Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer

Sperling, Cecilie Dyg; Petersen, Gitte Stentebjerg; Hølge‐Hazelton, Bibi; Graugaard, Christian; Winther, Jeanette Falck; Guðmundsdóttir, Þorgerður; Ahrensberg, Jette; Schmiegelow, Kjeld; Boisen, Kirsten A; Olsen, Pia Riis; Heerdegen, Anne Christine Stender; Sonnenschein, Emilie Sofia; Knudsen, Janne Lehmann

doi:10.1089/jayao.2015.0063

Cited by 19 publications

(20 citation statements)

References 33 publications

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“…Adolescent and young adult cancer patients were involved throughout the entire process alongside a professional advisory board of oncologists and youth researchers. The final questionnaire contained 151 closed‐ and open‐ended items …”

Section: Methodssupporting

confidence: 91%

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross‐sectional nationwide questionnaire study

et al. 2018

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Section: Methodssupporting

confidence: 91%

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross‐sectional nationwide questionnaire study

et al. 2018

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“…The UK represents the majority of the publications (n = 12), followed by the United States (n = 7) and Australia (n = 3) . A single study represents several countries (Germany, Iceland, Italy, Japan, Spain, the UK), and the remaining studies report findings from other countries: Sweden, Denmark, the Netherlands and Canada …”

Section: Resultsmentioning

confidence: 99%

“…Some studies (n = 8) represented heterogeneous cancer types with no specific population/disease focus . Other studies (n = 8) also represented heterogeneous cancer types but had specific foci, for example, studies on young people (n = 3), palliation (n = 3) and a community with high cancer disparity (n = 1) …”

Section: Resultsmentioning

confidence: 99%

“…Because these studies reported PPI at several stages, the number of research stages (n = 41) in the figure exceeds the number of studies included (n = 27). Most studies reported PPI for prioritization of research themes/questions (n = 10), followed by development of recruitment strategies for research (n = 9), definition of research themes/questions (n = 7), method development (n = 6), study design development (n = 3), dissemination strategy (n = 2), dissemination (n = 2), analysis (n = 1) and recruitment (n = 1) . None of the studies involved patients in data generation (eg, as interviewers/facilitators).…”

Section: Resultsmentioning

confidence: 99%

“…Poor generalizability was also described in terms of the composition of the sample or included participants. Studies problematized the over‐representation of women and the underrepresentation of ethnic minorities (n = 4), and patients with an advanced and aggressive illness and newly diagnosed and relapsed patients . The issue of representativity reflects a classical methodological concern in studies that seek variation in their population but also touches upon the issue of opportunities to participate in PPI.…”

Section: Resultsmentioning

confidence: 99%

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Current trends in patient and public involvement in cancer research: A systematic review

Pii

Schou

Piil

et al. 2018

Health Expectations

101

161

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BackgroundPatient and public involvement (PPI) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research.ObjectiveTo describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations.MethodsA search was conducted on PubMed, CINAHL and PsycINFO for literature published from December 2006 to April 2017. Original research studies describing the involvement of cancer patients, stakeholders and carers as active partners at any stage of the research process were included.ResultsTwenty‐seven studies were included, the majority reporting PPI at the early stages of research, that is, during the definition and prioritization of research topics and the development of recruitment strategies. Few studies reported PPI at later stages and across the research process. Challenges and recommendations were only briefly described, and critical reflection on the PPI process was lacking.Conclusion PPI needs to be integrated more broadly in the cancer research process. The quality of reporting PPI should be strengthened through greater critical reflections including both positive and negative experiences of the PPI process. This will contribute to the further development of PPI and its potential in cancer research.

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Patient and public involvement in cancer research: A scoping review

Colomer‐Lahiguera,

Steimer,

Ellis

et al. 2023

Cancer Medicine

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IntroductionPatient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research.MethodsWe searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full‐text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format.ResultsWe screened 22,009 titles/abstract, reviewed 375 full‐text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co‐design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI.ConclusionsResults of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes.Patient or Public ContributionTwo patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co‐authors of this manuscript.

show abstract

Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer

Cited by 19 publications

References 33 publications

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross‐sectional nationwide questionnaire study

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross‐sectional nationwide questionnaire study

Current trends in patient and public involvement in cancer research: A systematic review

Patient and public involvement in cancer research: A scoping review

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