Childhood cancer survivors’ primary care and follow-up experiences (original) (raw)
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Journal of cancer education : the official journal of the American Association for Cancer Education, 2018
Despite support for the provision of a survivorship care plan (SCP) to every cancer survivor, there is a lack of understanding of the needs and preferences of key stakeholders. We examined perspectives of a novel personalized SCP for childhood cancer survivors (CCS), their family, and family physicians (FP). We conducted semi-structured telephone interviews with a purposefully selected sample of CCS, parents/guardians, and FPs. Data included responses to stakeholder cancer care information needs, concerns with or gaps in communication, the perceived role of the FP in the long-term management of CCS care, utility of the SCP, preferred format, and suggestions for improvement. A deductive content analysis was conducted. Twenty-four participants including 8 CCS, 10 parents/guardians, and 6 FPs completed an interview. Four main and several sub-categories emerged. Core categories were coded as (1) informative reference, (2) coordination of follow-up, (3) barriers to follow-up care, and (4...
The oncologist, 2018
Primary care physicians (PCPs) are well placed to provide holistic care to survivors of childhood cancer and may relieve growing pressures on specialist-led follow-up. We evaluated PCPs' role and confidence in providing follow-up care to survivors of childhood cancer. In Stage 1, survivors and parents (of young survivors) from 11 Australian and New Zealand hospitals completed interviews about their PCPs' role in their follow-up. Participants nominated their PCP for an interview for Stage 2. In Stage 2, PCPs completed interviews about their confidence and preparedness in delivering childhood cancer survivorship care. Stage 1: One hundred twenty survivors (36% male, mean age: 25.6 years) and parents of young survivors (58% male survivors, survivors' mean age: 12.7 years) completed interviews. Few survivors (23%) and parents (10%) visited their PCP for cancer-related care and reported similar reasons for not seeking PCP-led follow-up including low confidence in PCPs (48%), ...
The integration of primary care and childhood cancer survivorship care: a scoping review
Journal of Cancer Survivorship, 2022
Purpose This scoping review describes existing care models that integrate primary care and childhood cancer survivorship care, examines the effectiveness of these models, and characterizes barriers and facilitators to their integration. Methods A systematic search (PubMed®, CINAHL®, Embase®) was conducted to identify citations which were evaluated against inclusion criteria using the PICOTTS framework. The PRISMA-ScR extension for scoping reviews was used to report review findings (protocol https:// osf. io/ 92xbg). Results Twenty-three studies were included. Three care models integrating primary care and childhood cancer survivorship care were identified: consultative shared care in a primary care setting (N = 3); longitudinal shared care (N = 2); and PCPled care employing a survivorship care plan (N = 5). While many described risk-adapted care, few used risk stratification approaches to inform care. Measures of model effectiveness varied, with discrepant findings regarding late effects detection in PCP-led approaches. The most frequently cited barriers and facilitators reflected provider-and system-level factors (PCP knowledge/experience identified as greatest barrier (N = 11); clinical information from oncologist identified as greatest facilitator (N = 9)). Conclusions Identified models depended on PCP knowledge and healthcare system coordination, and studies suggested the need for strong oncologic involvement in follow-up care. Improved training for PCPs and the coordinated transfer of clinical information could facilitate their involvement in such care. Overall, standardized measures of effectiveness are needed to deliver optimal childhood cancer survivorship care. Implications for Cancer Survivors The literature revealed three care models defined by SCP use, provider involvement, and continuity of care, with several studies recommending oncologic involvement in follow-up care for high-risk survivors.
Cancer Management and Research
The potential physical or psychosocial factors that play a role in the progression of childhood cancer survivors into adulthood are essential in the identification of an effective patient-centred approach to therapy. Despite the presence of guidelines published by the Children's Oncology Group, knowledge of the long-term health sequelae for the care of survivors is sub-optimal. Here, the pertinent clinical issues that may affect survivors of childhood cancer are outlined for primary care providers (PCPs). Methods: This literature search identified articles using PubMed, EMBASE Ovid, and the Cochrane Library to determine high-quality, multicenter randomized controlled trials, systematic reviews, meta-analyses, and practice guidelines from December 1998 to December 2018. The keywords of the search were primary care providers; childhood cancer survivors; long-term care and mental health. Guidelines and research using retrospective studies are used to compile evidence to address PCP's involvement and to describe the factors involved in the adult onset of psychological disorders in survivors of childhood cancer. A focus of this article is to use the literature that evaluated pediatric cancer survivors for at least five years post diagnosis and had received cancer treatment including chemotherapy, radiation, bone marrow transplant, or surgery. Additional research focused on primary care physicians addressing the care of childhood cancer survivors. Here, we aim to provide PCPs and physicians with a critical yet concise update on the recent advancements for this important healthcare topic. This paper presents an overview of previously published reviews and, as such, requires no ethics approval. Results: Childhood cancer survivors can develop symptoms of depression and suffer from low self-esteem from their diagnosis and treatment regimens. These symptoms can result in functional impairment. Child diagnosis also affects parental health, resulting in the experience of psychological, emotional and traumatic stress. The feeling of helplessness and guilt on parents leads to the potentiation of depression on the child survivor. Conclusions: Primary care providers, in collaboration with clinician specialists, must be vigilant in providing consistent long-term care. This approach will ensure clear constant communication to help address the challenges faced by the families and survivors as they progress through adulthood. Implications for cancer survivors: Encouraging primary care providers to become knowledgeable and comfortable in utilizing appropriate resources is achieved through consultation with oncology or psychiatric specialists or with online resources for safer management of childhood cancer survivors. The implications for this patient population would ultimately allow for a more patient-centred approach to therapy.
Child: Care, Health and Development, 2014
Background This qualitative, exploratory study examines the content of communication between healthcare providers (HCP) and childhood cancer patients (CCP) during a medical appointment to evaluate the extent to which cancer survivorship issues (medical and psychosocial) are discussed. Methods The content of the communication for 16 CCP ages 10-22 and their HCP were examined via audio recorded medical appointments occurring within 6 months of the end of active cancer treatment. The data were analysed using template analysis, a constructivist-interpretivist qualitative approach. Results HCP addressed more medically focused than psychosocially focused issues related to survivorship. Conclusions Most discussions of survivorship are medically focused, potentially leaving patients with little information about future psychosocial functioning. Recommendations for future research on enhancing discussions about psychosocial issues are presented. This research has the potential to inform future interventions to enhance patient-provider communication on survivorship issues. Over 14 000 children and adolescents are diagnosed with cancer yearly in the United States (Howlader et al. 2012). Approximately 83% achieve long-term remission (Siegel et al. 2012). With over 325 000 paediatric cancer survivors in the United States (Mariotto et al. 2009), attention to adjustment in survivorship is warranted. Although many childhood cancer patients (CCP) adjust well, functioning can be compromised by interruptions in development, family stressors and treatmentrelated distress (
The unmet needs of childhood cancer survivors in long‐term follow‐up care: A qualitative study
Psycho-Oncology, 2020
Objective Evidence suggests benefits of long-term follow-up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long-term survivorship. Methods Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis. Results Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services. Conclusions Our findings revealed a demand for integrating psychosocial support in long-term follow-up care and a strong need for personalized, centralized, and interdisciplinary long-term follow-up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence-based long-term follow-up care including adequate psychosocial support for all childhood cancer survivors.
Journal of Cancer Survivorship, 2011
Purpose To facilitate family doctor-driven follow-up for adult childhood cancer survivors, we developed a survivor care plan (SCP) for adult survivors and their family doctors. Methods The SCP was accessible for survivors and their family doctors on a secure website and as a printed booklet. It included data on diagnosis, treatment and potential risks as well as recommendations for follow-up. Childhood cancer survivors who were off-treatment ≥5 years, aged ≥18 years and not involved in a long-term follow-up program were eligible. They were advised to visit their family doctor. The endpoints were numbers of participants, adherence of family doctors to the guidelines and satisfaction ratings. Results The eligibility criteria were fulfilled by 108 survivors. Three family doctors and 15 survivors refused, 10 survivors were non-responders. Of the remaining 80 survivors, 73 survivors visited 72 family doctors. Sixtynine (96%) family doctors returned data of whom 60 (83%) fully adhered to the recommended tests. The majority of survivors and family doctors were satisfied about the SCP. Conclusions A (web-based) SCP for survivors and family doctors can serve as an effective communication vehicle to provide adequate shared care by the long-term follow-up clinic and family doctors.
Physicians' experiences with follow-up care of childhood cancer survivors – challenges and needs
Zenodo (CERN European Organization for Nuclear Research), 2017
BACKGROUND: Regular follow-up care is essential for childhood cancer survivors, but we know little about physicians' experience with it. We aimed to describe: (1) involvement of Swiss physicians in follow-up care; (2) content of follow-up care provided; (3) problems encountered; and (4) additional resources needed. : MATERIALS AND METHODS: Within this cross-sectional survey we sent adapted questionnaires via professional associations to a sample of medical oncologists (MOs), paediatric oncologists (POs), general practitioners (GPs) and paediatricians (P) in Switzerland. Only oncologists involved in follow-up care were asked to report problems. GPs and Ps not involved in follow-up could indicate why. All physicians were asked about the content of follow-up care provided and additional resources needed. RESULTS: A total of 183 physicians responded (27 MO, 13 PO, 122 GP, 21 P). Involved in follow-up were 81% of MOs, 85% of POs, 39% of GPs and 81% of Ps. Followup content differed between oncologists (MO and PO) and generalists (GP and P), with generalists examining or informing less in regard to the former cancer. POs reported more problems than MOs: many POs reported problems with transition of survivors to adult care (91%), and because of financial resources (73%) and time restraints (73%). MOs reported most problems during transition (23%). Not being aware of a survivor was the most common reason for GPs and Ps not participating in followup (74%). All groups reported a need for standardised protocols (85-91%) and specialised training (55-73%). GPs (94%) and Ps (100%) additionally desired more support from oncologists. CONCLUSIONS: To improve quality and efficiency of follow-up care a national follow-up care model including standardised protocols and guidelines needs to be developed.
Physicians’ experience with follow-up care of childhood cancer survivors – challenges and needs
Swiss Medical Weekly
BACKGROUND: Regular follow-up care is essential for childhood cancer survivors, but we know little about physicians' experience with it. We aimed to describe: (1) involvement of Swiss physicians in follow-up care; (2) content of follow-up care provided; (3) problems encountered; and (4) additional resources needed. : MATERIALS AND METHODS: Within this cross-sectional survey we sent adapted questionnaires via professional associations to a sample of medical oncologists (MOs), paediatric oncologists (POs), general practitioners (GPs) and paediatricians (P) in Switzerland. Only oncologists involved in follow-up care were asked to report problems. GPs and Ps not involved in follow-up could indicate why. All physicians were asked about the content of follow-up care provided and additional resources needed. RESULTS: A total of 183 physicians responded (27 MO, 13 PO, 122 GP, 21 P). Involved in follow-up were 81% of MOs, 85% of POs, 39% of GPs and 81% of Ps. Followup content differed between oncologists (MO and PO) and generalists (GP and P), with generalists examining or informing less in regard to the former cancer. POs reported more problems than MOs: many POs reported problems with transition of survivors to adult care (91%), and because of financial resources (73%) and time restraints (73%). MOs reported most problems during transition (23%). Not being aware of a survivor was the most common reason for GPs and Ps not participating in followup (74%). All groups reported a need for standardised protocols (85-91%) and specialised training (55-73%). GPs (94%) and Ps (100%) additionally desired more support from oncologists. CONCLUSIONS: To improve quality and efficiency of follow-up care a national follow-up care model including standardised protocols and guidelines needs to be developed.