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Oncology
Protocol
VersKiK qualitative study design: actual follow-up needs of paediatric cancer survivors, their informal caregivers and follow-up stakeholder perceptions in Germany
  1. Ekaterina Aleshchenko1,
  2. Enno Swart1,
  3. Mathias Voigt2,
  4. Thorsten Langer3,
  5. Gabriele Calaminus4,
  6. Juliane Glogner4,
  7. Katja Baust4
  1. 1Medical Faculty, Institut for Social Medicine and Health Systems Research, Otto von Guericke University Magdeburg, Magdeburg, Germany
  2. 2Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Rheinland-Pfalz, Germany
  3. 3University Hospital of Schleswig-Holstein, Luebeck, Germany
  4. 4Department of Pediatric Hematology and Oncology, University Hospital Bonn, Bonn, Nordrhein-Westfalen, Germany
  1. Correspondence to Dr Ekaterina Aleshchenko; ekaterina.aleshchenko{at}med.ovgu.de

Abstract

Introduction This article presents the study design of the qualitative part of the VersKiK study (Long-term care, care needs and wellbeing of individuals after cancer in childhood or adolescence: study protocol of a large scale multi-methods non-interventional study) aiming to explore actual follow-up needs of childhood and adolescence cancer survivors and their informal caregivers, gaps in current follow-up care provision and trajectories of cancer survivors’ transition from paediatric to adult healthcare.

Methods and analysis We will conduct up to 30 interviews with survivors of childhood and adolescence cancer and their informal caregivers with up to 20 participant observations of follow-up appointments. The results of these will be discussed in up to four focus groups with healthcare professionals and representatives of self-help groups. The study design aims to evaluate follow-up care after childhood cancer considering perspectives from survivors, their informal caregivers as well as healthcare providers. The combination of different data sources will allow us to get an in-depth understanding of the current state of follow-up care after paediatric cancer in Germany and to suggest recommendations for care improvement.

Ethics and dissemination The VersKiK study was approved by the Ethics Committee Otto von Guericke University on 2 July 2021 (103/21), by the Ethics Committee of Johannes Gutenberg University Mainz on 16 June 2021 (2021-16035), by the Ethics Committee University of Lübeck on 10 November 2021 (21-451), by the Ethics Committee University of Hospital Bonn on 28 February 2022 (05/22). For each part of the qualitative study, a separate written informed consent is prepared and approved accordingly by the ethics committees named above.

Trial registration number Registered at German Clinical Trial Register, ID: DRKS00026092.

  • Organisation of health services
  • Paediatric oncology
  • Patient-Centered Care
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https://doi.org/10.1136/bmjopen-2023-072860

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    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • Combined data sources approach based on multiple interconnected human behaviour theories is aimed to provide in-depth insight into actual needs and behavioural drivers of paediatric cancer survivors.

    • Novel case study approach to ‘typical pathway’ of survivors discussed in heterogeneous composition of focus groups.

    • Selection bias in volunteer-based recruitment as well as tendency to avoid negative feedback should be considered.

    Introduction

    International research has recently shown that paediatric cancer survivors and their informal caregivers often suffer from a lack of specialised1 2 and tailored3–5 information, discrepancies in follow-up care organisation,6–8 and insufficient psychosocial support1 9–11 probably resulting in lower adherence to follow-up recommendations and guidelines.

    Although different approaches to defining drivers of human behaviour exist, recent research tends to describe them in terms of intended actions, caused by particular needs.12 A need in healthcare is commonly defined as a capacity to benefit.13 Health needs arise not only from actual physical and psychological inadequacies felt by an individual but also caused by their subjective perception. Theory of planned behaviour (TPB), one of the most frequently used approaches to explain health behaviour,7 14–16 considers internal perception from three interconnected perspectives—attitude, subjective norm and perceived behavioural control.17 In addition, health needs also might be influenced by broader social and environmental stimuli.18 Describing those factors, Bargh et al suggested a concept of ‘prime’ within a framework of their stereotype priming model theory (SPM).19–21 Being referred to as ‘the passive, subtle, and unobtrusive activation of relevant mental representations by external, environmental factors’ (p128),22 they were shown to unconsciously underlie different types of health behaviour.23 Consequently, the preferred health behaviour of paediatric cancer survivors,24 25 like follow-up attendance, as well as their well-being26 27 and that of their relatives,28 29 is defined by their very special medical and psychosocial needs.29–31

    While only a minority of paediatric cancer survivors in Germany benefit from multidisciplinary, risk-based follow-up care32 33 due to limited capacities, most follow-up care provided outside of those specialised structures is heterogeneous.34 35 It has been previously shown that a lack of coordination between primary care physicians and oncologists contributes to lower quality of follow-up care, insufficient psychosocial support and increased dissatisfaction in cancer survivors.35–37

    To address the issues named above and to better understand follow-up attendance in paediatric cancer survivors in Germany, we pursue the following goals in the qualitative part of the VersKiK study: (1) to explore, if the follow-up care provided meets the actual care needs of patients, informal caregivers and corresponds to providers’ perceptions; (2) to evaluate whether survivors and their informal caregivers can manage follow-up care using the current sources of information; and (3) to explore possible determinants of adherence to follow-up recommendations from a survivors’ perspective.

    Additionally, we will study the trajectories of transition process in paediatric cancer survivors. Being in a very vulnerable phase of their personal development, transition patients[i] are particularly susceptible to the disadvantages of heterogeneous follow-up care38–40; for example, in Germany, they might be treated in different healthcare institutions, requiring additional self-management efforts41 or support of informal caregivers, mostly parents. Those are key providers of social support42 and often overtake coordinating tasks.43 Being desirable up to a certain age, such support can prevent or delay independent healthcare coordination in transition patients.44 Moreover, they are shown to influence survivors’ mental and physical health,45 thus affecting their coping strategies.46

    Details of the VersKiK study are published elsewhere47; the study has a duration of 4 years (September 2020–August 2024).

    Methods and analyses

    The qualitative part of VersKiK combines interviews, participant observations and focus groups, developed in accordance with Consolidated criteria for Reporting Qualitative research Guidelines48 (including a pilot phase with 12 test interviews,[ii] followed by an adaptation of interview guides to the feedback received). Figure 1 provides a general overview of its methodology.

    Figure 1
    Figure 1

    Design of a qualitative module of VersKiK.

    We will describe the different components of the study as follows.

    Patient and public involvement

    Patients and the public were not involved in this research’s design, conduct, reporting or dissemination plans.

    Recruitment

    To recruit participants, we placed advertisements in specialised social media (Facebook and Twitter of Children Cancer Foundation, participating university hospitals) and magazines (WIR—a German magazine for patients with childhood cancer, survivors and their parents), involved self-help groups, and distributed study materials in participating university hospitals. Based on the researchers’ previous experience, results of test interviews and the literature reviewed,49 we estimated that the recruitment of up to 30 cancer survivors and their informal caregivers would give us an opportunity to achieve inductive thematic saturation.50 We plan to adjust the convenience sampling approach51 to obtain a heterogeneous field of participants with respect to age, diagnoses and duration of follow-up, or grade of cancer survived. Participants with insufficient cognitive function will not be included in the study, since it might impact quality of the interview being done. The interviews will be organised multicentric in different parts of Germany—University Hospital Schleswig-Holstein, University Hospital Bonn and University Hospital Magdeburg.

    Healthcare professionals for focus groups will be recruited purposively51 through university hospitals attending the project. As shown by previous research, two to three focus groups are sufficient to reach a thematic saturation.52 We plan to organise up to four focus groups, each with up to eight participants. As eligibility criteria we consider experience in follow-up care of any stage and form, including self-help groups (eg, general practitioners, specialised inpatient, outpatient and rehabilitation facilities representatives). We are aiming to gain representatives of each of the groups named to participate in every focus group to overcome the fragmentation of their specialised knowledge and work out consentaneous suggestions on follow-up organisation improvement.

    Due to the current pandemic situation related to theCOVID-19, interviews and focus groups might be performed in either of two formats: as a video conference or as a face-to-face event.

    Informed consent will be obtained from all participants through signing a specially developed form; for minor participants, the signature of a caregiver is also needed.

    Interviews

    We developed an episodic narrative interview53 in the German language based on theoretical frameworks of TPB and SPM. The main elements of the episodic narrative interview include elements of the semistructured interview,54 narrative inquiry55 and episodic interview56 to enable articulations potential participants to recount their experiences in detail and to stimulate them to express their needs with no limitations.53

    We stratified interview guidelines by age and role—for children/teenagers (12–18 year olds), informal carergivers and adult patients. In each interview, a special block of questions focusing on transition—both current and past—was included.

    At the beginning of an interview, paediatric cancer survivors or their informal caregivers will be asked an open question to tell their own ‘survivorship story’ inducing narratives referring to all contents related to their survivorship experience that comes to their mind spontaneously.57 58 To define ‘primes’, unconscious stimuli underlying health behaviour,20 we will ask survivors and/or their informal caregivers to give their associations to the terms ‘cancer’, ‘follow-up’ and ‘survival’. Both questions developed within the SPM framework are aimed at appealing to actual experiences of childhood cancer survivors and their informal caregivers and to minimise social desirability and confirmation biases. Translated interview guides are shown in Attachment 1.

    After these introducing open questions, interview guidelines are continued in a modular design: each block of questions consists of an introductory question, a Likert-scale question specifying it and a subquestion based on the answer to the Likert-scale to gain more specific information. Each block is dedicated either to an element of TPB or to the topics of ‘information needs’ and ‘transition’ (see table 1). We included questions with a Likert scale to capture the tendency of the initial response in each block of questions and adjust subsequent subquestions accordingly.

    View this table:
    Table 1

    Theory-based structures of interview guides

    An example block question (translated):

    If you imagined you hadn’t had cancer, how do you think your everyday life would be different now?

    Likert-question: To what extent does your cancer affect your everyday life today?

    If the lower half of the scale: Why do you think that your life is little influenced by it?

    If upper half of the scale: In which spheres of your life, do you feel mostly this influence?

    In the interview guidelines, two types of five-step Likert scales ranging from: ‘fully agree’ to ‘totally disagree’ (level of (dis-)agreement scale), respectively, from ‘not at all’ to ‘highly’[iii] (level of intensity scale) are used that assess the extent and the intensity of consent.59 We also suggest additional questions to some of the modules if deeper information is needed. To make sure that all terms used in the block questions are clear to participants, we developed a glossary (Attachment 2) which can be consulted if necessary.

    Survivorship stories of all respondents will be standardised and used together with observation results for creation of case studies. Structures of interview guidelines in association with TPB and SPM elements are presented in table 1.

    Participant observations

    We conducted an unstructured participant observation of follow-up appointments to gain insights of experiences in follow-up of survivors and their informal caregivers. Participant observation has already been shown to be applicable to collect unbiased process data in healthcare research in general60 and in cancer care in particular.61

    The participant observation will take place in the University Hospital Schleswig-Holstein, where multidisciplinary follow-up care is already established: one of the researchers will observe follow-up appointments and take notes of the procedure and topics that are arising during physician–patient communication. Based on previous research and the structure of the follow-up appointment, which is known prior to observation process, we aim to observe up to 20 follow-up appointments in order to reach inductive thematic saturation.62 63

    Observations will be conducted by researcher with psychological qualification, having experience in observations. Having no medical education, the researcher will carry out the observation without a previous notion of what to observe, but with an intent to explore actual experiences during a follow-up appointment. Prior to observation, a personal data statement will be signed. Written informed consent was also obtained from all patients. Participating healthcare professional was only vaguely informed about the study purpose in order to minimise a Hawthorne effect. The observations were manually recorded in unstructured form—field notes—not to limit the domains of observation.64

    Focus groups

    To obtain in-depth knowledge on follow-up organisation from a healthcare providers’ side, we will organise up to four focus groups in Bonn, Luebeck and Magdeburg. We will invite healthcare professionals involved in different stages of follow-up care and representing different institutions, including representatives of self-help groups and primary care providers. Focus group discussions are aimed to specifically explore the level of knowledge of follow-up guidelines as well as current challenges on intersectional and interdisciplinary cooperation. They should also optimise the understanding of survivors’ needs in the context of follow-up care structures.

    Discussion in focus groups should be stimulated by case studies discussion moderated by a trained psychologist. Being ‘an empirical inquiry that investigates a contemporary phenomenon and within its real-life context’,50 case study method provides an opportunity to consider peculiar behaviour as a part and a reaction to surrounding circumstances.51 52 We will construct two case studies53 to illustrate typical, but not individual survivors’ experiences. The main goal of them is to describe a ‘typical pathway’ of a paediatric cancer survivor focusing on organisational issues. The case studies aim to stimulate focus group discussions and overcome fragmentation of providers’ vision of follow-up, showing them survivors’ perspective of follow-up organisation. We decided to prepare two case studies to cover also challenges from the transition phase (table 2).

    View this table:
    Table 2

    Description of case studies

    Case study 1 is supposed to describe a typical case of an adult survivor. We decided to describe a female adult survivor in order to approach many adult-life topics, such as a desire to have children, as well as to include the topic of secondary neoplasm and related regular diagnostic procedures for prevention.65 66 The type of cancer is chosen due to its high prevalence.67

    In the second case study, we are aiming to address challenges which are typically experienced by transition patients.68 We decided to describe a male transition patient based on prevalence of chosen diagnoses.67 We have chosen a former patient with brain tumour who completed a typical complex treatment followed by unavoidable late effects.69

    To create case studies, we will combine typical elements from narratives of survivors’ and parents (collected as part of the interviews) with frequently mentioned themes from participant observations, providing an unbiased ‘snapshot’70 of real-life experiences. This combination is aimed to enable triangulation and to avoid a confirmation bias.

    To moderate discussions, we will prepare a special form containing major points to be discussed based on case studies suggested (eg, challenges faced by survivor, organisational obstacles/supportive measures).

    Analyses

    All interviews and focus groups discussions will be audio recorded and professionally transcribed. To analyse obtained data, the research team will use specialised software MaxQDA.

    We are planning mostly to analyse interviews inductively, applying both thematic content analyses (for semistructured interview part) and narrative analyses (for survivorship stories).71 Themes will be initially identified by one researcher and double checked by others. We will check for overlaps in themes, for example, grouped by age groups and questions in order to obtain both a comprehensive but sparse set of themes. Additionally, we will support qualitative analyses by adding quantitative methods based on TBH and SPM attributes,72 73 aiming to define which dimensions mostly affects the behaviour of paediatric cancer survivors and their informal caregivers. To do so, we will compare the dimensions regarding the relative strength of predictors of Likert-Scores (type of cancer, age at diagnosis, time since diagnosis, occurrence of relapse, yearly number of follow-up care visits) using linear regression models. To enhance trustworthiness, we will use ‘primes’ expressed by participants. We will differentiate ‘primes’ as ‘negative’, ‘neutral’ and ‘positive’, thus double checking the tendencies of answers.

    We will consider data saturation achieved as no new codes or themes emerge.50

    To analyse transcripts of focus groups, we will also apply thematic content analyses. To synthesise and compare results of both qualitative methods, we will use Framework analyses.74 We will use ‘open-coding’ approach to include impressionistic elements as well.72 Initial coding will be conducted by one researcher and double checked by another. To give a measure of objectivity, the categories and themes will be discussed between all members of the research team. We will create a matrix summarising the data by category from each transcript to map connections between the categories to explore relationships and/or causality between answers of two groups of respondents capturing different perspectives of follow-up (survivors and their informal caregivers and healthcare providers). Through this approach, we will also achieve triangulation. Planned analyses design is presented in figure 2.

    Figure 2
    Figure 2

    Planned analyses of qualitative module of VersKiK.

    Discussion

    In VersKiK, we will use two qualitative research approaches—interview and focus group—in order to get in-depth understanding of different aspects in follow-up after paediatric cancer and suggest evidence-based measures to improve it. Studying particular needs and preferences of paediatric cancer survivors and their relatives from multiple perspectives allow us to propose adaptations to existing follow-up guidelines, as their adjustment to actual needs of survivors and their relatives may probably affect positively survivors’ adherence to them.75

    Although a number of follow-up care models exist,76 survivors’ adherence to follow-up recommendations and guidelines is a relevant precondition for successful implementation. A number of attempts to understand its determinants have already been taken, including studies based on TBH.7 30 To add to this knowledge, we amended qualitative methodological approaches based on TBH with those relying on SPM to consider the influence of previous experience and avoid potential response bias.77 78 In addition, by inclusion of open questions on individual survivorship experiences into the interviews, we refer to actual memories and emotions of paediatric cancer survivors and their informal caregivers, thus trying to reveal implicit unmet needs.79

    At the same time, these narratives contribute to the development of case studies, which enrich the discussion on follow-up organisation with healthcare providers.

    We are going to involve in these discussions as not only representatives of multidisciplinary care models but also primary care providers. Previous research has already shown that, playing a crucial role in it, primary care providers are still not enough involved into organisation of a follow-up care.80

    It has been previously shown that development of special tools (eg, survivorship care plans81 or application of modern technologies82) facilitate communication between primary care providers and specialised care providers. This is seen as crucial for the improvement of quality of care.83 84 Being already developed in Germany, follow-up guidelines are still not being communicated adequately.32 Focus groups will also refer to this communication gap.

    Need-tailored follow-up care and appropriate organisation is especially crucial for transition patients.85 This group of cancer survivors has special concerns on physical, emotional and practical issues that should be considered in follow-up care.86 We will address them by including a separate case study including transition aspects into focus groups discussion. Moreover, each interview guideline has a special block of questions considering transition experiences of paediatric cancer survivors and their informal caregivers.

    Strengths and limitations

    Usage of multiple interconnected theories is aimed to obtain an in-depth understanding of factors affecting adherence of paediatric cancer survivors and their informal caregivers. Usage of combined data sources (interviews, observation and focus groups) allows us to minimise a social desirability bias, focusing the same issues from different perspectives. Heterogeneous composition of focus groups also supports changes of perspectives. Framework methodology is aimed to work out objective knowledge on important issues of follow-up both for survivors, their informal caregivers and healthcare providers, arising from different data sources. Involvement of a multidisciplinary researchers’ team with experts from epidemiology, healthcare research and clinician is also a strength of this study.

    We are also aware of a number of limitations of our study design. First, paediatric cancer survivors and their informal caregivers might be constrained by sharing negative information and therefore give socially acceptable responses. To mitigate this limitation, we constructed interview guidelines based on different types of questions, including free associations task and description of individual survivorship trajectories, and will conduct observation of follow-up appointments. Second, the interview will be conducted on a volunteer basis and in hospitals with established follow-up care, thus the answers might not reflect the perspectives of those paediatric cancer survivors who are not involved in follow-up or are not aware of the risk of childhood cancer late-effects. In general, we will not be able to reach potential participants for interviews who no longer attend follow-up care.

    Ethical issues also might affect the results: interviewed survivors could have felt uncomfortable sharing their traumatising experiences or still suffer cancer stigmatisation. Additionally, survivors and/or their informal caregivers might have been afraid of deteriorating their relationships with follow-up healthcare providers through giving ‘undesirable’ answers, as recruitment was mostly conducted through them. To overcome this limitation, in our case studies, we combined results of interviews with results of participant observations. We will conduct observations in a single institution in Germany, one of few providing an established multidisciplinary follow-up appointments’ opportunity, so the results might be limited to experiences of those survivors who are actively involved in follow-up. Finally, we are considering adherence to follow-up from survivors and/or their informal caregivers perspective, and do not aim to discuss healthcare provides’ awareness on childhood cancer follow-up recommendations.

    Conclusion

    The qualitative part of the VersKiK study aims to extend current knowledge on the trajectories of paediatric cancer follow-up, the determinants of cancer survivors’ adherence to follow-up care and their perceptions of its quality. This knowledge may be important for further development of follow-up guidelines. At the end of the study, we will organise a workshop with potential stakeholders and decision-makers in order to discuss practical applications of VersKiK results.

    Ethics and dissemination

    The VersKiK study was approved by the Ethics Committee Otto von Guericke University on 2 July 2021 (103/21), by the Ethics Committee of Johannes Gutenberg University Mainz on 16 June 2021 (2021-16035), by the Ethics Committee University of Lübeck on 10 November 2021 (21-451), by the Ethics Committee University of Hospital Bonn on 28 February 2022 (05/22). For each part of the qualitative study, a separate written informed consent is prepared and approved accordingly by ethics committees named above.

    Ethics statements

    Patient consent for publication

    Acknowledgments

    We thank members of VersKiK-consortium for active participation and support of the study: C Spix, P Trocchi, P Ihle, J Kuepper-Nybelen, C Luepkes, T Kloppe, D Horenkamp-Sonntag, I Meier, U Marschall, P Droege, M Klein, C Apfelbacher.

    References

    1. ↵
      1. Jones JM,
      2. Fitch M,
      3. Bongard J, et al
      . The needs and experiences of post-treatment adolescent and young adult cancer survivors. J Clin Med 2020;9:1444. doi:10.3390/jcm9051444
    2. ↵
      1. Christen S,
      2. Weishaupt E,
      3. Vetsch J, et al
      . Perceived information provision and information needs in adolescent and young adult cancer survivors[published Online First]. Eur J Cancer Care (Engl) 2019;28:e12892. doi:10.1111/ecc.12892
    3. ↵
      1. Christen S,
      2. Vetsch J,
      3. Mader L, et al
      . Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors. Support Care Cancer 2016;24:3425–36. doi:10.1007/s00520-016-3157-7
      OpenUrl
    4. ↵
      1. Klemanski DL,
      2. Browning KK,
      3. Kue J
      . Survivorship care plan preferences of cancer survivors and health care providers: a systematic review and quality appraisal of the evidence. J Cancer Surviv 2016;10:71–86. doi:10.1007/s11764-015-0452-0
      OpenUrlCrossRefPubMed
    5. ↵
      1. Vetsch J,
      2. Rueegg CS,
      3. Mader L, et al
      . Follow-up care of young childhood cancer survivors: attendance and parental involvement. Support Care Cancer 2016;24:3127–38. doi:10.1007/s00520-016-3121-6
      OpenUrl
    6. ↵
      1. Gianinazzi ME,
      2. Rueegg CS,
      3. Wengenroth L, et al
      . Adolescent survivors of childhood cancer: are they vulnerable for psychological distress? Psychooncology 2013;22:2051–8. doi:10.1002/pon.3249
      OpenUrlCrossRefPubMed
    7. ↵
      1. Baenziger J,
      2. Roser K,
      3. Mader L, et al
      . Can the theory of planned behavior help explain attendance to follow-up care of childhood cancer survivors? Psychooncology 2018;27:1501–8. doi:10.1002/pon.4680
      OpenUrl
    8. ↵
      1. Lou Y,
      2. Yates P,
      3. Chan RJ, et al
      . Unmet supportive care needs and associated factors: a cross-sectional survey of chinese cancer survivors. J Canc Educ 2021;36:1219–29. doi:10.1007/s13187-020-01752-y
      OpenUrl
    9. ↵
      1. Carlsson T,
      2. Kukkola L,
      3. Ljungman L, et al
      . Psychological distress in parents of children treated for cancer: an explorative study. PLoS ONE 2019;14:e0218860. doi:10.1371/journal.pone.0218860
    10. ↵
      1. Hendriks MJ,
      2. Harju E,
      3. Roser K, et al
      . The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer. BMC Health Serv Res 2021;21:503. doi:10.1186/s12913-021-06543-9
    11. ↵
      1. Cho IY,
      2. Chung N-G,
      3. Baek HJ, et al
      . Health behaviors of caregivers of childhood cancer survivors: a cross-sectional study. BMC Cancer 2020;20:296. doi:10.1186/s12885-020-06765-w
    12. ↵
      1. Böhm G,
      2. Pfister H-R
      . How people explain their own and others’ behavior: a theory of lay causal explanations. Front Psychol 2015;6:139. doi:10.3389/fpsyg.2015.00139
    13. ↵
      1. Frankel S
      . Health needs, health-care requirements, and the myth of infinite demand. The Lancet 1991;337:1588–90. doi:10.1016/0140-6736(91)93276-F
      OpenUrl
    14. ↵
      1. Xu Q,
      2. Xie H,
      3. Zheng D, et al
      . Predicting intention to participate in community physical activities for adults with physical disabilities. J Pers Med 2022;12:11.:1832. doi:10.3390/jpm12111832
      OpenUrl
    15. ↵
      1. Keshavarzi A,
      2. Asadi S,
      3. Asadollahi A, et al
      . Tendency to breast cancer screening among rural women in southern iran: a structural equation modeling (SEM) analysis of theory of planned behavior. Breast Cancer (Auckl) 2022;16:11782234221121001. doi:10.1177/11782234221121001
    16. ↵
      1. Adams C,
      2. Gringart E,
      3. Strobel N
      . Explaining adults’ mental health help-seeking through the lens of the theory of planned behavior: a scoping review. Syst Rev 2022;11:160. doi:10.1186/s13643-022-02034-y
    17. ↵
      1. Ajzen I
      . The theory of planned behaviour: reactions and reflections. Psychology & Health 2011;26:1113–27. doi:10.1080/08870446.2011.613995
      OpenUrl
    18. ↵
      1. Wright J,
      2. Williams R,
      3. Wilkinson JR
      . Health needs assessment: development and importance of health needs assessment. BMJ 1998;316:1310–3. doi:10.1136/bmj.316.7140.1310
      OpenUrlFREE Full Text
    19. ↵
      1. Shanks DR,
      2. Newell BR,
      3. Lee EH, et al
      . Priming intelligent behavior: an elusive phenomenon. PLoS ONE 2013;8:e56515. doi:10.1371/journal.pone.0056515
    20. ↵
      1. Bargh JA,
      2. Chen M,
      3. Burrows L
      . Automaticity of social behavior: direct effects of trait construct and stereotype-activation on action. J Pers Soc Psychol 1996;71:230–44. doi:10.1037//0022-3514.71.2.230
      OpenUrlCrossRefPubMedWeb of Science
    21. ↵
      1. Bhalla M,
      2. Proffitt DR
      . Visual-motor recalibration in geographical slant perception. J Exp Psychol Hum Percept Perform 1999;25:1076–96. doi:10.1037//0096-1523.25.4.1076
      OpenUrlCrossRefPubMedWeb of Science
    22. ↵
      1. Huang JY,
      2. Bargh JA
      . The selfish goal: autonomously operating motivational structures as the proximate cause of human judgment and behavior. Behav Brain Sci 2014;37:121–35. doi:10.1017/S0140525X13000290
      OpenUrlPubMed
    23. ↵
      1. Pechmann C
      . A comparison of health communication models: risk learning versus stereotype priming. Media Psychology 2001;3:189–210. doi:10.1207/S1532785XMEP0302_04
      OpenUrl
    24. ↵
      1. Stevenson W,
      2. Bryant J,
      3. Watson R, et al
      . A multi-center randomized controlled trial to reduce unmet needs, depression, and anxiety among hematological cancer patients and their support persons. J Psychosoc Oncol 2020;38:272–92. doi:10.1080/07347332.2019.1692991
      OpenUrl
    25. ↵
      1. Nicklin E,
      2. Pointon L,
      3. Glaser A, et al
      . Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: 'it’s all the aftermath, and then you’re forgotten about'. Support Care Cancer 2021;29:6315–24. doi:10.1007/s00520-021-06193-x
      OpenUrl
    26. ↵
      1. Cheng L,
      2. Yu L,
      3. Huang H, et al
      . Lived experiences with unmet supportive care needs in pediatric cancer: perspective of Chinese children and their parents. Int J Nurs Sci 2022;9:430–7. doi:10.1016/j.ijnss.2022.09.001
      OpenUrl
    27. ↵
      1. Watanabe K,
      2. Katayama K,
      3. Yoshioka T, et al
      . Impact of individual background on the unmet needs of cancer survivors and caregivers - a mixed-methods analysis. BMC Cancer 2020;20:263. doi:10.1186/s12885-020-06732-5
    28. ↵
      1. Ryder-Burbidge C,
      2. Diaz RL,
      3. Barr RD, et al
      . The burden of late effects and related risk factors in adolescent and young adult cancer survivors: a scoping Review. Cancers (Basel) 2021;13:19. doi:10.3390/cancers13194870
      OpenUrl
    29. ↵
      1. Walker AJ,
      2. Lewis FM,
      3. Rosenberg AR
      . Walking on eggshells: parents’ first year after their adolescent completes their cancer treatment [formula: see text]. J Pediatr Oncol Nurs 2020;37:233–43. doi:10.1177/1043454220909788
      OpenUrl
    30. ↵
      1. Roser K,
      2. Baenziger J,
      3. Mader L, et al
      . Attendance to follow-up care in survivors of adolescent and young adult cancer: application of the theory of planned behavior. J Adolesc Young Adult Oncol 2018;7:584–91. doi:10.1089/jayao.2018.0010
      OpenUrl
    31. ↵
      1. Marchak JG,
      2. Christen S,
      3. Mulder RL, et al
      . Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: a report from the International Late effects of childhood cancer guideline harmonization group. Lancet Oncol 2022;23:e184–96. doi:10.1016/S1470-2045(21)00750-6
      OpenUrl
    32. ↵
      1. Gebauer J,
      2. Baust K,
      3. Bardi E, et al
      . Guidelines for long-term follow-up after childhood cancer: practical implications for the daily work. Oncol Res Treat 2020;43:61–9. doi:10.1159/000504200
      OpenUrl
    33. ↵
      1. Gebauer J,
      2. Hilgendorf I,
      3. Koch B, et al
      . Neue Strukturen in der Betreuung und Nachsorge junger Krebspatienten. Oncol Res Treat 2019;42(Suppl. 3):21–6. doi:10.1159/000500818
      OpenUrl
    34. ↵
      1. Potosky AL,
      2. Han PKJ,
      3. Rowland J, et al
      . Differences between primary care physicians’ and oncologists’ knowledge, attitudes and practices regarding the care of cancer survivors[published Online First]. J Gen Intern Med 2011;26:1403–10. doi:10.1007/s11606-011-1808-4
      OpenUrlCrossRefPubMed
    35. ↵
      1. Hendriks MJ,
      2. Harju E,
      3. Michel G
      . The unmet needs of childhood cancer survivors in long-term follow-up care: a qualitative study. Psychooncology 2021;30:485–92. doi:10.1002/pon.5593
      OpenUrl
    36. ↵
      1. Harju E,
      2. Hendriks MJ,
      3. Roser K, et al
      . Healthcare professionals’ opinions on psychological screening in follow-up care for childhood cancer survivors. Swiss Med Wkly 2020;150:Swiss Med Wkly. 2020;150:w20356. doi:10.4414/smw.2020.20356
    37. ↵
      1. Smith TG,
      2. Strollo S,
      3. Hu X, et al
      . Understanding long-term cancer survivors’ preferences for ongoing medical care[published Online First]. J Gen Intern Med 2019;34:2091–7. doi:10.1007/s11606-019-05189-y
      OpenUrl
    38. ↵
      1. Blum RW,
      2. Garell D,
      3. Hodgman CH, et al
      . Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the society for adolescent medicine. J Adolesc Health 1993;14:570–6. doi:10.1016/1054-139x(93)90143-d
      OpenUrlCrossRefPubMedWeb of Science
    39. ↵
      1. Ryan D,
      2. Chafe R,
      3. Moorehead P
      . Transition from pediatric to adult aftercare for survivors of pediatric cancer in newfoundland and Labrador: a qualitative study. Cmajo 2021;9:E309–16. doi:10.9778/cmajo.20200134
      OpenUrlAbstract/FREE Full Text
    40. ↵
      1. Kenney LB,
      2. Melvin P,
      3. Fishman LN, et al
      . Transition and transfer of childhood cancer survivors to adult care: a national survey of pediatric oncologists[published Online First]. Pediatr Blood Cancer 2017;64:346–52. doi:10.1002/pbc.26156
      OpenUrl
    41. ↵
      1. Larsen MH,
      2. Larsen EH,
      3. Ruud E, et al
      . “I have to do things differently now, but I make it work”-young childhood cancer survivors’ experiences of self-management in everyday living. J Cancer Surviv 2022;16:728–40. doi:10.1007/s11764-021-01066-y
      OpenUrl
    42. ↵
      1. Molassiotis A,
      2. Wang M
      . Understanding and supporting informal cancer caregivers. Curr Treat Options in Oncol 2022;23:494–513. doi:10.1007/s11864-022-00955-3
      OpenUrl
    43. ↵
      1. Vetsch J,
      2. Rueegg CS,
      3. Mader L, et al
      . Parents’ preferences for the organisation of long-term follow-up of childhood cancer survivors. Eur J Cancer Care 2018;27:e12649. doi:10.1111/ecc.12649 Available: http://doi.wiley.com/10.1111/ecc.2018.27.issue-2
    44. ↵
      1. Frederick NN,
      2. Bober SL,
      3. Berwick L, et al
      . Preparing childhood cancer survivors for transition to adult care: the young adult perspective. Pediatr Blood Cancer 2017;64:10. doi:10.1002/pbc.26544
      OpenUrlCrossRef
    45. ↵
      1. Kershaw T,
      2. Ellis KR,
      3. Yoon H, et al
      . The interdependence of advanced cancer patients’ and their family caregivers’ mental health, physical health, and self-efficacy over time. Ann Behav Med 2015;49:901–11. doi:10.1007/s12160-015-9743-y
      OpenUrl
    46. ↵
      1. Litzelman K,
      2. Kent EE,
      3. Rowland JH
      . Interrelationships between health behaviors and coping strategies among informal caregivers of cancer survivors. Health Educ Behav 2018;45:90–100. doi:10.1177/1090198117705164
      OpenUrl
    47. ↵
      1. Aleshchenko E,
      2. Swart E,
      3. Spix C, et al
      . Long-term care, care needs and wellbeing of individuals after cancer in childhood or adolescence (VersKiK): study protocol of a large scale multi-methods non-interventional study. BMC Health Serv Res 2022;22:1176. doi:10.1186/s12913-022-08549-3
    48. ↵
      1. Tong A,
      2. Sainsbury P,
      3. Craig J
      . Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349–57. doi:10.1093/intqhc/mzm042
      OpenUrlCrossRefPubMedWeb of Science
    49. ↵
      1. Vasileiou K,
      2. Barnett J,
      3. Thorpe S, et al
      . Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC Med Res Methodol 2018;18:148. doi:10.1186/s12874-018-0594-7
    50. ↵
      1. Saunders B,
      2. Sim J,
      3. Kingstone T, et al
      . Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 2018;52:1893–907. doi:10.1007/s11135-017-0574-8
      OpenUrlCrossRefPubMed
    51. ↵
      1. Polit DF,
      2. Beck CT
      . i.e. 2016. Resource manual for Nursing research, generating and assessing evidence for nursing practice. 10th edn. Philadelphia, Pa., London: Wolters Kluwer, 2017.
    52. ↵
      1. Guest G,
      2. Bunce A,
      3. Johnson L
      . How many interviews are enough? Field Methods 2006;18:59–82. doi:10.1177/1525822X05279903
      OpenUrlCrossRefWeb of Science
    53. ↵
      1. Mueller RA
      . Episodic narrative interview: capturing stories of experience with a methods fusion. Int J Qualit Methods 2019;18:160940691986604. doi:10.1177/1609406919866044
      OpenUrl
    54. ↵
      1. Turner D
      . Qualitative interview design: a practical guide for novice investigators. TQR 2014. doi:10.46743/2160-3715/2010.1178
    55. ↵
      1. Huber J,
      2. Caine V,
      3. Huber M, et al
      . Narrative inquiry as pedagogy in education. Review of Research in Education 2013;37:212–42. doi:10.3102/0091732X12458885
      OpenUrlCrossRef
    56. ↵
      1. Flick U
      . An Introduction to Qualitative Research: Theory, Method and Applications. Sage, 1998.
    57. ↵
      1. Mead KH,
      2. Wang Y,
      3. Cleary S, et al
      . Defining a patient-centered approach to cancer survivorship care: development of the patient centered survivorship care index (PC-SCI). BMC Health Serv Res 2021;21:1353. doi:10.1186/s12913-021-07356-6
    58. ↵
      1. Smeesters D,
      2. Wheeler SC,
      3. Kay AC
      . Indirect Prime-to-Behavior Effects. Elsevier, 2010: 259–317.
    59. ↵
      1. Menold N,
      2. Bogner K
      . Gestaltung von Ratingskalen in Fragebögen: SDM-survey guidelines (GESIS Leibniz Institute for the social sciences); 2015.
    60. ↵
      1. Savage J
      . Ethnography and health care. BMJ 2000;321:1400–2. doi:10.1136/bmj.321.7273.1400
      OpenUrlFREE Full Text
    61. ↵
      1. Hahlweg P,
      2. Härter M,
      3. Nestoriuc Y, et al
      . How are decisions made in cancer care? A qualitative study using participant observation of current practice. BMJ Open 2017;7:e016360. doi:10.1136/bmjopen-2017-016360
    62. ↵
      1. Fix GM,
      2. Kim B,
      3. Ruben M, et al
      . Direct observation methods: a practical guide for health researchers. PEC Innov 2022;1:100036. doi:10.1016/j.pecinn.2022.100036
    63. ↵
      1. Blanch-Hartigan D,
      2. Ruben MA,
      3. Hall JA, et al
      . Measuring nonverbal behavior in clinical interactions: a pragmatic guide. Patient Educ Couns 2018;101:2209–18. doi:10.1016/j.pec.2018.08.013
      OpenUrl
    64. ↵
      1. Emerson RM,
      2. Fretz RI,
      3. Shaw LL
      . WrIting Ethnographic Fieldnotes. 2nd edn. Chicago: The University of Chicago Press, 2020.
    65. ↵
      1. Dörffel W,
      2. Riepenhausenl M,
      3. Lüders H, et al
      . Secondary malignancies following treatment for hodgkin’s lymphoma in childhood and adolescence. Dtsch Arztebl Int 2015;112:320–7. doi:10.3238/arztebl.2015.0320
      OpenUrl
    66. ↵
      1. Schellong G,
      2. Riepenhausen M,
      3. Ehlert K, et al
      . Breast cancer in young women after treatment for Hodgkin’s disease during childhood or adolescence--an observational study with up to 33-year follow-up. Dtsch Arztebl Int 2014;111:3–9. doi:10.3238/arztebl.2014.0003
      OpenUrlPubMed
    67. ↵
      1. Erdmann F,
      2. Kaatsch P,
      3. Grabow D, et al
      . German childhood cancer Registry - annual report 2019 (1980-2018);
    68. ↵
      1. Gebauer J,
      2. Lehnert H,
      3. Schmid SM, et al
      . Spätfolgen einer Krebsbehandlung im Kindes- und Jugendalter Eine Herausforderung für die Transitionsmedizin. Internist (Berl) 2018;59:1157–62.
      OpenUrl
    69. ↵
      1. Hidalgo Santos AD,
      2. De Mingo Alemany MDC,
      3. Moreno Macián F, et al
      . Efectos endocrinológicos tardíos del tratamiento oncológico en supervivientes de meduloblastoma. Andes Pediatr 2019;90:598. doi:10.32641/andespediatr.v90i6.994
      OpenUrl
    70. ↵
      1. Cimetta E,
      2. Figallo E,
      3. Cannizzaro C, et al
      . Micro-bioreactor arrays for controlling cellular environments: design principles for human embryonic stem cell applications. Methods 2009;47:81–9. doi:10.1016/j.ymeth.2008.10.015
      OpenUrlCrossRefPubMed
    71. ↵
      1. Burnard P
      . A method of analysing interview transcripts in qualitative research. Nurse Educ Today 1991;11:461–6. doi:10.1016/0260-6917(91)90009-y
      OpenUrlCrossRefPubMed
    72. ↵
      1. Gale NK,
      2. Heath G,
      3. Cameron E, et al
      . Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 2013;13:117. doi:10.1186/1471-2288-13-117
    73. ↵
      1. Myers C,
      2. Garcia A,
      3. Beidas R, et al
      . A theory of planned behavior exploration of child welfare caseworker referrals to an evidence-based parenting program. J Soc Serv Res 2020;46:877–89. doi:10.1080/01488376.2019.1705458
      OpenUrl
    74. ↵
      1. Przyborski A,
      2. Wohlrab-Sahr M
      . Qualitative Sozialforschung: Ein Arbeitsbuch. 1st edn. München: Oldenbourg, 2008.
    75. ↵
      1. Rehman R,
      2. Solorzano G,
      3. Heist R, et al
      . Predictors of poor adherence to follow-up care in survivors of childhood cancer. Oncology (Williston Park) 2022;36:350–4.
      OpenUrl
    76. ↵
      1. Kagramanov D,
      2. Sutradhar R,
      3. Lau C, et al
      . Impact of the model of long-term follow-up care on adherence to guideline-recommended surveillance among survivors of adolescent and young adult cancers. Cancer Med 2021;10:5078–87. doi:10.1002/cam4.4058
      OpenUrl
    77. ↵
      1. Tsamadi D,
      2. Falbén JK,
      3. Persson LM, et al
      . Stereotype-based priming without stereotype activation: a tale of two priming tasks. Q J Exp Psychol (Hove) 2020;73:1939–48. doi:10.1177/1747021820925396
      OpenUrl
    78. ↵
      1. Molden DC
      . Understanding priming effects in social psychology: what is “social priming” and how does it occur? Social Cognition 2014;32(Supplement):1–11. doi:10.1521/soco.2014.32.supp.1
      OpenUrl
    79. ↵
      1. Sklenarova H,
      2. Krümpelmann A,
      3. Haun MW, et al
      . When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 2015;121:1513–9. doi:10.1002/cncr.29223
      OpenUrlCrossRefPubMed
    80. ↵
      1. Jain J,
      2. Qorri B,
      3. Szewczuk MR
      . The crucial role of primary care providers in the long-term follow-up of adult survivors of childhood cancer
    81. ↵
      1. Mann K,
      2. Wu YP,
      3. Pannier ST, et al
      . Healthcare provider perspectives on pediatric cancer survivorship care plans: a single institution pilot study. Support Care Cancer 2021;29:697–706. doi:10.1007/s00520-020-05522-w
      OpenUrl
    82. ↵
      1. King-Dowling S,
      2. Psihogios AM,
      3. Hill-Kayser C, et al
      . Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer. Pediatr Blood Cancer 2021;68:e28884. doi:10.1002/pbc.28884
    83. ↵
      1. Signorelli C,
      2. Wakefield CE,
      3. Fardell JE, et al
      . The role of primary care physicians in childhood cancer survivorship care: multiperspective interviews. The Oncol 2019;24:710–9. doi:10.1634/theoncologist.2018-0103
      OpenUrl
    84. ↵
      1. Donohue S,
      2. Haine JE,
      3. Li Z, et al
      . The impact of a primary care education program regarding cancer survivorship care plans: results from an engineering. Primary Care, and Oncology Collaborative for Survivorship Health J Canc Educ 2019;34:154–60. doi:10.1007/s13187-017-1281-9
      OpenUrl
    85. ↵
      1. Otth M,
      2. Denzler S,
      3. Koenig C, et al
      . Transition from pediatric to adult follow-up care in childhood cancer survivors-a systematic review. J Cancer Surviv 2021;15:151–62. doi:10.1007/s11764-020-00920-9
      OpenUrlPubMed
    86. ↵
      1. Fitch M,
      2. Zomer S,
      3. Lockwood G, et al
      . Experiences of adult cancer survivors in transitions. Support Care Cancer 2019;27:2977–86. doi:10.1007/s00520-018-4605-3
      OpenUrlPubMed

    Footnotes

    • Collaborators We thank members of VersKiK-consortium for active participation and support of the study: C Spix, P Trocchi, P Ihle, J Kuepper-Nybelen, C Luepkes, T Kloppe, D Horenkamp-Sonntag, I Meier, U Marschall, P Droege, M Klein, C Apfelbacher.

    • Contributors Conceptualisation: EA, KB, TL, GC and ES. Methodology: EA, KB, MV. Resources: EA, KB, JG, TL and GC. Data curation: EA, KB, JG. Writing original-draft: EA, KB, JG, TL. Writing-review and editing: all authors. Project administration: EA, ES. Funding acquisition: ES, GC, KB, TL. All authors have read and approved the manuscript.

    • Funding This study is funded by the Federal Joint Committee (G-BA) Innovation Fund in Germany (grant reference no. 01VSF19013). The funder has no role in the design of the study and is not involved in its implementation, data analysis, and dissemination of results.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • ↵Transition is ‘a planned and structured process involving medical, psychosocial and educational needs of adolescents moving from child to adult care’.38

    • ↵Test interviews were not transcripted, and will not be used to for further analyses. We conducted 12 test interviews in order to get feedbacks from different groups of survivors/informal caregivers as actual interview sample will be relative heterogeneous.

    • ↵Translated from German.