Impact of lymphoma survivorship clinic visit on patient-centered outcomes.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 64-64 ◽  
Author(s):  
Carrie A. Thompson ◽  
Jessica N Towns ◽  
Laurie Dripps ◽  
Sarah Jenkins ◽  
Kandace Lackore ◽  
...  
Keyword(s):  
Response Rate ◽  
Social Issues ◽  
Familial Cancer ◽  
Clinic Visit ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Patient Centered ◽  
The Impact

64 Background: The goals of our Lymphoma Survivorship Clinic (SC) are to coordinate care, educate patients, and create a survivorship care plan (SCP). The aim of this study was to determine if patient-centered outcomes are improved after a SC visit. Methods: From 11/13-5/15, surveys were mailed to recently-treated lymphoma patients who were within 4 weeks of their last visit and in remission. Quality of life (QOL) was measured with PROMIS and distress was measured with the Impact of Events scale. Responses between those who attended SC and those who were eligible but did not attend were analyzed. Results: There were 96 surveys sent to the SC group; 59 were returned (61% response rate). Of the non-SC group, 140 surveys were sent and 84 were returned (60% response rate). Mean age was 57 years (range 23-77) in the SC group and 59 years (23-88) in the non-SC group. There were more females in the SC group (52% vs 30%) but no differences in race, marital status, education, or health literacy. Those who attended the SC were more likely to recall receiving a summary of cancer treatment and recommendations for follow-up care (90% SC vs. 75% non-SC, p = 0.03). Furthermore, SC attendees were more likely to “definitely” recall discussion on improving health or preventing illness (89% vs. 53%), getting help in making changes in habits/lifestyle (76% vs. 50%), diet (80% vs. 31%), and exercise (82% vs. 51%), all p < 0.001. There were no differences in discussions regarding smoking, follow-up testing, and symptom monitoring. The SC group was less likely to need more information regarding sexuality (6% vs 20%, p = 0.045). There were no differences in need for information regarding anxiety, fitness, familial cancer risk, fertility, complementary therapies, and social issues. The SC group was slightly more confident that they could get information or advice related to cancer (completely confident 76% vs. 61%, p = 0.07). There were no differences in QOL or distress. Conclusions: A Lymphoma SC visit increased receipt of SCP and provided more information on survivorship issues, particularly health behaviors, but did not improve QOL or distress. Further study is needed to determine if this leads to long-term health benefits.

Developing a cultural and socioecological patient-centered survivorship care plan template for African American survivors.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 40-40
Author(s):  
Kimlin T. Ashing-Giwa ◽  
Carlyn Tapp ◽  
Shirley Brown ◽  
June Smith ◽  
Eudora Mitchell ◽  
...  
Keyword(s):  
African American ◽  
Cancer Survivors ◽  
Medical Care ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Patient Centered ◽  
Community Based ◽  
Follow Up Care

40 Background: Cancer and its treatments bring added health and life challenges. Cancer survivors require ongoing surveillance and medical care. To facilitate best practice in follow-up care, the Institute of Medicine, the American Society of Clinical Oncology and advocacy organizations advise that cancer survivors be provided with treatment summaries and Survivorship Care Plan (SCP). African-American breast cancer survivors (AABCS) have poorer outcomes characterized by greater morbidity and mortality, hence warranting their careful surveillance and follow-up medical care. SCP investigations are urgently needed to improve follow-up care and cancer outcomes in AABCS. Methods: The study embraced a community-based participatory research framework, building upon a series of research projects conducted by the African American Cancer Coalition, a partnership of scientific researchers and community-based advocates. Three informative focus groups were conducted with AABCS (N=25) and advocates (N=3) to obtain input on cultural and socio-ecological SCP contents to increase patient responsiveness. Results: AABCS believed that increased mortality may be due to comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP attend to and document all comorbidities and medications; allow for participation of primary care providers; referrals for providers especially surgeons who are familiar with treating AABCS to the reduce keloid, and health advisories on nutrition, exercise and stress management. Quality-of-life related components and community referrals should be included because they are important for overall health. AABCS noted the importance of spirituality in life, and the disproportionately high levels of socioecological stress in the community. Conclusions: Participants infused cultural and socioecologic relevance towards the development of a patient centered SCP template to increase acceptability and utilization among AABCS. Participants underscored that developing the SCP responsive to AABCS and facilitating adherence to SCP recommendations, are areas warranting increased intervention and research.

The impact of the survivorship care plan on health care use: 2-year follow-up results of the ROGY care trial

2017 ◽  
Vol 12 (1) ◽  
pp. 18-27 ◽  
Author(s):  
Mette Moustgaard Jeppesen ◽  
Nicole P. M. Ezendam ◽  
Johanna M. A. Pijnenborg ◽  
M. Caroline Vos ◽  
Dorry Boll ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Use ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
The Impact

scholarly journals A portable survivorship care plan: a tool that helps educate and improve knowledge in childhood cancer survivors

2020 ◽  
Vol 29 (1) ◽  
pp. 169-177
Author(s):  
Patricia Murphy ◽  
Alyssa Levine ◽  
Tanya Lerma ◽  
Sabrina Young ◽  
Jimmy Hwang ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Late Effects ◽  
Credit Card ◽  
Randomized Study ◽  
Healthcare Providers ◽  
Childhood Cancer Survivors ◽  
Clinic Visit ◽  
Care Plan ◽  
Survivorship Care Plan

Abstract Purpose There is a growing population of survivors of childhood cancer at risk for late effects that can affect their overall quality of life. There is evidence that they have inadequate knowledge about their diagnosis, treatment, and subsequent late effects. A randomized study was conducted to determine if a portable credit card–sized plastic card, the “Survivor Healthcare Passport,” improved the survivor’s knowledge of diagnosis, treatment, risks, and follow-up care. The study included 126 patients 2 years post-end of cancer treatment and took place at the UCSF Benioff Children’s Hospital Survivorship Clinic. Methods Patients attending the UCSF Survivorship clinic were randomized to receive or not receive a passport at their first survivorship clinic visit. Each groups’ knowledge of diagnosis, treatment history, and follow-up needs was assessed at three time points with a questionnaire. Results Patients who received the passport distributed immediately after their visit demonstrated improved and sustained knowledge compared with survivors who did not receive the passport until more than 4 months later. Conclusion Enhancing a survivor’s knowledge is an important endeavor and a continual challenge for practitioners in survivorship clinics. This portable educational tool helps improve patient knowledge of their cancer, therapy, and follow-up needs. By providing a tangible card that is quick and easy to access, survivors have access to their treatment late effects and follow-up needs that can also be shared with other healthcare providers.

scholarly journals Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs

2014 ◽  
Vol 8 (5-6) ◽  
pp. 190 ◽  
Author(s):  
Patricia Moretto ◽  
Michael A.S. Jewett ◽  
Joan Basiuk ◽  
Deborah Maskens ◽  
Christina Maria Canil
Keyword(s):  
Kidney Cancer ◽  
Fear Of Recurrence ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Emotional Impact ◽  
Cross Sectional ◽  
Term Care ◽  
Effective Measure ◽  
The Impact

Introduction: There is lack of evidence-based literature addressing comprehensive long-term care for kidney cancer (KC) survivors. Additionally, it is unclear if the concerns of KC patients/caregivers are being adequately addressed. Therefore, Kidney Cancer Canada (KCC), a patient-led support organization for Canadians diagnosed with KC, commissioned this first recorded survivorship survey specific to patients/caregivers diagnosed with localized KC. Methods: A cross-sectional on-line survey for Canadian patients/caregivers with non-metastatic KC at diagnosis, and a separate parallel survey of Canadian urologists were performed. The primary objective was to assess patient/caregivers’ and urologists’ perceptions of information provided, as well as the physical/psychological/emotional impact of KC treatment. Results: Urologists recalled providing information about surgical complications (90%) and their management (63%), while patients/caregiver recall was much less (33% and 35% respectively). Ninety-three percent of urologists recalled providing information on cancer recurrence, but only 42% of patients/caregivers remembered receiving this information. The concerns identified by patients/caregivers and urologists were similar: fear of recurrence, concerns about cancer, fatigue, and anxiety. Importantly, all agreed that survivorship information was important. Education of both patients/caregivers and physicians and the development of guidelines were factors identified to ensure optimal KC survivorship. Discussion/Conclusions: There was some discordance between urologists’ and patients/caregivers’ rates of recall of information provided. Patients/caregivers would have desired more information about their cancer, long-term follow-up, and potential complications. Provision of a survivorship care plan tailored to KC may be an effective measure to address these needs. The impact of such an intervention on the survivor outcomes should be rigorously assessed.

scholarly journals Measuring the Impact of Human-Centered Design Research

2021 ◽  
Vol 4 (1) ◽  
Author(s):  
Victoria Smith ◽  
Gina Claxton
Keyword(s):  
Health Research ◽  
Design Research ◽  
Response Rate ◽  
Human Centered Design ◽  
Participant Engagement ◽  
Survey Response Rate ◽  
Potential Impact ◽  
The Impact

Background/Objective: Human-centered design (HCD) is an approach to research that aims to facilitate participant engagement in research studies. Research Jam is the Patient Engagement Core of the Indiana Clinical and Translational Sciences Institute (Indiana CTSI) that applies HCD to health research. The objective of this project is to assess the impact and efficacy of the HCD approach in health research. This project follows-up with previous investigators who have completed a project with Research Jam to measure impact on investigators’ attitudes towards HCD and participant engagement as well as the efficacy and implementation of the project-specific tools and deliverables that resulted from the work with Research Jam.  Project Methods: A survey was developed in Qualtrics and sent to investigators (N=34) from Research Jam’s portfolio of completed projects (2015-2020). Five follow-up interviews were conducted and analyzed in NVivo. Results: Survey response rate was 50%. Of the projects listed by the investigators, 89% had deliverables that were reported as feasible and relevant to the target audience. Long-term sustainability of the deliverables showed room for improvement. For all projects, 81% were reported to have helped the investigator learn how to better engage with participants to inform their subsequent research. Potential Impact: These findings demonstrate that HCD produces deliverables that are feasible and relevant to target audiences, and health researchers view HCD as a useful method to engage more directly with research participants. These results can serve as a guide for Research Jam to continue to refine processes, such as improving long-term sustainability of the deliverables, and to direct future projects.

Survey of cancer survivors' understanding of their cancer care and follow-up plan.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 51-51
Author(s):  
Farhan Shahzad Imran ◽  
Caroline Andrews ◽  
Kathy Doerner ◽  
Brittany Heatherington ◽  
Susan Hodes ◽  
...  
Keyword(s):  
Side Effects ◽  
Cancer Survivors ◽  
Cancer Care ◽  
Cancer Recurrence ◽  
Cancer Surveillance ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Curative Intent

51 Background: The follow up care for cancer survivors is often sidelined due to the lack of well-defined guidelines. A “Survivorship care plan (SCP)” has been proposed to summarize key aspects of the cancer care and the future follow-up plan. Cancer survivors who had not received SCP were surveyed to gauge their understanding of their cancer care. Methods: Patients who had completed cancer therapy with curative intent during a 2 year period (2013-2014) were mailed the survey questionnaire. This questionnaire was designed to test understanding of their diagnosis (stage), care team, symptoms of relapse, surveillance plan, and short and long term side effects of their treatment. The Cancer Center’s medical record database was systematically searched to identify subjects. Microsoft Excel was used to calculate descriptive statistics on the quantitative data and frequency counts for the qualitative data. Results: 161 cancer survivors completed the survey of the total 342 mailed. The majority of these patients had breast (92%) cancer. Other cancer survivors had a diagnosis of lung (6%) and colon (2%) cancer. Only 2% patients did not know their cancer diagnosis. 12% patients did not know the stage of their cancer. 98% patients were able to report their surgeons’ name, however 85% and 89% could not recall their medical and radiation oncologist, respectively. 95% patients recalled discussing their follow-up plan with their provider but only 86% patients knew which test(s) should be performed as part of their cancer surveillance. Only 68% patients accurately listed a few symptoms suggesting cancer recurrence, while 62% survivors correctly listed a few potential long term side-effects of cancer treatment. Conclusions: There are several deficiencies in survivors’ understanding of their cancer care. Further research is needed to assess and compare if these deficits can be improved by a SCP document.

Evaluating a clinically and culturally informed survivorship care plan trial for African American breast cancer survivors (AABCS).

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 71-71
Author(s):  
Kimlin Tan Ashing ◽  
Kommah McDowell ◽  
Shirley Brown ◽  
Mayra Serrano ◽  
Lily L. Lai ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Breast Imaging ◽  
Self Report ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Trial Participation ◽  
Survivorship Care ◽  
Culturally Informed ◽  
The Impact

71 Background: This randomized control study was designed to evaluate the impact of trial participation on access to survivorship care planning (SCP) and adherence to surveillance recommendations among AABCS. Methods: AABCS were recruited from the State Cancer Registry and support groups. This trial consisted of 1:1 randomization into two conditions: 1) peer navigation + clinically- and culturally-informed breast cancer (BC) materials, and 2) clinically- and culturally-informed BC materials, only. AABCS (N= 29) from advocacy groups were trained as peer navigators, with on-going supervision and monitoring by the research team. The ASCO-SCP template was modified based on input from survivor-advocates to increase clinical, cultural and socio-ecological relevance. The study was implemented using community based-participatory approach. Mailed, self-report assessments were taken at baseline and at 6- and 12-month follow-up. Results: In total, 112 AABCS who were 6-18 months post initial primary treatment for stage 0-3 BC participated in the study. There was a 74% participation rate and a 64% completion rate. At 6- and 12-month follow-up, 65% and 73% reported access to a SCP, respectively. Improvements from baseline in adherence to SCP surveillance recommendations were observed at 6- and 12- month follow-up assessments regarding physical exam (45.6%, 71.2%, 71.0%, respectively), pelvic exam (39.7%, 45.2%, 46.5%, respectively), breast self-exam (45.0%, 79.0%, 81.2%, respectively), and breast imaging (31.1%, 75.6%, 81.1%, respectively) (p< 0.05). There we no significant demographic, medical or study outcome differences by study condition. Conclusions: Our study findings demonstrate the effectiveness of trial participation in facilitating access to SCP and improved adherence to recommended surveillance. Participation of survivor-advocates in developing culturally-informed BC informational and survivorship care strategies can enhance acceptability and sustainability, especially in community and primary care settings. Untapped opportunities exist for survivor-advocate engagement in survivorship research and practice to address inequities. Clinical trial information: NCT01824745.

scholarly journals Development and evaluation of the Good Grief program for young people bereaved by familial cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Pandora Patterson ◽  
Fiona E. J. McDonald ◽  
Elizabeth Kelly-Dalgety ◽  
Bianca Lavorgna ◽  
Barbara L. Jones ◽  
...  
Keyword(s):  
Social Support ◽  
Personal Growth ◽  
Unmet Needs ◽  
Meaning Making ◽  
Familial Cancer ◽  
Psychosocial Needs ◽  
Program Satisfaction ◽  
Death Of A Parent

Abstract Background Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief – a 3-day camp-based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. Methods One hundred and nine Australian AYAs (68% female; age: 12–25 years, M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping (Perceived Ability to Cope with Trauma Scale) and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program’s conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program. Results Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making. Conclusions Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer.

scholarly journals Impact of Frailty on Medical and Long-Term Care Expenditures for the Elderly Age 75 or Over in Japan

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 176-176
Author(s):  
Hiroto Yoshida ◽  
Yuriko Kihara
Keyword(s):  
Long Term Care ◽  
The Elderly ◽  
Elderly Age ◽  
Term Care ◽  
Intentional Weight Loss ◽  
Long Term Care Insurance ◽  
And Gender ◽  
The Impact

Abstract This study examined the impact of frailty on medical and long-term care expenditures in an older Japanese population. The subjects were those aged 75 years and over who responded to the survey (March 2018) in Bibai, Hokkaido, Japan (n=1,203) and have never received certification of long-term care insurance at the survey. We followed up 867 individuals (72.1%) until the end of December 2018 (10 month-period). We defined frailty as a state in performing 4 items and over of 15 items which were composed of un-intentional weight loss, history of falls, etc. Among 867 subjects, 233 subjects (26.9%) were judged to be frailty group, and 634 subjects (73.1%) non-frailty group. We compared period to the new certification of long-term care insurance (LTCI), accumulated medical and long-term care expenditures adjusted for age and gender between the two groups during the follow-up period. Cox proportional hazard models were used to examine the association between baseline frailty and the new certification of LTCI. The relative hazard ratio (HR) was higher in frailty group than non-frailty group (HR=3.51, 95% CI：1.30-9.45, P=.013). The adjusted mean accumulated medical and long-term care expenditures per capita during the follow-up were significantly (P=.002) larger for those in the frailty group (629,699 yen), while those in the non-frailty group were 450,995 yen. We confirmed strong economic impact of frailty in the elderly aged 75 or over in Japan.

scholarly journals P181 Long-term improvement in axial spondyloarthritis clinical outcomes following 2-weeks of intensive education and rehabilitation: results from the Bath residential rehabilitation programme

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rosie Barnett ◽  
Anita McGrogan ◽  
Matthew Young ◽  
Charlotte Cavill ◽  
Mandy Freeth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Rehabilitation Programme ◽  
Spinal Mobility ◽  
The Impact

Abstract Background/Aims  Axial spondyloarthritis (axSpA) is a chronic rheumatic condition, characterised by inflammatory back pain - often associated with impaired function and mobility, sleep disturbance, fatigue, and reduced quality of life. Despite the vast advances in pharmacological treatments for axSpA over the last few decades, physical activity and rehabilitation remain vital for effective disease management. At the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD), the 2-week inpatient axSpA rehabilitation programme has been integral to axSpA care since the 1970’s. Prior research has demonstrated significant short-term improvements in spinal mobility (BASMI), function (BASFI) and disease activity (BASDAI) following course attendance. However, the long-term outcomes are yet to be evaluated in this unique cohort. Methods  Since the early 1990’s, clinical measures of spinal mobility, function and disease activity have been routinely collected at the RNHRD at all clinical appointments through administration of the BASMI, BASFI and BASDAI, respectively. Dates of attending the axSpA course and standard clinical and treatment follow-up data were also collected. Multiple linear regression models were used to investigate the impact of course attendance on final reported BASMI, BASDAI and BASFI scores (final score=most recent). Length of follow-up was defined as time between first and last recorded BASMI. Results  Of the 203 patients within the Bath SPARC200 cohort, 77.8% (158/203) had attended at least one rehabilitation course throughout follow-up. 70.0% (140/203) of patients were male. The mean duration of follow-up was 13.5 years (range 0-35 years); 28.1% (57/203) of individuals with 20+ years of follow-up. Course attendance (yes versus no) significantly reduced final BASMI score by 0.84 (p = 0.001, 95%CI -1.31 to -0.37) and final BASDAI score by 0.74 (p = 0.018, 95%CI -1.34 to -0.13). Although course attendance reduced final BASFI by 0.45 (95%CI -1.17 to 0.28), this relationship did not reach significance (p = 0.225). Whilst minimally clinically important difference (MCID) is, to our knowledge, yet to be defined for BASMI, MCIDs were achieved long-term for both BASDAI and BASFI - defined by van der Heijde and colleagues in 2016 as 0.7 and 0.4 for BASDAI and BASFI, respectively. Conclusion  These results provide novel evidence to support the integral role of education, physical activity and rehabilitation in the management of axSpA. Future work should investigate additional outcomes of critical importance to patients and clinicians, such as fatigue, quality of life and work productivity. Furthermore, a greater understanding of the factors that confound these outcomes may provide insights into those patients who may most benefit from attending a 2-week rehabilitation course. In addition to facilitating identification of those patients who may require additional clinical support. Disclosure  R. Barnett: None. A. McGrogan: None. M. Young: None. C. Cavill: None. M. Freeth: None. R. Sengupta: Honoraria; Biogen, Celgene, AbbVie, Novartis, MSD. Grants/research support; Novartis, UCB.

Sign in / Sign up

Export Citation Format

Share Document