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Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

ABSTRACT: BACKGROUND:Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care. METHODS:A qualitative study was conducted with AYA CCS (n?=?29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. RESULTS:Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. CONCLUSIONS:From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.

SUBMITTER: Sadak KT

PROVIDER: S-EPMC7507711 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

Sadak Karim Thomas KT Gemeda Milki T MT Grafelman Michelle M Neglia Joseph P JP Freyer David R DR Harwood Eileen E Mikal Jude J

BMC cancer 20200921 1

<h4>Background</h4>Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care.<h4>Methods</h4>A qualitative stu ...[more]

PMID: 32957976

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Project description:ObjectivesTo investigate experiences of parents of paediatric cancer survivors in cancer-related changes in the parents' daily life (work life, family life, partner relationship and social life) during and after intensive cancer treatment and to examine the reintegration process with its impeding and facilitating factors.DesignThe design of this cross-sectional study involves a qualitative content analysis of semistructured interviews.SettingParticipants were consecutively recruited in clinical settings throughout Germany.ParticipantsForty-nine parents (59% female) of 31 cancer survivors (aged 0-17 at diagnosis of leukaemia or central nervous system tumour) were interviewed approximately 16-24 months after the end of intensive cancer treatment (eg, chemotherapy).ResultsDuring treatment, more than 70% of parents reported difficulties reconciling paid work, household and family responsibilities and caring for the ill child. Couples spent little time with each other and approximately 25% reported dispute and burden. Many parents did not have enough energy for pursuing any hobbies during treatment. However, over the long term, being faced with the child's disease also led to strengthened relationships, new priorities, improved communication, increased mutual trust and greater appreciation for daily life. Supportive social networks (family/friends/employers), a strong partner relationship prior to the diagnosis and the use of psychosocial services (eg, family-oriented rehabilitation) had a positive impact. At the time of the interview, most families had adapted well. However, reintegration took time and some parents lacked the energy required to continue life as they did before the diagnosis.ConclusionsEven though most parents successfully readjusted to a new 'normality', reintegrating into daily life after paediatric cancer treatment remains difficult. Professional psychosocial support could help families with the reintegration process. Lastly, clinical staff (eg, physicians, psychologists, social workers) should bear in mind that the burden of parents does not automatically end with the end of intensive cancer treatment.

Project description:PurposeThis cross-sectional study compared breastfeeding outcomes among childhood cancer survivors to those of women in the general population and evaluated whether breastfeeding is adversely affected by cancer treatment or endocrine-related late effects.MethodsA self-reported survey ascertained breastfeeding practices and incorporated items from the questionnaires used in the Infant Feeding Practices Study II (IFPS II) to allow comparison with the general population. Among 710 eligible survivors, 472 (66%) responded. The participants were predominantly non-Hispanic White (84%), married (73%), and had some college or less (60%). The mean maternal age at the time of birth of the first child after cancer treatment was 24 years (SD 24.3 ± 4.8).ResultsFewer survivors planned to breastfeed than did IFPS II controls (67% vs. 82%, P < .0001), and fewer survivors initiated breastfeeding (66% vs. 85%, P < .0001). The median breastfeeding duration was shorter among survivors, with early undesired weaning occurring sooner in the survivor group (1.4 months, interquartile range (IQR) 0.5-3.5 months) than in the IFPS II group (2.7 months, IQR 0.9-5.4 months). A higher proportion of survivors reported an unfavorable breastfeeding experience (19% vs. 7.5%, P < .0001) and early, undesired weaning (57.5%, 95% CI 51-64) than did IFPS II participants (45.2%, 95% CI 44-47, P = .0164). Among survivors who expressed intention and chose to breastfeed, 46% endorsed disrupted lactation related to physiologic problems with high risk in those overweight/obese.ConclusionsSurvivors are at risk of negative breastfeeding experiences; however, lactation outcomes were not significantly associated with cancer diagnosis, treatments, or endocrine complications.Implications for cancer survivorsPrior research has not examined the association of cancer treatments and clinically validated late effects with lactation outcomes in a clinically diverse childhood cancer survivor cohort. Findings from this study suggest that childhood cancer survivors, especially those who are overweight/obese, are at risk of having negative breastfeeding experiences. Early undesired weaning, physiologic problems related to lactation and misconceptions about breastfeeding, especially fears of passing on cancer through breastmilk, highlight the need for counseling and specialized support to optimize lactation outcomes in this vulnerable population.

Project description:BackgroundeHealth interventions may represent the way forward in following up patients with colorectal cancer (CRC) after hospital discharge to support them in coping with the illness, strengthen their self-management, and increase their quality of life. By involving end users of eHealth in cocreation processes when designing eHealth solutions, an acceptable and relevant product can be secured. Stakeholders' perspectives could aid in closing the gap between research-developed products and the implementation of eHealth services in real-life scenarios.ObjectiveThis study aims to explore the views of patients with CRC, their informal caregivers, and health care professionals (HCPs) on information technology and the design of eHealth support in CRC care.MethodsA qualitative, explorative design was used to conduct 31 semistructured individual interviews with 41% (13/31) patients with CRC, 29% (9/31) informal caregivers, and 29% (9/31) HCPs recruited from the gastrosurgical ward of a university hospital in southwestern Norway. A semistructured interview guide was used for data collection, and the data were analyzed by systematic text condensation.ResultsParticipants described the diverse experiences of patients with CRC seeking web-based information. Age and digital competence were highlighted as influencers of the use of information technology. Patients rarely received advice from HCPs about relevant and secure websites containing information on CRC diagnosis and treatment. Features of desired eHealth interventions in following up patients with CRC were patient education, health monitoring, and communication with HCPs.ConclusionsSeveral elements affect the activities of patients with CRC seeking health information. Age, inexperience with computer technology, and lack of access to web-based health information may reduce the ability of patients with CRC to engage in decision-making processes regarding illness and treatment. An eHealth service for patients with CRC should comprise features for information, education, and support for self-management and should aim to be individually adapted to the patient's age and digital competence. Involving end users of eHealth services is necessary to ensure high-quality tailored services that are perceived as user friendly and relevant to the end users.

Project description:ObjectivesTreatment burden is the workload of healthcare and the impact this has on the individual. Treatment burden is associated with poorer patient outcomes in several chronic diseases. Illness burden has been extensively studied in cancer, but little is known about treatment burden, particularly in those who have completed primary treatment for cancer. The aim of this study was to investigate treatment burden in survivors of prostate and colorectal cancers and their caregivers.DesignSemistructured interview study. Interviews were analysed using Framework and thematic analysis.SettingParticipants were recruited via general practices in Northeast Scotland.ParticipantsEligible participants were individuals who had been diagnosed with colorectal or prostate cancer without distant metastases within the previous 5 years and their caregivers. Thirty-five patients and six caregivers participated: 22 patients had prostate and 13 had colorectal cancers (six male, seven female).ResultsThe term 'burden' did not resonate with most survivors, who expressed gratitude that time invested in cancer care could translate into improved survival. Cancer management was time consuming, but workload reduced over time. Cancer was usually considered as a discrete episode. Individual, disease and health system factors protected against or increased treatment burden. Some factors, such as health service configuration, were potentially modifiable. Multimorbidity contributed most to treatment burden and influenced treatment decisions and engagement with follow-up. The presence of a caregiver protected against treatment burden, but caregivers also experienced burden.ConclusionsIntensive cancer treatment and follow-up regimens do not necessarily lead to perceived burden. A cancer diagnosis serves as a strong motivator to engage in health management, but a careful balance exists between positive perceptions and burden. Treatment burden could lead to poorer cancer outcomes by influencing engagement with and decisions about care. Clinicians should ask about treatment burden and its impact, particularly in those with multimorbidity.Trial registration numberNCT04163068.

Project description:ImportanceDespite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors.ObjectiveTo explain why primary care has not begun to integrate comprehensive cancer survivorship services.Design, setting, and participantsComparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes.Main outcomes and measuresDescription of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care.ResultsThe 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care.Conclusions and relevanceTo increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.

Dataset Information

Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

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Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

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