Primary care providers as partners in long-term follow-up of pediatric cancer survivors

Meacham, Lillian R.; Edwards, Paula J.; Cherven, Brooke; Palgon, Michael; Espinoza, S.; Hassen-Schilling, Leann; Mertens, Ann C.

doi:10.1007/s11764-012-0224-z

Cited by 28 publications

(15 citation statements)

References 20 publications

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“… 34 Integrated care, with seamless transitions between care providers, could also be facilitated by patient-held or electronic resources; there is some recent evidence for the usefulness of web-based survivorship care plans for adult survivors of childhood cancer. 35 , 36 Although these approaches are all highly desirable, they bring with them resource implications for primary care. In the current context of English primary care struggling to meet current demand, and training places not being filled, the British Medical Association has recently recommended that practices should receive resources to provide extra services.…”

Section: Discussionmentioning

confidence: 99%

Caring for people living with, and beyond, cancer: an online survey of GPs in England

et al. 2015

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BackgroundIncreasing numbers of people are living with, and beyond, cancer. They are at risk of long-term morbidity and premature mortality due to the consequences of their disease and its treatment. Primary care can contribute to providing ongoing care.AimTo determine the current practice and views of GPs in England regarding cancer survivorship care.Design and settingOnline survey of a sample of 500 GPs, stratified by NHS region in England.MethodThe survey included questions adapted from prior surveys assessing physician knowledge and attitudes regarding care of patients with cancer.ResultsIn total, 500 GPs responded; approximately half reported often providing care to people living beyond cancer for treatment-related side effects (51%), psychological symptoms (65%), and lifestyle advice (55%). Only 29% felt very confident managing treatment-related side effects compared with 46% and 65% for psychological symptoms and lifestyle advice respectively. Half reported usually receiving cancer treatment summaries and survivorship care plans but most of the sample felt these would improve their ability to provide care (76%). Only 53% were convinced of the usefulness of cancer care reviews. Although most felt that primary and specialist care should share responsibility for managing bone (81%) and cardiovascular (77%) health consequences, fewer than half reported often taking previous history of cancer or cancer treatment into consideration when assessing bone health; only one-fifth did this in relation to cardiovascular health. Most responders were interested in receiving education to improve their knowledge and expertise.ConclusionGPs have a potentially important role to play in caring for people following cancer treatment. This study has highlighted areas where further support and education are needed to enable GPs to optimise their role in cancer survivorship care.

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Section: Discussionmentioning

confidence: 99%

Caring for people living with, and beyond, cancer: an online survey of GPs in England

et al. 2015

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“…The checklist of criteria to identify clinically relevant adverse health events was adapted from Oeffinger, Eshelman, Tomlinson, Buchanan, and Foster () and survivorship literature (Aziz et al., ; Ginsberg et al., ; Hudson et al., ; Meacham et al., ) in order to establish an Adverse Health Event Index (Table ). Respondents were asked to respond to dichotomous ratings and to check all of the health problems they had experienced, including respiratory, gastroenterology, pain, endocrine, fertility, musculoskeletal functions, neurocognitive impairment, fatigue and altered body image (Table ).…”

Section: Methodsmentioning

confidence: 99%

“…The checklist of criteria to identify clinically relevant adverse health events was adapted from Oeffinger, Eshelman, Tomlinson, Buchanan, and Foster (2000) and survivorship literature (Aziz et al, 2006;Ginsberg et al, 2006;Hudson et al, 2011;Meacham et al, 2012) in order to establish an Adverse Health Event Index (Table 1).…”

Section: Adverse Health Event Indexmentioning

confidence: 99%

Adverse health outcomes and health concerns among survivors of various childhood cancers: Perspectives from mothers

et al. 2017

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Advanced therapies have improved outcomes and also resulted in a growing risk of long-term adverse health events. This study intends to estimate incidences of adverse health events and examine differences in adverse health events among childhood cancer survivors, and to understand the concerns of mothers after their child has completed cancer treatment. An explanatory sequential mixed-method was used. A total of 201 paediatric cancer survivors' mothers with mean age 43.6 years were recruited. Of the survivors, 12.4% experienced five or more adverse health events. The incidence of adverse health events of altered body image, fatigue and neurocognitive problems were 31.54%, 14.77% and 12.53% respectively. Among survivors, significant differences in adverse health events of pain, endocrine problems and altered body image issues were identified. Survivors receiving radiotherapy, bone marrow transplants or completing treatment after 6-10 years experienced significantly more adverse health events. Maintaining health was the greatest concern for mothers, and the qualitative reports of their concerns could be categorised: living in uncertainty, and keeping forward-looking. Childhood brain tumour survivors were identified as experiencing more adverse health events than other survivors. The need for healthcare teams to consider mothers' health concerns was highlighted.

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“…Essential to any model will be communication and education of both providers and survivors on the potential health problems facing AYA survivors after cancer therapy through a survivorship medical summary. 24 Developing mechanisms to ensure portability of this care plan and the ability to update the plan are important to AYA survivors who experience many transitions in their health care. Several initiatives are underway to ensure access to key documents for survivors and providers including Cancer SurvivorLink, a patient-controlled web-based system that allows survivors to store their key health documents electronically and access them at any time from anywhere and also share them electronically with health care providers who are registered on (www.…”

Section: Original Reportmentioning

confidence: 99%

Adolescent and young adult perceptions of cancer survivor care and supportive programming

Wasilewski‐Masker¹

2016

J Community Support Oncol

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Background Improvements in cancer therapy have led to an increasing number of adolescent and young adult (AYA) survivors of childhood cancers. Many survivors have ongoing needs for support and information that are not being met. Objective To conduct a program evaluation to identify AYAs' perceptions of survivor care services. Methods Using a community-based approach, 157 AYA childhood cancer survivors (aged 15-30 years) completed a program evaluation survey to assess perceptions of the importance of survivor patient care services and supportive programming using a Likert scale (1, Not At All Important; 2, Of Little Importance; 3, Somewhat Important; 4, Important; 5, Very Important). Results Receipt of a medical summary was ranked as the most important survivor patient care service (mean, 4.5; SD, 0.91). 70% of respondents reported interest in late-effects education. Informational mailings were the most valued form of supportive programming and were endorsed by 62% of AYAs. Older survivors were more likely to value workshops (P = .01-0.05), whereas those aged 19-22 years valued weekend retreats (P < .01) and social activities (P < .01). Survivors of brain/CNS tumors were more likely to value social activities (P = .03) and support groups (P = .03), compared with leukemia survivors. Limitations Contact information from the hospital tumor registry was used, which limited the number of correct addresses. Conclusion The greatest care needs reported by AYA survivors of childhood cancer are services such as generation of a medical summary, late-effects education, and survivor-focused follow-up care, which are provided through cancer survivor programs. Development of additional programming to engage and further educate and encourage AYA survivors will be important to reinforce their adherence with survivor care throughout adulthood.

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Primary care providers as partners in long-term follow-up of pediatric cancer survivors

Cited by 28 publications

References 20 publications

Caring for people living with, and beyond, cancer: an online survey of GPs in England

Caring for people living with, and beyond, cancer: an online survey of GPs in England

Adverse health outcomes and health concerns among survivors of various childhood cancers: Perspectives from mothers

Adolescent and young adult perceptions of cancer survivor care and supportive programming

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