Abstract
BackgroundThe survival rate for childhood, adolescent, and young adult (CAYA) cancers is now approximately 92% (0-14 years). CAYA cancer survivors are at high risk of life-long, chronic health conditions and side-effects from treatments (late effects). Unmet informational needs about future health risks are linked to high levels of psychological distress in CAYA cancer survivors. Female CAYA cancer survivors in particular, have reported that communication of future fertility and reproductive health risks is inadequate and one of the most significant unmet informational needs.
Methods
Pregnancy Information for Childhood Cancer Survivors Studies (PICCS1 and PICCS2) explored the evidence base for the who, what, when, and in what detail, surrounding the optimal communication of late effects with female CAYA cancer survivors. PICCS1 consisted of three-parts; a systematic review, two online questionnaires, and eight semi-structured telephone interviews. PICCS2 then featured a three-round modified Delphi technique to produce an expert guidance document for Health Care Professionals (HCPs). The document outlined recommendations for the communication of future fertility and reproductive health risks with female CAYA cancer survivors. PICCS2 recruited 19
stakeholders from professional, survivor, and parent backgrounds. An embedded patient and public involvement and engagement strategy was used throughout both studies.
Findings
PICCS1 (systematic review) reported 15 studies revealing the themes ‘Future fertility’, ‘Partnership’, ‘Awareness’ and ‘Timing, format and delivery of late effects information’. Late effects informational need was the most significant unmet need for CAYA cancer survivors, with female CAYA with cancer reporting significant unmet needs for future fertility and reproductive health risk information. PICCS1 (questionnaires) found that although HCPs were confident to discuss future fertility risks, they lacked confidence in discussing future pregnancy risks with female CAYA cancer survivors. HCPs preferred verbal communication of risks, at diagnosis or at the end of active treatment. However, survivors and parents reported that in practice, there was a wide variation in the timing of risk communication. PICCS1 (interviews) explored the themes; ‘Emerging practice’, ‘Who, what, when?’, ‘Which
late effect risks’, ‘Honest and transparent communication’, and ‘Long-term distress’. The findings revealed a strong link between unmet informational late effect needs and psychological distress. PICCS2 subsequently produced expert recommendations for the
optimal communication of risk (specifically future fertility and reproductive health risks) with female CAYA cancer survivors.
Conclusion
Communication of future fertility and reproductive health risks for CAYA with cancer is an important unmet informational need for families. An individualised, age-appropriate communication plan is recommended to avoid psychological distress and risk of
miscommunication. Risk based communication dependant on level and type of treatment received is needed, delivered alongside a flexible, age-appropriate approach. PICCS2
addresses this need and provides HCPs with evidence-based guidance for the communication of future fertility and reproductive health risks with female CAYA cancer survivors. However, the guidance requires broader investigation of applicability and impact before wider clinical adoption. Likewise the impact of COVID-19 upon communication preferences and delivery of CAYA cancer survivorship health services merits further consideration.
| Date of Award | 2022 |
|---|---|
| Original language | English |
| Awarding Institution |
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| Supervisor | Jane Coad (Supervisor), Elizabeth Bailey (Supervisor) & Debra Bick (Supervisor) |