To report pancreas surveillance outcomes of high-risk individuals within the multicenter Cancer of Pancreas Screening-5 (CAPS5) study and to update outcomes of patients enrolled in prior CAPS ...studies.
Individuals recommended for pancreas surveillance were prospectively enrolled into one of eight CAPS5 study centers between 2014 and 2021. The primary end point was the stage distribution of pancreatic ductal adenocarcinoma (PDAC) detected (stage I
higher-stage). Overall survival was determined using the Kaplan-Meier method.
Of 1,461 high-risk individuals enrolled into CAPS5, 48.5% had a pathogenic variant in a PDAC-susceptibility gene. Ten patients were diagnosed with PDAC, one of whom was diagnosed with metastatic PDAC 4 years after dropping out of surveillance. Of the remaining nine, seven (77.8%) had a stage I PDAC (by surgical pathology) detected during surveillance; one had stage II, and one had stage III disease. Seven of these nine patients with PDAC were alive after a median follow-up of 2.6 years. Eight additional patients underwent surgical resection for worrisome lesions; three had high-grade and five had low-grade dysplasia in their resected specimens. In the entire CAPS cohort (CAPS1-5 studies, 1,731 patients), 26 PDAC cases have been diagnosed, 19 within surveillance, 57.9% of whom had stage I and 5.2% had stage IV disease. By contrast, six of the seven PDACs (85.7%) detected outside surveillance were stage IV. Five-year survival to date of the patients with a screen-detected PDAC is 73.3%, and median overall survival is 9.8 years, compared with 1.5 years for patients diagnosed with PDAC outside surveillance (hazard ratio 95% CI; 0.13 0.03 to 0.50,
= .003).
Most pancreatic cancers diagnosed within the CAPS high-risk cohort in the recent years have had stage I disease with long-term survival.
Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic ...therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum.
We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences.
Caregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried).
Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions.
Tailored supportive resources are needed for caregivers throughout survivorship transitions.
The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.
...Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.
Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.
Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.
Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of ...illness-related stressors.
This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty.
Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1–18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically.
Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive.
Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.
•Uncertainty surrounded treatment options, efficacy, side effects, and risks.•Uncertainty was present about recurrence and how to approach the child's future.•Management strategies involved online information, clinicians and support groups.•Support of parents' online information-seeking was mixed among clinicians.
A greater understanding of the county-level differences in human papillomavirus (HPV) vaccination rates could aid targeting of interventions to reduce HPV-related cancer disparities.
We conducted a ...mixed-methods study to compare the stakeholder-reported barriers and efforts to increase HPV vaccination rates between counties within the highest, middle, and lowest HPV vaccine initiation (receipt of the first dose) rates among 22 northern Florida counties. Between August 2018 and April 2019, we recruited stakeholders (n = 68) through purposeful and snowball sampling to identify potential participants who were most knowledgeable about the HPV vaccination activities within their county and would represent a variety of viewpoints to create a diverse picture of each county, and completed semi-structured interviews. County-level HPV vaccine initiation rates for 2018 were estimated from the Florida Department of Health's immunization registry and population counts. Implementation strategies were categorized by level of importance and feasibility using the Expert Recommendations for Implementing Change (ERIC) taxonomy. We compared the barriers and implementation strategies for HPV vaccination between tercile groups of counties by HPV vaccine initiation rates: highest (18 stakeholders), middle (27 stakeholders), and lowest (23 stakeholders).
The majority of the 68 stakeholders were female (89.7%), non-Hispanic white (73.5%), and represented a variety of clinical and non-clinical occupations. The mentioned barriers represented five themes: healthcare access, clinician practices, community partnerships, targeted populations, and cultural barriers. Within themes, differences emerged between county terciles. Within healthcare access, the highest rate county stakeholders focused on transportation, lowest rate county stakeholders focused on lack of clinicians, and middle county stakeholders mentioned both. The number of ERIC quadrant I strategies, higher feasibility, and importance described decreased with the tercile for HPV vaccination: highest = 6, middle = 5, and lowest =3 strategies.
The differing barriers and strategies between the highest, middle, and lowest vaccination rate counties suggest that a tailored and targeted effort within the lowest and middle counties to adopt strategies of the highest rate counties may reduce disparities.
Pediatric blood cancer diagnosis is a stressful experience for families as it can involve urgent treatment that can be life-threatening and require extended hospital stays. Little is known about the ...experiences of parent caregivers of children with a blood cancer during the diagnosis period and how families' needs may differ in light of the patient's developmental phase in the life span.
We conducted semistructured in-depth interviews with 20 parent caregivers (aged 30-65) of children diagnosed with a blood cancer, recruited through The Leukemia & Lymphoma Society's (LLS) constituency. Interview transcripts were thematically analyzed using the constant comparative method. To elucidate similarities and differences in caregiving experiences, findings were compared across parents with children diagnosed in three developmental periods: infancy-early childhood, age 0-6 (
= 9); pre-early adolescence, aged 9-14 (
= 5); and late adolescence-emerging adulthood, aged 16-27 (
= 6).
Across all developmental periods, parents described three similar caregiving experiences during the diagnosis period:
,
, and
Among caregivers of younger children, persistence was motivated by parental intuition and challenges included coping with traumatic physical and psychological impacts of treatment procedures. For caregivers of late adolescents-early adults, persistence was motivated by the child's self-assessment and fertility-related concerns emerged.
Results illustrate core issues for parent blood cancer caregivers and highlight ways to tailor supportive resources that facilitate good communication practices and shared decision-making to children's distinct developmental needs.
Purpose
Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing ...supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children.
Methods
We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system.
Results
Caregivers ranged from age 30 to 64 (
M
= 43). They described four ways that caregiving impacted themselves and the larger family system: (1)
disruption of home life
, (2)
emotional (dis)connection
, (3)
juggling competing roles
, and (4)
developing resiliency and intimacy
. Perspectives within each category differed based on their relational role to the patient or in the broader family.
Conclusions
Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.
Turning Point Analysis (TPA) is a methodological approach that allows scholars to retrospectively capture change over time by identifying instances of critical change (i.e., turning points) ...encountered across a given time period. While TPA has been used to examine time as a variable in health and illness experiences, the use of the method in behavioral medicine scholarship may be limited by the lack of understanding of TPA procedures and applicability.
To describe how TPA has been used and enhance its accessibility by identifying and synthesizing methods of TPA data collection and analysis.
A systematic search of electronic databases, including Academic Source Premier, Psychology and Behavioral Sciences Collection, APA PsycInfo, and ProQuest Dissertation and Theses Database, was conducted in May 2020. In July 2020, we used hand searching to identify additional articles, including forward and back tracking seminal articles on TPA. Studies were screened in duplicate.
Of the 1184 studies screened for this review, we included 52. Studies used TPA to examine relational (k = 40), organizational (k = 6), and individual (k = 6) variables and included an analysis of either turning points (k = 28), the trajectories of change over time created by the turning points (k = 3), or both (k = 21). Turning points and trajectories were captured and analyzed using qualitative and quantitative analytic approaches, with most studies using either purely qualitative (k = 26) or mixed methods (k = 21).
The findings of this review provide insight into the varied applications of TPA and suggest the potential value of this methodological approach in better understanding health experiences across time. By synthesizing the procedural and analytic steps to conducting a TPA, this review could also increase the accessibility and use of TPA in behavioral medicine research.
•Turning point analysis (TPA) captures change over time in social contexts.•TPA has utility in health research as time is integral in illness experiences.•The TPA methodological approach be customized to fit different research contexts.
