed first remission and early first relapse. Primary glomerular disease in children commonly presents as nephrotic syndrome (NS), characterized by massive proteinuria, hypoproteinemia, and peripheral edema. NS includes a variety of pathological subtypes, of which MCD accounts for about 70%–90% of children >1 year of age . HoweverThe role of IgM deposition in the progression and prognosis of MCD is controversial. A report in 2019 showed that IgM deposition was associated with hypertension, steroid dependence, and Chronic kidney disease (CKD) in children with MCD, which may be a predictor of deterioration of renal function . Sandra In this retrospective study, children (≤18 years) with MCD diagnosed by kidney biopsy from 2010 to 2022 were recruited from Jinling hospital. We enrolled cases who met the following criteria: (1) 24-h urine protein to creatinine ratio (UP/CR) ≥0.2 g/g; (2) patients with MCD whose biopsies were performed at any age between 1 and 18 years. Individuals with one of the following conditions were excluded: (1) infectious diseases ; (2) individuals of contemporary autoimmune disease, diabetes mellitus, malignant tumors; (3) drug-induced NS; (4) missing data on IgM deposition in renal pathology; (5) the glomerular number on light microscopy <10.All clinical and pathological data were obtained retrospectively from medical records. The baseline investigations were taken during the kidney biopsy. Follow-up data, including treatment, steroid response, time to the first remission and relapse, was collected and analyzed at 1, 2, 3, 6, 12 months and longer follow-up. The last follow-up time was estimated from the biopsy to the previous encounter in our center. The diagnosis of hypertension was based on the 2017 AAP Blood Pressure Clinical Practice Guidelines .2/day or 2 mg/kg/day) and no relapse during corticosteroid therapy. (4) Steroid-resistant was defined as a lack of CR for at least 4 weeks of full-dose oral prednisone. (5) Steroid-dependent was defined as follows: (1) Reach CR after the 4 weeks of full-dose oral corticosteroid; (2) Two consecutive relapses during corticosteroid therapy or within 15 days of discontinuing corticosteroid therapy; (3) Infectious factors should be excluded at the same time; (4) When relapse occurs, patients could reach CR once the corticosteroid dose is increased (either at full dose or beyond the relapse dose).(1) IgM-positive was defined as the intensity of the IgM staining by immunofluorescence ≥1+. (2) Grade of tubulointerstitial injury scored as none (<10%), mild (10%–24%), moderate (25%–49%), and severe (≥50%), with the percentages mentioned in parentheses. The change of chronic tubulointerstitial injury (CTI) indicated tubular atrophy/interstitial fibrosis. The manifestation of acute tubulointerstitial injury (ATI) was interstitial edema, inflammatory cellular infiltration, and necrosis in tubular epithelia. (3) Steroid-sensitive was defined as CR after the 4 weeks of full-dose oral corticosteroid  was a decrease in 24-h UP/Cr to <2 g/g but >0.2 g/g (or >20 and <200 mg/mmol) with a 50% reduction from its peak value, or the test result of the dipstick decreases by at least 1+, but it does not reach negative. CR was a decrease in 24-h UP/Cr ≤0.2 g/g (or 20 mg/mmol or negative or trace dipstick) on three or more consecutive occasions. Remission was the achievement of PR or CR. Relapse was defined as an increase in UP/Cr to ≥2.0 g/g in cases with a 50% increase from its valley value or in urine dipstick to ≥3+after the remission. Frequent relapse was defined as ≥2 relapses per 6 months or ≥4 relapses per 12 months.This cohort study's primary and secondary endpoints were the first remission and the first relapse, respectively. When patients achieved the first remission after biopsy, we considered this the first remission. And the time interval from treatment to the first day of remission would be recorded. Time to the first relapse was the time interval from the first remission to the occurrence of the first relapse.U test, represented by the median , while categorical variables using the chi-square test or Fisher exact test were expressed as frequency (percentage). All data were tested two-sided, with P < 0.05 regarded as statistically significant.The SPSS 26.0, Graph Pad Prism 8.0, and Adobe Illustrator 2020 were used for statistical analysis in this cohort study. The continuous variables were compared between groups using the Mann-Whitney P > 0.05). No severe ATI and moderate to severe CTI were observed in the renal pathology of all MCD individuals.As shown in P < 0.001). In immunofluorescence, 16 (11.8%) patients also had positive C3 deposition in the IgM-positive group, while only 7 (4.8%) were in the IgM-negative group (P = 0.048). The IgM-positive group had a lower level of serum albumin  and a higher level of eGFR  than the IgM-negative group.The median age at the renal biopsies of patients was 12.6 years old for the IgM-positive group and 15.2 years for the IgM-negative group (P = 0.025) than the IgM-negative group. More details of immunosuppressive therapy for the steroid-sensitive nephrotic syndrome (SSNS), steroid-dependent nephrotic syndrome (SDNS) and steroid-resistant nephrotic syndrome (SRNS) patients are shown in A summary of treatment and outcomes is shown in P = 0.001). For instance, the IgM-positive group has fewer steroid-sensitive patients (23.5% vs. 40.8%), more steroid-dependent (74% vs. 51%) and steroid-resistant patients (18.4% vs. 8.2%) than the IgM-negative group. 283 (100%) patients reached the first remission during a median follow-up time of 30 days. The median time to the first remission was significantly different between the two groups . 171 (60.8%) patients relapsed at least once during a median follow-up time of 200 days. Although the frequencies of frequent relapses (20.6% vs. 19.7%) and infrequent relapses (44.9% vs. 36.1%) were more common in the IgM-positive group than in the IgM-negative group, there was no statistically significant difference in relapse between the two groups (P = 0.182).The IgM-positive group was less responsive to steroid therapy than the IgM-negative group  (P < 0.001), serum albumin , steroid-resistant  were associated with the first remission. The result of the multivariate Cox regression analysis is listed in P = 0.001), serum albumin , steroid-dependent  and steroid-resistant  were independently association with the first remission.The Kaplan-Meier survival analysis showed that the IgM-positive group had a lower cumulative rate of the first remission than the IgM-negative group  . The 1-,P > 0.05) (P = 0.090) and multivariate analysis  showed that IgM deposition was not associated with the first relapse. Serum albumin  and steroid-dependent  were independently associated with the first relapse in the univariate Cox analysis. In the multivariate Cox analysis, serum albumin  and steroid-dependent  were still independently associated with the first relapse.However, there is no statistical difference in relapses between the positive and negative groups  . MoreoveP = 0.047). P = 0.034). The 3-month, 6-month, 1-year and 2-year remission rates were 12.98% and 18.87%, 21.37% and 30.19%, 34.35% and 41.17%, 34.35% and 47.17% for the IgM-negative group and the IgM-positive group, respectively. The univariate Cox regression analysis showed IgM deposition  and serum albumin  were associated with the first relapse. P = 0.045) and serum albumin  are independently associated with the first relapse.We suggested that a significant portion of patients relapsed after a follow-up of 1 year. Therefore, extended follow-up may be necessary to demonstrate the significance of IgM deposition in relapse. Finally, 237 patients with a follow-up of more than 1 year were included to detect the predictors of the first relapse. The results are shown in Several studies have examined the clinical characteristics and renal outcomes in pediatric MCD with or without IgM deposition , 9, 10. In previous studies, MCD children with IgM deposition showed a more common frequency of steroid dependence , 11. A sIn our study, the time to the first remission was significantly longer in the IgM-positive group than in the IgM-negative group. And the IgM deposition was an independent risk factor for delayed remission. Nevertheless, Mateja et al. found no differences in the time to the first remission and frequency of the first remission between MCD children with and without IgM deposition . An adulA study published in 2021 indicated that IgM mesangial deposition was a risk factor for relapses of adult-onset MCD . In our IgM deposition can be observed in some MCD and focal segmental glomerulosclerosis (FSGS) patients' renal biopsy samples under immunofluorescence , 17. MCDde novo antigens exposed to the glomerulus, activate the complement system, and further contribute to renal injury (IgM is the largest serum antibody in the human body and the initial activator for the complement cascade . Some scl injury , 23. WheThere were some limitations to our study. First, our study still had the inevitable drawbacks of a retrospective cohort design, indicating that the patients needed to accept uniform treatment. And we did not adjust the immunosuppressive therapy in the Cox regression model. However, it should be noted that there was no difference between patients with and without IgM deposition using ACEI/ARB or steroid or immunosuppressive agents, as shown in MCD children with IgM deposition are more likely to present with steroid dependence or steroid resistance, suggesting a possible association with a poorer disease state. IgM deposition is an independent risk factor for delayed remission and an independent promoting factor for early relapse of pediatric MCD. Therefore, enhanced disease activity surveillance should be considered in MCD pediatric patients with IgM deposition. Nonetheless, a prospective study is needed to verify the function of IgM deposition in MCD outcomes.


The Latinx community is at risk for obesity, type 2 diabetes, and other chronic illnesses. Culturally appropriate, community facing physical activity (P.A.) and nutrition programs may provide the basis for families to improve their health status. Our objectives are as follows: 1. To investigate synergistic factors within this type of program that play a role in creating an environment for participants to learn and practice healthy behaviors. 2. To apply factors into a novel model of components that support health and wellness. 3. To design an intervention for future implementation and evaluation.Families Inspired Together 4 Youth Empowered to Succeed (FIT 4 YES), took place in Milwaukee, WI. with Hispanic families from 2018 to 2020 through a community-academic partnership. A pair of interviewers spoke with families who provided insight into the impact of the program. A grounded theory qualitative approach to code the transcripts guided the team to identify overarching themes.A two-year P.A. and nutrition program, Twenty-four interviews were conducted. Common themes indicated that children had a stronger belief in their abilities and confidence in peer support. Parents noticed their children increasing self-directed healthy behaviors. All families grew in their implementation of health and wellness.Three main components of FIT 4 YES contributed to its success: opportunities for engagement, supportive relationships, and the interplay of components that emerged from the interviews. Effective programs could include these components to make their outcomes more cohesive within the family. A novel model emerged that builds on the social-ecological model that emphasizes the dynamic interactions between these main components. Additional research is needed to evaluate the long-term effects and response by the community.The online version contains supplementary material available at 10.1186/s12889-023-15005-2. According to the Centers for Disease Control and Prevention 2020), only 24% of children aged 6 to 17 are physically active 60 min per day. The prevalence of obesity among U.S. youth currently resides at 17.8% and severe obesity at 5.8%. Hispanic youth experience the highest obesity rates of 23.6% as compared to non-Hispanic white youth at 14.7%  a safe space for more people. Like there’s not much fighting or like bullying there. It’s just where we can all have fun and get together and learn."The feeling of security in an environment and belief that one is protected from judgment by the people around them defines the category of safety. In many of the interviews, student participants described the supportive environment created by both the program and the other students. Parents commented on the comfort they had knowing their child could go to trusted adults if there was ever a problem.Never in time has there been a more significant movement of people from one country to another. Across the U.S. and world, there is a need for programming that supports the health and well-being of people that move from one part of the world to settle in another. Programs developed by academic institutions may either gloss over or omit cultural components, missing an opportunity not only to connect with families but also to deepen the connection between culture and health . DevelopThe use of the SEM is not new within the literature , 7. HoweThe seven defined aspects for success of the FIT 4 YES program can be more broadly categorized into three “ingredients” to make a community-facing nutrition and physical activity program successful:Strength of relationship is a key component of the model and observed in all aspects of the program. These essential relationships included those between participants and program leaders, peers, and family members. This program created a space for both children and families to deepen multiple relationships. Because the program leaders had been previously involved with the community, they built deeper connections with the children and encouraged their families to engage with different aspects of the program using their preferred communication styles. This level of trust allowed for the relationships to extend beyond the confines of the program, as participants brought home knowledge and skills and continued to develop and share this excitement with those around them.Son: “I feel like [FIT 4 YES is] a safe space for more people. Like there’s not much fighting or like bullying there. It’s just where we can all have fun and get together and learn.”Mother: “This program is safe and if they ever need to talk to one of the adults, they have that opportunity to talk to them and for them to feel safe.”Son: “It felt good. I could tell that I wasn’t alone and that I had people with me to go.”Mother: “I think it’s awesome that other students in the program are there for each other and are helping one another out and I think that’s what it should be about.”Not only were these connections brought home, but the participants created their own environment of safety and peer support. Adolescence is a challenging time for youth as individuals seek to fit in and tend to be body conscious. Children at this stage of development are often both the subject and object of bullying, teasing, and making fun of one another. Yet, in this environment, there was little of that happening. During one of the observation sessions, a group playing frisbee displayed this dynamic. When a young man missed a catch and was struck on the cheek with the frisbee, several of the other children gathered around him to offer support and encouragement instead of teasing him. Once he composed himself, he was brought back into the game with open arms. Examples like these were witnessed regularly during physical activity and the nutrition sessions focused on cooking. One family commented extensively on the “safe space” that FIT 4 YES provided:The compact nature of urban environments can be a challenge for healthy eating and active living. The UCC is situated on the near south side of Milwaukee, the densest living conditions in Milwaukee. Constant traffic and safety concerns make for a challenging environment for play. In addition, the one large chain grocery store available to residents has since moved, leaving only bodega-style convenience stores and the largest grocery store nearly two miles away. FIT 4 YES, situated within the school and adjacent to the UCC, used the school’s resources and a neighboring park and was a safe place for children and families to get involved in healthy eating and fitness activities.FIT 4 YES employed hands-on engagement strategies for both the nutrition and physical activity components of the program. The emphasis on fun allowed students the space to try new foods and practice components of the lesson with less pressure, and to work towards bringing home knowledge and skills for future use. One example of skill development and fun engagement was working on knife skills – learning to use sharp kitchen knives to cut vegetables. Each participant took the instruction seriously, only picking up their knives during a knife demonstration when the instructor told them to do so. Even parents noticed the skills that the children developed. Some commented that there was a seeming maturity in the children following the program. Others commented that their children could now make a meal using knives, stoves, and other utensils and not “burn down the house” said with a smile.“I think, you know, Hispanics…it’s hard for us to do change I think overall in any person. Change is hard but I am thankful for all the events, for all the classes, for everything the forum has offered. I feel that the classes, the retreat, any event that they have involved with the family and the kids have made me feel closer to my child and I have learned a lot from him and from the school and from the program, and I am forever going to be thankful for everything. So, I do appreciate all the help you guys offer.”Interviews frequently commented on how the FIT 4 YES program engaged the family as well as the students. This led to strengthened family relationships and changed family routines. Parents were grateful for their opportunity to learn with and spend more time with their children through their inclusion in programming, and often remarked on the programs ability to give their children experiences they felt unable to provide themselves, such as skiing, by providing transportation and free use of shared equipment. Students brought home lessons and skills they learned from the program to share with their parents and siblings and became more aware of the food they were eating at home. While grocery shopping with mom or dad, they initiated looking at food labels and encouraged their parents to purchase healthier options. FIT 4 YES allowed families to connect more outside of the program as children wanted to discuss what they were learning with their parents and practice their new skills with them. Routines and habits also changed as families spent quality time by playing outside, walking, or cooking together, rather than sitting and watching TV.The themes that emerged from the family interviews  led to the creation of our novel model that we believe allowed for program success. Current iterations of the SEM demonstrate the effects of multi-level interventions on the individual; however, the static nature of these models fail to represent the synergy and movement many of these effects have with each other. Our model integrates the levels of the SEM with aspects of the FIT 4 YES program that were necessary to empower participants to engage with healthy behaviors. Each of the factors included are linked in such a way to create a funnel effect down to the individual level allowing for individuals to try new things.“I think it has helped him just like how to interact with other people, like with the cooking and with the sports like sharing, helping each other, encouraging each other…giving positive comments to each other…I like the community that they’ve built together”Beyond the interplay of the components is the movement that occurs between the components. Where there was once a model that showed a downward flow of components, the final version showed a swirling series of arrows that moved through and down the model. This model illustrates that none of these themes can stand alone in a program. Each aspect contributes to the strength in relationships, engagement, and interplay, allowing for the creation of a community-focused health promotion program, and allows the flexibility to emphasize the themes that may work best for the specific community.The three larger “ingredients”  are aspects of community-centered health promotion programs that each have vital aspects when standing alone. When present and in play with each other, these components allow for the greatest impact within the family. We saw the creation of a community outside the program space that further integrated the knowledge, skills, and support beyond the individual level.We discovered that the student participants in FIT 4 YES acted as catalysts for change for their families, leading to the potential for change within the larger community. Parents reported an increase in their children’s self-directed healthy behavior, encouraging examination of nutrition labels in the grocery stores, and helping with dinner preparation using knowledge and skills gained in the program. Students would inspire their siblings and friends to spend more time outside, increasing their physical activity through games and additional resources. By children encouraging their parents to attend the program, they not only helped strengthen the cohesion within their own families, but also between families and the community, creating a network with emphasis on supporting and learning with each other, rather than trying to change alone.Commitment to strengthening family cohesion through a health-promotion program provides an opportunity to move from the individual to community level. Instead of focusing on the individual take-aways, programs can take it a step further to look at how family relationships are impacted, and how that may be leveraged for a larger community impact.Qualitative research are not generalizable to another group, though it is believed that the number and depth of the interviews provides points that could be relevant to other groups. In addition, no outcome measures were completed. For this project, the emphasis was on the experience of the participants and their families, and the development of the model.Something is missing from the current version of the SEM and does not quite express the level of synergy when creating a community-focused health promotion program. We created a novel model displaying this dynamic relationship based on family interviews that we believe can be utilized to support strong family cohesion and ultimately have a larger community impact. In the development of future programs, this model can be used to highlight the vital aspects necessary to create an environment promoting healthy changes on a community level.The team views the model as a beginning point rather than an end. The limited number of models for wellness and nutrition means that with the development of this model, the next step will be to test the model to determine what components will stay and what may shift. Additional evaluation could also focus on the impact and reaction of the model by conducting additional interviews. In future interventions, the implementation of a toolkit could emphasize connections with the community by trained parent navigators. Finally, like many programs focused on wellness, there is a lack of long-term information on aspects of the project that stick with individuals and families over the long term. For now, this model demonstrates what might be possible when a robust program is developed with the community in mind.Additional file 1. Interview question guide. All questions were approved by a native Spanish speaker for cultural sensitivity.Additional file 2. COREQ checklist. In accordance with BMC Series editorial policies, our manuscript reporting adheres to COREQ guidelines. Additional file 3. Participants’ Responses to Program. This table illustrates specific quotes from the participant interviews that best demonstrate each respective theme that emerged from the qualitative analysis.Additional file 4. Prior Model Iterations. This figure demonstrates the evolution of our model and the shifts in the development from a simple flowchart to Venn-diagrams, to panels that illustrate the movement observed between and within each level.


Several ADHD teenagers had difficult behavioral problems during countries closing down due to Covid-19 pandemic. One of these negative outcomes that parents cannot control children’s behavior toward desired unhealthy food and the impulsive consequences. It was a great opportunity to convention a teletherapy program as a tool of intervention seeking for help to reduce uncontrolled self- management and nutrition, which may affect all sorts of childhood growth, development, health and behavior. Furthermore, it can affects daily life and academic success.We tried through our study to enhance the teletherapy as a therapeutic tool, during the first and second phase of Covid-19 pandemic, trying to help parents and patient to overcome the impulsive behavior by using a specific therapy technique based on nutrition and behavioral therapyOur case study is a young girl aged 12:4 Yrs. In middle bilingual Arabic/ American School. The therapeutic program designed via teletherapy program using multi-media and thru multi phases sessions, to increase focus attention, emotional control and reduce impulsivity.The outcomes of the enhancing nutrition and behavior teletherapy program, showed significant improvement for the specific goal. Sensible change in the girl’s impulsive behavior, more focusing, emotional control and more accepting about health nutrition habits.The important finding that intensive, focused nutation and self-management techniques provided via teletherapy as solitary program brought benefits to individual’s, family and reduced impulsivity outcomes. In addition, family education to become an expert at learning simple techniques in daily life can brining a sense of pleasure for long life wellbeing.No significant relationships.


Positive detection of those aneuploid non-hematological circulating rare cells was five months prior to subsequent plasma CA19-9 increasing and ten months before the de novo pancreatic cancer was diagnosed by medical imaging modalities. Besides previously reported clinical utilities of co-detection of aneuploid CD31- CTCs and CD31+ CTECs in real-time evaluation of therapeutic efficacy, longitudinal monitoring of emerging treatment resistance and adequate detection of MRD, a large cohort study is necessary to further investigate whether, and how, a high ratio of MRD CTECs to CTCs may function as an appropriate index forecasting either occurrence or metastatic distant recurrence of malignancy in post-therapeutic cancer patients.Effectively evaluating therapeutic efficacy, detecting minimal residual disease (MRD) after therapy completion, and predicting early occurrence of malignancy in cancer patients remain as unmet imperative clinical demands. This article presents a case of a laryngeal carcinoma patient who had a surgical resection and complete post-operative chemoradiotherapy in combination with the targeted therapy, then rapidly developed pancreatic adenocarcinoma. Detected by SE-iFISH, the patient had a substantial amount of 107 non-hematological aneuploid circulating rare cells including 14 circulating tumor cells (CTCs, CD31 Effectively evaluating therapeutic efficacy and predicting cancer patients possessing a high risk of malignancy remain highly challenging. Current clinical strategies to detect cancer occurrence mainly rely on medical imaging modalities, including computed tomography (CT) to show the location, anatomic shape, and size of a lesion; magnetic resonance imaging (MRI) that uses strong magnets to create cross-section images inside the body; and positron emission tomography (PET) to identify an increased glucose consumption spot of neoplasm. However, the hurdle of conventional clinical imaging is its limitation to detect only visible-sized tumors. Medical imaging detection of invisible minimal residual disease (MRD), which are a small number of cancer cells remaining in the body after treatment , has notThe association of quantified circulating tumor cells (CTCs) with cancer occurrence has been reported elsewhere –5. Recen+ aneuploid circulating TECs, known as CTECs  has recently been reported to effectively co-detect and molecularly characterize aneuploid CTCs and CTECs (in situ phenotypic and karyotypic molecular characterization as well as categorization of enriched circulating rare cells (A novel strategy integrating subtraction enrichment (SE) and immunostaining-fluorescence nd CTECs , 13, 21.re cells .- CTCs and CD31+ CTECs for adequate evaluation of treatment outcome, detection of MRD, as well as prediction of early occurrence of new primary lesion in post-therapeutic cancer patients.In this report, we present a case showing that a post-surgical laryngocarcinoma patient, after receiving a complete chemoradiotherapy, still showed a large quantity of CTCs and CTECs with a substantially high ratio of CTECs/CTCs > 5. Positive detection of CTCs and CTECs occurred ten months prior to the diagnosed pancreatic cancer. This case highlights potential unique clinical utilities of the co-detection of aneuploid CD31As depicted in - CTCs and CD31+ CTECs was performed according to the protocol . A majority of CTCs were multiploid in chr8 . Out of 93 CD31+ CTECs, most were large cells (89/93 = 95.7%). The predominant karyotype of CTECs was multiploidy. Large multiploid cells constitute the main population of detected CTECs . Representative images of CTCs and CTECs detected in this patient are demonstrated in Instead of longitudinal detection along with therapy process , 17, 22,protocol  at the ede novo pancreatic adenocarcinoma in July 2019 (t5). As illustrated in In February 2019 (t4), as depicted in The patient was subjected to four cycles of FOLFIRINOX chemotherapy in July, followed by palliative resection of the pancreatic lesion in September 2019 (t6) . The subject afterwards received seven cycles of FOLFIRINOX adjuvant chemotherapy. A follow-up examination of abdominal CT and MRI scan in March 2020 (t7) showed no additional tumor metastasis. The hepatic metastasis was diagnosed in July 2020 (t8). Following three cycles of Gem plus Taxotere (GT) chemotherapy, tumor progression was observed by abdominal MRI scan in August 2020 (t9). The patient was subjected to four cycles of FOLFIRINOX chemotherapy and subsequent combination therapy, whereas no progress was made on progression of the pancreatic cancer. The patient died in March 2021 (t10).Liquid biopsy detection of circulating tumor biomarkers, including circulating tumor DNA (ctDNA) and CTCs, has served as a non-invasive approach applied in diagnosis and treatment of cancers, as well as detection of therapy-resistant MRD . ctDNA iAneuploidy is the hallmark of malignant neoplastic cells , 10, 27.- aneuploid circulating rare cells including 14 CTCs and 93 CTECs. Among those cells, 28.6% CTCs were in small cell size and 86% of CTECs as well as 57.1% CTCs had a high degree of chr8 aneuploidy (≥pentasomy 8). Comparing to an average of less than 2.8 ± 3.6 CTECs (Mean ± SD) per 6.5 ml blood in healthy donors  of the Fifth Affiliated Hospital of Sun Yat-Sen University, Zhuhai, Guangdong, China, was signed and obtained from the patient.JM, FY, JL, and QZ participated in patient treatment and analysis of results. ML contributed writing original draft. AL contributed methodology and writing original draft. AL and DW contributed methodology and validation. QZ and PL contributed conceptualization, writing – original draft, review, and editing. All authors contributed to the article and approved the submitted version.This study was supported by the Science and Technology Planning Project for Health Care of Zhuhai City  Grant ZH22036201210051PWC to QZ.Authors thank staffs at the Fifth Affiliated Hospital of Sun Yat-Sen University, Cytointelligen  and Cytelligen  for providing support to this study.® is the registered trademarks of Cytelligen. PL is the president at Cytelligen. None of authors owns Cytelligen’s stock shares.i•FISHThe remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Public libraries are asset institutions that provide important spaces for families to engage in meaningful, authentic STEM learning. However, limited budgets and a model centered on open-access and broad inclusion makes conducting rigorous evaluations in these spaces, such as randomized control trials, challenging. There is a need to consider evaluation designs that consider both rigor and feasibility. The aims of the present study were to: (1) describe an innovative interactive parent–child interactive storytime program, Fun with Math and Science (FMS); and (2) conduct a preliminary evaluation of FMS in a large, urban public library setting, using a quasi-experimental static group comparison design.Post-test scores for caregivers who completed the program in the fall or winter (n = 80) were compared to pre-test scores for caregivers who completed the program the following spring (n = 35); Fall/winter caregivers scored higher on program items related to concrete behaviors to support math and science learning, but significant differences were not found on items related to caregiving beliefs or general caregiving practices. Demographic differences were also found related to program outcomes.Results are discussed both in terms of implications for the development and implementation of caregiver-child interactive programming, as well as the use of innovative analytic approaches to program evaluation in community settings. Children’s school readiness skills at formal school entry have been shown to predict children’s academic trajectories, with math holding the greatest predictive power of later achievement . UnfortuCaregivers’ expectations for their children predict children’s later attitudes about and achievement in math and science domains . For exaIn addition to caregivers’ perceptions of what young children should know related to math and science, how caregivers and children spend time together also matters. For example, when caregivers provide math and science activities at home, children’s early skills in these areas improve . The worWith the growing awareness of the value of caregivers in supporting math and science learning among young children for later school success, a burgeoning set of intervention programs for caregivers of young children have emerged, providing preliminary evidence that intervention efforts in both the home and at school can significantly improve caregiving practices and, ultimately, promote children’s emerging math skills . For exaIn contrast to early math, there is a dearth of research on efforts to promote parent–child learning related to early science skills see . An excefor people to what they can do with people, resulting in greater attention to the experiences within the library, including early learning programs , a joint venture undertaken by the Association for Library Services to Children and the Public Library Association. During program sessions, caregivers are led through activities with their children that promote early literacy skills and are taught how to apply and expand on these learning strategies in their day-to-day interactions with children at home. Evaluation results of the ECRR program indicate that the enhanced storytime format does in fact promote family engagement (© (Blinded for review), also demonstrated promise for enhancing parents’ knowledge, attitudes, and behaviors (Blinded for review). These evaluations provide initial evidence that enhanced storytime programs can promote caregiving practices that encourage early learning.In addition, gagement , with pagagement . Furthergagement . A recenInteractive caregiving programs also have the potential to enhance positive practices more broadly. As caregivers practice strategies to support their child’s early learning, they also likely increase their beliefs, practices, and perceptions of self-efficacy regarding engaging in positive caregiving practices ; in fact©  is a 6-week enhanced storytime program for caregivers and their preschoolers delivered by trained library staff. Guided by the National Association for the Education of Young Children’s Developmentally Appropriate Practices, it takes a progressive approach to education focusing on multicultural education, constructivism, and child-centered curriculum  instructors model the quality adult-child interactions during the course; and (c) time and space is provided for caregivers to immediately practice these new skills with their child during activities. After each session, children are given a book and caregivers are given a tip sheet to take home.Fun with Math & Sciencerriculum . Throughrriculum . Through© a priority. Pretest-posttest designs are commonly used in community-based research to assess change resulting from participating in a program or other intervention effort, despite their vulnerability to threats of internal  and external  validity. Rather, this design is used because it is relatively more feasible and requires fewer resources and demands than more rigorous designs that employ a control group. For example, a randomized control trial (RCT) design, often regarded as the gold standard, can best isolate program effects and protect against threats to validity, especially internal validity. However, for many community-based institutions, such as public libraries, limited and fluctuating yearly budgets prohibit rigorous evaluation, including other quasi-experimental designs that use a recruited comparison group . In addition, because libraries are inclusive community hubs that provide access to programming for all users, limiting service delivery to some families and not others can be unethical.Funding for community-based programs continues to prioritize “evidence-based” programming, making evaluations of programs such as FMSpost-survey of caregivers who participated in the program during an earlier time point  to the pre-survey of caregivers participating in the program at a later time point (spring). Using this design allows for the latter group to serve as a non-random control group for examining the relationship between program participation and measurable outcomes , when controlling for family demographic characteristics?Results of this study have implications for informal learning and community-based efforts to promote school readiness skills for children and supporting caregivers as a child’s first teacher. This study also provides a framework for other researchers who, because of practical real-world constraints, are unable to employ resource-heavy experimental design strategies to evaluate a community-based program or service.© program, 80 in the Fall/Winter season and 35 in the Spring season. Demographic characteristics for participating families can be found in A total of 115 families participated in the Fun with Math & Sciencevia email to caregivers who had not yet completed the survey after the first session. Caregivers who joined the program in Week 2 were able to complete a pre-survey at that session, but no one was asked to complete a pre-survey after Week 2 of the program. In the final week of the program, researchers distributed paper post-surveys in-person to all in attendance. Caregivers who did not complete a pre-survey were also asked to complete demographic items at the post-survey. Caregivers who were unable to complete the post-survey in person were sent an email request with a link to the online version of the survey.After participants registered for the public library program, they were invited to participate in the evaluation study by trained research staff. Using the email addresses from the registration list, caregivers were sent an email with an explanation of the evaluation and a link to the consent form and pre-survey, including demographic questions. Caregivers who had not completed the online pre-survey prior to the start of the program were invited to participate in-person before or immediately after the first session. Reminders were sent Strongly disagree) to 5(Strongly agree). Each item was examined as an independent outcome. At pre-and post-test, caregivers completed a 16-item investigator-developed Math & Science Questionnaire: MSQ , that captured beliefs  and behaviors  for supporting young children’s math and science learning. Caregivers reported on each item on a 5-point scale from 1 , Harsh  and Permissive .Caregivers reported on their parenting behavior using the Raising Children Checklist RCC; . The RCCαpre = 0.76, αpost = 0.79) measured on a 5-point scale ranging from 1 (Almost never or never) to 5.Caregivers reported on their self-efficacy using the Parental Self-Agency Measure . The scaαpre = 0.64, αpost = 0.73) measured on a 5-point scale ranging from 1 (Strongly disagree) to 5 (Strongly agree).Caregivers reported on the extent to which they endorsed progressive parenting beliefs using the Progressive subscale of the Parental Modernity Scale . The scaCaregivers reported on their child’s age and sex  Caregivers also reported on their educational level  and their race/ethnicity. Due to small numbers of racial/ethnic sub-groups, we examined differences between White (coded as 0) and Non-White (coded as 1) participants.A static-group comparison design was employed. We compared whether the post-test scores for caregivers who completed the FMS program in the fall/winter (coded as 0) differed from the pre-test scores for caregivers who completed the FMS program in the spring (coded as 1). We controlled for child and family characteristics, including child age, sex, caregiver level of education, and child minority status. Analyses were conducted using Stata using full information maximum likelihood to handle missing data, which minimizes bias in parameter estimates while retaining the original sample size . There wB = 0.65, SE = 0.14, β = 0.36, p < 0.001), were 0.11-SD more likely to ask “why” questions , and were 0.26-SD less likely to utilize parent-as opposed to child-directed play , as compared to the spring caregivers at pre-test. Significant differences did not emerge on program-specific items related to caregivers’ beliefs regarding children’s math and science learning. In addition, no significant differences were found regarding caregiving more generally . Covariates also indicated significant differences in program outcomes, including general caregiving beliefs and styles, and attitudes, knowledge, and behavior regarding math and science  heighten the rigor of the study compared to a traditional single group pre-post design, and present a model for other community programs with similar “real world” data collection constraints.The results of the current study are promising for the FMS program to increase caregivers’ ability to support their child’s early math and science learning. In particular, the program outcomes for which fall/winter families demonstrated improvement at post-test compared to the spring families at pre-test were primarily those that centered on program specific behaviors that can be enacted in the home to support early math and science learning. In contrast, program specific outcomes that captured beliefs regarding math and science learning in early childhood did not demonstrate significant differences between the groups. Specifically, caregivers asked more “why” questions to encourage their child to explain their thinking and to take their child’s lead during activities. By enacting these behaviors, caregivers likely felt more prepared to support their child’s math and science education. Another parent education program, although conducted within the elementary school setting, also found that participating parents demonstrated both increases in the educational activities they engaged in with their children at home, as well as in their role as crucial supporters of their child’s learning .The fact that significant differences were found regarding program specific behaviors and skills, but not beliefs, regarding science and math learning in early childhood , is consistent with the nature of FMS programming. Through book reading, songs, and interactive activities focused on specific math and science topics , the program focuses on modeling and practicing concrete behaviors to improve early STEM skills and positive caregiver-child interactions. The FMS program also encourages caregivers to act as co-learners, rather than leaders in their children’s play. It is likely that caregivers, especially those who chose to attend FMS, already come into the program with strong beliefs regarding the importance of early math and science skills, but do not feel like they have concrete strategies to support this learning. This is consistent with previous research that has shown consistently high positive beliefs regarding the importance of mathematics for young children and the capacity for young children to learn math, but more variability in parents’ reported math practices in the home . In addiIt is important to note that we did not see changes in general caregiving practices or beliefs, including parenting style, progressive parenting, or parental self-agency. We expected that as caregivers learned more about child development and engaged in child-directed activities to support their child’s learning, they would be more likely to believe in the importance of supporting their children’s interests, providing choices, and explaining decisions and rules, as reflected in progressive beliefs and a firm parenting style, in addition to feeling more self-efficacious overall. However, these results indicate that the program may not include enough explicit content to support generalization beyond the specific math and science topics that were emphasized throughout the course. It is also likely that it takes time for caregivers to internalize these ideas and see changes in their children’s learning and development. It is certainly possible that if caregivers continued to engage in these behaviors at home beyond the six-week intervention, that they may see the connections between their caregiving more generally and child outcomes. Future program developers or implementers may need to be more intentional in discussing how practices related to supporting math and science learning can be integrated into other domains of caregiving. Changing fundamental practices and perspectives regarding caregiving more generally may require a more intensive and sustained intervention. Finally, as discussed further below, these practices and attitudes may not hold the same relevance across demographic, especially racial/ethnic, groups; careful consideration should be given to choosing program outcomes that are both aligned with the program content and goals, as well as the families whom the program is targeting.It is important to note that considerable demographic differences emerged related to our program outcomes, as indicated through the inclusion of our covariates. Unfortunately, we did not have adequate power to examine whether the library program had differential effectiveness according to such characteristics. However, examining mean-level differences in our outcomes can provide insight regarding how community-based programs, especially those focused on math and science, may best be able to uniquely support particular groups of children and families. This is especially important, as the majority of librarians are White females from middle-class backgrounds , but theIn general, caregivers of boys, caregivers with older children, and caregivers who did not identify as White found it more difficult to find opportunities at home to help children develop scientific and mathematical skills. Additionally, caregivers with lower education levels, caregivers who do not identify as White, and caregivers of older children were more likely to endorse the importance of outcome-based, as compared to effort-based, praise. Racial/ethnic and gender differences also emerged regarding the extent to which caregivers engaged in child-directed play and asked open-ended questions. Each of these caregiving behaviors were taught through FMS tips and activities, so it is crucial to ensure that program content and materials are able to reach families from diverse backgrounds. For example, providing options for downward and upward extensions of program activities can allow families to adapt such activities to be most developmentally appropriate for their child . In addiIn addition to program-specific outcomes, demographic differences also emerged according to parenting styles and beliefs , with caregivers with higher education levels and younger children more likely to engage in firm parenting, and caregivers who do not identify as White and parents of older children more likely to engage in harsh and lax parenting. Caregivers of girls and caregivers who identified as White were also more likely to endorse progressive parenting. Previous research has also found similar differences in parenting style according to demographic characteristics . HistoriThis evaluation of the FMS program imparts two important lessons for practitioners and researchers working in community settings. Specifically, it provides guidance on the development and implementation of parent–child interactive programming, as well as a novel approach to program evaluation, moving beyond the traditional pre/post design.First, our results emphasize the promise for parent education programs that involve the child in interactive activities for enhancing caregiving skills. By providing caregivers with opportunities within the sessions to practice the skills they were learning, we saw significant changes between our treatment and comparison groups on items that directly addressed practices related to children’s math and science learning. Considering the age of the participating children , it was important to develop and successfully implement a program that both taught concrete caregiving information and skills, but was also engaging for young children. The interactive storytime format provided opportunities for didactic teaching of program content, book reading, and movement through song and dance, while still having a large block of time for unstructured play and activities to explore the focal math and science concept of the week. In addition, the group-based nature of the program allowed families and children to learn from one another, engage in parallel play, and build relationships over the course of the program. Future program developers should consider a variety of ways to structure programs that facilitate both caregiver and child engagement, as well as skill development.Second, in our partnership with the public library that developed and implemented the FMS curriculum, the need to consider feasible evaluation strategies was apparent. Although RCTs are a gold standard approach for program evaluation, they are not always practical or possible in many community-based situations, especially without significant additional, and often external, resources. The focus on ensuring internal validity can limit external validity or ignore the realities of providing an accessible and flexible program to families. In addition, the time and resources necessary to conduct rigorous evaluations can be prohibitive, especially as public institutions, such as libraries, grapple with funding concerns or legislation that may impact the timeline for programming and evaluation. At the same time, it is important to recognize the limitations of less rigorous designs, such as pre-post examinations that cannot control for issues such as history or maturation. Employing more rigorous evaluation designs, such as the static group comparison presented here, that both meet the needs and reality of community-based organizations and reduce methodological concerns, is crucial to engage in participatory work between academic and public partners. In this case, because of the staggered delivery of the program, we were able to create a comparable control group within our sample, without limiting the families who received the program or the timeline for receiving it. Our approach is more rigorous than a typical static-group comparison that utilizes a general community sample for a comparison group, as they likely differ across a variety of characteristics, most importantly their desire to participate in the program. Various research designs exist that can be employed to meet the needs of community organizations and researchers implementing and evaluating a wide array of programs . To do sAlthough this study provides important information regarding the effectiveness of the FMS program for caregiving behavior, it is not without limitations. First, our study sample was relatively small to begin with and was even smaller after using one of the time-points of data as a comparison group. As a result, the study has low power, increasing the likelihood of undetected or under-detected effects. In addition, our findings may be limited by selection bias, as parents who knew about and elected to enroll in the program may score higher on some of the practices measured than the general population. Therefore, it is encouraging that significant results did emerge; however future studies should replicate these findings with a larger sample of families, including those who may not have known about the program on their own. As a result, all findings presented here are exploratory in nature and should be interpreted conservatively.Second, the participants in the study were relatively homogenous, especially in terms of gender and education-level; results may not generalize to male caregivers, families with low levels of education, or racial/ethnic groups not well represented in the study . Future work to evaluate the effectiveness of this program would benefit from recruiting a more diverse community sample of parents and young children including those who do not frequent the library setting. This may be achieved by ensuring that library-based programs, such as FMS, actively engage in anti-racist and equity-explicit approaches in both content  and delivery .Third, the data collected were all parent-report and the Math & Science Questionnaire used to capture program specific beliefs and practices is an investigator-developed measure used here for the first time. While this measure showed high internal consistency and predictive validity, its convergent and discriminant validity have not been tested. Future studies would benefit from the use of multi-method assessments of caregiving and need to examine the relationship between scores on the MSQ and well-established measures of positive caregiving to confirm its overall validity.Finally, although we believe the static-group comparison research design added methodological rigor to the study , it is not without limitations. Due to the correlational nature of the study, this evaluation was unable to isolate program impact. Therefore, a more rigorous experimental or quasi-experimental design to evaluate program effectiveness is needed. Despite the limitations associated with utilizing a post-test only design, strengths of the present study were the inclusion of covariates  and a novel analytic approach to analyzing the data. As a result, the results are stronger than traditional mean comparisons  because the estimates take into account outside factors that may be associated with caregiving outcomes and create a comparable control group.Despite the above limitations, the present study contributes novel findings regarding the promise of providing authentic STEM learning within community settings, through an enhanced storytime format. We find preliminary evidence that FMS can impact concrete caregiving behaviors related to early math and science learning. Due to its openness and accessibility, the library provides an exceptional opportunity for families to engage in programs to support their young children’s math and science learning. However, most of the families that participated in the program were White and of middle-high socio-economic status, so attention should be given to techniques that could reduce systemic barriers that might prevent families from participating in library programs and that may enhance alignment between families’ backgrounds and values with the program content and goals. Additionally, the nature of library programming also presents challenges for conducting a gold-standard rigorous evaluation; this is a concern likely shared by program implementers and evaluators in other community settings. Therefore, this paper emphasizes how other research designs – in this case, the static-group comparison design – can meet the needs of community-based programs and their participants, while still increasing the methodological rigor beyond a typical pre-post evaluation.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by the Arizona State University Institutional Review Board. The patients/participants provided their written informed consent to participate in this study.LG, MT, MP, and MW: study conception, design, and draft manuscript preparation. LG, MT, and MP: data collection, analysis, and interpretation of the results. All authors contributed to the article and approved the submitted version.This project was supported by the Arizona State Library, Archives & Public Records, a division of the Secretary of State, with federal funds from the Institute of Museum and Library Services.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


This qualitative study begins to explore cancer survivors’ evolving perceptions of “Focus on the Future,” a 6-week supportive virtual program led by trained volunteers and health care professionals. Through purposive sampling, participants (n = 10) enrolled in the program were individually interviewed shortly before attending, mid-way through, and at program completion. Interviews were digitally recorded and transcribed verbatim. Thematic analysis was used to develop key elements of program expectations and users’ perceptions over time. Three themes transpired from the data: (1) Trustworthiness and timeliness of survivorship information and expert guidance, (2) Normalization of survivors’ experiences, and (3) Virtual program delivery issues. Some participants’ perceptions remained unchanged from pre-program expectations to post-program completion such as appreciating the efficiency of virtual delivery and “health safe” exchanges given the COVID-19 pandemic. In contrast, other perceptions became more polarized including drawbacks related to “more superficial” virtual connections and uneven topic relevance as the program evolved. Program participants appreciated timely information and support from volunteers and experts through virtual means and consecutive weekly sessions. Gauging participants’ perceptions across time also offer opportunities to adjust program content and delivery features. Future research should explore key program development strategies to ensure that cancer supportive programs are optimally person-centered, co-designed, and situation-responsive. As cancer-related mortality declines, cancer survivors are becoming an ever-growing group in need of multidimensional support and follow-up ,2. SurviFocus on the Future, a six-week supportive program consisting of weekly two-hour sessions that provide knowledge and strategies to help cancer survivors adjust to life post-treatment. Each of the six sessions involves a trained volunteer moderator and expert guests . The trained volunteer moderates and leads the first session on coping skills and relaxation and then co-leads the remaining five sessions according to the topics addressed. For instance, sessions two through six include presentations by healthcare professionals related to five core topics: (1) maintaining an active lifestyle, (2) managing energy, (3) nutrition, (4) establishing life goals beyond cancer treatment, and (5) anxiety and fear of cancer recurrence reduction. In response to the COVID-19 pandemic, the program was adapted from an in-person to a virtual format.Hope & Cope is a 400-plus volunteer community-based cancer organization affiliated with the Centre Intégré Universitaire de Santé et de Services Sociaux (CIUSSS) Centre Ouest  in Montreal, Quebec, Canada. Its primary mission is to assist individuals affected by cancer to regain a sense of control, hope, and enhanced well-being while decreasing social isolation . With thCancer supportive programs are traditionally delivered in-person; however, there has been growing interest in providing support virtually because of its enhanced accessibility, contained cost, and convenience . Since tWhat program expectations do participants hold before attending the virtual program?What perceptions do participants have about the program at its mid-point?How do participants view the program once it ends?The current study explored users’ evolving perceptions of “Focus on the Future” as a cancer survivorship program newly adapted to a virtual format. Studying users’ perceptions is necessary to ensure effective service delivery. Ordinarily, the acceptability of such programs should be determined before full implementation ; howeverThe present study applied an exploratory, descriptive qualitative design . This deStudy participants (n = 10) were interviewed three times: pre-program attendance (T1), mid-way through the program (T2), and after program completion (T3). These interview guides are available online as Participants’ socio-demographic characteristics are presented in All participants felt uncertain about the program’s purpose and how it might be beneficial. At T1, participants wanted to receive clear, trustworthy information to help them adapt to treatment completion. One participant hoped the program would allow her “to see how others are living with cancer, if there are things that you can learn from those experiences, and if I can support someone else [Translated from French].” (P7) Seven participants mentioned feeling abandoned and uncared for once their cancer treatment ended. They noted, at present, that they rarely met with their oncologists and struggled to receive answers to their questions from the cancer team. Moreover, they expressed uncertainty regarding whether their ongoing health issues  were normal and the best course of action for health management. Three participant statements include:“Many people feel a little bereft, as though they’re sort of plunked into another universe, where they had all of this care and then there’s very little follow-up. And yet they still are suffering from the after-effects of chemotherapy.”(P4)“But in oncology, when it has been five minutes in the office, they [oncologists] quickly rush you out, they have other patients. Especially when it’s very busy [Translated from French].”(P1)“When our treatment ends, the most difficult thing is that suddenly we have no one taking care of us. I went from having 3 or 4 hospital appointments per week to 0, or once every six months. That is stressful [Translated from French].”(P6)Furthermore, five participants attempted to obtain information about how to best preserve health after cancer. Unfortunately, such efforts tended to generate more questions than answers, with ensuing skepticism concerning the validity of the information they found on their own. As one participant put it, “I bought myself 12 books [on cancer], and not one of them said the same things as the others. They contradicted each other [Translated from French].” (P1)Participants thought the healthcare professionals provided reliable information when interviewed at T2 and T3. One participant noted, “We really appreciate the fact that each talk is given by an expert who knows what she’s talking about.” (P4) However, the first session, which a trained volunteer-led, was received with less enthusiasm. A participant stated: “I wished it had been more developed; it was a volunteer. I think it should be someone more professional because they are naming ways […] we can use to calm anxiety.” (P5) Nevertheless, participants welcomed the variety of topics and their relevance, with a participant stating, “it would be impossible for anyone to come to Focus on the Future and not take something away.” (P3)Four participants were already familiar with the content covered; however, the depth of the information reinforced and validated their knowledge and encouraged them to start applying healthier habits. Conversely, one participant stated that she did not find the information helpful. As she explained:“I was expecting to have information that I wouldn’t have had already, but I did my own research. So, the information that they gave was information that I had already looked up. I guess I was more prepared and that’s why maybe I found it boring.”(P8)The program also offered additional resources and services to participants. These included the possibility of booking individual consultations and an introduction to informational resources such as survivorship-related apps or websites. One participant stated, “We found out there were social workers, physiotherapists, psychologists, pain management specialists. Nobody had really told us about these different specialists [during treatment] that we could call on or make appointments with.” (P4)Although all but one participant appreciated the information provided, some felt they would have benefited from receiving it earlier. Three participants wished the program had been available immediately after their treatment ended or even during treatment. However, participants who were only a few months post-treatment found the program’s timing appropriate. A participant observed:“I had done another session with Hope & Cope, a newly diagnosed program. We also had various professionals come in to talk to us. I think at that time, it was so overwhelming just being newly diagnosed and starting treatment and stuff. And at this point, being done treatment and having access to these speakers talk to us about OT, social work, nutrition, and all those things now was amazing. Because all I want to focus on now is taking care of myself and I don’t have the distraction of being in treatment.”(P10)Before attending the program, all participants welcomed the opportunity to connect with other cancer survivors to mainly compare how they were managing post-treatment. At T2, five participants found it easier to connect with “people who are going through similar things.” (P3) At T3, many participants were pleased with their newly found sense of community built over the six weeks. As one participant stated, “it makes us feel less alone [Translated from French].” (P6) Alternatively, two participants felt they did not connect well with the group because of differences in cancer or family situation. Despite this difference, at T3, all participants were comforted by their impression that other survivors were undergoing similar post-treatment issues. Two related participant statements include:“I feel relieved, thanks to the community. They make me feel less alone in this world, especially after the treatments.”(P5)“[The program] gave me comfort and awareness that I’m not alone and that what I’m feeling is normal.”(P10)In addition, by the end of the program, three participants felt grateful for their situation relative to others. As one participant acknowledged, “I feel that when I see the other participants, I realize that my situation is relatively privileged [Translated from French].” (P7)At T1, all participants welcomed the convenience of the virtual delivery format. Four participants indicated they would not have joined the program if not for virtual delivery. All participants stated they anticipated the primary benefit of online delivery to be time saved . At T2 and T3, this benefit was also highlighted. As a participant noted:“Sometimes the thought of having to get up, get dressed, get out the door, get into a car, get on a bus makes it difficult, and it can stop you from wanting to do things. But when all you have to do is turn on your computer and put a smile on your face, that makes it so much easier.”(P3)This participant also reported that another advantage of virtual attendance was that participants felt comfortable and safe, which she believed fostered greater participation. In her words, “because you’re on a screen, and we’re passing person to person, when it’s your turn to speak people tend to speak; where in a [in-person] group setting, people may hold back a little bit more.” (P3) In addition, participants found virtual delivery convenient because it did not exacerbate post-treatment fatigue and mitigated the risk of COVID-19 exposure.Despite these expected and tangible benefits, participants also discussed the potential shortcomings of virtual delivery. For example, at T1, some participants anticipated that it would be more challenging to connect with others virtually because “you relate to someone better if you’re actually in the same room.” (P9) At T2 and T3, some participants reversed some of their earlier opinions regarding virtual delivery. For example, despite initial concerns, four participants felt that they had made meaningful connections by initiating private chat conversations or getting participants’ contact information to further discuss relevant topics outside of the program. Two participants reported:“I know in the past, I said there’s no one-on-one connection, but by the last session, I was able to privately chat with other participants and that was great. So, I don’t really have any cons [about virtual delivery of the program] anymore.”(P10)“I really didn’t find that [meeting virtually] stopped us from communicating with other people. I think that since we weren’t too big of a group, it helped us talk and exchange. I think we would have done the same in-person [Translated from French].”(P2)Still, other participants felt uncertain whether in-person attendance may have facilitated enhanced interpersonal connections. A participant noted:“People tell us that we’re social creatures. I wonder: Is socializing [online] really as good? It works, yes. But I don’t know if long-term it’s as good for us as in-person contact […] I wonder, if in-person, we would have developed more ties with the other participants [Translated from French].”(P7)At T3, some participants discussed the potential disadvantages of virtual formats. For instance, four participants stated that they would have preferred to complete the program in-person because of their diminished “Zoom tolerance” and the challenge of staying focused for two hours in a virtual setting. Similarly, at T1, a participant welcomed the idea of meeting virtually because she could stay home with her children. However, by T3, she thought that continuous accessibility to her children led to significant interruptions: “when you’re home, those distractions are still there.” (P8) Overall, even participants who initially would have preferred an in-person program believed that virtual delivery was better than no structured support at all: “If I have to choose between having none [support], or having Zoom, I by far prefer having Zoom [Translated from French].” (P6)This qualitative study explored participants’ expectations and perceptions of Focus on the Future, a new virtual supportive program tailored to the needs of cancer survivors. Participants’ perceptions were documented before the program started, midway through the program, and shortly after the program ended. Findings underscore that cancer supportive programs must be timely and responsive to the needs and preferences of their users to optimally serve individuals transitioning to a new phase in their cancer experience. Likewise, participants also expressed the need to receive psychosocial and informational support as soon as possible during the initial days or weeks following treatment completion. These findings align with those of Raphael, Frey, and Gott  concerniMany participants also felt frustrated that they no longer knew where to receive follow-up care as their access to regularly scheduled treatment appointments had concluded. Accordingly, participants welcomed and conveyed confidence in the information provided by healthcare professionals and appreciated the rare opportunity to ask questions during these presentations. This finding is consistent with Kent et al.’s  observatParticipants also reported that attending the program virtually reduced their anxiety about coming into contact with the COVID-19 virus, which may have played a role in their acceptability of virtual support. Indeed, the results of a survey on cancer services during the pandemic conducted by the Quebec Cancer Coalition  found thDespite accessibility and convenience, once the virtual program ended, some participants continued to assert that they would have preferred in-person delivery. They reported being fatigued by virtual meetings over Zoom, while some felt that sessions should have been shortened. This is consistent with Shoshan and Wehrt’s  findingsThis study has several limitations. First, participants’ views of the program were explored during the pandemic. Such unprecedented circumstances potentially affected the program’s acceptability, given the general imperative for virtual service delivery. Second, the characteristics of individuals who enrolled in the program are potentially different from those who did not, thereby limiting the generalizability of these programs. Third, the sample was homogeneous  and views may have been different with a more diverse sample of participants. Last, program acceptability based on the types of cancer diagnosis, treatment, and stages was not explored.Researchers can identify the population’s needs on key points along with the transition into survivorship and disseminate their findings to develop more targeted support. Moreover, socializing among participants should be actively encouraged, with interpersonal bonding exercises built into the initial stages of the program. In virtual programs, promoting chat features or integrating a socializing activity into sessions could help facilitate this task. Furthermore, an additional session, facilitated by a psychologist, could be added at the beginning of the program dedicated to group formation and cohesion. In addition, hybrid support  could be developed and tested for efficacy. Such hybrid models could balance the convenience of virtual delivery with the enhanced interpersonal intimacy of in-person modalities.As the number of cancer survivors continues to grow significantly, so does the onus on identifying and addressing survivors’ unmet needs using innovative, person-centered, co-designed, and situation-responsive approaches. Recognizing the rapid proliferation, convenience, and sustainability of digital health solutions also means that continuous quality improvement measures, users’ involvement in their development, and systematic evaluation must be prioritized. This study’s findings suggest that a comprehensive virtual program that relies on trained volunteers and healthcare professionals can help to address the needs of participants. Future research would deepen our understanding of virtual support’s long-term and post-pandemic impact. In addition, ongoing program evaluation, initiated even before the program occurs, is key to inform and adjust program content and delivery in real-time, whether virtual or in-person.


Communication breakdown between patients and health care professionals poses an accessibility gap preventing adequate health care. The Empowered Patient Program was developed to support people with Parkinson’s in improving their health communication skills/strategies and thus facilitate the accessibility gap in their care.Our pilot study aimed to test the feasibility and preliminary effect of the Empowered Patient Program within a small cohort of individuals with Parkinson’s disease.We completed a pre-test-post-test pilot study. Eight participants completed the Empowered Patient Program for this pilot study. Data collection was completed by administering a questionnaire prior to the program, immediately after program completion, and three months post-completion. We additionally conducted two telephone interviews with the participants to qualitatively gather feedback on the program.The program elucidated statistically significant improvement across domains/areas of knowledge (p = 0.01) and self-perceived communication skills (p = 0.04) among the participants. Through feedback from the patient interviews, it was confirmed that these significant improvements were owed largely to the high level of organization, intuitive user interface, and suitable content of the program for this cohort.The Empowered Patient Program pilot resulted in a desired outcome indicating its satisfactory development. The next steps are to test the Empowered Patient program in a larger sample. However, the literature highlights a concerning communication breakdown between people with PD and their health providersWe have developed a communication program titled the ‘Empowered Patient Program.’ The program aims to improve knowledge about health communication, health communication-related self-efficacy, health communication and health service navigation skills in people with PD. The program consists of three sequential workshops. First, the ‘Direct Communication’ workshop educates on overcoming communication barriers by using different communication styles. Second, the ‘Difficult Health Topics’ workshop trains participants to conduct conversation on sensitive topics such as sexual health, mental health, and bowel and bladder problems. Finally, the ‘Preparing for the Appointment' workshop educates participants on healthcare professional’s (HCPs) role in the care of PD. The program is designed to be conducted in a face-to-face format for groups of six to twelve participants. The activities include group discussion, role-play, and facilitator discussion. Each workshop is 2.5 h in length.The content of the program was developed based on an extensive literature review and expert consultation. The expert panel included people with PD, their family members, HCPs who visit people with PD on a regular basis, and the case managers of Parkinson Canada. The literature reviewExpert consultation was done using a qualitative study  to evaluate the program’s content and user-friendly interface. An expert panel was assembled from people with PD (n = 5), their family members and caregivers (n = 2), educators and case managers of Parkinson Canada (n = 4), as well as HCPs (n = 4) including physiotherapists, occupational therapists, and nurses reviewed the program manuals and provided feedback. The focus group discussion and individual interviews followed a semi-structured format guided by a series of open-ended questions (Supplementary Table 1). The expert panel concluded that the program adequately covered essential topics that could promote communication skills. They recommended changes to further adapt the program to the physical and cognitive needs of people with Parkinson’s disease (Supplementary Table 2). We refined the program using the provided expert recommendations (changes in supplementary table 2) and then conducted a pilot study. The pilot study’  aimed to test the feasibility of the recruitment process, implementation of the program, and preliminary effect on health communication- related self-efficacy, knowledge, communication with HCPs and health service navigation in a small group of people with PD. This article presents the details of that pilot study.22.1We completed a pilot pre-test-post-test study that collected survey data from the participants one week prior to the start of the program, immediately after the program’s completion, and three months after the program. We also completed two telephone interviews with each participant- the first interview was conducted immediately after the program completion and the second was conducted after three months. The program was conducted according to detailed, step-by-step instructions of the program manuals in an effort to enhance intervention fidelity.2.2We recruited participants using a convenience sampling method within the Toronto area through Parkinson Canada, including participants that could communicate in English who had a self-reported diagnosis of PD. No exclusion criteria were considered. We circulated study flyers through email and personal communication for potential participants to contact us if they desired to voluntarily participate in this program. Nine participants consented to take part in the program. However, one participant was unable to complete the program due to urgent medical appointments, and thus their data was excluded from the analysis. Therefore, the data of eight participants was included for the analysis. 2.3The feasibility data was collected on recruitment, retention, and delivery of the program. First, the feasibility of recruitment was determined by comparing the eligible and enrolled participants. Second, the feasibility of retention was determined by the proportion of enrolled participants who completed the program. Finally, the feasibility of program delivery was determined by administering the program evaluation component of the Health Education Impact Questionnaire (heiQ)The impact of the program was assessed through the Communication Perceived Self-efficacy ScaleHealth status and socio-demographic information were collected by Health Utilities Index 3 (HUI)The telephone interviews were semi-structured through the use of pre-set, open-ended questions  about pr2.4Descriptive analysis (using SPSS v. 24) techniques were used for quantitative data that included participant's characteristics, outcome measures, and feasibility data. The Wilcoxon Signed Ranks Test was used to test for statistical significance as the data were non-parametric and met test assumptions. The missing data were treated by imputation; the item-level missing data at the pre-test period was imputed by the variable's mean; the missing data at post-test and follow-up was imputed by the Last Observation Carried Forward method. The qualitative data from interviews and field notes were analyzed using thematic analysis.33.1Feasibility of recruitment was moderate, with 8 of the fifteen (53.3 %) interested participants taking part in the program. For seven interested participants who decided not to participate, incompatible timing of the program (10:00–11:30 am) with their schedules was the reported reason.Feasibility of retention was high, in that the percentage of participants attending all three workshops was 62.5 % (n = 5), and two workshops were 37.5 % (n = 3).Feasibility of program delivery was also high, based on a mean score of the heiQ Program Evaluation tool of 3.85 out of 4, with the range of item-level mean scores from 3.5 to 4 . The not3.2The participants improved in all administered outcome measures in the post-test and follow-up period . However3.3“It is sort of demystifying the family physician's role and specialist's role and everything, the difference between the two.“(Participant 2)Participant feedback emphasized that the program's contents are relevant, meaningful, systemic and helpful for understanding health communication problems as well as for gaining skills to overcome those problems. The findings resembled the result of the heiQ program evaluation tool that showed participants (n = 8) either “strongly agreed” or “agreed” about the relevance of the program content to their own situation . They also said that the program changed their thought perspective from reactive to proactive and made them curious, determined, and confident about their health care. Participants expressed that they actively learned about the roles of different HCPs involved in the care of Parkinson's disease. As a participant said:“I would definitely say so [format was suitable] because the discussion was wide open. In other words, it wasn't just driven one-way communication from like, say from you [facilitator] or the doctor to us. It was more information from us to each other, through the doctor and yourself. So, it was sort of round-of-the-table discussion, and I was learning from everybody. I was learning from you guys, from the other participants in the group.”(Participant 1)Overall, participants (n = 8) also said that the program's format was appropriate, encouraging, professional, and well-organized. A sample testimonial provided by one participant states:The three-month follow-up data showed that participants (n = 5) retained and used the knowledge and skills learned from the program in their subsequent healthcare visits. Participants (n = 2) further elaborated that they felt confident and empowered in communication with HCPs.However, some participants (n = 4) reported that they felt awkward while doing the role-playing, although they believed that the activity was a good way of learning. Ultimately, they recommended displaying model role-playing, presenting case scenarios, creating an online version of the program, and considering peer-led workshops.4The improvement of patient self-perceived health communication after attending the Empowered Patient Program was found to be greater than the change seen in self-perceived health communication skills due to other self-management programs (0.42–0.54 mean change in Empowered Patient in comparison to 0.2–0.46 in other programs)The improvement in health service navigation after completing the program was not statistically significant. Different factors might have influenced the significance level of the outcome. Firstly, the sample size of the study was small. Next, participants’ characteristics, including age and duration of disease, may have influenced the outcome in ways that were not captured by this pilot study. For example, Nolte, Elsworth, Sinclair, & Osborne (2007) illustrated that younger patients are more likely to benefit from the self-management program because they present with lower baseline scores and higher motivation than older patientsThe pilot study recruitment was slow even though an extensive network of people with PD was used for recruitment. Furthermore, people with Parkinson’s disease who were not connected with Parkinson Canada could not be reached. Therefore, it is recommended that the larger study’s recruitment strategies target representative samples from the population, beyond those who are connected with Parkinson Canada. Additional recruitment strategies, including recruiting through hospitals, social media, print media, and community settings, can be utilizedThere are limitations to the study. The recruited participants were homogeneous in terms of disease severity and educational level. The mean HUI 3 (0.72) score of the study participants was comparatively higher than the HUI 3 score (95 % CI: 0.48-0.063) found in other studies 5It is anticipated that more people with Parkinson’s disease will be affected by the patient-provider communication breakdown because of growing burden of the disease. The Empowered Patient Program shows great promise in facilitating superior quality of care within existing health service systems, and amongst an increasing prevalence of PD cases.Muhammed Shahriar Zaman: Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Validation, Software, Writing – original draft. Setareh Ghahari: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – review & editing. Mary Ann McColl: Conceptualization, Formal analysis, Investigation, Methodology, Supervision, Validation, Writing – review & editing.The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.