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1.
Curr Opin Oncol ; 36(4): 211-222, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38842014

ABSTRACT

PURPOSE OF REVIEW: Symptom burden of cancer diagnosis and treatment has led adolescents and young adult cancer patients (AYAC) and survivors to seek different self-management strategies including integrative oncology (IO) modalities. IO holds great promise to improve survivorship issues in adolescents and young adult (AYA) cancer survivors. This review aims to encompass the current evidence of IO modalities and to analyze the efficacy of IO for managing survivorship issues among AYA cancer patients and survivors. RECENT FINDINGS: Nineteen randomized controlled trials included in this review evaluated mind and body modalities including both physical and psychological (74%) and psychological only (26%) modalities. Most assessed IO modalities were physical activity (PA) (37%) and structured exercise (10%). Most effective IO modalities found were PA, massage, mindfulness-based stress reduction (MBSR) and light therapy for treating AYA symptom burden. The Cochrane risk of bias (RoB-2) concluded 21% studies had high risk, 58% possessed some concerns and 21% had low risk. SUMMARY: Although evidence has shown that a number of IO modalities may improve survivorship among AYA cancer survivors, more rigorous study designs are needed in order for these modalities to be routinely recommended for use in clinical practice.


Subject(s)
Cancer Survivors , Integrative Oncology , Neoplasms , Adolescent , Humans , Young Adult , Cancer Survivors/psychology , Exercise , Integrative Oncology/methods , Neoplasms/psychology , Neoplasms/therapy , Randomized Controlled Trials as Topic , Survivorship
2.
Clin J Oncol Nurs ; 28(3): 318-322, 2024 May 17.
Article in English | MEDLINE | ID: mdl-38830250

ABSTRACT

During cancer treatment, oncology nurses emphasize patient and family education about coping strategies to manage adverse events such as gastrointestinal effects and fatigue. However, information about how to return to health.


Subject(s)
Neoplasms , Patient Education as Topic , Humans , Neoplasms/nursing , Neoplasms/psychology , Patient Education as Topic/methods , Cancer Survivors/psychology , Female , Healthy Lifestyle , Oncology Nursing/education , Adaptation, Psychological , Male , Middle Aged , Survivorship , Adult
3.
Am Soc Clin Oncol Educ Book ; 44(3): e433298, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38768420

ABSTRACT

People with advanced lung cancer represent a distinct group whose needs remain understudied, especially compared with people diagnosed with limited-stage disease. Fortunately, novel treatments such as tyrosine kinase inhibitors and immune checkpoint inhibitors are leading to significant advances in prognosis and survival, even among those with advanced disease at the time of diagnosis. However, there are known gaps in symptom management, psychosocial and nutritional support, complex care coordination, health behavior coaching, and health care delivery efforts among patients living with advanced lung cancer. Many of these patients would benefit from survivorship and palliative care approaches. In particular, survivorship care may include health care maintenance, treatment of immune-related adverse events and late- or long-term effects, frailty assessment and rehabilitation, and care coordination. Palliative care may be best suited to discuss ongoing symptom management, advanced care planning, and end-of-life considerations, as well as psychosocial well-being. To this end, we share a review of the current status of the palliative and survivorship care infrastructure for patients with advanced lung cancer and provide suggestions across the care continuum for this diverse group of patients and families.


Subject(s)
Lung Neoplasms , Palliative Care , Survivorship , Humans , Lung Neoplasms/therapy , Cancer Survivors , Neoplasm Staging , Quality of Life
4.
Neurosurg Focus ; 56(5): E12, 2024 May.
Article in English | MEDLINE | ID: mdl-38691854

ABSTRACT

OBJECTIVE: Chordomas are rare malignant bone tumors whose location in the skull base or spine, invasive surgical treatment, and accompanying adjuvant radiotherapy may all lead patients to experience poor quality of life (QOL). Limited research has been conducted on specific demographic and clinical factors associated with decreased QOL in chordoma survivors. Thus, the aim of the present study was to investigate several potential variables and their impact on specific QOL domains in these patients as well the frequencies of specific QOL challenges within these domains. METHODS: The Chordoma Foundation (CF) Survivorship Survey was electronically distributed to chordoma survivors subscribed to the CF Chordoma Connections forum. Survey questions assessed QOL in three domains: physical, emotional/cognitive, and social. The degree of impairment was assessed by grouping the participants into high- and low-challenge groups designated by having ≥ 5 or < 5 symptoms or challenges within a given QOL domain. Bivariate analysis of demographic and clinical characteristics between these groups was conducted using Fisher's exact test and the Mann-Whitney U-test. RESULTS: A total of 665 chordoma survivors at least partially completed the survey. On bivariate analysis, female sex was significantly associated with increased odds of significant emotional (p = 0.001) and social (p = 0.019) QOL burden. Younger survivors (age < 65 years) were significantly more likely to experience significant physical (p < 0.0001), emotional (p < 0.0001), and social (p < 0.0001) QOL burden. Skull base chordoma survivors had significantly higher emotional/cognitive QOL burden than spinal chordoma survivors (p = 0.022), while the converse was true for social QOL challenges (p = 0.0048). Survivors currently in treatment were significantly more likely to experience significant physical QOL challenges compared with survivors who completed their treatment > 10 years ago (p = 0.0074). Fear of cancer recurrence (FCR) was the most commonly reported emotional/cognitive QOL challenge (49.6%). Only 41% of the participants reported having their needs met for their physical QOL challenges as well as 25% for emotional/cognitive and 18% for social. CONCLUSIONS: The authors' findings suggest that younger survivors, female survivors, and survivors currently undergoing treatment for chordoma are at high risk for adverse QOL outcomes. Additionally, although nearly half of the participants reported a FCR, very few reported having adequate emotional/cognitive care. These findings may be useful in identifying specific groups of chordoma survivors vulnerable to QOL challenges and bring to light the need to expand care to meet the QOL needs for these patients.


Subject(s)
Chordoma , Quality of Life , Humans , Chordoma/psychology , Chordoma/surgery , Quality of Life/psychology , Female , Male , Middle Aged , Adult , Aged , Cancer Survivors/psychology , Survivorship , Surveys and Questionnaires , Young Adult , Adolescent , Aged, 80 and over
6.
JCO Glob Oncol ; 10: e2300418, 2024 May.
Article in English | MEDLINE | ID: mdl-38781550

ABSTRACT

PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.


Subject(s)
Cancer Survivors , Developing Countries , Humans , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Cross-Sectional Studies , Surveys and Questionnaires , Neoplasms/psychology , Neoplasms/therapy , Developed Countries , Male , Health Services Accessibility/statistics & numerical data , Female , Psycho-Oncology , Survivorship
7.
Am Soc Clin Oncol Educ Book ; 44(3): e432564, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38815189

ABSTRACT

Addressing the challenges of survivorship necessitates a comprehensive, patient-centered approach, focusing on mitigating risk through lifestyle modification, identifying distant recurrence, and optimization of breast imaging. This article will discuss the current and emerging clinical strategies for the survivorship period, advocating a multidisciplinary and comprehensive approach. In this manner, early-stage breast cancer survivors are empowered to navigate their journey with enhanced knowledge, facilitating a transition to life beyond cancer.


Subject(s)
Breast Neoplasms , Cancer Survivors , Survivorship , Humans , Female , Neoplasm Staging , Practice Guidelines as Topic , Evidence-Based Medicine
8.
Support Care Cancer ; 32(6): 397, 2024 May 31.
Article in English | MEDLINE | ID: mdl-38819504

ABSTRACT

PURPOSE: This study aimed to develop a patient-centered survivorship care plan (SCP) for US military Veteran bladder cancer (BC) survivors in accordance with the National Academy of Medicine recommendation that survivors receive an SCP at treatment completion. BC, which differentially impacts older men, is a costly and highly recurrent cancer associated with invasive procedures and long-term surveillance. Veteran BC survivors may face challenges navigating the patient-to-survivor transition due to their age and comorbidities. METHODS: We conducted 20 one-on-one qualitative interviews and 2 focus groups with Veteran BC survivors to understand their preferences for information and support to inform SCP development. Data were analyzed using rapid analysis. RESULTS: Participants voiced concerns about BC's impact on their psychosocial functioning and quality of life. They suggested information on BC recurrences, recommended surveillance schedules, long-term side effects and healthy living, and how and when to seek help if a medical problem arises should be included on the SCP to help manage expectations and access key resources during survivorship. Although participants had varying needs, many recommended including information on supportive resources (e.g., support groups, peer support programs) to manage cancer-related anxiety. Participants also suggested including Veteran-centered information (e.g., Veterans' BC risk factors). CONCLUSION: We developed an SCP to help Veteran BC survivors navigate the transition from patient to survivor. Adapting an SCP to address specific needs of the Veteran population was an important step in supporting Veteran BC survivors. Future research should evaluate the potential effectiveness of this SCP at improving Veterans' health outcomes and healthcare experiences.


Subject(s)
Cancer Survivors , Focus Groups , Patient-Centered Care , Qualitative Research , Survivorship , Urinary Bladder Neoplasms , Veterans , Humans , Urinary Bladder Neoplasms/therapy , Urinary Bladder Neoplasms/psychology , Male , Aged , Cancer Survivors/psychology , Middle Aged , Patient-Centered Care/organization & administration , Veterans/psychology , Patient Care Planning/organization & administration , Female , Quality of Life , Aged, 80 and over , Interviews as Topic , United States
9.
BMJ Open ; 14(5): e080310, 2024 May 22.
Article in English | MEDLINE | ID: mdl-38777593

ABSTRACT

OBJECTIVES: Androgen deprivation therapy (ADT), a common treatment for prostate cancer, has debilitating impacts on physical and psychological quality of life. While some interventions focus on managing the physical side effects of ADT, there is a paucity of interventions that also address psychosocial and educational needs. The objective of this systematic review was to identify psychological and educational survivorship interventions targeting health-related quality of life (HRQoL) outcomes in men on ADT. DESIGN: A systematic review of randomised controlled trials. DATA SOURCES: Web of Science, Cochrane, EBSCO Host, PubMed, SCOPUS from inception (1984) to 28 January 2023. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Psychological and/or educational survivorship interventions targeting HRQoL outcomes for men on ADT; minimum 80% of participants on ADT; used a validated HRQoL outcome measure; published in English in a peer-reviewed journal. DATA EXTRACTION AND SYNTHESIS: Data extraction using pre-specified study criteria was conducted. Heterogeneity of eligible studies precluded a meta-analysis. RESULTS: A total of 3381 publications were identified with eight meeting the criteria. Interventions were either psychological with a cognitive behavioural approach (n=4), or educational with (n=2) or without (n=2) psychoeducational components.Two studies reported a statistically significant improvement using a specific HRQoL measure. Most studies were not adequately powered and/or included small sample sizes limiting the conclusions that can be drawn on effectiveness. The most effective interventions were (i) individually based, (ii) educational with a psychoeducational component, (iii) supplemented with information packages and/or homework and (iv) included personalised needs assessments. CONCLUSION: There is a paucity of literature reporting psychological and educational survivorship interventions targeting HRQoL outcomes for men on ADT. What is urgently needed are person-centred survivorship interventions that are flexible enough to identify and address individual needs, taking into account the impact ADT has on both physical and psychological quality of life. PROSPERO REGISTRATION NUMBER: CRD4202230809.


Subject(s)
Androgen Antagonists , Prostatic Neoplasms , Quality of Life , Humans , Male , Prostatic Neoplasms/psychology , Prostatic Neoplasms/drug therapy , Prostatic Neoplasms/therapy , Androgen Antagonists/therapeutic use , Androgen Antagonists/adverse effects , Patient Education as Topic/methods , Cancer Survivors/psychology , Survivorship , Randomized Controlled Trials as Topic
10.
Yonsei Med J ; 65(6): 315-323, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38804025

ABSTRACT

Exercise has long been recognized as an important component of treatment for various diseases. However, the benefits and risks of exercise interventions must be carefully evaluated to ensure the former outweighs the latter. As cancer patients undergo diverse treatment modalities with distinct objectives, a systematic approach partitioning the cancer journey into distinct phases is necessary to inform tailored exercise prescriptions. This narrative review summarizes exercise benefits and mechanisms for cancer patients and survivors across four distinct survivorship periods-before surgery, after surgery and before adjuvant treatment, during nonsurgical treatment (adjuvant and neoadjuvant), and during extended survival. In summary, exercise reduces the risks of complications and declines in physical functioning while improving fatigue, quality of life, and the ability to manage treatment effects. Although additional research is warranted, existing evidence is sufficient to integrate exercise into clinical oncology practice and cancer survivorship programs.


Subject(s)
Cancer Survivors , Exercise , Neoplasms , Quality of Life , Humans , Neoplasms/therapy , Exercise/physiology , Survivorship , Exercise Therapy/methods , Fatigue
11.
Med Care ; 62(7): 473-480, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38775667

ABSTRACT

BACKGROUND: Rural cancer survivors may face greater challenges receiving survivorship care than urban cancer survivors. PURPOSE: To test for rural versus urban inequities and identify other correlates of discussions about cancer survivorship care with healthcare professionals. METHODS: Data are from the 2017 Medical Expenditure Panel Survey (MEPS), which included a cancer survivorship supplement. Adult survivors were asked if they discussed with a healthcare professional 5 components of survivorship care: need for follow-up services, lifestyle/health recommendations, emotional/social needs, long-term side effects, and a summary of treatments received. The Behavioral Model of Health Services guided the inclusion of predisposing, enabling, and need factors in ordered logit regression models of each survivorship care variable. RESULTS: A significantly lower proportion of rural than urban survivors (42% rural, 52% urban) discussed in detail the treatments they received, but this difference did not persist in the multivariable model. Although 69% of rural and 70% of urban ssurvivors discussed in detail their follow-up care needs, less than 50% of both rural and urban survivors discussed in detail other dimensions of survivorship care. Non-Hispanic Black race/ethnicity and time since treatment were associated with lower odds of discussing 3 or more dimensions of survivorship care. CONCLUSIONS: This study found only a single rural/urban difference in discussions about survivorship care. With the exception of discussions about the need for follow-up care, rates of discussing in detail other dimensions of survivorship care were low among rural and urban survivors alike.


Subject(s)
Cancer Survivors , Healthcare Disparities , Rural Population , Survivorship , Urban Population , Humans , Female , Male , Rural Population/statistics & numerical data , Middle Aged , Cancer Survivors/statistics & numerical data , Urban Population/statistics & numerical data , Adult , Aged , Healthcare Disparities/statistics & numerical data , Neoplasms/therapy , Neoplasms/mortality , United States , Health Services Needs and Demand/statistics & numerical data
12.
J Med Internet Res ; 26: e49910, 2024 05 02.
Article in English | MEDLINE | ID: mdl-38696248

ABSTRACT

BACKGROUND: To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care centers representing 6 European countries and 3 distinct health system scenarios: (1) national electronic health information systems (EHISs) in Austria and Lithuania, (2) regional or local EHISs in Italy and Spain, and (3) cancer registries or hospital-based EHISs in Belgium and Germany. OBJECTIVE: We aimed to identify and describe barriers and facilitators for SurPass (version 2.0) implementation concerning semiautomation of data input, interoperability, data protection, privacy, and cybersecurity. METHODS: IT specialists from the 6 LTFU care centers participated in a semistructured digital survey focusing on IT-related barriers and facilitators to SurPass (version 2.0) implementation. We used the fit-viability model to assess the compatibility and feasibility of integrating SurPass into existing EHISs. RESULTS: In total, 13/20 (65%) invited IT specialists participated. The main barriers and facilitators in all 3 health system scenarios related to semiautomated data input and interoperability included unaligned EHIS infrastructure and the use of interoperability frameworks and international coding systems. The main barriers and facilitators related to data protection or privacy and cybersecurity included pseudonymization of personal health data and data retention. According to the fit-viability model, the first health system scenario provides the best fit for SurPass implementation, followed by the second and third scenarios. CONCLUSIONS: This study provides essential insights into the information and IT-related influencing factors that need to be considered when implementing the SurPass (version 2.0) in clinical practice. We recommend the adoption of Health Level Seven Fast Healthcare Interoperability Resources and data security measures such as encryption, pseudonymization, and multifactor authentication to protect personal health data where applicable. In sum, this study offers practical insights into integrating digital health solutions into existing EHISs.


Subject(s)
Telemedicine , Humans , Telemedicine/methods , Europe , Surveys and Questionnaires , Electronic Health Records , Cancer Survivors , Computer Security , Survivorship
13.
Clin Orthop Surg ; 16(2): 201-209, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38562642

ABSTRACT

Background: Proximal-distal mismatch has emerged as a prominent concern in Dorr type A femoral morphology, prompting the exploration of short stems as promising alternatives to conventional stems. This study aimed to evaluate clinical and radiographic outcomes of total hip arthroplasty (THA) using short femoral stems in Dorr type A proximal femoral morphology with a minimum follow-up of 5 years. Methods: Patients with short femoral stems in Dorr type A between 2011 and 2017 were included. Patients with the Short Modular Femoral (SMF) stem and Metha stem were recruited and patients with a shortened tapered stem (Tri-Lock BPS) were matched by propensity score matching based on age, sex, body mass index, calcar to canal ratio, and diagnosis. Patient-reported outcomes and the presence of thigh pain were assessed at 5 years postoperatively. Revision rate, complication rate, and radiographic outcomes were also assessed and compared. Results: Twenty-two cases (81%) in the SMF stem and 43 cases (65%) in the Metha stem had more than 5 years of follow-up data available. The SMF stem showed a higher failure rate than the other 2 groups, with 18% requiring revision surgery in the SMF stem compared to 4.6% in the Metha stem, and 2.3% in the Tri-Lock BPS. The SMF stem showed considerable complications such as stem position change and lateral cortical hypertrophy with inferior clinical outcomes than the other 2 stem groups. When the Metha stem and the Tri-Lock BPS groups were compared, more intraoperative fractures were observed in the Metha stem, whereas stress shielding and anterior thigh pain were significantly more prevalent in the Tri-Lock BPS. Conclusions: The SMF stem might be less reliable than previously reported, showing a high failure rate and increased radiologic complications. Thus, its use for THA in Dorr Type A femurs needs caution. On the other hand, the Metha stem showed comparable outcomes to the shortened tapered Tri-Lock BPS.


Subject(s)
Arthroplasty, Replacement, Hip , Hip Prosthesis , Humans , Survivorship , Prosthesis Design , Femur/diagnostic imaging , Femur/surgery , Reoperation , Pain/surgery , Retrospective Studies , Treatment Outcome , Follow-Up Studies
14.
BMC Musculoskelet Disord ; 25(1): 283, 2024 Apr 12.
Article in English | MEDLINE | ID: mdl-38609884

ABSTRACT

BACKGROUND: This study aimed to report the long-term survival of fixed-bearing medial unicompartmental knee arthroplasty (UKA) with a mean of 14-year follow-up, and to determine possible risk factors of failure. METHODS: We retrospectively evaluated 337 fixed-bearing medial UKAs implanted between 2003 and 2014. Demographic and radiographic parameters were measured, including pre-operative and post-operative anatomical femorotibial angle (aFTA), posterior tibial slope (PTS), and anatomical medial proximal tibial angle (aMPTA). Multivariate logistic regression analysis was applied to figure out risk factors. RESULTS: The mean follow-up time was 14.0 years. There were 32 failures categorized into implant loosening (n = 11), osteoarthritis progression (n = 7), insert wear (n = 7), infection (n = 4), and periprosthetic fracture (n = 3). Cumulative survival was 91.6% at 10 years and 90.0% at 15 years. No statistically significant parameters were found between the overall survival and failure groups. Age and hypertension were significant factors of implant loosening with odds ratio (OR) 0.909 (p = 0.02) and 0.179 (p = 0.04) respectively. In the insert wear group, post-operative aFTA and correction of PTS showed significance with OR 0.363 (p = 0.02) and 0.415 (p = 0.03) respectively. Post-operative aMPTA was a significant factor of periprosthetic fracture with OR 0.680 (p < 0.05). CONCLUSIONS: The fixed-bearing medial UKA provides successful long-term survivorship. Tibial component loosening is the major cause of failure. Older age and hypertension were factors with decreased risk of implant loosening.


Subject(s)
Arthroplasty, Replacement, Knee , Hypertension , Periprosthetic Fractures , Humans , Survivorship , Arthroplasty, Replacement, Knee/adverse effects , Follow-Up Studies , Retrospective Studies
15.
J Pediatr Hematol Oncol ; 46(4): 211-215, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38573000

ABSTRACT

Diffuse intrinsic pontine gliomas are lethal tumors with a prognosis generally less than 1 year. Few cases of survivors of 5 years or more have been reported. This case report highlights the journey of a 9.5-year survivor who underwent 3 rounds of focal radiotherapy; she experienced 6 years of progression-free survival following the first round but ultimately succumbed to her disease. An autopsy revealed a favorable IDH1 mutation and the absence of H3K27M. This case reiterates the importance of extensive molecular analyses in diffuse intrinsic pontine gliomas and explores the potential benefit of re-irradiation in patients with positive responses and long periods of remission.


Subject(s)
Brain Stem Neoplasms , Diffuse Intrinsic Pontine Glioma , Humans , Female , Brain Stem Neoplasms/pathology , Brain Stem Neoplasms/therapy , Brain Stem Neoplasms/mortality , Diffuse Intrinsic Pontine Glioma/pathology , Diffuse Intrinsic Pontine Glioma/therapy , Diffuse Intrinsic Pontine Glioma/genetics , Child , Survivorship , Cancer Survivors , Fatal Outcome , Isocitrate Dehydrogenase/genetics , Prognosis , Mutation
16.
J Pediatr Hematol Oncol Nurs ; 41(3): 172-187, 2024.
Article in English | MEDLINE | ID: mdl-38656765

ABSTRACT

Background: Transitioning from active cancer treatment to survivorship represents a vulnerable yet underresearched phase for adolescents and their families. Knowledge of their support needs, the challenges they experience, and how they manage them are useful to inform tailored follow-up care. Thus, we aimed to explore their transition experiences. Method: We interviewed 15 adolescents (12-19 years) who had transitioned off of treatment 1 to 47 months prior at Oslo University Hospital's Department of Paediatric Haematology and Oncology and their biological parents (n = 16). The interviews were analyzed using inductive, reflexive thematic analysis inspired by Braun and Clarke. NVivo-12 was used for data management. Results: Four main themes were identified: (a) consequences of cancer beyond transition, (b) transition back to normalcy, (c) survivorship competence, and (d) changes in roles and relationships. The families described happiness and relief but also said that the lingering effects of cancer treatment had a profound impact on day-to-day living. The adolescents expressed closeness with and dependency on their parents, and they perceived family and friends as essential for social readjustment. Discussion: Although adolescent survivors and their parents described a wide variety of strategies for returning to "normalcy," their perspectives also illustrate ongoing psychosocial and educational support needs that changed over time. Our findings indicate a need for improved preparation for and support through the transition. Nurses are well positioned to provide continuous and structured transition support tailored to the needs of the individual survivors and their families.


Subject(s)
Cancer Survivors , Parents , Qualitative Research , Humans , Adolescent , Cancer Survivors/psychology , Female , Male , Parents/psychology , Child , Neoplasms/therapy , Neoplasms/psychology , Young Adult , Adult , Survivorship , Adaptation, Psychological
17.
Cancer Med ; 13(9): e7219, 2024 May.
Article in English | MEDLINE | ID: mdl-38686635

ABSTRACT

INTRODUCTION: Existing approaches in cancer survivorship care delivery have proven to be insufficient to engage primary care. This study aimed to identify stakeholder-informed priorities to improve primary care engagement in breast cancer survivorship care. METHODS: Experts in U.S. cancer survivorship care delivery were invited to participate in a 4-round online Delphi panel to identify and evaluate priorities for defining and fostering primary care's engagement in breast cancer survivorship. Panelists were asked to identify and then assess (ratings of 1-9) the importance and feasibility of priority items to support primary care engagement in survivorship. Panelists were asked to review the group results and reevaluate the importance and feasibility of each item, aiming to reach consensus. RESULTS: Respondent panelists (n = 23, response rate 57.5%) identified 31 priority items to support survivorship care. Panelists consistently rated three items most important (scored 9) but with uncertain feasibility (scored 5-6). These items emphasized the need to foster connections and improve communication between primary care and oncology. Panelists reached consensus on four items evaluated as important and feasible: (1) educating patients on survivorship, (2) enabling screening reminders and monitoring alerts in the electronic medical record, (3) identifying patient resources for clinicians to recommend, and (4) distributing accessible reference guides of common breast cancer drugs. CONCLUSION: Role clarity and communication between oncology and primary care were rated as most important; however, uncertainty about feasibility remains. These findings indicate that cross-disciplinary capacity building to address feasibility issues may be needed to make the most important priority items actionable in primary care.


Subject(s)
Breast Neoplasms , Cancer Survivors , Delphi Technique , Primary Health Care , Humans , Breast Neoplasms/therapy , Breast Neoplasms/mortality , Female , Primary Health Care/standards , Primary Health Care/methods , Survivorship , Consensus , Middle Aged
18.
Fam Med Community Health ; 12(Suppl 2)2024 Apr 04.
Article in English | MEDLINE | ID: mdl-38575353

ABSTRACT

BACKGROUND: The proportion of childhood cancer survivors (CCS) in low/middle-income countries (LMICs) is rising. CCS often develop several physical and psycho-social long-term adverse effects, with unique healthcare needs. Primary healthcare providers (primary care physicians (PCPs)), especially in LMICs, are often not equipped to handle survivorship care. This study aimed to assess knowledge, and attitude among trainee healthcare providers concerning major issues of paediatric survivorship care. METHODS: A multi-centre, cross-sectional, questionnaire-based study was conducted among nursing and medical undergraduate students, and postgraduate medical residents across three tertiary-care teaching hospitals in India-All India Institute of Medical Sciences, New Delhi; Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry; and Maulana Azad Medical College, New Delhi. A questionnaire with total of 24 questions (14 knowledge-based and 10 attitude-based) was finalised after validation by expert review and piloting. The major domains covered in the questionnaire included knowledge and attitude regarding long-term adverse effects and psychosocial, employment-related issues faced by the survivors. It was administered to the study participants electronically. The knowledge-based questions had true/false responses (scored as 0 or 1 if incorrect or correct, respectively). Attitude-based questions were scored as 5-point Likert scale. RESULTS: Total 898 responses were collected (median age: 21 years, 64% (576/898) female). Among the respondents, 44% were undergraduate medical students, 42% were nursing students and 14% were postgraduate medical residents. The mean (SD) of knowledge score was 8.72 (2.04) (out of 14). On multivariable analysis, only discipline of training predicted knowledge scores regarding survivorship care. Postgraduate medical residents (9.08) as well as undergraduate medical students (8.85), had significantly higher mean knowledge scores than nursing students (8.47) (p=0.004).Two questions were answered incorrectly by the majority; children and siblings of CCS need additional genetic screening (79% incorrectly answered true), and CCS face intimacy issues in relation to normal sexual functioning (59% incorrectly answered false).Nearly half (48%) of respondents believed that their knowledge of cancer survivorship issues was inadequate. Majority of respondents (84%) suggested that oncologists should handle long-term survivorship care rather than PCPs. CONCLUSION: Trainee healthcare providers in India reported inadequate knowledge regarding survivorship care. Improving awareness by incorporating survivorship in teaching curriculum is imperative to equip future PCPs to provide survivorship care across the country.


Subject(s)
Cancer Survivors , Neoplasms , Adult , Female , Humans , Young Adult , Cancer Survivors/psychology , Cross-Sectional Studies , Delivery of Health Care , Neoplasms/psychology , Survivorship
19.
Support Care Cancer ; 32(5): 313, 2024 Apr 29.
Article in English | MEDLINE | ID: mdl-38679639

ABSTRACT

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.


Subject(s)
Cancer Survivors , Neoplasms , Palliative Care , Survivorship , Humans , Delphi Technique , Neoplasm Metastasis , Neoplasms/therapy , Palliative Care/standards , Palliative Care/methods , Patient-Centered Care/standards , Patient-Centered Care/organization & administration , Practice Guidelines as Topic , Quality of Health Care/standards
20.
JMIR Res Protoc ; 13: e53307, 2024 Apr 23.
Article in English | MEDLINE | ID: mdl-38652520

ABSTRACT

BACKGROUND: Cancer is a life-threatening, stressful event, particularly for young adults due to delays and disruptions in their developmental transitions. Cancer treatment can also cause adverse long-term effects, chronic conditions, psychological issues, and decreased quality of life (QoL) among young adults. Despite numerous health benefits of health behaviors (eg, physical activity, healthy eating, no smoking, no alcohol use, and quality sleep), young adult cancer survivors report poor health behavior profiles. Determining the associations of stress (either cancer-specific or day-to-day stress), health behaviors, and QoL as young adult survivors transition to survivorship is key to understanding and enhancing these survivors' health. It is also crucial to note that the effects of stress on health behaviors and QoL may manifest on a shorter time scale (eg, daily within-person level). Moreover, given that stress spills over into romantic relationships, it is important to identify the role of spouses or partners (hereafter partners) in these survivors' health behaviors and QoL. OBJECTIVE: This study aims to investigate associations between stress, health behaviors, and QoL at both within- and between-person levels during the transition to survivorship in young adult cancer survivors and their partners, to identify the extent to which young adult survivors' and their partners' stress facilitates or hinders their own and each other's health behaviors and QoL. METHODS: We aim to enroll 150 young adults (aged 25-39 years at the time of cancer diagnosis) who have recently completed cancer treatment, along with their partners. We will conduct a prospective longitudinal study using a measurement burst design. Participants (ie, survivors and their partners) will complete a daily web-based survey for 7 consecutive days (a "burst") 9 times over 2 years, with the bursts spaced 3 months apart. Participants will self-report their stress, health behaviors, and QoL. Additionally, participants will be asked to wear an accelerometer to assess their physical activity and sleep during the burst period. Finally, dietary intake (24-hour diet recalls) will be assessed during each burst via telephone by research staff. RESULTS: Participant enrollment began in January 2022. Recruitment and data collection are expected to conclude by December 2024 and December 2026, respectively. CONCLUSIONS: To the best of our knowledge, this will be the first study that determines the interdependence of health behaviors and QoL of young adult cancer survivors and their partners at both within- and between-person levels. This study is unique in its focus on the transition to cancer survivorship and its use of a measurement burst design. Results will guide the creation of a developmentally appropriate dyadic psychosocial or behavioral intervention that improves both young adult survivors' and their partners' health behaviors and QoL and potentially their physical health. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/53307.


Subject(s)
Cancer Survivors , Health Behavior , Quality of Life , Stress, Psychological , Adult , Female , Humans , Male , Cancer Survivors/psychology , Quality of Life/psychology , Spouses/psychology , Stress, Psychological/psychology , Surveys and Questionnaires , Survivorship , Research Design
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