Cancer survivorship registries for the collection of patient-reported outcomes: a systematic narrative review — ASN Events
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Cancer survivorship registries for the collection of patient-reported outcomes: a systematic narrative review (#162)

Nadia Corsini 1 , Jennifer Fish 1 2 , Amber Halliday 3 , Ingrid Flight 4 , Imogen Ramsey 1 , Bonnie Wiggins 1 , Carlene Wilson 1 4 , Marion Eckert 1 , Greg Sharplin 1 , Chris Hygonnet 5
  1. Cancer Council SA, Eastwood, SA, Australia
  2. School of Psychology, Social Work and Social Policy , University of South Australia, Magill, SA, Australia
  3. School of Psychology, The University of Adelaide, Adelaide, SA, Australia
  4. School of Medicine, Flinders University, Flinders Centre for Innovation in Cancer, Bedford Park, SA, Australia
  5. Cancer Council South Australia, Eastwood, SA, Australia

Aims: To undertake a systematic narrative review of the literature to: 1) identify existing cancer survivorship registries that collect patient-reported outcomes (PRO) from adult cancer survivors; and 2) describe the methods and practices for approach and follow-up of participants and the measures used for data collection.

Methods: Searches were conducted in Medline, PsycINFO, Cochrane Library, CINAHL, JBI, PubMed and Scopus to identify papers that described the development of a registry or feasibility study to inform the development of a registry. Registries were included if they had ongoing recruitment and collected PROMs at more than one time point. Longitudinal cohort studies were excluded. No date limits were set.

Results: The search identified 6954 papers from which 49 papers were examined further and 14 met the inclusion criteria (representing 6 registries). Types of cancers included in the registries were single tumour, selected tumours, and all cancers. A range of recruitment strategies were used, including direct approach by clinical or research staff, or external approach via letter of invitation. Patients were approached within 6 months or 12 months of diagnosis. Two registries had ongoing periodic data collection (every 6 months or 1-4 times per year). All other registries collected data at baseline and two follow-up points (within 12 to 24 months of baseline assessment). The PRO domains assessed by the registries included quality of life (general, health-related and disease specific), physical and mental health, co-morbidity, psychological and social functioning, treatment and care satisfaction, spiritual wellbeing, optimistic personality type and social support. There was little consistency in the types of instruments used to assess these domains. The presentation will also describe the use made of data linkage, governance structure and infrastructure arrangements.

Conclusions: The findings of the review can inform the development of survivorship registries in other environments, such as the Australian context.

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