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Record W2800281261 · doi:10.1002/pon.4754

Falling through the cracks. A thematic evaluation of unmet needs of adult survivors of childhood cancers

2018· article· en· W2800281261 on OpenAlexafffund
Joanne Park, K. Brooke Russell, Kathleen Reynolds, A. Al Madani, Linda E. Carlson, Janine Giese‐Davis

Bibliographic record

VenuePsycho-Oncology · 2018
Typearticle
Languageen
FieldMedicine
TopicChildhood Cancer Survivors' Quality of Life
Canadian institutionsProvincial Health Services AuthorityAlberta Children's HospitalAlberta Cancer FoundationUniversity of CalgaryUniversity of British Columbia
FundersAlberta Cancer Foundation
KeywordsSurvivorship curveMedicineDistressThematic analysisPsychological interventionPopulationChildhood cancerNeeds assessmentGerontologyFamily medicineCancerPsychologyQualitative researchPsychiatryClinical psychology

Abstract

fetched live from OpenAlex

OBJECTIVE: The population of adult survivors of childhood cancers (ASCCs) is growing, resulting in unique long-term challenges. This study explored experiences of perceived unmet ASCC survivorship needs. METHODS: We invited ASCCs to complete surveys sent through the cancer registry. Four open-ended questions allowed participants to write in comments. We analyzed responses to these open-ended questions thematically, employing a process of constant comparison. RESULTS: Our sample included 94 ASCCs who completed open-ended questions (61 female; aged 20-78 years, mean age = 34.47, SD = 11.84, mean = 23.27 years post diagnosis). Identified themes included (1) overlooked experiences of distress; (2) lack of counseling: system, patient, and family barriers; (3) difficulty negotiating future life milestones exacerbated by lack of knowledge; and (4) dissatisfaction with service provision: past and present. Prevalent issues identified by participants included lack of supportive care to address needs, distress due to missed developmental milestones as a result of cancer, lack of knowledge about late-term and long-term effects of cancer treatment, and concern over absence of organized long-term follow-up. CONCLUSIONS: Adult survivors of childhood cancers continue to experience unmet needs during their cancer diagnosis, treatment, and long into survivorship due to the treatment for cancer and ongoing side effects. Solutions could focus on addressing the needs of survivors to bridge system gaps and barriers. Specifically, there is a need to improve psychological interventions and transitions from pediatric to adult-care facilities.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.003
metaresearch head score (Gemma)0.001
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.312
Threshold uncertainty score0.860

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0030.001
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0000.001
Science and technology studies0.0000.001
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0010.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.061
GPT teacher head0.402
Teacher spread0.340 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designQualitative
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations15
Published2018
Admission routes2
Has abstractyes

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